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

Didn't see you there PostBellum! How are you getting on sorting somewhere to live ?

Wynken, I have set up a permanent position on Rightmove. So far, no luck. Think I am going a tiny bit mad from thinking about it all so much. Sent an email to the estate agent and said that if we didn't exchange soon, I would have no choice but to push back completion - as I wasn't prepared to be homeless!

Hope your Mum's transfer home goes ok.

Has your brother graced the UK with his presence now Wynken?

Dad has been to see mum, and reports that now she seems quite bright. Though somewhat bemused by people asking her questions. Her nurse says she's staying in till they are sure as to what is going on. It is much the best ward either of them has been on though - at least so far

You have my sympathies PostBellum, it's very stressful moving and you've got so much going on right now. I really hope something comes up very soon .

No CMOT this fair and pleasant land has not as yet had the honour of his presence. ' Ha, not this side of Christmas and I'm not saying which one ' passed the lips of a friend of mine yesterday when we were idly speculating on his return date. There were more comments from others present at the time but I couldn't possibly repeat them on a public site.

I'm glad your Mum is brighter today and that they aren't trying to send her home until they have got to the bottom of what's going on. Good to hear the Ward is ok.

Ward social worker just rang - drs feel mum could be discharged today and what did I think? Well, I thought that discharge on a Friday afternoon with no care arranged, going to someone who is pretty unwell himself especially having put his back out trying to get her off the floor was a recipe for disaster.
And amazingly, they agreed! So, sw sorting out carer visits, and mum to stay in until thats in place. I nearly fainted.

Off to see her once I've collected ds from school.

Thing is surely this should be fairly basic stuff so why did they suggest it in the first place? Glad she's doing better and very pleased they listened to you.

DH took a call fom CH, seems Mum went home minus her Meds. They have my Brother's numbers now.

I know - and if they hadn't asked me, dad would have felt like he had to say she could come home.

They've decided on a TIA. She wasn't as well orientated in time as previously when I saw her yesterday, and bless her, was well confused by her bed. DS tried explaining to her, but its a bit much.

Dad not v well at all, and house yuck. He's trying a new home help as of Sunday who seems very flexible so I'm hoping she may help him clear up. Actually, writiing this, I realise the sensible thing would be to get her number and call myself. Only so much I could do last night, with most of my time spent on searching for mums nighties which she'd hidden. Got home at gone 10, and absolutley knackered.

I think that it would be a good idea to speak to the home help yourself if you can and fill her in on the whole situation. Now's the time to try and get him to accept as much help as possible, before your Mum gets home.

Glad they have at least worked out what happened to her. I think I'd be tempted to have another word with the ward SW and ram home the fact your Dad isn't well and that both of them will need a fair lot of support.

All calm on the Weston front here. Tomorrow I'm going to send the form to OPG resigning from being Attorney. I know Needsmoresleep will tell me I should wait and I might need to step in if my Brother doesn't step up but I won't be - as Dad keeps telling me, it's NMP (not my problem). Mum is deemed to have capacity and has full access to her account so it will be fine for another POA to be done.

I was explaining it all to a friend the other day whose Mum also recently diagnosed with mixed dementia. He's been through Alzheimer's with his Dad sadly. He is a drug and alcohol rehab manager and lots of experience with SS. Told him the accusations against me Brother and Mum made to SS but that I've been fully exonerated.

He said I was lucky they believed me as sometimes he's found it's not been the case. I am now very very angry as I want to know what our have happened if they hadn't - given I have children would SS Children's services had any involvement? All I ever tried to do was what the professionals told me to do. Guess as I am unlikely to see Mum again I am effectively going through the stages of grief and I think I have just hit anger, big time !!

You are right!

I think you need to have some counselling first to help you put both your childhood and recent events into perspective. Then make decisions when you feel clearer. Quite a lot of us wont have had a storybook childhood, and I suspect our mothers in particular were moulded by their own upbringings in an era where opportunities for women were often quite limited.

Is your brother listed as alternate? If not it really would be better to give your brother and mother a chance to look at options before making a unilateral decision. Give them a couple of weeks? Suggest to your brother than he arranges for his solicitor to make a home visit and sort it out?

I have got comfort from the fact that despite some awful abuse from my mother when she was at her most vulnerable and insecure, and some "interesting" behaviour from others, I have somehow found a way through and my relationship is now better than it ever was. It would have been as easy to walk, and I would have been fully justified in doing so, but glad I did not.

