To despair of my mum

[Fizzyrosie]

My Dad has dementia but he's still himself. Forgetting stuff but managing to talk, dress and still cracks jokes. He's like a big toddler really but he does seem to be going downhill quite fast. My mum has always been hard work and they've always argued. She does a lot for him but often gets frustrated at him. I go round at least once a week to help, often twice. He often seems scared and talks of mum shouting at him.
I work full-time and so does DH. I manage a team and it can be stressful. We have one amazing DD who is 12. And a dog. Life is busy.
Tonight has been awful. My mum thought I was coming round today (misunderstanding) but I had to go into the office and couldn't. She couldn't reach me (as I was leading a big meeting) for a few hours. I texted when I could.
She was so angry with me when I did call in the evening. She'd obviously been drinking. She was shouting saying I didn't care about my dad.
I went round and she was so drunk she could hardly stand and collapsed. My dad was so worried. She ended up vomiting and I got her in bed eventually. She kept saying she can't cope and that my dad hadn't loved her enough for her to 'do this anymore'. Thinking I might need to reduce my hours to do more of the caring, give my mum a break, at least in the short term but my DH isn't keen. We struggle to get everything done as it is. They are about to move house (selling a second home) as my mum wants to protect the assets rather than all of it going on my dad's care. Just feel so unprepared for all of this.

AIBU to despair of my mum but also to get real and start to explore flexible working

I would say get paid carers in, but it sounds as if your Dad is fairly functional if he can still dress and so on. My mum has paid carers 4 x day and it costs about £1,800 a month.

But carers visiting for half hour or 45 min visits really only give medicine, help with dressing, serve meals. Your Mum would still be tied to the house most of the time.

If they have a decent spare room and bathroom in the new house, maybe consider a full-time live-in carer. This is more expensive but probably better value in that it would give your Mum more of her normal life back.

If your Mum won't spend on this, make it clear you can't fill the gap.

You can visit your local GP surgery and ask for leaflets on dementia services in tbe area. We had a day centre about 8 miles away which Mum was booked into for about 5 hours a day once or twice a week. Cost was about £30 per day plus transport. There were activities, talks, lunch, visits by musicians and so on. Best to start these things early on, as once doubly incontinent, people usually can't attend any more (too much work for staff/volunteers). Sometimes local care homes offer this too. Really hard to find out about until you start asking around. Adult, Social Care, Libraries and even Hospital Discharge team may have lists of local services.

There are other clubs/dementia cafes your Mum could go along to with your Dad, where he would do activities/music/exercise and your Mum sit with other carers for coffee and chat.

Or perhaps a volunteer visitor scheme to come to the house for an hour a week and chat to your Dad or.do hobbies with him. A local church does this, but there's also a secular scheme.

I think there are dementia choirs, art groups, football, cricket, bowls etc as well. If your Mum doesn't want to take him,there might be a community transport scheme.

Building in a couole of these a week might help your Mum and gradually encourage her to see that Intervention is helpful and that different things will needed as your Dad's condition progresses.

What happens if you own your home jointly and your spouse needs care? Presumably they can’t make you sell the house in that case (as you need somewhere to live)?

If there is any way that you can avoid using your holiday to care for your father please make sure you do that. If you get more involved you are going to need to look after yourself. Believe it or not you can end up in the state you have seen your mother in. That is how hard it is to care for someone with dementia. I have been there. My mother died many years ago and despite the fact that I loved her deeply it was a blessed relief for both of us. In many ways I am still getting over it. A couple of friends of mine died within months of the death of the person they were caring for. So I do hope that you and your mother are able to get help. It would be awful if you ended up having to care for Mum as well as Dad.

Can you get some help to come in, help with housework, or prepare meals.
Take some of the stress off her.

Or shes scared how she will support herself.

So your mum doesn't want to care for your dad but won't pay for care for him? Is she going to hide the money from the sale of the second property? Is she expecting you to do the care?

Really? So what will she live on when all the money is gone? Who will pay for her care?

I think whilst you want to help, you need to understand the limits of feasibility.

When my mum was ill I wanted to bend over backwards for her and whilst I heard people caution against it, I didn't really listen. But in hindsight, they were right, and I think that's where your husband is coming from.

Your dad is, very sadly, going down hill and it may be over a number of years. How feasible is it really to be involved to the extent your heart wants? That needs to be the question at each juncture when it comes to things like reducing your hours, moving him in etc.

I know uou haven't said about him movingnin but at some point your heart will tug these questions.

I think the first poster nailed it.

