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.

That sounds really tough. And of course you should be focussing on your DC.

But I'll be honest and say that I think it would be incredibly cruel to go NC with your mum while she is showing signs of Dementia.
Do you have siblings?
Can you speak with Dementia UK or Age UK for advice?

I know you wouldn't be able to have a conversation with her GP, but perhaps you could send an email or letter or phone call to outline the symptoms and perhaps when her next medication is due, they could ask her to go in for a medication review? (if she has regular prescriptions, of course)

Thanks for the reply. I’ve no siblings. My DM has but they are also fed up with her. I don’t want to be cruel to her.

That is tough. We have similar with mil except the main brunt of her anger is her dh (fil) and her daughter. Fil is not in the best of health himself and he just can't cope. He's been getting suicidal thoughts. We have had to contact social services.

Paranoia is a definite symptom. Definitely get in touch with The Alzheimers Society and they may be able to point you in the right direction. Are you concerned that she is unable to cope living alone? If so then you can refer to Adult Social Care. They may with her to go the the Memory Clinic to determine whether it is dementia and they can assess her for any support she may need.

@SinisterBumFacedCat

Thanks for the reply. I’ve no siblings. My DM has but they are also fed up with her. I don’t want to be cruel to her.

No, I understand you don't want to be cruel to her. You've been a caring child and are at the end of your tether. Being responsible for an ailing but abusive parent is incredibly hard, particularly while you have other family who need you. That's why I think it's important for you both that you get outside support.

I phoned Alzheimer’s society earlier this year, I’m afraid I got lots of sympathy but not much practical advice other than “keep going, we have all been through it.” I am mentally composing a letter to her GP, but she is so against getting any medical advice on memory loss, she keeps saying it’s normal ageing and trauma, it isn’t, she is barely elderly tbh. She can look after herself but looses stuff and gets paranoid a lot. She is very underweight but again “that’s normal”. I used to ring her everyday to keep her company. I don’t think social services will be interesting as her living conditions are fine and my DF was hoarding rubbish and had a diagnosis before they were even bothered with him. Maybe I have to just go back, but I am very hurt and depressed at how she sees and treats me (glorified servant).

What a morally difficult situation to be in. I think to be blunt, she needs help, you can’t give her ALL the help she needs, so outside agencies need to.
I’ve been involved in a similar situation by proxy So nothing to the extent you are, but it helped to remember it is a disease that can’t be coped with by yourself. You need support and help from professionals.

Sorry, cross post!

I think at this point you need help. We had similar with my mil. It’s not their fault, it’s the way dementia often goes. Your mother really believes she’s fine and its everyone else confusing her.. Our turning point was getting a care agency to come and talk to her. We said we were going away for a few weeks and couldn’t do anything for her for a while. The agency met us at her house and were obviously used to dementia and how to deal with it. They talked her into having a couple of hours help a day, which took the pressure off us a bit. It was amazing how she relaxed into having care. I remember the Alzheimer’s society had a forum and it was helpful talking to others (although also scary to read about what others were going through further down the road). Hugs to you. Early stage dementia is really tough on the relatives too.

Oh bless you. I am an only child too, and saw mum through 7 years of debilitating dementia. Incidentally, bereavement can trigger the onset of dementia symptoms: it was how mum moved from muddled-but-just-about-coping to needing a lot of support.

The oxygen mask is an image often used with carers - you have to put your own oxygen mask on, in an aeroplane before helping others to to do theirs - ie. as a carer, you have to look after yourself, if you are ever going to help your mum. And if that means switching off your phone, then you will have to do that for a while.

There is outside help available - though my mum's GP would not help until we had the power of attorney for health and welfare in place, or until there was a crisis. Fortunately she eventually signed the power of attorney and I was able to get help in place, although it still took a crisis before she would accept it.

The Alzheimer's Society helpline is an absolute life saver. They will listen, and talk you through options and how to access help. You may need them every now and then, or just occasionally, but they are people who have walked where you are and who understand.

Best of luck - and do keep posting. MN has people going through this too, with useful info to share.

Thanks for all the advice

I have no advice apart from, send food once a week so that you know she has something to eat. I wish you all the best in this difficult situation. Take care of yourself.

Sorry - cross posted. Perhaps try again with the Alzheimer's Society with specific questions when you have them.

A letter to the GP is a good idea, so that they know what they are dealing with.

I think it is helpful to remember when/if you do go back that she really isn't being rude to you. The paranoia/accusations are incredibly hard to live with, but it is her illness talking, not her. Try to avoid saying "No" to her, if you do go back. Dementia training teaches carers to avoid triggering aggression by not saying no, to distract, and deflect

"Where's my purse? You have stolen my purse"
"Mum, I love you. I don't need to steal anything. I can help you look for it. Perhaps you have put it down somewhere."
"No, you stole it."
"Oh dear. Would you like a cup of tea? And a biscuit? I'll put the kettle on then pop to the loo. Oh look! Here is your purse, in your coat pocket."

LPA I have tried to get this sorted but she flatly refuses, says someone told her it takes away her civil liberties. I’ve tried and tried. I would love to be the person who takes the aggression, false accusations and lies on the chin but I have done it for over a year and it’s not made anything better, only worse. My Dads condition is genetic, I could develop symptoms anytime in the next five years, and I feel like my timid very precious. I know that probably sounds selfish. But I don’t want caring for my mum to be the only thing my DC remember about me.

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.

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.

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.

@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.

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

@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.

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.

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.

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.

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.

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.

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

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.