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

Thats what I was about to say.
My grandfather became ill like this in his late 80s, and he and granma were a most devoted couple, married for over 60 years. But as he declined and became very lost to himself, granma began to be very bitter and resentful, as though he had physically deserted her.
It came to the point that she couldn’t swallow her own negative feelings (directed really at God, I think) and my widowed Ma was required to move in and take over.

I think elderly people can exhibit deep emotions in a very heavily disguised fashion, alarming family with opinions and behaviour entirely out of character but apparently as their only means of venting about loss of agency, of choice. It must be agonising for them.
Old age is chock full of cruel jokes like this, and it’s important to be generous about our own reactive criticism of a relative who is stuck in a nightmare.
(I say that as one who struggled with that, vis á vis my Ma herself, much later)

Anyway about grandad: I think we kept him at home too long really, and both he and granma should have been spared prolonged pain and sadness, and grandad settled much sooner in the inevitable care home.
(My darling granma died not long after grandad, having pretty much turned her face to the wall. I think her spirit was exhausted by the years of living with poor grandad after his lovely old self had retreated back to WW1 in his mind)

it must be exhausting and frightening for her.
If there was a misunderstanding about you going there, she could have been really relying on an extra person and it was all just too much.

For sure she shouldn't be shouting, but there is only so much one person can take, she is not a trained carer

You need a care package in place, or he needs to go to a care home. Your mum shouldn't have all this extra stress in her last years. Harsh? yes. But also true.

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she is trying to "hoard assets" for her own future.

tbh i would investigate the feasability of them getting divorced. And he goes into a care home paid for by his assets.

The assets should probably be split 50:50. She should be thinking about how she will cope on her own in a much larger house with all the associated higher costs for running such a house and her potential care needs. The upfront costs in moving are high too and she'll likely lose a chunk in Stamp Duty too. It isn't a particularly sound idea. I would suggest she takes specialist legal advice with regard to care funding and asset deprivation before she does anything.

She can ring fence her 50%, but she should be aware that both of them moving to a larger house, especially once the medical diagnosis has started, to avoid care costs will likely be seen as deprivation of assets and the LA is legally entitled to place a lien on the title if they are unable to self fund. Basically, they'll need to run through his portion of savings until they meet the threshold for funded care.

Also, if he needs residential care at some point and have to rely on LA to pay for it as there is no spare cash, not only will there likely be a lien, but there will be little choice in which facility he goes to. Having choice is important.

I must admit I did think of that too.

That’s it in a nutshell!

Many people are resistant to it, but it’s a good plan. As is putting your house in a trust.

I tried to look after my dad for so long myself as most care homes are dire. I know - I worked in them long enough. The amount of complaints I put in to the CQC and the amount of times I was sacked for doing so would shock you. I saw some horrific things, from the big chains (the ones that charge a fortune, the care is no better, but hey, they have grand pianos gathering dust in the foyers and a cinema room that none of the residents give two shit about), to smaller ones. More money on a better looking care home doesn’t offer better care. Infact, some of the better ones I worked in were mainly full of LA funded residents. Tiny rooms and peeling wallpaper, but they sometimes had managers who cared more which meant a lower turnover of staff and people working there because they wanted to, not because they had no other choice.

Dam fucking right I’d protect my assets anyway I could not to line a care homes pockets.

but of course OPs mum needs to protect her assets. Or who is going to look after her in the future?

There need to be sensible discussions when people are feeling relaxed. Otherwise in 10 years time OP is going to be here asking if she is BU not to reduce her hours to care for her mum because all the mum's money has gone on caring for the now deceased DH.

Honestly they’d be better having the cash to be able to pay for the best care possible.

I do agree with all this, but also, to the OP, if your mum has always been difficult, it is MUCH harder to dig deep and find the compassion reserves to give grace. My mother is difficult and demanding when present and (thankfully) mostly absent. I have already had to dig deep to find the grace and compassion to maintain a smooth adult relationship with her. She has been hard and selfish through choice when she could have chosen to be nicer and more supportive at little or no cost to herself. And I have also needed to use a great deal of actual resource, meaning I have a much, much smaller reserve to support her as she ages even if I wanted to prioritise resourcing her. Which frankly, I bloody don’t.

