New here - looking for advice and suggestions

[Solihull]

Hi Sinkhole, my mum was ready to be discharged and I was asked what I thought about her going home. While in hospital the GP does not get involved and I said that as I lived 10 miles away I would not be there for her and I did not consider carers visiting would be either welcomed by mum and being left alone all night (when she did not seem to know the difference between day and night) would not be an option any longer. At this point an occupational therapist became involved and she was someone who understood the problem and suggested an assessment by SS. The OT was great, very understanding and assured me that all things considered, this was the right move even though I felt so guilty for a long time after. The assessment was done and as we were self funding and SS agreed that she would be "at risk" I was then left to sort out a suitable care home (I am an only child too). Five months on, mum is in care, clean, fed, safe and I can finally relax. It was not easy but I think it will be yourself that makes the decision and many people on here would agree that sometimes you have to go above the head of your loved one, coax and even tell a few white lies. When their memory is bad, it will only be you that remembers these finer details but it will all be for their good. My mum has never been officially diagnosed with dementia but was described by the SS lady as being "pleasantly confused" but mum could not tell you what she has eaten or done 10 minutes later and has no idea of time, season etc. She would not have survived on her own for much longer. Unfortunately it seems to take a crisis, ie hospital stay to force the change. I was in your position before this and was always waiting for something to happen, the falls, dehydration & malnutrition finally took their toll. When SS asked mum about going into care she did agree although forgot that again later so I suppose I was lucky! Sorry to have rambled on but there is no rule book and if others can relate their journey hopefully it will help.
Best wishes,
Sue

 

[sinkhole]

Sue, that's very helpful. Thanks.

 

[canary]

My experience is actually very similar to Solihulls. My mum also refused all support (she was convinced that they would steal from her) and I dont live close enough to her to support her myself (I also have a disabled husband). SS phoned mum up and asked her about support. She told them that she still went shopping, did all her own cooking, cleaning and washing when in reality she did none of this, but they believed her and crossed her off their books She was also wandering the streets at night dressed only in her nighty and getting lost, but I didnt know about that then.

I too knew it would take a crises before something happened.

Eventually she had a TIA and ended up in hospital. While she was there is became obvious that she had not eaten or drunk anything for a while and her behavior caused concern. She was seen by the safeguarding team, was found to have lost capacity and went from hospital into a locked dementia unit where she still is. We told her that she was "convalescing after her stay in hospital" and never said that she would be there permanently.

This was six months ago and she is now settled, clean, fed and cared for by people who understand her condition.

 

[Solihull]

Canary, we must have been going through this about the same time. Very similar and when mum was in hospital SS said they could not believe she had no previous care package?! How do you force someone and why do SS believe every word of a 91 year old when questions are asked? Mum had a district nurse call every week to dress her leg and she spoke to me saying she thought mum needed some kind of care package. I agreed and said yes - glad someone else has noticed and she said she would get SS/GP involved. Four weeks later, no action - mum ended up in hospital.
Take care
Sue

 

[canary]

I really dont know why SS believed her without checking, Solihull
I can only think that its a misguided belief in not "forcing things" on someone with presumed capacity (because they havnt been tested and shown to lack capacity)

A cynical bit of me can also see that it would save SS money


I dont know of any way to get someone to accept carerworkers if they are dead set against them. Some people have managed to get "cleaners" accepted, but mum wouldnt even have that.

 

[Witzend]

Hi Sleepless, I do appreciate it could get much more difficult for mum, but I also see it as the only potential way to get my aunt in a safer environment and to introduce the concept of outside care to both of them.

My mum won't agree to any outside help (apart from me) now but she does admit she would need someone to do some of the housework if sis moved in. My view is that we can then gradually get both of them comfortable with visiting helpers and then transition them to carers over time.

We all want to avoid care homes as long as possible. My mum has a big house with plenty of spare room. We have enough spare money to spend some on the house now to make it more suitable for them both and pay for visiting care. If their physical health stays the same as it is now, I do believe this is the only option they will accept and at least it would be a big step forward from where we are now.

I must say I would hesitate to place someone with dementia with another elderly person. It could work, but it could also prove to be a colossal, exhausting strain on the carer. It is usually not possible to understand how stressful it can be to care for someone with dementia until you have done it, day in, day out, maybe (or often) with badly disturbed nights thrown in. Visiting care is all very well, but there are usually an awful lot of other hours to think of.

 

[sinkhole]

...was found to have lost capacity and went from hospital into a locked dementia unit where she still is.

How do they assess lost capacity when someone is in hospital?

 

[canary]

How do they assess lost capacity when someone is in hospital?

Social Services was involved and her SW did the testing when she was fit for discharge, but her dementia was very apparent and the hospital was concerned about her going home. I wasnt there when it was done, so I dont know any more.

 

[Witzend]

One thing to bear in mind is that even if the house has plenty of room, so that each can have their own space, the person with dementia may not be able to understand or remember that they should give the other person a bit of space. It is not at all uncommon for the carer to have someone literally at their elbow for most of the day, or e.g. be continually asking the same question. And in such cases is no use asking them to stop, because they simply cannot understand or remember to do, or not do, this or that, or that they have already asked the same question 15 times in the previous hour.

