How to face the next ten years without getting really depressed about witnessing parents dementia deterioration?

[falstaff1980]

I know I should feel grateful and there's a lot worse off people, but I still feel really low about what the rest of my life has in store. I'm about to turn 50, my mother has recently been diagnosed with Alzheimer's (my dad died last year), and now I can see I'm going to have a front row seat watching my mother's decline over probably the next 10 years, and then after that I'll be old myself and watching my own decline.

I do have kids, but I don't want to be one of these old people who are just vicariously living through their children and only talking about them with other people.

Sorry to lower the mode of the forum, but hoping other's might have faced this and found a way to feel alive again and be enthusiastic about things.

OP don’t despair. Try and make a plan for care of your mum. Don’t feel obliged to do everything yourself. Ensure she has carers and can attend a day centre. Do you have siblings who can step up? My stepfather had dementia and was in a home for the last few months of his life. My mum was his main carer before that and it nearly broke her.

I am over 60 now. I still work. I have also started an MSc degree part time. I am proud of my kids but I don’t live life vicariously through them. Life doesn’t end with a parent’s diagnosis or at 60!

I wish that we could have a discussion as a society about where we should be spending our money.

I know so many kids who are suffering because their schools are understaffed and the kids themselves are not able to access medical care or developmental/neurological tests that they urgently need, or mental health care when it all gets too much to bear.

I feel as though the NHS is throwing money at prolonging life, but seems to think very little about quality of life. I think it's what Wes Streeting meant when he said "Children are sicker today than the generation a decade ago. Adults are living longer, but falling into ill-health earlier in life."

I think that we need to think about this as a society. I don't think it's something the government or NHS can just decide for us.

It's an awful disease, with many awful moments towards the final stages, and I wouldn't wish it in my worst enemy.

However, it's not so bad for a few years.

Definitely funny moments too. My father lost his inhibitions in relation to suddenly being willing to talk very openly, after being a very reserved and private man. Going through old family photos with him dishing the dirt on everyone was an eye opener and hilarious (and solved an 'skeleton in the closet' that had confused and annoyed me since I was a kid).

He also very much stayed himself, polite and a gentleman, with a dry humour.

Even when he wasn't sure exactly who we were, he recognised us as people important to him, and was very happy to see us.

He took great joy in the family babies and toddlers. he'd always been a loving Dad and Grandad but in a slightly more stiff upper lip way.

It kinda relaxed him out of his more 'Victorian Dad' mode.

There are medications she can have if she has alzheimers as opposed to vascular or another type of dementia. Does she have those?

It's not all bad, you know. Dad lived alone with help from me and my sister and a cleaning lady for 5 years after his diagnosis and managed well

It was only after he fell and had to go into hospital and then fell again in hospital, and therefore was too long away from home, that the problems really started. He died 10 months after this at 93.

Home would always (until it didnt) re-boot his brain ....it was quite miraculous to see

I think we are living at a time when we say that adults lives only have value if they are fully active and independent.

If people have clearly and consistently expressed that they do not wish to live a life with a terminal illness that involves extensive dependence on others, I can accept that it might be cruel to keep them alive, especially if they're in pain and/or severely depressed.

On the other hand my elderly father in law, spent the last year of his life enjoying the kindness of staff in the care home and a friendship with one of the residents there. There was cat there who kept him company. He had a good appetite and visits from relatives gave him pleasure. On fine days he'd sit in the garden. I feel this was actually a happier period for him than the preceding year/s when he knew something was wrong and was anxious and struggling to suppress the evidence of his decline, when he would have 'accidents' and eat food that had gone off.

He knew that he was safe and cared for. Apart from some difficulties in his short final illness, it was a good end.

Maybe I've read this thread wrongly, @falstaff1980 ?
I thought you were looking for suggestions to keep yourself feeling positive at 50, even though you would be absolutely doing your best for your DM alongside.

I think it's so easy to completely drop the rope on our own projects and work / life balance when our parents and relatives need extra care. I absolutely know you can't be everywhere at once, but I applaud trying to ringfence little bits of your own life that don't get swallowed up.

In another thread, one of our regular posters hasn't even had a second to herself to acknowledge that her DS has gone off to university and process she's been empty nested.

I'm all for doing our best for the older generation but self-care is equally important.

>In another thread, one of our regular posters hasn't even had a second to herself to acknowledge that her DS has gone off to university and process she's been empty nested.