Perhaps try and set a routine so you aren't all stressed by bouncing around different times and your mum knows when the next break is coming and hiw much support you can offer. Speak to support services.

But as someone else said, your mum needs to decide the balance between money and care.

She’s caring for him 24/7.

Can you imagine what that might be like?

For someone with dementia, the earlier you can get new routines and people in place the better, so that when memory gets worse they're already familiar. So this is the time to really push your mum into agreeing to carers and so on. If your parents aren't claiming attendance allowance and carer's benefits, they can get on that too.

How is your dad physically? It sounds like he's still probably able to dress himself and things like that, but maybe needs some prompting? Some people mentioned care homes but I don't know if you need to go down that route yet. If your mum could agree to a carer coming in once a day maybe (for now) to assist/prompt your dad with doing some things independently (washing, dressing, making toast for breakfast) it would get them both used to it for when they might need more carers, and also gives your mum the chance to pop to the shops on her own or just have a lie in. There are also lots of dementia day care type places, where your dad could go for a day of socialising and mental/physical stimulation and your mum would have time to herself. It can be really helpful to just have a bit of a break from each other tbh. Cleaners, laundry services - also could be helpful to relieve the strain.

It sounds like the main issue at the moment is the carer strain, rather than the dementia itself - have a look into local carer support groups too, for mum and yourself.

You have my complete sympathy, I am in a similar position except it's my mum with (now) very advanced Alzheimer's and my dad who is not an alcoholic but a complete narcissist and very, very hard work. I have helped them 5-6 days a week for the last 5 years and I have been at breaking point for some time now. As others have said, please do not reduce your hours, keep to your own schedule as much as possible to avoid your life being too affected by everything. I started off helping in small ways and before I knew it I was doing so much that I was close to a break down. People have no idea what dementia can do, not only the patient but those around, it has an insidious ripple effect.

As others have mentioned it's best now to get everything in place:- POAs, make sure wills are up to date and arrange for social services carers and patient assessments, get as much onboard now. We now have carers in 3 times a day and it has taken some weight off.

With regards to your mum selling the second home and protecting her assets, if any of it is in your dad's name it will be taken into account if he needs to go into a home, if she hides it etc it will be seen as deprivation of assets.

If you are on Facebook, I recommend the Alzheimer's and Dementia carers UK group, they have been a lifeline for me.

Good luck OP, dementia is a wicked disease and if I could go back I would have got in as much help as possible from the beginning to have protected my own sanity.

I am live in carer to my elderly parent who has vascular dementia. It is the hardest thing I've ever done. Frustrating doesn't even begin to cover it. Unless you are living it 24/7, it is impossible to describe the emotional roller coaster someone caring for a dementia patient is on. The exhaustion is mind numbing and the relentlessness of it and knowing that things will only ever get worse is completely draining.

You should be speaking to your mother about finding ways to support her properly. Start with respite for her. Then as a family you need to get a proper care plan for both of them sorted out. He also needs a DNR in place if it hasn't already been done. Practical help is what she needs.

If she's anything like my relative she'll be thinking that she didn't put up with 40 years of a miserable loveless marriage in order to stay materially comfortable, to then end up with nothing (or very little) because it's all been spent on the other person. Unless you've witnessed this play out you can't imagine the level of resentment and spite the 'unloved' party feels.

It's such a complex dynamic for wider family members to deal with because honestly both parties are right and wrong at the same time. OPs dad rightfully expects support from his wife but didn't put the necessary care and attention to the marriage to now be able to reap the benefit of mum's loving care. Mum rightfully doesn't want the expectation of caring about someone who hasn't loved her, but should have taken agency in her own life and left the marriage long before it got to this point. Both went along with the status quo (probably because it was easier than making a big change) and now both are suffering the consequences.

So you want to reduce your hours and impact your husband and daughter's finances to help your dad so your mum can keep the proceeds of the sale of a second house she owns?
No , bad idea

I also don’t think people realise how much care costs.

Your mum is right to want to protect some money for herself as well. People on the thread talking about night care etc. It’s very expensive and people’s savings get eaten through very quickly.

If he was to go in a care home, you are looking at over a grand a week, even for the less fancy places.

No they can't, though I've never been quite clear on whether they can put a 'charge' on the house to be paid at a later date when it is sold. Maybe different rules for different parts of UK? It sounds as if there are two properties in this case, one being sold, and that OP's mum is going to end up with a pile of money which she is desperate to protect. But once there's a diagnosis of dementia, money or assets can't be given away to family, as any future care assessor will have statements and medical notes going back as far as they want them.

