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Living with my mum who has dementia

Lalafatma

Registered User
May 7, 2020
19
Sorry I posted twice. I manually deleted the first reply cos i kind of ran out of energy - but late last night after I'd written the second one found the first one had been sent. The mysteries of technology.
 

canary

Registered User
Feb 25, 2014
13,689
South coast
I booked a session with a psychological counsellor (today) on line which I used my mum's money for (she would definitely want to support me in any way she can). It was really useful
Im glad that you found the counselling session helpful, but please be careful about using your mums money. I know that previously she would have wanted to help you in any way that she could, but now the tables have been turned and your duty is to use her money for her and in her best interest. I dont suppose anyone would worry about a one off small sum like that, but please dont make a habit of it.
xx
 

April100

Registered User
Nov 13, 2016
13
You are more than welcome. Just a thought that might help. Channel 40, 45 and 50 On freeview show movies. Some weekend day times there are really old black and white movies showing. I sit sometimes and work out that the film is over 60yo. However for my mum that lead actor is someone she remembers from going to “the flicks” years ago. I am advised “he is a bit of alright”. Control yourself mother. Point is perhaps your mum might recognise some of the old stars eh Bob Hope, Bing Crosby? Just thought I would mention the point as your mum is watching TV but you are selecting the channels.
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 April 100 Thanks for your response - 7 years. That's amazing. I expect I need advice from you. Re the resentment and anger In the end I booked a session with a psychological counsellor (today) on line which I used my mum's money for (she would definitely want to support me in any way she can). It was really useful and basically he agreed that self compassion could help in dealing with the childhood stuff and his opinion was that due to lockdown my situation had gone from very difficult to off the scale. In a nutshell! I feel encouraged that the emotions are justified - not that I'm a bad person (and if I understand them they are less likely to pop up expectedly. So I will be working on that.
Hi April 100 you're welcome. Sounds as though you're an expert if you've been looking after your mum for 7 years! It does sound a long day. Can you leave her on her own at all? I feel I need to fess up here that because of a collapsed spine and her great love of sleeping and 'day dreaming' my mum goes back to bed at 9 am till 12 then has a nap from 2-4.30 and is back in bed at 7.30 pm. At night she sleeps 12 hours straight (apart from independently using the commode once or twice). If she's asleep she never gets up. I have to wake her. She's like sleeping beauty. You're all going to hate me now! I don't think I could do this if I couldn't leave her to go out for a cycle ride or walk round the park. How do you manage?
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.
 

Just me

Registered User
Nov 17, 2013
391
Hi @April100, I could have written your last post.
I’ve been looking after mum for 7 years, I was made redundant December 2011 and had all sorts planned. Fast forward to 2013 and everything changed.

I’m now at the stage of looking after mum 24/7 on my own and until the lockdown ends feel I’m between a rock and a hard place - it’s too tough to keep going - but don’t think I can consider a care home/respite (if any would accept her) with Covid 19.

To be honest the virus seems the least of my concerns, its just made things so much harder and more lonely.

Mums condition has got steadily worse since lockdown and now (after a recent hospital admission) I haven’t been able to get out even for a short walk.

At my bleakest I feel I’m the only one struggling on my own and having these feelings so thanks for posting.
 

April100

Registered User
Nov 13, 2016
13
Hi @April100, I could have written your last post.
I’ve been looking after mum for 7 years, I was made redundant December 2011 and had all sorts planned. Fast forward to 2013 and everything changed.

I’m now at the stage of looking after mum 24/7 on my own and until the lockdown ends feel I’m between a rock and a hard place - it’s too tough to keep going - but don’t think I can consider a care home/respite (if any would accept her) with Covid 19.

To be honest the virus seems the least of my concerns, its just made things so much harder and more lonely.

Mums condition has got steadily worse since lockdown and now (after a recent hospital admission) I haven’t been able to get out even for a short walk.

At my bleakest I feel I’m the only one struggling on my own and having these feelings so thanks for posting.
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.
 

Just me

Registered User
Nov 17, 2013
391
Hi April 100
I know what you mean about surreal conversations. I used to hate food shopping but since caring for mum I seemed to treat a trip to Sainsburys as a social outing and I got to know a lot of the staff quite well. I can’t wait to get a trolley and surf the aisles 🙂

I miss my walks and occasional meet up with friends, I shall treasure them even more when this is eventually over.
 

