swilkinson

Debbie, I was away at the kidney specialist at chat time. I was informed the rooms would not be ready so don't know what happened. Welcome back and well done you and Bruce for making the most of the therapy time, just keep building on it and see what happens. See you in chat soon, Sue.

The ingratitude of it all, all those lords-a-leaping bundled up and sent back collect! I agree about the french hen soup though...yummy. Glad your Christmas was a good one, we don't know what is ahead of us so we have to make each day count. Have a great 2012 too, it needs to be a healthy one for all of us. Sue.

January for me is “Reading Month”. I adopted this in the ‘90s when I was working full-time and studying part time. No study from early December till early February so in January I caught up on any books I had put aside to read. So if I am sitting down and obviously not doing much and someone asks what I am doing the reply is: “It’s January so I am reading.” I think it is the little things that keep us going in life. Taking time to do our own thing whether it is gardening, reading or playing games on the computer, if it is OUR pleasure then we use it for leisure. I’m thinking of Debbie and her “lady shower” that she has when someone else is in the house keeping an eye on Bruce or Sarah and her hot stone massage. If you don’t have a hobby or leisure activity maybe you can think of something special you can do that is your way of relaxing and feeling better about life. Most activities do not start up again in Australia until mid-January. A lot of older Australian assist the younger generation with childcare so it is expected that most of our church congregation will be unreliable attendees during the six weeks summer school break. It is no use setting up annual general meetings until February when we are all back home again. This gives us all a breathing space and I like not having regular commitments for a while after the frantic lead-up to Christmas that leaves us all feeling so tired. I went over to Ray’s NH today and realised it was BBQ lunch day. This is only really a sausage sizzle but relatives who are visiting get to eat too. Today it was a few French fries, a scoop of coleslaw, a little cut up tomato and a sausage each and a slice of buttered bread. I sat out in the courtyard with Ray and talked to other wives who were also sitting helping their husbands with the meal. It was a good time of fellowship and a less stressful visit for us all. We need those times to realise there are a lot of us in the same situation, loved ones in care, us rattling around in a half-empty house or sharing with a family member. None of us feeling happy about the arrangement but knowing this is the only way things can be right now. What we need to do is let go of the control and let go of the guilt that comes from putting a loved one “into care. I am still working on that one. Ray has had a blood vessel break in his right eye; this could be due to an episode of high blood pressure or a prolonged coughing fit. Whichever it is the eye is improving after four days of looking red and angry. Every week there seems to be something new to worry about. He fell asleep before the end of the barbecue today; I woke him up to eat his ice cream. I know he would hate to miss out on that treat. It took three days for staff to locate Ray’s shoe, in the end one of the cleaners found it so he has two on again. He was also wearing one of the new shirts we bought him as a Christmas present. Since he has been sitting all the time he has put on a lot of weight around the middle so has gone up two sizes. I took home the ones that didn’t fit and substituted the new ones. I like him to be as smart looking as he can be while still feeling comfortable. The arguing here seems to have stopped for the time being. Edie’s health is a worry at the moment as at 18 weeks pregnant she has high blood pressure and her kidney tests came back to show she is stressed. It is partly the weather, hot and humid and just the busyness of summer and Christmas. She works and has a child and a new husband and a new address, no wonder she is stressed. Mum was the same this week as last week when I visited her yesterday, sleeping with an occasional time of opening her eyes. I know she could slip away any time now. I am not worried about her as she gets excellent care. I am just concerned to see the staff do all they can for her, that she is clean, comfortable and in no pain. She and two of her room companions are at the same stage so one by one they will slip away. I am gradually reconnecting with some of my friends and acquaintances I have been too busy to keep up with in the past year. For a while all my energy had to be focussed on Ray, now I am trying to let go of some of the control and letting the staff at the nursing home do what they are paid to do. It is not easy but I am trying. A lot of Ray's needs would be beyond me to cope with now, I know that, and I need to be confident that the nursing staff are competent and able to meet those needs. I wish the same for Ray as I do for Mum, that he kept clean, comfortable and in no pain. In addition I want him to be allowed to join in the activities available as much as possible and for as long as he is able. We were laughing today in the courtyard about our menfolk playing bingo, probably the last thing they would have thought of doing had they been well and active, but it is a time of fellowship for them as they are all seated together around a long table and given treats as part of the afternoon’s activities. The leisure activities put on by the diversional therapist and her assistants are all about filling in time and keeping depression and boredom at bay. One of the fellows found himself with a group of ladies sorting squares for rugs. He was apparently quite good at colour co-ordinating and the ladies enjoyed his company. He is a real old English gentleman and enjoys whatever company he finds himself in. It is often not about what you do but who you do it with. Perhaps the life Ray lives now would seem trivial to some but think of all we do in life and communicating with others in whatever way is possible is certainly one of the bonuses of our existence. Ray is now truly retired and I hope will find pleasure in being at leisure for whatever time he has left. He seems happy enough now and that gives me peace of mind too.

