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.

Well that was epically epic!

I actually had a good nights sleep last night, the best one in a while , so I think it is fair to say that dumping it all here has its benefits. Thanks for sticking with it if you're still reading.

I am so sorry your words went unanswered last night-glad you slept well. I hope someone more knowledgeable than m e comes along but in the meantime I send you my sympathies for having to deal with this horrible situation.
Do you have any siblings to share the decision making?

Hello OP

We are just moving this over to the Dementia topic at your request.

hi Buttered,

so sorry you're going through this. I had similar some years back. Primary aged children to see to and my mother who was similar to how you describe yours. Similarly, social services weren't interested as she wasn't on benefits.

She was determined to stay in her house, but it reached a point where I could not cope anymore with her constant neediness/paranoia. My children would be home alone having cornflakes for tea while I sorted out the latest incident.

I cracked one day, and told the CPN I'd be on his casebook if he didn't help!
He persuaded her to go for a respite holiday for a few weeks to a local care home. She never looked back. Didn't remember her house or complain. It was best for everyone. She had company and care 24/7, and to a certain extent I got my life back.

The phase where you are at the moment is the hardest. Sometimes it feels like you're making a fuss about nothing as far as outside agencies go, but day to day it drags you down.

Sending you hugs. Hoping you find a better way forward soon x

Thanks for the replies. I'm an only child snice, and while DH, friends and family are supportive, it isn't the same as having siblings I guess. Lindor, what you have written about feeling like you're making a fuss about nothing to outside agencies is so true. At times they have managed to make me feel like I am making it up. I have even been told that DM is a very intelligent lady. That she may be - but she still needs help.

Thanks for the hugs and good wishes.

I have experienced exactly what you are facing with my own parents. I know many others facing the same dilemma.

Social service will not interfere until a crisis has been reached, and until that time the relation worries and frets and feels guilty that they are not doing enough.

The crisis they seem to wait for, is a fall, getting lost, creating a dangerous situation for others. In my mums case, her crisis resulted in a 5 week hospital stay and then a care home.I am sorry that I don't have any advice or the ability to get anyone to help you mum, just a sympathetic ear.

I can empathise with you Buttered - my own mum had a TIA (mini stroke) last year leading to some memory loss. She did make a bit of a recovery and things ticked along OK for a while - she lives in a sheltered housing apartment and we can drop in most days.
Quite a while ago she had a phase of paranoia and some strange behaviour and it turned out she had an infection and was dehydrated. with anti biotics and fluids she got better. Might we worthwhile ruling out any physical causes as well as having the assessment.
Florentina is right - usually a crisis forces things.

keep your chin up - it's a sign of how much you care about her that you're so worried. I'm an only as well so sympathise with you :)

I have been where you are and it is very hard I also belong on the Stately Homes thread it didn't realise how dysfunctional our relationship was and all the lies I had been told until a couple of years ago.

The whole issue of Capacity is a bit nightmarish. A friend who is senior in Community Mental Health saud recently she thought she understood it but was left doubting herself recently. You are totally right, the system is set up to allow the least restrictive option and allow people the choice to make choices that others deem unwise. The memory was the last thing to be really affected with my Mother.

One thing to do is keep a diary of incidents so that you can build up a picture of her behaviour. Eventually you will be able to get to the stage where you have evidence to show that although she appears to understand she isn't really as her past behaviour has shown that she says she doesn't really understand and is behaving in a way that makes her a danger to herself.

It's important to be very clear with professionals what you are and aren't prepared to do and follow up on writing to create a paper trail. My health started suffering and my GP told me to step back so I told anyone involved in her car who would listen. I also said I had a duty of care to my children and therefore couldn't do x,y and z for my Mother. I highlighted any behaviour that put her at risk and made sure that went in writing saying that I considered her to be a Vulnerable adult and her behaviour was. Safeguarding issue.

Sometimes sadly you have to take a step back and let a crisis happen before the situation moves forward, it is very hard and I feel for you

Hi as a pp above has said, I was going to mention a respite stay for a few nights in a care home. This can get the ball rolling as it were, get you in the system, and maybe something the cpn can help with. Do you have power of attorney in place yet? Tricky one to sort if your mum is in denial, but I would really recommend sorting it as soon as you can.

