swilkinson

I think this theme of survival has come to the surface of my mind from time to time as I wrote a blog along these same lines in August last year too. Either that or these same photos get "found"every year when I do a bit of a spring clean! There is a lot to be said for what we achieve when we look at old photos and think about them for a while Donna. In this case the updating of how I think about the strokes and our life post-stroke for one. It is like slowly releasing our past, good and bad and celebrating our ability to still function despite all that has happened to us. Yes I do have Ray with me still, and hope to for years to come. Sue.

Wendie, tough love needed here. "Sorry George, it is the van or you stay home." I explain something to Ray, then I say: "Sorry, dear,that is just the way it is." and I walk away. He sulks a little but I stand my ground. I am the caregiver, without me he would not be here. So sometimes things have to be done my way as I have to protect my own health to look after his. If you as a caregiver get a herniated disc or something complex wrong with your back where will he go? Back to a SNF? Will he be happy there? I'd ask that question too. If George can't walk and won't ride then his pride is going to spoil everything in the end for both of you. Maybe a few trial runs out in the country somewhere where people don't know him might do the trick? I know that worked for a friend, she made it a fun day out with a picnic and soon her husband was off in the chair and getting away from her with a smile on his face. Every new change in our lives is a challenge but if he would try it might make a difference to the time he can spend at home too. Nice to have you in chat tonight. We'll be thinking of you as you try this out. (((Hugs))) from Sue.

Mel, your husband has really done well in sticking with you through the stroke journey. So many lose their partners over an illness that it is such a blessing when your partner does stick by you. Life isn't real exciting sometimes, but that is what I personally like now, peace and quiet! When I was going through a rough patch in my marriage once a wise friend told me to stop looking for all things in one person! That was good advice. Which is why I go to different people with different needs. Guess that is why I stick with friends and acquaintances that I know I can chat to any time too. Maybe to fill in what you now see as empyt time you could take up a couple of new hobbies, take an interest in community doings, take on a new volunteer job.There must be plenty of volunteers needed in even your small community. You seem to have so much talent I am sure there must be organisations who would love your help. If you are lonely use the phone, the internet and the email system here. There are always a lot of newbies here who would love an encouraging email I am sure. Sorry you are going through a blue patch right now, hope life seems brighter for you soon. Sue.

I have a photo taken the day before Ray had his major stroke in April 1999. We were at a convention so it is a photo of 9 happy couples from our Apex40 Club who had just had two days of fun together. All dressed in our best before the dinner on Sunday night. 18 happy smiling faces. I also have photos of the breakfast in the park the following morning, hours before Ray's stroke. Most people look tired but Ray looks tired and gray faced. We had mostly packed up our motel room and were due to vacate at the end of the picnic breakfast. Then it was an eight hour drive back to our planned overnight stopover and another ten hours drive to reach home. Ray said he was not looking forward to the drive. But as we still had another couple of days vacation I said he would have some time to catch up on his sleep so he would be okay. That morning he seemed to have lost his appetite and just picked at his food. I laughed and joked with the rest of our group but he didn't get up, just sat and stared around him. On the way back to the motel he suddenly started to lean on me. I thought it was a joke and told him to behave and walk on his own two feet. When I realised he wasn't joking I supported him back to the motel. Why didn't we realise he was having a stroke? Probably because he was a diabetic and I knew he had had a lot of sugary foods the night before, so we said it was a sugar high. I got him to lay down and when our friends slowly returned told them to leave without us as Ray was not feeling well. A couple suggested going to a doctor before we left town which seemed a good idea. Our local hostess said she would take us to her doctor. When Ray's condition seemed to be getting worse not better we decided the local hospital's Emergency rooms would be better. And that is how he ended up in Bendigo Hospital, one of the best hospitals in Victoria and one I am very grateful to. Ray never walked back out of there, never drove home. Life as we knew it had changed forever. When he came home to our local area it was by air ambulance. When he came back to our house it was in a wheelchair. He had spent four and a half months in hospital and the rehabilitation unit. But he is one of the lucky ones. Three of the happy faces in the photo have died, two women of cancer, one of toxic shock. One fellow had a stroke early this year and is now back in hospital with severe infection caused by leg ulcers, he may have to have the leg removed. Another fellow has recently had a heart bypass and several others have health problems. I guess that is how it is as the years go by. No-one lives a charmed life and some folk just live longer than others. For us there has been a lot happened since then, more strokes, the hip break in 2000, the pelvic fractures and hip joint crack this year which hospitalised Ray for eight weeks. And I guess there is more of life's struggles to come. In the words of an old song: "into each life some rain must fall, but too much has fallen in mine (ours)." But hey! we are survivors and along with the thirteen others of the 18 smiling faces in my photos, let's hope that is the case for many years to come.

