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

Brother has informed me that he won't be going to the meeting but his solicitor will be. That there will need to be a formal assessment of her wishes before which his solicitor will be arranging through SS. A shame as I think it would be very helpful for him to have the opportunity to engage with all the professionals in her care so far.

Quite how there can be a formal assessment of someone's wishes when they don't have capacity amd have been deemed unable (by SS Mental Health Act Team) to have an advocate because of this, I don't personally understand as it goes against what i understood capacity to be but he says I am too close to the situation. I'm sure he knows what he's doing and good to see he's leaving no stone unturned. This way there can be no doubt that the correct legal procedure has been followed whatever the outcome.

I don't know what to say Wynken, I really don't. Like you, I understood that if someone hadn't got capacity, their wishes couldn't be taken into account (I guess unless in a 'these two places are suitable for you, do you like a or b better' sort of way).

My brother was an arse to dad while I was away - they were (again) spending a few days with sils parents v locally to mum and dad and popped in for 45 min. Dad had sorted out a basket of toys for brothers little boy. Brother told dad he 'wouldn't be taking that rubbish home'. It hurts dad so much that the only thing he can do for his grandchildren is dismissed so nastily - why wouldn't my brother just accept with kind words and shove it in a bin at the nearest services if he doesn't want them?

Oh CMOT, that is horrible of your Brother It must be very hard for you to have to see this.

I'll try and get the name of the firm of Solicitors my Brother is using. They are obviously very good and know their stuff inside out to be able to arrange an independent assessment of someone's wishes when they don't have capacity and to be able to put this for consideration before a case conference panel. Might be useful to keep a note in case anyone else has difficulties with SS in the future.

It's especially impressive that he has arranged this from another continent when he hasn't seen her for 4.5 years. I know she's incredibly grateful for his input, she was telling myself and the children how absolutely brilliant and marvellous he is being when we went that last time to see her, repeated it a number of times she is so grateful.

I can be confident that with his solicitor on board and SS Mental Health Act Team involved that the decision reached will be very well thought out and absolutely in her Best Interests. It's comforting to know as if I lost capacity I would want everything to be done absolutely to the letter of the law, it's such a big thing having your decisions made for you and good to know that legislation is in place that has to be adhered to. Wish I fully understood it but no doubt it will be fully explained at the meeting.

Just checking in after three weeks away to wish everyone well. Poor CMOT's dad.

I assume that no professional is going to suggest that WBNs mum is brought home, and that there are only a limited number of suitable facilities. Sitting on the sidelines and letting the process work its way through seems to be the best place to be. Your mum is safe and appears to be happy. My own guess is that if she seriously expected to go home and have to fend for herself she would, if lucid, be quite panicked.

How are things with you NeedMoreSleep? Did you have a fab holiday?

I did. It has been a fantastic summer weather-wise and after a dismal winter it was great to rediscover my family and to some extent myself.

Though things are settled and my mother is settled, happy and well cared for, the dementia does not go away. I am finding this hard to cope with. I came home to phone messages, essentially accusing me of stealing by depriving her of her cheque book. (All the professional advice from both bank and carers is that she should not not have one.) Then I have a lovely phone conversation today where she was bright and alert and completely unaware of the messages (and has clearly found the money she presumably mislaid.) Trouble is that she wont remember this conversation, in the same way as she has forgotten my last visit and the quite nasty things she said.

There is a real temptation to simply manage things in the background to ensure she is well looked after but stay away. There is a medical appointment next week but that ought to be the last for a while. Without memory there is no context for her mood. So, say, if she cant find something and decides it is my fault I could spend half a day in the car to face a barrage of abuse. Or she could be delighted to see me. Indeed because she forgets I am coming, she tends to get flustered by my turning up and so there is a danger of starting off on the wrong foot.

However with her world closing in as both she and her elderly friends are less able to maintain a social life, I feel I should keep visiting. This is the point at which she needs family. But then she forgets I came which makes it all feel a bit pointless, and it was my parents decision to move away when they retired. There is also the complication that she likes her lunch where she is and so refuses to miss it, meaning I can't really take her out anywhere.

Nothing compared with what others are going through, but something I need to work out. It would be much easier if she could remember my visits and look forward to them. At times I think she feels abandoned and alone, when clearly this is not the case.

Thoughts and ideas welcome. Whilst typing it strikes me I might take flowers each time. She could then see them and know someone brought them.

Hello have just joined this thread. CMOT The post about your brother's actions made me cry. We can still treat out parents with love and respect even if they cannot remember us. All forms of dementia must be the saddest disease out. I cry almost every time I visit my Mum. I know she is well looked, I know that I can no longer look after her, but I still feel guilty.

