swilkinson

Staff - Stroke Support
 View Profile  See their activity

  • Posts

    5,426

  • Joined

  • Last visited

 Content Type 

Blog Entries posted by swilkinson

  1. swilkinson
    I woke up early because the parrots were having breakfast in the tree near our bedroom window. It is nearing Spring and the blossom is fully out on the eucalypt trees and the little rosellas particularly just love the sweet nectar. From our camping experiences I know that after an hour or so they calm down but once I am awake I might as well have breakfast myself.
     
    The Change One diet went the way of all other diets. All I have kept up is the breakfast, a piece of toast and a piece of fruit for breakfast. And I will try to continue to take a 20 minute walk every day. I guess the name was right, I did change one thing. I've got the book so I can go on from there some other time. Maybe when summer is here I can convert lunch to a nice crisp salad and that will be step two. I did try adapting to the menu that was suggested but lettuce still tastes rank so no help there until the longer days come and vegetables grow faster and tastier.
     
    We had a visit from my nephew over the weekend, the one the boys pal around with. He had a refereeing job this weekend for "Paintball" and so had an evening off and came for a visit He referees when there are larger groups than the owner can handle or when one of the regulars is off. He has four kids so I guess he knows a lot about refereeing! He talked about going to see Mum at her Dementia Lodge, and explained with tears in his eyes that he had slipped in to see Dad a couple of days before he died so thought he should also see his Granma. Not easy for even grown grandchildren to cope with the changes in those they love. I see Mum twice a week so I see the minute changes. No regrets there, she is still my beloved Mum.
     
    I booked Ray two weeks in November for respite, it the same group as Mum's Dementia Lodge but in hostel care. He will have a room of his own and be able to go outside and have visitors take him out. It was not an easy decison and my mind is still saying :"cancel it, cancel it". But I won't. I remember how hard it was to put Mum in the first time, and how easy by comparison it was the second year to plan ahead and take a couple of breaks. And if anyone from Ray's family disapproves they can still go visit him there. They might find it easier than coming here to see him. The hostel is on three sides of a big courtyard. There will be birds there too as there are grevilleas planted there, the honey eaters love the ones across the street.
     
    I also had lunch with an old friend on Friday. She wanted me to look after her house and dogs while she was away on a trip to China. If it was a week I would have as she lives in a wonderful setting on the edge of a range of hills and the views are magnificent and the air clean. It is a couple of hours drive from here. But three weeks with Ray in a strange house with no breaks? no it is past the time for that now. I need the couple of breaks a week to keep my calm. I also need to know that there is a hospital close and help at hand if I need it. I think our breaks away together will be a week at at time from now on.
     
    And so it is on with the motley. That expression is a court term. The court jester's suit is called motley. The expression acknowledges that motley is not what the jester wears all the time. I think that is good to remember. We are not caregivers all the time. We watched a program about "Altruism" last night and how it showed in people's response to the Tsunami that devastated so much of Asia in our consciousness. There are people whose lives lead them to altruistic behaviour scientists say. So some people become carer/nurturers. One Hungarian twenty-something said he got a warm feeling when he gave out much needed water and explained at length how all deserve food no matter what kind of person they are. He shone when he stood in front of the crowd handling out bottled water and tears streamed down his cheeks when he described the plight of the people. Pity we can't bottle that feeling and hand it out to all who seem to behave so selfishly.
     
    You will not be surprised at the conclusion one of the professionals drew. In a small group (family or village) selfish people flourished at the expense of altruistic people, but in society as a whole altruistic people lived longer. Well...maybe it just seems longer?
  2. swilkinson

    seven years on

    By swilkinson,

    I had some spare time this afternoon so stopped and looked for some photos I want copied for my grand daughter. They were photos of her other Granma I took at her parents wedding. I want her to see how pretty her Granma Val was. I think it is important for all of us who knew her to keep her memory alive.
     
    While I was looking at the albums I found photos taken the morning of Ray's 2nd stroke. He stroked after attending a breakfast in the park at the end of a convention we attended. The first photos were taken three days prior and he was bright, smiling with confidence into the camera. He had a wonderful time at the convention, we were in a party of 18 from our club who went down seperately but met up for the four days of the convention. It was a thrill to have an adventure together, to joke around as you do with familiar friends, to laugh and have fun. We settled into our different motel rooms, met for drinks before going on to the welcome dinner. I don't have photos of that. It was a stand-up, finger food affair and it was good to relax after what had been a five hour drive from our previous night's stop.
     
    On the second day we had a picnic in the bush following a steam train ride so I have photos of us all eating away under the shade of the gum trees. There was a formal dinner that night so we are all dressed in our best and looking tanned from our day outdoors. In that photo Ray looks a bit tired but he always tired more easily from his first stroke nine years before. He never had that second wind that would boost him back up and allow him to go on partying into the wee small hours so we often excused ourselves early and went back to our room before the others.
     
    On Day three we had a town tour in the morning and an afternoon off, so Ray caught up on his sleep. A group photo was taken at the lunch and Ray is still smiling away. But I remember that night before we went out again he said he would be glad when it was all over. I think even after a slight stroke the toll it takes on your body lasts a lifetime. Ray worked for nearly nine years between his first stroke in 1990 and his second in 1999 but was never as full of health and good spirits as he had been before the first stroke. I did more at home despite working myself and did all the planning, packing etc for holidays. A lot of the work around the house and on weekends was on my list rather than his, looking back I can see that now. At the time I just took it for granted that Ray tired easily and put a lot of that down to his diabetes.
     
    On Day four we repacked the car before going to the park, I think because we were going to head off. We had planned to only had two more days on the road and once back home a couple of days to unwind before going back to our jobs. We walked to the park, two streets away, I think because we didn't think there would be sufficient parking. Looking at the pics I took there are some of our friends sitting eating the bacon, eggs, fried bread etc that such a picnic breakfast entails. I remember Ray wasn't hungry and in the end just had a little off his plate. In the last photo he looks very tired and his face is drawn. It was shortly after that he asked could we leave now and on the way back up the hill to our motel I could feel him dragging on my arm. He stumbled and seemed to find it hard going walking up what was really only a slight slope. I thought again it was the diabetes, we had had a lot of rich food at dinner the night before and he hadn't been taking his medication as regulalry as he should.
     
    That day finished with him in hospital in Intensive Care. He laid down as soon as we got back from breakfast. We stayed at the motel until our friends returned so as to say goodbye to those leaving straight away. I think we all slowly realised that something was wrong with Ray that was more than tiredness. One of our hosts took us both to the outpatient clinic at the local hospital and that was the last time he walked by himself for some time to come. It is hard to believe how we deluded ourselves. He had had a stroke, recovered, gone back to work. He had been on medication for most of his present conditions and yet he stroked again. But we thought it must have been the diabetes causing the trouble, thinking that a few days of rest would fix it and nothing more. We didn't recognise the second stroke although a lot of the signs were there.
     
    The last photo of the series is of me, five days after Ray's stroke. While the doctors were still running tests etc I went to a dinner to farewell all those who had gone off on a four day tour after the convention and were then heading off home. I look at the two photos of me taken seven days apart, in the first I am flushed and happy, enjoying life, surrounded by friends, Ray is there too smiling for the camera. On the farewell night you can already see the weary look that carers so often wear. The smile is strained and I look tired, I didn't want to be there at the dinner. I was worried and longing to get back to be with Ray.
     
    I remember feeling bereft that the last six members of our party would be on their way home the next day. I felt much older too. When a a major traumatic event happens in our lives it leaves an indelible trace. One that no future event will wipe out. There is no 100% chance of ever going back to where we were again as stroke survivor or caregiver. The face in the last photo looks wary, unsettled.
     
    It was five more weeks before I left Bendigo. After a very event-filled six weeks Ray was air-lifted home while I drove over 1000 kms in three days by myself. I guess that proved that I had the strength for what the next seven years would bring along.
     
    Our family and a few friends did come to Bendigo to support us. Our son said today he took 12 hours to get there by train, plane and bus. He stayed a week with me and flew back home. The others drove down and stayed four days. Friends drove for hours to get to see us for a couple of days. I have them still, those really good friends though some have health problems of their own and a couple I hardly hear from now.
     
    It is good and bad, looking back at those few weeks. But we are still here. Out of the 18 people from our club in the photo three have died, two women of cancer and one of toxic shock caused by a virus that collapsed her major organs. Hard to believe they are gone and Ray is still here. But that is life I suppose.
  3. swilkinson

    WAGS support group

    By swilkinson,

    Ray and I went to WAGS this morning. We hadn't been to this group which is the parent group for the Scallywags group he goes to on Fridays. There were about 40 people, survivors and caregivers and family members there , so quite a big group. It was mostly a business meeting so a lot of agenda items but also reports on past activities as well as planning of future activities.
     
