Living with my mum who has dementia

[April100]

Good evening, I am at the moment the only carer for my mother who has Lewy Bodies dementia. I moved her to live with me 6 years ago when we noticed she was not coping after the death of my father. She was diagnosed within the first 6 months and has steadily worsened over the 6 years. I decided to get rid of the private part time care when the covid-19 broke out, to be totally sure we were safe. I am finding it very difficult as my mother is crying on and off all day and night, or being rude and shouting to get out. Most nights if we get more than 3 hours sleep it's a miracle. I would be grateful for any ideas to try to calm her down. Obviously all the usual, tactics, like distraction, music, ice cream are not working any more.
Hoping for some golden nuggets, many thanks Daisy.

Hi Daisy
I hope someone will be able to give you the benefit of their experience.

I can only speak from my own experience. The times when I get to the 'end of my tether' - when my mother is turning out every cupboard , every drawer, going to the loo every two minutes etc - I just have to take myself away from the situation as nothing I say, no reassurance, has any effect. Certain doors in the house are locked so that she cannot get into danger. I usually go upstairs for a cry, or out into the garden. Eventually she calms down - and I also find more patience from somewhere. I tidy up and my mother doesn't even remember it happened.

It is different with you having to deal with crying & shouting etc. I hope that you will take care of yourself, I know how sleep deprivation messes with your head. Do you have a professional to talk to? GP? Social worker? Admiral Nurse? Would you consider having a carer in again so you could have a break? If you are only getting 3 hours sleep....

 

[Daisymayormaynot]

Welcome to Dementia Talking Point @Daisymayormaynot

Have you tried settling your mum with a bedtime routine as you would a child? A quiet time and a bedtime drink has been successful for some people in settling their person with dementia overnight. My apologies if you’ve already tried this.

Lack of sleep is a common problem for many carers and hopefully others will come along with more ideas for you to try.

Unfortunately my mum won't get into any bed any more, as she "see's " boys, men,children and babies in the bed and there's no room for her. She dozes in her chair for odd hours. She has no routine and will not go along with any you try to implement.
Today has been very trying, she would not let me help her wash again, so this is ten days now without washing, we managed to get some clean clothes on around 4pm when she had a good three minutes but I am concerned about her skin rashes, as she wouldn't let me help and scratches her skin raw and of course if I even mention to be careful, she sees it as shouting and kicking her again and goes into a whirl of crazy, anxious questioning always ending in a couple of hours of crying.
I am in a living hell.

 

[Daisymayormaynot]

Hi Daisy
I hope someone will be able to give you the benefit of their experience.

I can only speak from my own experience. The times when I get to the 'end of my tether' - when my mother is turning out every cupboard , every drawer, going to the loo every two minutes etc - I just have to take myself away from the situation as nothing I say, no reassurance, has any effect. Certain doors in the house are locked so that she cannot get into danger. I usually go upstairs for a cry, or out into the garden. Eventually she calms down - and I also find more patience from somewhere. I tidy up and my mother doesn't even remember it happened.

It is different with you having to deal with crying & shouting etc. I hope that you will take care of yourself, I know how sleep deprivation messes with your head. Do you have a professional to talk to? GP? Social worker? Admiral Nurse? Would you consider having a carer in again so you could have a break? If you are only getting 3 hours sleep....

Thank you so much for your kind words, I can't leave her sightline any more, if I leave the room after about ten seconds she is crying that I've left her, her leg is broken, her face is cut off etc...... anything for attention, even the bathroom is not my sanctuary any more, this happens every time, even making a cup of tea !
If I go into another room she bangs on the door and shouts/crys until I come out, then continues for hours telling me how useless and wicked I am.
Unfortunately, she actually has a good memory with things she's interested in, as Lewy bodies is a particularly difficult dementia and she can nearly fool people into thinking I am the problem. So moving her things would cause havoc !!
I tried to talk to GP, social services etc, but as we have private care they are not helpful and have told me it's one or the other.
Thank you again, I hope you have a calm night.

 

[Just me]

Oh @Daisymayormaynot I really feel for you.
My mum is now very dependant on me and I get little time to do anything or have time on my own.
She doesn’t remember so will come into the loo when I’m there, constantly interrupt if I’m busy cooking etc and needs to know where I am, all since lockdown.
Although I’m finding it difficult and often feel like screaming I think you have it far harder.
I hope you have a calm night too and can get some rest.

