Any Advice please?

[SallyB]

Hi, I have'nt had time to be here for quite a while but would really appreciate some advice if anyone has any ideas. Dad has really deteriorated recently. He is living on his own. Thankfully he has never wandered, he won't go out of the house unless it is with me. He has Social services carers in twice a day to help him get up in the morning and go to bed in the evening. He has an age concern home help to cook his lunch, prepare his tea and do some cleaning. I take care of everything else. I do have a brother and sister who provide minimal help. My problems are; As Dad is deteriorating should i be considering a care home? How do i know when he shouldn't be on his own anymore? (He carn't live with me due to family disagreement over his money!) Social services keep changing his carers so his personnal care is not as good as it was. Dad has a problem with ritualistic behaviour he gets really anxious if things aren't done the way he has always done them. I have complained about the lack of continuity but just get fobbed off.

Sorry i am ramblling now but i just don't know what to do for the best, yesterday i told my sister (after being at Dad's most of the day with my other half laying a new bathroom carpet because i couldn't clean it) that i feel like i carn't cope anymore and all she said was"perhaps we should rethink things if you carn't cope" and then follws it up with "do you like my necklace? I have been making them all afternoon" Oh and whilst she was talking she was watching me put Dad's shopping away!!!
I presumme she means i should think about putting Dad in to a care home. At the moment i don't think I coud even find the effort to even start to look into care.

Well better go now I hope this makes sense to some one, any thoughts would be greatly reiceved, just one last bit of info, my other half's Gran is about to be discharged from hospital having had surgery , my dinning room is now a bedroom with several aids awaiting her return!!

Sally

 

[Michael E]

Sally hi,

sounds pretty demanding and difficult... really do not want to offer advice - I have been wondering what or when would be the time and of course there is no answer.

I wonder if the home our dad, mum or in my case wife goes into is pretty good and the social life is a bit more than just a TV blaring out all day then maybe it is better than the problems of different health care workers.

Lots of men thrive in a communal situation - The Navy - both of them - Army - joining the Masons.... Not for everyone but it seems to me it does work for lots. Look at all those Chelsea pensioners - they seem happy enough. It may be that the companionship - things going on around - people to talk to... a sort of social life may be as good as that he has now or possibly even better...

We are all wracked with guilt - trying to do the best and most honorable thing and sometimes I wonder if we fail to see what is actually best for our close relative who is so sick that maybe a home is better. My situation is a long way off that because I am here 24/7 and it is just a matter of being patient. But a guy on his own with a load of strange women coming in and out might prefer a more stable environment - or maybe he would miss all the women dancing attendance - ...

dunno

love

Michael

 

[mumof3]

Hi Sally

It sounds as if your Dad's circumstances are quite similar to my MIL's. She too lives alone and has carers coming in twice a day, in her case to administer medication which she gets very anxious about. Additionally, after a social services assessment she a carer for 2 hours, three days a week. She also has us, her sister and some good friends who all help out in various ways. My husband and myself are not in a position to provide any more structured care than we do at the moment so how we are going to cope as things progress is a big concern for us.

I had a really helpful talk with the newly assigned CPN recently and said how worried we were about this. She advised that there were lots more kinds of support that could be provided to keep my 62 year old MIL in her own home eg. someone going in up to 5 times a day to prepare meals etc. She said that we only need think about other options if my MIL needed constant support during the night or started to wander and put herself in danger. This has never been a problem to date as she really does not go out unaccompanied.

Do you have someone who oversees the care your Dad receives Sally. Perhaps speaking to them and voicing your concerns that the current support needs to be upped would give you a bit of breathing space. Before this CPN was assigned I felt that we had been kept in the dark about things. It was only when I met her that we discovered that my MIL has been diagnosed with vascular dementia. No one had told us previously despite over a year of investigations. I am a bit more hopeful that her case is being overseen by someone who knows what she is doing and that when it is needed the care wiill be increased. Now we are just waiting for a very scarce day centre/hospital place to magically appear!

Good luck with things - it sounds if you have a great deal to cope with at present.

 

[Áine]

Gosh Sally, you've got your hands full haven't you

My dad was in similar position to yours up to about 2 months ago: living alone with carers coming in twice a day. Like with your dad, the carers kept changing, though some of them he was able to keep for quite a long while. They were good, but because dad was getting so confused it became more and more of a worry what he was doing between their visits. Unlike your dad my dad would go out on his own, partly trying to continue his life of popping into town and having his lunch, but increasingly because he no longer thought that his home WAS his home ...... so he was setting off to look for it. One very cold day he set off out with hardly any clothes on and it was decided that enough was enough and he went into respite, and from there has gone into permanent care.

I don't think I have any advice as such, just several thoughts from recent experience:

1) there probably isn't a RIGHT thing to do, so don't torment yourself about finding the perfect solution. I don't mean don't do your best, but don't expect too much of yourself either.

2) although I think dad needed to go into respite care and there was a lot of relief that he was safe there, I think his remaining ability to look after himself declined rapidly ..... meals were brought to him, they helped him get changed, he didn't have to worry about anything. ....... and I think several weeks in respite decreased the possibility of him being able to go home and cope again.

