swilkinson

Susan, you have a very sensible approach to all this and I commend you for it. In the 4 1/2 months Ray was in hospital and rehab after his two major strokes in 1999 I did what you are doing, planned and executed all the work that would be needed to bring him home. Of course I found later that in some ways I had not forseen how much care he needed but that was okay and we made some adjustments. At this point he has been home 9 years and almost three months so I must have done some things right! Just keeping Jackie in the loop without weighing her down with details is the best. Sue.

'Don't worry about the world coming to an end today...it's already tomorrow in Australia ' (Charles Schultz) It is strange how much time we waste worrying about tomorrow - not necessarily the day after today - but all those days ahead of us still shrouded in mystery. I am one of the worst offenders as I am always worrying about what is to come, sometimes to the extent of spoiling my enjoyment of today. So one of my New Years resolutions will be: ENJOY TODAY. Today is Tuesday but not craft day as everything is in recess until the second week in January. It is also not Lions dinner tonight - same reason. So after the shower nurse left I took Ray to visit Mum in her Dementia Lodge. She was sleepy today, apparently all the residents are after extra visitors came to the Lodge for Christmas and also last weekend as some family members made their annual pilgrimage to see Mum or Dad who is in the Lodge as part of their annual holiday trip back to the coast to join up with the remaining family in the familiar old places. All the residents, I am told, are confused when unfamiliar faces and voices are around although people like me who come regularly just blend into the background. Also their routine breaks down as the volunteer groups are also off on their annual summer pilgrimage to friends and family and so no singers, no-one playing the organ or piano, no-one playing games or bringing in the pets as therapy dogs, just the silence and the boredom and shapeless day after shapeless day. Which is fine for those who are content to sit in a comfy chair and snooze but not so good for those who like to have their days filled with activities. We left Mum and visited Ray's friend Claude and he caught us up with what he has been doing. He left the hostel on Christmas morning and went to friends for Christmas Day. The hostel allows people leave for up to 60 days per year to go wherever they want to go. I guess if you are able to go away for too long you don't really need to be there. That is why at that level you can still enjoy the company of family and friends whenever someone is able to pick you up and take you the places you need to go. I keep telling Ray it is not a prison, it is just a place where people who need extra care, more than can be provided by the person they live with, go to keep safe and well and enjoy a few extra years. Don't know if I have him convinced as yet, but I am working on it. After spending some time with Claude we went over to the shopping centre and did some shopping. It was crowded, noisy with tourists, people aged from nought to ninety and more, but we managed. I always find some quiet spot for us to enjoy a cold drink, we always meet up with old friends and have a chat, we often this time of the year see people we haven't seen for a while, like we did today when we bumped into a couple who used to be involved in Scouts when our kids were young. It occupied twenty minutes or so catching up on their news. This afternoon Ray is snoozing on his bed and I am here typing away. Trev has just come home from work, with a few bits and pieces from a stop at the shops, some veggie plants as he is experimenting with what will grow here right now and we just had a chat about his day and whether or not he is getting Friday off etc. He says he'll have a cold drink and may spend some time on his computer. So why am I telling you all this? Because if you had asked me yesterday what was going to happen tomorrow I couldn't have told you all this. But on the downside I got an email to say an acquaintance ( and email pal) lost her husband to cancer and dementia on Christmas Eve and her son just sent me the news, and in a phone call about ten minutes ago another friend's daughter told me her mum is back in hospital again, for a pacemaker operation this time. I guess every day will be a good news/bad news day.....

Bart, we have a saying over here: "Don't drive mad." Too many accidents are caused by people who drive while angry feelings rage through their bodies and make them into careless drivers. If you get angry do whatever calms you down, find a quiet place, play some music, drink a few glasses of water, veg out for a while. DON"T DRIVE! Family caregivers like me find it hard to switch roles, when I am doing everything for Ray I am "Nurse Susie" I am not the loving wife. When we are happily sitting in our easy chairs watching tv or sitting on our verandah sipping tea and watching the world go by THEN I am the loving wife. Don't know if this applies to your situation or not. If Ray "died" it wouldn't make me happy, what makes me happy is for him to grin at me and say: "Thanks darlin" when I do something for him or " I really enjoyed that" when I make a special effort to cook something nice. We wives don't need praise all the time but for me I do like recognition that I work really hard to make our life together work and to keep Ray healthy. Sue.

