Coping with elderly parents, dementia and an increasingly difficult father

[Koolaidhighlights]

I have written about my father in a few threads and taken onboard and implemented all the advice given at the time but things just aren't getting any better, in fact they are worse and I (and my sister) just don't know what to do anymore. Every day is a painful ground hog day.

My parents are in their 80's and mum was diagnosed with Alzheimer's 8 years ago. My parents have lived a very good life up till that point, especially my father. They have never had money worries, have been in good health, especially dad - he spent his life in a job he adored and then his retirement on the golf course and riding his motorbike, he had very few responsibilities and I now realise that was simply because mum enabled this, she did everything around the house etc.

When mum was diagnosed in 2018 things weren't too bad for the first few years but as soon as 2020 came and we have the lockdowns every support network shut down and they became quite isolated so luckily, as I live just around the corner from them I stepped up and helped them every day but somehow, little by little I ended up doing everything for them - all mum's health issues were and are still organised and sorted by out me (she also has heart issues and breast cancer so I liaise with hospitals, doctors and sort out medications etc all the time), I was sorting out and doing their washing, changing their beds every week, going round at least 6 days to make sure they were ok. It was quite exhausting especially whilst having young teens at home and dealing with my own health issues.

But somehow I found several years had passed by and as mum's dementia became worse, as it naturally will, I was doing more and more and my dad happily allowing this and not doing much himself (his house is a mess if we don't clean it). My sister would come by a couple of times a week and clean for them but as she works full time she would say she was busy to do any more. I ended up giving up work 18 months ago but it wasn't sustainable as I could not live on carers allowance and the £50 per month my dad was giving me so around 6 months ago I returned to work, got a great team of carers in for mum and I now go to see and help my parents around 3 times a week, I stay for around 4-5 hours each time.

Although my dad hasn't actually said anything to me I know this has thoroughly pissed him off as his attitude changed. He expects family to drop things and help, he tells my sister that I obviously don't like coming to see them as I leave as soon as I can (FFS I am there 3 times a week for 4-5 hours at a time and I am constantly on the phone sorting stuff out for them, is that not enough?). He doesn't care that I am in pain from endometriosis and adenomyosis, suffering from menopausal issues and terrible gut problems - according to him, all my issues are just psychological! He told me this yesterday 'Pfff, there is nothing wrong with you, it's all in your head' - yet he is in tip top condition for an 85 year old and is very lucky to only have a bit of high blood pressure but constantly asks me to google this or that when he thinks he has something very wrong with him (prostrate cancer last month, skin cancer the month before.....).

I totally understand that he is angry and bitter that mum has this awful disease and it has controlled his life and freedom which is exactly the reason why my sister and I do as much as we can for him (sister stepped up recently and goes around 3 times a week too) but his life is a lot better than most of the elderly people I visit as part of my work, many of them are isolated and hardly see family members, my dad never has a day when he doesn't see someone, my sister and I go on alternate days, mum has carers in 3 times a day and mum's best friend and her husband visit every weekend.

Although mum's disease is causing us all such anguish, just watching her slowly dying is breaking me it's my dad's horrible attitude is breaking me and my sister even more, an issue we really don't need on top of this kind of grief. He doesn't see our pain, he tells us that because we aren't with it 24/7 we can walk away from it and forget, if only. He refuses to join any groups or meet up with anyone (although he has fallen out with most of his friends). There are groups in our village but he won't join them or go to any dementia cafes in the area. He has become so stubborn and obtuse and seems dead set on bringing everyone down with him and he has such a vicious tongue. I dread going to my parents these days.

I am sticking to my guns and my boundaries as recommended to me on my previous threads but I am still stuck in this miserable situation and feel at 53 my life is over too, it feels never ending and constantly going round in circles.

I don't even know why I am starting another thread about this, I suppose just hoping there are people who can understand because none of my friends do, they have either lost a parent from a quick disease or they have parents still well and active.

I thoroughly hate dementia and everything it does to families.

Oh and we have had SS in several times for assessments but as mum is well cared for by the private carers and my parents have substantial savings there is nothing they can offer. My dad also refuses for my mum to go into a care home, he did agree to respite but has backtracked over the last few days and is refusing this too.

