swilkinson

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Blog Entries posted by swilkinson

  1. swilkinson
    Having time to yourself is a bad idea for me. Because I start to think about all sorts of things. When Ray is here I am too busy to think and so I just live minute-to-minute, day-to-day as all full-time caregivers do. I am including here all who caregive someone who lives with them and sometimes lives close by as a good friend cares for her mum and lives with her husband and runs two households instead of one, that woman NEVER sleeps.
     
    I was talking to a friend on the phone last night and she is running her husband's business for a week while he is away fishing. This is his reward for letting her go to Scotland alone earlier in the year to visit her grandchildren. They couldn't afford for both of them to go so just she went. There are a lot of trade-offs like that in marriage. We were talking about landing in Heathrow and I immediately thought how much I would like to travel but can't "because Ray has had strokes". See? Everything comes back to that , doesn't it? Ray has had strokes so poor me can't do any of the things I want to do!
     
    It is so simple to blame it all on "the stroke". My house is untidy because I look after a person who has had a stroke. My furniture is old because... My health is declining because....My clothes are old and daggy because... Hang on here, where is MY responsibility in all of this? Everyone has 24 hour days and everyone, to a certain extent, governs how they use it. A person caring for a stroke survivor just has to be more careful with their time to allow for some of the other events to take place.
     
    As a full-time caregiver I need to put time management skills into practice. I need to have a look at my life and see where I can take advantage of the time I have to do some of the things I want to do. For instance I complain that I never go to the movies. But since the place that hired the movies in my local shopping centre moved and I have to drive another ten minutes to get movies I don't rent movies either. This is not about the stroke, this is about ME. I could plan that into my shopping trip, pick up movies, do the shopping. Not that hard to do.
     
    And I need to practice trade-offs. I could get the son who drops his daughter off to have a visit with Granma to pick up my fruit and vegs while he is on the way back to pick her up as he drives past the shop I usually use. It is a matter of putting some of the ideas I used to use when I worked outside the home into fixing up some of the wasted experiences here. And like Sarah (space1) maybe I can barter some of the things I have for some of the things I need. I just have to have time to think about it.
     
    I can think this way when I have time to myself but can't think at all when most of my activities are governed by knee-jerk reactions to the current crisis. Mostly I just don't have time to sit down and sort things out. By the end of this week I need to have not a "to do" list but a list of how to do things better.
  2. swilkinson

    ...bounce...hello...

    By swilkinson,

    Anyone who is a Granma will recognise this saying. It is the greeting of a two year old very early in the morning. I have just had four days down with my Sydney family and enjoyed it immensely. You may remember how scared I was the first time I went down there? Now it is soooo easy. Just a bus and two trains and there are two hills to walk up and there I am. It is still a little steep dragging my suitcase on wheels but I can do it.
     
    The Sydney family is still adapting to the news that they are going to Cairns. It was what we mostly talked about. They both have one more subject to complete an assignment in and one written exam and then they will have completed a Diploma in Ministry and be ready to go out as Sallies or Salvos as they are called in some countries. The first weekend in December they will be dedicated to a life of service as officers in the Salvation Army and in January off they go. Their first Corps (church) and a large one at that.
     
    How do I feel about all this? Just a little anxious. It is a long way away, the kids are small and Naomi in particular will be growing up without our input. But I know that is the case for so many grandparents in our mobility-crazed world. And so it will give me one more thing in common with a good percentage of the human race. And that is probably a good thing.
     
    I went this afternoon to see Ray in respite and Mum in her Dementia Lodge. Ray was out to impress me with how well he is coping on his own and had quite a lot to say ( though he did repeat quite a lot of it). He didn't seem to be missing me at all, smiled at the stories I told him about the grandkids and then shooed me out when he thought it was close to tea time (5pm) and he wanted to be there in plenty of time. Well it is just across the corridor but people were already beginning to collect. In those places meals are the natural highlights of the day. He has been on a couple of bus trips with morning tea and enjoyed both of them. He does love to go out in the mornings so it is good he is still able to do so.
     
    I went over to the Dementia Lodge and sat with Mum as she had her meal which was fish and chips (fries) and vegetables, she polished off that, a dish of creamed rice and the glass of water for her meds to be taken with. She made some faces that so reminded me of the two year old I had just been visiting that I know that her genes live on in her great grand daughter. I even got some smiles and a couple of giggles, she looked clean and tidy and was wearing one of last years summer dresses so I was happy with her care.
     
    I am gong to ring a few girlfriends and see if I can get together with some this week, I have a few friends who are widows or divorced women and don't really want to go out with Ray and me but are quite happy to meet up with just me. And I do have to accept that for some that is just how it is. It is what I did on one of my previous three day breaks and I enjoyed it so it is an experience worth repeating. But I am also going to start sorting the house out too. It does need a spring clean and I know that once I sort the jumble out I will feel it is easier to maintain.
     
    As I left the Sydney family this morning my son-in-law told me how much they had enjoyed having me stay and how he thought I looked much more relaxed after the time off. He is right, I do feel much more relaxed too. As long as nothing comes along to spoil that feeling I will feel like a two year old before you know it.
     
    ...bounce...hello...
  3. swilkinson

    changing times

    By swilkinson,

    I have been up since 6am, that would have been 5am yesterday. I got up early because I was afraid if I stayed in bed I would go back to sleep. Church time was changed too, back half an hour to 9am as there was a farewell for a retired minister who has been helping out, mainly with elder care, visiting nursing homes and retirement villages of which we have several in our parish. I know he will be missed as all ministers bring a different flavour to the service.
     
    Ray and I stayed on to the lunch, which was separated from morning tea by an hour of chatting, a lovely chance to catch up with people we have not been able to say much more to than good morning. Those who have read a lot of my blogs know how much angst I went through prior to the closing of our old church and yes, as predicted I am starting to feel more at home at the present one. Like stroke recovery it doesn't come all at once, you have to recognise what you have lost and work on improving the situation and then move on. I think I am getting towards the moving on point now as I felt for the first time when we went in to lunch:"I must talk to "X" and "Y", rather than looking around to see if anyone was coming over to talk to me. I am not saying I feel at home there yet, just that it no longer seems a strange place.
     
    I also told a few people Ray was going in to respite to give me a break. Some people did look at me strangely after all Ray is a pleasant younger looking invalid with a cheerful manner and "how much trouble can it be to look after him?" Those who live with someone with multiple disabilities and some dementia can answer that I know. But without a break the stress levels would build up even higher and the resentment close to the surface at times might just cause an emotional earthquake that would take a toll on our relationship I would regret later. Let's say an ounce of prevention is worth a pound of cure.
     
    On Friday I paid for Ray's respite and also went for Mum's annual assessment interview. She doesn't have to attend it now as I am both her power of attorney and official next of kin. My sister and I are co-heirs but my sister has visited the Dementia Lodge once since my Mum has been there. And that was because I insisted so she wouldn't later suggest she should have been some place else.
     
    One of the things discussed was her falls and they said that I needed to sign a Risk Management Consent form if I wished her to stay at her present level of care. So I did. I know this is to save them making the decision but I want her to enjoy the benefits of being there in what are now very familiar surroundings for as long as she is aware of where she is. I know the shift to the other side of the road to the nursing home will come eventually but for up till Christmas at least would like her to stay where she is. After all she is on minimum medication and while requiring a high level of supervision does not need a high level of care.
     
    With my daughter and her family also packing up now to make the move to Queensland, my daughter-in-law anticipating her return to work at the end of February and the move for Ray to go into respite for the first time it seems as if much more than the times are changing now.
     
    BTW by the time you all put your clocks forward I will be 16 hours ahead of the time in New York.
  4. swilkinson

    paper wars

    By swilkinson,

    I have just found a new reason to vent. Ray is in his 65th year, that is he will turn 65 in September 2007. So I am starting on all those preparatory steps towards him turning from a disability pensioner to an old aged pensioner. This is a mine field as if I don't claim all he is entitled to we may have an impoverished old age.
     
    We took out all our insurances etc was when we had our first house, a young family and looked at insurance as funding our old age and providing for all those things we would need including a change of housing from family home to retirement home. We planned trips - those nebulous dream holidays we all conjured up as the culmination of our working life and maybe giving our kids some money as a present for help them through middle age as we had once thought our parents might do for us. Well none of that happened. Instead Ray had strokes and we retired in 1999.
     
    None the less we still have to go through the retirement process. We face difficulties our financial planning did not account for. The pensionable age for women rose from 60 to 64/5 so we had planned that I would be a pensioner in June 2007, Ray in September 2007. That is not going to happen either. But already I am getting all the paperwork as our little amounts of insurance/super etc start to mature. And all told it is not going to buy us a hatful of donuts.
     
    I wondered why I suddenly have become shaky and unsure of life and I think it is the sudden realisation that another dream has been shattered. That from the moment Ray had the strokes and we both had to retire, life as we knew it changed not only then but all our future changed too. So now we are still feeling the tremors from that earthquake. And facing an old age that has changed dramatically is a challenge still with us. I know we are luckier than some of our contemporaries who opted to take the money and run, they have no extras at 65 but ours are not the benefit we planned either.
     
