swilkinson

This is Yolanda's (Elondie) about her grand daughter Tootie who had a stroke at birth: http://www.strokeboard.net/index.php?app=blog&module=display&section=blog&blogid=390 Yolanda is her grandmother.

Brijay, we do have younger stroke survivors, some parents who look after young stroke survivors and some grandparents who do the same. I hope some of them will make themselves known to you and you can support each other. Welcome to the Blog Community, there is unlimited experience here, we are no experts but we have a lot of full-on caregivers and veteran stroke survivors. So keep on blogging and some of them will catch up with you here. Sue.

I would recommend twin beds. We had them the last three years Ray was here, partly because of his incontinence and partly because he had clonus in his left leg and would kick out. Like you and your husband Rose one of us slept hot and the other cold. So we had twin beds pushed together and I slept a lot better but could reach out to Ray if he needed me. With the same covers on both beds you could not tell it was not a double bed at a glance and there was plenty of room for the wheelchair etc on Ray's side.

Beanna, exactly how I feel. Ray still holds a place in my heart and for 45 years of my life was at my side. Now I may seem to walk on alone, but the influence of all we were together is still there. Maybe some day another person will walk alongside me but that will not diminish what we had together including our three children and all those friendships we shared.

Ron, I do see where you are coming from but neither sister is really where I am at. The sense of humour is always there, the pleasant smile, the love of family, the love of life. But life is sometimes gloomy for a while and that is okay. I doubt my friends would see some of the things I write on here, to them I am eternally "Happy Sue". And that is okay too. Ray will always be part of who I am, part of the fabric of my life, another may come into my life and also be a part of me but what Ray meant and means to me will not change.

Cindy, sounds like most families, only want to come when they need something from you. It would be nice if you could turn them off for a while but there is no off button! So enjoy the period between visits. You could try to set boundaries, like no phone calls before 6pm, but usually you just get flak from that. I seemed to go through a similar period for a while. So build yourself and Mike up instead. A vacation? Have a full day off, pull the blinds closed, light up the candles, put on the soft music, dance around the room, eat your favourite food, maybe just the one glass of champagne. I know this is just a fantasy day in a way but do whatever floats you away to somewhere else. And come here and vent anytime.

Being a widow is different from being a wife, loneliness is a factor, not having someone to consult, doing all the things you have to do alone, planning for one, eating alone...you get the picture. But there is also a prejudice out there about widows. Someone recently called me a "merry widow"...hmmm, not sure about that. I do seem to be happier these days and probably just as well, it stops my friends asking the "are you over it yet" question all the time. Yes, I am over the initial shock, I do function like a human being. But there will always be the Sue'n'Ray thing, 44 years doesn't just vanish overnight, or even two years down the track. Last night I went out to one of my regular once a month dinners. But last night I came in with someone else. I got a lift to the dinner with one of the members as I had left one of my car doors slightly open and run down the battery so it would not start. No time to call the mechanic to come out and give me a jump start, my next door neighbour is away so no help there, so I phoned a friend. As I came in with "J" all eyes swiveled towards us, several people frowned and no-one came forward to greet me. Why? Because I was a widow travelling with a guy who already has a known girlfriend. And that was not okay? Really??? The week has been busy, Shirley and Christopher overnight on Sunday night so farewelled them mid-morning and started to put the house to rights. Then John from next door came over and we did some more work on the back garden, it is bare up there now, no more herringbone fern. It will look good when I get finished with it I know. Moving some of the bromiliads up the back and some along the fence, I will take a photo of them when they bloom, I love their odd flowers and their vibrant colours. It has been nice to have someone to work alongside, that is another thing I have missed, the companionship involved in working with someone. Yes, John has a girlfriend too but I am not a threat to her. Tuesday was a wonderful Spring day and a woman friend and I (she is the one who lost her 47 year old son recently) had decided we would have a day out so we went to one of the local Surf Clubs with a beachside cafe and had morning tea, went for a long walk on the beach, went to my favourite Club and had lunch, then lingered over coffee in the lounge just looking at the view and relaxing. She said it was one of the nicest days out she has had recently and I agreed. I forget sometimes that I have these precious friends I can do some sharing with. Some of the new things in my life, like being a "does coffee" friend to a few of the other widows from church, being on Skype, having some flexibility so if a friend asks "are you busy today?" with a few exceptions I can clear my calendar and say "yes" and making the harder decisions without losing too much sleep are part of my recovery now. As you know I feel I can move forward but not yet move on...it is a personal decision and sometimes defies logic but when it happens to you you will understand. Some people take a year to get over losing a spouse, some people take a lifetime. That is the way it is. Last night on Skype I connected with one of the oldtimers from this site. I started life as a chat host doing general chat so got to know a lot of survivors as well as caregivers. This lady is a survivor. We have kept in touch since then and I recently learned that her husband, who was also her caregiver, had died. Yesterday we finally caught up on Skype. Of course the first thing we discussed was the time difference, the weather, the funny accents we both have, mine Aussie and hers American and then got down to the common area, we are both widows now. She cried and apologised, I cried a little too. It was a good call and a comfort to both of us. I hope we manage to catch up on a regular basis, somewhat difficult given the time gap but where there is a will there is a way. On chat each week I think G-d that I am still able to talk to the amazing women and men on this site who give so much love and attention, so much work and effort to keep their partner or parent in the home they love or who they support in a facility. Caregiving is not an easy job, not something anybody can do, not a highly paid or highly regarded job, but it is a job we do out of love. I had 12 years of hands on care with Ray and then a year where I commuted to his nursing home, I had two years of looking after Mum in my own home and 11 years of supervising Mum in her Dementia Lodge and then nursing home. Visiting in the nursing home is not as hard a job as caring for someone in your own home but it is an essential task. Lonely people die sooner and their care is not as good, as we all know from our experience with hospitals and rehab units. People need companions on the journey and cheerleaders to keep them going.. I have since visited numerous people in nursing homes on behalf of the church. It is what I learned to do through my journey with Mum and Ray and what I continue to do. Life gives us certain lessons to learn and once we have learned them we are free to put them into practice. Sometimes I wonder what life holds for me now. On my wiser days I know that life in the days to come will reflect what I have learned up till now. And that has to be okay.

