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how good is well



"Ray is doing really well." a lot of people seem to be saying that to me lately. With some of them there is a lot of wishful thinking involved. If Ray is well they can back off and stop worrying about us and go about their own lives again. This applies to the kids and the couple of more distant families members on Ray's side, people who really do care about us. I appreciate their concern and I know how long all this has been going on for. Ray's illness has been a bit like those old time radio shows, a long drawn out affair to say the least. And those who wanted it to all end "happily ever after" have just stopped enquiring.


So how well is Ray doing? He is not back to standing alone to shower, his process thinking seems a little less accessible, his willingness and ability to do some of the tasks he used to do, such as the lighter washing up of the few lunch time dishes seems to have disappeared too. Thanks to the physio he is beginning to walk with his weight more evenly distributed, a guarantee against falling as often. Nothing is going to stop him from having falls, we all know that. But the less he falls the less likely there will be more broken bones. And long periods of hospitalization.


Today he had a shower nurse shower him, then we went shopping, came home and had lunch, then went back down to the physio who is in a building at the back of a small hospital just beyond the shopping centre. After carting building materials to the bins yesterday for the clean-up I was glad to only have to load and unload the wheelchair twice as my back is still sore from the pulled muscles on Friday. Another few days and it should be "normal" whatever that is.


I could hear the physio arguing with Ray as he tried to get him to weight bear on his left leg. Ray could do that for a very short period of time before the fall, now he does not want to do it at all. I can understand that. There is a neon sign flashing on and off in his brain saying:"WHAT IF I FALL?" so he doesn't want to do anything he sees as risky. The physio is a muscular young man and I am sure could prevent Ray from falling but Ray's brain does not want to take that chance. He was really rigid with fear and could not relax. They are going to try again next week. I will try to reassure him before we go, that it is okay to do what the physio wants to do as he will catch him. I just hope that is TRUE.


The last two weeks we have been back to the episodes of incontinence, mostly of a minor nature but for some time Ray was dry and clean all day. The shower room next to the toilet is a real bonus for those "have to have a quick shower" occassions and I am so glad it is operational. Bless all those who gave of their time to make it happen. But the big fear is as always what will happen if "it" happens when we are out and about. Just the thought makes me shudder. For those of you who cope with this all the time, ignore my venting here.


Our visit to the doctor on Tuesday left me with a new dilemma. The doctor and his wife had been away for a short break, flying down to Melbourne and going across to Kangaroo Island. It is a delightful place, we went there three years ago. The diversity of wildlife and bird life makes it a "must see" for nature lovers. Anyway the doctor was telling us about his holiday and said that of course a holiday like that would be no good for Ray but he could see no reason why we could not resume going on our bus trips again. WHAT??? Ray still not weight bearing properly, with the added stress of a recent fall etc etc? Of course Ray's eyes lit up and he turned to me with a knowing grin as if to say :"See, I am well again."


Now what do I do? If I do take him on a holiday there is so much work involved just to get up, pack up, set up the insulin etc before a breakfast that is usually 7.30am and departure at 8.30am for a tour of the local beauty spots or the drive to the next overnight stop. Excluding the inconvenience of steps everywhere, small pebbled driveways, blocked off doorways etc that slows this process down, it is still a lot to ask to expect me to push him from far distant rooms across dew-sprinkled lawns to the dining room, or down long winding corridors to a breakfast room. In the past I have set the alarm as early as 5.30am to get the shower etc in. I think it is asking too much now for us to keep up with able bodied people, albeit elderly ones. For bus trips you do have to have a certain amount of stamina and as yet Ray does not have that.


On any trip there is the problem of the wheelchair and the luggage, so I have to make several trips to get us to our accommodation. Then there is the "sorry, we do not have a disabled room for you, dear" excuses that means I will have to try to balance Ray with one hand while using the other hand to hold the shower hose and hose us both down, that is unless there is only the overhead shower rose. Then I position him under it and just dodge the deflected soap etc. You all know all this stuff, if there is no disabled room we, as caregivers, have an extra load to carry. Add varying surfaces, strange combinations of furniture etc. heavy drapes that necessitate having the light on all night etc. Not what I would opt for as a restful holiday. But for Ray, sitting in the window seat and watching the world go by it is a different matter.


I do get tired of trying to live up to other people's expectations. I do as much as I have the time and energy to do with Ray. It is a case of: "The difficult we do at once, the impossible takes a little longer."


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So many things about your post concern me. Concern me because I have grown to love you as my sister.

Concern me because we share a bond in the complications our husbands face due to stroke. Concern me because I see myself in you and so I know how you feel, trying to meet others expectations - and your own unrealistic expectations - regarding your (our) own limitations.


First, I face the "he looks so good" comment from Bill's mother constantly. Yes he "looks" great - why? Because I help him look that way. I insist he choose his shirt, or he would not make even a choice - using the "I don't know" response so easily held within his grasp. If I would allow it (that's an awful term to use) I would shave him, shower him, dress him...the whole shebang everyday. It's a darned brain issue, I know, but it is frustrating none the less.


Secondly, the "accidents" are so scary. I'm now using the "go sit down for a little while" line after Bill eats. He doesn't ever "have to go", however, he does...That's the suggestion I got from reading about bowel incontinence on the web. It's also the tactic I thought I should take before reading it - unfortunately, it's the tactic I learned when my children were about three years old - and I have fought tooth and nail, denying I would need to take it with my husband. Facts are facts though, aren't they?


Third, travelling. Hang the doctor from the highest limb. I'm tired of people telling me how great it would be to travel, seemingly not understanding who it is who does all the packing, unpacking, maneuvering, lifting, carrying, meeting deadlines. It does work when we can go one place and stay put - like we did in Florida. It doesn't work when all the "equipment" has to be unloaded and reloaded everyday. We have to face the reality that our bodies are aging too. Ten years ago it might have been fine - but I can't risk injuring my back in order to make everybody else - including my husband - feel like everything is just ducky. It isn't.


NO, I'm not suggesting not travelling, not going out of the house, eliminating any life for you or Ray - or Bill or me. I'm suggesting we are the people responsible for caring for our mates and ourselves. If we don't advocate for our health, nobody else will. (Read about my recent experience in my blog...)


Anyway, my friend - we do what we can, we do more than we can and we do it 24/7/365. My adage - "expectations are the first thing that lead to resentments" is so true. Until we can let go of the unrealistic expectations we place on ourselves we won't have any peace of mind or serenity.


Love to you,

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Traveling with someone in the beginning stages of dementia really isn't a smart thing to do. The unfamiliar surroundings and routine can be upsetting and disordinating, making it worse. What in the heck is wrong with a doctor who doesn't understand that?


Lots of people do travel with wheelchairs in tow and enjoy it but I'm like you, the extra effort for me is too much work and I won't do it. With us having no kids or grandkids to come and bail us out if something should happen to my health along the way it's a scary thought to be somewhere far from home and get stuck there. We have friends from speech class who travel with wheelchair husband's in tow but it's not for me. I let it roll off my back when the expectations of other suggest what I should and shouldn't do. You only have to please yourself and Ray, Sue. Don't let others who don't understand affect you.



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Sue, you do an amazing job caring for Ray. It is a frustrating cycle with strokes and aging. For the first few years the survivor heals, and gets better, and then when aging sets in, we begin to lose ground, both the survivor and caregiver. Stay well Sue. -Karen

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