Katrina, getting acquainted with your family again is good. I like that you make time to play on the wii with the young ones, they will remember that in years to come. Good luck with the job search , I too hope that 2012 is a good year for you. Sue.

Julie, we look forward to your blogs too and updates on Larry's progress and rejoice with you when you are both enjoying those stable periods. We are all part of a great community here so it is like hearing how your neighbour spent Christmas to me. I agree about those changes in looks due to stroke, Ray's photo pops up in the gallery sometimes and I think how well he looked back in 2005-2008 compared to now...but that's life. Sue.

George, thanks for the new information, yes at aged 66 brain cell protection is important. I always like to read your blogs, wish some of this had been available for Ray earlier in the time frame. Tell Lesley venison and wild rice sausages sound sublime...one night I'll drop by for dinner. Sue.

Therapy is tiring and sometimes becomes old hat. Our survivor gets tired of it and we do too. But when they are discharged it seems like a tragedy. It isn't. It is just the start of a new phase.Somehow life has to be rearranged to make it new so the pool, the mall, take him anywhere that he can walk with the walker and find something interesting to do and see. I agree about work. I left my job as I seemed to have no choice. As soon as Ray came out of hospital 4 1/2 months after the two devastating 1999 strokes I started looking after Mum (Alzheimer's) and Dad (Dad died four months later, terminal cancer) as well as doing all the therapy etc with Ray. I looked after Mum for two more years and she went into care in 2001, after Ray had stroke number four and I quit coping with it all. I think that was my hardest year. You need to have a plan for your life, one week, one month, one year, two years, three years...how long have you got together? I did twelve years of hands-on with Ray and now I am at the nursing home with him at least three hours each day and my heart is breaking again ..but life goes on. Smile Judy, put your shoulders back in public and cry in the shower as we all do. You are a strong woman and somehow you will get through the dark tunnel you are facing right now. (((hugs))) from Sue.

Dyan, you gave his daddy a gift far greater than just a normal baby boy, never forget that. You gave him the gift of a stronger wife and mother. And we gained you as a good friend. I hope Cayden gets the therapy he needs. (((hugs))) from Sue.

Talked to a mother this morning at church who picked up her last boy at 3am. No taxis around so Mum was the "designated driver". Happy New Year Fred and to all who call you their friend. Sue.

Karen, you and Bill are on my prayer list too. Never think you are alone as we are there with you in spirit. You are both precious to us. I know "Happy New Year" seems a misnomer, at least I for one had a good cry this morning as I thought of years gone by. But we must all look to the future, as you say, one day at a time. (((hugs))) from Sue.

Lenny, at one time Ray had to walk towards a long mirror so he could see what his legs were doing and adjust his gait. See if that helps you. Sue.