Totally, it turns out my student son didn't come to me with a serious problem he had because he saw me too stressed about my parents (in the months before my father passed away). I wish he had come to me, I could have helped him.

@falstaff1980 yeah we forget that our adult children still need us yet as they are often very astute and kind they try and avoid asking for support. It’s awful. I actually told my mother one of my kids needed some support and her response was “why he earns a fortune what could he possibly have to worry about?”🙄

One of my parents died recently after 4 years with dementia. It’s incredibly difficult and you have to be very clear with yourself about how much you can do. My brother has always lived at home (he’s 45 and has never moved out) so he bore the brunt of things, but I was also there three times a week. To be honest, I think my parent should have done into a home a couple of years after diagnosis but I was overruled and they eventually died at home after pneumonia.

It’s incredibly difficult looking after someone with dementia as there really is no respite at all. It’s not like cancer where people can have good weeks and months at at time, and it’s utterly relentless. If I ever get dementia, I will go to Dignitas or straight into a home. I will never let my child look after me - it becomes all consuming and it isn’t fair to sacrifice the quality of life of someone who has lots of loving left to do, on behalf of someone who has very little left.

May is correct. Old people often live in a cluttered mess and have lost track of what they have (so they keep everything). They often dont embrace technology so end up with scrappy bits of paper in all sorts of places. Mum wasnt that bad although she did tend to keep more than she needed to. Dad (they were divorced) was a bloody nightmare. House a complete shambles and until he had to move out into care he felt that it worried us more than it concerned him!

POA can be quite fiddly and take weeks to come through. Really really insist on this being done. Do not let parent pontifcate on this. Be more than bossy if they need help. Dont allow yourself to be drawn into the way they live.

And my biggest tip. Just do something and have it as a fait au complic. If they need something done just take it away and dont explain what you are going to do. They are very likely to disagree and you will be at it for hours going round and round in circles.

My dad had Alz for several years. I can honestly say that I found adjusting to the idea of diagnosis one of the hardest bits because I was trying to think about the whole potential journey at once. And you don't know how it will go. And it's not really like that, it's a bit like you don't see your hair grow, for me the changes are gradual or sometimes stepwise then a plateau.

For me it was mostly endless problem solving - what care alarm to get, what radio had suitable buttons, how to adapt the shower set up, how to get an OT visit, how to get the shopping during Covid, how to get them to appointments, how to get a blue badge...etc etc but not all in one go.

I would echo previous posters - look into LPAs if you still can, get advice about benefits, be proactive about practicalities rather than waiting for them to crop up, try to find out about local support, try and simplify life admin.
If I could change one thing with hindsight it would be that I should have requested a once a day carer sooner because that helps with feeling responsible as it means there's someone else keeping an eye. Also I had no idea about potential waits for social services to assess

Also I acquired a lot of info from lurking on various Mumsnet threads for which I'm very grateful!

When the time comes, put your mum in a nursing home. Specialised unit for dementia, they will be trained to care for dementia residents. It doesn't have to be so sad, just accept.

My mother is exhibiting signs of dementia, she is 78, I m 45. Aging is natural, decline is natural. This is not a tragedy, it's a phase of life, we will cope.

Having seen far too much of dementia in my family and dh’s, I added a very explicit paragraph to my health and welfare P of A to state that in x and y circs, I emphatically do NOT want any life saving or life-prolonging treatment. Dh has done the same.

Though from all I gather it’s often the relatives who insist on someone being kept going even when quality of life is very poor - ‘I can’t bear to let mum go!’
So not always the medics, who may well think it’d be kinder to let nature take its course, but of course they’re very wary of DM headlines screaming, ‘Callous doctors wanted mum to die!’

Oh yes, if the nursing homes don't keep people alive (even bed bound people with end stage dementia), they are negligent. Keep feeding them nutritional drinks in beds designed to avoid bedsores, the last few years can be v sad.

It's better to die quickly, when there is no quality of life.

Its also best to accept, as children of our parents, we can't control this.

Sometimes it's an ease for people to die. It's also an ease got them to be receiving care for people who are trained and in purpose built facilities.

@CreationNat1on please read and understand the thread properly. We are here to support each other.

@BlueLegume I think@CreationNat1on absolutely does understand the thread.

Does your mum still have capacity at times @falstaff1980 ? If so, the most practical recommendation I have is to try and get her to make a set of decisions about at what point she still wants treating for things and to put it into an advance directive.

We've been watching my grandad deteriorating for around 15 years now and honestly he's been treated for loads of infections when he would have been better off being allowed to pass away.

