swilkinson

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  1. swilkinson
    Now Ray has been at Woy Woy for a while I am getting used to the drive there and back. I pass a few suburbs rather than go through them but there is a lot to see. It is as familiar to me as most of the routes of my life having done it so many times in 1999, again for four weeks in 2000 and 2001. There haven't been a lot of changes so I can almost do it with my eyes shut. I keep them open though as it has tricky bits, like school zones, buses turning and a few busy roundabouts.
     
    Today I came on here and talked to some lovely people in Caregiver Chat, had some lunch and went to visit Ray. I knew there would be other visitors as one of his second cousins called to say she and her husband would meet us there. This is a couple we have been involved with for many years and yet sometimes might have only seen them every second year. It depended on where we moved to. She went to the same school as Ray and lived just up the road when he was growing up so they have a lot of shared memories.
     
    I got there first, spent some time repacking his clothes drawer and cupboard hanging space. It is one of those things a wife does, she rearranges the clothes in your closet. It is part of the job. Ray wears a clean outfit every day and every night so there is always plenty of clothes to bring home. That is part of what a husband does, makes dirty clothes so his wife can wash them. I say all of this with a smile on my face knowing some of you will disagree. But that is the way it is here right now. It is the small issues that tell Ray that I love him, clean clothes, a piece of fruit, news of friends and family. It all means much more than a rose on St Valentine's Day.
     
    Then when they came we had a long, long chat. Nurses came and took blood, tested Ray's sugar, filled glasses with water and gave him meds and he didn't care, we just all went on talking as if they didn't come there. Funny how that happens sometimes, it is like being in a special place . Don't know why we hardly experience that feelings other than on occassions like today. Maybe it is because the visitors have made a special effort to slow their day down to our speed.
     
    The rest of the visit after they had gone we just rehashed what we had said and heard. I used to do this with my kids, go back over what had happened. It seems to stay sharper in your mind that way. Ray had had a visitor earlier in the day but he couldn't remember who so we played twenty questions until he remembered it was an old friend a minister from another denomination. Don't know how he found out Ray was there but he just called in for a visit. Ray remembered it was a friend from the past but wasn't sure of who he was. It doesn't matter how hard he tries confusion seems part of his everyday life now.
     
    On the way home I sang a little to pass the time. Traffic was slow in places as the workers made their way home, after five o'clock is busy even on the back roads. As I approached a country village not far from here I slowed as a fire truck backed out onto the road and went off with it's lights flashing. The "tannoy" was still blaring, no-one had remembered to turn it off. Then in the trees on the next block I saw an amazing sight. Two trees were full of "fairies", small girls in pink bodices and tutus from a nearby dance academy had climbed the trees to watch the fire truck go by. In the late afternoon sun their clothes sparkled and seemed to give them a dream-like appearance. How blessed we are to live in a world that is still full of surprises.
     
    Ray is getting better. Today his high armed walker was replaced by a quad stick and he can walk with only one person to assist now and doesn't need another person to follow with the wheelchair. But his sugar reading was much higher than it should have been and he has frequent urination problems again. It is all a process. Healing is the aim, home the destination.
     
    ,
  2. swilkinson

    well slay me a dragon

    By swilkinson,

    Today was not a good day, not a bad day, just a different day. I think I must have been getting complacent about going over to see Ray because today fate stepped in and I nearly didn't get there. I got half way and realised I had left the bananas at home so I stopped at a fruit stall and when I got back into the car, it wouldn't start. ARRRRGHH!
     
    But dragonslayer number one appeared a man in overalls who asked the usual question: "You okay love?" Yes, love was fine, but the car won't start. He used up his expertise and then rang my roadside assistance service provider. Enter dragonslayer number two, a large fellow who did all the tests you do to a car that doesn't go, battery, fuel lines,fuses etc. The car obligingly turned over but would not go. Declaring it beyond his expertise he called in a tow truck. This is free because of the annual fee I pay so no worries.
     
    I do think a tow truck is a wonderful thing, I've ridden in a few over the years and it is always a thrill. There is really something special about sitting up in the front with the car that is being rescued either up on the tray or bouncing along behind. Where are we going? Back to the company I bought it from. Dragonslayer number three is going to his bucks party on Saturday, he happily told me about his fiancee, his wedding plans, where he was going on his honeymoon. Keep the olds occupied and keep them from worrying.
     
    I must say that my motor repairer was less than happy at having my crippled car deposited at their outlet but yes, they do hold my warranty, no they can't get to it until Monday, no they will not provide me with a courtesy car. No dragonslayers here, they probably feed them secretly at night when no-one is watching.
     
    Enter the princess, well my daughter-in-law actually who I rang to rescue me, she phoned my son and between them they took me to Woy Woy to see Ray and home for dinner. Son no 2 brought me home. So I got to play with my grandchildren and some of the tension of the day slipped away. Alex particularly tonight seemed to delight in fascinating Granma. Certainly made at least part of the day seem okay.
     
    While at Woy Woy I did manage to speak to the intern who is registrar for the treating doctor. Seems Ray has quite a few minor problems that they will have to try and fix before he comes home. She said some of it is due to the strokes, some of it due to diet, some of it due to age (HEY he is only 64 please!). I have asked for a family conference next week after I get the car back, I will try to get one of my sons and possibly my daughter-in-law there too as many minds together can think of more questions to ask and take in the information more thoroughly. I sometimes get sidetracked at these conferences and don't look at the "big picture".
     
    I won't get the car back until Wednesday at the earliest so time to call in a few favours. I have had a few people ask me if there is anything they can do so, yes, they can drive me around a bit. And maybe see Ray for a while on Tuesday when I won't get there. I will see how sincere they were when offering help. I know not everyone can help at a specific time but that can be overcome sometimes.
     
    In the meantime I will pray that whatever is wrong with the car is covered by the warranty!
     
    PS Ray was pleased to see our son, not worried about me but glad I had brought clean pajamas.
  3. swilkinson
    It is strange to visit Ray at Woy Woy Rehabilitation Unit. It is like going back to 1999 in a way as he spent so long there then. It is all so familiar. In 1999 he came in on a stretcher and walked out three months later. We know each recovery is a miracle as we know that so many don't recover. They have had people that didn't walk out but were shunted back to another hospital to await nursing home placement. That was one of my fears for Ray this time.
     
    Today Ray had five visitors at once. I took a friend with me. Her husband died last year after a battle with heart disease and then a couple of strokes and a series of TIAs took him into an early grave, he was 73 but had been on forced retirement since he was 55. She is slowly making a new life for herself now. She said she has been shredding a lifetime of accumulated documents related to his illness, all the old xrays, all the old medical reports. This is all part of moving on. She came with me today to keep me company which was nice.
     
    Another couple from our stroke support group WAGS who live close by came in just after we arrived. Bill has had a brainstem stroke so his body sometimes lets him down and he has some difficulty with walking but his mind and personality are intact. He was telling us he had gone fishing and managed to fall into shallow water. He said he had a problem with that as he could either swim or breathe, couldn't do both at once now! He had us laughing with his description of how he emptied the water out of his hollow walking sticks! He has a slow speech but a wonderful turn of phrase and his face beams with good humour.
     
    His wife is a nursing professional so she still works part-time. She went off and got us all coffee. I didn't know that was possible but she did it. We all settled down for a long talk. I could see Ray was having some trouble following the conversation but it didn't matter, he was joining in and enjoying it so much! Then another member of WAGS came and he lit up all over again. It is so good to just sit around and talk - does it matter what about? and just enjoy time with a group of people.
     
    I often wonder why families can't take an illness as simply being a part of a person's life and act like those visitors did today. What is so hard about sitting near a person in bed, talking in a normal voice, maybe making a few quiet jokes, telling some old stories? Ray and Bill's wife had even worked in the same workplace though at different times so we had stories to relate of times there, Ray told a bit and I filled in the gaps when his memory failed him. Hey! it all seemed so perfectly NORMAL!! So why can't his family manage to get together and do the same thing?
     
    We had thunder and lightning oobviously a storm approaching so that broke the party up after an hour or so. Ray seemed a bit tired today too. The walking practice is going well now he said, he goes up and around the corridors twice a day plus his walks to the dining room for breakfast, lunch and dinner. His two new room mates seem okay and have been talking to him. Neither has had a recent stroke though one had a stroke years ago and has just had surgery on one wrist and shoulder as he has damaged them propelling his wheelchair. That is another situation I hadn't thought of before.
     
    The thunder and lightning are past now. We did have a sprinkle of rain, not enough to do more than green up the grass but rain is always welcome in a hot summer if only to cool down the evening air enough so we all get a good night's sleep.
  4. swilkinson
    It finally happened. Last night around 9.15 pm I got a phone call to say that Ray was in the Rehabilitation Unit that produced the miracles for him in 1999 after his major strokes. Then he spent three months there and went from being a stretcher case to walking out on a walking stick. I am hoping they can repeat the miracle and put him back on his feet again for me.
     
    It is 18 days since the fall that broke his pelvis and fractured his acetabulum ( left hip joint) and so far he has had very little practice walking apart from nurses taking him to the shower using a Full Arm High walker, two nurses and a gait belt the last coupe of days. Not an effort wasted but hardly walking on his own. So he has a long way to go but I am confident that the physiotherapists at the little rehab unit can do it. There are still some members of the staff that were there on his original stay and I am sure they will act as cheerleaders and help him to keep his spirits up. That is so important.
     
