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How many of us manage to keep a job going?

marionq

Registered User
Apr 24, 2013
6,132
Scotland
I just want to say to all those caring and juggling life and everyone’s post has made me cry and think I’m not the only one going through all that. It helps me understand my situation in some ways are better and some worst but still I’m standing.
I’m approaching my 40 soon and I’ve been caring for my mother for the last 20 years in her own home but since last two years she had a stroke and has had dementia she’s had to move in with me due to needing full time care. I work part time, Have young children to look after too. Husband isn’t in the best of health either and he needs care too. Life isn’t the same anymore I can’t switch off both physically and mentally exhausted.
Work is break for me otherwise I’d have a complete breakdown, my colleagues are in their 60’s and fully understand the pressure of caring for someone with dementia how mentally challenging it can be. Sometimes I wish I could be left on a island with no worries, I don’t know what the future holds but one peace of mind I have is my mother is with me no matter how hard it is.
This is an illness like no other. It tests the carers mental and physical strength, emotional endurance, and temperament to the nth degree. What it is doing to the person with dementia depends on the type of dementia and many different kinds and symptoms are discussed on TP. We look at others posts and think how much worse other people are finding their life and that helps to keep us going. In truth if you are the person doing the caring then your problem is your problem whatever anyone else is going through.

@Amber17 you are a young mother which is to me the most important job you will ever do. Your own mother obviously did a good job when you care so much about her. All of this will push you to your limits so you have to plan now how to get all the help you can. This might mean personal care help in getting her washed, dressed and fed or day care centres which will keep her entertained. Make enquiries about how you can get this started. The earlier the better. Please make sure you have Power of Attorney in place for Finance and Health and Welfare either through a solicitor or by downloading the forms and doing it yourself which is much cheaper. Register immediately whichever you do.

Ask on here if there is a specific problem you are dealing with or if you just need to vent your feelings. Best regards.
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
Hi maryjoan,

I work from home too and I think that is the key - find something that you can do working from home. The motivation is the difficult part, I thought it was because I was "gender challenged" that meant I couldn't multi-task ;-) but maybe you're right, the constant being called away for this, that and the other does distract and make motivation hard. It is worth doing though because it means that you can interact with others and have sane conversations even if it is by telephone, and for that brief moment, you're not a prisoner.

As a younger person (I'm 52, my wife with Alz is 66), I also find that the whole 'state help' is geared towards the expectation that everyone with dementia is retired and on a pension - well that's what it felt like. After I gave up work 4 years ago, there was no way with the CA, PIP etc that I could pay the bills so I set up my own little company. I do websites and membership systems for enthusiasts clubs. I can easily work 40 hours a week at this. Productivity is low (so is the pay, but that's not the point, do it for sanity) because of the call aways and motivational issues, but a few hours here and there, plus she goes to bed early then I get the evening too and it soon mounts up over 7 days. Once you do that ...... you get Working Tax Credit !! Yay - then I could pay the bills!
Good on you @Brian_P6 - it is all about mental attitude I think. I keep giving myself a shake, but it has taken me 3 years to almost get my head around the situation here. My OH moved in with me from the Midlands to 'help' me with my business - and he did - until this awful illness came along and practically ruined my business.
At least working from home, we don't have business rent/wages etc to pay and overheads are less......
You are right though - everyone thinks dementia is for old people - and it isn't and it is not 'just forgetfulness, yesterday for me, it also meant my computer glasses were broken !!!
Good Luck
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
I just want to say to all those caring and juggling life and everyone’s post has made me cry and think I’m not the only one going through all that. It helps me understand my situation in some ways are better and some worst but still I’m standing.
I’m approaching my 40 soon and I’ve been caring for my mother for the last 20 years in her own home but since last two years she had a stroke and has had dementia she’s had to move in with me due to needing full time care. I work part time, Have young children to look after too. Husband isn’t in the best of health either and he needs care too. Life isn’t the same anymore I can’t switch off both physically and mentally exhausted.
Work is break for me otherwise I’d have a complete breakdown, my colleagues are in their 60’s and fully understand the pressure of caring for someone with dementia how mentally challenging it can be. Sometimes I wish I could be left on a island with no worries, I don’t know what the future holds but one peace of mind I have is my mother is with me no matter how hard it is.
I often think I will run away to a remote Scottish Island!
 

