Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

Well, just heard from the hospital Dad is going to be moved to the care home tomorrow. I feel quite sad about it, it;s one more step on the horrible dementia journey. Rang bro to tell him and he just put the phone down. I know he'll be cutting up very rough about it, and probably entertained fantasies of Dad returning home.
Can't face going there this weekend, am planning to visit next week.
If anyone can give advice on helping parents settle in/ how to work best with care home staff/ things that might make his life better there i'd be grateful.
Dad's deteriorated a lot, he is in bed all day, you'd think he can't walk anymore, but gets up at night, walks around, and resists being put back to bed. He is doubly incontinent, and speaks in just a few words at a time. It's horrid. I don't think he'll mind being in a home now, I really am not at all sure he has any sense of his own home anymore.

Oh Bob, sorry to hear you are feeling upset It does sound like he will be I the best place. You are right to get yourself together before going to visit.

My DM seems to be on a rocky patch. When I spoke to her yesterday she sounded terrible and said she was very tired so I said go to bed. She rang me at 8am today and said she felt better but was very difficult to understand. Still 2 weeks till I go back up there, but she did speak more positively about the carers. Not sure what to do about still meeting with the other care agency

Oh Bob and Tilly- I am so sorry yo gear what you are having to deal with.
Bob- that sounds so hard- no wonder you feel upset. Things from home for your dad- pictures etc and information about him for the home- what he likes/ dislikes re food etc- photos with names so they can mention people and understand his family context. And what he liked on telly etc... Really hard. How are you managing at work? The nocturnal wandering etc is very common- sundowner syndrome? And look after yourself.
Tilly- sounds might be worth going ahead with meeting just to see what else is available. Back up us always useful. Take care.

How is your Mum now BBB?

Bob it is hard, even when you know there is no choice TheSandwich has covered it I think. Hard for your Brother too .

BTM I think I would have the meeting just to see as TheSandwich says .

Thanks - I am going to take your advice TheSandwich and SugarPlum! I have also arranged to meet the solicitor to check about the Enduring POA and I am going to see if I can fit in a Care Assessment meeting too!

Yes, BBB, how are things?

BBB how are things going for your DM? Hope things have been going well.

Bob Sorry to read that you are having a tough time. Is the care home somewhere that you have seen and are happy with? I do know it's hard when that time comes, but I also found it a bit of a relief. I no longer have that heart flip whenever the phone rings because I know that mum is in good hands and it is not going to be dad having a panic down the phone that I will need to go and sort out myself at all times of night and day.
How is your brother now? Is he getting help, too?

Sugar My parents had 2 agencies working hand in hand for a while. It worked well and neither minded. Don't be embarrassed to get whatever is best for your mum and you.

Well, things here are in the middle of going spectacularly tit up!!! The CQC have contacted me to say that mum needs to be moved from her nursing home because she should never have been allowed in there. Long story short - useless SW from hospital did a nursing care assessment in September and deemed mum compos mentis and not needing any care. That assessment is on file despite EVERYONE else who has seen mum laughing at the stupidity of the SW. Now the CQC say the report says no nursing care needed so we must find her another care home. We are paying £1000 a week, so in my mind we should have a say in where she goes. Apparently not!!! We have not dare mention any of this to dad yet as he will just not cope. We have demanded another assessment be done, but not sure if they will actually do it. The home she is in is perfect in absolutely every way - other than the fact you would never want any relative to actually have dementtia and end up like that. Dbro was going to speak to the home yesterday, so just waiting to see what their take on it all is.
Add to that the fact that DBro went to visit dad at home this week and found dad in a right state. Apparently he is trying to find something in the house that he "must" find before he dies because he never wants any of us kids to see or know about. Dbro thinks that this is evidence of some big family secret that mum told him about years ago and he believes that mum destroyed all evidence years ago. DBro has promised mum he would never mention it to anyone, and has now promised dad he wont tell us what it is - so DBro, being the loveliest man ever will not break any of these promises until mum and dad are both no longer here. My mind is going into overdrive about what this could be. I am sure the scenarios in my head are million times worse than the reality probably is. I have had bro tell me that we dont have any secret siblings lurking.

