swilkinson

Staff - Stroke Support
 View Profile  See their activity

  • Posts

    5,426

  • Joined

  • Last visited

 Content Type 

Blog Entries posted by swilkinson

  1. swilkinson

    the waiting game

    By swilkinson,

    For the last few days I have been trying to make some decisions about what is best for Ray. I have seen several social workers and looked at what he needs to come home etc. I have had a new toilet put into our bathroom and discussed with our son whether it would be feasible for him to move back in with his family so he could help with Ray. That would be a major shakeup for all of us, fitting five people into a very small three bedroom house. All in all I have done everything I thought I needed to do. Now I just need to relax and let whatever will happen, happen.
     
    I’ve noticed lately on here the cries for help often include the phrase “what will I do now?” The answer is often simple…wait. We all need to give our brain a chance to heal if we are a survivor, our minds a chance to sort things out if we are a caregiver. Some things you just can’t hurry. It is a bit like having a baby - about half way through we would like the process to be over, finished, the baby out, our lives back to normal. Ha! Ha! As if that is ever going to happen!
     
    So tonight I pledged once more to just look after Ray as best I can, no program, no schedules apart from those we have to make for medical appointments etc. We will just live out our lives one day at a time with him home in the home we share, the house he built. It is a lovely thought, whether it is a practical one or not remains to be seen and whether it can be lived out which is more to the point.
     
    Today I had an interview with the social worker to get the care lined up. She noted all of Ray’s conditions, past and present, his long battle with strokes and diabetes over the past twenty one years. She had a picture of Ray as he was, as he is now and then she interviewed him. Now the findings go to her boss who makes the final decision, she says I will hear from her by the end of next week. Ray is hopefully to go to the Transitional Care Unit and get some more intensive therapy.
     
    Isn’t it strange that so much of this is out of our control? One person decides this, another person decides that - doctors, specialists, social workers, therapists all have input into what happens. We always find ourselves on one waiting list after another. We have dates to stop and start physio, medical procedures scheduled, blood work due etc. Nothing we can do can alter the outcome and yet it is our life that it affects? In this case it is how Ray progresses that affects if I can care for him adequately or not. I wonder how we got on before so many other people were in charge of our lives?
     
    For me it is time to move ahead, getting things ready for Ray to come home. The present therapists tell me that I will not know what I need until Ray’s discharge, as we don’t know what he will get back. It is like after the 1999 strokes with other people doing what they can, me doing the waiting. The problem is that life has moved twelve years on since then and now it is ageing as well as diabetes, strokes AND dementia we are dealing with. Ray isn’t the fit young man he was when he had the 1999 strokes, nor am I that younger woman easily dealing with all the problems involved.
     
    Today I went to a funeral, the person was in their mid-70’s and died of cancer, he was whimsical, had a real sense of humor. The church was packed with people from a lot of different walks of life, which is how it should be. He had lived well. At the end of the funeral which was pretty solemn we walked out to Perry Como singing “Catch a Falling Star” I know the words as it was one of Mum’s favourites, she had that album of Perry Como’s and one of Dean Martin’s long playing albums as her cheer up music so we heard it frequently. The song finishes up with the words “save it for a rainy day” which seemed so appropriate with the rain falling down in bucket loads outside. Maybe I will make that Mum’s last song too. She really loved it.
     
    Mum’s room mate died this morning, the lady who had just had her 104th birthday on Monday. That is a long life. She had shingles recently and said she was finished with life and wanted to die. Mum had shingles 20 something years ago and said the same thing then, it is a painful disease. So next week I will have to go to another funeral as she was from our church too. I guess we lose a lot of our oldies in winter.
     
    It is a bit eerie being on my own for so long with Ray away. The wind is whistling around the house and the rain is falling down and it is all muddy and slushy and just the opposite of summer here. I wish you could send me another sunny day as I hate the gray, dull days of winter. I told you all when you were complaining in January that I would say the same thing in July.
     
    Thanks for listening to my sad sack stories the past few weeks. I know there is nothing anyone can do about all of this, as I said – it is a waiting game.
  2. swilkinson
    I went to see Ray today and at last they are seriously thinking about stroke recovery. The physiotherapist suggested that Ray be moved to another branch of the same hospital where there is more room for rehabilitation and more therapists. Now the broken shoulder/arm is considered healed he needs regular OT appointments to see if they can stop it from flopping down at his side and get some muscle strength back into it.
     
    Where they are sending him is a building on the site of the old Woy Woy Rehabilitation Unit where he went for rehabilitation for his 1999 and 2001 strokes and the hip break in 2000. The old Unit was closed but eventually redesigned and re-opened as the need was still there for rehabilitation for the over 70s who need rehabilitation to return to their own homes after hip replacements, strokes and heart attacks and anything else that would require physiotherapy to get them back on their feet.
     
    Of course as always there is a waiting list to go onto. In the meantime they will do what they can where he is. I must say I was more impressed today when he took his ten steps as at least he was upright and seemed to have the left leg more under control, no violent shakes or wobbles or erratic leg movements. On the other hand he still had two people clinging onto him and helping him stay on his feet. It is definitely an improvement from a week ago.
     
    With the transfer to the Transitional Care Unit there is also a co-pay so as well as the extra transport costs and time spent traveling to and from the facility, 45 minutes drive from here, there is also a cost. Never mind, the days of “free medicine” are long since gone here in Australia. We can afford the costs, we don’t drink or smoke or go on extravagant outings so the money is there to pay for his care. I just have to forego emptying out my entire wardrobe and buying in the new spring fashions…lol.
     
    Once again Trevor and I are discussing the how, when and with whom of Ray getting to the wedding. I wish I knew where we would be transporting him from… I know the where to and the possible who with but it depends on whether he is walking, wheelchairing or if someone has to pick him up bodily and put him in the car. The last suggestion was Trevor’s who thought we should borrow a trolley from Steve’s workplace…luckily didn’t suggest a coffin to go with it or poor Ray might have declined the offer and decided to stay home!
     
    Ray was much better today when I visited. The aspirational pneumonia he was diagnosed with on Friday is responding to the antibiotics, his color was good, he was not doing heavy breathing and his chest was not squeaking. Mind you that just means today was a good day. There is no guarantee for tomorrow is there? With stroke recovery it is always strictly one day at a time and no second-guessing what the future holds. For today I was pleased with how he was, how he looked and the fact that he did actually respond to me and to Trev when he dropped by for half an hour or so.
     
    The bride is still busy getting the alterations made to her dress, seems the main topic of conversation at their house. I was there Saturday night for the spicy chicken wing feast and stayed on afterwards talking for a while which was nice. It is all very exciting now, as it gets close. I am glad we have this to look forward to as it somehow makes the ups and downs of Ray’s recovery seem less impacting. It is a very good distraction. Three more family members coming to the lunch afterwards as Edie’s brother who had been estranged from the family will be there with his family now. It is lovely that this event has brought them closer together.
     
    I am now seeing all of Ray’s recovery as being a long term project as the past strokes have been. I am hoping there is a recovery, some regaining of the movement and comprehension that seemed to disappear for a while. He is beginning to seem more like himself, six weeks down the track from the stroke. I guess I should have remembered that it takes at least that long for things to settle down. The chest infection and broken arm/shoulder were just complications as was the recent aspirational pneumonia. Now we need to get back to the main game!
     
    Mum and her companions are out of quarantine so lets hope things balance out there too.
  3. swilkinson
    This is a grumbly kind of blog. The skies are gray the day is cold and I feel blue. I went into the hospital yesterday to see the physiotherapist who has been working with Ray, she had gone somewhere else (she also works in the community rehab team) so I couldn’t see her. Nor could I see Ray as he had gone to have an xray of the humerus to see if it had healed enough for him to do more walking etc than he has been doing.
     
    I went into to see Ray later and he wasn’t talking to me. He was sitting up in bed with his eyes firmly closed ignoring me. I guess he had been taken to the hospital, wheeled somewhere until it was his turn to be xrayed, returned to the same spot until it was time to come back to his present place. All without being able to eat or drink or even asked about anything he may have needed. With his present lack of initiating speech I guess that is hard on him. If I had been notified I could have gone in and kept him company. He is now officially listed as having aphasia.
     
    Today I again tried to see the physiotherapist again, this time she was away on a course and will be for the rest of the week! So I have no way of knowing how Ray is doing in respect to standing up, walking a few steps and sitting down. I feel as if I have been left out of the loop again. This is in a hospital plastered with signs asking: “Are you a Carer? We value you!” sure they do.
     
    So I asked the nursing staff if someone could measure Ray and let me have a waist measurement. I need to know what size clothes he will fit into for the wedding, which is less than four weeks away now. I have access to a couple os suits that may fit him. I don’t think he will be able to do much but a hired wheelchair taxi to the service venue; a taxi to the lunch venue and a taxi home or back to the hospital is what we are planning. An expensive solution but I doubt they will have him to the stage where he can bend down and sit on the car seat. That will have to come in the home stage if there is one.
     
    You can tell that I am beginning to lose hope now. I keep asking for prayer and I am praying for a miracle. I spend my time cheering Ray on, talking to the staff about how this all might be accomplished. The staff are very non-committal and I am getting strange looks and I think that in the end someone will be appointed to have a serious talk with me and that will be the end of my planning to get him home. I hope that I am wrong but no-one is telling me anything positive and Ray himself is just sitting, watching tv, eating, having a nap, no signs that he is enthusiastic about doing some exercise to make it possible for him to come home.
     
    I might be a little vulnerable today as I had an upset tummy last night and didn’t get much sleep. I shouldn’t be worrying….well maybe I am, sub-consciously because I am trying to remain positive and picture him home here with me. It is a big ask, coming from so many negatives, the stroke, the chest infection, the broken arm – to being strong enough to come home again. I do have faith it can happen but so much depends on others, the therapists and on Ray himself.
     
    Like all caregivers I am aware that so many people are worse off than Ray and I are. We do have some assets, like a roof over our heads, a small income, the advantage of medical treatment through Medicare. Though of course due to our budget restrictions we are not able to pay for private care or the equipment we will need to bring Ray home. I will hire equipment and hope that it is for a short time, until Ray gets his strength back.
     
    I am praying for a miracle, I always do, for me and for others. Not a mighty big miracle just the sort that will see Ray making steady progress and result in him coming home once more. And I do mean once as I can see this re-occurring further down the track. Ray is not strong and although I will try to keep him from having falls I know that he can “fall into space” when he is right beside me. So his being here at home will be a day-to-day thing. One day at a time, one hour at a time, one minute at a time.
     
