swilkinson

It is so true you cannot sit around feeling sorry for yourself, there is far too much more life to live. You have found that with your GPS and cell phone you are close to help, with your computer you can contact other like-minded people. To take that a step further maybe one day you can also volunteer here as a chat host and help others that way. Sue.

Ruth, I marvel at how much you fit into your life. William is so lucky to have you as his caregiver. :You-Rock: Keep up the exercise, :gym: it is so good for William and gets you out into the community too. Sue.

Dean, I am not sure what we can do to raise the standard in our countries. Here in Australia we do have Disability Pensions some free PT,OT etc for stroke survivors,subsidised medication, respite for the caregivers. We have to be happy with that, the National Debt is big enough without us making more demands. But we do need an approach from the medical profession and all who work in stroke care that says "we are going to do our very best to make sure you get all the rehabilitation you need" that is what is lacking in our system - the intention to give people back their potential. Sue.

You could start with your local hospital and then branch out on your own. A local community centre here has a Carers group that meets once a month, an hour in the centre and then an hour over lunch at a local cafe. Or you could just start with a group at your local church as most churches have rooms to let out rent free. If you don't have a church contact the local Salvation Army, they are always there to help those who are reaching out to others. Good luck with it all. Sue.

I am feeling much better. Despite the heat and humidity that results in poor sleeping patterns I think I have turned the corner. Looking back I think the fall off the step-ladder set me back quite a bit, with pain at night in the left hip and maybe a *beep* in the armor of my confidence. It doesn’t take much to make a caregiver feel vulnerable. Today in chat we talked about our emergency plans, not only where to find the supplies, what medications our dear one is on but as thorough as an hour by hour description of the day for the seven days in a week and beyond lodged with a family member so if someone needs to take over in an emergency they can. If a rock falls on my head and I lapse into unconsciousness I would need someone else to take over. I would need them to know what Ray does, when he showers, what he eats, when he sleeps, how his bed is set up, when he wakes up etc. They would need to know when the carers come in and what they do. That is a lot of detail but if it helps Ray to feel safe then it is essentially what needs to be done. And in order for me to recover Ray needs to be safe. The talk about emergencies covered a lot of ground as we experience different things, for me it might be bushfires and I have been cut off by floods in the past. For others it may be snow storms or tornados and for Gwen who comes from New Zealand it was the earthquake, not local to her but constantly on the news so a reminder of her need to be prepared. So do we all need to be prepared, even if the emergency never happens. My day today started as usual showering Ray and getting him breakfast, sorting his medication, finding his money for Daycare. I did an hour’s ironing then off he went in the bus. I went to the shopping centre and did a very quick shop. Now we have plenty of fresh fruit and vegetables in the house again for the rest of the week. Then back to chat with the girls and Mike, lots of good advice and helpful information exchanged. By ourselves we tend to think laterally, in a group we think outside the square. I am amazed at how a problem turns into a plan as we all contribute ideas. If you are reading this as a caregiver and never get to chat please consider putting time aside so you can come, it is so good to share information and gain the support we all need. I said farewell to the remaining group after an hour and a half and went down to one of our local beaches. I tried to go there last week but the wind was blowing in from the sea, the waves were high, the seas very rough and it wasn’t conducive to contemplation. This week the tide was out, the sky was overcast but I had a good walk and also perched on a rock and studied a rock pool for a while. I find the sea calms me down and I love this particular beach with its many rock pools. There is something about watching the minute fish, half an inch long or less, mostly blending into the sandy bottom, moving from one side of a rock pool to another. I think it is the very smallness of the image and the thought that this happens whatever I do. The tidal pool is little affected by mankind and yet full of life, a parallel universe in microcosm. The Monday and Wednesday Daycare seems to be working well for me and Ray likes Wednesdays particularly as there are four other men there. As he lives with a woman (me) most of the people he meets are other women (my friends) so he lives in a female dominated world. His men friends are no longer around. The exceptions are the male Lions of our Lions Club, the men from our Apex40 Club, some of whom speak to him, sadly some do not, and one or two men from our church. None of these see him outside of the context of the Clubs we belong to. It must at times seem a lonely life to him. I am glad Trev still comes and goes; today he was under the house looking for camping gear. We always had plenty of that and as he is thinking of camping as a way of getting away for an occasional weekend he is investigating what we have and what he needs to look for elsewhere. He always talks to Ray for a bit when he comes over. Ray wouldn’t initiate conversation now but does give brief answers if you speak directly to him. We build our “new normal” out of our everyday routines. Every setback takes something away and sometimes life can seem like we are “rearranging the deckchairs on the Titanic”. But we need to consciously and consistently rebuild our lives into a pattern we are happy to live with. Life may be difficult but it is doable.

