• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

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    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

How many of us manage to keep a job going?

Starting on a journey

Registered User
Jul 9, 2019
80
I reduced my hours when mum moved in five years ago, and then temped until my husband died 17 months ago. It would be nice to work ! Only today I discussed it with my daughter who said yes but you would need carers (mum is frail) and she would be demanding when you get home! We decided that I continue going to craft clubs for a break and if carers are needed then they cover my social time not work time. Quality of life for me.
Financially a bad decision for me, but I will have to manage. I won't have the money I would have had if I had continued working but my husband died suddenly so it's concentrated my mind that I try and have some fun. Difficult when mum lives with you but it is doable with 3 beautiful and generous adult children who also act as back up to their auntie who cares for their other nana.
 
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Emac

Registered User
Mar 2, 2013
181
Hi maryjoan

I don’t think anyone should live their life for the person with dementia, although I know when submerged in caring and support needs that just keep increasing it’s hard to step back far enough to see that. We all need to live our own lives otherwise we might as well have dementia too and that would be two lives ruined instead of just one. No one should feel they have no choice in this matter as giving up your job is likely to have terrible consequences for you financially socially and in terms of your mental health as others here have said.
I think we should only give up things we actually don’t mind giving up...like you wanting to spend time playing board games. We shouldn’t give up anything that’s key to our own health and well-being.
My Dad died a few weeks ago of cancer. When we knew his illness was terminal I cancelled a weekend away because I wanted to spend the time with him...something I was happy to do. However I remember his words...you shouldn’t cancel your plans for me. You have to live your own life. Most parents with this awful disease would say the same to us if they could.
 

Laura.lew

New member
Nov 7, 2017
1
Worksop
I work 15 hrs per week and look after my dad,i am the only person to care for him as he wont accept help from anywhere else. His condition has got worse and its very very hard juggling work around him. Up their in the morning back 4hrs later after work for his dinner etc and back again tea time-i feel like i put on my workmates as i cant do various shifts but on the plus side its the only social life i get and im glad of it. It is hard to be a carer with a job tho.
 

Mary-jane

Registered User
Jun 2, 2017
1
Just wondering how many of us manage to keep our own jobs going when we are live in carers for our PWD?

Is it impossible? Or just difficult?

I have managed to keep working from home for going on 3 years now, but I do find that breaking at about 11.30am when he wants to play his board games until lunch time, takes away my motivation to work in the afternoon.It's as though my brain has lost all motivation.

I love my job as a genealogist and am still getting lots of commissions coming in even though I don't advertise - and I am sure it helps keep me sane, but for this 'down' I have in motivation after playing his beloved board games - and the board games are literally the only thing we still do together, so loathe to give them up.

I did have the idea of an office outside the home, but various family members were correct to point out to me that OH cannot be left on his own for any length of time now - I missed that boat by a year or so....

So, back to original thought - are you still able to work if you want to?

I now only go to work one day a week, this is my respite day where I can talk to people and feel normal, I don't take wages I'd happily pay them to have me there. I am able to pop back home if I need to as I'm only a few minutes from home.
 

Crafts101

Registered User
Aug 22, 2019
40
Have been away from the forum for a while but saw this strand thought I would post. If only because it has been 'one of those days'. I have been struggling to manage my full time job with my caring role for Mum, as I live with her full time and until now she has not accepted any other care in to 'her' house. We have 'managed' in our own way, and only recently she has accepted help in for a couple of hours a week (my escape time) and work have been very supportive, giving me the technogy to work from home, or try to, as I find I can only really manage the equivalent of 3 days in the hours I can grab to actually work. I know I have to keep working to ensure I have a future financially. The house will end up sold to pay for the future care home bills and my life will change once again. I am OK with that, change happens, and Is inevitable, the trouble is trying to cope with the now and the emotional roller-coaster of caring for PWD and caring for my own needs. Plus also having enough to give to work and a job I love but now I have to admit I can't really fulfill from a distance, as much as we are all trying to make it work. I am so very grateful that they are willing to do so and have supported me. So many employers don't or won't. Also really miss the real - time social interaction and the feeling of being the old me, a person not caught up in dementia and caring; needing to always explain why I am behind in things and not available for meetings. It feels like there is always another person with me now, even if they are not really there, it's never just me - if that makes sense? I am starting to loose myself to this now, it feels, and I want to try to find a way to maintain a 'lifeline' to the future and my job seems to be it, if I can just hold on. But it is a struggle. Today is my 49th birthday and work colleagues when I managed to call in there briefly this afternoon(in my hour escape time) were joking about the next year's big one and planning the party now. A major project I was working on has its opening event tomorrow and I can't be there. A bit of a birthday wobble and emotional vent here, but the trouble is we most times 'apply' for a job, none of us applied for the role of carer did we?
 