I am not saying this will definitely happen, but just pointing out that having a large house will not necessarily guarantee any peace or quiet time for your mother. Dementia can get worse quite quickly, too. I would honestly think it is a huge ask for anyone of your mother's age to take on the care of someone with dementia. Many of us on here who are much younger have found it desperately exhausting.

I am sorry if this all sounds very negative, but I have two dementia T shirts (my FIL and my mother) and before I first took on 24/7 care I was blithely, utterly clueless about what it could entail.

 

[sharonbrown]

I think you need to let go of the idea of your mum and aunt living together. Living with someone with dementia, which will only get worse, is hard at any age but with them both being elderly your mum will find it a huge drain and probably much harder than she realises. I think you'd find yourself in a worse situation all round except for the fact that the problem would be under one roof not two.

As their 'children' we obviously know best but sometimes it's impossible to convince them of that. So maybe try to make the best of a bad situation, step back from trying to get her to do something she doesn't want to and wait for the crisis. When it happens your aunt may finally accept things have to change.

Good luck!

 

[sinkhole]

Witzend, I'm not taking what you say as being negative. You and others who have replied here have much more experience with these situations than I do. I wouldn't be here asking for advice if I didn't want to hear what the reality will be like.

I do see how it would put a big strain on my mum, but I am still approaching the idea of my aunt moving there as a way of getting them both some help and care in an environment familiar to them. It would also mean I would be dealing with one GP, one LA and one SS dept for both of them, which will help me.

It might be my mum caves in after one week of '24hr auntie' and then agrees for me to organise visiting care. In my mind, that would be a good result and we could then build on that and maybe work towards live-in care later, as the house is big enough.

We've talked over other options at length and this is really the only one currently I see them both agreeing to. Otherwise, the only way I can see either of them getting the care they need in the future is when they have an accident of some sort and are hospitalised. I can't currently think of a third option, but that's why I'm here.

 

[canary]

I can see your dilemma, sinkhole. Sometimes with dementia you have to go with what works now, realising that it may not work tomorrow. I think you know that its not going to work long term.

Would it help if your aunt stayed with your mum for a week or week-end to see what happens?

 

[sinkhole]

Would it help if your aunt stayed with your mum for a week or week-end to see what happens?

She has done on several occasions, the last being at Christmas when she was there for at least a week.

There's no doubt my aunt enjoys being in a nice warm house, having a hot bath and fed with as many hot dinners, mince pies and cups of coffee she can eat and drink. It means my mum has to do more work, but that has led to her agreeing with me that if aunt moved in permanently she would have to have some help coming in.

Like I say, that would be my way of introducing them to some proper care as they won't agree to it otherwise and aunt just won't let anyone enter her house.

I should add that the idea of aunt moving in with mum didn't come from me originally. I wanted to explore some sort of sheltered accommodation for them both, but as time went on I could see they were never going to agree to it. IT was mum's idea and although I could see the pitfalls myself, it has become the one course of action we can all agree on, so you can probably understand why I'm keen to explore it fully.

 

[canary]

Hmmm, its so difficult when they wont accept any solutions. My mum refused point blank to have any help (even a cleaner) and eventually the crises came when she was admitted into hospital and was found to be very underweight and dehydrated. From the hospital she went straight to a CH. I can see that you would want to avoid that scenario.

I think that you will just have to try it and see how it works.

Id recommend that you start looking at care homes though - just in case.

 

[sinkhole]

Id recommend that you start looking at care homes though - just in case.

Yes that does sound like a good idea. On that point and considering we will be self-funding and aunt has no particular affinity with the area she lives now, I presume I can look at care homes anywhere in the country if I want to?

It would seem best to choose somewhere easier for me and mum to get to than where she is now, but if she was admitted to hospital for something and they decided to transfer her to a CH, would they move her to one first and then I'd have to move her again later or would they expect me to nominate one before they moved her?

 

[canary]

Yes, in theory you can go anywhere in the country, but do bear in mind that some (most?) CHs like to see the person first before offering a place and if you are the other end of the country it might be difficult.
If she ends up in hospital and they know you are self funding then I think they usually leave it to you to organise it before discharge. We didnt know how much money mum had, so she was sent somewhere by the hospital, but she settled in there so well that it was decided that it was the best place for her permanently.

Also, check up on whether they are able to care for your aunt into the final stages. Some more general care/nursing homes dont have the experience to deal with the more challenging aspects of dementia and you really only want to move her once. I think that if I had to move my mum again now she would find it quite traumatic.

 

[Witzend]

Yes that does sound like a good idea. On that point and considering we will be self-funding and aunt has no particular affinity with the area she lives now, I presume I can look at care homes anywhere in the country if I want to?

It would seem best to choose somewhere easier for me and mum to get to than where she is now, but if she was admitted to hospital for something and they decided to transfer her to a CH, would they move her to one first and then I'd have to move her again later or would they expect me to nominate one before they moved her?

The CH we finally chose for my mother was 60 miles from her home, but very close to mine. It was about an hour and a half's drive away in normal traffic. The CH did not seem to think it was a problem. We could not have taken her for assessment - it was out of the question, not least because she was always extremely reluctant to leave the house at all. They had to come to her.

If a CH is likely to be on the cards then certainly checking out any in your preferred area well in advance is advisable. At least you will know which would be top of the list, though if (as so often) we wait for a crisis then chances are our top choice may not have a room available.