    Sorry for this “sad sack” kind of post but it is where I am at – here at home alone and so sick of being forever a lady-in-waiting.
  4. swilkinson
    There is not much progress to report. There are two opinions about where Ray is right now – one is that he should have been sent to a place with more aggressive physio, the other is that he may not be able to do physio at all until the pain from the arm goes as he is still protective of it. One opinion I can handle, two I find confusing. Where he is now is a little 30 bed former cottage hospital now used as a convalescent home or a waiting place for those going into a nursing home. The good news is today one older lady returned to her own home so Ray can too.
     
    I did see the treating doctor today and he questioned me quite extensively about how we function at home, how much extra care I think Ray will need, how I will go about ensuring that I have that in place (social worker’s job actually) and how long I feel that I will be able to continue to look after him. In most cases I said I have managed before and could do so again except that I will need much more help now.
     
    It has been great having Shirley and family here, and having them visit Ray has been good too as it helps him to widen the responses. He is still not conversing, answering mostly with a yes or no answer, sometimes just falling asleep while we are speaking to him. I understand why the staff doesn’t see why I want him home but I figure as long as I have help to bathe him he can sleep just as well here as there.
     
    I don’t think he is depressed so much as he is resigned to how he is now and incapable or unwilling to make the effort to change the state he is in. I am willing to give that time to change but how tired I get and how long I will be able to continue on with being a 24 hour caregiver I do not know.
     
    Yesterday Shirley and I went to get the Enduring Guardianship papers drawn up, it is a sad task but by putting myself there too I don’t feel as if I am doing something wrong, it is just like taking out insurance, it protects us both for when we can no longer make our own decisions. Unhappily I have to make Ray’s decisions anyway. Shirley is also my Power of Attorney if anything happens to radically incapacitate me. When I tripped and hit my head and almost knocked myself out I thought it wise to make sure someone else could make decisions in my place if needed.
     
    Mum is in a locked-down situation as one of her roommates aged 104 has shingles! I can’t go see her until her room comes out of quarantine. It is such a pity as Shirley goes home tomorrow and she only saw Mum once instead of a few times as she had hoped. Mum is so frail but somehow her heart keeps beating and she keeps living and breathing. Not that I’d have it any other way, when it is her time she will go.
     
    If you passed me in the street right now you probably wouldn’t recognise me as I had my hair permed today. Instead of it being smooth and elegant I now look as if I have a fuzzball where my hair should be but I know it will settle down and in four weeks time will look good in the wedding photos. I do want to make that day perfect for Trev and Eddie, they have been so supportive of us they deserve the very best.
     
    My job now is just to ensure that Ray as Trevor’s Dad is there sitting beside me in the chapel. I hope it is a sunny winter day like today preferably without a wind and maybe a hint of spring in the air. We were married on July 27th and everyone said it was a warm day for winter with a perfect blue sky etc so I hope it is the same for their wedding too. The little bridesmaids etc are all becoming quite excited. Christopher tried on his suit on Tuesday so we saw both him and Trevor looking very handsome. Christopher will partner Tori and Lucas will escort Naomi so all family. I guess some of us will shed a little tear eh?
     
    Thanks to all who are praying for us, it is really appreciated. It is a hard journey, and one that caregivers take alongside the survivor. I think I worry more than Ray does as he has clean sheets, regular meals, someone looking after him 24 hours a day and I just have the worry of it all. I think our family as well as the hospital staff is very skeptical about the cost of caregiving someone with as many deficits as Ray has now. It is reasonable in my mind to give it another try but for how long? Who knows?
  5. swilkinson
    It’s been a busy week, sad in some ways happy in others. I have had my daughter and her family here since last Thursday evening and that has been great. We have had laughter, a lot of time together and traveled back and forth to see Ray. We had the spicy chicken BBQ at Trev’s on Saturday night and also had the rest of the family here for a mixed BBQ Sunday night. Now I have our granddaughter for two days to spend time with her cousins.
     
    So life comes with lots of compensations. The sad news is that Ray had a seizure last week and is still not really walking and will need a lot of therapy to get him back onto his feet. The really good news came at 4pm this afternoon. He has been transferred to a small geriatric unit close to us where the rehabilitation will take place. This is an 80 bed former cottage hospital so very different to the large hospital he has been in. They will work out a rehabilitation plan and work on getting him up and eventually home.
     
    My worry still is that he will have another stroke. I know it is six years since his last one, I also know that in 1999 he had two four weeks apart so there is always that underlying fear. He is so much reduced in energy and capability since the middle of May. I find it hard to see the difference. It really shows that every stroke is a stroke, a cutting off of what life was like before and a re-adjustment to the new situation. He is still on thickened fluids and pureed food which is another retrograde step but I dealt with that before so will do so again. With a little imagination it is not as bad as it sounds.
     
    The hospital visiting has been hard. Sometimes Ray is sitting up, awake and alert, other times he is droopy eyed and more asleep than awake. He doesn’t show a lot of communication skills now and that is a problem with sitting there for two or three hours. I have been able to use the family as an excuse for shorter visits the past few days so that has given me a bit of a break. I do so want him to respond, to look good, to act happy to see us etc but know that that is not going to happen. As usual to Ray we are just passing through his “room” the quiet place where he now lives.
     
    I took Shirley to see Mum on Friday and we had a bit of interaction. The activities officer who went to school with one of my sons was making bacon and cheese scrolls so we got to watch and Shirley got to sample the product hot from the oven. It was Mum’s 93rd birthday on Friday and I had taken in some mousse that Trevor makes and Mum absolutely loved that, I could tell by the “yum” noise she was making! As she too is on thickened fluids and pureed foods only it could not be a birthday cake this year.
     
    A few people ask me how I cope and I tell them the support and prayers of my friends helps tremendously. In my situation it is easy to feel so alone and as if no-one really knows what you are going through. In my six years on Strokenet I have come to realise a lot of people do know what I am going through as they are traveling the same road themselves. A lot of others have passed this way before me and when I am gone others will continue to come on, sad and lonely, looking for understanding, information and support and ultimately, if they give of themselves will make friends and become part of this great community.
     
    I have been involved in self-help groups before but this one is definitely different. We all come on looking for “help”. We do have the build-up of emotions and the need for support and we do feel despair and hope but eventually we also feel relief when we settle down and accept the “new normal” we find in our lives. No one can live with uncertainty forever and so we learn to live one-day-at-a-time lives.
     
    We seek help from the medical community and get pills and potions, therapy and counseling and reconcile ourselves in the end to the fact that no-one know really what is happening, at the best they are making educated guesses.
     
    We have had more pre-wedding discussions and they have today posted invitations to “see Trevor and Edie take their vows” to their friends and more distant relatives. There is no reception, now only a “close family” meal afterwards. It is hard to say what this will all be like but the good will is there to make it all special. Edie will soon have her dress, the little bridesmaids and groomsmen will have their special clothes, the Mums will too.
     
    That special person Pa Ray will appear on the day whatever that takes to achieve. At least that is more of a possibility now than it was a few weeks ago.
  6. swilkinson
    I am in danger of becoming a blog hog…lol. Every day something happens and I think: “I will blog about that.” I think it is because I am really lonely with Ray still in hospital and no news yet of what they are doing to get him moving. I am getting stressed about this now as it is now 28 days – four weeks, since he actually had the stroke.
     
    I went in this afternoon and he seemed fine, he was sitting up and looking scrubbed up. I took that to mean that he had recently had a shower but didn’t ask if it was his second or third in the day. The last bad day was Friday afternoon, something seemed to be going on then as his head was down again and he was doing a kind of stuttering speech where he repeated words over and over. I was really worried about that. There are horror stories of another small stroke catapulting people into severe dementia with no pull-back.
     
    By Saturday afternoon he was speaking clearly again. I was his only visitor over the weekend as Trev was busy and really no-one else is ringing or volunteering to visit this time. His younger brother saw him Thursday and so did Trev and my nephew Bill so he has had others come. It is difficult now he has a short attention span as making a conversation with him turns into a kind of monologue about my day, my week, my activities and a few questions about what he had for breakfast, lunch and dinner.
     
    I have started the process of looking at nursing homes. It is not something I want to do but in the light of his Friday confusion and that he is really not walking yet I am not convinced that he will be able to come home. On the other hand I have also looked at having a second toilet, this one to be put into our existing bathroom, so if he does come home and it takes a while for nature to take it’s course I will have another option…lol.
     
    It is such a difficult time isn’t it? You want something positive to come out of all of this but you have the old doubts and fears returning. There is no-one who can help you go through the decision process as the one most involved is no longer able to make decisions or even help you make an assessment of the situation.
     
    Thank you to all who have sent me PMs, contacted me via Facebook or have posted comments on my blogs. I do appreciate the support you are offering me. I think I am doing okay. I cried a lot the first week he was in hospital not so much last week and this week I have got back to my old stoic self. I know this is a long slow process and I am hunkering down for the long wait.
     
    I went in to see Mum today and watched one of the aides feed her lunch. She is on a well-cooked cut up diet with mashed vegetables and lots of gravy. She opens her mouth for every spoonful, makes an attempt to chew and swallows. No coughing now and so they are including foods not pureed. She has fruit and custard for dessert. Not being a diabetic she can have some sweet foods. She still has thickened fluids as she still has some trouble with swallowing water-like fluids.
     
    Mum has been so well looked after in the nursing home. I was worried about her at first as she was very agitated at being restrained but now she sits in her jelly chair and kicks her feet to music, closes her eyes and has a snooze, looks about her, listens to the TV. It is not as active a life as I would like for her but considering her deficits now with severe dementia it is enough. And when I am there I take her for a push around the place, into the sun if I can and make sure I sit close to her and talk to her and do things like hand massages. It is a pleasant way for both of us to spend some time together.
     
    I know the experience with Mum will not be duplicated for Ray. He still has a lot of awareness and although he is physically unwell at the moment if that changes then he will wonder why he has to be in a nursing home and why he isn’t at home with me. But once he is in a nursing home and I have signed all the paperwork and paid out a great deal of money to get him there the decision will be irreversible.
     
    I am finding all of this very hard to deal with. I would like someone else to make the decision and say that it was the obviously right thing to do. I know people keep telling me I cannot sacrifice my life and my health to keep him at home, and part of me agrees with that. The logistics of looking after a man who cannot walk or help himself if you are not trained for it or set up for it are very demanding.
     
    But some part of me keeps remembering:“till death us do part.”
  7. swilkinson
    I hate going in to the hospital every day. It is easier in the car although there are a lot of road works between here and Gosford. I try to work out when there will be less traffic but sometimes get it wrong…lol. Today Trev took the car to get a new battery and a service before it is re-registered so I went on the bus. Not an ideal day for it as it was cold and windy.
     
    Ray has won his battle with the chest infection but still has the cough so the speech therapist is working in that. He is still on level two fluids so off the thickest ones now. The physiotherapists came to walk him today and his walking is terrible, they used a rollator for him to hold onto while they propelled him forward using a gait belt. It was intended to focus him forward but the cornering was so erratic I thought they were going to drop him and another nurse rushed in to help. He did walk as far as the door, maybe 20 steps all up, so that was something.
     
