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Care & carers

Father worried about leaving mum alone if he goes first.

(19 Posts)
meet Tue 31-Dec-19 22:51:33

My dad is worried what will happen to my mum who has dementia if he was to go first.Please advice as I don't know what to say to him, she is still with him in the family home and he is her full time carer, he would never dream of putting her in a home.

tanith Tue 31-Dec-19 23:02:51

How sad that your dad is worrying about this but unless a family member is going to step up to become her carer that well maybe what has to happen sad as that is. Not much help am I, sorry.

rosenoir Tue 31-Dec-19 23:46:13

It will be carers in the home or a care home, maybe if you do some research on both and see which he is happiest with it may set his mind at rest.

If possible the odd day of respite in a home or day centre will prepare them both.

Daisymae Tue 31-Dec-19 23:47:12

Well I guess you need to tell him what your plans would be. If she is going to go to a home then have one in mind. If you are going to take over the responsibility then tell him your plans.

annsixty Tue 31-Dec-19 23:55:51

Can I be very naughty and say whatever your plans may be, and I do know how very difficult, nay impossible to say, that you say to your dad you will be totally responsible for your mum’s care.
He will hopefully reassured and will stop worrying.

Izabella Wed 01-Jan-20 00:03:52

I have early alzheimers. I cannot offer suggestions as to your own particular situation, but whatever it is, your dad has to take action now. It may seem an uphill task but social care need to be aware of the situation now, rather than wait for breakdown. Your mother is a vulnerable adult and should be afforded the respect that difficult situation brings. A very hard situation for your father to accept, but we have learned that sticking your head in the sand is never the answer.

We are moving to an extra care home with our own apartment so that as/when either of us need the 24 hour care required, it will be on hand. It is hard to downsize, and moving when older is often seen as 'too much trouble.' The alternative of doing nothing is worse.

I wish you well. Feel free to pm me if you need further help (my OH helps me post now.) Look at the alzheimers society website and get help and support from their online/telephone facility. You should also be entitled to either a support worker or admiralty nurse depending on where you live.

Hithere Wed 01-Jan-20 00:45:16

Your father needs to start making arrangements in case he is not able to care for his wife - carers, nursing home, poa, etc.

BradfordLass72 Wed 01-Jan-20 06:47:46

What a wondefully helpful and supportive post Izabella - I am sure others will derive a lot of comfort from it. Thanks too, to your OH. flowers

Ginny42 Wed 01-Jan-20 07:12:40

I understand his wish to care for your mother, but he does need to have respite sometimes, otherwise he may become poorly sooner than he might think. He needs to stay well and strong so that he may continue to care for both of them.

Where I live finding carers has been a nightmare for two friends in the last year, so perhaps begin to make enquiries so you have information if it should become too much for your father and the family. You don't have to do anything about it, but being aware of what's available is a wise move.

dragonfly46 Wed 01-Jan-20 07:17:06

My parents were in the same position a few years ago. My dad made the decision to both move into care. He asked me to find somewhere suitable. I found a home where they had adjacent rooms and which also had facilities for dementia patients. They used his room as a sitting room and spent their days together.
My dad did go first 18 months ago but he went in the knowledge that my mum was being well cared for in the home and by myself.
Hard decisions have to be made I am afraid at this time.
My mum is still alive and living happily in her own little world. I visit often but do not have the ultimate responsibility.

I wish you well.

Witzend Wed 01-Jan-20 07:51:11

Personally I would say whatever will put his mind at rest, even if it means breaking a promise later.

Looking after someone with dementia 24/7 can often be more stressful and exhausting than anyone who hasn’t done it can imagine (yes, I have done it and was blithely unaware beforehand) so please don’t feel terrible or guilty if the time should come later when you just can’t commit to full time care.

A lot of people are horrified at the mere thought of care homes, and people who’ve never had to look after anyone with dementia may make very pious comments about anyone contemplating such a move, but despite the horror stories there are some very good care homes out there.

wildswan16 Wed 01-Jan-20 08:48:39

What you don't want is for your father to continue being worried for the rest of his life. The only way to prevent that is to actively look for solutions now.