Jan, you have such a heart full of love. I am thankful you found this site as you will be a blessing to many. Welcome indeed Ryleigh Olivia to a place full of love, your family. Sue.

Vix , sorry to hear of all your woes. We build so many expectations into the Christmas season. In 40 years of Christmases together Ray and I have had a few forgettable ones so I guess you and Greg will have some too. Just make summer into a season of interesting things to do and waste as little time as possible arguing. Life is too short to waste time on hurt pride and such. (((Hugs))) from Sue.

MC, tell her: "Seeing is believing mother dearest." I have a sister like that too. But I say: "Whenever you're ready, just give me a phone call first in case I've had a better offer." she gets the message. Act cool MC even if you don't feel that way. (((Hugs))) from Sue.

Bart, that is fanastic news! Christmas is about peace and reconciliation and the forgetting of family disagreements. Good to hear it is working out for you. Remember to go easy on yourself and on them, the joins are fragile after a breakdown in communications and we need to tread carefully so as not to break the threads. And wishing you a happier New Year and all good things for 2009. Sue.

MERRY CHRISTMAS TO ALL AND A HAPPY NEW YEAR TO COME. Well Christmas Day is past. All that shopping, cleaning, worrying that: "Will this one like this or that one like that?" is over for another year. Thank goodness. I love Christmas but the build up to it drives me crazy. I think this year everyone was pleased with their gifts and that makes life pleasanter. I hate that sigh that some people give when you give them their present or when they roll their eyes as if to say; "What IS this?" None of that happened this year. This year we had the 18month old Oliver and 2 1/2 year old Alex enjoying Christmas at a fast and furious pace. We cried: "No Alex, don't Oliver" to no avail as they did what little boys do - run riot. The presents got the paper torn off them before the receiver had a chance to unwrap them, they found the food before we got to them etc. It made for a very highly charged Christmas Day but we survived it and are all still friends and next year they will be one year older.... Our minister at church started his sermon with a story: "I was talking to a member of the congregation last year and he said; "Christmas isn't the same any more, you spend all that time shopping and then get really silly presents yourself. I don't think the food is as good, the bon bons don't contain any decent jokes and after lunch no-one wants to spend time with you watching a movie or playing board games with you." And he was just eleven!" The gist of his sermon was that we needed to remember the "gift of poverty" that comes to us every Christmas. There are many in our rich society with little food or earthly goods, who make the most of what is around them. The stable for a birthing room, imagine the smell! if you have ever been in a cattle barn you will know what I mean. And the visitors - a bunch of smelly shepherds. The kings or whatever you would call those foreign strangers, came much later. So we are called on to be poor in the sense that we treat whatever gifts we receive as a bonus. We don't exchange gifts, we give and sometimes we receive. This all makes sense if you are a mature adult ( old) like me. I spend weeks trying to get the right gift and get some really odd ones in exchange. But over the years I have used, worn or roasted in or ironed with most of them...lol. Today when I went into the dining/living room I packed most of my gifts away: a ceramic planter with cacti I put on the kitchen shelf,a Christmas plate I still have to buy a stand for, the Santa photos I put in an old frame. The step ladder Trev bought last week I have already used to fetch the decorations down from the top cupboards and the dress I chose and Ray paid for will be my party special for this summer. The northern family haven't sent their parcel yet so we wll have more to open in the future. When I sat down for breakfast my plate didn't sit straight so I moved it and there was a plastic dinosaur. I think it came out of the Christmas bon bons, but not mine as I had a lobster on a key ring. So someone had put down the dinosaur and left it behind. It gives me something to play with I guess...lol. And something to think about to. The value of the little things that amuse us and help us keep our sense of humour when the going gets tough. Ray survived Christmas Day though I think the noise was a bit hard for him to take. He had some family phone calls and we rang one brother who had been away for the day. Our daughter rang late in the evening and told us a bit about her day, it was very hot and humid there so they had hot food, cold wilting salads etc, shared with Craig's mum and brother and another couple from the church. Salvation Army Corps officers are suppose to have any corps members who are going to be alone to dine with them on Christmas Day, it's an old fashioned rule and probably not much adhered to today but another reminder they are called to help the poor. We are not poor, we have more than enough to cover our basic needs. We are rich in friends and companions on the journey including those well-wishers who will read this. Bless you all.

