swilkinson

AnnieJay, Ray and I are Lions too. I joined in 1999 after Ray's two major strokes to be his driver as he could not drive and as he had been a Lion for 17 years I didn't want him to have to quit at that point. Must say I do enjoy Lions and although we are not very active members we do what we can. Congratulations on all you have achieved. It sounds like you are making new improvements weekly now. Some achievements seem small but really improve the quality of your life. You just need to keep on keeping on. :You-Rock: Sue.

I have gone back to photo scanning to make the post-funeral PowerPoint presentation for my mum. I thought I would do this while she is still alive as I am sure I couldn’t be bothered when I am in mourning for her. It features photos from every section of her life, the oldest dated 2nd August 1925 when she would have been seven. She is still well, not speaking, mostly sleeping sitting up in the “loungeroom” with the other ladies. The aides say that occasionally she participates in an activity, shakes a rattle to the music program they do Tuesdays and Thursdays, plays with items stitched to a felt tablecloth, runs strings of beads through her fingers. It is so minimal her activity now but in the severe stages of dementia that is how it is. She was “asleep” on Tuesday when I was there but she has a thickened drink and I fed it to her on a spoon and although she appeared almost unconscious when the spoon touched her lips the mouth opened and she swallowed it down. It is the interest in food that keeps you alive towards the end, the good eaters survive longer apparently. People ask me why I still visit as she doesn’t know me, has not said my name for probably three years or so, sometimes doesn’t even acknowledge that I am there. I go because I love her, want her to have the best life possible and know that by visiting her the aides etc get to see her more as the person I see her as. I know that doesn’t make sense to a lot of people but it does to me. Ray and I have had a good week. I say now that that just means there has been no major upsets only the kind that I am used to dealing with. Ray has no infections and so his behaviour is in the normal range. I think it helped that our daughter and her family came as the fact that they had not visited us in a while may have worried him as much as it worried me. We all know families can get beyond being interested in their oldies and decide that “out of sight is out of mind” so it worried me that they stayed away so long. Our daughter was going to ring with some dates we might like to go down there but that didn’t happen so I am wondering if they really want us to visit again. I hope that it just means they have been busy this week and it slipped her mind. No major events this week, we did go out to lunch on Thursday, which was nice. The last Kids Club this week so I get three weeks off and Ray gets to sleep Wednesday afternoons for three weeks. I love the kids but they are really manipulative and often disruptive, disorganized and down right rebellious to I often come home feeling as if I have wrestled with alligators not just played handball in the yard and organized craft activities for a dozen or so 5-12 year olds. Lets say winter is still lingering. Last night it was down to almost freezing again. I had to go and find my hot water bottle, which I had packed away. I wish spring would actually get here. I planted out a few herbs today, I have plenty of mint sprung up already, parsley, oregano and still a few chives but they are weedy and need replacing. I’ve just planted out coriander seedlings and some chilies because although I don’t like them the boys do so I can give them away. I planted out some lettuce seedlings too but usually lose them to the snails. I don’t have the heart to kill off the snails with pellets so will have to be vigilant. I love the birds being so busy this time of the year. They fly through our front verandah narrowly missing us sitting there, it is scary but hilarious to see Ray duck when they are long past him. I am trying to sit out with him a little time each day although I am often busy with chores inside. As a caregiver I can be too busy doing things FOR him that I fail to do things WITH him. Tomorrow Trev is looking after Ray for a few hours while I have lunch with some of the Stroke support group caregivers. They go out every month but since it has mostly been Sunday lunches and I go to church it has been a while. I was pleased they decided on Saturday lunch for a change. Trev has done a few little things for me this week. He is a good son. Not perfect but pretty good, like the rest of us.

:hug: Sue

Bruce, we will be thinking of you. Would one of your kids or one of your friends post the message for you? Or maybe you could borrow a laptop and post from the hospital? Most hospitals have a way of giving you access to the Internet If not ringing someone on here who is close by and getting them to post would be the next best thing. Sue.

Quite the little all rounder your Tootie. I am amazed by how many different sports she is able to join in now. Kudos to you and her family for enabling her to participate in all of this. Keep up the good work Tootie. Sue.

