Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Mum is back in CH. DH and I took her this morning. This time it is permanent though she doesn't know it.

Brilliant news that the CH have had your mum back, hopefully she'll settle down in time for christmas

Sorry to hear about fils eyesight. Would he consider coming back to the UK?

Mum now seems unable to eat solid food without vomiting it back up immediatly so dads giving her soft food and icecream which seems ok, though she's refusing a lot of things he tries. My brother suggested baby food. Dad told him he could try to get her to eat it - since it would be spat back in all likelihood.

Hello all. WBN fingers crossed it will work out this time. I hope the SWs back you up, based on the fact that carers could not cope and the home set uip was not safe.
CMOT sorry to hear about your mum, and the awful stress your dad must be under. Is your dad still willing to move, and to agree to your mum going into a care home?
As for my dad, he seems to be getting more confused by the day. I realised with horror. I only have 1.5 days' annual leave after Christmas, until April. I was planning on looking at residential homes in February. Dad is still quite active, goes into town every day, takes himself to cafés, off to church, goes shopping ( all inn a most eccentric, mishap ridden way). But can t remember basic. Stuff and gets flummoxed, then angry when anything unexpected happens. Bro seems a little better, I think he is taking his meds, he s going out and we even managing a few things he never could before. Like bureaucracy. I m scared to get my hopes up because with mental illness relapse is inevitable, but it was good to see him better.

CMOT that must be very difficult right now. Could the District Nurses help with suggestions as I guess they must see this a bit and might have a few tricks up their sleeve?

Sorry to hear about your Dad Bob. It must be very difficult juggling it all round annual leave. The anger is hard to deal with, there's been a lot of that with my Mother and I suspect a lot more to come. Good that your Brother is having some better days.

I'm trying to sort finances as her savings have run out. SW has sent info re the 12 week disregard plus putting charge on her house till sold. Problem is she wants it go with me to see Mum to do the financial assessment which given tha Mum thinks she's coming out won't go down well. I've emailed to ask what she suggests.

Brother is going to tell her it's permanent but not yet. I'm busy the next few days so keeping my distance for now, I want her to settle a bit.

Good idea, keep a bit of a back seat. I take it your brother's POA has not gone through with the OPG?

Best laid plans and all that.. Problem with meds, I get call and have to go charging around. Lots to sort and Mon-Wed next week busy with Mum related stuff but after that I am on strike till next year. Dad coming tomorrow which is good though lots of running around for presents today.

Can I tap your collective wisdom?
The mother of a relative has refused to allow her daughter to have a power of attorney for her and has had falls at home twice in a week and had to be rescued by paramedics. There are no other children, the mother has fallen out with all other relatives and her husband is deceased.
The daughter has arranged for her to stay in a residential home temporarily, but is concerned that her (very toxic) mother will try to leave and/or refuse to pay the costs. It seems likely that she will have to go into a care home permanently as there have been other incidents recently - what happens about paying for care and how does the Court of Protection get involved? The mother owns her own home and this would have to be sold eventually to pay for care.
The daughter lives about 2 hours away from her mother and would want to move her to a residential/nursing home near to where she lives - but how can she do this given that she doesn't have power of attorney and her mother would refuse? We suspect that the mother has dementia but she refuses to have any tests.

Hi Lilymaid - the first steps would be to get SS involved to assess her mum and decide whether she is what is referred to as 'competent'. If they decide she is not, then a guardian can be appointed by the court of protection to administer her affairs. But this is a very long process I'm afraid.

Wynken, make sure you stay on strike after Wednesday! Hope you have a lovely time with your dad.

Since dad moved mum to only very soft food, she's been quite good. Memory clinic on Thursday which will be a trial. DS has finished school for the holidays and dh was supposed to be off this week but can't now, so ds will be spending the afternoon with dad - he's never done that before, but dad has promised him a ride on the mobility scooter which he's looking forward to

CMOT thanks for your reply. It was what I thought. She's been trying to get her mother to agree to a POA for years but mother has refused to consider one ... so this means that outside agencies will be involved and the costs will be higher and the decisions might not be taken by the daughter.

Correct. I don't know anyone with an appointed guardian, but I guess it might be that they would take input from family members.

Is there anyone her mum gets on with? My dad was loathe to do a POA, but a friend told them that she had them (and is in fantastic health), most important thing you could do etc and that really swung the decision.

CMOT the mother is legendary - she won't have anything to do with the rest of her family and used to get her husband to take her to a supermarket in a different town as she might accidentally meet her relatives in the supermarket in her own town. Her daughter is the only person that she will interact with - her daughter's husband has had to sit in the car outside when they have gone to visit (2 hour drive each way) as she often didn't let him in the house! This was all before she was ill/demented. I don't hold out much hope!

I agree with CMOT. If the mother wont be reasonable she will have to bear the consequences of her own actions, or inactions.

She might try a last ditch approach saying she had heard that someone (neighbour, relative etc, no need to mention names) was considering reporting her to SS as unsafe.

Stark choice, either she grant POA to daughter or she will have all decisions made by SS.

My understanding is that the court/guardian process takes about a year. If SS decision to put her in a care home and she owns her own home, SS would get the money back from selling the property.