Fred, this morning at church we had a sermon on the incarnation, God is with us, in our pain and sorrow, in our happiness and joy. Some people are just blind to the joy that Christ and Christmas can bring. We had our sons, daughter-in-law and grand daughter Tori, and grandsons Alex and Oliver here today. Those kids are so full of life, energy and promise. I pray for them everyday that they will live life right and seek to help others to do the same. Enjoy your Christmas, think only on the good things and pray for all those who you know need prayer right now. (((Hugs))) from Sue.

Gary, thanks for keeping us updated on Kyle. Darlene seems a very good mother and a great support for Kyle. I am sure she will be right beside her son through what may be a long recovery. I've known mothers like her and they are worth their weight in gold but as caregivers they need a lot of support to stop them from being burnt out. Enjoy the festive season, I don't know if you celebrate it or not but however you spend it I wish you all the best, compliments of the season as the Irish say. Thanks for your efforts in pointing us outside our own little worlds, we get hung up sometimes with our own small problems and need to be constantly reminded that others are struggling too. (((Hugs))) from Sue..

Well, the holiday is over for me, and work starts again with Ray back home again. The Tuesday shower nurse has come and gone and Ray went straight out to sit on the verandah. All is well in his world when he is out there doing his word puzzles. I guess it is the one thing he really misses when he is away from home. Yesterday I finished putting up the last of the Christmas decorations before going and picking him up. As usual the bag was only half packed, clean clothes among the dirty ones as he had packed the bag himself. It is good he has the motivation sometimes to do something for himself. I'm not knocking that, just wish the aides would bag the dirty clothes first. We came home and had some lunch and changed into our Lions Club tee shirts as we were on ticket selling in the afternoon. It is good Ray still gets some "service hours" up by seling tickets. This has been a good year for sales as a lot of people indulge in dreaming they will be the winner of the stocking - imagine that - $4000 worth of gifts and vouchers beiing delivered on the afternoon of Christmas Eve! What a difference that will make to the winner's Christmas!! I remember when I had Mum living with me and we would come home from a time away, as we drew into the driveway the weight of the world would settle back on my shoulders. That is how I felt this morning when I woke up. Oh dear, Ray is here. It is not that I don't love him to bits, I do, but it is taking up the nursing, cleaning, cooking etc all the small parts that together make up the caregiver role. We went into the hospital where my little friend Beryl is to see how she was going and take a small Christmas present to her. She is scheduled to go into the equivalent of a SNF for two weeks while everyone decides if there is any way she can come back home. A certain amount of care would be government subsidised so she could get up to three visits a day from the palliative care team, up to five days a week. But whether that is enough care to enable her to stay home as seriously ill as she is I don't know. Ageing , particularly if you become ill, for an elderly or frail person who lives alone is a real problem here. The decisions you have to make as to whether you can remain in your own home or not are based on the fact that "care will be provided" and the reality of that is often not what you expect at all. With our experience of the shower nurses twice a week plus the shower and two hours respite on Friday I know how good and less reliable carers can work from the same team. The reality is that reliability, consistency and conscientious performance of the care depends on a lot of good will on both sides. I would rate a couple of our carers as the best, a couple of others as good and a couple of others well.... I guess they just fill in their hours each week. Our Christmas day is almost organized. Last night Trev did a typical pre-Christmas job - he cleaned out the freezer while searching for a missing piece of roasting pork. You all know that: "it is in here somewhere" situation when you have an old chest freezer with food inside jumbled in no particular order? Well we have one of those. And to find anything you are looking for is an amazing achievement. But Trev did it and now all the meats we will cook on Christmas Eve are neatly stacked where we can see them. I have bought some of the side dishes, the last of those will be purchased tomorrow, fresh salad greens, tomatoes etc. and heaps of fresh summer fruits. The salads will be made up Christmas morning, hopefully before church time and then it just all needs to be assembled when we get home. Thank goodness this is a quiet Christmas for us. And so Ray and I need to get used to each other again. It seems I had forgotten a lot in two week on how to handle a person with memory problems. From a fiasco this morning I remembered I have to tell him what to do simply, repeatedly and in such a way that he will actually do it. Then we will get where we are going without a wife who is flustered and muttering wildly and a sulky husband who is determined to be unco-operative. It is all in the way you handle the situation and the tried and true methods work best - keep it simple sweetheart and one step at a time.

