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.

That CMOT is most excellent news and I love most excellent news ! Yes please if you have a moment on the pain scale.

I didn't watch the Angela Rippon program For similar reasons. I nearly didn't watch the Horizon one but am glad I did as fishes more on the scientific developments which were surprisingly encouraging.

Don't worry CMOT, I found one. That's going to be very helpful, thank you.

Glad your DP's are doing well CMOT.
I watched that programme too and was a bit - none of those featured remotely resembled my DM, but maybe that is because she is much further along the road. It was a bit Pollyanna, wasn't it?

The managed of DM's Nursing Home rang me the other day and said that she is also concerned about her - she is more able than the rest of the residents and seeing them deteriorate is difficult for her. So they are going to do more special activities with her/take her out more, etc. And apparently there is someone new moving in who is more on her level, so fingers crossed they hit it off!

SugarPlum

I too avoided the documentaries. Over the past year or so there have been a couple of saccharine books and even a MN chat. I find it hard to see anything positive about dementia. It's simply a slow death as the brain gradually gives way, and so a lengthy process of management and bereavement. Looking back I preferred teenagers to toddlers. My mother is now my, quite awkward, toddler. One day she will regress to being a baby, winding up in a fetal position. Awful.

I also don't like the message that by adopting the right lifestyle you can prevent dementia. It suggests that someone with dementia is to blame for their condition. My mum was always active, never smoked and barely drank. Physically she is in great shape. Mentally not.

In the meantime legal problems concerning one of her properties. Along with neighbours I will probably have to go to court, and am told we have an exceptionally strong case. But I don't need it. Though I am finding that I have got a lot better about not taking on board stress. It turns out that there is a whole extra set of paperwork to be completed before you can litigate on behalf of someone else.

CMOT I am really glad to hear that your oldies have achieved a level of stability. Are you finding that your exhaustion is catching up on you? You really have had a rough few years.

Hello, can I join? It may be there is a better thread for me as it is my FIL (83) not my parent and we aren't actually carers as such. Let me know if there is.

Briefly - Fil lost MIL 5 years ago. He lives 1.5 hrs away from us , and DH has 2 siblings - one an hour away from FIL, one on the other side of the world. Fil is very deaf - so it is hard to contact him on the phone. He is forgetful but more because he doesn't have much to do I think rather than more serious (and sometimes I think he uses it as an excuse for things he doesn't want to do . ) The house is now really quite dirty - he will wash up after himself but general cleaning just doesn't get done. We did try with a cleaner for him but he didn't like "people in the house" . We have arranged a gardener so that , on a basic level i.e. keeping grass mown , tidying etc is done. DH and his siblings have talked about a POA but he is resistant (although we believe he has lost his pin code etc - he seems to manage on a monthly trip to bank and taking out a large amount of cash.) DH had to sort a tax thing out which was really Fil not bothering - bit confused about it, not much money but had been dragging on so the fines were way more than the amount involved. He is quite stubborn and used to being "head of the household" (that makes him sound worse than he is , he is actually a very affable and lovely chap - just stubborn and proud , I think he either doesn't realise or won't admit he needs more help. DH and his siblings are increasingly worried about him (driving is another one) but not sure what to do. Fil is a grown man and you can't make him do anything.

I'm not sure what I want to say at the moment - but have just found this topic and it is something of a relief to see others with the same problems. I have read a few posts and one thing DH and I discussed which I see has come up before is that we may be in the position of waiting for some sort of crisis before Fil accepts he needs more help .

Sorry for that little offload. Do let me know if there is a better place to post.
G

Gloria, you are very welcome to join us - caring isn't just about physically being there (I live 80 miles from mine, work ft, so I'm not there), its about fretting about them, dealing with things for them, and the frustration of trying to get them to accept the help they need.

Unfortunatly, a lot of the time it does take a crisis to change things, but you can set the groundwork by lots of chat about 'gosh, you get a much better deal by paying by direct debit, I could set that up for you dad' 'oh, my friend was telling me how their dad had scrapped the car and got a mobility scooter, you won't believe how much they saved, even taking the odd taxi!' and so on. Then one day it might be his own idea!