    I think this is another form of denial I have been guilty of, that we will achieve in retirement all we had planned. Oh no we won't. It is no good pretending that everything will come out right in the end, that we will all live happily ever after, that the dreams we once had are still a possibility. (For those of you that have it so much harder I apologise in advance as you murmur :"she should be in MY shoes"). It is hard to face this new set of facts that $1000 here and there is not a nest egg, it is a drop in the ocean in the face of spiralling inflation. But we have our home, our family, our time together and I am grateful for that.
     
    BTW the insurance agent that made an appointment to see us and straighten some of this out for us did not appear at 4pm. Anyone surprised? Instead I received a phone call from an assessor in their Sydney offices promising to send me a sheaf of forms to fill in my "claim". The paper wars continue.
  5. swilkinson

    gunna and dunnit

    By swilkinson,

    In Oz we call a guy who keeps saying he will do something and doesn't "Gunna" as a nickname.
     
    A friend passed me a joke recently: "There once were two brothers. The father called them together and asked what plans they had for the future. The older son was quiet for the moment. The younger son said: "Gunna plant wheat in that top paddock Pa." the older brother said: "Dunnit." The younger brother said: "Gunna put an order in for the new tractor Pa." the older brother said:"Dunnit." The younger brother said: "Gunna start a family. The wife and I talked about it last night." The older brother just smiled and smiled."
     
    Today we had a new lawn mowing man come. Our old one had done our lawn for seven years and had to cut back on his business due to family problems. It seems his son-in-law had a gambling addiction and now they are trying to re-mortgage their daughter's home and look after her children for her as she has to work to keep the home. Life is tough sometimes and it has unexpected twists and turns that you never saw coming. Stroke is not the only life changing experience.
     
    We have had another pretty good week. There were some days when Ray seemed slower. I am a bit worried about the dementia as the tablet he has been on may have the same problem as others and only work to its optimum for six months and it is coming up to that time now. I noticed he wanders out to the verandah as soon as he has had breakfast, doesn't go out to the kitchen and do the washing up unless I remind him. He also seem to stare into space more. We don't see the neuro again until December so I might mention it to our local doctor as we have to see him sometime this week.
     
    We had a good weekend. On Saturday night we went to a birthday party. My sister has 19 in her family now counting herself and husband, four children, their spouses and grandchildren. They have a "birthdays of the month" party and the family with three out of the four birthdays, her second son's family hosted this month's party so we were invited too. Trev, our younger son drove us up there, the other son Steve, wife Pamela and two children joined us so there were a heap of cousins and second cousins all enjoying each others' company. Ray and I enjoyed it too. We provided some of the food and four token birthday presents and had a lovely evening. Then on Sunday we had an old friend come for lunch and go home at 8pm after stopping on for dinner. It is rare that happens but it was good.
     
    I met some friends for coffee today while Ray was at Daycare and they spent all the time talking about funerals - aaarrggh! that was the last topic of conversation I would have chosen but then we are all at that age where we are not only burying uncles, aunts, parents and their contemporaries but also the first from our age group as well. The husband of an acquaintance dropped dead outside the Kremlin whilst they were on holidays! Imagine the red tape involved in bringing that body home to be buried. Made an interesting story anyway and one people will remember for a long time.
     
    Mum used to say: "Creaking doors get the most attention" I wonder if our dear ones who we look after get too much attention sometimes. A couple of my friends have recently been away on holidays overseas without their spouses and yet I am getting anxious because I am putting Ray into respite for a couple of weeks so I can straighten out a few problems and get some much needed time off. I think if he was well I would think it quite normal to take time off myself but since he has been ill I have never felt right about doing things on my own. I need to have a look at that attitude and see if I can work out why I feel like that. It isn't the way my friends see it. They think I should take time out for myself, don't see that as selfish or neglective, just normal for this time of our lives.
     
    I will have two weeks off starting on Monday 30th. The first week I will spend with my Sydney family. Then I will come home for a weekend, have a few days of house/spring cleaning and look at some of the things that need doing and hopefully get some quotes. There is painting the end of the house where the paint is cracking, replacing the wardrobes in the bedroom with something more suited to our present needs, maybe even going into the twin beds I have been talking about for so long. Without Ray home I can jump in and out of the car and race around getting this done in half the time. Why do I feel so guilty about it?
     
    Hopefully there will be some changes for the better in our domestic arrangements. Wish me well and if you don't see me online for a while it just means I am busy sorting life out. Soon I may turn some of the items on my "gunna" list into "dunnit".
  6. swilkinson

    mixed messages again

    By swilkinson,

    I had two phone calls tonight. To each of the callers I made the statement :"Ray has had five strokes so he needs me to answer for him." In the first instance I got a very terse reply and the caller hung up. As this one was from our life insurance company and was supposed to give me a run-down on options for the cashing in of one of Ray's policies she is going to have me complain to her supervisor tomorrow.
     
    I am sick of explaining that Ray had had five strokes so therefore he can't - understand long sentences, speak on the phone like he used to, consider complicated options, write them a letter giving me permission to talk on his behalf, think fast enough to answer their stupid questions. I want to yell down the phone line: "WHO ARE YOU? ARE YOU STUPID OR SOMETHING? WHAT DON'T YOU UNDERSTAND ABOUT WHAT I AM TELLING YOU?"
     
    The second phone call was from one of those "Free Holiday in our Timeshare Units" people. For $109 you got the right to spend five nights in their accommodation but only one night per unit etc. I tried explaining to the lady that our needs were specific as Ray can't walk far, needs a special shower, cannot eat restaurant food, etc. I don't know why I tried to explain when it would have been easier to simply hang up.
     
    Both these episodes left me shaken. Maybe the effort of keeping life in focus is proving too much again. It sometimes seems so hard to just have to do the simple everyday transactions that keep life going. I wish I was a business woman and had that kind of brain, so I could make complicated financial decisions and come out with the best possible solution, but I can't. And ironically the nice man who used to be our financial advisor and set me up with Ray's annuity etc died earlier this year of a heart attack in his early fifties. Too bad, loss of another good man.
     
    I wonder why I feel so really helpless in the face of so many financial decisions? I am possibly feeling anxious at the moment as the time to put Ray into respite is approaching and I have no real plans as to what I am going to do with the time. I would like to visit my daughter, have a mini break somewhere nice and then spend a few days tidying up the house. I would also like to sleep for a fortnight in a nice room by the side of the ocean on a tropical island in a hugely expensive burro. I think that is what one of those thatched huts are called that you see in places where Madonna or Tom Cruise once used to holiday with their family/significant other. If it is good enough for them, it is good enough for me.
     
    So tomorrow morning I will ring the insurance company, ask to speak to a supervisor, complain about *D* the girl who rang me tonight and ask her is it possible to talk this over with someone face to face, and no, I am not going to pay a large fee to talk it over with a financial advisor, thank you very much. Wish me luck.
  7. swilkinson
    Our grandson Christopher came for four days and we had lots of fun, three visits to local beaches, a cousins day with Tori , a visit to a local hospital fete, and today a visit from his Mum and Dad and sister, who came this afternoon to take him home.
     
    I must admit although it was very fun and very stimulating at my age and with my other commitments it was rather tiring too. With someone else besides Ray and Trev in the house I was super aware of the dangers such as medication left lying around and concerned with healthy meals etc and that all kept me very busy. While Christopher isn't demanding he is a child and does have an opportunistic approach to life. He knows that he can try out behaviour at Granma's that is already banned at home and he is both child-like(innocent, amusing, loving etc) and childish ( wanting his own way, demanding, and sulky when tired.)
     
    I noticed he and Uncle got together and ganged up on Granma and with Uncle around most of the weekend this became a little tiresome. When I had Christopher through the week before he went to school it was mostly Granma and Pa here and so we had a quiet routine with occassional bursts of merriment. But Uncle does have a more boisterous way of playing etc and so more damage etc happened. I know they both loved the rough and tumble and so it was okay but a third party does make a difference to relationships.
     
    We crammed as much into each day as we could and had hot weather so the trips to the beach were most enjoyable. Yesterday was very tiring with Tori here as well so we visited a water park which is a feature of one of our outdoor malls and they had lots of fun there. It is good to see the two little cousins interact , they get on really well together. And we had Tori's parents and little brother join us for a fish and chip dinner which extended the pleasure of the day and was a late celebration of our son Steve's birthday which was on the 13th.
     
    Today it was hard to say good-bye to Christopher, he is so very deep in our hearts and now we know that he and our daughter, her husband and other grand daughter are off to Cairns, 1700 miles from here in northern Queensland, to live in January the time we spend together is enormously important to us. And so of course the two hours they were all here passed swiftly as they talked of all their plans, their move, their new hopes and fears for the future etc.
     
    I wonder did they notice that Ray and I were quieter than usual? Because I remember that a year before Ray's step-Dad's death from cancer and less than two years before his Mum's death ( another caregiver who died within twelve months of the person she was caring for dying) we moved too, and I guess we were full of all the promises of our future and maybe downplayed their sorrow as they realised they would see less of their grandchildren. And that did prove to be the case too.
     