Donna, your northern Christmas season is so different from ours but I've been there (I lived in England until I was seven) and know how difficult it is to travel in the snow. You are a strong woman in so many ways and I admire the way you deal with the difficulties in life. I'll pray for you that this health scare you are facing at present is just a minor one. (((Hugs))) from Sue.

Ken, congratulate your son for us, he has done very well. Sportsman of the year is an awesome award so good for him. And good for you too, Ray never got as far as actually swimming, he was never game enough to take his feet off the ground so you have done very well too. Christmas will be a bit noisier for us as we will have our two sons, daughter-in-law and Tori (7) Alex (2) and Oliver (1) here. I know the little boys will keep us awake Alex does everything at a full run and Oliver tries to keep up with him. I'll have to wait til Boxing day for the peace and quiet to happen here. Best wishes to you and your family too from Ray and Sue on the lovely Central Coast.

Good grief, what a mockery we make of it all. Jesus, born in a stable or a cave or a cattle pen of some sort, born to a young Hebrew girl, looked after by a simple tradesman, raised in a poor family, became an itinerant, dependent on the charity of other... We all know the story, the wandering preacher, the healer, the divine man, whatever you believe. I know we are becoming more secular,less religious, even somewhat against organised religion but what has that got to do with the right of those who do believe to celebrate Christmas? To those who wish to tear down the decorations, take down the tree, stop celebrating, nothing is happening. Maybe for once you can stop putting your credit card into jeopardy because it is all so commercialized let's all cry: Bah Humbug. As for me and my house we will celebrate, give gifts, turn ourselves around, stop thinking of our own little needs and wants for a change and do acts of charity and love. Whatever you believe in, be you from Africa, Iceland or Russia, Canada, USA, Mexico or here in Australia, I wish the beauty of Christmas will shine once more in your lives. Heaven alone knows we need that extra reason for loving our neighbour as ourselves, being kind to each other and putting our spare money into the hands of those who look after the poor, the stranded, those who have had it hard in life. Fred, what foolish people we all are if we think anything can, in the long run, stop us from celebrating Christmas once more. Sue.

