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dad has alzheimers brother mental illness they live together- worn out trying to support them

(11 Posts)
whataboutbob Wed 26-Sep-12 14:31:28

I'm writing to try and help myself get some perspective. Dad diagnosed with Alzheimers about 1 year ago but increasing confusion and memory loss for last 2 years or more. My brother still lives at home, has an unspeccified mentall illness- I honestly don't know what it is but can only imagine he has a personality disorder/ possibly aspergers+ severe depression. Had a breakdown at university, went home and never left.
Our mother died 17 years ago.The house is a 2 hour trip away, I have 2 young kids and a job (4 days/ week).
I have tried for last 2 years to support Dad, maintain his quality of life, do work on the house and deal with the increasing amount of admin stuff he can't manage (tax returns, medical visits etc). I took 3 months unpaid leave this year to devote myself to this , took him on hols etc. As inevitably happens with Alzheimers, he's getting worse and the house is squalid. I am at the point where I am stressed all the time, responding to problems, liaising with friends and acquaintances to help maintain his social life and addressing crises. At the same time, my brother's mental health is getting worse, he has expressed suicidal thoughts and self harmed (Dad thinks he's fine, I believe he's always been in denial about my brother, he also told me he should at all costs avoid psychiatrists). I went to my GP in tears yesterday and she basically said I have to accept I can't do everything, people with mental illness and dementia can be very selfish, and basically I need to take a back seat and let them get on with it and "unless they're wading through rubble and faeces they are OK" (her words). I'm nearly ready to accept that outlook, which I've always rejected in the past, feeling I needed to be a good daughter and sister and fight for them.
Any input from persons with similar experiences/ professional skills wouldbe really appreciated. I'm so tired, anxious and increasingly hopeless.Should I take a back seat/ accept the place will always be squalid?/ or fight to get psych help for my brother. I don't know anymore.

FireOverBabylon Wed 26-Sep-12 14:45:51

You don't mention adult social services in your OP. Have you been in touch with SS where your father and brother live? As neither is in a state to be a carer for the other, and you live so far away, SS need to be brought up to date with their case so they can start to provide care. From what you've said in your OP, they might be better apart, particularly so your brother can be properly assessed, so it might help if your dad can get some sort of residential care.

If they are 2 hours away and you are having to take months of unpaid leave to support them then other agencies need to be involved now so you can step back and recoup your own strength.

whataboutbob Wed 26-Sep-12 19:37:46

Yes I referred to SS and they visited, Dad told them everything was tickety boo so they closed the case. I re contacted them and they are visiting again next week, I'll be there this time. I also got him attendance allowance and he's agreed he'll use the money to get a cleaner, realistically it'll have to be more like a carer who does some cleaning as a normal cleaner probably wouldn't cope with the set up there.
At the moment there is no way Dad would go into RC. He is still quite physically autonomous and also has limited insight- he'd be astonished to know he has a diagnosis of dementia (even though he's been medically assessed and told of the findings). It's also a coping strategy I believe, to ignore the scary stuff and i guess it helps him to get by. However I accept there is likely to be a time when RC becomes inevitable.
As for my brother I don't know if I have the strength now for the fight with him/ GP/psychiatric services to get diagnosis/ treatment. I feel hollowed out by 2 years of worry about Dad.

whataboutbob Thu 27-Sep-12 08:32:49

Anyone else out there with advice? Similar experiences?

Knowsabitabouteducation Sun 30-Sep-12 13:44:14

Get help from the Alzheimer's Society. They are an amazing support network.

My mother died last year having had Alzheimer's for an estimated 10 years. Her last two years were in hospital, where she basically had no memory and was unable to do anything for herself. For a few years prior to that, she was living at home with my father but her behaviour was increasingly challenging and alarming.

My SIL gave up work to do what was required to care for her (and my father who did not cope well) even when she was in hospital. She became an expert in benefits, social care, sheltered housing, NHS departments, etc. Before my mother was sectioned, my DB and DSIL would frequently get calls from police and neighbours at 3am.

It is very hard and you can't carry the burden alone, in addition to providing for your own family. Make sure your siblings and extended family are doing something to support you.

Because I was 400 miles from my family, with a large young family of my own, and a full time job, my siblings kept the seriousness of the condition from me until they thought they were in end times. By then my mother was in hospital and father in sheltered housing. All I could do was visit as much as possible (every six weeks or so), and take my DSIL, DSis and Aunt out to lunch and provide moral support for what they were already doing. 18 months on, I still feel guilty for not giving practical help during the dark times.

