swilkinson

Staff - Stroke Support
 View Profile  See their activity

  • Posts

    5,426

  • Joined

  • Last visited

 Content Type 

Blog Entries posted by swilkinson

  1. swilkinson
    I just heard some sad news. One of the couples I got quite fond of during the last three years that Ray and I went to Camp Breakaway were an ex-headmaster of a private school and his wife. She was/is the dementia sufferer, he the caregiver. I heard from a mutual friend that she went to his funeral on Thursday. The sad thing is that he is the second caregiver of my acquaintance this week who has pre-deceased the one they were caring for. Another timely warning that we need to take care of ourselves.
     
    One of my friends asked me what I was doing to change my life now I have " a lot of free time". Well I dispute the fact that I have a lot of free time but I agree I do have the opportunity to make some choices now. She asked me if I had taken up any new hobbies or gone back to any old ones? I told her there are a lot of events I would like to go to, I would like to do tai chi, swim in the heated pool, go to yoga, go to an occasional movie, meet up with girlfriends and maybe have time to have lunch out ,maybe even go to a live show occasionally. That is what I would have done if this caregiver's life was not all I had for the past twelve plus years.
     
    As I pull farther away from the full-time, hands-on, caregiver role I can see it in a new light. I can see the whole twelve years instead of the day-to-day workload. For a long time I was so busy keeping up with all that had to be done that tomorrow seemed a month away and back beyond yesterday was ancient history. I think that is the way it is for all caregivers. We get so immersed in the day-to-day routines and those things that have to be done that the big picture is out of sight and we just see the way life is today. I am not saying that is a bad thing but that it is the way we survive.
     
    I am wondering how apparent that is to the people I post replies to on the board. I start a reply and think: "She doen't really need to know that" or "Is this how I felt when I was in her place?" I am starting to lose that hard edged feeling, the soldier on the battle field has become the clerk back in the barracks recording the results of the battle rather than being right in the thick of it. So is my opinion really relevant now? I hope so, I want to keep on being a help and support but don't know if I can be.
     
    My role now is more in supporting those I encounter at the Nursing Home and those who are still engaged in fighting against the ravages of stroke or dementia are not really the central group for me now. Over the years I have heard a lot of advice from widows who have nursed a sick husband or old parents and appreciated the time they have taken to give me encouragement and advice but wondered if they knew exactly what I was going through. The answer is: of course not. No-one can know exactly how we feel, all they can do is remind us that many folk have been in that same position and somehow come through the traumas and the dramas and here they are today, survivors or that battle.
     
    I have just got back from seeing Ray. He was sleepy today and very slowed down. It took him about twenty minutes to eat a plate of pureed food as he scraped up a spoonful, looked at it for a while and then put it into his mouth. When he got his head down almost level with his plate I took over. After lunch I took him outside for a while for a breath of fresh air but there was cloud building up and the temperature dropped. Again in the loungeroom he sat with his head down, sleeping on and off. I asked on of the aides about it and she said a lot of them seemed sleepy today, maybe because they had made the air conditioning a notch warmer. It could be just that but maybe another seizure or something approaching. I wish there was a way of predicting that.
     
    Last Sunday I was the preacher at the services today at my own service I was the child minder. I can always tell when Adele greets me: "Hello dear lovely Sue" that she has me marked down to take her place. As the Mum of two little ones she is subject to disappear back to the house when they have colds etc. and today was one such day. I don't mind. I made love hearts which we tied on a string, reminding us that God loves us. The little ones just need some colouring in and some craft to keep them happy. That allows their parents to sit at leisure and take in the service, to hear the sermon without little ones interrupting their train of thought. It is a good break for them.
     
    Another very elderly congregation member, one of those I take home communion to had died overnight so I have another funeral to go to later in the week. It is that time of the year for us, deaths among the elderly, another adjustment to make in who we go out to. I'm glad she was enabled to participate in church life through our outreach programs.
     
    And so I plod on, one day at a time, one foot in front of the other, deeper into winter.
  2. swilkinson
    Well Mothers Day is over for another year. I was fully booked doing the three church services plus Messy Church so I knew I would not want to do the traditional " it's Mothers Day so we will have a BBQ" day.I was busy all day from 8am with church events except for over the lunchtime period which I spent with Ray. I had hope for my grandson Lucas to come to Messy Church as he loves it but apparently he was out-of-sorts after a busy Saturday plus breakfast and lunch with his Nanny so got to spend a lot of time in his room calming down. I surely remember those days from raising our two sons.
     
    The services all went well. The three congregations were much downsized because of Mother Day but those who were there seemed happy with what I had to say and a lot came over and shook my hand and gave me compliments. I hadn't done a sermon since 2007 so was really nervous and very glad when it was all over. Until three months time when I will do it all again...lol.
     
    Our daughter, son-in-law and two children arrived here late yesterday evening. They had hoped to get here early enough to take me out to dinner but got stuck in traffic behind a road-blocking accident so arrived 2 hours late. It was too late to go out to dinner by then so we had an improvised meal and they all went to bed, tired out by their big day. It was lovely to have them under the same roof with me.
     
    Today I cooked them a BIG breakfast and then Shirley and I went to see my Mum while the kids stayed home with their Dad and played Wii games, I have a few they don't so they love to raise their scores on them.Craig was tired from taking his own service at the Salvation Army, then driving two hours to where his brother lives in Sydney, having a late family lunch with his mother and brother and then continuing on up here. I guess Craig needed that rest.
     
    Mum was a lot more alert than usual today so she responded to Shirley by looking at her and murmuring so giving the impression she was talking to her. She also smiled a couple of times so Shirley was pleased. She had been here three weeks ago but was unable to see Mum because of the facility being locked down which had so disappointed her.
     
    We returned home and picked up the family and went out to Ray's Nursing Home. It was close to lunchtime so I asked for tray service for him and we took it all down to the park behind the facility. The children went over to the Pharmacy for ice creams and brought one of the usual ones in a tub back for Ray so he had main course, dessert and the ice cream. I think that was a pretty good effort. The kids had a play on the climbing equipment in the park and we spent about an hour talking to Ray. Shirley loves her Dad so was very happy to be able to spend some time with him. It is hard for family members who live some distance away I know.
     
    After we left Ray they took me to a nice restaurant overlooking the water in one of my favourite spots for lunch. I know it was a day late as it is the day after Mothers Day but I reckon we all did very well, the food was good, the company was great. We were able to enjoy a nice lunch without the crowds who would have been there yesterday. The children of course were just happy to have had an extra day off school making it seem like a long weekend.
     
    It was a slow Mothers Day for me yesterday family wise but with all the other things I had to do better to celebrate it on Monday rather than Sunday. And at least our daughter got to see her Grandmother and her Dad at last. And I will see both the boys next weekend. We might get that BBQ yet.
  3. swilkinson
    When I got to the nursing home today the assistant to the physiotherapist came to see me and said she was concerned about Ray's right shoulder as he is again complaining of pain there. I told her about the episode ten days ago when I found him leaning over with his right arm draped downwards and his hand reaching the floor. She said she knew nothing about it so it either wasn't documented or not brought to her attention. She said she would look into it. She came back later and asked to borrow him for five minutes to go through a range of motion exercise with him.
     
    When they came back she said there were definite changes in his abilities and what would I like to do about it? I suggested that she just keep up the exercises and wait and see. I think it is too late to do a lot of things for Ray now, if there has been a new problem with his shoulder an operation would not be the answer anyway. It seems as if I just get complacent about his condition and something happens to wipe the smile off my face. They use a protective sling on his stroke affected left arm as without it that arm just dangles down now but his right arm needs to be kept strong, that will not happen if he has some problem with his shoulder. I am wondering if there has been another fall I have not been told about, it seems not everything is documented as it should be.
     
    It was this time last year when the problems that led to his hospitalization and consequent nursing home placement started. I know his conditions are all sequential and ongoing but it is so easy to imagine on his good days that there is nothing much wrong with him and it is all a lot of fuss about nothing. And then along comes another problem to reaffirm that he is a sick man, it is progressive and here comes another bump in the road.
     
    The visit to Mum was good today, I managed to give her her morning tea drink. She was a little difficult to wake up but I managed to do it. I left her in the big hall with the "church service" just starting. The organist started to play and her left foot started to tap in mid-air, she can still hear that music. I encountered a former nurse from the Dementia Lodge who remembered me and said she is now working one day a week as a pastoral care worker in the Nursing Home and has visited Mum who she is quite fond of. Good to know that old staff members still think of Mum and remember her as she was in times past.
     
    I went to a funeral this afternoon, the lady who did Sunday school before I started a couple of years ago died last week. Her death was the result of breast cancer, she was only 69, the same age as Ray. With her daughter married to a new Zealander the singing was good, the Maori people like the Pacific Islanders can really sing. Her grandson who used to come to Sunday School when he did a sleepover at his grandparents place did a part of the Eulogy, and did it very well. It was a sad day but they made it a celebration of her life. Our church ladies provides a light meal after the funeral and that was much appreciated.
     
    We are constantly reminded that "in the midst of life we are in death". In both nursing homes I see new people and know that someone else has passed away to make their place available. Autumn reminds us of death as Spring reminds us of new life. But in another three weeks, after the official start of winter, I will have a new grand baby. Edie is keeping well, I spoke to her on the phone tonight and she said they are almost ready to receive the new little one into their home. She is tired and Trev is working a few extra hours every week now he is settled into his new job and is on the machines again so he is tired too.
     
    I try to maintain hope, sometimes it is hard as I see the deterioration in Ray and Mum slowly slipping away but I think of the new life to come, the little ones I already have and pray there is still a lot of time ahead for me when I will be here to see them grow. It is the constant hope I have, my wish for the future. I also have to remember that we as a family are loved by a lot of people. I am so appreciative of those who pray for us, here in our real life and there on Strokenet too as so many pass on their loving thoughts to us. It is a great encouragement to me when so many others have problems of their own and still remember us in their prayers.
     
    Today we had the fifth hottest day of this year! And it is almost winter! Such topsy turvy weather! I managed to get Ray's right ear sunburned as he was sitting as I thought under the shade with a peaked hat on but of course his ears were exposed to the hot sun shining through the shadecloth "sails". Silly me, I should have taken in one of his Akubras. I would do only the chances of it going missing is too high. I doubt we will have many more of theses warm days but today was a beautiful day.
  4. swilkinson
    Behind a lot of our old fashioned Pubs was a beer garden. Sometimes this was just a few chairs and tables and colourful umbrellas to shed a bit of shade, sometimes a covered area that might include a BBQ , sometimes a well-planned, shaded area with swings for children as well as chairs and tables, a garden and some ornamentation. Sadly all of this has often been allowed to fall into disrepair with overgrown gardens and rusty broken furniture.
     
    As non-drinkers Ray and I would still in our youth join friends in a beer garden for a hasty, tasty lunch or a few beverages on a hot day. Often at the end of a shopping trip on a Saturday morning that was where we would meet together with other friends we had bumped into while shopping as they had a beer or two and we had a fruit juice or lemonade.That ended when our group of friends married and had children and those afternoons were replaced with an afternoon at the beach or a picnic in the park.
     
    I had almost forgotten that part of our lives when I overheard two of the nurses discussing the "ones who go to the beer garden".It seems that is what they call the group Ray and I often join under the awning at the end of the courtyard that Ray can access from his room. There are mostly five couples who are there regularly but others join us sometimes and there are others who come there when they have a daughter or son who smokes and needs to be outside to do so. It has become a support group in a way as we mostly women caregivers learn a greater patience and acceptance together.
     