    I guess what comes around does go around, and here we are with those same regrets now.
  8. swilkinson

    not so good news day

    By swilkinson,

    Well what a day it has been. I don't know why I can't just order a peaceful day. I have some exciting, annoying, difficult to swallow news and I am not allowed to talk about it for a couple of days. It is about where my Sydney family is being posted to and it is just so far away it might as well be the other side of the planet. For them it a wonderful move. If I was their age it would be for me.I would just be so pleased.
     
    They are going up north to a small city. It is warm, it is scenic, it is a sought after destination. It is a bright town with a lot of potential and I am sure they will settle right in. But it is so far away. Of course if we could just board a plane no worries but we can't. Since the 1999 strokes Ray is not allowed to fly because he has a narrowed artery in the brain. It is something to do with the pressure. So it is a land journey measured in days. And with his many conditions that is a major undertaking.
     
    I am just trying to adjust to the news. I don't want to rain on their parade. It just feels like losing someone you love, they will be too far away to be a part of our everyday life and we theirs. Naomi will grow up not really knowing which of the Nanny/Poppy, Granma/Pa combinations is on the phone. We will fade in their memories. We will have two or three years without watching the grandchildren grow up. Just thinking about it is tearing me up.
     
    I guess this is how my parents felt when we announced that we were going to live firstly five hours drive away and three years later ten hours drive away when Ray was transferred with his job. I guess for my Mum who was used to me living just up the road it was as devastating as it feels for me now. We, of course, were able to come back here every two months or so to see our old folks. Our kids won't be able to as running a Salvation Army Corps is a real big commitment, we will just see them a couple of times a year. I know, it is not all about me.
     
    Things have been going well for a few weeks and I was just starting to build up some confidence in the future again. But Ray had two "accidents" two days in a row. We just seem to get things sorted out and something else happens. Well I cope, but it does not make for a happy day. And he gets that hang dog look when I get out of sorts and nag him.
     
    Next blog will be bright and breezy and full of the joys of Spring. Promise.
  9. swilkinson

    WAGS meeting again

    By swilkinson,

    Ray and I went to WAGS today, to a big room where the sound echoed. But the air conditioning was spot on and the circle of tables held 48 people, all of whom seemed glad to be there. This was only my third meeting so I am still struggling to fit names to faces, carers to survivors etc. But Ray is greeted by the Scallywags menfolk with waves and smiles and the cry:"Ho, Ray." And his smile is a mile wide.
     
    We had a break to wait for a guest speaker who didn't turn up so we got some chatting time in. A couple of women came over and said "hi" so that was nice. We helped ourselves to tea, coffee etc. The second half of the meeting was a lot of reports. I will tell you a few of them that struck me as just the type of thing I would have wanted when Ray first had his strokes.
     
    The WAGS group has formed a Mentoring group where patients at the local hospital who have had strokes will be able to be paired up with a "buddy" if they so wish. The mentors (ten of them) have done a lot of training and are just about to be assessed before gaining access to patients. Even if the stroke survivor doesn't want to join the program a survivor and a caregiver will go to see them before they leave hospital. There will be an opportunity to pass on information, answer questions and maybe draw them into our group or refer them on to another support group, which should be a great help for first-timers lost in Strokeworld.
     
    The other report was from a group who had been to a National Symposium on Stroke Awareness in Canberra, our capital city. They were pleased with the amount of information they had gained and also that one of our members had been a speaker talking about how WAGS had been set up, how it is funded and how it has impacted on the lives of the members both caregivers and survivors alike. They felt that their imput had been heard and valued.
     
    I am going to their Women's weekend in November, it has a minimal fee, mostly sponsored from group funds, will have two formal dinners and two guest speakers in the mornings with the afternoons free. This is being held only about twenty minutes away from where I live but it falls in the period when I have Ray booked into a fortnight's respite so I will not have a worry about him and will be able to concentrate on learning more about my fellow caregivers and maybe find out their coping skills. I am looking forward to that. I am pleased I was able to book that time off for me. I am getting used to the idea now that Ray and I will have separate breaks. It is an option others have used for some time out and I need to feel it is just that, a break from full-time caring to make me a better caregiver.
     
    This time we also stopped and had lunch with some of the group. And the service was atrocious. The meal booked for 12.45 came at 1.45! By then some of the more irate survivors were showing the irritation that is a bit beyond socially acceptable in some cases, with their caregivers trying to hush them up and calm them down. But the food was well prepared when it came and the time gave me an opportunity to find out a bit about my neighbours at table which was informative. Ray and I had the same meal and both enjoyed it. Some of the others complained about the meal but that was probably because they build up a head of steam while waiting, or maybe it was the second glass of liquor.
     
    There are a lot of diverse deficits in the group, we sat opposite a man with Aphasia who shoots out single words with a three word sentence capacity. But he is one of Ray's new friends and was happy to sit near us. The(survivor) co-president (all positions are shared) was telling me she returned to her old job after a years' break and is still working 19 hours a week only after five years due to fatigue issues but her boss is just happy to have her back. As she works in a government department that works with people with disabilities he now views her as a consultant as well as a worker. She seems to be a really nice person and I am looking forward to getting to know her more. My neighbour on the other side also a survivor has had to overcome language difficulties but turned out to have quite a witty turn of phrase and I will get to know her more at the weekend too.
     
    Support groups are all different, just as we are all different. I came here because I didn't have a support group locally I could relate to. Now I have. But I will still be here anyway. Because there are all kinds of support and it is a blessing to give support as well as to receive it.
  10. swilkinson

    laying on sand

    By swilkinson,

    I took Ray to see the dietician this morning. Our appointment was rebooked from 12.30pm to 9am so I asked Bonnie to look after the start of Tuesday night Caregiver Chat for me, and that was just as well as the dietician was 20 minutes late starting the appointment. After an hour she concluded there is not a lot she can help us with. I think our diet is pretty spot on apart from Ray having secret caches of sugary food somewhere or overindulging at craft afternoon teas. I was brought up to English cooking, meat and three veg, and have added stir fries, pasta and a few other dishes to my repertoire and I think we eat a well balanced diet. We mostly eat the 2 fruit, 5 veg that seems to be the symbol of good eating now.
     
    While Ray was having a nap this afternoon I went down to the beach. Trev was home so able to keep an eye on Ray for me as he can sit here at the computer and do that. I walked the long way to the beach and went down onto the sand and sat for a while. That used to be a Sunday afternoon thing once for the kids and me, we would walk to the beach, they would body surf and I would pick up shells or walk to the rock platform or walk around in the shallows on the edge of the water. Ray has never been a great lover of the beach although he does like to go half a dozen times a year for picnics or just to enjoy watching the kids and now the grandkids splash around.
     
    I am trying to plan ahead just a little now. I guess that must mean Ray's health is stabilizing so I am hopeful of some good times ahead. In the bad times I just live life day to day and don't make any plans. All I am doing now is thinking how summer might be. Maybe a few picnics and BBQs and if Ray keeps well an invitation to some of our friends to join us, that kind of thing. We have a couple of lakes close by too and a picnic lunch by a lake where there are swings for the littlies to play on is a good way to spend a Sunday afternoon in late spring and early summer. By Christmas it is getting too hot unless there is plenty of shade for young and old to keep out of the sun.
     
    When I was a kid I was fascinated by the underwater adventures of Jacque Cousteau and the early surfing movies. I like the sea, I like the sound it makes and the feel of it on my skin on a hot day. I am aware now of issues like sun cancers and probably don't stay on the beach for as long as I used to but to be on, by or in the water is still a thrill for me. I watched the white bodies of the young teens enjoying school holidays and playing at the edge of the sea but wasn't tempted to try it myself, too cold in the water as yet. I will start to swim about mid November, then just occassionally in the late afternoon.
     
    I laid on the beach and looked at the sky, with our dry weather the sky is an incredible blue now. There was the sound of the waves, the squeals of the young girls but nothing much else to hear, nothing to see and nothing to do. A space in my day like that is an incredible gift. There is a lot of small tasks to do here all the time and it is good sometimes to choose not to do them and to give myself a break.
     
    I used to wonder as a child why when you lay on the sand you can't hear what is going on under the ground, like worms wiggling or those fires you see on movies like "Journey to the Centre of the Earth" burning away. I guess that is a part of what I was doing today as I lay on the beach. Listening to the sounds of nothing happening. That is a good thing to do sometimes.
  11. swilkinson

    marking time

    By swilkinson,

    I just read Heather's entry about not getting anxious for one day. I remember I felt that in the first twelve months after Ray's strokes. I felt as if I lost control every time even the most minor event happened, an appointment changed, a delay of some kind. Visits from therapists could send a ripple through the day. Their advice seemed to dominate our life, changing it forever. It is not like that now.
     