    He has slipped into a dependent pattern. One of the aides fed him his lunch by the spoonful until another one came in to tell her he must feed himself with her looking on. They are trying to get him to be aware of his left side again as once more he sees only the right side of his nose. His dangling left arm they are putting down to “locked-in syndrome” saying that the brain is isolating it to protect the damaged area. This means he may lose elbow and wrist movement if he doesn’t use it soon. I find all of this very scary.
     
    I had two reports from visitors yesterday, my sister wrote on Facebook that when she visited he was in “good health and good spirits” and my sister-in-law rang to say that when his brother visited last night he was very sick, couldn’t hold his head up, had an episode of incontinence, seemed unable to focus and the b-in-law was in tears on the phone. Maybe it is because he hasn’t seen him for three years he noticed the difference?
     
    I asked about the staff about the incontinence and there is going to be some effort made to re-teach him to use the urinal. At the moment he is incontinent in both kinds but they are hoping this will improve. They are saying as we all say here it is “early days” yet. I can see that this stroke has taken a lot from him and don’t know if he has the energy to fight back now. We have done this so often now we are both tired of it.
     
    I watched him put through an extended version of the mini mental test. He had no idea where he was, the day, the month and the year. His short term memory is obviously gone and yet he was okay with the maths part of the test, could take 7 from 100, 93 etc backwards about six levels, draw the clock face and remembered a simplified address after a few promptings. It is strange what you lose and what you retain after each stroke.
     
    The psychologist thinks he will manage the rehab program as she thinks he has the ability to retrain. I think she is a bit optimistic but if they are willing to fund it I am okay with that. Luckily there is a big push to keep people with dementia in their own homes so I can probably get the help I need. We baby boomers are going to take up too much space in care homes if something isn’t done soon. I will be happy not to put him into care and to bring him back here for his sake but seriously not right now.
     
    It is really heart wrenching to go in day after day and see him now, with the new droop to his mouth and his unkempt look as the staff let him sit around all day in a hospital gown (incontinence issues). I wonder what they have done with my husband and why I am visiting this old, old man. There are very few glimpses of the Ray of even a few months ago. When I visit, morning or afternoon, he sits and nods off. He is very sleepy and when awake stares into space most of the time now. With the warmth of the room and the emotional strain of watching his struggles with his lunch, with the test, with walking etc I almost fell asleep myself late this afternoon.
     
    Ray seems so unaware of his surroundings. He is not able to name where he is or where he normally lives. If I thought he didn’t think of me much before I am sure of it now. His whole body is on slow down and the mind is switched off to what is happening around him. I hope that will change as time goes by.
     
    Sorry for my lack of time and concentration here. When things improve I promise I will be back in mind and spirit again. For now my whole focus is on Ray.
  8. swilkinson
    Sometimes when asked if I want to go back to …whenever... I say “No, I’m fine with where we are now”. But today I just want to go back to a few weeks ago. Anywhere back to where I was standing on that last plateau thinking things had finally settled down and we could maybe do some planning again….
     
    Ray and I went down to visit our family on the south coast, he was well for four days but had a “possible” stroke last Monday (30th May). Our doctor said that was the likely cause of the instability that caused him to have four falls in three days at our daughter’s house. The last fall resulted in his quick trip to the hospital on the night of the 1st June. There the staff did some tests and some xrays and told me he had fractured his humerus at the head and they could do nothing for him and sent us home at 1.30am.
     
    We went to our local doctor today and he asked me to take Ray to the Radiology Centre nearby to get them to do the xrays of his shoulder again as the hospital did not give them to me. The result was the same, large crack across the head of the humerus, just below the shoulder blade. The radiologist commented on the wide spread of bruising and commented he was lucky that that was all that was broken. I think so too as originally we were told the femur was probably broken too as he had a lot of pain in that area. Now he has a large black bruise above his left hip but his leg seems okay.
     
    Ray sat in the doctor’s rooms and fell asleep, he looked terribly tired and at this stage somewhat confused, as if life does not make sense to him any more. I know he has lost a lot of his cognitive powers again, whether or not they come back we will have to wait and see. The most annoying one is that Ray can no longer understand how to stand up. He can stand eventually but I have to explain over and over how to do it, stretch his hand away from his shoulder, steady him, prompt him and do all but physically pick him up. How he could have forgotten this is a mystery, if he will remember again is unpredictable.
     
    Ray is now even more high care. For all of you who have been dealing with a husband that has to be shadowed everywhere he goes - how do you do it? Ray cannot stand alone, walk alone, sit down by himself. I now have to be right there helping him. I have to tell him where I am going and what I am doing so he knows where I am in the house. I haven’t had to do this up till now and already it is driving me crazy!
     
    I had a ring around today trying to get more care. The Australian system is that you have a provider and an amount of hours you can have, you can in some cases use a second agency at a higher rate to give you more care hours, it look like I will have to do that now. I need someone to help me with showering each day as I cannot hold Ray up and wash him efficiently too. Our provider seems reluctant to help me with extra hours.
     
    Ray seems not to be able to stand still, his left leg constantly jumps and he moves his right foot sideways as well. This is another constant worry as it affects his stability. Tomorrow Trevor will come over and help me shower and dress Ray but I can’t ask him to come over every day.He has just been asked to do a second interview for a fitter's job, it would be wonderful if he gets it.
     
    On Wednesday I have an assessor coming who will decide if I can get more care. What a pity the hospital couldn’t have at least helped with some of this. If he had been hospitalized locally I could have asked for a social worker or discharge planner to help, but only if he had been put into a regular ward first. What a useless system for emergency care situations.
     
    Tomorrow I also need to start cancelling our regular activities. I have already cancelled Ray’s Scallywag group activities two Friday afternoons per month - he needs to be able to walk up steps to continue there. I have postponed Daycare for a few weeks until I know if he can get to the bathroom by himself. He needs to at least do that. Tomorrow I will discuss us not continuing to go to Craft for a few weeks, missing a couple of months of Lions meetings etc. It is not something I want to do, it is something I have to do.
     
    I don’t want everyone who reads this worrying about us, or feel sorry for us. I am sure it will all work out in the end. Like most of you I just need to blog it to sort it out, make sure life is in perspective and I am not just sitting here obsessing over it. I am always a forward planner, just now though there doesn’t seem anywhere to go.
  9. swilkinson
    Ray is officially out of danger now as his kidney function has improved and his diabetes is almost under control again. He is on the thickest of thickened fluids but he is still coughing so that is a bit of a worry. He doesn’t talk much, an occasional “yes” or “no”, no extended answers. It may just be that he is in a strange place and that is inhibiting him. The room he is in which is a small triangular single room has a nice view out of the window and they sat him near the window for a couple of days and he seemed happier with the passing traffic to watch as he does at home.
     
    I have been going in every day, paying for parking and today found out that I could have got a “carer’s permit” that allowed me to park for $1 a day for the time he is there, would have saved me a lot of money. It is a large hospital spread over about six four storey buildings so I am only just finding my way around with confidence. I actually did my chaplaincy training there in 1994 but that was a few redesigns ago.
     
    I have been going to stay home for a couple of days and do some re-organizing but can do that when he is moved closer. Once he is in the little geriatric hospital (similar to a SNF) his treatment will stabilize and I will not have to be there to answer questions for the staff. I was hoping to see some of the therapists today but no-one appeared, in fact he did not have any attention at all apart from the general staff. Maybe until he is stable, which he is now, no therapy could take place.
     
    The weather has cheered up so it is not as bad traveling in and out to Gosford. There is a lot of roadwork going on between here and there so lots of hold-ups and very slow driving. A trip that used to take 25 minutes now takes 55 minutes. I hate that slow, slower, slowest driving. It seems like such a waste of time. I keep thinking of everything I could have been doing instead of sitting there in traffic, no wonder the younger ones get caught texting, they are trying to fill in their time.
     
    Trev and Edie are preplanning their wedding on the new date of 6th August. They will have just a family party afterwards and Ray will be there even if I have to hire a couple of aides to be with him. It is a pity all this had to impact so many other people. Trev is just so afraid Ray will have another stroke. At aged 15 he was with us when Ray had the first one in 1990 so I guess that is one reason he is more affected than the other two.
     
    One day life will return back to normal…that new normal that comes after every traumatic event. I can say that here knowing you all, survivors, caregivers and family members, will know what I am talking about. That is why my blog is here rather than Blogspot or some other site because here I am talking directly to people who know what I am talking about and how I feel.
     
    I am sorry my attendance at chat etc has been so erratic, it will be for this week and maybe next and then life should slowly normalize again. That is if life goes as planned…hmmm…where have I heard that before?
  10. swilkinson
    When Ray had another stroke on 30th May it was six years since his 5th stroke. I wonder why they happen when your partner is supposedly on all the right medication, having a balanced diet etc. This one has taken more of his movement away and the use of his left arm is worse, hanging at his side now like a dead limb where before he would hold it up and use his cupped hand to carry things.
     
    The stroke resulted in falls and the falls resulted in a broken head of humerus. It made life a lot harder for me. I was lucky to get some extra help from our services provider so at least he got a shower each week day. But as one of my dementia support group says:"If you get an hour's care a day that is 23 hours without care." I really started to agree with that statement!
     
    Which is why when he had a fall last Tuesday night and was laying on the floor in pain I called an ambulance and allowed them to take him to the nearer of our two local hospitals.
     
    It doesn't seem fair that Ray gets sicker and sicker but that is his story at the moment. Sometimes I get envious of the "success stories" of those who have a stroke, recover and go back to work but that was Ray's story with his first stroke in 1990 aged 48. He had six months off work for rehabilitation etc and then returned to work. The two in 1999 retired us both, me to look after him. Now he has had three more, 2001, 2005, 2011. He is going downhill, the combination of stroke damage and dementia is a hard one to overcome. We do the best we can from day to day.
     
    On Tuesday Ray had two falls one in the morning when Trev came over and picked him up, one Tuesday evening when I sent him off to hospital in an ambulance. When the paramedics checked his blood pressure it was over 220, far too high, he was red in the face, feverish, barely conscious. I am sure they thought he was having yet another stroke. When they asked him was he in pain he described pains here and there. He went in and out of sleep (unconsciousness?) as I have seen the 90+ ones do in Mum’s nursing home, it was really scary for me to watch. I knew that I couldn’t cope here with what he was going through and that hospital was the best place for him.
     
    I followed the ambulance to the hospital. I had taken him to the doctor that afternoon and at the doctor’s insistence, we went to get his chest xrayed. This had exhausted both of us as Ray was struggling to stand and I had to hold him up for the xrays to be taken. He was hardly able to stand at all and seemed very weak and unfocussed. The radiologist had gone home before we had the xrays done so I still don’t know what the report said as I never picked them up.
     
