I think it's time mum went into care before this evil disease rips my family apart. How do you cope with the guilt?

[MellowAfternoon]

I was truly hoping mum could stay in the only home she has known throughout her 52 married years but 7 years into her dementia journey things are becoming harder each day.

She's doing well in a lot of ways, she's mainly continent (apart from the odd accident here and there), takes herself to the toilet with a little assistance at times, can feed herself and drink from normal cups etc (she can not make any food or drink for herself though), still knows who we are etc but she is very confused at times. Apart from the two days a week she goes to a day centre (where she does really well) she is just sleeping on/off on the sofa throughout the day.

Tbh, my biggest worry is my 83 year old dad. He is not a natural born carer and very much struggles with his role as carer. I pop in 5 days a week and my sister 3 days. We also have a carer in every morning for an hour to shower and dress mum but it's not enough. The truth is that dad can't cope. I totally understand as mum is basically like a toddler now. This would be hard on the hardiest of carers let alone an elderly man who has never cared for anyone let alone his wife of 50+ years.

My dad will not pay out for any other help, the carer is paid for by mums AA and dad pays for the two days centre sessions but he moans every day about the cost and refuses to pay for anything else (despite having £££££'s in savings).

I think deep down he would like mum in a home and as much as I hate the thought of her in care the truth is I'm struggling to cope with one parent with dementia and another in deep depression as well as trying to deal with my own anxiety/depression/chronic health issues and my own dc and life.

I am currently out of work due to my health issues but will need to return to work soon due to lack of money. I worry how my dad will cope once I am unable to pop in 5 days a week, he struggles now.

But the guilt is overwhelming, I've done all I can over the last 6 years but it's now destroying me (well, all of us). It's not mum's fault, she didn't ask to get this wicked disease and I know she'd love to stay in her home but we have no choice, do we?

I'm currently in the same position as you, she's moving Friday.
just keep telling yourself it's for the best. Think of the damage they might do to themselves if they aren't in care.

my mum has started moving furniture overnight as the move is obviously playing in her mind. She wouldn't be able to move the things she's moved during the day! I'm surprised she hasn't ended up in a&e (I hope I'm not tempting fate)

What about starting with a couple of weeks of respite care? Could one of the family take your Dad away for a few days while she stays in a care home? Or even if he was just at home it would be a break for everyone and introduce the idea.

Sorry for the double posting but there are also big benefits in going to somewhere while she still has some capacity to learn new people, routines etc.

I have neen told that too @helpfulperson

If you find a lovely home, I promise the guilt will alleviate quickly after she moves. The worst weekend of my life was the one before my mum had to move out of the house she had lived in for 50 years. But you know it’s time and it’s so much less stressful for all involved once a suitable home has been found. The only thing I would say is to take care choosing a care home, they vary enormously.

There is a lot to be said for people with dementia being in an environment where there are trained staff and activities designed for people with dementia. At her stage your mum is likely to become acclimatised to her new environment quickly although the actual move is likely to be hard. Agree with the suggestion to try respite care in the first instance.
its hard not to feel guilty but you need to look after yourself too. I am going through something similar.

Having worked in nursing homes, I agree there are real benefits to moving into one sooner than later. These people are far more comfortable and settled in their environment, even when their dementia is advanced, they have an understanding that this is their home, and know their way around the building etc.

You say your mother would want to stay at home. But those kind of statements were made in her better days when she just envisioned it to be similar to her previous life . Well that is gone and with it the ability to make safe decisions. I was told this by an experienced person who deals with dementia. If the person feels safe secure and looked after properly in a Care home it may not be the disaster you think . People are rarely constantly distressed in homes as they adapt to the environment. I was pleasantly surprised at the amount of contented people I worked with in homes who were glad to be in a safe place.
I think this is a discussion we should all have with our relations . I have told my kids that obviously I would prefer to be at home but will totally understand if that becomes difficult. Just find me a decent one though!

My mum suffered with dementia in her latter years. She lived alone as she got progressively worse. She had repeated falls and, despite being repeatedly asked to, my sister and main carer kept her in the former marital home and pointedly refused to consider a care home. She put her own needs, to be seen to be the perfect daughter, before mum's safety.