    This rehab unit was once part of a cottage hospital, now on the Central Coast we have a couple of mega hospitals , two large private hospitals and the little ones are used for geriatric nursing and this one for rehabilitation, mostly of amputees and stroke survivors. There is nowhere better than a little 18 room 4 to a bedroom unit like this to offer inspiration ("there are a lot here worse off than me"), dedication ("come on Ray, you can do it") and perspiration , well it is very hot in the gym with all that effort taking place! I am so glad he is there, now I can believe that he will soon be walking well enough to come home.
     
    By the way, thank you for the sixteen or so people who came to chat Tuesday night. The banner announcing chat sure helped to swell the crowd. I did so enjoy your company and towards the end a real party mood took over. It really lightens my spirits to join in a lot of fun and nonsense and know that behind it are some people with really big hearts offering each other support and encouragement. Good on you people, you ROCK!! I hope the last one out switched off the lights and secured the premises?
     
    The drive over took me 45 minutes as I got to the school safety zones just after 2.30pm, the starting time. I will have to organise myself better in the future. The journey back took me 35 minutes and my heart was much lighter by then. I am going to approach a few of my older friends as see if they would like to come over with me to keep me company. A lot of them like a drive and it is a very pretty drive, if somewhat long compared with the other driving I do. I know a lot of the caregivers here will relate to that. I know it is only for three or four weeks so I will just do it without complaint ( or maybe an occassional vent!).
     
    All the family and friends will soon know he is there and hopefully some will visit. There was a fellow Lion and his wife talking to Ray when I got there. He is our Tail Twister a man given to telling tall tales in order to extract money from us. His opening remark to me is always:"Got anything on Ray for me I could use to fine him tonight?" As a man descended from Irish stock he has a real gift of story telling and tells a joke that can make you laugh without really knowing why. It was good to see Ray smiling and happy after their visit. Like a lot of others we have lost friends and contact with relatives etc due to the ravages of the stoke but some friends have stood by us and I thank God for them all. And for those here who encourage and inspire me so much.
     
    I finally feel as if there is a chance that Ray will recover now, that he will walk and be able to come back home again. It is comforting to have the dreams I have stored dusted off and out on display again. Maybe...too early to say I know. But at least I have some hope in my heart again.
  5. swilkinson
    This morning I woke up, got out of bed, dressed and had breakfast. It wasn't until I got to put the toast in that I realized how rare this is. I did it all in my own timing. When Ray is here I wake up early, do some preparation and come onto Strokenet. That is because I can actually see him from where I sit as there is a connecting door which I keep open a crack. That way I can go in and help Ray up and out of bed if he needs it. So as soon as I wake up I am thinking about Ray. That is my focus for each waking hour.
     
    It is over three weeks now since he had the fall and went to hospital. The first two weeks I was so busy worrying and waiting on this test and that test to see what the doctors were going to do that I hardly had time or a thought to myself. I just kept running. The work at home, the visits to Mum etc were all squeezed in around the running in and out to the hospital.
     
    Those of you that have been on the medical merry-go-round a long time will know that lot of a caregivers time is taken up by thinking ahead. I usually get up reciting: "Today is Monday. Monday is Daycare. Daycare means Ray has to have clean clothes." I then go to the wardrobe and sort out a clean outfit. I put the belt in the trousers, put the clothes down in the order in which Ray puts them on and then wake him up. Get him up, get him breakfast. Remind him to have a shave. Help comb his hair. Get him on the verandah. Listen out for his transport as I do other things.
     
    Tuesdays is a easy morning so I don't wake him up as early, I do some chores and then wake him. In the afternoon we go to craft. Ray enjoys the afternoon tea but I think he also enjoys the happy chat in the background. He reads a book, or pretends to and lets it wash all around him. The old ladies love him, you can tell by how often they pass the cake plate to him!!
     
    Wednesdays is our day at home. This is because when we are in summer I am on the computer chatting to some of you from mid-day on. So I check everything out in the morning in case someone has a new crisis I need to know about, then spend 12noon - about 2pm in the Caregiver chat room. My time there depends on who is in and how late some people get in. It is a good time for me, I do enjoy the chats, particularly when that party mood surfaces and we all get a little silly. I like to think of people leaving feeling happier because they came in.
     
    Thursday is shopping day so we get up early, Ray gets a change of clothes then too as I think he looks better if he is clean and shiny. He doesn't always want to shave but I like him to when we go out. I guess most of us want to look our best, he doesn't care about his appearance, but I do. I want him to look at his best. Ray, because he doesn't get out in the sun much and tan up like he used to do, can look pale, and a lot older than his years too. So clean shaven and shiny is my preferred look for him.
     
    Friday is Scallywags, pick up time just before lunch, so he gets to sit on the verandah in the morning. I get to do my own thing in the afternoon until he is back at 2.30pm. It is only three hours but I can shop for the pleasure of it , or visit a friend, have some coffee at a cafe, do some of the things middle aged women do. It is good to have the feeling of being free to do what you want.
     
    The weekend varies, some involvement with the kids or grandkids, sometimes a drive, church on Sundays.
     
    It is a simple life but I mostly like it. Then there is Lions Club dinners twice a month and then another couple of associations we belong to have meetings too so there are other outside activities that we have that broaden our approach to the world. And the friends who phone and the family dropping by make the bright spots in the week. Especially those little grandchildren, they are such a bonus.
     
    I am writing this now but in the back of my mind a little voice tells me that all this is in the past. Will Ray be able to come back home and resume life as it was when he left, or will he have extra disabilities and not be able to function at Daycare and Scallywags on his own or manage the dinners out? These are questions that only time will address. In the meantime I will enjoy just getting up of a morning.
  6. swilkinson

    small improvements

    By swilkinson,

    There is a light at the end of the tunnel, at the moment it is just a tiny pinprick of light but it is there. Ray is "walking" with the help of two nurses, a gait belt and what is called a "full arm high walker". He walked to the shower and back yesterday ( about a dozen steps each way) and today walked out to the nurses desk and back ( about twenty steps each way). His pain level the nurses now describe as "manageable with mild pain killers" so no more morphine.Yeah!!
     
    I have had some easier days too. I went out to dinner with friends on Thursday night. On Friday as well as visiting Ray I got some housework done before the visit and some shopping on the way home. Yesterday (Saturday) I had some time at home, went to see my mother and on my return did some gardening until I got too hot. Then I watched the "Da Vinci Code" which my son got for me on DVD and then we had a chinese meal. At last, some "ME" time!
     
    Today I went to church and had some time to talk to some of the craft group ladies, they were discussing a luncheon to be held in February with a Valentine's Day theme, must have been on last year too. I missed it last year as it was late March that our old church closed and we joined this one. At last I feel only a little regret about the closing of my old church last year. It is no longer as painful a memory as it was, that real heartache is over. I am starting to feel "at home" at our present church now. Time is a marvellous healer.
     
    This afternoon, after my visit to Ray I went to our older son's place and had afternoon tea, some playtime with the two grandchildren and then stayed for a BBQ dinner. It was absolutely lovely on their back deck and it was a lovely relaxing time. I know they are busy so it was nice they made some time especially for me. Ray had a cousin and her husband visit this afternoon too, they have his father in a nursing home now, at the age of 89 he has "gone in the legs" so under protest he went where he could get the help he needed. So they understand hospital visiting etc and seems quite happy to visit and talk for a while.
     
    It has been a long two weeks, the first two weeks of Ray's hospital stay, the last two weeks of January. I don't know how many more weeks Ray will be in hospital. I am guessing that if the physiotherapist works closely with him this week he may be home by next weekend. I feel like crossing all my fingers and toes but then I would be the one to fall flat on my face...lol.
     
    I feel as if the world is slowly righting itself again. It is always like this with every new crisis. I had a phone call from an old friend who's husband sometimes plays the organ at one of the larger Catholic Cathedrals on the outskirts of Sydney. She assured me that Ray would be prayed for during their Mass this morning. I know he is being prayed for in our church, my daughter and son-in-laws Salvation Army Corps in North Queensland are also praying for him and I know people on this site are too. I am sure he will be uplifted by all of this. And want to assure others that this is all a part of his healing and this sharing in the journey certainly helps my peace of mind too.
     
    Now all they have to do at the hospital is get Ray fully mobile so he can come home again.
     
  7. swilkinson

    decisions

    By swilkinson,

    Today Ray stood up for the first time in eleven days. He still can't take steps, the physio tried but he sagged at the knees and the physio called the nurse to pull the chair forward as he was holding all of Ray's weight on the gait belt. It was sad to see that despite a pain tablet half an hour before Ray was still in a great deal of pain. Even just standing up he was doing what he himself calls:"Waving in the wind."
     
    The orthopedic team, apparently four of them, decided that the hip socket fracture was only minor, the hip was fit for weight-bearing and the rehabilitation, that is the physiotherapy should be started. I am all in favour of that as Ray had been laying down most days and sitting in the chair for brief periods other days.
     
    There is still some uncertainty about where he will go from the hospital when he is no longer regarded as acute care. The choices are two smaller hospitals, mostly used for convalescence or for nursing home patients awaiting placement. They do have some physio and that is good but it is not an intentional program, just to keep people on their feet. I am worried that will not address all of Ray's stroke related issues and return him to full fitness again. That is what he needs to come back home to live.
     
