I want to kill my DB

(21 Posts)
melsbelles Mon 28-Nov-16 22:41:57

Mum and dad, both 88. Mum ill since I was a child. Rheumatoid Arthritis. Wheelchair user for last 30 years, housebound, and paralysed following a further virus. Lived in one room for the last 15 years ( in a reasonably sized house). Never been out since then, cannot feed, toilet or drink without major assistance. More recently has become blind and suffers from moderate dementia.
Great social care package. Worked until last year. She became v ill last Xmas. GPs amazing since then. Not on their radar before because of her no treatment attitude. Since then every time I see the GP he expresses his concern about dad providing significant care, given his age and frailty.
I respected their wishes but have recently taken early retirement ( their situation was a huge factor in my decision, but not the only one).
Told my DB I feel situation is now really dodgy as dad has become confused and ridiculously frail (8st) . Don't believe he has dementia but is exhausted. He wants mum to be happy but is willing to listen to us about logistics.
DB visited them yesterday for two hours, he usually visits about twice a year for this amount of time but, this year, due to circs has been up four times. Lives 90 mins journey from them, I live 30 mins away.always visited 2x per week, now daily. DB Has now sent an email telling me I am over reacting and we should not review situation in new year as I had suggested.
I really want to scream! We both left home for Uni but I came back to the area, he stayed further away, both done well in life. However he thinks that he knows best. 1. He doesn't 2. He won't visit again for two months ( he has already said he is too busy) so I pick up the pieces.
However as my bro is saying what dad wishes to do, he will listen to him not me. I feel so alone. AIBU to think this is unsustainable?

Scottishchick39 Mon 28-Nov-16 22:46:51

What would you like to happen? For your mum or both of them to go into a care home? Just wondered if it's the thought of losing his inheritance that has made him reconsider things?

TheHouseOfIllRepute Mon 28-Nov-16 22:52:24

What about a half way measure such as extra care sheltered housing?
They would have their own apartment but with care on site and on call if required

melsbelles Mon 28-Nov-16 23:17:08

Hi. Thank you for your comments/advice.
Scottish, dad doesn't need a care home but does need some rest. Mum definitely needs a care home DB does carefully monitor their resources. I do ( hate myself for this) wonder about his motivation. We only did ok in life because they gave us opportunities they never had. They both left school at 14 but dad studied and they saved every penny They have also been very generous when we have needed it.
House, in most circs a great suggestion but no sheltered housing would accept mum even with dad because of her complex needs. They only "get away with" living as they do at the current house, which they have lived in for 50 years, because Social Services know that however much support they put in its cheaper than the care package mum would need in a home. I used to work in this field and so they were quite honest with me.
I am sooo grateful for your responses flowers

Thatwaslulu Mon 28-Nov-16 23:20:32

Extracare sheltered housing sounds just right in this situation. It's housing provided for those over 55s with no care needs right up to level 5 care needs, behind their own front door in a complex. Importantly it means that a couple with differing care requirements can continue to live together but be supported as needed, especially where one person needs support and the other doesn't.

OP, I know this is not a permanent fix maybe just temporary to see how things go, but is there any way to get some respite care as an option to see how things go?

I appreciate your feelings though, when someone is not closely involved and then it appears as if they waltz in all-knowing. It must be incrediby worrying and frustrating for you. I hope whatever happens things go well, have a very close relative with rheumatoid arthritis and some other things and it is awful to see the pain and suffering they have, particularly as this weather starts up flowers
.

PacificDogwod Mon 28-Nov-16 23:52:43

V difficult and I feel for you.
My DMother and her sister had a similar dynamic when trying to decide what was best for my gran who had very severe dementia and was cared for at home.

Would your father (and your mother) agree to some respite for your dad? A week's 'holiday' in a local care home to give your father a break and allow for a breather to regroup?

Has there ever been a needs assessment carried out by SS for either of your parents? Your father could have a carer's needs assessment carried out, quite separately from your mum.

Wrt your brother - oh sigh, I don't know.
Either keep doing what you are doing, supporting your parents and keeping lines of communication open with your brother, or have a big fall-out.
It seems to be so often the case that the dynamic is for one much more involved adult child being overshadowed in esteem by a much more distant adult child whose opinion somehow counts for more.
My mum did a lot of a grunt work for my gran, whereas my aunt was the 'Disney daughter' to steal that phrase: she made short appearances, always bearing gift, gave tinkly laughter and small anecdotes while my gran could still follow conversation, but was not available for any decision making, medication management or hands-on caring. Unfortunately my mum is not very assertive and just felt bitter and hard-done by with a lot of PA, dysfunctional communication going on.
Even from a distance (I live abroad) it was hard to witness - I love my mum and I love my aunt who is in fact great fun, but I'd not want her by my side in a crisis wink.

Get support on board, for both your parents' sakes.

KarmaNoMore Mon 28-Nov-16 23:58:08

I have noticed that is often the members of the family who are less involved, the ones who think that less care is required, mostly because not having day to day contact with the cared for, they just assume that things sort themselves up by magic.

I do hope you manage to find a solution that works for both your mum and dad. As for your brother, I know you would love to have his support in supporting your parents, but if it comes to making decisions about their care, it may be better if he keeps out of it, as participating on the decisions will equate to have an uninformed person calling a significant part of the shots. I understand however, that this may not be possible if you require his financial contribution to arrange the care your parents need.