    I know none of this is permanent as of course those we care for could deteriorate rapidly or die and we will not continue to see each other but for now it is a good thing for us to be able to draw some strength and comfort from each other and find that good things can come out of bad. I understand the staff naming it the "beer garden" as some of the residents and carers do smoke and yes, in summer a few alcoholic beverages were partaken of by those who found it beneficial. That in itself allowed them to live a small part of what for them would have been their "normal summer".
     
    I have become quite attached to some of the residents and staff members. Of course those in Ray's room I know the best. Some of the residents I got to know when Ray first entered the facility in September have already deteriorated a great deal and owing to age and infirmity no longer leave their rooms, others seem to have stabilised and do come to the dining room for lunch every day so I see them and talk to them on a regular basis. Some of them, with physical rather than mental incapacity can still hold a conversation, share a story or a joke so it can be quite a lively encounter. I have staff members now who automatically bring me a black coffee as soon as Ray and I get settled at the table so I sip that as I asssist Ray to enjoy his lunch.
     
    I suppose you could say I have accepted the placement now but life is never that simple is it? I still have sudden crying episodes, times when a song, a fragment of conversation, a resurfacing memory will just see me overcome with emotion and I will have to find a quiet corner to blow my nose or go off to the Visitor's bathroom to wash my face and give myself a few deep breaths. The road to acceptance is always like this, a day of smiles, a day of tears.
     
    Ray's health continues to be up and down days. Sometimes I cope better with the rollercoaster than other days. Some days I want to know that everything is Ok before I go into the facility so it takes me a lot of self-talk and a few extra minutes to get out of the car and go in. Other times I am sure everything is okay and really it is not so and Ray is shaky, or having coughing fits through lunch or dirty and smelly and it is a very unpleasant place to be. But on the whole we are both coping better now.
     
    Mum is mostly okay and the time I spend with her is routine, either she is awake or asleep, whichever is her state when I visit I stay for as long as it seems feasible before I drive on to visit with Ray. I don't have any worries about how long I stay or how short the visit is, it is what it is. I love it when she is alert and i might get a smile but she is far advanced in her Alzheimers and I accept that those times will be rare. I go to see her, to check on how she is, to liaise with staff, to check on her clothes and her other needs. Her journey with Alzheimers has been a long one and is not yet over so I have to do those last things for her sake. She is my precious Mum and it is right that as her older daughter and main supporter that I do so.
     
    Sometimes it would be lovely to revisit one of those old fashioned Beer Gardens of my youth, to eat drink and be merry and join in the laughter and happiness of being newly in love and optimistic as only the young and carefree can be. Maybe in heaven there is a corner that is like that, where old friends meet once more in carefree good spirits...I hope so anyway.
  5. swilkinson
    I've just read some blogs from April 2006, six years ago, I have been blogging since August 2005 here so if you want to read back it will take you a while. Six years ago Ray had slight signs of dementia, was finally doing his leg exercises and we were doing quite well. We were looking forward to a new grandchild (Alex born in June 2006) and Ray was off to Camp Breakaway for three days to give me a break and the opportunity to have some "Sue time".
     
    As usual at the end of the blogs were the kind and thoughtful comments. That has always been the big bonus of blogging on here, the thoughtful way in which people read and reflect on what is written, it is better than therapy. Thank you all so much to everyone who has supported me in this way over the years.
     
    Today when I found Ray at the Nursing Home he was sitting in the loungeroom in his wheelchair almost toppling over with his head lolled outwards on the right side and his right hand touching the floor. When I moved his arm he yelped with pain. Not good. I finally got him fully awake and upright but it was time for lunch by then so I didn't go to see a staff member to see if anything had happened, like a TIA. he certainly seemed vague and spaced out.
     
    He seemed almost unable to raise the spoon to his mouth today so I borrowed a second spoon and helped him scoop up food and negotiate it to his mouth. In the end I leaned against him to keep him upright which allowed him to move his right hand and shoulder more freely. I did go and see one of the staff after lunch but unfortunatley the only nurse on was attending another resident who had had a fall so I didn't get to speak to her myself.
     
    In the end I decided that Ray would be better off in bed and I asked one of the aides to put him in bed for me. I think maybe life now he is out of quarantine ( the NH opened on Friday) is probably busier than the preceeding two weeks and maybe he is more tired and making an adjustment to that. Or maybe he has had another TIA. Either way bed rest will do him no harm and may improve the situation. And although the day started out with watery sunshine the wind came up, heavier rain fell and honestly a day in bed may be a good use of time. I'm tempted to take it up myself.
     
    My son Trevor was out of work for a week. His job that was supposed to last three months had lasted for eight but it was still a blow when the boss said he was putting him off due to lack of contracts. He didn't have a week's holiday but he started to look for work and on Friday had a second interview for a job which he will start on Monday. With the expected birth of his baby due the first week in June he needs good steady employment so I hope this job will provide just that. Edie is off work awaiting the birth so she is only on basic pay as part of her maternity leave so they will really depend on Trev's wages.
     
    Mum is well, I saw her several times last week and she did have some periods of being awake and alert which was good. I have filled in some of the paperwork needed to go into her Nursing home with Home Communions and should be able to set up appointemnts next week. The NH has to have a clearance from the Federal Police so they know I am not an axe murderer or a threat to their seniors... another instance where too much paperwork discourages people with the time to do so from being volunteers. I also got paperwork from Ray's Nursing Home and theirs is a large multiple page booklet much like an employment form so I will take a while to fill that in.
     
    I was a server at church this morning. I got a good report from my observer other than for being in the wrong place. We had two clergy this morning instead of one so I was trying to keep out of everyone's way. She said I did well apart from that so will soon get rid of my "Learner's" tag...lol. It is good sometimes to take on something that stretches my mind a bit as I need to get back to something like my life used to be. I might even go back to study if I can work out how that will work in with my present responsibilities. I don't want to do anything that will mean giving less time and attention to Ray.
     
    I went out with the WAGS (stroke support) group yesterday and was conscious of being on my own as the other caregivers fussed over their survivor. The others were happy to see me and asked after Ray but I felt strange being there without him. It is all a learning curve and as usual I will battle my way to acceptance as I have done so many times before.
  6. swilkinson
    With Ray in full-time care now I face a lot of events that are beyond my control owing to policies of the facility in which he lives. For me as a former full-time caregiver and now a supervisor of his in-residence care I am having to learn a whole lot of new diplomatic skills to deal with new situations.
     
    I have laid down a policy for them to follow on all sorts of circumstances, what to do if he has a bad virus, what to do if he stops breathing (yes, do send him to hospital) what to do to bring him out of seizures, when to notify me, when to use the head nurse's discretion etc. There doesn't seem to be a support group for people in my situation so I still rely on this site and a couple of others dealing with dementia where some people have put their loved ones into full-time care.
     
    I have had to learn not to feel out of control when Ray gets sick or something goes wrong in his life. It is very hard to do sometimes. At present the NH is "closed" due to an epidemic of gastric virus and I haven't seen him for a week so I have to rely on phone calls to staff. It is very frustrating. The staff of course are focused on preventing the disease from spreading so visitors are locked out until the epidemic is conquered in this facility. I understand that but desperately want to see Ray, I miss him so. Gastric viruses have hit most local nursing homes. Ray's has been in lock down since last Monday, Mum's since last Wednesday. I haven't been to see either of them as I don't want to spread it unnecessarily...sigh.
     
    My daughter Shirley came up on Tuesday with her two children and I was so happy to have them with me. Because of the rain we had to spend a lot of time inside and I was glad she was able to take her coffee out on the verandah with a book and have some quiet time while the grandchildren and I danced and played noisy games on the Wii. As a Salvation Army officer her life is a busy one and I do want her to have some down time. Those who do not take care of their own needs cannot take care of the needs of others.
     
    They stayed for three nights but she had to go home without seeing Ray or her Grandmother. It was very frustrating for her. I enjoyed her and the two grandchildren being here and we made the most of our time together,including a fifteen minute visit to the beach between showers. She was able to visit with both her brothers so the little cousins caught up with each other too.
     
    During that time I was unable to use the internet at all as we had three days of heavy rain so my internet link has been down again, back up again now thank goodness. Oh the joys of modern technology! That meant she had only Saturday to prepare for her church meeting today and tonight so she forfeited her usual Saturday off. I know it is a sacrifice she makes to come here and I do appreciate that.
     
    I've just replied to a message that included the fact that adult children in a family do not step up to the plate when we need them. I have written on this subject a lot during my blog writing here and I don't have the answer, just that wistful question - why? In my times when I needed my children to visit I have screamed and yelled, cajoled and threatened, begged and cried and sometimes it has worked out and my children have visited and most of the time it hasn't.
     
    I know with my sister not seeing Mum that it is a sad, sad thing but it is part of human nature that we feel we have the right to make our own decisions, mine is to visit Mum, hers is not to. I still see my sister, I don't make two wrongs into a right as my Dad used to say. It is another case of being diplomatic. I leave her to her own conscience. I just wish she had visited Mum in the facility the 10 years and more that Mum has been there. Just as I now wish my own children would see their Dad more often. As the saying goes "wishing won't make it so".
     
    Asha, I am trying once more to "go with the flow" I hope one day it seems the right thing to do.
  7. swilkinson

    R2

    By swilkinson,

    When I went into the Nursing Home today I heard a voice say: "Hello Susie Q" and I took no notice. then an arm came around my shoulders and I turned around to see an old friend of Ray's from his early days in Lions. It was good to get a hug from an old friend.
     
    When Ray joined our Lions Club he was the second Ray so the two Rays were known as Ray W and Ray T. Then a third Ray joined and he was also Ray T, so they called him R T2. The three of them then got known as R1, R2, and Ray became R3. Often the three Rays would work on the same projects so they all became good friends. R1 got kidney failure and moved closer to his children in Sydney as he needed dialysis, R2 went into another worthy club and dropped out of Lions and the history of R3 you know.
     
    R2 was visiting a veteran as he is the welfare officer of the local Returned Soldiers league branch. He was in Vietnam himself in the late '60s and acts now as hospital visitor, welfare officer and liaison officer between older veterans and government departments who may be confusing them. Although it is a voluntary job it is almost full-time for him now which is why he dropped out of Lions. He said he thought he had seen my Ray on a previous visit but he had disappeared before he could verify that it really was him. Together we went to the dining room so he could have a short visit.
     
    I am not sure my Ray knew who R2 was, he had the usual watchful look on his face and watched each of us as we talked of old times. R2 said he will come and visit again when he has more time. I escorted him back to the front door and he talked about our older son who rarely visits his Dad, he often sees Steve at funerals. R2 said maybe he doesn't have a lot of time (true) or maybe it could be because he doesn't want to get to know people he may one day have to carry out in a body bag. That could be one explanation I suppose - a kind of squeamishness. At least he has a good opinion of our son - he sees him as a "good bloke, doing a hard job".
     
    My visit to Ray wasn't really a success today, maybe because of the visit from R2 who he didn't recognise, who seemed a bit familiar with his wife (he gave me a hug and kiss at the door), he wasn't really talking to me. It will be better tomorrow. I have gone past the stage of analyzing each visit, some are good, some are bad, some have no real impact on either of us, they are just a few hours spent together. In a lifetime it doesn't make a lot of difference.
     
    Ray is changing slowly. I asked one of the nurses about the shaky way Ray is now at his evening meal. The first time I saw him shakily trying to get his spoon full of food to his mouth I had to walk outside to stop myself from crying. The shakiness is the side effect of the drug used to stop the seizures. There can be no change in the medication nor in its dosage if ray is to not have seizures. So it is a Catch 22, damned if you take it, damned if you don't.
     
