Need to vent!

[malcolmc]

Sitting here with strange set of emotions; seething, sadness, helplessness....

My wife and I drove 180 miles for our monthly visit mum last Sunday, staying four days to do some home maintenance, do her shopping, take her to optician appointment, fixed a "whistling" on her phones sort out a visit to fix her faulty gas smart-meter, thoroughly clean her kitchen floor (mum's cleaner doesn't seem to have done a decent job of it) etc, etc. Found out when we were there that my 89 year old mum had been frequently getting out a step-ladder to access her electricity cupboard to move the trip switches as she believes she needs to do this to adjust her central heating and hot water. Over the past month, Lifeline have turned out, due to the mains to her base unit being cut-off, plus neighbours/friends have noticed her house in the dark at night and have called round to find all the trip switches were off. I sought advice, including a post on here, and decided the only thing I could do before driving home yesterday was to fit a combination padlock on the door to the cupboard. When I told mum this she went ballistic, "how do I switch on my hot water and heating if I can't get in there". Any quiet explanations have been met with mum raising her voice and saying, "I know what I'm doing, how can I turn on the hot water unless I can get into the cupboard?"

On our journey home yesterday I received a call from a family friend to say mum had contacted them to say she had a problem with her heating and she needed to get into the cupboard to fix it. The friend went round and showed mum that nothing was wrong but was so concerned about mum's agitated state that they called me.

This morning mum's carer visited, as she does every day. Mum normally lets her in but said she couldn't find the key. The carer had to use the key-safe to gain entry. Mum said that "my son and daughter-in-law had locked her in and taken her door key when they left yesterday"! Needless to say, the carer found mum's key in her handbag. The carer also found a pair of pliers lying about (now hidden away) which she suspected mum had been using to try and break into the locked cupboard.

I have a webcam in mum's conservatory and this morning mum's hairdresser visited. The hairdresser is aware of the camera (mum is oblivious to it, even though she was in the room as I told her I was installing it, with her permission, following a number of falls). This morning I have have witnessed some hurtful and awful things said about myself and my wife. I know it's all a result of her vascular dementia, but to hear blatant lies spoken by my mother to others about oneself is very hard.

Mum also admitted she had tried to "force" her way into the cupboard to fix the hot water!

Just wanted to vent and share this with others who may be going through something similar, the process is somewhat cathartic as I'm a little less emotional now.

Just what I needed before I go to my dentist at 12.20 today, suspecting I am going to need root canal treatment and a hefty bill to go with it

 

[cragmaid]

Can I ask you to read this post again as if you were a first time reader and not the author?
The family live a long way away and can only manage a few days each month ( not a criticism....honestly) due to their circumstances. 89 year old Mother climbs up a step ladder to " fix" her hot water at the electricity meter. She makes up stories about her maltreatment, is prone to falls, does not have a hygienic cleaner, calls on neighbours constantly, sits in the dark because she cannot comprehend that she is turning the electricity off...... oh and deniies that she cannot manage.

I'm sorry, but I have to say that I think that her time of living independently is at an end for her own sake. She is not safe. I went through a similar battle with my Mum.... her particular trait was wandering ( sundowning), but I was the lucky one ( compared to you) I lived walking distance away!!( I didn't call it lucky at the time!!!!!)

 

[Slugsta]

Hi Malcolm,

I am so sorry that your mum's dementia is causing so much trouble for you all I do agree that it sounds as if she is no longer safe to live alone, possibly at all but certainly without a lot more help.

Have you/she had an assessment by a Social Worker to see whether there is anything that can be provided to help? It might be that carer visits 4 times a day (for instance) would be able to keep things going for a while. However, I think now might be the time to start investigating care homes on your mum's behalf. Does she have any friends or family in the area in which she currently lives? Looking at somewhere much nearer to you could help the situation considerably!

 

[malcolmc]

Hi Maureen and Slugsta - thank you for your responses, it's so good to get other perspectives on the situation with mum.

