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

Bloody hell Bob, so sorry to hear your latest news about your brother. I don't know what to say about your Dad's attitude, only I think that the stigma attached to mental illness is still significant and would only have been worse in your Dad's day - IYSWIM. DS is autistic spectrum and his father cannot bear to acknowledge this. Admittedly, ex-H is a giant arse - but I do think it is still difficult for some people (and particularly men) to get their heads around mental illness.

I imagine you probably want to run for the hills right now. I frequently do. Big hugs to you. Keep posting.

HI PBB Yes it's a huge stigma issue Dad grew up in the US in the 40s and 50s. He once, very shame facedly admitted to me he had had a "breakdown" in his 20s (in the US) and had thrown himself into his studies as a therapy (the point being, so could my brother). He took great care to keep it a secret. He brought that attitude to my brother's ptoblems, with disastrous results. The narcissistic wound of having a child with "something wrong" is just too much for some men. And they call us the weaker sex!

One of the real difficulties, and one of the odd silver linings, of having to care for you parents is that it forces you to come to terms with and reevaluate aspects of your own childhood. These things take time to process. Somewhere out there is an understanding that parents are imperfect, siblings are damaged and that there are also things that are admirable. My own mother was never maternal, and can be described as stubborn, but is an admirably feisty old lady. This is what keeps her going.

It sounds positive. SS working together in a constructive way. Your brother getting the care he needs. Allow yourself some anger for the way your father's own weaknesses have impacted on your brother's life. Actually allow yourself more than a little anger. It really is such a waste. But hopefully there will now be scope for both to receive the support they need and some of the awful burden to be lifted from you.

Good luck next week.

Welcome to Englishrose and sorry you too are in the Dementia club (if you see what I mean). My children don't want to see Mum after she said about me poisoning cakes and I have no intention of making them.

Thanks for counselling info Bob. I'm really sorry to hear about what's going on, that must be very difficult to come to terms with. I'm really glad you ar having counselling and hope it will help you process the emotions you must be feeling right now. It does sound positivethat both care teams will be working together and I really hope they can come up with care plans that you feel will work going forwards. It will probably help if yo are clear in your mind as to what your involvement can be. It is OK to say no you can't and they will understand as take things like your work and children into account.

PostBellum you sound like you have a huge amount to deal with, I'm so sorry. It sounds like you could do with not going or dealing with any of it for a few weeks and concentrating on yourself and the DC's. I do know how difficult that is to do in practice though.

Things have been moving on here . SS did a further capacity assessment yesterday and sounds fom what my Brother has said she has passed and everyone happy she has capacity so can have live Carers as she wants. Brother sent me copy of the Independent Assessment and it appears she thinks I encouraged her to complain about the daily Carers, it was in my interests for the original assessment to go badly as she believes I won't he to sell her house so I can have some of the money nd everything tha has happened is as I'm after her money. Or something along those lines and my Brother largely agrees with these comments.

Consequently I am resigning as Attorney (actually new one being done is better way OPG said). I've asked Mum via Brother to amend her Will to remove me as Beneficiary and Executor. Also sent a letter to her solicitor advising this and stating in the unlikely event of her death before she has done this that I will not be accepting any of the money.

I did advise my Brother that I am unable to be involved in her future care. He has still been paying me wages and asked if I want to carry on doing things like getting Meds etc or do I wish to stop completely and he will get someone else to do it. Obviously I'll be stopping completely. SS advised me they have concerns about the care agency he has chosen so will be supporting him through arranging the Carers. Apparently he isn't well enoug to fly currently so still not actually back but hopes to be later this week. Mum is apparently gutted about me and asking him questions he is unable to answer.

Crikey Wynken, so much going on with you too. You didn't say how you feel about all of it. Do you feel relieved to be stepping back in the legal sense and practical sense or do you feel sad?

I am having a nightmare. My house purchase has fallen through, so I am now scrabbling around to find somewhere to rent. I can't sleep for worrying about it all.

Did my weekly slot with my parents yesterday and that was exhausting too. Dad's dementia has got worse & he cannot stay still for more than two minutes, unless he is eating. He is constantly getting up, wandering into another room, stands there for a bit, sits down for a bit, then wanders off again. He has to be accompanied everywhere because he is such a fall risk and the house is on a million different levels. He also keeps wanting to go to the loo, which he can't do on his own, as he just wees down the front of his trousers. He doesn't actually need to go to the loo, as he has a pad on and is catheterised 4 times a day, but he keeps on trying.

To give Mum a rest in the afternoon, I took him for a walk & he got very stroppy and refused to use his sticks and just wanted to lean on me. He weighs over 13 stone, so it was a slow tiring walk. I then took him out for a drive & it was a nightmare. He kept trying to put on the handbrake and change gear - WHILE I WAS DRIVING!!!!!! Very stressful. However, managed to keep him occupied so Mum could sleep for an hour & a half. Felt guilty leaving, as the carer wasn't coming in until 8pm and I knew that she'd just be trailing around the house after him for two hours, but I had to get back to sort all the DCs stuff out for Monday.