It has been strange being at home without Ray. At first I couldn't relax at all, I felt as if I should be "up and doing" every day. After all time is precious and I don't usually have a lot of it. But this week I am begining to relax and wind-down a bit. I decide at the beginning of the day what I am going to do, divide that by two and start on the list. If the jobs don't get done I put them on tomorrow's list. I guess that is about as relaxed as I get. Maybe just maybe I have become the caregiver version of a workaholic - funny what thoughts come to you when you have time to think! Last week I had all the flurry of my Uncle Don's death, contact back and forth by email with the cousins etc. Then the sudden illness of my friend Beryl and helping out there. I went in to see her in hospital and she looks great, the meds are re-balanced she has been topped up with whole blood, vitamin shots etc and her yellow colour has faded and she is pink cheeked again. I know this is not a cure it is just a few weeks of better health but I know her sisters, neices and nephews etc are heart-set on her being well for Christmas so I am so hoping that happens for them. I have visited Ray four times so far in the hostel. I normally go away to visit our daughter when he is in care so only see him a couple of times in two weeks. This time I was determined to visit him as I do Mum, for an hour a couple of times a week. In a way this is to prepare us both for the possibility that one day in the future he will go into full-time care. I know it is coming now. I read the blogs of others it has happened to and I know somewhere in our future it is there. When the time comes I want to be able to handle it as best I can. I know all this is idle spectulation at present but need to be ready. Last night I took Ray to our Lions Club Christmas dinner which is also our end-of-year meeting and break-up party. I rang the hostel to prepare him as I knew he wouldn't remember from the previous day. He has a very short short term memory now, nothing from the previous day would still be remembered. He was waiting in the wheelchair but had not had a shave or combed his hair so I attended to that. I took him in the wheelchair, transferred him into the car and off we went. We were early which meant I had plenty of time to talk to members and their wives as they came in. It is good to have a time of fellowship, something I don't get to do a lot. We had a lovely evening at the party, a good dinner, fun and jokes that our Tail Twister (Fines Master) is so good at. The Lions who form the " KB Singers" sang Christmas songs and carols and we all joined in. It was a good night for both of us. I was a bit worried about his transition back into the hostel but the night nurse was waiting at the front door to let us in and took him back along the corridor in the wheelchir so I was able to not have to see him back to his room. I know his sugar reading will be sky high today as I let him eat the chocolates off the table but hey! it's the season! I also had a special visit with Mum on Monday. As I have said before she is mostly unreponsive now having lost all language skills due to the frontal lobe damage caused by the dementia. She has no language and little understanding of language. Most of the aides "act out" what it is they want her to do, like getting up or walking. On Monday morning they had a very lively rendition of Christmas carols and songs by a very flamboyant organist who sings and dances as he plays! Mum and I were walking round and round as usual but when we came back one of the aides grabbed us and said: "Dance mama, sing!" and to my surprise Mum picked up the side of her dress in her hand, like a little girl does and started to sway and mumble a tune. She was smiling and nodding her head and winking and generally having so much fun and enjoyment in what she was doing that it took my breath away and I had a hard job to stop the tears. Jingle Bells played on and on and we "danced and sang" together for the first time in many years. It was a little miracle to me to be doing that with my dear Mum. This week I am still trying to sort out our Christmas decos, do the last of the cards etc. I will do a BIG shop on Friday and try to make next week an easy week with Ray back home on Monday and just one shower nurse hour on Tuesday I will be much busier with Ray's care. And Ray will no doubt be unco-operative as he usually is when he is back from respite and will NOT want to do whatever it is we need to do. It seems to be the way he settles back in, to act like an unco-operatvie teenager and give me extra grief! Maybe it is his way of re-establishing the boundaries. I just wish he was not so obsstructive. But it is part of the dementia I guess. Like other bloggers I sometime focus inwards and the blog is all about me, my life, my disappointments, my grief and loss and how I cope with it. That is okay. Blogs for me are for venting and whining sometimes and generally sorting things out. I am a person who takes a long time to "just get over it". Maybe I analyze things a bit too much, try to keep in control and plan ahead. Hey! that is just me, take it or leave it! But I think I have a heart of compassion and a nature full of natural affection for others too so I can be a cheerleader as well. Life is a paradox and I am still "sorting it out".

Just a word to encourage you Bart. You and Kelly will settle down into a comfortable relationship like Ray and I did. It is about companionship and not passion but that is okay. He has been in respite while I have just been at home catching up on things but I miss him. I took him out to our Christmas party for Lions last night and it was nice. I am sure Kelly appreciates the efforts you make to get that hand back useful again. Sure it seems like pushing a pea up Mt Everest with your nose sometimes but time is relative when you have had a stroke and this year, next year, some day you will suddenly see that improvement so keep on keeping on. Sue.

Kathy, we had the problem of "why doesn't Ray work" early in his stroke life. He is apple cheeked like you, has a lovely complexion and a smiling face, in other words he looks so healthy! What people don't understand is the deficits they CAN"T see. Now with his wobbly walk and obvious deficits, memory loss etc no-one asks anymore. I'm glad you had the visit from your parents. Your poor Dad is in denial and we know all about that too as one of Ray's sisters thinks I should "leave Ray home alone, go back to work and get off the pension" I heard that back through one of Ray's cousins but it sure sounds like her. Believe me I would have done all of that if it had been possible but right from the first he was subject to falls, needed someone in the house all the time etc. Have a lovely serene Christmas season, enjoy your Connor and the rest of your family. Sue.