    I knew Ray would not be able to answer questions for the paramedics in Emergency and tell those dealing with his case what they needed to know. I spent until 1.30am in Emergency right by his side by which time they had allocated a bed for him. He has been admitted under a gerontologist.
     
    Because of the seriousness of his condition I was asked if I wanted him resuscitated in a crisis. I really didn’t want to make that decision but had to in case he reached crisis point overnight. It was hard for me to say "no" but I have seen too many people lying unresponsive in a bed in a nursing home to want that for Ray.
     
    Ray's presenting problems this time were chest infection, low oxygen, and impaired kidney function. I know he is in God's hands and pray that all those other hands he will be touched by do so with care and respect. I thought he would find being in hospital hard but you should see the wondrous smile on his face as those lovely girls and young men come in to minister to him. Ray has always loved nurses and once more they surround him.
     
    Yesterday was a crisis control day as they focused on getting him rehydrated and onto antibiotics, looked at all his systems, did bloodwork etc. I was there for six hours or so answering question after question as they try to get a picture of his general health, what he can and cannot do before May 30th, after May 30th. They decided that with the chest infection he would be nil by mouth, that was hard for him but I could see the improvement hour by hour as he got rehydrated.
     
    Today I was told all his functions are “below the red line” which I take to mean much improved. He looked better too. I took one of the church ladies with me to visit and another couple came from our WAGS (stroke support) group so he had quite a party. It was good to see him smiling and with normal colour again. Marvelous what a couple of days on the right antibiotics can do. But I guess we are not in the clear yet. He has yet to walk or weight bear at all.
     
    The social worker wanted to speak to me. She is the one who may advise me I have to put Ray into a nursing home full time now. I will reiterate that as long as he can mobilize (walk) I will have him back home. If he cannot then of course he will have to go somewhere where there is staff and lifters and all that is needed to mobilize him and get him from place to place. It is blindingly obvious that I cannot do that alone if he can’t walk at all. This house is just not built for that and I am in danger every time I lift him on my own.
     
    It is going to be hard for me if I have to make that decision but know it is one made every day by someone who can no longer care for their loved one at home. I am sure my children will help me with it and help me afterwards as I would have to clean the house out to move as I am sure financially that is what I would have to do.
     
    Tomorrow is another day and I am sure will have it’s own blessings and sorrows. Think of me as I talk things over with the social worker and try and think logically of what lies ahead. It is hard when you become the one who makes the decisions that affect the life of someone you love so much.
  11. swilkinson
    I was half way through chat and had a visitor come so I excused myself and left Hostsarah in charge…good for you Sarah! My visitor was an old friend who desperately wanted to help me out during this current crisis so she had made us a casserole (beef stew) and a fruit loaf to cut if visitors drop in over the long weekend.
     
    It is such an old-fashioned thing to do that it reminded me of my Mum’s generation who arrived at births, deaths and sudden illnesses armed with a casserole and a beef tea and a bevy of home made remedies. As they left the house they carted off the smaller children and the laundry and anything else they could carry. It was the way a community reacted to a crisis, feed and nourish those going through it and restore life’s balance again.
     
    When did we stop being a community and start being people who lived in houses, flats and apartments and never bothered to get to know their neighbours? When did the underlying neighborliness that people felt as responsible citizens break down into food stamps and welfare and a feeling of hopelessness and helplessness? Shouldn’t our communities rally round someone who needs help? When did that stop?
     
    I was taught by my mother to look out for the neighbours, those little old widows that lived alone needed fresh fruit and vegetables from our garden, a hand cleaning their windows, someone to pick up their parcels from the post office. They needed an afghan rug for their knees, some warm woolen socks, a man to mow, or clip the hedge or fix a leaky tap. They needed community support. It might take a village to raise a child; it also takes the same village to look after the old.
     
    Ray isn’t old and helpless but he does need a lot of help. Mainly I do this all by myself with a little help from Trevor and the community services people when I hit a crisis like now. We live in a society where people pay taxes and then when they need help they get it in the form of homecare, so our shower nurses and respite people are paid for out of government coffers with a small co-pay from the care recipient. So I just need to qualify for the help I need. This is done by assessment but anyone coming now can see I need help as Ray’s mobility is severely compromised. I am hoping that will improve and then I will let the extra help go and go back to my former package.
     
    Maintaining people like Ray in their own home rather than a nursing home is cost-effective. I am here all the hours the carers aren’t, so if I get a carer for an hour there are 23 hours when I look after him by myself. It is not hard when you break it down. It is mealtimes, tv time, exercise time, nap time etc. The shower is once a day and the rest of the time I care for him alone.
     
    I was laughing with our male careworker this morning. He asked me how I coped. I said that I can do a lot of things he can’t do. “Like what?” he asked. I told him that when I get Ray up off the toilet I say: “Hug your wife tight.” So he puts his arm around my neck and by feel I pull up his underwear and his trousers. Then he takes his arm away and I make sure he has his stick and help him walk forward. I said: “If you did that you would probably be up on charges.” And he laughed.
     
    Getting the care I need is proving harder than we thought as I need two workers for the shower time as Ray is temporarily two person assist. This means two people are here for the first half an hour then one goes off to another client and one stays here. I am not sure how long this is going to be for but I guess someone will judge when he is walking okay and balancing alone and then we will go back to one person again.
     
    All this would have been avoided if Ray had been hospitalized when he had the fall. Then the services would have been funded as “aftercare” with a lot more people involved and I would not have had to do all the organizing. There is a kind of irony about all of this. The squeaky wheel gets the most oil so because I am fairly self-sufficient we are not seen as people in a crisis so I don’t get the help I need. And because I don’t get the help I need I am more likely to break down and have to put Ray into care (SNF) which in the long run is less cost-effective. Make you wonder if there is any thought that a little help now will save a lot of money in the future?
     
    And so back to the story of my visitor: she discussed the issues with her doctor son this morning expressing that she wanted to help more. He said: “You are too old to help Mum”. Which of course is not true. A casserole is a great help. Tonight I can do some other job instead of cooking an evening meal. My friend Gwen has taken that load off my shoulders by providing us with dinner. God bless her and all those like her.
     
    So I am hoping hat the weakness Ray is experiencing is a side effect of the small stroke on the 30th May and not something else. I am hoping if I keep getting him up by myself that it will retrain his brain and he will once again get up by himself. If the weakness is either the stroke or from the shock of the falls then it should gradually disappear. If none of this happens I am going to have to look at the future and work out if I can cope for the next while and if not what I will need to put into place to do so.
     
    I have managed to look after Ray for over twelve years, a few more will be possible if I can get some help. There is no real reason that he cannot remain in the house he built and sit on the verandah for many sunny days yet. As long as I stay strong and organize things so I don’t break down or burn out.
  12. swilkinson
    I am such a whiner sometimes. Some small thing gets me down and away I go, feeling sorry for myself, feeling as if I didn’t deserve this, feeling life is hopeless. And yet I am so blessed. I live in a house that belongs to us, I have an income of sorts and I have the ability to make decisions as to how I spend my time and money. What I don’t have is the ability to go back and fulfill those hopes and dreams and I once had for our future. That is what I am using still as my basis for happiness? Silly me!
     
    Today did not start out as a good day. Ray and I had an unpleasant argument and he declared me “stupid” so I left him to complete his shower by himself and get dressed and made myself stay away until he was done. He wasn’t at risk but he was alone and had to do far more than he usually does so it took twice the time.
     
    I don’t like being “badmouthed”. I resent that the nurses are praised and I am not. But I do know this is down to his ongoing conditions including the dementia and unlikely to change. It is sad that this is so and I want it to be different but wishing won’t make it so.
     
    This acceptance journey is such a painful experience; it brings me to my knees from time to time. I am just a woman, not Superwoman, not Wonder Woman, just a woman. I have one pair of hands, one pair of feet, one heart, easily broken. I know a lot about a lot of things but I don’t know how to keep my heart from breaking when my life partner, because he is tired and out-of-sorts, turns on me. Then I feel alone and defenseless and wish things could be as they once were again.
     
    This morning when Ray went off on the Daycare bus it was such a relief. I knew he wouldn’t come home in the bad mood as he doesn’t retain information and emotion for long now. I can hold a grudge or be unforgiving and he has long since forgotten that he ever did anything wrong or said anything unkind. So he wonders why I am not speaking to him or being my usual self or treating him the way he expects to be treated.
     
    So I went about my business. Firstly chat where we had some new people in our room. Listening to them I could see how much harder life was for them than it is now for me. I have been over most of the learning experiences, I have a settled routine and I get some outside help. Sure most of our friends have left us but we still have well-wishers here and in the wider community and in some ways both stroke and dementia have brought me into contact with nice people I might otherwise not have known.
     
    I need to spend more time appreciating what I have and not mourning what I have lost. I need to see the good in what has happened to me and to Ray. No, I am not becoming a Pollyanna, I do know it is a tough situation I find myself in but other people are in a similar situation and many in one that is much worse. So I should give myself a shake and get on with life. And I will try to do so every time I stop being level headed.
     
    This afternoon I came home early from shopping, well didn’t really shop at all, had some leftovers for lunch and went down to the closest beach. It has a steep set of steps so I often avoid it in favour of one a bit further away. I took a book and a towel to sit on and I spent over an hour there. I played with a friendly dog and enjoyed just being out in the open air in a pleasant place with no-one to please but myself. That is free time. No-one to ask me to do anything.
     
    I love the beach, which is why we continue to live in a beach suburb. I am not a strong swimmer, don’t surf, rarely go to the beach but I can hear it on a windy day and smell it in the air and drive by it and look at it whenever I want to. That is another one of my many blessings that I forget to count some down days.
     
    So I have to forgive and forget. No sense in holding onto a hurt feeling, remember a word spoken in haste, not forgiving Ray for what he really can’t help. I can’t cling to the past and although I will always regret those things we never did I have to move forward again. There is no place in my life for wants and dreams, a caregiver has a load of reality to cope with every day and that is what I have to do.
     
    Ray came back from Daycare, was tired and went off to bed as usual. Ho hum!
  13. swilkinson
    I am just sitting here wondering what we will do if Ray keeps putting on weight? I just sorted out his wardrobe and he can wear about a quarter of last winter’s clothes. Unfortunately men do not wear elastic waisted or loose fitting garments like women do so the change is really noticeable now. It is a pity as he has some really nice clothes he can’t wear now.
     
    Like most semi hemis (someone who is partially paralyzed down one side) Ray has trouble getting dressed and needs his garments probably a size bigger than he would otherwise wear so they will go across his shoulders. Some of his larger clothes were bought before the major strokes and so they weren’t bought to be put on one handedly so I have to help him get dressed again. It is not good for him and is taking me away from preparing breakfast so we seem to run a bit later every day. For an “on time” person like me this is a major annoyance.
     