Yep, fatigue, or in my husband's case massive fatigue is a feature of post-stroke living. One of the leaders of our Stroke Recovery group here on the Central Coast did a paper on that at the last Stroke Symposium, so doctors are aware of the problem but as yet have no answers for it. Ray used to sleep up to 16 hours out of 24, cut back to 14 and now about twelve. It is still a major part of his day. He sleeps usually 2pm - 5pm so any activities have to be based on morning hours. I do take him out to a couple of afternoon activities as I as a long term caregiver have to have a life too but I notice he doesn't function as well the following day. Sue.

We had a visit from our daughter and her family, they left home at 2pm yesterday for what should have been a three and a half hour trip but with Friday night traffic going into the city and the” weekenders” leaving the city to journey up here to the Central Coast and beyond it was five hours before they actually got here. Trev and I spent two hours yesterday morning getting what used to be his room tidy enough for Shirley and Craig to sleep in, with me getting bedclothes assembled for the sofa bed for Christopher and tidying up the front room for Naomi as well. It is strange how we leave the big clean-up until a few hours before our visitors arrive so when they come we are almost too tired to appreciate that they are here and we have time to talk, interact and catch up again. We went out to dinner, an ordinary enough meal but we were eating out together and that counts. And then time flew and it was time to put the littlies to bed and go to bed ourselves. Shirley was tired, she did three funerals last week and Craig also did one. They get called on when the family wants some religious imput but doesn’t really have a religious affiliation. They try to make it a good experience for the families but it is a hard ministry. This morning seemed to be all about cooking, first I cooked a Saturday morning breakfast, corn fritters, eggs and bacon and lots of hot buttered toast. After breakfast when we had a little chance to talk it was time to assemble the salads and cook the hot vegetables for the BBQ lunch for Ray’s birthday. We’ve had so many BBQs in a row it was hard to make different salads for each one but I managed to do it. Shirley, Craig and kids plus Lucas did a walk up a nearby hill to see the view, to point out the flora and fauna unique to this area, to enjoy the spring blossoms. Then they walked down to a local park and the kids played ball games and used the park equipments, more bonding time for the kids. Wish I could have been there but someone has to stay with Ray. We banned the trampoline as Alex is still recovering from last weekend when he caught one of his toes in a spring and then had his sister jump on him and injure his foot. We'll never know how these things happen as the kids reports were garbled and frankly unlikely but it cost Pamela two days off work as Alex could not go to preschool with a swollen foot. It was good of Trev to come back over and work on the swing we had been promising the kids for this visit. He worked on it all morning and finished it just before it was time to BBQ. Must have been built strong as even the adults got to try it out. Did the kids play well? Yes and no. We had the usual tales…he did this, she did that. The little ones tried to keep up with the bigger kids and tripped over their own feet. They tumbled and fell down the hill, they cried and cried, then picked themselves up and went on with their games. It was the usual kind of day in any family reunion time. It was just so nice to be part of the busy, noisy, family atmosphere. It’s usually much too quiet around here. I’m thrilled they took photos, I might get some nice ones of the little ones together. There was a coolness between Edie and Trev and I didn’t offer to buy into it. If a relationship is to survive they need to have their battles and get over them on their own without parents butting in on the argument. We will see how it goes. Lukie of course is oblivious to this so went on being his usual irritating, loveable self. Just as well kids don’t realise what is going on most of as the time or we adults would spoil all their fun. We had a good BBQ, the lamb was superb, the steaks were tasty and the sausages were gone too soon. The salads were mostly eaten and the follow up of cake and coffee seemed to be okay too. Just a little time of talking, washing up etc and then it was time for one family to go back home. As busy Salvation Army officers they cannot at this stage be away from their Corps for too long. As it was they had several phone calls from folk who didn’t realise they were away. It’s a strange feeling, you are tired and want the peace of having your own home back in your control but miss them almost as soon as the car is out of sight. It was late afternoon so Ray trundled off to bed, Trev and I cleaned up and the visit was all over and everything packed away until the next time. Miss you Shirley, love you little family. Ray coped okay. I wouldn’t say he did well, as he got irritated with me a few times for “telling him what to do". But with all the changes in walking spaces etc because of the sofa bed being out and the mess in the kitchen from the extra food being prepared and the kids running through the house and under everyone’s feet it was definitely harder for him to plot a course for himself. The event was put on for his benefit, so everyone could be together to celebrate his birthday but I don’t think that registered with him at all. Ray is losing his awareness of what is happening around him and why now. I know we hold these family events to try and rekindle our relationships and to help the little cousins to relate to each other. I wonder if that is what will happen? It seems we become more and more isolated as the generations change so is this like trying to stop a runaway train? I’m hoping it does make it easier for little cousins to turn into adult cousins who enjoy each others company and endeavour to keep in touch. Being a migrant child I never had the experiences I am hopefully giving to the next generation.

