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

Which is only going to get worse, likely over multiple years. She’s grieving and perhaps she’s not dealing with it brilliantly but she deserves compassion.

Problem is, your mum is also elderly and at risk of declining health herself. Especially if she drinks - that puts someone at high risk of dementia/stroke/falls. They would both then be vulnerable people needing care while living in a house together - and that would be you and DH plunged into one of the most stressful predicaments imaginable. If you read the 'Elderly Parents' thread here, you will see how common the 'fall-decline' trajectory is.

Look into a private carer rather than a company. We had a private carer for my mum, you can search private carers near you and see reviews, dbs and insurance.

Tragic situation for you all.
DM could get some relief by employing a carer a few hours a week to do nice things with DF while she gets a break. Its a good use of the family money.
Don't reduce your hours to help out. Keep yourself relatively unstressed to offer support in other ways.

If they are well off enough to have a second house, can that money be used to reduce the pressure on your mum by employing carers? Don’t dive up your work-your parents have money which can go a long way to help.

Living with someone with dementia is 24x7 and as much as practical (carer) support helps it doesn’t provide an emotional break. The prognosis seems relatively new and will hit hard that the future you planned isn’t the one it’s going to be and your mum is staring into the abyss.

If she is open - have a conversation about what support is needed and plan around that.

'Imagine' being the operative word.

Hi. I feel for both you and your mum. My mum has dementia and Alzheimer’s and also bowel cancer. My sister and I do all her care around full time work but our families are grown up, I don’t know how I would have managed having a younger child to care for too. It’s too late for us to get carers as to mum it would be strangers in her house every day. My advice would be to try and get carers sooner rather than later, not only to give your mum a break and you peace of mind, it will also become a routine for your dad while he hopefully still has the capacity to see it as part of his daily life. Not sure whether you qualify without a diagnosis but there are benefits available. Maybe your local council benefits helpline will be able to help. Aged concern were a great help to us too. Sending you love. I know how hard this is. xxx

I’m so sorry OP, I’ve seen both my PIL go through dementia and it’s so hard on the family. I would say your DM drinking is a cry for help, in her own way she is saying she can’t do this anymore and as much I understand that you are upset at what happened last night I can understand her needs too.

I don’t think long term that you cutting hours, using holidays etc will have a big impact as your DDad is likely to need more and more care, you don’t realise it at first as you just cope day to day but when you look back over a period of time you notice deterioration.

Have you looked at local groups? Most areas have dementia care day groups, transport can usually be provided.

Also your DM may be entitled to respite care of 2 weeks a few times a year which might help her rest a little.

Social care should be able to do an assessment and advise from there, I would say that unless you ask for help you won’t receive any, you and your family will be left to manage and that may not work well for any of you.

I think some of the above may be means tested and you may have to pay towards it but if the funds are there I think it is wise to use some to give your DM and you a rest.

Agree with this. Also, some people just find it too hard to live with a spouse with dementia, even if there are carers coming in to help. So I 'd prepare yourself for this - it may be your dad would be better off in a care home, sad though that is.

Please get social services involved and look down the care route to take the brunt of the care rather than yourself if you can. It's very very difficult being a carer and I don't recommend it having helped look after others with dementia.

Your mum is suffering, its very hard being there 24/7 for your dad. If you can, when you do go around on your normal visits, tell her to go out with friends or go get her hair done - anything to give her a proper break. It can really help balance things. Am sorry about it all, it's a horrible disease and tough on everyone.

My DM has dementia, early days, but it is relentless. She doesn't live with me but I visit every day. It is driving me to despair. I'm sure I would be in an alcoholic heap if I had to live with her, it is so hard to watch the person you knew disappear before your eyes. Also you probably see the best of your dad, my DM can put on a show for my DH, other visitors, I tend to get the crap.

Get carers. I know financially moving to the big house to safeguard assets might make financial sense, but probably will fasten your dad's decline and then how will you pay for care if all money is tied up in property.

Your DMs plan sounds daft and introducing avoidable stress at a bad time. Your DF will decline more quickly with the upheaval of a move and new surroundings. The bar to get someone assessed and into a care home paid for by the state is very high with dementia. Honestly she needs to keep money to throw at carers to make her life tolerable now. She may not even need to go into a care home in the future. It makes me crazy when elderly people try to keep all their money when easing life and getting in care when needed is what it should be used for.

I think you might be drinking a bit too if you were looking after someone with dementia 24/7. The man she's lived her life with is now 'a toddler' at best and it's only going to get worse, her life is totally taken up with looking after him, it's a truly terrible position to be living in. On this day she was hoping her daughter was coming to help and give her a bit of a breather, but she didn't turn up, a bit of sympathy wouldn't go amiss.

OP, your mother’s 100 per cent right for not wanting all the money to go on care.

That’s a disaster for the family cos the next two generations can’t make money these days and it won’t cure DF.

Oh, and if DF’s still mobile he might have 15 years to live at £100,000 plus a year = £1.5 million care bill.

@Supersimkin7 so what do you suggest?

Attendance Allowance is not means tested and could help pay for anything they need, cleaner, someone to be a companion to your Dad while your Mum sorts things, eventually someone to help shower and dress him.

Your Mum is under particular stress atm with house move and all (whatever we think of the wisdom of that), it is unnerving once you retire and what you have will only ever deplete (even if you are well resourced it feels more precarious than a job and an income you feel in control of) and she is seeing her life with your Dad being no help and more and more of a challenge.

