Going NC with DM who has signs of dementia?

[SinisterBumFacedCat]

I’ve not spoken to her for 3 days, no calls from her. The last time I saw her we did some DIY for her and she had a go at me and slammed the door in my face.

She lost her husband last year, he was doing everything for her and since then I have picked up where he left off. She lived with us for a time and became gradually ruder during that time. We moved her, we did up her house, we put so much time in. Since lockdown I delivered food to her twice a week, then started taking her shopping twice a week. Managed all her admin, she struggles with all paperwork and hates technology. She looses things, forgets dates, gets paranoid about people throwing away her stuff and has been rude and called me a liar when she forgets information I have given her. I have spent the last year making sure she is in a safe place and has everything she needs, answering numerous calls and dropping everything to go round and find something she has lost. She is manipulative with money and has cast my DH as a villain even though he has done so much for her. Her siblings are getting similarly fed up with her. She will not consider going to the GP about her memory loss and says it’s all due to “trauma” of loosing her husband, but he noticed symptoms before she died and spoke to me about them.

I know that when people get dementia/Alzheimer families are supposed to be extra tolerant of all symptoms including what feels like lies and rudeness but I feel I have reached the end of my tether. I can’t keep turning the other cheek when she is rude to me, or pretending there isn’t something medically wrong because it makes her feel better. My DC have had to take a back seat this year and I don’t think it’s fair. I did care for my DF who has a progressive neurological disease before he went into a care home and that was harsh, but he was never intentionally cruel like this.
She can walk to the shops, it’s a bit of a walk but it’s doable. There is some paperwork to do but it’s not the end of the world if it doesn’t get done. I think she really needs to see how much I do by my stopping. I have been so stressed and neglected my own family and others keep telling me to step away and let her fail so she can get proper help. But I feel bad that it is probably an illness that is making her this way. It has really taken over my life and at some points driven me to incredibly dark thoughts about self harming and running away. Is it ok to go NC with a demented parent? I should add that we had a good relationship before however when I look back on my childhood there was some things that were really not right and I would not put my DC through however I don’t know if this was down to age and experience (she was a young mum) or her being a bit of a narc.

@Toofaroutallmylife

Hi *@SinisterBumFacedCat* I have been in a similar position, but my DM wasn’t rude to me, she used to tell people very odd made up stories. Eventually we were told these “confabulations” are a symptom of dementia. She also refused to give me a power of attorney, so I ended up applying to the court of protection to be appointed deputy. Even if DM had been prepared to give a POA, I don’t think I would have found anyone prepared to give the certificate as to capacity.

I wrote to her GP about our concerns, but to be honest that didn’t achieve much as she wouldn’t leave the house to go to clinics etc. It took a major crisis (falling and breaking her ankle) to get her in the system and the support she needed.

Looking back, I wish I’d contacted adult social care to see if we could get some support for her. But they will be very happy to leave family to deal with it If they think they are available!

So my advice would be to set boundaries, and be very clear with everyone (especially yourself!) what you will and won’t do, and then try to get external support for the rest. But I know it’s not easy, and you have my sympathy.

Thank you for your advice. Could I ask, how long did the Grant of Protection take to come through, was it expensive and at what point did you apply for it (when she was diagnosed, still independent or in a care home)? I think this is the only way I will be able to ensure she can pay for care when she needs it.

I don't have any advice but just wanted to send you some support. We are just beginning to go through this with my MIL and at least have siblings to spread the weight of it. Doing it alone must be incredibly hard and you have my sympathy.

I’m afraid it took more than 6 months and cost a bit over £1000 in court fees and solicitors costs. You also have the opposite problem in that you have to get someone (doctor etc) to say they don’t have capacity. (You can recover the costs from their estate though).

In our case it was running in parallel with a deprivation of Liberty process (as DM was in a care home but said she wanted to be at home)

All prompted by crisis after crisis

What was she like before you noticed these symptoms? Was she still nasty to you?

One other thought - I know you didn’t find the Alzheimer Society helpline helpful, but have you tried posting on their forum? I’ve had some very sound and supportive advice from it

@Emeeno1

I don't have any advice but just wanted to send you some support. We are just beginning to go through this with my MIL and at least have siblings to spread the weight of it. Doing it alone must be incredibly hard and you have my sympathy.

