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New to dementia journey - Page 61 - Carers UK Forum

New to dementia journey

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938 posts
Hi Pet,
That is very annoying re hubby's chair especially as it cost so much. Have you checked the warrantee?

It might be easier to find out if there is a suitable pressure cushion to use with hubby's chair, I looked after a girl in Romanian who had dreadful pressure sores ( she had spina bifida and was a double below the knee amputee,) a specialised donated pressure cushion made all the difference.The tissue viability nurse might be able to advise.

It sounds like it going to be a tough week. (((Hugs.)))

Been a tough week. Days come and go don't they. Poor hubby is struggling sometimes to feed himself. Has to be assisted, although he will manage depending on mood, how tired he is etc. Its odd, I do try to prepare myself for these periods of deterioration, but I still feel like they are a punch in the heart. I certainly know the meaning of inner strength now.
Today, I intended to get on with things. Just couldn't get motivated, so nothing constructive has been completed. Another one of ' those days'
Sorry to hear that Pet. You're allowed to pause on "the journey", in fact, it's essential sometimes.
Well said BB.
I was thinking that Pet puts pressure on herself to be active and achieving when sometimes she needs just to be sad
Haven't posted for a couple of weeks. The same scenario, ups and downs. Hubby is eating less but hasn't stopped altogether. Some days better than others. Sometimes feeds himself, others he's needs help. I want him to be encouraged to feed himself.
Today, I visited, I go in with a spring in my step for his sake( although a knot in my stomach). I said in front of a carer that it's valentine's Day. The carers said Oh red roses for the wife. I said oh I don't want flowers love as long as you love me. He said yes. So, bittersweet feelings. Not that we bothered with Valentine's day for a long time. Always felt it was a rip off. Didn't need it.
Hubby' definitely going down the road of sometimes needing assistance with eating. I don't know if he can't be bothered, or forgets what he is doing.
Yesterday, he decided to pour his thickened drink into his box of tissues! Who knows why? Doesn't get easier, but I don't think I feel the shock I used to at anything bizzare.
I decided on Sunday that I must try to be stronger re my visits to hubby. Cut back a couple of days per month. The occasional 2 days together of not visiting is beneficial to me. I'm going through a painful time watching him deteriorate. Emotional strength sapping which I realise is not good for hubby, family or myself. Deep down I feel selfish and hard to admit. But there it is, I've admitted it now!
I don't think that's selfish, I think it's called survival. Sometimes it helps to think what you would advise someone else to do in the same situation. Funny how we are kinder in attitude to others than we are to ourselves.

Good decision. Well made. Time off is so important and doesn't make you a bad person. It just means you need time to recharge in order to cope going forward. I can't imagine how hard your situation is. For me it is my parents. It is sad, but it is the way it is supposed to be, parents getting older and declining. This happening to a beloved partner well before their time must be unimaginably hard. So be kind to yourself. And thank you for sharing your journey. It really does help other people like me.
Don't feel selfish. Think of it as essential self-maintenance. You know it won't help either of you if you run yourself down so much you have nothing left to give.
938 posts