    In Australia there are non-profit groups that can apply for designated government funding in certain areas so the WAGS group has tapped into some significant funds,meaning that most of their activities are not fully paid for by the members but subsidised from funding. This allows them to do much more than the members can usually afford on small fixed incomes. I guess this is another example of numbers making a difference and a benefit of belonging to such a group.
     
    Even during the business meeting certain personalities shone out. The joker, a middle aged woman, gave a report on her husband's recent stroke and a quite graphic demonstration of his urinary problems which made us all laugh. Even those who had not had the problem could see the humor in a wife learning to look after her husband's needs in this way for the first time.
     
    Another report on the Scallywags excursion included Ray's infamous fall and another man's encounter with a drunken woman on the ferry that made for an interesting story. This one involved the woman carrying a wrapped fish, which he said was a salmon, and how he came to knock it out of her hand and over the side of the boat and "release it into the water". This too made for a lot of laughter. The use of humour seems to make for a more comfortable take on an event and left us all waiting to see what new tricks the Scallywags group would come up with on their next adventure.
     
    There is an upcoming women's weekend in November, for women survivors and women who are caregivers. Until recently there have not been enough women survivors for them to have their own group though now numbers are growing so in years to come there may be two seperate groups, one for women caregivers and one for women survivors. I am going to see if I can go on the weekend, which is only local but will have guest speakers and a promise of "pampering" including massage. There is some funding to provide home caring for the survivors who need this while their primary caregiver is away for the weekend so I will investigate that too.
     
    There were other future fundraising and social activities mentioned but held over till the next meeting. So we will go as often as we are available on the first Saturday of the month to get to know this body of women and men who have had the life changing experience that we have had with stroke survival, all different, but all with that in common.
     
    I came away feeling positive about the experience. I could see some future doors opening for us as we share in others' experiences and tap into the group wisdom. With such numbers there are bound to be some friendly faces that say more than "hello". I was pleased to see the Scallywag members greeting Ray by name this morning. These may not be "friends" but they are certainly well-wishers and travellers on the journey who may some day become our friends.
  4. swilkinson

    acting on impulse

    By swilkinson,

    Did you miss me?
     
    I very rarely act on impulse but last Saturday I packed the car with enough gear for a week for Ray and I and drove it to Queensland. Six days and just over 1300 miles later we are back. And I don't regret it.
     
    Ray's brother and an old friend live within 10 miles of each other in a small coastal town in Queensland about 80 miles north of Brisbane. Both have been sick and had pretty serious health problems and operations since Christmas and somehow I just had to get to see them. It was two days driving each way and we only spent a day with each family but it was worth it. I now have a reassurance that both are in reasonable health and that is a big worry laid to rest.
     
    Ray was good and bad on the journey. At one stop where I couldn't park anywhere near the toilets and he had to walk he had a really bad panic attack and I had to prop him up as he started to go down. Never seen him do anything like it, it was almost like a fit. Another couple of times he got almost as bad. I think the idea of driving to see his brother and his friend was appealing to him but the actual journey threw him for a loop and every little thing seemed twice as hard to him as it does at home. Walking in particular seemed really difficult even for small distances. Maybe now he has dementia just the thought of the trip was so overwhelming that he snapped a little.
     
    By day three he was fine. He really enjoyed the day at his brother's house it was the first time we had been there in four years and they made us so welcome. We had booked into a motel for three nights and they almost insisted that we go and get out bags and stay with them. I thought with some of the less attractive aspects of Ray's health problems it was better to be by ourselves so we just said "maybe next time" and stayed there for the day and well into the evening. The visit to his friends' place was the same, they were overwhelming in their delight to see us. It is so sad to be so far from good friends. They moved north for the milder winters and to be near family but we sorely miss them.
     
    I drove for two full days to get home. Tonight with a lot of nightwork being done on our main highway it was so slow as we went out into open road and back through roadworks again and again. It halved our speed and doubled our time so it was way past dinner time when we arrived home. Ray is sleeping contentedly in his own bed now. He has been very good at night though I have had to help him up a few times through each night as exhaustion seemed to reduce his ability to get himself up.
     
    While on the road in my thinking time I have decided that we will get more driving holidays in while he is in reasonable health. I have two or three spots within a day's drive that I would like to spend a week at, several friends have extended invitations to stay over also so I will see if I can take up those offers too.
     
    For those who would criticise me for taking off so impulsively I have one answer. I have put off a lot of things in life due to Ray's health but some things I have achieved against great odds. And sometimes I think if you really want to do something and think you can't, just do it anyway.
  5. swilkinson
    I have just finished my first month of Caregivers Chat and I thought, particularly today, what a brave bunch we all are. Imagine anyone bringing a stranger home and doing all the things we do for our spouse, parents or children. Today there were people who did all that you could ever expect a caregiver to do, and more, and in some cases this wasn't the first person they had provided care for. No way would most of us do for a good wage what we do for our loved ones for free. Because we love them we care for their needs. And sometimes in so doing we sacrifice most of what others would think of as "our time to shine".
     
    I guess we could ask what makes a caregiver? And debate it on a posting a mile long. I am going to give some of my experiences of caregivers I have met during my life.
     
    The first caregiver I can remember knowing personally lived next door when I was in my teens. She was a lady who had had a "gentle upbringing" in India, although she was an Englishwoman by birth. When her husband had a slight stroke, he took to his bed and wouldn't budge. The doctor came and told him if he didn't get out of bed he would die there. And he did. She took over the running of the house, sold the car, tended to his needs ( I was a teenager so not privy to all of those). I remember she used to prepare trays with a little posy on them, cook special cakes he liked, walk to the local shops and haul everything home as he didn't want her to leave him for more than an hour. She had a lovely big garden, vegetables in the back, flowers in the front which seemed to be her hobby. She had two children who rarely visited her. I think he died after about 18 months of the stroke, wouldn't have lasted that long without her nursing him. He was probably late 50's. She went on living alone for many years after his death.
     
    The same years I also went to do errands for a lady who looked after her brother. He had had a stroke too. Her family made her give up her job in Sydney in a law office to come home and do her duty, first nursing her own mother and then her brother. I asked her once what she did. She said:"I read a lot and you should too." and gave me permission to come and borrow her books which I did for a while, I think she liked the company.
     
    Then we moved and I visited a woman who had a bed ridden husband, I think that was some sort of family medical problem, as we used to say back then, maybe heart problems. She had him on a side verandah where he had a nice view of the valley. Again my Mum had supplied me to do messages. I don't remember ever being paid for doing messages. I think virtue had to be it's own reward. When I went past the shop on my way home from the school bus I had to pick up his newspaper, if I was late he would shout out:"Is that d--n girl here yet?"
     
    I looked after a neighbour's husband while she was in hospital, minded other people's children while they were in hospital, kept in touch with family members for others who didn't have a phone in the house. I have been a caregiver of some kind all my life, as was my mother before me, and probably female family members stretching back over many generations. For in my case it was the training that made me a caregiver. It was years of "doing my duty, being a good neighbour, helping out where you can"- all favourite sayings of my Mum and Dad.
     
    And I think a lot of caregivers, if they reflected on their childhoods could say the same. But not all, as circumstances alter cases, and some just stepped into the breach because there was no-one else to do it. And struggle day by day to be a good caregiver, learning as they go along, particularly here on the boards or similar sites that deal with whatever the person they are caring for is suffering from. There are millions of us spread across the world. All caring for someone to the best of our ability.
     
    I do salute all caregivers, wherever they may be, whatever their motivation and despite all their feelings of inadequacy. We all have days when we want to scream, run away for the day, hog-tie our care recipients, scream at our relatives to come and help or take off for far-away places. But we are still here. And a shining example on days when we cope, with a smile, and provide that glimpse of what a saint is really like.
     
  6. swilkinson

    missed messages

    By swilkinson,

    We've had a fairly busy weekend, well, we have a fairly busy life. That means I use up every day doing whatever comes to hand. And running a household and looking after Ray and looking out for family and friends does constitute a busy life.
     
    On Saturday morning I did some gardening and some other tidying up processes. I wanted Ray to have plenty of sleep so he would cope with going out for the evening. As he is not a night person having a good long afternoon nap helps set him up for an evening out. He did and we managed to get away on time with him dressed in his best and looking good, and me draped artistically in a shawl over a nice blouse and a black skirt. Not too bad going really. And we did meet up with some friends and people did come over and talk to Ray, and I was able to circulate a bit and that was good too. Saw some of the friends I left behind when I had to stop my voluntary ministry with that church to come back and look after Ray full-time at the end of 1999. Not everyone understood why I had to do that and I hope that seeing him last night, seven years later, still with us and eating and enjoying himself did put some of that to rest.
     
    This morning after we came home from church Trev missed a call and dialed up the number that we use for free messages and I had missed five calls. I was busy and I forgot to check. One was from the Dementia Lodge where Mum is saying she had had another fall and did I want to come over and look her over and it was from yesterday morning!
     
