Alone with Mum

Lizbuff

Registered User
Apr 9, 2019
12
Hello! This is my first post. Mum was diagnosed about three years ago & is on Donepezil. I'm an only child & live just with mum. She has two sisters (with assorted children & grandchildren) but they both live on the coast & seem almost completely disinterested. I'm managing - much of the time she isn't too bad, although Christmas was a bit lonely. Just recently, as I believe is quite common, in the evenings (her sundowning is quite apparent) she is sure that I live alone in our flat, while she lives 'up the road'. She often says she should go home, despite having lived here for 20 years! I can lock the front door at night & have the key by my bed, so she's safe, but I worry about leaving her in the flat alone in case she decides to leave to go 'home'. I'm not working - resigned in May to look after her - but do like to go out with friends maybe once every couple of weeks for a few hours. I suspect it's incredibly dangerous & morally off to lock her in, but wondered how other people manage. A phone with a tracker seems useless as I know she wouldn't carry it...any advice would be much appreciated. I almost wish I could have her microchipped!
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,667
Merseyside
Welcome to DTP @Lizbuff
Could you get carers in to sit with your mum while you go out?
Could mum go to a day centre so you have a day to yourself each week?
 

Lizbuff

Registered User
Apr 9, 2019
12
Welcome to DTP @Lizbuff
Could you get carers in to sit with your mum while you go out?
Could mum go to a day centre so you have a day to yourself each week?
Thank you Cat27 - she definitely wouldn't entertain carers "Nothing wrong with me!" (I've just taken her to bed where she said "is this my room?" so... you know!). I might look into day centres though - there's a Memory Cafe fairly near so I'll suggest that. You never know, she might be up for it....!
 

Claireo

Registered User
Sep 24, 2019
11
I have a brother, but he's abroad, so it's just me. I'm not at the worrying about wandering stage, but there's loads of technology you can get to monitor the door etc. Have a look at tile...they work with Alexa to help you find phones/keys/purses. The smallest one is a sticker.

I joined my carers group (now I'm not working) and they are invaluable for tips.

I didnt think I'd get my mum to the dementia home for memory cafe, but I booked her in for a massage and the lady there sold it to her. They often do hairdressing and they're often cheaper. My mum often doesn't think she has the d word.
 

Lizbuff

Registered User
Apr 9, 2019
12
I have a brother, but he's abroad, so it's just me. I'm not at the worrying about wandering stage, but there's loads of technology you can get to monitor the door etc. Have a look at tile...they work with Alexa to help you find phones/keys/purses. The smallest one is a sticker.

I joined my carers group (now I'm not working) and they are invaluable for tips.

I didnt think I'd get my mum to the dementia home for memory cafe, but I booked her in for a massage and the lady there sold it to her. They often do hairdressing and they're often cheaper. My mum often doesn't think she has the d word.[/QUOT

Hi Claireo
Thank you so much for your reply. I hadn't heard about Tile but will look into it as well as a carers group.
Like your mum, mine doesn't really believe she has dementia - she will admit to having it 'a little bit' sometimes!
I don't really think she'd actually leave the flat, but as I mentioned she does sometimes need convincing that she's at home! I'm still learning what to ignore & play along with & what to argue through. Difficult - I hate to admit it but I do find it frustrating at times when she's counted the money in her purse for the umpteenth time or asks if I like living alone! I think I'm still finding it tough to see someone so intelligent & funny & capable now so unsure & vulnerable. Oh well, a day at a time.
I'm really glad your mum now enjoys the cafe - sounds great & definitely something I'll explore in the new year.
All the best to you both :)
 

marionq

Registered User
Apr 24, 2013
6,014
Scotland
Thank you Cat27 - she definitely wouldn't entertain carers "Nothing wrong with me!" (I've just taken her to bed where she said "is this my room?" so... you know!). I might look into day centres though - there's a Memory Cafe fairly near so I'll suggest that. You never know, she might be up for it....!
I wouldn’t “suggest” it. Just do it. Take her out for a coffee and turn up at the memory cafe or the day centre. If it doesn’t work out leave it for a month and try again. You need to set in place early the things which will be essential for your wellbeing as well as hers. A good day centre especially if she gets picked up and taken there by minibus would allow you both to get a break.
 

Lizbuff

Registered User
Apr 9, 2019
12
I wouldn’t “suggest” it. Just do it. Take her out for a coffee and turn up at the memory cafe or the day centre. If it doesn’t work out leave it for a month and try again. You need to set in place early the things which will be essential for your wellbeing as well as hers. A good day centre especially if she gets picked up and taken there by minibus we ould allow you both to get a break.
Thanks MarionQ - I will definitely do so. Happy New Year in the meanwhile :)
 

Pete1

Registered User
Jul 16, 2019
500
Hi @Lizbuff, it is a real challenge to deal with. There are no easy answers really, the only thing I can suggest is to get carers (or pay someone you or Mum knows) to sit with Mum when you are out. The problem is that no amount of coaxing will make her believe that the flat is her home - in the end the carers I had for Mum couldn't deal with it so I was forever round trying to ease the situation (not always successfully). I expect the 'home' she is thinking of is a childhood home. Unfortunately it tends to become more prominent and regular, it's so difficult to deal with as logic doesn't work. I wish you all the best.
 