    I had a reply from Sherri that said she has accepted the new norm ( or words to that effect) and she is only twelve months out from the stroke. I think Ray was like that too. Once he knew he wasn't going back to work, he wasn't going to drive and he wasn't going to get much better he just settled down with his Reader's Digest books on the front verandah and that was it. That wasn't a giving up so much as a giving in, and sometimes I see acceptance as just that, a giving in to the situation. I know I will get some argument from others on that one but that is how I see it.
     
    My Mum used to do what Dad called "niggling away at it" with a problem. It was as though she was viewing it from as many angles as she could. Maybe this was a contributor to the series of ulcers she had too. She could never let anything rest. She had to know what it was about right to the minutae of detail. So I try to limit my worry time. Which means that if I lay awake too long I get out of bed and do something else to move my mind onto another track.
     
    This is a long weekend, the Labor Day weekend and last night was noisy with some neighbourhood parties. It was also League (football) Grand Final night so there were male bonding get-togethers too. Trev was busy with his mates so Ray and I watched the match together. I thought it was pretty good, the teams were evenly matched , the game was fast, there were no major infringements of the rules. The better team on the night won the game. Pity the other guys don't get a rematch next week but that it life. When Trev came home he pointed out that the right team hadn't won, the referees had made many mistakes and so there ought to be enquiries etc. I didn't even notice, too busy watching the game.
     
    So maybe I do have acceptance. The kind that doesn't look for trouble, that accepts life day-by-day. That sort of acceptance let's you go on with life without stopping too long on one spot and agonizing, or over-analysing, like Mum did with her ulcer inducing niggling away at a problem. There must be a lot of different ways of accepting the post-stroke life. And mine is to just work on it one day at a time.
     
    But doesn't that seem like marking time? Well, yes it does have some disadvantages. It does put forward planning on hold, it does deny that there will be great improvement and it does make life seem dull sometimes. For me the future ahead, brighter and happier as I saw it, did give me a lot of hope. The Bible says wisely: "Don't live as people without hope." But that is a harder one when life is without a bright future.
     
    My hope is now woven into the routine of our days. It is the little things that brighten the day now, a phone call from a friend, a bargain at the shops, even a cup of coffee out in the sun. I can see now the point in all those old movies where the two old people sat and watched life go by. It was a form of finding contentment in the day-to-day progress of life. That is probably that is where I am today.
  12. swilkinson

    kinds of support

    By swilkinson,

    It has been a busy day in a busy week for me. I went to three different types of support group today. In the morning I went to a meeting of carers, in the afternoon Ray and I went to a funeral and tonight Ray and I went to a dinner meeting we have been going to on and off, once a month, for about 22 years.
     
    The support group I went to this morning was rather odd. At first there were only five people there plus two social workers. Then two more people came half way through the meeting. I had been lead to believe the meeting was for carers of stroke survivors, but it turned out three of us were in that catergory, two women had husbands with Parkinsons, one a daughter with a serious TBI and the last a son who had a disease which affected the top of his spine and may affect the cerebellum. What we had in common was that we all looked after someone and were all women.
     
    I asked one of the social workers how many people had been invited to attend and she said they had sent out 120 letters! If 120 letters were sent out and only seven people were able to attend it does tell you something about caregivers, they are mostly too busy to attend meetings! And this was with some respite being provided for the person cared for. I had asked Trevor to look after Ray as I was not sure how long the meeting would go for.
     
    The program was less than promising, a lady from Carelinks, a government funded group which should co-ordinate care needs took us through some of the services they may or may not provide according to how many of them are currently being funded. I had a couple of things to say about my struggles with getting my respite needs met and she agreed mine is probably not an uncommon case. The rest of the group looked very glum but said nothing. Then we went on to have lunch together at our own expense and at a small but very noisy restaurant so in the end we gave up on conversation and ate our lunches in silence. Not a very promising beginning.
     
    At the funeral this afternoon I read the eulogy on behalf of the family. I have done this a few times as you just need good diction, a steady voice and the ability to read. This one was typed so I had no trouble with it. You learn a lot when you have even the briefest look at someone else's life, this couple, known to us for 20 plus years I knew had one son, I didn't know they had also lost two children, a four year old daughter who drowned and a son in his teens killed in a car accident.
     
    Ray and I thought we went to support them but in the end gained as much as we gave. Our son supervised the funeral on behalf of the firm of funeral directors he works for so was very conscientious in attendance to the family concerned. We did go on to the funeral tea and had a lovely afternoon with a lot of our friends from our old church. It was with a shock after a couple of hours I realised we only had an hour to go home, redress and go out to dinner.
     
    The dinner tonight was a monthly dinner. The reason I call it a support dinner is because every dinner, during the after dinner interval at least a couple of people come and sit with me and discuss their family woes. This stems from the time when I did hospital chaplaincy and they encountered me in that role. So each month I do some counselling as people discuss their old parents care needs, confess in whispers their childrens drug problems, or ask for prayers for family and friends in need. I don't mind doing this. It is part of what I am as a member of that group, most groups need a chaplain.
     
    I always think of what a wise man once told me:"The Dead Sea is dead because it receives and never gives out." As caregivers we do need a lot of support, but we also need to pass that support on to others, not only in our own family group, but here and in other situations we find ourself in. You might not think of yourself as wise but as the song "I am Woman" says: "Yes, I am wise, but it's wisdom born of pain." As survivors and caregivers alike we have a lot of that kind of wisdom.
  13. swilkinson

    disappointing changes

    By swilkinson,

    I am finding some disappointments in life in my forward planning. Because forward planning has always been one of the joys of my life. I was the kind of person who had goals, who looked ahead to well-planned holidays with all the right clothes packed. Who could tell you the date of Easter and all the long weekends in the year and what I hoped to do on any of them.
     
    All my childhood I looked forward to weekends, those wonderful two days with no school, when the world was open to do whatever you wanted to do. Right? Wrong. I lived in the days of chores and being the elder of two daughters had plenty to keep me occupied Saturday mornings and church on Sunday mornings. So that left Saturday afternoons and Sunday afternoons. Right? Wrong. Sometimes my parents had plans for that time too. And I had a younger sister so was supposed to look after her as well.
     
    But I did have some spare time, nothing like kids do today, and I walked to friends places, read, rode my bike,watched other people play tennis, sometimes just hung around. That was until my parents bought a small mixed business when I was aged eleven and had me as the assistant and then I only got Sunday afternoons off. When was fifteen we sold the shop and moved but then I was old enough to work in other people's shops. I guess you get the picture.
     
    When I went out to work I did get those magical weekends and they got filled with a lot of things I am not going to disclose here. But I did have some fun, did learn a lot about life and did plan ahead some. Then I got married and planning had to do with what Ray wanted to do, then where the kids fitted in etc. Then for just a few years we had those wonderful middle aged years when we had finally raised the kids who had gone off to make their own way in the world. Then we did go away for a few weekends, had some holidays including two overseas holidays, some further education for both of us and a lot of fun.
     
    Don't get me wrong, there had been some good times since Ray had his first stroke in 1990. We still had a fifteen year old but he was mostly raised so I went back and got some more certificates in administration and went out to work again. Ray was considerably slowed down but he went back to work after six months. I worked, he still worked and we still managed to do some extra things we wanted to do, like walk the nine miles around the base of Ayres Rock, we didn't climb it as the Aborigines who are the custodians ask you not to, and respecting their rights, we didn't. And maybe I accepted the changes as being part of middle age, a sort of natural slowing down of life.
     
    But then in 1999 Ray had the two major strokes and life changed and never changed back. Even since the major strokes some good things have happened to us, the coach tours we have enjoyed, the family gatherings, the birth of our four grandchildren among them. But then came the other two strokes and little by little because of his deteriorating health I have had to do more for Ray as he has been less able to do things for himself. My ability to plan forward no longer exists past the end of next week and even that could be a problem.
     
    Tonight I had to tell my daughter I couldn't have her children for a week of the school holidays. That is, in two weeks time. I would love to, this time last year I would have been able to but tonight I said I couldn't. I can't have a six year old and a two year old and Ray to look after for a week. It is a bitter pill to swallow. I would love to do it but I can't do it. I can't describe how that made me feel. Desperately disappointed is close, but so , so sad also. I love being a Granma and love having the kids here. But with Ray's failing health even thinking in terms of a week is sometimes too much.
     
    I guess I will have to leave the future to God. Maybe He can see it in a brighter light. That I myself can not see right this minute.
  14. swilkinson

    how lucky?

    By swilkinson,

    I enjoyed chat this morning, Wednesday for me,Tuesday night your time. It was good that there were a mixture of survivors and caregivers that came along. We are here to help each other. The caregivers can tell the story from their side, the hardships of changed finances, the burden of constant care, the great feeling that your survivor is just that a SURVIVOR and you can be happy he/she is still with you. The survivors help the caregivers to round out the picture, what if feels like to be a survivor, the frustrations, the difficulties, the struggle with OT,PT, the affect of many medications on the body. It is good to get an insight into what goes on each day for them too. Of course it isn't storytelling, more like a hint here and there so you may have to go to many chats to fill out the picture.
     
