swilkinson

Staff - Stroke Support
 View Profile  See their activity

  • Posts

    5,426

  • Joined

  • Last visited

 Content Type 

Blog Entries posted by swilkinson

  1. swilkinson
    If you were reading my blogs prior to March 2006 you would have to have been here a long time..lol. But in that period you would have read all my angst at the closing of my old church. This was more than a church building to me, it was the centre of a small community of like-minded people, a family of 25 to 30 , a place where I felt safe, welcome and to a certain degree it was also my comfort zone. The people of the church had been so supportive of Ray and I after Ray's stroke(s) that it was like losing all those people who make your life worthwhile. When it's closure was announced until it finally closed I went through a rollercoaster of emotions.
     
    Today I went to a luncheon for some of the "survivors" of this closure. I have kept in touch with most of them over the two years, a handful I was meeting up with after only seeing them once or twice since then. It was lovely to see them but the ribbons of friendship have unfurled and it was like meeting distant cousins, lovely warm people but not that essential to my everyday well-being. We had some fun and some chat and a nice bring-and-share lunch together, but it was just that, a get-together, it was not a high impact meeting. From that I concluded that I am over it now.
     
    Sorry to those I ran out on in chat today. Wow, it was so nice to see some old faces, some new faces and all of you just ready to plunge into the conversation, join in the fellowship and add to the mayhem. I love chat. And survivors, caregivers, family members etc you do know you are all welcome to any of the chats here anytime. The chat in the caregiver's room is not an exclusive chat it is an inclusive one as they all are here. And the more the merrier. If you are reading this and haven't been to chat do come and try it out, either mine or any of the afternoon or nightly chats. You will always find like-minded people there that you can bounce ideas off and there will be people who are interested in helping you out with good suggestions if you have a problem of any kind. No, we are not doctors or nurses but by heck! we are people with a lot of hands-on expereince!
     
    Ray is asleep already. He wanted to leave a while before the meeting after the lunch finished. I think seeing the people together like that stirred up some uncomfortable emotions for him and he doesn't like that feeling. As he is almost emotionless now in his attitudes it must be hard to feel something you no longer have the words to express. Maybe someone can help me out with how that feels. I know that he walked out the door and along the path leading out to the car and I had to go fetch him. He said he thought it was "time to go home" and I don't think by that he meant the time it was on the clock. Maybe that means that to a certain extent he is still caught back there, and is not really over it. Or maybe it is in a way painful for him to revisit some of those memories. Or maybe he is just tired, who knows?
     
    I am still having on-going problems with my care provider. Why they can't just roster a couple of people every week to shower Ray and one on Fridays to do his shower and the two hours of respite I can't work out. How hard can that be? Okay, I am not their only client and I know some of their workers are probably part timers but I will not accept new people walking in the door every time. I can't put up with them not knowing where the bathroom is, how to operate the shower, where to put the dirty clothing etc. I need someone who knows what Ray needs in the way of care, how his exercises contribute to his balance etc. I NEED CONTINUITY, PEOPLE I CAN TRUST TO LOOK AFTER RAY. You should be able to hear me screaming that from there...lol.
     
    Apart from that it is autumn (fall) and I am getting ready for the Easter long weekend. Trev wanted to take us to the Royal Easter Show ( like a State Fair) in Sydney but at this stage I don't want to push through the crowds to see someone demonstrate yet another appliance for washing windows or cutting down garden plants. And as for fat cattle, oversized pigs, tractors, farm sheds etc do I need to see more of them? No thanks. The arena events, the rodeo and the fireworks I could take but keeping Ray up after dark? I think not. So maybe that is another thing I will cross off the list of things we once used to do - go to the Royal Easter Show X. Still it was nice that he asked us and good that he contemplated pushing the wheelchair for me. Maybe I will find somewhere I would like to go and ask if he will take us there.
     
    For now I would just like to potter in my garden, read a book, put my feet up for a while. And that is what I will do over the weekend, if that is okay with everybody else.
  2. swilkinson
    I just deleted a blog, I don't do that very often but I read it a few times and it didn't at all express what it is I wanted to say. So I slept on it and read it again this morning and it still looked all wrong so I deleted it. Wouldn't it be good if we could do that with the things that go wrong in our lives....lol.
     
    On Wednesday an old friend rang me. She had had a visit from the son of an old neighbour on Sunday. She has looked after the neighbour, just in small ways, for a few years since his wife died. The son rarely visits him and had come across to tell my friend how much he valued what she does for his Dad. He said he is so busy, gets very little time off and therefore can't do much for his Dad. He then proceeded to tell her about a two month trip around the world he has planned for the European summer. At that stage my friend saw RED, but being the lady she is kept her temper until the visitor left. She left it a few days and then rang me on the point of exploding.
     
    I have been a helper all my life, I was trained by my parents to run messages for neighbours, to help out with cleaning the church, then when I was 17 as part of the committee in the local teen club, then in various other ways. I've minded children without pay, looked after sick neighbours etc. The only time I have actually had a material reward was after a funeral the family of one of my neighbours sent me a big bouquet of flowers which was very thoughtful of them. I didn't help people expecting a reward, my Mum and Dad insisted that we help without expecting pay, based on the old traditional belief that our reward was to come in the hereafter. Of course. But it is NICE if the person you are doing things for appreciates it. That is an added bonus.
     
    I have had a lot of help since Ray's strokes, not from people who I guess I would have thought "owed" Ray some help in return for what he had done for them. But unexpectedly from people I hardly considered friends, just pleasant acquaintances. The shower room built by our friends from Apex40 is a good example. After Ray had the fall at the beginning of last year they asked was there anyway they could help us. I said we were having trouble with the bathroom and before I knew it the shower room idea was concieved and put into operation, and now we have the benefit of that every time Ray has a shower.
     
    We all vent from time to time about those who do not step up to the plate and help out. Those siblings or children who could help but don't. But very few of us write blogs or posts applauding those who do help us out. There are not a lot of friends and neighbours listed in the "100 things I am grateful for after the stroke" but they deserve a space there if they have helped in your recovery as a survivor or helped with your survivor as a caregiver. In some cases it is neighbours that form the backbone of support teams and help out when friends and family members fail to come in and help. Not exactly fair but it is what happens sometimes.
     
    I have been guilty myself of saying: "Mum and Dad are old but not a lot of trouble as they have excellent neighbours" what kind of dreamworld was I living in? I worked and I popped in and saw my parents a couple of times a week, maybe doing a few odd jobs for them but prior to them coming to live with me I had no idea of how much "looking after" the neighbours were doing when I was totally unaware of it. So I am as guilty as the rest of relying on others when I should have been the one providing the help.
     
    But even now, with Mum in the Dementia Lodge and Ray receiving various services that keep us going I need to be aware of the need to say thank you to all those who help us. There is the pay of course for the paid workers but it is also nice to be thanked. Ray always says: "Thank you for all you have done." to the workers as they go. It is one of the really nice things about him. Be nice if he remembered to thank me too but that's another story...lol.
     
    So this is what I originally wanted to say, sometimes we give, sometimes we receive. Of course we are MAD when the amount of time and money we have expended is not appreciated. And sometimes we need to express that. But we also need to express thanks to those who help us.
     
    So to all here who provide this site and those who provide support to me:
     
    Thank you very much. (((Hugs))) from Sue.
  3. swilkinson
    "You are so beautiful and I love you" says a soft voice. I look into his blue eyes and he takes my hand in his and gives me a loving smile. This would be wonderful if it was the man of my dreams but we are in Mum's dementia lodge and the man who is holding my hand is a resident. He was once a high ranking government official and he is doing and saying what he is because for some reason I remind him of someone he once loved. Aww geewhiz. At least someone loves me.
     
    Not a great week this week. I feel as if I am on the boil all the time, as if just under the surface is a geizer about to pop. Yes, I did have the three day break but I had the visitors too so I guess that negated the "rest and relaxation" idea of the time off. I haven't been able to get to my dementia support group for a couple of meetings nor the stroke support meetings so somehow I feel "unsupported" again. It is back to "Mum can handle it", "Sue you cope so well" etc. I tell others how to fix their problems while my own unravel at the edges.
     
    Ray is fine for a while with the dementia and then suddenly seems to have forgotten one or two things. He is almost emotionless now. As I sat in Nareen Lodge and listened to the protestations of love I wondered how long it was since Ray has said "I love you". Maybe a couple of years, maybe more. He was never an emotionally expressive person, he was a practical person and once said he didn't have to say: "I love you" as I could tell by all the little things he did to please me. So now, long out of the habit, the words are locked away somewhere in the past.
     
    I have been having a "discussion" with my care provider. They have decided as an Agency that you have to "trust the service, not the person" so the nice male nurse we had has been reassigned and we have various people walking in and out of our house. This also means I lose the first twenty minutes of my hour while I tell them where everything is, what they have to do etc. It also means greater confusion with Ray as they rarely say their names often enough for him to figure out who they are. I wish I could say I don't need the service and scrap it, but if I had to shower him every day and went without the three hours respite on Fridays I would probably be in the next room to my dear demented mother.
     
    I have as usual been trying to find positives in all of this. Hmmmmm....thinking...thinking....
     
    I went to a "Womens World Day of Prayer" service this morning. I chatted with a few ladies I don't get enough time to talk to after church. By the time I have taken Ray to the toilet and settled him with a cup of tea and some refreshments the others are settled in little groups and I don't like to try and break in. I also saw a few other familiar faces from other denominations, funnily enough we often bump into each other at functions and funerals. Even with 350,000 people on our coastal strip that is possible. It is good to be in the company of other Christian women. Not that that is where my friendship base is as I have friends from all sorts of backgrounds and from many different places. I am so lucky that way.
     
    I also met the "new" Captain of our local Salvation Army and told him about my two Captains slaving away in the service up at Cairns. I think he was quite interested as this is his third posting and so far he hasn't left New South Wales. He has two children and his wife was a pre-school helper this morning which was why he had taken her place to come and do the Bible readings at the service. Like our two they form a "tag team" and work around family engagements.
     
    Maybe this period of my life is teaching me to live more "in the moment". I have less and less free time now. When I do have free time I don't always know what to do with it. Hard to get to a class when your hour off is 8.15am - 9.15am, or to meet up with friends when you may be held up or have to cancel at a moment's notice. So I have to live life in a way that suits me, in the moments that are not committed to looking after Ray. In the afternoon when he is asleep I can come onto the net, pull up weeds in the garden, read a couple of chapters of a book. Little things that make me feel as if there is small amounts of leisure in my life.
     