PostBellum you sound like it's coming at you all ways right now, how incredibly stressful (understatement.) I know you feel guilt about not beng there for your Mum bu it sounds like you need to step back for a little bit and get your situation. If you go under then that's no good for anyone. I know this is very easy say and very hard to do.

I feel very sad about the situation with my Mum and Brother, it is like a bereavement . I've seen the latest SS capacity assessment today and although she has capacity it is evident she has dementia related problems.

I'm also going to have to get used to her living round the corner and not seeing her. There is relief in the mix as well somewhere . I'm just very lucky to have my Dad and now we've got into the open the things Mum told me about him, we've become much closer. He'll be down in a couple of weeks - at this rate the same time my Brother gets back. Then we'll be in the strange position of one half the family in one house and the other round the corner. Very sad for everyone really but such is life. What has been very heartening is the support of friends.

Hopefully with time you'll be able to go and see your mum on a social basis Wynken, maybe getting someone to go with you.

Sounds like a nightmare PostBellum. I don't let mum in the front of the car anymore as she fiddles. And the back doors have the child locks on so she doesn't dent other cars.

Mine are okish. But the good news is that dad has found someone to tidy the garden (million plants, growing everwhere) and who will come 2 hours a week. Mum has declared everyone at the day centre 'not right in the head' and refused to go last week, but the bus is coming for her this week, so it might help

I shoukdn't laugh CMOT but Mum was just like that with the CH , or nut house as she called it when last saw her. Good news about the gardener.

Maybe in time I'll see her but she totally cut contact with my Aunt whn told my Aunt had cancer. She said when I last saw her she didn't want to see me till she was home and then I would have some 'hard questions to answer'. It will either be I get a summons or she'll continue having nothing to do with me. I have no intention of seeing her and having the discussion she might want till I've had some counselling. I can cope with her thinking badly of me but the things my Brother has said are very hurtful.

Oh, dad and I had a good laugh about it. Its weird, she has absolutely no insight at all and also commented on how some of them had to be helped around. She of course obviously does not walk with two crutches all the time, and use a wheelchair for any distance outside the house

I think some counselling would be a very good idea to get past all the things you have had from your mum and brother. Have you got anything lined up?

Amazing how little insight some people have. I think I am on the waiting list for counselling but need to check.

I've had an interesting conversation with a friend I've known for 14 years . She's just described Mum as beng a toxic influence on my life, said for years she has watched me get off the phone from her really stressed. Interesting to see things from someone else's eyes.

That is interesting Wynken. Sounds like things have been toxic in your family for a long time.

My mum fell out of bed this morning, and has been carted off to A&E as dad couldn't get her off the floor and one leg was swelling up. So, waiting to call there and see what the story is, then I may have to traipse down. The fun never stops eh?

Poor you. You must dread the phone ringing.

sounds like evereveryone is having a tough time

things are ticking along here, we are in the middle of sorting out the power of attorney and fil's tests results came back clear so it looks like the cancer hasn't returned so now we are trying to figure out what's going on.

he hates the care home, we have the same conversation every time apparently all the other residents are "gone in the head" and if he stays there much longer he will go dolaly like them, the urge to yell that he is exactly like them is getting harder and harder to resist,

he claims the staff are abusive to the other residents but not him, there are no signs that they are and the residents all appear happy and well cared for, I've heard them raise their voices at the residents (in a firm way rather than cross or shouting) a few times but only when needed, so we are fairly certain it's not true but him saying it has planted a tiny seed of doubt which is causing stress for us all, we are happy with the home in all ways but he is very convincing and I'd hate to just ignore him if it's actually true. he is not distressed and actually is quite chatty with the staff so not showing any signs of anxiety or fear.

he moans about the food, the people, the traffic, the weather now that it's to cold to sit in the garden, that there's nothing to do despite the fact the ch has activities every afternoon (he refuses to join in), we've taken books in (he doesn't read), jigsaws ("never done one in my life not starting now"), the ch said he can have part of the garden to plant what he wants ("I'm not here to work"), there are 2 lounges with tv's and he has his own in his room (there's nothing to watch), he gets the paper everyday ("I like the crossword the rest is chip paper") and my all time favourite.......

him- "I'm fed up of sitting here doing nothing"
me/dp - "let's go for a drive/out for lunch etc"
him - "I don't want to go out"
me/dp - "It will be nice to get out for a bit"
him - "no it won't and anyway I'm too busy, ive got stuff to do"

arghhhhhhhh give me strength

oh and sil and all the grown up grandchildren have decided not to visit him because they don't want to hear him moaning all the time and want to remember the man he was, I was so gobsmacked when sil announced this that I just stared at her for 10 mins then turned around and walked out of the room, I haven't spoken to her since because I don't think I have any idea what to say.