Dad finally moved to an emi nursing home earlier this year, 6 long years after Alzheimer's diagnosis. We actually had excellent support from social services. We were assigned a social worker a couple of years ago after dad was wandering. We had a care package in place of carers going in a couple of times a day to help with meal prep etc, although the last year or so me and sis were there with him between us all day. We paid for the care package, so your access to social care shouldn't be dependent on funding.

Dad is self funding at the home, but this didn't affect our access to a social worker- once you've had your cpn assessment you may be able to push for a social worker, especially given the distance you are away.

It's not easy juggling it all. Even now dads in the home it's still challenging. I'm a SAHM at the moment (dcs 8,6 and 9 months) and my sis has a full-time job and I think we're both still feeling the strain of the last couple of years.

I don't think my post has anything useful in it, sorry I feel I'm waffling, but based on what our experience has been, please ask any specific questions I might be able to help with.

Also, if I'd known then what I know now, I would have started looking for a care home long before we felt dad needed it. Dad was physically very fit, still is to a degree and no other medical issues, so different to your mum. But, we started looking for a home when we needed him to be in one, when we finally found one we were happy with, it had 16 people on the waiting list! Dad had a few nights respite there and they found him too challenging.

The cpn and social worker then reassessed him as needing emi nursing rather than emi residential (based on needing more supervision). So, a whole different set of homes to look at, again with waiting lists. And, something I hadn't realised, once we had chosen the home we were most happy with, the home then came to do an assessment of dad to see if he was suitable! So it wasn't as straight forward as just finding one. Forgive me sounding so negative, but just to say the process can take a while.

Again though, the social worker helped us through this process, even though dad was self funding. Our crisis point was me being pregnant and it not being safe - dad would walk for miles, and would also try to return to his family home, and my sis couldn't take any more time off work and dad couldnt be left on his own any longer.

Thank You All. It's heartening to hear that others have experienced similar, though sad too that so many people are affected. I certainly fear a crisis florentina1 - and to some extent I can see it coming - but feel powerless to prevent it. Of course this is where some of the guilt comes in. I cant be there very much but feel responsible.

Good advice about documenting - thank you sugarplum I can see that I am going to need to be persistent. Although DM is the priority here, I am already aware of the impact it is having on my own mental health; my concentration is shocking and my own family need me to be there for them too. I am thinking of asking for an occupational health referral at work to see if I can get some support through this.

Interested to hear that you were allocated a social worker daisydalrymple, when I rang Social Care, they advised that DM didn't fit their criteria and they wouldn't get involved. I might try to revisit that now. I have suggested POA before but DM refuses to agree to this, either for health or finances. In fact paying bills is now a challenge, as she also refuses to have any truck with telephone or online banking, but is physically unable to write cheques due to shaky handwriting. Oh and she has never had a direct debit in her life so I cant event set that up for her to pay for things like utilities.

I asked DM last night how she was feeling after seeing the CPN earlier in the week; she told me that she thought he was fake and I had been taken in by him. She believes that he had been sent to spy on her, and has somehow linked it to a phone-call from EON electric (presumably a sales call), but DM has linked this call to the CPN visit and thinks it is some sort of diversionary con-trick.

we are in wales butteredparsnips, so I don't know if it's different. We also had a lot of support from the Alzheimer's society local branch, they came out and gave lots of guidance to help out there. Appreciate this might not be available yet without a diagnosis, but I've often seen age concern recommended on these threads. They might be worth an initial phone call at least?

Do you have access to the cpn yourself and will they provide you with feedback?

I have a general phone number for the clinic where the CPN is based so I could ask for a call I'm sure. Actually hadn't thought of calling Alzheimers - although that really should have occurred to me, given that I work with them on occaisions Certainly worth a phone call.

As far as I recall Alzheimer's society contacted us once we had a diagnosis, I honestly don't think I would have thought to ring them either otherwise. They were incredibly helpful at the beginning though. Do feel free to pm me at any time with any questions I may be able to answer. I'm not an expert but am certainly happy to share what we've been through etc. it's a horrible disease.

Another brilliant contact is AgeUK. Not only great practical advice and leaflets but truly wonderful sympathetic people. I'm am not a cryer, but their kindness and support had me in tears. I think it is the relief of having someone to talk to who understands what the relatives are going through.

My parents LA were very good once their needs were acknowledged, but they are so stretched.