It feels like if she had not been intentionally unsupportive and a right bloody selfish madam in my middle age, I would not only have not drawn on them, but been able to build significantly more resource and reserves, just from fewer demands, let alone a little support. I am burnt out partly through her choice to demand from me when she could have given. (I could have said no. I didn’t simply because she is my mother, but I can see in hindsight how the efforts I made to keep a good relationship cost me dearly and were never reciprocated)

Obviously, I have a lot to unpack here, and perhaps you do too? I know the person needing care is your father, but possibly you feel that your mother has been difficult enough for a lifetime already. I know there isn’t much you can DO about it, but identifying and acknowledging it might be helpful.

Caring for someone with dementia is very hard work, they are unpredictable, sometimes lovely but also massively frustrating. It sounds as if your parent's marriage wasn't that happy from your DM prospective and now your DF dementia is making her deeply upset, she's drinking to try and blot it out- she's faced with years of caring unless he goes into a home and the financial resources for her last years are now under threat for that care home. I know she could be behaving much better but I do feel for your DM, she feels trapped and unhappy

Your poor father

moving house and all that upheaval will be utterly derailing for him and he will deteriorate.

He needs steady sober care

Ultimately, it’s completely inappropriate for one elderly person to be caring for another elderly person. They can’t cope. And the stress comes out in anger, bitterness & resentment.

But in addition to this an issue that is not recognised is that most elderly people have some degree of cognitive decline, even where there is not diagnosed dementia or cerebral small vessel disease etc. This can affects their mood, emotions, behaviour and character as much as their thought processes and memory. It’s not simply about loss of agency or inability to cope it’s also that their brains have deteriorated with age.

Has the op ever confirmed ages?

And, with my healthcare hat on, GET IN HELP. Virtually any functional adult has the basic capacity to provide basic care for your father. Only your mother can be a wife to him. Only you can be a daughter. Outsource, whatever you can and conserve your capacity to do what no one else can. Don’t waste it on doing the washing and making sandwiches.

There is so much pressure on women to ‘care’ and so much conflation of ‘care’ with ‘domestic work’. They are not the same thing. (I don’t even like calling it care. Love is not measured in hygiene, nutrition, clothing or medical assistance. And hygiene etc can be maintained very impersonally and uncaringly by a loved one or very caringly by a stranger. It can even be used to taunt. Impersonal is better than that!) You may want to consider keeping your hours and buying in help.

Your father is, sadly, only going to get worse. In unpredictable ways and at an unpredictable rate. Getting in help before he desperately needs it builds familiarity and capacity so that new people become familiar to him and skilled at caring for him in the ways which matter to him while he can still advocate for his preferences. That’s very, very valuable. It will help you and your mother feel less alone with it, and possibly bring a little objectivity to an emotional situation. It could be a long road and you don’t know how long your reserves will have to hold out for. Look for help to come in, but also groups and activities to go out for. (I’d be beside myself with no time alone in my house if I had caring responsibilities. And also if I couldn’t go out without or have time apart from someone who obviously resented caring for me, even if I understood I was unintentionally hard work and knew they loved me)

There are also genuine concerns‘s about your dad’s well-being, you need to act on those. It sounds to me like your mother is acting abusively. While that is absolutely understandable, because dealing with. dementia can be unbelievably taxing and frustrating, that doesn’t excuse it. Your father has the right to freedom from abuse. He is the most vulnerable person in this dynamic, needs the most protection and his needs come first. That does not mean I discount your mother’s needs, just that he is more vulnerable than she is and needs your advocacy and protection more. I would genuinely consider some sort of virtual monitoring. I would try and get it in tactfully, or via a third party, in deference to the difficulty of your mother’s situation, but I would also make sure she knew it was there as a deterrent and an incentive to manage her own behaviour.* It’s astonishing how the frequency of abuse declines in line with the likelihood of being Witnessed. It will improve your father’s wellbeing not to be subject to verbal abuse And to feel safe, and I imagine your mother doesn’t feel great about it. It will prevent escalation and give you peace of mind. I don’t know what’s out there these days, but technology for his benefit, like wandering monitoring, could definitely overlap into quality of care monitoring. Even if it’s just something that can be activated remotely and you don’t. In tandem with this (because it IS incredibly difficult) I would look at support for you mother. Therapy, groups, breaks, peer support etc. it’s HARD for women of that generation, who often had the dirty end of the stick with both being expected to work outside the home AND not being able to expect much help in it. She likely resents your father for exploiting her, and he likely did and doesn’t acknowledge it because it was normal and doesn’t see what he can do about it now. That doesn’t make it any easier!)