 

[Daisymayormaynot]

Thank you, it is such a sad, emotional time in all our lives looking after someone with this illness.
I expect like me, you also feel totally isolated and have no choices, lockdown has of course made the anxieties much worse, infact if this helps or even gives anyone hope I will be thrilled.
Last year my mum was in hospital with double pnumonia and during that month, went downhill mentally at a rate of knots. I ended up having to spend as much time as possible next to her as she couldn't even feed herself or walk and although the nurses are amazing, they are not able to care for someone with my mothers problems. Luckily she got better and they let her home, but she was a different person to the one four weeks before. I had to half carry her to the bathroom, many times not quite making it in time. When she sat in her chair her head hung onto her chest and she wouldn't wear her false teeth, even spending most of the day with her eyes closed, saying she couldn't open them.
Slowly things returned to our normal, and I fixed her head by making a headrest out of the leg of a pair of thick tights and stuffed it with the inner of a pillow !!
It took about three weeks to get her looking and feeling back to herself.
So I am hoping that as soon as this is over and we get back to treats like the hair salon and meals out she will be a bit happier and at peace with her turmoils.
I hope this for all our poor loved ones who can't understand why their world has changed.
All we can do is our best and evey single question and answer on this forum comes from our love.
Sleepwell Daisy.

 

[Just me]

Yep feel isolated and nowhere to turn. Earlier today I spent over an hour on the phone (with interruptions) with someone from the local Carers but there’s little they can do at the moment. I think this virus is making lots of people feel pretty helpless.

You did well getting your mum back to your normal in three weeks. Mum’s had three ops since being diagnosed and each time she is a little worse and never gets back to where she was.

I wasn’t sure how much Day Care and little trips out to the hairdressers meant to her but she changed so much only a couple of weeks into lockdown. I can’t wait to get back to some sort of normal but I’m not sure mum will be up to Day Care anymore, I’m thinking of a sitting service and it seems the time has come for full time professional care.

Hope you have a restful night.

 

[Daisymayormaynot]

Dear Just Me, so sorry to see you feel like this, it really is testing !!
Hoping this may make you smile, I'll tell you what happened today.
After a good morning, went a bit nasty around lunch time, we carried on, a bit of Lady Gaga and Andrea on utube for an hour seemed to quieten things down, we even had drumming ( I bought real drumsticks, she's pretty good on a pillow ) and singing, so good so far.
It's now day 12 after the last shower, as the lounge has to be a constant Bahamian 26 degrees it is getting very hot and stinky !
So I asked nicely, oh dear, Ma was not amused.
Next try was a new clean outfit, oh yes, about time she had been waiting all day and I had better get a move on........
As we were changing I noticed the tell tale sign of red raw skin that needs acting upon, ( is this a common problem ?)
You may well know that trying to sponge wash an old lady who's sole intent is to stop you is a real game, I try to be as quick as possible, but unfortunately I have to go back in to cream the areas !!!! anyway today she was particularly mad and screamed full throttle into my left ear, if it wasn't so crazy I would be crying.
Ma has never liked showering but since lockdown it's become a game that she won't let me help her.
I am now being called everything under the sun and after asking nicely would she like a proper cappuccino, to try to change the feel, she's come out with a classic, " Well, may you drown !!! "
As I said, I hope this makes you smile, it did me.
Quiet nights for us all please !!!

 

[LizzyC]

Hi Just Me
I am glad you posted.
When I read of other people feeling the same emotions or going through equally tough experiences I don't feel so alone. As a lone carer, Lockdown has been a tough experience and taught me how much just going out to shop or chat to people helps counteract the repetition and the surreal conversation I deal with 24/7.

Hi April and Just me
I know just how you both feel as another lockdown lone carer. I knew my Mum had problems prior to this, but whether lockdown has made things worse, or me being with her so much has enabled me to see it, I don’t know. Finding this site has been a revelation. I haven’t dared use the term dementia even to myself, but after an awful day today and reading so many other people’s experiences, I’m convinced that that is what Mum and I are dealing with. Though she thinks she fine.
Thank you all for your helpful incites and suggestions.

 

[Just me]

Dear Just Me, so sorry to see you feel like this, it really is testing !!
Hoping this may make you smile, I'll tell you what happened today.
After a good morning, went a bit nasty around lunch time, we carried on, a bit of Lady Gaga and Andrea on utube for an hour seemed to quieten things down, we even had drumming ( I bought real drumsticks, she's pretty good on a pillow ) and singing, so good so far.
It's now day 12 after the last shower, as the lounge has to be a constant Bahamian 26 degrees it is getting very hot and stinky !
So I asked nicely, oh dear, Ma was not amused.
Next try was a new clean outfit, oh yes, about time she had been waiting all day and I had better get a move on........
As we were changing I noticed the tell tale sign of red raw skin that needs acting upon, ( is this a common problem ?)
You may well know that trying to sponge wash an old lady who's sole intent is to stop you is a real game, I try to be as quick as possible, but unfortunately I have to go back in to cream the areas !!!! anyway today she was particularly mad and screamed full throttle into my left ear, if it wasn't so crazy I would be crying.
Ma has never liked showering but since lockdown it's become a game that she won't let me help her.
I am now being called everything under the sun and after asking nicely would she like a proper cappuccino, to try to change the feel, she's come out with a classic, " Well, may you drown !!! "
As I said, I hope this makes you smile, it did me.
Quiet nights for us all please !!!

