Help with elderly relatives - Parkinson's + Dementia issues?

[RC1807]

Hi aeropilot

Yes, there is an option to split them up and have 2x single rooms. It's been suggested by the care home manager. I should have added that above.

I genuinely think my FIL, whilst his eyes are closed and everyone thinks he's asleep, hears his wife's witterings and it causes a lot of his confusion, then anxiety from that. Having 2 x single rooms will push the cost up by £400/week, but if they can get to stay in this home, it would be best, I'm sure. It's a genuinely great home, and we know the carers are doing an excellent job, but since my FIL convinces himslef "he can do it", he stands and tries to walk without his frame. 9 falls in the 1 month he's been there.

Of course, this isn't to say my FIL can stay in the same home until the end of his days as he will need NURSING care given his Parkinson's at some point in time.

Fingers and toes crossed it can be resolved, at least for today (!), when my wife visits later.

[aeropilot]

RC1807 said:

Of course, this isn't to say my FIL can stay in the same home until the end of his days as he will need NURSING care given his Parkinson's at some point in time.

Aah.......so this care home is not a nursing home then?

As you say, it maybe that he lasts long enough that he does indeed have to be moved to a nursing home at some point. Probably best cross that bridge when/if that occurs.

My Mum needed nursing care from day one, so I was limited in my options for specialist dementia/nursing homes in my area - I had a day to make a choice between the only two that had a room vacancy
When she was in the local hospital for a month prior to this she had scored low in her assessment because of her lashing out and aggressive behaviour - which was so not my Mum at all, as she had been the most passive, un-confrontational person I'd ever known......but this conditional changes people completely unfortunately
She was a lot better once in the home, due to the people there being trained in understanding the condition - which is why hospitals are the worst place to be for people with this condition I'm afraid.

[RC1807]

Indeed.

This is a care home, not a nursing home. The local nursing home was the 1st we visited in July. It was shocking. Very sad place to be.

[aeropilot]

RC1807 said:

Indeed.
The local nursing home was the 1st we visited in July. It was shocking. Very sad place to be.

Yes, they are I'm afraid, it's heart wrenching to have to consider putting a parent in one, and it's an eye opening reality check for what could be our own future.

[RC1807]

I'd rather not

[TooMany2cvs]

RC1807 said:

I'd rather not

Gawd, absolutely.

Thelma and Louise for us.

[RC1807]

I hear you!

[RC1807]

Thank you MrV8

LPAs are already underway, and at great cost through the family solicitor.

My wife met the care home manager (CHM) earlier. She said it would be better for the inlaws to have single rooms, but, longer term - actually, pretty short term really - the CHM said my FIL should have nursing care as soon as possible, so that'll be something else for us to look at. FFS!
The CHM isn't going to pursue this with Hants SS that it's hurried along, but SS aren't that quick anyway.... Whilst I understand the CHM's position and thoughts, I'm kind of upset and let down that they only performed their assessment of them both about 5 weeks ago, and we're already in a, "They're too much for us to deal with.." situation.

Whilst my wife was talking to the CHM, my MIL phoned our house in Lux and spoke to our eldest daughter. She wanted to know where her car was so she could drive home (the same car that my wife's sold back to Skoda Winchester at midday today)! MIL's convinced she's in a hotel a long way from home. In reality she's about a 10-15 minute walk from her own house. Just as my MIL hung up on the phone, my wife arrived in their room at the care home, and so started the "usual Q&A" which my wife's had to do everyday for the past week.

FIL was lucid today and able to talk more clearly, and he was shocked and saddened to learn of what happened last night. He really didn't know. Increasing fatigue later in the day seems to cause a lot of his vascular dementia issues. MIL stepped in with a, "Well, I'd have known if that would have happened... IT DIDN'T!", which my wife could only respond, "Yes, Mum. Of course." Clearly my MIL had forgotten all about the incident.