Ann, I don't seem to have read your blogs for a while so just read back to catch up. I agree that time sometimes goes so fast that it can be a month gone by and I don't notice. I hope things work out with having Trey there once the initial "honeymoon period" is over. Our Trev fits in well mostly but can sometimes have pretty high expectations of meals being ready when he wants them etc. Not that I get real worried by that but it can be an added tension sometimes. But he is also company on the days when Ray isn't speaking much so I guess I like the conversation and it is good to have someone taller to reach things down from the top shelf too...lol. Ray's meds seem to be good and bad, good because the diabetes is under control and bad because Ray's mind is noticeably deteriorating. We had an incident tonight when not listening resulted in him breaking something and then I was accused of not telling him etc. Nasty when that happens as no-one is right! I guess two wrongs just make for unhappiness. Or that was the result for me anyway. I hope the Aricept continues to work for Bill and you have some happy days ahead. (((Hugs))) from Sue.

Welcome to the blog community Tascha, it is not easy to get started but soon it will become very easy and as it can be addictive I am sure we will all get to know you well. The dinner party sounds great, you did a great job. It sounds like you made the plans and then were able to do it all with precision and finished up with a good result. Bravo! I'm glad you have a supportive husband, family support does make a big difference. Even as a caregiver, or maybe especially as a caregiver, I need a lot of support, encouragement and kind words to keep me going. It is nice that you had a chat last night too. I host chats on Tuesday nights so you are more than welcome to drop by and say "hi". Sue.

Since Ray's stroke in 1990 he has had fatigue issues. I guess it didn't worry me at first that he went to bed early, after all he went back to work six months after the stroke and was bound to be tired. And at that time we still had kids living at home so there was always someone up and about. But as the years went by I have sometimes felt the loneliness of the "neglected" partner. It is not so much that I am alone, although certainly I am alone after he goes off to bed. But I am also alone in a lot of other ways too. I am alone as the person who does the work here. Whatever there is to do it is my job. I know this is a constant theme with me but it is true and sometimes I wish I had someone working alongside of me. Ray and I had an old-fashioned arrangement, he was the outdoor worker, I ruled the inside of the house. So the lawns, the heavy work in the garden, maintaining the house in good order was his job. He also saw to the car, mechanical repairs etc. At some stages he also paid the bills as he was out and about more than I was. After the 1999 strokes all that devolved back to me. In our pre-stroke life I raised the kids, tended the house, sometimes working outside of it as well. I acted as social secretary, took down phone messages, kept our social calendar, wrote letters to the family at a distance to keep in touch ( remember letter writing?) and made sure we had enough food etc in the house for the visitors ( my now I AM reminescing!) and organized the parties. Ray could trust that if we needed to go away suddenly I could pack up the clothes, the kids and the car and be ready to take off when he got home from work. Boy! we did that a few time when various of our parents were ill, when there was a funeral at "home" and we had to travel 10 or more hours to attend, and even once for a surprise birthday party we had 48 hours notice for! Ray and I had a good marriage. We weren't always in agreement but generally we could reach a compromise. I only left him once and then only got to the back gate and realised the car was out of gas! And no way was I filling it up out of the housekeeping money, no sir! So I went back inside and unpacked and all was well. Well to be honest, maybe I sulked just a little. And mostly we got along with the rest of the family too. I enjoyed being a part of the community, the church, the family. There were a lot of good and happy times back then. Now this is not a vent. I was just sitting here thinking how lucky I am compared to a lot of my friends. They are older widows, a few now almost to the stage where they should not be living on their own. I have had eight years of caring for Ray and with a little bit of luck will have further years of him being at home with me. But like the widows I often have no-one to talk to, no-one to share my troubles with, no-one to give me help or advice or counsel. So I am alone in the sense that I have to do a lot of things for myself, by myself. As a caregiver I have lost touch with a lot of those girlfriends who would have formed my social group and been my advisory board. If I discuss things with them now I can see they are flounderng , not really knowing what to say when I tell them a small part of my problems. They are all outside of their comfort zones. But then I can come on here, post or reply to a post, put down some of my thoughts in a blog and I know the people who read it will understand some of what I am saying. So it is good to be part of a community of people in similar situations, either isolated by stroke or isolated by caring for someone with a stroke. And that is a comfort to me, that I am lonely but I am not alone. I don't know what the future holds, none of us do. I know though that we make our own future. No-one else makes it for us. I can choose to be lonely, sad, thwarted by fate ( the stroke) or life and feel really sorry for myself. I can always settle on the pitty pot and have a pity party. But I don't see that as being a good long-term plan. Instead I really need to find a way of filling in the empty hours, getting back to being as independent as I can in how I spend my spare time. It is not a good prospect to see empty years stretching away ahead of me and so I need to fill them in a way that makes me happy and keeps the loneliness at bay. Any suggestions would be welcome. I feel at this point that I need to look at this issue and find a way ahead. I have just had a long chat with a woman who is looking after parents with dementia. Like me she is locked into a situation not of her making. Like me she is struggling to make sense of the situation she finds herself in. We each deal with the difficulties in life as best we can. Interacting together made both of us feel less lonely, and less alone. That can be really empowering. I am glad that has been one if the things I have been able to do here.

