need to shape up
I need to shape up. I have slumped down for too long feeling sorry for myself. I need to get out more, not to the usual haunts but maybe to different places, places I would once have gone for rest and relaxation before being confined to the house with Ray's illness. A friend told me that in a stern voice yesterday, my fault as I had asked for her advice. When you ask for advice you do lay yourself open for others to take a bit out of you. This friend is honest in the extreme, which is why I value her opinion. She just tells it as she sees it. And boy that smarts sometimes. But she is also a widow so she does know my pain.
It is hard being on your own, making decisions about your own future. That is why I want the kids to discuss things with me. But ultimately I know the decision-making is down to me. It is my life. I am only just emerging from what has seemed like a fog. It is hard to explain it to people who have not been through it. It is as if you see faces through a mist and hear people but cannot assimilate what they are saying. Sometimes it is like I have been in a dark room for a long time and when I go outside the light is too bright, the voices too loud. I know others probably see me as "normal", they hear me laugh as say they are glad I am "coming out of it now". As if I have been ill or unconscious for a while.
I am assured by others that they know what I am going through. Do they heck! We are all individuals and we all grieve in our own way, we all feel our own pain, we all tread a similar path but do it in our own time. I am missing the time spent with the grief caounsellor as she saw life in a text book plus shared experience kind of way. She did not know exactly what I was going through but did know what people at my stage of grief generally went through. I stopped at six sessions as I didn't want to be someone who was constantly in therapy. There is a bit of pride in that I guess, I want to be independent.
I went to the Stoke Recovery group meeting on Saturday, there was no guest speaker so the co-ordinator asked if we could help her to flesh out a presentation she is making to a national conference. She asked questions and the group answered. On the whole we agreed that person-centred care is often in name only, consulting the caregiver often doesn't happen and the information flow is not as good as it could be. There were horror stories, mainly about buzzers out of reach and patients left in their own...well you get the picture.
I did mention the wall that goes up when the word "Dementia" enters the notes. I had too many occassions when some staff member said: "we would have given Ray such and such treatment, only he has dementia". If that happened I always emphasised that although Ray had dementia I didn't so as long as I knew what to do with him, I could repeat the exercises at home. Sometimes that worked sometimes it didn't. Some staff just seemed to want to write him off. We do have a tendency to write off dementia patients here and if stroke is the dominant feature why is that not treated? After all a body is just a body, if the person without dementia needs to do certain things in order to get well so does the person with dementia.
When she asked if there was any after care problems I would have liked to have mentioned the lack of grief counselling but I didn't want to introduce a topic a lot of them are not ready for yet. The saying about not jumping the gate until you reach it came to mind. I don't think caregivers put their heads in the sand but they deal with so much trauma day to day they don't want to think too far ahead. I know I was like that, today and tomorrow were always more than enough for me and next week was just written in the diary so I wouldn't forget where I was supposed to take Ray.
How does a past middle aged woman reorientate herself to a new life? I have had some helpful suggestions from other widows. Travel is seen as a panacea, or new hobbies, joining the gym, reconnecting with old friends, going to see more distant family etc. I think it depends a lot which generation you are in. I am going to do some travelling, one overseas trip, then some little trips to catch up with old friends. I don't know at this stage whether Ray's brothers and sisters want to keep in touch, no-one has said they'd like me to visit or that they would be visiting me. Maybe they don't know how to change the relationship either and that is another thing I will have to take slowly. How long do your friends need to adjust to the fact that you are on your own now?
So I will visit those who have extended an invitation. I guess this is another time when you accept the friendships offered rather than grieving friendships lost, or maybe you do both.As with all things it is hasten slowly.