In fairness to mum, my "venting" focused only on the negatives of the past few days. Mum is able to get herself up, get dressed, get her breakfast and microwave her other meals. She manages her own hygiene, washes her clothes when needed and always looks presentable. She takes her meds on time and manages to get to a local convenience store to get her shopping. She does have a daily carer visit, but that's mainly because she has two compression stockings on each leg and mum hasn't got the strength to get them on. The carers also give me peace of mind in knowing there is a daily check on mum and her surroundings and will phone me if there are issues.

I had a Social Worker do an assessment some months ago and the conclusion was "low risk" and when you looked at all the tick boxes on the assessment I wondered if I was wasting everyone's time

This "Electric Cupboard" issue has appeared out of the blue in the past month and has become an obsession she simply cannot forget. Hopefully, by locking the cupboard, she is now "safe", albeit she is extremely unhappy with me about it.

I'm acutely aware that mum's level of confusion is getting worse and there will become a point where she cannot live on her own, it's just judging that point. I don't think we are there yet and she would fight tooth and nail to stay where she is. Social Services "tick box" assessment will show she is able to do the necessary daily things (at this time), so I'm "saving" my energy until things are more clear cut.

I have identified a Care Home near me and intend to get in touch with them next week to start to see what I might need to do.

Mum has no other close family in the UK, it's all down to me. My brother is in Australia and I keep him appraised via email and telephone, but he realises he can't offer much help and is happy for me to make all the decisions.

 

[Rosettastone57]

Sitting here with strange set of emotions; seething, sadness, helplessness....

Hi Sorry to say that the hurtful remarks all sound normal behaviour to me for PWD.
In fact my MIL even says these things to others whilst I'm present.

I agree with others on here it sounds as if she needs at least more carer visits to keep her calm. This will give you more peace of mind if nothing else.

 

[Onlyme_]

Hi, ditto the above. I'm coming to realise this is all 'normal' dementia behaviour. Had a similar situation with my mom from about Nov to Jan - her 'electric cupboard' was the TV and the remote control. We simplified it by unplugging the Virgin media box and going back to Freeview but she still couldn't manage despite clear written instructions and phoning us about 20 times a day. She even managed to stand up on chair and find the old remote control we had hidden on top of the wall unit, thinking it would help. She had a carer going in twice a day and would often tell them not to bother doing her food, showering her, etc because she could manage. A fall in early Feb landed her in hospital where she still is and when we went to her house we realised that she hadn't been managing at all. She's now heading for a care home when she leaves hospital. Things can happen quickly so it doesn't hurt to consider other options now, even if you think she is managing ok at the moment. Good luck with everything x

 

[Slugsta]

Malcolm, how good are you at 'handyman' type stuff? Could you 'mock up' some kind of circuit board for your mum to fiddle with while the real one is safely locked away?

 

[LadyA]

And at least if you put things in line of sight now- ie, start looking at care homes, finding what's available/suitable, you won't be caught off the hop if things suddenly escalate, and you have to move your mum to full time care fast. This way, you have choice and input. If it hits crisis point and Social Services step in, you might have to take whatever is available right then that they deem suitable.

Sent from my Moto G Play using Talking Point mobile app

 

[malcolmc]

Thank you everyone - all good points. I have some time next week so a Care Home visit is a definite to at least see what the future might hold.

The "dummy circuit board" idea made me laugh (thanks, I needed that). I am an ex electronics engineer, so will think about that one

Luckily, dental appt for me revealed I can get by for a few months on temporary filling, no root canal work needed for the foreseeable, "just" a crown, so a few £hundred less that I feared!

Right, off to local theatre with my ever caring wife to take my mind off things until tomorrow

 

[malcolmc]

Oh dear! Call from mum's carer this morning to say that mum has broken the lock off the electricity cupboard to gain access (although it appears she's not done anything in there, yet?)

Mum said she needed to get into the cupboard to "fix" the hot water (which is working fine). The carer tried to explain the dangers of electricity in the cupboard and that there was nothing to fix the hot water in that cupboard but mum was having none of it. The carer explained to mum her CH and Hot Water "over-ride" buttons (for the nth time) but mum got agitated, raised her voice and was very rude to her carer.

Thinking my next course of action is to call Social Services as I now have a safety issue and maybe her doctor to advise him of her changed behaviour.

