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New to dementia journey - Page 43 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
936 posts
Oh, Pet, I wish I could think of something comforting and uplifting to say, but I can't, not really. As you say, treasure the little moments that remain, and take what consolation you can from knowing that when he sleeps, he's peaceful.....

There is no easy way to 'let go' of someone we love. Whether it happens 'out of the blue' as it did for me, or the 'slow withdrawing' like the tide of life receding, as it is for you. No easy way at all.

Kindest wishes, in ever sadder times, Jenny
Thank you Jenny.
Todays visit was better. More alert, and we even spoke about the election. He said it wasn't a hung parliament, lol. I just went along with what he thought had happened. This is the man who would have understood far more than me.
He also made me smile. I said the floor has been polished outside his room.,( It wasn't slippy) He explained he had done it!!! Oh I wish, but never mind, he thinks he has been busy again.
Was quite nice too when I asked him if he was tired.Answer, I am but you help me to to sleep. I refrained from asking if I was that boring! It was said with affection, so another moment to treasure.
That sounds much better! I think it's very touching he said you helped him sleep....:)

Hope this 'upturn' continues for the next few visits at least.
Yesterdays visit was lovely. Today was a sleeping over his food, and couldn't find his mouth properly day. I only stayed 1hr and 15mins,. Couldn't hack seeing him like that today. Fighting tears, and fighting guilt monster for leaving after such a short time. So sad. Have had these days before. I'm sad and angry and grateful that he being cared for. Mixed feelings.
I mostly feel torn and tearful walking away from the home where my own husband is. Not so bad if we've had a nice visit, but my husband quite argumentative and resentful today. If he's out of sorts, then so am I. We just have to hope for another of the better days soon. x
Today I had a very pleasant visit. Hubby not sleepy and quite lucid. The activities person encouraged residents outside and did a sort of tea party to his credit. Hubby didn't want to go( sigh) but we had some of the food. I didn't really want it, but we ate together and it was nice to do so. I decided to leave on the ' high' even though felt sad at doing so.
The head manager saw me and asked to speak.
1 the shower chair wasn't suitable, so I'm glad I didn't rush into buying one.
2. The staff are concerned, that in the mornings his foot is hanging out of the bed. Seems he tries to get up to tidy round. They want to try the side panels. I know, really I do, that his safety is paramount, but it knocked me back, thinking of him in a cot!!
I know you will think of it as a cage, but if it keeps him safe, then that's all that matters. Brian has a hospital bed with sides that can go up and the carers used to put both sides up before they left in the evening but if he needed to go to the loo lateron, I found it difficult to get one side to go back down and now he onky has one side up.. He rolled out of the bed quite a few times before we were given the hospital bed.

Don't worry about it. It will keep him safe and that is all that matters.
Keep your chin up.
Irene yes, safety paramount for hubby. So far nothing has happened though? He has to be assessed for them.

I couldn't go yesterday, mix up with buses and very few taxis because of Eid celebration's. However my grandson visited. Just as I was feeling settled with the staff I find that his food wasn't cut up again. Grandson said he was struggling and gave up. I had a guilt kick at not going. Cried. I phoned the unit, and said. The worse of it, regular staff were on duty, not agency. The member of staff who answered ( working on the top floor ) said she always does. Well I know most do, but they all need to. There's a polite note on his door, and one in the kitchen. This may seem grumpy and trivial, but how many times do I have to remind them.
Moan over.
I have the same problem when Brian has to go into hospital. The staff never think to cut up his food, the bed table is put on the left of the bed where he can't reach it with his right hand. The nurse call unit is forever being clipped onto the left side of the bed.

Surely it only takes a wee bit of commonsense to realise that a patient who has had a stroke and has no use of his left arm, needs everything on his right side and his food cut up. I get fed up reminding staff but it seems to go in one ear and out the other. Someone on here once said that you have to be reasonably fit to survive in hospital and this is true. Heaven help anyone who hasn't got family to speak up for them.
my, now deceased, son had cerebral palsy, and during one of his stays in hospital, when he had pneumonia, I had to go home for an overnight 'break' - I had other children, and I was exhausted. returning the following morning another child told me that my 'little boy has not had any breakfast' when I asked the staff, I was told that it was put in front of him but he did not eat it!!

When I explained the extent of his disability, I was told ' we are trained to make sick people well, not to look after disabled people'.

How did my boy feel having his breakfast come within sight of him, only for it to be whisked away and him go hungry???

Happens only too often I am afraid
936 posts