    When I asked the head nurse about Ray's condition she slowly lowered her hand level by level and said: "we can't stop the downward progress now." I understand that. I want to ask for a timeline but the answer is always the same: "How long is a piece of string?". I get the same sort of answer when I ask about Mum: "Who knows? Every case of Alzheimer's is different, there are so many different factors to take into account". Of course, i understand both answers, there is no telling when any of us will die. I just want to be there for them both for as long as I can.
     
    I am trying to contact some of my friends from the past and catch up a bit. Of course many of my 1999 friends have moved on, changed jobs, changed phone numbers, in the case of older ones gone into care or died but I am having some success. If I keep the story of Ray's decline simple I don't get stunned silence and can ask: "And what has been happening to you?" and they are still there. It doesn't do to strongly state how hard it has been, just that it has been a while now.
     
    All this is to make sure I don't neglect myself to the stage of collapsing when Ray or Mum goes. I need to have some things I can move forward into rather than go into a decline and remain attached to the past. I know there is no real way of lessening the impact but I want to know that there are people from my old life I can contact later if i want to, old friendships stiil there to renew. We all need to plan ahead if it is possible.
     
    For now as always life is a holding pattern. I get up, have breakfast, go to see Mum, go to see Ray, come home, do housework etc. Some days I shop or visit a friend or go for a drive and sit and stare at the ocean for a while. Sometimes,like last Friday night I have to go back to the Nursing Home again because Ray has had another bad seizure, fortunately not that often. I know if I am needed they will call me as I've said "call me anytime".
     
    It is not the ideal life, it is just life as I lived it today.
  8. swilkinson
    My computer closes down every twenty minutes, everyone says it is a virus but that doesn't help. I switched it off for a couple of days, I simply couldn't deal with it. I need it as a lifeline to the outside world, to my friends here, to my email pals, just to stay sane!. I am frustrated when it does not work.
     
    After three weeks without a seizure Ray has had two seizure days in a row. Last night the aides dealt with it, the night before they called me in and I was there for two hours working on him, talking to him, crying over him before he roused. It is breaking my heart.
     
    In a way it is like Ray is dying inch by inch. Ray goes into the semi coma state, then comes back out again hours later, quieter, more locked in, then gradually he comes good again and I can deceive myself by denying that it ever happened. I want life to be normal so I pretend it is. I will go in and we will spend time in the courtyard and maybe he will talk to me and we will have some laughs and.... I know, it is just a dream.
     
    I tiptoed into the facility today hoping that Ray will be in the lounge room or the courtyard only to find him in bed - "resting" the nurses say. I can see it from their point of view. Ray has a seizure, he is finally out of it, he is tired but does not have a good night's sleep, therefore he needs bedrest. But bedrest means no time in the sun, no meal in the dining room where there is company and some socialising takes place. Bedrest is isolating, for him and for me.
     
    Today I stayed two hours, on Friday I stayed two hours in the noontime and another two hours at night trying to get him out of the semi consciousness after the seizure. I massaged his feet, that seems to stimulate something in him and he rises to consciousness, then i sit him up in the bed and if there is food or drink close by I give him slow mouthfuls until he is fully conscious and capable of interacting again. So then the nurses can give him his medication. I asked if the nurses could massage his feet but apparently they cannot, only physiotherapists can use massage!
     
    In between worrying about Ray I do live a life of sorts. Last night I went to a lovely house a bit further up the coast and joined our Apex40 club for a seafood night. I just adore prawns and oysters and don't mind smoked salmon so i was in semi Paradise. It was the first night of its kind I had attended since 2006, the year when Ray could no longer climb stairs. I thought how much he used to enjoy "Seafood Night" and felt sad that he was not there with me.
     
    I had a really good visit with Ray on Saturday, as I called to see how he was earlier in the morning he was out in his chair waiting for me, I went with him to the dining room, he had lunch and then we went out into the grounds. I was feeling energetic so took him for a long walk down to the lake. Probably a bit ambitious as I then pushed him along to the next street and had to push him up a long hill to get back to the nursing home grounds. Still it was a good feeling, to be doing something normal, enjoying the sun for a change.
     
    When we finally got back, about half an hour or so later Trev had been looking for us everywhere as he had come to visit his Dad. He said next time he will drive around the neighbourhood looking for us! What a problem wandering parents are! He took Ray over to the pharmacy to buy his ice cream cup and we went down under the trees and spent a pleasant half an hour there before Ray decided he had had enough time in the sun and we went back to his room. I am so glad Trevor came, it makes such a difference to the mood when other visitors come and it is not just me.
     
    I pray fervently that Ray, in his present condition, will be spared a few more days, weeks, months...it is what we all do as caregivers, partners, spouses and children of stroke survivors. We love our special people and want to be close to them, to have a good relationship, to help and support and care for them. It is so frustrating when the time we spend with them is so limited by their condition that it is not possible to sustain that so special relationship we once shared.
  9. swilkinson

    raining again

    By swilkinson,

    Ray has not had a seizure for over three weeks, hopefully because the medication has reached the therapeutic level. He did have two days in bed last week due to a bladder infection. I think that was down to the catheter though as they finished up taking it out. Today when I visited him he had that spaced out look which is more frequently his expression now. I note the changes in him and try to keep optimistic, I know I can still enjoy the day and not think about tomorrow.
     
    The not so good news is that he is back on pureed foods as he has had to have three lots of antibiotics in the past two months and the doctor is trying to prevent further episodes of aspirational pneumonia as none of us want him to build up resistance to the usual medication. I am afraid this will make him lose speech as well. That can happen because chewing is what exercises the jaw and keep the muscles used for speech going. Of course he manages the spoon better now as he has only to scoop up softened food.
     
    I go through days of feeling hopeful that he will plateau and we can go on at the present level for a while. Maybe this is just living in a fool's paradise but as usual I just want him to be healthy and stable. I think that is all that is possible now. He appears to be okay, so why do I feel I am still living on a knife edge and that any moment something bad will happen? Is it the number of years I have been listening, waiting for him to breathe, waiting for him to moan, waiting for him to call for help that makes me still lay awake at night? I wish i could "just get over it" as a good friend sugested.
     
    After a few days of fine warm weather it is raining again, with rain predicted as likely for most days next week. A wet summer is being followed by a wet autumn. I, like so many others, were hopeful of a warm, dry season so we could catch up on the house and yard work before winter sets in. There are still floods north and west of us and tumultuous cyclones perched off the coasts of both the north and north west coasts of Australia so nowhere has perfect weather. I guess I will just have to stop my whining and make the most of the fine days left to us.
     
    I went to a Caregivers lunch today with my women friends from the stroke recovery group I belong to. I am starting to notice that some have moved away from me now we no longer have the 24/7 caregiving in common. Maybe they are afraid that they too will one day have to put their loved one into care as I have done with Ray. I find now that the ones who sit with me are the newbies, people looking for some support and advice and an outlet for venting. Maybe that is a good thing as I no longer have an urgent need to offload my own troubles so I have more time to listen to others.
     
    I did my first home commnuions yesterday. I have been licenced in several parishes in the past to be a Eucharistic minister so it was good to have to opportunity to do that again. I love to think I am taking something people really need, that my presence means that the church still cares for them and about them, that they are still part of the church community. Eventually I will get four people to look after and that will be good, for now I am just following Kathy around as she ministers to them. It is good to be back in harness again.
     
    One of Ray's female cousins died last week. Although we used to see a lot of that family they moved away a few years ago and I never had a new address. I didn't open Wednesday's paper till Thursday and there was the notice, a funeral locally at 10.30am Wednesday. It is such a pity that the busyness of our lives keeps us out of contact with others. Once it was not so as other family members would have passed news along, but now all the first cousins are scattered and isolated and we don't have the family contact we used to before the uncles and aunts died. I did tell Ray but not sure he understood who I was speaking of.
     
    ​Trevor called in this afternoon, he had been up to visit my Dad's grave at the cemetery as it was the 100th anniversary of my Dad's birth today. Truly it was yesterday but his father was an Irishman so of course his son was born on St Patrick's Day! My Dad was 27 before he found out his birthday was really 16th of March and as had been the tradition we continued to give him his party on St Paddy's Day. Trevor is the one in our family who cares the most about family traditions, said he misses Dad and misses celebrating St Patrick's Day with him. I am glad someone in the family will always think about Dad on St Patrick's Day even when I am gone.
     
    Thank you to all the people who continue to read this, who comment and share their own thoughts on what I have written. Which means I am not just typing this onto a computer screen I am communicating with good people who care about us. That means a lot to me.
  10. swilkinson
    It has been ten days without a seizure for Ray but he just had two days in bed because of a bladder infection caused by the catheter. It seems as if he goes from one type of illness to another. I guess his immune system is compromised. Wish there was a simple treatment that would fix all this.
     
    I now spend three hours and sometimes more a week with Mum. Sometimes the visits are short, sometimes longer. I just sit with her, engage her as much as I can. To me she is who she always has been and as I watch the expressions on her face I see her as she was at various stages in her life. I have my memories and cruel as Alzheimer's is they can never be taken away.
     
    She is either in her bed or in her water chair when I get there and either place I can simply be with her. She is beyond responding now but often I catch her looking at me and although she is almost blind I wonder if she can see and hear me.I know if I were in her position I would want to have love expressed and so I often say: "You are beautiful Mum and always will be" and "I love you Mum." It is the very least I can do now.
     
    I feel as if we are getting close to the end for her now so want to spend more time with her. I now go three times a week, every Thursday and Friday mornings and either Monday or Tuesday morning. I try to do this without losing any time with Ray. So far it is working out okay. I guess I have accepted her being in care in a way I am struggling to come to terms with with Ray. Maybe that is because she is so old, 93 is a good age. But also because as she has been in care for so long I have long since lost that feeling of being responsible for her that I still feel with Ray.
     
    A friend from church came to the nursing home this week. She is Ray's pew mate from last year. Sadly she has had a fall and damaged a knee which because of her other illnesses can't be operated on so she has lost her mobility. She formerly lived with her only daughter who finds it all too much now. Thus lovely lady has been close to suicide so I hope she will be accept the decision and not get too depressed. Once she is up and in a wheelchair I can take her wherever Ray and I are so she has company.
     
    I just love the guys Ray shares his room with. They are good to him and to me. The man in the next bed gets a Sydney daily paper and shares that with us. It has given me something to read on the rainy days and days like the last two when Ray has been confined to his bed. They also have a sense of humour so we always seem to end up laughing at something one of them has said. I have found the biography of one of Ray's favourite TV presenters in the library and have started reading that to him, one of the cleaners came in to do his room today and said: "Go on reading, I love to hear you read." I think it is things like that that give me a reason to go on.
     
    I am praying that the weather improves and we have that lovely Indian summer we can sometimes have in late March and April. I want to be able to get outside and do some gardening. I want those walks I promised myself some time ago. I feel as if I have gained weight and lost muscle tone. Too much sitting by Ray's bed does nothing for my energy levels. I really need to go for a walk and come back later to check on him some days. There is some reasonably flat walking from where he is down to the Lake so i should be able to get walks in in cooler, dryer weather. It is motivation I lack.
     
    I have been reading a book about forgiveness and how harboring unforgiveness can raise barriers in your life. I know i carry a lot of resentment about the strokes and what they have done to our lives. I somehow have to overcome that bad attitude and concentrate on our lives as they are and make the most of the time we have. I still love Ray, he is my husband and I want the best for him. If that means making the most of where he is now so be it.
     