Have a good weekend everyone. Lovely bit of crisp sunshine here today. although it is bloody freezing

PA, you may find that Nursing Home managers are the experts in how the system works as they have had to deal with errors etc so often....and have an incentive to ensure SS funding where possible.

Family secrets?!

And Bob, don't feel guilty if you are reluctant to go down. Put it down to recouperating, mourning, or simply the need to refocus. You have done a huge amount for your dad. The care home may not be perfect but hopefully it is good enough. And if not you will need to give them a few weeks before you can be sure. My mum's sheltered housing reckoned it took up to two months before a new owner adapted to the move. And also the energy to go into bat. Let him settle and then visit.

Well, I did go to visit Dad yesterday because he was transferred with no clothes at all so I had to go to his home to pick up a load of clothes then back on the train to the care home. It was quite sad to be truthful. he was lying in bed and didn t even wake up when i arrived and stood there having a conversation with a carer. The staff I met including the catering staff were kind. However, I can't get the thought out of my mind: this is where's he's going to die, a bare little room in a depressed seaside town. Of course i'll visit again and take photos etc. The room was so stark.
I stayed about 2 hours, of which he was awake for about 45 mins. Maybe the transfer from hospital exhausted him. Not even sure he recognised me. Didn't get a v good sense of the place, couldn't face knocking on the office door and introducing myself to the person in charge etc. Got home, cut my finger when slicing bread and cried for about 10 minutes.

So sad.

One thing I was told to do was to move in some familiar objects, photos or pictures. I did this in installments whilst sorting through my mums stuff. One thing that worked was an old laundry basket that I remember from my childhood. Its strange. My mum is now surrounded by things she bought when she was first married. She also seems to like bright childlike things. She has turned into a bit of a magpie.

And books perhaps. Even if he does not read them your dad sounds like the sort of person who would value them and enjoy seeing them. Even a LP or two.

Thanks NMS yes definitely I will be bringing those things, maybe hiring a car so I can take a good selection. He loved books and even carried them around like a comfort blanket well before he had dementia. Some photos would be good too and maybe some of the picture s he had on the wall in his bedroom.
If they allow I will bring a proper eiderdown with a colourful cover, not the clinical white thing he has now. Bright childlike things are good, I'm thinking some old National Geographics and he can look a the pictures. It's like babyhood in reverse. Maybe a colourful mobile? :

Oh Bob I am so sorry. The move will have exhausted him- and lacking sleep etc too. Nms has good advice- objects give the staff something to connect with too. Look after yourself.

They sound like great ideas for your dad, bob. So sad, the seemingly quick decline - hopefully it's just a blip he can get over

Spoke to DM who says her sewing machine (which she uses a lot still) is broken and is very upset. I have told her NOT to put it in the garden (as she did with the microwave) and I'll look at it when I go up. She was not at all keen on the idea of a new microwave. She told me that she had mixed some yellow powder with her warm milk and then read out the label to me - custard powder! Can't do her any harm, but I'm not sure what it would taste like in warm milk. Which I guess she warmed in a pan on the stove

I'm sorry Bob, it's very hard and I totally get your sadness. What is it with transferring minus clothes ? Same happened once with my Mother.

The pictures from his bedroom a good idea as is eiderdown if allowed. Books will definitely make it look more homely. Do you need to label clothes or do they have them own system? I found Stikins made that easy, though hated the fact there was a set for her along with my DC, seemed wrong.

Oh Bob sorry it has been so hard. I hope your dad settles quickly and the staff get to know him quickly as that seems to make a huge difference. It's a good idea about getting some nice "things" around him. My mum likes photo books with local pictures in that we look through again and again and it gives a focal point for me to talk about when I visit.