Just sending you a heap of (((HUGS))) and hope you get better news soon. Sue.

You know how life is - whatever happens on any given day is "normal". So if Ray gets up , gets dressed, gets to the breakfast table okay that is a normal day. And is he makes a mess of himself, the bathroom etc and I have to wash him, his clothes, the whole shebag, that is normal too. For that reason I didn't know I was depressed. I did know I was struggling with a lot of issues, particularly the incontinence but I didn't realise I was depressed. I know I WAS depressed because I am not depressed now and I feel so different. I can look at the world and see what is going on, I can take what is happening here and cope with it without getting too stuck in the turmoil of it all. And I put all of that down to the break away I had for two weeks. Two weeks to NOT look after Ray. Even with all there is to do here it was so good to be able to simply concentrate on the task at hand without having to keep one ear open to see what was happening in the next room etc. Just had a long phone call from a friend who listed all the woes mutual friends are having and guess what? I just said how sad it was and didn't feel as if I needed to do something about it. Isn't that good? I somehow got my perspective back. I can sympathise without having to get personally involved. Amazing. And yet I know that this feeling will not last. That the day by day grind of looking after a long term invalid will again take its toll. That days that start with some kind of trauma and finish with me being exhausted are the rule, not the exception. And I can say that fairly confidently about some of the other caregivers here too. So what am I going to do about it? Well, I hope that I am going to keep on top of things like the housework, the bill paying, the phone calls, the appointments with doctors etc. I hope that when I do have a real problem that instead of stressing out over it I will ask for some help. I have never been good at that but it is one of my new goals. "Ask for help when needed." I hope you will all keep me honest on this one and when you see something in my blog that says to you that I am no longer coping you will say in reply: "Do you think you could use some help with this one?" It will be like being a member of "Copers Anonymous"..lol. For today I have sorted out some of my concerns about looking after the little ones while Pamela is in hospital having the next baby. That is getting closer with "due date" being only three weeks away!. I have asked for equipment like the folding cot to be brought over and am going to ask the girl over the road if she has a playpen and any toys I might be able to borrow to keep Alex amused. Tori will not be a problem as we have plenty for her and I to do and it will be a mini vacation for her. But Alex is different, at 13 months old he needs to be kept amused if I am to cope with him for five days on my own. This is in case Pamela needs five days in hospital and assuming it is early in the week when she goes into labour of course. If it is the weekend or hopefully Friday then the time they are here will be shorter. Steve wants to take some time off in October to "bond" with the new little one so does not want to have time off now. We had Alex last night while Tori went to her school disco. It was held from 5.30pm till 9.30pm, they dropped Alex off about 4.30pm and then went home for Tori to change into her new outfit. Luckily she and Mum were back here about 9pm which was good. I think Ray had had enough by then and by then Alex was asleep,laying in a nest of pillows on the loungeroom floor. I think Granma and Pa had tired him out. Ray will speak to him if he is in the same room, help to retrieve toys with his walking stick, roll a ball for his amusement etc. so it is not as if I have to do it all myself. I am just worried in case Ray has some problems while the kids are here. I just have to be confident that all will go well. It is all about attitude, I know that. If I think "all will be well" it usually is. The problem here is that having had Ray take five strokes, break a hip, then recently his pelvis and hip joint etc I know that trouble comes to us sometimes out of a clear blue sky. There is no way of knowing ahead what life will be like. With people who have not had trauma in their lives their confidence comes from knowing that nothing bad is likely to happen to them. For those of us who have had a lot go worng in their lives confidence has to be based more on our ability to cope with problems as they arise. This is much harder as the years pass I find for me. I have been coping with the problems in Ray's life as well as my own and that makes for a burdened feeling sometimes. And maybe does lead to some depression. It is something I will have to keep an eye out for, those signs that I am not coping with confidence and that I am not happy with the way life is for me. Hope that the feeling of being back in control lasts for a while. It certainly is a good feeling. Wish I could bottle it and take a glass full every time things start to go wrong and I find that hopeless, not coping feeling creeping up on me again.

