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

Thankyou, that sounds like a good way to approach him. I will try. I think he is coping with a lot atm, his own mum passed away recently so he is kind of avoiding the whole subject and keeping his head down.

All the best to all of you here. xx

Hello All

Well good news from this weekend. Mum's knees considerably improved and her mood much brighter. Took her to a lunchtime concert and out for lunch - we both had a very nice time.

Good to report the ups as well as the downs.

Amazing to realise how much a good weekend will improve my own mood as much as a bad one will cast me down.

I hope everyone is doing OK.

Went to see dad today, I am so excited the prospect of him returning home. But they wouldn't let me in due to a d+v outbreak :(

Alice It's lovely to highlight the good times. Its so easy to get bogged down by the bad days and not notice the good ones.

Kalm I hope your dad doesn't pick up the D & V and I hope you get to see him soon.

Oh flip, laptop has stopped scrolling (very old laptop in need of dumping but I am trying to limp through to January!) So sorry, I am not ignoring the rest of you!

I have had a couple of days "off" from mum and dad. I feel very relaxed, but now I the guilt is beginning to creep up on me. I will take up the mantle again today. (they were not neglected, DD3 and her DH have been and visited and DBro and DSis have been doing the daily stuff. I am very grateful that we can work together after reading the horrible stories on here of when it goes bad! - sorry, that is not meant as a gloat, it is me being thankful for my situation, I feel real bad for you who have trouble with siblings, this is stressful enough without added trouble. 1 of my siblings is a little "difficult" but I normally take on the role of diplomat when things get heated.)

I hope the meeting goes well today Kalmand you can him out of there very soon.

Agree it is great to highlight the good times and really pleased you had a good weekend Alice

Don't worry PA that didn't come across as a gloat. Reall pleased to see some families can manage to be sensible after the train wreck that is mine .

CMOT , Bob, Pudcat and Needmore* how it it going your end? Sorry if I have left anyone off.

First counselling session today. Went well and very liberating. I feel all set to see Mum tomorrow.

Lovely to hear of a good weekend Alice - its easy to forget the good days.

Fingers crossed Kalms, and a few days off is what you need PA.

Fab on the counselling Wynken. I was amazed at the difference counselling made for me.

Mum starts a different AD drug today, so we'll see how that goes. She's def had an overall downturrn after last weekends shenanigans, but is eating soft food again. Though rejecting everything with 'bits' in. Bits is the new term for just about any object or item though.

She did make a lot of effort to tell me that she'd like a new mug, so ds is decorating one for her now to replace the one she was fixated on.

God bless Andre Rieu, just as I was wondering what to get Dad for christmas, I see there will be a new Andre DVD out in time for christmas. Mum gets so confused by tv programmes that they just watch DVDs, and though mum seems to only want dads army and Fred Dibnah (weird, she never liked them before), but dad holds firm to AR to alternate with

PositiveAttitude I like your post. Good family relationships should be cherished. Dementia seems to highlight any fault lines. DB was always my mother's clear favourite, yet he seems to have found it difficult to cope with her decline. Now things are more settled in that she seems happy and normal till you realise she has no memory, he seems to be stepping back into the frame in terms of visits, phone calls etc, and has even invited her to stay for Christmas. (5 days!)

However he still seems unwilling to have direct contact with me, which makes it difficult. I am POA and legally responsible for managing significant assets, and would really like to make decisions by consensus. (I am quite worried about the implications should I make financial decisions which subsequently prove to have been poor. The Office of Public Guardian have confirmed that legal advice to an Attorney about my role would need to be funded by me, so I am stuck trying to avoid decisions and hence stuck managing rental properties all of which seem to have faulty boilers!) It would also be useful to co-ordinate visits, not least because it might save me a trip or two if he were prepared to use his visits to run the odd errand. This last year has been tough and it would also be lovely to have some positive feedback, rather than simply have my mother's complaints passed on.

Still it is progress and is making my mother happy. The complaints are falling off. Perhaps because my mother is getting used to things like the carers coming in. Perhaps also because with more contact, he is starting to understand why some things, cheque book and pills, are kept out of reach. All a lot better than a few years back when he wrote to my parents setting out why I should not be made POA, but then left me to clear her flat... and to read what he thinks about me. Hopefully things can improve still further. We got on quite well as children. I miss this.