Thank you

@Toofaroutallmylife

I’m afraid it took more than 6 months and cost a bit over £1000 in court fees and solicitors costs. You also have the opposite problem in that you have to get someone (doctor etc) to say they don’t have capacity. (You can recover the costs from their estate though).

In our case it was running in parallel with a deprivation of Liberty process (as DM was in a care home but said she wanted to be at home)

All prompted by crisis after crisis

Thank you, that’s actually a bit reassuring. I have been told by others that it takes so long to come through that their parent actually died before it did. 6 months doesn’t fill me with too much dread, I don’t have £1,000 but I can start saving.

She was ok with me in the past, if hard work, but she has lost a lot of her spark and sense of humour. She was not great to her partners, bullying, manipulative and sometimes aggressive. I used to hate having to witness it. I can now see how she treated them in how she treats me. I don’t know if this is repeating learnt behaviour, like this is how you behave with the person you see the most. She really seems to hate my DH which is heartbreaking because he did so much for her.

Thanks to everyone who has posted with helpful advice and understanding comments. I have spoken to my DM and said I will take her shopping when she next needs to but will have to do once a week. I don’t know if she will remember! Also all admin stuff really has to be witnessed. I am feeling less despondent today and will take on board all the advice given. I’m not cruel and I won’t just abandon her, I think it all just became a bit too much.

That's good to hear OP. But keep to the decision, once a week only.

Once you've got stronger support in place, it will be easier to go back to being her daughter rather than simply her carer.
Caring is a thankless task. If you get chance, take a look at Carers UK who have a good website which reinforces the message that you need to take care of yourself too.

Glad you’re feeling better. Keep sharing on here, lots of us struggling with parents regularly- it’s not just you..

We used to have a whiteboard with “going shopping on Tuesday” or “I’m taking you to the dentist on Wednesday”. That worked while she still knew what day it was!

I have spoken to my DM and said I will take her shopping when she next needs to but will have to do once a week Good. That's what you need to do, not go NC, but to set boundaries. And those boundaries should be based on what you are able to do, long term, without getting stressed. And any gap between what you can do and what she needs will need to be filled by someone else. Sadly, it usually takes a crisis for that to happen.

You are not a horrible daughter at all. You are faced with a very difficult situation: you have lost your father, you are dealing with someone with early dementia, and you have your own future health concerns to complicate matters.

You are under stress and looking at desperate measures (NC) because you do not know where to turn.

I worked with people with dementia and they can be very difficult indeed; and some of their behaviour comes from fear. They can to begin with see what is happening and they react with anger towards those around them who are confirming their worst fears.

I cannot tell you that the road ahead is going to be easy, and I fully understand that you might feel the best solution is to run away, but I strongly suspect that you would find this very hard to do, or to forgive yourself if you did.

I think you should seek support for you - there are counsellors around related to dementia services and organisations - might be worth googling for your area.

I am speaking from the heart here as I have just lost my OH after years of similar problems. Believe me there were times when I felt like running away and burying my head in the sand. You really do have all my sympathy and I send you lots of good wishes.

@Mischance - I don’t want to hijack the thread, but I just wanted to say thank you for your words. They came at a time when I really needed them. I saw my DM this morning at her care home (I live 5 hours away). She feels neglected and let down by her family as none of us will move to look after her in her own home. I know all the logical arguments why it would fail (her being in her own home has failed spectacularly before), but I also know I can’t use them, and just have to stand there and take it.

So your post gave me an excuse for the tears I needed. Thanks again

Toofaroutallmylife - how hard it is. I send good wishes.

Funny I came on here tonight thinking of posting something similar.

My DM had an extremely traumatic experience last year and it seems like she has maybe pTSD as a result but after another argument today sparked by paranoia and misplaced anger it occurred to me that maybe it’s the start of dementia.

Like you I do everything for her and my dad - shopping, admin, socialising them, checking on them - absolutely thankless tasks and now I am getting shouted at when things aren’t exactly right (through no fault of mine).

DM is extremely paranoid and distrustful of others, extremely angry especially at my dad (who, to be fair, is an arsehole) and will very quickly react to a very minor thing with either extreme anger or tearfulness (never saw her cry until the last year or so) or acting like a little girl which is the worst one to be honest as it’s just weird like a role reversal thing.

