What stage are we at

[SRM1956]

I know everyone's dementia journey is different but I guess I just want to talk about our journey.

My mother has been in and out of hospital/respite since September. She had a heart attack in September and was diagnosed with severe heart failure. Ejection fraction of 10%. She is currently back in hospital with a UTI. Diagnosed after a fall. Hospital have stated she is medically fit for discharge. They said her behaviour is exceptionally challenging in hospital.
She was taken to hospital 2 weeks ago but discharged the same day as they didn't think she had a UTI. They said she was late stage.

She is calm at home so the plan is to discharge home with carers as before.

She's not eating though. All her ribs are poking through.

How long can we go on like this. She is very aware and talks and shouts and screams in hospital but is calm at home.

 

[Louise7]

Hello @SRM1956 sorry to hear about your mother, unfortunately an infection like a UTI coupled with a hospital stay can cause a real downturn in someone with dementia. I would be concerned that although your mother was calm at home prior to her current hospital admission the hospital has described her behaviour now as exceptionally challenging. She may have delirium, which could take a while to clear, if at all, plus she is not eating and you mentioned in an earlier thread that she has a terminal condition too. It's a lot to deal with at home, have you spoken to the hospital social workers about the situation?

Your mum may benefit from a new care needs assessment to see if an increase in care is now needed, and perhaps a 'discharge to assess' bed which would mean a stay in a care home for up to 6 weeks whilst her condition is assessed, paid for by the NHS. It does sound as though she needs specialist nursing care. You don't mention how long your mum has had dementia, and it is always difficult to know for certain what stage someone is at as things can fluctuate a lot, but it does sound as if she is in the later stages now. It may be a good idea to talk to the hospital discharge team and social workers, if you have not already done so, to make sure that your mum is thoroughly assessed prior to discharge to ensure that she gets the right level of care when she leaves hospital. You have to think about yourself too, it's a lot for you to have to deal with so you need to take care of yourself as well as your mum.

 

[SRM1956]

Mum had an assessment about 3 weeks ago and the social worker was adamant mum should be at home.

The district nurses are now visiting and putting a care plan in place.

She has already had an assessment in respite and she didn't eat there either. She also picked up the first UTI there. To be honest it was awful. I know not all places are like that but it was just a prison. There were some big men with challenging behaviour and she was terrified. The residents were sat in chairs in a circle all day with nothing to do and would get bored and then kick off. Social services said she could end up there again if she had another respite stay as there is no choice on where to go.

The social worker also thought a care home won't fix what's wrong and mum will just be miserable. Perhaps it's a jaded social worker who is all to familiar with care homes where we live.