events we cannot control
I have been having the dreams again, dreams that have the theme I can bring Ray home if only I...and that is the point where it all goes foggy, the answer is out there I just can't get to it. I know why this is happening. I had a conversation with one of Ray's room mates before I left the Nursing Home on Thursday. *N* doesn't have dementia but he does have reduced cognitive function due to lung problems though so he is sometimes oxygen deprived and muddled in his thinking.
He called me back to say Ray wants to say something to me urgently. He said to Ray: "Go on tell her what you want to tell her." Ray sat and looked in the other direction, seemingly unaware of what was going on.
Neil said: "Every couple of nights he wants someone to ring you, to say that he loves you."
I asked: "Are you sure it is what he wants to tell me? I am here every day and he has never said anything like that."
"Of course that is what he wants to do" said Neil.
I know Ray wants to ring me just as he rang me from the other hospitals. Once again he wants to say what he has always said on the phone when someone rings me on his behalf :"Come and get me, I'm finished here now."
I always say: "Not right now, the doctor wants you to get stronger first." It always leaves him confused and me in tears. Dementia creates so many scenarios that are so sad. It makes it very hard to get through some days.
I've copied this from another site I posted it on. It has bothered me a lot but because I was occupied with thoughts of the new baby it didn't seem so bad at first. The birth of our grand daughter was more important. I thought it would bring us a lot of joy and I am still sure it will. But not for Ray. In the end it comes back to the same theme, Ray wants to come home and I cannot bring him home, therefore my brain tries to replay the scene over and over while I am asleep. i don't think anyone can help me with this it is something I have to work out for myself, to reach for acceptance of what is present reality and not what I think I can do in my dreams.
The life on my own is not what I want. I know my options are limited now and I try to do the best I can with what I've got. I've got more time but less money. I have options for what I do outside of the time I spend visiting Mum and visiting Ray. I have time to think my own thoughts and do small things I want to do, gardening, craftwork and housework as needed. I do not have the freedom to choose a new life for myself or abandon the old one.
From the place I was at when I was a 24/7 caregiver I guess I thought I would have more freedom and that would be great. I did not realise it would be so lonely and somewhat unbalanced. It is nothing like someone thinks when he or she thinks about life after being a caregiver. It is much like the time your loved one spent in hospital without the thoughts of them improving and coming home again. There is no chance of Ray doing that. I see the deterioration caused by the seizures, the TIAs and all that has happened to him since his initial hospitalization.
It is almost twelve months since he went into hospital after the initial stroke on May 30th 2011 and the falls that seemed to leave him in a lot of pain and unable to stand properly. I've read back through those blogs from June 2011 and see all the angst this caused me as I struggled to find some way to bring him home, some way to get the extra care I needed. I still go over and over what I did wondering if I had called this organisation or that authority if I would be able to have got enough help to have brought him home. But there was always a brick wall at the end of every path that seemed to lead in that direction.
I look at Ray now and I see his often blank expression, I see him struggling with eating, his good right hand shaking and the food almost dripping off the end of the spoon before he can get it to his mouth. I know he is doubly incontinent, hasn't a clue what he is being asked to do most of the time and without a lot of help would not be able to live even the kind of life he is living now. I am glad I found a safe place for him where he receives reasonable care and good food and is warm and safe. I just know he longs for more than that, that feeling of being "home".
I wonder when we stop feeling guilty for what happens, for the things in our life that did not go the way we wanted them to. When do we forgive ourselves for all that we thought we could do but in the end could not do? Maybe it is just a part of the human condition.
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