Whisperer

Registered User
Mar 27, 2017
219
Hi April 100
I know what you mean about surreal conversations. I used to hate food shopping but since caring for mum I seemed to treat a trip to Sainsburys as a social outing and I got to know a lot of the staff quite well. I can’t wait to get a trolley and surf the aisles 🙂

I miss my walks and occasional meet up with friends, I shall treasure them even more when this is eventually over.
Hello

Perhaps I can add a little to your anticipation. Up until lockdown I worked two nights (12 hours total) in a supermarket. Periodically new lines were added to an aisle, which apparently were many months if not longer in the planning. I believe during the lockdown to date little if any of this has been released. It would be hard to measure customer like or dislike of new products in such unusual circumstances. So as you one day pull out your trolley to again surf the aisles look out for the new stuff. BTW I fully get your comments about what others take for granted becoming a treat for you. After answering the same questions over and over, trying distraction with various degrees of success, preparing agreed meals only to be told I do not feel hungry by mum, actually stacking shelves which never presented such issues, having a laugh with co-workers about this and that (crucially not Dementia) I can honestly say I really enjoyed the job. It was my weekly “engage with non Dementia life moment”. It went (just to risky) along with the carers group in March 20. Maybe one day I will get back there, best I can manage now.
 

Lalafatma

Registered User
May 7, 2020
19
Im glad that you found the counselling session helpful, but please be careful about using your mums money. I know that previously she would have wanted to help you in any way that she could, but now the tables have been turned and your duty is to use her money for her and in her best interest. I dont suppose anyone would worry about a one off small sum like that, but please dont make a habit of it.
xx
I decided not to in the end even though she would want me to. Too many people around who wouldn't understand.
 

Fitzalan

Registered User
Apr 25, 2020
15
Oh gosh yes. So many issues / feelings / behaviours on here that I recognise. I'm lucky in that I work in IT and can work from home (though there have been a few embarrassing challenges with that on conference calls :) ), so at least I have something else to occupy my brain during the week. If it was all about caring 24x7 I would probably have been sectioned by now. My mum is 94, and until twisting her knee a few weeks ago was pretty mobile, and could wander off and "sort out" her clothes (which generally resulted in me taking various things out of plastic bags at the side of the bed and putting them back in the drawers, but still..... ) , but now she's less mobile she just sits in the chair and asks me the same questions over and over again. She can't see the tv very well (macular degeneration) so tends to talk through that too, and talking books haven't been a great success either. And she's paranoid that if I leave the house I'm not going to come back, so getting my half hour of daily exercise is stressful too.
This year I had made an arrangement with my sister so that I could take at least one weekend off a month and go and do my own thing. I had a day off in the local big city in Jan and had my hair cut and wandered round the art galleries and the odd shop. And in Feb I did a day's wood carving course and met up with some friends, and had more courses planned. But none of that is possible now, or for the foreseeable future, and that hurts. My sister sent me a text this week saying she and her husband had booked a week away in September, hoping they would be able to go by then. They are retired and can go where they want, when they want, but let me know so that I don't book anything at the same time. If only! So that has upset me, whereas normally it wouldn't have.
So I think what I'm trying to say is that life is difficult for carers at the best of times, and these are certainly not the best of times. But I find this forum useful, even if I don't contribute much, or often, in finding hints and tips, and in knowing there is somewhere I can go if I need help, and in knowing I'm not alone with my feelings and frustrations.
Thank you.
 

Just me

Registered User
Nov 17, 2013
391
Hello

Perhaps I can add a little to your anticipation. Up until lockdown I worked two nights (12 hours total) in a supermarket. Periodically new lines were added to an aisle, which apparently were many months if not longer in the planning. I believe during the lockdown to date little if any of this has been released. It would be hard to measure customer like or dislike of new products in such unusual circumstances. So as you one day pull out your trolley to again surf the aisles look out for the new stuff. BTW I fully get your comments about what others take for granted becoming a treat for you. After answering the same questions over and over, trying distraction with various degrees of success, preparing agreed meals only to be told I do not feel hungry by mum, actually stacking shelves which never presented such issues, having a laugh with co-workers about this and that (crucially not Dementia) I can honestly say I really enjoyed the job. It was my weekly “engage with non Dementia life moment”. It went (just to risky) along with the carers group in March 20. Maybe one day I will get back there, best I can manage now.
Well I’m champing on the bit now @Whisperer.
I must say the staff were lovely, perhaps they were being kind as I’d talk to anyone who stood still enough 😊
I really miss company but hey ho, got to carry on.
 
Last edited:

Just me

Registered User
Nov 17, 2013
391
Oh gosh yes. So many issues / feelings / behaviours on here that I recognise. I'm lucky in that I work in IT and can work from home (though there have been a few embarrassing challenges with that on conference calls :) ), so at least I have something else to occupy my brain during the week. If it was all about caring 24x7 I would probably have been sectioned by now. My mum is 94, and until twisting her knee a few weeks ago was pretty mobile, and could wander off and "sort out" her clothes (which generally resulted in me taking various things out of plastic bags at the side of the bed and putting them back in the drawers, but still..... ) , but now she's less mobile she just sits in the chair and asks me the same questions over and over again. She can't see the tv very well (macular degeneration) so tends to talk through that too, and talking books haven't been a great success either. And she's paranoid that if I leave the house I'm not going to come back, so getting my half hour of daily exercise is stressful too.
This year I had made an arrangement with my sister so that I could take at least one weekend off a month and go and do my own thing. I had a day off in the local big city in Jan and had my hair cut and wandered round the art galleries and the odd shop. And in Feb I did a day's wood carving course and met up with some friends, and had more courses planned. But none of that is possible now, or for the foreseeable future, and that hurts. My sister sent me a text this week saying she and her husband had booked a week away in September, hoping they would be able to go by then. They are retired and can go where they want, when they want, but let me know so that I don't book anything at the same time. If only! So that has upset me, whereas normally it wouldn't have.
So I think what I'm trying to say is that life is difficult for carers at the best of times, and these are certainly not the best of times. But I find this forum useful, even if I don't contribute much, or often, in finding hints and tips, and in knowing there is somewhere I can go if I need help, and in knowing I'm not alone with my feelings and frustrations.
Thank you.
Yes life was difficult before and one thing that gets to me is others talking about what they’ll do when this is over, whereas all I can look forward to is a little bit of respite or finding a residential home for mum.

I’m finding short walks stressful too and for various reasons haven’t left the house for weeks. Also mum keeps saying she’s frightened she’s going to loose me 😔 but I’ve made a decision this evening. I know she will be safe for a short while so I’m going to make sure I go out for a little while each day. Hope you can do the same and enjoy the fresh air and exercise.
 

Daisymayormaynot

New member
May 24, 2020
9
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.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,861
Nottinghamshire
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.
 

Lalafatma

Registered User
May 7, 2020
19
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.
 

Lalafatma

Registered User
May 7, 2020
19
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.
I just have the utmost respect for you.
 

Whisperer

Registered User
Mar 27, 2017
219
I just have the utmost respect for you.
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.
 

Whisperer

Registered User
Mar 27, 2017
219
Oh gosh yes. So many issues / feelings / behaviours on here that I recognise. I'm lucky in that I work in IT and can work from home (though there have been a few embarrassing challenges with that on conference calls :) ), so at least I have something else to occupy my brain during the week. If it was all about caring 24x7 I would probably have been sectioned by now. My mum is 94, and until twisting her knee a few weeks ago was pretty mobile, and could wander off and "sort out" her clothes (which generally resulted in me taking various things out of plastic bags at the side of the bed and putting them back in the drawers, but still..... ) , but now she's less mobile she just sits in the chair and asks me the same questions over and over again. She can't see the tv very well (macular degeneration) so tends to talk through that too, and talking books haven't been a great success either. And she's paranoid that if I leave the house I'm not going to come back, so getting my half hour of daily exercise is stressful too.
This year I had made an arrangement with my sister so that I could take at least one weekend off a month and go and do my own thing. I had a day off in the local big city in Jan and had my hair cut and wandered round the art galleries and the odd shop. And in Feb I did a day's wood carving course and met up with some friends, and had more courses planned. But none of that is possible now, or for the foreseeable future, and that hurts. My sister sent me a text this week saying she and her husband had booked a week away in September, hoping they would be able to go by then. They are retired and can go where they want, when they want, but let me know so that I don't book anything at the same time. If only! So that has upset me, whereas normally it wouldn't have.
So I think what I'm trying to say is that life is difficult for carers at the best of times, and these are certainly not the best of times. But I find this forum useful, even if I don't contribute much, or often, in finding hints and tips, and in knowing there is somewhere I can go if I need help, and in knowing I'm not alone with my feelings and frustrations.
Thank you.
You are more than welcome. One ray of sunlight under lockdown is that quite a few people seem to have recently joined this forum. So to all the lurkers and new viewers here welcome. It does not matter if you post or not just so long as you get something out of your visit. Mixed and bad emotions seem to go hand in hand with caring. A life experience we had not budgeted for, hopes and dreams on hold, frustration and anxiety regular passing friends (?), etc. Guess we must be in it for the career prospects, pay, social recognition, etc. Oh sorry I had dozed off into an alternative reality on that last bit. Please stay safe and well, the sun has got his hat on today, try and see the bright side when ever you can, we all know the grey wet days as well
 

Fitzalan

Registered User
Apr 25, 2020
15
Yes life was difficult before and one thing that gets to me is others talking about what they’ll do when this is over, whereas all I can look forward to is a little bit of respite or finding a residential home for mum.

Ah yes, the well-meaning but impossible invites to get-togethers in September, particularly if they involve train and tube travel. And my mum saying that if I want to book a holiday she'll go with me. Hmm, not sure how that would be a holiday for me.

As for the exercise, well I promise to try and get out once a day if you do Just Me. Deal?
 

Fitzalan

Registered User
Apr 25, 2020
15
Please stay safe and well, the sun has got his hat on today, try and see the bright side when ever you can, we all know the grey wet days as well
The sun has most definitely got its hat on, and I am off to enjoy a few hours of vitamid d before my mandatory (for me) half hour of daily exercise. Hope everyone has a sun-filled day.