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

Hi smiling - sorry you find yourself here too.

No advice but am so sorry to hear what has happened to your FIL (and your poor MIL too). Dementia is such a cruel illness in so many ways. I hope you manage to find somewhere safe and acceptable for your FIL soon.

Oh Smiling, that sounds awful - it must be so painful for MIL. Has he been aggressive towards anyone else? If not, maybe he'll be able to be placed in a dementia unit after assessment.

Gosh smiling that sounds immensely painful and difficult for everyone involved. I really hope somewhere suitable is found for your FIL.

Needsmore Thank you for the advice, it's good to have an idea of what to expect from the assessment and so on. In terms of care for both parents- both short and long term- we are extremely grateful for the fact that our parents have money and can afford to pay for good quality care for the rest of their lives. We do not have POA at the moment but will be trying to get this in place ASAP as obviously mum is not expected to live for a particularly long time now that the decision has been taken to stop her chemo and we will need to be in a position to make decision on dad's behalf.

Thank you for your kind replies.

We've just had a best interest meeting and it has been decided that fil will not be returning home for his and mil's safety. It was an extremely hard and emotional meeting but we all feel it's for the best.

Fil is distraught at not going home and doesn't understand why he's not, he thinks mil is leaving him.

He will stay on the mental health ward until a placement has been found which is distressing for us all because although the staff are lovely they aren't set up for dementia patients and he is struggling to adapt to being in a different environment.

It sounds as if options are limited. But how very sad.

At times my mother's behaviour has been pretty awful but with a bit of distance I can accept that she must have been feeling pretty scared and vulnerable, and lacking the capacity to process these emotions properlly. The worst perhaps was quite a shocking level of anger towards my father when he was ill.

Hopefully once settled somewhere permanent he will feel calmer and a level of insight will reemerge.

Dementia is really cruel.

My dad is 80 and has dementia. His short term memory is about 3 mins. He's also incredibly anxious, demanding and is going blind. I moved back from London a few months ago to help look after him but I hate it. Every day is like Groundhog day and its reached the point where it's affecting my mental health. I used to have a career, friends, a life now I just feel ground down by the relentlessness and monotony of it all. :(

Welcome Scarletohello, I'm sorry you find yourself here. Caring is incredibly draining, do you get any respite care?

Tomorrow, I have to take mum for a CT scan. As she is having a run of not good days, this could be fun.

But in good news, the dermatology team have finally sorted it out for the hospital based community dentist to provide oral health care for dad - he has an autoimmune condition that causes massive, long lasting, mouth ulcers - after the hygenist at his dentist charged £90 for 15 minutes and didn't do what the specialist had asked.

Scarlet. That sounds tough. Have you read Hugh Mariotts 'Selfish Pigs Guide to Caring'. If not, get a copy as soon as possible. It describes the emotions people dont feel able to talk about which helps.

Worth reading also is 'Contented Dementia' by Oliver James. I was not convinced by the approach. However the chapter on when is the right time for a care home seemed useful. Struggling on your own may not be the best thing for either of you.

And a thought for Waterlego. By chance when my mother first had a fall I did some desk research on the cost of convalescent care by Googling local care homes and phoning them. The hospital discharged her early and unexpectedly at a point when we were only really picking up on her memory problem and had little understanding of the implications.

If money is not an issue it might be an idea to line up a Plan B in the form of a home who might take your dad at short notice for a temporary stay. This then gives you a bit of breathing space if you need it.

Where my mum went for 5 weeks was utterly luxurious and she was sufficiently confused to think she was in a hotel. It meant I could get on with practicle things like sorting more suitable permanent accommodation and trying to make sence of her finances, knowing she was safe, well fed and being entertained. It cost an arm and a leg but worth it.

Do the POA as soon as poss. Better done before a diagnosis, and it sounds as if your father is getting worse fast. (Though you might well find this is down to a UTI or similar.) In any event it takes about 3 months to come through. However much longer if you have to go through the courts. One thing you could do quickly is get forms from the bank which allow your parents to add you as a signatory to their bank accounts. Then you can at least access some of their money should both be incacitated.

We got the priest to be witness to the POA. My mother was very nervous of signing a POA but also clearly rattled by her fall. She trusted him and he was able to reassure her that this was something she needed to do.

For me it all kicked off around Christmas. There was a lot to learn in a short time.

Welcome to Smiling and Scarlet though I am very sorry about the circumstances that have led you both here.

I echo Needsmoresleep on the Selfish Pig book, it really helped me. I'm only half way through Contented Dementia and have given up for now.

Smiling, this all sounds incredibly difficult. I really hope something suitable is found very very quickly. It must be very hard on you all right now .