    Ray was inspired by his stand-up and after the physio had shown him some sitting down exercises he could do to strengthen his now very weak muscles he started them on his own. Not the way the physio had shown him but in his own way. Ray always finds a way of doing things, this meant he seized the bad knee with the good hand with a grip on the band holding the AFO on and moved the leg up and down this way. I guess at least he felt as if he was doing something.
     
    He is also refusing the cookies that the good natured catering department leaves at every bedside. It is not shown now that a person is a diabetic ( breach of privacy?) so they leave them for everyone. This and getting dessert at two meals a day has been shooting his sugar readings sky high so I am glad he has made this decision himself. At least at hospital I don't have to be the "food police".
     
    It seems there are decisions to be made every step of the way in this recovery process. Today I have to decide who to ring with updated information. It is okay here and on my email list as a post, blog or email will solve the problem. But then there are the many friends and relatives on phone only that I have to sit down and ring. I think I will ring a few people every night rather than tackle them all at once. I am hoping the news will improve as we go along.
  8. swilkinson

    friends indeed

    By swilkinson,

    The end of week one of Ray's hospital stay saw very little progress made. He had eight xrays and scans of various kinds to get a diagnosis. The hip joint on the left side, where he already has the hip pinned is cracked across. I guess that means an operation but so far no-one has said they will do it. The orthopaedic specialists will consult tomorrow and I hope one brave one will agree to do the operation.
     
    If Ray cannot have the operation we look at the worse case scenario: Ray spending the rest of his life laying in a bed in a nursing home. Of course if by a miracle he can eventually stand without pain and even take a few small steps I will bring him home. I will not put him in a nursing home unless it is impossible for me to manage him here.
     
    We have got to the stage where friends are rallying round. Some phone calls and a few hospital visitors from Thursday onward started to show us that we are not alone in all of this. The messages from cyberfriends here are much appreciated. Each day I go in to see Ray and say X,Y and Z called and send their best wishes, A,B and C left emails, friends from Strokenet say "hi".
     
    Of course a lot of people want to know if there is anything they can do and with the exception of prayers and good wishes there isn't, but it does help to know that others are thinking of us in this time of struggle. Further down the track I will need people to sit with Ray, maybe pick up groceries or prescriptions or other needs so then I will ask for them to do something specific. In the meantime I tell them visits are much appreciated.
     
    I went out to lunch at our son's place yesterday. I told my daughter-in-law I could only stay an hour or so but three hours went by before I went back to the hospital. Today I went in to visit after going to church and then my sister and her husband came and we came back here for a late lunch. It all helps, both to have someone to discuss things with and also to have the distraction. My sister tells silly jokes with facial expressions and actions and today she managed to make Ray laugh. That alone was worth the visit.
     
    I guess there is a situation now that sounds more serious than some of the ups and downs we have had in the past and people do realise that this is a crisis where their support is needed. I hope the prayers etc continue as I am sure this is the beginning of what will be a trying period for us.
     
    For those of you who were fortunate enough to recover from stroke with a minimum hospital stay and a convalescence at home it must be discouraging to hear of the ups and downs some other survivors and their caregivers have experienced. But that is life. No two strokes the same, everyone recovers at their own pace. And the surviving the experience is what counts.
     
    This period of time we'll get through - with a little help from our friends.
  9. swilkinson

    waiting just waiting

    By swilkinson,

    It seems like a fortnight since last Saturday and it is only five days. Ray is still in hospital, still in bed or on the chair beside the bed, still not walking or weight bearing. He is still undiagnosed as the xrays have been "inconclusive". So more tests have been ordered, still a bone density test to go.
     
    Today they had a second try at the nuclear scan but when I asked the nurse when we will get the results she replied: "Thursday afternoon, Friday morning, maybe." Seems it is all done by a private contractor who takes their own sweet time to get the results back to the hospital. How I hate this letting it all out to private tender with no responsibility to patients or management. No treatment till all the results come in and bedrest for a patient who is in a situation of "move it or lose it".
     
    Today when I left the hospital I was feeling really bad, the heat of the afternoon didn't help and then I was caught in a traffic jam caused by road works and so I called in to see an old friend. She was widowed two years ago and is a person who has cared for aged parents as well as her husband for five years prior to his death so she does know how all of this is affecting me. It is good to talk to people who really understand, isn't it?
     
    Ray is laying on the hospital bed watching the tennis, or flicking between channels and not a care in the world. Now he is getting cut-up food and easy to eat meals like mashed potato, pumpkin, sliced beans and casseroled steak the meal he had for lunch today so he is able to eat without assistance. He has plenty of nurses and aids to look after him, his meals arrive at the right time, he has clean clothes brought in by me every day, what is there to worry about? I think the impact of this new disability is lost on him, or maybe the pain killers are fixing the anxiety as well. So he just sits propped up by pillows with a happy smile on his face.
     
    I have cancelled all his outside activities until further notice and as people phone me to ask how he is I am asking for their prayers. Frankly I don't know what to pray for at this time. Healing for sure, I want him to be healed, healthy and pain free. Comfortable nights for him and for me is a given. And patience, I need loads of patience, to deal with staff who seem not to have a clue about the life of a stroke survivor and his caregiver. Maybe it is easier to just hand out the medications than to answer the questions. Maybe they are so used to things taking so much time that they are just content to wait?
     
    I am sick of waiting and yet I know this is just the beginning of the process. Depending on the results of the scan there will be surgery and rehab or just rehab. Depending on Ray's ability to follow instructions and co-operate with the therapists he will have some time learning to stand and walk again. This will be done in a pleasant setting he is already familiar with having been there a few times before and with it all tailored to his pace. Thankfully that will be the case and he will soon be walking well enough to come home. As the event was a fall and not a stroke this should not take as long as previous strokes. Unless of course there is extensive surgery to repair the pelvis. That would make a huge difference time wise.
     
    Whatever happens I know I have to contain my soul in patience. Not a easy thing for me to do.
  10. swilkinson
    I have just posted a call for prayers for Ray because he had a fall today and is in hospital with a fractured pelvis. It amazes me how quickly things change as we were having a very good day in a week which promised to be a good one too.
     
    Ray actually had the first fall this morning, he said he tripped over a cord (which he knew was there) and had twisted around somehow. He had fallen on carpet and was unharmed, maybe just slightly winded. So I did the British thing, sat him down in a comfortable chair and gave him a "nice cup of tea." Half an hour later he was just fine.
     
    We went out to lunch with a friend, down to the sea again, this time a little seaside town. Had a nice fish and chip lunch, well Ray and I shared a big serving of fish and chips and salad, I had the salad and half the fish. We had a stroll around the shops with him in his wheelchair. It was a glorious day with a warm sun and a cool breeze. Even had the satisfaction of watching a fisherman catch a highly edible fish, fishing in one of the channels at the lake entrances.
     
    We came home and while I was unloading the car with *P* the friend who came with us, Ray started towards the back door, took just a few steps and fell backwards. When I got him up he couldn't seem to stand so I took him inside in the wheelchair. I tried to stand him up inside but he appeared to be in pain so I helped him onto his bed and called an ambulance. The paramedics can always tell if there is a need to go to hospital so after examining him and questioning me they despatched him there quick smart.
     
    Upshot of all the tests, xrays etc is that he has a hairline fracture of the pelvis on the left hand side, luckily not involving the hip joint. The plate and pin is still nicely in place, there is no need for surgery. He just needs some bedrest, a couple of days on pain meds and then assessment by the physiotherapists. They will decide if he can come home or needs to have some therapy first. I am glad this decision is taken out of my hands. I think he needs a little physio though I doubt he will continue to exercise once he gets home again.
     
    It is inevitable, given all his conditions that one of the falls will be serious. Lucky this was not a broken off bone or a broken hip, just the pelvis fractured in such a way that no surgery, traction etc will be needed. I can't wrap him in cotton wool. I look after him as well as I can and have to pray continually that no harm will come to him. It is a tragedy that he continues to develop more problems, despite all the medications, good care etc. Now the "mild" osteoporosis may become one more hazard in our lives.
     
    Just keep us both in your thoughts and prayers please.
  11. swilkinson

    catching the sun set

    By swilkinson,

    All of you who have had strokes or care for someone who has know that you can't just rush off and do something on the spur of the moment. Well today I tried and almost made it work. It is summer here, a really gorgeous day today topped about 85 degrees so not too hot. And even late this afternoon perfect weather so I decided on a picnic tea down by the sea. We would buy some seafood and eat at some picnic tables in a little bay about 20 minutes drive away.
     
    Ray got up from his afternoon nap about 5pm, so far so good. BUT he then had an "accident" so he was showered and changed, and already an hour had gone. Not to worry, still plenty of sunlight and still a glorious late afternoon. So into the car and off we go. Got to where I was to buy the seafood only to find the area fenced off, the place had had a fire and a big sign said:"Demolition site. Keep out." Bah humbug, but there is always plan B, right?
     
    Off we went to the nearest shopping centre only to find that just about everything shuts at 6pm, it is now 6.30pm. But there are some shops open so I manage to get enough food together for a respectable picnic, no fish and seafood but some chicken, that will have to do. But as I am loading the car I discover - no picnic set! I must have left that at home! Not a disaster I tell myself. This may not be exactly as I had planned but we have food and fingers were made before forks as my Dad used to say. And we have still got part of that glorious afternoon left.
     