    I felt like a thoughtless, neglective daughter, it doesn't take much before I feel guilty. So I asked Trev to keep an eye on his father for me and went straight over. And she is fine. She is bruised and battered down one side of her face, obviously feeling not her usual self as she wimpered when she put her hand to her face. And she has a cough now. Falls can sometimes bring on pneumonia when they occur in the middle of a winter's night so I asked for the nurse to check her again in the morning, to see she doesn't have a temperature too. I realise at her age, with her conditions it is impossible to prevent falls. And although staff check regularly through the night they can't stand at the foot of the bed. So I stayed an hour or so and just reassured myself that everything was okay. Phew, that was close.
     
    Another call was from one of Ray's cousins. Usually she calls to pass on bad news from her part of the family. Not that she is not a lovely person but passing on news seems to be one of her functions within her family. I got back to her and it wasn't bad news, just a catch up call. I felt as if I had been reprieved a second time. The other calls just need some attention through the week. So nothing to worry about. Thank good ness for that.
     
    It is scary how little things can claim your time and dominate your life. At the moment our focus is on medical issues. The appointments and frustrations of trying to get the right treatment and the right set-up for Ray's incontinence so we can cope with the future. I read sometimes that success is 90% planning, 10% doing. I agree with that, in this stroke surviving world planning is really important. Maybe so important that it makes the difference between the care giver staying or going, between the survivor staying at home or having to go and live in a care facility. Thinking about the problem, researching the problem, fixing the problem seems to be the right order. And a long drawn out process.
     
    And when I concentrate all my attention on one area of our lives other things slip out of sight. And oversights occur. Like forgetting to check for messages. And maybe not only missing calls coming in but missing making those outgoing calls that mean we keep up with old friends and keep our friendships going.
     
    I am going to have to try to widen my vision and not let Ray's continuing ill health narrow the focus of both our lives.
     
     
  7. swilkinson

    winter blahs

    By swilkinson,

    For all of you in the northern hemisphere think of this as March, wet, drizzly, high winds, grey skies, people battling across car parks with the rain on their glasses, wet hair dripping down the back of their necks. Okay, that is picture of our day. Blahhhhh!
     
    I got up slow today. There are days when I don't want to get out of bed and face the day. Then a friend rang and requested help. Her smoke alarm was going off. I held onto the phone while she turned every electrical appliance off. It still went on ringing. So I went down and helped her set up another one. That didn't ring so the fault was in the alarm itself. Her brother-in-law will come and attach the new one which wouldn't fit in the same spot (of course).
     
    We seem to have had a series of bad news emails over the last few days. I open up my inbox hoping not to find anyone else's dear aunt, cousin or nearest and dearest has departed since they last contacted me. Okay, a lot of our friends have elderly parents and this is the time of the year when illness and death seem to be the rule rather than the exception. But even if you are expecting there to be bad news it doesn't make you feel any less sad when it comes. So that adds to the feeling that life is very blah at the moment.
     
    I replied recently to a post about friends who leave you after strokes and find someone else to be friends with. Seven years on we still find people who were once enthusiastic supporters but after so long have given up on us and don't return our calls or contact much any more. That doesn't mean they were never our friends, but we can probably count them now as friends from the past. Not part of our present group. And that is sad. Some of them I really liked.
     
    I know my troubles are mild compared to a lot of peoples. It is like complaining about a toothache when the person next to you is facing their leg being amputated. There may be bigger issues but each person has to learn to deal with their own issues and there are no "my problem is bigger than your problem" issues here. Just the daily grind of facing each day bravely and with a willingness to deal with each challenge as it arises.
     
    Yesterday Ray had incontinence of both kinds. It was a fair old clean-up job and by the end of it I was ready to run away from home. I know it is not his fault, I try to smile and say :"No problem, pet." But some days the smile is more of a gag reflex. I know one day I will look back on this part of my life as "the good old days" but right now I am living through the moments and they are grey not gold.
     
    So I have in mind that we need to go to twin beds now so Ray's problems can be addressed in a different way. I have resisted doing this on the grounds that this sharing a bed is symbolic to him of our being married. It is also our original marriage bed. Those of you who live with those values dear to the heart of the English and Europeans will probably understand that. It is a big deal to Ray.
     
    So will the sun come out again? Of course it will. Next week we will go furniture shopping, find suitable beds and something nice in the way of sheets and quilts and pillows. Maybe go for Bonnie's Country look. And as usual count our blessings. Ray is still here, we are still together, Spring will come again.
     
     
  8. swilkinson
    Those of you who have been reading my blog for a while know all the angst I went through as the little church I used to go to was closed down. That was in March with the last service being on March 19th. The following week I went in the other direction to St Christophers which is in the next suburb to the one I live in. This is an easy access church, lots of parking, all on one level, with a ramp into the hall and good toilets etc so ideal in many ways. We go to a 9.30am service which is an hour long and followed by a cup of tea or coffee in the hall. About twenty or so stay for that, mostly 70 - 80 year olds and mostly women on their own who may or may not be widows. It is a very normal scenario in churches now.
     
    Ray and I and a friend also go to Craft group on Tuesday afternoons. There are about fifteen ladies there usually, maybe 20 - 25 all up but never all there at once. They range in ages from a couple of people younger than me to a lady who will celebrate her 99th birthday next week. They are nice women who smile and talk a little while we are there. But that is the extent of the friendship so far.
     
    But the whole truth is I don't feel at home there. I don't know why I don't, I just don't. Which leaves me with a dilemma. I cannot resurrect our old situation, the church is closed, the people scattered. I could go to the other church in that parish but the access is impossible, the toilets cramped and unsuitable and I don't think that has much merit. Or I could change again, make a new decision. But I don't really want to do any of that. I think the discontent is in me. I am still grieving for something that has gone and unwilling to make the moves required to be happy where I find myself now.
     
    Is it a lot to ask, to find a church I am happy with? I don't think that I am a discontented person by nature. I know that I am dragging a lot of baggage with me. Ray, for instance, is not your go-anywhere person. He has special needs. I cannot go to a 7am service with him, or a 6pm one in the middle of winter. I can't take him where there is a hill to climb, where the toilets are on the next floor, around the back or down a narrow corridor. He needs speedy access to the toilets sometimes. Even with the padded underwear.
     
    I know you will be thinking that like stroke recovery there is time for things to improve. I agree. Six months more down the track and I might be as happy as I used to be at our old church. I might be singing the praises of the choir, the supper club or the carers group, none of which they have right now. I know that if I want a group to serve my needs I could actually start one. And if I felt a little more at home that is probably what I would do.
     
    But at the moment I need to quote Shakespeare and say:"Now is the Winter of our Discontent" and feel sorry for myself.
     
    Tomorrow will no doubt be another day, and next Sunday someone might come up and offer the hand of friendship and genuinely mean it and I will feel much better. I hope so. :chat:
  9. swilkinson

    20 minute walk

    By swilkinson,

    As I had a false start last week on my "Change One" program so I have I decided to repeat Week I. So I am just doing the piece of fruit, piece of toast for breakfast and the twenty minute wlk every day for another week before I go on to tackling lunch. The idea of the "Change One" program is to change one thing a week that makes your life healthier until you are a healthier, happier person. For someone who is almost a grouch in winter like I am this should pass the time until Spring comes tip-toeing in again.
     
    The hardest part is where to go on my twenty minute walk. I live on the side of a ridge, it is the second dune in from the beach but up the cliff end so the cliffs rise in tiers behind me. So if I walk towards the beach I walk up hill whichever way I go. We don't look over the beach but the valley and the main road, so if I walk down the hill I come to a busy main road which is very hard to find a break in the traffic big enough to walk across and then there is not a continuous footpath.
     
    So I decided to walk up the road, over the hump, down the hill and along the street we live in. At the top of the next hill I can turn left, go around a loop and back home again. This is approximately twenty minutes. But there is a downside to this walk. It is the way I used to take to go to visit my Mum who had a little house three streets over from where I live. So as I walk over the second rise I can see the street she used to live in and almost see her little house. I find this is bringing all sorts of memories into my head and I long to just be able to run down that street, open the gate and go into that little house that once held so many dear memories.
     
    Okay, so I cleaned that house out when my Mum went into care and I had to pay a fee, a very large fee, to maintain her there. I paid the real estate agent that sold the house, I signed all the paperwork for the sale. I know it is sold and belongs to someone else, has done for three years. From the outside it is not much changed but along the back is a new deck and inside, so an old neighbour says, is a new kitchen and the front room had the carpet torn up and the floors polished. So if I opened the door and went in it is not Mum's home but the home of a complete stranger.
     
    I can understand that when a person has dementia they can sometimes run away to a house they lived in way back in the past. They can knock on the door and wonder who this stranger is who opens it when it should be the dear one they once knew so well opening the door and letting them in to warm themselves. An old fried of ours did that, he was away from his nursing home for over 48 hours and the police finally found him in a suburb he had lived in three moves before. Obviously this was a place that held dear memories and called him back. And so the little road over the hill calls to me.
     