    So pray for me and help me keep true to what I am trying to do. I know Asha will do that, she is my example for living in the moment and making life's lemons into lemonade.
  11. swilkinson
    I hope you don't mind if I moan about the weather. It is raining again. It has rained most of the week. Today is Saturday and it is wet and cold and most unsummery. Oh wait, we did have two hot, humid and awful days, with thunderstorms and I complained about that too. Roll on autumn, a season where the nights are cool, the days shorter but pleasant...or is global warming going to interfere with that too?
     
    The last couple of all day seizures have made a difference to Ray's alertness. Since the last one Ray has been much less aware and less able to hold any kind of conversation, sometimes even answering a simple question seems beyond him. I know there is no telling if they are causing more brain damage but certainly his ability to do even simple things has gone down. He is on heavier doses of the seizure medication to try and stop the seizures and often sits now with his head down, drooling, with his mouth open.
     
    Ray also seems not to be able to eat more than half a meal by himself. He will take a few dessertspoonfuls and put his spoon down. Up till now he has been a good eater so this is a worrying development. I wonder if it is the new medication or new damage? It also worries me that I am not there every day at lunchtime to make sure he eats at least one good meal a day. What happens when I am not there? How much does he eat?
     
    I had the three grandchildren from close by today as their Dad was on call as the "pick up person" for the funeral home he works for and their Mum had a full day shift starting at 6am. We had fun. The two little boys are 4 1/2 and 5 1/2 now so able to settle longer to do a puzzle or play a game and are more biddable. Alex, the older of the two boys is in his first year at school Oliver at preschool. Tori is a delight and I would have liked to keep her today but she hadn't brought her bag with her so we put it off to another weekend. Now she is older I can't just wash her clothes overnight like I used to, she wants a different outfit for the next day.
     
    I had to do a family history project for my oldest grandson Christopher, we do these projects in upper primary school now. He had to chose someone from his parents generation, someone from his grandparents or great-grandparents gneration. He chose my Dad so I had a trip down memory lane (and shed a few tears ) as I prepared him a few pages of information. I am sure his other grandmother did too as she prepared information on her father. Both were immigrants, my Dad from England, her Dad from Germany. Both families produced children and grandchildren they could be proud of.
     
    I realised a few days go how obsessed I still am with Ray and his health problems. How often I lay awake at night still thinking: "if we do this he will get better", it is not good, it is as if I am still trying to control what is happening to him and worrying will fix it. Will it? of course not. It is so hard to accept that really nothing we do apart from seeing he has the right food, is kept warm/cool and has enough rest is going to make much difference now. How sad is it that statins, which Ray has been on for over twenty years are now being cited as one of the contributing factors to dementia?
     
    I also realised that in focussing so much on Ray I am also neglecting my children and grandchildren, which is why I said "yes" to having the three little ones today and foregoing my visit to Ray. I need to give them some time, some attention, before they grow older and do not need Granma's attention anymore. I know that will come soon enough. Tori only has one year of primary school to go and High School kids really do not want to be seem with Granmas and Granpas. We are definitely not cool with that generation.
     
    I took them with me to the Church Fair and although the weather was wet and few people there, those who were there were cheerful and happy to see us. Little old ladies remarked on what pretty hair Tori has or how "lively" the boys are. I always buy them a whole heap of interesting stuff, I guess it is appreciated by the kids, not so much by their parents...lol. I can afford to buy trinkets for Tori, second hand trucks and toys for the boys. There were three pot plants that didn't get to go home, neither parent is a gardener so I have to take them and plant them myself on my next visit to them.
     
    I have so appreciated the positive attitude of so many of the church folk as we have gone through the drama which seems to be life for us now. A couple on one of the stalls today I often see as they regularly visit an old neighbour of theirs at the nursing home. They always come looking for Ray and me and say g'day. It is sometimes better sometimes to be happy with these considerate well-wishers than to yearn after the friends who have disappeared from our lives of late.
     
    And so life goes on, visiting Ray, catching up on housework, and I would have done yardwork except for the rain, rain and more rain this week. I want a refund on the summer that never was, I've missed out on the swimming, the walks along the beach, the picnics and BBQs, the many sunny days of enjoying the great outdoors. I know there may be a lovely autumn (fall) ahead so maybe I will be able to spent time in the garden then.
     
    Global warming seems to have become global raining...grrr! So much rain that we have so many areas flooded, 75% of New South Wales is flood affected as of this morning. Luckily we are one of the district to have more moderate falls. Life certainly could be worse.
  12. swilkinson

    an odd kind of week

    By swilkinson,

    This week has been an odd kind of week. I have had a few social activities and that has been good. I went to the Lions dinner and that was a pleasant evening. I am looking to doing a little more volunteering with them as soon as life settles down. I am still a little tentative with what I do there, it is strange being a "single" rather than Ray's caregiver, I guess I will get used to that eventually. I went to the Apex40 dinner on Thursday and that was good too. I feel more at home there as there are several widows coming alone and I know one day I will be one of them too.
     
    Last Monday I had a delightful dinner out with some old friends and went back to their house and we watched a movie "Holy Man" with Eddie Murphy, very funny and something to think about. The craft group was also another outing so not so much time spent alone this week. If I can get a routine going, places to go, things to do I know I will feel happier about the direction my life is taking.
     
    The bedroom change finally took place this weekend. It is odd as the middle room is now set up with the two single beds and I suddenly realised I had set it up just like I did for the boys when they were 12 and 15, sort of sent shivers up my spine when I realised what I had done. I need to think of it as the grandkids bedroom now and maybe change the curtains, put bright pictures on the wall etc. It is still scary to think that sometimes life seems to go backwards instead of forwards though.
     
    I know I need to make some changes in my life but what direction the changes need to be in I do not know. I don't seem to have a lot of ideas about what I want to do,as I have said before going back to where I was before I became a caregiver is not an option. Back then I was doing two jobs and looking after the house and helping out my very aged parents. Now I am living in the house by myself and while Mum is still alive supervising her care as well as spending so much time with Ray. It really doesn't leave much spare time by the time i have done housework etc.
     
    Ray has been in care going on for six months now and my life still consists of me going to see him most days over the lunch hour to make sure he eats. There is not a lot else I can do for him apart from keeping him company for a while . His attention span seems to be shrinking and even the reading does not hold his attention for long. As his cognition fades it is less likely he will respond to what I say, more likely he will spend a lot of the time I am with him being locked away somewhere where I can't seem to reach him. I guess the combination of the seizures and the medication to stop them is making this happen now. It is again like losing him by inches.
     
    After being in a semi conscious state most of last Saturday with another series of seizures Ray spent all day Sunday in bed but was up and in his wheelchair by Monday and it has been a fairly uneventful week healthwise. He hasn't had a lot of bright and alert time and I have had to help him with his midday meal most days, seems he gets half way through and seems to lose the energy to go on putting food in his mouth now. As far as I have been told he has not had any more seizures. It is still very hard when I notice a downturn in his responsiveness.
     
    On Friday we had a rare treat, a visit from the older of his two sisters and his brother-in-law. I do keep them up with the latest news so it didn't come as a shock for them to see him inattentive and drooling. They stayed about an hour and said: "see you soon" when they went but I doubt they will. They live in Queensland and with kids, grandkids and an active retirement have a fairly busy lifestyle. Judy and Val, Ray's two sisters were my bridesmaids but over the years we have not seen a lot of them. They have mostly lived their own lives, each married and raised a family and we've maybe heard from them a couple of times a year. Not a close family really.
     
    Well meaning friends ask what I am doing for myself now. I tell them my week has mostly been spent with Ray and Mum. Some of them don't want to hear that. I don't think they understand it is hard to rebuild your life after twelve years as a caregiver and no, it is not time yet to "move on"..
  13. swilkinson

    making small changes

    By swilkinson,

    Just thinking that a lot of issues I am going through are similar to others who are newly "separated". It is illness that has separated Ray and I in our case but I don't think the reason matters, the resulting loneliness and change of roles is still a factor.
     
    Today I decided to change the bedrooms around. I remember the angst I went through when we got rid of the double bed bought by my MIL when we got married and changed to two single beds pushed together. Now they are going into the middle bedroom to be used by the grandchildren when they stay over and the double bed from the front room is going to be my bed. What affect that will have on my sleeplessness I don't know but I am hoping that if I make some changes in my physical surroundings that will settle the "separation anxiety" I am feeling.
     
    Looking at Ray in the daytime, when we are sitting in one of the lounge rooms or the courtyard I often feel that of course I could take him home. At the nursing home he sits there in his wheelchair, nicely dressed, clean and tidy, slightly smiling, looking around and he looks so normal. Of course I do know all the work that has taken place by several people to achieve that look, getting him out of bed using the Standaide, the showering and the dressing, involving several people are no small task, by myself that alone would take hours.
     
    At night I can imagine him in his armchair sitting next to me so strongly some nights that I turn to make some remark to him and of course he is not there. That is often when I fall apart, the emotion so strong coupled with that belief that my husband of 43 years should of course be sitting there by my side. Except that of course his many disabilities have made that impossible.
     
    I also visited Mum this morning and she was fairly alert for a change. She was still being showered when I arrived so I was asked to wait in a little alcove with some easy chairs and magazines in, much like a small waiting room anywhere. The aides did wheel her out to me when they had finished so we went into one of the big airy rooms and enjoyed watching a relaxation video featuring swans etc on a small lake with a nice music track playing. I found it soothing so I hope Mum did too. In the end she fell asleep and I went on to visit Ray.
     
    I went to the Carer's support group at Mum's NH last Wednesday after I did chat here. The group has changed, a few members dropping out after their loved ones have died and new people appearing to take their place. One dear lady looked on the edge of tears for the whole hour but was unable to articulate any of what she was feeling. I hope she comes back month by month until she trusts us enough to share what she is going through. We all know it really helps to share the problems and the pain and seek out others who really understand what we are going through.
     
    Today I had afternoon tea with an old friend, she has her Dad in care and as his POA etc she is now immersed in all the responsibilities of looking after her father's finances and looking after his day-to-day needs other than what the nursing staff etc does for him. She said even buying his toiletries is an embarrassment for her as he was always until some months ago very independent and a very private person. Now she needs also to buy his underwear, operate his bank account, know the dentist, doctor and specialist appointments etc. She is willing to do it, just never thought she would have to.
     
    Once again I am questioning my friendships as few people have contacted me to ask after Ray, to inquire what I am doing to fill in my time or ring regularly to make pleasant conversation to fill in my time. A few good friends have stayed by me and others have sent me emails and kept in touch that way. It would be easier if I had a few cousins etc to rally around to help me through this but of course apart from my sister who I see every couple of months there is no-one, one of the downsides of being part of an immigrant family. Ray's family rarely contact now.
     
    I am still feeling a little lost without seeing Trevor's family every day. Since he moved close by, two blocks over, to help me with lifting Ray before he went to the hospital and then the nursing home I became used to seeing them all regularly. And then they moved in here for two months of that 18 month period. I had became so used to having their little family close by. Now they seem settled in into another life and I really miss them, even Charlie the cat. I especially miss the company of Edie and Lucas. Edie and I often had a discussion over coffee after Lucas had gone to school. As she worked afternoon shift she had more time in the mornings. And Lucas was a constant source of noise, funny that even things that grate on you can be badly missed once they are at a distance!.
     
    I know it seems as if I am "stuck" at times in some sort of unreal holding pattern. I would have thought it was time I got over the separation and settled down to living a self-directed life. Not self-centered as I still have a lot of things to do for Ray and with Ray, but more self-directed than is presently the case. Maybe that will come in time.
  14. swilkinson
    Ray is back in his nursing home again. He didn't get out of bed today as the head nurse wanted the physio to sign off on his suitability to be back in his wheelchair self-propelling again. As the conclusion at the end of his hospital stay was that he had had a bad seizure, or maybe a series of seizures he should not have to be signed off, after all there shouldn't be any significant changes to his cognition as there would be had he had a stroke - should there?
     