    Thanks for all who come into chats prepared to share. Chat is not somewhere where it is all grim either. You should be on some Fridays nights when we are all a little crazy and the fun is on. That is good too because most of us miss out on that relax after work that heralded the weekend. And if you are not a good typist and have trouble following the flow it doesn't matter. In any party there is someone who is a bit quiet for some reason and if you can encourage them to type a few remarks in , good for you.
     
    While I was in chat Steve Irwin's memorial was on too so I missed that. I know that Bessy and Cindy were watching as they made comments about it. Luckily I can go to one of our news sites and saw most of it in video replays and not doubt it will all be on the news tonight. Steve Irwin was a one-off but I've known a lot of blokes like him in the country - enthusiastic, in-your-face, a little too loud maybe but good at what they do. As Aussies say:"True Blue". They are what Australia was built on, before the investment brokers and the politicians and those who value the "bottom line" and not what it is for took over.
     
    And I thought how lucky I am to live in Australia, a somewhat classless society, where we still help the under-dog, the battler, the "poor souls". I hope it stays that way and people aren't judged by what they have, or how much they make, or how many of our resources they use up, but how much they contribute to our general well-being, how they bring up their kids and how much time they are willing to donate to help their communities be good places to live in. To help your mate is still a value to hold on to and I am proud to be an Aussie.
     
    Ray and I have had a good week, we had a couple of bad ones so it is nice to have this slow-down time. I could do a lot of things this afternoon, there's always plenty of housework , ironing etc to do but maybe I won't today. Maybe I'll take some time today to think about life and how valuable it is, to think about Ray and how glad I am that he has survived those seven years past the major strokes. And to think about all the people I value the most, my family and friends.
     
    Feel free to drop into chat on Tuesday nights. It might be in the Caregiver room but it is chat for everyone. We talk about so many topics, for over two hours today people came and went and the topics changed with the people. And maybe it will take you some time to ask all your questions but eventually you will get some of the answers you are seeking.
     
    Don't sit at home lonely. There is a wonderful life all around us. I think that is what people like Steve Irwin have to show us, the wonders of nature. But look in the background too, all the grasses and trees were there long before he found them, they are there for the rest of us too. Look out your window and even if the sky isn't blue and the sun isn't shining it will be soon. Lucky, aren't we?
  15. swilkinson
    This has been another week of getting used to what will happen when Ray changes over to insulin. I know a few people are dealing with insulin dependent survivors right now and probably wonder what I am making a fuss about. But for me it is a big deal. I know it will be for Ray too but I will be the one testing his sugar and working out the dosage and giving him the insulin. And to me, with no nursing background, it does seem like a big responsibility. So I am finding out as much as I can about how to balance his blood sugar better and make sure that I know just what I am in for.
     
    We went to the doctor again today, that is our fourth time in three weeks. He is trying an experimental drug on Ray that is supposed to boost the effect of the other two diabetic meds he is on. It may take up to four weeks for the effects to show up though and this is only the end of the first fortnight and it has failed to improve it more than single numbers so far. We have to go back again in a fortnight, get a blood test in ten days and go back with the results of that. It seems such a slow and drawn out process but I think the doctor is waiting until he thinks Ray is used to the idea before making changes. He did change one med this week and said he will change another in a fortnight according with what the kidney specialist wanted, but is only willing at this stage to change those two medications.
     
    I made an appointment today to see a dietician as I want to even out the effect of food on Ray's daily cycle. The Low GI diet is pretty well established here and she is going to help me through a process she called partnering where I will decide to put foods in groups to make it easier for me to work on menus. If I know I can serve mashed potatoes as long as I also have sweet potato and sweet corn on the same menu it makes it easier to find a quick meal. I know a lot of diabetics don't eat well and this aggravates their health problems, so I don't want to fall into that trap with Ray.
     
    As a caregiver I find the thought of so much responsibility scary sometimes. It is like being the mother of a new born in some ways. Everything the baby needs the mother provides or supervises. I feel like that with Ray's treatment sometimes, particularly now he has mild dementia and really isn't capable of making decisions on his own behalf. The doctor asks me the questions as Ray cannot always articulate how he feels now, or what he wants to ask the doctor so we discuss it beforehand and I ask the questions so that both Ray and I benefit from the answers.
     
    I just read an article in a church paper called;"Handling the Bad News." The title sounds pretty ominous but we all get bad news from time to time. Most of it starts:"I don't know how to tell you this but...." so the article talked about calling on your own strengths, the support of family and friends and specialised support groups in the face of long term illness like cancer. Of course it went into a lot of religious stuff too but on the whole the answers could have been reprinted anywhere. I find these articles useful as they re-enforce the way I have chosen to handle Ray's long term illness.
     
    I am grateful I found this site. I have made some friends who are in a similar situation to me, caring for husbands over a long period of time. Through this blog and chat I have been offered a lot of advice and support in a way that I couldn't have imagined previously. So now I chat to people in the USA as if I have known them all my life. It is such a bonus especially as it is often at a time when I would hesitate to phone anyone here for companionship or to ask a few questions. And as this is specifically a stroke site it is so easy to ask difficult questions without anyone feeling uncomfortable or embarrassed. Not sure I could discuss Ray's incontinence with our friends in real time!
     
    Of course we also have friends in real time who offer us support as well. Some of them I don't hear from for a while and they suddenly resurface. Ray got a small package in the mail yesterday. I assumed it wa for his birthday but when he opened it up I could see I was wrong. It was a framed photograph, not a particularly good one of Ray and I taken in 1988!! I was quite pretty back then and slimmer too. The sender was a distant cousin of Ray's who said he had found the photo, rung his brother in Queensland to get our address and sent it to us. I rang his brother, got the sender's phone number and he and Ray had a chat and caught up on each others news. It was so nice to have that happen right out of the blue.
     
    So not all our news is bad news. Some of it is pleasant and reminds us of the goodness of life. So it is wise to accept life as it comes, the good and the bad, not anaethetising ourself from the pain but where possible living with the pain and confusion of living in order to taste the joys that come our way. No ups if there are no downs I guess. I am not always good at this but will try to accept life as it comes.
  16. swilkinson

    a new way of being me

    By swilkinson,

    Wow! I was so surprised when I got up this morning and logged on to Strokenet and my log-in was wrong! What is this! I can't log in, oh no! But it wasn't bad news and once I had accessed my messages on Hotmail, there was the reason. I had been accepted as a chat host on Strokenet. So followed instructions, changed my password and became a new person - hostsue.
     
    During my lifetime I have been a lot of things. I started my first voluntary job at 16 as the secretary of Ourimbah Teen Club. We lived at Ourimbah, a little village on the Central Coast inland from where we live now. It had a hall that had been a Nissan Hut . The hall was moved from where it was used somewhere in Sydney for storage after the second World War to Ourimbah to take on it's humble job as School of Arts and the equivalent of town hall. As secretary I was part of an executive that not only ran meetings but dances and fund-raisers too. Our teen club held fortnightly dances, though in the rock and roll era we were still doing swing waltzes and barn dances. But we were happy, meeting our peers socially, raising a little money for charity. The other two Saturdays I danced at other halls including on the Mountain where I met my husband Ray, he could really dance in those days.
     
    I have been employed in several service industries, including the auto industry, in local government, the public service and did a stint as a Tupperware lady. With each job I re-invented myself. There are a lot of facets of our personalities that we stifle in one job and bring out in another. The quiet secretary can become the stand-up comedienne because in selling Tupperware to roomfuls of people humor really helped to put the sales figures up, and if they like you, they ask you back!
     
    I also worked in many community organisations as all the country mothers do, raising money for schools, Scouts, church, Daycare, and other organisations that need a fund-raiser. I held a lot of offices in 25 years, so was sometimes Madam President and sometimes the person rostered on to wash up! A lot of people will identify with me on that one.
     
    When Ray had the strokes I was working part-time in paid work and part-time for the church, usually six days out of seven. Coming home to look after him put me into a whole new catergory - caregiver. I've done that job to the best of my ability for over seven years. I said: "in sickness and in health" as one of my wedding vows and that is it for as long as I am able to manage. With Ray's condition deteriorating mainly due to the diabetes I don't know how long that will be. But as long as I am able.
     
    So as hostsue I will be doing Caregiver chats on Tuesdays nights (when I am available) and acting as a cheerleader and supporter for those who need it, caregiver and survivor alike. I guess the saying is true: "the more things change, the more they stay the same." I am the same person I was yesterday - I just have a new name.
  17. swilkinson

    baby love

    By swilkinson,

    Yesterday I was still in a bad mood. Things had gone from bad to worse. I had tried to brighten up for Ray's birthday. I had decided we would do a few things in the morning including going to the doctor and going out to breakfast. Maybe we should have had the breakfast first! Instead we went to the doctor first, he read all the reports but still did not have the recommendation from the kidney specialist so we have to go again same time next week. He was disappointed when I told him that the kidney specialist had recommended insulin. He doesn't want to go there with Ray if we can help it. And he said if he does decided to alter Ray's tablets it will be one a a time, not all at once. In a way that made me feel we were still in control of the situation. We can take the advice of the specialist but combine it with some common sense.
     