You have certainly had a rough few weeks. Funerals and anniversaries, birthdays etc of those we have loved who are no more can shake us emotionally. Even happy times can remind us of those who are gone. I guess that is one reason I like to review the year, say my goodbyes to those who have gone and see what joy I can find when I look to the future. I am no Pollyanna so that attutude looks good but the practice is much harder. I have just lost my Unce Don in Canada last Thursday, he was the last of my Dad's family the youngest by ten years. I am awaiting news of a dear friend in her last days with cancer. To think of that at this time of the season of what is supposed to be "good news" can make me down but I try to think of the good times we shared and be thankful that I have had Uncle Don and my friend for so long and we have shared and enjoyed many good times together. You mention that you need a therapist but maybe in the meantime you just need to sit down with old photo albums and enjoy the past for the happy times it contains. That old song about counting your bessings is one remedy for the "blues" that I use. And I read the blogs here and commisserate with others who are having a more difficult struggle than I am right now. (((Hugs))) from Sue.

In the past week, with Ray in respite I have been supposedly having a rest from my caring role. but it has not worked out that way. My Uncle Don in Canada passed away and I have been emailing people on his email list with the news plus ringing people here whose lives he had touched as part of his many visits here. Over the past thirty or so years he came out on a visit to Mum and Dad, and then to us every second year or so and stayed 6 - 8 weeks each time so he touched a lot of lives. Also my little friend down the road was sent home from hospital on Tuesday in the last stages of cancer. I have known Beryl since I was eleven years of age as she used to visit her sister one road over from where I lived. I also went to the same school as some of her nieces so I guess I am a "friend of the family" too. Her niece who is a nurse and various family members and a few friends have been staying with her to make a few days at home a possibility. I said I would help out as I have had Ray in care and so have been available. I am really glad I did as last night, while another niece was there she became really ill again and went back to hospital. Those four days at home may be the last she spends there. I was there Friday afternoon and Friday night and came home at 10 o'clock on Saturday morning. She was fairly easy to look after as she is not demanding but I can say honestly that I slept very little. At 4am Saturday morning she decided she was hungry so we sat on her bed and ate toast and and jam (jelly) and drank cups of tea. It made me giggle and I called it our naughty mid-night snack. But by late Saturday afternoon she was vomitting again so that is why she is better off in hospital now as the end approaches. On the forums I often read that people should ask for help and one of the sources of help listed is always churches and church organizations. Now I don't know about America but here in Australia the congregations in the main stream churches are ageing. Admittedly we are still able to do a lot of charity work but jobs like nursing people in their own homes or dealing with people with disabilities on the whole is beyond what we can manage. We do host dinners as fund raisers for various charities. We have just held our annual Disability Christmas dinner which was a great success. We also packed gifts and hampers for the disabled people who live in local group homes. I know this is much appreciated particularly by their caregivers. But when you realise those who cook, serve the food for the dinners and tidy up afterwards are mostly in their eighties and nineties it is a huge task to have 60 - 80 people to lunch! We also have an "OP SHOP" now I don't know what you call your charity shops the "Op" is short for Opportunity and of course getting good clothing and household goods cheaply is a great opportunity. They too are mostly staffed by the seventy to ninety year olds and the money raised supports various funds and foundations as well as local charities. We do it all with tremendous good will but with church attenders ageing and getting to be a smaller percentage of the community now who knows how long we will be able to continue providing the services we do now? I'd love to be a volunteer but I have Ray to look after and that takes a good slice of my time. As Ray and I are both Lions on Monday afternoons in December I am selling tickets in our Lions Club Christmas stocking in our local shopping centre. The Stocking has $4000 worth of goods in it mostly donated so ticket sales are brisk. But it is a lot of people-power to staff it for a month. Our Lions Club have a singing group and one of the members who also goes to the church I go to said they put on 80 performances this year. That is another big contribution to the community as they entertain at retirement villages and nursing homes, the holiday camps such as Camp Breakaway, charity dinners etc. They are great ambassadors for Lions and people love their harmonising and the jokes the Master of Ceremonies tells as part of the hour or so performance. I haven't managed to go to the movies yet, or put up the Christmas decorations or finish up the Christmas cards but I will somehow manage to do those things in the week to come. Plus I need to get my car serviced, set Mum's room up with some decorations, bring Ray out to go to our Lions Club Christmas dinner and anything else that needs doing. It won't have been the rest I planned but then when does anything go the way I planned? I don't think I am good at taking "ME" time anyway, after caring for Ray for so long I am simply out of the habit. So in this week as in any other week I will just do the things I can do and do them to the best of my ability.