But it isn’t ok to be shouting at him and making his life a misery and frightening him.

I am wondering what support there may be for her?

Your dad needs a care needs assessment from social services, and your mum a carer's assessment. Call the adult social care team. They'll have seen it all and are not quick to jump to assumptions eg about stress-related drinking.

Yanbu to despair but Yabu to change your working life if it’s not right for you. I feel sorry for your mum as she’s obviously finding it so difficult but she’s not coping and treating your dad badly so something needs to change. I don’t know much about carers/homes or other professional help but it seems that’s what is needed here.

Can you ask your mum what it is she is struggling with exactly? Is she making too much work for herself? Could she pay for a carer to come in or rest bite?

Your dad sounds sweet.

Sorry to be harsh but your reducing your hours/ quitting your job is about as helpfull as tit on a bull. All that will do is push the emotional and financial hardship into your family too.

And what @DeathStare said.

You are thinking about going through with this and cant work out how you will cope. Your Mum is looking at her life shrinking down into the role of caregiver with no plan of action or timeline of how things will change or end in sight.

You are "popping" in to your Dads home for short periods of time and if he likes you he will be "switched on" to keep you happy, the friendly loveable toddler who is all smiles and wants to be friends.

On the other hand your Mum also has the stroppy toddler, a full strenght adult who can and will say no. Who is more and more focused on his wants and needs with an ever reducing ability to even recognise that your Mum needs emotional support.

Have you realised that she was having a breakdown because you did not turn up to give her that couple of hours of breathing room? You are thinking of leaving your career to help him how trapped by love and obligation do you think she feels?

Why should your Mum be expected to be a full time 24/7 caregiver and spend 100% of the joint assets on your Dad? Is that fair? What is the plan for her "Old Age" care?

The very best thing you can do is ask your Mum what she wants to have happen in the future. What help would she need to keep your Dad at home or should the discussion be about carehomes and funding plus the division of assets.

If and only if your Mum is still ok with being his full time carer should you begin to look at what support is needed to manage your Dads condition.

The starting point of your assessment is that your Mum is not a carer but rather he lives alone. What is he able to do?

What is he like at night is he sleeping through or up and down for toileting or just active.

What is he like during the day? Can he actually get up wash and dress himself or feed and hydrate or take his meds without prompting etc. Is he actually safe to be left alone for periods of time? Is he functional going out?

You should contact one if the organisations which offer support for his condition to see what they day-to-day advice they can recommend.

If your Mum is getting falling down drunk to unwind or to hide from her life or she is an alcoholic who cant cope she needs professional help to put a plan in place which works for both her and your Dad so you should call adult social services for an assessment.

You may note that I had not suggested you have a discussion with your Dad. You need to seek help for your Mum first.

And on the dememtia issue.

If they are moving to down size is the place they are moving to set up to allow for a wheelchair/hoists and two caregivers providing in home care?

Can your Dad actually cope with the massive change of a new house new location?

What if any legal protections have been put in place to allow your Mum access and manage his "share" of the assets and to protect her share? What happens if she were to die or be incapacitated heeself?
Etc.

Read some if the threads :

https://www.mumsnet.com/talk/elderly_parents

https://www.mumsnet.com/talk/dementia

to get an idea if what may be ahead for both of you.

I made a friend of my dad’s do this. She was constantly berating me over the phone, saying I must be too mentally ill to care for him, it was easy (I was mentally ill due to caring for him).

So she said she would come for a week and show me how she could do it all, she had been a nurse, so she said she knew what she was doing.

By the end of day two, I got a text to say she was leaving as she couldn’t handle him, hadn’t slept as he kept trying to escape at all hours, and I had to come back immediately or he would be left on his own. I never heard from her again after that, she was far too embarrassed.

People really don’t realise what it’s like unless they have lived it.

@Nightlight8 have you cared for someone with dementia? An adult acting like a toddler is not sweet, it is relentless, it is hard work, it sucks the soul out of the person looking after them 24/7. OP just sees dad like that for a few hours a week, when he probably will crack a few jokes etc. Hour on hour living with him will not be like that.

I feel for all of you because it’s a horrible situation for mum, dad, yourself and your DH and DD.

I was in a similar situation after my dad died, looking after my mum. I’ve always had a difficult relationship with her, she bullied my dad and me for decades. After he passed she vented at me. I was working full time, spent two evenings a week with her, spent Saturdays doing her shopping, cooking her meals for the week ahead, doing her laundry, ironing. Spent Sundays at hers, changing the bed, cleaning the house from top to bottom. It was never enough. I considered dropping my hours to do more for her but I didn’t. Mainly because she wouldn’t accept any outside help, refused carers or social services, wouldn’t entertain moving to a small bungalow, nothing. I had three years of this before she passed away. She refused to discuss a funeral plan, wouldn’t allow me to be power attorney. I had to sort probate and am now selling and clearing the family home. It’s been a nightmare and physically and emotionally exhausting.

If I can advise, please push for outside agency help. I should have been stronger, but decades of being controlled by her had taken its toll, and she still intimidated me, this tiny frail lady in her late eighties. She was my mum and I loved her. Please don’t do more, it won’t be enough. Please prioritise your DH and DD, and yourself. They’re your priority and your future. You can’t pour from an empty cup, look after yourself. I wish you well.

Yes it's my job role. I just wondered if OP mum is being a martyr type as she could be struggling to accept how her DH is now currently. Considered her dad dresses himself I just thought I would ask further to gain a full understanding.