I'll be calling a local (to me) Care Home this morning to arrange to visit and speak with someone about my mum.

Any other suggestions on things I can/should do?

 

[Margi29]

Hi Malcolm C

Your starting post echoes so much of two days ago it could have been me writing it.
I did a post on Can I ...Should I ??? Thread of the scenario.

It's awful listening to mum been loud, making up things etc... took me ages to calm down. I was at the point of ENOUGH and was going to tell my brother and sister to take over everything with mum. Thankfully that feeling has passed

Have you considered possibility of sheltered housing for your mum ?? With carers going in couple of times a day ?? Maybe one near you??
We had to do this for mum, she was getting worse at her own home and also lived over 80 miles from us. Too far to just pop round in a crisis.

Mum like yours can wash and dress herself, make drinks, basic foods, does her medication (dossit box ) cleans in a fashion
Where mum is she has no access to any electronic boxes etc... all heating charges are in with her rent ( approx £450 per month) there is a call system in place, and someone calls her (or goes to flat ) to check she's ok.

The alternative as in a ch would have broken mums heart, although it still could be a possibility in the future as mum gets worse with disease, if we can not cope

Trust me, the obsession with 'the electric cupboard ' will go, to be replaced by a different obsession, happens on a regular basis round here.

 

[malcolmc]

Thanks Margi29, I've just looked at your post re the confabulations and I can see you were going through something similar. Everyone tells you it's all part of the PWD disease progression, but it's still hard to take. With time it'll seem more "normal" I suppose

I did a very quick look at some council run sheltered housing only 200yds from where mum currently lives. I did enquire about a possible future place for mum there about a year ago and "discounted it". I do recall they had a long waiting list and her circumstances meant she would be a low priority for a place. Prompted by your suggestion though, I have just phoned the manager at the site and it's a possibility, but I will need mum's GP to help out with a supporting letter (I'm sure he'll do that) and I have to register with the local authority and "bid" for various homes. Looking at the priority bands, "Emergency, Gold, Silver, Bronze" I'm pretty sure mum would fall into the Silver category. Having spoken to the manager of the site though, I'm not sure whether it would be suitable as the council no longer have wardens on site, only a 24/7 control centre which can be called. Not sure this would be much of an improvement over where she is with her current "Lifeline" service?

 

[jugglingmum]

When things went pop with my mum, I looked at both sheltered and sheltered extra care, the sheltered places near me weren't suitable for mum, and there was a nice sheltered extra care place. Mum didn't understand why she couldn't go home(long story - we couldn't let her return to her house at all, in part due to hoarding), but was aware enough to realise I wasn't arguing. She had a lot of classic anxiety behaviour whilst she stayed with myself and my brother, and on visits to mine prior to that, but the simple layout of the flat has been reassuring for her, and she has been there 3 years now.

If your mum is getting anxious she will need quite a bit of support.

Your mum is at the point where someone needs to accompany her to every Drs appt, etc, and I would suggest now is the time to move her near you unless she has significant contact from an existing friends circle.

 

[Amy in the US]

Malcolm, hello, and if nobody has said it, welcome to Talking Point.

I hope you feel better after your vent and remember, TP is always open, stop by anytime to let us know how things are.

I also hope things continue to be okay on the dental front.

I'm sorry to hear about the situation with your mother. I'm a former long-distance carer myself. Although I was only 1.5 hours away, the trips were very tiring, especially as I was averaging 3-4 times per month before my mother moved. My mother had a crisis, underwent the US version of sectioning, and is now in a care home 15 minutes from where I live.

I would say that judging from what you've said, it sounds like more support is a very good idea.

I can't pretend to understand the UK system very well, but do know there are many people here on TP who have, or have had, a PWD (person with dementia) in some type of sheltered housing. My understanding is that a key feature of this is an on-site manager or warden, so I am not sure it would be helpful without the staff person.

I would think being on a waiting list surely could do no harm? Generally there is no requirement to take a flat/space at a care home when one becomes available, you can refuse the space and just stay on the waiting list.

