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A page in the diary "Sue's thoughts on life"
Written by suew Wednesday, 2 June 2010 12:07

Hello all, I am home again and of course life is the same. When I saw Ray in the car with our son when they came to pick me up I thought how old and frail he looked. I guess even a few days away makes us conscious of changes.

I will try not to let Ray slide back into old bad habits so have laid some new ground rules about exercise etc. But he has dementia and tomorrow will do all the things he promised not to do today. Apparently he did have quite a lot of incontinence while I was gone and a couple of falls too. He is having the MRI on Thursday so I might know more about what is happening when I see the neurologist again mid-July.

I explained to our daughter when I saw her and her family that I know that I have been finding it hard to cope the last month or so and we will not always be together. If it gets too much I will have to find a nice place for him to finish his days in. Coping right to the end is not always an option. I don't want a sudden breakdown in the care I give him be the reason for his going into a care home and I don't want the family to say: "But we thought you were coping Mum."

Like a lot of other people I keep saying I could do more with the family's help but I don't think that is the case any more. The best plan is probably me plus some outside help rather than them looking out for him reluctantly and maybe not as well as I can. Dementia care is pretty complex and so professional help is sometimes needed.

Yesterday was a tough day and got worse as it went on. Last night we went to our Lions Club dinner and half way through dinner Ray went off to the toilet. I waited and waited outside to help him with the door and in the end could hear him yelling out: he was stuck in the toilet, couldn't get up and the door was locked. Luckily it was a half door and I slid under it. He was soiled so I tidied him up as best I could and we finished our dinner before coming home for a shower. It is coping one day at a time now and hard to do long term.

I sit in chat here night after night and no-one comes on. Maybe even having a diary here is a waste of time as there is no-one on here to share it with. I am feeling the isolation more and more as Ray's behaviour deeply affects now where we go and what we do.Changing him while we out is just one of the many problems.

Okay, time to quit the pity party and do some more housework.

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Comments from the community :

Just had a day of takng Ray for scans and xrays as he has had some days in pain following a fall. No conclusive evidence of anything wrong but he has pain from his waist to his little toe on the left hand side.

His walking is more like shuffling and the doctor says it is time to consider a nursing home. I am not ready for that yet but know that the load is getting heavier.

Written by  suew, Thursday, 10 June 2010 22:12

Ray is still very shaky on his feet particularly when he first stands up. His left leg also shakes more frequently now. When some bruising appeared behind his left hip I thought that could be some of the problem. I thought of cancelling the bone scan but have decided to go ahead with it. Today I gave him anti-cramping medication mid-afternoon as he was complaining of cramps again.

As each new problem arises I try to find a solution, to cope with the reality of it and find work-arounds etc. In some cases there are solutions in others there are not and I am back on the road to aceptance again.

I have been debating on the subject of burnout on another site. I think we use the term too loosely, as some people use the term "flu" for every passing head cold.

Most of the carers I have encountered on this site have enormous strength and courage. I am proud to be associated with them and hope I can be as brave and strong as you all are.

Written by  suew, Monday, 14 June 2010 22:47

Sue are you linked into a Carer Support group? Sounds like maybe you need to talk to other people who are going through the same thing so that you feel you are not alone.

Written by  alisone, Wednesday, 23 June 2010 14:37

Hi Sue,
Maybe you should call your Carer Respite Centre and see if they can offer you any extra, in-home, respite care. Every region has one - 1800 059 059 should put you through to your local service.

Written by  alisone, Wednesday, 14 July 2010 12:42