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all the tomorrows

A page in the diary "Sue's thoughts on life"
Written by suew Sunday, 2 August 2009 23:20

Hi all, I have just been sitting here feeling a bit lonely as I sometimes do. You know that feeling too I'm guessing. Loneliness, the last feeling before acceptance. I feel sad, I feel lonely, I give myself a talking to and I accept where I am, right now. It doesn't work every time but most times it does.

Sometimes I sit here and think about all the tomorrows ahead of me. I know you will say I should live life day by day and mostly I do. But sometimes I look down a narrow corridor and shudder at the darkness gradually encroaching on the life that I share with Ray. We have been on the same level for a while now and I know how quickly that can change

I am always glad when someone comes on chat and I can have a conversation about other things. That distracts me from the thoughts that can plague me at night. Not a lot of people you can ring and discuss this disease and all its ramifications with late at night is there? That is if you have people in your life who are comfortable with that.

I've been on this journey with stroke for ten years, it is four years since Ray was diagnosed with vascular dementiaand the neurologist said: "Enjoy the next six months, things might deteriorate rapidly after that." He was wrong, things did not deteriorate rapidly, just slowly as Ray lost some more memories, became less mobile, could no longer access past knowledge etc. He is much less flexible now than four years ago, both in mind and body. This also means he is a good deal less portable and needs much more done for him. Things change and they don't change back.

Of course Ray is still nowhere near the end stages. I know that from observing my Mum who is probably five or six years ahead of where Ray is right now. Mum still walks without a frame or stick. Ray still walks with his quad stick, but very slowly and uncertainly. Mum has no language or communication skills. Ray can still converse, though he often will answer rather than initiate conversation. And mostly in answer to a question he says: "I don't know."

Sometimes it is hard to be upbeat when so many things are worrying me, but I still try to laugh and joke and be happy. No-one wants to be around a sad sack.

Tomorrow it will be Monday again and I will get up and do housework and phone the care service provider to discuss a few issues, and maybe find the time to clean the front windows as they badly need doing and we are going through a patch of warm, dry weather, ideal for this job.

And in a way I trust that tomorrow will be like today and yesterday, no dramas, no extra worries, just a day we can look back on without regret. One day at a time, that is the only way I can deal with Ray's dementia.

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Comments from the community :

hi sue, i know what you mean about loneliness, can have a house full of people and still suffer it. i tell myself to pull myself together and try to plan something which never works, i find the best cure is a good laughing movie or tv series like two and half men often picks me up. also getting the answers right on hot seat, picking cases on deal or no deal to see who wins makes everyone in the house join in. these are just some of the things i find pick me up. it is always the little things that count when you go though want we go though every day. they say if you smile at somebody it makes them smile too that gives me a giggle when that happens. so smile and get others to smile with you. if none of this works find a funny book, or write a funny book. just some ideas to help the days pass by. cheers laure
sorry i missed you tonight

Written by  laurel, Monday, 3 August 2009 02:19

Hi Sue, you have already been a carer for a very long time, probably longer than most carers of dementia sufferers. Do you have much access to respite, I mean like for a week, so you could have a holiday or just do something for yourself? I know it's not the answer, and you still have a long road ahead, but maybe this would help get you through. Sometimes even the planning of a break away can be enjoyable and it gives you something nice to look forward to. Anyway, thinking of you ...

Written by  tiserowi, Wednesday, 5 August 2009 12:31

"There is no light at the end of the tunnel for long term carers, luckily there are people holding candles to light our path. God bless them all."

I wrote this on my Strokenet blog "Sue's Sentiments" yesterday. There are no final solutions as I see them , it is the people you meet that form those positive interactions that make a carer's life worthwhile.

I hope all who read this are having a good day

Sue.

Written by  suew, Wednesday, 5 August 2009 18:10