Dimpsy

Registered User
Sep 2, 2019
1,037
You're right @Crafts101, we didn't apply for our carer jobs (I wouldn't have got through the interview!).

Mum moved in with us two and a half years ago, the same time as my husband retired. I continued to work full time, to the detriment of OH's mental health, he became depressed. I have cut down to two days a week this year, OH is much better now (anti-depressants help), but I feel guilty for working at all.
I love my job and the people I work with and am determined to keep working for as long as possible, does that make me selfish?
If I didn't have my job to look forward to, I think I would be taking anti-depressants too.
 

Crafts101

Registered User
Aug 22, 2019
40
That's the thing, to be able to care for someone else to this degree, as much as you want to, and as often as you actually do, put them first; really we have to be 'selfish' and put ourselves first instead otherwise we are not going to survive to be there at all. Like the airplane emergency video - put your own air mask on first before helping others. However, it is easy enough to say it but so hard to manage to do, especially where commitment to work is involved. Though I do wonder these days if I could add 'circus skills' to my cv, with all the juggling and plate spinning, and high wire walking it feels like I do daily. When the stresses of work feel like 'respite' from the daily care role,......!! But it is a lifeline to normality of sorts. And maybe we should all consider giving ourselves new job titles as CEO's as we are now pretty much in charge of everything, whether we wanted to or not.
 

SandraKD

Registered User
Nov 26, 2018
39
Having read all of these comments I feel extremely glad that, when OH had his stroke in March and then went to Rehab, when Rehab were sending him home I said that he needed the fullest care package that he could have as I worked away a lot of the time. Which I do, I am frequently away from home Monday to Friday, and, at the moment, with the carer's in 4 times as day and my daughter who lives with us as backup cook etc., it all works well at the moment.
Whatever happens in the future, I will not be giving up my job - that is my line in the sand.
I'm too young (58) to be consumed by this horrendous disease.
 

PalSal

Registered User
Dec 4, 2011
780
Pratteln Switzerland
@maryjoan
I needed to work from many years early in the diagnosis. It just all played out...full time, to part time , to retirement. AS OH progressed and my outside work diminished , it kind of went at its own pace. But I was pretty tired at the end of the my 100% job, but I did not know I had leukemia so it was all pretty stressful. But then I went into remission worked part time and now fully recovered and fully pensioned. I wish I had something to do part-time, to engage my brain. I guess you could just take fewer clients as a genealogist, scale down but keep your fulfilling work. Would that be possible? Your work sounds very interesting.
 

maryjoan

Registered User
Mar 25, 2017
1,397
South of the Border
Having read all of these comments I feel extremely glad that, when OH had his stroke in March and then went to Rehab, when Rehab were sending him home I said that he needed the fullest care package that he could have as I worked away a lot of the time. Which I do, I am frequently away from home Monday to Friday, and, at the moment, with the carer's in 4 times as day and my daughter who lives with us as backup cook etc., it all works well at the moment.
Whatever happens in the future, I will not be giving up my job - that is my line in the sand.
I'm too young (58) to be consumed by this horrendous disease.
You are quite right - you need to preserve your life despite this disease. I wish so much that I had been able to - my OH had an horrendous disease that practically killed him just as I suspected he had dementia. The hospital said they were going to put him into rehab. and at the last minute refused to despite my protestations. He came home as a very sick man, with just 2 days notice, and with obvious dementia, and could not be left alone. So I closed my genealogy shop at very short notice.
I was in turmoil - I wish I had the chance to plan my future -
But a good day today, he is sat watching rugby and I am working !!
 

