Is this near the end?

[Lifeover]

My dad has some form of dementia that seems to be related to degeneration of the brain round old injury sites. They’ve not really been able to give us much information.

He’s been in hospital for 2 months with pneumonia and loss of motor skills and been home a week.

Overnight he seems to have forgotten how to walk, literally telling him to put one foot in front of other. Using sticks. He’s gone off his food and drink and doesn’t say much. Today he’s had another fall when he tried to stand. It’s so painful to see. I feel bad but wish the pneumonia had taken him.

Does it sound like the end is near for him. He’s sleeping lots. We’re walking him to try and give home fluids. The dr says no sign of infection.

I live 50 miles away with a young child at school and work FT so can’t be up with him more than once or twice a week.

Sorry for rambling just feeling so helpless

Was he allocated a social worker when he was discharged from hospital? Is there a team in charge of his care? If he's suddenly lost the ability to mobilise (and there's no care package in place) I'd get onto his GP again pronto, it does sound a little like his discharge plan was rather lacking....

Sorry you're going through this, it's truly shit I know.

Sorry, I can't think of any way of putting a positive slant on it. Presumably he has a care package in place? Do you have PoA for health and welfare (too late now, if you haven't). Do you know anything about what his wishes would be in this situation?

Sorry not responded, my dad has spent another couple of weeks in hospital and is back to being mobile with a zimmer. He had another infection. Sat with home for hours before an operation on his gall bladder. He is so vulnerable, crying a lot, paranoid. The doctors had to make the decision to operate, they said he hadn’t got the capacity to do this. Unfortunately no health and welfare poa. We discussed getting this at same time as financial poa. But my mum kept going on about the fact they had DNAR orders in place. I kept saying they were different things but to no avail so dad just followed along. It worries me as he also has cancer (kept under control with drugs).

He’s just come back home we went to visit him, he’s v quiet, my mum doesn’t seem able to accept the change and thinks she can jolly him along to be his old self. Although he answered simple questions a couple of times I caught him just looking at me and I could see he was confused about who I am. Hearing me tonight from his bed saying he can’t get hold of my mum (she is sat downstairs). He then asked who I was.

Bizarrely my dog sat for a while just barking at him. Not in an aggressive way, more like she does when trying to tell you something.

It all seems to be happening so quickly.

Supposed to go on holiday next Sunday but don’t want to leave the country

Hi op, I wish I could respond more positively but this happened to my dgm who was like a mum to me last month.

In the last few days she pretty much refused to eat and drink and slept pretty much constantly, she was very agitated and restless which was managed by the hospital. She seemed to be up and down and the hospital had given us a time frame of 3 weeks to 3 months earlier that week.
I knew it wouldn't be 3 months.

My dad and his sister ( both of her children ) were due to go on holiday within the month and they made the decision to go because nobody really knew how long she had.

The sad thing was my dad was on holiday abroad, due to return just 36 hours later when she passed away. She had an infection too but wasn't responding to treatment.

It's the cruellest illness and i totally understand how you're feeling. Sadly there is no exact way of pinpointing the end but the signs you have mentioned could suggest it is near. Do you have any support from dementia nurses etc?

Hugs to you

I’m so sorry. It sounds very difficult. People can go on for quite a while like this, or suddenly deteriorate and slip away. You can’t tell.

Talk to your mum about your trip. Is there anyone else around who can support? With my dad it was similar. I had been the main support to mum for weeks and weeks (actually years) and my brother came to stay when I had a week booked away. I dithered about going but they insisted.

He did actually die when I was away but it felt ok- I’d been around for so long and mum wasn’t alone. We were all ready for the end as his life by then was sad and so limited for him. I felt a mixture of relief for him and thoughtful reflection. I knew I couldn’t come back any earlier because of the type of trip it was but mum had already agreed that would be ok should the situation arise.

I’m glad we had discussed it fully.

The funeral was after my return.

I wish you well through this difficult time.

To clarify- the hospital said 3 weeks to 3 months and it was 10 days.

I know it's a horrible question to ask but I would consider asking the doctor if they could give you their opinion on time frames. Sadly they have lots of experience with this but as described above, nobody really knows.

Thanks for your replies. No one seems to know how to deal with my dads dementia or understand it as it stems from his brain basically going sponges round his old fracture sites.

I know it sounds stupid but because he has all these physical illnesses too, they seem to be the only ones being addressed. It’s almost like all the health professionals have just thought well there’s nothing we can do so we won’t mention it again. No dementia nurse - how do you go about accessing these?

He’s got carers in twice a day at the mo, but this is for a few weeks, afterwards they have to pay but I’m not sure what with as they have the house (which they are currently living in) but no other money apart from state pension.

Luckily my brother is on hand next door (I live over an hour away) so they have practical support but I worry too much is in my brother.

At uni I worked in a care home and saw people with dementia there and my grandad had it, as did my dads brother. But it always seemed so much slower than this. In 3 months he’s gone from being forgetful and not good at working out problems to being a completely different person.8

He’s got carers in twice a day at the mo, but this is for a few weeks, afterwards they have to pay but I’m not sure what with as they have the house (which they are currently living in) but no other money apart from state pension. The Council will do a means assessment. If he is living on state pension and has no savings, then the Council will meet all the costs. The value of the house won't be taken into account while it is needed for him to live in.

This is where I'm currently at with my Nan (I'm next of kin as she has no other family). Had a fall on Wednesday and had been in bed since, refusing to get up, eat or drink. Nurse saw her yesterday, made her get up and walk a few paces but has been in bed since. Saw her last night, has no recollection of not getting up or why she was in bed in the first place. Carers keep ringing, saying she's sleepy, confused and won't get up. I feel bad for saying I can't do anything about it, they seem to expect me to have a magic wand. She is 93, was married for nearly 70 years and has had an amazing life. She currently has no life at all.

He should be entitled to 4 care visits a day for 6 weeks after hospital discharge as an ‘enablement’ package . Towards the end of that period they should assess him for Ongoing Continuous Care (I think) which can also be for up to 4 visits a day. You may have to push for this. Talk to the managers of the current care arrangement.

Sorry it is so hard. I am in a similar situation.

If care is sorted through social services, it tends to happen a lot quicker. They also have someone attached who can sort finances/benefits. Credit where it's due, the people we have dealt with have been fantastic (but you do have to lay it on the line initially /follow up/ring again etc!)