Juba

Registered User
Jul 27, 2019
33
I found I could no longer work at the start of this year when my OH really needed me around. My job really needed me to be able to travel which meant very long days as some places were a 5 - 6 hour round trip. I'm lucky in that I've been able to take paid sick leave - full pay for 6 months and half pay for 6 months. That's coming to an end in the New Year. I'm afraid I'm being pretty ruthless and not resigning/retiring as I'm still only 57. To date, work have been very supportive so I know I'm lucky......(in that way at least)
I know I'll have to take retirement soon and early retirement will be a hit and it scares me silly losing what was a really good well-paid job. I honestly don't know how people get by with no steady source of income. It really disgusts me what people have to give up for measly payments/entitlements. Add to this the disgrace that despite being told my OH should be getting daily care paid for that doesn't happen because there is no capacity to deliver services in our area - we live 4 miles from a city centre....
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
I found I could no longer work at the start of this year when my OH really needed me around. My job really needed me to be able to travel which meant very long days as some places were a 5 - 6 hour round trip. I'm lucky in that I've been able to take paid sick leave - full pay for 6 months and half pay for 6 months. That's coming to an end in the New Year. I'm afraid I'm being pretty ruthless and not resigning/retiring as I'm still only 57. To date, work have been very supportive so I know I'm lucky......(in that way at least)
I know I'll have to take retirement soon and early retirement will be a hit and it scares me silly losing what was a really good well-paid job. I honestly don't know how people get by with no steady source of income. It really disgusts me what people have to give up for measly payments/entitlements. Add to this the disgrace that despite being told my OH should be getting daily care paid for that doesn't happen because there is no capacity to deliver services in our area - we live 4 miles from a city centre....
The lack of qualified care staff is a huge problem
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
The lack of qualified care staff is a huge problem
Re Care Agency Staff - my OH has a stoma that he cannot manage because of his dementia.

We live in a remote area, and care staff have to travel quite a distance to see him yet......

I have had one agency send staff out to 'peg feed' him !!!!!!! He is NOT peg fed - he has a stoma
I have had one send an untrained member of staff, in the hope I would train them ! I suggested I invoice them for my time
I had our present agency only last week, arrange with a professional stoma nurse for a staff training session at our house - sounds good. The agency arranged this and the time - yet their trainee turned up 40 mins late, keeping the nurse waiting because the agency had given her a different time....

Yes, good, qualified help is really hard to find
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Re Care Agency Staff - my OH has a stoma that he cannot manage because of his dementia.

We live in a remote area, and care staff have to travel quite a distance to see him yet......

I have had one agency send staff out to 'peg feed' him !!!!!!! He is NOT peg fed - he has a stoma
I have had one send an untrained member of staff, in the hope I would train them ! I suggested I invoice them for my time
I had our present agency only last week, arrange with a professional stoma nurse for a staff training session at our house - sounds good. The agency arranged this and the time - yet their trainee turned up 40 mins late, keeping the nurse waiting because the agency had given her a different time....

Yes, good, qualified help is really hard to find
it sounds very stressful, trying to liaise everything is never easy. Amazing how people don’t appreciate rural distances, compared to motorway miles.
 

White Rose

Registered User
Nov 4, 2018
679
This is an illness like no other. It tests the carers mental and physical strength, emotional endurance, and temperament to the nth degree. What it is doing to the person with dementia depends on the type of dementia and many different kinds and symptoms are discussed on TP. We look at others posts and think how much worse other people are finding their life and that helps to keep us going. In truth if you are the person doing the caring then your problem is your problem whatever anyone else is going through.

@Amber17 you are a young mother which is to me the most important job you will ever do. Your own mother obviously did a good job when you care so much about her. All of this will push you to your limits so you have to plan now how to get all the help you can. This might mean personal care help in getting her washed, dressed and fed or day care centres which will keep her entertained. Make enquiries about how you can get this started. The earlier the better. Please make sure you have Power of Attorney in place for Finance and Health and Welfare either through a solicitor or by downloading the forms and doing it yourself which is much cheaper. Register immediately whichever you do.