secrets

Registered User
May 27, 2017
17
I do work from home and continue to do so even though it is increasingly hard,i did have burnout months ago and my partner was admitted to hospital and then a care home which supposed to be for 3 days,but those 3 days turned into almost 3 months,and during that time David had lost half his bodyweight and had all but given up,he looked like someone from Auschwitz,and after my determination and doggedness I did get him home,and his improvement has been remarkable,he's eating ,talking and looks very well.And so yes,i do continue to work from home and juggle everything as best I can.
He has been home now for 8 weeks and not once has the doctor,District nurse or social services been near the place or even enquired how he is,and also his medication used to be delivered in a dossett box,but that has also ceased,and now he is almost out of tablets and I have no prescription form to get more,so I now have to chase the health centre up.
It is truly appalling how people with dementia are forgotten about.
 

maryjoan

Registered User
Mar 25, 2017
1,397
South of the Border
@maryjoan
I needed to work from many years early in the diagnosis. It just all played out...full time, to part time , to retirement. AS OH progressed and my outside work diminished , it kind of went at its own pace. But I was pretty tired at the end of the my 100% job, but I did not know I had leukemia so it was all pretty stressful. But then I went into remission worked part time and now fully recovered and fully pensioned. I wish I had something to do part-time, to engage my brain. I guess you could just take fewer clients as a genealogist, scale down but keep your fulfilling work. Would that be possible? Your work sounds very interesting.
It is very interesting indeed, and I love it - but it needs concentration - which is not always possible ...my clients are very understanding. thankfully.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
That's the thing, to be able to care for someone else to this degree, as much as you want to, and as often as you actually do, put them first; really we have to be 'selfish' and put ourselves first instead otherwise we are not going to survive to be there at all. Like the airplane emergency video - put your own air mask on first before helping others. However, it is easy enough to say it but so hard to manage to do, especially where commitment to work is involved. Though I do wonder these days if I could add 'circus skills' to my cv, with all the juggling and plate spinning, and high wire walking it feels like I do daily. When the stresses of work feel like 'respite' from the daily care role,......!! But it is a lifeline to normality of sorts. And maybe we should all consider giving ourselves new job titles as CEO's as we are now pretty much in charge of everything, whether we wanted to or not.
I have just caught up on this thread, wow ; thank you ! Brilliantly expressed!
Even being self employed - artist & having a support worker ( I’m registered disabled) to help with my prep work a few hours a week through access to work ..... I still find myself daily struggling to get time to do my work. It’s hard enough just to keep up with the paper work etc. My Mum & Dad don’t live with me, Dads in a care home, Mum has carers in 4 times a day. Yet I struggle to balance life. So how full time carers manage I have no idea.

visiting the parents -
- one day a week I drive a 5- 6 hour round trip to see Mum
That’s almost a days work in travelling! Then spending time with Mum doing her shopping & making sure any letters still sent to mum are dealt with despite years of LPA we still have to sort some mail out!
Sorting out any issues on home maintenance etc. Meeting health teams etc; all this is done in one day a week ! it’s a good 16-17 hour day. The exhaustion I have the next few days leaves me bed bound & in extra pain - I have acute ME after having TIA’s over 20 years ago. Id like to point out I’m on the higher rate of PIP care but had my higher rate of mobility taken away( yes I contested it all the way but the fact that I drove such long distances went against me along with the fact that I don’t use a stick - I kept tripping over it !)
-Dads in a care home that is not meeting his care needs ( don’t worry folks it’s another thing that’s now in hand !) That has brought extra problems & again it’s down to me to sort it out.

