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

Some people are just not cut out to be carers. My mother was very similar albeit without the drinking. There is a real risk of carer fatigue ( it’s a recognised thing) if she doesn’t get more support. She may have to be coaxed into this, change is hard.

Something to consider is asking locally about finding a really good care home that offers respite care. This not only gives her a break but can help with the transition to residential care if and when it’s needed. Some care homes also offer day care. Getting a really nice place can be much harder if the patient has reached a very low state. It’s better for everyone to consider these avenues before reaching crisis point.

Age UK have lots of information and getting SS involved may well lead to other agencies that can be helpful. I wish my mother had done all this much earlier.

Exactly this. They will also have information on day centres he can go to to give your mum a break. And signpost to various organisations.

When we were in a similar situation with my Dad he went to a day centre weekly, they went to a group once a fornight for carers and cared for, they went to cinema screenings, museum memory groups etc designed for dementia sufferers. There is a lot out there, it just isn't easy to find but SS will be able to sign post. Alzheimers society is also good. Through them they had a lady once a week who chatted to Dad in the house. Mum couldn't go out but it meant she could do her garden in peace.

Start the medication now - don’t wait for the MRI. If he’s been diagnosed by the memory clinic I think that should be enough? My mum had an MRI and it didn’t show any damage to her brain as you might expect to see, but she was diagnosed with Alzheimer’s dementia by the memory clinic within a few months. She started on donepezil, and it made such a difference - she seemed so much more like herself again. She’s now moved on to memantine as the disease has progressed, and again, it made a difference, although now symptoms that had disappeared are now reappearing again (hallucinations), which is just an indication that the disease is progressing further. There’s nowhere else to go for us with medication now, but the sooner you use it the better, it really does slow things down and make life better

She needs a long hard look at why that is. Very few people can cope with full time care of a spouse/relative. There’s too much past, present and future emotion and baggage involved.

She at least needs to let your dad use ‘his half’ of any joint money to pay for his care. Gate keeping the finances is abuse.

She’s tried to care so far and it hasn’t worked - this isn’t anyone’s fault. Caring is relentless and exhausting (I’ve seen it in my own family).

Don’t let her choose holding on to money over what’s best for him, and her as a result. Paying for care would be life changing for them both.

Definitely don’t cut your hours to help out more when they have the money to pay professionals. It would be incredibly selfish of your mum if she expected this of you, and your career might never recover.

This sounds awful for everyone. Please don’t be too hard on your mother, she’s clearly at the end of her tether. Suggest she see’s the GP. They can support your DM and they should know about a range of services available. You might even want to go with her, so you are informed.

Age UK Have a helpline and they can give advice and support.

You can also contact adult social care for help. Both your parents need support. A neighbour of mine pays for a wonderful lady who comes to them and sorts out life admin, shopping, cleaning, cooks a dinner for them and picks them up and takes them to clubs and day centres.

The help is out there. You don’t have to do it all. I definitely wouldn’t consider cutting your work hours.

Your mother needs to spend their money on carers what else would it be for? Don't go part time to become an unpaid carer you will be on call the whole time, affect your own family's finances and your husband is already opposed to it.you and she are not carers you are the wife and daughter

This is a great post. It sounds so difficult for you all, yourself, your mum and your dad. I don't have any personal experience but professionally work in adult social care and see the absolute strain it takes on carers looking after someone with dementia. It absolutey breaks people and something has to give. I'd contact adult social services as your first call. They can arrange an assessment, look at carers coming and in some areas, carers support can also be put in.

I think some people need to have compassion for the mum before jumping to the conclusion she's an alcoholic.

@Nightlight8 my DM can dress herself (but now might wear the same clothes for days on end), many days she can cook her own lunch, but sometimes leaves it in the oven and forgets to eat it, gets food out of the fridge to get ready to cook and then promptly puts it in the freezer rather than the oven and doesn't remember that she hasn't eaten and will get angry with me if I tell her she hasn't eaten that day. Forgets where she puts things and I have to spend hours trying to find them. Tells me she had had a phone call with someone and arranged an appointment for them to come that afternoon, when no such phone call has happened. regularly gets the day wrong even though we have calendars and clocks with day and date on them dotted around. Taking regular medication is a nightmare even with a pill box. Conversations are hard work, the list goes on. And I can be the evil person who is ruining her life

Caring for someone with dementia is incredibly difficult.