*My own mother behaved abusively when she believed she was unwitnessed. Never in front of anyone else. She claimed this was excusable and unavoidable, because of the intensity of her feelings. Since I let her know I have cameras running 24/7 there has been no abusive behaviour. A truly remarkable coincidence. I‘m so surprised.

He is the most vulnerable person in this dynamic, needs the most protection and his needs come first. That does not mean I discount your mother’s needs, just that he is more vulnerable than she is and needs your advocacy and protection more.

I fundamentally disagree. I think a much more productive perspective is that there are 2 vulnerable people with varying levels of care needs. It’s not ok to label one as abusive because they simply cannot cope with the needs of the other. They are both suffering. DF needs protecting from DM’s distress and frustration; DM needs protecting from DF’s high maintenance care needs & unpredictability. Support for the mother actually takes the form of care for the father. Getting appropriate care for DF will help both of them.

Subjecting a parent to surveillance is inhumane frankly and arguably a breach of human rights. If it’s come to that it would be preferable to either have round the clock care or separate your parents.

Late seventies.

Is it wise selling their home and moving to a new property where it will be unfamiliar to your Dad ? Surely he’ll be happier in a house/garden/area that he knows and is comfortable in.

it’s A difficult situation, so look after yourself and insist on paid care since funds are available for this.

Look into transferring the marital home from joint ownership into ‘tenants in common’. Too late now for the OP’s parents as her father is suffering from dementia and both parties would need to have full cognitive function for this to happen.
DH and I did this a few years ago when we retired. Research it online to gain a understanding and then see a solicitor.

I may be way off the mark here but I suspect the OP’s mother may be planning to sell holiday home and marital home and have the new house in her own name in the hope she can protect herself financially.

I would be having a serious discussion with your mum and if necessary involve a solicitor to disabuse her of the possibility of this happening (if this was indeed the case).
Its absolutely hellish having to manage so many aspects of your ageing parent’s lives and their delusional solutions. I’ve been there and done it and it almost took me to the very edge of retaining my own sanity whilst holding down a stressful job.
You have had so much good advice telling to take care of yourself and don’t end up becoming a full time carer for both.
I truly wish you well. ❤️

She’s struggling and needs support. Carers would be my first suggestion.

Yes, and I was young, healthy and strong when helping with someone with dementia. It is absolutely awful. Very little support (did you look at attendance allowance-I know it's hardly anything, but maybe some help), and a lot of us don't want to put family in care homes for a variety of reasons, but it is very, very hard.

It is probably not realistic for you to take on more of your DF's care, especially as it sounds as though your DF is deteriorating fairly rapidly. Would getting carers from an agency help? That is usually the first step before residential care which may be likely in the future. TBH in your position I would start looking at local care homes that specialise in dementia as that is likely to be needed at some point. If your DF has sufficient capacity get POA sorted, maybe in your name if you do not trust your DM to do what is best for him. I think you should forget about protecting assets, carer visits or residential care will have to be paid for.

Just to add, the house move is a crazy idea. A man with dementia will not cope with it well and will probably be even more confused in a new bigger place, quite apart from the fact that your DM is unlikely to be able to cope with caring for DF as well as packing up their current house contents - which will also add to DF confusion. The sale of the second home can fund care. Your DM probably knows all this subconsciously at least, hence her recent distress and demands on you.