JM has broached the topic of moving and while I know it can be complicated in terms of changing doctors, Local Authorities, the move itself, et cetera, it is a HUGE relief to have my mother geographically closer to me. I would have had a much harder time managing both her daily needs and the crises/accidents/hospitalizations, if she were still in her home city. In my mother's case it was an easy decision (on paper) as I am the only family and while my mother had great neighbours, she had no friends and there were not going to be many people visiting her. In all honesty, I wish I had moved my mother into full time care a lot sooner than I did, as she is not only safe, but also much more content, in her care home.

Nothing about dementia is ever easy. I found it a huge learning curve and the delusions and confabulations, even though I'm more used to them now, can still throw me for a loop. Often while I'm with my mother, and she is deep in a delusion, I find myself reacting appropriately verbally and with my body language to her (because I do not want to agitate her or make things worse), but sort of screaming inside my head about the insanity of it all. If that makes sense.

Even though I understand it's the disease, and that her brain is damaged and there are things she cannot do, understand, or remember, it is hard to accept, and often very challenging not to try to make normal conversation or make a logical or reasonable response. It takes a lot of training.

Sorry for the digression there. It really is hard, and I'm sorry.

I hope you're able to find some support, for yourself as well as your mother, and see a way forward. Best wishes and hope to see you "around" on TP.

 

[BJS]

Malcolm, hello, and if nobody has said it, welcome to Talking Point.

I hope you feel better after your vent and remember, TP is always open, stop by anytime to let us know how things are.

I also hope things continue to be okay on the dental front.

I'm sorry to hear about the situation with your mother. I'm a former long-distance carer myself. Although I was only 1.5 hours away, the trips were very tiring, especially as I was averaging 3-4 times per month before my mother moved. My mother had a crisis, underwent the US version of sectioning, and is now in a care home 15 minutes from where I live.

I would say that judging from what you've said, it sounds like more support is a very good idea.

I can't pretend to understand the UK system very well, but do know there are many people here on TP who have, or have had, a PWD (person with dementia) in some type of sheltered housing. My understanding is that a key feature of this is an on-site manager or warden, so I am not sure it would be helpful without the staff person.

I would think being on a waiting list surely could do no harm? Generally there is no requirement to take a flat/space at a care home when one becomes available, you can refuse the space and just stay on the waiting list.

JM has broached the topic of moving and while I know it can be complicated in terms of changing doctors, Local Authorities, the move itself, et cetera, it is a HUGE relief to have my mother geographically closer to me. I would have had a much harder time managing both her daily needs and the crises/accidents/hospitalizations, if she were still in her home city. In my mother's case it was an easy decision (on paper) as I am the only family and while my mother had great neighbours, she had no friends and there were not going to be many people visiting her. In all honesty, I wish I had moved my mother into full time care a lot sooner than I did, as she is not only safe, but also much more content, in her care home.

Nothing about dementia is ever easy. I found it a huge learning curve and the delusions and confabulations, even though I'm more used to them now, can still throw me for a loop. Often while I'm with my mother, and she is deep in a delusion, I find myself reacting appropriately verbally and with my body language to her (because I do not want to agitate her or make things worse), but sort of screaming inside my head about the insanity of it all. If that makes sense.

Even though I understand it's the disease, and that her brain is damaged and there are things she cannot do, understand, or remember, it is hard to accept, and often very challenging not to try to make normal conversation or make a logical or reasonable response. It takes a lot of training.

Sorry for the digression there. It really is hard, and I'm sorry.

I hope you're able to find some support, for yourself as well as your mother, and see a way forward. Best wishes and hope to see you "around" on TP.

Wow - brilliantly said
.... it is hard to accept, and often very challenging not to try to make normal conversation or make a logical or reasonable response....
just what I am experiencing. So very very hard

 

[missmole]

Totally sympathise! We have gone through similar things with my mum, mostly to do with the TV and remote controls. However, it doesn't sound as if your mum needs to go into a care home at present if she can still cook, dress herself etc. although there is obviously a safety issue. I think the fake circuit board idea is a really good one if you can do something. I found with my mum that she gets certain obsessions for a while and we somehow manage to distract her and then she calms down (until the next obsession!).Unfortunately, reasoning doesn't really work so you have to be a bit ingenious.