Lizbuff

Registered User
Apr 9, 2019
12
Hi @Lizbuff, it is a real challenge to deal with. There are no easy answers really, the only thing I can suggest is to get carers (or pay someone you or Mum knows) to sit with Mum when you are out. The problem is that no amount of coaxing will make her believe that the flat is her home - in the end the carers I had for Mum couldn't deal with it so I was forever round trying to ease the situation (not always successfully). I expect the 'home' she is thinking of is a childhood home. Unfortunately it tends to become more prominent and regular, it's so difficult to deal with as logic doesn't work. I wish you all the best.
Hi Pete1
Thank you for your very kind words. I'm still learning that logic doesn't work - getting there slowly! I'm certainly going to look into finding someone local who would come in and 'keep her company' if I'm out. I'm grateful that the better days still far outweigh the not so good ones. All the best to you for 2020
 

Claireo

Registered User
Sep 24, 2019
11
Hi,
Happy new year... we're trying to buy a house, but when we move, am thinking about getting someone into clean and make my mum lunch for an hour or so a day, hopefully I can then go back to work. Would saying you can't cope with ironing/cleaning/gardening help? And If that person can iron/clean/garden...and you don't like doing that...bonus!

There are befriending services out there, but I can't figure out how to get them involved.

All the best
Claire x
 
Last edited by a moderator:

Tammer

Registered User
Dec 15, 2019
11
Hi Lizbuff,
From reading the posts above, I can sympathise that you are in a tough situation.

Can I ask what part the state is playing in the care of your mum? I didn't see any mention of it above. I would recommend that you get your mum to her GP, with you, as soon as possible, and explain the situation so that they can assign a social worker, health visitor etc and schedule appointments with Neurology, memory clinic etc.

You are not alone in this.
 

Lizbuff

Registered User
Apr 9, 2019
12
Hi,
Happy new year... we're trying to buy a house, but when we move, am thinking about getting someone into clean and make my mum lunch for an hour or so a day, hopefully I can then go back to work. Would saying you can't cope with ironing/cleaning/gardening help? And If that person can iron/clean/garden...and you don't like doing that...bonus!

There are befriending services out there, but I can't figure out how to get them involved.

All the best
Claire x
Hi Claire
All the best with buying the house - fingers crossed! We're in a flat, so gardening is no problem . It would be nice to go back to work, at least part time, so I might think about carers to pop in during the day. Having said that, it's also nice to be able to spend this time with mum while we can both benefit from it. I guess, as we all know, it's a day at a time. Really hope you can get your mum the support and get back to work x
 

Lizbuff

Registered User
Apr 9, 2019
12
Hi Lizbuff,
From reading the posts above, I can sympathise that you are in a tough situation.

Can I ask what part the state is playing in the care of your mum? I didn't see any mention of it above. I would recommend that you get your mum to her GP, with you, as soon as possible, and explain the situation so that they can assign a social worker, health visitor etc and schedule appointments with Neurology, memory clinic etc.

You are not alone in this.
Hi Tammer, thank you so much for your very kind words. Just posting hThe state haven't got involved as yet - attendance allowance has been approved & I'm waiting to hear about carers allowance alongside it. Where we are, after diagnosis by the memory clinic & the prescription of medication, the PWD is discharged ( I was astonished!!). I know I can ask for help from the GP if necessary & the Alzheimer's Society rep locally is great.
 

Lizbuff

Registered User
Apr 9, 2019
12
Hi Tammer, thank you so much for your very kind words. Just posting here makes a big difference.
The state haven't got involved as yet - attendance allowance has been approved & I'm waiting to hear about carers allowance alongside it. Where we are, after diagnosis by the memory clinic & the prescription of medication, the PWD is actually discharged (I was astonished!! If this were any other condition, or one predominately affecting children, I'm sure there would be on-going monitoring, shedloads of support thrown at you and so on. Can't understand what it is that makes this - perhaps the cruelest of 'diseases' - different, but that's another rant!! ☺).
Having said that, I do know I can always ask for help from the GP if necessary & the Alzheimer's Society rep locally is great (& that's for both mum & me).
Touch wood, we're actually doing ok so far, but it's lovely to know there are people out there to have a bit of an online wobble with!
I've got plans for the memory cafe, probably next week, so that will be my first step out of what may have been a bit of denial on my part☺
In the meanwhile, thanks again & all the best to you
 

Lizbuff

Registered User
Apr 9, 2019
12
Just wondering whether anyone else has heard of VieLight? IApparently there are clinical studies that seem to indicate it may improve cognitive function and memory. Of course this won't be available yet but machines can be purchased (I know - they're costly too!) with an apparent 80% refund if it isn't helpful after 6 months.
I know it's probably highly naive of me but I'm wondering whether to give it a go (keeping up the Donepezil too of course).
Just thought I'd see if anyone else had tried...?
 