I just love this "news about the family blog". Congratulations on your attitude. I love when you say that you know your limitations now but you can still be happy! It is such a great thing to be able to accept where you are and be happy. The " 'dopted" grandson sounds like a real treasure. Enjoy the contact and he will enjoy having you as his grandmother I am sure. We love all four of our grandchildren, we had the youngest last night, for a person with such short legs he can move really fast! I spent all evening saying: "Ta for Granma" and taking things off him that he shouldn't have had in the first place! Will stay tuned for your next exciting episode! Sue.

:happybday: :happybday: :happybday: :happydance: :happydance: :happydance: :happydance: :happydance: Hurray for you, The 3rd aniversary, And your birthday too. Get in the happy mood To help you to improve. It's your great attitude Will get you back in the groove. :happybday: :happybday: :happybday: From Sue.

Linnie, I missed replying to this one. I agree with all of your 5. I'll try to make a list of my own one day. I would like to add: Life is too short to: 6) pursue friends who can't be bothered keeping in touch 7) to keep filling in all this paperwork! Ok, for Ray's sake I do have to fill in a lot of forms and send them back to whichever government department or organisation thinks it needs all this information. But it not my favourite way to spend my time. Sue.

Ray is home at last. I left here after chat to go and get him. I found him sitting in the lobby to the hostel where he had respite. When I asked him where his luggage was he said to ask the receptionist. She called the supervisor and she went in and brought it all out on a trolley. The hostel is not open to the public until tomorrow but they decided Ray could come home today anyway as he was out of his quarantine period. I was really thankful for that. I enjoyed the break from Ray but we have been married nearly 39 years and I miss him when he is not around. I think he was glad to get home too. He didn't have many memories of his two weeks stay, just said he was lonely the last four days as he was not allowed out and his meals were brought to his room. As a way to stop the spread of infection lock-down is a good method but it is hard on those who suddenly find themselves isolated by the experience. The viral gastritis is currently affecting a few of the local nursing facilities so lets hope it is soon contained and no new cases arise. We went to the church to help with kids club this afternoon. I was the rostered kitchen helper. I will just do this when they are desperate. As Ray sleeps in the afternoons 3.15pm is not an ideal time for us to be out but I thought it would also break the routine for him, which it did. I have been involved in kids clubs for many years so it was good to see that kids still enjoy the same things, the games, the craft, the story. Mind you they still wriggle like a can of worms just like we used to when we were forced to sit still and listen at Sunday school, so nothing really changes. There are new ideas in my head since I have been away. From a distance you can look at a problem from the outside and weigh the options. I need to do some minor house repairs again, I wish I could claim it on insurance but most of it is wear and tear. So I need to contact a few tradesmen and get some quotes. I always find it harder to do the things which were once Ray's responsibility, like arranging for tradesmen to call. Somewhere in the back of my mind the world is still divided into men's work and women's work. I know it is old fashioned thinking in this day and age but I have to over-rule that inner voice that says:"Not my job, let someone else do it." As a caregiver I have assumed Ray's jobs along with his care, so really it is all "Sue's job". I have a couple of busy weeks ahead of us with extra doctors appointments etc. Pathology too as Ray has a regular monthly appointment and it is blood work time again. There is always more than enough to fill our week up. The pattern of our days remains roughly the same week by week but the extras seem to fill in any spare time I think I have. The weekend is really just Saturday as Sunday is filled up with church and either family contact or gardening in the afternoon. I still have a pile of postcards I told myself I would send off as soon as I got back from Cairns, and I didn't tidy the cupboards out as I planned. It is true that over the years we all get slower and routine housework etc all takes longer. Tomorrow morning I will start life once more with Ray's insulin, helping him dress etc. I will soon start complaining that I am tired, the work is too much for one person etc. But for now I am glad he is home.