My ex cared for his very frail grandmother for years, and yes that involved a lot of work and tasks that people who are detached from the situation find difficult to imagine. I remember that one day his sister agreed to check grandma for a day. She rang out in panic after finding out she had weed on the bed, couldn't lift a leg to get in the shower and that she needed to dress her up. To be honest, it was not her fault, I suppose that as she only visited for half an hour at lunch times, once in a blue moon, she used to find grandma clean and dressed sitting in the living room and the house tidy and refreshed by the carers or my ex, so she had not been able to grasp the severity of the situation at all.

Needmoresleep Tue 29-Nov-16 00:01:26

Your brother seems to be in denial. Surprisingly common. Parents too will often minimise problems when the golden boy visits, where as they may be more open with you.

No easy answer. You could try to get someone, like a priest or someone to write voicing their concerns, and he make take notice. But I suspect it may take a crisis.

Would he consider some respite, simply to help keep your dad going. Or argue that very sheltered would keep them out of a carehome longer and so save costs.

Do join us on the elderly parents board. Probably no solutions, but a chance to rant and receive sympathy.

Sgtmajormummy Tue 29-Nov-16 00:07:41

I would be getting their GP on your side. He has already expressed concerns and would be the one to officially state the level of care they need rather than want or can manage with/without.

An 8 stone person, at 88, cannot be expected to do the physical work a proper carer does, although he has outside help.
Don't allow your brother to leave it until it's too late, OP. Your parents need to still have the will to make sheltered housing work.

You have experience both professional and on the case. So does your GP. DB doesn't.

caroldecker Tue 29-Nov-16 00:35:39

Not sure why inheritance enters into this. If mum goes into a home, her house is not used as payment because dad lives there. Only an issue if lots of savings in mums name.

MatildaTheCat Tue 29-Nov-16 00:37:12

Could you ask for a SS review since the situation has deteriorated? It would be a far better option to find your DM a good nursing home now rather than when an emergency arises,mw hitch it definitely will at some point.

Have you been able to visit a few places and ask for recommendations to find somewhere suitable? I would be doing this and also investigate applying for Continuing Care which basically covers the fees if you meet the criteria.

I would then sit down with your parents and pretty much insist on a trial run of a few weeks. DF will need a way of visiting so consider all of this before presenting them with some choices.

Your db simply doesn't get to call the shots here. Your parents need urgent intervention to keep them safe and well cared for and he isn't going to provide it.

It's sad but very common. When my DM was caring for DGM in her home, full time with dementia, her db refused to believe she needed residential care. Mum and dad went on holiday and sent DGM to stay with db and his wife for a couple of weeks. Surprisingly they agreed after that.

Benedikte2 Tue 29-Nov-16 00:41:35

I've no practical advice OP but just wish to offer my best wishes. You are in a heartbreaking situation.
Have you discussed the matter with the LA's social worker re options and what they can suggest re respite for your DF?

lola111 Tue 29-Nov-16 00:54:29

I think your dad would certainly benefit from your mum being in respite.unfortunately ( and this is a common misconception on Mumsnet) you cannot force decisions on elderly people like your dad unless it is formally shown they lack capacity.do you or your dB have power of attorney for your DM?

lola111 Tue 29-Nov-16 00:57:06

Oh and the council will put a charge on your parents home for care home fees when your mums savings run out .given the level of care your DM needs it could be £1500 a week

caroldecker Tue 29-Nov-16 01:02:46

Lola That is bollocks. the home is ignored if a partner lives there. age UK advice

melsbelles Tue 29-Nov-16 09:10:03

Thank you so much for all your messages and suggestions. Before I posted I felt so alone, I am sorry that others have similar problems however your advice is invaluable. Had thought of respite but put it on the too difficult pile. I will now go and investigate some homes, and strongly suggest we try this. I do have power of Attorney (they gave it to me some years ago when things started to deteriorate) but have never used it as dad is still mentally capable.i would rather persuade but it is there as a last resort . The idea of the Disney child, is new to me but feels so familiar and it made me smile. Care costs are something we have to suck up so don't really bother me (DB may well think differently)
Lastly this is my first thread and boy do I now get the power of mumsnet at its best. flowers

bigoldbird Wed 30-Nov-16 18:02:06

Not sure if this is helpful but when I was at the end of my tether I e-mailed my siblings telling them the situation could not go on and I wasn't going to do it any more. I unplugged my phone and within a couple of days of them getting phone calls 3 or 4 times a night from the care line folk, and several calls a day from the carers they came round to my way of thinking, and luckily we were able to get Mum into a lovely care home fairly quickly. Good luck, it is really hard to deal with this stuff.

dibs1973 Wed 30-Nov-16 19:24:52

Does you mothers care require your father supporting her during the night? If so and they are reluctant to consider respite care could you request a night sitter?

SheepyFun Wed 30-Nov-16 19:36:33

In my case, it was my grandfather who was increasingly frail, with my grandmother (then in her 80's) caring for him. Eventually she couldn't cope (he was up a lot at night), and he went into a home (planned to be temporary, but he got a chest infection and didn't make it back home). My grandmother was looking at getting a night nurse, but even 8 years ago, it wouldn't have been cheap, about £50k/year. Even though my grandfather's pension would have covered this (yes, really), other family members suggested that they should look at cheaper options. My grandmother (who is still fully capable) ignored them. Would a live-in carer help in your situation? It sounds as though there might be a spare room in the house? Then your father wouldn't have to move.

PacificDogwod Wed 30-Nov-16 21:32:23

I'm glad you found your thread a bit helpful and at least supportive.
Unfortunately, many people are in similar shoes to yours.

There's an Elderly Parents board on MN - worthwhile seeking out?

Plan for the worst case scenario, then hope for the best.
Good planning is SO much better than having to act reactively when the crisis has happened.

thanks

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