    Because I have lived in this area nearly forty years as I pass the houses I remember the people who used to live in them. I remember them as they were when I was a girl in my late teens, a young married woman, a working woman with teenagers of my own and the stay-at-home carer I have been the last seven years. When I was a young Mum a few mUms gathered together in each others homes twice a month for a Coffee Morning. This was before Playgroups were in vogue and we had about half a dozen Mums and their kids gathering together out of a pool of a dozen or so.
     
    So I pass Judy's house, Barbara's house and Marilyn's house. Judy has been married three times, her aunt lives close by so I have had news of her all the years. Barbara had a husband who spent some time in jail for "domestic violence" as it used to be called. She moved in the middle of the night, leaving most of her possessions behind. She did it with a couple of small children in an old battered car. Almost as battered as she was from time to time. Barbara had a lovely throaty laugh. She loved the Coffee mornings but never hosted one. I guess looking back that she was afraid her husband would come home and create a scene in front of the other girls. Marilyn left her house and her husband and ran off with a tradesman of some kind, can't remember who now. It is such a long time ago.
     
    I pass the houses where I remember the original occupants, those two mortgage families who managed to pay off some of the loan and then moved on to build another house in another area until they owned one outright. Some of them I have met in the local shopping centre or have seen at, sadly, funerals of mutual friends. There are the houses of the older original families too and I think of those "old ladies" who came out to say "hello" and pass the time of day. And, goodness me, must have been the same age as I am now, those pleasant, grey haired women wearing old comfy shoes and loose comfy sweaters, just like the one I am wearing now. How those years do fly by.
     
    So my 20 minute walk is a trip down memory lane, so many things to think about that it seems only a few minutes and I am home again. And there will be new people to remember too, those younger women walking with babies in push-chairs and the middle aged men walking dogs, and even a couple of teenagers flying past on bicycles. If I continue my walk they will say in years to come:"Remember the old lady we used to pass on our walks. I think she lived close by. Maybe down the other end of our street."
  10. swilkinson

    bad thoughts

    By swilkinson,

    Funny how easy it is to tell someone you don't expect things to be perfect. "Of course" you say, smiling graciously, "I don't expect things to be perfect." What a dissembler I am. Of course I expect life to be perfect otherwise why am I even mentioning it?
     
    Had a couple of not so good days. A friend let me down. It may have been a misunderstanding I suppose, as even face-to-face communications isn't always straight forward. She had asked our son to go and help with a BBQ at her place today. She told him she was having a few friends in. She had been up earlier in the week asking about how I prepare for a BBq, so he assumed and I did too that we were invited. We weren't. Luckily I went down this morning and asked what her plans were for the day intending to follow that up with an offer of help. She just told me she was a bit pushed for time as she was having a few friends around for a BBQ. I took the hint and left.
     
    Now I could say "OH well, these things happen." but I guess these things happen a lot to stroke survivors and their caregivers. Former friends walk past without saying hello, you don't get included in outings any more, your Christmas card list dwindles. If it weren't for family and a handful of faithful friends we would all be very lonely. No more parties, no invitations to weddings, very few people calling around. I can see that having someone like Ray at a party can be a bit awkward, after all he does have some swallowing issues, and as we come as a package if he is excluded, I am excluded too. It is getting more isolating now, this stroke thing.
     
    And another friend let me down too. She passed on something that I had said to her in confidence, and passed it on out of context. It is getting to the stage where it is harder to communicate with people. If you can't trust an old friend who can you trust? Sometimes I feel in winter that I just want to climb into a nice warm cave and do the bear thing, hibernate for the winter. Not being a kind friend, looking after my neighbours properties. I don't want to spend my days keeping up the gardening and the cooking and the cleaning, and looking after Ray's health and well-being. Sometimes I want to sit in the corner and sulk and think bad thoughts. The way I did as a child when something or someone annoyed me. Or sit and daydream in front of the fire with a warm cover around me, knowing that "someone" would give me a cup of steaming soup, a slice of fresh bread and butter. Where is the doorway back to those "golden years"?
     
    Ray seemed tired and out of sorts today, did a few silly things, nearly took a couple of Panadeine tablets that Trevor left on the sideboard thinking that they were his tablets. I will have to be more vigilant now. And it is getting harder to relax as I AM being more vigilant now. It's a vicious circle isn't it? The dementia, I guess, is the cause of a lot of the confusion. I am hoping that is all it is.
     
    I go to bed each night knowing that tomorrow will be another day and hopefully a good one. And some of them are, I have some lovely days. And so I don't get depressed when a few things go wrong. But some nights I do want to scream and cry wildly into the night like a banshee. And tonight is one of those. So just as well I was able to connect to a few folk in chat. Takes some of that lonely feeling away.
  11. swilkinson
    Well, that was a bit of an anticlimax. I told Pam I would host Caregiver chats 8pm New York time Tuesday nights. She said we would keep it low key, no big announcements etc. I guess that probably wasn't the best approach. How will people know I am there if they aren't aware that caregiver chats are starting?
     
    Anyhow I set my computer up and sat in chat, notebook at the ready, welcome sign on - and read my diary. I found an old one from 1994, the months leading up to going to college. Like most of my attempts at keeping a diary it was only a dozen or so entries for six months. I was doing my Clinical Pastoral Care at the time, a 400 hour course, 100 of which was face-to-face the other 300 hours practicuum in the hospital. It was a busy six months as I was also working three days a week and studying two other subjects. I was younger and more energetic back then. Ray was at work and we had no-one living here.
     
    At the end, November 1994, I was surprised to read that my daughter and son-in-law moved to his mother's place while they were building their house, our son had a car written off due to an accident and our car was run into that month too. Looking back over the years I know they were filled with many happy and sad events but putting a time and date on them has never been one of my great talents. I just live life one day at a time with a forward motion and that is it. Someone else will have to piece together my life after I die and say:" IN 1994 Sue did a CPE course in G--- hospital. At that time she was also involved in---"
     
    HostStephen came in about 8.50pm and we chatted till 9.30pm NY time. I guess during that time there were a lot of people came to the board and didn't know that they were welcome in chat, caregivers and survivors alike, to participate in a dialogue, or conversation and release, just for a moment, their minds from lonely thoughts.
     
    When I was doing the ward chaplaincy as it was called for the six months or so in 1994/1995 a lot of people said that to me: "I was lonely and bored and then you came along". I guess that is the #1 reason a lot of us are on this site. We were lonely and bored and maybe a little lost, with some problems and nowhere to turn and them we found this site and lo and behold! here were other people with similar problems and some experiences they were willing to share. And some of our loneliness left us and we can come here, read the posts, read the blogs, do some posting of our own, keep an online diary. There is still not a lot of light at the end of our particular tunnel but there is some little candles providing their wavering light. We are not alone. There are others here in Strokeland.
     
    This particular diary finished on February 15th 1995, the day I started my first day at college, I did a year full-time, mastered five subjects and finished my Diploma in Theology, all in a nine month period. I only slept four hours a night to give me plenty of reading time. What a life!
     
    My final entry was about the books I had just put in my temporary library shelves. there were 40 of them and this was just the first semester! I was wondering how I would cope with all that reading!
     
    What a funny thing to do, looking back 11 years to the "me" I was then. Maybe in eleven more years I will look fondly back on this time of my life too.
     
    In the meanwhile, don't forget, caregiver chat will be on again, 11th July 8pm - 9.30pm New York time. I'll keep a chair for you shall I?
  12. swilkinson
    I believe that some times in life you have to consciously make adjustments. It is like driving down a dead end street and realising that although your destination is visible to where you are there will have to be some backtracking before you get to where you want to go.
     
    To some extent that is where I am now. I have decided that if I have to back track then I might as well take in some new scenery on the way rather than track back over old routes. So I am going to do a course out of a book called "Change One" which is a lifestyle change where you do one change a week for twelve weeks. It is not designed as a diet more as a healthy lifestyle adjustment. So I will take in different ideas week by week. A friend of mine did it last year and was pleased with the results. It is not as radical as what Jean has been doing but I am hoping it will be instructive.
     
    I keep using the "I" word and that is going to be adjusted too. There are a lot of problems in our household at the moment, leaving me with a feeling that I am sitting on the see saw and holding up most of the weight. I think this is just the way it looks from my perspective. My grown-up kids think that I should , as wife, mother and caregiver, do most of the work here anyway. They see this as my full-time job. They also tell me they have "a life to live", I wonder if I had one of those at the same age?
     
    Yesterday the family gathered for a BBQ, I didn't BBQ but I got out all the food, prepared most of it, washed up after most of it. I had some help but needed more. It is as if there is an imbalance somewhere. Now I was getting angry with that but this morning heard a radio program where relationships were described as always being 40/60 and that has to be okay if the relationship is going to survive. Fair enough, if yesterday's BBQ ws 60/40 and I still enjoyed it, that has to be acceptable. Life is never going to be perfect, is it? And as a friend pointed out at least my children want to come and see us, eat with us, have their children have a relationship with us (hers don't) and I should be grateful for that. And I am.
     
