A lifelong friend and me

Palerider

Registered User
Aug 9, 2015
1,277
North West
The entire system is fragmented.

Back to dementia, my mum scored 27/30 on initials tests, when she was clearly well in the grip of dementia - I queried at one memory clinic appt and was told that as she had been very high functioning the basic tests just don't really work on that sort of person. I posted a few days ago she was still successfully doing the Telegraph cryptic crossword when no longer capable of cooking, driving etc. I think that dementia is very poorly understood at this point in time, but the timebomb is out there with an ageing population.

I hope you find some music to calm you tonight. I'm sure you know this but you need to work to get the stress ball in your head and body reduced so you can function properly.

Mmm this is the problem I have with mum and her walking to places, she knows where she is going and why, but doesn't think about how far it is and perhaps waiting would be better -but of course that part of her memory (someone will be home later) and cognition no longer work properly. I couldnt argue with her reason for walking to the GP's one day as she didn't feel well and wanted to see the doctor, she said there was no one to take her so she walked there. You can see how this was infact very unwise in the way she did it even though her wanting to see the doctor was probably right. She is amazing at working out her crossstitching, I couldn't do it and I don't have dementia.

This last incident is more concerning as she wasn't as aware of the reason, and by all accounts seemed lost. I need to contact SS and am not sure whether today is a good time as she only just started her antibiotics and besides I don't want to mark my birthday with this, a memory I don't want on my birthday every year. The time has come to rock the boat and seek a review I think and to see if there is anything else that we can do so that she can stay at home, if not then I think a CH isn't so far away unfortunately. This is the second time now I have gone through this and the stress and guilt i feel just thinking about a CH is distressing, but we can't go on like this if it is becoming the norm.
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
Palerider, I appreciate that it would be very difficult for you to respond to a door camera while at work but I am finding the system we have recently installed at mums very useful. Within a few days of using it, I began to get a feel for mums routines and can check up on her without actually looking at my phone. If I get an alert that she has left the house, I listen out for a second alert on the front garden camera after a short period of time which will be her returning then a second alert at the door as she goes back inside.

If she went out and did not return ( not happened so far) then the saved video would show me what she was wearing and in which direction she had walked - which might be helpful if I had to look for her!

But for me the best part has been the ability to speak to her through the cameras. Mum has a problem with cars parking outside her house and keeps going out to peer into the windows or kick the tires or tug at the windscreen wipers to leave a note! If I pick up the alert, I now shout at her, tell her to leave the car alone and go back inside - which she does! It was funny the other day when I had to interact with her and as it was early evening, I suggested that she went inside to have a glass of wine - I was not aware that she was talking to a passing policeman at the time until I heard him laughing!

I know you could not do this easily while at work but it might help you at other times. I check frequently on the front camera to see if the car is there - if not, I can relax and not worry! I can also monitor who is calling at the house and plan to show video clips of the men who have been scamming her of cash to the police.

That drive home from work to help your mum is a feeling I know all too well, I've had to dash round a few times after mums lovely neighbour has called to alert me of a problem, I feel sick all the time and usually end up crying while I drive the 15 miles to mums.
I've had a chat with the carers who have just been, and they were saying its a very difficult problem to crack. I think cameras are a great idea for someone that isn't going to walk off (wander), the problem is even if the camera alerts me to mum walking off how can I stop her given I don't check my phone every five mins, its not possible and I work 50 miles away. I do have a tracker on her keyring but that is only useful for finding where she may have wandered to. Its the bit inbetween that poses the problem, the walking off and being able to catch her at that moment.

I have decided to have a garden gate put on the side of the house with a fathomable catch on it and do the same to the back garden gate. This means she has to fathom how to undo the catch in order to leave the property. Its a trial to see how things go and may be enough to help her stay at home for a while longer.

If it doesn't work, atleast I will have exhausted all the options I can think of. I know what you mean about that drive when you get a call -its a horrible feeling
 

jugglingmum

Registered User
Jan 5, 2014
5,504
Chester
Happy Birthday, I hope you manage to have a nice day - maybe another roast?

I have done 'difficult' things on my birthday (arranging son's funeral was the worst) and it only shapes your memory of your birthday if you let it.

I couldnt argue with her reason for walking to the GP's one day as she didn't feel well and wanted to see the doctor, she said there was no one to take her so she walked there.
Yes - good old dementia logic. I remember similar conversations with mum, so infuriating and she came up with a logical (but wrong) reason why she'd do or done what she did.

