Between DF's dementia and DM's entitlement, I honestly can't take much more :,(

[Frazzledmummy123]

DF (88) has recently been diagnosed with dementia, and is currently on waiting list for further investigation as to what type of dementia he has. DM (84) is his carer and absolutely nothing has been put in place regarding carers. DM insists in martyring herself and constantly moaning about hard life is yet point blank refuses any help. She remains in denial about DF'S diagnosis, despite his dementia worsening significantly recently.

She is losing weight rapidly (refuses to see a doctor however has had a recent clear CT scan), and is clearly exhausted, as not only does he have dementia, but is almost immobile and has incontinence issues. I am writing a letter to their GP and asking for a referral for a care needs assessment which I am hoping will help as things can't go on like this. My mum has been taken into hospital twice with 2 separate health scares in the past few years, and both times, I've had to leave my family (I have 3 kids, 2 with autism) to step in to look after my dad. STILL, nothing was put in place. It is just expected I'll do it when there is a crisis.

She has now started making comments about me moving to a ground floor flat (currently live in a 2nd floor flat) which is almost definitely her lining me up to take in my dad if something happens to her. Due to his care needs and my family commitments, this is simply not doable, and I am shocked at her entitlement.

She has not acted on anything, just planned to put it ALL into me. Remained living in an inaccessible house (see previous posts), refused any care, refused walking aids for my dad until it was too late, didn't see their GP about his confusions until about 4 years in, and now, I am to pick up the pieces and move flats to take him in full time.

All while watching him seriously confused and thinking he has 2 houses, not knowing what day it is, throwing tantrums, her declining with carer burnout, endless guilt trips and living every day with risk of a phone call saying she is in hospital and he needs care which he has no current access to.

I am starting to resent DM and feel suffocated with the expectation and risk of a crisis. I don't mean to sound selfish but I feel like I can't take much more of this.

OK. Will they be self funding their care? If they have more than £23k in savings then they will be.

You do need to push back

you don’t need to feel selfish

keep reminding you her of alternative care, you’ve got two dc that need you

also put in for council tax SMI to get 25% reduction due to dementia diagnosis and date the diagnosis for back payment

get social services involved and push for help

Does your dad still have mental capacity to make decisions about his care, where he lives etc? If not does anyone have power of attorney for his health and welfare?

You can make a referral to adult social services for a care needs assessment, you don’t need to get the gp to do that. Any care will be subject to a financial assessment though.

FIL was diagnosed with dementia. They were in denial for a long time but phone calls from MIL asking for help got worse. It got to a point where we sat them down and said this is what we are prepared to do for you. It was powerpoint presentation.

They lived too far away in a huge house. We moved them to assisted living nearby. We exchanged their home for an assisted living flat near to a hospital and doctors surgery - all within walking distance. MIL was then placed under DOLS and is in a care home. FIL the one we were worried about is still semi independent in assisted living. It has to reach crisis point for anything to happen in a lot of cases.

You phone social services and report them as vulnerable and needing assessment and that you are unable to be involved in anyway despite what your mother says as you are a carer already.

Next time she is in hospital you don’t step in.

Bloody tough but it’s the only way she will accept professional care.

When mum complains point out the options she has for getting help with dad's care. Tell her straight that you will not be able to provide full time care for your dad if she has to go into hospital, make sure she understands what you are willing to do and what you are unable to take on.

If you can arrange a care needs assessment and she is willing to cooperate, that would be a good step forward. It is the local authority's responsibility to make sure that your dad is being cared for appropriately as he is a vulnerable adult.

All this is very hard on you - the inevitable worry is very wearing. Be realistic about what you can influence and what you can't and accept that your mum might need to reach a crisis situation before she is forced to make some sensible decisions about accepting help with dad's care.

This situation only changed for me when Dad (heart condition and physcal diabilities) suddenly needed hospital, and therefore mum, (with dementia) needed care... when I was away on holiday!

Mum never went home after that.
Dad's ill health couldn't keep the both of them going at home, tbh he coudn't really keep himself going after that, and he ended up choosing them a care home to both move to together.
This was less than 2 years ago.

Dad died this year and I'm SOoo glad that Mum is happy and settled and looked after already.