Hello there.
CMOT so sorry to hear your brother was so unkind to your Dad. You do wonder why he couldn't have just said "thank you".
Wynken - glad you have a date for the meeting about your Mum. Will be very interested to hear how it goes & understand the legal aspect.
Needs - good idea on flowers. Maybe you could even tie a tag to them, so that she knows they were from you.
Hello Pudcat - welcome to the thread where no one really wants to be. Lots of great support here though.

Update on my Dad is that he is on antibiotics again. I don't think he will ever come off them again to be honest. We're not even entirely sure what infection he has, but he was spiking a temperature again, so back on an increased dose.

He seems more alert but more agitated. Cannot sit still for more than 5 minutes, unless he is sleeping. He gets up, shuffles a few steps, you ask him where he is going and he doesn't know, then he shuffles back again & you say "come on Dad, sit down with us", he sits down and then is off again. Press repeat over again for the rest of the day & that is what he does. He has lost all social graces, so farts loudly, burps loudly, coughs with his mouth open, won't say hello or goodbye if he doesn't want to and has started to become uncooperative sometimes too. For a man who was very fastidious and a stickler for manners & politeness all his life - it is horrible to see him like this. The worst thing, is to know how appalled he would be by himself. I am just thankful, his awareness is so limited now.

The carers who come in are great and seem to be able to cope not only with Dad but with my eccentric mother as well. She is so rude to them sometimes that I can't help thinking they'll tell her to stuff it, but they don't seem to. I guess they've seen it all before.

Mum was really bad today. She was in bed because she was very aggressive with everyone. She was paranoid saying everyone was watching her and she couldn't trust anyone. She accused the manageress of kicking her and was horrible to her. The food is poisoned so she is refusing to eat and drink again. They are checking for a UTI and they were giving some morphine as I left. Had a good weep before I started off home and prayed to Dad to come and get her. He died in 1953 and Mum has never remarried or had another partner. Hope others have had better days than this.

hello everyone, haven't been around for awhile as have been enjoying time with the dsc.

CMOT your brothers actions constantly astound me but you seem to handle it with such grace, you should be very proud of yourself.

fil has settled into the home although visits follow the same pattern and it's getting quite wearing now.....

we arrive and find him sat in the garden...... he tells us he hates it and if he stays much longer he's going to go insane...... we explain it's for his own safety....... he accuses us of dumping him and tells us to leave him there to rot...... he calms down and tells us that he's been playing cards then tells us it's getting late and we should get home.

the whole visit last 40 mins and I leave feeling absolutely drained and dp looks like he's going to cry.

he also calls mil every evening tell her that the home say he can go home when she says he can and Its her fault he's there which is upsetting her.

I feel deeply sorry for him as he still has enough recollection to know he wants to be at home, I wish the bloody dementia would speed up and take over, I know that will bring new issues but at least he won't be aware of what's happening to him

Pudcat - sorry to hear of your awful visit. My granny was like this & it was very upsetting. She used to tell everyone Dad was chaining her to the bed rails & insisted that the nursing staff were stealing her pants. It is very distressing.
Smiling - sad about your FIL too. The only thing I can say of any consolation is that the dementia / alzheimers will addle his brain more and then he won't remember that he wants to go home anymore. At least you know he is safe and being well looked after. Small consolations, I know.

he has vascular dementia and lately has been having more visible mini strokes, I know it's horrible and I'd never admit it in rl but in many ways I wish he would have one massive stroke.

the home is lovely and the staff are fantastic, I think we had all expected him being in a home would lessen the stress but it hasn't its just changed the things were stressed about

Is your MIL getting a break or is she feeling guilty. Has she been able to pick up elements of the life she had before her husband became ill?

I understand your thinking. My dad died suddenly from a stroke and in his sleep four months after a brain tumour diagnosis. Just as he was starting to need a lot of help. Much better than the year prognosis with an increasingly poor quality of life. It means I have some lovely memories of our last conversation.

You might find fibs help. Something along the lines of the stay being temporary until 'he feels better' or whatever works for him. It worked for my mum in that she would not have been able to cope with the finality of leaving her home. As she has little sense of time she had no real idea how long she has been where she is. And six months in and she has no wish to go 'home' indeed does not always know where home is.

we tried the approach of saying it was temporary but he just wasn't settling because he didn't see the point in talking to people and making himself at home, he was also being violent to mil because he was getting worked up about when he was going home.

since we have been telling him it's permanent he has settled and made friends and the staff say it's only when we visit he talks about going home, he is also less aggressive towards mil when she visits, now it's just verbal and not physical.

mil has got a kitten to take her mind off of things, she feels guilty but understands that it wasn't safe for him to stay at home. she is completely isolated in the village though because her so called friend keeps spreading rumours about how she cared for fil and that she deliberately wound him up so he ended up in a home she completely avoids telling anything near the truth so people mil has known for 40 years are avoiding her.

