Mum with dementia being discharged from hospital - what now?

For issues specific to caring for someone with dementia.
This is my first post to the forum, so please excuse me if I waffle! My mum is 80 and had a fall at her flat on the 8th of December and broke her wrist. She has been in hospital ever since due to additional problems. She has dementia, but it seems to have got so much worse since being in there. She has had diarrhoea and a UTI, though both have cleared up now. She is having trouble walking and has been diagnosed with ‘foot drop.’ The only way I can describe it is like watching a puppet walk. Before her fall she was just using a stick, now she uses a frame and needs a nurse to accompany her to the toilet. They say she is very unsettled at night, keeps trying to climb out of bed (the sides are up), shouting and disturbing the other patients.
My husband and myself attended a meeting about her on Friday and it was agreed by all that she isn’t safe to be left alone. They were making noises about residential care, which I refused as I know she would hate it. She’s already said if she goes into a home she’d kill herself. So they then suggested 24 hour care for a couple of weeks to see how she gets on, but am I deluding myself to think that she’ll improve once she’s back in familiar surroundings? Has anyone used carers for this sort of thing? If she improves sufficiently to not need 24 hour care we will think about carers coming in a few times a day for personal care and meals as there is no doubt she will drop drinks and plates of food. Also I am assuming we won’t get any financial help as she has savings?
For some reason I am feeling really guilty about all this and just want to do the best I can for mum, but I know whatever I do in her best interests she won’t like it. She’s a very negative person anyway and moans a lot. I lost my dad in 2015, he also had dementia but was so easy to look after and never complained. I really miss him.
If anyone has any advice or comments I would be extremely grateful. Thank you 😊
Hello Nicola,

Please don't dismiss out of hand the idea of residential nursing care. I fully understand your gut reaction that "Mum would hate it" and *I want to do the best for Mum , we all feel that way. But if she now needs 24/7 care then no one person can provide and it's time to think about what Mum "needs" rather than what Mum "wants" - there is a world of difference between the two !

Does Mum live with you or does she still have her own place ? Less than £23500 in savings then the LA will make a contribution to her care, more than that and she would expected to be self funding until her funds go below that level. If the hospital are saying she needs 24/7 care that it's likely Mum will be eligible for Continuing Healthcare (which is paid for by the NHS, not the LA) and they should be assessing Mum for this.
So they then suggested 24 hour care for a couple of weeks to see how she gets on, but am I deluding myself to think that she’ll improve once she’s back in familiar surroundings?
yes, I'm afraid you are. It's unlikely that Mum will improve once back home; given the length of time she's been in hospital it's more than likely that she will be even more confused and unsettled once back home. In a residential nursing home she would have people around her who have the experience and knowledge to care for her for the full 24 hours.

So many times we learn of families not wanting their loved relatives to be admitted to a care home, but in the end find it is so much more difficult (physically and emotionally) than they imagined caring for them at home
Nicola, focus on what mum NEEDS not what she wants. Either she manages at her flat with lots of carer support, (not you!) or moves into residential care because it means she needs round the clock care. It sounds like she is already using emotional blackmail, you MUST ignore this.
You must stand back from this, I know how hard it is when you love someone, but this represents a "life changing moment" for mum, or "sink or swim" time.
Does mum have over £23,000 in savings? Own her property?
If you are not sure about this, read some of the other threads here about people whose lives had been ruined by ungrateful mothers!!!
Hello Nicola
It is a sad fact that dementia just deteriorates, often in great downward chunks rather than a gentle slope. It certainly doesn't improve. The shock of the fall, the anaesthetic, the stay in hospital, the infections will each have had a detrimental effect, none of which could have been avoided and none of which are anything to feel guilty about. Shit happens, unfortunately.

The authorities don't recommend residential care lightly so I would suggest you go have a look at a few Homes, especially those that offer dementia care. Even if Mum does make it back to her home for a while, it is likely she will need residential care at some point, and how many calls/falls/false alarms/worry will you and she go through in the meanwhile.?

Yes, residential care isn't easy and isn't perfect but dementia is such a cruel disease that it becomes necessary . It gets to the stage there is no other option, it takes a team 24/7/365 and its best if that happens in one place.

Please don't feel guilty. Our advice is to change the word 'guilty' to 'sad'. It is sad Mum has dementia, it is sad she has deteriorated, it is sad she needs care, but you, and she, are guilty of nothing.

Kr
MrsA
I agree with the others above. Also, if you think about it, if your mum is a very negative person anyway, always moaning and grumbling (and was like that before the dementia set in) then she will not be happy ANYWHERE!

So, she might as well be in a residential care home where, again, as others are saying, she will be far better looked after 24x7, and if she doesn't like it, well, she doesn't like anything, so what's the difference???!!!!

And yes, dementia will increase and she will deterioriate. In three years my MIL has gone from someone who used to sit besie me on the sofa (exactly where I'm sitting now), happily eating her tea, and laughing cheerfully at old Morecombe and Wise reruns :) ....to someone now, in her residential home, who just sits, slumped in a wheelchair, unable to walk any more (she's forgotten how), unable to talk hardly (she tries, but nothing comes out), and doubly incontinent. She barely recognises me, there's a small gimmer in her eyes when I arrive, and then it fades....