NMS - no exhaustion hitting - they are still keeping me on my toes and both are still slowly declining, but no one has been in hospital for months. In fact I need to plan to go and see them as I'd got so used to fire fighting, I hadn't had to plan a visit for years

CMOT can you make a weekend of it? Stay somewhere nice, take your family and plan a few treats, one or two of which are also suitable for parents. I still have memories of pushing my grandfather around Key Gardens in a hired bath chair. He did not normally use a wheelchair but it allowed him to be a lot more mobile. I was about 10 so raced my brother whilst pushing him. A chance for proper quality time. It really makes the grim stuff easier.

And Gloria, I am about 100 miles or so away. DM would not let me care for her even if I wanted to. But there is still a lot to do.

Hi Gloria, I am 200 miles from DM! It sounds like he is beginning to need help - CMOT is right about finding ways of helping them without them having to lose face. Not easy!

Hi all. My DM has now been assessed as requiring Residential Care - she's quite happy about this as she doesn't like where she lives at present (sheltered housing) and I've been looking at local places that she might like.

I'm reading inspection reports, looking at the staffing levels, how content other residents seem, no odours and general atmosphere.

Is there anything else I should be asking/looking for?

Grateful for any suggestions!

Ange, my DM is in a Nursing Home. It is was taken over in August, so no current inspection report to go on so I just went with gut-feeling!

It is clean and nicely decorated with a range of different seating in the lounge (rather than uniform looking OAP chairs, IYKWIM!) and there is a "quiet lounge"
The staff are very warm and friendly - a range of ages and cultural backgrounds, male and female. I have seen them with both DM and other residents and I like the way they interact with them.
I feel that the manager is professional, capable, approachable and also has a vision for the home and is putting individual strategies in place for DM
There is a dining room with menu up every day - 4 smaller meals (gives them something to do/splits up the day?) and DM loves the food!
They come round regularly with drinks (important for them to drink enough)
There are group activities, but they are also able to sit in their rooms (DM likes doing painting, etc)

DM moved from her own home (where she lived independently, on her own for nearly 35years) She begged the SW to move her into a home when her GP raised the alarm that she wasn't coping (despite carers visiting daily) but she has found it really difficult giving up her independence.

Thanks bigTillyMint,

That's useful to know - I have a feeling the 'reality' of the move will be different from how my DM imagines it. She has carers too, but she is scared of being there alone at night and is very socially isolated - I'm hoping that a residential setting will be good for her.

Thanks for sharing your experience.

Hello all. Ange- watch how staff interact with residents. And also see if there are any residents who your DM will be similar to- a new resident moved into fil's home and she is pretty with it and they talk to eachother all day- the conversation has made a massive difference to fil.
We went for a home for mil with dementia because the rooms were modern and spacious but didn't clock the fact that the staff were constantly talking to eachother and not residents.
Good news CMOT about lack of fires to fight! Quietish here too touch wood- organised carers/ cleaner/ gardener/ hairdresser/ chiropodist and masseur to visit DM which keeps her busy.

Ange, I think its useful to look for residents who are like your mum and see what they are doing - for instance, mine is antisocial, so I'd want a secure garden that she could access - totally fenced obv, no steps just very gentle slopes, raised beds, lots of benches, no trips or hazards. A quiet room looking out somewhere (I ran past a care home in Manchester with the lounge obviously on the 1st floor so they had a great view up and down the street which I thought was good), some sort of independant activities laid out to encourage participation. Dad otoh, would enjoy a more social aspect with things going on - being able to have a beer sometimes for instance.
Meal times are very telling - are those being fed just having it shovelled in with it all pureed together, or do they try and make it interesting and chat while sitting with them. Are people gently and cheerily talked through eating if they need it, or is it plonked in front of them and then they're fed if they don't eat it

Mine aren't in care yet, but as they lurched from crisis to crisis I've been thinking about this a lot, and looking at places. I've seen a few which appear to have lovely gardens, but which aren't secure. Or that have steps, so residents never go out in them.

Thanks CMOT - I've been to see three so far and two more planned for tomorrow. I've seen one I quite like - it doesn't have much outside space but has a sunny lounge area. I was impressed at how friendly the staff were and how they encouraged me to call in anytime. The person in charge even advised me to call in to see care homes at all hours with no warning to see what they are really like!