Debbie, glad things are going well and Bruce returning to some of his old ways of doing things. It has been a long time getting to some of these steps but it is amazing how improvements seem to come "sudenly" but it is really the end of a process that has been happening since the beginning. I commend you for your patience as you work through the new processes with Bruce. I hope you find somone reliable to replace Jen. Sue.

A "take it easy " Christmas is what I have planned for next year. This yar we still did too much and it all nended in tears as it oftne does. Such a pity when we over load the season when it is supposed to be all peace and joy. (((hugs))) from Sue.

Christmas was the final straw I think, too much work, too little return as usual. I don’t know why our family must do it all, Christmas Eve, Christmas Day, Boxing Day all seemed full and Trev and I had a big argument this morning. I guess we have tried too hard to play “happy families” when we have a feeling we are all on the edge of a Black Hole. To me, with Ray in care now, it was a real effort to do family Christmas when all I really wanted to do was sit and cry for Christmas’s past, for the end of family life as we have known it and what we all have lost during the course of this year. For those who have your loved one at home it must be hard to comprehend that having your loved one in a care home does not seem easier or better. To me it seems like flying an aircraft in a thick fog, you know you are not in control but are desperate to land your life in a safe place. I have been holding back on so much emotion, trying to stay calm as my house is reconfigured to take in three extra people. Yes, I do want to help them out by having them here so they don’t have to pay rent. No, I do not want things so changed that when I go to the cupboards they have all been changed around so I don’t know where anything is now. I want parts of my home and parts of my life to remain unchanged so I can cope with all the things that have had to change whether I liked it or not. And I don’t think any of my children understand that. If the timing for this move is wrong then I guess they will move off to another rented house and I will rattle around here alone until such times as I decide to move. If it does happen to go that way. If I can’t keep up the expenses on my own, if I can’t find tradesmen to deal with some of the problems the house has developed, like the main toilet cistern broken, then I will have to do a fix up I can afford and sell it. It is hard to look after a family home by oneself on a single income. All of Ray's income goes to keep him in the Nursing Home and part of our savings too. It is not cheap now. On Christmas Eve Trev was very tired, it was a humid day and he had to work till 1pm. Then he came home and was busy getting the main areas of the house free of boxes, not an easy task as there were still quite a few of them to move. In the end it was done and I hoped we could all relax. Lucas and I went off to a Children’s Christmas service which went quite well and I was proud of him for the way he looked after the little ones at church. Christmas Day itself was quite good. I think the idea of having lunch with Ray was good, but I think affected all of us more than we realised it would. Lucas and I went to church first while the other two did some preliminary cooking. We went together out to have lunch with Ray. It took us 20 minutes to locate him as he had self-propelled himself to the very end of the building and was in someone else’s room. This seems a frequent occurrence now and is his stroke-affected version of being a dementia-related wanderer. The staff members are good but with few of them to be spared to look for him we had a fruitless search until someone finally located him. The lunch was adequate if not plentiful (old folk’s portions) and we then had a cool down time under the trees out near the park at the back of the facility. There was some false bonhomie, there was no spirit in any of us to try and make it seem anything like the Christmas we hoped it would be. We got gifts for Ray but he just looked puzzled as usual and there was no feeling that he did know what day it was or the significance of our visit. As soon as we got home it was straight into preparations for the evening meal. I think the ideas of what we wanted to do in catering for the meal was a bit ambitious for the time we had. We did manage to burn some vegetables and by then realised we were about an hour out with the meat dishes. Yes, we should have kept it simpler. I know that now, but then three kinds of meat and about five vegetables plus sauces and gravy seemed doable. Finally the rest of our family arrived and it seemed to be Christmas at last. I am not happy until the family, or as many as can come, are assembled because Christmas is about family, about being together, or anyway it is for me. But without Ray our family was not complete. I just couldn’t get away from that fact. Shirley and family had called over to see him on their way to us and I could see she had been crying so I guess the changes in him had brought her to tears. The rest of the evening went well, we had Shirley and family stay overnight and in the morning we all had breakfast, some talk and they went about 11.30am back to Sydney to pick up Craig’s Mum and take her away for a week’s holiday. She is a widow and loves to spend time with her grandchildren and beloved son. I will be down visiting them at the end of the month the grandchildren get to spend some time with both of their grandmothers. The next day was normal activities for me, Trev and family were at Edie’s Mum’s place as it was her 60th birthday and her family had gathered to make a fuss of her. Good for them, so they should. Today was not a good day as again I think everyone was overtired and cranky and so Trev and I had the argument. I am not sure this multi-generational household is going to work out. Too much strain on relationships when people live too close can cause big rifts in a family and I would rather not go there. Lucas being hyperactive is an added problem. Yesterday I did have a good encounter though. Ray’s younger brother finally did his visit to Ray and arrived just as I got there so we three spent about half an hour together out in Ray’s favourite spot in the courtyard near his room. It was all a bit awkward at first but at least he kept his word and visited Ray over Christmas as he said he would. For a non-coper this was a pretty big deal. He is a nice fellow, just not that empathetic. I am not sure about the future. Yesterday Ray was missing again and when I found him he was missing a shoe. These are special shoes as they fit his brace, he was still wearing the brace and one shoe. Today he was in bed when I got there and the shoe had not turned up. I will have to see if I can find another pair the right fit without having him physically with me. Without a pair of solid shoes he can not take part in activities or go out on the bus. Seems like we just lurch from one crisis to another, doesn’t it?