- so my time isn’t my own
- I have a duty of care as LPA to ensure best interests of my PWD are in place
- my life if dominated by sorting out two PWD welfare. Both have different needs & are at different stages.
- my life revolves around ensuring that those daily needs of each parent are met!

no one else will do that

- both parents due to my continuing diligence & care have had the failings of the system highlighted & safeguarding issues raised. These are ongoing for Dad, meanwhile Mum now has the care package in place she needs - but I still have to be the liaison point as her GP failed Mum with dramatic consequences!

- if I didn’t sacrifice my time & quality of life what would have happened to my Mum & Dad?

- Mum wouldn’t have had the diagnosis she so desperately needed & the medication & help.

- Dad would not have had social services investigate his home for failing to meet his needs.

- my Mum who was unbeknown to me in had dementia was caring for my Dad who was diagnosed with dementia......

So to anyone who says well your parents wouldn’t want you not to have a life of your own , I totally agree my parents before dementia would have said that. But this is now my parents with dementia & the normal rules of life just don’t apply with dementia.

it’s a terminal diagnosis which isn’t treated as a terminal disease! The PWD is robbed of the ability often to express pain & discomfort, who else but a loved one can know the little signs that indicate distress.

in all honesty my parents have regressed, my mum to a toddler & my Dad to a baby. That is the stage of their care needs - I didn’t have a life when caring for my own young children & I don’t have one now. There isn’t a difference between the two experiences except funding & my ability to care for the PWD - otherwise the similarities are frighteningly similar.

Yes it’s not fair
Yes it means I have given up so much - work opportunities, social life etc but for Me I know that I have done everything I could have possibly done to ensure that they had the best care in place possible; & when the system failed them I was there to make sure that those failures were rectified.
Yes my own health & happiness has suffered but my parents are at end stage dementia- dignity & being pain free seems to be more important in my mind; maybe I’ve got it all wrong but I need to know that I did everything I could do

sorry folks if I’ve upset anyone but I’ve given u so much because of my parents dementia- perhaps I’m trying to justify it
 
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DennyD

Registered User
Dec 6, 2016
74
Porthcawl, South Wales
Whatever choices or decisions we make we do so because we feel they are right for our situation, we should not feel or be made to feel bad about them whether at the time of making them or feel regretful later. For me that's wasted energy on an already fragile and emotional life. If your decision makes you able to manage and gives you "you time" to stay connected and have enjoyment then grasp it.
 

Crafts101

Registered User
Aug 22, 2019
40
As the philosophy says - we only ever have control over our own thoughts and our own actions. The rest is not ours to control(as much as we would like to). So it has to be about ourselves in the first instance, as wrong or selfish as that can feel sometimes, or else we can't be there for others. That's not to say its in any way easy or as simple as it sounds. As I mentioned before, "put on your own oxygen mask first before trying to help others" is counterintuitive but logically the best way to ensure a positive outcome for all.
 

Red Eyes

Registered User
Jun 15, 2019
11
I work two mornings a week and as I have always worked while OH who is 15 years older retired way before he became ill, it is part of our routine and he is used to it. The down side, as someone else said, is what mayhem I might find when I get home. I am thinking of giving up because I am not really enjoying the job anymore. I only go now because of the contact with sane people. My fear is being stuck at home without the guaranteed get out of jail card.
I did hear about someone who left her job but didn’t tell her husband. Just carried on going out for two days a week! Tempting!
My situation is a bit similar. My husband 17 years older, he is 83, I am 66. I had been working full time up to his real turning point last March. I have been cutting down gradually now on 12 hours a week working 4 hours each on a Mon, Wed and Fri. with set hours 9:30 - 1:30. This had been helping. However, I think he he now showing signs again of decline. A carer comes in for a 1/2 hour on each of those days to check on him. He used to be fine with it, but the past few weeks all he does is complain about it when I get home and some of the stories he makes up are pretty unbelievable! And yes, things are in a bit of a state, but so far nothing too major. I find that work is my escape and keeping in touch with the outside. Otherwise I would be very isolated. Thankfully my work has been very supportive. Yes, I feel very guilty about leaving him. However I also feel that no matter how much time I would give to him he would want more. I am going to try my hardest to stick with a job for just as long as possible. You have to give some thought to yourself as well. This might sound selfish on my part but I also know that probably in the not too distant future I will be forced to give up work.
 

