Young Onset Dementia - Bleed on the brain - Hospital visits - First Post

[Judy JT]

Hi this is my first post, and wondered if anyone, has been in a similar situation. My boyfriend was only diagnose with Young Onset Dementia, last year, and his health deteriorated very quickly. He does not live with me, and lived on his own , at the end of last year he started having carer, coming in to help look after him. At the end of last year, he collapsed at home, and hurt his ankle, and was admitted to hospital, he spend a month, in hospital, before coming home, to extra care, for him to collapse again, with a bleed on the brain, and he was admitted to hospital again, and he is still there. He has changed so , much again this year, he has only got limited movement, and is struggling to swallow fluids, and eat. I have now been informed that it looks like , he will be in hospital, for at least another couple of months!

I have cut the hours that i was visiting the hospital down, because it was wearing me out emotionally and physically, and I have to still got to go to work ! i am only in my 50's !

We were hoping that he would be moved to a care home, but have been told by the hospital, that wont happen , unless he can drink more.

How do people cope with working and trying to be support your loved ones ? and the feeling of guilt ?

 

[Banjomansmate]

You have to accept that you can only do so much physically to support them and survive yourself. If you knock yourself up then you are no use to them.

 

[Palerider]

Hi this is my first post, and wondered if anyone, has been in a similar situation. My boyfriend was only diagnose with Young Onset Dementia, last year, and his health deteriorated very quickly. He does not live with me, and lived on his own , at the end of last year he started having carer, coming in to help look after him. At the end of last year, he collapsed at home, and hurt his ankle, and was admitted to hospital, he spend a month, in hospital, before coming home, to extra care, for him to collapse again, with a bleed on the brain, and he was admitted to hospital again, and he is still there. He has changed so , much again this year, he has only got limited movement, and is struggling to swallow fluids, and eat. I have now been informed that it looks like , he will be in hospital, for at least another couple of months!

I have cut the hours that i was visiting the hospital down, because it was wearing me out emotionally and physically, and I have to still got to go to work ! i am only in my 50's !

We were hoping that he would be moved to a care home, but have been told by the hospital, that wont happen , unless he can drink more.

How do people cope with working and trying to be support your loved ones ? and the feeling of guilt ?

I worked and supported my mum for 5 years and it was emotionally and at times physically draining. My colleagues used to say they just didn't know how I did it with a long commute as well. Sometimes we do what we have to do but we can only sustain this for so long until it begins to take its toll. I think many would say the same thing, your partner is in a safe place so use that to enable yourself to take some time out. Guilt is in many ways a normal emotion and god knows I have felt it frequently over the years. Guilt becomes a part of the journey and learning to adjust to it takes time, remembering if a day off is needed it won't change anything, tomorrow will be the same as the day before

 

[sdmhred]

It’s tough. I have reduced my hours and increasingly worked from home. Will your work allow you any adjustments? Mine have been understanding but i think patience is running low so I will have to prioritise work more again.

I would spend some time thinking about your self care and what you need to survive as best you can. For me this has been preserving my daily walks.

I also think of what mum and my dead Dad would have wanted from me. This has helped to deal with any guilt. What would your partner wish for you to do if he was able to say?

Stick around - I have found this forum incredibly helpful.