    I found the days long in the hospital as I sat beside his bed for five or six hours each day. I like to be there to act as his interpreter. Ray cannot answer questions easily, it may take him two or three minutes to answer a simple question, if it involves thinking back more than a few hours he is not able to answer it at all. So it is easier if I am there to be his memory aid.
     
    I am glad Ray is back at the nursing home but will be sad if this latest event has taken more away from him. For instance if he is not able to go in the wheelchair, or if he is not considered suitable to eat in the dining room now. It is small things like that that add to his life, being able to be where people are, where the acivities are going on, being able to join in. I put myself in his shoes and that ability to go on with some sort of life is what I would want for me.
     
    A lot of people have asked me if I am getting used to being alone now Ray is in a nursing home. You call that a SNF and it is officially an Aged Care Facility here but you all know what I mean.
     
    The answer is "no" - I am not getting used to being alone. Just as Ray, like everyone who goes into full-time care, wants to "go home", I want and NEED him to be here. However I do know that the Ray I would want home is not the Ray that is in a nursing home needing three people to get him showered and changed but the Ray from some years ago who could walk, converse, laugh at a joke, and generally enjoy life.I put him into the NH because of all the changes and difficulty of one person handling him and that will not change with time.
     
    I know we all to some extent live in denial. I too have thought "this will never happen to us". I am posting this in the hope that some of you will look ahead and see that some day you may be in the same position I am in and in some ways prepare for it and others may see how fortunate they are not to be in the same position as yet and be thankful for the companionship they can still enjoy with their partner/loved one.
     
    I guess as the time stretches out I will get used to the routine of going to the nursing home and back, fitting in life around the visits to Ray. I know that he will eventually settle down and remember little from the many years he lived here with me. I try not to be sad about that.
     
    I know in order to keep friends now I need to alter my lifestyle. For so many years it has been "Ray and his carer/wife Sue". Now it is just Sue here and Ray in a nursing home so I need to learn to relate in a different way. Maybe I need to change my mindset and find some new things to do or return to old hobbies I dropped because I took up Ray's care. It scares me sometimes that this living without my husband of 43 years is the way it is going to be for a long time into the future. I guess it is this sense of "aloneness" that makes it so difficult to accept.
     
    Here on my piece of the lovely Central Cost we have a lot of nursing home complexes, in some cases accompanied by self-care and hostel type residentials. There are a lot of people like me still living in a home once full of family and friends and buzzing with life. I am not unique, just new to being one of this vast number of mostly separated women facing changes in their lives. Does this thought scare me? Not really, just reminds me that life evolves and somehow we all have to live with that.
     
    So Ray is back in the nursing home and the visiting there will hopefully become routine for me. It will be do some chores, visit Ray, come home and have some late lunch, do some chores, dinner and whatever the evening brings. I guess it can be a good life. As long as I can ensure it is not a sad and lonely one I should be okay.
  15. swilkinson
    Must be that time of the year! We had about a week of rain, it flooded my phone junction box and on Thursday night my phone line started a loud buzzing noise and my Internet went down. So no Internet - no phone. On Saturday morning I was sitting in a stroke support meeting when a receptionist approached bearing a phone and it was news from the nursing home - Ray had had another collapse, maybe a stroke and was on his way by ambulance to Wyong Hospital. Wow! was that a blow!
     
    So off I went to join him in the Accident and Emergency. Ray was semi conscious, unresponsive, seemed in a coma of some kind. The staff were hovering but didn't seem to be doing anything.eventually he got accessed and they decided he would stay in a general ward "for a few days" and told me to go home and catch some rest.
     
    Well, Sunday he was similar to what he had been like when I left him on Saturday evening, the staff said he had aroused briefly but his heart rate was erratic, his breathing and blood work indicated an infection so they had started him on an antibiotic. He looked as if his face was swollen and he was having difficulty swallowing so only a drip to rehydrate him, nil by mouth. He seemed oblivious to my presence but did rouse for a couple of minutes and answer "yes" and "no to a couple of questions the nurses asked him.
     
    I honestly thought this was the end. Ray lay mostly with his mouth open with somewhat laboured breathing and his heart monitor went off every few minutes. The staff showed much professionalism but once again we went through the "do not resuscitate" regulations. It seems each incident is treated separately and the protocols have to be restated. I looked at him and wondered if I should change my thoughts on peg feeding etc. On oxygen Ray looks a million dollars but looks can be deceiving. I knew this time he was really sick.
     
    Today (Monday) he was responding, answering questions in some fashion, not really intelligently but trying to come up with some kind of answer. He was throwing his covers off and seemed very restless. I know he just hates to have an oxygen mask on. He said his left leg was "sore" and when I tried to reposition him he seemed not to be able to straighten his left leg. I am wondering if this is a new "deficit" or whether it is just too much effort to straighten it in his present state and that will resolve later.
     
    The staff in the ward he is in are excellent. This time he is in a stroke assessment unit and they are treating him as if he has had an additional stroke. I have once again given them a timeline including all the previous strokes and as much of his medical history as I can remember. This time his doctor is a stroke specialist,who seems to know his stuff but hesitates to say he has had as stroke as it is not showing up on the CT scan. I would say he has had a stroke, all the indicators are there but once again not enough evidence. I asked the specialist what he was calling it and he said: "a lapse into unconsciousness of unknown origin"...I think that is a medical term meaning "I don't know".
     
    So when I came home today my phone was working again and here I am. I have answered some of the messages, mostly from the people who were at the stroke meeting that I ran out of on Saturday morning and tomorrow I will answer the rest. For the next few days I will spend as much time as possible by Ray's side to once again act as his interpreter and answer all the questions he no longer knows the answer to. The nurse who did the mini mental asked him where he was and he answered: "Ourimbah Railways station". I guess the long glassed in corridor he could see out of his window could have looked like a train and may be the machine noises he could hear reminded him of a train...hard to say.
     
    Tomorrow I hope to find him even better, more like the Ray of the last few weeks, maybe even able to sit up and take in some nourishing food. I am an optomist so I want him to go back to being able to propel himself around the nursing home, enjoy the concerts, go out on the bus, do all of the things he was doing last week. But also being a realist I am prepared to wait and see what the future does bring. I am just happy to have him still with me.
  16. swilkinson

    cool summer days

    By swilkinson,

    Did you miss me? I missed you all. Especially those who meet in Tuesday night's Caregiver Chat and all my friends in Blog World. I am just back from my little getaway. For most of it I was a long way from where I thought I would be, on a rural property on the Southern Highlands, not on a busy road running alongside Lake Illawara. It all turned out much different from what I had planned. I thought I was going down to mind the grandchildren for the last week of the school holidays to let their parents get on with their work of community welfare in the Salvation Army. I went down on the train on the 20th and was prepared to settle in. Not so. I was told:"Mummy and Daddy are still on holidays so we are taking you away with us".
     
    So off we went to a small property in the Snowy Mountains in the south of New South Wales, a dot on the map called Dry Plains. It is above 1700 feet above sea level so it is much colder than here, cold for summer, cold at night and at one stage only 11c (18f) degrees and that was the highest it got on that day! Just as well I had taken jeans and my daughter found me an old sweatshirt and I managed to stop shivering. You can guess the swimsuit didn't get wet!
     
    I had a lovely relaxing time and so did my daughter as I made her an honorary member of my January reading club and we spent whatever time we were at leisure reading on her back verandah (yes, she has one too on the back of the little two bedroom cottage). The grandkids (bless them) were co-operative so if Mum and Granma had to have a sit down for a while they also found something quiet to do. We read the Readers Digest condensed books, good , bad and "what is this???" and enjoyed each in it's own way.
     
    Yes, I did worry about Ray, about Mum and about Trevor and Edie and Lucas moving from here to their new rental home two suburbs over but for once I did not let any of that disturb my peace. I have got to have a break sometimes, I have had a hard twelve years and now I need to let go of some of the anxiety and try to rebuild my own confidence in life in order to keep strong for Ray. Ray and Mum both have others to take care of them now and I need to trust that those others will be competent and able to deal with day-today caring for them. And if anything does go wrong they have the boys' phone numbers.
     
    We had a good joke about the weather. Craig has a barometer in the window over the sink so when he was washing up he would call out: "I thought you said it was cold, look it's 21 degrees, 22, 23, 24... look it's 30 (84f)...we ought to go swimming!" Even though we knew it was the steam warming the barometer we still laughed every time he said it.
     
    It was great to be in a place where the night is black as pitch, the only sounds during the day the infrequent vehicles travelling into town on the dirt road, the only night noises being the "baaaa" of faraway sheep and the occasional night bird. The land has a very small house on it so I shared the 2nd bedroom with my grandchildren and okay, Granma snores so they would throw stuffed toys at me to try and make me stop. A lot of giggling each night until "Mum" told us all to "pipe down and go to sleep!"
     
    We had BBQs and day trips out, often stopping for morning tea or lunch somewhere nice. We had walks along Lake Eucumbene and we explored the little villages close by. We had plenty to do and see and of course plenty of good fresh country air so we all slept well at night. We did some walking locally too and I found a nice patch of everlasting daisies that Shirley can dry and put into a vase. We saw kangaroos at dusk and saw plenty of birds and sheep of course as it is high country pastures all around.
     
    I must admit I can feel myself slowing down now and found it hard keeping up with the little ones. Christopher is 12 now and taller than me with a long stride so he takes some keeping up with. Naomi at aged seven is still clingy so loves to walk hand in hand. It was great to be able to spend some time with them.
     
    I have been sad for over a year now and sometimes close to depression so I need to work on that now and make myself mentally stronger. I will always have worry about Mum and Ray I know but I need to handle it better. I love them both but it is counter-productive to make myself sick with the worry. I need to be more logical and less emotional in what I do. I had a lot of thinking to do and the peace and quiet of the country allowed me to do that.
     
    I have really valued the prayers of so many people, including my friends on here. Each time I visit the Salvation Army Corps Shirley and Craig are in charge of, people come up and tell me they are praying for Ray and for me, we are Captain Shirley's parents and important to them. It is that and many other kindnesses that keep me going on.
  17. swilkinson

    a blog for today

    By swilkinson,

    No chat today so this is a blog to add comments to about what you are facing today. Remember it is a public blog so others can see it.
     
    I am sorry that this is happening right now as I know it is frustrating not to be able to meet up with your friends in this way.
     
    My today is a hot one and I have a lot of clothes flapping on the clothesline. Edie has been having a lot of trouble with blood pressure during this pregnancy so she is at Prenatal Clinic today and then goes to work, Trev is at work and Lucas is at Vacation Care.
     
    I guess setting up house again on their own will be a big learning curve as they have had a fair amount of help with cooking, tidying, babysitting etc from me since they have been here. Still they are young and have a lot of energy they need to harness. And I will get the house set up again when I get back from my stay with my daughter and family. (I am an older lady and set in my ways...lol).
     
    At Lions last night I learned that a few people have visited Ray in the nursing home but because he doesn't remember I would never had known if they hadn't told me. It is like he is living his life in secret. I feel shut out but am trying to come to terms with that. The break away may help.
     
    After lunch this afternoon I will tidy things as much as I can. I will visit Mum and Ray tomorrow so I have current news for the family down south. I will miss them all while I am away but I need the break and to see the grandchildren too. I realised that I have been concentrating still on the problems here and do need to step away and look at the bigger picture.
     