My mum's dementia, with hindsight, was clearly in evidence years before. She said her phone didn't work, which might be true due to the old phones and her hoarding, but in reality I think she'd stopped being able to use the phone as well. One day she drove herself to the Drs and asked for an appointment, the receptionist said she couldn't have one, so she said she'd sit and wait to the end of the surgery, so at some stage a GP came out to waiting room looked at her leg and called an ambulance - and she was in hospital for 5 days. She refused to have any next of kin notified 'we were all too busy with our children and she didn't want us disturbed', although she let them notify the vicar. She lived in a hospital gown as she wouldn't let anyone in her house (it was such a state she was aware she wouldn't be allowed back in - I didn't know this). This is recounted by mum at the time, so I am relying on her memory for it to be correct but I don't have major reason to doubt it. I do think there was some SS involvement as when everything went pop there was a SS file on her, but they couldn't tell me anything.

Whether it is because my mum was high functioning or it was more frontal lobe damage so her memory remained intact for a long time, I do take issue with the definition of capacity in relation to dementia. Just because someone can put forward a logical argument like your mum did, in my mum's case it doesn't to me mean she has capacity but bad judgement, it means that she no longer has the ability to make judgements, but somewhere there are brain paths that can create a plausible sounding reason. We wouldn't let a small child make those judgements so why as a civilised society do we consider it acceptable to let a vulnerable older person make those judgements.

When mum had her crisis, I made decisions for her, I tried to involve her as best I could, although for weeks she did keep repeating she couldn't understand why she couldn't go home, where she thought she was happy ( I don't think she was). I think if a social worker who wanted to advocate mum's rights had got involved at an early stage things could have turned out different to the detriment of my mum. In her sheltered extra care flat she still had her independence but was safe - and safety has to come before wants. By the time a social worker saw her she had accepted that she was moving into the flat. Once settled she would go on and on about how fantastic a choice I had made for her and how much she liked it.

Not all of this relates to your mum, but is just my general thoughts on interpretation of things, which I think you will understand where I come from.
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
Happy Birthday, I hope you manage to have a nice day - maybe another roast?

I have done 'difficult' things on my birthday (arranging son's funeral was the worst) and it only shapes your memory of your birthday if you let it.



Yes - good old dementia logic. I remember similar conversations with mum, so infuriating and she came up with a logical (but wrong) reason why she'd do or done what she did.

My mum's dementia, with hindsight, was clearly in evidence years before. She said her phone didn't work, which might be true due to the old phones and her hoarding, but in reality I think she'd stopped being able to use the phone as well. One day she drove herself to the Drs and asked for an appointment, the receptionist said she couldn't have one, so she said she'd sit and wait to the end of the surgery, so at some stage a GP came out to waiting room looked at her leg and called an ambulance - and she was in hospital for 5 days. She refused to have any next of kin notified 'we were all too busy with our children and she didn't want us disturbed', although she let them notify the vicar. She lived in a hospital gown as she wouldn't let anyone in her house (it was such a state she was aware she wouldn't be allowed back in - I didn't know this). This is recounted by mum at the time, so I am relying on her memory for it to be correct but I don't have major reason to doubt it. I do think there was some SS involvement as when everything went pop there was a SS file on her, but they couldn't tell me anything.

Whether it is because my mum was high functioning or it was more frontal lobe damage so her memory remained intact for a long time, I do take issue with the definition of capacity in relation to dementia. Just because someone can put forward a logical argument like your mum did, in my mum's case it doesn't to me mean she has capacity but bad judgement, it means that she no longer has the ability to make judgements, but somewhere there are brain paths that can create a plausible sounding reason. We wouldn't let a small child make those judgements so why as a civilised society do we consider it acceptable to let a vulnerable older person make those judgements.

When mum had her crisis, I made decisions for her, I tried to involve her as best I could, although for weeks she did keep repeating she couldn't understand why she couldn't go home, where she thought she was happy ( I don't think she was). I think if a social worker who wanted to advocate mum's rights had got involved at an early stage things could have turned out different to the detriment of my mum. In her sheltered extra care flat she still had her independence but was safe - and safety has to come before wants. By the time a social worker saw her she had accepted that she was moving into the flat. Once settled she would go on and on about how fantastic a choice I had made for her and how much she liked it.

Not all of this relates to your mum, but is just my general thoughts on interpretation of things, which I think you will understand where I come from.

I relate to most of what you have said @jugglingmum. I think your take on judgements is fairly accurate. Each person is different though, mum was able to make relatively good judgement calls until about 6 months ago and then I started to notice the arguments she put forward for doing things lacked substance, parts of the reasoning were missing. We have reached a point where I don't think I can say she can make a judgement call even if it is a bad one now.