We have POA but he is such a very difficult man to reason with. I am beginning to think he has very narcissistic tendencies.

I'm so sorry you are going through this. I can sympathise. I'm the same age as you with teenage children. My MiL has Alzheimer's but she's still living independently. Between us, my husband and I sort absolutely everything out for her. We ferry her around for activities, sort out carers, cook every day, do laundry, banking, paperwork etc. We don't live too far away and we both visit her separately every day, 7 days a week. Our load keeps steadily increasing as she declines.
But she's so narcissistic, ungrateful and selfish. It's soul destroying. And she's always been like this, long before dementia. She is absolutely blind to the huge sacrifices we are making for her. She lives in a retirement complex and never acknowledged (or notices?) that nobody else receives anywhere near the level of family support she does. She's rude and unkind and entitled all the time.

I've had other family members with frailty and dementia at the end of their lives who were so grateful for the help family offered, so I really believe it's not just old age that makes people like this, it's their underlying personality. My MiL has always been a narcissist.

I don't have any advice for you, only solidarity. I hope that you can manage to set some firm boundaries with your father. Do what you can, what you feel is enough and step away if you can.

I have put a time limit on things, a deadline when I'm going to be returning to the workplace. That means that some other solutions will need to be found. My husband isn't terribly happy about the change because it will probably involve residential care or live in care if she can afford that. I have to remember that she did a number on him growing up and it's very difficult for him to untangle the web of guilt and obligation sometimes. But i have to set boundaries for my own sanity.
Good luck @Koolaidhighlights you aren't alone dealing with this shit xxxx

I'm glad you have been able to step back a bit. You may need to step back some more.

From what you have said, it is possible your father is in the early stages of dementia. Being rigid and uncaring, lacking empathy, falling out with his friends, and constantly thinking he is physically ill - these could all be signs of dementia. Or of course it's possible he just hates what his life has come to, and he is taking it out on the rest of you.

Anyway, whether he has cognitive problems which excuse his behaviour, or he is just an unpleasant person, he is not going to change. All you can do is change your own behaviour and reactions to him. Ignoring is probably the best option.

He right that while your mum's illnesses affect the entire family, you do get to walk away to your own life. You have made a choice to be very helpful and involved in your mum's care. But it is a choice. It is up to you how much you want to continue doing. You don't have to enslave yourself to this situation.

I'm sorry you are dealing with this.

My mum has been lovely throughout her disease but she was such a lovely person before this, I'm sure dementia just amplifies a person's personality trait, mum's carers say she is one of the gentlest people they have cared for. My father is showing signs of cognitive impairment and I have already said to my sister if he does go on to develop dementia I just know he will be a complete and utter nightmare to deal with, there is no way I could care for him for years on end as I have done so for mum, it would break me.

I hope things improve for you ❤

Thank you. The thing is it's the guilt that stops me from taking further action to step away, it eats away at me at times. The guilt that in fact I can walk away from it and he can't but he does have more choices than many in his position, he has a lot of money and could employ more people to look after mum so he has time to himself but he refuses because he believes the government should do this because he has worked all his life, he very much digs his heels in with this belief.

I have already had the conversation with my sister as I am concerned about dad's cognition of late. He has always had a bit of a nasty personality trait but as his life has always gone his way it was kept under control, I just live in hope that he is being the way he is now as he feels trapped and stressed, I really don't think I could cope with him if he goes on to develop dementia, I just know he will be a nightmare, we would have no choice but to place him in a care home.

Hi OP, I’m sorry for what you’re going through - I’ve seen your other threads and it’s so difficult.
When you’re in the middle of it, it seems like it a nightmare that will never end. I used to daydream about running away from it all.

I helped to care for my lovely dad when he had dementia, he eventually died 2 years ago and while I miss him I do not miss how he was for the last 5 years of his life.

A bit like your situation my dad was the easygoing one, and my mum (now early 80’s) has always been more difficult and demanding. My dad put her on a pedestal and enabled her for years. She has only gotten worse with age.

I know in my heart that I cannot and will not do the same level of care for her that I did for my dad. It woud be a nightmare. She will just have to pay for carers, which she can well afford. If that makes me a horrible daughter, so be it.