3) now he's in permanent care I don't have to worry and stress and work hard when I go to see him. I play games with him and look at old photos and watch videos of the things he's interested in. The care staff take him to the toilet, wash his clothes, give him his meals, sort out all the practical stuff - so we have much more quality time together.

4) dad is a bit more able than a lot of people in his nursing home. So part of me then worries that maybe he ended up there too soon. But I wonder if a positive is that care staff who will be there seeing it through with him as he deteriorates get to know him whilst he is more able and will then see him more positively as he gets less able.

Best wishes with it

Áine

 

[Norman]

Hi Sally
lots of advice there.
I do agree with Micheal about men thriving in a communal situation,activities and company.
I think they maybe relax when in a home,they have got rid of the responsibilities of looking after a home and themselves,they are spoilt a bit in a home and they like it.
Just my theory
Norman

 

[Amy]

Well Norman, that explains a lot. I have a husband and three sons - they are all living communally, relaxing, thriving and expecting me to do the spoiling!
Love,
Amy

 

[Michael E]

Amy that's sexist!!!!!!!!!!!!!!!!

do you know, one of the hardest things for me is the drudge of cooking and cleaning and house work. Really do not know why women do it (but thank god the have done so!)

michael

 

[Amy]

Michael,
That's what I keep telling them, but the faces they pull when I explain that it is a joint responsibility and I give them the vacuum and polish and duster. Part of the problem is that they don't even seem to see the things on the floor as they step over them, nor the dust on the cupboard, nor the pots on the sink!
Amy

 

[rummy]

AMy,

When my daughter was a teenager, she was that way too! She is still not a very tidy person but she is on her own so now its her business, My husband however is the neatest guy on earth! Makes my life really easy in that department! Like and Norman and Michael, he would be a good caretaker "if" I am cursed to get AD in the future.
The discussion on how men are more communal than women is very interesting. I just hadn't put any thought into that. I've always heard that men don't last as long as women when widowed, thus they often remarry quicker. Is it the military or other background or because mothers and wives have usually taken care of their needs all of their lives?
Sally,
I am really sorry for your situation, you do have your hands full! Aine's advice is great and I can't add to it but to say it seems that one sibling is always the one to step in and be the caretaker. It is easy to become resentful that they can carry on with their lives when we are dealing with this disease. Just know we all understnad the frustration you feel!
Debbie

 

[Michael E]

not all men are communal - there are a lot like me who are definitely not team players. I sail alone a lot, like being alone and I am not alone in this. Mind you I like woman around - to keep me warm but failing that still would not join a team or club.

There are however a majority of men, I think, who are team players - and a good job too. For them I am sure a 'home' team is probably really good. If all this happened to me I would try to top myself probably - if I could retain the concept of the objective.......

I get the impression very few women want to be part of teams... I think the majority want a 'partnership' or like me can work it out being alone... discuss!!!! Maybe I know nothing about women -

Michael

 

[rummy]

I don't think there is a norm for men or women. Some are team players and some aren't. I have been self employeed for so many years that I don't really fit in with the group thing myself. I do much better one on one, even with my best friends. I wouldn't want to go it alone though and like my hubby around to do things with, he is a gas to be around!
I don't do girl clubs well and find the chatter uncomfortable. Maybe I should have been a guy!!
Debbie

 

[SallyB]

Hi Everyone, Thank You all so much for your kind words. I have been so busy that this is the first chance i have had to get on to read your posts!

I worry about care for Dad so much because he always has been such a home bird. He has never really been one to join clubs, except for the Normandy Veterans. Also he has a small dog that has been his life for the last 13 years, I don't know how he would cope if we took her away from him.

I have the manager from the Social Services care team coming to see me tomorrow as I complained 3 weeks ago about the lack of continuity in Dad's care. On Saturday one of the carers told me that they juggle the carers on purpose so that 'service users and their families don't get too familiar' god forbid we can stop worrying for a couple of hours a day because we trust the carer and know they will look after our loved ones!

I have spoken to Dad's CPN, when I told her that Dad had deteriorated she said'are they putting his regular carers back in?' She is nice but doesn't seem to want to get involved in inter-agency talks. I think I will try her again. If I don't get any satisfaction tomorrow I think it is time to start writing some strong letters (cause I have got so much spare time to do it!) What beats me is that everything I read says that continuity is important, how can a specialist team not provide any continuity?

Does anyone have any thoughts on how you start to choose a Care Home for someone that you love so much? I would love to be able to visit Dad and sit with him to talk and look at pictures etc. All I seem to be doing is sharing myself around (like so many others I guess?) Does anyone have any experience of Homes in Leicestershire?

Sally

 

[pammy14]

Hi Sally

My sister has had respite care at Tilson House in Coalville at the Beacon unit which is a specialist respite for dementia. Tilson House is Local authority and seems very nice and excellently run.

 

[Lynne]

Michael,
That's what I keep telling them, but the faces they pull when I explain that it is a joint responsibility and I give them the vacuum and polish and duster. Part of the problem is that they don't even seem to see the things on the floor as they step over them, nor the dust on the cupboard, nor the pots on the sink!
Amy

Try putting a few pots in the golf bag, garden shed, sports bag, computer games cupboard, in the fridge next to the beer; even on top of the TV set!