Wow, you must be proud of Rachel, a lot of girls with her disabilities wouldn't atempt a job. I am thankful every day for the people who give disadvantaged young people a chance to work, hold down a job, get the training they need etc so they can feel a part of the community again. Soon there will be other steps for Rachel as she returns to her old life and maybe a little more freedom for you too. I did a lot of waitressing as I paid my way through high school too so I know what it is like, she will be very tired at the end of the day. (((Hugs))) to you both from Sue.

Linnie, welcome back to the blog world. Don't beat yourself up about what it takes time for you to do now. It is good you finally figured it out. I am sure it will just become routine in no time. We have to be thankful for this site and the opportunity it affords us to communicate with each other. Who kew once that we would have friends across the globe who we could keep in touch with every day? I look forwrd to your next blog. Sue.

Ray lost a lot of weight after his strokes and lost most of his "padding" so I bought a special foam cushion and used to take it in the car etc for him to sit on. That seemed to make him comfortable. We also used a big soft pillow behind him as without the weight he seemed to feel he was at the wrong angle in the armchair. You just need to spread the pressure evenly and that helps you feel comfotable. Hope you can find a way around it so you can relax more easily. (((Hugs))) from Sue.

Susan, it is not only stroke that prevents you from doing what you want. I have just spent time with my daughter who lives 1700 miles away from me. I can't be with her on her birthday either. From our experience you have to compensate by sending a package or a funny card or arranging a time ahead when you will phone. I know it is not the same as being there. Having said that I can't imagine what it is like for you as I haven't had a stroke, but have looked after Ray for eight years so we share the restrictions somewhat. Sue.

Bonnie, I would love a laptop, particularly in winter when it is so COLD out the back here where my computer lives! I could just see me sitting toasty and warm.... a blanket over my knees, my warm slippers on...a steaming cup of coffee by my elbow...lovely. Glad to hear you got your laptop back to normal again. I just hate it when someone interferes with my settings and I can't navigate to where I want to go! I am a creature of habit and my favourites list has the sites I mostly go to and that is my nightly checklist. I'd like to swap washing windows for cooking dinner and washing up occassionally too. Sue.

Kakii you are so right, the answers to prayer don't always come in the form you expect but they do come with perfect timing. When you are in your new apartment you will be surrounded with all those little tokens of love the church folk and your family are giving you and it will be like living in a warm hug! So many reminders of people's goodness and kindness. Our kids assumed that their new appointment would have its kitchen set up and were amazed that it didn't. Instead family and friends got together and gave them what they needed. So as they wash up they say:"This dish came from so and so as a sign of their love" and tell of all the friends and family members who supplied what they needed. It makes their kitchen so special. Hope the friends come for a visit and you can share their gifts with them and show how much it has meant to you and made your home special too. (((Hugs))) from Sue.

Hi Ken, there must be a powerful computer virus around as my computer is down again and I am back on Trevors which he has taken back to basics three times now. But got to be grateful for having one anyway. It was -3 degrees Tuesday night here. I was in Cairns where the night temps were higher than our day temps and the sky was an incredible blue. Ah! holidays are such fun and being with the family was a treat I needed. Sorry to hear you are still not walking. Can you get any more physio? Ray's picked up again after the last lot but I guess after two weeks in respite and probably very little exercise he will be slower again. Think of Spring it is only six weeks or so away. Sue.