Yes it did make me smile.

I know what you mean about the heat, I nearly pass out if I spend too long in the same room or go into a comatose state. I love the idea of pillow drumming but not the ‘hum’

I had a chuckle the other night, about 3am mum got up and was waving her waterbottle around spraying everything. Got her to bed then heard her up again an hour or so later. As I opened my bedroom door she started scrubbing me with a wet sponge from the bathroom then started on the walls and banister. I was exhausted and grumpy but somehow found it funny. Perhaps she was fed up seeing all the dust around...

Oh for an undisturbed night ?

 

[Just me]

[Hi there @LizzyC.
Sorry to hear about your mum. I remembered the early days when I knew something was wrong but mum denied it and wouldn't go the GP.
There can be all sorts that can cause similar problems and behaviour so perhaps try not to worry until your mum has an official diagnosis.

 

[Daisymayormaynot]

What a busy girl she is !
It sounds a bit like Ma, up and about every hour or so, but instead of being useful and doing housework, Ma likes to see how many toilet rolls she can squeeze into the loo. The local drain clearer man last time, after coming out to clear our drains at £160 a go for the third time in as many months, felt sorry for me and said next time we won't charge if you can wait till the end of the day ! How sweet.
Sweet dreams.

 

[Just me]

So that’s what’s happening to the loo rolls ?

 

[Daisymayormaynot]

Dear Lizzy C,
This lockdown has made so many problems for so many people.
I have looked after my Mum for the last 6 years and like you was horrified at the thought of Dementia.
First of all, yes don't jump to any conclusions until you have a definite diagnosis and actually when I was told that Ma had Lewy Bodies Dementia it was ok, really ok.
If I could go back 6 years I would say to myself stop worrying, it's just another side to her personality, a bit like a new friend or a new strange hair colour that shocks you every time you walk past a mirror at first, but within a few days it's as if it's never been any different.
You will learn to live with and love the new her and new you, because you will change too, infact I wouldn't want it any other way because I have learnt some incredible things about my Ma that I would never have found out.
There are sad, lonely, heartbreaking moments but please don't forget the magic that is shared when you live in their shoes.
Keep us informed and ask as many questions as you need to,
Sleepwell.

 

[LizzyC]

Dear Lizzy C,
This lockdown has made so many problems for so many people.
I have looked after my Mum for the last 6 years and like you was horrified at the thought of Dementia.
First of all, yes don't jump to any conclusions until you have a definite diagnosis and actually when I was told that Ma had Lewy Bodies Dementia it was ok, really ok.
If I could go back 6 years I would say to myself stop worrying, it's just another side to her personality, a bit like a new friend or a new strange hair colour that shocks you every time you walk past a mirror at first, but within a few days it's as if it's never been any different.
You will learn to live with and love the new her and new you, because you will change too, infact I wouldn't want it any other way because I have learnt some incredible things about my Ma that I would never have found out.
There are sad, lonely, heartbreaking moments but please don't forget the magic that is shared when you live in their shoes.
Keep us informed and ask as many questions as you need to,
Sleepwell.

Thank you for your kind words and positivity. I know I have to pull myself together, I can hear her clattering her walking aid around so she’s about to get up. X x

 

[April100]

Hi April and Just me
I know just how you both feel as another lockdown lone carer. I knew my Mum had problems prior to this, but whether lockdown has made things worse, or me being with her so much has enabled me to see it, I don’t know. Finding this site has been a revelation. I haven’t dared use the term dementia even to myself, but after an awful day today and reading so many other people’s experiences, I’m convinced that that is what Mum and I are dealing with. Though she thinks she fine.
Thank you all for your helpful incites and suggestions.

Hi Lizzy
Even after 7 years my mother thinks she is fine, and in common with Daisy's mum with she can convince people she is taking care of herself, can spin a really good story - has had the doctors in hospital fooled. After a surreal evening with her, a constantly interrupted night and a difficult morning (starting at 5am) I was ready for an alcoholic drink at 8:30am! I managed to resist.

It's taken me 7 years to find social workers I feel understand my situation - up until then I felt I was being ignored, and that as long as I was prepared to do the caring they didn't want to know. Si yes, it's lonely. My opinion is that if I was not the only one caring for mum - if I had a sibling that would take over for a day or a week, It wouldn't be so draining.