Scarlet, I'm so sorry you're feeling down right now. One thing I have learned is it is vital to protect your Mental Health in all this. Have you had a Carer's Assessment at all? Your entitled to one. No idea if they are actually helpful in reality but they are in theory acknowledgment that your needs and health matter too. Does your Dad have a Social Worker ? Sorry to fire questions at you but I think whence this point you need some professional support if you're not getting it. It's hard enough becoming a Carer but you've just under gone massive life changes in order to be so and it's a hell of a lot to do so.

One thing the Memory Clinic stressed to Mum was getting the POA sorted which thankfully she agreed to. We messed up though and only did the financial one and may now not be able to do the Health and Welfare one, depending whether or not the Psychiatrist finds she has Mental Capacity tomorrow.

CMOT, I hope everything goes ok with the scan. Good news on the community dentist.

I have no news about Mum to share regarding her care arrangements as haven't heard anything from my Brother regarding this so no idea what is happening. I did what he said and stopped the daily phone calls, assume he's doing them. I started a thread on the AZ board regarding Live in Care and emailed it to him as it had son good advice and have asked him to tell her what time I'm picking her up tomorrow. DH and I don't feel any better as we know we're still in the situation where the phone could ring any minute and it all kick off again.

Hi Scarlet - so sorry to hear about your Dad & your own situation. You are an amazing person to look after him this way & I can so understand how it must get you down.

Have you marshalled every speck of help you can get via your / your Dad's GP? Have you thought about other options - like carers coming in or the possibility of a home for your Dad?

Hi scarlet, also sending my best wishes and support, my dad too has dementia.i don t live with him but am his main support, he is a widower. I can t add much to what the others have said, but remember you are important too and have needs. I have been having counselling for the last year to help me cope. And to echo postbellum, ask for help and if it isn t really going to happen in your dad s home, there is no shame in accepting you can t carry on and your dad needs to be cared for in a specialised residential setting.

Update. Brother has found an Agency . Each Carer comes for two weeks and does 22 hours a day. I won't be covering the 2 hours off, she'll press pendant and call will go through to Carer.

He's arranging for spare room to be cleared, though I said I'll look through it first on Monday. Also he's sorting a new bed etc and some furniture in house to be moved. Says to keep not phoning, recover, then maybe ring a couple of times a week if I want and pop in for a quick cuppa every so often. The lady at Agency said it is very common for people in my situation to totally burn out so he is taking that on board. Any problems he will be first point of call.

Accepts this might not work but that at least he'll have tried and at that point she'll have to go to a home. I feel ok about it all and think he does get now how bad things had been. Memory Clinic tomorrow.

Well done, good to hear brother has been throwing himself into it. I hope this works well and gives you some much deserved space. Needless to say, expect your mum may be getting some complaints in about strangers in her home, but stand firm. With a bit of luck she ll get used to it and be reassured by the presence of another person.

Well the plan is Bob she will be complaining to him not me! He'll just say well Mum you know what the alternative is . I'd flap and run round like a headless chicken. So I just have to practice 'that's a shame, Speak to DB about it' over and over.

That s even better. He really is stepping up to the plate!

Thanks all for the kind replies. I will check out the Selfish Pig book recommendation too! Tbh I feel quite selfish as I'm not doing this out of the goodness of my own heart, more out of necessity. The hardest thing I think is the isolation and seeing friends my own age (40s) who are having a life and I'm giving up probably my last best years to look after a man who doesn't even know I'm here half the time. Just feels so pointless.

Scarlet, you don't have to do this you know. It might seem there's no other way but there will be. Do you want to tell us a bit about your circumstances?

Long story. Depressing. Used to live in London, had a good job working for a charity. When last Gvt got in, funding massively cut so got made redundant. Went travelling in India for 4 months. Lived in London with guy I was seeing. That ended so had to move back to city where I grew up. My mum used to look after my dad but she had a severe stroke, is paralysed, can't speak or swallow food so is now in a care home. I'm the youngest of 3 daughters and they asked me to stay at home to look after my dad as we were trying to cope with carers coming in but he was getting more vulnerable. Don't have a good relationship with my dad, he was a bulky and v authoritarian when I was growing up which is part of the problem as to why I find it so hard to look after him. He treated my mum as a skivvy and although I know he genuinely needs help now I just resent it so much as I feel he treats me just like he treated my mum. Some days I feel so depressed I just drink myself into oblivion. I feel I am wasting my life. And sometimes I get so angry and irritated at him when he's asked me the same question 5 times. I am not the right person to be doing this. 2 weekends a month my sisters come up so I can get away.

Sorry for the self pitying rant...

I'm very sorry, that sounds very tough. It sounds to me in the outside that this arrangement is not working and for your sanity you need to say you have tried but it isn't working out .