    The breakfast was good except that Ray, like a lot of stroke survivors, sees a large plate of food and promptly loses his appetite. I explained to him that this was the equivalent of breakfast and morning tea, it being ten o'clock by then. He still shook his head so I asked the waitress for a spare plate, cut up half of the breakfast and moved it across to the other plate. I would rather have him eat half of the food provided than balk at eating any of it. I can eat scrambled eggs and as she puts garnish on each plate it was rather like eating scrambled eggs with salad!
     
    I had told the barber that I wanted Ray to have a haircut after the breakfast but when we got back there his room was full and so we couldn't wait. Ray had to be toiletted etc before he went off to Scallywags. I was disappointed as it is hard to fit extras into next week which will include the funeral of an old family friend.
     
    My free time while Ray was away at Scallywags had to include a visit to Mum as she had had another fall, they seem to be coming regularly at a couple a month now. She had a bandage around her head and over her forehead where she had yet another cut but seemed quite cheerful. I stayed with her for over an hour as I had given up other plans to get there.
     
    Ray got home from Scallywags and had another "fecal event". OMG, what a mess. Took me an hour to clean up, get him showered and into bed, I thought that the best place to put him for a while. It is getting harder for me to clean up now, as if it has a cumulative effect. I know it is not his fault etc. But it is still practical problem that we need to overcome. By then Trev was back home and wanted to cook a special meal for Ray's birthday dinner but I persuaded him to just cook some steamed chicken and vegetables, a bland meal to soothe an upset stomach. Wasn't very "special" but didn't stir up any more trouble.
     
    Why have I called this baby love? Well tonight we had Alex and Tori while their Mum and Dad went out to dinner. I wasn't going to do it yesterday, I was feeling too sorry for myself, too hard pressed. But this morning I decided I would do it. Our daughter-in-law doesn't get to go out much without Alex and needs a break too. I remember the first couple of child free nights after having a baby, it is heaven. And it was the right thing to do.
     
    This morning we spent all morning at our church fete. It was cold, blustery and wet but it has a large covered area between two buildings and a lot of people still came and bought. We had morning tea with some of our friends from our last church who had come to support us. A few of the new church members said "hello" and smiled at us, a couple even dropped by our table to say a few words. It was as if we are finally at peace and meant to be there. We stayed on past lunch time as Ray loves a sausage "sanga" (sandwich) from the BBQ. And it is nice when he gets one of the thing he likes for a change. Makes life more bearable for him.
     
    Tonight Baby Alex was not in a good mood, he cried a lot, he pulled his legs up to his chest and screamed some. I cuddled him a lot and Tori watched videos after our evening meal. Then she wanted a bath and I handed a crying Alex to Ray, putting him in the crook of his "bad" arm so he could pat him with his good hand. After a few minutes the crying stopped. I went back in and there is Ray watching football with the volume way down and a sleeping baby in the crook of his arm.
     
    If ever I have wondered why Ray has survived his five strokes and numerous other health events it is all vindicated with what I saw so clearly in that moment. Ray is here to help give love, to his friends, to his family however rarely they call on us and now to one more small addition to our family.
  18. swilkinson
    I have borrowed one of Sarah's (spacie1) sayings for my title. I have just been chatting with her and I know Gary is so much worse than Ray and yet I was pouring out my troubles to her as if she hasn't got enough of her own without the burden of mine. But I sure need to tell someone exactly how life is for me somedays, without the sugar coating, without the :"I'm fine thanks and how are you?" and without the blank look that comes over a non-caregiver's face when you tell them the trials you face each day looking after someone who is physically and mentally disabled.
     
    I am finding it hard to read other people's blogs today. Because I feel so down today I can't get that whining tone out of my voice. Because I feel so down today what other people are going through seems so trivial. Like talking about a hangnail when the person in the next bed is having a leg off.
     
    I am just so upset about what is happening in our lives. I have tried so hard to look after Ray and yet we now seem to be at the stage where it is all getting too hard. I am coping yes, I am enjoying life no. I need a break and yet I am afraid of what others will say when I take one. The snide remarks that HE was in care but SHE was out enjoying herself. I know a couple of people that will say that. And they are not part of the crowd observing the day-to-day activity here, but a couple who ring occassionally and tell me what an angel I am to take on such a heavy burden and do such a good job of it. Angels may exist in heaven but the rest of us do the burden of the dirty work here on earth.
     
    The first thing I smell of a morning is urine. Ray has a bottle by his side of the bed but is not always good at using it so he has a mat which I wash that the bottle sits on. That is one of my first waking thoughts:"Has Ray gone past the bottle again." This morning he had an "accident" on the way to the toilet. Why do I keep on calling them "accidents" when he does it so frequently? Isn't there some other word I can use? Maybe I can call it a frequent fecal event? He didn't clean it up, he never does, that is my job. Afterwards he doesn't even acknowledge that it happened. It is as if he doesn't acknowledge it then it didn't happen. So when the doctor asks him does this type of event occur frequently he answers:"no". And as it is not in his memory when I answer "yes" he frowns and shakes his head.
     
    He has a lot of bad habits now that he didn't have before at least not the the same intensity. The trivial , annoying ones, leaving taps dripping, leaving the milk out on the side, not wiping up spills. It is as if there is someone just waiting somewhere to clean it all up. That mysterious "mother figure" that we all need who will come by and sweep, clean, mop and dust so we have no responsibility to tidy up for ourselves. I know to a certain extent that was there most of Ray's formative years. He always had someone to clean up after him. Now it is beginning to grate on me. I want him to at least attempt to tidy up or acknowledge that there is a problem. Instead of him just walking away.
     
    And I could go on and on listing his faults until you were so tired of reading this rant that you were grateful for the little irritations of your own lives. And I realise for some people my rants are trivial in the extreme and what you are coping with as a survivor or caregiver is much worse and I do apologize.
     
    Usually after I get this far through the blog I back out and don't publish it. I wonder what you would feel if you could see my raw emotions, my tears of self-pity. But maybe if you tiptoed into the next room you could see Ray laying there asleep, quite oblivious to the turbulent emotions I am feeling. Because even when I yell them at the top of my voice he never acknowledges that he is in any way to blame for how I feel. "What are you so cranky about?" he says. What indeed.
  19. swilkinson

    Calling Nurse Susie

    By swilkinson,

    Today was a day with some difficulties. We started it early as we had to be in at the Nephrologist's( not Urologist's and a Professor at that) at 7.45am to see him at 8am. This meant a 6am start.
     
    I had a tummy ache all night from eating the wrong foods. I know, I know I am a big girl and should know better but it didn't occur to me that the topping on the fruit pie slice for dessert would be coconut until I had eaten it. Palm oil and I don't get on so I was here at 2.30am my time waiting for the pain to go away. Some medication and four glasses of water over a period of an hour generally dilutes the problem to manageable proportions. So 6am came early for me.
     
    Ray was very co-operative and got dressed and ate breakfast without a fuss while I searched for last week's ultrasound, some notes from the local doctor, some old notes from another specialist etc. Fortunately the early commuters had gone and the traffic was moving well. Only four lots of roadworks between us and town and then hey! my luck was in, there was a parking space left.
     
    The interview went smoothly, the specialist was a bit surprised to see us as Ray isn't on death's door but when he read the reports etc he said it was a good idea to review and change ALL his medication, all six main medications have to be replaced by others more gentle on the kidneys. Hot Dog!! Then Nurse Susie had to escort the patient to the cubicle and Ray had to produce a urine sample. That was semi-satisfactory and we got some remarks about uncontrolled diabetes etc. And then the crunch - Ray will have to go onto insulin!
     
    I have been fighting the change for a while now, as far as I am concerned this will be the end of our present life. No more impromptu stopovers at a friend's house, no more bus tours ( because of the disorganised meal times) no more Ray going out to Scallywags as he wouldn't be able to go through the routine by himself, and maybe not even going to Lions dinners as there is nowhere I can go with Ray to take his blood test and give him a needle.
     
    * Insert a line of swear words here and you don't have half the feelings I am feeling here.*
     
    And then we went on down to the pathology lab to get the test results and we had done the test wrong and it would have to be redone the following morning at the same time. It should have been the first one of the day. Well excuse me! Could someone have told me that? So I did call in to the nearby pathologist's where we usually have bloodwork done and got a full list of instructions, bottles, gloves etc. Tomorrow Nurse Susie will be on the job and this time it will be right! Right?
     
    A lot of you have been here before me I know and am wondering what I am going on about. Well at school I was told in vocational study that I should be a nurse and I said "Ewww, all that blood and bodily fluids, no thanks." and that looks a lot like what the future holds for us doesn't it?
     
     
  20. swilkinson

    100%, unbelievable

    By swilkinson,

    Most times I plod along from day to day. Like most people I do my best. That's about all your average caregiver can do. I am not rich, or beautiful or clever. I am just your average middle aged woman. I am plain and kind and reasonably good. Not outstanding in any way, shape or form.
     