Boy you deserve a medal for all of that. Ray had his in hospital so I was spared the preparation. His was clear too. They were looking for a source of blood loss but never found it. The endoscopy I wouldn't advise because with Ray's it did something to his swallowing and his was on thickened fluids for eight months after it. Glad to see you back on here, I was worried about your non-appearance. Silly me! Sue.

Fred found this in a site about kangaroos: Most people think kangaroos are endemic to (live only in) Australia. In fact, several species of tree kangaroos and forest wallabies also live in Papua New Guinea. Apparently tree kangaroos do jump from one tree to another and have flaps like a 'glider' that help them take what are really great leaps rather than flights. Interesting eh? Sue.

:dribble: ya think so mike? :roflmao: See you in chat. Sue.

Ruth, if the tiredness and depression continues see if you can work out what has changed. Ray and I did the pool for two years, then one morning he got cold going from the pool to the car and refused to go any more. I regretted that I didn't push ahead and go anyway but I didn't. I am glad hat you and William are getting out and about quite a bit. Keeping out in the community provides stimulation and stops that isolated feeling from taking over your life. Good for you, enjoy the hot tub and the lunches and all your other outings. Sue

On Saturday we went to a 60th birthday party. It is the turn of the season so a heavy sweater didn’t seem appropriate. We had to wear something pink as it was a “pink party” so I bought a pink blouse on Friday and when I got it home and tried it on with the jacket I wanted to wear it with - CLASH - so there I was with no clothes to wear! Tragedy if you are a woman. In the end I found a couple of things that were pink and sort of went together so I was sorted. PHEW! So why do we worry so much about our appearance? At my age it is probably because I want to look “nice” not sexy or film star glitzy, just nice will have to do. I want my clothes to match, each other and the occasion, and to look as if they belong to me. I know I am not good looking now, though I once was, so I want to look attractive, so people still talk to my face instead of behind my back “oh the poor …whisper…whisper”. We had a good time at the party. Nothing went wrong and there were people there who wanted to talk to us. A distant cousin of Ray’s was there and came over to exchange news. He stopped me on my way past his table and asked me did Ray have dementia? I said he does. He was polite and said that Ray looks good and I must be taking good care of him. It is the usual reply. Yesterday was Father’s day so the boys put on a BBQ, well Trev did. Steve was alone again so I guess that is the pattern now, Steve and the kids visiting “his” Mum and Dad. Anyway we had fun. Nice food, the little ones mostly played well together, the older two even went in and talked to Ray for a while. That was yesterdays rule: “it is okay to go into the house as long as it is because you are going in to talk to Pa”. Ray has suddenly decided he can’t sit outside if it is “cold”. This doesn’t mean of a low temperature, it usually means windy. So yesterday he sat inside as he had done on Friday when the wind was blowing and some of this morning. This is a real departure from him always wanting to be on the verandah doing his word puzzles so I hope it doesn’t last. At least when he is outside he is engaging with the passing traffic, waving to passers-by etc. There will always be some changes with Ray. The MRI showed massive changes in the brain. He seems to cope very well with life considering, said the neurologist. Yep, most days he copes so most days I cope. Then we go through some more changes and I start to struggle again. I have been looking forward to Spring when I hope the warmer weather will bring some positive changes, longer days, more access to pleasant places to spend our time. Hopefully there will be more BBQs, picnics etc. Unless the wind blows and Ray finds it too cold… I have just lost my “grandmother” well Mum’s step-mother actually, only five years older than Mum and she died of bronchial pneumonia in England on Thursday night. A distant cousin emailed me and then Mum’s “sister-in-law” phoned me. Although the step-mother never thought of us as part of her family Mum’s stepbrother who lives in Queensland always called Mum his “little sis”. He is in hospital, fairly