How can we support my mum (the carer).

[Ladywiththebaby]

Apologies in advance - this might be long! My dad is in his 8th year since diagnosis with Alzheimer’s. He lives with my mum who is his sole carer. He can’t dress, wash, shave, read…anything by himself. Toilet habits are getting increasingly difficult as even if he knows he needs to go, he has difficulty recognising WHERE he should go, even if he is in the bathroom and wees in showers, all
along the landing, up against baskets… My mum gets up with him up to 5 times a night because he wanders and left alone he will wee somewhere random. He wears incontinence pants but he isn’t at the point where he will routinely just do it in them. He can usually eat himself but last week he started just cutting food up but making no effort to put it in his mouth and had to be shown how to drink a cup of tea (although it turned out he had Covid with no symptoms so maybe that affected him?). He is almost non verbal - if he does talk it doesn’t make sense.

My mum is absolutely on her knees. Yet she refuses help. We have spoken about a day centre that we have both heard is good (she does go to a support group with him every Tuesday and others there have recommended this day centre). I have been in contact with them and they are very happy for him to go to a trial day. But she won’t let me book it. I have arranged for a carer to come and help mum a couple of times a week starting this afternoon. And we have talked about Care Homes because over Christmas at her lowest point she was saying she couldn’t do it any more and was ready to start thinking about Care Homes (which she has ALWAYS been adamant she would never put him in a care home and made us children all swear that if anything happened to her, we wouldn’t either). We talked about all this because she was phoning her three children in tears on a daily basis saying she was unable to cope. So we were trying to put things in place to help.

But she seems to want help one day and the next wants nothing to do with any help. She has called me in tears several times since I arranged it because she wishes she had never agreed to this carer coming today. I know she’s just worried because it’s new and I hope once she’s been once she will see it’s all fine but this is so stressful. The Care Home is definitely back off the cards and I darent even mention the Day Centre as she feels she is being overwhelmed. And I appreciate that’s a lot of stuff to take on board.

So what do we do to help? Literally just this morning she’s been in tears because she has to deal with it all by herself (2/3 of us children work full time but we do all call her every day and I’m seeing her this afternoon). But she doesn’t want the help we are trying to arrange. Argh - literally just heard that she has cancelled the carer!! I’m really struggling to know what to say and do. She’s really getting herself worked up that this carer has said she will help get dad up and showered and dressed. And my mum says he definitely won’t let her. Unfortunately because my dad then got Covid and so the start was postponed she’s had WAY to long to worry about this and has worked herself up into a frenzy - that will now go on until Monday when the carer is due to try again.

Anyway - not sure what I’m asking but can anyone offer any suggestions as to how to help my mum accept the help she desperately needs? I can see her ending up ill herself and then my dad will have to go into care anyway and it will all be horribly rushed and he will end up in some emergency place that no-one has ever set foot in before!

 

[Chaplin]

Has your mum had a carers assessment? If not you need to contact Social Services and arrange it. Your dad probably needs a care assessment too.

It is hard getting people to accept help and I can see you’ve tried the gently, gently approach which is proving to be frustrating and not getting both your parents what they need, not necessarily what they want!

I don’t think anyone should put pressure on others to agree not to place someone into a care home. Sadly desperate people do desperate things and it sounds like none of you are in a position to care for him full time anyway.

Sometimes you have to be tough with your mum, explain to her that if she doesn’t accept help now, if she’s taken poorly, your dad may well have to go into care while she recovers. Trying to put things in place now will help her get some much needed rest and able to cope for longer with him at home. Sadly she is heading for a crisis if she refuses your offers of help.

Of course you want to offer support but you can only do that if she will accept some small measures to help. Ask her what advice she’d give someone else in her position. Turning the tables often makes people thing more logically than they do about their personal situation.

Good luck and keep reaching out for help, plenty of experience here to offer virtual support and advice.

 

[sdmhred]

What a difficult situation for you all. Your mum is now clearly a vulnerable adult in her own right as she struggles to care. You’re right you will end up with an emergency situation 😢😢

I would be tough too. I would tell her the carer is coming and can’t be cancelled as she needs the help for her own health. Your Dad is going to the day care (she can go with if needed), No is just not an option.

Aswell as SS, can you alert her own GP to how much she is struggling and then not accepting the help. If they are helpful they may also tell her she must accept it.