    Today another friend told me of her sister-in-law and the struggle she is having with a husband who has had a stroke similar to Ray's but who is angry, abusive, ungrateful and generally giving her a hard time. Ray isn't like that. I should be grateful for that. And I am.
     
    It was my Mum's 88th birthday yesterday. I went down to see her at the Lodge with a birthday cake and some new sweats as she is running down her wardrobe now. It was a quiet morning and the staff were happy to cut up the cake and distribute it among the folk. There were actually two cakes as another lady celebrates her birthday on the same date. So we sang "Happy Birthday" and a staff member helped Mum and Helen blow out their candles. Both the birthday girls were really oblivious to what was happening. But both were clean, well looked after and cared about. I have to be grateful for that. And I am. And as a bonus my daughter also came and spent some time with "Gran" so I was not alone on the visit as I usually am.
     
    So sometimes to me life is like an amusement park. There are swings and round-a-bouts, merry-go-rounds and funfairs. You get to be at all the booths for a short or long time. Each has some prizes and some penalties. It is my choice how I see each period of time. Ray and I have had some really good times, taking the kids away on family holidays, camping expeditions and just the two of us on oversea trips. We are still together after 38 years. We have three children, four grandchildren and a lot of life's blessings. And yet I still want life to be perfect? That is silly of me isn't it?
     
    Better to be content and not suffer from the bruises that come from bumping up and down on my end of the see saw.
  13. swilkinson
    1. Being loved.
     
    2. Laughing so hard my face hurts.
     
    3. Looking into the eyes of my grandchildren and knowing they love me.
     
    4. Looking at my grandchildren when they are sleeping and knowing how much I love them.
     
    5. A special glance that says Ray understands.
     
    6. Singing one of my favourite hymns.
     
    7. Taking a vacation.
     
    8. Hearing our favorite song on the radio.
     
    9. Lying in bed listening to the rain outside.
     
    10. Driving where the scenery is beautiful.
     
    11. Coffee with friends.
     
    12. Getting email.
     
    13. Giggling with girlfriends.
     
    14. A good conversation on chat.
     
    15. The beach on a summer's day.
     
    16. Finding a 20 dollar bill I'd forgotten I had.
     
    17. Laughing at an old joke.
     
    18. Looking at beautiful gardens.
     
    19. Movies on my favourites list.
     
    20. Playing the fool.
     
    21. Laughing for absolutely no reason at all.
     
    22. Having someone tell you that you're beautiful.
     
    23. Laughing at an inside joke.
     
    24. Friends, near, far, old and new.
     
    25. Accidentally overhearing someone say something nice about you.
     
    26. Waking up and realizing you don't have to get up yet.
     
    27. A kiss on the cheek from an old friend.
     
    28. Making new friends or spending time with old ones.
     
    29. Playing with the grandchildren.
     
    30. Having someone make something especially for you.
     
    31. Sweet dreams.
     
    32. Chocolate biscuits.
     
    33. Road trips with friends.
     
    34. Walking on the water's edge.
     
    35. Making plans for a day out.
     
    36. Making a special dish for a dinner party.
     
    37. Having your friends send you homemade cookies.
     
    38 Holding hands with someone you care about.
     
    39. Running into an old friend and realizing
    that some things (good or bad) never change.
     
    40. Watching the :cheer: expression on someone's face as they open a much
    desired present from you.
     
    41. Watching the sunrise/sunset with someone you love.
     
    42. Getting out of bed every morning and being grateful for another
    day.
     
    43. Knowing that somebody misses you.
     
    44. Getting a hug from someone you care about deeply.
     
    45. Knowing you've done the right thing, no matter what other people
    think.
     
    46. Finding whatever it is you were looking for.
     
    47. Finding the right address first time.
     
    48. Finding a parking space first time.
     
    49. Not having to pay bills for a week.
     
    50. Being on here.
     
    I know "lists" are not fashionable at the moment but a friend sent me hers so I rearranged it and added some of my ideas. And here it is.
     
     
     
  14. swilkinson
    I am not a great one for watching daytime television but today for some reason turned on "Dr Phil". Now I don't like that "here's your problem, here's you answer" type program. I know , like most of you do that a problem that has taken a long time to come to our notice will also take a long time to fix. And a lot of hard work too as the weight loss gurus will tell you. But you also can't fix a problem until you have had a good look at it or as Dr Phil said "asked a zillion questions about it." The problems he discussed had no bearing on my own problems but I think there is a nugget of truth in a lot of platitudes and you get gold wherever you can find it.
     
    Today Dr Phil said one thing that has remained in my mind all afternoon. He said; " you've got to know who you are and like who you are, however much that person might have changed." I guess we have all looked in the mirror and seen who we are today, needing a haircut, maybe a bit overweight, slouched posture, out of shape and not liked who we have become. But we can at least feel sorry for that poor soul and offer to help in any way we can, just like we would for a stranger. And in that mode also offer to put some time and effort into the project too.
     
    So if you woke up in a "poor me" mood this morning be your own "Dr Phil". Ask yourself a zillion questions, who are you, why are you here, who do you want to be, how much effort are you prepared to put into that? Those are the kind of questions that might help to show you the real problem. Not that you stroked or are a caregiver to someone who did but how you can get to be comfortable with being who you are now. And then work out some easy steps to doing some running repairs on your life so that not only are you happy with who you are, but happy enough with how you handle that to give yourself a pat on the back and say: "Well done. I like your style."
     
    Wow, how true that is for me. I need to change some of my attitudes too. I have grown a bit complacent about my role as a caregiver, a little grumbley, a little half-hearted. I need to get my act together too. And also the way I see Ray. Ray can sometimes become a "nuisance" in my sight. He does something and I think:"There he goes again, is he doing that just to annoy me?" And I go into my St Susan the Martyr mode.
     
    I have to know who Ray is, and like him for what he is if our relationship is to have any real happiness. I know his condition is changing and I have to prepare myself for that. It is not his fault. He didn't order this part of his life from a catalogue. It is as much an inconvenience to him as it is to me. It is part of my job as a caregiver to "care" for Ray in all the ways anyone can think of.
     
    So Kristen, you have stirred up a hornet's nest. Liking who I am - the project for the next part of my life.
     
    And Jean, tonight the grey hairs are RED.
  15. swilkinson
    What a week that was. Last Friday when Pamela had her regular check-up it was not good news, blood pressure too high, bloodwork showing trouble with kidneys etc, usual late pregnancy thing. She was told to take it easy over the weekend and come back on Monday. Mondays results still not good news so eventually she was ordered into hospital. The family rallied around, Trevor moved over to their house to be standby carer for Tori, Steve got some leave and went back to hospital to be with Pamela. On Tuesday afternoon the gynecologist decided to induce the baby. We all felt and worried.
     
    Tuesday was a worrying day. I had an email from an old friend telling me that mutual friends had cut short their overseas holiday to fly back to Australia to the bedside of their daughter-in-law who died as a result of childbirth. Their son would now raise the new babe and his wife's two teenagers. What sad news, women do still die in childbirth. I alternately worried and prayed all day.
     
    Wednesday morning I was still worrying when the news came through, baby Alexander James had been born, his mum was in labour from midnight on but both were well. Hip hip hooray. What wonderful exciting fantastic fabulous news. :cheer: :cheer: :cheer:
     
    We went in late Wednesday afternoon to see our new grandson and congratulate our daughter-in-law. Pamela had had over 24 hours without sleep so was quiet but still showed the joy and pride in her baby that mothers do. Ray and I were there when Tori saw her new baby brother for the first time. Funny how maternal even small girls are. "Can I pat him Mamma? Can I kiss him? Can I hold him." And she was allowed to hold him, she looked like a small Madonna, head bent to gaze tenderly into his tiny face.
     
    You'll be glad to hear she acted nothing like a Madonna when she and Trevor came on here for dinner. She acted like her usual, boisterous, demanding five year old self. That is good news too. I don't want her to be too angelic, that would worry me.
     
    Thursday went sending emails as well as all the usual Thursday things. Trevor and Tori came out after school, stayed for dinner, went back to her place to bed. By today we are used to the news. FOUR grandchildren. Add that to my profile, my three children, my FOUR grandchildren. Trev and Tori will be in and out all weekend. Granma is always on call. I don't mind. I think that is the way it should be. :cloud9:
  16. swilkinson
    Just had a looong phone call with a friend who works full-time, is studying for a degree and acts as secondary caregiver for a disabled grandson. His life was falling apart because his hot water heater had sprung a leak and flooded his apartment. Boy! do I know that "this is the last straw" feeling he is experiencing right now. Those unexpected events that throw us into financial and emotional crisis just because we are already right at the end of our tether.
     