Hi everyone. Glad to read about your various successes. WBN good to hear the first counselling session was so helpful. I think if I wasn't having it (and it hasn't always been comfortable) I'd be a gibbering wreck by now.
Dad came over at the weekend (DH went over to do some maintenance and brought him back), on Suday I put him on the train and asked the guard to make sure he got off at his station, to cut a long story I got a call from the police the next day saying he'd been found wandering around a village (on his train line)and was picked up by 2 elderly ladies. Yesterday, phone call from Dad "I've got some apple juice for your boys and I'm coming over" me:"NOOOOOOOOOOOOOOO". I am going round tomorrow, have to meet with brother's case worker to talk re sheltered housing, then bring Dad to London because a friend of his has invited him to a concert, then back to my place, then take Dad back to his home on Thursday. No more putting him on the train, I'll have to take him all the way home, it will take out most of the day. I'll be exhausted.
Dad's short term memory is virtually non existent now and mishaps are getting more and more frequent. He has been ejected from Poundland (not sure why) and got into an altercation with a couple whom he accused of stealing his bike (they hadn't, and they called the police).
I know I can't keep up this level of input and the problem is Dad just asks for more and more, is incapable of seeing how much he depends on me and that I might be exhausted. I know I will only get my life back when he goes into care and I no longer feel guilty for thinking that will be a good thing. I am going to visit a solicitor next week to discuss funding for a care home. Then there'll be my brother....The only way I cope now is by seeing myself as a kind of civil servant, doing my best to manage a difficult situation with the resources available.

Really sorry she's had a downturn CMOT. Hope the new meds make a difference. That's lovely getting DS to decorate one for her, nice for both of them. Christmas does seem to be looming somewhat doesn't it, I braved Home Bargains to get some stocking bits today.

Denial is a right bugger with Dementia. It seems to affect both the person with the diagnosis and wider family. My Brother certainly was in it for a long time. Combined with physical absence for years and a need to control I guess it was never going to end well.

We got on badly as children so seem to have reverted to that. I just hopes he does actually come at Christmas or Mum will be with the Carer as we have plans with DH's family for the first time since 1998. The rest have always been with Mum as she is on her own.

Maybe having your Mother over Christmas will open your Brother's eyes Needmoresleep ....

Bob. If it weren't so sad it would be funny.

I think the best way is often to see yourself in some form of professional advocate role. You are negotiating for them through a complex system to get the best support.

It clearly cant go on, and the burden on you is huge. It will be very sad for your dad to end up somewhere where he is not allowed out because he is not safe. However that is how it is. If you find the right setting he may find freedom. It must be really stressful to be confused and lost and getting into rows with people, etc. I am trying to imagine what might have happened in Poundland...

Hi all, I wonder how kalms is getting on.
I agree that a good visit does wonders for morale and it is good to hear about them. I had a good visit with Mum yesterday. She didn't know me but she didn't keep complaining. My sister is on her cruise starting today so I will have to try and fit in more visits.
Your poor Dad Bob, must be very frightening for him.
Hope your visit to your Mum goes well Wynken.

Bob I think at some point your brain goes into protect mode as to keep going as you are and for things to get worse is completely unpalatable . I think as has happened with Needmoresleep's Mum, he'll be a lot happier long term in the right care environment.

I was going to say the same as Needmoresleep , an advocate. It may be that you could potentially benefit from access to a Carer's Advocate to help you navigate as with their differing requirements that is a lot to negotiate your way through.

Just to give you hope I realised today that I felt happy. DD said yesterday that our lives felt normal again which was a huge relief to hear. There were times in the last few months when I couldn't imagine feeling happy again. Hang in there, you'll come through this.

Pudcat, glad it went well yesterday . Hope things aren't too stressful whilst your sister is away.

Thanks everyone. We will all ge through this one way or another.

Bless you Bob, you really have so much to cope with.

My dad got a lot of help from their local carers centre, which my aunt recommended as she got help from them in getting my cousin (who is severely learning disabled) into suitable residential care. Def worth trying yours.

Hope everyone is OK

Hope everyone is ok. Thinking about you all. Just wondering how to explain dementia to our 7 year old. Would like to tell him straight facts but dont want him to hurt his grandads feelings. He is one of those kids who will ask lots of questions, no tact.

My ds is 7 too. I've explained that for some older people their brains get ill, and that makes grandma say odd things, and do things that aren't very nice. But we need to look after her, and that means not questioning her and trying to help her.

Despite ds being a questioner, this seems to work well, and before he sees her we always have a chat about not correcting her if she's wrong, remembering she will use wrong names etc

I think CMOT's approach sounds a good one Kalms.

How is everyone doing ?

Went for coffee with Mum last week which went well. She is much better than when I last saw her in July. She admits she has big gaps in her memory, doesn't remember me visiting the last time I did with the DC's or the first CH she was in for 2 days. But now she's not trying to cover up it's easier for both of us.