seriously ill so his wife contacted me on his behalf. It was a nice thing to do and I appreciated that. Last night I talked to Ray’s older brother’s wife for about 1½ hours. She gets frustrated with her husband as he is slowing down, partly age, partly recovering from lung cancer chemo, partly natural cussedness. She rings and asks me how I am and then tells me how she is for the rest of the call. She is past retirement age but still works, I think to support their lifestyle as much as any other reason and to stay out of the house. Like a lot of people she knows that eventually she will have to sell up and move to suburbia. This morning for most of the morning I repotted plants and got them back into their positions. We had gale force winds overnight Saturday night and some of the plant pots rolled down the lawn dislodging the plants and scattering dirt, one or two cracked so I just repotted and replaced. I have a heap of bromeliads to split and repot, they just love it here and grow and multiple like rabbits. They are lovely leafy plants but they take up so much room! I’ll have to give some of them away. So why was I thinking about appearances? Well in 1980 I met the American Ambassador to Australia on a river bank in the outback. We had a conversation about the river flow and water problems and what was grown locally. We had gathered to watch a re-enactment of the landing of Charles Sturt an explorer who was credited with the discovery of the plains around Narrandera, the town we lived in back then. We knew there were to be some dignitaries coming, the mayor, a couple of politicians, those kinds of people. We had come early as we had someplace else to go. When the official welcome was made by the mayor he welcomed the American Ambassador Philip H. Alston and it was the man in the white shirt and trousers held up with braces who had been strolling among the crowd talking to the farmers, their wives and the local community. No airs and graces just a middle aged man who slipped his jacket back on and came up to the platform to thank the mayor for the welcome. As we say here: “just like ordinary folks.” So I guess it doesn’t really matter what you look like. It is what you are inside. A nice man with a warm smile and a soft accent, I think from Atlanta, or close by there. A nice man who was interested in the folks around, what they did, how they lived. I have never forgotten him. People in that kind of position are not always as easy to talk to as he was, or as ready to just take an interest in wherever they find themselves to be. I looked him up and he died in 1988. A long time ago but this morning I remembered him. So when our time on earth is finished who will remember us? And why? Maybe because we stopped for a while and treated them like people who were interesting and worth spending some time talking to?

Ruth, raining and ugly really described the day here too. I am not taking Ray out in the rain if I can help it. His new Friday carer said it was too cold outside this morning so they sat inside. Ray prefers outside. I actually had a nap this afternoon, I intended to do some house cleaning but decided I needed to look after myself better. I want to shake this cold off and feel WELL again. I think that is going to be my aim for next week. A good friend is urging me to re-organise my time so I actually use my three hour respite for "me" time, not shopping or doing chores for Ray. I will try to heed that and think of more things I can do to relax and enjoy spring and summer. Sue.

Sara, I always used to use the phrase: "you can drive when the doctor says you can", did this for two years then the neurologist finally told Ray he couldn't drive...what a dreadful blow that was to him too. It is not easy dealing with a person with denial as you cannot reason with a person that is being unreasonable. On the other hand this has been a difficult change for him as well as for the family and so far he is probably just defending his right to his freedom and his former way of life so just be as understanding of that as you can be. Sue.

Welcome to the blogworld Paws. I am sure as you read more and more you will get to know us better and as you blog and post we will get to know you. Being a caregiver can be a lonely and difficult journey but as there are two of you you can lean on each other. Do take care of yourself and your partner as well as your care recipient. You need to go the distance too. Sue.