 

[TNJJ]

Hi Lizzy
Even after 7 years my mother thinks she is fine, and in common with Daisy's mum with she can convince people she is taking care of herself, can spin a really good story - has had the doctors in hospital fooled. After a surreal evening with her, a constantly interrupted night and a difficult morning (starting at 5am) I was ready for an alcoholic drink at 8:30am! I managed to resist.

It's taken me 7 years to find social workers I feel understand my situation - up until then I felt I was being ignored, and that as long as I was prepared to do the caring they didn't want to know. Si yes, it's lonely. My opinion is that if I was not the only one caring for mum - if I had a sibling that would take over for a day or a week, It wouldn't be so draining.

I’m with you there.Im an only with 2parents . I with dementia .1with heart failure and 2different locations.If it isn’t 1thing isn’t another. I hope you have a good day.

 

[April100]

I’m with you there.Im an only with 2parents . I with dementia .1with heart failure and 2different locations.If it isn’t 1thing isn’t another. I hope you have a good day.

TNJJ, I hope you have a good day too.
I hope you have found some 'connection' on this forum as you must feel pulled in all directions.
I have found reading of others in the same situation alleviates my feelings of loneliness and isolation.
All the best

 

[imthedaughter]

As we were changing I noticed the tell tale sign of red raw skin that needs acting upon, ( is this a common problem ?)

I think it must be because the social worker who visited my dad while he was, essentially, living in his own filth, did check him for skin conditions and said his skin was very good. As long as his skin was ok she was satisfied he was 'clean enough'. Dad has become afraid of falling in the shower and was wiping himself down when he remembered or could be bothered with a filthy flannel. I have no idea how his skin stayed in one piece, but I wonder this about the Victorians and Tudors as well...

Anyway, I would definitely mention it to the social worker if you ever speak with one. This all sounds very challenging, I hope you can get some help.

 

[Lalafatma]

Hi Whiperer
Thanks for the information on the Freeview channels - I will offer that option but generally she doesn't want to watch old films. There was a time when I could tell her all the options she could choose on TV but now it can only be two options (ditto for meals). She gets very confused by adverts so ITV/Freeview has its drawbacks. She can no longer follow any storyline or even a documentary - she just says 'this is confusing' so the best are programmes like Masterchef, Flog it. Nature programmes etc .


Hi
Most definitely not an expert but probably the person who knows my mother best, it gives you insight on what is what they would want for themselves. Caring for my mother on my own has tested me like nothing else I have experienced. I had the sort of childhood that builds resilience early on and my caring role has happened because there is no one else. If I had a choice I wouldn't be doing it - well there is a choice (do it or walk away) but I can't bring myself to do walk away although I have wanted to. In 7 years there have been lots of 'downs' a lot of tears,very few 'ups'. In the early days it was OK as my mother could be left for periods of time, I gave up full time work and worked mornings only , which not only gave me some normal life but also an income. For the last 3 years I haven't had a 'day off' from caring and I no longer work as the stress of meeting demands in two different places was taking a toll on my mental health.

The idea of being stuck in the house with my mother for lockdown spun me out . It is recognised that interrupted sleep, constantly changing situations is a form of torture. My mother will make her choice for a meal, then when I take it in she doesn't want it. I feel I can never get things right - but then I have never been able to please my mother which dredges up a lot of childhood frustrations. My mother has never been an 'easy' person and she has no idea of what I do for her - she thinks she does it all herself . I accept this as it is common with dementia/alzheimers.

Having reached 'carer breakdown' last Christmas, my mother was on track for some day care and also replacement care for me to have a break. That came to an abrupt halt with coronavirus. The NHS sent me a letter to say she had to be 'shielded' until 30th June (or longer). I wonder if they ever consider how that extended isolation feels to the person who is doing the shielding.

This is the one place (the forum) that I can be honest - I feel resentment, loneliness, abandonment, frustration. I feel I am living my mother's life not my own. When I read the posts I realise everyone's experience is different but we all feels those same emotions at one time or another.

Hi April 100 Struggling with this software and finding the messages again that I want to answer but wanted to make sure that I had said thank you for your really helful reply and that I have the utmost respect for you, your patience, coping strategies and the skills that you have developed in caring for your mum. Your situation is way more difficult than mine as my mum sleeps so much. Hope you have a good day.

 

[Lalafatma]

We are both in the same boat, the good ship Caring. Believe me I have bad moments, sometimes bad days. I read some threads here and count my blessings and cross my fingers for the road ahead. Lovely blue sky, mum just agreed to go for a gentle walk, home made rock cake and tea when we get home. Pile of ironing to do but that can wait. Have a good day and hope the sun is shining where ever you are.

Hi Whisperer I can't tell you how helpful I have found your posts. I really like your approach of self compassion which has been perfect for me and I am practicing. I am struggling with the software of this forum but hope I can continue to be part of this community. Hope you enjoy some calm and free Vitamin D today.