I think the thing I'm finding hardest is that because mil is lonely dp is insisting on inviting her to everything we do, I love mil and get on great with her but I wish she wasn't always there iyswim..... I'm hoping now that dsc have gone back to their mum things might settle a bit.

is it normal to always feel like I'm the most selfish person in the world.

Oh dear why is this disease so horrible? I understanding the thinking behind one massive stroke. I just keep hoping for the early morning phone call to say that Mum has not woken up. I am suresmiling you are not selfish. Selfish people do not care, and do not visit.

just got in from work to an upset dp, fil saw the Dr today and there is a strong possibility that he's prostate cancer has returned

could things get any worse?

poor mil is beside herself with worry

Aw smiling - my dad has prostate cancer too. Unless your FIL is very unlucky, prostate is a relatively slow growing cancer. Dad has advanced cancer now & needs catheterising because the tumour prevents his bladder from draining properly. He also has a few metastases dotted around but in all honesty it is the least of our problems. His dementia is far more of an issue & the vascular bleeds / strokes have left him with so many issues that the cancer seems like a relatively minor problem.

I write these things out and read them back & wonder if they are reassuring at all. They sound brittle and bleak, but that is not how it is intended.

Smiling, I am no medical expert but is there any chance his cancer may have metastasised to the brain. Again small comfort but that could then explain the aggressive behaviour which might give your MiL comfort - and an answer to any accusations from neighbours or former friends.

This is what we wonder about Mum with her cancer. No one seems to think it is but when she had a brain scan in January there were tiny dead areas.

Cancer meant that my dad's behaviour was very odd. Luckily he did not undergo a real personality change, but would phone me 8 times in an hour (at work - not appreciated by a very un-empathetic boss) asking the same question and became very anxious. Again I seemed to be the only one who spotted a problem till he started losing his sight. Tumours in the brain can lead to strokes, a major one in my dads case but I assume minor bleeds as well.

I will suggest that dp asks the doctor about the chance of it being in the brain.

he has had prostate cancer twice and is on anti-cancer drugs but recently has been bleeding which is why the Dr was called, we will just have to wait for test results.

A belated welcome to Pudcat plus to everyone having a hard time and that's quite a few at the moment.

Mum has said she wishes she'd have a big stroke rather than these little ones. I can see how she would feel like that, guess I would in her position.

It's been a busy week with the DC back to school and DS starting a new school. My little baby left home with a fairly high voice, one day at Middke school and it seems to have started breaking as he came in with a low one.

Still feel in limbo with Mum until the meeting week after next. Seeing as she won't see me it feels a bit like she's dead having had so much contact before. I've finally got used to not panicking when the phone rings or i see an ambulance and feel we're having a more normal life. I suppose that is what it is like for the Invisibles, how the Dementia doesn't hugely impinge on their lives on a day to day basis.

The manager of the Flat CH assures me she is fine. When I rang she had gone up to the main house to read a paper which surprised me as I'd imagined she would rarely leave her flat. But she had said to me a few months ago she wanted more sense of Community so that's probably part if it. She even saw the hairdresser for the second time and has been on a trip. Her memory seems to have stabilised for now with the Galantamine and no more funny turns. What a difference a couple of months of regular Meds, proper hydration and nutrition make and how sad that didn't happen at home with all the huge effort everyone put in to try and make that happen.

Its great your mum is settling in so well Wynken, but obv sad that it couldnt happen at home.

My mum has had a bad week, and taken another overall downturn. Oddly, one of the things that has gone is that she no longer recognises a grater. Dad is finding things very hard atm and getting very angry about it all. Brother got the brunt of it a bit, which he deserves, but it doesn't really help long term.

I've persuaded him to give the day centre a try with her, and hopefully she'll get a try visit this week. God only knows if she'll accept it, but he needs a break and she needs some socialisation.

Woohooo! Mum went to the day centre today and liked it! And even better, as they are self funding, she can start 1 day a week from next week for a full day inc transport.
Am very happy for them both that this is happening

Excellent news CMOT . Let's crack open some . We need to make the most of good news.

Quite funny at GP today. Went for blood pressure med review. He stuck on the cuff, pressed start. I'm trying to think calm thoughts and he piped up 'so what's going on with your Mum then', took one look at my face and said 'oops, sorry !'