One Moment At A Time

Registered User
Jan 4, 2019
35
Puerto Rico
Hello! This is my first post. Mum was diagnosed about three years ago & is on Donepezil. I'm an only child & live just with mum. She has two sisters (with assorted children & grandchildren) but they both live on the coast & seem almost completely disinterested. I'm managing - much of the time she isn't too bad, although Christmas was a bit lonely. Just recently, as I believe is quite common, in the evenings (her sundowning is quite apparent) she is sure that I live alone in our flat, while she lives 'up the road'. She often says she should go home, despite having lived here for 20 years! I can lock the front door at night & have the key by my bed, so she's safe, but I worry about leaving her in the flat alone in case she decides to leave to go 'home'. I'm not working - resigned in May to look after her - but do like to go out with friends maybe once every couple of weeks for a few hours. I suspect it's incredibly dangerous & morally off to lock her in, but wondered how other people manage. A phone with a tracker seems useless as I know she wouldn't carry it...any advice would be much appreciated. I almost wish I could have her microchipped!
Warm respectful greetings from Puerto Rico, your not alone --> because the Higher Power of your understanding is with you & your dear mom 24/7.

I'm 59 & been Dx with early stages of AD & been prescribed Namenda XR 28 MG, Aricept 5 MG among ...,

My advise to you reach out in the government agency where you live, I know it easy easy but one must be pro -active, year indeed you need "an excape volve" / "change the channel" --> got out to a mall, ice cream polar, the movies, care givers much change the mannanie.

Maybe in the area where you live there are AD surport groups, I myself attend to one the 3rd Saturday of each month, I find the fellowship meeting a great blessing.

From Puerto Rico wishing you & your loved ones innercalmness & peace,
 

Lizbuff

Registered User
Apr 9, 2019
12
Thank you very much for your lovely words - One Moment at a Time sums things up perfectly.

We've just had a nightmare couple of days - at a routine pacemaker check after almost a year, it was discovered that one of the leads had migrated through the heart muscle. We had to go through A&E & sat there from about 11am until 8pm while a bed was found on a ward. We were finally moved but, just as we'd settled, the ambulance transfer to a second hospital arrived. You can imagine mum's confusion.
We arrived at the second hospital at about 9pm & after a bit of a tussle they allowed me to stay (albeit on a chair, which killed my back! ) with her as she was in a side room.
Next day, after various tests, they took her off for the surgery to fix the leads. It was supposed to take an hour. After 2 hours with no news I began to get concerned. The nurse had heard nothing.
She finally came to let me know that mum was ok but they were bringing her back to high dependency - she didn't know why. Of course I began to imagine all sorts. I was alone (no partner or siblings or other family members - I don't have them), in a room with nothing from 3.15 until about 7not knowing anything. I cannot describe my relief when she was located on CCU just in need of extra monitoring.
Due to her behaviour they were very understanding & keen for me to stay, so I had another night in a chair. Mum was a complete nightmare trying to climb out of bed, pulling out her cannula etc (not her fault obviously but arrrgh!).
After more tests the next day she was allowed home.
Very relieved (apart from her removing her dressing of course!). However she is not supposed to lift her left arm much to allow the wiring to heal. She doesn't seem to get this at all as it doesn't hurt & she can't see the wiring so doesn't see the problem & is sometimes lifting her arm too high (smoothing her hair a favourite!). I'm 'having a go' if I say anything.
If anyone has any tips as to how to get her to keep her blooming arm still I would be so grateful. Simply cannot stand the thought of it going wrong - again!! GAAAH!!
 

One Moment At A Time

Registered User
Jan 4, 2019
35
Puerto Rico
Hola / Hi! Lizbuff & thanks so much for your reply, I understand "your language" it isn't easy in fact is very "draining", there is a saying in spanish "lo que no me mata, gracias al Poder Superior de mi entedimiento me hace mas ... Fuerte" / what doesn't kills me thanks to a Higher Power of my understanding makes me more ... Stronger, baby steps / look straight in the face at lives daily issues with lots ... of faith 'today & now", reach out by phone to the Dept. of Social Services where you live, see if the government entity could send you an individual that could replace you for ..., you as a caregiver must have an "excap valve", go out to the mall have an ice cream, nice hot cup of café, tea, or chocolate, go to the movies, ..., ** if you're not well "body & mind" you can't take care of self or others, reach out by phone to AD surport groups where you live, for some time I been attending AD meetings in Bayamon, Puerto Rico & truly these folks have been a great blessing in my life, wishing you & your loved ones the best, be safe, always buckle up when driving & may the Higher Power of your understanding, protect you & give you every moment of your life His calmness / peace, have a blessed day,
 

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