As soon as both LPAs are in place, and my wife's in control of the decisions and finances, we'll then find a suitable place with 2 rooms in Bormuff/Poole area.

At the situation: GRRRRRR!

[TooMany2cvs]

RC1807 said:

Whilst I understand the CHM's position and thoughts, I'm kind of upset and let down that they only performed their assessment of them both about 5 weeks ago, and we're already in a, "They're too much for us to deal with.." situation.

It's entirely possible that his condition has worsened markedly in that time, of course.

[RC1807]

True enough, sir.

[aeropilot]

RC1807 said:

Increasing fatigue later in the day seems to cause a lot of his vascular dementia issues.

Yes, this is an issue I experienced.

During the week, while at work I was only able to visit Mum after work, and it was almost a waste of time as by tea-time (6pm onwards) she was quite bad. The home we quite good at working out who had to be taken to their rooms straight after eve meal, and who could be left in the lounge for an hour or so, and who could be left into the later eve. It was noticeable that evening visits from family were less than weekends or day visits because of this issue with that type of dementia.
Thus I would try to get to see my Mum in the morning at weekends if I could as she was at her most lucid at those times. In her last few months though, time of day made no difference sadly

I'd agree with 2CV's possibility that he could well have deteriorated in the time he's been in there already.

[RC1807]

TBH, I think BOTH Of them have detereiorated whilst they've been in the home.

BUT I strongly believe that if they'd been in their own home, it wouldn't be any different. Rather, I fear my FIL could have had a fatal fall in their own home since my MIL thinks he can still do everything, but Parkinson's says, "NO!".

[aeropilot]

RC1807 said:

TBH, I think BOTH Of them have detereiorated whilst they've been in the home.

BUT I strongly believe that if they'd been in their own home, it wouldn't be any different. Rather, I fear my FIL could have had a fatal fall in their own home since my MIL thinks he can still do everything, but Parkinson's says, "NO!".

Yes, you could have had the situation where the FiL could have fallen, and died there without the MiL realising, and thinking he was sleeping on the floor again......given by what you said before!

It's a shame that having gone through this once, you are now faced with having to find somewhere else that is a nursing and care home, and go through all the re-settling issue again......

[TooMany2cvs]

RC1807 said:

TBH, I think BOTH Of them have detereiorated whilst they've been in the home.

BUT I strongly believe that if they'd been in their own home, it wouldn't be any different.

With my old man - and with the FiL some years ago - I suspect that having the responsibilities of daily life removed from him has removed what little was helping prop him up. So what we're seeing is where he would have been, but for a real effort to try to hang on.

[NDA]

Going through this with 90 year old MiL at the moment...

She has pretty bad dementia, lives on her own, covered in bruises from various falls, has 3 private paid for visits every day.... doddery, frail, confused, frightened.

She refuses to go into a home.... gets very upset every time we broach the idea. However the time has come as it's unfair on everyone else - she calls us, the neighbours, ambulances etc etc and forgets everything she is told and everything she has done. It's going to be far better for her to be in care - less stressful and she'll have company.

However, it's a very difficult final chapter in her life.

Not much else to add other than to say to the posters on here - 'you're not alone'.

All horrid and very upsetting.

[Norfolkaston]

My Mum is 84 and has cognitive impairment (caused by a bleed on the brain), but which presents itself as dementia. She does not want to go into a care home. We have organised a care company to provide a carer (who rotates every 3 weeks) to live with her in her own home on a full time basis. It's proved reasonably successful, in that she gets to stay in her own home. The only downside is that we have to fund it privately.

[RC1807]

It's sad, but comforting at the same time, that PH is so diverse. These issues have been seen and dealt with by a number of PHers, so few need to have multiple forum accesses to very helpful and insightful comments. Thank you, PHers!

The CHM is OK that the folks stay where they are, for now, at least, so we're not under pressure to do anything in the immediate future. Mrs RC isn't planning on going back to the UK before the end of October, which is very useful for our girls who start back at highschool on 19/9, and I have a few L/H business trips between now and then.