Welcome to the Blog Community, I am sure you will get a lot of support here from survivors and caregivers alike. We are no experts but have heaps of experience between us. Yes, you do sound as if things are going pretty well for you but when they don't it is okay to vent here too as we all do from time to time. Good 1st blog, I know we will learn more about you as the 2nd, 3rd etc appear. Sue.

Wow Debbie you have done so much. And the way Bruce has himself organized is fascinating, that man uses all the brain cells he has. Congratulations on all you have done. Sounds like there is plenty left to sort and i am sure you will get through a lot more before Spring. I can imagine the pleasure of all of those books to re-read already.

Cagin, my blogs go back to 2006 so if you can't sleep at night they are there to read...lol. You are about the same age as my youngest son, Like you he had a lot of time for his grandparents and was a great help to me when I had my father and mother living with us. Ron, moving on is over-rated. Someone told me today I should "forget the past and move on". Forget 44 years of marriage? I don't think so. I am moving forward, I can see the difference from two years ago...but moving on is another matter.

Jeri, lovely to meet you in chat. No competitions, we all have our own problems so feel free to share yours and we will help you all we can. Sometimes we are serious and sometimes we just muck about and have a laugh. Practice all the sounds, the emoticons and the colours, choose an avatar and make yourself at home with us. I looked after my mother with Alzheimer's for two years, I could tell you stories about that till the cows come home. Glad your Dad is manageable, that is all that counts really, being able to manage the situation. It can still make you very tired though so the break in November is a good idea.

Katrina, glad you had a good night's sleep. Yes, it is nice to find someone who has similar needs to your own. Sounds like you could make a great team.

Massive fatigue is a quite common side effect of strokes. My husband had his first mild stroke in 1990, went back to work six months later, drove to work, drove home, collapsed in a chair, I woke him up to eat, he had dinner and went to bed, repeated that five days a week. On the weekends he managed to get through the morning and slept each afternoon.It certainly restricts your life. it is part of new research here in Australia so let's hope we get a result as it is what is stopping a lot of people from enjoying life post-stroke. Good to see you had the energy to do another blog :welcome: . Sue.

I'm glad you are making plans for when your grandmother comes home, the Fuar sounds the ideal place for a walk and talk session. The stimulus of being out in the open, seeing different sights and hearing different sounds give the brain a good work out. I know the feeling of people seeing you when you don't look the best as I have had a couple of bouts of that myself BUT it is still good to be alive. Grandmother's return home will put some strain on the household for a while particularly if there are therapists coming and going so I hope you are settle back in well. Sue.

Love those laconic answers, Ray's post 2005 was "It was okay." so I never knew if he really enjoyed things or not. But I did so that was important too. Glad you got out and enjoyed your lakeside walk.