Just to clear a few things up. My dad has been seen/diagnosed with dementia from the memory clinic in October and still waiting for a "formal" diagnosis as he needs a MRI which is tricky as he has a pacemaker. We are waiting for that before trying drugs but think we can move ahead with a carers assessment.

6/9 months ago he was doing the memory tests ok at the GP although we could see something was up. He'd be heart broken to be in a care home now and so would I. He still knows who we are, he can make himself basic food, cup of tea, can wash and dress himself, he does the hoovering. He is not the clever, thoughtful, observant, engaged person he was. He forgets words, he does some odd things, he asks the same things over and over, he gets anxious about stuff that doesn't make sense. He can't carry any of the mental load. I get that's all annoying when you have it all the time and my mum is not the most patient person.

Last night made me realised my mum and dad need a carer to come in a few days a week to help her. She can pay for that from savings now. He doesn't need personal, round the clock care yet.

Didn't really want to get into the financial aide of things but to be clear I don't want or expect anything from any inheritance and that's not what my mum is planning for either. They are doing the opposite of liquidation. She's selling to buy a bigger main house that she has her heart set on so she isn't cash rich. Then she can protect herself and have a nice(er) place to live and then use that to pay for her own care costs when the time comes. She knows she'll have to pay something for my dad and is prepared for this but if she is in a bigger more expensive house then she can't be made to sell it to pay just for his care the way she would if all the money was in the second holiday home property.

They should absolutely also focus on the assets, especially if they worked bloody hard for them! They can focus on both!

It's a very very hard job, being a carer for someone so I do sympathise with your DM. That said do NOT reduce your hours so that you can use those extra hours to help give her some reprieve from it all. You are not here to sacrifice yourself for your parents; your own career, home and relationships will suffer. As others have said, call Adult Social Services, get them to do assessments on both your parents to see what additional help they need and can obtain.

And your DM, trying to keep money rather than spend it on the care either he or she needs is a bit distasteful. I understand her desire to keep the money that they both likely worked very hard for but that money should be spent on keeping them both safe. (be careful with the Council; if they dig around in your parents finances (which they will) and find assets have been sold, they will consider this to be a 'depravation of assets' and will take the money into account, no matter how she may try to hide it.)

Definitely get the carer in sooner rather than later. We have private carers but in retrospect I wish we had gone with an agency because if any are off sick or holidays the agency can provide cover. We have to do it ourselves if any of our carers are off and believe me, trying to change the nappy of a double incontinent 82 year old who has the mental age of a toddler who is fighting with you the whole way is no fun at all (and very messy!).

The sooner the care is in the better.

A larger house may not be a bd idea if it allows your parents their own rooms and they arent on top of each other all the time. They may also be able to have someone live in to help with care at a lower cost.

Look into attendance allowance to help with carer costs.

I wouldn’t necessarily judge your Mum for struggling to care for your Dad (and it will only get harder as you know) but if she’s refusing to pay out for any carers/help so that she can save the money to use on herself at a later date, that’s ridiculous.
Clearly she’s struggling, but this is not on you to solve. It will ruin your life if you take on your Dad’s care.
Your Mum is not broke, she has the money and the solution is to spend it on outside help in order to not only improve her own quality of life but your poor Dad’s.
He should not be subjected to someone being angry at him and shouting at him all the time when he can’t look after himself, that’s plain cruelty.
She needs to stop focussing on her own wants and invest in your Dad’s situation. I can’t believe she wants to upsize house instead of getting carers in. She probably thinks you’ll do it for free and she can use the extra money saved.

I think your mum's reaction is very normal - but the drinking isn't, it's a worry. A drunk person can't take care of a very strong toddler, and if that's her 'release', then it's worrying.

I agree with other people that you should be looking into getting external care support for your dad, rather than stepping in yourself, because it is a MASSIVE responsibility and once you take it on, you're in to the eyeballs. Dementia patients needs specialist care, for their own comfort and enrichment as much as anything else.

I think that you are massively underestimating what she is dealing with.

Take a week of work. Move in with your Dad for a week while she goes on holiday. See how you're coping by the end of the week. That's her life.

Until anyone has looked after someone with dementia full time, I don’t think it’s possible to imagine how utterly exhausting it can be. I know I didn’t, until we had FiL to live with us.

Your mum needs regular time off, someone to come in and take over for a few hours, and preferably for a couple of days. You don’t say, but people with dementia are often up and down at night, too, waking others up, which means extra exhaustion on top. (FiL would be shouting and e.g. wanting to go out ‘for fish and chips!’ at 3 am!)
If that means paying for care, so be it.

It’s very hard, though, so I do really feel for you all.