Leah, I think it will happen from time to time. Just give yourself some downtime when it happens then pick yourself up and go on as usual when you are ready and live to your "new normal" if you can. Thinking of you and praying that peace and calm will return. Sue.

"Living every day the best that I can" is a good motto for your new life. One day at a time is all we have. Grandiose plans for future happiness fill our dreams but the life we live is having to live with reality. Congratulations on making it through that first year, it is the tough one. You've done well. Sue.

Leah, you write so calmly here. I am glad you felt able to put out the nativity scene, and sorting through the decorations and giving some to your neice is a great idea as she, her baby and her partner will cherish them as you did. You know it is early days yet and there is still so much grief in your body and mind to deal with but it sounds as if you are doing fine. (((hugs))) from Sue.

Debbie we did quite well too. I haven't blogged about it yet, still doig some reflecting, sometimes you need time to pass to do some reflecting and get things into perspective. Glad all your planning worked out and your quiet Christmas provided the relaxation you needed. Sue.

Julie, what a great Christmas weekend, your kids, his kids, your grandkids. I think that is what Christmas is all about. And great that they brought food along too so the catering was not all on your shoulders. Ours worked out pretty well and I was so glad four of us went to the nursing home for lunch wth Ray. Our daughter and family were only here for less than twenty four hours but at least they were here. Every year can be different with a stroke survivor but as long as the family can still act as the support team all is well. Sue.

Our grandson is ADHD and OCD at times. Mostly he is just under control, sometimes right out of control. Already I have learned with him that he needs to stop, pause a minute and move slowly on again. I am trying to teach him to be peaceful on the inside, slow his thoughts down, take deep breaths etc. Sometimes it works and sometimes it doesn't and we both blow a fuse! School has been out a week already and I am tired of the constant arguments, it is like being under machine gun fire! But we'll survive, only six more weeks to go...lol. Sue.

