• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

Barely 24 hours into this crisis and at my wits end already

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
So, we have a bit of a crisis on our hands and it is my worst nightmare. Not mum who’s fallen and had to go to hospital, but my Dad.

This happened yesterday afternoon so I had the 4. 5 hour drive from Essex to Wales, and now it’s just me and mum in the house. Dad is likely to be in hospital for some time it seems, no broken bones but now he’s been formally assessed it’s clear his mobility is extremely poor and he needs a lot of physio to have any hope of being considered safe enough to go home. He has a severe UTI so that need to be cleared before they can fully assess him.

I must say mum’s social worker has been pretty well on the ball. I made it clear straight away to the carer who came this morning that I cannot stay here for more than about five days at a time and will need to go home for about that length of time between visits. She completely agreed and said she would make a report accordingly to the care manager. They immediately got the social worker on the case and arrangements are in place for three support visits a day to Mum starting on Friday. Her main need is for support with getting food prepared and reminding about drinks. Shopping and laundry I can organise, and there is already a cleaning lady. I am not telling mum about this in advance, just planning to welcome whoever turns up on Friday with a big smile and say look, these kind people are going to pop in to make sure you have everything you need when I go home tomorrow. I am worried that she will not cope but she has already refused to even think about going to a care home temporarily and is considered to have capacity to make that choice. I am worried but having read so many of the threads here, I think this is the best approach. The carers are very professional and will report any concerns they have to social services and that seems to work better than family members trying to hold it all together.

However...I am not coping well with some of Mums delusions. I know we are supposed to enter the PWD’s world and all that but I just can’t. She is insistent that the neighbours have demolished the dividing wall between the two houses at first floor level and have been putting crockery in the top of her wardrobe (which is fitted to that wall so would have collapsed had any demolition been going on!). And that they are working on the wall all night now they’ve been told to rebuild it. The house next door is actually unoccupied and she is so profoundly deaf that I have to bellow at her from a few feet away to have any chance of being heard! She has started to go into a lot of highly inappropriate detail about my dad‘s intimate life, which I deal with by getting up and going off to do something else. Plus her fixation that I have taken control of their finances and transferred everything including the house to my name, this is pure fiction and I just cannot go along with it. She claims of course that my father has told her I have done this with his blessing, again pure fiction. Any ideas for how to deal with this better, because at this rate I’ll be ready to kill her by Friday! Leaving the room for 10 minutes then returning with a smile and a suggestion of a coffee or choosing what to have for dinner does help temporarily until she starts the repeat performance.

She has no empathy for my Dad’s current situation and wants to me to go and collect him so he is here to look after her. At least I can truthfully say that I cannot do that because I’m not allowed to enter the hospital, though this is making the whole situation more difficult as he has no means of communicating with us except through the nurses.

Sorry for the rant, I know this is nothing compared with what many of you deal with daily, year in and year out, but my relationship with mum has always been a bit fiery and this situation brings out the worst in both of us, I think.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,763
Nottinghamshire
I’m sorry to hear about your dad. I hope he makes a speedy recovery.

At least you now know how bad your mum is and what your dad has to cope with which means you can work with SS to get a care package which will work for both your parents.

The “alternative universe” living is something I experienced frequently with my dad and I found the best way to react was either to “deal with” the situation as he saw it or leave the room and come back with a distraction. It wasn’t easy and I understand how stressed it’s making you feel.

In your situation I’d be transferring the property etc. back probably using a friend to act the role of “solicitor “ but then I got very good at lying to my dad for a quiet life...

I found that once dad was convinced something had been dealt with “officially” he forgot about it.

Good luck!
 

Agzy

Registered User
Nov 16, 2016
1,519
Moreton, Wirral. UK.
So, we have a bit of a crisis on our hands and it is my worst nightmare. Not mum who’s fallen and had to go to hospital, but my Dad.

This happened yesterday afternoon so I had the 4. 5 hour drive from Essex to Wales, and now it’s just me and mum in the house. Dad is likely to be in hospital for some time it seems, no broken bones but now he’s been formally assessed it’s clear his mobility is extremely poor and he needs a lot of physio to have any hope of being considered safe enough to go home. He has a severe UTI so that need to be cleared before they can fully assess him.