Mum has always been a team player and very sociable in groups when with her peers, so I have to resolve my own value judgements now and think that possibly she may settle in a CH if things come to that. Its been a hard journey, as I was ready to make the decision a few months ago and with some intrepidation I was stopped in my tracks, now I think there will be agreement if we can't resolve the current problem. If in the next few weeks things can't be made safer at home, then I will have to force the matter. I have supported her as much as I can and sometimes beyond, but the line in the sand is almost met, and my own anxiety is sky high with constant worry when she is alone.
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
I was going to go out for a Sunday dinner but mum wanted to come home, she is sat quite happily peeling sprouts talking about grandad and his roasts and her cat she used to have as a child smacking its lips at the smell of roasting meat
 

Tea and. toast

Registered User
May 8, 2019
54
Happy Birthday Palerider. I hope you have had a good day and had a tipple or two to celebrate. It is my birthday in a few days time so I will sponsor myself for the Super memory walk that I did last week. Friends, colleagues and members of the community were kind enough to sponsor me, so I really can't ask them to make a donation for my birthday. I raised more than my target so really pleased. Sometimes it is hard to get sponsors so that is great some of your friends have made donations.

With regards to an older post I am glad that you have your wonderful memories and ceramics of your time at the art class with your mum. That is something to treasure. I had the opportunity to make a ceramic bowl at work a couple of weeks ago ( though missed a bit of the session). So will wait with baited breath to see how it turns out.

Re your mum wandering- Dad has wandered a few times over the past few weeks though not far, so debating what to do. A couple of the neighbours have been kind and took Dad back to the house. I don't work far from home but it is still a worry. I am going to meet a friend on Friday for a day out, so my brother is kindly going to stay with Dad until I get home (could be my birthday present) I was invited to my friends for the weekend but couldn't get cover. Looking at respbite is another whole issue. Carers come in in the morning and at lunchtime 6 days per week but I couldn't leave Dad all day until the evening now.
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
couldn't for the life of me remember the name of mums cat, so I just asked her...clear as a bell she said Tinker, and yes I remember now, mum had told me before all of this dementia. Then I remembered she actually had three cats and a dog called Kurt.
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
Well I am so lucky on the 13th, I have won £5 on thunderball and got a £5 off voucher for bodyshop....10 quid up....thats it -oh and one birthday card
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
My email to mums senior social worker:

Hi XXX

I just wanted to update you about mum she had walked some five miles on Friday, 11th October and was brought home by a stranger. XXXXX (XXXXXX) somehow was able to assist. I believe XXXXX called the duty SW to which there was no assistance given.

I was at work at the time and had to leave my shift early by three hours, which I don’t mind as its my mum. I am however concerned at the lack of response from social services, given that I would not have been able to be with mum for some time after being notified.

Whilst I am in agreement that we should try all efforts to keep mum at home, this is not at the cost of safety. I am a little annoyed to find that a person with dementia is worth so little to the state care system.

For your records I have raised my concerns with the local MP on the scandal of social care (House of Lords report), who has in turn lobbied the Minister for Social Care, to be clear I understand the difficulties social services face, however, my expectation of any department that owes a ‘duty of care’ is indeed that it follows that through regardless of the endless rhetoric about resources.

I will not formally complain because I think that your department is already met with considerable challenges, which you are asked to unfairly meet.

However, I am faced with the increasing challenge of keeping mum at home safely, and I think a review would be helpful given the current change in mum’s own behaviours and also supportive of me as a lone carer.


Regards


XXX XXXXX​
 

Starbright

Registered User
Apr 8, 2018
465
A late happy Birthday @Palerider ..I hope you’ve had a good day....I do read all of your posts and feel whatever decision you make for you mum ((with regard to a care home)) will be the right decision for you both.
(((((( Hugs)))) A x
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
I just want to say thanks to everyone, whatever you do tonight, however you are. This journey is no easy one, and we all have our challenges be they in different ways. @jugglingmum said she hoped that I found some music, so here as piece of music that I seldom share, but is piece I keep close to me. Its Laudate Dominum from the Mozart Vespers, and this recording is probably one of the best you will find, unusually an Inspector Morse soundtrack. I know it isn't to everyones taste, but if you can when the house is empty, turn up the volume, sit back and close your eyes


 

Tea and. toast

Registered User
May 8, 2019
54
A lovely piece of music thanks for sharing
It brought back memories of my old choir
I hope you have a good week Palerider
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
I've been awake since about 3:30 this morning with mum pottering about the house and have decided that I can't go to work until I have contacted the SS and mum's GP to get a review. This is a huge change in her and I don't think its a UTI as she has made no improvement on the antibiotics. I can't leave her in case she wanders again and there is no one else.
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
Just spoke with the duty SW, nothing she can do unless its an emergency as in there is only her, I will have to wait until 08:30