She wasn't safe at home and would have been better off and much safer in a care place. The last fall took her into hospital, where she died.

It's a hard decision and I wish you well at a tough time, whatever you decide.

If he's reluctant even to pay for any other help surely he will be completely against having to pay for a care home? (Assuming their finances are joint).

If your father won't pay for extra care at home, how is he going to be about paying for her residential care? I am assuming she will be self funding as you say they have ££££ in savings. That's going to be a hard discussion and you need to be prepared.

He doesn’t sound like a nice or kind person at all.
is he impossible to have a conversation with, does he stamp around, or actually engage to find a solution.

I think that you have to start with reality.

You need to get back to work, and the caring that you have provided needs to come from somewhere else.

He sounds extremely entitled wanting access to other people’s time and resources but only putting hurdles in the way. The help he wants is paid help, if he won’t pay he has to do it himself.

You need to have a blunt exchange here and he needs to get a grip.

Thank you everyone. Tbh my father is the biggest source of stress for us right now. I know he hates the situation and is struggling but so too are the rest of us. Their situation is having a hugely detrimental effect on our lives but he has become blind to it all. I do totally understand which is why I go out of my way to help but it is a constant battle with him.

He won't agree with anything suggested to him. We had the GP social prescriber come to their house last week, she had so many leaflets for local organisations who can offer sit in services, extra care and even places for him to go to but he has refused it all.

In all honesty I think he has reached a point where he just can not handle nor face seeing mum going this way and I think it is going to be a case of 'Out of sight, out of mind' with him. I read a book recently written by a woman who's mum had dementia and her father (an ex-GP) just could not face seeing his wife like that and when she was put into care he no longer visited her, it was down to the daughter. to do it all. I think this is what I am facing. I hope I am wrong but I know my father well, all he says all the time is how this is ruining his life, he has become blind to the fact it's completely destroying my poor mum's and his two daughter's lives also. He doesn't seem to care about anything anymore, he is very depressed but won't visit the doctor about it so our hands are tied.

Anyhow, thank you everyone. I am going to suggest we pop to a lovely local care home that has been recommended to us next week and see if we can start with some respite.

I think some of you are right in what you are saying, I watch mum at the day centre and she loves it there, hopefully she will like the care home once she engages with them all there.

Likely he will have to pay for her to go into care if he has £££££ in savings. Much cheaper to have care at home.

I agree with that. Sooner the better really, ideally before they "need" to go into a care home, so that they can be part of the selection process, have time to choose the "right" home, and get used to it and join in activities, meet new people, etc., whilst they can.

My MIL has just died, and she had ever worsening dementia for around 7 years. She was adamant she didn't want to go into a home and the family supported that, but it was her who suffered in the end as she got "past" the point where she could make rational decisions, ended up very lonely, disorientated, etc. Family did all they could do, going every day, sometimes 2/3 times a day, making her meals in the last few months, etc., but she was constantly lonely, phoning up her daughters several times per day asking the same question, asking when she'd see them, etc., even literally when one was driving away as she'd already forgotten within a couple of minutes. She even started doing very dangerous things, such as cutting live electrical cables with scissors when she wanted to turn something off, such as the television as she forgot how to turn it off with the switch or remote. She was a danger to herself to be left alone, but she refused any carers into her house (we tried, Oh how we tried!) - she'd not let them through the door. It was family only, and when family are working, that's not easy! But she couldn't comprehend they were working - they'd tell her but she'd forget straight away.

Sometimes you really do have to be "cruel" to be kind.

Lose the guilt OP. If your DM goes into a care home, she will almost certainly get much better care than she's currently getting from your elderly dad, your run-ragged self (who will soon need to return to work) and a once-a-day carer. I don't really understand the agonies of people who don't want to put very unwell people somewhere where they will get the care they need. She will almost certainly be much better off in a good quality nursing home and you, your father and your Dsis will be able to go back to being her DC and her DH without the burden of caring, which is such a difficult and thankless task. Do what is right for all of you and try not to feel guilty!

People often do so well in care homes - better than at home. There comes a time when caring for someone with dementia takes a community; good care homes ensure people are safe, clean, warm, well fed, well medicated, busy and active. Loved ones can go back to being loved ones instead of stressed carers.