    Ray was always fairly slim and for many years stable in weight. As part of his Fisheries job he did a lot of walking, along river banks, up and down mountains streams, along the seashore. As part of his later carpentry job he worked a distance from his workshop and walked back and forth collecting materials and tools. He was up and down ladders, staircases, up on the roof etc and carried heavy loads so the weight stayed off.
     
    In the first few years after his major strokes he was busy exercising and did walk a lot with his stick, I rarely pushed him in the wheelchair back then. But after the broken pelvic in 2007 he found walking difficult and walked less and less. Now he hardly walks at all and his appetite seems to have increased again – so the weight gain happened.
     
    On Sunday we are going to an old friend’s wedding. He is marrying a lady deacon at one of the neighboring parishes so they are getting married as part of the normal Sunday service and there will be a large morning tea as a wedding breakfast afterwards. At least Ray will get away with not wearing a suit and I will not have to wear a hat. Saves me looking ridiculous, as I am not a hat person.
     
    The reason I started looking at Ray’s clothes was because I am trying to get the house under control again. The diabetic blister situation with all the doctors’ appointments, visits to the podiatrists etc took so much time I didn't make the most of summer. So now I have to use the short dark days to do the clearing up and throwing out I usually do in summer. Sometimes I wish I could toss the contents of the house on the lawn and only bring back inside what I really want. This would leave us with nowhere to sit and no storage space so I suppose I can't do that. But I would like to.
     
    Since the strokes in 1999 we haven’t done a lot to the house though we did get the roof fixed, put on the new carport and get the built-in wardrobe in our bedroom. Last year I also got some painting done and that will continue again soon, our handyman is without work again so he came back around looking for some odd jobs. I am not happy with the way he left last time but tradesmen are as rare as hen’s teeth so I need to consider what I want done next.
     
    I sent out another email asking for people to contact us with their news as even that source of communication seems to be drying up. I realise sometimes that unless I do the reaching out to people it is easy for them to forget us, after all we are no longer moving in the same circles and they don’t see us as part of their busy everyday lives. I understand that but still need to have some friends. I want friends both now and in the period “afterwards” (like after Ray goes into care if that happens) and I am alone again.
     
    You really don’t know what you will do in the future anyway do you? I suppose the future is like another hypothetical where we say well if this happens then maybe that happens? There is no evidence, no timeline, no training courses to handle an unknown future. We just go on with the present we have and hope the future takes care of itself.
  14. swilkinson
    I have just been to a one day seminar called “How do we cope?” and I can tell you that the service providers and helping hand professionals have not a clue what we go through! It became obvious when we did a hypothetical this afternoon that giving us a few hours respite care a week is as far as they are prepared to go. It is as if they are blinkered and do not see the need people are in OR see a gaping hole and know they will never fix it.
     
    I try to manage with the level of care I have and never complain but I know I am going to complain because I do need more time off than I get and so I get too tired. Then because I am only human it all comes tumbling out – in a big ugly vent. The person who mostly cops this is Ray as I express that I don’t want my life to go on like this etc etc. Sometimes Trev turns up at the wrong time and I tell him or I simply come on here or go onto Facebook chat and tell the next person I talk to all about my problems. It is one of those “better out than in” events but it is tiring in itself.
     
    One man at the seminar was so angry I thought he was going to have a heart attack as he shouted: “Don’t tell me what is available tell me what you can actually do for me!” It reminded me of all those political promises we get every few years, help for carers, better access to health care, better assessment services…oh yeah? And how is that all going to be funded pray tell? The angry caregiver looks after his wife who had MS and has been doing so for 22 years. Wow, that is a lot of caregiving hours.
     
    We finally had a BBQ last night for Mother’s Day. It was late starting and it was really cold out by the time the boys has finished BBQing. The four children, Tori, Lucas and the two little boys flashed in and out of the lighted areas with various adults calling out: “come back to where we can see you!” No harm came to any of them though they might have been a little hard to wake up for school and daycare this morning.
     
    My daughter’s parcel arrived this afternoon, just a few little bits and pieces chosen with love. I like the framed cross-stitched picture that reads: “Housework is the crabgrass in the lawn of life”. She gave me a bag that announced it was a sewing bag, which I will use to take my knitting to craft group on Tuesdays and a pen and pencil set plus two nice cards, one from the grand children and one from her and Craig. It is good to get presents, harder to buy for an older person like me without access to a lot of things. Trev bought me a new electric kettle and a bag of potting mix, Steve complained that he didn’t know what to buy me…sigh.
     
    Ray and I seem to be getting on okay but I notice now that his long term memory is going. It was my fault this morning that the sun shines in the window in winter when he is having his breakfast and “blinds” him. It was my fault as I was the one who bought the house. Well no, we bought a small portion of it 41 years ago and have built onto it three times and the winter sun has always come in at that angle. I finished up moving the table slightly but also thinking what a pity it is that he can no longer remember all the memories attached to our three lots of renovations and all we have been through together here. It is quite obvious now that he really has little idea of our joint past.
     
    I saw a few people at the seminar I have been on other courses or days out with, one has promised not to lose touch with me this time but we all say that don’t we? It is sad sometimes to see faces more lined than the three years since you have seen them would explain. It is not easy being a carer for older parents, spouses, children or that odd unrelated person that somehow comes into the care of a benevolent friend. I don’t know what the answer is except: CARE< LOTS OF CARE< A LOT MORE CARE etc. And it would help to have the appropriate level of easily accessible respite too.
     
    If the best things in life are free why is everything I do so costly?
  15. swilkinson
    We’ve not long got back from our Lions dinner, it is nice to go out and socialise, Ray was pretty good today but tired from yesterday so a little confused. I had a major embarrassment when someone came to the door just as I was calling out to him. It must have sounded like a domestic disagreement as I was yelling: “For heaven sake just listen to me!” It was just his usual game of ignoring me.
     
    I am feeling the need for some alone time again. Once more I am filling my “free time” with shopping and other things to do with Ray. Apart from going to the movies with Tori when she was over here I have done nothing further for myself. My next door neighbor owes me a massage for Christmas, he pays for me to go to his masseuse, and I somehow haven’t had even the couple of hours needed to do that.
     
    We've had a good few days despite the rain. We can go along without too much fuss a lot of the time. Of course we have good and bad days but then so do all of those people in the "non-stroke" world that we know. Ray and I are two human beings who happen to be married to each other. We do love each other but we don't necessarily agree all the time.
     
    I don't think I have got more tolerant over the years, I think dealing with the strokes and the dementia have force me to change my way of thinking. I simply can't afford to be a "me first" kind of person when it is so obvious that Ray's immediate needs have to come first. Having his needs met does not however include his wants. Like Debbie said in her blog I sometimes say: “After I have finished this…”
     
    I was worried about the dinner tonight but Ray managed okay. He has once again started having coughing fits which starts off with a tickle in his throat and finishes us with him red-faced and gasping for breath. I don’t know what is causing it as the only change has been the higher dose of cholesterol fighting medication. I will ask our pharmacist if coughing and dry retching could be a side affect of that. I hope not as he needs to take it as he has a much raised cholesterol figure on his last bloodwork report.
     
    We had Lucas after school today as Edie has had bad stomach cramps and went off to have an ultrasound this afternoon. It eliminated appendicitis and it is probably not gall bladder problems, so tomorrow she has to have a pelvic scan. I hope it is nothing serious as they do hope to have children once they get married. She was at the local hospital yesterday evening but the scanning machines were all in use and in the end the pains calmed a bit and they sent her home.
     
    I found myself nodding during the secretary’s report tonight. Lucas and I played on the Wii for two hours this afternoon while Ray had a nap. I must say playing, golf, bowling, tennis etc against a very competitive 8 year old tires me out. I play against him most Sunday afternoons now to give Trev and Edie some time to talk without little ears listening in. It is difficult to hear yourself think sometimes as he is a chatterbox but I love the lively company.
     
    At the dinner tonight we were part of a lively table including our two youngest members aged 50 and 55. They were both in a mad mood and produced some hilarity. It is so good to have a laugh in company with friends and feel that happy buzz that laughter brings. My neighbour on the other side at dinner was a retired minister and he has a collection of funny anecdotes he has accumulated through his ministry and he filled in the gaps with some of his stories. They were even funnier because they were true.
     
    When we got home there was a message on the phone from Naomi, our granddaughter whose birthday it was today. We sent her a parcel and she kept it to open tonight, she enjoys a whole heap of little things and I usually buy some clothes too. She is a sweet child and we are looking forward to spending some time with her and Christopher at the end of the month. She was just saying thank you for my present to her Granma and Pa.
     
    When I write a blog like this I am reminded of the poem from “Alice in Wonderland” that starts: “The time has come the walrus said, to talk of many things….”
  16. swilkinson
    It’s raining again. Ray and I were going out for a picnic by the lake, but it’s raining again. So we sit, we relax, we reflect and contemplate life. It is colder with the cloud cover, yesterday was warm and it was hard to believe summer is over, today it is cold and it is easy to believe winter is coming.
     
    It is what Easter is about down our end of the world. It is not Spring, so not that sudden burst into bloom of all the spring flowers, not the gradual rise of temperature and the return of the sun. All the usual trappings of Easter, bunnies, chickens, eggs, fresh flowers all seem so wrong for a southern hemisphere Easter. It is not easy to think of new life when the trees are losing their leaves, when the roses are looking like sticks with a few late blooms on them. It is obvious this is not the new beginning but the beginning of the end. More like slowly dying than joyfully rising.
     
    So we have to think in a different way. Easter is about enduring. It is about living the life despite what is happening around you. Jesus rode into Jerusalem on the donkey knowing he was riding to his death – that is the Palm Sunday lesson. Doing what you have to do regardless of the consequences, doing what is right for you. It is about living a life that is consistent with your beliefs.
     
    Yesterday we had just a few kids up the back of the church in my little coloring corner. I made them butterflies out of pipe cleaners and had some pre-made butterflies on sticks to give them. We had a cartoon called “Fred the donkey” as a children’s story, a part of a series of Bible stories for kids made in New Zealand. While the sermon was on they were up the back with me. It is good to see the stranger and the regular attendees passing the pencils and getting on well together. Children’s church is a mini community of faith.
     
    We have had a quiet Easter as our families visited last week. These days we have very few visitors. I have 100 friends on Facebook but few face-to-face friends now. That is sad in a way, as we don’t get to laugh together. I really miss having a good laugh. I do have a couple of people who I talk on the phone to who I can laugh with but not that hilarious, hiccupping, tears-in-your eyes kind of laughter now. We live a much more sober life than we did prior to the strokes.
     