If there are no family members able to take on the task then you both need to start looking at the alternatives. Visit some residential placements, work out costs, check out their reviews etc. He will feel better if he can imagine her somewhere safe and well run if that turns out to be needed.

sodapop Wed 01-Jan-20 09:03:53

I agree with wildswan16 start looking at alternative care now. Short periods of respite care or family arrangements to take over care of your mother.
Izabella made a good move but that's not for everyone of course.

M0nica Wed 01-Jan-20 09:08:17

Tell him whatever will assuage his worries and fears, regardless of whether it is something you will be able to do once he dies.

His peace of mind while still here on earth and functioning is far more important than what may happen if he does not out live his wife.

However, to bring everything down to the here and now, both of you need to think about what you will do, if he becomes, while still living, unable to care for her - and that may be the more probable future scenario.

I think it is very foolish, to make great statements about never putting someone in care or having carers. I have already made it quite clear to my AC and DH, while I am in my right mind, that they must put me in a care home, as soon as my day-to-day care at home becomes onerous. I do not want to cause my DH or AC anymore stress than is absolutely necessary.

Witzend Wed 01-Jan-20 09:35:23

If he hates even the thought of a care home, then personally I wouldn’t bring the subject up now. Many people have a fixed idea that they are all neglectful and uncaring hellholes where people are just dumped to die.

As some of us will know, this simply is not true, and it’s not necessarily a case of the best being the most expensive, either. I won’t pretend that finding the best and most suitable is a walk in the park, though.

As for moving house now, it may in some cases be very sensible, but past a certain stage of dementia it may very well be enormously unsettling for the sufferer - not to mention all the hassle, stress and upheaval for the partner - goodness knows it’s often stressful enough even when you are relatively young and fit.

In the meantime, arranging some help, either with actual care or just a sitter to give the main carer an often much-needed break, or making some adaptations to the house, may be the way to go - if it’s felt that such things would be appreciated.

mamagran Thu 02-Jan-20 17:04:49

Hi meet. I am so sorry to hear your story. It's truly sad to read... You can try researching a dementia home, but that is not always the best option. It depends what you or your dad want. Probably the best option is getting a dementia carer for her. So a private carer is probably the best. You can even hire a live-in carer too. Here is some more information I have found online:

Hetty58 Thu 02-Jan-20 17:11:15

I think it's pointless worrying about it. Maybe he just wants to be reassured that you'll look after her if/when he can't. It's impossible to make arrangements in advance, though, as there are too many unknowns.

Witzend Fri 03-Jan-20 11:41:28

Cost may not be an issue, but we looked into live-in care for an aunt of dh - frail but no dementia - and it worked out even more expensive than a nice care home. Plus there are all the expenses of running a house on top.

Live-in care for someone with dementia, at least past the early stages, may work out extremely expensive indeed. Such a
person will typically lose all sense of time, day or night, etc., and may well be up and down half the night, wanting or needing attention.

So more than one carer will almost certainly be needed, to allow for proper sleep, breaks and time off. From (too much!) experience, people with dementia do often need 24/7 care, by which I mean someone on hand ALL day, ALL night, 365 days a year.
Which is IMO often best provided in a good care home that caters for dementia.

Plus there is the question of good, adequate training. Any live in carer(s) for dementia really would need it - most people with no experience honestly don’t have much of a clue - and I say that as someone who had to learn the (very) hard way.

mamagran Wed 15-Jan-20 15:42:37

From what I've researched online I could tell that care homes most times can be twice the price of care at home. Depending on how much care the person needs, you can either hire one carer or two. Of course, if 24/7 care is needed, two carers need to be hired.
And on the second point raised, there are carers who specialise and have experience with dementia. So many care agencies have sprung up out of nowhere, but there are some select few which can actually provide trustworthy carers with years of experience.
I suppose it's down to conducting a very thorough research and vet multiple agencies, look at the carer profiles and check their reviews.