I must say mum’s social worker has been pretty well on the ball. I made it clear straight away to the carer who came this morning that I cannot stay here for more than about five days at a time and will need to go home for about that length of time between visits. She completely agreed and said she would make a report accordingly to the care manager. They immediately got the social worker on the case and arrangements are in place for three support visits a day to Mum starting on Friday. Her main need is for support with getting food prepared and reminding about drinks. Shopping and laundry I can organise, and there is already a cleaning lady. I am not telling mum about this in advance, just planning to welcome whoever turns up on Friday with a big smile and say look, these kind people are going to pop in to make sure you have everything you need when I go home tomorrow. I am worried that she will not cope but she has already refused to even think about going to a care home temporarily and is considered to have capacity to make that choice. I am worried but having read so many of the threads here, I think this is the best approach. The carers are very professional and will report any concerns they have to social services and that seems to work better than family members trying to hold it all together.

However...I am not coping well with some of Mums delusions. I know we are supposed to enter the PWD’s world and all that but I just can’t. She is insistent that the neighbours have demolished the dividing wall between the two houses at first floor level and have been putting crockery in the top of her wardrobe (which is fitted to that wall so would have collapsed had any demolition been going on!). And that they are working on the wall all night now they’ve been told to rebuild it. The house next door is actually unoccupied and she is so profoundly deaf that I have to bellow at her from a few feet away to have any chance of being heard! She has started to go into a lot of highly inappropriate detail about my dad‘s intimate life, which I deal with by getting up and going off to do something else. Plus her fixation that I have taken control of their finances and transferred everything including the house to my name, this is pure fiction and I just cannot go along with it. She claims of course that my father has told her I have done this with his blessing, again pure fiction. Any ideas for how to deal with this better, because at this rate I’ll be ready to kill her by Friday! Leaving the room for 10 minutes then returning with a smile and a suggestion of a coffee or choosing what to have for dinner does help temporarily until she starts the repeat performance.

She has no empathy for my Dad’s current situation and wants to me to go and collect him so he is here to look after her. At least I can truthfully say that I cannot do that because I’m not allowed to enter the hospital, though this is making the whole situation more difficult as he has no means of communicating with us except through the nurses.

Sorry for the rant, I know this is nothing compared with what many of you deal with daily, year in and year out, but my relationship with mum has always been a bit fiery and this situation brings out the worst in both of us, I think.
Your post is not a rant @CardiffGirlInEssex , but shows what we, who are early in our journey dread, an to be honest from past experience I know I wouldn’t cope as well as you appear to be. Your mums delusions would really worry me if my OH, Pauline, had them as her sons would accept them at face value just to try and get me out of the way and to both dump her in a sheltered flat and access her money. @Bunpoots reply is also an eye opener into these delusional episodes which leads me to aske which dementia has Mum got? My Pauline has Alzheimer’s and that seems to have just the “usual”, memory loss, confusions and mood swings as the main features up to now. I hope that all the help and care needed is provided and helps.
 

canary

Registered User
Feb 25, 2014
13,417
South coast
Oh @CardiffGirlInEssex , what a mess. Im so sorry to hear about your dad.
Yes, the crisis has well and truly come.

Im actually very concerned for you and Im wondering how long you will be able to commute between wales and Essex every 5 days (even Gavin and Stacey didnt manage that) as well as caring for your mum 50% of your time. I really dont think its going to be sustainable in the long term and you may have to step back and get more carers in. It may well be that your mum will have to move to a care home in order to keep her safe, despite her wishes.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
I’m sorry to hear about your dad. I hope he makes a speedy recovery.

At least you now know how bad your mum is and what your dad has to cope with which means you can work with SS to get a care package which will work for both your parents.

The “alternative universe” living is something I experienced frequently with my dad and I found the best way to react was either to “deal with” the situation as he saw it or leave the room and come back with a distraction. It wasn’t easy and I understand how stressed it’s making you feel.

In your situation I’d be transferring the property etc. back probably using a friend to act the role of “solicitor “ but then I got very good at lying to my dad for a quiet life...

I found that once dad was convinced something had been dealt with “officially” he forgot about it.

Good luck!
Thank you, @Bunpoots, that's an interesting idea about "getting it transferred back". If the house thing continues I may try a version of that I also think I will be popping out of the room quite frequently! There is plenty for me to do around the house so I shall try to distract us both with that.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
I’m sorry to hear about your dad. I hope he makes a speedy recovery.

At least you now know how bad your mum is and what your dad has to cope with which means you can work with SS to get a care package which will work for both your parents.

The “alternative universe” living is something I experienced frequently with my dad and I found the best way to react was either to “deal with” the situation as he saw it or leave the room and come back with a distraction. It wasn’t easy and I understand how stressed it’s making you feel.

In your situation I’d be transferring the property etc. back probably using a friend to act the role of “solicitor “ but then I got very good at lying to my dad for a quiet life...

I found that once dad was convinced something had been dealt with “officially” he forgot about it.