The POA and accusations are real issue and one I fully understand. This is potentially a very difficult problem for me, as WBN knows. It is odd how the focus is on protecting the elderly person giving away the Powers. Signing up as Attorney without legal advice means that you are vulnerable to all sorts of accusations, and any "wrong doing" is potentially a criminal act. Given the level of emotion that dementia creates within families this is not good.

My mother's affairs have been quite complex, and as Attorney I really ought to be making decisions around property and investment. Make the wrong one though and I could be sued. Ideally decisions would be made after consultation with other Will beneficiaries so that I cannot be held liable should say, property prices rise and stock values fall, and the estate lose value. This though is not going to happen, indeed it feels like it suits other beneficiaries that the risk lies entirely with me. The alternative would be to seek legal advice on individual decisions that I might need to make. However OPG confirm that any advice I seek as Attorney has to be paid for by me and not by my mother. I am, not surprisingly, not keen to have legal expenses become part of our routine family budget.

For almost all legal documents you are required to take legal advice before signing. But not Attorney. This is an anomaly. No other members of my family wanted to be Attorney and had I known the implications I would have been in a far better position to have negotiated something that protected me and my family. Instead, and in mid-crisis, I signed because my mother needed an Attorney there and then.

That said if all WBN is doing is paying standard bills, and allowing her brother to make decisions, there should not be any urgency. Signing or "unsigning" should not be done in a hurry.

I hope you are enjoying the lack of involvement. If 24 hour care works, and does not require you to keep propping it up, then that is a result. The grief, anger etc will be natural. You have really been through the mill, every which way.

I hate it when I know you're right . I'm not doing anything anymore, it's all on Mum's desk in files waiting for my Brother's arrival. I do have a debit card here. We are jointly and severally on everything other than the house for which we are joint. I imagine he will need to try and mortgage the house to pay for care unless he just pays it himself.

So far I've taken a call from the cleaner when her key got stuck (she knows not to call again), a call from CH asking for Mum's number (as she went home minus meds) and an email from Brother asking where Mum's iPad is, oh and one asking if there is cash in the house. Suppose it isn't too bad and mostly teething problems. The Gardener knows to contact her direct now . Thing is I seem to have yet another UTI I'm struggling to fight off still, never had so many in my life.

If I stop being a petulant teenager, to which I have been reverting a lot recently, I can see it doesn't make much difference if I stay as Attorney for another few weeks. I've just told DH that Needsmoresleep is talking sense again and he laughed !! It's true though, you just don't realise what a vulnerable position it puts you in until it's too late. Fine if it all runs smoothly but after what I've been hearing recently seems as if there are a fair few disasters.

Others feel free to join in....

Looking after a parent throws up all sorts of challenges. One problem with capacity assessments is that it is a point in time assessment. My mother was really lucid last night, perhaps the best she has been for three or four years. Almost no repetition and genuine recollection and clarity. However a day later and she has just phoned me asking why she is where she is. I know the answers to give (eg that she is staying through winter as she wants to avoid slipping on ice and breaking her hip again) and she acknowledges she is happy there, so it was pretty straightforward. I seem to be getting these "sundowning" calls about once a month. They are bizarre. And sadly, the shape of things to come.

Luckily she is in the right place to get support for her down, as well as her up times. And interestingly, when lucid, she has a good degree of awareness about her memory loss and so is happy to agree that she is in the right place and that she needs support. Plus the good care she is getting has really helped with the lucidity. "Capacity" is a minefield.

That is the problem isn't it NeedMoreSleep? My mum has had days when she knows no ones names, and others when she can even think to worry about birthdays. But the slide is down and down, and sometimes you only see the truth when someone is left to their own devices.

I have no idea about my Mother's capacity as I haven't seen her. I do know she responded well to Galantamine when first on it and being properly medicated, fed and hydrated she is assumably much better.

What I decided to do after sleeping on it is email him to advise I am planning to start removal of myself from POA soon. He responded that is fine and to le him know when through. A solicitor is going next week to do the Health and welfare POA. I've asked him to check if it's better to simply do a new financial POA. Also Mother's solicitor wrote to her on receipt of my letter stating I had requested her will to be amended and in the event of her death before this occurred I will not be a Beneficiary or Executor. Brother is ringing him today.

Reminded him I am Company Secretary of his business and need removing. So I think that wraps everything up and i will be soon effectively divorced fom them (new one to me but a familiar one for both of them as Brother cut off Dad and Mum her sister). Apart from maybe I should say she is welcome to see the children if she and they want to. They are old enough to make their decisions and she's only rind a few corners, they can both walk if they want to - or do I leave that?