From time to time we reach some sort of turning point and I realise that something that was once easy for us to do as a couple is no longer possible. I guess with spring now approaching and seeing summer ahead with all it’s enticements I am again listing what Ray and I can do and what we can’t do. And I sit here mourning the losses and sighing with relief that some things are still possible. The Apex40 Club we belong to is going on it’s three day excursion at the end of this month to an area close to where Ray was brought up on the Hawkesbury River. Prior to his strokes Ray would have been the one insisting on a boat for a river trip, getting the rods ready for the fishing and sorting out the camping gear. Now we are not going at all. Too difficult now for us to go camping, not much better in a cabin without the proper disabled access,definitely not good running the wheelchair over uneven ground, up and down river banks etc. There are so many reasons why we are not going. And it is so sad that this so close-to-home experience is not accessible now. I am not sure we will be doing much in the way of going to the beach, enjoying evenings out, sitting under the stars at the end of a BBQ with friends etc this summer. Ray is very much like your average 80 year old now, fond of his own home, his own bed, his own routine. At 67 that is not so good for him and for me at 63 even worse. I still want to swim, walk, drive, holiday, explore new things. I still want to be surrounded with laughter and good humor and have some fun! It is too early for me to take out my teeth and put them into a cup at night, I am not ready for that yet. So do I get morose and full of self-pity or what do I do? Well, eleven years of caring and counting I have done a lot of “giving up” so I should be good at it. I have done a lot of adapting to circumstances, putting Ray’s needs first and finding a “new normal”, but that doesn’t mean I am happy about it. So thinking local and shorter expeditions is probably the way to go. We can still enjoy summer, we just need to put some planning into how much we can do and do it in the mornings when Ray is fresh and more alert. So our “days out” will mean a trip to one of the beaches or lakes nearby, a walk along the shoreline pushing the wheelchair, a cup of coffee instead of a picnic. Our evening entertainment will be a BBQ with family in the backyard rather than a night out, with Ray having access to his own bed when he wants to go there. And maybe I will catch up on those girlfriends when I can have Ray in care for a few days. Okay, it is not the high life, but it is a life. Give a thought to the long term caregiver, the marathon runner of the caring business who battles the seasons and the elements to keep themselves and their care recipient sane and in good heart. It is not an easy job and if you can lighten the load in any way please do so. Because we are survivors or caregivers ourselves does not mean we can be oblivious to the needs of those around us. Here we smile at the other caregiver who pushes a wheelchair past us, acknowledging we are part of the same kinship group. I open doors if I can or offer to take a trolley back to the bay for someone older than me who is struggling. I need to feel as if I am lightening the load for someone else in addition to dealing with my own load as well as I can. So if you are changing from summer to winter or winter to summer you need to take a while to look at the season ahead and see what you need to do to make the time ahead easier on yourself and better for the person you care for. It is the planning now that will make the time ahead easier to deal with. And although we will never have it easy, easier is better. We talked about some of this in chat tonight and probably will some more in weeks ahead. A few different opinions, some handy hints and help sorting things out make life much more do-able. Just as many hands make light work so many opinions give you a range of options to work with. There is a lot of life ahead for Ray and I still and we both need to be able to enjoy it. If I make myself a martyr that will not work out well for Ray either. So hopefully I can gain his co-operation too as I plan for spring and summer. I want summer 2010/2011 to be a good one for us. We may sit on the beach but putting our heads in the sand is not an option. The caring ostrich needs to keep the head up and the eyes looking ahead.

Hi Barron, welcome to our blogworld. Here we are a mix of survivors and caregivers so by reading the blogs you get a glimpse of many worlds. I hope you feel glad to be alive most of the time. As a third of those who suffer strokes die and a third are seriously affected after a stroke, those who are on the computer here are the lucky ones. Lucky is a relative term of course..so work your way towards what you want to be, exercise, practice, think positive and work at recovery as you would work at a job. My husband Ray had had five strokes - 1990, 1999(x2) 2001, 2005 so he has spent a lot of time battling the deficits. Now he is tired and mainly sits and reads, does word puzzles etc. It is sad that at 67 he lives more like he was 87. Hope you start getting those positive vibes back that made you a success at real estate. Sue.