Good luck!
Thank you, @Bunpoots, that's an interesting idea about "getting it transferred back". If the house thing continues I may try a version of that I also think I will be popping out of the room quite frequently! There is plenty for me to do around the house so I shall try to distract us both with that.
Your post is not a rant @CardiffGirlInEssex , but shows what we, who are early in our journey dread, an to be honest from past experience I know I wouldn’t cope as well as you appear to be. Your mums delusions would really worry me if my OH, Pauline, had them as her sons would accept them at face value just to try and get me out of the way and to both dump her in a sheltered flat and access her money. @Bunpoots reply is also an eye opener into these delusional episodes which leads me to aske which dementia has Mum got? My Pauline has Alzheimer’s and that seems to have just the “usual”, memory loss, confusions and mood swings as the main features up to now. I hope that all the help and care needed is provided and helps.
Thank you, @Agzy, and your situation sound worse, if close family members would believe the delusions and act on them. That's really tough.

Mum has Alzheimer's with some vascular involvement, diagnosed 2 years ago. This time last year she was just starting a prolonged spell in hospital which definitely caused a big decline in her condition. She also has worsening heart failure, and I am kind of hoping that is going to carry her off before the dementia gets a lot worse.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
Oh @CardiffGirlInEssex , what a mess. Im so sorry to hear about your dad.
Yes, the crisis has well and truly come.

Im actually very concerned for you and Im wondering how long you will be able to commute between wales and Essex every 5 days (even Gavin and Stacey didnt manage that) as well as caring for your mum 50% of your time. I really dont think its going to be sustainable in the long term and you may have to step back and get more carers in. It may well be that your mum will have to move to a care home in order to keep her safe, despite her wishes.
Thank you, @canary, I always find your posts comforting when I see them on other threads, as well as this one. I don't envisage doing the 'commute' for too long, as I suspect it will become clear fairly quickly that a care home is needed, possibly for both of them. I don't want mum to feel completely abandoned straight away, but she is more likely to admit to needing more help if I am not around too much. We will see what happens over the next few weeks. At least I'm not trying to keep an employee happy as well! But my husband is also in his 80s and although he's in good health, I can't just abandon him either.
 

Weasell

Registered User
Oct 21, 2019
551
Thank you, @Bunpoots, that's an interesting idea about "getting it transferred back". If the house thing continues I may try a version of that I also think I will be popping out of the room quite frequently! There is plenty for me to do around the house so I shall try to distract us both with that.
Thank you, @Agzy, and your situation sound worse, if close family members would believe the delusions and act on them. That's really tough.

Mum has Alzheimer's with some vascular involvement, diagnosed 2 years ago. This time last year she was just starting a prolonged spell in hospital which definitely caused a big decline in her condition. She also has worsening heart failure, and I am kind of hoping that is going to carry her off before the dementia gets a lot worse.
I have a mother of over ninety with heart failure and vascular dementia.
If it is supposed to carry her off rapidly she has failed to read the manual.
My advice is to allow for her to be around for another few years as you plan the future. I think it will make your life easier.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
I have a mother of over ninety with heart failure and vascular dementia.
If it is supposed to carry her off rapidly she has failed to read the manual.
My advice is to allow for her to be around for another few years as you plan the future. I think it will make your life easier.
She had two mechanical heart valves implanted in June 1993, they came with a 25 year guarantee. We laughed about that at the time, she said it would be nothing short of a miracle if the rest of her held out that long. She is now in year 28 so definitely out of warranty on all fronts!

It is very possible though that at least one of those valves is starting to fail which I understand has a somewhat different prognosis from heart failure without that element.
 

Weasell

Registered User
Oct 21, 2019
551
She had two mechanical heart valves implanted in June 1993, they came with a 25 year guarantee. We laughed about that at the time, she said it would be nothing short of a miracle if the rest of her held out that long. She is now in year 28 so definitely out of warranty on all fronts!

It is very possible though that at least one of those valves is starting to fail which I understand has a somewhat different prognosis from heart failure without that element.
How strange. One of my mums friends was talking in this subject ( she doesnt have dementia) in the last month. She is 92 and her warranty is running out. I can’t remember if she had one or two done? She has full understanding of the situation, and unfortunately a host of underlying health conditions!
you have my sincere sympathy.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
So, a bit of an update.

Additional support visits can’t start until Monday. I discovered today that the ‘breakfast visit’ wouldn’t be until 10.30am or later, which is much too late for Mum. So I am engaging the same private provider that we’ve used for Dad over the last few years to come at 7.30am every day and take breakfast upstairs to mum. The 10.30 visit can be to clear the breakfast dishes away and take her more coffee, as well as reminding her that she will need to go downstairs to heat her lunchtime meal. I am using therapeutic untruths about this, because if mum thought she was paying for that early visit she would refuse it. I have agreed with the care manager that they are ‘just helping out the Council team because they are short staffed at the moment’, which is kind of true -they are short staffed which is why they can’t come at the time we need them. So thanks to all of you who have given tips of this technique, it’s helped a lot today!
 