Smiling, if your gut is telling you the home is good & that the carers are good, then don't let your Dad make you doubt that.

Stunned at SIL and grown up grandchildren. I just don't get it.

Dad had another fall yesterday. Fortunately on to one of the carpeted floors and there was a carer there at the time, but still necessitated an ambulance call out to get him upright again. Mum and the carer couldn't get him up. Mum then tried to keep him in bed when the carer left, while she cooked supper, as it is impossible to supervise him and cook at the same time & he climbed over the bed rails. How he didn't fall again doing it, I don't know. This scenario is not going to end well.

It doesn't sound good Postbellum. If he won't stay in bed, then he is a real risk to himself - and to your mum as she'll be trying to lift him.

I too am stunned at Smilings family.

Looks like my mum has had a stroke. Possibly a few over the last few days as yesterday she was complaining she couldn't see out of one eye. Now her speech (such as it is) is slurred and shes drifting in and out and weak on one side. On the up side, I managed to talk to someone in A&E very quickly (an actual doctor and everything), and she's being admitted after her CT is done. So at least I don't need to do anything right now.

Oh dear CMOT, not good that it sounds as though your Mum has had a stroke. Has she already had one, or is this her first (or series of firsts)?

Sorry Wynken, I realised I asked you a question and then didn't respond to your answer. I am sorry that you are so sad about being cut off from your Mum. I really hope that as things settle down you'll be able to see her again and she may want to see you too. I can't believe how tough this whole dementia thing is for everyone around the person with the dementia. It casts such a wide net.

No, she hasn't had one before, and there was no signs of any on her recent CT.

I just felt like we were settling down, and things were OK (and I have a mad work schedule till christmas and no annual leave left), and some new problem turns up.

Good that weren't any on her recent CT scan but not good news that she has had one. I hope that it isn't too big and hasn't affected too many areas of her brain.

Dad's stroke was a series of vascular bleeds and they just seem to hack out bits of his brain. He lost communication, continence, swallowing but only had minor left sided weakness. He has recovered some strength (clearly enough to be climbing over the side of beds) but has never regained much speech or continence.

Your Mum will probably be in hospital for at least two weeks, maybe longer depending on the home situation (i.e. can she be safely sent home). Will your Dad be ok on his own while she is in hospital?

One reason for strokes starting now, may be that she started refusing her insulin 2 months ago, and hasn't had any since. And as dad has been desperate to get her eating anything, she's had a lot of sugary stuff - so her blood sugar would be very high.

Dad'll be fine on his own. But if mum needed anything more than he's been providing she can't go home. He can't help her up from a chair or anything, and though they have a downstairs loo and shower with seat she won't use that shower for her own reasons.

It may take a few days to know the full extent of the stroke CMOT. At first we didn't think Dad was too bad, but it seems to take a few days for the full effects to make themselves known.

Having a constantly high blood sugar level won't be doing her any good at all, she must feel so unwell - but they may be able to regulate that in hospital.

The stroke assessment team will do a full assessment of her and the occupational health guys may even go out & look at her home before they draw up the plan for her to be discharged. Initially, you get quite high levels of support from the stroke outreach team but that disappears after 6 weeks - so worth bearing all of that in mind, whenever they are planning her discharge.

Oh dear I am sorry CMOT. I'm glad she's in good hands. As PostBellum said she must be feeling dreadful with her blood sugar high. It's really important you look after yourself the next few days, please take as much care of yourself as you can.

PostBellum, sorry about your Dad. It does sound as if it had got to the stage where your Mum needs more support to care for him, but I know she's reluctant to accept that. Is there anyone like a GP she listens to who could sit her down and get her to listen?

Smiling I agree about gut instinct . It won me over with the one Mum's in and my Brother even admitted to DH today that he is impressed with it. I'm sort about your SIL and co, can see how hard it must be to speak to her. Sadly I have heard so many stories now that nothing much surprises me anymore.

Well, the good news is that theres no sign on the CT of a stroke. So she got moved again to the geratology ward while they try and work out what is going on. They seem really nice in comparison to other wards when I spoke to them.
Dad spoke to the dementia research nurse who is on the same floor, and she will be going to see mum, so she may be able to give more of an opinion on how she is 'for her'

Will see what they say in the morning and decide if I need to traipse down.

Could possibly be the lack of insulin CMOT. My mum is a full blown T1 diabetic & she'd be dead without insulin within a very short period of time.

That sounds more positive CMOT. I hope today brings some answers for you and that you are bearing up as well as you can in the circumstances.

Mum's definitely going home tomorrow, her cleaner is picking her up I've been advised. Chased my counselling referral yesterday.