This is my first year with Ray in the Nursing Home; he went into care in September though he actually left here on 13th June to go into hospital. I wrote letters in all the Christmas cards to say what had happened, where he is, what I still do for him etc. I was not surprised when the cards came back addressed to me as only my name was on the back of most of the ones I sent out and I finished "from Sue" or "love from Sue and Ray" as I think Ray would express that love if he could. He really can’t now as he is more and more showing signs of being locked in. I go to visit Mum and I know she is locked in almost completely now. I took Lucas to see her yesterday and I could see he was uncomfortable as certainly she and the people in the lounge room with her are all close to death, sleeping, moaning a little in their sleep etc. We did wheel her off to “church” which is held in the main lounge room and shared with the hostel people. There are usually about fifty there and the little chaplain who is disabled herself and comes in in her powered chair does a very nice service. Lucas asked me if my Mum understood any of this and I said we really don’t know. I know she can still hear and occasionally tries to communicate with me. Lucas told his Mum: “It was so sad, her mother was trying to communicate with GrannySue and she couldn’t, isn’t that sad?” And it is very sad indeed. When I visit Mum now she is mostly always curled up in her comfy chair. She and two of her room mates are shifted out of their room as soon as they are up and dressed because the fourth, a younger woman, screams out and swears a lot which disturbs the other three. Mum mostly has no responses but sometimes does her mutter, mutter talk, almost under her breath, not always sleeping as she may have some very short periods of alertness. She still opens her mouth and swallows food; she still drinks, though more like a baby sucking now. She responds to sounds, particularly music and to some light stimulus, which is about all her reactions now. She and two of her room companions in her Nursing Home four share room are at the same stage so when I arrived early in the week for a visit all three were side-by-side in their comfy chairs in one of the lounge areas sound asleep. They really looked like three babies in bassinets, all curled to the one side. Mum has had a few near death experiences over the past two years but one day will die of close to natural causes I should think. It is all in God’s timing but for those of us waiting here on earth this journey of Mum’s with Alzheimer’s seems to have lasted a lifetime. I've already been called to Mum's bedside a few times when according to the nursing staff or a doctor she was definitely dying but there she is, still going. I don't have any hang-ups about death, in my volunteer chaplaincy I often sat with the dying. I guess when it is actually your own Mum and you sit for hours and hours watching the person you love gasping for breath or receiving what is obviously going to be their last medication it is more difficult than sitting with a stranger. Mum has been through the "scattered thoughts, scattered language, shuffling walk and bedraggled appearance" stage. She has been through the "muddled, mumbling, hardly walking, falling down" stage. Now she is clean, tidy and mostly sleeping, I think a visit is much more painless for me, sadder of course too to think I am missing that last stage much more than I thought I would and longing to hear her voice once more. Mum is beyond needing to be protected even as no-one wishes her ill or is likely to want to harm her. The nursing staff is in a routine with her and just sees to her most basic needs, for her to be washed, fed, kept clean and dry, sitting or laying out in her comfy chair. She is fed pureed food and thickened drinks. It is strange that in a way her life now is so peaceful. I would not have imagined it would be so with so many stormy passages behind us. It has been a long, long journey with Mum and sometimes I have prayed that she does go to sleep and not wake up but she obviously has a strong heart and she is waiting for something to signal the end for her, maybe that “gathering of the angels” that some people see at the end of the journey. Emotionally I do feel like a widow and an orphan. I visit Mum in her Nursing Home, I visit Ray in his. I can't look after either of them alone in the stage they are up to so that is another fact. I try to be realistic about what is happening and reach some kind of acceptance of it. My official status is married, separated due to illness. That is why we each get a single pension now. The fact is the factor here. And of course I am not an orphan; my dear Mum is still alive. With the Christmas season here though I do feel lonely and very bereft of companionship in both cases but that is to be expected at this stage, everything is so new and emotions are still raw about the needs Ray has now that have separated us. Despite all of this I am still trying to organize a “Happy Christmas”, Trev, Edie, Lucas and I are having Christmas lunch with Ray at the Nursing Home, then Shirley and family and Steve and his children will join with us for a sit-down Christmas dinner. Trev, Edie and I will spend a lot of the afternoon cooking but that is part of the fun too. Happy Christmas to you all from Sue, Ray and family.

Debbie, I wondered why I hadn't got a card from you and Bruce yet. Is that because my name begins with "W"? Congratulate Bruce on the progress he has made so far and tell him how you long to be able to climb those stairs with him at night to go back to your own bedroom (or whatever else you can think of to encourage him). Sue.