    But we all excel sometimes. We are cited for awards of various kinds, from certificates in kindergarten to doctorates in University. We may be praised by our bosses, awarded by the community for acts of bravery or acts of charity or feted by our friends. For a moment we have our turn to shine. Some people have more than one moment as they excel in a praiseworthy field. Some outstanding or memorable athlete, the Tiger Woods of their field, shine again and again.
     
    What is this blog all about? I have been doing a free tipping contest on AFL ( Australian Football League, the kind of football popular in Victoria) and NRL (National Rugby League)the popular form of football in New South Wales). I am about in the middle of the scores in both competition, my tipping is erratic to say the least. But when I looked up my results tonight I had scored 11/11 on week 22 of the AFL ladder. I couldn't believe it, for once a perfect score. I am stunned. Inspired guesswork and an occassional read of what the experts have to say and I finally cracked a perfect score.
     
    The rest of my life is maintaining the status quo. I had to take Ray to the doctor on Friday as he had run out of scripts for a couple of his medications. I also took along the urinary tract ultrasounds for his doctor to review. He is extremely disappointed by Ray's diabetic blood test which showed it as out of control. The kidney screening was not good, other organ functions not much better. For someone who answers :"I'm fine thanks." Ray is nowhere near that self-appraisal. Mind you neither is he at deaths door. Just in that space where the warnings lights start to flicker and a few things need attention if he is to go on being well. So it is another round of specialists, he is to see a Urologist first and then maybe a Diabetic specialist. The last one of those he saw in 2001.
     
    Our family gathering on Saturday was nice, the family arrived more or less on time. And the two older grandkids were okay playing together. Naomi had a tummy problem and wouldn't eat, Alex was having a grizzly day and screamed a bit, normal range of behaviour for kids. I finished up taking Tori and Alex to the park to give everyone else's ears a break. Ray enjoyed the BBQ, the singing of Happy Father's Day. He loved the two cakes, white chocolate with caramel icing and chocolate mudcake with chocolate icing, one was for Father's Day, the other for his birthday. The littlies put a lot of candles on the cakes, enough to light up a small town. Ray couldn't decide which one to have first so he had a piece of each. He ignored the presents as he usually does, suffering from embarrassment if someone does something good for him has always been a problem for him, maybe more so now as he doesn't seem capable of showing emotions.
     
    Today he was a little slow, in his dressing, in his walking and talking and eating, a normal reaction to a full day yesterday. So he slept in as late as time would allow as we needed to get up for church. He came home and went to bed straight after lunch and got up just before dinner. He enjoyed a special meal cooked by Trevor ( well re-heated really) of more pork spare ribs and had a special dessert. It's good to spoil him occassionally. We will arranged a special dinner on Friday night for his birthday, just the three of us as the others are busy with other events.
     
    I spent some time at the Dementia Lodge with Mum today as she had another fall yesterday and I went to spend some time with her to observe her movements etc. She seems fine. One of the nurses came and told me her troubles. I guess I am a sitting duck really, sitting there beside my Mum. Anyway I hope she felt better for it. Her Mum is dying with cancer and she has to go back to New Zealand to take a turn nursing her mother to give her sisters a break. Trading paid nursing for unpaid as she said. But it is her Mum so she will use her holidays to help out other family members.
     
    Today on the whole was a good day. And I got 100% in this week's AFL football tipping contest. A lot of people are going to hear about that!
  21. swilkinson

    Spring is here

    By swilkinson,

    "Spring, Spring,
    the bird is on the wing!
    How absurd,
    I thought the wing was on the bird!"
     
    If I knew who wrote that piece of nonsense verse I would give them credit for it. It is just one of the many attachments in my memory to the word Spring.
     
    It is officially the first day of Spring today. It is going to be warm and sunny the weather forecasters tell us. It may go back to being wet, cold and miserable by the end of the weekend, but today is going to be fine and sunny. Which is just as well as Sunday is Fathers Day and a lot of people plan family picnics and outdoor BBQs to honour "the old Bloke" who fathered and/or raised them.
     
    Shirley asked what she should get her Dad for Fathers Day? I don't have any answers. Once they would have given him clothes, tools, books, photos of the kids, and the traditional ones, undies and socks. If they get gift certificates I am the one who has to make the decisions about what to do with them so I am happier if they decide on something themselves. Ray is not the man with everything so it is not hard to buy something for him. But something that will bring him joy and a smile to his face? I don't know.
     
    The tests have been done and I have to go to the local doctor to get results, maybe on Tuesday. Today Ray will be back from Camp Breakaway about 10.30am and I have a yard to put back into some kind of order after the workmen finished the carport yesterday. I need some run around space for the littlies on Sunday.
     
    And to top off our woes we go onto level four water restrictions today so no watering potplants. I have my tank water so will use that under cover of darkness and try not to feel guilty. But there will be no lovely annuals blooming until the rain starts filling the catchment dam up and restrictions are lifted. And gardening is one of my most fulfilling hobbies. (Ok Jean, this is a difficulty not a disaster but I do love my flowers.)
     
    I have been rethinking the "putting Ray into temporary care" for November, the more I think about it the less I want to do it. I know I need the break, even this three day break is like Heaven to me, but I don't want him to go downhill because I have imposed what I want above what he needs. And I know well what brings him happiness. A cup of morning tea and a piece of cake sitting on the verandah gazing at "his" view. The most cheerful expressions on his face of late have been when he is doing that. Even seeing the family or going out for the day is secondary to his need to just sit there in the landscape he loves.
     
    I have been reading a lot lately, on stroke support sites, in medical journals about strokes and there is one big grey area in all the reporting. No-one mentions the loneliness of the stroke survivor or of the caregiver. It is not just the "alone and unsupported" feelings that happen when former friends vanish, when no-one is near to help with a lift or soothe your heart when another appalling event occurs. It is the loneliness of making empty decisions and planning a future that heads more towards the nursing home and less towards the trip to the latest Resort. I don't know what the beautiful people are doing but the rest of us seem to do lot of laundry!
     
    And so the days will go on much like before. The round of doctors' appointments and the medical stuff is a part of our routine and takes up the majority of our "free" time. The family will come and go as they usually do. We will go to church and local events. And then, before we know it is will be the pre-Christmas rush, our Sydney family moving to wherever they have been posted (pray that it is close enough for us to visit without the journey upsetting Ray) and all the other things that summer brings.
     
    Summer heat, flies, heat waves, bush fires, BBQs, the beach on hot days, humidity, sleepless nights of tossing and turning, trying to keep cool. The days of wine and roses it isn't. But each season is to be treasured. I loved last summer, when we managed to get to the beach with the little ones and even Ray got to be in the water a few times. So I will look past the dark moments as they arise, to brighter days ahead.
     
     
     
  22. swilkinson

    For Kristen

    By swilkinson,

    Last time I took a few days off a few people were worried about me. Now isn't that wonderful? It is good to know I have friends in cyberspace who like to know where I am.
     
    Well, I will be missing for a couple of days this week. Ray is off to Camp Breakaway, I think he must be one of the people they ring if they have a cancellation. I am always happy when he gets a chance to go and he is excited too as this time one of the men who go to Scallywags will be there too. Imagine being provided with food, music and entertainment, no chores to do, no cranky wife to please. It must be like Paradise for him for a few days.
     
    I am going down to see my Sydney family like I did in May. I actually have builders here working on my carport but Trev will be here and there is access to power and water even with the house locked up so they are okay. Of course the predicted weather is cold, windy, rainy etc for the trip but trains are warm and I will manage okay. And it will be good to see Naomi who calls me Nanny/Granma because she can't remember which one I am. That is the pity of living at a distance from those you love.
     
    One of my real time friends is back home after almost three months overseas so I went and had afternoon tea with her. She was full of her tales of trips to Scandinavia and Italy. Her late husband was Italian and she learned Italian for three years so she could visit the aunts and cousins and speak to them in their own language, quite an achievement. She said sometimes they looked puzzled at what she said and then changed the subject so she wasn't completely understood but the tales she told had me laughing. Good to have friends in real time. Glad she is back though.
     
    I know there are lots of posts on missing the friends you used to have. I've done as much of that as anyone here. There were a lot of people I thought were good friends who I no longer see. That is partly my fault as life changed and I couldn't keep up with them anymore. Sad though as when our friendships break down both sides are losers. There are no winners as good friends are hard to replace, particularly ones you have shared a lot with. I wish I could gather all of mine in one place, so they could look around and see how many people have blessed my family and I in the one lifetime. Wonder if they would look around and be puzzled by what "those others" were doing there? Too often the only time the friends of a lifetime gather is at funerals, with the central figure unable to join in the fun!!
     
    So Kristen, I will be away for a few days but "I will", as Arnie says," be back."
  23. swilkinson
    It was our wedding anniversary today, 39 years and I was not mindful of it until half way through dinner tonight, a bit late then to celebrate. Not that there is much to celebrate at the present time. We were out at a restaurant with friends from one of our old service clubs. I could have announced that it was our anniversary I suppose but the talk was general and I don't like to draw attention our way. It was a nice dinner but all the talk was by the returned travellers about where they had been, both within Australia and overseas. A lot of them had been travelling extensively as some of them are quite well off and with the freedom of being newly retired. I try to tune out a bit rather than being envious of their doing what I so wanted and had planned to do on our retirement.
     