    So back to a place where we can see the sea, where we can watch the changing sky. There are even picnic tables where we can sit and eat our chicken and rolls, our fruit etc. Ever cut up a lemon custard tart with a chicken bone? It is an interesting concept and it worked. Drinks straight out of the container, chicken rolls on paper napkins (serviettes we call them). And the sky went a pale pink and the seagulls clustered around the edge of the table and a dalmatian from the next family picnic over chased them away again.
     
    Ray managed the chicken roll despite his sometimes swallowing difficulties. He enjoyed sights and sounds of children playing on the sand, the few hopeful fishermen fishing from the beach as the twilight deepened. He and I talked a little, but not enough to drown out the sound of the waves slapping on the sides of the tethered boats which bobbed up and down as the small waves rolled into the shore. It was worlds away from our dining table at home even if only fifteen minutes or so drive away. We live in a wonderful area and often forget that tourists pay thousands of dollars to come for a holiday to see something we could enjoy everyday in summer if we just make the effort.
     
    Where there is a will there is a way. If you think of it as compromise it is. But when was life not a compromise, with or without a stroke to complicate the issue? If you think of it as using your ingenuity it is that too. We set out for a picnic, we had a picnic. What more could you ask for?
  12. swilkinson

    local support group

    By swilkinson,

    Ray and I went to our local support group WAGS today. It was a mostly business meeting as they have a lot of funding to spend. The lady survivors have formed a group and are going to have monthly lunches, this will be subsidised as the Friday Scallywags (male) group is. Scallywags starts again this coming Friday so (yippee!!) I will have some time away from Ray again.
     
    The group also planned a couple of informal get-togethers, one will be a day tour, by coach, possibly late March, the other a theatre party to have lunch and then see a production of "Oklahoma" in the theatre in our biggest town. Ray agreed to go to both so I have my fingers crossed that he will be okay on the day for both events. They are also looking to take part in a couple of surveys to help gather statistics on strokes so I guess we will get a package through the mail to fill in within a week or so.
     
    It was nice to catch up with some of the women from the womens weekend held in November again. Some of them rushed over to give me a hug, others hung back, probably because Sue alone is different from Sue with Ray. As we stayed on to lunch in a local restaurant we had some opportunity to interact with a few people also so got the Christmas/New Year news. It is nice to look around the room now and see twenty women I have had some deeper contact with, to remember some of the laughter and tears that accompanied that weekend.
     
    The downside of the meeting was that the person who sat on the other side of me is a man with a real chip on his shoulder. We hear here of people who's stroke makes them angry, vicious tongued unpleasant people and this man is one of those. His wife left him, he was forced to go to his brother's for Christmas and she was there, she is a..... fill in some unpleasant words here. She has taken his money and is now selling HIS car. His voice was quite loud when he was telling me all this and I could see a few people were uncomfortable with it. That is the difference between here and real time. In real time you can't turn the volume down. I hope he felt better for telling me his story.
     
    A dear friend of ours also goes to this group occassionally and she was there today. Her husband has just gone on kidney dialysis, too long a story to tell here. She was looking tired but was happy to say he was able to drive again now and so she has some of her freedom back. She is now acting as his caregiver, she hopes not for too long. It is hard when the one who still needs care has to ignore her own needs and battle fatigue etc to look after a spouse who has not been particularly supportive.
     
    There is an upside to all of this, we have learned, Ray and I, to count our blessings. we are not always able to do this but it is a rule-of-thumb in our lives now. We are grateful that he has lived longer and more fully than was predicted after his two major strokes in 1999. We are glad that although we have had to give up a lot of activities and have taken up some that proved short term we have, on the whole, had a reasonably happy life. We are grateful for all the friends and acquaintances that have lifted our spirits and brightened our lives in some way or other.
     
    One of the things the lady president (stroke survivor) said today really struck me. She said: "It is clinically proven that those survivors who join a support group do better mentally than those who don't." She went on to say that there is no proven statistical evidence for this but neurologists particularly, in questioning patients, are finding a lot of anecdotal evidence that says this is so. I thought that was very interesting.
     
    Our Stroke survivors who have trained for mentoring patients in the hospital system have now done their first few interviews and enjoyed the experience very much. They feel that even though people might not be able to take in all they are told early on in the stroke healing process, having some information left with them helps them maybe at a later date to link in to some of the services they will need. This is a State Health Department sanctioned program so it is being seen as a trial for what may later become a state wide program. Our group was selected to train and trial the program because they are all under 65 and thought to have the capacity, being younger, to implement a program of this kind.
     
    So there you have it. Some moments in our day, a day in our lives. Each day is worth what you trade it for a friend of mine used to say. On my bad days I hope it is not the truth. But today was a good day for Ray and for me.
     
     
  13. swilkinson

    about Ray

    By swilkinson,

    Ray and I went to a funeral yesterday. We knew the widower as he is a member of our Lions Club. Sadly, although we had met his wife it was as a lady in a wheelchair who hardly spoke and never smiled. She had had severe dementia for the past four years. Imagine then how our view of her changed when we heard the eulogies. She had been a Radio Operator in the Women's section of the Australian Airforce in the second world war, had been a department head in a large department store, had run her own business etc. Added to this she helped raise her nieces and nephew as her sister was ill and she had taken over their care for long periods of time etc. Then she met her husband aged 40 and their story went on from there.
     
    This made me think about people who may meet Ray now. How do they see him? We as his family know all the old stories, have known him from his late twenties, early thirties (the kids) his early twenties (me) or since as far back as they can remember (some of his cousins). So his attributes, assets, weaknesses, those things that made him uniquely Ray are known to a large number of people to a greater or lesser degree. Mind you some know little of his struggles over the past seven years as they do not keep in touch with us.
     
    Today's chat I was speaking with mfrank. We talked about jobs and he has a lot in common with Ray. They were both carpenters and then frank was a Wildlife Officer and Ray was a Fisheries Officer here in Australia. Of course they have both also had strokes and both still live at home with a caregiver/wife. That made me stop and think about Ray and how we have travelled together the 38 years of our married life.
     
    When I met Ray he was working as a storeman/carpenter for one of his mates fathers in a small business in the Blue Mountains. He had done his apprenticeship on the Railways ( carpenter/joiner) and then worked a few other jobs before arriving where he lived when I met him. I met him at a dance in a hall not far from where his mother lived. I went to dances most Friday and Saturday nights. Most of these were charity fund-raisers or teen club dances held in local halls. The entry fee was nominal, there was a sandwich supper and the music was from local old-time bands. If I got a lift there and back and had enough to buy a drink and pay my entry you would find me there.
     
    Ray came home to his mothers house most weekends and so we met at the dances. I guess it wasn't love at first sight but we liked each other, danced well together etc. He came home to meet my parents, I met his and we got engaged and then married . We set up house close by to where he worked but the boss got cranky and he lost that job. We came back to the coast, he took work as a journeyman/carpenter and we went on to raise a family. He joined the Fisheries Department and we had three districts in a 14 year period before that job went over a silly political move and then he went back to his trade as a carpenter again.
     
    I think Ray loved working as a Fisheries Inspector more than anything else he did in life. He was good at the job. He could give out a fine and tell the person why they had done something that would spoil the future fishing for others without them getting offended. Sure he had some close encounters with violence and had a gun pointed at him a few times but he came through it all unscathed. He loved the job, liked the people he worked with but the never ending trail of paperwork and the political nature of policing what were sometimes silly regulations undermined him in the end.
     
    Ray was always community minded as were his parents so he joined a service club and that made us friends wherever we went. His handiness with tools made him a popular friend too; windows broken, door won't lock? Call Ray. He always said "Right oh, be there soon." and so he was very popular. We still have friends from every phase of his life. He made them, I kept them by sending letters, making phone calls and now by doing it all by email.
     
    It is not sufficient to say that Ray was/is a good man. He was more than that. He wanted to make a difference to his community. He wanted to be of help to family and friends. Sure our grass would be knee high in our back yard but poor Widow X needed help and off he would go. Got to love that man. And being in the service clubs made a huge difference to our stay in country towns. And through church suppers and other social events and Sunday school efforts where Dads were obliged to attend he also got to know and love God and became a fine Christian husband, father and church helper.
     
    If you saw Ray and I in a shopping centre now, with him in a wheelchair and me pushing it what would you see? Two past middle aged people, one afflicted and the other one taking care of them? I think that is what most people would see. But I and a few family members and old friends see Ray as he always was, the fine man who loved his family and served his community well. I wanted to tell you some of this, rather than leave the telling for the hopefully still far-distant eulogy.
  14. swilkinson
    I told Jean and Bonnie I wasn't going to make New Years resolutions and as I have been sitting here alone the last three hours or so I have been thinking about that.
     
    When I was young I learned to establish goals, long term and short term goals. The short term goals are something I could do in the next few weeks, so get a haircut, tidy out the linen cupboard, reply to all the Christmas letters would seem reasonable goals for the next three weeks. Realistically longer term goals would depend on the availability of money to finance the project, time and opportunity so they are not as easy to fulfill in a realistic way.
     
    Sometimes goals spring out of needs or as the answer to problems. I looked back at blogs from this time last year and found out that I really still have a similar set of problems. Ray is still struggling with continence issues so I still struggle with cleaning up after him, he still has swallowing issues so I try to keep the menus simple but sustaining, this can also lead to a lack of variety in our diet and the need to cook several meals some days when he needs something simple and I fancy something savoury. He still has mobility and sleeping problems so I have to keep our schedule simple and allow plenty of time for him to sleep. I therefore run into problems with afternoon specialists appointments etc.
     
