Struggling with mum's decline

[Parnassus]

Hello,

I don't know how much detail to give. I am really struggling. My mum has been having memory issues for some time now, but things got worse late last year after my dad was in hospital for a few days; it seemed to go from forgetfulness to forgetting her parents had died, so a pretty shockingly rapid decline. Fast forward a few months and sometimes at night, now often during the day, she doesn't know who my dad is or thinks he is someone else (sadly someone who abused her in the past). She escapes, sometimes goes to a neighbour's or just wanders off. It's terrifying. Both parents very resistant to support and terrified she'll be taken away.

She is seeing a social prescriber in a week or so, and has had bloods (thyroid meds adjusted now), but there is a long wait for a CT scan and appt with a memory nurse. I don't understand why things aren't happening faster given the risk. Terribly some of these episodes were on the back of her thinking I don't like her or missing me. I love my mum and family dearly, whilst having a tumultuous past due to trauma and non-acceptance of parts of who I am. It has been hard to navigate connection, but I know I want to be there for my family as best I can be. I feel like I am gas-lighting myself into denying how difficult things have been in the past, like I’m a terrible person or something.

The most recent visit went well; if I didn't know she was so poorly I wouldn't have known, but a couple days later back to running off though some improvement to her mental health. She feels safe with me. Spoke to her tonight and she thought it was morning, so nothing drastic but things change rapidly.

I'm so worried about my dad; they are both in their 80s; they had me late due to struggles to conceive so I am in my 30s. I know it isn't young, but it feels too young to lose my mum in this way. She is the safest person in my family, and I feel so much loss that I likely won't be able to have deep and meaningful conversations, that she may forget me, that she perhaps already has at points but I've not been told. It's terrifying and really impacting my mental health. I hoped for my whole life that my parents would avoid this, after watching my grandparents go through similar horrors. I know it's pointless saying it's not fair, and that radical acceptance could help. I'm just feeling so XXXXing sad and desperate with the whole situation. I cry all day in-between life tasks. I guess it will improve or it will become the new normal - I just can't imagine coping with this immense grief, before someone has died even. I just want my mum back. and I want her to know my kids if we have them.

Thanks for listening.

I’m so sorry to read your post. I don’t have any advice but I really didn’t want to read and run. Have you put in a call to adult social care about the lack of capacity and how little help your did is accepting/the risks etc? Have you seen your own GP or a therapist to discuss your own mental health. It’s a really tricky time and it’s important to accept your own support xxx

I am so sorry, it’s horrific having a DP with dementia and makes you question all aspects of your life as you watch the person you love disappear in front of your eyes.

Honestly I would say at this point, you need to protect yourself. You can do this in part by concentrating on what needs to be done from a practical perspective contacting social services and getting them to do an assessment. Even without a memory clinic or CT scan your DMs behaviour is clearly unsafe.

I ended up trying to switch off emotionally at each visit as it was the only way I could cope and now both DPs are in the care home, DM is so far removed from my DM I think of her as a different person. I use copilot to give me scripts and prompts to have a conversation that is suitable for her but doesn’t tax me emotionally. Clearing out the photos was the hardest as it showed what vibrant people they used to be.

Maybe try a dementia support group. I haven’t used one myself but might be helpful.

I’ll start by saying that I do have e patience of Dementia but not with my DPs, although my DM was diagnosed last year.

I do totally get what you’re saying though. The situation is doubly hard because your DF won’t accept help. Realistically this is what will speed up her move to a Care Home. We had the same issue with DFIL and simply could not get through to him that if he wanted DMIL to stay at home then he needed to accept some help.

I also agree with speaking to your own GP, losing a DP is awful and Dementia seems to cause double grief, once when you realise that the person you know is gone then when they actually do die.

If she’s regularly running off I would recommend filling in the Herbert Protocol and maybe seek medical attention for Delirium.

When my DMIL thought that DFIL was a strange man who was trying to kill her, she also ran away from home regularly. She also thought that there were other people in the house trying to kill her.

It was the weekend and we called 111. They said to bring her to A&E and from there she eventually ended up in a local Care Home. DFIL struggled massively with not having her there but she was so much happier once she had settled in.

I’m really sorry you’re going through this. The wandering, not recognising your dad, thinking he is someone unsafe, and the sudden changes in confusion sound like things that need to be taken seriously, especially because both your parents are in their 80s. I’d keep pushing the GP, memory clinic and adult social care, and write down every incident with dates, times and risks. I was reading around similar situations and found this RightCareHome article useful: https://www.rightcarehome.co.uk/blog/live-in-care-vs-care-home-uk. It helped me think about when extra support at home may be enough, and when safety risks like wandering or distress mean a different level of care needs to be discussed.

Thank you and others for responding. I am too depleted and depressed to respond fully at the moment but I just wanted to update folk that mum is currently in hospital and assessments are taking place - physical and mental. The decline was so rapid; at Christmas she forgot she asked for a mince pie, and now this. Hoping so much for some improvement as some physical causes could be in the mix, but the working diagnosis currently is dementia.