    Ray had a big day today as he went off with some of the Scallywags on an excursion. He left here 40 minutes late, as his driver, a survivor himself with minimal right side deficits, got lost. He actually turned left instead of right at a vital cross roads and finished up one suburb too far over, not hard to do. As a result they actually missed the ferry the rest of the party caught, leaving four of them to wait for the next one. Some time during that period Ray had a fall, he seems not to remember much about it.
     
    When they came home the driver told me Ray had had a fall but was okay as they just picked him up. After his shower tonight I noticed Ray had some blood on the side of his head, quite a large scar diagonally across from his left ear towards his forehead when I looked. So I bathed that and patched him up. Also some scarring on his elbow and a scratch down his right shin so looks like a fall and rollover. That is why he is 24/7 care. He so wanted to go out with the "blokes" and I was willing for him to do so , hoping it would increase his independence and his confidence. Don't know how I will feel abut it next time he wants to go.
     
    After Ray went this morning I went to see Mum who has had another "fall". This one involved a BIG black eye, not a shiner but a bruised and battered face. It looked more like an attack than a fall although the report was that she had fallen and been discovered lying in the corridor by one of the other residents. This is the second fall this week. I know she is old, has Alzheimers and has no speech or memory now but I don't like her to have brain damage from falls as well.
     
    Ray's incontinence is an increasing problem. The padded undergarments do not seem to solve it completely. I guess we might have to use them plus other pads. I will be happier when we get this problem sorted as I am doing a lot of cleaning up at times. It is probably his dementia not helping as he tends to go three times in quick succession now and then not for hours. Tonight he had a problem after sitting down for a long time. He went as soon as he got up from the table. The dinner was just about over so I hurried him out before the others noticed ( I hope) and got him back to the car.
     
    He also has got unco-operative again. I put out clothes, he put the dirty ones back on again. I guess this is a "boy thing" as he looked like our older son at aged eight sitting there sulking when I made him change. No-one wants to sit at a table on a night out next to someone who smells. I don't for one. So he has to change, and his co-operation does make that easier. I hope this is a transient phase and not a sign of things to come.
     
    I can wax as philosophical as the next person on the side of caregiving that is nurturing and caring. But sometimes life at the coalface is dirty and smelly and I want to down tools and go on strike.
  24. swilkinson
    Ongoing life sometimes gets me down. The medical blahs occupied most of this week . There were some lighter moments as we had a trip to a bigger shopping centre after picking up the ultrasound results on Thursday and on Friday when Ray went to Scallywags I went out to lunch with a dozen people from our old church. It was good to catch up all their news and gossip and even though only half of us were there we each had some news of the others. I am still not feeling at home in our new parish but at least don't feel quite as alienated as I used to, mostly thanks to the other women who are part of the Craft group we attend on Tuesdays. Working together as part of a group does build a bond.
     
    All the changes in life take some getting used to, even those full of excitement and happiness, like weddings and the birth of a new child. When changes occur there are bouts of grief along the way until what is new and different becomes the accepted norm. I guess all of life is about our ability to make adjustments and settle into new situations and not just the stroke recovery journey.
     
    Our son rang last night to ask if he could bring himself and two kids over for morning tea as his wife had a hairdressing appointment and thought this would be an ideal time for him to visit his parents. It think he came over with some reluctance, he wasn't sure this was his idea of fun anymore. But No 2 son had to go to a hardware store so it was decided that Granma would take the kids to the park and the "boys", Ray and his two sons, would go to the hardware store. Well, this doesn't happen very often so it sounded like a good idea.
     
    Must have seemed like a good idea to everyone but Alex who cried at the top of his lungs all the way to the park. But Granma walked around and around the park while his sister swung and played with a couple of kids who were there with their Dad. Then Sally, a little girl Tori used to play with in her last year before school came down to the park and so we stayed there for an hour and a half. Alex finally gave in and slept the last half hour or so. It was his first time sleeping under the play equipment with the noise of happy kids voices all around him.
     
    We prepared a quick lunch for the returning family members including Tori's Mum who now has a shorter , fuller hair style, her first change since Alex was born ten weeks ago. I thought it made her look much younger and more vibrant. Or maybe that was because she was sitting relaxing in the beauty shop while Granma , Tori and Alex went to the park?. And although Ray decided not to go into the hardware store but sit in the car and read his book he too had done something he rarely does, have some time alone with his sons.
     
    When Alex is much older and we walk down to the local park Tori and I will say to him:"Alex, we have been bringing you here since you were ten weeks old". So what we have been doing today is building new memories for us all.
  25. swilkinson

    medical blahs

    By swilkinson,

    I am so sick of taking Ray to appointments. I have been doing it for seven years now. At first after the 1999 strokes it was months of driving 35 minutes away a couple of days a week for physiotherapy, speech therapy, occupational therapy, the appointments were no necessarily consecutive so we would be away most of the day. Then there were doctors' appointments, specialists' appointments, MRIs etc. Then it was general check-ups, xrays etc to determine if he could have physio on certain areas so we have a stack of xrays of various kinds.
     
    Add in all the appointments needed to get onto Social Security, to tie up all the loose ends created by both our retirements etc. At this stage we had my parents living with me to, so Dad had to go to radiation treatment for his cancer and Mum to doctors for various reasons. When Dad fell and broke his arm I did have an aide take him to the Cancer Clinic three times a week so I only had to take him twice a week,that was a big help. Sadly Dad died in early January 2000 but Mum was still living with us so for a lot of the appointments I had to take care not to lose her while trying to deal with what was happening to Ray.
     
    When Ray fell and broke his left hip in August 2000 we went back to physio, back to specialists, back to wheeling him everywhere in the wheelchair. A caregiver's back is very vulnerable, both from holding on to the survivor when they are wobbly and hauling them up steps to unsuitably placed doctors' offices etc. A wheelchair is not always easy to take in and out of the car. Luckily I had a van so the wheelchair could be loaded in the side or in the back, if I could find the right parking spaces.
     
    The next stroke in 2001 sent us back around the same doctors, specialists etc. But this time there was a community based team of therapists who mostly came to our home so I wasn't forced to take the 35 minute drive too often. With Mum still living with us and her increasing confusion due to her Alzheimers I am afraid I would have refused to go with Ray and have to find alternate means of him getting around. Luckily having someone come to the home instead was an ideal solution.
     
    Mum went into care in late 2002 so we were free to travel a little, we had some weekends away and a couple of longer coach tours, Ray seemed to be doing great and coping quite well. The walking with the cane increased, he could walk maybe a hundred yards without too much difficulty, not fast but with me by his side at last we were able to leave the wheelchair in the car more and more. At last we had some time away from doctors and the medical merry-go-round. It was so good to be free of that. I can understand why survivors want to be free of therapy for a while. Believe me, the caregivers do too!
     
    2004 was a busy year for us. It was probably the closest we ever got to doing what other retirees do, a little travel, a few excursions to more distant parts of our state. There were friends calling on us again too. Some of them had stayed with us before Ray's strokes, then been afraid to "add to our burden" by staying with us while Mum was with us. I can understand that, it is difficult to carry on a conversation while Mum poured tea in the sugar bowl instead of her cup, or wandered off up the road while I was showing someone my potplants in the back garden.
     
    We have some new things to do , like minding our grandchildren and for a while we had some new hobbies, like learning lawn bowls and I started the Craft group at church and taught Scripture in schools again. Ray had a conversation on the phone with friends in those days too, I don't remember when that stopped. It was probably before the stroke in 2005. Perhaps as it got further in time from when he had worked or been active the memories started to fade and there got less to talk about. Maybe the dementia started around the end of 2004. It would seem like that looking back.
     
    In May 2005 he had the fifth stroke. Definitely he came out of that with decreased confidence, much less ability to act independently, less will to walk. The recovery from that stroke was much less than previous strokes, in fact the only thing he did recover was his ability to sit up unaided which he lost for a while. His walking eventually got back to being able to walk yards, but not the hundred yards he had been able to walk. Swallowing difficulties, falls, increasing incontinence have taken away some of the progress he would have made.
     
    It has been downhill from there. Not fast, some people wouldn't even notice, but I see it, the growing list of inabilities. Ray "can't do" so many things now. Age is a factor in that and diabetes too. I would say to others - this is not your future, it is just our story so far. You do not have the same combination of factors against you that Ray does so don't put yourself in his shoes. And it is not all bad news. Ray's life expectancy after the second and third strokes was not long, but it has been seven years since then.
     
    Today we went for Ray to have the urinary tract ultrasound, on Friday he has more blood tests. Life goes on. The medical blahs continue to take their toll. But as someone pointed out to me recently, at least we are able to complain about this, in some countries health care is unobtainable and what Ray and others here have experienced would not exist. Within a few weeks of a stroke most survivors die. We live in the lucky position of being able to complain that we go to the doctor too much!! Many people would love to have that problem.