Keep posting - many here will have been through it before

 

[Jaded'n'faded]

Your poor mum. I know it sounds mean, but maybe it's time to use some emotional blackmail?

Perhaps the approach to take with your mum, insisting she allows carers to help, would be to point out that she's on her knees and it's affecting her health. If she is so exhausted she's unable to look after your dad, he will have to be moved to a care home and she'll have no choice about it. I'd say play on the fact she wants him to remain at home and that having carers to help is the only way this can continue.

 

[Phil2020]

First off, in the context of alzheimers and dementia I suggest that promises not to put spouses, parents and so forth into care homes are a great example of the adage 'the road to hell is paved with good intentions'. Make the 'promise' if you must (and there are many good reasons for making the 'promise') but have your firmly fingers crossed behind your back when doing so. One of the many 'white lies' we all frequently tell to get us through a day. No-one knows the future - how bad the person cared for might become, how your own health or needs might hold up five years down the line.

Been said many times on these pages that things turn from what the person cared for wants to what he/she needs. The same is true of your mum, it's not about what she wants now but what she needs. She wants total control - perhaps that's been her character throughout her life? - but now needs areas where she can 'let go'. Maybe you can think of previous times throughout your lives where she has been willing to let go? Why? What happened? Utilise those experiences. Press on with getting carers in for your dad - yes, there'll be tantrums and tears and anger. We've all dealt with it to some degree at one time or another but it subsides. Can mum be distracted for half an hour by someone/something else while a carer 'sneaks' in & showers dad?

With some people you just have to stand back and let the disaster happen before they'll cede control of the situation. It's the last resort and may mean social services stepping in: that'll certainly change the dynamic of the situation.

Last but not least, if you haven't already done so, start the PoA (Health & Welfare) and PoA (Financial) conversation. Doesn't sound like it will be easy but it does sound like it needs to be done.

 

[canary]

I agree that it will reach an emergency situation if your mum doesnt accept any help. You might, therefore, want to research care homes in your area so that you know what they are like when the emergency arrives

 

[Ladywiththebaby]

Has your mum had a carers assessment? If not you need to contact Social Services and arrange it. Your dad probably needs a care assessment too.

It is hard getting people to accept help and I can see you’ve tried the gently, gently approach which is proving to be frustrating and not getting both your parents what they need, not necessarily what they want!

I don’t think anyone should put pressure on others to agree not to place someone into a care home. Sadly desperate people do desperate things and it sounds like none of you are in a position to care for him full time anyway.

Sometimes you have to be tough with your mum, explain to her that if she doesn’t accept help now, if she’s taken poorly, your dad may well have to go into care while she recovers. Trying to put things in place now will help her get some much needed rest and able to cope for longer with him at home. Sadly she is heading for a crisis if she refuses your offers of help.

Of course you want to offer support but you can only do that if she will accept some small measures to help. Ask her what advice she’d give someone else in her position. Turning the tables often makes people thing more logically than they do about their personal situation.

Good luck and keep reaching out for help, plenty of experience here to offer virtual support and advice.

Thank you. What would a carer assessment or a care assessment give either of them? I’m so disillusioned with the NHS or Social Services to do anything useful!

 

[Ladywiththebaby]

First off, in the context of alzheimers and dementia I suggest that promises not to put spouses, parents and so forth into care homes are a great example of the adage 'the road to hell is paved with good intentions'. Make the 'promise' if you must (and there are many good reasons for making the 'promise') but have your firmly fingers crossed behind your back when doing so. One of the many 'white lies' we all frequently tell to get us through a day. No-one knows the future - how bad the person cared for might become, how your own health or needs might hold up five years down the line.

Been said many times on these pages that things turn from what the person cared for wants to what he/she needs. The same is true of your mum, it's not about what she wants now but what she needs. She wants total control - perhaps that's been her character throughout her life? - but now needs areas where she can 'let go'. Maybe you can think of previous times throughout your lives where she has been willing to let go? Why? What happened? Utilise those experiences. Press on with getting carers in for your dad - yes, there'll be tantrums and tears and anger. We've all dealt with it to some degree at one time or another but it subsides. Can mum be distracted for half an hour by someone/something else while a carer 'sneaks' in & showers dad?

With some people you just have to stand back and let the disaster happen before they'll cede control of the situation. It's the last resort and may mean social services stepping in: that'll certainly change the dynamic of the situation.

Last but not least, if you haven't already done so, start the PoA (Health & Welfare) and PoA (Financial) conversation. Doesn't sound like it will be easy but it does sound like it needs to be done.