DennyD

Registered User
Dec 6, 2016
74
Porthcawl, South Wales
I have just caught up on this thread, wow ; thank you ! Brilliantly expressed!
Even being self employed - artist & having a support worker ( I’m registered disabled) to help with my prep work a few hours a week through access to work ..... I still find myself daily struggling to get time to do my work. It’s hard enough just to keep up with the paper work etc. My Mum & Dad don’t live with me, Dads in a care home, Mum has carers in 4 times a day. Yet I struggle to balance life. So how full time carers manage I have no idea.

visiting the parents -
- one day a week I drive a 5- 6 hour round trip to see Mum
That’s almost a days work in travelling! Then spending time with Mum doing her shopping & making sure any letters still sent to mum are dealt with despite years of LPA we still have to sort some mail out!
Sorting out any issues on home maintenance etc. Meeting health teams etc; all this is done in one day a week ! it’s a good 16-17 hour day. The exhaustion I have the next few days leaves me bed bound & in extra pain - I have acute ME after having TIA’s over 20 years ago. Id like to point out I’m on the higher rate of PIP care but had my higher rate of mobility taken away( yes I contested it all the way but the fact that I drove such long distances went against me along with the fact that I don’t use a stick - I kept tripping over it !)
-Dads in a care home that is not meeting his care needs ( don’t worry folks it’s another thing that’s now in hand !) That has brought extra problems & again it’s down to me to sort it out.

- so my time isn’t my own
- I have a duty of care as LPA to ensure best interests of my PWD are in place
- my life if dominated by sorting out two PWD welfare. Both have different needs & are at different stages.
- my life revolves around ensuring that those daily needs of each parent are met!

no one else will do that

- both parents due to my continuing diligence & care have had the failings of the system highlighted & safeguarding issues raised. These are ongoing for Dad, meanwhile Mum now has the care package in place she needs - but I still have to be the liaison point as her GP failed Mum with dramatic consequences!

- if I didn’t sacrifice my time & quality of life what would have happened to my Mum & Dad?

- Mum wouldn’t have had the diagnosis she so desperately needed & the medication & help.

- Dad would not have had social services investigate his home for failing to meet his needs.

- my Mum who was unbeknown to me in had dementia was caring for my Dad who was diagnosed with dementia......

So to anyone who says well your parents wouldn’t want you not to have a life of your own , I totally agree my parents before dementia would have said that. But this is now my parents with dementia & the normal rules of life just don’t apply with dementia.

it’s a terminal diagnosis which isn’t treated as a terminal disease! The PWD is robbed of the ability often to express pain & discomfort, who else but a loved one can know the little signs that indicate distress.

in all honesty my parents have regressed, my mum to a toddler & my Dad to a baby. That is the stage of their care needs - I didn’t have a life when caring for my own young children & I don’t have one now. There isn’t a difference between the two experiences except funding & my ability to care for the PWD - otherwise the similarities are frighteningly similar.

Yes it’s not fair
Yes it means I have given up so much - work opportunities, social life etc but for Me I know that I have done everything I could have possibly done to ensure that they had the best care in place possible; & when the system failed them I was there to make sure that those failures were rectified.
Yes my own health & happiness has suffered but my parents are at end stage dementia- dignity & being pain free seems to be more important in my mind; maybe I’ve got it all wrong but I need to know that I did everything I could do

sorry folks if I’ve upset anyone but I’ve given u so much because of my parents dementia- perhaps I’m trying to justify it
No need to be sorry, I can fully understand and recognise your thoughts. You don't need to justify anything. Instead you are admired for your love and devotion to those you care for.
 