    New problems in the last twelve months include increasing confusion and with it a lack of processing skills. This caused a problem this morning when he managed to spill the urinal on the bed. This he stated , was my problem, as I was the one who replaced the old bed. Sure, blame the caregiver. He then had several problems with the day linked to not processing what I told him and translating it into an action. It is sometimes like having a truculent toddler. Unfortunately he is not going to "grow out of it" as a toddler would. And sometimes my patience is in short supply.
     
    So what would I use for long term goals in this situation? I guess one would be to keep Ray healthy. To make sure he takes his medication, checks with the doctor frequently, does the bloodwork etc necessary for the doctor to have a good idea of upcoming problems and keep them in check. The next one is harder which is to ensure Ray has sufficient sleep. This also entails sometimes turning down appointments at inappropriate times and insisting on consideration of his limitations, such as not being fed sweets at Daycare as it throws his sugar readings out and insisting he gets some exercise when he goes into respite. All this without looking like a controlling, manipulative and aggressive female. Not an easy task.
     
    Then there is taking care of myself. Looking after my own health problems ( like that is ever going to happen!) and taking appropriate breaks etc. It is so easy to give up on this one but I think I am slowly being able to achieve an occassional hour off here and there, even if it is by saying to Ray;"Go out on the verandah and read for a while and I will tell you when you can come back inside". It seemed harsh the first time I said it and he looked crestfallen but I sometimes need the break, to clean the bathroom, change cupboards around, anything where I am going to spread materials around in such a way that I don't want to have him walk through the middle of them.
     
    I managed to have a respite break this year. It was partly because I let myself get to breaking point that I needed it so badly. I get depressed when I am not coping. But it was also due to Ray's increasing dependence on me and his inability to cope with simple problems. I have watched as he forgets simple things like washing his hands and face and checking to see if he needs a shave before going out. Once that was automatic, now it very rarely occurs and I have to remind him. Changing his clothes, remind him, having his glasses with him, remind him. I remind him of every aspect of his day to day activities, not once but many times each day now.
     
    Then there is the family. What a minefield that one is. His family were more noticable by their absence last year. Again. A few cousins and old friends kept in touch, but we buried a few of them too in the last twelve months and I have a funeral to go to on Tuesday and one I should go to on Wednesday but probably won't. "Should old acquaintance be forgot" we sing on New Year's Eve. Well, no they shouldn't, but I can't afford the time to relentlessly pursue them either. So if they contact I reciprocate, if they don't it is possibly goodbye. And a good clean break is often better than something that lingers painfully on and on. Our family support is at about the same level, though my sister minding Ray stopped earlier on this year.
     
     
    And lastly there is the thoughts of change. What will change in the next twelve months? Already our daughterand her family's going north is in discussions about what will happen for birthdays, how we will keep in touch, send presents etc. And our sons job if it becomes permanent as it seems it could will mean he is away from home for a lot more of the week. And what of Mum? A move across the road from the Lodge to the nursing home? Possibly? And the rest of the family? Who knows.
     
    And so this is the basis of my thoughts. The reason behind the decisions I will make. I am not listing them:"I resolve to..." it is not clear cut enough for that.
  15. swilkinson

    Christmas was good

    By swilkinson,

    Yes we had a super Christmas
    Fa-la- la- la- la, la la la la
     
    And it was tiring, fun, full of family and far too much food. So I didn't have much sleep Christmas night and I did have heaps of indigestion medicine and many drinks of water and not a lot of comfort but at least now I feel less like a washing machine tumbling the chocolates, turkey, prawns, chicken etc that I ate and ate and ate. It was purely a self-inflicted injury this time. Is it too late at 3am to repent of all that food I ate that I shouldn't have gone near?
     
    The day started out less than promising, we had some drizzle Sunday morning and torrential rain on Sunday afternoon. I was fearful of my Sydney family travelling mid-afternoon in what would have been pouring rain, making road slippery and visibility bad. As it turned out they managed to miss most of it and arrived exhausted but happy about 5.30pm. We had prepared a lot of food between us, Trev being the chef and me the kitchen helper. I wanted to cook enough food for three days but realised our refrigerator would not hold it all so we cooked enough for a couple of meals at least.
     
    It had been such a hectic run-up to Christmas that it was hard to relax, but I am trying to live more in the moment now as I need to store some good memories so enjoyed the littles ones from both families and had some fun. Our other family arrived about 6.30pm and we had a super king size finger food supper together with lots of fun and laughter. Of course Tori threw a tantrum when Christopher and Naomi got to sleep over and she had to go back home to sleep but her Mum and Dad did want her with them on Christmas morning and she knew we were coming for lunch so in the end did agree to go home.
     
    I had some problems getting my grandchildren to sleep and read a few favourite books, and had a talk. It was well after 10.30pm when they at last nodded off and I knew it was a 6am start to be at early church. My son-in-law sang Christmas carols to wake us up! At least with his good strong tenor echoing through the house we were awake and dressed, fed and watered and the littlies had opened one present before we set off for church. Ray was still only semi-awake but was functioning okay.We had to have Christopher ride with us, couldn't fit the two of them in as we pick up a neighbour too.
     
    Rain was threatening again but thank goodness it was just a little morning drizzle and not another storm to drench us. So when we came home to change it was watery sunshine and by the time we got to our son's place the sun was full out. He has a new back deck and the others helped set the party up there including putting up canvas tarps against another unexpected storm and we were cosy if a little closed in and fed and fed and fed on all the good things provided. The presents we had carefully selected were mostly well received and a couple of them were a real hit.
     
    The Sydney family moved off to go on to the other in-laws, three hours drive away and we stayed on for a while. Alex, also overfull managed to be sick down his Granma during the farewelling process, but that is life.And an arm full of small grandson feels so exactly right sometimes. And he will be bigger and more independent next year so it was good to enjoy it just for that time, knowing that not all good times come again.
     
    Ray and I came home when our son who was on call for his funeral firm had to go and do a "pick up". We got home about 4pm, Ray went to sleep I had to to clean up the house enough to have an old friend come for an evening meal. Yes, the reheated meats and vegetables did go down nicely or would have if our visitor didn't spend fifteen minutes after the meal was on the table watching the "Queen's Christmas Message" but he is an old Royalist and it was an important part of Christmas for him so that was okay. And it was nice to just sit and have a chat and relax without the little ones too. Ray is prone to getting very tired when around them as he finds them exhausting even to watch. But it is a good kind of tiredness.
     
    So here is Boxing Day dawning, another old friend coming to lunch and I hope I am not yawning my head off as he tells us his version of the Christmas Day story.
  16. swilkinson

    overdoing it

    By swilkinson,

    T'is the season to be jolly and Ray and I have been overdoing it. This has resulted in Ray having three bad days in a row. His confusion levels have resulted in us having arguments all three days and I am sick of it. I know he has had strokes and he has dementia but now he is driving me crazy.
     
    One of his new problems is that he can't find anything. If I say; "It is over there." and point he will still walk right past whatever it is he is looking for. It is as if the desired object and what he has in his mind no longer match up. I would say this is a dementia problem. He has just had the dosage of his dementia med doubled but it doesn't seem to have had any effect so far, in fact I would say it has had the opposite to the required effect as he seems more confused not less.
     
    Of course it is the party season and even the few parties and meetings we have attended have gone twice as long as usual so we are away from home more and he is not getting as much sleep in the afternoon as usual. So I am looking forward to the break between Christmas and New Year when hopefully he will be able to catch up on his sleep and maybe have a better focus on life.
     
    Yesterday we went to our usual Lions Club dinner but it was the Christmas version. There was some problems with the numbers so for a while we were at one table and then moved to another. I know this agitated Ray as he hates to have to move, and maybe the bigger meetings now where we have members, spouses and guests are presenting too much stimulus etc and he is finding this over powering. He switches off and then I can't get an answer out of him if I ask a question, he doesn't speak to his table companions etc. Last night it was obvious that despite the festive atmosphere and the wonderful buffet etc he was not happy. I don't know how we will go in future if this does not improve. We may have to give up Lions or attend only those meetings without guests.
     
    He was also confused about what day it was, why we had to go out, why he couldn't just sit on the verandah and said: "You should just go out if that is what you want to do, I don't need to go out all the time". As we had lunch with a couple of old friends and it was for his benefit as much as for mine I didn't take any notice of this and off we went. I think he enjoyed it once we got out but maybe life is becoming a lot more effort for him now. For a man of 64 he acts a lot more like 84 some days.
     
    Today started badly as I overslept. I have been having trouble with an old digestive tract disease flaring up again. It runs in our family, Mum had it and was treated unsuccessfully for ulcers. Anyhow I was up half the night, finally got to sleep long after 3am. So overslept and had to do all the planned jobs at double speed, we had an "accident" because of that, I managed to make a mess in the laundry room which made me further behind etc. I guess you get the picture.
     
    Then my computer wouldn't pick up Strokenet and I missed chat, last time I rang my sister and she contacted Bonnie, this time my sister wasn't home so apologies to all who came on and found no Caregiver host on. We got to the shopping centre late for our shift selling tickets but the people we relieved were understanding. I felt so tired just sitting there, but there was shopping to do when we had finished and by the time we got home we were both too tired and past caring to eat. It is still the "silly season" I guess.
     