It's ghastly to see, but she can ONLY be cared for now in a proper care home. If nothing else 'takes' your mum (eg, stroke, heart attack, pneumonia etc) then the dementia will get her in the end. It will simply close down the last parts of her brain, those that keep the heart beating and the lungs breathing. It is a cruel, cruel disease, and crippling to try and look after....
Firstly, thank you so much for your replies, I appreciate you all taking the time to help. My search for carers to come to mum at her flat drew a blank - because she needs day and night care at the moment it is difficult on two levels; most of the care agencies I spoke to didn’t have the staff available to accommodate this and the ones that did were charging ridiculous money.
So - my brother contacted me. He lives about an hour away from us. He has been talking with his wife and they want to take mum to stay with them for a few weeks to see if they can help her improve and look after her and give her good food and company. My sister in law had her dad to live with him for the last couple of years of his life and she is extremely capable at dealing with the elderly. Her dad was on oxygen, had dementia and all sorts of health problems. I really don’t know how this will pan out, but we want to give mum a chance away from the hospital ward where she’s been for the past 8 weeks. I have a meeting with social services and occupational health on Monday about it.
I told mum the other day about her going to stay with the family for a while and was really enthusiastic and tried to ‘big it up.’ There wasn’t much of a reaction from her, but I think she’ll enjoy it because my brother has 4 children (young adults really) who will do their best to amuse her!
Mum’s bed in the hospital has been pushed against the wall as every night she is trying to climb out - even over the cot sides. The lady in the bed next to her said she was awake all of last night, shouting and disturbing the rest of the patients. Apparently it’s a nightly occurrence. How can she possibly stay awake for so long? Also last night she took off her pyjama bottoms and ‘pull up’ that she wears to bed. I have mentioned all this to my brother in case it puts him off, but they still want to give it a go.
She also has a fixation with the toilet - keeps asking to go very often, plus an obsession with tissues and wiping her nose. And she ‘whimpers’ when she wakes up, until she realises everything is ok and then she calms down.
When she is away at my brother’s I’m going to visit a few care homes, just to get a feel of them and what they offer. I am mentally exhausted, she’s my first thought in the morning and my last at night. And she has no idea, which is probably a good thing!
Thank you for listening.
I'm glad your mother is going to be coming out of hospital (and I expect, from the way you describe her behaviour there, that the hospital and other patients will be glad she is going too!!!).

A couple of weeks with her son might do her good, and it will certainly do you good, and that is the main thing. To be sceptical, unless either her behaviour calms down A LOT, or your SIL has the patience of a saint and the skill of a nurse (and a psychiatric one at that!), etc, a couple of weeks is all they will be able to stand. However, maybe they can keep her there longer- maybe!

However, I think it very, very sensible for you to start checking out care homes. I suspect that is where your mum will be going after she leaves your brother. It could well be the best, safest place for her now. sad, but there it is.
Nicola,

What type of dementia does your mum have? If it is vascular dementia, the illness seems to remain stable for a while and then get worse n stages. Sadly, whatever type of dementia it is, in my mum's case, as it got worse, she was first unable to walk and then unable to toilet herself. It was at that stage that I could not cope any more.

I would take this opportunity to look at nursing homes while your mum is away especially as the best ones are likely to have waiting lists. If your mum has sufficient savings to not get any help, the choice will be yours. If the council is paying, there is generally a limit to that support.

My mum always said that she would hate to be in a home and I had (have?) tremendous guilt over that. However, by the time she went into the home, she had no idea what home was hers if that makes any sense. In fact, the regimented regime of meals, tea, at a certain time suited her and made her feel safer than she would have done at home waiting for a carer to turn up or not as the case may be.

Not an easy time for you, but do try to get some rest while you can, If you have any questions, or just want to vent, many of us have the t-shirt and have got through ... Anne x
I would agree with Anne that one of the very 'blessings' of dementia is that as it gets worse, they really, really won't take in where they are, or take much notice of anything at all - and what little notice they take fades until they are completely 'inert' ....and then the dying brain turns off the heart and lungs.....

It at least gives us the 'comfort' that by the time they do die, we can only be relieved the ordeal is all over...
Since I last posted my mum has been living with my brother and family and things have been very difficult. She continued to be very unsettled, wailing day and night, shouting ‘help me!’ even though nothing was amiss. Her obsession with tissues which started in hospital got worse. She would try and get out of bed during the night and had a couple of falls and grazed her face and arms through dragging herself along. She had a bad cold a few days ago and wouldn’t eat. Things changed when my sister in law tried to give her a drink and she couldn’t swallow and became dehydrated. She was taken into hospital the other day and my brother rang me earlier to say that the hospital think it will be surprising if she’s still with us on Monday. She is being given painkillers and sedation but that’s it. My mum is dying and I am just waiting for a call. I know it’s the best thing as she has no quality of life, but she’s my mum and I don’t want to lose her. It’s been an awful time lately, my mother in law passed away less than a week ago - she also had dementia but she had a stroke and lost the ability to speak or swallow. I feel life is very cruel at the moment. Not meaning to sound self-pitying as everyone on here is going through similar things, but it seems relentless.