The CHM acknowledged that my FIL isn't to be left in any of the lounges too long after dinner time, as being overtired affects him massively. He's been apologising to any and all of the carers when he sees them in case they were the 2 he may have struck the other evening, since he has no recollection of the event. Poor fella. The lead carer's put him on their roster to be moved to his room before 7pm. That way he's safer and can watch TV in bed and not be grumpy to be moved when he's over tired. That's the theory, anyway.

And now, we hope to have a more normal weekend as a family.

[Mexican cuties]

at least you are doing the best you both can, update on ours is we had a call from the home to say MIL had tripped and fallen, turns out that she had fractured her wrist, so many hours at the hospital (local thank god) so feel your pain with your long distance looking after them and their best interests at heart. eventually took her back, which she was pleased to do, no conversations about how long am I in hear, but we did notice that when she is in a different environment gets quite angry and aggressive, even telling the nurses "don't you know who I am, I built this hospital!"

Got a call 2 hours later from the home to say she keeps blacking out when standing, we noticed that when dressing her at the hospital to go home, she is tiny, turns out her last weight is 5 stone 8 !!, so now back in hospital, blacked out in front of 5 nurses 5 times yesterday so at least they can see how it is. seems ok in her self, but her weight scares us ref her heart. want her kept in over the weekend, as she seems in very good hands, but seems never ending. wishing you all the best with you looking and taking care of your relatives

Hopefully a quieter weekend for all

[AstonZagato]

My mother is declining rapidly. Vascular dementia. Numerous other health issues. She wants to live at home but sheltered accommodation would be more appropriate. She has carers twice a day, meals on wheels and a cleaner.
She can't remember anything she was told in the last decade. She has no idea how difficult or unsafe she is. She has locked herself out of the house many times including whilst being naked. She won't wear a pendant. She lets strangers in the house, she gets ripped off by door-to-door salesmen. She has no recollection of any of this.
My brother and I now have triggered the Powers of Attorney (worth setting up for any elderly relative - health and finance - and simple to do on line but has to be done whilst the relative is still competent).
However, he lives 2 hours away whilst I live 15min away. He thinks she is fine. Some of that is because he doesn't have to deal with it. Some is because he doesn't want to believe it. Some is because he sees her only once every 6 months. Some is possibly because he is aware that, whilst she is in her own home, he is more likely to inherit a share of the property.
It is very difficult and is not conducive to a relaxed family relationship. I feel for anyone else going through this.

[arfur]

AstonZagato said:

My mother is declining rapidly. Vascular dementia. Numerous other health issues. She wants to live at home but sheltered accommodation would be more appropriate. She has carers twice a day, meals on wheels and a cleaner.
She can't remember anything she was told in the last decade. She has no idea how difficult or unsafe she is. She has locked herself out of the house many times including whilst being naked. She won't wear a pendant. She lets strangers in the house, she gets ripped off by door-to-door salesmen. She has no recollection of any of this.
My brother and I now have triggered the Powers of Attorney (worth setting up for any elderly relative - health and finance - and simple to do on line but has to be done whilst the relative is still competent).
However, he lives 2 hours away whilst I live 15min away. He thinks she is fine. Some of that is because he doesn't have to deal with it. Some is because he doesn't want to believe it. Some is because he sees her only once every 6 months. Some is possibly because he is aware that, whilst she is in her own home, he is more likely to inherit a share of the property.
It is very difficult and is not conducive to a relaxed family relationship. I feel for anyone else going through this.

Went through all of this recently, mixed dementia. When you say triggered PoA you mean you have registered with the OPG ? If not then get that done asap as it takes up to 10 weeks. You cannot use your PoA until it is actually registered .......... as I found out when trying to extract monies from NatWest to pay for care home ! I had to pay, and will be refunded (she passed away last month) once probate is completed.