We had a lovely sunny weekend, on Friday the temp was warmer than it has been for a while and I got to sit out in the sun in the afternoon and warm my bones. I will be so glad when the cold damp weather goes as today the rain and cloud cover is back and it is markedly chilly. I spent the morning doing housework and then provided a lunch of soup and bread rolls for my sister. She called in on her way to another appointment Yep, the cave bears are out again. I hadn’t seen my sister for a while as she had had a whooping cough virus and I had the bronchitis for four weeks. I usually see her a few times through winter but not this year. She has four children,all married, has ten grandchildren, is into PalTalk and Facebook and has a wide circle of friends with whom she goes to lunch etc. We are similar in looks but very different in the way we live, and that is okay with both of us I think. We had three lots of visitors on Friday, my four monthly friend from down the road came up for a visit, an old friend from the other direction and then my son came to drop off my grand daughter and finished up staying for dinner and going home about 9pm. That was the longest visit for a long time so I guess the spat is over, at least as far as he is concerned. His two little boys ran riot as usual but he and Trev washed up and tidied up some so it was not a lot of extra work for me. Having my granddaughter here was fun. We went to the church fete on Saturday morning. She is so good at spending my money she makes me seem so generous…lol. We enjoyed the lemonade the Kid’s Club made, the scones with jam and cream the Fellowship group made. For lunch we had the sausage sandwiches the Men’s Fellowship (which technically Ray belongs to) cooked out in the sunshine. BBQ …yummy. Mind you I just had egg as usual. We had Lukie over to play with Tori on and off during the weekend. He is very loud and I think Tori got sick of that. She likes to come to Grandma’s for the peace and quiet and that was in short supply this weekend. She came to Sunday School and we had nine other kids as well so it was a busy hour or so. It is amazing what you can make with colored cardboard and some drawing pencils. The lessons determine the craft but each week is a unique time of creating and “owning” the craft of the day – no two alike! We did have a lot of fun with the Wii too. I had about five months when I did not use it at all and now I am back to doing sports and fitness programs again. I got a nasty shock getting on the board and getting weighed – where do those extra pounds come from? Best get active again or the spring blouses will not button up...shame on me! And on Sunday evening back came Tori’s beloved Dad and the little boys and this time we had a makeshift dinner of processed chicken burgers and spaghetti after some homemade pumpkin soup that Edie and Trev had made. It was a good fun time of fellowship and laughter and reminiscing so well worth the effort. We don’t do that often enough now. So if the bears are out of the caves I had better review the winter wardrobe, throw out some past fashion faux pars, brighten up the lipstick and powder and get my “summer look” going. Well that is a bit of fantasy but you know what I mean. I need to cast out the winter woollies and winter blues and get ready for spring.

You post so positively Ruth and that is very encouraging to me as in our position I find it hard to be positive all the time. The Stephen ministry is a good idea, I read a bit on the website: "Stephen Ministries is a complete system for training and organizing lay people to provide one-to-one Christian care to hurting people in and around your congregation." I used to do home visits and take communion to shut-ins as part of my pastoral ministry 1996 - 1999 in the Anglican (Episcopalian) church. Home communions with a regular visitation by a licensed layperson is common here but a service often not thought about in a situation where stroke or another illness makes church attendance problematic. I'm glad you were able to tap into this. Hope William keeps improving for you, making your caregiver role easier to manage. Sue.

We too like to have our grandkids stay. It brings some young life and noise into the house. Our granddaughter is coming over for the weekend on Friday. I am glad things are going well for you. It is a battle at first but nice if things settle down and you feel you are coping again. I love the idea of a three day weekend once in two weeks, certainly great for summer when you can take off for a spell. I enjoy reading your blogs. Sue.