White Rose

Registered User
Nov 4, 2018
357
I have just caught up on this thread, wow ; thank you ! Brilliantly expressed!
Even being self employed - artist & having a support worker ( I’m registered disabled) to help with my prep work a few hours a week through access to work ..... I still find myself daily struggling to get time to do my work. It’s hard enough just to keep up with the paper work etc. My Mum & Dad don’t live with me, Dads in a care home, Mum has carers in 4 times a day. Yet I struggle to balance life. So how full time carers manage I have no idea.

visiting the parents -
- one day a week I drive a 5- 6 hour round trip to see Mum
That’s almost a days work in travelling! Then spending time with Mum doing her shopping & making sure any letters still sent to mum are dealt with despite years of LPA we still have to sort some mail out!
Sorting out any issues on home maintenance etc. Meeting health teams etc; all this is done in one day a week ! it’s a good 16-17 hour day. The exhaustion I have the next few days leaves me bed bound & in extra pain - I have acute ME after having TIA’s over 20 years ago. Id like to point out I’m on the higher rate of PIP care but had my higher rate of mobility taken away( yes I contested it all the way but the fact that I drove such long distances went against me along with the fact that I don’t use a stick - I kept tripping over it !)
-Dads in a care home that is not meeting his care needs ( don’t worry folks it’s another thing that’s now in hand !) That has brought extra problems & again it’s down to me to sort it out.

- so my time isn’t my own
- I have a duty of care as LPA to ensure best interests of my PWD are in place
- my life if dominated by sorting out two PWD welfare. Both have different needs & are at different stages.
- my life revolves around ensuring that those daily needs of each parent are met!

no one else will do that

- both parents due to my continuing diligence & care have had the failings of the system highlighted & safeguarding issues raised. These are ongoing for Dad, meanwhile Mum now has the care package in place she needs - but I still have to be the liaison point as her GP failed Mum with dramatic consequences!

- if I didn’t sacrifice my time & quality of life what would have happened to my Mum & Dad?

- Mum wouldn’t have had the diagnosis she so desperately needed & the medication & help.

- Dad would not have had social services investigate his home for failing to meet his needs.

- my Mum who was unbeknown to me in had dementia was caring for my Dad who was diagnosed with dementia......

So to anyone who says well your parents wouldn’t want you not to have a life of your own , I totally agree my parents before dementia would have said that. But this is now my parents with dementia & the normal rules of life just don’t apply with dementia.

it’s a terminal diagnosis which isn’t treated as a terminal disease! The PWD is robbed of the ability often to express pain & discomfort, who else but a loved one can know the little signs that indicate distress.

in all honesty my parents have regressed, my mum to a toddler & my Dad to a baby. That is the stage of their care needs - I didn’t have a life when caring for my own young children & I don’t have one now. There isn’t a difference between the two experiences except funding & my ability to care for the PWD - otherwise the similarities are frighteningly similar.

Yes it’s not fair
Yes it means I have given up so much - work opportunities, social life etc but for Me I know that I have done everything I could have possibly done to ensure that they had the best care in place possible; & when the system failed them I was there to make sure that those failures were rectified.
Yes my own health & happiness has suffered but my parents are at end stage dementia- dignity & being pain free seems to be more important in my mind; maybe I’ve got it all wrong but I need to know that I did everything I could do

sorry folks if I’ve upset anyone but I’ve given u so much because of my parents dementia- perhaps I’m trying to justify it
It seems like you were really given a rough deal in life - to have both parents with Dementia must be unbelievably heartbreaking. I feel like my situation is not really so bad in that I can provide care for my partner while still working part time (I have to work to keep some part of myself and normality - I have 10 years before retirement, my partner is a lot older than me). What people who haven't experienced dementia don't realise is how desperate the situation of caring and juggling can be and why it's so vital to find a cure for this horrendous disease.