    My next door neighbour gives me a massage voucher for Christmas. I didn’t use last year’s as it didn’t fit into my life somehow. He reminded me that he still owed me one. He is away a lot as he is a geo-statistician involved with coal mining. He says he will be home for a while but then something goes wrong and he is off to Indonesia or China or somewhere. It is a strange kind of life. He lives here as he loves to surf, is involved with the local Lifesavers and has a teenaged daughter close by. I like having a long-term neighbour but wish he was home more. We talk balcony to balcony.
     
    The parrots are busy with the last of the autumn blossom, at night the bats are noisy as they attack the last of the umbrella tree fruit, the date palm fruit, the native fig tree fruit and anything else sweet and tasty. These are big bats and they fight over the access to the trees all through the night. Makes for a noisy neighbourhood for the time the fruits last.
     
    And so we contemplate the winter to come, knowing that it will be more difficult to get out, colder in the bathroom of a morning, harder for Ray to get out of bed and to get around as his muscles tend to be stiffer and getting up out of a chair more difficult. We don’t heat the house to more than warm as it is open plan and hard to heat so we warm up the space we are in and accept that the power bill will be much higher, everything you do in winter costs more money.
     
    I have enjoyed what we had this summer, warmer days, and not too many humid and uncomfortable nights. We didn’t do a lot because the diabetic blister made staying at home easier than going out particularly for the 8 weeks I had to wheelchair him everywhere. At least he was able to walk into church on Easter Sunday and can sit by himself on the pew without having to sit in the wheelchair and me worrying that he is in the way.
     
    The good news is no specialists’ appointments in May. The vascular surgeon said he cannot do anything about Ray’s blockages in his feet so to keep an eye on the condition and he will only operate in an emergency. Today we noticed a rub mark on his left big toe and I applied a Meplex strip to cushion it in the hope that it will stop a blister from forming. The kidney specialist is also on a six monthly visit as is the neurologist. Our GP will see us once a month unless something goes wrong.
     
    I will cope in winter, I know I will. I will just take it a day at a time as I have all the summer. Some days will be good, some days not so good, 24 hours at a time.
  17. swilkinson
    On the Carer’s Strategies for Coping list number 7 is: Patience and tolerance – think twice before reacting. It is such good advice but so often it is the opposite of what I do. Under stress I rush around, hurry, hurry, hurry I say to Ray. I get into an anxious situation and over-react, I lose my keys, my purse or my handbag and I panic. In short I am just an ordinary caregiver doing extra-ordinary things (as we all do). I do it not because I am special but because that is what is required.

    Ray survived the four days of our grand daughter Tori’s visit fairly well, I think because she is less intrusive than the other grandchildren. She is very considerate for a nine year old and if I signal her to go or to be quiet or send her to fetch something she obeys immediately. Which is why we can have her here for four days on her own.

    She had something special to do every day. I collect bits and pieces so she has fun stuff to do. On Sunday morning she came to church with us as she normally goes to Sunday school when she is here. In the afternoon after lunch she painted some little plaster animals. I bought them cheap and already had the paints from another project. She enjoyed it but when we went shopping and saw a similar kit with only two ready-to-paint plaster items for $11 she realised how lucky she was to have had four to paint. I think I paid 50 cents each for them at a garage sale.

    We had a pretty good day yesterday. It was the short Daycare day so I was hoping to take her to the movies and timed it just right so we were able to see "Hop". It was expensive as we had lunch afterwards but this is her school holiday treat so I was not worried about the cost as long as she enjoyed it, which she did.

    It was another busy day today. It was Tori's last day with us so I packed a picnic and we went to a local park. Tori loves a "fancy feast" so we had savory biscuits and cheese, then a meat and salad roll, then a muffin with our drink and lastly chips. She was very impressed. She climbed all the equipment and played in the open area with some other children. The park is called a Liberty Park as all the equipment is set up to be handicapped accessible. I think because of the intriguingly different equipment the able bodied kids love it too.

    Ray has some sneaky ways. People with dementia it is said replace lost intelligence with cunning and I am sure that is true of Ray as he waits till he thinks I am occupied elsewhere and sneaks food. Sugary foods and diabetes do not go together but as Ray's diabetes is often way out of whack, the sneaking food compensates for the fact that I monitor what he eats.

    When we came home from our picnic he went to the fridge and got a large handful of grapes, he dropped most of them as he couldn't eat them fast enough to prevent me from seeing them. After the episode with the diabetic blister he still can't resist sugar rich foods. I get mad about it but what can you do?

    Tonight we went to the Lions dinner so I had to wake him from his nap and of course because of the extra sugar he was argumentative and awkward and so slow so I got flustered and we went off very unhappy with each other. That is when the patience and tolerance needs to be exercised – by both of us. It takes one to start an argument but two to continue it.

    I stay with Ray because of the good times we have shared, the children we have raised and the memories we have of better times. We have been married 42 years and neither of us can wipe that out. We used to be a good team, raising our kids, keeping the inside and outside of the house immaculate. Now I struggle to do that all myself. I know I am losing the fight but battle on valiantly. So I do try to think twice before adversely reacting and keep the peace.
  18. swilkinson
    We are missing our son Trevor who is holidaying up in Queensland with his little family but just had our daughter Shirley, her husband and two kids here for a day and a half. They decided on impulse that they could squeeze in a visit if they just moved a few meetings etc and up they came. They hit a lot of traffic but said it was all worth it to spend some time with us. I am talked out and Ray is tired out. It was so lovely to have them come for a visit, however short.
     
    Shirley and family are not hard to have stay as they work their activities around ours. Yesterday I had chat and so they went for a walk while I was doing that. Then we had lunch and some walking, Craig pushed Ray in the wheelchair, home for naps and then of out to dinner. It was lovely buffet food and I think I ate my weight in seafood.
     
    This morning we had the shower nurse come so the children went for a walk with Craig and Shirley and I went to see Mum. My Mum is permanently in a wheelchair and I think Shirley was shocked in a way to see how much she had deteriorated since she saw her last September. She was awake and asleep as she usually is. Mum has a tray with a "fiddle rug", a tray cloth that has different textured attachments like a thick string with three wooden beads, several different knotted wool ties, large buttons, a twisted wool worm. Shirley got one of the wool ties between Mum’s fingers and she pulled on that.
     
    When morning tea came (a concentrated vitamin rich milk supplement) she helped Mum to drink it. As I do, I think she felt as if she had done something good by being there. Particularly as` one of the aides said: “She does have some other relatives then.” As I am usually the only one to visit it did make a change. Ray comes when I have to go check on her and I have no-one else to mind him, but he is uncomfortable there.
     
    We have made plans to go to Shirley’s at the end of next month. This time she wants us to take our car so we have worked out a way of doing that with Trevor’s help. I don’t drive through the city of Sydney now, it is too busy, the traffic is too fast and there is nowhere to toilet Ray if he suddenly wants to go. With a co-driver I can get in the back seat and help him with the urinal.
     
    I have just realised that over Easter this year I will have six days without care as our provider is not doing care during that period and Daycare will not be operating on the Monday. I enjoy the free time even if I still go shopping or pick up Ray's medications. I also use it for visiting Mum and a couple of old friends in nursing homes too. It is "me time" if it is something I choose to do. I didn’t send Ray to Daycare yesterday as we had our daughter here but then we had the walk and a lot of lovely talk so I feel as if I did something out of the ordinary.
     
    Tomorrow I have Tori come for a visit for four days. This is a chance to have some Tori and Granma time. Without Lucas here she will also be able to do some quiet reading which she loves to do. We will also take her to the shopping centre to do a little buy up and I plan to take her to the movies next Monday.
     
    Ray can’t go to Scallywags tomorrow as they have a day out to one of the local Clubs planned. There is too much walking involved and Ray would need to be in the wheelchair and that is why he can’t go. He will probably sleep a lot tomorrow anyway, tired from the exciting family visit.
  19. swilkinson

    seasonal changes

    By swilkinson,

    We’ve had rain the last few days, not heavy rain just the misty-moisty kind. It means that the mornings are much colder and the wind tells us that winter is on it’s way. Summer is now over and I haven’t even been swimming in the sea this year. I hate the thought of winter, especially that feeling of being closed in by the cold and damp. Ray doesn’t have a lot of joy from winter either as the cold affects his stroke damaged side and stiffens his muscles making him slower and more tired. This is inclined to make him say “no” to any suggestions of going out for a while.
     
    What to do when the bad times come again? I thought of that as title for this blog but I feel as if that would tempt fate, as if somehow if I say some of the things I am thinking out loud they will happen. My Mum used to be like that; if a neighbour became sick she would think it was because she didn’t call in to see her on her way past last Thursday! It is as if we think we control the world around us that seemed possible pre-stroke, now it seems ridiculous.
     
    Ray and I just had some bad days, days when he was uncooperative and I was to blame for everything. When I showered him the shower was too hot or too cold, the food was too spicy or I had put too much on his plate. On those days he never says thank you, just gives a nod as I put something in front of him. That is when I feel like a servant and not a wife. We don't at the moment get those days often but a few too many in a row and I am back into the “I AM OUT OF HERE!!” mode. Remember how you used to do that as a young married, slam the door and walk off in a huff? Well I can’t do that now to get rid of a head of steam, Ray is 24 hour care and I am his caregiver.
     
    Fortunately the last two days have been better. My problem is he gets a bit better for a while and I think he will always be that way and then suddenly he changes again and I am devastated. I have to re-learn to go with the flow and to remember not to take it all personally, it is not all about me.
     
    I like to think I am open and honest but do I try to hide Ray's dementia from the rest of society in the hope that we will still be acceptable and not get isolated. It is bad enough that he is in a wheelchair, a kind of half-man. Now with the dementia, he also has problems with thought processes, he is slow to speak and rarely answers questions. Even at Lions we are often isolated on the end of one of the tables. I don't think they mean to be rude, they just want a pleasant evening out talking to friends.
     
    Ray still appears normal to some of our friends. He is quiet, has a warm smile and always says something to indicate he is pleased to see them. He is well liked at Daycare, and doesn’t seem to mind the extra day. Of course he comes home and sleeps the rest of the afternoon away. That is because of the massive fatigue that has dogged him since the major strokes. He just gets very tired and I know that so I usually work around it.
     
    Yesterday after doing the Tuesday night chat (10am Wednesday my time) I took myself for a good long walk down the main street of a small coastal town about twenty minutes from here. Light rain didn't deter me and I did feel better for having made the effort. Going for a walk along the seafront is something I have loved to do for many years so it felt good and "normal". I like to walk but rarely seem to fit a walk into my free time; mainly it is walking around shopping centres or into medical centres.
     
    Today we went and saw the kidney specialist. Mostly good news but Ray has put on 10 kilos (22 pounds!) since the visit in October. The specialist explained that this is not good with the conditions he has right now. He insisted on raising the dose of the cholesterol tablet so I am hoping this does not bring the incontinence back. If it does we will drop it down again. Incontinence is too much for a caregiver to handle constantly and even specialists need to weigh that up against lowering cholesterol.
     