I know you’ve already put in place boundaries, but I would say keep stepping back if you can - I read on here before that it’s better to feel guilt than resentment.

Your father will never understand the strain he is putting on you, and even if he did he’s too selfish to care.

I'm thinking of my in laws reading your post. That bit of distance helps me deal with my reaction to their behaviour. DH struggles.
FIL is very much a product of his time. Unfortunately he's been retired nearly 30 years and the world has moved on but he hasn't. Puts very little into the local community, expects to be treated like senior management in every sphere of his life.
Unfortunately the way it has tipped over the last few years has really started to drown out the positive aspects of their lives and interactions with us. Our kids really feel it, they just don't have the store of happier memories.

And yet they take every last miracle cure, every injection, tablet, operation. I find it really hard since I'm surrounded by 50 something's that just need a one off - knee, or HRT or thyroid deep dive and immensely improve 50 something quality of life.

I haven't got a solution but I hear your pain. I do suggest that because you won't 'win' you change the event, go for shorter periods, insist on a professional house cleaner doing more hours. We tried to frame this with FIL as a management thing that he could do rather than a failure on MIL to put the hoover around.

I remember your other threads OP.

Have you got any support from your local social services? Given your Dad's reluctance to allow your Mum into a care home, I would at least try to get them on board and advocate for her.

I'm sorry for the loss of your dad, it's such a difficult disease to deal with isn't it? So many unwanted thoughts go through your head the whole time, I don't want my dear mum to die but I also don't want her living like this anymore, it's no life for anyone and most certainly not for her. I hate myself for wishing her end to come asap but the truth is the years take their toll and watching someone slowly ebbing away and losing all their faculties over many years is hard going. I know my dad is losing his wife but my sister and I are also losing our mum and he just doesn't see that at all. The one person who always had our backs is no more, she went a long time ago so we are all grieving her whilst looking after her, it messes with your head a bit doesn't it?

I will keep setting the boundaries, as much as it hurts to do that it hurts more suffering front the physical affects of this shitshow and I need to think about my own health and future. We all do, don't we.

My dad is very old school in his opinions too, he seems to think that everything should revolve around him and he is entitled to it all because he is a man and is elderly. He doesn't see why he should pay out for anything because he has 'paid into the system for years', I try to explain to him that our tax system isn't a savings account, it doesn't work like that but he always knows best. I know that I am never going to change his thought processes on anything, he is too set in his ways now.

It is such a shame that it ends up affecting relationships, he moans constantly that my 18 and 21 year old don't come and visit him much but the truth is they don't enjoy it, they hate seeing their nan like that and granddad has become so nasty and says horrible things to them - my son is overweight and dad will call him all kind of names in the guise that he's just jesting with ds. He can not see how hurtful he is to people. The carers are used to him now but he's upset them a good few times and I've had to apologise, which I shouldn't have to do.

I am sorry you are dealing with this with your in-laws, it's hard going.

We have had them visit a few times but my parents have substantial savings and as mum has carers in 3 times a day they are confident that she is being well looked after, which she is tbh. The only help they have offered is a visiting OT who has given safety advise and we now have a hoist and various other equipment.

Apart from that they have confirmed they is nothing else they can offer. It's up to dad as he has the money to cover care costs.

Thanks for your replies everyone, it's just good to know you are not alone sometimes, it can feel very isolating dealing with this, none of my friends have these kinds of issues with their elderly parents, most are in good health still and independent.

I suppose that I am feeling especially emotional about things atm because on one side of my life is my dad, moaning constantly about everything and digging his heels in the whole time which makes life so hard and at the same time DH's friend is lying in a hospice bed with days to live. He's not even 60 and would love nothing more than to see his gc grow up and to enjoy a good retirement with his wife and I have to listen to my dad moan and moan and moan whilst I sit there looking at all these photos of the wonderful life he's had, all these places he's visited, all the fun events and occasions he's attended. I appreciate he's so locked in his misery now that he can't appreciate the life he has lived but it does irk me. I know I shouldn't think that way but I do right now.

I just don't know, I find the older I get the less life makes any sense.