    Now maybe tonight I will dream someone is saying: "You are so beautiful and I love you." But maybe not a strange man in his pajamas, but George Clooney at his lounge lizard best.
  4. swilkinson
    I have a new neighbour two doors over. I said a few words to her last week, another few sentences yesterday morning. Yesterday afternoon I was dressing to go to our Lions dinner and there was a knock on the back door. There stood my new neighbour with two glasses of wine. She said she needed to talk to me desperately and it seemed she did. She is taking a course in "Caring for the Aged" and had just hit the subject of DEATH. It had really pushed all her buttons and she was a mess. She had come home to her two kids and burst into tears. I guess there is more to it than that.
     
    I only had half an hour so I gave her a potted version of my encounters with counselling and death both as a telephone counsellor and as a hospital chaplain. I explained the "take a step back" theory which helps with counselling the family straight after the event ( it is "their" grief, not yours, you are just assisting them with it) and she seemed ok. She does her first day of "pratical education" on Friday and was sure she would stuff it up. I made all the usual encouraging comments. Luckily a phone call cut us short or I would have been late for dinner. I have an idea it is an ongoing dialogue though.
     
    I have a couple more people from Dementianet interested in ringing me occassionally. I don't mind as long as it is after 9.30pm as Ray is in bed by then and I can concentrate on what they are telling me. I am in no way a counsellor, here or anywhere else, I am sure that is obvious. But I do have a lot of experience, both because of my age and the life I have lead. The two main areas, stroke and dementia I can only base on my own experiences dealing with stroke and vascular dementia with Ray, Alzheimers with Mum. Mostly people just need to vent, and maybe have someone to bounce their ideas off. Either way I am willing to spend an hour doing that.
     
    Ray has been "off" the last couple of days, his sugar reading has risen, he looks worried, frowns etc. He has also been much slower ( if that is possible) and quite unco-operative. He hasn't expressed any new concern but then he doesn't talk much now. As usual the complaints begin: "It is all very well for you..." He also seems to want to just sit, sit and sit some more, not good for his walking, balance etc and says he isn't sleeping although he snored most of last night. I will leave it a few days and if it continues maybe go to the doc for an opinion. He has had recent bloodwork and I don't think he has a fever so...????
     
    Maybe it is impossible to counsel those you love and are closest to. Trev has had problems at work and although I have made some suggestions it is not really appreciated. He too just wants to vent, he probably knows what the answers to his problems are and doesn't need me to fix them, just to make sympathetic noises. As he works with ex-drug addicts this probably explains why there always seems to be arguments etc and it is harder for them all to work together as a team. It is good work if you have good results but sometimes frustrating when all you see is the same old problems surfacing.
     
    The days are cooler this week and so are the nights. There are signs that it is autumn (fall) already and so it may be a long cold winter. I hope it is not too cold as our open plan house is hard to heat and so I "spot heat", just warm up the room we are using. This means leaving Ray mostly in our living room and taking meals etc to him. It also means less time on the verandah, more time in the chair or on the bed. So I wll have to work out how to get him to exercise inside instead of on the verandah on the colder mornings. I also need a means of warming the shower room as it is on the outside wall of the house, unlike the actual bathroom which is in the middle of the house.
     
    I have extended to a lot of people on my email list an offer to have them visit me in March. I was hoping to generate some interest in coming to see us, particularly for people related to Ray, that way. He is so much more confident here in his own home. With the dementia he is getting to the stage where going to a new place, meeting new people etc seems to send him into confusion so while he is still "okay" with visitors I would like to have some of his cousins etc come to see us here. By the response I have had so far I guess I am pushing my luck.
     
    It is two years now since we went on that last bus trip. We did two a year for six years, they varied in length from 5 - 14 days and we saw some wonderful places. It was obvious on the last one that we were too slow to even keep up with the eighty year olds. Such a pity as it was a life enhancing experience for me, a window onto the rest of the world. Now if we go anywhere I drive. If it is further than a couple of hours drive Ray gets agitated. It is partly a toiletting issue and I think partly a feeling that life is out of control for him. Here is his world, a small space where he feels safe. He can still do church, Lions dinners, the local shopping centre and a few other places. But in any new place the agitation appears, he is clumsy, frowns a lot, chokes on his food etc. I hesitate to even go on day trips now.
     
    I'm listening to the rosellas arguing in the trees, they have a series of screeches probably music to the ears of other rosellas a bit harsh on my ears. Because of the late rain we also have a lot of late blossom and they are very busy, being honey eaters. There is a joy in hearing the sounds of nature around. I'm listening with my heart and drinking it into my soul.
  5. swilkinson

    she's just like.....

    By swilkinson,

    Sorry to the people in chat that I ran out on yesterday. I was a little distracted as I had visitors here and not just any old visitors but English visitors. I also had my sister here and I could just hear their voices from here, and not what they said so I was a little distracted and wanted to get back to them. I am sure that you all did very well without me after the first hour...lol.
     
    The visitors had been invited, on impulse, to stay overnight. This was a big committment as I had last met *M* when I was five or six and never met her husband. They have a daughter who came to Australia on a working holiday and has just decided to apply for permanent residency so may be here for some years to come. *M* is my mother's step-mother's niece and while not a blood relative one who's mother both Mum and I were very fond of. Ray and I visited her mother on our 1994 trip to England as she lived on the route of our tour to Land's End. So it was to satisfy my curiosity that I invited them to come up and stay the night.
     
    Ray is away at Camp Breakaway for three nights, will be home around 10.30am tomorrow. He will be well looked after, fed and attended to in the shower, entertained throughout the day even tucked into bed at night. He might give me a passing thought but on the whole will just enjoy being where people make him and the other 23 guests feel special and loved. It really is a beautiful, tranquil place too, so a rest for your soul.
     
    My sister came early and the visitors had not arrived so about the time I thought their bus would come she went to find them and brought them here from the bus stop. As soon as I heard *M* speak I knew she was okay, she has a way of talking as if she is smiling and I did like her right away. Her husband is nice too... in the somewhat salty way of an ex-Naval man. The four of us had lunch and a chat till mid-afternoon and then went for a two hour scenic drive around some of our beautiful beaches before going out to dinner at an Italian restuarant which I recommended and which fortunately lived up to the recommendation...whew!!
     
    After dinner Julie went home and the three of us, sometimes joined by Trevor, chatted till almost mid-night. It was so nice to catch up on news from both of them, his naval career, her time as a schoolteacher, news of our kids, news of their kids. I have seen my Mum's step-mother twice since we came to Australia in 1955. Not a lot for someone who is actually my step-grandmother. I didn't see her on either of my trips to England as both times I was told "it is not convenient". So I was glad to have this small family reunion. I don't think I will be going to England again but have a warm invitation to stay if I do ever get there. Lovely to be so relaxed in the company of people who are really strangers in some way, distant cousins in another. For a little while it reminded me that I am joined to a large group of people who are seperated from me by distance, not by intention.
     
    I had plans for this afternoon that included taking a walk on the beach but wouldn't you know it...it is raining again. Trev is home and said he'd take me to a movie this afternoon so we might do that. We might see "The Bucket List". It is good to do something with one of your children sometimes. And with Ray in my care that is often not possible, so I'd like to take advantage of this opportunity.
     
    And so to finish the title of this blog. SHE'S JUST LIKE HER MUM...isn't that wonderful?
  6. swilkinson

    becoming an anchoress

    By swilkinson,

    Anchorites ( female - anchoress) were like hermits or enclosed monks but solitary. The anchorite/anchoress lived in an external room attached to an abbey, cathedral or large church. Their task was to have a healing presence. In exchange for food or charitable contributions they listened to the problems of all who came to their window set in the wall that faced the outside world, and agreed to pray for them for set periods of time. There was no "fee" the obligation was on the anchorite/anchoress to pray, day and night, for the "souls" of the parish people with special requests as presented to them. This was their duty and their life.
     
    The anchoress we studied during my Spirituality course was Julian of Norwich. She was a visionary as well and I found her writings very touching. But as a past middle aged woman my spirituality cannot imitate hers. I am older but not as wise, busier and less self-sacrificing and yet I feel that in many ways I am becoming like her, solitary yet attached to the church on one side and the world on the other. It is a strange feeling indeed.
     
    This has been a much more peaceful week than last week. The routine resumed with a few variations. We had someone who was not Jeff on Tuesday. Now I find having someone new and strange coming to shower Ray really cuts off my respite time. The new person wants to know what the routine is, where eveything is, like the padded underwear, the spare clothes, the toiletries. In some ways most of it is glaringly obvious but somehow the new person needs to be walked through it all. None of them understand why Ray is doing the exercises he does. None of them time him properly so the little rascal knows he can bamboozle them, get through them all in ten minutes and sit down to do his puzzles. Fat lot of good that does his shrinking muscles and bandy legs eh?
     
    On Thursday it was Jeff, general rejoicing and off I went for a walk. Came back and stayed home for a while for the social worker from the organisation that provides Ray with Camp Breakaway. He goes there Tuesday till Friday next week. She just needed to update the forms and add the two new tablets Ray takes, the "Flomaxtra" for the "flow" problem and the iron pills for the anaemia. She filled in the forms in about ten minutes which was good. Then Ray and I went off shoppping as usual.
     
    We hit a problem at the shopping centre at lunchtime as Ray had one of his "shove the food around the plate with the fork" times. Usually he loves the seafood omelette we regularly share. It was his favourite next to fish and chips. But this week he just tossed it around. That is when I first thought that soon there will not be excursions like this, soon the effort to get Ray to eat out will outweigh the benefits. It is a sobering thought. At the moment if he is dished up too big a meal at Lions or somewhere else I just divert some of the food to a bread and butter plate or somewhere else, cut up the rest into tiny pieces and he eats it. Naturally he has been sick a couple of times and had a few coughing fits but generally he just eats slowly until he is finished. He doesn't sit and play with his food.
     
    He has some new ways that seem to indicate that the dementia is deepening again. He doesn't answer sometimes when someone is talking to him, just stares straight ahead. I know it is not his hearing, I don't think it is because he dislikes the person or even that he just can't answer the question. I think it is more like a widening gap between what is said and him formulatting an answer and replying to what is said. He seems slower in a lot of ways. I am finding it more time consuming to do something like getting ready to go out, getting him out of bed and dressed, him having breakfast or a simple snack. The morning tea is more likely to be only half drunk and stone cold in the cup rather than him drinking it and enjoying it.
     
    Today again it was not Jeff. The person today was a small, past middle aged woman who seemed a bit flustered. She kept telling me she had had lots of experience in nursing homes. I stayed on for twenty minutes or so after she came but she seemed okay so I went off about my Friday morning business. It is a bit of a worry though leaving someone new with Ray for three hours. He doesn't get respite next week as he will be away Tuedsday to Friday so I will see if Jeff turns up the week after. If not then I will ask for a review of hours and treatment levels etc. I will remind the supervisor Ray has dementia and can't cope with change and say I expect to have at least the same person a couple of times a week...sigh.
     
