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How to accept handing over care to carers?

LouisaR91

New member
Jan 14, 2022
1
0
Full disclosure, I am not a full time carer so apologies if any of this makes people want to hand me a tiny violin... This is my first post because I've only just discovered the forum but really need some advice but may get quite long due to background. My 90 Yr old grandmother was diagnosed this year with Alzheimers and vascular dementia after at least 7 years of there clearly being something Wrong and doctors dismissing it as usual effects of getting older - even when she almost entirely had lost the power of speech. She has none of the 'usual' symptoms confusion, forgetfulness, personality changes etc which I think in a way is worse because it does mean she is 100% aware of what is happening and also made every GP and dementia specialist we've seen until this year claim there is nothing wrong that would suggest dementia. This is all by the by as she has now been diagnosed and has had visits from the world and his wife to see what they can help with (occupational therapist, GP, memory clinic, mental health clinic, social workers x 3). All of which has amounted to a big fat nothing except advice we can't use (e.g. show her photos of her glory days - she's totally blind / Let her tell you stories about them - she can barely speak and it upsets her to try so we end up with howling as we try to comfort her). They all agree she needs more help but also all agree she would not be benefitted by being in a care home setting (she's extremely anti social and always has been, likes everything done her way, very fixed schedules, extremely judgemental of 'all those old people', and has said if in a home she would refuse to leave her own room - which I believe 100% and in which case her paying £1000+pw hardly seems the right choice as she can manage herself and her needs absolutely fine during the day and only needs help first thing in the morning and then at dinner time).

She has never been an easy personality. As the youngest grandchild I think maybe I didn't realise this until fairly recently. She's very changeable, judgemental, bitter and resentful of anyone with anything good going on, and does feel that we as her family should be basing our lives around her as the matriarch. All of this I am told has always been the case but got a lot worse when my grandfather passed away, and amplified since her dementia had got worse. She's also still my Granny who used to peel apples before she would give them to me right up until I was about 20....

Anyway (apologies- it has been a very long road and it's nice to talk!). My father (65) and I now go in to her house twice a day to sort out her tablets, microwave her meals on wheels, help her shower on days she feels she can't manage (which is only about 1 in 4 showers). It's not practical or possible for her to live with either of us or vice versa and dad is an only child. We're lucky she's not far away from us. But dad has his own health issues (nothing major YET but he is getting on and the whole family is very worried about the stress this is all putting on him) and we both work full time. No other members of the family have offered to help (I am the youngest of 4 kids, all local) and, even though I know it is selfish, I am starting to resent that my twenties have been characterised first by worrying about Granny and now worrying about both of them - I am stressed all the time! I lie awake for hours worrying about it, and Dad does the same and when Dad is going through a rough day with Granny, I then go through a rough day with both of them.

He and I have realised this isn't sustainable, not least because it's making both of us ill. He has finally accepted asking carers to step in so that we can actually visit Granny rather than be her carers every time. We'll still be her carers some of the time but this will now be split so that days when we're both working, she will have carers instead. Granny has been alternating between crying she wants to go into a home, that she wants carers because we don't do anything right, and that she wants none of these things because she's not as bad as we seem to think. All of this again is very distressing for Dad because he has POAs but obviously doesn't want to do anything against Gran's wishes. We've had lots of false starts both with carers and with looking into care homes over the last year or so (e.g. weeks of planning and Granny being in agreement and even relieved only to change her mind the day before and demand it all be cancelled again this is accompanied by her howling in misery so she obviously surely does mean it?)

Carers are now finally arranged. Twice a day on days we're both working. Other days we will still step in. (I say we, but mostly it will be Dad and I will go maybe a third of the time to give him a break but so that she still has family going). Dad is devastated by this decision and feels he has failed as a son, she doesn't want this, every other person caring for their LO just pulls up their socks and gets on etc etc. Personally, I feel we should ask the carer to assist occasionally so that when Dad has a day off work he has a day off caring for his mom as well...

All this to say, are we doing the right thing? And how on earth can I help Dad realise that and move on from how guilty he feels? I'm worried the benefits of him not being the one doing it all are going to be outweighed or offset by the negative feelings of guilt etc.