I'm glad I stepped back. I'm sorry that it caused so many arguments between me and my dad, but I'm glad I drew a line. Otherwise I'd have been out of a day job, out of sanity and even more ill than I already was before!

You need to draw a line. They won't like it, but you can't do everything! There will be upset, there will be arguments and you will have to lay down the law, but some people just won't get it any other way.

Unfortunately, you may need to just wait for the next crisis and refuse to step in, which will force them into action and accepting outside carers. I know it will be hard, and you will feel you need to step in, but that is just setting yourself up for burnout.

You can try to get a care needs assessment now, but they may resist. However, you can try and find out who in social services you need to call next time your mother goes into hospital.

When my increasingly disabled elderly mother was carer for my disabled elderly father, I think there was some system which set up an alert if a carer was hospitalised - your parents' GP or social services may be able to give you information about that and get your parents registered.

I had similar, my DM wouldn't plan ahead to the point of refusing to even have a hospital bag ready for DF when he was in and out a lot.

Id definitely say right now that you are not going to be moving or providing housing or care. She won't like it but best to be very clear now. If she mentions the ground floor thing again ask her when she is moving to a smaller property.

Also, id have a look at residential care options as well as home care packages. It does sound like if your mum can't look after your Dad then he will need residential care in the near future.

I sometimes think ( this may not be the case here) that this comes down to money - if they have over£23k savings ( ignoring the house) and it’s going to be self funding , a lot of elderly people suddenly don’t want to see their savings rocketing downwards and make poor choices, not realising the family would be happier in most cases for money to be spent and take the pressure off them. Thing is this 3 times a day, 7 days a week can easily be £29k a year , but it’s a lot cheaper than a care home , ‘if ‘
it works- that needs pointing out and it’s why we need to get real in this country and bring in some kind of a contributory insurance system beyond 40 that will cover off social care and care homes ‘in my opinion’ - I do think for many elderly people it comes down to money - even those with lots of it.

Have you told her flat out? Not hints or gently reminding her, just flat out ‘I will not be taking on any more care for dad. The next time there is a crisis I will not be able to help. What I will do is help you put things in place at home.’ Tell her clearly what you are and are not prepared to do. Have you done this?

This is tough and I'm sorry I can only offer tougher for the future for you.

Several things spring out -
it really doesn't matter what type pf dementia for DF has. The spectrum of disabilities and needs is pretty similar, so don't fret about further investigations

Your focus needs to shift from GP support to Social services support which you ask for yourself. GPs don't get involved. You will need to self refer and request an assessment for your DF and one for your DM as his carer. Try and have someone sensible there for both - to challenge the inevitable "Oh we're fine" claims and the "We don't need any help from you - Frazzle will help".

Accept any help they offer, or at least try and get your Mum to accept it. When SS are there, say again what you are willing to help with.

make contact with local Aged UK or dementia groups - they can be a wonderful source of local information and support.

Please for the sake of your own sanity - never promise someone they will never go into a home - sometimes this is the only option for their safety.

I have to say this and I'm sorry, but you and your family need to be prepared - it is not uncommon for frail elderly to refuse all sensible support and for the situation in the home to disintegrate completely. It's like watching a slow motion car crash - you know exactly what is going to happen and there is nothing you can do about it. It's completely aggravating and sad in equal measure. You will know there are services which can be put into place to make their lives better, enjoyable even but they will refuse.

You will become familiar with the concept of capacity or competency. This is a legal term which means everyone has the right to make their own decisions even if those decisions are not good ones. Unfortunately the bar is set low - basically if someone can express an opinion they are held to be competent and therefore allowed to make their own decisions - and from this comes the slow car crash...

At some point you will need to step away. And that's fine - you have to look after yourself and your children etc.

You and your family have my sympathy; been there and got the tshirt with 3 out of 4 of mine and DP's parents have been down this path.

You'll get a lot of support on here - lots of us have been through this so know the pitfalls. Sorry - that's a lot and I don't want to overwhelm you any further. Take care of yourself

It's the council that sorts out needs assessment, not the GP. Life got much easier for us once social services were involved and also in our case, the cmht.