What to expect now

[Iwanttobeinthehills]

Elderly dad who is mid 90s is just home after 4 weeks in hospital with a UTI and back injury. While in hospital the dementia symptoms got much worse. Drs said it was delirium due to the infection ( and I expect the not great experience of being in hospital).

Dad has now been home for a week and he’s settled in well with carers but memory and skills not showing any sign of returning. Reliant on carers and family for everything now including dressing etc when before he could manage some self care himself to a degree.

He’s mainly quite calm and being lovely and polite to the carers but has periods of confusion on the top of the memory issues.

He often asks the same question over and over and can’t retain the answer for even 2 minutes. But he can remember he was recently in hospital (though not why) and say he’s happy to be home.

I’m wondering what to expect? Anyone have experience of dementia symptoms improving as the delirium lifts or is this the new baseline now?

There isn't really any way of predicting it OP.

My mother had dementia and was already in a care home when she spent 10 days in hospital after breaking her hip. She was more confused in hospital, because it's a confusing and alien environment (and she'd broken her hip and had surgery), but within a couple of weeks of being back in the care home she was back to 'her normal'.

But she was 'only' 83, and was only in hospital for ten days. Given your father's age and the length of his hospital stay, this may be his new baseline. It sounds as if despite his confusion he is fairly content, and IME that is a big positive for someone with dementia.

Dementia does often get worse after a stay in hospital. At his age it is unlikely to improve. The less he has to do for himself the less he is likely to be able to do.

i guess that what you are asking is, ‘What will his dementia look like going forward?’ I have a lot of experience and I can tell you that every case is different and reveals itself in different ways. My mum was quite happy in her ignorant and unaware state. Others can demonstrate anxiety and paranoia. The important thing is to keep on top of his behaviour changes. Don’t be fobbed off with ‘ it is just the disease’ Raising temperature or other symptoms can be indicative of something else going on. UTIs are very common as people find it hard to get enough fluid.

I am sorry that you are going through this❤️

Sorry this has happened, we are going through a bit of the same, and will watch the thread. My Mum (living at home with Dad, both 85, Mum quite bad alzheimers, Dad fine, and we sort of "managed") fell in bedroom, broke hip, replaced next day, and then still in hospital (nearly 3 weeks now, has a bed sore). She has recovered to a degree (medically) but not mobile and it seems to me, doubly incontinent. Her dementia IS worse, but it was quite bad before she went in (constant repeat, distress, etc.) They are saying she has to be discharged. We have been scurrying to find extra care or sheltered accom, but no joy so far. Social worker in hospital agrees that it is risky (upper flat, 14 steep stairs that they will evac chair lift her to, then she will be room-bound with a commode) but alternative is care home, and they have at least said they will find one that will take her (at £1000 per week). She needs to be with my Dad, hence care homes not being the ideal answer. To answer your question with the limited experience I have, it may be the new baseline now. I once talked to a a memory clinic nurse and she told me that people can bumble along in a certain way for a while, then an incident occurs that sets them back, and they do not regain what they once had. With my Mum, after the constant repeat (sometimes 100 times in an hour) and the distress (sometimes just a bad night's sleep would set the tone for the day) we also had some really irrational behaviour before she fell (like trying to get out of the house, one one occasion she succeeded and was found by the police in her nighty a mile away, which is a reasonable feat considering she was frail before and could not walk more than about 20m). It is a horrible disease. My only advice is start thinking now about the decline and act sooner rather than later. No-one wants their parent in a care home, but when it suddenly becomes really necessary, it is hard to navigate the system. It's upsetting. Sending love xx

Thanks @catofglory its very true that the contentment is something to be grateful for. He was very anxious, confused and sometimes angry with us in the hospital which was sad to see as not his usual self. I’m sorry you had experience of this yourself.

You’re right about the UTI
@imperfectpasie - that’s what got him on there in the first place and he came out with a permanent catheter so we’re on high alert for another infection. Thank you for the sympathy and your thoughts on the new baseline.

@avignon1234 our experiences seem to be very similar down to the incontinence issues. Not great they let her get a bed sore in hospital. I hope you can find a placement for her. Sounds complicated with your Dad naturally wanting to be with her too.

We are very much taking things one week at a time. Hoping things might improve a bit as the delirium subsides but steeling ourselves for more rapid decline. He’s never wanted to go into a nursing or care home. And the family member who is the main carer wants him to stay at home too. I hope that’s possible but I’ve also started looking at potential nursing homes as I want to have some options if we need them.