    So as Ray is less easy to get out and about, as he fights change and clings to what is old and familiar I expect that it will be harder for me to get out in the world as much as I am able to now. That is when I shall become an anchoress. Only my anchor will be not to the church but to the house, and the outside world will become the little cyberspace I occupy here and links like the telephone, bringing the outside in.
  7. swilkinson
    I'm going to start writing this and stop when I think I am finished. A good story should have a beginning a middle and an end. The funny thing about life is it is all "middle". Most of us don't remember the beginning, and if you are reading this you haven't got to the end yet...lol.
     
    In April 2006 I posted my Bio, here is a link to it:
     
    http://www.strokeboard.net/index.php?autoc...=si&img=912
     
    I wrote it as requested by Lin and a few others. We have a lot of Survivor bios but not a lot of Caregiver bios. I recommend everyone reads the bios as like the blogs they give a real insight into the lives of people on the stroke journey.
     
    You can read about our life in the past couple of years by clicking on archive on the right hand side of this blog page and reading blog after blog describing our life. In my blog you will read about our family, our support people, our everyday ups and downs. You will also read of those moments of frustration, joy, despair in fact all the emotions common not only to caregivers but to most of the human race. A lot of it is couched in light-hearted words that sometimes belie the strong emotions that I am feeling as I write. It is not that the blog is not real it is just a more clinical and sensitive rendition of life than I would probably give you if we were talking face-to-face.
     
    We all think that because we are involved in the stroke journey we are special. A stroke is just a traumatic event, a brain injury. It often seems like an irreversible event, one you get used to but never get over. I realised that today when we were at our stroke suport group. We didn't have a guest speaker so a few people got up and talked about their lives. I have noticed that a lot of people say their lives had been ruined by their stroke, very few talked about the joys that had been brought into their lives by the stroke, today a few people did just that. Like here they thanked people for their support and said what a differnce it had made to them.
     
    This started me thinking about the last eight years from that point of view, what have we lost and what have we gained? I think you know what we lost. A lot of you have lost the same things. We lost our jobs, our incomes,our mobility (Ray) our freedom (me), our future income, prospects, our ability to earn our own living, pay our own way. With this we also lost that trip around Australia we had planned, the apartment on the north coast etc. So we lost a lot of what most people think of as being central to their lives.
     
    But we gained so much. Patience is no longer what I seek but what I have. I have patience with Ray when his mind or his body lets him down. I don't mean I have patience every time he has an "accident" I mean overall. I have patience with his slowness, his memory lapses. I have patience with myself when occassionally I "lose it" with him. I know this is not the end of our relationship it is just a single incident and tomorrow I will try to do better.
     
    I have gained time, I don't work apart from looking after Ray. I do work inside and outside the house, I do all the housework, all the cooking, cleaning, ironing, gardening etc. But I do it at my own pace. I am my own boss. I decide what time I devote to which task. Okay, maybe that is not true as one of those "accidents" usually gets in the way of all my plans, nothing like a large load of washing just when you want to do something else. But one thing about all of this is that it does give me some sense of freedom. It wouldn't appear to but it does. I still feel as if I have some choices in the detail of everyday life. I am "queen of the house" something that would not have happened if Ray had not had the strokes and we had not had an early retirement.
     
    Ray has freedom to sit in the sun, he sits in a comfortable chair on the front verandah. He says :"this is the best thing I ever did" and he means it. It is as if he prepared a special place for a future time in his life. Every man needs a special place and the front verandah is Ray's. He goes there whenever he can unless the rain is beating in that way. A part of every day is spent there. I go out and join him for coffee, I have a read sitting beside him sometimes but mostly he is there on his own, it is his place. It is the best place to see the neighbours come and go, to wave to those who know him or those who just wave to the "guy who is always there". That gives him a feeling of still being a part of ongoing life.
     
    We have learned to pace ourselves, we have learned the purpose of routine as the framework for our lives. I admit that we are no longer spontaneous and I wish we could somehow get back to the stage when we could just "pack up and go". A picnic, a trip to the beach, even a few days away would take hours not days and weeks to plan for before the strokes. But a stroke survivor who needs a wheelchair, medication, aides and special equipment is not real portable. I do miss that now. But the routine itself can be pleasant. A cup of coffee halfway through the shopping trip, bumping into friends and then standing having a chinwag is very enjoyable. Okay, okay I AM one of those people who block the aisle (and I know people hate that) but who cares? I am retired, right?
     
    So I want you to think about the JOYS of post-stroke life in your household. We have to deal with the woes, the falls, the continued ill health, the lack of progress etc. but do we count up the laughs, the cups of coffee we can now share with our partners at a leisurely pace, the phone calls we are at HOME to receive? Do we think about those who have helped us and still support us? Do we rejoice at the friends we have ? And those new ones we have made because we joined Strokenet? I never would have gone into chat but for the fact I found this site. And then, perish the thought, I would have missed out on getting to know all of YOU. Think of that.
     
    That old Sunday school song: "count your blessings" is replaying itself over and over in my head. Count your blessings or your joys - a roof over your head, a pillow under your head, bread on the table. Look around, there are a lot of things still in our lives to be thankful for. Count your joys and not your woes for a change.
  8. swilkinson

    more little things

    By swilkinson,

    In the 17 years since Ray's first stroke and the eight years since his major strokes in 1999 I have experienced a wide range of events. Some of them have been good, some of them not so good. All of them have had a lesson for me to learn. However much at times I have resented the changes I know that I CAN change and eventually do. A large Sydney store chain had the motto: "As I change I grow." and there is a certain amount of sense in that. Change does bring about growth and a new steadiness and strength of character. That is why people think as they come to acceptance that they have GAINED something from a bad experience.
     
    In the last few months I have been reluctant to post comments on some threads. As a caregiver for over eight years now I am WAY past some of the emotions that are hot and strong when your survivor first strokes. That first flush of anger, those flares of resentment, those screams of frustration and cries of "why me, why him?" are mere echoes now. As each critical event occurs though I go through the anger, denial, plea bargaining, researching, arguing, negotiating and eventual acceptance. Each time maybe it has a little less impact, as I am a little more cynical or resigned or whatever to the fact that life does not always go the way I want it to.
     
    Yesterday I took Ray to his Scallywags BBQ. I had agreed to go with one of the other survivors wives to do lunch. I don't know this lady well but thought it would be okay. And it was. But she talked probably for four hours straight. I think a dam of words were released in that time, some of the things from early in her life, others since her husband stroked in 2002. The post-stroke events echoed some of ours but I was interested that she had chosen an entirely different way of dealing with stroke to what I had done.
     
    When Ray stroked in 1990, he had six days in hospital, six months of rehabilitation and went back to work, I did some retraining and about a year later went back to work too. But Ray had huge fatigue issues so although he worked I took over most of the things he had done at home. This allowed him to sleep a lot and we still had a fairly good life. I worked full-time for a while and then part-time. He worked full-time so we had enough money for a few holidays, a couple of them trips to England and Europe. So we had a few of the years that we had dreamed would happen once we had raised our kids. Then he had the 1999 strokes and you know the story from there.
     
    My friend from yesterday when asked if she would be leaving work to look after her husband said she wouldn't and has used various ways of supervising his rehabilitation and recovery and looking after his welfare since. She talked to me a lot about the frustrations of trying to keep up a high pressure job and knowing that while she is doing this any number of things could be happening at home. I can see that would be so. It is hard to work and worry and that is what she is doing.
     
    She has also volunteered with our main stroke group and I think looking at her few people would see the difficulty of what she is trying to balance in life, the full-time work that pays off the mortgage, the role of caregiver, wife, mother and daughter that she feels she is failing in. It certainly is a juggling act and I really admire her for it. But I can also see that sometimes because she seems to be coping so well people fail to see that she has any problems at all.
     
    We need to be more truthful, upfront and honest in our words and actions so sometimes the people who should be caring about us can realise the price we pay for trying to do so much. Particularly the siblings of the survivor and his/our children. We should not appear to be doing so well that they can withhold the help and support we sometimes so desperately need. Thanks to her I now feel I have a better grip on the plight of the working caregiver and the added frustration that that brings to the caregiving equation. I don't think I would have had the option to leave Ray at home with his deficits so I didn't have to make that choice.
     
    Last week our northern family were attending a conference at a city called Mackay about eight hours drive south of where they live in Cairns. On Friday morning's news were reports that Mackay was flooded after receiving eight inches of rain in a five hour period! Boy was that a deluge or what? So about 8am I rang Shirley on her mobile phone and she told me that luckily they had left the previous afternoon and journeyed six hours before stopping for the night so they were well out of the flood area. I was so thankful and with my mind at ease went about my days work.
     
    But her mother-in-law didn't ring and spent all day worrying about where they were, how they were getting on etc. By the time they got home and she was able to contact them she was in a real state. Kind of reminds me of what we all do when we don't get the information we need to make right decisions -- go into panic mode. The fact that she is still in the grieving process for Craig's Dad, her beloved Don who died only last November probably added to the panic she felt too. It is hard to be rational sometiimes when a little voice in your head is saying: "What is going wrong now? Why is this happening to me?"
     
    There will always be some little things going wrong in our lives, sometimes a series of them that contrive to push us over the edge into insanity. But we must remember we are strong, made so by the mountains we have climbed over on the way to where we are now.
  9. swilkinson

    the little things

    By swilkinson,

    It's raining again. I know half the district is rejoicing and the other half is growling. I am in the second half, two big loads of laundry almost done and down comes the rain. I usually sun dry my clothes but today they will be hung on airers and draped around the place. I don't consider that an electric clothes drier ( at a cost of about 85cents a load) is a good investment when sunlight is free, but it does need to be fine.
     
    We went to the bladder specialist last week and discussed Ray's need for an operation to clear up his bladder problems. The main sticking point is that he would have to go off Plavix for ten days and the bleeding could last for up to six weeks. There is a danger of infections etc. Yep, I know all that as an older friend has just gone through the same procedure. In the end the urologist admitted he didn't really want to attempt the operation at this stage. So it is on with the medication that Ray hates ( he says they give him more frequency at night, so less sleep) for a couple more months and then a review of the case.
     
    We went to the local doctor yesterday. The bloodwork showed up a problem that has been around for a while, Ray's kidneys are not doing so well. Nothing life threatening as yet but each set of tests shows kidney function weakening. Yep, that is the diabetes/stroke combination at work. We all know what the problem is but none of us as yet know the solution. We see the kidney specialist every six months so no appointment till the end of April. He will be away in March, maybe skiiing in Colorado as he has a photo in his rooms of him skiing there. Ah, the life of those who tend to our medical needs, so different from our own!
     
    For once Ray's blood sugar results were good, but he has anaemia again. This seems to be another problem that comes and goes. Now the solution is a needle a week or another medication. I went to the pharmacy to get this over-the-counter product and the nice girl behind the counter tells me he needs to take it with orange juice, not the commercial kind but home squeezed is best because it is fresh and has the pulp in. Add five minutes work to the beginning of each day as I hand squeeze orange juice to go with his medication. GRRRR!
     