Thank you. Thankfully POA is all sorted as was done in diagnosis!

 

[Ladywiththebaby]

I agree that it will reach an emergency situation if your mum doesnt accept any help. You might, therefore, want to research care homes in your area so that you know what they are like when the emergency arrives

Yes, my sister and I have decided we will go and visit some care homes so that we feel slightly more prepared!

 

[Ladywiththebaby]

Thanks all so much - some really useful replies and it’s so good to know that I’m on the right lines. I wondered if maybe you would all say we have suggested too much too soon/all at once. So it’s reassuring to know we should keep trying. Thank you.

 

[Kristo]

I really feel for you - I am in a very similar position with my own parents. Dad still has no awareness of his condition but can do absolutely nothing for himself and incontinence has started.

I arranged a home support agency to visit today for an initial assessment and he was NOT happy. And Mum sat there saying they don’t really need any support with anything!!

At Christmas she was in a similar frame of mind to your mum, talking about it being time for respite, but now she is backtracking again. We have a tour booked at our local care home next week, but she wants me to cancel it. I want to book Dad into Daycare for a trial, she thinks he will “kick off” if we try to take him there.

We have PoA, he has had diagnosis for over 3 years and a review last year which said he had progressed quite a way and we should be looking at respite. He hasn’t been assessed for mental capacity yet so I don’t know if we can “force” him to go to a care home for a couple of weeks to give Mum some respite as he thinks there is nothing wrong with him!

I don’t know what else to do, though I think I’m at the stage of asking Social Care to do a care needs assessment (both parents will hate it) but as Dad will be self-funding I am worried that they won’t be interested.

This disease makes me so mad, everything is so complicated; if it were cancer there would be services falling over themselves to help. Friends, family and neighbours would all be asking what they can do to help but mum has shut everyone out, even if they wanted to help, which I don’t think they do because Dad really is so rude and horrible to be around now .
On my good (strong) days I make all the phone calls, form filling etc but on my bad days I feel like I am betraying them both just by telling anyone that Dad has dementia.

Let us know how you get on - I think, like me, you’ll end up being cruel to be kind…. it really is about what they NEED not what they want, but some days it’s easier to be strong than others! Good luck x

 

[Chaplin]

Thank you. What would a carer assessment or a care assessment give either of them? I’m so disillusioned with the NHS or Social Services to do anything useful!

Yes I know how you feel, but engaging with them now means you will have some systems in place should an emergency happen. After my mum and dad had their assessments we had a social worker appointed who helped us access a Day Centre for my mum twice per week to give dad a break, she was picked up and dropped off by community transport so it meant dad had two whole days to do what he wanted. As things progressed, a lady used to come and sit with mum one afternoon per week, doing puzzles or something similar while dad could go out for shopping or coffee.

Look none of it is a magic bullet and sadly the social care sector in the 4+ years since we were getting support has declined, but, you won’t know until you try. Honestly, to me it sounds like your mum is already at breaking point so someone independent of the family maybe able to convince her that she cannot continue as she is without her health and wellbeing affected.

Carer's assessments - Social care and support guide

See if you can get support from your council, such as extra money or a break from caring.

www.nhs.uk

It’s just a suggestion and I’m sorry if you feel it’s a waste of time but was just offering a practical way to access additional support.

Hope looking around some care homes helps you see that there are some good ones out there. We had one bad experience and one excellent experience where mum spent the final 2.5 years of her life. She sadly passed away just before Christmas and it was like a second home to her and her family.

 

[NickP]

I'm sorry to hear what you're going through. It reminded me of how things were with my parents a couple of years ago. My dad has Alzheimers & mum cares for him.
Dad didn't think anything was wrong & mum was very reluctant to accept outside help.
We started by suggesting a friend of a friend to come and do a bit of cleaning to help mum - mum found this easier as it wasn't a carer. The lovely lady gradually suggested sitting with Dad sometimes so mum could nip out. This helped mum to see how helpful it was so we introduced a companion carer, who initially came for a cuppa and chat with them both, and built up to taking dad out. This is now twice a week.

We did have a bit of a crisis with dad's behaviour at one stage & social care became involved - they put in a carer one morning a week & mum goes to do the shopping.

We did, as others have suggested, talk to mum about what would happen if she became ill from not having a break - who would look after Dad then? That helped her to see she needed to recognise her own health too.