In those two weeks things good and bad have happened to us. We have had rain storms with some flooding under my house, one of the windows in the cabin was broken by a falling branch, Ray's facility and Mum's facility have both been "locked down" due to a gastro virus and so I have been unable to visit. My daughter and two grandchildren came for a few days and went home yesterday and hadn't been able to see their Pa or great grandmother - what a shame.
I enjoy reading the Strokenet newsletter Lin Wisman produces for us. Please read it, every article can help you. It is something we all need to do, keep up our reading and read with a plan to learn something from what we read. I still research what is happening with Ray, reading up about seizures, new medications, researching anything that I think of that I can take back to the nursing home staff and say:"Could we try this?" I know I am clutching at straws but anything to make his life easier.
I am impressed by Lin's own story and the work she does to look after herself and how she is able to be an advocate for others through the Newsletter and in her own blog here, please read what Lin has to say. She copes alone with very little help now, she does live with her sister so has company and she lives a full and interesting life, involved in family and community matters and of course volunteering on Strokenet. If you have the time why not volunteer here? I have been a chat host for going on six years and the Blog Moderator for a couple of years and honestly it is no burden to carry.
I have never been happy with all the things that have hapened to Ray - seven major strokes and all his other health issues have taken a huge toll on him but being a realist I realised long ago I just have to make the most of the life we have. I sometimes look back and wonder if I could have done more for Ray but of course I couldn't have, all the professionals kept telling me that he was too high care for him to continue at home. The circumstances were against him health-wise and to have survived as many strokes as he has is amazing in intself.
Now I have to accompany him on the rest of his journey to the best of my ability. I have tried hard over the past thirteen years (anniversary of his really major stroke was 19th April) to keep positive, to look at what he has got rather than what he had lost, to see what we could do in our lives to be happy and fulfilled. Like most people I have often failed to reach that high mark I set for myself but at least I tried. But it breaks my heart now when he asks to come home. If I had the money to set up a heap of care he would be home. It is not for want of planning and scheming it is just impossible to put into practice.
I have missed not visiting him every day while he has been in "lock down" and am praying that soon this viral epidemic will be over and we can go back to our old routines. I want to make his stay in the nursing home as good as I can . I don't know if what I am doing is making it easier for him to live there but I sure hope it does. It is so sad we are parted but nothing i can do or say will change what our lives have become.
I have been on this site since May 2005. That is a long time, a lot of posts answered, a lot of caregivers supported and encouraged, a lot of new people met and some friendships formed and some dissolved as of course people do move on with their lives. I have always blessed the day I found you all. Who knew that some of my best buddies would live so far away and I would have more connection to them than to people I see every day? Bless you all. Even when I leave here I hope to keep the friendships going on email and Facebook and you know you have a friend in the Land Downunder you can visit with anytime.
I am slowly changing the way I do things now I am on my own, not that I want to change so much as I HAVE to. There are financial constraints on me now as so much of our savings will be used to pay for Ray's Nursing Home care. I am no longer an active caregiver 24/7, for sure I am still Ray's carer, there to be with him most days but that is not the same as being the person who washes and changes him, who gets his meals and sees the doctor on his behalf. I do oversee his care but a lot of it is beyond my control now. There are not a lot of other people at that stage posting on Strokenet as yet so to a certain extent I am on my own.
I still go to the two main support groups I have been involved with but am dropping out of the dementia group now as to a ceertain extent it is more for beginners and so a lot of what is said is not relevant to me. I enjoy the little support group at Mum's Care facility as I see the ladies who come and visit on a reglar basis when I visit Mum, and as a couple of them deal with husbands who have recently gone into care we have our early struggles in common.
In twelve months or so I will have to make some new decisons, whether to move or not, if so to what kind of accommodation, what size and configuration. Ray has been in care over six months now and I am just coming to terms with that. I am still blogging about my life as I think others will one day walk the same path and maybe something I say here will resonate with them. I hope so. I wonder if I will drop out of a couple of other things I belong to including the stroke group WAGS that Ray and I got so much joy out of, I still have friends there but again I have moved forward into a space they cannot as yet follow me into. It is a transitional stage I guess and so I feel uncomfortable, not quite as I was, not yet knowing what I will be.
Do still pray for us, Ray and I. I know he is still uneasy about where he is, it will never be home to him, but then would he be able to appreciate being back at home with me, an overworked caregiver, anyway now? I doubt it as he so dependent and I would never be able to keep up with all the nurses and other staff do for him around the clock. If only I could....
And so the transition goes on, wife and mother to old wife and grandmother, caregiver to nursing home visitor... and probably other transitions too that I do not see but others observe in me. And all under God's care with the loving support of a great unseen network of friends and well-wishers. I am so fortunate and so blessed, I just have to remember that in the bad times ahead.
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