Coping with mother's dementia & narcissism

[MoonlightMedicine]

I don't really know where to start with this, or even what I asking for. I just feel so defeated at the moment. I am the only child (although I am not a child) and my mother has vascular dementia. My father cares for her at home, I visit weekly. My mother (in my opinion) has always been narcissistic, and our relationship had been very strained for many years before her dementia took hold. I could write a book on the many outrageous things she has said/done over the years that have caused me distress.

Anyway, she is now at a stage where she is consistently totally unhappy and this will either be expressed tearfully or (more commonly) by being abusive and aggressive. She is on anti-depressants and anti-psychotic medication and her psychiatrist says the meds are working for her. They blatantly are not, she is frequently physically and verbally abusive to me and my dad, and is in a constant state of agitation. When anyone medical comes to see her she somehow manages to put on a front and be really smiley and just tells them she is 'fine'.

She is refusing to go into respite, won't go to day centres and won't let my Dad leave her side for more than a few minutes, despite claiming to hate him. She refuses all carers, when we have arranged for them to come she just goes to bed and refuses to come down until they have gone. At £25 per hour that isn't viable on an ongoing basis. We have had her sectioned twice in the past when she has become really out of hand, but my dad seems to just accept now that his life is going to be a groundhog day of being shouted at and kept under house arrest by her. I feel he needs to put his foot down but he just won't.

I visit once a week, but I dread it. I wanted to go no contact YEARS ago but since her becoming ill I felt I couldn't do that to my dad.

I myself have 2 small children and suffer from depression and anxiety, and I am currently going through a particularly bad spell of panic attacks. I feel so angry with my mother, and I hate spending time with her because although I know she's ill and she can't help it - I know all this toxicity was there all along. Its just now it comes at me un-filtered and with an excuse of dementia.

Please nobody flame me for being unsympathetic, I try so hard to be kind to her but it is just met with anger and being told I am useless, should be killed etc. and this has been going on for years now.

I don't know how to maintain a relationship with my dad, I have got to the point where I grit my teeth and visit for his sake to give him a break but now she won't let him rest whether I am there or not, and she gets really angry if she thinks we are talking amongst ourselves and makes a big scene. Again, this was a feature of her personality before the dementia.

What am I asking? I guess has anyone navigated a situation like this and not become ill themselves? I know all the practical things we SHOULD be doing in terms of getting carers and respite etc. but my Dad just will not do any of it. My therapist tells me to go no contact but I just couldn't abandon my dad like that as he literally has nobody else. Thanks to anyone who managed to read through all of this.

Sorry moonlight, no ideas, but that sounds so hard for you. Could you persuade your Dad to have a OT assessment? - they're available for carers too.

is there any point in keeping a diary of her behaviour and passing it to the psych?

What is the practical purpose of your weekly visits? If she's not letting him leave her side, does your visit realistically give him a break? You could keep contact with him by phone and letters, but unless your visits are beneficial to him, there doesn't seem much point in continuing them.

Thanks for replying :)

The OT’s signed her off some months back. And she hated them all and refused to engage.

Dad lives for my visits. I don’t think there’s any feasible way I can stop visiting.

I really feel for you, it sounds like an impossible situation for you and your dad. I have experience of a difficult mother and vascular dementia but not together but here are a few suggestions:

Set up a camera to record some of her behaviour for her gp and psychiatrist to review.

I second keeping a diary too.

Use your once a week visit to coincide with a carer visit, let her go to bed and take your dad out, the carer will ensure she's safe, money well spent for both of you.

Arrange for a carer to accompany her to a day centre, your dad to collect. You might find that she is "better behaved" with this arrangement.

I have seen very effective behaviour management with dementia patients where people remove themselves from the shouting, violence, turning back to avoid eye contact or leaving the room if safe. It does seem to sift out some more challenging behaviour.

My own mother was vile to me and I visited only twice a year, I felt no guilt at not being there for her when she was nearing the end of her life. It wasn't a relationship I was invested in.

Seafour thank you. Lots of food for thought there.

Dad says mum misses me all week and looks forward to my visits. It’s so hard because that’s not the way she behaves at all. But when I leave she always cries and spends my final hour apologising and telling me how much she loves me. I find this part just as difficult, if not more difficult, than the nastiness that comes before!

I think a psych assessment could benefit the situation. On a private basis you could get one done independently from a mental health specialist who is known in your mother's area so that they would have knowledge of what viable options, hopefully residential, may be open to you.

Until there is a change in your mother's function in daily activities I don't imagine OT intervention would be relevant at this stage.

I wasn't suggesting an OT assessment for her - your dad as a carer is entitled to an assessment of his needs. Eg respite, help with housework. Of course he may not accept any help.
www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

What a horrible situation. Reading the number of points that Seafour suggestions, sounds really good solid plan. I was very interested to read about behaviour management. Going to read up on that.

Your poor dad. He must be so cowed from the years of abuse, he just accepts this escalation. What a horrible existence for him. Seafour suggestion of career coming and you take DF out, what an and big thing I’m sure that would be for your DF. I’m sure you’ll be anxious until you are able to get that first outing done. But you’ll be starting a new routine and if it works, will be better. Your visits to your DF do seem so important to him.

Best of luck to you OP. Hugs to you. It must be so hard and you are doing what you can, bring also the lifeline to your DF. Feel good about that 💐

Ah I see Mere. He’s had this and doesn’t need any support with housework etc but the need for respite has been emphasised by so many of the various support workers we’ve seen over the past months. We just can’t get my mother to cooperate and the community psych team do say the respite centres won’t take her unless she goes willingly. We tried a trip to one with her OT a few weeks back but she became aggressive in the car so it was aborted.

@adorethebeach (I do too) thank you! I’m going to read up on the behaviour management aspect too.

Ask if she can be prescribed Trazadone.

Referral to community mental health team. They can prescribe Trazadone. Starts at 50mg and can be increased slowly. It can wear off so may need increasing episodically. Every 2 or 3 months or so.