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Original poster

Going NC with DM who has signs of dementia?

65 replies

SinisterBumFacedCat · 14/09/2020 12:08

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.

OP posts:
TheMurk · 20/09/2020 22:00

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!!

Mischance · 20/09/2020 10:34

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

Toofaroutallmylife · 19/09/2020 14:37

@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

Mischance · 18/09/2020 23:22

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. Flowers

MereDintofPandiculation · 18/09/2020 23:08

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.

Honeyroar · 15/09/2020 13:33

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!

Gazelda · 15/09/2020 11:38

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.

Original poster
SinisterBumFacedCat · 15/09/2020 11:28

Thanks Flowers 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.

OP posts:
Original poster
SinisterBumFacedCat · 15/09/2020 00:37

@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.

OP posts:
Original poster
SinisterBumFacedCat · 15/09/2020 00:29

@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
OP posts:
Toofaroutallmylife · 14/09/2020 18:57

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

Thisisnotnormal69 · 14/09/2020 18:37

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

Toofaroutallmylife · 14/09/2020 18:17

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

Emeeno1 · 14/09/2020 18:00

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.

Original poster
SinisterBumFacedCat · 14/09/2020 17:50

@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.
OP posts:
Original poster
SinisterBumFacedCat · 14/09/2020 17:46

Ok, I’ve been chatting to a family member who is going to check in on her. Also is adamant that I don’t contact her for the time being, said as some have on here I have to be cruel to be kind to get her in the position of where she accepts that she needs help. She is not in the position where she is going to starve and physically ok, not frail enough to fall over. When things settle I would be fine with doing a once a week shopping trip and helping with admin as long as there is a witness to everything I do so I can’t be accused of anything.

OP posts:
MsFrog · 14/09/2020 16:28

Maybe step back and disengage emotionally, and try to get support for yourself if you need it, but try to stay involved enough to make sure she's safe and help her get the support she's going to need when she can accept it/when something happens to force her hand. It's hard for you, but it's hard for your DM as well, and as bad as her behaviour may be, it's not her fault her brain is changing and she can't control it. Sympathies, OP

Honeyroar · 14/09/2020 16:11

If she won’t entertain help then you’ve got to step back. Kind of be cruel to be kind. Tell her you have a new job and won’t be able to come round as much or do her shopping. With my mil we told her we were going on holiday so we’d arrange cover for two weeks.. As I said, the care agency did a better job than anyone. I don’t think you’re a bad daughter at all. It’s too much for you and you need help with her.

redgin · 14/09/2020 16:05

I know it's tough (been there x 3) and agree you need outside help. I'd speak to her GP (late dads GP was excellent). I'd say self refer to social care but I fear you'd be wasting your time ( sobbing down the phone in desperation did bugger all for me)

I really can't agree with no contact... too cruel, and you'd regret it I'm sure. You say you don't want your children to only remember you caring for their GM. You wouldn't want them to remember you abandoning her. (Sorry, that's harsh but true).

Good luck. The last 10 years of my life have been dominated by caring for elderly rels and you have all my good wishes.

Comefromaway · 14/09/2020 15:55

At first adult social care were not interested but we laid it on thick (actuallt just told th truth) about fil's health (he was hospitalised) the fact that her son (my dh) has a medical condition which means he is not capable of being relied on for care plus we have two autistic children and her daughjter wasn;t prepared to carry on due to constant threates of violence against her.

Rinsefirst · 14/09/2020 15:51

In your shoes, I’d step away for several months for a break. You are not horrible.
She needs help from elsewhere and stepping back might actually make it better in the long run.
I’d send the same letter to her GP and her council’s adult Social care dept to saying she is ‘at risk’ but you are no longer available.
Beautiful3 ‘s suggestion maybe difficult to execute but might make it easier for you to go forward.

Original poster
SinisterBumFacedCat · 14/09/2020 15:41

@Devlesko

It sounds really tough, but her husband only died a year ago. It must have escalated really quickly for you to not be able to cope with her living with you. When it gets to this stage they need extra support from a specialist and eventually institutional care. It must be hard to see them deteriorate, do what you can for her whilst she still remembers you. Thanks
Thank you. Her DH dying was definitely traumatic but I had noticed she was telling the same story over and over before it happened. Also she was bullying him a bit before he died.
OP posts:
EnjoyingTheSilence · 14/09/2020 15:40

Agree with pp, you need to look after yourself, comments like ‘you’re being cruel’ do not help at all.

Original poster
SinisterBumFacedCat · 14/09/2020 15:34

@Barryisland

No it would be cruel not to see your mum. If you must stop seeing her at least ensure that proper care is going into to her before you ditch her.
How do I get proper care for her without a diagnosis if she won’t go to the doctors or entertain the fact that she is not well?

Don’t worry I already feel like a horrible daughter.

OP posts:
Barryisland · 14/09/2020 15:08

No it would be cruel not to see your mum. If you must stop seeing her at least ensure that proper care is going into to her before you ditch her.