I am impressed with how hard she is trying to do things herself, she's being pretty impressive. Met her Carer fleetingly who seemed nice but she has a new one now. She seems fairly resigned to the fact she'll be on her own for Christmas if my Brother fails yet again to come back so has a Carer booked.

Called her this morning and she feels she can't leave the house whilst this Carer here or have me round so we're provisionally meeting in 2 weeks time again. I think there is a level of paranoia still at play. She said one had walked off with an envelope of money but was very matter of fact about it. Who knows if her suspicions about this Carer are founded, I guess it can't be ruled out.

She is however fairly happy with her situation which is excellent. Apparently it feels a bit strange but I guess it would do for now. Galantamine has worked extremely well on her. She even ask about the DC's now which she never used to.

HI everyone. Glad the visit with your mum went quite well WBN. Just hope it can carry on like that and you stay strong. Remember the ghastly things she said about you and don't get drawn back into over involvement. But I'm sure you are wary of all that.
I'm still reeling from my last few days. Visit to concert last Wednesday was roughly a success. Had to fetch dad, have meeting with brother's support worker+ bro re a period of rehab in sheltered housing. quite disappointed to see that bro was making up all sorts of excuses not to go for it. Hard to see how he'll ever live independently if he doesn't start making an effort.
At concert hall dad was his usual confused, slightly irascible but generally sociable self. His niece was over from the States, probably one of the least judgemental persons I know. She loved seeing him and the next day, very wonderfully, took him all the way home on the train so I had most of the day off.
By Saturday, I was receiving calls and mails from the letting agents who manage his student flat re a flood. Water cut off, downstairs neighbours poised to sue, students needing "resettling" (the costs could be huge if you don't take action now, said the email, nearly gleefully). And another mail from dad's neighbour, saying his bike had been stolen and he wants another one. i just burst into tears. Then took the day off work on Monday, and trundled off to Dad's town to sort all this out...

Awful.

How did the support worker respond to your brother's reluctance/inertia?

She's quite professional so did not give that much away but said she thought he stood to potentially benefit quite a bit and should give it some serious consideration.
NMS the water saga continues at Dad's student flat (call from tenant today saying how come the water's not back on, I was told it was back on yesterday pm). Can I maybe pm you re this, I know you have expertise in this area? Thanks.

How come an agent 'managing' a flat is not sorting it out. They should know good local tradesmen. Assume it is a plumbing job, unless it is roof damage following recent storms.

Given it is a flat the first step, once you have found a reputable plumber is to identify whether flood is as a result of pipework within flat or in common parts. (Roof should be common parts as would a water tank in roof) If there is someone who manages the building you should have an early word with them. They may know a good tradesman but more importantly they need to alert the insurers as damage to other flats should be covered by buildings insurance.

None of this is about dementia, other than the real stress of taking on someone else's affairs. Tbh whilst buying rental property may have been a sensible financial move in your dad's early retirement, you managing a rental property miles away when you have so much else on your plate sounds more trouble than it is worth. Finding the extra energy to put it on the market will also be difficult. However it is a sellers market so might be worth considering.

You should also contact you own insurers early, if you have insurance. They may want things done their way. They may also be able to give some advice.

Do PM.

Bob that sounds horrendous

Did the Support Worker give you an idea as to when she'd be in a position to make a decision ?

Needmoresleep knows far more about rental than me but the Agent sounds rubbish. Is the Managing bit about sorting tenants and lease etc rather than property maintenance ? It doesn't help now but you can get insurance to deal with plumbing and electrical problems, locks etc which might be the way forward for the future if you keep it. Really sorry you've got all this on your plate.

Oh dear Bob. it never stops does it.

Mum seems to be tolerating the latest medication change better and is eating. Lovely nurse at the dementia clinic asked dad if I'd be able to take mum to her next appt and booked the latest possible slot knowing it would be better for me, which I really appreciated someone remembering.

Just had a phone call from my great aunts carer to say she'd had two falls in a week and was very poorly. She's 92, lives nowhere near me (though near Needmoresleeps mum I think) or my parents and for rather complicated reasons I've only met her 4 times and didn't even know she existed till 10 years ago. Dithering as to what to do tbh

Spoke too soon about mum. Shes back to vomiting again

Great Aunt is doing well now, but reading between the lines of what the staff nurse told me (and that she was keen to ask if I could be called day or night) that she is terminally ill. GA is very, very private and in spite of talking to dad last week shes said nothing about it. Nothing I can really do though!

Oh no CMOT, I am sorry . How difficult for you all.