That doesn't help with the sadness of watching it, but knowing that someone isn't suffering once they don't have a good quality of life anymore is worth a lot.

I'd also start thinking now about what choices you, your mum and your other family members need to make to ensure that whether or not you choose to take on day-to-day caring responsibilities, you still have the ability to take a holiday etc and not be having to make sure the carers have arrived/the shopping has been delivered (or whatever). It's important to be able to have time when you're totally off duty.

I think I understand op.
I'm exactly 10 years older than you. My dad died over 10 years ago from a rare neurological disease and he deteriorated horribly. My mum has a different rare neurological disease now and has dementia.

I think two things are really important. Firstly finding time to process what is going on. It is easy to get caught in the day to day "respond to the next issue" frame of mind. I found that counselling really helped with this

The second thing is clear boundaries. You will not be able to do everything that your parents/siblings/ other family would ideally like and that is ok. It is ok to work through what you can offer willingly and gladly and what you can't. It is ok to stand by those boundaries in the face of manipulation.

There will be some things that maybe other family can do, some things that could be picked up by social care /paid carers and, in all honesty, some things that might not be done as well as everyone would like, or even at all

You can only do so much and it is ok for you to decide where your limits are.

Also wanted to add. In deciding boundaries, it is also ok to make positive decisions about what is good for you. What interests/hobbies do you have that help you feel more positive? If none, what might appeal. What can you do for yourself that helps you reduce stress and feel good about yourself. It is also really important to schedule these things in.

If you think that your stress levels are constantly high and/or you feel a continuing sense of puposelessness in lifeit might be worth seeing your GP as it is possible that you might be having a reactive depression. Meds and/or therapy might help.

One of my elderly friends just made the opposite kind of exit from life. She was living alone in a flat and was clearly very elderly and frail. It seems she just went out for a walk alone in the park late at night and keeled over quietly. That was a very brave way to go wasn't it?

It makes me wonder a bit about what a "good death" is like. It's not something I've given much thought to before, except that, for myself, I would like to be after my son is fully independent and can manage without me.

There was a post earlier saying essentially that old people were annoying because they had messy bits of paper all over the place rather than having stuff neatly on a laptop.

I think it makes things easier when a person with dementia doesn't use a computer/smartphone. There are so many online scams and problems with lost passwords. Dealing with paper bills and bank statements is easier provided there is POA.

It may be that I am starting to forget the very real worries and responsibilities associated with looking after my father in law.

But as someone who is ageing I think it is important to remember that life has value even when we are old, ill, disabled, in pain.

We all hope to be treated kindly and with respect as we pass through life.

I'm at the start of this with my mum. I found the two books of Wendy Mitchell - she had early onset dementia but, despite that, she lived fully the last years of her life - really uplifting. My mum definitely doesn't have the same personality Wendy Mitchell has, but it helped me think about dementia in a different way.

I have pretty longstanding experience of being around people with dementia and their carers, they live very happily in nursing homes, surrounded by staff who are non plussed by any odd remarks. The staff accept the dementia effects, the residents don't feel "othered" or put on the spot to get it right all the time or to remember names or dates or who is PM.

It's relaxing for the residents and they provide appropriate exercise opportunities, activities, food and care. They have company and they are happy. The facilities are purpose built. It's a safer environment than home living.

Family can live their own lives and not be a slave to the dementia.

To each their own: like most things in life, acceptance of the reality of the situation makes it much easier to navigate.

If I suffer from dementia in time to come, I hope my sons put me into a nice, homely, nursing home, and get on with their own lives and visit once a week. That ll be plenty.

@CreationNat1on great post. My Dad really didn’t ‘want’ to go into nursing care when he was ‘okay’. He did however listen to us when we explained we wanted to get him out of a hospital setting and into somewhere he would be more comfortable and importantly safe from being in an unsuitable house with Mum who was never a natural caring nurse. That is not an insult just the reality of her personality. Her view was always take him to the doctor- get more medication- dole out the medication and assume it would ‘make him better’. She never seemed or seems to understand the medication often just keeps things at bay, not improves things. The nursing home our Dad is in report back if there are any issues but for the most part Dad is in a little bubble not being nagged by our mother to do things when all he wants to do is be quiet and calm. In the words of the manager - ‘Dad is fine and a pleasure to have here, except when (our Mum) visits when he gets very agitated’. Just like when he lived with her, on edge and worrying about her rather than himself.