However, if your parents have savings then it will need to be self-funded, and that will be expensive. Do you think your dad will accept that?

What would you want if it were you?

There is no way I would want my husband falling into depression or my daughters running themselves ragged just to keep me in my home at a point where I have lost a lot of marbles anyway.

Do you think your mother would want that for you or her DH?

I work on a large advanced dementia unit which has 27 residents. It is certainly not perfect. Staff cannot make residents do things like shower or eat. We encourage and cagoule. Activities are often not as abundant as the sales staff will make out. HOWEVER residents are looked after. Medication is given, meals at regular times etc. The truth is your mum will probably live longer in a care home. Persi would look at smaller homes. Dementia patients often wander to a fault and long corridors can result in them literally walking miles every day. Costs are horribleof course and usually you pay a months fees as a depositand then pay on advance. The deposit is refunded when the room is no longer needed. I would phone around and book some visits with both parents. Good luck.

I'm in a very similar position. This morning I arranged respite care of a month for my Dad.

Dad's been reliant on me now for almost three years since we lost Mum. He's slowly deteriorated and was given a dementia diagnosis a year ago after falls and confusions got worse.

Then he moved to live with us 100 miles away as he didn't want daily care coming in. He has, as you would predict, continued to deteriorate. We are doing OK, he's a lovely person to have around, but some days the dementia makes it very challenging and I'm knackered.

Dad has been on a short term respite care waiting list for ages (we were advised to get him on one as they take ages to get places at good homes) and they suddenly called this morning to say there's a place expected to be coming up soon for a months respite care, would Dad be interested in taking it as he's next on the list.

I spoke to Dad and he's content to go. I was in good spirits about it too this morning when I booked it knowing I'll get a break. Tonight, I'm racked with guilt!

That's really good news, I hope your dad settles in well and it allows you to take some time out, we all need that on this journey, it really is hard work at times.

I hope it goes well for you both. I understand the feeling of guilt, I am currently wracked with it.

Dad and I are going to visit a local care home on Monday and see if we can start to arrange some respite care. Finger crossed.

Thank you. Dad and I are going to pop in and look around a small care home which is around 2 miles away from us. It has a max of 30 residents and has a good QCC rating so I am hoping they may be able to offer some respite to start with.

I have said for some time that if this is my fate there is no way in hell I am going to allow my children to go through this stress. I will not expect them to look after me. I know my mum probably wouldn't have wanted this but my dad is a whole other story. He is old school and thinks children, especially a daughter should be on hand to look after elderly parents. (he never once had to look after his parents when they were elderly as they both died fairly quickly) He also believes because he has worked all his life that the government should look after him or mum if they go into a home, hence the reason he is so reluctant to spends his small fortune, which is locked away in investments.

It is my father who is the main issue in all of this tbh.

No, that's the stumbling block we have. He moans about the cost of day care so I can't see why he keeps saying mum needs to go in a home, he will moan like crazy if he has to pay out £100k per year. We simply can not win with my dad. Damned if you do, damned if you don't. We just go round and round in circles.

HI OP, I'm sorry you are going through this. I definitely felt that guilt when my father went into a nursing home eventually - but by that stage he was well past needing it. It took a crisis and him being in hospitalised, and the doctors saying he can't go home and needs 24hour care for us to realise it. We did our best for him at home, but by that stage we were at breaking point.

Like others have said, it may have been better for us to move him sooner, when he could settle in to a new routine etc. But we stubbornly carried on, not coping.

I'm sorry - it's an awful time, I still remember the stress of it all. To be honest it was a relief when my dad went into care - we knew he was looked after and could relax a bit.

I remember saying to one of the care staff how hard their job must be, and she said it was different as they are fully trained, they get breaks, they are paid, and also not emotionally involved. For example when my father got angry or lashed out I would take it personally, as I knew it wasn't really him, but the staff just knew this is part of the disease.

As for your father - he is struggling with the loss of his partner of 50 years, my mum struggled as well. It so hard, especially if he is not a natural care giver, or if your mum was the one to look after him usually.

Maybe you should take a step back, if you get another job you will need to. He might then realise that he can't cope without paying for more care... or I'm sorry to say it might take a crisis for him to realise what needs to be done.