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Caring for elderly relatives? Supercarers can help

Husband in a nursing home

7 replies

Whatasadtime · 29/04/2024 21:57

Don’t really know where to post this… husband has a brain tumour, it is slow growing.
But he’s had all sorts of complications and now has brain damage. He’s in a nursing home as he’s physically and mentally very unwell and probably will stay that way for a long time. It’s currently not terminal.
He’s 58 and we have 2 young adult children.

i don’t know how to feel other than just so sad. For him and for us. Part of me is really relieved I don’t have to look after him and part feels so guilty that I’m doing things he can’t do.

Visiting is hard and he’s forgotten it the second we leave.
Don’t really know what responses I’m looking for - just such a difficult situation

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Rocknrollstar · 29/04/2024 22:06

DD really made me feel better when she told me that even if the person you visit doesn’t know you they are left with a good feeling because they had a visitor. I think your husband probably feels better for a visit even if he doesn’t know why.
you shouldn’t feel guilty. You still have a life to live and should get on with living it.

Whatasadtime · 29/04/2024 22:09

Thank you for your kindness @Rocknrollstar you have just made me cry but in a good way x

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PermanentTemporary · 29/04/2024 22:10

That is extremely tough 💐 I do know someone in a very similar situation.

After my husband died I knew one thing for certain - he would want me and ds to be happy. Look for things that make you happy. Quite small stuff in some cases, big stuff in others.

What are the visits like - is there anything at all you can enjoy together? Food, chat, music, photographs, fresh air?

Whatasadtime · 30/04/2024 06:45

Visits feel hard because I’m living the life we had and he’s living with people 20 + years older than himself, many with severe dementia.
He is very much like he was but with a 30 second memory. He has nothing to say and I can only talk about things that he was doing before

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Musicaltheatremum · 30/04/2024 12:28

@Whatasadtime

Oh my heart goes out to you. My late husband was diagnosed with a low grade"benign" (haha😢) brain tumour (Astrocytoma grade2) in 1999
He had radiotherapy then further stereotactic radiotherapy then chemo.
He was great for a few years but gradually memory started to go and subsequently he had a bleed into the central part of his brain probably due to the long term effects of the radiotherapy. He couldn't walk or care for himself at this stage.

He was discharged home for care from the hospice with " we don't know how long this will go on for"

"Fortunately" it was only 3 weeks because I don't know if I could have coped.
I think I too would have moved him to a NH if things had gone on. My daughter was nearly/19 and away from home and son nearly 17 and just about to sit his highers and all of a sudden we had hoists and hospital beds and carers in. Very disruptive.

It sounds as if your husband has a lot of damage due to the tumour+/- treatment. The loss of the person he was is so very very hard. I went from being a wife to being a carer. Even in the 5 years before he died when his memory started to go it was so hard. My children did struggle especially my son with the loss of a proper father figure.

Be kind to yourself and don't judge yourself about how often you visit or what you say. You are already grieving and strangely it meant that although I was heartbroken when he died I was relieved too.

It saddens me that treatments for brain tumours have really not advanced in the 12 years since I lost my husband and I think it is such a cruel illness and many years of quality life are lost. My husband was 38 at diagnosis and was a lawyer at the top of his field when he became unwell. He stopped work at 41 and died 6 months after his 50th birthday and 100 days before our silver wedding anniversary.

It is a cruel horrible disease and I am sending a hug just to say I understand where you are.

12 years on I have done well and come to peace with things. I had a good career so threw myself into that and I have re-married. My children are 31 and 28 now and have had a lot of counselling. It's hard losing a parent in your teens. They are ok now but my husband has missed so much of their successes.

Look after yourself and treat yourself to some good times. You deserve it.

My apologies for rambling.

helpfulperson · 30/04/2024 12:38

What about doing a jigsaw or similar? Even if he can't help it is a focus and allows for conversation that is in the moment and doesn't need memory. Or watching TV with carefully chosen programmes. Home programmes or gardening work well with my mum because conversation can be immediate eg isn't that lampshade ugly, what a pretty colour of rose etc. Or reading to him.

Whatasadtime · 01/05/2024 13:35

Thank you everyone, I didn’t really know what I wanted from this thread but you have all helped.
It’s been three years since diagnosis, should have had more good times as a family , but the deterioration was always coming one day and that was always scary.

@Musicaltheatremum I so sorry, it sounds like things were really tough for you, especially with young children. I lost a parent at a young age so I know that has a lifelong impact - so many occasions when they will have missed him being around and I know you will have been trying to make up for that.❤

The awful things about brain tumours is both the suddenness with which your life can change - like your DH, mine was working at a senior level and was physically very fit - but also the changes that then come in their personality and functioning.
That’s really hard to deal with.

Thanks again to all of you

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