Sorry to hear what you're going through. We were there about 18 months ago. We didn't get much help. We hired a private care firm for 4 hrs a day initially for 5 days, then 3 hrs a day for 6 days. That helped a lot. They took her out and tired her out each day, then cooked her evening meal and tried to persuade her to have a bath. Just the regular meals helped a lot. We're now at the stage where she's wandering and we want her safe at night, so have arranged a care home. She thinks she's going there for two weeks while we're all away(doesn't want to, thinks she's young and can cope alone or her mum will come). That's not going well either. The home aren't coping.

It's so difficult and upsetting.

Honey I agree it is so difficult and upsetting and so many people affected by it. I hope your DM settles into her care home better.

I am hoping from what other posters have said that things improve for DM if/when we can get a diagnosis. Until then it feels like I am going round in circles.

DM has been mithering about the gas (she only has it for her oven - her water and heating is electric) so I have lent her a mini oven that we no longer use and put it on her kitchen worktop. To be honest this might not have been my best idea - she doesn't take well to new things at the best of times - and so I should have been prepared for her antipathy towards it. Instead of it making life easier as I had hoped, she has decided that she doesn't like it where I have put it and would rather it was in her utility room. In the sink! Scarily she cant understand why I don't think that would be safe.

How anyone can think that it is safe to leave someone who thinks a sink is a good place for an electric oven just because she passed a mini mental state examination?

The difficulties occur when the professionals only see a snapshot, my Mum can appear to be normal, coherent and understanding during their visit or consultation. then struggling to recall any information or even if it took place when asked even an hour later. all services in our area are stretched, getting any support has had to be from a crisis point, not helped with mums young age. we now have a lewy body diagnosis but unsure if this will make it easier or harder to access help

Trouble is, the MMSE isn't always the best test to perform. My mums dementia affected her speech, language and visual recognition first, so when first seen by the dementia team (after a fight to get her seen), her MMSE wasn't too bad, but her MOKA score was awful - reflecting her particular impairment, and the parts of her brain primarily damaged.

It was really hard to get any social services involvement for my parents. TBH, they are obviously so overstretched that they can only fight fires.

I hope the CPN can help.

Hi I agree CMOT the MMSE isn't always the best test to perform, it doesn't capture the areas where she has deficits, and that is why I am so alarmed that her health professionals think she is OK. They are not considering the full picture.

I have spoken to her GP today, and made him aware of what I am concerned her diagnosis may be. emark - I fear she may have Lewy Body Dementia too, she certainly has most of the features. I am sorry to hear about your Mums diagnosis, especially at a young age. Its a very cruel disease GP has agreed to refer for further investigation, but I got the impression that my intervention was not welcomed and that he agreed to it to make me go away ... but I saw her 4 weeks ago and she was fine. er no she wasn't. she just covered it up well.

Also no news from the CPN - and GP hasn't chased. Suggested I did it instead - which of course I have done - but really is it too much to ask her Primary Health Care professional to do it! Anyway the CPN wasn't on duty and seemingly no one else can tell me anything. I have left a note for him to ring me tomorrow.

its a long haul isn't it?

Oh I really feel for you. One thing we did, which I didn't mention earlier I don't think, is to keep a diary. We just used a day to view one, and wrote down how dad had been that day. Now admittedly, one of us was with dad all day and then the other would take over, and I know you have the distance issue, but it might be an idea for you to note down the different things your mum says or you notice happening? Then you have a long list next time you encounter another 'she was fine when I saw her' comment?

For us it was things like dad had a good laugh with the fella in the mirror. Dad was in a bad mood this morning, wouldn't eat breakfast. Dad wearing three jumpers with vest on top, no socks but spare pair in pocket.

Can you prime the GP
with small talk questions to ask DM which will reveal her paranoia. I don't know but maybe "are there any other people living anywhere in your house?" "You've been living in village X for a long time now, I suppose you've seen some changes?" Or just asking about the CPN.

Best wishes. I've got related but very different issues and I feel for you."

The diary suggestion sounds like a good one. I spoke to a relative earlier who said she had found Mum to be very confused. I then rang her this evening and had a normal, pleasant conversation. It is this variation that adds to the complexity. If she was consistently confused then it would be easier to convince her health care team. Instead, they see her, often at her best and it doesn't fit the picture I am trying to describe. At times I question it too. How can someone who can articulately discuss the news be affected by hallucinations?

A diary would be a useful record wouldn't it? Not just to share with HCP but for me too. It would be a prompt too as you suggest Frances for others to probe further.

Thank you. it us food for thought.