If you have a parent with dementia, how do you cope?

[JustlookingNotbuying]

Because, currently we are not coping well at all.
Mum is 79, dad is 80. Mum was diagnosed with Alzheimer’s in 2018.

I am not sure what stage she is in but would say it’s the late part of the early stages. As each month passes, her memory is getting worse and worse and her needs greater. She is forgetting so much.
Dad does not cope well. He is quite a stubborn man and whatever ‘help’ I have suggested over the years he has sneered at or refused but he constantly moans about how he can not cope with mum etc.
Yet he is lucky in many ways because he has both his dd’s living in the same village as they do.

My dsis works full time but pops in a few times a week and does a big clean once a week (she has her own cleaning business). I work part time so am about more than my sister (although am just as busy as I have dc and she doesn’t).

Up until last year I was doing most of the help, I was doing a lot but had to take a back seat as I made myself very unwell with the stress of it (dad totally oblivious, says I’m stressed because of my dc!), but I still do a lot.

The problem is that if I don’t help with things like washing mums hair and cutting her nails etc then it doesn’t get done (although he has, this week allowed her hairdresser to come in once a week). I refuse to let my mum look disheveled because dad can’t be bothered to help her and say things like ‘well she’s got dementia so she won’t care how she looks’. Mum always took pride in her looks.

Like I say, dad has refused many suggestions of help and after a year or so of me suggesting a carer he agreed to let me get one in for an hour a week to start with, kind of a foot in the door but 4 months on and she is still only there for one hour and just draws pictures with mum. I’ve suggested we now up the hours and get her to do some more bits such as personal care but he used all kind of excuses not to take this forward, ie he’s not too keen on the carer as she’s a smoker (she never smokes in the house of course) or she’s very expensive (She charges £22 per hour and mum has £90 per week attendance allowance and they have ££££’s in the bank ffs). He is always finding an excuse. I know he really would just be happy for my dsis and I to do it all regardless of how stressful it is to us.

He moans constantly that he has no time to himself so I got mum in a day centre for one afternoon per week to give him 3 hours but because mum doesn’t remember from one day to the next she would get confused every time we got her ready to go and say she didn’t know where I was taking her and she didn’t want to go (she was always fine when I got her there and collected her) but dad insisted we cancel it. Now all her does is moan that he can’t even have a daytime nap without mum bothering him.
It is so so stressful. I just don’t cope well. I feel sick to the stomach with it and with my own issues (anxiety, depression bad IBS and Perimenopause), caring for my own family and being a part time carer myself I literally feel like I am losing my own sanity as I’m splitting myself into a million pieces trying to help everyone.
It is on my mind 24/7 and has a huge impact on mine and my families life. DH gets really pissed off as he thinks dad should dig into his pockets and fund the help himself rather than relying on me (dad is very old school and thinks I should give up my job and dh support me!!). I understand what dh is saying and agree but he doesn’t see the predicament I am in, I feel torn as I know my parents are struggling so much.
If you have a parent with dementia how do you cope with the stress of it?

@Tara336 I understand from the first nurse we spoke to on the phone that the nurses need to be in your area as they are thinly spread out around the country. This is for face-to-face rather than over the phone. We were fortunate that we have them in our area. It took around 6-weeks for them to arrive which I thought was pretty good. The nurse was absolutely lovely and spent around 2-hours with my parents. I was at work and afterwards the nurse called for a catch-up.

Dad refused all help and both of them said they are absolutely fine. All of it not true and mum explained to the nurse she does not have dementia only short term memory loss. The nurse had to confirm with us that she has been diagnosed with dementia.

The nurse said it was all forced from mum to keep saying they are fine and she could see that they weren't. She has left the case open and will go back in 2 months. My experience now is to be there to take mum out of the picture so dad can have a one-to-one with the nurse.

Spoke to mum and dad after who said they have a lovely afternoon with the nice lady although she couldn't help them as they don't need help. Really?

I am in a very similar situation. DM has Alzheimer's and DF at 88 is her main carer... but a lot falls to me. As someone else said - they are the first thing I think about in a morning... first thing I do is call them, or DF is calling me wondering why I haven't called.

My DF dotes on my DM, but he does not understand her Alzheimer's... he still expects her to deal with her post or phone calls and she cannot. This results in lots of mix ups etc and me doing as much admin as possible. DF is also very stubborn and feels he should be doing the caring without wanting outside help unless it's from me! It's an ongoing struggle and very often an ongoing nightmare!

