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day mum and evening mum

100hats

New member
Apr 5, 2021
4
0
Every morning and every evening for the last 18 months or so I've rung my mum. She lives alone, independently. She's had two or three years of forgotten words, misplaced keys and repeated sentences etc but over the last year her mental state has deteriorated significantly and every time I ring I wonder which mum I'm going to speak to.
These days, a third of the time I get the lucid, lively switched on mum; able to laugh at jokes, make plans for mowing the lawn or paying the council tax. She asks about us and talks about her day, albeit of limited interaction, mainly with her excellent neighbours. Two thirds of the time though I have a desperate, lonely, frightened, tearful elderly mum who is having vivid hallucinations, doesn't know where she is, asks about why dad is sitting there but not talking to her (he died 12 years ago), and is hearing 'people' having a shower in her bathroom at 3am. She is in pieces, she can't go on like this (her words), and why won't someone help her? I'm obviously worried and upset by these calls and feel I'm not doing enough. She lives 140 miles away; she won't move near us and I can't (sorry - won't ... although that sounds so mean) uproot my family in that way.
The doctor has spoken to her, performed a memory test in which she came out with flying colours - because it was performed by mum #1 at 10am on a sunny morning. She's been checked for UTIs and prescribed anxiety tablets which she refuses to take, having read the leaflet that comes with them in which side effects range from 'nausea to death'. I have almost lined up carers to come in but these have been refused on the basis of 'strange people in the house' and 'I don't need any help getting dressed etc' - which is true. Carers will also come and go and it's having someone there all day to talk to that would help (mum #2's words). We've therefore discussed a home but she doesn't seem quite ready for that step, given how capable and independent she is in many ways. She baulks at the cost of care homes and frankly wants to put it off as long as possible given the cost.
I don't think there's a perfect solution here. In some ways it's like waiting for her to worsen to the point where she will accept a home (I really am sounding heartless, I'm not really, honest!).
I only discovered this forum by chance and have to say, am sort of relieved in a warped way, that my mum and I are not alone in all this. None of my friends or my husband have parents who have been affected by dementia, at least yet, and it can feel rather isolating and stressful. Reading posts I can see there are many others out there who are also picking themselves up after a call or a visit to a loved one who is half the person they used to be.
 

SMacGregor

Registered User
Feb 11, 2021
12
0
Hello - I am totally feeling your pain. My advice would be to push through her rejecting the help - if you can find the right 'carer' then they can start to build a relationship with her and liaise with you. The dementia support lady helped us but without the diagnosis, I am guessing they won't get involved? Do you speak to the lovely neighbours - can they be of help? Go back to the doctor again maybe? Sorry I am not much help but have been in similar situation and wish I had insisted on carers coming in earlier or with the benefit of much hindsight insisted that my mum moved nearer me when she was in a better mental place. Can she come and stay for a week or so? I understand the pressure to go to them is huge but you do have your own life to consider - I will most definitely not put my kids through what my mum has done! Hope someone is more help than me!
 

Rosettastone57

Registered User
Oct 27, 2016
1,489
0
It's unlikely your mum will ever agree to a care home. As far as she is concerned she is just fine. Do you have lasting power of attorney for finances?
 

Weasell

Registered User
Oct 21, 2019
1,282
0
If you only do one thing then get both the powers of attorneys.
If she has good neighbours they will help you with signing the documents.

I have recently introduced ‘Wendy the neighbour that needs some pin money ‘ to mum.
I take care of paying Wendy, mum would dispatch her out the door instantly if she new how much it was costing.
Mum didn’t want carers but was happy for a neighbour to help out.
So Wendy is a neighbour! ( lots of hand waving in the direction of down the road ) Win win!
I am so happy with Wendy it’s like employing Mary poppins!
 

Sarasa

Volunteer Host
Apr 13, 2018
2,814
0
Hi @100hats and welcome to Dementia Talking Point. This is a very friendly place and you'll get lots of support and advice here.
Your mother sounds a lot like mum was a few years ago. Mum too passed the mini-memory test easily, as at the time it wasn't her memory that was the problem but her logic. What I did was send her GP an email with a bullet pointed list of the things that concerned me. Next time I went to the GP with her he asked about the neighbours and he could see from her stories about them coming in and trying to steal her blood pressure tablets that there was something going on. Mum refused to go to the memory clinic and refused my suggestions of someone to help with housework etc so we were at a bit of an impasse. Mum then had a meltdown in the doctor's surgery which led them to send a psychiatrist round to see her. He diagnosed vascular dementia. At the same time mum was going out drinking with random men in the local pub and brought one home on one occasion.
That was when I decided that mum needed twenty-four hour care and moved her to a care home near me. Your mum might thrive in the right home, with carers there to reassure her and lots of activities to keep her occupied. Its a bit tricky at the moment due to covid, but over the next few months things will ease off so it might be worth looking at some homes and putting her name down so you can move her quickly if there is a crisis.
In the meantime Age Uk have a help at home service, which if it's available in your mum's area might provide a bit of companionship, and keep an eye on her. Do you also have Lasting Power of Attorney set up? This will help when your mum starts to have problems managing her financial affairs.
 

Weasell

Registered User
Oct 21, 2019
1,282
0
Sorry didnt finish my post! Not much time tonight!
The compassionate communication link is always useful.


Also it is worth using the search bar at the top of the page using the term ‘fraud’ as your mum could be vulnerable?
 

100hats

New member
Apr 5, 2021
4
0
Sorry didnt finish my post! Not much time tonight!
The compassionate communication link is always useful.