Weasell

Registered User
Oct 21, 2019
551
That sounds wonderful.
Its so nice in there ‘Covid’ days to read that someone has achieved exactly what they need/ want.
Please update and let us know how you get on?
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
That sounds wonderful.
Its so nice in there ‘Covid’ days to read that someone has achieved exactly what they need/ want.
Please update and let us know how you get on?
Yes, I will let you know how it goes. I got mum to make her own coffee at lunchtime today, she took a lot of persuading to haul herself into the kitchen but, once there, she did it fine with no prompting. Of course, managing to do it today is no guarantee she will do it ok when I'm not here, but at least she appears to be capable of doing it on a good day.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
I think mum’s hostess mode is just beginning to slip. Took her breakfast up a short while ago, she was halfway across the landing. Not sure if I was still here or not, couldn’t remember what day it is today, panicking slightly that someone was coming and she needed to have a shower and get dressed before they came.

I reassured her that there is no rush to be up and dressed, her hairdresser isn’t coming until 12 and she had a shower and washed her hair yesterday. She thought about that for a bit and then said oh yes, I did, didn’t I. She’s settled back in bed with her breakfast and coffee now, but I think today could be interesting and not in a good way.

To add to my joy, my dad went downhill a bit yesterday, high temperature back, been swabbed again for COVID plus blood tests for bacterial infection. All of which means I probably won’t be allowed to see him today after all. I will go to the hospital anyway as I can still deliver things for him and collect dirty clothing, but it’s just another worry. Hopefully it will be that he needs a different antibiotic and will then improve again but I’m now unsure about going home tomorrow. Will decide about that later depending on how he is today.
 

Bod

Registered User
Aug 30, 2013
1,306
" and is considered to have capacity to make that choice" Who has made this decision, and when was it made?

A medication review would be a good idea, as would a check for infection.
If you could get her "Capacity" reviewed by a Mental Health professional, then a way forward might be clearer.
Do not try to talk to her regarding Care Homes, she will say NO!
There are various topic's on here as to how to handle that situation when the time comes.

Bod
 

Sarasa

Registered User
Apr 13, 2018
1,698
@CardiffGirlInEssex , I hope your mum improves as the day goes on. Staying with my MiL last month I noticed she was noticeably more confused first thing in the morning or after a nap.
If you were intending to go home that what I would do. If you stay it will be assumed you are her carer and nothing will move forward in getting her the help she needs.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
Are the carers coming today?
I hope it all goes well
xx
Yes, the additional visit at lunch starts today, though the extra breakfast visit starts tomorrow. Thank you for the good luck hope, I have everything crossed!
" and is considered to have capacity to make that choice" Who has made this decision, and when was it made?

A medication review would be a good idea, as would a check for infection.
If you could get her "Capacity" reviewed by a Mental Health professional, then a way forward might be clearer.
Do not try to talk to her regarding Care Homes, she will say NO!
There are various topic's on here as to how to handle that situation when the time comes.

Bod
Thanks for thevsuggestions,@Bod, I don't think there is an infection, this seems to be how she usually is based on what dad tells me. I've been amazed that she managed to keep her hostess mode going for so long, to be honest, I've been waiting for the change to happen.

I am hoping she will cope with the extra visits, there is still scope for an evening visit if she is judged to need it . Care home is very much last resort at the moment and I know from other members here that you have to go through the hoops of up to four visits a day before they will even look at it. If it comes to that I need it to be them making the decision not me although I would then support it.

@Sarasa, yes I will go home tomorrow unless Dad's condition is a cause for concern. If he is worse today that would change things, I don't want the long drive home if it is likely I will get called back the next day.
 

Bod

Registered User
Aug 30, 2013
1,306
@CardiffGirlInEssex
There are certain medications and combinations of medications, that can cause problems.
We had it with the late FiL, his GP(who was retiring) had written prescriptions on demand without really checking.
His new GP reviewed his medication, removed more than half, added one, a few weeks later, all was much better.

Bod.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
186
Well, I’m back home in Essex, plan to go back to Wales on Sunday but will hopefully be a short visit. Mum has everything she needs until then, three care visits plus district nurse every day. Cleaning lady will be in on Thursday, and another family member will call Friday or Saturday. The breakfast time carer (which we are paying for) arrived on time this morning and was lovely with mum. Mum slightly bemused but seems generally accepting of the situation so fingers crossed.