Don’t know where to start

[Butteredparsnips]

I NC back in January to start this thread. Its nearly August, and it has taken until now to take the plunge and write this opening post. Even now I’m not sure if I want support, advice or just to vent and rant. Please forgive me, this is long.

DM is elderly and frail, with multiple health conditions, poor eyesight, limited mobility and hearing loss. For the past few months she has been having nightmares and delusions and is really quite paranoid at times. I fear that this may herald dementia even though her memory is actually very good. She is also stubbornly, fiercely independent. Way beyond sensible. She refuses to accept her physical limitations, and is extremely reluctant to accept any help.

The thing is I am a Healthcare professional. I work in palliative care and have worked in Hospital discharge. If anyone should know how to manage this, then I should. But fuck me there is a whole world of difference when it is your own. I feel like I am absolutely drowning. I also have a (more than) full time job, three children of my own and don’t live close by, meaning that I am not on hand to readily liaise with local services.

DM needs care; ideally in a care home although she could be supported at home at least for now, with the right care package. Despite her previous independence even she is beginning to admit that she is struggling, but remains extremely reluctant to accept help. DM isn’t realistic about her care needs, and her paranoia is getting in the way of her decision making. She has suggested that she could continue to live independently in a smaller property and I strongly disagree with this. She is struggling with housework, washing, shopping and cooking. On top of which she is fatigued due to her physical frailty and is sleeping poorly due to her nightmares. She is just not safe.

But. Because her memory is good her GP is of the opinion that she has capacity to make her own decisions and I have had the “it’s her choice” speech. Yeah, I know that one well actually. The thing is DM may be able to count backwards from 100 and yes she knows who the Prime Minister is. But she also thinks that her home is bugged by people trying to empty her bank account, that people are living in her loft, that the gremlins are trying to steal her electricity and that I am lying to her about it because I am in on it too. It is all about black magic and people from South America who want to take over the small town where she lives apparently.

So what to do? Social Care don’t want to know because she would not be eligible for a care package as she has some savings. That is fair enough, she is not wealthy, but could certainly afford to pay for care in the short term. Except that she won’t, because she doesn’t think she needs it. And this is where I get stuck. DH and I have offered for her to stay with us – even suggesting it as a temporary measure - but she won’t leave her home town.

She is frail and frightened, is really not coping and is in my opinion at significant risk of a fall or worse. I am really worried about her mental health, but am struggling to get her the care she needs because the system is “allowing” her to be unsafe. Her judgement appears very faulty to me but her decision making is accepted on the basis of a good memory. This can’t be right.

My one glimmer of hope is that after I pushed for mental health assessment, a very nice CPN has come out to assess her this week, and we are now waiting for him to discuss with his team and advising of their plan. I just hope that this has some impact.

I am really struggling – I am very frustrated that I am not able to arrange the care that I can see she desperately needs, and I am also on emotional rollercoaster. DM and I haven’t always been close, she has been pretty tricky at times over the years, and I have lurked for a long time on the Stately Homes threads, although never posted. I have been at the wrong end of some toxic and narcissistic behaviour, particularly as a child and teen but for the most part have moved on; focusing upon my own family and the life DH and I have created for ourselves. I now feel like I am being pulled back in, and to top it all DM as started apologising for the past. I don’t want this. I have moved on, but seeing her – fragile, lost and clearly frightened by things she doesn’t understand – it’s really hard, and I don’t know how to deal with it.

Thanks for reading. I’m going to post this and go to bed before I chicken out. If anyone has any advice or wise words I would be very grateful.

Hi OP, I was in a similar situation with my Dad, with him refusing to move out of a house he couldn't cope with (well, he would agree, but then change his mind). As Lindor said, what tipped it was that he had a minor fall, and my aunt persuaded him to go into a home for a two weeks stay to recover. Once there, he realised that he liked being looked after with three good meals a day, etc, and he stayed quite happily. So could you try to persuade her to go into a home for a week or two, for a 'break'?

The respite idea sounds lovely. (to me) but is a step too far for DM who remains fixated on continuing to live in her current town where there are no residential or nursing homes. She isn't even willing to try respite.

No news re the referral for Dementia with LB assessment - I am really hoping that will help to move things forwards, and am crossing my fingers that I am not being overly optimistic. My reasoning is that even if the diagnosis isn't confirmed the assessment should reveal the extent of her mental health issues. And someone will finally believe me.