My uncle Don Durkin died today. He was ten years younger than Dad and the last of his family. He left two children but unfortunately no grandchildren. My cousin says she will ring me in a couple of days. I hope she will keep in touch now. I am a bit sad but at leeast I have lots of happy memories of his visits to Mum and Dad and to us over the years. Most of my overseas relatives I regretfully have never met but Uncle Don was a real part of our lives. May he rest in peace. Sue.

Hey Vix, about time you updated us. Have you got your own computer yet? Hot is good. Warm, drizzly and overcast here on the beautiful East Coast of Australia, we are still waiting for the summer heat to come. I guess we will get sick of it when it is here as usual. Glad to hear you are still seeing improvements with your hand and leg. That potato peeling sounds good therapy. As Jo said; don't worry about the time it takes you. It just amazes me that you can get improvement after so long. Enjoy your new life, we moved around a bit with Ray's work and each area has its appeal and now it's happy memories. (((Hugs))) from Sue.

Each time I go to visit my Mum I drive past a church bulletin board. This week's message reads:"Courage gives us the power to let go of the familiar." Now there is food for thought. Ray went into respite on Monday for two weeks. I hate to do that this time of the year, there is so much on and I can't really use the time off to go away or have a break. I am transport for a few of the church ladies and would feel I was letting them down if I suddenly couldn't take them to meetings etc. And at this time of the year there is so much to do here at home, like putting up the decorations, sending out the Christmas cards, doing the Christmas shopping. At least without Ray I can cruise to the shops whenever I feel the need and fly up and down the aisles like a mad woman. Because of a series of bungles by the planners and others that book the respite at the facility I use I didn't get the week in November that I wanted. I was going to use it to attend the WAGS ( stroke support group) womens weekend, instead, after a lot of arguing of my case and my need for respite I got two weeks in December. It was a take it or leave it situation, so I took it. Now I need to use it to rest and relax and get ready for the rush of Christmas and the stresses of summer. I need time off from the problems Ray has that fill my days - his incontinence, his need for thickened juice, his choking and swallowing problems etc. I would have preferred one week as two weeks gets him too used to doing nothing all day and being waited on. I can't keep up that kind of service at home with a staff of one. So he finds it hard to come back home and have to go to the kitchen to get a spoon or if he needs a straw or go to the bathroom to wash his face etc. I still do all my usual things, I just don't baby him like they tend to do in respite. So far I haven't done anthing that could be construed as "me time". It has been housework etc. But this afternoon I did go and sit in on the end of a lunch for one of the groups I belong to. It meant I caught up with a couple of people I've missed seeing since my Fridays got so busy. Ray wouldn't have gone to the lunch so I had put in an apology but thought I'd go and have a drink with a couple of people I have made friends with who belong to the group. I couldn't get into chat today (Tuesday night Caregivers chat) but did manage to use the IM ( Instant Messenger) system to have a conversation with a couple of people. For those who don't know how to access that, go to Community links, double click on Who's Online, at the end of each members line you will see IM, double click on that and the Instant Messenger comes up and once you are in it is like one-on-one chat. You can IM several peple and have two or three chats going at once if you are able to concentrate well enough for that. Today I talked to Babsz, Shirley (Phoenix) and for a short while Donna and Sarah (spacie 1). Instant messenger doesn't replace chat but it is a useful way of contacting and connecting with a person. And it is available 24 hours a day, if you can find someone else that can't sleep or comes from a different time zone. Remember here on the east coast of Australia when it is 8pm in the chat room it is noon the next day here. By the way my cousin in Canada rang me up at 3am this morning. Her Dad, my uncle and my deceased Dad's one remainig brother, is ill and I had left a message for her so she left a message for me, then rang me thinking we were just twelve hours ahead and woke me up at three! She had said she would ring at 8am her time which she didn't so it was well after midnight when I had decided she wasn't going to ring and went off to bed. I am not much of a conversationalist at 3am! Distance can divide us and isolate us if we let it. I can't up and fly to Canada to see my uncle before he passes. I would love to do it, to repay him for the number of times he flew to Australia and stayed a few weeks to support my Mum and Dad. It would be lovely to see him one more time, whatever his present condition. But I have the responsibility of Ray. And they tell me the snow is fairly deep in Canada this year. So I am one of those "absent friends" we all complain so much about. Woe is me. I am not able to be as supportive to my cousins as I would like to be. So if she wants to ring me at 3am - so be it. I was chatting to Shirley (Phoenix) on IM . She was talking about the difficulties she has now that her eldest daughter has left home, leaving her with extra tasks some of them very difficult for a one handed person to do, like doing her disabed daughter's hair. I realised as a survivor and a caregiver for her disabled daughter what tremendous courage she has. She faces her day to day tasks so cheerfully. She is a real inspiration to me as are a lot of the survivors here. Sure we always have those who could probably do more to help themselves but on the whole they are ( or should I say YOU ARE) a wonderful bunch of people who have great courage and use that power to face the all the challenges of everyday living. Good for you all. Bravo!!