    Pray for some fine weather for me and travelling mercies.
     
    Sue.
  18. swilkinson

    contemplating changes

    By swilkinson,

    Tonight was the first Lions dinner of 2012. It is usual to pay your fees at the second dinner in January so members were lining up to pay. Suddenly I realized I have to either pay for another six months for Ray or write a letter of resignation on his behalf. How very sad, another thing that the combination of strokes and dementia has taken away from him. After 28 years of being a member, and a very active one at that prior to the 1999 stroke, there will be little chance of him even getting back for a special dinner.
     
     
    I go away for a week on Friday, down to visit my daughter and her family. Trev, Edie and Lucas will be packing up while I am away to move to a rental house two suburbs away. They wanted to move now so they can set up a room for the baby. My house is a three bedroom but of course I am in one of them. I think I was foolish to believe we could all manage here. Three generations living happily in one house can only be done with a lot of cooperation. While some can do it, we found we could not live comfortably together in such a small space.
     
    Maybe now is the right time for them to make the move while Edie has some energy. She has some health issues which might mean bed rest later in her pregnancy. I feel sorry for Trevor having to repack for another move, they have a lot already packed and stored up the back, in our old cabin, so it won't be as bad as when they moved the last two times. They have been mostly using my stuff while they have been here. They are hoping the next move will be to a house of their own.
     
    Because Ray does not recall having visitors it is easy for me to assume he doesn't have any. I found out tonight two lots of Lions have visited him since Christmas. A member of our WAGS group also visited him last week. So he does have visitors, just no recollection of them. One of the men tonight said they had "quite a yarn" and Ray seemed "quite bright". They must have had better luck than Trevor had when he tried to visit Ray yesterday afternoon and found him asleep and impossible to wake up. Sounded like some of the visits I have to see my Mum.
     
    Ray's personality is slowly changing now, I guess it is partly that he is in care and not moving around in the community as he used to. This means there are not a lot of changes and his life is very much more routine. This also means not as much interchanging of ideas, dealing with people, struggling with problem solving etc. Most of the nursing home staff are kind but busy so conversations are short and not really meaningful.
     
    I read to Ray as I think that will help to stimulate his imagination but I think it is inevitable that at some stage he will stop talking as he doesn't have a lot of conversations now apart from those I initiate.We do join in with a group of people in the courtyard outside his room under the pergola. This is good for me as it is like a mini caregivers' support group but it is not like family contact, Ray needs that too. I need to encourage our children to take the grandchildren to see him as much as they are able to. I fear he will start to forget them now. His short time memory is bad and his medium to long term memory is too. He is forgetting the past and is unable to contemplate the future.
     
    I realise my life is changing more and more and soon it will bear little resemblance to the life I had as a full-time caregiver. I am just realising I will never again have contact with some of the carers who used to come here on a regular basis. In a way it is like losing friends all over again as for a time they were our friends, closer than friends who rarely visited as some of them came twice a week for a while. For the past six months or so I was too busy supervising Ray's care in the nursing home to take time out to look at my life and see what it was evolving into,now I really need to do that.
     
    I will take some time while I am away to think bout how I want to manage the chores I have to do, the visits to Ray and the spare time in between. I do not want to fill my time with joining committees, doing volunteer work or minding grandkids. But although I know what I do not want to do I do not know what I do want to do.
  19. swilkinson
    This has been a mixed week. I think I got a touch of the virus that Trev and Edie had as I had a couple of days of aches and pains and dragging myself around. It has been doing the rounds and I hope it has left for good. I also got a few mosquito bites and I guess they were swampies which I am allergic to so got some large painful areas and that ruined my sleep for a couple of nights.
     
    Edie, Lucas and Trevor are moving out again at the end of this month. They have found a rental house that is on the right bus route for Lucas’s school and decided to take it. I think it is a bit premature as they were going to wait until a month or so before the baby was due but it is their call. They want to set up a nursery and maybe Edie thought she would do it now while she has the energy.
     
    It is a pity as we did all that clearing out so they could move in and now it all has been for nothing. I am be glad for them that they will have a larger space to live in, it was going to be a squeeze here if they had stayed until after the baby had arrived. But on the other hand they will not be saving much money toward their own place so that is a pity.
     
    I took Ray to the kidney specialist today and he said Ray’s kidney function was the best it had been for three years. It is “really good”. I asked how good was “really good” and he said about 25%! I am so glad it is not bad!
     
    I asked the kitchen staff if Ray could have a lunch meal 15 minutes ahead of schedule and they did that for Ray. They also gave me a pack of sandwiches, so he had half his lunch before we kept the appointment and half when he got back. I think the experience did tire him out a lot though he was still smiling when we got back to the nursing home. We went in a wheelchair taxi, just under $100 for the round trip. Without balance I couldn’t have got him in and out of my car so a taxi was the only viable solution. Luckily the taxi driver was talkative so the miles just slipped by.
     
    Ray doesn’t have to see the kidney specialist again as he said there is little more he can do than is being done for Ray, he did suggest a change of one tablet and a variation of dose on another. I have appreciated his expertise at balancing tablets for Ray and it was he who talked me through the change from diabetic tablets to insulin for Ray so he has been well worth the expense as far as I am concerned.
     
    As I said before, Ray had a burst blood vessel in his right eye which the nurse says due to an "episode of high blood pressure". It looked awful, totally red and he rubbed it all the time. After a week it has just faded to a red streak so I hope that is the last of it.
     
    I am a bit worried about Mum. I took her out into the sunlight and noticed her skin is translucent now. In the past few days she seems to have gone a creamy color as if her skin is paling out and the veins in her hands and legs seem quite blue now. I asked one of the aides who frequently looks after the ladies in her room if Mum was well and she said yes, Mum was fine. It seems as if there are no changes and then I notice somehow she is different. I just don't panic as much now; I think this is just a step closer to the end.
     
    The staff and I are getting more used to finding Ray when he goes missing. He self-propels with his good right foot in his wheelchair and often ends up sitting watching television beside someone's bed in the hostel section. The staff like him to get about but I think we're all getting a bit frustrated with the game of hide-and-seek. They have started noting where he is now and I just run from one nurse’s station to another and someone points me in the right direction.
     
    I have met up with some other wives now and we often sit under the cover near the BBQ in the hour before lunch, three of them (two husbands, one wife) are smokers and that is why they like being outside. With eight or ten of us around one long table there is a lot of chatting going on and it is very pleasant. The staff are really pleased as they see this as some kind of support group forming.
     
    I wish I felt good about all of this, I try to but a big part of me still wants Ray back home. That may not change any time soon. We are able to do so little now that we once did. I know the “Ray might come home one day” is a pipedream or another form of denial but I so wish, wish, wish, it could happen. I do not feel complete without him here with me.
     
    I foolishly thought having Trev and Family here would be a distraction but in a way it made it worse. I guess I thought we would be company for each other but with shift work etc that never really happened. I am finding it is hard to get used to the idea of being a woman alone. I will have the week with my duaghter at the end of the month so have that to look forward to.
     
    I have some friends and the people here but there are things that there really is no-one who would understand and I need someone to talk things over with. Maybe I need to find a counselor, I have thought about that but don’t know where to find someone who specializes in separation due to illness and the feelings of bereavement that causes. Maybe find out from my old dementia group if someone has any idea on who I can see.
     
    Now I have to get to the end of the month, take a deep breath and start practicing being “Sue alone” again. That is until the next emergency comes up and someone else comes to live with me or wants me to mind their children.
  20. swilkinson

    more relaxed now

    By swilkinson,

    January for me is “Reading Month”. I adopted this in the ‘90s when I was working full-time and studying part time. No study from early December till early February so in January I caught up on any books I had put aside to read. So if I am sitting down and obviously not doing much and someone asks what I am doing the reply is: “It’s January so I am reading.”
     
    I think it is the little things that keep us going in life. Taking time to do our own thing whether it is gardening, reading or playing games on the computer, if it is OUR pleasure then we use it for leisure. I’m thinking of Debbie and her “lady shower” that she has when someone else is in the house keeping an eye on Bruce or Sarah and her hot stone massage. If you don’t have a hobby or leisure activity maybe you can think of something special you can do that is your way of relaxing and feeling better about life.
     
    Most activities do not start up again in Australia until mid-January. A lot of older Australian assist the younger generation with childcare so it is expected that most of our church congregation will be unreliable attendees during the six weeks summer school break. It is no use setting up annual general meetings until February when we are all back home again. This gives us all a breathing space and I like not having regular commitments for a while after the frantic lead-up to Christmas that leaves us all feeling so tired.
     
    I went over to Ray’s NH today and realised it was BBQ lunch day. This is only really a sausage sizzle but relatives who are visiting get to eat too. Today it was a few French fries, a scoop of coleslaw, a little cut up tomato and a sausage each and a slice of buttered bread. I sat out in the courtyard with Ray and talked to other wives who were also sitting helping their husbands with the meal. It was a good time of fellowship and a less stressful visit for us all.
     
    We need those times to realise there are a lot of us in the same situation, loved ones in care, us rattling around in a half-empty house or sharing with a family member. None of us feeling happy about the arrangement but knowing this is the only way things can be right now. What we need to do is let go of the control and let go of the guilt that comes from putting a loved one “into care. I am still working on that one.
     
    Ray has had a blood vessel break in his right eye; this could be due to an episode of high blood pressure or a prolonged coughing fit. Whichever it is the eye is improving after four days of looking red and angry. Every week there seems to be something new to worry about. He fell asleep before the end of the barbecue today; I woke him up to eat his ice cream. I know he would hate to miss out on that treat.
     
    It took three days for staff to locate Ray’s shoe, in the end one of the cleaners found it so he has two on again. He was also wearing one of the new shirts we bought him as a Christmas present. Since he has been sitting all the time he has put on a lot of weight around the middle so has gone up two sizes. I took home the ones that didn’t fit and substituted the new ones. I like him to be as smart looking as he can be while still feeling comfortable.
     
    The arguing here seems to have stopped for the time being. Edie’s health is a worry at the moment as at 18 weeks pregnant she has high blood pressure and her kidney tests came back to show she is stressed. It is partly the weather, hot and humid and just the busyness of summer and Christmas. She works and has a child and a new husband and a new address, no wonder she is stressed.
     
    Mum was the same this week as last week when I visited her yesterday, sleeping with an occasional time of opening her eyes. I know she could slip away any time now. I am not worried about her as she gets excellent care. I am just concerned to see the staff do all they can for her, that she is clean, comfortable and in no pain. She and two of her room companions are at the same stage so one by one they will slip away.
     
    I am gradually reconnecting with some of my friends and acquaintances I have been too busy to keep up with in the past year. For a while all my energy had to be focussed on Ray, now I am trying to let go of some of the control and letting the staff at the nursing home do what they are paid to do. It is not easy but I am trying. A lot of Ray's needs would be beyond me to cope with now, I know that, and I need to be confident that the nursing staff are competent and able to meet those needs.
     
    I wish the same for Ray as I do for Mum, that he kept clean, comfortable and in no pain. In addition I want him to be allowed to join in the activities available as much as possible and for as long as he is able. We were laughing today in the courtyard about our menfolk playing bingo, probably the last thing they would have thought of doing had they been well and active, but it is a time of fellowship for them as they are all seated together around a long table and given treats as part of the afternoon’s activities.
     
    The leisure activities put on by the diversional therapist and her assistants are all about filling in time and keeping depression and boredom at bay. One of the fellows found himself with a group of ladies sorting squares for rugs. He was apparently quite good at colour co-ordinating and the ladies enjoyed his company. He is a real old English gentleman and enjoys whatever company he finds himself in. It is often not about what you do but who you do it with.
     