    What can we do with this lost in the midst of life feeling? Well, we can take some precautions. My emergency plan is one of those. What happens if Ray hears a thump, comes out of the living room and there I am face down on the kitchen floor? He has a list of telephone numbers to call, one of them will answer and he will, with the help of that person, decide what the next step is, call an ambulance, fetch a next door neighbour, allow time for the person he has reached to come over and assess the situation.
     
    My friend is worried that in the case of something happening to him that there will be no-one to make decisions on his behalf. So we talked about leaving written instructions, with his daughter, with a neighbour and I volunteered to have a copy. So that is one thing taken care of. As he is co-caregiver for his grandson his daughter needs to have others involved in the grandson's emergency care too, in case "Pa" is not available for a while.
     
    Tonight's episode shook his faith in himself. But he did call a plumber and luckily there is one in the area he lives in so he came and took some emergency measures. Tomorrow and for the next couple of nights he will stay with friends as his water is cut off for now. This is the time when those kind of friends who can put you up for a few nights are really important. It doesn't take much for your plans to come unstuck.
     
    He was lucky this was not the "visit"weekend, he has his grandson every second weekend. We as caregivers sometimes don't give credit to those who help on a part-time basis. But this grandfather does more than his share of the minding, with the other grandparents saying they are too..old...far away..busy with their own lives. All the usual excuses.
     
    The person who takes Ray to Bible study is having radiation treatment for cancer over a six week period so Ray isn't going to Bible study for six weeks. Ray feels we should be able to help his friend's wife out too by taking him to treatment but as it is early morning that isn't possible. We are keeping in touch by phone on a regular basis and have send a card too. I guess because caregivers are already stretched in what they do they can seem "uncaring" towards others. We just don't have available time, we are committed in one area and that is that. But it certainly feels as if I am not paying back some of their kindness.
     
    One of the problems with a caregivers life is that the survivor is the centre of focus, for all the medical and rehabilitation staff, for the family and sometimes for the daily routine as well. In this the caregiver can lose his or her own life. I have read the "Caregiver's bill of rights", I have had people explain that I need to take care of myself, but like a few people in recent postings I don't know how to withdraw my focus from Ray and the things he needs in life and determine how to live out some of what I need to do to "take care of myself". With some stroke survivors this is possible as they improve to the point where they don't need as much care. This has never really happened with Ray as he gains some independence only to lose it again to the next stroke, fall or illness. And with the dementia as an added problem now the burden will increase.
     
    We have to live each day as if it is the best day we are ever going to have. As it might easily be. And appreciate the relationships we have, with friends, with family and with each other.
  17. swilkinson

    changes

    By swilkinson,

    Just talking to Kristen (givincare) who is in a hotel room preparing to move tomorrow. She had thoughts that her son would not move with them some time back. I know what that feels like as I was seven when we moved from England to Australia. We were called "ten Pound Poms" as the Australian government subsidised the trip to encourage migrants and each adult paid just ten British Pounds.
     
    We came to Australia on a ship called the "New Australia". She had first been commissioned in 1923 and was phased out the year after we came here. The accommodation was minimal, six in a cabin intended for four, men separated from their families, women and children thrown in together for the journey. It took s five weeks from England to Australia and we were really glad to get here having weathered storms, a strike by the ship's crew and a change of destination due to strikes in the area we were supposed to go to.
     
    When we finally landed we were told how "lucky" we were. And I suppose in some ways we were. Australia was somewhere where you could pay off a block of land (50 foot frontage, 150 feet long) and build your own house as an owner/builder. You could still keep "chooks" in the back yard and some people also kept a cow or a goat or other poultry. There was plenty of work though mostly labouring jobs and you could get "credit" or "tick"and pay off your furniture as you earned more.
     
    In the late fifties new subdivisions were springing up everywhere, forming new suburbs and work places moved out of Sydney as we did. People were making a new life here. Communities sprung up all around us as the post-war migrants settled down to build homes and have families. I got use to all kinds of food as I made friends with the new neighbourhood kids whose parents came from many countries, many different backgrounds. I think that is what makes it so easy now for me to slide into conversations with strangers, we were brought up as strangers in our new adopted land.
     
    I went to several schools, had two homes and then my parents made another move, to the Central Coast, three suburbs over from where we live now. More new experiences, more new friends, different takes on life as I first went to the local school and then on to the town high school. Central Coast folk were a little more rural, a little less citified, a little less cosmopolitan. But with the beaches and the lovely summers and the ease of shopping in town or going on to the city two hours away by train it was an acceptable way of life.
     
    Skip a few decades and you can see why we like a solid, unchanging existence. After Ray and I were married we had more changes. Ray changed professions, we changed houses and districts as he moved with his job but eventually we landed back where we came from, back on the Central Coast. We have put down deep roots where we are having been back in this house for 23 years.
     
    But changes are again on the horizon, I have started to realise that the upkeep of house and yard is harder than it used to be. Particularly when storms break up the driveway and flood the back area and I am out digging drains in the middle of the night. Hey! I am not the young gal I used to be and maybe this is all getting too much for me now? And maybe our need to move is being guided also by Ray's needs as he gets less flexible, walks less distance and then only reluctantly sometimes.
     
    Life changes. We move on. Like Kristen's son maybe reluctantly. But in the end there is no reasonable point in avoiding change. It probably will be for the best. But I have to get ready for it a long time in advance. I knew that one day I would marry and leave home, I knew that my husband would dictate that to a certain extent and in a way the stroke and his worsening condition will dictate our next move.
     
    I just hope that when the time comes I will be ready. And like the move to Australia it will be a good move and lead us into new opportunities.
  18. swilkinson
    I'm envying the northern hemisphere folk. There you are revelling in summer and I am looking out the window to a grey sky and yes, it is raining again. Not the drought-breaking rain everyone wants, this is just a thin line of cloud clinging to the coastal fringe. The main water catchment for this area is about 30kms inland and the rain is just not happening there. Luckily today it is just the tiny drops on roof tops, not torrential rain and gale force winds, that is predicted again for Sunday.
     
    I spent part of yesterday shovelling gravel for my driveway. During a heavy storm my driveway gravel rolls away and settles on the far corner where our road bends. My job on the next dry day is to take bucket and shovel and go down and bring it back home. I do it with some reluctance each time. I would love to just ring and order a truckload of the stuff and a roller to pound it down flat, but with my luck the storm the following day would just wash it back down again. Thankfully I am a roadmender's daughter, still keeping up the family traditions.
     
    The other half of Thursday was another visit to the neurologist, this time to okay Ray's Reminyl. It is on the Public Health Benefit Scheme now which means I can access it for a low price but the referral has to come from a neurologist not our regular doctor. He is going to start the process for me and gave Ray two more weeks samples to tide him over. Ray seems much more alert since he began taking it.
     
    Since my birthday my email has gone quiet. I have a regular group of friends I correspond with this way but I guess like me they are just keeping the routine going and not doing anything new and exciting so there is nothing to write about, just a few bits and pieces to forward . So checking the mail takes just a few minutes. Today's mail for me included an email from an older couple telling me of their coughs and colds and another from a male friend telling me he had just been in day surgery for an ingrown toenail. Trivial, you think? Not really, just light relief as he has recently had a brush with prostate cancer. And the husband of the older couple is on kidney dialysis three days a week so a cold has to be treated as serious. Life is full of hazards for the unwary.
     
    Ray has just come home from Scallywags, week 2. He seems okay with going there, had "just a talk with the blokes there" today. I went off to do the week's shopping as that hadn't happened this week. With the torrential rain on Wednesday and driveway repairs yesterday I feel as if I missed out on a day somewhere. So shopping had to be done in my "time off". And as a lot of caregivers will tell you, shopping alone is a lot faster! Trev came too which meant he took the groceries back to the car, he got rewarded with some Chinese takeout.
     
    This is the Queen's Birthday long weekend. Of course it is not really her birthday as she was 80 in April. But this is when we celebrate her birthday. As a winter holiday it is very low key. Some lucky people go to the snow fields, which this year do have some natural snow, and some man-made snow on the groomed areas. When the kids were young we would sometimes do a winter camp-out or go visit friends, usually come back to the coast when we lived inland. So it was a time for catching up with the parents, some friends, just talking, drinking hot drinks in front of someone else's fireplace. This year Ray and I will stay in, read, watch videos, just pass the time if it is all as wet and cold as it is today.
     
    Next week is shaping up as equally exciting. A visit from the community nurse on Tuesday to discuss "continence issues".. Who said life lacks excitement?
     
     
     
     
  19. swilkinson
    :chat: and :beer: and :happybday: and :cheer: :cheer: :cheer: were the order of the day yesterday. We had planned a BBQ at a local beauty spot but the winds blew at gale force, there was a light rain, freezing conditions and so we all finished up here. Not too bad, we are blessed with a family that doesn't mind being squashed in together and so Trev barbecued, seven littlies ran around the place and the rest of us found enough utensils so we didn't have to eat with our fingers. There was plenty of food as everyone had brought some contributions. And a slab of chocolate cake got transformed into a birthday cake with the addition of fancy candles.
     