Also it is worth using the search bar at the top of the page using the term ‘fraud’ as your mum could be vulnerable?
Thank you @Weasell , that is a really helpful link. I've noticed I've sometimes slipped into a tone and manner that I use on my 5 year old son who has some behaviour challenges himself. Indeed there are some parallels but as other posts quite rightly remind us, dementia does not mean your friend or relative is retrograded back to being a toddler.
 

100hats

New member
Apr 5, 2021
4
0
Hello - I am totally feeling your pain. My advice would be to push through her rejecting the help - if you can find the right 'carer' then they can start to build a relationship with her and liaise with you. The dementia support lady helped us but without the diagnosis, I am guessing they won't get involved? Do you speak to the lovely neighbours - can they be of help? Go back to the doctor again maybe? Sorry I am not much help but have been in similar situation and wish I had insisted on carers coming in earlier or with the benefit of much hindsight insisted that my mum moved nearer me when she was in a better mental place. Can she come and stay for a week or so? I understand the pressure to go to them is huge but you do have your own life to consider - I will most definitely not put my kids through what my mum has done! Hope someone is more help than me!
Thanks @SMacGregor, your post gives more help than you think. My head keeps saying to press on with a carer - just a bit of companionship in the twilight hours. When she does need a home, whether that's here or there probably doesn't make a difference to her but it would to us.
 

Weasell

Registered User
Oct 21, 2019
1,282
0
Thank you @Weasell , that is a really helpful link. I've noticed I've sometimes slipped into a tone and manner that I use on my 5 year old son who has some behaviour challenges himself. Indeed there are some parallels but as other posts quite rightly remind us, dementia does not mean your friend or relative is retrograded back to being a toddler.
Some other terms it might be useful to search for would be :
Hallucinactions
sundowning and
hostess syndrome
The main thing I learnt from the compassionate communication was telling the person what they needed to know/ could understand rather than the direct truth.
Also nothing was ever their fault !
 

100hats

New member
Apr 5, 2021
4
0
Some other terms it might be useful to search for would be :
Hallucinactions
sundowning and
hostess syndrome
The main thing I learnt from the compassionate communication was telling the person what they needed to know/ could understand rather than the direct truth.
Also nothing was ever their fault !
Yes, it's definitely sundowning that my mum seems to have, at least that's what I've read - the doctor hasn't really diagnosed anything yet as her memory score was so good. Hadn't heard of hostess syndrome and not sure whether I've seen that one, at least not with my mum consciously trying to be better than she is. As for avoiding the direct truth, that's coming quite easily. Sometimes when she's worked up, it's just too much trying to explain what's going on. I just try to find ways to distract her. Might have a career in politics ahead :)
 

NotSuperMan

Registered User
Mar 7, 2021
30
0
Every morning and every evening for the last 18 months or so I've rung my mum. She lives alone, independently. She's had two or three years of forgotten words, misplaced keys and repeated sentences etc but over the last year her mental state has deteriorated significantly and every time I ring I wonder which mum I'm going to speak to.
These days, a third of the time I get the lucid, lively switched on mum; able to laugh at jokes, make plans for mowing the lawn or paying the council tax. She asks about us and talks about her day, albeit of limited interaction, mainly with her excellent neighbours. Two thirds of the time though I have a desperate, lonely, frightened, tearful elderly mum who is having vivid hallucinations, doesn't know where she is, asks about why dad is sitting there but not talking to her (he died 12 years ago), and is hearing 'people' having a shower in her bathroom at 3am. She is in pieces, she can't go on like this (her words), and why won't someone help her? I'm obviously worried and upset by these calls and feel I'm not doing enough. She lives 140 miles away; she won't move near us and I can't (sorry - won't ... although that sounds so mean) uproot my family in that way.
The doctor has spoken to her, performed a memory test in which she came out with flying colours - because it was performed by mum #1 at 10am on a sunny morning. She's been checked for UTIs and prescribed anxiety tablets which she refuses to take, having read the leaflet that comes with them in which side effects range from 'nausea to death'. I have almost lined up carers to come in but these have been refused on the basis of 'strange people in the house' and 'I don't need any help getting dressed etc' - which is true. Carers will also come and go and it's having someone there all day to talk to that would help (mum #2's words). We've therefore discussed a home but she doesn't seem quite ready for that step, given how capable and independent she is in many ways. She baulks at the cost of care homes and frankly wants to put it off as long as possible given the cost.
I don't think there's a perfect solution here. In some ways it's like waiting for her to worsen to the point where she will accept a home (I really am sounding heartless, I'm not really, honest!).
I only discovered this forum by chance and have to say, am sort of relieved in a warped way, that my mum and I are not alone in all this. None of my friends or my husband have parents who have been affected by dementia, at least yet, and it can feel rather isolating and stressful. Reading posts I can see there are many others out there who are also picking themselves up after a call or a visit to a loved one who is half the person they used to be.
Hi 100hats
My FiL 93 sounds similar to your mum
We fetched him to live(stay a while) with us 4months + ago
Weve had a FULL week where he has been totally normal
Then SWITCH!!! he starts getting in a bit of hyper mode
Thinks he has to go to work !!
Talks to his dead relatives
Sees people and dogs/cats oh not to mention the mice running all over
(Freaks me out)
His hyper mode usually last 2 to3 full days /nights And yes then me n hubby are absolutely shattered
We cook all his meals
Only thing he does occasionly is top up his tea with more hot water
I imagine him being assessed on his *normal * day and assessor would say nothing wrong with him
This Dementia stuff blows our minds
This week 1st time happened FiL didnt know who my hubby (his son) was
So sad
Today hes been relatively ok
Keep fingers crossed we ALL sleep well tonight
(((Hugs))) if you (anyone) needs one