    So friends, take it easy as the "silly season" continues. And as your mother used to tell you:"Don't do as I do, do as I say". Don't overdo it.
  17. swilkinson

    the tree is up

    By swilkinson,

    The tree is up. We had Tori for a sleepover and she and I put the decorations on the tree. I had planned it all gold and red (this years colours in the tree fashion stakes) but she went off and came back with some more decorations I had left in the bedroom and started raking though them and soon I had hung up the little drums, the old angels, the golden bells and some very old decos she found that I was about to throw out. It does all look nice and the tattered old tree ornaments remind me that it isn't what we look like that counts, the older you get the more memories there are attached.
     
    Of course in the process a few pieces got broken. Tori says:"Ooops, sorry" without looking up. She is her father's child all over. But that is precious too, to see that the generations don't change much, the way they speak or their activities might seem a lot different but actions and attitudes take a lot of time to overcome and so there are familiar gestures or body language and just that way of holding her head to one side when she is thinking that shows her ancestry.
     
    We invited her Mum and Dad to stay to lunch as well as it is cool and overcast and with the covered patio an ideal day to have a BBQ, not too hot. Trev was awake and amenable so he was happy to do the cooking and I kept the salads and sides very simple. Tori ran around the yard like mad thing as the rest of us talked for a while. Alex smiled and wriggled and let out the shrieks and noises that six months old babies do. Ray and he had some interaction which was good too. Ray can still do the smile, fingerwags and silly sayings that are a familiar part of talking to babies before they can talk back.
     
    When I said "sleepover" earlier it doesn't actually refer to sleeping She was standing at the end of my bed shaking my toes and saying:"Granma get up" at 5.40am. It was light, the birds were busy doing their dawn chorus and so she was up and ready for the day. Thank goodness for that stack of children's videos we still have. Disney Singalongs, Aussie ABC programs, and "The Bear in the Big Blue House" took us to breakfast time. We girls "eat helfy" as Tori says so we had scrambled eggs following by slices of watermelon and apple juice. It was a change from the two quick slices of toast I usually have. In the meantime Trev and Pa got to sleep in. Lucky men eh?
     
    The rest of the Christmas planning is coming on well. I have the majority of the present giving under control. We are not big present givers. I came from a poor migrant background and Ray's family managed to eke out a living of fishing and fencing so they didn't have much extra either so we never learned to spend a lot on gifts. As our children grew up we drew up lists and pinned them on a noticeboard and the kids all picked out something they could afford to give from their saved pocket money and the little extra we gave them. I still buy a toy, a book and a couple of items of clothing for each grandchild. We give them a lot through the year, just little presents here and there, so no need to "buy" their love. The adult kids each have a way of saying:"don't spend too much on us" so we don't. Just some under the tree gifts so Granma and Pa and all the uncles, aunts and whoever is there at gift giving time are not left out.
     
    Today was a fine ending to a busy week. No major dramas, just a series of days we managed to cope with. Next Tuesday I get to take Ray to the doctor for his last quarter bloodwork. Not expecting any surprises, he seems to be okay, sleeping well, walking reasonably well, and unless it is very hot and humid and we do too much in the day, coping with summer. Let's hope it stays that way.
  18. swilkinson
    Today I am having a "bah humbug" day. I am not particularly sick, or overburdened or unhappy, I am just not enjoying my life. Which is quite common for care givers at this time of the year. After all this is when we women are supposed to arrive at whatever the current event is, wearing our best dress, our happy smiles and bearing in our hands the food we have so thoughtfully slaved over in the kitchen. Well, folks, it isn't going to happen like that. Not with a survivor in tow who really should be at home having his afternoon nap and only the thought of those extra "goodies" that he shouldn't eat anyway keeping him from falling asleep on the spot.
     
    Ray has had a few off days, I am putting it down to an alteration in one of his meds, the extra daylight we use up by having our meals further apart, the humid weather over the weekend and the added stress of being out a lot more than usual because of Christmas parties and break-ups. I am still having trouble dealing with his wish to have me wait on him hand and foot after being in respite where 25 paid workers cheerfully hand out food, clean clothes etc even before he could make his needs known. The service here is nothing like that.
     
    Yesterday I took delivery of our "twin" beds. Now these were part of a long process of selection, and right at the end included Ray as I wanted to make sure they were the right size, height, shape etc, that he could get up out of them etc. And in the bedding store he was fine, smiling, getting up quickly and easily, lying down, fine. But as soon as he saw them here at home they were "too high, too hard, too hard to get up off of" etc. Early this morning he woke me to say he couldn't get up off the @#$$$%%%@@ thing. Well he could in the store but that was when he was fresh and trying to impress the lady salesperson wasn't he?
     
    The beds were expensive, if returned I doubt could be replaced before Christmas. The old bed was broken up and lays in the yard in pieces awaiting disposal. So here we are not in harmony. The beds stay, but maybe one of us will go on being unhappy about it. Of course this is partly due, as I've said all along that the marriage bed is associated with the marriage vows in some people's minds. The "till death us do part" comes at us slowly, the separation in small things leading to the final separation.
     
    Slowly now is coming the feeling that marriage/love/ companionship is not what it used to be, that the change from wife and lover, to companion and caregiver, then on to nurse and finally....enough said. Also I would like some concessions made to my frailty as a caregiver and maybe some appreciation of what I do, day-by-day, week in week out, rather than the background murmurings of discontent. And maybe I would also like not to have to think of Ray's disabilities with every move we make but have him as a "normal" husband for a while too. I know a lot of you can say the same. What do you do as the changes appear and there is no "how to" book to buy at the bookstore that helps you make those small decisions, make those small adjustments? And how I get a "lump in my throat" when I see other couples laughing, drinking, enjoying the party, while I cut Ray's meal into tiny, edible bites.
     
    I guess with Christmas "the season of peace and good will" coming so do our expectations of what family means. So as my computer is on and off the blink ( has been ever since the "trojan"episode), currently not picking up my emails and denying me access to chat, even this site sometimes. I asked my two computer-savvy sons to fix it for me. Big job , they cry, pull it all down, download everything, upload it all again, not a problem Mum, just not right now, okay? Naturally they are too busy right now and no doubt will be that way for a while. After all it is the "silly season". I know, I know, they have lives of their own, shouldn't be burdened with my troubles etc. But it would be nice if they helped because I asked for it, right away and at once, right? And maybe there are some other problems here they could work on too while they are at it.
     
    And the bushfires in distant places send their ashes and cinders on the high winds that blow to the coast and affect my sinuses, and the garden is dying because of the drought and the tap is leaking under the sink in the kitchen and where do you get a plumber for small jobs like that? And it probably doesn't help that I am writing in card after card as I send them off to friends: "Shirley, Craig and family are going up to Cairns to live and I will really miss them". And that is so true.
     
    Now is the summer of our discontent, to misquote Shakespeare
     
    Someone tell me about the happy things in life, what I should be feeling right now, maybe that will help. My religious background tells me that these little irritants of life are like grains of sand which polish and bring lustre to the pearl within. But I don't feel a bit like a pearl. Right now I feel just like a small sullen lump of coal, under pressure, sunk in the soil of life. Maybe a few million years more of this and I will be a diamond!
  19. swilkinson

    in praise of Ray

    By swilkinson,

    Ray and I sold raffle tickets in a giant Christmas stocking, at our local shopping centre today for our Lions Club. We have seven four hour "slots" to do this Wednesdays and Saturdays until 20th December.
     
    One buyer, a slight acquaintance from years gone by complimented Ray. He said: "Buddy, you are doing what a lot of able bodied people never do, paying your way in society." I take that point. Ray IS doing what a lot of able bodied people don't think to do, working for others: the blind, the disabled kids, the other members of society who will benefit in some way from the money we raise.
     
    It is not often I say this but I am so proud of Ray sometimes, despite his disabilities he still finds service to others satisfying. And I told him I was proud of him too.
     
    Now I criticise Ray sometimes for the things he doesn't do. I know a lot of them relate to his disabilities, others to his dementia. His thought processing and memory loss mean he is not able to retain a list of things he has to do, so he might change his shirt but forget to shave, or shave but forget to comb his hair. It is up to me to make a thorough inspection of him before we leave home. This sometimes mean we need to change some of his garments at the last minute. Because of that we didn't get to our Lions meeting on time last night and so he sat at one end of the table and I sat at the other. This made it a bit awkward as I had to keep trotting back and forth to cut his meal, butter his bread roll,get him a drink, fetch a serviette, later a cup of tea etc.
     
    One advantage for me was that I got to talk to someone other than Ray. And others got to talk to him. He used to belong to Lions for many years before his stroke and before I joined to be his helper. It is one of the places where he is treated almost as if he is "normal" and I try to make my help as unobtrusive as possible. Last night it became obvious to one of my table companions who said: "I never realised how much you have to do for Ray." For those of you who wonder why others don't help you with your survivor, that could be one of the reasons. It is almost as if by being unobtrusive we are hiding what has to be done from others and the fact that we could sometimes use a little help. But maybe it is better that way.
     
    But this is a blog in praise of Ray for a change. So I want to say how proud I am that he still tries to function in society. I know many people would have given up a long time ago, maybe after the second, third or fourth stroke. But Ray does still try to keep going. He is uncommonly courteous and kind to the older folk we now mix with and got a warm compliment yesterday from one of the craft ladies who said how much she had missed him while he was in respite and how nice it was to "have him back with us again". He is now an accepted member of that group and a common opening of address from our "leader" is: "Now, listen up ladies, and Ray."
     
