Time for a reality check?

[Lyn P]

Dad has been in a specialist dementia home for nearly a year now. He has Parkinsons and Lewy Body dementia. His condition is very variable, but basically he can't walk any more, and barely even stand. He has been fairly settled although being a very demanding type has complained a lot about the home. His main problems are 1) not enough social stimulation 2) people keep wandering into his room and messing with his stuff. Recently his rivastigmine was increased, which has made his mind clearer, and so these irritations are really becoming major problems. He rings me 2-3 times a day to complain (the carers help him dial because he's not that co-ordinated).
Recently I'd had enough. I have been on at the home for months about sending in a social carer every day and preventing the wanderers, but they dont seem to be able to get that together and tell me that the wanderers have rights and cannot be restrained. Because Dad is unable to unlock his own door they are not allowed to lock it for him, even though that's what he wants. We are now paying for outside carers to come in and sit with him, which works OK (although expensive!!) but as soon as they leave he rings me again. By the way I do visit, almost every other day, and take him out as much as I can. So anyway, recently I thought, OK, what he needs is a nursing home that is not all dementia residents, and we went to look at one. He was delighted and told everyone where he is now that he was leaving. However the new home does not seem to be as good as we thought and I have been told he would be moved to the dementia unit (upstairs) anyway. He didn't see that part of the home. So that's really out of the frying pan into the fire.

I have 3 kids, a husband, a job and no help. So when I went to visit yesterday and he started on again about wanting to kill himself I just felt like I was going to have a panic attack. I had to leave the room. He'd heard about a home about 30 miles away and said he wanted to go there, and didn't care if that meant that he wouldn't get many visitors.

My question to you lovely people is - do I go with my gut instinct, which is that he should stay where he is now, and why can't we get a keypad fitted to his door to keep out unwanted visitors (does anyone else have experience of this problem) - or do I do as he asks and put him somewhere else and risk it? My husband thinks the complaints would start up after a few days and then if he's far away it would be harder to deal with.

One thing I do know, I can't go on like this.

 

[littlegem]

Oh dear you are in a pickle.!!!!

I would go with my gut instinct always and I think your hubby is probably right about your Dad complaining in another home.
Some homes are, I have heard, putting locks on doors, as part of the 'human rights' (that old chesnut again), not sure if I would want the door locked on my Dad though.

Would a 'Please knock before entering' or even a 'private' sign on his door stop the wanderers do you think. It is unfortunate that we put our loved ones in CH's to keep them safe and they do lose out on privacy.

Sorry I cannot offer more help and hope you get it sorted soon as it must be uncomfortable for your Dad to have people in and out of his room.

 

[Grannie G]

Hello Lyn

There is a big risk to your father in case of fire if his door is locked, especially if he is unable to unlock it himself.

The carers should not encourage him to phone you so often, not at all really as you visit so frequently. They are there to look after him and it is their job.

I do understand they cannot prevent people wandering into rooms and if your father is immobile he would find it very intrusive.

I`m afraid your father is demanding perfection and sadly in this world it is rarely available.

I wouldn`t dream of moving him to a home 30 miles away.

You say yourself he is demanding. Perhaps he would be demanding wherever he was.

 

[nicoise]

Dear LynP,

Is your dad on any type of anti-depressant? My mum was on an SSNRI (for neuropathic pain relief primarily), and the bonus side effect for us all was the mood levelling the medication brought about. It really calmed down the strong swings of elation/despair that made her world very difficult for both her and those around her. At times she would also know very well of her problems, which upset her enormously; but lacked the other type of insight where she couldn't judge why she couldn't just carry on as she was, why she needed help.

And of course some days she could do many everyday things well, and the next would be unable to work out how to get to the bathroom. And some days walk, and the next not.

I think your husband is right - it is not the place/care home that is the problem, it is the way your dad's mind sees it because of his dementia that is the problem. You could do all the upheaval of a change and find that the base problems still exist.

I found the fluctuations difficult to handle. It was as though a log-jam built up in Mum's brain gradually, then suddenly it would clear and all would be good again. Then the gradual blocking started again, and so on. But the anti-depressant really helped to even her mood, and she was much happier. Unfortunately I think it was just another brain chemical that had gone wrong, and needed replacing. For my mum this worked - it might not for your dad, but just a thought you could consider.

Best wishes xxx

 

[choccy]

I recall reading, when my Dad was in hospital, an article in one of the nurses magazines about the use of colour for boundary's. It was suggesting that a big red STOP sign on a door can work.
Don't know if it would work, maybe worth a try?

 

[wispa]

Hi

It really is a difficult one isn't it.

With regard to door locking....when we visited homes for my mum last year there were some that kept doors locked all the time and residents always had to ask to be let into their room and some that kept doors unlocked all the time, and also one that said it was at the relatives request as to whether the door was left locked or unlocked.

The home we finally settled on had a different policy....they actually allow my mum to have a key (which she keeps tied to her trousers, but sometimes still manages to lose!), but the locks are of a type that you only need a key to gain access to the room, she can freely exit out of the room without the need for a key...as obviously would be required in an emergency (not that that helps with your Dad not being able to use a key, but maybe there is an alternative that he would be able to use ?).

As far as your gut instinct goes for changing to another home, I certainly have had reservations about my Mum's current home for one reason or another, but unfortunately there does not seem to be one home that ticks all the boxes....I only wish I could put all the best bits together into one home!!

I certainly think that your father would find something to complain about in every home! How valid the complaints are, is anybody's guess.

In my Mums case, when she was at home she swore that people were coming into her home and stealing and moving things (that was mainly an accusation levied at me!), simply because she could not remember moving, giving away or throwing things away (things of value were thrown away or given away too, including things given to one particular carer who obviously never should have taken them!)

If your gut instinct is for him to stay where he is and the things he is complaining about are not too serious then your instinct is probably right, but I have to say I am in almost the same quandry as yourself for different reasons....it just isn't easy is it....I wish I had all the answers and my decisions were always the right ones

Take care. X

 

[Lyn P]

Thanks everyone for your comments. In the end I had a sort of mini break-down in the home (embarrassing) because he was so grumpy and when he gets like that he talks over people and starts shouting and I just lose the will to live! It really is a lose-lose situation when someone has dementia AND has lost the use of their legs, there's nothing but bad news.

Anyway. The home manager saw me and we had a chat and she is going to look into fitting a keypad to his door. It's made me feel a bit better, but the 2 previous managers also looked into it and both came back saying, 'no'. I can't believe that I can't sign a piece of paper to say, yes I know he is being locked in, yes its what he wants. The psychiatrist who assessed him recently said he was capable of making his own decisions.

Sometimes its so tempting to just run for the hills, isn't it? (But I know when I got there I would turn around and have to come back.)

One thing I have learnt from this whole situation is, as someone said above, there is no perfect answer.