Hey Donna, glad you made the transit so successfully. Thought it was funny that Crystal opened the zipper, resourceful kitty that she is! Can't wait to see the pics in the Gallery. Think of the steps as therapy and it will not be long before you never think of them as a problem. I'm sure you will soon work out the best way to do things. It is sure nice that your family made it homey for you and I am imagining you will soon add those personal toches that make it yours. We have moved often enough for me to sympathise with what you are going through. But it will soon become the place where you have always wanted to be. Home IS where the heart is. Hope the move is a success for Kristi and Crystal too. (((Hugs))) from Sue.

Kristen, in northern Queensland you are allowed to do a U turn at traffic lights and in four lanes of traffic it has to be done very fast! It is like riding a roller coaster. My daughter Shirley laughed when she saw the look of terror on my face the first time she did it! I'm glad you are getting time with family and friends. I agree with Patrick that it is hard to seperate friends, particularly old friends who have always been there for you, from lesser relatives. Old friends are gold friends. Have fun on your holidays, I sure did on mine. (((Hugs))) from Sue.

Yes Kim, I am proud of you too. It has been a long hard struggle but somehow you have stayed in there, fighting to keep your man stable and happy. It is great to see you back on blogging again and catch up with your latest news. (((Hugs))) from Sue. :friends:

Well, here I am back in the chair in front of the screen, home again. Got home about two hours ago. And after the balmy north it is so COLD! You probably get that when as a snowbird you come back home from somewhere like Florida - from the warm winters back to reality. And yes! there were two frosts while I was away and people said they can't remember when they had one before etc. But I remember "when I was a girl we had real frosts and ice formed on the puddles...." you know what I mean. Just rang the northern family to tell them I had arrived safely and my small grand daughter Naomi said: "When are you coming home Granma?" She wanted me to "stay with me forever". So I guess you could say the visit was a hit. Granmas are the people who read a story three times, take you to the park, have time to paste the monkey face you cut off the cereal box onto another piece of paper so you can color it in. Mums and Dads are busy but Granmas have a lot of time. I wish it could be that way for longer, but a week was better than nothing. I enjoyed the north. Cairns is a beautiful city on the coast ( where the kids live is a suburb)and the multitude of palms and tropical gardens show it is warmer than here.The spectacular foliage plants particularly caught my gardener's eye. We didn't swim as the lagoon, their big swimming pool on the water front, was having repairs done and the seaside was a nice place to sit beside and have a coffee but I didn't feel inclined to get into it. We had some lovely drives along the coast, particularly on Saturday when we went further north to Port Douglas and the sea is a spectacular aquamarine studded with tiny islands and the shore is lined with palms and the undergrowth looks like jungle, all the things you imagine the tropics to be like. Shirley had to go to a womens meeting in Townsville, 385kms further south so she took two other ladies and me for company. It took us over four hours to drive down there, we had the coffee evening, stayed overnight in a motel and drove back to Cairns. With cities so far apart in northern Queensland it is difficult to get ladies together for such events but they considered it worth the effort. The Salvation Army church she leads also had a BBQ night with a travelling country band also made up of Salvation Army members and that was a real hit with the locals too. In places like that they take entertainment as a privilege rather than an everyday occurrence and I think get more enjoyment out of it because of that. The remoteness of the north has left it with a lot of charm the newer larger cities lack but even there the high rise is starting to dominate the waterfront so to see it in its best light you had better go there soon! We didn't go out to the reef but I will stay longer next time and plan a couple of excursions to just be "a tourist for a day". This trip was to catch up with family things rather than to go sightseeing. And I did read out in the sun, and I did play in the sun with the ball and the kids, and I did feel as if it was all worth while. I came home to a message that I need to ring the respite center as they have a "tummy virus" running rampant there. But I am sure they would have said if Ray was sick and am assuming it is just the general warning they issue if there is a something nasty they don't want visitors to catch. So that can be dealt with tomorrow. I didn't take my camera so I can't post pics in the Gallery yet, I will have to wait until Shirley downloads hers and sends me some. You will just have to believe that the sky was so blue, the sun was so warm, the setting so exotic that I just loved being there. And having the family there made it just so special.