Your friend should talk it all through with the local SS. This can be done anonymously. I faced very much the same situation, though luckily the crisis which persuaded my mum to sign the POA was in the form of a broken hip not, say, a stroke. The priest, who she trusted, helped and was witness to her signature. Once done I had a few months of my mother railing about my interfering, but now seems to have accepted it.

Lilymaid your friend can ring Social Sevices and say she wants a third party phone call and under no circumstances is the phonecall to be disclosed to her Mother. With our SS there is a specific box on the system that the SW has to tick to denote this apparently.

SW has gone in today to do a further capacity assessment. She said we had to stop lying to her which is a fair point. I made it clear that Brother is Health and Welfare side so his area, I am joint on finances and trying to sort out her finances as savings now depleted.

If she has capacity (the CH said they think she might) then she goes home again as nothing SS can do. When I relayed this to Brother there was a very very long silence down the phone. He says he doesn't feel comfortable sending another live in carer as the working conditions are poor and Mum locks them in plus there's hardly any space.

So what happens next is dependent on whether she is deemed to have capacity and there is a chance she might by the sound of it. I imagine if she has capacity and comes home it will be with SS Carers. The rest of us will have to not facilitate in any way and wait for it to go wrong again. She is definitely sharper than last week having had a few days back on the Galantamine.

If she has to stay there will be an almighty explosion and I need to ensure not directed my way. However there has been enough playing me snd my Brother off against each other so i don't want to say it was his decision to pull the carers. We'll say it is SS decision and both stick to that. If she has to stay the CH will need to apply to do an emergency DOLs. I need a plan to manage phone calls if she comes home as she rings and rings if I don't answer and it's not bearable.

Just a quick one WBN I don t know if I s helpful to you to know, but. I always unplug the phone when. I go to bed and when I really need to rest. I don t rally feel guilty as I think I do plenty for dad and need some time to recuperate. Also I think dad gets into a "loop" ringing and ringing, which isn t that helpful for him. When I unplug I hank it just re directs I'm towards another activity.

Oh dear awful typos. This iPad is on it's last legs.

Thanks Bob. I was just discussing it with Dad and we agreed it would be sensible to keep the phone unplugged a fair bit if she comes home. Most people use my mobile number except our parents. Dad said he would start using it if that happened and FIL can always ring one of the others.

We'll have to see what SW says. Brother getting twitchy and emailed to see if I'd heard earlier. On the phone he said he can't go through the three months he's just had dealing with her again and acknowledges it was much worse for me.

I feel right now there will be no end to this stress. However much I try to remove myself, nothing changes the fact that if at home she is just round the corner . If she goes home again definitely time to remind everyone (including myself) that I am under GP orders not to be involved in her care.

Think it is going to take a bit if time for SW to decide as think she'll refer up to her manager just to be sure.

I am sure we will remind you...

I am sure we will remind you...

Further news on the toxic mother. She was taken to a care home for some respite care after her latest fall. Within 4 hours she had managed to call a taxi and leave for home! Daughter is now seeing if social services can do anything before mother has another fall.

Needmoresleep.

Lillymaid I think the situation is similar to my Miother's - it all hinges on whether they are deemed to have capacity. Under the Capacity Act people are allowed to make decisions that others consider unwise, as long as they meet the criteria laid out by the act.

For example my Mother might be deemed not to have capacity if she fails to be able to adequately assess the risks to her if she goes home. So if she tells the SW she doesn't need care at home because she did her own legs and had to remind the carers to bring her meds when that absolutely wasn't the case then she wouldn't have capacity. But if she says she knows she needs help but doesn't want it and understands she will become very ill without it, then she has capacity and SS won't be able to do anything.

Capacity often fluctuates as well just to add another complication. Your relative could probably do with keeping a written record so she has that to refer to.

Will you need a daily message Wynken?

Possibly CMOT ! Brother rang SW this morning, she is still investigating, so not clear cut I guess as suspected.

I guess it must be really hard to determine if someone genuinely has capacity - especially if like your mum they are good at putting a face on.

Got my CoP letters through today, so the PoAs are all sorted. Phew. Also managed to have a conversation with dad about 'when no treatment might be appropriate' which was good. Memory clinic with mum tomorrow - in spite of all of our efforts she thinks its to talk about her legs

Oh bless your Mum. My Mum thought her Memory clinic assessment was to see if she was fit to fly. Glad POA's through and that you had the no treatment conversation. Not an easy one to have.

Today has been manic. Brother spoke to SW again. She is borderline but doesn't have capacity. SW has landed the job of telling her. I'm keeping out of the way till she knows but want to go soon to get more of her stuff over there. She's going to be devastated when she hears she has to stay.

Because she's out of money I've had to think about selling the house and was given a huge helping hand by someone incredibly kind who arranged for five agents to give valuations. There is a viewing tomorrow and one Friday so I went in quickly this afternoon to tidy and declutter. Very pleased with what I achieved but feel quite bad doing it, though I know it needs doing.

This evening went to a carol service which I was dreading but was actually very nice and calmed my frazzled nerves. Horrendous wind and rain though on the way back and a tree blocking half the road.

What a day Wynken. Look after yourself - its going to be hard in the next weeks.