I would explain to your mother that she can’t protect the assets if she can’t provide the care herself. She needs to pay out for carers to come in regularly.

I wouldn’t go part time unless you are in an extremely good financial position, and have no misgivings about providing increasingly personal and stressful levels of care for your dad.

Your parents GP should be able to refer them to a memory support worker (or similar) who can both help them in making sure you Dad is accessing the community as much as he can, and provide some support and recommendations to your mum about how best to respond/react to your Dad.
Everyone (regardless of funds) is entitled to a care needs assessment by their local authority.
This will help identify your Dads support needs and see what practical support (likely private carers visits etc) can be put in place.

She doesn't have to put him in a home yet, she could carers in to take the load off.

She has my sympathy

Having a pacemaker doesnt impact an MRI, just needs a tech on hand to turn it into safe mode. Get the formal diagnosis so you can start getting all the help you can.

First, as other posters have covered that it’s a lot harder to care for early dementia than it looks from the outside. Your mum is now totally responsible for your dad in a way she never was before and she’s back in the same mould as she was when she had small kids. Secondly don’t underestimate the difficulty of being old and having to care for another old person - that is also much harder than it looks. Hence the anger and stress - it’s too much for her.

That said, this is a really dumb plan of your mum’s. They need a smaller house that’s easier and cheaper for her to run, with cash in the bank to pay for care. Unless your parents’ pensions are so generous that they can pay a starting point of say 20k pa for carers without blinking. Bear in mind 20k only covers 2 hours of care per day, what happens when it gets to 40k?

Dementia is one of the most expensive illnesses to provide for because it’s super high maintenance in terms of care but can go on for years. Your dad may well still be alive in 10 years but with significant cognitive impairment.

Can you really afford to go part time for 10 years?

I’d say you need to sit down with your mum and a financial planner and work out some ballpark level of care costs for the next 10 years and how they’re going to be financed.

Bearing in mind care home dementia costs are 60k-100k+ pa. Part time care may be appropriate in the short term and long term you might look at a live in carer.

Really insightful post.

I could have written your post OP.

Dad is drinking a bottle of wine a night to cope with mums vascular dementia, i think (he mentioned there were 15 bottles of wine in the recycling this week, and she doesn't drink). He has always liked a drink but was never every night. He can also be quite short borderline nasty to her when he has had a drink (verbally not physically) Mum, Officially diagnosed around April time, currently on Donepezil. Discharged from memory clinic back to the GP and that's it. Neither accept diagnosis.

I go round 3 afternoons a week and on a weekend, she doesn't seem that bad but,,,,,there is a lot I don't see which I am starting to become aware of. She wears the same clothes for weeks on end. I keep having to try and get her to wash her hair. Dad said she is getting showered and changing her underwear but I don't know if I can believe that. She has started picking her hands and face, to bleeding point, things that are not there but adamant she has bites. She does repeat her questions but can hold a good conversation. I have started noticing the later I go round the more confused she gets and sometimes struggles to get a word out.

She can't spell her name.

I have resigned myself to the fact that although i have always said I will do all the work, I'll move back in to care for her, it just isn't going to be sustainable.

I have a cleaner go in once a week to do general housework. I take food over, dad is still happy to cook but his memory is also going. They do eat out 2 nights a week at a little local restaurant they like.

They will not entertain talk of carers coming in so I am going to start looking for a 'home help'. I think they are more open to that.

It's a very hard and cruel terminal disease. I'd rather it had been anything else but this. I watched my nana and auntie die of this disease and it's so horrible.

Do you have a LPOA in place? As he is not yet diagnosed, it's imperative you get this in place now before he loses capacity.

We're not there all the time and you see a fraction. And it's so hard. I ring everyday but just can't be there and live my own life and own family. Realising last night / today that outside hep is going to be necessary for both of them soon. It's about safeguarding.

Sorry to here of your situation, sounds like you're doing so much. Even harder if they are in denial. Thankfully we're not in that situation.

Thinking of you, hope you're being kind to yourself too. There is no easy obvious answer. This thread has been useful but hard to read at times. LPOA is going through for my dad now, we've sent the paper work back pre diagnosis. Assistive Directive needs doing.