DH says not to mention the children so I'll leave that.

I agree on the latter.

It is all early days. Your brother may be thinking that now a few initial teething problems are sorted, the problem is solved. It is not. The dementia will progress. And you cannot be sure what you or your children will feel about contact when it is all less raw.

Getting the solicitor to sort out all POAs at the same time sounds like a good idea. They need to be in place. I assume your brother now becomes sole Care and Welfare POA. Curious why he is so confident that he can handle everything from the other side of the world. He appears to be reading the capacity assessment as confirmation he was right all along and that there is nothing much wrong.

What happens next? Unless the 24 hour carer proves to be the solution, presumably either your brother or mother need to decide things aren't working, or at some point SS will decide your mother is unsafe and will then have to use their legal department to take on your brother's lawyer. You are best off out of it!

I know it is early days. But I know my Brother and Mother. Neither have any problem cutting off from people , Mum is at about 12 years post contact with her sister, Brother is about 5 years with Dad. To be fair he did say he wanted to go out for a meal with Dad when he gets back but Dad said no. He wasn't saying no never but that can't just cruise back in after Dad was left without knowing why his son had cut contact. But seeing as Brother didn't bother to approach Dad and did it through me he doesn't know that.

The children know that if they ever change their minds about seeing their Grandmother then that is fine , though I'm not convinced she would see them, she's never been keen. That might have been the Dementia though.

My Brother has a supreme confidence in his ability to be able to manage anything so being sole Attorney for both LPA's is very in keeping. He said to DH if live in care fails she will be going back to a CH. I just think it is extremely bad he has let her go home with someone living there who he has never met. But she has capacity and it is her choice too. I think once legal stuff wrapped up I won't hear from them again, though might possibly hear from SS at some stage, or possibly not, no idea.

and now my dads been admitted to hospital too.... Feel awful as he'd left message on my mobile which I hadn't seen yesterday and I'd been ringing him at home

Oh CMOT, I am so sorry . Do you know what's wrong ? Please don't feel awful, we've all done it with messages. You know now and that's the main thing.

Dads had a heart attack. Both in same hospital.

Deep breaths CMOT, that must be a shock, take a moment to digest it. It's good they are in the same hospital. Do you know if the SW dealing with your Mum has been told what's happened ? One step at a time is going to be the order of the next few days.

Poor you. Your poor dad.

Oh my goodness CMOT - so sorry to hear both your parents are in hospital. Your poor Dad.

Big hugs to you too - sometimes it doesn't just seem to rain it is like bloody buckets of water being chucked at you.

Did the usual trek down yesterday and found that Dad has deteriorated even more. He is so agitated. Whereas last weekend, he couldn't stay in the same place for more than a few minutes, this week it was even less than a minute. His endless restless wanderings are exhausting, because he cannot be left unattended for a single second. His sleep patterns are also completely out of kilter, so he'll go a couple of days & nights without hardly sleeping at all - just dozing for a few minutes here and there & then he'll go for several days where they have to wake him to feed him. Mum has been phoning the Elderly Patients Mental Health specialist at her health centre to get some advice, but she hasn't returned any of the calls, so Mum is going to go and see the GP today. She is hoping they can give him some meds to try and help him sleep at night, just to normalise his patterns a bit (she does have a carer come in at night, so she can sleep) and something to reduce his agitation during the day. Does anyone have any experiences of these types of medication?

I'm sorry PostBellum, that's not something I know about at all. Really feel for you and CMOT and wish I had wise words of comfort

Well, one trip to their house, application of much bleach, cats fed, clothes tracked down, hospital visited x2, returned home.

Dad wasn't very accurate in his description - he'd actually had one of those episodes where your heart beats very fast and not rhythmically. Still v unpleasant though.

He's also had episodes of hypos while in, was having IV fluids, and had had a contrast CT scan.

Mum very tearful and near hysterical about it, but ward still holding onto her and being v good.

PostBellum - if used properly, the drugs can really help with that sort of thing, just need to keep an eye out for any side effects

Sounds like a long day for you CMOT. I'm glad it wasn't a heart attack though.

Mum has a nurse from the elderly health team coming to see Dad tomorrow to see what medication might help. Mum is exhausted from trailing around the house after him all the time. She even has to remember to go to the loo while the carers are there, as otherwise she has to lock Dad in the bathroom with her.