My sister, who is on holiday abroad had 6 missed calls from mum's nursing home this morning and when she phoned to find out what the matter was (fearing that she had died) she was told that there had been an "incident" first thing this morning when a male patient had been very inappropriate and had tried to get mum's skirt off her with hands up her legs! All dealt with very quickly and very well by the staff. Poor grandson of the man is absolutely horrified his grandad did that. Mum is totally oblivious and we are NOT going to tell dad. He would go ballistic!!!!
Also the home have confirmed that we need to look for a residential home for mum as she no longer needs nursing care level. Just as we had mum settled in a perfect home where people really seem to care and we were all happy with it. Back to square one again!!!

Thanks for your kind words everyone.
PA you are right not to tell your Dad about the incident. I used to cover a couple of nursing homes in my last job, and this disinhibited behaviour is not entirely unusual- only ever came across it in men with dementia though, not in women. Poor grandson!
So sorry you are having to go looking for a new place. It never ends.
SPT I'll be sewing labels in, have already ordered a lot of 'tinternet.
BTM- I suspect your mum loved the custard milk, if she's anything like my Dad (and many people with dementia) she'll have a passion for sweet things!

PA for your DM - you are right not to tell your dad, what good could it do? And how sad/frustrating, etc that you have to move her again.

bob, I think you're right - she has loads of biscuits/cakes/icecream, etc in the house! She has always loved sweet things anyway. Not sure exactly what else she is eating, though she seems to often have eggs.

Oh goodness PA Agree you're right not to tell your Das. My Mother was attacked in her first home one night by the guy next door who was trying to hit her with his stick. He'd had a nightmare and had no idea what he was doing and didn't remember. His poor daughter was mortified and came to apologise to my Mother. It's all dreadfully sad.

Bob put the needle down in future, Stikins take seconds !

Oh yes, no sewing Bob. Black Sharpie is your friend! (experience of 5 DC and a very lazy mum when it came to labeling clothes for school)

I agree Sugar I feel more sorry for the man's grandson who is mortified at what happened. Mum is fine. Definitely nothing being said to dad.

I have spent a depressing afternoon on the phone trying to sort mum a new home placement. We live on an island, so our options are somewhat limited. I started with our first choice and went down the list in order of places we would like mum to go to. I am now very near the bottom and well into the realms of "much less than we would want for mum". Nowhere will take her. Her needs are too high for residential care apparently, but too low for nursing care. It's all a bit depressing really!

Poor PA- it just seems wrong that people are left to struggle and find places. Had a weird experience at work with a very upset patient's wife. She cried when the speech therapist, specialist nurse and i recommended a gastric feeding tube for her husband, and called the consultant who said very firmly "there is always hope for improvement, you cannot destroy people's hope"- (the man in question wants to be able to eat again one day). I agreed heartily.
Then thought back to my dad, who has no hope of recovery and that was outlined very starkly to us by CPN, OT, Physio. Bro is still in denial and today texted me saying "I've seen on the internet that coconut oil and turmeric are very good for Alzheimers. What do you think?"Still haven't answered him, not sure what to say, he is so far away form realising/ accepting how ill Dad is.

Thanks SPT and PA it'll be Stikins and sharpies all the way once i've used up the labels.

Oh Bob and pa- so sorry about what you have to deal with. It is so hard.

Bob and PA much hugs.

So I had an email from the Carers Manager today. She says the carer went with DM to the opticians appointment, but DM was insisting on taking her sewing machine as it is broken. She could not be dissuaded.
I rang DM and I couldn't really work out what she was talking about. Very confused and word-finding worse. I think she may have had a TIA as well as a UTI.

At least she doesn't seem to be moaning about the carers! Have got them going in 4 x a week now, but I think I will up it to every day unless that seems unnecessary when I go up in a week. No idea how she is managing any shopping Will ask the carers to check/ask if she wants them to go with her tomorrow.

Oh Tilly! That is hard. Sounds like the carers seem on the ball. Could you give them shopping checklists? Good luck. More visits sounds a good plan- perhaps your smile has now accepted this us how things are.