Please ask for and accept help.

{{hugs}}

SinisterBuggyMonth Mon 01-Oct-12 13:25:36

Message withdrawn at poster's request.

AMumInScotland Mon 01-Oct-12 13:43:26

If people won't accept help, and they are really getting beyond the point where they can look after themselves, then a step you may have to take is to get them assessed under the Mental Health Act and "sectioned" - it sounds like an awful thing to do, but it means that they are recognised as being a danger to themself or others, and taken into care even though they don't agree to it. I'm not sure how far along the "wading through rubble and faeces" line they would need to get before they'd be considered unsafe to take care of themselves, but things like leaving the gas on, frequently locking themselves in/out, or being too confused to shop and cook would count towards it.

Websites about dementia and old-age care will have links that explain what happens, and what rights people have. It always feels better to be able to convince people to accept help, but sometimes they are just not able to accept the reality of that, and we have to play the "bad guys" to make it happen. sad

Knowsabitabouteducation Mon 01-Oct-12 18:59:42

I will re-iterate the ALzheimers Society.

This is too big an illness to go through on your own. You don't know how long it will last, and it will never get better. You have to grieve over your lost parent while they are still alive.

It is really important to understand how the disease progresses. If they are at the alarmingly forgetful stage (leaving the gas on), there is so much worse to come - walking the streets naked at night, shop lifting, cussing. Then there is the loss of reading, being able to feed oneself, double incontinence.

It is a horrible disease.

whataboutbob Thu 04-Oct-12 08:58:29

Thanks for your messages all.Knowsabit, your SIL sounds like a saint. I want one of those in a next life. Sinister I'm sorry to hear some people would use your father's diagnosis to be nasty. Muminscotland i agree sometimes it gets to the point where you have to be tough and force change through, whether it's more support at home or moving a person into a residential home. I would have thought if they have lost capacity and that is certified by a medical professional eg GP/ Geriatrician then you are on a stronger footing to get things done whether they like it or not. I've made it my business to have a good relationship with dad's GP and he's been very helpful with providing certificates, signing the POA form for me etc.
None of this is easy though. Yesterday someone at work took me aside and said I'm obviously struggling and not being particularly effective, which felt quite threatening. I've agreed to go to occupational health and may have to accept reduced hours.
Sinister maybe you need to go and see your GP and get yourself signed off for a few weeks. There are no easy answers and I don't know how far you've gone with getting help for your Dad. I've got the social services coming today and if nothing else it makes me feel less isolated having other people involved.My modest goal for now is to get a cleaner from a specialis agency going in regularly.

EqualsX Thu 04-Oct-12 09:15:09

Hi whatabout.

I'm not in the same situation exactly but caring for elderly parents with serious mental health problems. It seems to me like you are doing an amazing job and with Social Services support you will be able to find the help your family need. Residential mental health wards sometimes take people in for short periods and for assessment, or even to give carers some respite. If you can speak to your DF's GP/ SS / Adult mental health they might be able to help.

The main thing I wanted to say is that you could also consider counselling or something similar for yourself. I recently booked myself into counselling sessions as i felt everything was getting on top of me, i was feeling out of touch at work, tired etc. And always that feeling that when you do meet friends you can't relax but end up spinning them an absolute tale of woe which is no fun for them or you. I go to counselling once a fortnight for 45 minutes, its not very expensive and it has been worth it to just have someone listen to my moaning! I usually have a good cry and go home feeling a bit better.

Hope you find a solution and feel better soon.

whataboutbob Thu 04-Oct-12 19:38:14

Thanks equals It's so true that being in this predicament seeps into every area of your life even when you don't want it to. I'd much rather be able to switch all this off when I'm at work and have been trying to but obviously not too successfully. I was talking to my best friend about things and had a vision of her putting the phone down, and her husband saying something along the lines of "same old same old eh?". I'm going for counselling but find it hard to be totally open, I don't want to give in to the cliche of crying there, blowing my nose, leaving with puffy eyes. Silly I know.
Anyway the meeting with social services today was quite useful, she's putting us in touch with a specialised agency who are going to start off with a deep clean. And the OT is referring him to a cognitive stimulation therapy group.
As for my brother's problems, that is in a way the toughest nut to crack. Everyone is at pains to tell me they're there for my Dad not my brother, he'd need to go to his GP and ask for help, and there's no likelihood of that happening. I'm just too tired at present to take him to the GP, try and get them to refer on to specialised services, cajole him to attend etc.

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