    It fined up enough for the littlies to tear around outside while their elders watched them from the verandah. I really missed my Mum and Dad, they loved these special celebrations with the family gathered together. I got quite a few presents including a blender and a couple of those little wheelie things that help you move potplants so I will have one for the verandah and one out the back to move pots here and there.
     
    The main party left at 5.30pm as the littlies were tired and irritable by then. I said Ray could have a short nap, had a salad sandwich for tea at 7pm and woke him up at 7.45pm to have some re-heated leftovers. What a nice sound, the sound of silence.
     
    Today ( my actual birthday) has been a bit of a let-down. I had a couple of phone calls early on wishing me happy birthday and then got ready and we went off to church. Seems Ray has urinary frequency today and had an "incident" in church so I hustled him home instead of having a cup of tea. It is getting clear now that he needs to go into Depends for every outing. Even the short ones. Another expense and another inconvenience. I was hoping it wouldn't happen this soon. Guess the road to acceptance stretches out before us again.
     
    I did have one extra present today from the friend we take to church each week. It is really nice to get a something nice"just for me" type present, I love hand cream and shower gel in matching smells, lovely lavender this time. I had a couple of late phone calls too, one all the way from my front verandah as Trev decided to"ring me for my birthday" - bring on the clowns!! :jester:
     
    Coming from a migrant family of two parents, one departed, one demented, and two children I guess it is not unexpected that I don't have a heap of birthday greetings. I am grateful for the few family members who gathered yesterday and for those who rang or have sent the cards that I will get in the mail tomorrow. Thanks too for anyone who posted a greeting, I know that after I go to sleep some of you on waking to the 4th of June on the other side of planet Earth will read that it is my birthday today and send greetings.
     
    All in all it WAS "Happy Birthday" for me. :happybday:
  20. swilkinson

    letting go

    By swilkinson,

    I didn't realise that letting Ray go off into the unknown of "Scallywags" would feel so like waving the children off on the school bus for the first time. We got ready early then he sat on the verandah and waited in the sun. I went into chat for a while, then left Debbie(sorry) to go and make sure we were okay for the bus at 11.30am. Waited, waited, waited. A red car turned into our driveway at 11.55am. A volunteer had come on place of the bus which has gone in the other direction. AAAARGGGH!!
     
    Another technical hitch here is that we are close to the shire boundary which in some ways is similar to the American county line. Different local government areas are under differently (project based) funding which comes through our Federal government's funding for Health and Disability Services. So although the Wyong Community transport comes past the end of the street they can't pick Ray up, he has to go on the Gosford Community bus. So he will come home on a bus that does a trip for about an hour and a half before it gets back to us, it's last stop. At least he will get a tour of the Central Coast. And on a lovely blue sky day like today that should be well worth the trip.
     
    I didn't really know how to spend the time when he was gone. I actually sat at the shopping centre, just a place to be and drink coffee in what is a busy surrounding and did some thinking. I don't mind being alone in a busy place. When I am an old lady with hairs on my chin you will see me there, bundled up warm, talking to my old contemporaries, just like the tables full of older ladies there today. And in my eyes there is nothing wrong with that. I always put down as one of my goals: "to grow old gracefully". I know that might seem woozy to some folk who want to rant and rave into old age, but who wants to be around a person that is snarling at life? I saw a few of the happy smiling ones there today too, just plump and pleasant woman now growing old. I want to be one of them.
     
    And of course I worried for nothing. Ray came home on a little white bus (the fourteen passenger kind) he was helped up the driveway till he reached the railings, the pleasant bus driver said; "Bye, Ray, see you next week." and that was that. No, he hadn't had the complete tour of the Central Coast, instead the bus drivers just re-allocated the load between them and he was the second person dropped. The invisible line had been rubbed out by a common sense approach. And he had had a great time, with fish and chips for lunch not sandwiches!Whew! No falls, no "accidents" just a half day as part of an all male group of younger Stroke Survivors, "Scallywags" all.
     
    So what will I do with this bonus time on Fridays from 11.30am till 3.15pm ? Maybe invite different girlfriends to lunch? Spend some time chatting? Because as much as Ray needs all male company sometimes I also need some female company. Not necessarily tea and sympathy but "girl talk".
     
    Some changes in life free us up to new possibilities.
  21. swilkinson
    I really have nothing worth blogging about, life has been very mundane since I came back from my break. It is funny how soon that "I've had a holiday" feeling works off and I am back to my usual cranky self.
     
    I had another tummy bug. Happily not the projectile vomiting that Tori and then Trevor suffered from but one of those that feel as if someone has lit a fire in your middle and nothing puts it out. To my surprise Trev took to the idea of taking care of me, supervised Ray and cooked his dinner and threw in a lecture to Ray on how he should take better care of me for good measure. I hear all of this from under a pile of blankets stretched out on the sofa. I drifted in and out of life for about 24 hours and woke up this morning to feeling more or less myself. Thank goodness for that. I am never one for taking to my bed so anything that forces me there has to be overcome as quickly as possible.
     
    I did feel thankful today that I could bend in the middle without pain. And so I was able to spend some time in the back garden in the sun and some more time in the front garden moving pots about. So I needed to be able to bend and stretch.
     
    The other event I wanted to be well today for was taking care of Tori. She came at 4.30pm and went at 11.20pm. This is called a "half sleepover". We did the usual things, colouring in, playing some of our favourite videos, we had some of the singing ones tonight so instead of television Ray was forced to watch a floor show of Tori and Granma dancing to various children's songs on the Children's ABC video. Tori's favourite is a rousing version of "Hands, Knees and Boomps-a-daisy" don't know if you are familiar with that but it must look a sight. Best you weren't there, you might have died laughing! Her Mum and Dad and Uncle Trevor went to a Comedy Festival event that was used as a fund-raiser for her school and said they had a good time there.
     
    Ray had the physiotherapist here again today. I am so pleased with her as she "studies" Rays movements to work out what she can do for him and I am sure the fact that Ray hasn't had a fall at all in the past two months is down to her. She really tries to get him exercising and he is responding by actually remembering to do some of the standing exercises two or three times week. He really responds to certain people and yet not to everyone. Luckily he does to her.
     
    Ray is finally going to "Scallywags" on Friday, this is a men's group for Strokies below the age of 65 that he was offered some months ago. We did not consider it appropriate then because he was falling so frequently. There is not a nurse there and he will have to collect his own lunch and ASK for it to be cut up, and remember to take his lunchtime meds, and be responsible for his own toiletting etc. He will be picked up by Community Transport and dropped back home, I do not even have to provide transport. I could worry about all of that but everyone concerned is saying "Don't worry" so I'll try not to. So if you see a short middle aged woman with very chewed fingernails on your travels on Friday, give her a smile, she is probably someone like ME.
  22. swilkinson

    taking a break

    By swilkinson,

    I've just replied to a worried caregiver who is feeling guilty that she is taking a break while her husband goes off with other family members. Ray has just been for his second three day break in a month, a never before experienced event. I planned both my breaks so I had some ME time. And we both reap the benefit of that. Ray comes home from a break where he has had a lot of good food, entertainment, company, to a much rested caregiver.
     
    On my first break I visited a friend for lunch, left her mid-afternoon and drove down and stayed overnight with my sister. We got to have a chat about some of the family matters on her turf, after a meal, when she was feeling comfortable. We got some agreement that way. I spent the second day with her till lunchtime. Then I came back home and did some shopping, then went out with another girlfriend for dinner. The Thursday I spent doing some house cleaning and on the Friday morning Ray was home.
     
    This three days I spent differently. As soon as Ray had gone to camp on Tuesday I set off by bus and train to visit my Sydney family. It took me almost three hours to do an hour and a half trip but I was relaxed when I got there not fraught from fighting my way through city traffic. The last twenty minute walk up two fairly steep hills towing my suitcase was the big exercise but worth it to say I got all the way there without help.
     
    The two nights with my daughter's family allowed me to spend a lot of time after school with my two grandchildren, Christopher who is six goes to the school next door to the Salvation Army College. He likes school but is a bit of a dreamer rather than a high achiever but will make a lot of friends as he is kind and helpful in his attitude to others. Naomi who is two goes to Daycare. She is walking, talking and a loving little girl. I really enjoyed reading to her, playing with her , entering her little world. It really did me the world of good to be there with them. The second afternoon we went to a nearby park and played on all the climbing equipment and it was like the days when I had Christopher here and we just had the best time.
     
    I came home when they went to school on Thursday and went out to dinner with friends last night. It is lovely to just cut up MY food and talk and laugh and enjoy the company of others without having to look after Ray. I wouldn't feel right if I left him at home to go out and celebrate with friends but when he is on a break away and has good care then it is time for me to have fun by myself.
     