Debbie :forgive_me?: well done you!!!! :yay: Yay for Bruce also!!! You are right it is the long haul, the repetitions over a six months period that does the trick. Ray will give up in a week, you keep Bruce going and one day that arm will move through a whole range of motions. I wish I had Mary Beth, would you like to swap sisters? LOL. Sue.

Wow Ruth, bridge is a hard game to follow so if William can do that with some help that is a great cognitive therapy. You do so well, looking after William and working and still having some time out for lunch and a movie. Sue.

Asha, I can read the envy in your post. Time to get planning some dancing of your own! Lydi, as they say "dance as if no-one is watching" and have a great time. Sue.

That is so true , we are not only hoping you will get out and have happy vacation but hoping that we will all have the opportunity to do the same. I am crossing my eyes, my fingers, my toes for you. Probably explains the funny way I am walking now...lol. Sue.

I would be very bored by the snow, it is pretty and white on Christmas cards but very hard to live with. I was born in England so I remember snow from there, cold stuff that small boys trickled down your neck...lol. Hope it thaws soon and there are some blue sky days for you to enjoy. Sue.

Lynn, detailed blog with photos please. Have a wonderful time. Sue.

Ruth, I remember when we had Mum living with us when she was in early dementia and Ray and I would have six hours off as she had a morning out and then a carer. We would do the special things that you and William do for your vacation day. I really looked forward to our special days together. Now Ray is too tired for that to interest him. We still have meals out but he wants to come home straight away. Enjoy your days out together, as many of them as you can manage. Sue.

:forgive_me?: Well Done :laughbounce: Bravo :Clap-Hands: You've done it! Started taking control of your own fitness :You-Rock: . I can see this being the next stage of your recovery. I rant about how Ray won't do exercise, simply does not see it as part of making his life ( and mione) better. I have fought hom for eleven years on it and still he would rather sit and read. :Rant-Off: Congratulations. Sue.

I am sick and tired of temper tantrums but Ray's is sulky silence. When are they going to realise how much we do for them? Is asking them to pay us back by getting fitter and stronger too much? I could continue this rant all day but I would run out of room. You are an amazing woman, you have learned to handle situations well, I so appreciate what you do for Dan even if he doesn't. (((Hugs))) from Sue.

Marcie, there are people here who have had their stroke early in life. If you post a question on lifelong stroke recovery some of them will surely answer. I am a long time caregiver eleven years now, my husband Ray has had five strokes. Like you he lost his supervisor's job after six months off after the 1990 stroke. But he worked for 81/2 years and then had strokes 2 and 3 four weeks apart in 1999, which retired us both, me to look after him. Welcome to Blogworld. As my blog says I use my blog to try and sort life out. Sue.

This week is the start of a new routine for Ray and I. He is going to go to Daycare twice a week, on Mondays and Wednesdays. The coordinator of Daycare selected these days and although I would have preferred Tuesday and Thursday I will accept her decisions. She especially wanted Ray to go on Wednesdays as there are a group of men there on that day and she thought he would fit in well. As soon as the bus came into the driveway today I recognised one as a former member of his stroke support group so they should get along okay. On Mondays I am going to do “me time” in the morning and visit to Mum in the afternoon. I will see her right after her lunch so she should be sitting in her chair and be bright and awake (I hope). I have to provide transport for Ray on that day. On Wednesday (today) I did shopping, then came home and did chat and then thought I would go to the beach. I decided not to go too far and went down to a little beach which is off a coastal reserve. It was the place we used to take the kids to swim when they were young as there are rock pools and it is shallow water mostly protected from the big waves. That was not the case today as the seas are very rough, still under the influence of cyclone activity across the Pacific and up off northern Queensland. The view from the lookout was lovely today so I stood there for a while and a younger man came and we got talking, just chat. He suddenly said to me: “Are you Pat’s daughter?” Amazing really that as a teenager he lived in the same street Mum and Dad used to live in and remembered me from back then. He knew my Dad died in 2000 and asked if Mum was still alive. We then did a roll call of who was still living around here and who had moved. I really enjoyed the chat, although he is mid-thirties it was like talking to an old friend. I decided to go over to the next beach and walk on the sand, which I did. The wind was blowing and although it looked tempting I did not walk in the water as I could see “blue bottles” small bladder stingers, and did not fancy one of those long stingers they trail behind them wrapped around my legs. They have a nasty sting, not deadly like man’o’wars and box jellyfish, but painful enough to make you cry. I had a few of those when I was young and am wiser now. I am so blessed to live where I do, on the coastal strip, two streets over from the beach, in the house that Ray and I bought together 40 years ago. It is not modern, or fashionable, it is a little run-down and needs some work done on it but it is our family home. Nothing like having that as a back-up in your life. My Dad died on 2nd January 2000, but he lives on in me. I am Pat’s daughter. I am also Marj’s daughter but only in the minds of a handful of nurses and other staff members where she lives in the nursing home and in the minds of those who survive of her old friends. At 92 she doesn’t have a lot who will mourn her passing. The parents of the young man I met up with today were neighbours of my Mum and Dad so maybe they will be at her funeral, who knows? I was thinking that I would move my chat time but I won’t, it will fit in with the new routine. I think we are a lovely group of friends who chat together now and I don’t want to change that. I am pleased that we have some new people in our group who have only chatted for a short time and only here at Strokenet. This is a remarkable site, unparalleled for friendliness and such a wonderful place to find when you feel surrounded by the dark clouds of stroke for the first time. The caregivers here are busy people and need that short time together to offload some of their problems, share information, share a laugh, feel for a while that they are among friends and can say whatever they want. We all share the commonality of lives suddenly changed, ambitions dashed, retirement plans overturned. There is also the reality coming in suddenly upon us as our lives are changed. I know survivors share all those feelings and have many more of their own. No-one has a “private stroke” we are all joined to the world and so siblings, family and friends are affected by whatever happens to us. Jeannie joined us today, survivor of her own stroke and now caregiver to her husband Carl. We have a few survivor/caregivers – what champions they are, I feel so privileged to know them. Maria is looking for another caregiver chat host. I will do it if no-one else can. But I am sure there are wonderful giving people who can step forward and share some of the joy I have experienced being a host myself. The Good Book says “it is better (more blessed) to give than to receive". I couldn’t agree more.