She’s only just 70 so it feels early for dementia and she’s not forgetting things in fact quite the opposite, she remembers everything,

I don’t have any words of wisdom other than to say I understand.

For me NC isn’t an option as they have no one else and wouldn’t engage with any outside help (we did try to get a home help in but my mum thought she fancied my dad (unlikely!) and wasn’t very nice to her so that didn’t last long!).

It’s distressing and upsetting. It’s a hard one to navigate alone as well, for me, if I had an issue in the past it would be mum I wold ask for help and support!!

Things were going ok for a bit, had a nice day out very positive. Nice conversation on the phone today. She then called me an accused me of stealing. I know this is to be expected and I tried everything to defuse it but it started to really piss me off and I ended up telling her to leave me alone and put the phone down. I know I am doing this all wrong, but I can’t take it. I have never stolen anything in my life and I am her DAUGHTER, I have been her slave since her husband died. I cannot do this anymore.

You’re not doing it wrong. You’re trying to deal with someone who has probably lost all sense of reality. Please try to get yourself some support. It’s horrible, I’m so sorry. But you can get through this

@SinisterBumFacedCat you're not doing it all wrong, it's an extremely difficult thing to deal with and you're only human.

I've just read all your posts and I really empathise with you. I'm in a very similar situation, I'm an only child, mum is in a definite cognitive decline which is also bringing out the worst elements of her personality. On a good day she's like a little girl who needs lots of praise (she often calls me mum) and on a bad day is a spiteful angry teenager verbally lashing out at me. It's also bringing memories of my childhood, which like yours, had elements that were not particularly great (lots of emotional liability from her & guilt tripping) but I always worked hard to maintain a good relationship with her and understood where her behaviour came from as she had a difficult childhood herself.

Be kind to yourself and remember she'll probably have forgotten you hung up by tomorrow. I had a similar incident with my mum a few weeks ago (after visiting her daily for one issue or another, some which were non existent when I got there & she had no concept that these may have caused me problems with work and other commitments nor concern when I explained this) which ended up in an argument where she was extremely unpleasant. I walked out and she had no memory of this two days later and denied it had happened! Whereas I was still very upset about it.

It's very difficult when they are in that place, where they are just about coping, so the statutory services won't be interested plus, if she's anything like, mum, they are very very good at masking how they really are to others. She is also, to be fair just about coping at home for now but only with a lot of help from me.

As others have said, try to set boundaries. We've a caravan so have booked a lot of breaks (starting from next week) now that lockdown is less stringent. I think mum has forgotten we have it! She was a bit shocked by this but it has mean she's reinstated her cleaner and gardener which stopped during lock down and she got used to me doing it all etc. We've sorted out food deliveries and she has got a good social network but seems to very different with them - masking again. Is there anything you can say or an excuse to be less available?

@SinisterBumFacedCat take a deep breath. Be kind to yourself, you are doing the best you can in a horribly difficult situation. Tomorrow is a new day and chances are she won't remember. I say this having had a parent with Alzheimer's and try as I might, I lost my patience while on phone several times too.

You are dealing with a very difficult situation. Please contact adult social services. There may be a time when she needs to go intone home and they will help. Best to have her on their radar as soon as you can.

I'm so sorry OP, this sounds so stressful ☹️

Thanks for all the support. I really don’t know what to do. All the online advice recommends distractions and getting duplicates of things she looses in case. I can’t do that because it’s a) such random stuff like books and cds and b) I can’t really afford it, I’m still on furlough (likely to be made redundant) and she’s has enough money to buy duplicates herself. I feel guilty because I am not taking her shopping today but also still really angry that she accused me, the person who has done everything for her. Apparently she has also told her friends that I am steeling things from her house.

Sinister Everyone’s dementia is different but there are common themes which are often cited by families before a diagnosis is sought. Believing money is stolen is probably the anxiety that crops up most . Possessions being moved / taken Is also high. Increased sexualisation is another.
My DM got locks changed as she believed we were driving 50 miles to hers, hiding in the bushes, and taking things when she was at the shops.

My friends mum used to hallucinate bunnies and squirrels and sing hymns with imaginary children. I wish my mums dementia was like that!

It sounds as though you could get Attendance Allowance for her. Phone got a form and put down every little detail on it. You don't need a diagnosis and it is not means tested. (I didn't know about this for years, officials don't seem to tell you)