    Perhaps the life Ray lives now would seem trivial to some but think of all we do in life and communicating with others in whatever way is possible is certainly one of the bonuses of our existence. Ray is now truly retired and I hope will find pleasure in being at leisure for whatever time he has left. He seems happy enough now and that gives me peace of mind too.
  21. swilkinson
    Christmas was the final straw I think, too much work, too little return as usual. I don’t know why our family must do it all, Christmas Eve, Christmas Day, Boxing Day all seemed full and Trev and I had a big argument this morning. I guess we have tried too hard to play “happy families” when we have a feeling we are all on the edge of a Black Hole.
     
    To me, with Ray in care now, it was a real effort to do family Christmas when all I really wanted to do was sit and cry for Christmas’s past, for the end of family life as we have known it and what we all have lost during the course of this year. For those who have your loved one at home it must be hard to comprehend that having your loved one in a care home does not seem easier or better. To me it seems like flying an aircraft in a thick fog, you know you are not in control but are desperate to land your life in a safe place.
     
    I have been holding back on so much emotion, trying to stay calm as my house is reconfigured to take in three extra people. Yes, I do want to help them out by having them here so they don’t have to pay rent. No, I do not want things so changed that when I go to the cupboards they have all been changed around so I don’t know where anything is now. I want parts of my home and parts of my life to remain unchanged so I can cope with all the things that have had to change whether I liked it or not. And I don’t think any of my children understand that.
     
    If the timing for this move is wrong then I guess they will move off to another rented house and I will rattle around here alone until such times as I decide to move. If it does happen to go that way. If I can’t keep up the expenses on my own, if I can’t find tradesmen to deal with some of the problems the house has developed, like the main toilet cistern broken, then I will have to do a fix up I can afford and sell it. It is hard to look after a family home by oneself on a single income. All of Ray's income goes to keep him in the Nursing Home and part of our savings too. It is not cheap now.
     
    On Christmas Eve Trev was very tired, it was a humid day and he had to work till 1pm. Then he came home and was busy getting the main areas of the house free of boxes, not an easy task as there were still quite a few of them to move. In the end it was done and I hoped we could all relax. Lucas and I went off to a Children’s Christmas service which went quite well and I was proud of him for the way he looked after the little ones at church.
     
    Christmas Day itself was quite good. I think the idea of having lunch with Ray was good, but I think affected all of us more than we realised it would. Lucas and I went to church first while the other two did some preliminary cooking. We went together out to have lunch with Ray. It took us 20 minutes to locate him as he had self-propelled himself to the very end of the building and was in someone else’s room. This seems a frequent occurrence now and is his stroke-affected version of being a dementia-related wanderer. The staff members are good but with few of them to be spared to look for him we had a fruitless search until someone finally located him.
     
    The lunch was adequate if not plentiful (old folk’s portions) and we then had a cool down time under the trees out near the park at the back of the facility. There was some false bonhomie, there was no spirit in any of us to try and make it seem anything like the Christmas we hoped it would be. We got gifts for Ray but he just looked puzzled as usual and there was no feeling that he did know what day it was or the significance of our visit.
     
    As soon as we got home it was straight into preparations for the evening meal. I think the ideas of what we wanted to do in catering for the meal was a bit ambitious for the time we had. We did manage to burn some vegetables and by then realised we were about an hour out with the meat dishes. Yes, we should have kept it simpler. I know that now, but then three kinds of meat and about five vegetables plus sauces and gravy seemed doable.
     
    Finally the rest of our family arrived and it seemed to be Christmas at last. I am not happy until the family, or as many as can come, are assembled because Christmas is about family, about being together, or anyway it is for me. But without Ray our family was not complete. I just couldn’t get away from that fact. Shirley and family had called over to see him on their way to us and I could see she had been crying so I guess the changes in him had brought her to tears.
     
    The rest of the evening went well, we had Shirley and family stay overnight and in the morning we all had breakfast, some talk and they went about 11.30am back to Sydney to pick up Craig’s Mum and take her away for a week’s holiday. She is a widow and loves to spend time with her grandchildren and beloved son. I will be down visiting them at the end of the month the grandchildren get to spend some time with both of their grandmothers.
     
    The next day was normal activities for me, Trev and family were at Edie’s Mum’s place as it was her 60th birthday and her family had gathered to make a fuss of her. Good for them, so they should. Today was not a good day as again I think everyone was overtired and cranky and so Trev and I had the argument. I am not sure this multi-generational household is going to work out. Too much strain on relationships when people live too close can cause big rifts in a family and I would rather not go there. Lucas being hyperactive is an added problem.
     
    Yesterday I did have a good encounter though. Ray’s younger brother finally did his visit to Ray and arrived just as I got there so we three spent about half an hour together out in Ray’s favourite spot in the courtyard near his room. It was all a bit awkward at first but at least he kept his word and visited Ray over Christmas as he said he would. For a non-coper this was a pretty big deal. He is a nice fellow, just not that empathetic.
     
    I am not sure about the future. Yesterday Ray was missing again and when I found him he was missing a shoe. These are special shoes as they fit his brace, he was still wearing the brace and one shoe. Today he was in bed when I got there and the shoe had not turned up. I will have to see if I can find another pair the right fit without having him physically with me. Without a pair of solid shoes he can not take part in activities or go out on the bus.
     
    Seems like we just lurch from one crisis to another, doesn’t it?
  22. swilkinson
    This is my first year with Ray in the Nursing Home; he went into care in September though he actually left here on 13th June to go into hospital. I wrote letters in all the Christmas cards to say what had happened, where he is, what I still do for him etc. I was not surprised when the cards came back addressed to me as only my name was on the back of most of the ones I sent out and I finished "from Sue" or "love from Sue and Ray" as I think Ray would express that love if he could. He really can’t now as he is more and more showing signs of being locked in.
     
    I go to visit Mum and I know she is locked in almost completely now. I took Lucas to see her yesterday and I could see he was uncomfortable as certainly she and the people in the lounge room with her are all close to death, sleeping, moaning a little in their sleep etc. We did wheel her off to “church” which is held in the main lounge room and shared with the hostel people. There are usually about fifty there and the little chaplain who is disabled herself and comes in in her powered chair does a very nice service.
     
    Lucas asked me if my Mum understood any of this and I said we really don’t know. I know she can still hear and occasionally tries to communicate with me. Lucas told his Mum: “It was so sad, her mother was trying to communicate with GrannySue and she couldn’t, isn’t that sad?” And it is very sad indeed.
     
    When I visit Mum now she is mostly always curled up in her comfy chair. She and two of her room mates are shifted out of their room as soon as they are up and dressed because the fourth, a younger woman, screams out and swears a lot which disturbs the other three. Mum mostly has no responses but sometimes does her mutter, mutter talk, almost under her breath, not always sleeping as she may have some very short periods of alertness. She still opens her mouth and swallows food; she still drinks, though more like a baby sucking now. She responds to sounds, particularly music and to some light stimulus, which is about all her reactions now.
     
    She and two of her room companions in her Nursing Home four share room are at the same stage so when I arrived early in the week for a visit all three were side-by-side in their comfy chairs in one of the lounge areas sound asleep. They really looked like three babies in bassinets, all curled to the one side.
     
    Mum has had a few near death experiences over the past two years but one day will die of close to natural causes I should think. It is all in God’s timing but for those of us waiting here on earth this journey of Mum’s with Alzheimer’s seems to have lasted a lifetime.
     
    I've already been called to Mum's bedside a few times when according to the nursing staff or a doctor she was definitely dying but there she is, still going. I don't have any hang-ups about death, in my volunteer chaplaincy I often sat with the dying. I guess when it is actually your own Mum and you sit for hours and hours watching the person you love gasping for breath or receiving what is obviously going to be their last medication it is more difficult than sitting with a stranger.
     
    Mum has been through the "scattered thoughts, scattered language, shuffling walk and bedraggled appearance" stage. She has been through the "muddled, mumbling, hardly walking, falling down" stage. Now she is clean, tidy and mostly sleeping, I think a visit is much more painless for me, sadder of course too to think I am missing that last stage much more than I thought I would and longing to hear her voice once more.
     
    Mum is beyond needing to be protected even as no-one wishes her ill or is likely to want to harm her. The nursing staff is in a routine with her and just sees to her most basic needs, for her to be washed, fed, kept clean and dry, sitting or laying out in her comfy chair. She is fed pureed food and thickened drinks. It is strange that in a way her life now is so peaceful. I would not have imagined it would be so with so many stormy passages behind us.
     
    It has been a long, long journey with Mum and sometimes I have prayed that she does go to sleep and not wake up but she obviously has a strong heart and she is waiting for something to signal the end for her, maybe that “gathering of the angels” that some people see at the end of the journey.
     
    Emotionally I do feel like a widow and an orphan. I visit Mum in her Nursing Home, I visit Ray in his. I can't look after either of them alone in the stage they are up to so that is another fact. I try to be realistic about what is happening and reach some kind of acceptance of it.
     
    My official status is married, separated due to illness. That is why we each get a single pension now. The fact is the factor here. And of course I am not an orphan; my dear Mum is still alive. With the Christmas season here though I do feel lonely and very bereft of companionship in both cases but that is to be expected at this stage, everything is so new and emotions are still raw about the needs Ray has now that have separated us.
     
    Despite all of this I am still trying to organize a “Happy Christmas”, Trev, Edie, Lucas and I are having Christmas lunch with Ray at the Nursing Home, then Shirley and family and Steve and his children will join with us for a sit-down Christmas dinner. Trev, Edie and I will spend a lot of the afternoon cooking but that is part of the fun too.
     
    Happy Christmas to you all from Sue, Ray and family.
  23. swilkinson

    respect and love

    By swilkinson,

    I have received a lot of Christmas cards this year. I send out a lot so I get a lot. Most people are polite and send out a card in reply to one they receive. In the cards I sent out I said Ray had gone into a Nursing Home now and briefly outlined the traumas we had been through. None of the cards I received expressed concern or sympathy at our life changing circumstances; even cards from close family were simply signed “Love from xxx and xxxx”.
     
    I often wonder about the value of the cheap love we give away. We go to social events and get air kisses instead of genuine warm hugs, we text “luv u” or say “I love you” and do nothing to show that we genuinely do love people. Love is a work not a word. Love is expressed in doing and being with, not saying they are “there for you” and walking away like most of our “friends” and family have done since we began this journey with stroke and dementia.
     
    I am busy moving my goods around the house, into storage, into the recycle or the rubbish bin. I have been doing this for 8 weeks now. It is heart-breaking work in a lot of ways as it is like moving away from my own life, saying goodbye to the past Ray and I shared in this house for so many years. In some ways I feel as if I am throwing away the life Ray and I had together. I know that life is finished but I still want to cling onto that one last hope that he will be back here one day. But to do so would be living in a "Fool’s Paradise". So this is another part of the journey to Acceptance.
     
    I have several motives for moving Trevor and family in here with me. One is to save them rent money so that they can save up the deposit for a house now. They need $50,000 to just get into the market and put a deposit down on a loan. Stamp duty alone is half that. Here we have very high prices to contend with, we live in a lovely coastal stretch, beautiful beaches and lakes close by, great climate so everyone wants to come here. It is a retirement destination for people leaving the cities behind and making a “sea change”.
     
    For the first home buyer the taxes are crippling. The first home buyer’s concessions have just ended. They have been big concessions including waiving stamp duty. So Trevor and Edie were really too late into the market to take advantage of those concessions. Trevor didn’t have a steady enough income before to get a loan, he was self-employed, his small business career had nothing to do with guaranteed income. He has gone back to his trade as a fitter so he has guaranteed income. Edie works in the public service so she has a steady income.
     