This is a vent so if you don’t want to read it skip to someone else’s blog. I belong to another site for spouse caregivers. On that site we tend to tell each other the bad things that happen in our day. We are all dealing with spouses with multiple disabilities. Doing so causes us a lot of anxiety and frustration so we understand when another caregiver says she can’t stand this or that behaviour. We’ve been there and done that so we understand. We often feel exactly the same way. I know it sounds negative to sound off about our partner/care recipient all the time. But remember that by doing it on that site we may be able to stand up to the next lot of difficult behaviour with a smile instead of dialing the nearest nursing home and asking can they do a pick-up urgently. Like all forms of support it is enabling us to go on caring for longer whatever the circumstances might be. I am having trouble getting Ray to exercise. As I’ve said elsewhere he has put on about twelve pounds since the beginning of December when the diabetic ulcer happened. Because he hasn’t been able to do the standing exercises he usually does he has done no exercises at all. So he has been sitting or lying down, eating really well over Christmas and putting on that extra weight. Ray has a lot of falls. Sometimes we will have two or three weeks without a fall and then two or three in a week, that was this week. We have Trevor living two doors down so he can still help out by picking Ray up. Trevor is big and strong and seems to pick Ray up effortlessly. He now has a job where he works from 4pm-8pm in a municipal building as a cleaner. Both falls occurred between those hours this week so I had to pick up Ray. Ray used to be able to help me with the lift using the stronger right side of his body to lift with the arm and push with the leg. This week he seemed not to be able to help me at all. I just managed both lifts but after the second I felt physically sick, so I know I need to rethink how I lift, when I lift and when I call the paramedics. And do I need to lift at all in an emergency, instead of maybe leaving him where he is till Trevor comes home? Today I asked Ray to do some exercises from an old exercise tape designed for seniors. We have used this one before on wet days. Ray said he didn’t want to do it because it was too hot! I just about blew like a volcano. That may have been because I had been cooking and was a little overheated myself. I explained that I have no intention of killing myself trying to lift him after future falls and he better get stronger so he can help himself. I know he just wants an EASY life, but so do I. There is no way I am putting him into a nursing home if I can go on looking after him but coping at this level is about my limit so he needs to be aware of that and make an effort to get better and stronger with enough strength in his good right side to help with the lifts. He also needs to know if he hasn’t a spoon they are in the kitchen drawer, his socks are in the wardrobe and if he has “lost” his watch he can look in the bathroom. In other words he needs to do some things for himself. It is so easy to slip back into “invalid ways”. Can you picture the old Granny or Granpa sitting in the chair rocking while the faithful daughter brought the lemonade out on the tray? She has on a pretty apron and we can hear the maid/cook singing in the kitchen as she prepares the family meal. Well that is pure Hollywood. It doesn’t happen that way here! Sure Ray gets lemonade, diet usually and I do bring him a glass out onto our verandah and sit by him with my own glass while he drinks his. Then I go back inside and go on with the rest of the housework. How much longer will it be possible to go on looking after Ray at home? Who knows? But I do know it does hinge on him at least trying to do some things for himself. .