Thanks for any advice. Again I wonder if maybe as awful as it feels for us, it's really not that bad and we need to just Get Better At This.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,100
0
High Peak
In some ways, this is one of the most difficult stages of dementia, i.e. when the person still knows what's going on and is also somewhat feisty! Unfortunately, it often goes together with denial about what help is needed and a refusal to engage with carers. (Of course, the next day, it will all be different and you'll set things up again, only to be thwarted at the last minute, as you have found.)

You are your dad are doing a fantastic job. You're wrong to think everyone else does it better - I certainly didn't.

I don't have any magic answers because there aren't any and I can only suggest you continue as you are, carefully putting the idea there that help is needed and it won't always be you and your dad. You could start inventing reasons to step back and let the carers take over more - 'I've done my back in and won't be able to come for the next week/2 weeks so A and B will be popping in to sort your meds...' That's always a good one. Then it can be your boiler that's gone and you have to wait in for the men to come and fix it. Basically, be creative, be imaginative and lie through your teeth.

One thing both you and your dad need to get over is the idea that you must always do what your gran wants or says she wants. She's very ill and is losing her mental faculties. She can no longer think clearly and logically and is unable to see her situation for what it is or realise how much help she really needs. For that reason, you must now act in her Best Interests. The day will come when she NEEDS to move to a care home, whether she wants to or not, so I'm afraid you'll have to grit your teeth, stay strong and override her wishes.

Good luck and keep posting!
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,283
0
Nottinghamshire
Welcome to the forum @LouisaR91

If I was in your situation I would make sure that carers were visiting everyday as soon as possible. Your grandma may not like it but she needs it and so do you and your dad. You may find she even enjoys the visits when she gets used to them - my dad did.

I have to admit that I felt like your dad, that I’d failed my dad if I didn’t do everything for him, but I was wearing myself out and didn’t realise until dad had his lovely carers visiting to make sure he was ok, had taken his pill, been fed and kept clean. Best of all I had a bit of my life back. I still saw dad most days as I lived close by but I didn’t have to start cleaning and cooking and bossing him about when I got there! Our relationship definitely improved too.

It may take time but be persistent- it will pay off eventually.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,852
0
Kent
Hello @LouisaR91 Welcome to Dementia Talking Point.
Granny has been alternating between crying she wants to go into a home, that she wants carers because we don't do anything right, and that she wants none of these things because she's not as bad as we seem to think.

Granny doesn`t seem to know what she really wants and it`s impossible for you to agree with what she wants in the moment.

However good your care package is, what happens during the night? Granny is alone.

I had a care home on standby for my mother. When she expressed a wish to go into a home we acted there and then.
I admit it was difficult in the first few days. My mother protested strongly. The staff were very good and eventually won her trust and she spent the rest of her time being looked after properly and we were released from the dreadful nightmare of attending to her when we could and worrying if she was safe when we were working.

There was a resident in my husband`s home who never came out of his room. His door was always open and the staff were in and out, taking his meals and attending to him.

You do realise your gran is as well as she can be and her condition will deteriorate. However upsetting it is for you and your dad please don`t wait for a crisis.

You may have a difficult decision to make but is it any more difficult than the position you find yourself in now.
 

Violet Jane

Registered User
Aug 23, 2021
792
0
You and your father will have more time to enjoy your grandmother's company. People with dementia want you to have a cup of tea and a chat or perhaps just sit with them but you don't have time to do this when your visits are taken up with meal preparation, cooking, washing, washing up, tidying, cleaning etc. You end up rushing around and focussed on tasks to be completed which can create a very tense atmosphere. Delegate as much as you can to carers. There will still be plenty of things that you will need to do because carers only do personal care and a bit of cleaning. You will need to deal with her life and health admin, finances, shopping, maintenance of the house and garden.
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,398
0
71
Dundee
Welcome to the forum @Violet Jane. Your situation is difficult but it's so important to ensure the carers are in place. My own mother was very resistant to carers. She lived with us and eventually I managed to get them in place through mum thinking they were my home helps. Gradually she accepted them looking after her. During this time my husband saw their coming and goings and when it was necessary to have carers looking after him he accepted them being involved with his care.

Not an easy situation for you but you have found the right place for understanding and support. Keep posting.
 

canary

Registered User
Feb 25, 2014
18,186
0
South coast
I would like to re-iterate what has already been said on this thread

There comes a time in dementia when you have to switch from enabling what they want to implementing what they need.