    We have to go and see our GP tomorrow so will discuss the cholesterol issue with him. We’ve had so many visits to the podiatrist, the vascular specialist, the GP and have now caught up with our regular appointments with the kidney specialist and the neurologist. With all the tests Ray has had it is all so time (and money) consuming and doesn’t leave time for the other things I want to do in life. I would like to fit a bit of living in.
     
    We did cancel the trip to our daughter’s this weekend but hopefully unless we get more appointments scheduled into next month we might visit her at the end of this month. I miss my grandkids, I like to have those long evenings to talk to Shirley and Craig too. Talking on the phone is okay but somehow it is all about this week and not about life.
  20. swilkinson

    learning from life

    By swilkinson,

    Long, long ago, back 41 years ago in fact I was pregnant with our first child. Somehow I picked up food poisoning and for twenty four hours or so rarely left the bathroom. I laid on the floor, went into the shower stall or alternately put my head over the basin. I was really, really sick. My husband Ray rarely left my side, as I was sick he went off and got clean clothes for me and I washed myself off. In the end I felt better and got out of there.
     
    Sometimes when I have been cleaning up Ray over the last few years I have thought of that time. He didn’t complain about helping keep me clean, so why am I complaining? My guess is that it is the “always” factor – I feel as if I am always doing it, showering him, washing his clothes and changing the bed. But it in not true, each incident is separate and each time I need to remember that long ago, he did it for me.
     
    It is the constant nature of caregiving that gets to me and probably to most long term caregivers. There is no let-up. The person you look after does not wake get up one morning and is well for a day, strong, competent, and cognitively sound. You wish they would, you dream they could, but it doesn’t happen. Just like a survivor dreams they can walk and run and not fall over, the caregiver dreams life is back to normal and cries. Or I do anyway, not often but sometimes, after one of those vivid dreams, that life has suddenly returned to normal and Ray is restored to full health again.
     
    Ray has been only occasionally incontinent of late, always wet but not soiled now. The changeover from metformin to insulin did that, just as the kidney specialist said it would. Giving him insulin twice a day, checking his blood sugar etc is a nuisance but it is better than constantly doing laundry. I wish the urologist had been as successful with the fluid problems but he wasn’t. Some things you just have to accept.
     
    We went to the orthoptist and got the new AFO (brace) today. The disadvantage of the new one is that I will have to put it on as it has an ankle strap as well as the one at the knee. This is to make doubly sure there is no movement and no friction so another diabetic blister does not happen. This means a change of routine for me and for the carers as he cannot put it on tightly enough so we will have to do it. I will probably complain about that from time to time as it is another “must do” and I have a lot of them.
     
    I get tired of doing all the things I have to do and I get upset when someone pulls me up on something they think I should have done. The orthoptist doesn’t like Ray’s current shoes and asked if I thought them satisfactory. He would like me to buy a much more expensive brand and have them professionally fitted which can be quite expensive. I will probably have to do that. The same problem over and over, Sue must do this, Sue must do that. If Ray gets another blister it will be Sue’s fault. I guess that is right.
     
    Mum was funny yesterday. I was with her for an hour and a half. For once when I put my hand in hers she gripped onto it and when I spoke she turned her head to face me. The therapist was doing hand massages. She turned up some more lively music and we started to talk. Mum would turn her head to Michelle when she spoke and back to me when I spoke as if she was following the conversation, she occasionally made some noises herself as if she was joining in. All the time she held on tight to my hand. It was the first time for ages I felt as if she was an active participant in what was going on. It is not often I leave the nursing home feeling better than when I went in but I did yesterday.
     
    I have to “take the swings with the roundabouts” as my Dad used to say. I think that means you get to have what you like and want sometimes and other times you just have to have what is available. I understand that. Caregiving is a bit like being at school, you might not like what you have to do but you have to do it anyway, day by day, and in the end you find it was giving you an education.
  21. swilkinson

    late to Breakaway

    By swilkinson,

    Well, please accept my apologies Tuesday night chatters as I missed chat as I did go to Camp Breakaway with Ray. I wasn’t notified that we were accepted into the Camp so I just went on with Tuesday as usual and they were all frantically trying to find us it seems. Even going so far as to ring the local hospital “just in case”….lol. I had some forms early in the New Year so knew the camp was on but when I wasn’t notified we were on their list I just decided they must have filled it without us.
     
    When the organizer caught up with me it was 4.30pm and I did a hasty pack and up we went. It meant we missed the afternoon entertainment but were there in time for dinner. It was sad to learn some of our former friends were now in care but hilarious to find out a 92 year old former roommate of Ray’s was now married! He married his 94 year old girlfriend and they share rooms in a retirement village now. Proves there is hope for all of us!
     
    We had two lovely blue sky days and I found a sheltered corner after lunch two days in a row and read a book. Only the Readers Digest condensed kind but it was nice and quiet and restful and peaceful and someone else was keeping an ear open for Ray to buzz for help. Mind you the second day I was the one who stopped him from sliding on the floor, he was trying to get up by himself and got stuck across the bed and said he couldn’t reach the call button! He was so lucky I came back when I did.
     
    I like the way one of the carers greets Ray with a slap on the back, a joke, a story or two and his undivided attention. Ray loves the way Chris calls him “my mate” and treats him like a friend for the whole three days, as if they are buddies off somewhere together. Ray smiles and laps it up. This could be the same with male friends and the boys if only they could put in the same effort Chris does to make Ray feel welcome and wanted as a person. Bless him for what he does.
     
    Being away from home puts a lot of things in perspective. From this Friday night till Sunday afternoon the Camp Breakaway staff are hosting a Camp for Families - parents and siblings and terminally ill children. It is a huge job with twelve families, 13 babies and infants and as many siblings, three separate settings, three teams of workers all combining to take the pressure off suffering families. I felt so blessed that my own kids are so normal. That they grew up and had families of their own and gave us the blessing of grandchildren.
     
    The staffers are so good, we have been so many times now that we know almost all of them and so it is like visiting a distant part of the family, catching up with news, sitting sometimes with a couple of the staff at the table for meals, sharing part of their stories as they also share ours. I can’t overestimate what that does for me as a person and a caregiver. I get so much emotional support from them.
     
    So here I am home again. I did the Thursday night West Coast chat and it went well with six participants all together. We talked as usual over a range of subjects. As we go we will build a family feeling there too. As we have on Tuesday nights. A friendship is build like a wall, one brick at a time so as we come back again and again we add to our knowledge of each other till we know the names of the chief people in the lives of others and can ask sensible and sensitive questions of each other without fear of being off target.
     
    My son told me he prefers real friends to cyber friends. I think cyber friends are real, bound together by mutual need and mutual trust and respect. I think cyber friendships, like the old pen pal system, are a good way of drawing like-minded people together. I am not able to visit a friend locally at 11.30pm but I can chat to one of my Strokenet friends on Facebook at that time. They might be starting the day as I am just finishing mine but what does that matter?
     
    I have my grand daughter Tori here tonight and we will take her and Lucas with us to the Church fete tomorrow. They are both good at spending my money so I can be very generous with their help. They get on pretty well together and both know a few people at church as they sometimes come to Sunday school. Tori is growing so fast now, amazing how mature she looks at almost ten! I guess society is that way now. Children don’t remain children for long; they grow up way too soon. So I will enjoy her visit while she still wants to come here.
     
    Hey ho, hey ho it’s into life we go.
  22. swilkinson
    Some days have a few extra challenges. Today when I checked my emails I had a note from my ISP telling me the direct debit they do each month had been unsuccessful, so problems with my bank account. Then just as I logged into chat the banner across the top told me my Java was now out-of-date, and would I like to run it just this time? Yes please as I was already late. And then a neighbour popped into the house to ask me if I knew my power line was almost down on my driveway? Help!
     
    So I was late into chat, I had to ring the power company’s “Major Emergencies and Hazards Line” with my problem to solve because I had Ray away at Daycare and the bus would back up my driveway, catch onto the wire and I would have been responsible for barbecuing a busload of oldies. Please, where is the sense of humour in all of this? The whole world seems to be laughing at me some days.
     
    Sorry chat group if I seemed a bit distracted this morning, I was worried that 1) my Internet would be cut off or 2) my power would be cut off. That is why I scooted away while you were all still chatting away there. I don’t usually run out on people like that. My apologies to the new people who had only just come in, next week will be different, I promise.
     
    Thankfully the nice lady teller I spoke to at the bank cleared up one mystery, my virus protection provider had taken our their fee a month before they were due to…so insufficient money to pay my ISP…easy fix, just add money. Then I emailed my ISP to resubmit the account. Phew!
     
    I had agreed to go to a Carer’s meeting at the facility Mum is in now. I had never been able to go to it before as it is on the third Wednesday of the month. So I went to that this afternoon. Of the nine people there four of them I already knew. The coordinator is the chaplain that came to comfort me when Mum did her “dying swan” act so she and I are well acquainted. I was asked to tell my story and told it as briefly as possible. Stunned silence. I guess the way I tell it from looking after three people to looking after two and now looking after Ray and supervising Mum’s care is a bit of a “tall tale but true”.
     
    I told my online chat group I was going to a “live” chat group and John (john88) rightly asked me if they are not “live”? I guess I meant face-to-face not “live” as of course you are all “live” just as I am sitting here typing this out now. Very alive indeed and as mad as a hatter some days….lol. But I guess all is well that ends well. When I got home the power line was back where it should have been and my next-door neighbour said he saw a truck with a ladder and a man doing something up the power pole so it was fixed not long after I left this afternoon. Whew!
     
    If the rest of the week goes smoothly I will be grateful.
     
    Yesterday Ray and I went to the podiatrist and she gave Ray the all clear, the foot is officially healed. He has to go to the vascular surgeon tomorrow so we should have an opinion of whether or not he needs the veins and arteries in the left leg further scrutinized. The circulation is not good due to the diabetes. I am praying that if there is something that can be done to make his circulation better it will be done.
     
    After we had seen the podiatrist we went across the corridor to see the orthoptist. The orthoptist did the plaster cast to make the AFO (brace) and Ray no longer needs the heel padded just “double socked” so I will pad the left foot by putting on one short thick sock and the usual walk sock over the top and see how that goes. Ray knows he has had a lucky escape with the blister healing and still having both legs. So if you still have two legs that is something else to be thankful for. I am thankful for mine and for Ray’s.
     
    On a good note I had the visit from the English cousins on Monday and enjoyed it immensely. Marilyn is really nice and had been up to see Mum’s step-brother’s widow (Mum’s step-brother was her full cousin) and it was good to have news of how Jean is getting on. She was caregiver for her husband, Mum's step-brother John so you all know that after the loss it can be very hard to take on yet another “new normal” in widowhood but she appears to be handling things well.
     