Carl sounds like he is making real progress. Ray had a couple of good speech therapists too as he had problems with ch, sh, sk etc. One gave him cards and he had to make up sentences. I still have a tape of him speaking somewhere. Glad to hear things are coming on well now. (((hugs))) from Sue.

Lydi, the conversations you are having with yourself seem to be working to your advantage. It is hard to adjust to a new life, for a caregiver and a survivor , a life with limitations, maybe less rewards financially will be balanced with a lot of gains emotionally as you mature in your new philosophy. (((hugs))) from Sue.

Yep, I believe it took Erin a while to figure it out but he now knows what is wrong and how to compensate and keep you as a friend. I wish he could also go on Oprah and explain to all of our friends how to go through the process. What a smart dog! Glad it all worked out for you. Sue.

Thanks for the update and the helpful information. Ray had the special plate guard when he was in rehab but seems to manage okay at home. He couldn't get the hang of the rocker knife so I cut up his food for him. I agree about winter, if we have a wet and windy one I tend to go stir crazy too. I appreciate the warm days of summer but the very hot ones are not good for Ray. I hope the sun shines through for you soon. Sue.

Ray and I are praying for courage for you and Bill as you face the future together. Hope is a wonderful thing so try and keep hope alive.Ask your church to pray with you too, every little bit helps. Love you Karen, (((hugs))) from Sue.

Ray is home. I got him from the residential facility yesterday morning and remembering past times decided to make it a “do nothing” day. He sat inside, we both sat out on the verandah for a while, then we had lunch. After lunch he went for his nap on his bed. He got up for his dinner, watched some tv and went back to bed. I fiddled with bits and pieces around in the house, did some ironing, went out and swept the paths and gathered up the leaves the wind had brought down, before coming inside and cooking dinner…my version of “nothing”. Today we said goodbye to our favourite Carer. Jeff has been mentioned in a few blogs, he is a great person and a very professional carer. He is kind and attentive, speaks well to Ray, focuses on him and treats him with respect. Every move Jeff makes is to put Ray at ease. I wish there were many more workers like him. At one stage Jeff was our Tuesday and Thursday person but now, due to his own health problems, he has Thursdays off. We will miss Jeff as he has become a personal friend. Ray is now going to Daycare twice a week so his new Carer Chris will do Monday and Thursday and I will shower him Tuesday, Wednesday and at the weekend. It doesn’t sound much but it takes more than thirty minutes to shower and dress Ray and by the time we have breakfast an hour and twenty minutes of the day is gone. This means I will have to be on time on Wednesdays when I have to be ready for the Daycare bus by 9.20am. On Monday the bus goes north not south so I will wait till the shower nurse is finished and drive him there and pick him back up at 2.30pm. Ray will still have Ron on Friday mornings for three hours in-home respite but will no longer go to Scallywags twice a month as they require him to walk in. It is a pity Ray will lose touch with this group as they were his men friends, mates, co-conspirators, a replacement for all the mates who slowly, over the years, deserted him. We will still go to the once a month stroke support meetings though and hopefully stay to lunch with some of them and maintain some contact that way. That of course is not as good as belonging to an all-male group, sitting round, telling stories and laughing at each other’s jokes. The male company has been real bonus for Ray. Because of these changes I may need to change my chat night. I have been on Tuesday nights ever since I started as a chat host 4 ½ years ago so it is a big move to make. But there is no sense in having time off if I spend it at home. I am going to designate Monday as “Me time” and not shop or go to the pharmacy or make appointments for Ray. I am going to work out a program of things to do for myself including swimming or gym. I would like to lose some weight and build some muscle again so I will walk on the fine days too. I have been looking after Ray for a long time. We have done all the rehabilitation and where he would allow it we have followed up with exercises. Now with his foot problems his fitness is going and even a few steps see him wobbly and sweating. It is such a shame that he is losing all WE (me as the coach) achieved. Today Jeff walked him to the end of the verandah, looked at me and said: “Just back to your seat, mate, you can make it.” I just about burst into tears, it was so sad. I guess when Ray comes home after being away I see him as he really is. Day by day and week by week I don’t really see the changes. I know I am coping okay or I am not coping okay according to the illnesses or increase in disabilities we are going through. Lots of BM’s making lots of laundry and cleaning = not coping, then when that eases back = coping. Lots of communication problems = not coping, some thoughtfulness and cooperation=coping. Caregivers will understand what I mean. So it is onwards we go. I once commented on a blog who’s author called it “Onwards and Upwards” that onwards is as much as I can manage, upwards, pushing a wheelchair is simply “uphill against will”.