    Today I got a call from one of our Lions members, they have been given a couple of scooters and I know they want Ray to have one of them. The problem is they are the big old fashioned kind, big and heavy. Neither of them would go into my car and I don't want to tow a trailer behind with it in. Where we live, on the brow of a hill, is not a place Ray could use the scooter safely. At the end of the phone call my "friend" said: "Well, Sue, the ball is in your court, all we can do is make the offer." So does that mean that if I refuse the offer I become the "bad guy"?
     
    It is the little things in life that get me down. I can climb a mountain and stumble over a matchstick. It is no help to give a caregiver more to do, it only helps if you are relieving them of some of the overburden they already carry.
  10. swilkinson

    a pain in the neck

    By swilkinson,

    Sometimes as a caregiver I am so smart. Oh yes, I can do anything. And some days in my haste to do that "everything that needs doing" I do something that capitulates me into pain. There is nothing like rushing something to make you forget the principles involved in the process and down you go.
     
    On Monday Ray had a fall. I was making breakfast when I heard a thump! I called out :"Everything ok?" a muffled voice called back: "I don't think so." Sure enough when I went in there was Ray half-way under the bed. Now we have twin beds side by side so I pulled one across, then the other across. Ray was laying almost face down in a heap. So I climbed over the beds and positioned myself behind him. There wasn't much room but I thought it was an easy lift. Not so, it was more of a drag, lift and roll. I guess somewhere during that process I pulled a neck muscle.
     
    The neck was a bit sore but I had other things to do. Ray appeared ok apart from "losing a bit of bark" a long graze on his arm so we cleaned that up and I helped him dress. He said he wasn't dizzy so I don't know what caused the fall. I don't bother analysing it these days he has had so many. We had breakfast and he still wanted to go to Daycare so we made preparations for that. As soon as the bus went I went out to the car and tried to start it. No luck. It seemed like a flat battery. Now I could have called my company that does roadside assist but I decided to take a day off. There is always plenty to do here and I did some of it. It was still raining so the laundry got left out of the schedule. By the time Ray was back I was quite tired.
     
    Trev checked the battery and declared it deceased so on Tuesday morning I got a neighbour to help me fetch another one. Neighbour had a phone call and had to go so I decided I could put the battery in myself. Right??? Of course. Superwoman was still in control. So I picked it up to position it in the cradle. A feeling in my still sore neck went snap! oh oh. A spasm of pain hit. No worries I have a day to get through here, dose up with pain killers and as we say here: "she'll be right!" Driving to craft was a little difficult as I couldn't kinda look back much but it is only a short drive.
     
    Wednesday morning was fine and sunny, first fine day for a week so I got stuck into the work, still a bit of pain from the neck but doses of painkillers and I was fine! So I did some cleaning too, then my stint on Caregiver Chat. I wasn't feeling the best by now but had promised myself the first fine day Iwould clean the ceiling of the shower room. It has a flat roof overhead so gets damp after a long period of rain and mould develops. A long handled flat mop, bleach etc and in a half hour or so it was all fixed bright as new. Boy I can feel some pain though despite the painkillers.
     
    Thursday I am in real pain. The painkillers aren't working so I add some muscle pain relief and rub in a linament as well. There is more work to be done. The show must go on and Ray has to go to the urologist. Driving works if I get him to sight one way and I sight the way my neck can now move only to the right. We get to the specialists rooms, park quite a way away and I push Ray in the wheelchair up a steep incline through the pouring rain. (Caregivers please note this is not the way to operate with pulled muscles.) By the time we have seen the specialists I am in pain and a bit fuzzy from the painkillers etc but managed to drive home.
     
    By the time Trev gets home I am a mess. Ray is oblivious to all of this, there is still a meal cooking, he is watching tv, everything must have seemed okay to him. What could be wrong in his world? Trev orders me into bed. I go to the front room where there is a double bed and some extra room to toss and turn. He brings in a hot water bottle, more painkillers, different ones from his store. He says these ones are better for the muscles Mum. Sleep, turn, sleep, turn, more hot water, more painkillers, more sleep...etc.
     
    Today Trev took the day off work, took me shopping, carried it all to the car, carried it all inside, packed it all away etc.
     
    I feel so much better. It may be the painkillers are working or because I slept so much I am feeling more rested. But I think it is more the fact that for once someone saw my pain and did something about it. That is what is making me feel better. The neck still doesn't turn to the left but the pain in my face and shoulder has gone now and I am sure a few more days and I will be fine.
     
    I think what caregivers need more than anything is someone to acknowledge their pain. I don't mean pity, or sympathy, but the kind of acknowledgement that says: "something needs to be done here". I was lucky enough to have someone do that. And I guess not beng Superwoman is okay, just for a day or two.
  11. swilkinson
    We had a few people in chat today and we were talking I think about severe strokes, such as Sarah's Gary had and for some reason I typed the title of this blog at the end of the sentence I was typing. I think I shocked myself when I saw it on the screen and wondered why it had popped into my mind. It could be that we have had hints of the old euthanasia campaign back on tv talk shows and I read an article in an old Readers Digest on a mother who "euthanased" her disabled son. It is a big topic and one I don't want to cause a fuss over but we need to think about it from time to time.
     
    I wonder as a caregiver if I do harm sometimes when I tell Ray things. Like all caregivers I find it hard to break it to Ray that I am booking him into respite again. I know a break allows me to wind down, lower stress levels, even have some pleasant experiences like when I've visited my daughter and family on my own. But in a way it also subjects Ray to a life not of his choosing. He survives, even thrives on the experience but he wouldn't, on his own, choose it. I wonder in an ideal world if we would find another way of dealing with the situation?
     
    I recently brought home a photo of my Mum one of the aides gave me, she is "dancing" with a lovely young girl who is great with all the oldies. Mum has her hands out but her head is hanging down is what is not usually a natural position for dancing. I guess the smile on her face looks more like a grimace but I can tell by the twinkle in the eye the camera can see that she is enjoying it. I have seen this happen to others too, the concentration of just standing on their feet and swaying to the music overlays the pleasure they obviously feel.
     
    For some reason our son looked at the photo and said "I never want to end up like this, someone should put me out of my misery first." He is young and so isn't fully of the understanding that we cling on to life at all costs. I hate to see Mum like that too, but when I sit with her and she smiles at me or giggles or does anything to remind me of the personality caught in that worn out body then I rejoice that she is still here. I love my mum.
     
    I sometimes wonder what the purpose of the caregivers life is. On some levels it is obvious - one-on-one care is the best, staying at home is what we all want, keeping our spouse, partner or parent at home for as long as possible is what we are all trying to achieve. How often do you hear someone say: "they can carry me out of here in a box" an expressed wish to die in their own home. But with modern medicine and procedures like heart transplants, bypasses etc are we extending life to a point where we don't die of one thing only to prolong a life that becomes of no known worth? It is certainly a modern dilemma.
     
    Now add the fact that we no longer have the village system where extended families all pitched in to look after each other. Our children often go far away from home, like my Shirley and her family living 1700 miles away, and often both people in a couple work and that means fewer family members actually available to help care for their invalided and disabled parent, spouse or adult child. So the burden of caregiving often falls to a single person in the family, sometimes like me the one person looking after parents and spouse or child. A really big burden to bear on your own. And society seems oblivious to the fact that a lot of outside help is needed if this trend is to continue.
     
    I am one of the lucky ones, I am younger than a lot of people looking after a stroke survivor, I have the experience gained by my Lifeline Counselling courses and the Chaplaincy course so I have the right mid-set. I am able to stay home full time with Ray and don't have to go out and work so that is one less complication. I do however have all the feelings of entrapment and isolation from main stream society that often goes with the caregiver role. I have to make the choice to stay, day-by-day, and so far, so good.
     
    And so it does come down to choice I suppose. A caregiver chooses to stay. Whatever the pressure from inside and outside, he or she stays. There are a lot of circumstances where this is just not possible so an alternate has to be found. Someone else caregiving, paid carers, a SNF, nursing home, group home etc. Some other way of looking after a person who needs 24/7/365 care. Some people are capable of making the choice for themselves, some are left with kin making the choice, I guess for some it falls to a guardianship board or some other body to make the choice on their behalf.
     
    I'll look after Ray as long as I am physically and mentally able to. I'll try and get the help I need as I need it to make this possible. I will try to take regular breaks, no matter that some times I feel guilty when I do so. If I break down who else will step up to the plate and take care of him?
  12. swilkinson
    It's Sunday today. Fine, a little too hot, even the breeze is hot. Looks like summer is back again. It is the Australia Day long weekend. A few years ago our national government said we were going to celebrate on the day, January 26th, no more long weekend, this year it is a Saturday and we still have a long weekend. Ah well, it is nice for families to have a long weekend to finish the school holidays so I am not begrudging them. But I lose a day off, no Daycare for Ray to go to so tomorrow I won't be able to do all my usual Monday things. I am sure I will still survive, just feel tireder by the end of the week.
     
    Yesterday was a really good day. We had a service to celebrate Australia Day followed by breakfast at church. As entertainment there was a choir singing Aussie songs, the old and the new. It is a bit emotional singing all those songs that remind us of our pride in our country, and it brought tears to my eyes. I guess every other country does the national pride thing occassionally. I've been an Australian citizen since the early '80's. I was born in England and came to Australia in the days when you automatically became a permanent resident if you were accepted as a migrant. I decided to become a citizen for a few reasons: Ray is an Australian, my kids were born in Australia and it seemed odd to cling to the fact that I was born elsewhere and talk of England as "home" so I applied for citizenship. I am a proud Aussie now.
     
    Then after we came home I did a Saturday clean-up, laundry, ironing, a bit of clearing out. Then it was time to clean ourselves up and go next door for a neighbour's BBQ. We get an invitation for dinner with our next door neighbour a couple of times a year. He is a competent host and it is always good food with some thoughtful preparation and deference to Ray's needs so very enjoyable. Last night was nice, some of the neighbours we knew and a couple we didn't, about twelve of us in all. Good food, good company. It was a pleasant night outside in his back courtyard where we ate and the temperature was perfect. We didn't come home until after ten.
     
    There are not a lot of places we go and enjoy the experience these days. Ray's routine doesn't give us much freedom to accept invitations now. I remember I wrote some time ago of how going to a party operates for us. I have to prepare Ray to go. This starts in the morning with psyching him up. He needs to be in the mood, prepared to wake up early from a nap, have a shower, consent to putting new clothes on. Maybe the meal will be late so I give him a mini meal to take his tablets with. Then I have to prepare myself to go. I have to prepare any food we take with us, any giftware wrapped and ready, everything into the car. I have to drive there. In summer this is fine, in winter it can be a marathon.
     