Yes your Dad does need help but you do not have to be the person to do it. If Carers have been tried and not worked out then unless either of your two sisters want to do it, it is probably to for a Care Home. Reading between the lines and I could be way off the mark, the pressure is on you to stop the House being sold. It is ok to say you aren't doing it anymore, I just have. The rates of depression in Carers of people with Dementia are much higher than in Carers of people with other conditions. No one can be forced to care for someone, you are able to say enough is enough and take your life back - however impossible it may seem at the moment.

Are you having help from your GP?

Wynken that's v kind and v astute, yes I am mainly doing it to preserve the inheritance. My mums care home fees are 3k a month and my dads would be the same if not more. Although my parents were not wealthy they are from that generation that scrimped and saved and so there is, at the moment money in the house and in savings to pay for care.

I thought about going to the gp for help for me but I think I'm just in denial about it all.

Hi scarlet I agree with wynken and it seems you need to see a way out at some point. A difficult thing with dementia is there is often no real prognosis so your ability to make plans for yourself and know when you ll get your life back just isn t there. That s why when people say " they looked after you when you were young, now it s your turn to look after them" iit s so wide off the mark.
Maybe it s time for a proper talk with your sisters. They can t realistically expect you to carry all of this. Maybe you need some kind of equitable rota ( but hard to think how this would work) or for your dad to go into residential care now.

Thing is though Scarlet you are protecting your sisters' inheritance at the expense of your mental and physical health. There is no shame in saying enough is enough, I can't do it. As Bob said, you could have years of this.

I think the denial part comes and goes. When it dies down about do you feel you could speak to your GP?

Memory Clinic today. Back on Med as felt not to have nothing to do with Mum's episodes. Mum doesn't realise she isn't taking it. Care Agency expressed concern she will not take Meds in front of them. Quite concerning as her Galantamine needs to be taken with food roughly same time of day, Memory Clinic were quite clear on that.

Psychiatrist found her not to have Capacity to make decisions about where she lives and will pass this to her SW. Brother and I at logger heads about best plan. He wants to try Home Care but I feel she doesn't have insight into her decision to have a live in Carer as she can't fully appreciate the full implications and I have issues re training and safeguarding. He also urged us to think long term as he said it is very unpredictable, could be 1 month or 10 years. So I also need to consider making her assets last as long as possible. Brother has said he will pay if money runs out but have to take into account the possibility he may not be able to, as who knows what is round the corner.

My preference is for the flat in CH that she said she'd go into as I think move now will make transition to needing more care easier and she will have her more privacy than with live in Carer and track record tolerating Carers has to date been poor. I guess SW will mediate to some extent but seeing as we don't have a POA it isn't now up to either of us. She said a few months ago that she thought the time was approaching for a flat but then I think she lost her judgement. I will have a look at some other flats in case I've missed something as advised by Psychiatrist.

It's really sad that DH and I weren't supported when we raised our concerns about 3 years ago . She could have been on Meds much longer and we would have had more time for discussion when she was well. Instead we're in the position where she was only diagnosed in March and less than 4 months later she's deemed it have lost capacity in an area.

Thanks all. So tonight I have a bath , dad is sitting outside in garden, am drying my hair and suddenly I hear our neighbour calling out in the hall. Apparently my dad had started wandering about in the garden and the neighbours on the other side had called this other neighbour who has a key to our house. Makes me look bloody irresponsible but I was just having a sodding bath! So stressed now...

Deep breaths, this is not your fault. I think for the moment it would be a very good idea to keep a log of things that happen. Things are really not great if you can't even have a bath and you do need help. Is there a social worker involved ?

Scarlet, I'd also say that atm you are preserving the house at a huge personal cost to you, and you need to have some of that burden lifted before you burn out totally.

Wynken, I hope you are still going to have a rest and leave care management to your brother for a bit?

My mum is having a rubbish couple of days. On Thursday I got up at 5, drove to them, picked her up and took her for her CT scan. She vomited all the way there and back (she has phases of this) and wasnt very cooperative with the radiographers, but all done, and we were out of mankyhospital within 30 mins. I then went off to the airport to go and do some work in Germany.
Rang dad on my way back from airport - mum answered the phone but didn't recognise me on the phone. Dad at wits end as she hasn't eaten for two days, barely drunk 'her mouth won't swallow'. Hospital had rung Thurs afternoon that she needed blood test done asap, had faxed details to their GP. GP had appt for them this morning to get blood taken, and had note to say she needed to see GP on Monday pm when results back
Shes also talking about wanting to die again.

I just don't think dad can manage much longer. And my brother hasn't phoned for two weeks, even when dad told him last time how desperate he was for someone to chat to.