Long story short, 2 months ago was taken very ill and ended up in hospital for 8 days. I honestly think that stress was no small factor in it (I had a lung infection which needed IV antibiotics, but also triggered Pericarditis - fluid around my heart) I had some great advice from these boards. I am physically unable to help out at the moment, so things just had to change. More care has come in and they have even started using things such as volunteer transport to get them to hospital appointments. I have felt very guilty - still do - but as my heart health depends on me resting at the moment I have had to finally put myself first.

There are no easy answers, I'm so sorry OP... but look after yourself first and foremost. I have learnt the hard way. As everybody says, you can't pour from an empty cup!

@FlatOutAgain that's great, thank you. I managed to get someone linked to the Dr's to visit on Friday while I was there, she is a dementia support worker. Was so so helpful telling us what and who was available to help including the Admiral Nurse. She did an assessment of my dad and he displayed some of his nastiness/temper so that was probably helpful for her to see. I'm expecting a lot of phone calls this week from occupational health, some care organisations etc and I do actually feel like a weight has been lifted off me as DM actually realised the strain ALL of us have been under rather than just her. DF can't walk, is incontinent and has absences but thinks he can still drive! His licence has been taken away thank god! That was a battle in itself as DM definitely enables a lot of his beliefs about how well/unwell he is which she now recognises as unhelpful

This is oh so familiar sadly.

A couple of things to pass on

memory clinic - please don't think it will give you all the answers to your questions and needs. My DM went but was too distressed to complete the assessment. The main source of care and support is social services, not the NHS, and they don't need a formal diagnosis of dementia to start providing those services.

Social services - request a carer's assessment for the parent doing the 'caring' and even for yourself. If for the caring parent - be there and be prepared to challenge what they say in answer to the questions of the social worker. We've had some howlers from the caring parent (3 out of 4 parents with dementia for DP & I). Take whatever help they offer, even if it doesn't quite fit their needs as next time you ask they'll have to provide the next level up of care.

Make it clear to the caring parent, that some of the care offered isn't for the parent suffering from the dementia. but for them, the carer.

There maybe families out there for whom this has not happened, but I've not come across one - care of an elderly dementing parent is a slow inevitable car crash, and there is precious little you can do to prevent this. I say this to relieve anyone of the guilt surrounding this, so I'm sorry if it sounds bleak. There is nothing you can do, if they will not accept help. You cannot force the couple to accept care, you can only introduce the statutory services to them. This is not the fault of the statutory services if the parents will not accept care. It is not your fault for not being a good enough daughter or son and it's not your parents' fault for refusing help - they are scared, really scared. It's a scenario played out across the country. Once the situation gets to a crisis point, IME social services are pretty good at getting in there and sorting things out.

Take time to decide on your own boundaries - how much care will you give ? and stick to that. Like they say on planes - put your own oxygen mask on first before helping anyone else. You're of no use to anyone burnt out. And your own children come first EVERY SINGLE TIME. Stepping away will push the situation further along and that's no bad thing.

My heart goes out to any family facing the issue of a parent with dementia - it is a cruel disease. Get those lasting powers of attorney in place (financial and health) now!

@Pebble21uk Sorry to hear you have been so unwell.

OP I've become convinced that if our elderlies have failed to future proof then there is a point where you have to leave them to it ...

Has anyone on this thread read the 'contented dementia' book? I have just started it and sounds like it would work.

and MASSIVE hugs to everyone in this situation

@DPotter some very sound advice there, I definitely felt like I was thrown in the deep end as my DF deteriorated fast after an accident. I have had so many people tell me that DM should this or your DM should that, but as I said for 100th time today "I have no control over other people's decisions" I have tried everything I possibly can to get her to see she needs help but she's been totally resistant. What has helped was me getting the care Co ordinator in to give her a talking too and I came away from that feeling I had got somewhere. I actually had a relatively peaceful weekend as I thought I could relax especially as DM realised how much of the load everyone else was carrying too. She apologised but today it's back to normal with tearful calls, requests for help and no concept that I have a job, home and a chronic illness to cope with as well.

I pay a live in acted at a cost of £6000 a month because it's the only option when you have savings ! 🙄🙄🙄

@tryharder100000000
That book was my bible.
That and The Selfish Pig’s Guide to Caring.
But Contented Dementia made a huge difference to my mind set.
We had mil living with us from Christmas to her death at 99 a month ago.
We had zero help from Social Services <<spits in their general direction>>
but the Memory Clinic when we finally got to them were superb. Melatonin saved our sanity by giving us decent nights sleep.
A phrase I used to mil was “ You know how you have been careful all your life for a rainy day? Look out of the window, it’s peeing down!”
That made her laugh and she was then happier to spend a bit on a private carer who came in once a week to allow DH and I to go to lunch and look at each other in stunned silence!
Oh how I miss her!