    Going next door was only a problem as far as walking there went. Out the front door, down our steps, down the path, across some uneven ground, up the next driveway, up a path, up some steps with no handrail, along the verandah, through the house, down some steps into the back yard. We had lots of offers of help but Ray and I are in a routine and walk in unison with me giving muttered instructions. The trip back home was in the dark and Ray was very tired but Trev came over and half carried him across all the hazards. He had declined the invitations to come over, he enjoyed a meal on his own without us I think. Living with your parents one of whom is an invalid is better if you can spend some time alone. I can relate to that big time.
     
    Today we had a sermon about change. Not the kind of change where you move, but where you change your attitude towards something or someone. It was thought provoking for me as I have been thinking a lot about change. It could be because we are that period when all our appliances are close to breaking down, the cupboard door hinges going etc. Outside the gutter leaks, the fence wobbles and the car sounds as if it could do with a tune up and a set of new tyres. The normal changes that the wear and tear of living life day by day brings. Each change brings with it a need to make some decisions. Will I have a new fridge/freezer or seperate entities? If I need to have a new kitchen will I need to change a lot of things around? Maybe it is time to decide if I want a new stove like I have or a combination of hotplates and oven? Moving would be easier wouldn't it?
     
    The car is now three years mine and it's warranty runs out soon so do I need to think about getting another car? No, no, no - I have just got used to this one! And finding this one was difficult as I wanted one that I could lift the wheelchair into in an upright position as it is so much easier on my back. Okay I could have one of those gadgets that lifts the wheelchair onto the roof but that reqires parking in a place where that is able to be done. It is all a matter of weighing up what needs to be done and then doing it. I find all this tiring in the extreme. I probably missed most of the sermon because I was thinking along these lines instead of listening.
     
    Then there was a potluck lunch as a farewell to a couple who have been tireless workers, they are moving on to new endeavours, she for further ministy training, he to help as a volunteer in an organisation which needs his pastoral skills. You don't replace people like that - others take on some of the tasks but there is always a feeling that someone is missing. I don't agree with those who say everyone is replacable, they are not. We are all individuals and bring a unique character to any task we take on. So we all leave a gap that can't be completely filled when we go. Life may go on but maybe without the same rhythmn.
     
    It is easier sometimes to just go on doing what we are doing, to not think about what lies ahead. But that sometimes leads to greater expense as something that breaks down has to be replaced instantly, leaving us with less choice. So maybe by thinking about making changes now in the end we will be better off. And the bigger changes - lifestyle changes - will inevitably overtake us not matter how we plan for them. As long as our attitude is right things will turn out for the best.
  13. swilkinson

    being supportive

    By swilkinson,

    I just talked on the phone for two hours. Well, mainly I listened. It was quite a marathon as the person who rang me was quite emotional. It was a friend from years ago whose church is threatened with closure. So because he knew I went through this just on two years ago he thought I would know "ecxactly how I feel" and so he rang me. I gave a little advice, a lot of encouragement and said he could ring any time he wanted to bounce more ideas off of me. That was about the most I could do, promise to listen to what he had to say.
     
    I have a bit of a problem as the year starts up again of people coming and asking if I would like to go on committees, teach Sunday school, look after a stall at the fete etc. Yes, yes, yes, of course I would like to do all those things. But in reality no I can't. I can't commit to being at a certain place at 3.30pm on a Wednesday every week (Kid's Club), be there on a Sunday morning at 9.30am four weeks at a time (Sunday School) or even organise something once a month. I have Ray to look after. Ray is not an afternoon person, he can't be left on his own so I have to take him everywhere I go. He is ok in the mornings but if I do Sunday school I can't accompany him to church. I'd need to be there early to set up etc so would have to get him up an hour early etc. You can see where I am coming from.
     
    It is not so easy as a caregiver to live a life of your own. But I do try. This means my life is in three parts, those things I do for Ray, those things we do as a couple, those things I do for me. So doctors appointments, trips to specialists, pharmacy, blood tests etc - Ray. Dinners with friends, Lions Club, Apex40, church etc - us. Then there is things for me. This is all squashed into my free time, when Ray is in Daycare etc so it is a small slice of my life. But at least I do have that chance to be just myself. Friends comment on how different I am when I am not with Ray. Of course there is a difference - I am not being Nurse Susie, just funny old Sue.
     
    I have thought from time to time that I am losing my mind, my personality etc. But I was talking to a young caregiver a few weeks ago and she said it is like forming a new community. You leave behind those people who were work colleagues, the people you served on committees with etc and you take up..in my case Strokenet and Dementianet, the people at Mum's Dementia Lodge etc. So you don't really lose those pleasant acquaintances, you just swap them for another bunch. I didn't agree at first, but thinking it over I can see some merit in that idea.
     
    To do anything in life you have to put some effort into it. So I have been lucky in the things I have chosen to do like be involved here as a chat host and at Mum's Dementia Lodge where I talk to the staff, the other visitors, family members etc. I have been to a few social functions at the church and got to know a few people casually there as well as the craft group where I meet the same ladies once a week. I know a lot of people are reluctant to join groups but they can be a great source of support, whatever the nature of the group. So hobby groups, self-help groups etc can introduce you to people who remain pleasant starngers until you let them closer to you to become almost friends. To the shy this is hard I know but most of us can find something to talk about if we plug into special interests from our youth etc.
     
    I joked with a friend tonight that I am fast becoming a "dear old duck". At my last church we had a nice woman in her nineties who had moved up from Sydney to live with her daughter. On her first trip to the shopping centre she ran into a family from her old church..as she left them she heard one of the sons say: "Who was the dear old duck?" She turned around and said : "I heard that." and instead of being embarrassed they all laughed. So that became their affectionate name for her and to the rest of us too when she came with them to our church. At her age, unable to walk fast or far she was our most prolific knitter, knitting rugs for the "poor old folk at the nursing home". Now twenty years later I am crochetting rugs for the next generation of "poor old folk". It gives me something to do and gives others something they need.
     
    So what does all this have to do with being supportive? Lots. There are many ways of supporting others, listening, giving advice, hands-on helping, monetary donations. If you can't manage one way you might be able to manage another. So there is no reason to think there is nothing you can do, you can always do something to support others. In some cases there is a big cost in both time and money, giving up something you want to do in order to to help someone else. Even in extreme cases, like being a caregiver, giving up life as you've known it to that point. But there is ALWAYS a reward, new friends, a pat on the back, maybe just the satisfaction of seeing someone smile and knowing you had something to do with that. It is a benefit to all of humankind when you find out how you can use your talents to help others...in whatever way you can.
  14. swilkinson
    Wow, it is so tiring with littlies in the house. And it has had to be in the house as we have had a very wet three days. But there is plenty to do here, Granma and Pa are really very kid friendly so we have had a great family time.
     
    Trev generously decided to give us all his attention this weekend and the kids have loved the interaction. Wisely he has decided that if anything happens to him ( and we pray it doesn't) then the nieces and nephews will hopefully have happy memories of him. Of course that would apply to the older ones but the little ones are too young to be building memories.I think this stems from Ray's Mum dying when Trev was only two so all his memories of her are the shared memories the rest of the family have all imparted to him rather than things he himself remembers. We all have those regrets from our childhood I guess, of folks we wished we had got to know better but missed the opportunity.
     
    Trev loves to play games with them on the computer. Tori and Christopher are the right age and just learning to be competative, Naomi at three can push some buttons with some help. She was happiest dancing to the songs Uncle plays on his computer. He has some of the little ones favourite songs pre-recorded and puts them on to watch them dance. I crept out and looked at them a few times and it makes my heart really glad to see them all have so much fun together.As a migrant child I missed out on the family interaction once we came to Australia when I was seven and so it is an important part of my life now.
     
    We have had three different BBQ meals, one on Friday night with all the family, last night with just Shirley, Craig and family and Trev and tonight again with all the family. We have such a variety of summer foods that it is easy to have different meats and salads at each meal. The boys, bless them, barbecued and helped with the clean-up or I would never have coped. Ray has picked up an appetite since the kids have been here and eaten quite heartily for him so I am really pleased about that. I have been providing a choice of desserts or fresh fruit so naturally Ray has opted for the sugary desserts but I can hardly blame him for that.
     
    Of course it has been very noisy with five little ones in the house ranging from eight years old to four months old. The cousins love to shriek and yell and run and chase and scatter toys and clothing all around the house. It is like living in the centre of a whirlwind. But it is so much fun for them all. Ray has escaped by reading or doing his find-a-words in his favourite chair on the verandah but today when the wind was too strong and the rain threatened to wet him he moved back into the house. He hasn't interacted a lot but I don't think the little ones have minded that much. Tori and Christopher are aware of Ray's short-comings but to them he is just "Pa".
     
    Tori expressed tonight what we all feel, that it is so unfair that Aunty Shirley and family live so far away so we do not get to see them on weekends like we used to. She is so right. It was good when any of us could just ring and invite ourselves over for afternoon tea or lunch, when we all got together for every birthday, when a phone call would bring them over here. But life is never that simple is it? I can understand her frustration as with two other little ones her mum and dad are unable to promise to take her to visit the northern cousins anytime soon, too expesive for them all to fly and four days by car with little ones is not practical.
     
    It will be so sad waving them goodbye tomorrow as we don't know when they will be down here again, possibly this time next year. I am planning a trip up to Cairns again in a couple of months time for me and then another trip later in the year maybe June or July when the northern weather cools down and it is a good time for Ray to fly. But then we have to hope that everyone's health, particularly Ray's, holds good for that period so we do get to put the plans into practice. And we all know all the things that can and do go wrong as we age eh?
  15. swilkinson

    making it through

    By swilkinson,

    For those of you in the northern hemisphere the Christmas season here probably makes no sense. But picture it as if it is a combination of the summer in July and the madness in December. There is something about the Christmas season here that changes life. It is hot, dry, stormy, it is the seaside season and BBQs and camping, it is family get-togethers and end-of year functions. It is so many things to so many people. And with our mixed culture it more or less goes on till 6th January as the eastern Orthodox people celebrate their Christmas on January 6th! Lucky them as they buy all their gifts for 50% off at the "after Christmas sales".
     
    It is also peak suicide season as the dream of "Christmas with family and friends" downgrades into family feuds,walkouts, broken dreams and the slaughter of ideals. It is the time when people drink more and fight more. The post Christmas bills come in and people realise for the first time that their annual extravagance has them in the grip of debt once more. The impact of road accidents and other fatalies bite and the world seems less glitzy as the decorations in the shops come down and the rough reality of life sets in again.
     