    He is still very much occupied with reading. But he also likes to sit on the verandah and see the world go by. I posted a picture taken of the view looking down our street in the gallery. It looks as if it is very rural but is actually a bend in the road. It still gives him a lot of contentment to think that he built the verandah on the house himself. As a carpenter he built onto our house three times, making it from a tiny one bedroom "holiday cottage" into the three bedroom house with front verandah and back patio we live in now. It is not a new house in a rich neighbourhood, it is just the house we have lived in a good part of our married life and like us it is comfortable.
     
    Ray is a good man. He was good to his parents. He was thoughtful of his brothers and sisters and still loves them and I am sure is puzzled sometimes that they rarely contact him. He always helped our neighbours and friends and never sought to get anything in return. He is much more likable than the rest of him family, well I think so anyway, and always did have a cheerful view of life. This has gone now, as has his ability to work, do carpentry etc. But I think the essential kindly nature is still there and can be glimpsed in the way he talks to small children, dogs and old ladies. I can understand our daughter praising him for his ability to smile, day in day out, in what must sometimes be a life that skirts the borders of depression.
     
    Yeah :cheer: :cheer: :cheer: Ray.
     
     
     
     
  20. swilkinson

    good times

    By swilkinson,

    Ray and I just had a weekend in Sydney not at my daughter's place but in a hired unit on the same site. We all went down to see her and her husband commissioned in the Sydney Town Hall on Sunday as officers in the Salvation Army. It was a real big deal and we were both so proud of her. We had all our kids and grandkids there too so as a family we really did put up a good show of support. We love them heaps. I have had a struggle accepting that they are going to Cairns (1700 miles north of here) but I think I am there now. I really was able to rejoice with them at the weekend.
     
    Ray enjoyed the weekend, he managed the two and a half hour trips each way very well. Trev drove us down. I was glad as traffic slid in and out of lanes on the busy roads that I was not behind the wheel. He takes it all, honks when honked at, making all the guestures used to express disapproval on the roads these days. You really have to be a road warrior to drive in the cities now.
     
    On the Friday night there was a dinner for parents and each candidate could have a friend too, so we had us, and Craig's parents and a brother from each family too. There were mostly people in uniform , but as Ray and I and Craig's parents are not from the Salvation Army we just wore evening dress. We knew we were being awarded a "silver star" to wear as parents but also had some kind words of introduction written by our children. A lot of us had tears roll down our cheeks as we heard the words they had written.
     
    Shirley wrote some lovely things about me. I will not quote them all as they are not appropriate here but was impressed that she said I was a strong woman of faith, had influenced her Christian journey and helped with her decision to find a worthwhile outlet for her wish to serve others. She quoted one of my favourite Bible verses:"Trust on the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make straight your paths."( Proverbs 3;5-6).
     
    After this she spoke about Ray and some of the struggles that Ray and I have faced since his strokes and said of Ray:"Although life is more challenging for him now, he still goes forward. From my Dad I have learned to look at life as a special adventure, to face each day with a smile and to try to live life as if every day has real meaning." I felt proud of my girl and teary at what she had written abut her father. It is rare that a tribute from a grown up child to a parent is heard this side of the grave and I am glad she had found the words to express what she sees in Ray's everyday struggle to maintain a regular life after so many strokes.
     
    The rest of the weekend and today was filled with family things. It is most precious the times we spend together. Whenever the days ahead are tough I hope I can always recall the memories of these good times.
  21. swilkinson

    on being me

    By swilkinson,

    Somewhere in the last seven years Ray and I got blended. I don't know how it happened as we used to be very different individuals. We had separate jobs, separate cars, separate lifestyles. We kept different schedules, had separate bank accounts and made separate friends. Or maybe I should say colleagues as those I thought of then as friends are not our friends today. We have retained a couple but the rest are long gone.
     
    Then Ray had the major strokes and our world for a while revolved around his medical needs, the hospital, then the rehab and when he came home the medical appointments and the in-house rehab. Now I was required to be his nursemaid, his driver, the housekeeper, the social secretary etc. Those of you who are caregivers will see where all this is going as you have been there. And I lost sight of the "me" I used to be.
     
    I don't think it was anyone's fault, she just faded away. Her time and energy and focus in life was gone. There was little time to be just "Sue" or Susan" nor the career girl, the member of clubs,the member of executives on committees. I was still Mum, Granma, daughter and sometimes even had time to be a good friend. But most of my individual pursuits were given up in favour of Ray and his needs.
     
    I don't think I realised how bad this had become until a past member here started to tell me I was "co-dependent". Now I don't think I ever was but I had assumed that the blended role that I had taken up when Ray became more in need of my services was the only role there would be for me now. And somewhere along the line I had lost the personality of the person that I was and was weakened because of that. The thought of the independence I had lost sometimes built up resentment, anxiety and even in some cases, anger. I had become almost solely Sue, caregiver to Ray and I was not entirely happy with that role.
     
    My time on this board, reading , educating myself on strokes has shown me different approaches to caregiving. Even in extreme cases it is possible to be a caregiver and not actually lose your whole personality in the process. My time alone recently confirmed that I needed to look at this aspect of my life. I knew that away from Ray I felt a whole lot different about life, functioned differently and approached life differently. Also other people treated me differently, more like they used to when I was an independent working woman.
     
    Now I have Ray back home I need to implement some changes so I don't lose this advantage. I can't let the strokes and Ray's poor health totally absorb my energies. I need to keep some in reserve for being simply myself. I don't have a workable plan to accomplish this yet, I am still working on it, but I hope now my life has turned the corner and there will be some new ways of looking at life in the time ahead of me. I don't want to think this will diminish my role as Ray's caregiver, just that I can be Ray's caregiver and still be myself.
  22. swilkinson

    tired already

    By swilkinson,

    It's only been six days and I am tired already. Having Ray come back home was a big adjustment for us both. We have lived together for 38 years, the last seven of which I have been a full-time caregiver for Ray. It was marvellous how quickly I took to jumping into the car whenever I wanted to go out, choosing what I wanted to eat and when and having a full bed to myself! It was like the doors of the cage had opened and all the world was mine. Not anything like it is whan he is home and fully my responsibility.
     
    For him because he had had a staff of twenty five looking after him and all the others ( it is a 80 bedroom hostel) and that meant someone checking on him all the time. His medication, meals, snacks and drinks all appeared like magic, his bed was made, room cleaned, towels changed, even better than a high class resort. And there was entertainment, bus trips, and a couple of special concerts. It really is a great place to be for many of the oldies there. That is the ones who have decided for themselves that this is what they want. Apparently a few are still stuck in "when I go back home".
     
    For those of you who have never had a break I know this must all sound very self-centred. I realise I was lucky to have the freedom, if only briefly. I do feel much rested, but sleeping with someone who has clonus ( a very jumpy left leg in Ray's case) who groans and moans in their sleep, gets up five or six times through the night etc. suddenly seemed to limit the sleep I was getting. So today we went out and I ordered our new twin single beds. It was a very expensive exercise but if it will help me to have a good night's sleep and wake up rested and refreshed then it will have been worth it.
     
    I think I dealt with all the issues that arose when I first thought of us in "separate beds". It has taken quite a while to fully decide this was the next move but I am happy to have made the decision now. After all the angst it was actually breaking one of the legs off our old marital bed that brought the decision into the present. It was a kind of "burning your bridges" I guess and hopefully we will still remain in the same room for a while and this will just be part of the process of change and one we have made as a free choice.
     
    I met a couple of people while I was out shopping today, both fairly recent widows and this brought another issue into focus. Most of the time I can ignore the problems Ray has in addition to his stroke deficits, but as one woman talked about her late husband I realised that a lot of what he had was similar to what Ray has now, only Ray's is at an earlier stage. It is hard sometimes to face facts, I am very good at kidding myself that all is well in my world. But medical facts somewhat complicate that optimistic view of life.
     
    I'm thinking that although we don't celebrate Thanksgiving in Australia ( it is peculiar to USA) maybe I could sit down and write out a list of things I am thankful for. Our earliest colonial settlers were first imprisoned and then emancipated convicts who had been transported from England and Ireland and didn't have a lot to be thankful for. Our latest arrivals, most of whom have come from some war-ravished country could sure use some time to think about their thankful list though. I guess everyone gets tired of the most recent migrants wanting the lifestyle of their new country to conform to their expectations? We do.
     
    So I am tired, not only because I am getting disturbed sleep again but I have to pick up where I left off as far as looking after Ray goes. It is not just doing all the housework, yardwork etc, but also knowing I am again full-time 24 hour caregiver to Ray, fighting for his right to care and all his other needs to be met . Medical appointments start again tomorrow with a visit to his local doctor, next week is his neurologist, then blood work etc. I sure got back into that fast, didn't I?
     
  23. swilkinson
    I can't believe how quiet it is, the cars are gone from the driveway, the fold-down bed is packed away, the sides are cleared of bottles, plasticware and food. The family have gone home. It has been a wonderful family weekend.
     
    This is one of the last times our Sydney family will be here for any length of time, they came up to do the service at their old "home corps" this morning. They came up yesterday afternoon and we all had a BBQ dinner together early and then talked until late. The little ones were good, estatic to be together again. They raced around the place and drove each other into that state of over-excitement that results in tears and tantrums at bedtime.
     