    So the three of them are trying to pack down too, moving out of the small house they have shared together for the last twelve months. It is uncomfortable to say the least to see how much we are throwing away in order to make this work. For them and for me it is about compromise and making sacrifices and adjustments. I thought at first it was about clearing out two bedrooms and letting them in here but of course it is about the kitchen, the bathrooms, where we sit, what we eat, who cooks, how we work together and how we get some time away from each other.
     
    Add to our problems the great news that Edie is pregnant and expecting another child in June and of course the fact that she has some morning sickness and the moodiness that pregnant women have. Take into account the changes that have happened in Lucas’s life and the way he handles it is walking away, being uncooperative, in fact being a nine year old. No “instant happy family” just four people trying to make some adjustments so they can live together reasonably well.
     
    And I still have spend a lot of time away from the house to visit Ray most days and do the visits to Mum. There is still shopping and housekeeping to be done and as it is my house the yard work is mine at least for a while. I will have to make some compromises there too as we have a trampoline to fit in and a swing to put up and Lucas needs running and jumping room and I need to decide where some of the pot plants that are in the way are to be moved to. Only keen flower people would really understand that dilemma.
     
    For the past eight weeks it has been constant change. We pack some boxes away, they bring some more over and we pack them away. We throw things out only to rescue something we thought we didn’t want but we do. I think we all thought this combining of two households would be so much easier than it has been. After all we all moved originally didn’t we? It is not as if we have never done this before, but before we each had an empty house to move into.
     
    We have all had to exercise a lot of restraint. For Lucas this has been hardest as whatever he is thinking seems to come out of his mouth, he does not as yet have a social filter. So he is constantly in trouble for disrespecting his elders. It is very hard for a modern day kid. I think we will all settle down together, we just have to get over this initial shake-down period.
     
    So we have to practice a love and concern for each other we often don’t feel. We are family as well as house sharers. We need to make compromises that will last and make decisions based on the common good not just on what we personally want or need. It is a BIG learning curve for us all.
     
    As part of my Christian witness I did telephone counselling with a Uniting Church organisation called Lifeline. It was set up as a suicide counselling line but also became a general place for people to feel safe venting about all kinds of matters as well as asking for help, support or advice. Consequently I have heard stories of relationships that would make what we read on the board here seem simple.
     
    It is hard to be a family in this world we live in, hard to be fair to others when we want what we want and we want it NOW. And of course there are people in our own families who put themselves first and never give a damn about anyone else, isn't that so? It is easy to shout: “But what about ME?” when we have needs. We may even know others are barely making it through the week but they SHOULD, we think, make us their first priority. Well, I know for sure, from hearsay and from personal experience that is not going to happen.
     
    I’ve said before my Dad used to say: “if you need a helping hand, look at the end of your arm” so it is sometimes self help or no help at all. If someone else comes alongside to give you a helping hand that is a bonus. It is not fair to expect others to put aside their lives and give their time to us. Of course some do and we have to be grateful for that and I do mean grateful, singing their praises, giving them thanks, promising to return the favour when we are able.
     
    Being thankful is a wonderful thing but showing our thanks is better. It frees us from that heavy feeling of obligation and allows us to resume an equal standing with others. We are not the “poor in spirit” when we return the helping hand or “pay it forward”, we are also in the band of helping hand heroes. A simple “thank you” as long as it is heartfelt and sincere is often enough but a follow up of cheerful friendliness is even better. We do OWE something to those who help us and enrich our lives. At times that is simplified if in return we give those who help us our respect and love.
  24. swilkinson

    Christmassy happenings

    By swilkinson,

    There is always bad news this time of the year. It is in the media and on the news. It is in the Christmas card from the person you didn’t receive one from last year. A lot of people just can’t manage to send out cards the year of the serious illness or family death so you don’t know about it till a year later. The news may come by phone or even be told to you by a third party. It all seems so much worse at Christmas time too. Why is all this bad stuff happening in the season of good will and glad tidings? No wonder we feel disheartened sometimes in the Christmas season.
     
    I have had my share of bad news already so I won’t list it here – marriage breakup news from couples who seemed to have a good marriage, friends sharing a devastating cancer diagnosis, even a bankruptcy, all sorts of things are happening around me. But so far the change for the better in Ray since the adjustments to his medication and the course of antibiotics seems to be holding and Mum was okay on both my visits to her this last week. You’ve got to be grateful for the small blessings.
     
    On 9th December it was the 21st anniversary of Ray’s first stroke. I think I have touched on the circumstances in other blogs. We were up in Queensland visiting Ray’s older brother. His brother had promised a friend that when Ray came he would help build a play house for the other man’s daughters. Ray was already tired from travelling for a full day and a half to get there. He still got up early in the morning the next day to measure up the job and then he and his brother set out with a list of requirements to buy timber, paint and fittings.
     
    Ray felt dizzy in the hardware store and started walking holding onto the wall. When he spoke to his brother it was in a slurred voice and his brother told him to stop clowning around. Then Ray started to stagger and his brother realised something was happening and took him to his own doctor who realised it was a stroke, rang an ambulance and Ray was taken to a large hospital about 40 minutes drive away. Imagine my shock and horror back at my brother-in-law’s house when the doctor’s receptionist rang to tell me what had happened!
     
    Ray finished up being in hospital for only six days in Queensland and then they told me to drive him home. I did so but realised Ray would need to half lie down in the back seat for him to travel comfortably with his vertigo. For a 600 mile trip it was pretty harrowing with me driving his van for the first time. His own doctor here contacted a neurologist right away and we went onto the medical roundabout for the first time. Many different tests, trials of various medications, six months of stroke rehabilitation aimed at his return to work, the actual return to work part-time, then full-time. And 8 1/2 years later strokes number two and three.
     
    It is hard for me to pass these stroke anniversary days and with Ray having six strokes there are six stroke anniversaries. It takes some effort to keep my spirits up as an anniversary approaches. It is only when it is over that I can settle back down again. Traditionally since that first stroke in 1990 I haven’t posted Christmas cards off until after 9th December, in case as I did back then, I have to telephone bad news through to his relatives before they have had time to open the cards.
     
    I have been very busy this past week as in addition to other things I have minded the two little boys, my older son’s children, for two days. It was quite a while since I had minded them but they were happy to see Granma and by much patient telling I got them to behave reasonably well for me. I love to play with them and playing ball and gardening outdoors was a big hit this time. The house they have moved into recently has a large yard out behind the house and a wild garden so we did quite a bit of weeding, moving pots etc to make it more user friendly for the children.
     
    I have started to make some small changes in my life. It is hard to do but I must. There is no going back to how life was in 1990 when Ray had the first stroke or 1999 when he had the two majors so I really have to look at the widows around me and see how they cope alone. I may be a married woman but with Ray now living in a different place to where I live I do in fact live much like a widow does. So I have decided that I need to live on a small amount of pocket money so I cannot do a lot of nights out, joining women friends instead for coffee or a light lunch. The money we saved for our trip around Australia is long gone and my retirement fund will pay towards Ray’s care needs.
     
    The Christmas tree is up but so far there are no presents under it. That should happen next week as I shop, wrap and pack them and pile them under the tree. I am hoping that the family plans don’t change and I get to see and spend time with them all. We should try to make Christmas as merry for the children as we possibly can. It is after all mostly for children that we do it.
     
    Today I debated what Santa might bring to the little boys, of course the toy catalogues are prized and carried around and they want one of these, one of those, two of something else. Their bigger sister said she is happy with a book or a game or some clothes, she is easy to buy for but what I am going to get any of the adults I don’t know yet. Mum I will get a couple of new bright tops and a dress. It is her standard gift.
     
    I went to Ray’s CH Residents and Friends dinner on Friday. It was a bit disappointing as we sat at tables for four instead of six as in the dining room and I didn’t know the other couple. Luckily I am pretty outgoing and in the end we got a conversation going. The food was not very imaginative, and very small servings. As we are also going there for Christmas lunch I am hoping they are a bit more generous then. But in the end it is just being with Ray that counts for me.
  25. swilkinson
    Life is very demanding with all there is to do before Christmas. Today I was on ticket selling again for Lions in the shopping centre and I am back there on Thursday doing to same. I am fitting in visits to Mum and Ray and all the other things I have to do between that and the pre-Christmas get-togethers for the groups I belong to. Most are simple afternoon teas but I still like to attend as we break now and don’t resume again until February.
     
    My middle son just added to my busyness by asking me to babysit twice for him this week. His wife has some day shifts and he is on call for his job. I did agree to do one but not to both. Sorry family, I am just beginning to get some freedom and not going to have someone else take it off me again so soon. It is easy to look after Lucas here as I am on the premises anyway but different if I have to take on the two little boys for nine hours.
     
    There are plenty of parties on but I decided about half of what was on offer was viable. This is the first year for twelve years I have been able to decide what I want for myself instead of what was viable for Ray. But he would have been able to go to all I have chosen as they all have been in disabled friendly venues, it would have been the hours that would have defeated him, he was increasingly tired even before the last stroke and is now in bed for 14 - 16 hours a day/night at the nursing home.
     
    Both Ray and Mum had an “event” last week. Mum’s was a day when she didn’t have the strength to get out of bed which is happening to her more frequently now as her body winds slowly down. Ray had a fall out of his wheelchair, pitched out on his nose. It may have been a TIA as he was fairly sleepy afterwards and much less alert the following day and for a couple of days spoke less than a dozen words. This is like other times, so nothing new.
     
    Tonight the Christmas tree went up here, none of my doing this year as Lucas and his Mum did the work. It looks very nice all lit up and I know he is very proud of it. He is finding it hard to make adjustments to his new routines here. We have had a few arguments but hopefully that will subside. I do like as peaceful a life as I can get.
    I spoke to my daughter and her family by phone and they are well and organising their last minute events for Christmas. The Salvation Army is renowned for its band music and apparently they have a few engagements in their local area. My grandson who is just turning twelve plays trumpet now. He found it hard to learn to play well enough to join the band, it has taken him three years, but he is now one of their proudest members.
     
    As I went in to see Ray today a group of school children were coming out. They had been singing Carols in one of the bigger leisure areas. Ray loves to see children participating in musical entertainment; I think it reaches back to his own school days. The organist on Sunday was playing Carols too. The area Ray is in is well decorated without being too obtrusive, I guess with a lot of dementia patients they have to be a bit careful of how everything is placed.
     
    I have never forgotten how my Mum “ate” the decorations one year in her Dementia Lodge. The tree was loaded with egg shaped decorations in deep reds and deep purples. It must have looked like a plum tree to Mum’s confused mind so she took each decoration off the tree, had a bite into it and dropped it on the floor. A tree full of woody plums she must have thought. How lucky she didn’t lose a tooth in the process eh?
     
    I finally have my own computer up and running at least (yeah!!!) but will be at my other son’s place when it is Tuesday night your time, Wednesday noon mine. I was reluctant to go to babysit for that reason, I’ve already missed enough chats for one year, but he assured me his computer will do as well as mine. I am hoping no major crisis occurs while I am on chat. The little ones should be sitting down eating lunch during that time as I have asked for lunch boxes to be prepared for them.
     
    My big prayer is for safety and good health for us all in this multi-generation household. Lucas has his cast off his arm at last and so can do so many more exciting, reckless, dangerous things. And we all know what carnage on the roads the combination of Christmas parties and summer’s stormy weather brings. Hopefully with Christmas coming fast all will be peaceful and calm for us all.