    And so good people, this is Sue, live from her computer in her house on the lovely Central coast, east coast of Australia, signing off as usual with “bye for now”.
  23. swilkinson
    I am thankful that Ray’s heel is healed. I am thankful that now the heel has healed he will not lose his leg. The vascular surgeon may even come up with something to improve the situation. Ray only has 50% blood flow in his left ankle but the vascular surgeon has downgraded his condition to non-critical. We are still going to go ahead with the next set of tests and will then make a decision about whether to go further.
     
    It may mean a bypass operation where a vein is taken from the side and replanted in the left leg. With Ray’s other conditions this would be a risky business so if there is another less invasive surgery we could try that first. My English cousin said her brother-in-law is in hospital having just had a similar operation and could be as long as four months in recovery so it is not an operation to be taken lightly.
     
    I visited Mum today. I go to visit her mainly to see that she is clean, dressed in clean clothes, looks fed and well looked after. I know the staff takes her to the main lounges for various things despite the fact that she responds very little now. When I first visited Mum this morning she was doing the staring into space thing, then shutting her eyes, didn't turn her head towards me at all, makes me so sad. I like to share an activity with her if I can as sitting beside her bed seems to just allow her to feel comfortable and sleep more.
     
    I read a post on Strokenet about missing you husband, I sure do, it has been so long now since I thought of Ray as my husband and not just the invalid I look after. He used to be friend, lover, companion, handyman, provider, father, dancer, so many things. Those days are long gone. Now he cannot work, hardly walks, doesn't process thought. I guess I mostly look after him because we said those old fashioned vows: “till death us do part”. One day that will happen. And of course I love him still and he needs my help.
     
    I started taking some “me time” in my time away from Ray, I failed miserably in that this week as there were so many things to do for Ray. But next week I am determined to take some of the free time I have promised myself. It is hard for a caregiver to put themselves first and I have been doing this for so many years now it is as if this is my full-time job. I guess it is, what is lacking is the pay packet and the four weeks holiday and the rest of the benefits.
     
    We have not had much outside contact this week although we did go to Lions dinner and out to lunch with friends. I think I mean at a personal level. Few people make the effort to come to our front door now. We do speak to our family on the phone, that is a joy, to speak to the grandchildren and catch up on the doings of their week. But it is not the same as seeing them face-to-face and knowing they are well by their shiny eyes and flashing smiles.
     
    I really miss visiting the family but since Ray is no longer as mobile or as portable it is too hard for us to travel distances now. I did tell my daughter I would bring him down if his mobility improves but I don’t think that would be any time soon. I am even missing the flying to Cairns as traveling on the train to where they are now actually takes the same time as the flight. Yep, trains travel slower folks.
     
    I confess to feeling sad sometimes. I know a lot of people think I am Super Sue but I am not, just a middle aged wife looking after an older invalid husband and supervising an old frail mother in a nursing home. Not a lot to rejoice in on this part of the journey. My faith holds me up when the world tends to crush me down. I am blessed with some good friends but having less and less contact with them makes that harder too, not only because Ray is frail but because, being caring people, they have some family responsibilities too.
     
    As Tiny Tim said at the end of “A Christmas Carol”: “God bless us every one.”
  24. swilkinson

    the beach etc

    By swilkinson,

    I don’t usually go to the doctor’s by myself but I did on Monday. I don’t go often as there is nothing much wrong with me. This time I had an earache that despite my best effort with OTC meds and ignoring it did not go away. So I sought some antibiotics and a little TLC.
     
    When you have been a caregiver as long as I have, eleven years and counting, the doctor tends not to see you as a person. So I walked in and before I sat down he asked me how Ray was! I would have thought the whole point of going was to have someone concerned about me. But all he was worried about was how Ray’s caregiver was but he did give me antibiotics so I am just getting my hearing back at last.
     
    I went again to the beach after chat this afternoon, about 80 degrees, warm and sunny,with a gentle onshore breeze. It is a nice spot and I love going there. No-one else there today so it was my beach, just me and the sand, the wind and the waves. I could sit there for hours but as I had 80 minutes and that included the drive there and back about an hour was what I had. I probably have five weeks more of nice warm weather so need to make the most of it.
     
    I got home about the time Ray would have been home but the bus driver picks his grandkids up on Wednesdays so he dropped everyone but Ray, did a little loop and picked them up. It is good we are still “small town” enough for that to be possible. It was the Monday/Tuesday driver today as the Wednesday/Friday driver was off sick. I like it that the carers are up close and personal with the Daycare clients. Some, like Ray, have been going for a long time and it is part of their routine.
     
    The doctor asked me how long since Ray’s first stroke – I told him 21 years now. He looked at me and said: “That is a long time for you too.” So he does recognize the work I do as a caregiver. I have to get paperwork done by him each time Ray goes for his two weeks of respite and so he does know he goes there now. Of course when Ray goes in as the patient he concentrates on Ray’s needs.
     
    I think few people relate to the “long haul caregiver”. Mostly when we think of caregiving here we think of those who look after cancer patients and those who look after elderly parents, not so much the spouse caregivers. When I left Social Services in 1999 there were over 300,000 people in New South Wales who qualified for a Carer’s Pension, who looked after someone needing 24 hour supervision. Of course that does not figure in those who look after someone but work part-time or are self funded retirees. I don’t know what percentage of the population are caregivers but there are a lot of us out there.
     
    Sometimes I feel sad about how life has become for us. I know we do less and less in the community and spend more and more time in the home. I guess that is inevitable with Ray now having dementia as an addition to the stroke damage, the diabetes and other minor ills the doctor hands him so many pills for. He is less and less able to relate to others now so socializing can be a painful experience for him.
     
    My advice to others is go out when you can and while you can. It is great to have plans for good things to happen somewhere in the future but we do not know how much future we have. And good times do not have to be expensive, a picnic, a drive to a farmer’s market, a movie if the person you care for is capable of lasting the distance. There are regular activities that are pleasurable to do which don't have to cost a lot of money. I used to enjoy swimming at the heated pool, or bowling or just regular get-together with friends, I just have to look at all the possibilities.
     
    I love to eat out once a week, with or without Ray and to spent time on the beach by myself like today. If Ray had been with me I would have gone to a different beach where he can sit in the car but still be fairly close to the water’s edge, or go down by the lake which is just a ten minute drive from here. It doesn’t have to be across the globe to be a break or a change of scenery; it can be across the road and round the corner. Anywhere that is not just looking at the same view gives you a different perspective.
     
    Today on the beach I sat on a rock with my feet in the water and thought my own thoughts. It was not a big intellectual exercise, more a slow washing of ideas through my head. I felt in tune with the ocean, pleased to sit and do nothing for a while. I used to do that a lot in my younger days and it is one of the things I have been missing.
     
    When winter comes I will have to find different things to do. There is an art gallery about twenty minutes drive from here and a couple of interesting old houses opened to the public. There is close by a heated pool if I decide to keep up my swimming and of course cheap eateries galore. I don’t have to be bored because I am by myself I can phone one of half a dozen old friends and get company if I want it.
     
    Half of making life good is in the planning, the other half is allowing it to happen and allowing myself to enjoy the break.
  25. swilkinson
    I am feeling much better. Despite the heat and humidity that results in poor sleeping patterns I think I have turned the corner. Looking back I think the fall off the step-ladder set me back quite a bit, with pain at night in the left hip and maybe a *beep* in the armor of my confidence. It doesn’t take much to make a caregiver feel vulnerable.
     
    Today in chat we talked about our emergency plans, not only where to find the supplies, what medications our dear one is on but as thorough as an hour by hour description of the day for the seven days in a week and beyond lodged with a family member so if someone needs to take over in an emergency they can.
     
    If a rock falls on my head and I lapse into unconsciousness I would need someone else to take over. I would need them to know what Ray does, when he showers, what he eats, when he sleeps, how his bed is set up, when he wakes up etc. They would need to know when the carers come in and what they do. That is a lot of detail but if it helps Ray to feel safe then it is essentially what needs to be done. And in order for me to recover Ray needs to be safe.
     
    The talk about emergencies covered a lot of ground as we experience different things, for me it might be bushfires and I have been cut off by floods in the past. For others it may be snow storms or tornados and for Gwen who comes from New Zealand it was the earthquake, not local to her but constantly on the news so a reminder of her need to be prepared. So do we all need to be prepared, even if the emergency never happens.
     
    My day today started as usual showering Ray and getting him breakfast, sorting his medication, finding his money for Daycare. I did an hour’s ironing then off he went in the bus. I went to the shopping centre and did a very quick shop. Now we have plenty of fresh fruit and vegetables in the house again for the rest of the week.
     
    Then back to chat with the girls and Mike, lots of good advice and helpful information exchanged. By ourselves we tend to think laterally, in a group we think outside the square. I am amazed at how a problem turns into a plan as we all contribute ideas. If you are reading this as a caregiver and never get to chat please consider putting time aside so you can come, it is so good to share information and gain the support we all need.
     
    I said farewell to the remaining group after an hour and a half and went down to one of our local beaches. I tried to go there last week but the wind was blowing in from the sea, the waves were high, the seas very rough and it wasn’t conducive to contemplation. This week the tide was out, the sky was overcast but I had a good walk and also perched on a rock and studied a rock pool for a while.
     
    I find the sea calms me down and I love this particular beach with its many rock pools. There is something about watching the minute fish, half an inch long or less, mostly blending into the sandy bottom, moving from one side of a rock pool to another. I think it is the very smallness of the image and the thought that this happens whatever I do. The tidal pool is little affected by mankind and yet full of life, a parallel universe in microcosm.
     
    The Monday and Wednesday Daycare seems to be working well for me and Ray likes Wednesdays particularly as there are four other men there. As he lives with a woman (me) most of the people he meets are other women (my friends) so he lives in a female dominated world. His men friends are no longer around. The exceptions are the male Lions of our Lions Club, the men from our Apex40 Club, some of whom speak to him, sadly some do not, and one or two men from our church. None of these see him outside of the context of the Clubs we belong to. It must at times seem a lonely life to him.
     
    I am glad Trev still comes and goes; today he was under the house looking for camping gear. We always had plenty of that and as he is thinking of camping as a way of getting away for an occasional weekend he is investigating what we have and what he needs to look for elsewhere. He always talks to Ray for a bit when he comes over. Ray wouldn’t initiate conversation now but does give brief answers if you speak directly to him.
     
    We build our “new normal” out of our everyday routines. Every setback takes something away and sometimes life can seem like we are “rearranging the deckchairs on the Titanic”. But we need to consciously and consistently rebuild our lives into a pattern we are happy to live with. Life may be difficult but it is doable.