My health has settled down a bit here and I am coping okay. Not much help when I was sick but as the “strong woman” I am not considered in need of help. As the helper to all and sundry I am always the giver, not the taker. In our friendship group everyone is a well-wisher but no-one actually wants to do anything hands-on. The ladies with a casserole that once came to a household where there was sickness are a thing of the past. Life moves on and progress does not necessarily build community. I have found my energy again so I am back in to working in the house and the garden and willing to jump in the car and drive somewhere if I need to. With winter still here I am not sure I actually want to go out at night as yet but last night at the Lions dinner I noticed I was happier to be in a social setting again. The family is unaware of how much effort it takes to look after Ray with the exception of Trevor. I am trying not to put any extra on him now that he has a partner and a step-son to look after, I appreciated his years of being our back-up person but now he needs to re-structure his own life. We all need to have those good middle years before taking on the care of ancient or decrepit relatives. Because we had some survivors “visit” in chat today we were talking about going back to work. When Ray had the 1999 strokes we gave up three jobs, he worked as a carpenter and I worked as a government worker three days a week in Pensions and two days a week in a parish as a kind of welfare officer. So the strokes took us both out of the workforce. It is over eleven years now since my official resignation, a lot of lost years and lost income. I have had the painters here on and off for five weeks, an unusually wet winter meant that the five days or so they had planned to be here turned into five weeks. They are gone for four weeks and then we will have the rest of the interior painted. That is a huge job and requires me to do a lot of sorting and packing as a lot of our storage units need to be moved. Another mammoth task for a caregiver to tackle, so will break it up into manageable segments and ask for help if I need to. I know when the painters were doing small repair jobs Ray must have cringed at the workmanship. Ray was always very precise and as a trained carpenter and cabinetmaker his joints were always perfect. The painters sort of did the job, not dainty work by any means but at least the repairs were done. I could never have afforded someone of Ray’s skills to do the work. I still hanker after having him back to being my handyman again. Oh for a time machine or a magic wand! I do appreciate we are in a better spot than most. We had savings designated for our retirement and a small pension payable after invalidity and with a top up from Ray’s government pension we have managed very well. I am not mourning the money lost, what is the point of that? I am mourning the passing of an era – our working life. So I need to get on with living now. I am a great admirer of Sarah (spacie1) and her ability to get Gary out and about and make their summers memorable. I am held back I think by the way I see things as obstacles rather than challenges. In the early days (2002 – 2005) Ray and I used to do holidays by coach but then he slowed right down the result of the 2005 stroke, or maybe the cumulative effect of all five. For three winters we were able to go to our daughter in Northern Queensland for holidays but now she is down south of us so winter holidays there would be even colder than if we stayed home. And she lives in a two storey house with guest accommodation downstairs and it is not as convenient as when we were all on the same floor. And Ray has to be dragged up the stairs so all round not as good. When my parents were older we used to take them on holidays with us. There would be seven of us, Ray and I and three kids and two older folk. It was always Dad’s idea and he and I would work on the itinerary. Mum never wanted to leave home but we would convince her it was only for a few days. The holidays varied in length but Mum cheered up after few days and things got better. Dad just loved the holidays and Mum was happy with the family around so he got to enjoy the time too. The next few weeks are a pivotal time as we change seasons, spring runs into summer then autumn and back to the cold weather. I hate the really humid days of summer but prefer the heat to the cold. I just need to look at life realistically and work out what is possible with Ray this coming summer. I want a holiday but don’t know that that is feasible for the both of us. I am reluctant to start taking a holiday by myself but I know a lot of caregivers do when the person they care for is easier to care for at home than away from home, which is the stage we are coming to now. All decisions we make as caregivers are hard ones to make. Early in the timeframe it is about the recovery of our care recipient, then it becomes about maintaining what they have gained and now in my case planning for care in the future. I say the future as I am hoping we can plateau here for a while. At this stage I can almost maintain Ray with the help I am getting – a little more help would be nice though, taking some of the strain off me. My crystal ball is broken, my teabag doesn’t leave tea leaves to be read – guess I just have to take it a day at a time and see what the future brings as usual.

Wishing and hoping and planning and dreaming, I know that is part of a song but don't remember which one. It certainly describes my attitude the first two years of Ray's recovery after the 1999 strokes. The PT, OT etc did pay off and he did get back maybe 80% of what he had been - minus the ambition and the ability. He did learn to walk slowly with a stick but driving was vetoed at the end of the first year and I don't think he ever recovered from that. Driving was so part of how he defined himself. It is not easy to adjust to the "new normal" and acceptance comes a fair way down the track. Maybe Bruce is sitting there wishing etc that he will wake up and things will be the way they were and watching TV passes the time. Ray thinks it is "my job" to look after him, once that was the norm. You are doing well getting Bruce as much help as you can. He is responding to the treatment and exercise and maybe will get more back - minus the right arm. Even that may improve. After a few years Ray could hold his left affected arm in a cup shape and carry things in it. Keep on doing what you are doing. Sue.