It has been a difficult weekend, and I have just composed a long letter to her GP detailing my concerns. She was convinced that I was an imposter and wouldn't let me do anything for her. Her house is dirty and she looks unkempt. she tells me that she is managing to wash, and has washed her hair in the week, but I don't think that is true unfortunately. She also took an hour and a half to eat a small lunch and I wonder if she needs a swallow assessment. It is so hard to be objective. She has been eating slowly for a while now and because she has a history of difficult behaviour, I am afraid that I had assumed it was partly attention seeking. Now I wonder if I have missed something. Her clothes are covered in food spillages, which might suggest that she is missing her mouth, but I didn't actually observe anything untoward other than her being so slow.

I just want to be able to do something. To make her clean and comfortable, and less frightened, to tidy her house and put her in clean neat clothes. I know that her condition is likely to progress and that she might not allow me to do any of this for her, but it would be easier if I knew she was somewhere being cared for properly.

Hi butteredparsnips I sent a long reply yesterday, but there seemed to be another blip with the site and it's not posted.

I really feel for you. I remember we started surreptitiously helping dad (again, I appreciate our situation is different as both me and sis live fairly close by to dad so would pop in a couple of times a week anyway).

I would suggest a bath and he would say he'd had one yesterday. I got to the stage where I would run a radox bath and breezily tell him his bath was ready, as if we'd discussed it. The problem is, you need things to get worse before you can help with so many things.

Is there any chance you can at least have a discussion with the dementia care team at social services? Just to raise your concerns over her welfare and how you really need some intervention as are unable to ensure her safety and well being, given you're a distance away? Forgive me if you have done, I cant remember the detail of the earlier posts.

I'm guessing that with the suspicious tendencies, a home help or sheltered accommodation would also be refused at this point?

Hi, just reread your op, you said your mum agreed she can't quite manage as things are. Can you try suggesting somebody helps with 'cleaning' just 'until she's stronger again' and have somebody go in a couple of times a day to help with meal prep, tidying etc? We managed this as I think I said in a previous post, through a social services package, which we did pay for ourselves as dad is over the funding threshold currently (not sure for how long at £700 pw in a care home mind you...)

Hi Daisy
Thanks for your responses and kind words. Mum occasionally accepts that she needs help, but more often doesn't! I am trying out the gentle persuasion but with limited success. It is as if she accepts the theory that she needs help until it actually comes to accepting it.

Frustratingly she has savings - not huge amounts - but enough to pay for some carer input, but of course this means that she has to consent to paying for it and she will get to the brink of agreeing to it and then change her mind and tell me that its fine / she will be OK...
She has agreed that I can wash her hair when I go up at the weekend, but I realise that she may have changed her mind when I get there.
Still waiting to hear from the GP / memory specialist / CPN

yes, of course, by the time we got help in, we had poa in place, which made it easier. The memory clinic advised us to do it early on otherwise we would have struggled to get dad to understand. As it was I think we only just got it in time, of all my memories of this hideous journey, that one is the most poignant for me. Sitting in the reception of the solicitors office, dad looked so vulnerable, he was turning the envelope over and over in his hand. I just wanted to hug him and say everything's going to be ok. Role reversal at its worst, as I couldn't even give that reassurance. Sorry, I digress slightly.

I Remember the devastating realisation that we actually needed dad to get worse before we would be able to help him.

By the way, I keep meaning to head over to the ongoing support thread they have on here parents with dementia I think its called. Maybe I will see you over there one day!

I have taken a break from this for a while, as while DM has continued to deteriorate, there as been no progress with a care package. Despite increasing delusions and paranoid behaviour, her GP has steadily insisted that she has mental capacity based solely upon her memory. She has become to a danger to herself, and I have been really worried.

In the end I took her to hospital at the weekend. And refused to let her home. I used to take a dim view of people who dumped their relatives in A&E but I can now understand why they did. It isnt as if I havent tried to arrange a care package, but I havent been able to make anyone listen, and so I have now become a dumper too, and it feels pretty crap. I know that she is now safe but it has been a traumatic weekend.

My worry now is keeping her in Hospital, because of course she wants to go home. it is really sad, she looks lost and confused and thinks I have tricked her into going to Hospital, which to be fair I have. On the other hand though, there is no way I could have left her at home.

to anyone else going through anything similar to this. its very hard.

Hi buttered. I am so sorry you are going through this. I could have written your posts! My mum has just been diagnosed with Lewy body dementia and your mum sounds exactly like her! Can put in a show for the health professionals, can count backwards from 100 and knows the prime minister. She also thinks the neighbours are trying to kill her and have bugged her phone line. It took a long hospital stay for phychosis and a brain scan for them to finally diagnose her after sending us away from the clinic 3 times telling us nothing was wrong. I haven't read the full thread yet as I was so please to find it but I will do that now and will be back! Handholding