    The two brothers, the sister, the in-laws ate and talked, ate and talked. They were all so happy to be together. I think we are all so aware that this close proximity with Shirley and family is coming to an end as they are now going to Cairns the first week in January, and over the Christmas period time flies apace.
     
    This morning even the unchurchy Trevor went to be a support group down the front as Shirley did the service and Craig gave the sermon. My theologically trained brain did pick something here and there that could have been improved but they are still in the "learners' class" and will improve with experience. I am not a "stage Mum" but would have prayed that something liike this would happen. And despite everything that has gone wrong in our lives it was worth coming to this day. And who can resist a Salvation Army band "oompa-paaing" with all it's might on a bright Sunday morning?
     
    Ray was home which meant an extra load on me, but it was good to to enfold him back into the family again. He was quieter but followed all three of his older grandchildren's every move and was constantly remarking on how Alex, the baby, has grown. He is a proud Granpa, just doesn't have the words to express his love for them these days. And I am sure he is as loving towards them as he ever was.
     
    The three younger grandchildren ended up in the Crying Room this morning, mainly to have a snooze (Alex) and play with the toys (Naomi and Tori) Christopher remained attached to the uncles he loves so much.I took my turn with trips to the toilets, to get a drink for one of them, a hanky for one of the others. That is what Granmas are for. And it is a delight to be able to do it too.
     
    This afternoon after lunch we packed our gifts to them, much needed kitchenware, a "new" dinner set we had bought and never used, glassware, even some Tupperware, all will help to set them up to provide the hospitality expected of them as leaders of the new community they are going to. And it is nice to think of them eating off the plates and drinking from the glasses we have been able to provide. It is more blessed sometimes to give than to receive.
     
    And now they are all gone, back home, back to work tomorrow. But what a joy it was to have them with us. We will be back together for their commisioning in a fortnight's time when they will become Captain Shirley and Captain Craig. And then we will spend some time together around Christmas and then who knows when? I like to think sometimes my glass is not just half full, it is running over, and this weekend has certainly been one of those times.
  24. swilkinson

    friendships

    By swilkinson,

    During the weekend away there were many discussions. My room mate was a marriage celebrant but had formerly had a job which included counselling. She is a widely read woman and produced our wedding skit. At the end of the weekend she also produced a two page document for us to take home. It is to help us look at our relationships.
     
    I with many others here have a great deal of angst about the changing roles of relationships in our life post-strokes. This can apply equally to those who have had the strokes and those who care for them, and to a lesser extent to family and friends. When someone has a traumatic event in their lives relationships change. In some cases different people start to emerge as friends, old friendships break down, even marriages that seem rock solid can break down. Diane's theory didn't address this issue but explained relationships in an interesting way.
     
    Working on concentric circles she classified the outer circle as strangers, those people we meet but briefly, say hello to, or a few sentences more and they leave our lives. We have these momentary meetings every day, in the shops, in the office, at the doctors. You can't go through life without them unless you are a recluse and just get your needs pushed through a slot in the door.
     
    Then comes acquaintances, these can be from a brief period of encounter or someone you see regularly but never seek to have a friendship with. I see the lady in the greengrocers once a week, I have seen her for maybe four or five years, I know her name is Fay, she has a sick mother, a son who gives her some worries etc. I have a similar relationship with my lawn mowing man, some of my neighbours, even some of my relatives, they have never become more than just someone I meet occassionally for a brief exchange.
     
    Next comes casual friends. These may also be colleagues, someone we see on a regular basis like fellow travellers on our transport route, someone we know quite a bit about, who we like and keep in contact with yet have never made them into a close personal friend, these can include our golf partners, other school mothers, closer neighbours etc. No-one knows why these perfectly lovely folk haven't come into our inner circle but for some reason they haven't. We usually have heaps of them.
     
    Next comes family and close friends. These are the people we can usually rely on. They form the foundation of our world, they are usually our parents and grandparents ( or grandchildren), our children,siblings, uncles and aunts, cousins etc. They may include old school friends, next door neighbours, people from among our colleagues who we now confide in and value as a friend, someone from a club we belong to that we now bring home on a regular basis, people we ring more than twice a week. Some people can juggle a few friends and a large family but most of us can't and keep that inner circle small. People who think they have a huge number of friends may be mistaking casual friends for close friends or lumping them all in together.
     
    Now she put Lover/Soul mate. I don't think I want to elaborate on that one. But some of you have a person that fills that role.
     
    Then comes Spouse. For some of us didn't marry the lover/soulmate but someone else. According to some traditions this is the accepted order. The spouse has a different role in the scheme of things.
     
    Then the centre of the circles is Ourself.
     
    Now her theory to right relationships is that people can move in and out of these circles. That slight acquaintance may be your future best friend, that best friend might move away and turn into a casual friend.People important in one part of our lives may later again seem just acquaintances.
     
    One the exercises we had to do was to think of ten names and put them in the right places on the circles, then add another ten and so on. The result can be astounding as with one's first thought they can obviously fit in one place but on further thought seemed to fit better somewhere else.
     
    So when a life changing event like a stroke happens we need to sit down and redefine each person's place in the circles. Our former best friend might not want to see us in pain, suffering, despair, ill health or whatever we are going through now. But *X* a casual friend from work, or golf or church, may step forward and become part of the inner circle, an encourager, a friend in need, a person of such strength and compassion that they become a true friend.
     
    What I have written here is only a rough outline of what she had written. I hope it is enough to whet your appetite and help you to look at the changing relationships in your life with renewed interest. It is okay to redefine who people are to you but remember you might be changing in their view too. A person we value as a true friend might see us as a mere acquaintance or vice versa. Life is not always going to make perfect sense as we all know.
     
    But anyway I hope this has given you food for thought.
  25. swilkinson

    21 wonderful women

    By swilkinson,

    I have not long got back from my WAGS Womens Weekend Away where I spent the weekend with 20 wonderful women, 21 there counting me. It was at a motel complex just down from where my son lives. I thought it would not be very glamourous but instead it was marvellous. Once inside the resort area there were green lawns and pergolas and a pool and little balconies with golden cane palms and for almost the middle of a small city it could have been deep in the country. The rooms were adequate, we were all "twinned" so many stayed up talking well into the wee small hours. The meals were very good, and we were so nicely waited on, all paid for and no tipping please, so apart from drinks from the bar no money needed on site.
     
    The organisers had asked us all to bring a bottle and munchies so both afternoons from 5pm - 7pm we had "Happy Hour" with nibblies and drinks. I think this was when I learned a lot about the other participants as they talked freely about their lives, their families and their circumstances. Support was asked for and given but not in a superior way but rather like we do it here when we ask in our postings: "My survivor is doing this, has anyone else had any experience with this?"or "I am feeling this and this, is that normal?" More than a few tears were shed during these sessions but the two or three "clowns" in the group soon had us laughing and in a good mood again.
     
    The company was fantastic. When I was told it was a mixture of caregivers and stroke survivors I was a bit unsure of what we would all talk about. Well mainly we talked about the problems of being women in a world that had suddenly changed. The range of deficits was wide from those who had had slight strokes ( or cared for someone who had) to one lady who brightened our life with her constant witty remarks yet needed a lot of help and arrived in a wheelchair that various volunteers pushed her round in.
     
    The women with slight deficits told how they faced everyday the question: "Now you are back to normal why do you still go on about having had a stroke?" and "When will you be going back to work now you are back to normal?" and the answers that I have become familiar with here, because of fatigue, memory problems, I can't drive, I can't stay awake long enough etc.
     
    The caregivers to those with medium to severe deficits expressed the nature of their lives now, the limitations, the financial strain, the lack of community support, the fear of a poverty-ridden old age. I told some of them about this site and how it had helped me through the rough patches by knowing I was not alone, by being able to come to chat and find someone else who was struggling with the same problems as I am. I also expressed the benefits I have found with blogging, that I can keep an online diary where I can put into words how I feel, and how by looking back on what I have written after the passing of time I find I learn from that. I also mentioned how supportive you all are to me here.
     
    All the women seemed to express in some form the loss of friendships, close family ties, their career opportunities , loss of future expectations etc and how they were coming to terms with that. The tears flowed then to as some expressed for the first time in a safe setting how they really felt as opposed to what they usually said:"I'm fine thank you." We also talked about the changes in lifestyle necessitated by the strokes. Some were themselves aware of their own prejudices towards those with a more severe/less severe form of stoke to themselves and said that being together in a group such as this enabled them to see things from another's point of view.
     
    And just in case you thought this was all gloom and doom and not much fun, you should have been there for the "mock wedding" on Friday night which was three hours of hilarity, the massages on Saturday morning, the "water ballet" on Saturday afternoon, the wine and champagne parties and the fun at mealtimes. There was also the "real wedding" we were able to see as that was booked at the same site but in another accommodation block but took place in "our" garden. Thank goodness the bride and groom, both second -time-arounders, were good natured and amused by our enthusiasm for the event and happy for us to stay and watch.
     
    If you ever get an opportunity to go away with a group of stroke survivors and caregivers you may not have as much fun as I did this weekend, but at least give it a try. All similar learning experiences stretch us as people, enable us to see into another's life and benefit from that, and help to build friendships that given the right environment could last a lifetime.