    For caregivers like me the services we rely on are scarce over the Christmas period so we are down to minimum hours, this for me is five hours, showers for Ray on Tuesday and Thursday, three hour minder on Friday. Which means Ray is irritable because he is out of routine and complaining once more that "she is always dragging me around". Yep, those shopping expeditions turn gigantuan as we battle through the tourists that flock here for the holidays season so the three hour shopping trip can easily turn into five hours as we queue, queue and queue some more to get to the check-out,to get into the next queue at the next store. The heat and the noise and the people bumping into Ray's wheelchair, some snarling at us until they see it is "just some poor bloke in a wheelchair, poor coot" as one guy said to his shopping companion. Funny how that "peace on earth, goodwill towards men" feeling evaporates so quickly after Christmas. I just wish it would hang around for a while and see us through the post-Christmas doldrums
     
    Then there is the heat, the hot nights, the humidity and tossing and turning instead of sleeping. I find it difficult to fill the days in a satisfactory way sometimes. Just the lack of normal social structures as our friends are away camping, boating, visiting far-flung family while the grandchildren are alway from school for the seven week summer holidays. Of course some of our friends are the emergency minders while their grandchildren's parents go on working. So ringing them is futile and waiting for them to reply to emails takes a lot longer. Where are you all, I want to cry, why have you gone off just when I need someone to talk to ? The whole pattern of life seems to be shaken up like some bright summer kalaedoscope.
     
    Summer was a time I once relished. Summer meant days at the beach, beside or on the river ( we had a power boat for a while) camping under the stars. We often took a picnic meal somewhere pleasant, somewhere in the path of a cool breeze, after Ray came home from work and stayed out till the first stars appeared in a clear summer sky. Now it means : "how will we get through today?" The heat can mean Ray's sugar is out of whack, he feels clammy and his general attitude is grumpy. It is hard to be cheerful when you don't sleep well. He complains that food tastes strange and just eating hot food is unpleasant. It is okay to spend time on the verandah but mid-afternoon, if he is still awake, he has to come inside as he feels the radiant heat from the sun then. And he is no longer an outdoorsy beach person. He would rather sit in his comfy chair than on a bench near the beach.
     
    So things get a bit fraught as neither of us are in a good mood and I find simple chores take longer. Gardening, usually my relaxation past-time becomes futile as the spring plants wilt and die under the onslaught of the first really hot days and the weeds grow so fast that the mowing man often comes fortnightly instead of every three weeks to keep it all under control. Nothing like looking out at all those weeds where your spring plants once were and thinking that as soon as it cools down, if it ever does, there is that task ahead of you. It makes you feel like putting the whole lot under concrete and pavers.
     
    But we finally make it through. The Daycare bus came this morning and the cheerful crew loaded Ray an board and off he went, he will be back at 2.30pm but he will go straight to bed as being out and about again really tires him out. And next weekend our grandchildren from up north will be here with their parents and our focus will be on them. Spare a thought for friends ringing in and saying: "I thought I'd ring up and find out how you went over Christamas. Seems a while since I've spoken to you and so..."
     
    Yippee, we finally made it throught the Christmas season and back to the safety island of routine again.
  16. swilkinson
    We've all seen those movies where the dispatch rider comes onto the scene covered in blood from an arrow wound, gun shot blast etc. That happened here during chat. I was talking to six or more nice people when in comes Ray blood streaming from his arm, across his shirt, down his shorts. That's blood thinners for you, one small knock and it is a blood-stained version of Niagara Falls. I said "be right back" and took a moment or two to staunch the flow, put on a bandaid etc, a few minutes later he was back, small nick below the first aided spot had started another flow! PLEEEZE! the cure is sometimes worse than the disease.
     
    All in all a good day though. I finally had a message back from my daughter saying they had only had to deviate once to get around the flooded part of south east Queensland, stopping in Gin Gin instead of Gympie for the night. Now they have picked up Craig's widowed Mum and are taking her with them down to their holiday cottage on the plains of the Snowy Mountains. She will get a change of scenery, some time with her much loved grandchildren and a fresh look at life when she gets back home. We will get to see them after 18th January for a few days.
     
    I also had a visit this afternoon from a lady who is one-of-a-kind. At 93 she still has an extensive list of people she visits on behalf of the church. Despite having left the old church we are still on her list so today she brought me some strawberries, an offer to look after Ray "whenever I need it" and her best wishes for the new year. I honestly think there aren't any others like her outside of that generation and when they are gone the world will be a poorer place for their passing.
     
    I sometimes wonder where my friends went. When Ray had the major strokes in 1999 we were still working, still in the midst of life, our social network was vast and included many people. I guess, being naive, I thought of them all under the heading of "our friends". Now I know they were just mostly circumstantial acquaintances, work colleagues etc. They were never going to be there for the long haul but I didn't expect them to drop away so fast. Now eight years later I bump into one or two of them occassionally at the shopping centre. They pause with a somewhat panicky look on their faces, have a few minutes of talk and are off quickly, issuing a promise to phone soon and arrange a meeting etc. We all know that is not going to happen , don't we?
     
    However we still have a handful of people who like us, are willing to be seen with us etc. They provide a wonderful support network, even if not here all the time when they call I am always pleased. We went out with some of our old church friends yesterday for lunch, just ten of us sat and chatted for a couple of hours. Nothing like that feeling of being with old friends is there? And in some cases as they get frailer it will soon be me visting them in their hostel, nursing home etc. You don't desert those who have been good to you over a long period of time. It may be that we will make other younger friends, or we may not. Who knows what the future will bring?
     
    Thanks to all who came to chat today...not a caregiver among them. I do wonder if there is a better time for caregiver chat? But with all our different time zones and all the varied routines that caregivers have, some working, some commuting, some just simply snowed under by the everyday stress of life, we would probably never be able to all get together anyway. I enjoy chat no matter who comes through the "door". And I found out why I didn't hear you all come in. My speakers were turned off. Such a simple thing to disrupt the day eh? So so long, goodbye, see you soon, night , bye for now, toodle loo. It is always good to see you. Remember to drop by next week. Same room, same time, same good time to be had by all.
     
    We may not all be blood kin but we are all joined together by this stroke journey we are all on.
     
     
     
    .
  17. swilkinson
    Well, I threw a tantrum and now I am allowed to chat using Trev's computer. He is sorry he is too busy right now to fix mine so said I can use his for Strokenet...Yeah! I guess I just miss all of you so much that it is affecting how I feel about life...or maybe it is just the plain ol' exhaustion from looking after Ray etc. Either way I will be able to host my normal chat next Tuesday night...so be there!
     
    Just contemplating doing some sewing, you know that pile of..fix the pocket... sew on the button... does that need taking up a tad? that you always put off..and off and off? Well I guess it is time to look at those things and see what is worth keeping and what is going to be pitched out. It is usually a spring thing but as usual I am running a little late. And then there is cleaning to do, and some cupboards that need turning out. All of this is light work, something to do in my spare time...lol. I guess I don't mind too much, it is better to keep busy and not have too much time to think about life.
     
    Reading the blogs I see that for some of us Christmas was great, a family time, a fun time, full of food and laughter and companionship. For others it was somehing to get through and look back on with some relief. I feel that some years too. Fortunately this year Mum was okay, Ray was okay, all the kids and grandkids seemed well and happy. It is a blessing sometimes for life to just be happy and stable. We all know happiness doesn't last but it is like walking through a pleasant valley on an easy path, you may know there are hills to climb ahead but for now you can just enjoy the good times.
     
    Reading some of the letters that came with our Christmas cards was interesting. Some focussed on the travels of the friends, some of what is happening to family and friends, some on coming events. It is great to get a "real" letter these days, something you can put away and compare to next years, or find in a few years time and say: "Wow, life sure changes quickly." I send a lot of cards so I get a lot of cards. Some just come back with "love from Bill and Flo" but some have a few lines scrawled inside or a letter..those are the ones I like best. Some people we only hear from at Christmas time, that tiny contact that means "we are still here and you are still in our thoughts".
     
    Did you make any resolutions worth keeping in 2008 and the years beyond? I challenge those of you who blog here to write a blog about your resolutions and how you will go about bringing them into being. Have a look at Cam1960's blog for real inspiration, that is a great blog! Too many resolutions dissolve in the weeks ahead. How many of us were...going to lose weight...give up smoking...exercise more... really keep in touch with good ol' Aunty June... last year and maybe even the year before that? Time to 'fess up and get it right this year...lol.
     
    I have a pile of books to read, some Clive Cusslers given to me yesterday, a new John Le Carre, a few others of no particular note. I'll take some time to sit out on the verandah with Ray, out on the back lawn under a shady tree, or with my feet up on a stool sitting in my favourite chair. January is reading month. Doesn't REALLY explain why I bought more beads and some wool this morning but the weather will get cooler soon enough and it will be back to the hand-work again. Everything has it's season.
     
    I think one of the secrets of happiness is enjoying whatever it is you are doing. I watched my dear old Mum today as she walked in the little courtyard in the middle of the enclosed lodge where she lives. She looked at the flowers in the garden and smiled, she sat down on the couch in one of the little sitting rooms and fell asleep, she got up and walked around the corridor and settled into a chair in the dining room. None of it seemed an effort, all of it seemed to be just part of her life. I hope it is not necessary to lose our minds in order to get the contentment that just comes from living and being and moving through life as if you belong there. I love my Mum and I know that at 89 I won't have her for much longer so appreciate the time I am able to spend with her.
     
    Oh what a beautiful morning, oh what a beautiful day, I have a loverly feeling , everything's going my way. Did I mention that I also borrowed a pack of six Rodgers and Hammerstein's musicals? That should have me singing around the house if nothing else does>>>>>
  18. swilkinson

    rambling into 2008

    By swilkinson,

    Hi folks and a Happy New Year to you all. New Years Day in this part of Australia is sensational. It is fine, sunny and around 95 degrees with not a cloud in the sky. We went down by the lake for morning tea with a friend and his grandsons and had a terrific couple of hours. We had a walk along the lakeshore, about a mile each way. I was pushing the wheelchair and can tell you I felt every bit of my years by the time we got back to the car. We kept getting off the path to let little girls on new pink Christmas bikes ride through, as it is officially a bike path they have right of way!
     
    We also got an invitation to go visit friends for dinner yesterday and spent about four hours with them. In the end we were all too tired to see the New Year in. We got home before midnight and Ray went straight to bed though I stayed up and watched the Sydney New Years fireworks on television. It is always a terrific show. This socialising really wears Ray out, I lap it up as without the social conatact we would be real lonely so I guess I have been pushing him a bit. I will have to program in a few quiet days for both of our sakes.
     
    Seems we will have to do the computer the expensive way - pay someone! Our lot seem to be working or doing stuff for others so I am still not able to use my computer, it is still in bits on the floor. So no chatting for a while yet. I really do miss you all so just know you are all in my thoughts.
     
    2008 is going to be a good year. That is my one and only New Years resolution. A friend of mine called years ending with an eight the year of the fat man, I remember 1998 as a great year so see no reason why 2008 shouldn't be too. It is a lot about positive thinking so I have decided to eliminate worry as much as possible. Given my nature that may be a pipe dream but I'll try.
     