Ron, I did the big trips in 1994 and 1998, Ray had had a slight stroke in 1990 so we didn't do Greece as I would have liked to, too much walking. He had the two major strokes that retired us both, me to look after him, in 1999. I went alone to England last year to meet up with cousins. I didn't go to Europe as we had done that, I did go back to Ireland and the memories were mixed there. I probably need to go somewhere I didn't go with Ray. Sometimes new growth comes from overcoming memories not avoiding them. For me the reunion was about facing some of the places I had been, fear, anxiety, isolation etc (I was a strange kid in some ways). So the future for me lies in rejecting those fears and moving on in my own time, in my own way.

Glad you finally had your holiday Lynn, you have to keep building those good memories into your life. I often wish I had an approachable sister but life is the way it is. I am close to the beach and there certainly is something soothing about the ocean to me so today I am going on a beach walk with a friend and then we'll go for coffee. It will be a delight to the soul. Sue.

50 years on, 50 years on, what can we show for our 50 years gone? I went to my 50 years anniversary of my high school graduation in 1964. Thank you to the chat girls who encouraged me to go. As usual I was disappointed in who was not there but glad to see who was. Met up with two out of five of my debating team buddies. Guy, now a retired accountant can still talk under water with a mouthful of marbles and I could hear laughter wherever he was. Margaret is still working in an education field and as per other reunions took my name, address and phone number and promised to call. Chrissie I would have really liked to see as the person I got on with best but she was not there. She and I were also co-editors of the school magazine in our last year. Sadly one of the girls I often sat with for lunch in our senior years had that dazed look that dementia gives and had come with someone else who obviously was keeping an eye on her. There was an honour roll for those we have lost to cancer, heart disease etc. But there was also much rejoicing that we had all come this far. Some did know that Ray had died and expressed that kind of condolence we do casually: "Sorry, so what are you doing with yourself?" I gave various answers according to who asked. I did not scream: "I miss him so much." as I really wanted to. I was quite amused about the men who cruised by and either frowned and went on, held out a hand to shake or kissed me on the cheek. Obviously some didn't remember me or recognize me but then as they are now without hair and wearing glasses no wonder I didn't recognise them! I must have a look that says "I care" as I sat next to a man who had lost his wife to leukemia four months ago, I didn't know him well but expressed the usual sentiments. It saved me talking about my own loss I guess as he talked for about an hour straight through dinner. There was no singing and no dancing this year so I was home well before midnight. Thought I wouldn't sleep as of course there was no-one to talk things over with but must have slept like a brick as I woke to bright daylight. Sunday was busy so I left home at 9am and arrived home at 2pm, My daughter came in about twenty minutes later. I had Shirley and grandson Christopher here overnight, she thought she would be able to stay two nights and I was so pleased, she is rarely here and time with her is so precious. Then she got a message to say she has to do a funeral on Wednesday so would will need to go home today to prepare for it (she is a minister as a Captain in the Salvation Army). Of course I put on a smile and said:no problems, I understand. Now I feel sad that she was not able to stay the extra night. Putting on my brave face though and trying to feel it is all for the best etc. Before they went today we got a universal remote to replace the one the little boys lost earlier this year. I can channel surf again Debbie! Christopher played with My Super Mario Cart on the Wii as he usually does. He had broken his right wrist falling off his top bunk in the middle of the night so his father has dismantled it and he is to have a single bed and trundle for his buddy to sleep on when he stays over. Christopher is over 6 foot tall so he has to be careful with what he does for a while. I would have loved to have had him stay for the week but he has doctors to see. I asked Shirley if it was possible for him to come and stay here for a week next holidays but she didn't say anything. What is life all about I wonder? Is it sufficient to just live one day at a time? What about all the lost and wasted years? What about the things we had planned to do and will never do? I pondered some of those things sitting in the sun this afternoon. Where am I now in comparison to where I wanted to be? I didn't come up with any answers, I don't suppose it is easy to formulate life changes and suspect I have to wait and see what life brings. I am afraid to contemplate the big moves still. Shirley asked me today if I had any future plans and I said no but I would like my life to move in wider circles. She asked me if I should move away from the stroke related world, from Ray's world, but I said I was still not at ease with doing that yet. I have just been asked again to come to the WAGS Women's Weekend in November. Should I go? I want to be with those wonderful women again but.... And so I am left with the usual doubts. BUT tomorrow I am going out with a girlfriend and we will go for a walk on the beach and have lunch out. I arranged it myself, I am getting better at that, taking the initiative.I can manage to do things like that now. I could become a lady of some leisure,but I like to be useful being community minded from way back. So I will take some leisure fitted in as usual around the routine activities. I think I can handle that for a while longer yet.