We've been doing crisis management for a while now and it's really left me burned out. I'm just scared I will pick the wrong place or DM will hate it once she's there. Always something to be worried about!!

I don't think that they need much outside space - its not like the residents will be running laps! Better a small area they can enjoy - and encouraging you to drop in anytime is very positive.

Remember you can only make a decision on what you know at the time. Don't second guess yourself, or feel guilty up front

ange, it is entirely possible that she will hate any place when she is there. Just do the best you can - if you feel confident that they are providing the kind of support you want, then you will feel better.

You are both right - strange how guilt comes so easily but any type of self congratulation on coping so far is completely absent!

I'm hoping she will feel more secure and there will be people around to help her with everyday stuff - all we can do is our best.

Thanks again everyone

I think some people are never entirely happy in care but it's about the loss of independence and the fact it isn't their home. I like the sound of the encouraging you to drop in any time.

Bit of an issue with my Motyer. It sounds like the Carers' views are that life is sacred and there is a huge reluctance to let nature take its course. So the entire day is based around food, one spoonful being fed to her after another and trying again if refused. She's on the higher dose morphine and sleepy but Brother waiting to be told the dose is too strong as she's sleeping all the time.

We want nature to take its course now in accordance to her wishes. Food as and when she wants it but not a constant mission to get it down her. One of the Carer's Dad had a PEG feeding tube shortly before he died of cancer and this is far removed from what my Mother would want. It's very hard when this is their culture but I'm finding it a bit distressing as there's nothing left of her anymore and she wouldn't want this.

Sugar, my heart goes out to you - that's so difficult.

Thank you Ange. Email did come about the sleeping and feeling it was pushing her heart rate too low potentially. My Brother replied bluntly that it would be a peaceful way to go. He's going to have a meeting when he's back in there emphasising that we as a family would rather too much pain relief than too little and that we feel constantly feeding is over riding the natural dying process and it isn't in accordance with her wishes.

SugarPlum, it sounds like your brother is going to say the right thing - I hope they take it onboard

Hello, I was going to start my own thread then spotted this one and wondered if I could tag along? Just feeling a bit anxious today- dads in a nursing home with late stage vascular dementia and Alzheimer's. Today the nurse in charge suddenly asked my mum about whether we have health and social care POa (we don't annoyingly as our solicitor fuxked it up ), what funeral director we would like to use, whether we would like a priest to visit, and whether he has a living will (I don't even know what that is- he has a will and I have signed a DNR- is that what it is??). Anyway just feeling a bit worried as its coke out of the blue and I'm wondering why??? Do they know something we don't? Do they think he's coming to the end???

My advice would be for you and your mum to write out an end of life plan for your dad and give it to the home.

Both my parents died recently and it really helped all the professionals.

If you want to know what it said I can post here or pm you.

My son is a paramedic and he was very impressed with her care home for their handling of my mum when she had a stroke. She was 94 and had Alzheimer's, and when we arrived at the hospital the doctor had the plan in his hand.

My stepfather was admitted to hospital from home, and the end of life plan, prevented him from going to ICU, thus having a peaceful death without intervention.

I am sorry you are going through the this, but it may be just a natural,procedure for the Home rather than an imminent problem.

Hi Kenworthington, it could just be that they are updating paperwork (or have been reminded that things are missing from his care plan), and want to get these things recorded. There are better ways to ask these questions of course, but it is good if they can refer to something rather than bombarding your mum with questions at the end of your dads life.

A living will is more than a DNR - its an expression of wishes (I think the correct term is an Advance Directive) about choices at the end of your life - choosing to stay out of hospital, not going on a ventilator, that sort of thing.

But you can def ask the nurse about why they have asked.

SugarPlum, I'm glad your brother is onboard about ensuring pain relief is really good

Thank you, we do seem to. Be in the same page finally which is actually quite conforting.

Kenworthington, it's very hard to be asked this sort of thing but we were each time my Mother moved to a new home (frequently, see previous comment re being finally on same page as Brother!) . Definitely worth having a discussion with the Nurse though as you'll be always wondering otherwise.