    We had a surprise this morning as our shower nurse Jeff arrived about 8.30am, his usual time. Unfortunately I had just finished showering Ray. I guess I had assumed as it is an official public holiday he wouldn't be coming. Guess I'll have to pay for that mistake! I am just so grateful for the help we get now. Jeff in particular is good value for money, he is kind and courteous, treats Ray with gentle respect, makes him feel a friend and not a "patient". It is easy to realise that without his help we would be closer to the dreaded time when I won't "cope" any longer.
     
    It is getting harder to handle Ray, no use kidding myself about that. Ray has just started on Flomax extra for his water problems, another tablet to give out in the mormning, this one we have to pay full price for. I guess it may be a while before we notice the difference. Ray is so tired a lot of the time now, and also weaker walking. I know it is not because he doesn't exercise, or make an effort or any reason I can think of, it just seems to be something that is happening to him, cause unknown. Maybe he is having little seizures in his sleep is one of the doctor's theories. I just know it is really frustrating for him and more difficult for me.
     
    January is going to be reading month for me. We have a few appointments already and our daughter and family will be here for a few days mid-month but I am going to try to take things easy for a while for my sake as well as Ray's. It is a necessity for me to feel rested. The run-up to Christmas is always busy and now it is summer, the time friends drop in or invite you over, so I will accept the invitations that I think we can cope with. I can't afford to turn any down without reason. I really need to keep those friends who are still happy to be in our company.
     
    Jean - I finally read "My sister's Keeper" so if I could find the old book club blogs I could add my comments. I liked the book but thought the ending contrived. I could relate to a lot of the trials and tribulations of the mother and the sister. Caregiver over-reaction , caregiver stress and that kind of guilt that results in bad relationships all rang true to me. I try to be "Susie Sunshine" a lot of the time as you know but the stresses do build up, tensions get to breaking point and like most caregivers I have the occassional boil-over. Eight years and counting is a long time to subliminate some of those deeper feelings I guess. Surface views, Sue the angel, underneath....don't let's go there! And I intend to look after Ray for as long as I am physically and mentally able.
     
    Just had a phone call from my Uncle in Canada, so commiserations to all of you who are suffering whiteouts, snow storms, frostbite, wind chills and any other snow related ills. I think I will just be thankful that as of today 2008 is great in this part of Australia!
  19. swilkinson
    Hi all
     
    Have a Happy Christmas - or do the best you can - whichever applies.
     
    I have been off the computer as mine crashed and now at last I might see mine rebuilt, everyone was too busy prior to Christmas. Trev said to do a blog entry so all my friends here will know what is happening to us.
     
    We had a quiet Christmas Day today. I have been aware the past month or so that Ray is not coping with noise, crowds etc. He seems to have more vagueness about him, as if he is walking about in a fog. He can converse on a casual basis, say approximately the right thing so other people hopefully don't notice, but I do.
     
    We have been very busy, yesterday shopping and cooking and wrapping parcels. This morning I gave him clean clothes and said we needed to get moving and he said: "What is so special about today?" He didn't know untill I told him that today was Christmas Day! I think he is not recording as many memories now. He remembers the past still but adventures rather than everyday life. People seem not to be connected to memories either. It worries me as soon I will have to retell his story - as well as I remember it.
     
    Today was church and family day. We had some phone calls, a couple last night a couple this morning. The northern family spoke to all and sundry as Mum Shirley and Dad Craig worked on getting lunch for them all. Tori loves to talk to Naomi and Christopher on the phone and the two brothers and their sister did a lot of talking too which was good. They have Craig's recently widowed Mum and his brother there with them so it is laughter mixed with tears.
     
    The weather was cool here, the food was cold meats, salads, fresh fruits and a delicious pudding provided by a friend of our daughter-in-law. It was a successful day but again Ray participated very little, the three grandchildren milled around but he didn't interact with them. It is a pity to see him going like this as he always adored playing with kids. Even the present opening seemed of little interest to him.
     
    Isn't getting the presents right difficult? I tried hard to get gifts I thought would please and the kids finished up playing with a set of toy musical instruments I had added to the toy box since their last visit. The cacophony of sounds they made certainly wasn't music so I guess their mum was glad the instruments stayed on here! My favourite present was given to me by our next door neighbour. He gave me a gift certificate for a massage and a promise that he would come in and look after Ray while I went! Bless him for his thoughtfulness.
     
    Ray has a urologist now, another medication to take, more tests at the end of January to pay for. Ouch!! it all comes at a price. No option of surgery at this stage, and maybe, just maybe, this will ease the incontinence or radically decrease it. I sincerely hope so as I am tired of wet bathroom floors etc. And the added risk of infections for Ray as well.
     
    Can't say we had a Merry Christmas, but quieter is sometimes better. No harsh words, some kind wishes, a lot of fun watching the little ones dash around, and a thankful heart at the end of the day that all went so well.
  20. swilkinson
    I was just sitting here thinking about Ann, and wondering how she was doing. Ann blogged about not being bothered about decorating for Christmas this year. I wasn't focussing on Christmas much so Trev gave me a talking to and today we did a "stand and throw" decoration, nothing in the centre of the room but tinsel around windows, doorframes etc. And our usual big wreath on the front door. Not a lot of decorations but just enough so that anyone coming in knows it is Christmas. :wreath: :santahat:
     
    We are also having more store-bought and less home-made this year. There will not be any parties here this year. Some years I have invited in friends and neighbours and of course also had family popping in and out. This year one of our families is way up north and not coming home for Christmas and the other family are very absorbed, with a fairly new baby and three children, rightly so. But as those three grandchildren are going to be here on Christmas Day we will make an effort to be jolly. :cheer:
     
    I have invited Tori over tomorrow to decorate the tree. It was a family tradition that Shirley, our daughter, went to her Granma's place and helped put up the decorations and so we have established the same tradition with Tori helping me. Trev has the tree down from it's storage place and I have it half-sized. This was the idea of the nurse/educator at our dementia group who said that when there are children about it is good to keep the tree small so if they do pull it down on themselves it is just a light weight. That made sense to me. Also it is less bother to decorate, takes less decorations etc. :yay:
     
    Tori will stay overnight and go to the church Christmas social with us tomorrow night, it is one of those bring and share occassions and should be quite good. Tori occassionally comes to Sunday school and also to craft group so she does know some of the ladies there. It is an extra time for her to put on her Christmas party frock and go out into the grown up world. Hope she is good for me. :juggle:
     
    She will also come to church with us on Sunday. As we have a picnic lunch invitation she may finish up coming with us on that too. It depends on the weather, if it is thunderstorms like it has been the last couple of days I don't think I will be driving there, but if it is fine and sunny then it will be nice to sit and chat to some of Ray's more distant cousins and do some relaxing. I am sure there will be a few kids there for Tori to run wild with, that is one of the advantages of going out into the country for a visit, plenty of open space. :ChristmasTree: :yadayada:
     
    I spoke to my daughter on the phone for a while tonight, not about anything in particular. It was one of those comfortable rambling conversations you have when there is no real news. Life in the tropical north, like life here, is busy with the approaching Christmas season and summer pursuits. They went to their daughter's pre-school party and Shirley got to spend an hour talking to other mothers. She has also been turning down a lot of party invitations. The life of a Salvation Army Officer is a busy one and she and Craig have a lot to do between now and Christmas Day. Despite the fact that it is summer people still have a lot of welfare needs, even in Paradise. :reigndeer:
     
    So tomorrow I will get up early and tidy the guest room, change the sheets, tie back the curtains. Then I will prepare for the "princess" of our lives to come over a weave her usual magic spell on us. Soon there will be laughter and silliness and above all fun! Sometimes when you get over 60 you forget how to do some things like how to have fun, and how to call up the spirit of Christmas. So we are lucky we have grandchildren to share the secret with us. :secret:
  21. swilkinson

    dancing - yeah!

    By swilkinson,

    Today was our Stroke Support group (WAGS) Christmas Party. I guess 1st December is a good time to start a Christmas season and I was ready for it. Ray and I slept in till 9am which is late for me. It was just gentle rain and overcast today so no brilliant sunshine to wake us up. Trev had to go off early too as he has an "extra" cleaning job and that will occupy his spare time in the next couple of weeks and earn him some extra money too.
     
    The party was held in a couple of rooms in our local club, big area, tastefully decorated, not over the top, plenty of space to move between tables which is what you need when there are a few people with wheelchairs or walkers. There were about fifty people there, men and women, stroke survivors, caregivers and a few miscellanious relatives and friends.
     
    The meal was superb, it was good quality, well presented. And yes, it was turkey, ham and lamb, a very good combination of vegetables, cranberry sauce, gravies etc. Three kinds of dessert, chocolates to go with the coffee etc. The disc jockey played the guitar as well and there was dancing - yeah!
     
    Now our stroke survivors are mostly 50's and 60's, their deficits range from "hard to see any changes" to barely able to walk. What amazed me was that the more affected they were the more they danced! Some danced with an able bodied caregiver, some with a stick, or holding the back of a chair for balance but all danced with joy on their faces! And they whooped and cheered and made a lot of noise while they did it too.
     
    When Ray first had the strokes and we went out I didn't dance. For me it was a sensitivity issue. I reasoned that as we couldn't dance together (and Ray loved to dance) out of respect for him I wouldn't dance either. Looking back that was pretty strange reasoning but it was how I felt at the time. Now I dance. I get in the middle of a bunch of other women with similarly affected husbands and I shake it all about. Ok - stop imagining that!
     
    The nice thing about dancing in a group is that no-one is staring at you, no-one is worried about how you look or how awkward you are, they are too busy having fun themselves to take notice of what you are doing. The guitar player was a nurse who works in rehabilitation and he said he had never seen anyone have more fun than we all had. I felt as if I wanted to hug everyone there. They have through the Scallywags group all been so good to Ray, and through being there among such brave and lively souls I have learned so much about making the most of the life you have - whatever disabilities that life may be encumbered with.
     
    There were a few who didn't dance, Ray didn't. I offered to hold him on the floor but he didn't want to, told me to go ahead and join in though. One couple sat looking fairly grim through all the dancing. He has started having seizures, had one on the day before the womens weekend away which meant his wife didn't come to the weekend. She looks tired and run-down and I can see it has taken a toll on them both. I wanted her to come and dance but I guess she isn't ready to relax, forget her troubles and just have fun yet. Too caught up in the frustrations of sickness and the general unfairness of life. Such a pity as they are both fortyish with small children and a mortgage etc.
     
    The lead up to Christmas can be pretty hectic but it can be a blessing too and a great time to reflect on where we are now and where we want to head in 2008.
     