I know that sentiment about walking out of the rehab. When Ray had two strokes four weeks apart in 1999 he had six weeks in hospital and three months in fehab. He could walk when he came out but the hospital insisted he be put in a wheelchair to be taken to the car! Safety issues I guess. He was still in a wheelchair for a while after he came home but walked with a quad stick eventually. After each consecutive stroke he went back to the wheelchair for a while, Good and bad memories of all that time. I am glad you family is dealing okay with your grandmother in rehab. I know how tired your mother must feel having been in that situation myself. Please give her a reassuring hug from me.

"Don't let go of the things that make you smile. Embrace them and hug the joy out of them." As a widow, a former caregiver and a woman that made TOTAL sense to me. Thanks for the whole blog, you are very determined and that will get you a long way in this stroke journey. Keep on going. Sue.

Hope it gets better for both of you, Rose and beanna. Stroke sucks but survival is the reward, more life, more hope. Sue.

Katrina, when I get into a state as my Mum used to call it I think to myself: "This too will pass". Acceptance does not being without hope for a better future. Sue.

It is two years today since Ray died. Because I knew I was going to sit here and mope and cry I went off to the local shopping centre. I did the girlie shopping, had a chat to about 8 people from the church, four from Lions and a couple from my Stroke recovery group. Then in came the friend I often have coffee with ( she looks after her stroke affected son) and she said:"Sit!" so I sat and she got coffee and a muffin to share and stayed with me for an hour. This was very reinforcing of our friendship and the fact that we share not only being stroke caregivers but also we are both widows. I read the posts from September 2012 and September 2013 in this blog and realised i had come a long way on my recovery journey. I am about ready to make some life changes, looking for something challenging and that might be a "Chaplain to the Ageing course" if it is running next year. I think Health Services is still getting it's act together on that one. But I do think I am ready to tackle something like that now. I have done a lot of smaller courses but need a course to update what I know and draw it all together. I slept very little last night. The dream in which I hear Ray calling out to me was back (hopefully just for one night) and I kept getting up to walk around the house. Nothing seems to make that one go away. When you know the emotional pain will be back you have to do something you like to do to ease the pain, so I try to have a coffee with a friend, buy a new book, come home and watch one of my old favourite movies. That is my formula. I was lucky and did far more than that today. This afternoon I sat in with the person who hands out food parcels at our church on Friday afternoons. It is a strange system, we just take the persons name, ask how many are in the family and assemble some food from the Welfare Pantry. The food is all donated so sometimes comes in some funny combinations but it will tide the person over the weekend with maybe a bit left over for next week. We try to be jokey about it, put the person at ease, not make them feel like they are begging. One woman had had to pay for a long train journey to see her sick mother, another had repairs done on her care. They don't have to give a reason, that is between them and G-d. All they have to do is have a need.This session today reminded me that life goes on and i can cope. Tomorrow night I am going to my 50th year school reunion of those who graduated in 1964. If you had read what the chat girls said about that on Tuesday night it would have made you blush, they had a lot of fun at my expense. So no, I will not stay out till 3am or finish up in someone's motel room girls. What I hope to do is reconnect with some of the people I have missed, preferably those who have retired back to the coast so I can see them more often. I know some of my old classmates will have done much better than I have career wise and financially but know that none could have better supporters than I have had or gained so much out of what could have been a disastrous chapter of my life. The life that Ray lived and his bravery in the face of that journey will never be forgotten nor the strength I have gained by sharing his journey through both recovery and the long sad road to his death. When asked what I have done in the past ten years I shall smile enigmatically and say: "Nothing much actually and you?" If you want to you can read my last anniversary blog: http://www.strokeboard.net/index.php?app=blog&module=display&section=blog&blogid=165&showentry=12064 and see the difference. It is good to have the blog so I can look back over the years and see how far I have come. And yes, I did have a good cry before the night was over.

Debbie, I keep promising myself I will do what you have just done. I wish I had someone who would help do it but i don't. I will try and be true to my promise to declutter some this summer. You are inspiring me. I did the bed thing, moved the double bed, we were in twin beds and then when Ray went into the nursing home the twin beds went into the middle bedroom and I had the new double mattress and Mum and Dad's old bed. Now that has a squeak which is annoying me so maybe it is time for a new bed? Don't despair about what Bruce wanted to keep, you did as much as you could and next year should be able to get another load out of the house. Hold that thought.