    Taking care of another person is hard, there are times when it is full-on, full of worry, stress and plain hard work. If the opportunity comes to have a break and get some of that "ME time" everyone urges you to get, do it. It can only make you a better, more relaxed caregiver.
  23. swilkinson
    A year ago on the 30th May was when I came here. Ray had a stroke on 20th May, only the staff at the hospital said it wasn't a stroke and sent us home at 3am on 21st. I knew it was a stroke, the MRI proved it was a stroke but when Ray and I came home on 21st May 2005 all I knew was that he was weaker than usual, slower than usual and couldn't sit up or stand up without help. Unfortunately after you have had four strokes stroke number five is hard to identify.
     
    When you go into Accident and Emergency (E.R) these day you can be held there for 18 hours or so before your case is assessed to be serious enough for a hospital stay. In A&E on 20th May the doctors all seemed young. Theirs was the experience of the textbook and the computer screen. I remember them asking me:"Has he always had slurred speech? Has he always been paralysed to the same degree? What is new about his condition that makes you think he has had a stroke?" I must have given the wrong answers. Because they sent Ray home at 3am.
     
    "No reason for the stroke, he doesn't drink,smoke, does exercise moderately. We do water therapy one hour a week, get a lot of stimulus in the form of diverse activities.
    After six years we know about medication, healthy eating and how to time our activities so that he doesn't tire out. But is is so easy to get complacent and think we have got it right now so THAT will never happen again. And then it does"
     
    I just cut and pasted that into here, it was my second post, on the topic I posted to say how frightened I felt. It was six years out from his two major strokes and I was feeling frightened again. I asked the neurologist: "If Ray is on all the right medications, if his diabetes is under control and his high blood pressure is replaced by a good reading, his cholesterol is no longer a problem WHY is he still having more strokes?" and of course he didn't know either.
     
    This weekend has been an ordinary weekend for this time of the year, yesterday we did some house stuff in the morning, in the afternoon I was going to take Ray with me to a Fashion Parade but Trevor changed his plans and said he would be home so it was fine to leave Dad home for a few hours as he would be here and Dad would be having a nap anyway and would be no trouble. So I was able to go off alone for a change, the way other women do. I did enjoy the parade of winter wraps and slacks and glamourous garments not designed to keep you warm but they did look so lovely. And I had afternoon tea and chatted for a while and then I came home. And the night of the 20th did not mirror last years but turned calmly into the morning of the 21st with out any trouble.
     
    And today went well too. A winter barbecue after church, with Tori and family and an old friend here, and some chat this afternoon. And then a trip to the park with Tori, again with Ray peacefully sleeping a large part of the afternoon away and Trev somewhere on the premises making sure he was still okay by looking at him from time to time. And me getting tired muscles from chasing Tori and a ball around the park. And having a swing with her and talking to some of the other parents enjoying the almost wintery sunshine in the park too. Just a typical Sunday afternoon.
     
    And now I sit here and I can hear Ray peacefully sleeping and I am thankful that another "anniversary" is over for another year. It is one year on from the last stroke, seven years on from the majors, fifteen and a half years on from the first stroke on 9th December 1990. A lot of things have happened in our lives. A lot of trauma, a lot of weeping and wailing. A lot of struggle to get to where we are today. But we are still here. And that is the bottom line.
  24. swilkinson
    I have not had a lot of times in my life when I have felt as if I couldn't help someone. Even when I was a small kid I was a trier. It used to amuse Dad that I would come up to a log that he had cut,when he was cutting timber in the woods in England and try with all my strength to lift it up and put it in the pile. I would even drag it a little way to show that I could do it. I guess that is why when he was building a couple of extensions to places we lived in he used to call on me to help him. Mind you all that help was paid back in full over our years of building.
     
    Just the last few months I have begun to feel as if my strength is lessening. I am almost 59 so I guess coming up to my senior years but I have always thought of myself as a strong person. Now my shoulders seem to be less powerful and I often find I am struggling to lift the larger plant pots and contents or some piece of furniture I have decided to move. This is a bit frustrating as helping hands are not always available.
     
    A couple of days ago the physio came to put Ray through his paces. I really like her as she is tailoring the exercises to what she wants him to do but also from what he can do now. So she looks at the way he uses his muscles and then thinks of how she can increase his range of movements. Ray seems to be responding well to this and I have some hope that he may even have a few finer movements if he can exercise enough to rebuild some of the weakened muscles in his left arm.
     
    One of the things I want to do is to take Ray away for the weekend using the trains. As pensioners we get reduced rail ticket prices. So with petrol prices rising rail travel is by comparison a cheaper option, particularly long distances. I need Ray to either be able to balance a suitcase in his lap or be able to push one in front of him. I now have a frame that may enable this to happen but we will have to practice with it to see how he manages. Strong though I am I can't carry two suitcases and push a wheelchair, and open doors and find a suitable seat and...the list goes on. Anyway, the point is that if we are going to travel by train Ray will have to help in some way.
     
    A few of our friends have come up with some helpful suggestions. In some cases I should be able to book the luggage so it goes ahead of me. That means I can take the luggage to the station and then go back and get Ray. The PT suggested that I use a backpack for Ray and put it on him so it is in front of him not behind him. This might be okay with a smaller backpack, and that might mean that by using a backpack and a larger suitcase we would have enough room for everything we needed. But then we usually go away with two large suitcases and a couple of other bags. Since Ray's strokes it is impossible to travel light!!Anyway we will work on this and see what we can do.
     
    I am going to Sydney by train next week and spending a couple of nights at our daughter's place while Ray is at Camp Breakaway. It will be the first train trip I have done for a while. I have to go right into Sydney, change trains and come out for about half an hour in a westerly direction. I am sure it will be easy enough and generally railway staff are courteous and willing to give directions. I have travelled by train a lot in my lifetime but not over the past seven years.
     
    So on Monday I will pack a bag and get ready. Ray will still go to Daycare and that will fill out the week. I know I enjoyed the break for three days last week and am sure next week I will too. But I am feeling just a little uneasy about the whole thing. Stepping out of my comfort zone. doing new things, thinking differently about life. Only Granma is going to visit the grandchildren, not Pa. I hope this is not an indication of things to come.
  25. swilkinson
    I did voluntary telephone counselling for eight years, usually once a week for a six hour session. I also was a trainer for five out of the eight years. This meant that I interacted with a lot of people, callers, other staff, fellow counsellors, the newbie counsellors as I helped to train them. Being a student of human nature I found it fascinating that sometimes the counsellors were more needy than the callers. We all were trained and then let loose on the phones. Serious problems were referred on to people with more training, we had volunteers who were psyciatrists,psycologists, medical personnel etc who we could refer people on to. And in extreme cases the police were involved. All of course with the consent of the caller.
     
    During the training courses I did a lot of self-examination and reflection and grew as a person. Some of the trainers stood aloof from the newbies but I never did, it is in sharing that you encourage others to share. I was also involved in the role plays used to demonstrate the way to handle a call. I remember one that involved incest that made me want to rush home and hug all my children to my chest and never let them go. It is traumatic sometimes to step into someone else's shoes even for a little while.
     
    One of the things the newbies were assessed on was how they shared information with the caller. The idea was to establish fellow-feelings without dumping all your own stuff on the caller and changing roles so they had to become the counsellor to your need. Some people were very natural in the way they shared, others seemed to have to learn to do this as you would learn any other skill with guidelines, feedback and in one instance an observer yelling:"NO, for heaven's sake, you're doing it again." which was not one of the recommended methods but certainly made those who were there much more sensitive in their approach.
     
    There is something therapeutic about sharing even a little of your story. We find that here, the relief of putting down in words, as a survivor or caregiver, what has been bothering you for some time. It is great to see progress by looking at an old posting and saying:"Gosh, look at how far I have come!" or even sadly, looking the postings of others whose lives have deteriorated and thinking of the extra time they enjoyed beyond that originally predicted by their medicos.
     
    There is a bravery about sharing that some people just don't have. I guess that applies to some of the lurkers here, they would like to share but just can't get up the courage. We had that in Lifeline too and sadly not all made it from the start of the course on to the phone service. A few were good as conversationalist but lousy counsellors as their story so dominated their own lives that they were not able to look at others with the compassion they themselves needed. Some came back again after a few years when they had learned to handle their crisis or after undergoing some extensive therapy themselves.
     
    It's not easy to maintain a balance in your life. As a survivor and as a caregiver we are liable to be thrown back into chaos at any time. There could always be one more stroke. There could always be a brewing family crisis that turns nasty. As a caregiver I am aware that some people do come to the end of their ability to care for one reason or another. One of the couples we were on the Stroke Ed course with have just split up, despite all the help offerred to *H* she just could not go on. Too much emphasis is put on what you "have"to do as a caregiver or survivor and that can make some people feel unable to maintain the changed relationship. I can understand that and don't want it to happen to Ray and me.
     
    I think that what we did in Lifeline we do a little of here. We share our story when we first join and then add what bits of our story or experience that seems appropriate to boost others onto the postings. There is an interchange of ideas that is therapeutic but there is a harsher interchange that can be harmful too. We just have to be aware of the balance and sensitive to the needs of others.