@sonoonetoldyoulifewasgonnabethisway my DM thinks the carer is someone who just comes in for a chat and to do some hoovering, doesn’t realise she is a carer as most days doesn’t think there is anything wrong with her. My DM gets worse in the evening, partly I think due to dehydration as she forgets to drink as the day goes on (although adamant she has had at least 5 glasses of water in the day)

Just to pick up on something from your update - the things he can do for himself, he can do in this house. When we moved Granny to sheltered housing, she lost the ability to make a cup of tea, because she didn't know where the kettle was. We hadn't realised that she only knew where it was in the previous house because it had been in the same place for fifty years.
I see why your mum want's to move, but please don't underestimate the effects of moving your dad on his cognitive abilities. Wishing you all the best, and your mum.

Frankly I’d be pretty fed up if I was looking after a husband that perhaps hadn’t treated me well when he was well. It’s a hard enough job for people that have had amazing marriages, I think you definitely need to look at care

@Fizzyrosie I started gently with a carer, so couple of hours one day a week, so DM could get used to her and the idea of someone coming into the home. She sees her more of someone to chat to and help with laundry etc.

Even this will give your DM a break. You can then build it up.

I am sorry your family is going through this. It is shit

They definitely need support and from appropriate people. A 'break' when you're a carer needs to look very different than an hour here and there but it's probably more important that it's regular. I feel for your mum and all carers. It's a tough, tough thing to do. And it's much tougher when it's someone you have a complicated relationship with.

You can only do what you can and your family is your priority. I'm in a similar situation where I've been through all the different permutations of what I can do to do more but ultimately I'm a sometimes-support-act and that's all I can be, I have my own family and that is my priority. You will probably feel guilty at times.

Your mum needs proper advice on options.

Also bear in mind that if your mum is sizing up to try to reduce savings in order to qualify for state care for your dad - that will simply be regarded by the Local Authority as deprivation of assets. They will calculate dad’s care costs on the amounts in place before the new house was bought - it’s known as "notional capital".

I used to be a live in carer( The Good Care Group) so I understand how difficult it is for everyone.
You can’t be reducing your hours or time with family because your mum wants to save money, it’s not fair.
Sit your mum down and talk about her not coping and griefing for a different life she had planned. Tell her you will support her to make new plans but make it clear you won’t be your dad’s carer, they are fortunate to have the finances from selling one of their properties. Help her look for some options for care.
I would also recommend some counselling. There’s a lot of grief and guilt that comes with this situation, she probably just wants to run away then feels guilt so drinks, gets frustrated with your dad, feels guilty then drinks.
I really feel for you all, good luck. 💐

@Fizzyrosie - I'm sorry for what you've been going through. Some of the replies on here have been less than kind. Dementia is a cruel disease and devastates lives many times over; I cannot imagine the despair and hopelessness you must be feeling, especially with your M's issues in the history and current picture. The best advice to begin with is to ask Social Services for an Adult Safeguarding Referral, but your parents may not comply with this, or mask the issues. For your own sake, I would advise stepping back as much as you are comfortable with. Very sadly, there often needs to be a crisis in order to prompt getting appropriate support on board.

Apologies if it's already been mentioned upthread - but have you got the POAs for both heath & welfare AND finance sorted? If not, it might be a good time to start those processes. ONLY if you want to - you don't have to do this, but it can be helpful as health and capacity decrease.

There is a really helpful space on MN for people in your situation, the Cockroach Cafe. It's full of wise, kind understanding folk who know exactly what you're up against - also a "safer" space than general AIBU - Cockroach cafe Winter 2025 | Mumsnet. Lots of good advice and a friendly, helpful forum here too: Dementia Support Forum.

Best wishes to you. x

Please contact social services adult care. They can come out and do an assessment. They may be able to set up your dad going to a day centre which will give your mum some respite. They may be entitled to financial assistance.

They can assess if they will benefit from carers.

I feel your pain - I am going through a similar thing. My mother in law has dementia and my father in law is a) bone idle and refuses to take over jobs that she used to do (ie cooking) which means I am either buying them ready meals or making them food. My DH works away a lot of the week and my SIL lives in NZ so it seems to be falling to me. I am working 22 hours a week fortunately so do have the time but have a daughter who has recently had a bad burn accident which means I am taking her to the burns hospital every week - a 3 hour round trip - my own mum who thankfully is pretty fit for her age but doesn't drive (neither does my sister) which means any running about also falls to me. It is exhausting.