    Dancing - yeah! :bouncing_off_wall: :laughbounce: :Clap-Hands: :happydance: :Dance: :music_band: :violin:
  22. swilkinson
    On Sunday Ray had what a lot of people describe as a "turn". He called out, when I got into the bedroom he looked like a rag doll, arms outstretched, eyes wild, he looked frightened. When I tried to get him up he had no muscle power. I managed to sit him up, then tried to stand him up as he wanted to go to the bathroom. As I got no help from him and I realised he was a dead weight I eventually sat him on the floor and he flopped back.
     
    By this time I was panicking and so I ran around the house looking for Trev, then remembered he was down the road with friends. I rang his mobile then remembered he lost it last week. Rang our other son to see if he remembered the number of the "old" mobile he would be using. As I was doing that Trev came home . I got him to lift Ray up onto the bed. That is when I realised the bed was soaked through and so was Ray.
     
    We hauled him out to the shower and I cooled him off, cleaned him up, redressed him and got him onto my bed, then when I had it all changed back onto his. Took me half an hour or so to do all of this.
     
    Ray slept for about three hours and then when he got up seemed fine. As this was not like any of the strokes I did not call an ambulance. Taking hm to a hospital on Sunday afternoon would not have been a positive move anyway as weekend staff are often rushed off their feet and the patients don't get to see a specialist etc until the middle of the following week.
     
    I left it till today to take him to our local doctor. He called what Ray had a "brain infarct". He also called it a brain fit. He said Ray has had many of these and the dementia and continuing weakness is the result. There is basically no treatment and the medication he is on is all that he can take right now. I am amazed that I have never witnessed one of these infarcts but apparently they mainly occur during sleep so the result is just a person who is much slower getting dressed, more tired, lacking apetite for a day or so etc.
     
    So maybe for some of you that will explain the lack of progress, those one step forward , two steps back days. On a MRI these tiny infarcts look like white dots so if that is the xray you have that is multiple infarcts. The cause seems to be mostly unknown as yet and therefore untreated. Another one of those things you just rest up after and hope the full strength comes back again.
     
    Ray also has a mild chest infection so I got medication for that. You can hear him coming by the rattling noise...lol.
     
    Apart from that life goes on. It was Trev's birthday yesterday, my "baby" is 33. We took him out last night for dinner. It was not the world's greatest meal, I think the chef was having an off night. Just barely edible. No cake either but he said he didn't want a fuss and will go out with the mates on Friday night. Guess 33 seemed a nothing birthday for him.
     
    It is times like this I realise I am not getting any younger either. Picking Ray off the floor takes me a couple of days to get over now as my back muscles stiffen. I know, get help, call the paramedics, take care of yourself etc.
  23. swilkinson

    taking my own advice

    By swilkinson,

    Ray and I just got back from the three day Camp Breakaway Camp. I had refused this offer while Ray was away in respite. I told myself that I would have already had a good break and he would have too so why would I need another? Well, I couldn't have been more wrong. With the stressful events prior to the funeral, including four days without a phone, the funeral itself and then the somewhat disapponting time at the womens weekend I DID need a break.
     
    I had gotten to breaking point I think, too much expectation, too little delivery can do that. And as a caregiver I really need to be calm and competent to be able to cope with Ray. His return was looming and I was in no way prepared for him to come home. So for once I took my own advice, took the phone in hand and rang them and fortunately as they had had a couple of cancellations Ray and I were slotted in to go.
     
    So the first night we sat side by side as the setting sun hit the she oaks, turning them to gold and watched a local plumber wriggle his hips and impersonate Elvis and the magic of Camp Breakaway started to weave its spell and I began to really relax and enjoy myself. Best thing I could have done. I was able to eat, sleep, stroll around the grounds and the paid and voluntary workers looked after Ray and after me as well. The meals are not first class but adequate, the huts are clean as is the linen, the showers etc. The setting on twenty acres of lawns and walkways and gardens, all overseen by a group of Rotary clubs and a foundation that was set up specifically for Camp Breakaway, are always a pleasant place to be. There were a couple of families of ducks, some baby plovers with their parents, the usual bush and garden birds and NO PRESSURE!
     
    So I do feel refreshed. I am ready to go on, I can cope. At least that is my feeling for today, tomorrow may bring another crisis and the situation will change again. But today I am strong.
     
    There were the usual collection fo frail elderly people, their trip to Camp giving a daughter or a family member a break.There was a man at our table with advanced Parkinson's who was able to stand up but not walk, he was not much older than Ray, too young to be so severely disabled. The person I spent a lot of time with is 98 and an old charmer who had lived in the Riverina and had a lot of interesting stories about life 50 and 60 years ago. He was a delight to talk to and a good distraction from my own worries so we made the most of each other's company.
     
    Ray loves the entertainment, the attention, the laughs the other staff provide. His personal carer has had him for six years now and tells him a series of jokes and stories all through the Camp to keep him smiling. Ray loves that special feeling that being with people who really do care about the aged and frail provides. He was quite frail emotionally in 2001 when he first went and I think part of his survival to this point is due to the many people who have made him feel that to go on living is worthwhile, family friends and people like those at Camp Breakaway. There are a lot of good dedicated people in the world, it is unfortunate that they are not always the ones we encounter.
     
    I am ready to go on for a while. I know the Christmas period brings it's own stresses but I will cope. I just need to take my own advice, take it easy, get some support, look after yourself.
  24. swilkinson

    missing out

    By swilkinson,

    It is so frustrating when it seems like it is never OUR turn to be given a break (literally AND figuratively). I guess it is so true that nothing lasts forever though, good or bad. All we can do is feel each moment of life- cherish the good in it, no matter how frustrating- and remember for better or worse this day will be a memory before we know it.
     
    Thank you to the kind person who send me this email. She never thinks she is wise but her email closing with this paragraph certainly put life back in perspective for me.
     
    Last Thursday Trev and I went north to my daughter's father-in-law's funeral. We had a nice three bedroom unit which we shared with our other son and his family. We stayed two nights so we could settle the kids in and give ourselves some down time as well.
     
    Unfortunately both the little boys aged 16 months and three months had something wrong, one a high temp the other an upset tummy so the first night was full of the cries of small children and low on sleep. I tried to get Alex to sleep, his Dad tried, his Mum tried etc. You've all been there, done that. So Friday there were three tired adults, three tired children.
     
    Our son-in-law did his father's funeral service, it must have been hard for him to do, I don't know how he managed to get through it but he did. And did a fine job. It must be so hard to do the service knowing it is your much loved father in the coffin, not some distant relative or friend. I did the eulogy for my Dad and remember how that felt. We went to the funeral tea afterwards, it was that mixture of sadness and false laughter, when people are trying to bring back to normal a day that is still madly out-of-control for the family at least.
     
    At dinner that night I ate something that made me feel very bad the following day. Trev drove home, and I made it to the promised massage at at the women's weekend at 2pm only to find the masseuses had left early! So no massage. Instead I listened to all the others talk about their massage and how much they enjoyed it! But I guess in a way my running back and forth to my room would have taken the pleasure out of it anyway.
     
    Last year I had a ball at the womens weekend away, this year I was just not in the mood. They said how much fun Friday night had been - I felt left out. I felt as if in making one choice - the funeral - I had destroyed my share of happiness in the weekend. I guess we have all done that, had something we had thought would be so good turn sour.
     
    The paragraph I copied from Kristen's email applies here. Nothing is all bad. The weekend was not a success because of my feelings left over from the funeral but my room mate with her "can do" attitude was a great reassurance to me of the strength of women. I did have some time to chat to some of the others and I am sure that will allow me to talk to them on a more serious way in the future. We are all in pain, caregivers and survivors alike, and we are much stronger when we call up the strength of others to help us.
     
    On the Thursday and Friday I enjoyed seeing my grand children again and seeing Naomi getting acquainted with Oliver and the older two resuming their kinship. I found out how much my son-in-law's mother and brother appreciated that we had come as a family to be with them in their grief. I got to swim in a nice pool at the units and early Friday morning Tori and I walked up and down a small beach finding shells, watching the platoons of joggers (seemed like hundreds of them) and catching a glimpse of marine life in the rock pools.
     
    Kristen is right - nothing lasts forever good or bad. And we have to make the most of each day, as much as we feel able to at any rate.
  25. swilkinson

    life's little bumps

    By swilkinson,

    Just got back on the air again. No, it wasn't my computer this time, it was my phone line. Someone dug up the cable and we went off the air for four days. Another of the little bumps on my way to Peaceful Street.
     
    This has been one of those muddled weeks as all my planned working on the house etc went haywire. It is as if some gremlins crept in and re-arranged life again. None of the people I had lined up could do any work for at least another couple of weeks. I guess this is down to the storms we had in June and the continuing clean-up from that. No tradesmen have had to look for work since. My neighbour is still waiting for his front fence to be repaired.
     
    We still have the funeral to go to. My daughter's father-in-law Don, died on Thurday of last week. He had not been to the doctor for almost twelve months, had no history of heart disease ( he was as fit as a mallee bull) and dropped dead of a massive heart attack. His doctor was also away so an autopsy was ordered and that of course delayed everything. The funeral will now be held on Friday 16th at 1pm. We will drive up on Thursday, spent some time with our daughter and her family, then attend the funeral on Friday, stay another night and come home. It is four hours drive north of here.
     
    Unfortunately it overlaps with another event. I took this time to have a break from Ray as I have a women's weekend starting on Friday 16th at 2pm. Yes, 2pm. So I will miss most of it. It was the highlight of last year and I have so been looking forward to it. The women of our stroke suport group get together for three days and have a ball. Now I will miss most of the weekend. I am so upset that these two events clashed. For once I was looking forward to something that would have been a real treat for me.
     
    I feel as if I am making a fuss over nothing here. I...I...I...I know, I am supposed to be the unselfish caregiver, the family stalward, the good citizen, the good friend, the good companion. Somewhere in all of that there is room to build up a mighty head of resentment and at times like this when I see something I want to do slipping out of my grasp I want to sream "WHAT ABOUT ME AND MY PLANS?" It all seems so futile sometimes.
     
    Apart from that I did rout some of the dustbunnies, brought down the cobwebs, re-arranged the furniture into a better position for summer. I didn't clean the paintwork out on the verandah, get a quote for the pergola, rub down the summer furniture. I doubt if any of that will get done between now and Christmas.
     
    BUT I will get to see my Cairns family again, will get to see the little ones playing together. The two grandchildren from Cairns will get to see Oliver who of course was born after they were here in June. The little ones have had to live with the death of their beloved Poppy since last weekend so they should be ready to have some fun with Tori and Alex. I guess Oliver will still be oblivious to it all, he is ony twelve weeks old after all.
     
    Ray was a little sad when I told him that Don had died. But I don't think he is able to hold on to emotions now and soon resumed watching the waitress pouring the teas and coffees and looking around at what the other people were doing. I guess of the two of us his is the more peaceful life.