Jan, for getting the weight off try water therapy if it is available in your area. The water supports your body and helps keep you upright when you walk. If you are happy in yourself people will want to be with you and share your happiness, that is somehing I have found. If you can grin, chuckle, laugh the world will want to know why. I try to keep as cheerful as I can and keep Ray engaged with the world and busy with activities as I think the stimulation of all you do keeps you mentally healthy too. Mind you I am the one who only has to DEAL with the stroke not to LIVE with it and I know that is a big difference. Sue.

I think Ray was very lonely for a while. We were both working and had active lives prior to his two major strokes in 1999. He had 4 1/2 months in hospital and rehab unit to come back from being paralyzed to being able to walk out of the rehab unit. It was a long tough fight. Then of course there was a big let-down as he realised he was not going to be able to go back to work, to drive etc. It took another twelve months or so before we started to rebuild our lives. An added factor for us was that I had taken my parents in as soon as Ray came home from hospital. Dad was seriously ill and not coping with my mother who had Alzheimers. Four months later came my Dad's death from cancer and I was looking after my mother still for the next two years too which made it even more of a challenge. I think Ray was in denial about the reality of the situation too. He kept thinking he would suddenly get better and get another job etc. It took a couple of years to sink in that this was never going to happen and this was our "new normal" , by then he had had a broken hip and then in 2001, his next stroke. We have rebuilt our lives. After nine years of post stroke living our friends and acquaintances are completely changed and we have accepted that some of our "old friends" are never coming back. We have phone calls from a few of our old crowd a couple of times a year and that is all. We no longer have anything in common with them. BUT we HAVE rebuilt our lives and do have some good friends who have been through most of it with us including friends from Ray's stroke support group. Our lives are very different from what they were in 1999, probably really slowed down but the sun still shines on us and we enjoy the little things in life that keep us amused and keep life worth living. Sue.

Janine, I am glad that Larry's life has returned to some resemblence of normalcy and you have continued to be able to work. That was never an option for me. Ray's decline has been so slow and yet I see the tiny changes and do not know what 2009 holds for us. Right now he is in respite for two weeks giving me extra time for sleep etc. I am up because I was waiting for for a phone call news of an uncle, the last on my Dad's side. Unfortunately the news was he has a month or so to live so I am not traveling well. I keep reminding myself: "this too will pass". Keep up the blogs, you and Larry are like family to some of us. (((Hugs))) from Sue.