Very difficult when you have an “independent” parent. My father insisted on doing all his own DIY and electrical work (he was qualified ) He had the capability but not the energy or time. At one time he had cables supported by g-clamps to the light on his kitchen ceiling - electrically safe but unconventional. You feel people are judging you for your failure to look after them “properly”, but if they’ve got capacity, what can you do?

I found it helpful to detach myself and “observe” him, as if he were a lab rat.

It was-a lot easier when he went into a nursing home, and we could have purely social visits. I could enjoy his company, not just see a sequence of problems

Today DF who can barely walk a few steps, has decided to call the DVLA to see if he can drive! The hospital said he cant, but DF grabbed forms sent them off himself and possibly lied either intentionally/unintentionally depending on how his mind was that day and I've checked online he still has a licence. So I've had to contact them and explain the situation. I actually don't feel like I have one day where I am not fielding calls from DM about what DF has done now. I would love just one day where I can have some peace and just be normal

Signing in with the familiar situation of one parent refusing help whilst the other declines. In our case it's PIL which makes it even more challenging as I can't be more vocal in trying to lever in care.

Pretty sure FIL is days away from having a carer breakdown whilst the options of day centre and carers coming in for mil have been refused multiple times over the last year. Had a carers assessment and refused all suggestions.

MIL has dementia and is getting worse and worse. Gets agitated and violent - I'm not even sure if the day centre would accept her any more (although this is mostly aimed towards fil), some continence issues. I think they'd both have a better quality of life if she was in assisted living as FIL just leaves her in bed as it's easier for him so there's no interaction or routine.

We can't do any practical care other than visiting every few weeks or video calls, but mil is unaware of what's going on in these.

Marking place - my DF has dementia and my mum was the gatekeeper. Will come back and post.

I had a talk with the social prescriber today. Things are a bit better this week but I'm definite feeling overwhelmed by it all. DM is the carer for DF and she is leaning on me so heavily and I seem to have take on all their life admin at moment and having so little time to do my own or even have some time to myself. I've been advised to step back a bit and see if DM will cave and accept some help from carers, I'm not sure how I can other then switching my phone off which cuts me off from everything and everyone else if I do

@Tara336 There are weeks and months when it feels like your very being has been hijacked and that you are existing only to please your parents. Eventually one of them will over step the mark and you will make changes.. It’s like reaching a breaking point. Not easy when you are in the eye of the storm. But eventually you just cease helping as much because you simply can’t

@Tara336 could you just not answer? Warn your dm beforehand if you like - 'I can't answer the phone any more between 7am and 6pm because I need to be able to focus on the dc/work/a new project. And i do need mote sleep so im going to turn the phone off at night'. Then just call screen.

Your dm may ask how she will cope. The answer is 'I'm not sure mum, it's a big change. I do feel you could probably do with more help. What do you think you will do?'

@PermanentTemporary @Mum5net I've solved the phone issue :) I can set it to DND between set hours but allow some contacts to still message and call me. I'm pleased with that because it has been a real strain at times, I get phone calls where DM is crying because of something DF has said or done and it's really hard to cope with. It's been such a rapid decline in DF as the Dr's say his accident caused further damage to the brain so we have all as a family suddenly found ourselves in a situation we were not prepared for. I have a chronic illness and stress really does it no good at all, I also love 2 hours away from DP so am having to manage everything at a distance or drive there once a week which is what I'm currently doing. I know nothing can prepare you for this but to see DF declining and DM working so hard to keep him at home is heartbreaking at times.

I realise this is an old thread, but it has been immensely helpful in making me realise I’m not alone, thank you.

Yes it is helpful. The most useful thing I have found its to set your own boundaries in your head even if you don't tell the dps. I visit for 3 hours twice a week. In that time, I drink tea and eat cake and sort out immediate problems, such as online banking, bringing the tender plants into the greenhouse, updating their calendar with medical appointments. Then I leave. I do not phone in between visits.
I have tried to put in place lots of other support but it has not been accepted. If they tell me about their many disasters now, I try to just say 'oh dear' though occasionally I do snap 'I can't help you as you won't accept my suggestions '

Things will have to get worse before they get better.
I refuse to deal with their GP until they agree to set up a health LPA. If they leave it much longer they won't have capacity to set it up anyhow.
DBros of course do bugger all. It was making me ill and it probably will do again, but right now I am stepping back.

You might want to check this website, it has some valuable tips of coping

Dementia tips