Ask on here if there is a specific problem you are dealing with or if you just need to vent your feelings. Best regards.
This is excellent advice Marionq - POA is essential, it has been invaluable to me dealing with my partner's financial affairs and health, particularly as we're not married. Getting help as well, absolutely vital to have some time off and try to maintain some sort of 'normal' life.
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
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?
Hi Maryjoan. This is an interesting subject for me as I’m now struggling with my four days a week job. This week has been bad as I’ve not been able to go in except for short spells (fortunately only 20 mins drive). It’s causing problems ( as if there aren’t enough already). We have carer in morning after I have left and sometimes for lunch so I don’t have to pop back but it’s going to have to be more than that now as I cannot afford to give up work. From a sanity point of view but also financially as i have no pension to speak of. I can do a bit of work from home but not for whole days - the role doesn’t fit the work from home pattern. Also it wouldn’t be tolerated and I won’t get another job at my age. But the situation here has gone from bad to worse and we are getting to the point where OH cannot be left alone. He has fallen twice in past week and that is a new development. His mental distress is now seriously bad and it is heartbreaking to see. I know things can’t go on like this for much longer but some decisions are so hard to make.
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
Hi Maryjoan. This is an interesting subject for me as I’m now struggling with my four days a week job. This week has been bad as I’ve not been able to go in except for short spells (fortunately only 20 mins drive). It’s causing problems ( as if there aren’t enough already). We have carer in morning after I have left and sometimes for lunch so I don’t have to pop back but it’s going to have to be more than that now as I cannot afford to give up work. From a sanity point of view but also financially as i have no pension to speak of. I can do a bit of work from home but not for whole days - the role doesn’t fit the work from home pattern. Also it wouldn’t be tolerated and I won’t get another job at my age. But the situation here has gone from bad to worse and we are getting to the point where OH cannot be left alone. He has fallen twice in past week and that is a new development. His mental distress is now seriously bad and it is heartbreaking to see. I know things can’t go on like this for much longer but some decisions are so hard to make.
I don't know your age, but I am self employed as a genealogist. Maybe you could do something from home that is essentially self employed ??
My OH has taken two falls in the last week - unexplained, when out of the house, so the Dr raised the question of whether he should go out alone at all.....we live in a lovely caring village, so are fortunate that he is relatively safe.
Our work is often our identity, and whilst our PWD loses their identity, we also start to lose ours - it takes an awful lot of effort to keep all these plates spinning....
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
I don't know your age, but I am self employed as a genealogist. Maybe you could do something from home that is essentially self employed ??
My OH has taken two falls in the last week - unexplained, when out of the house, so the Dr raised the question of whether he should go out alone at all.....we live in a lovely caring village, so are fortunate that he is relatively safe.
Our work is often our identity, and whilst our PWD loses their identity, we also start to lose ours - it takes an awful lot of effort to keep all these plates spinning....
It’s great that you live in a caring village. Fortunately so too do I but my husband doesn’t ever go out on his own now. I can’t imagine him on the pot holed road being safe. But he also has no desire to go anywhere unless someone is taking him by car. I don’t know about you but while living in a village is lovely on the one hand it does mean that useful facilities are quite a long way away as dementia help seems to be concentrated in cities and large towns.

Going back to the work situation, I am 66 and work as an administrator in a small firm. I have been there a long time. Its difficult to do much from home as sadly the directors have not embraced modern working practices and don’t understand that certain things can easily be done from home and can even sometimes better be done from home. If I had a pension as back up i would feel more relaxed but with nothing other than a state pension I need that job to keep a reasonable standard of living. I am very fearful of poverty! The job, while it’s hardly the most exciting in the world, also gives me respite. The thought of being cooped up here all day (without being able to afford a carer for my very uncooperative PWD ) frightens me too!

The solution may be forced on me soon. It’s 3am and he has woken me up with his terrifying ranting which I am trying to ignore. I don’t think he will come upstairs where I sleep as he doesn’t like stairs. Without that safety barrier I don’t think I would be safe being alone in the house with him at night.
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
It’s great that you live in a caring village. Fortunately so too do I but my husband doesn’t ever go out on his own now. I can’t imagine him on the pot holed road being safe. But he also has no desire to go anywhere unless someone is taking him by car. I don’t know about you but while living in a village is lovely on the one hand it does mean that useful facilities are quite a long way away as dementia help seems to be concentrated in cities and large towns.

Going back to the work situation, I am 66 and work as an administrator in a small firm. I have been there a long time. Its difficult to do much from home as sadly the directors have not embraced modern working practices and don’t understand that certain things can easily be done from home and can even sometimes better be done from home. If I had a pension as back up i would feel more relaxed but with nothing other than a state pension I need that job to keep a reasonable standard of living. I am very fearful of poverty! The job, while it’s hardly the most exciting in the world, also gives me respite. The thought of being cooped up here all day (without being able to afford a carer for my very uncooperative PWD ) frightens me too!

The solution may be forced on me soon. It’s 3am and he has woken me up with his terrifying ranting which I am trying to ignore. I don’t think he will come upstairs where I sleep as he doesn’t like stairs. Without that safety barrier I don’t think I would be safe being alone in the house with him at night.
As others have said on here in similar situations - you need to feel safe in your own home - just in case he does climb the stairs - have a plan 'b' - ie a room you can lock yourself into and a phone with you at all times - and do not be afraid of phoning the police if necessary.

Have you had a carers assessment? Are you on social services radar? Has your OH got an up to date Care Plan?

We do not get dementia help as such -but we do have access to carers via an agency, and this is paid for by social services as we do not own our own house and cannot self fund. The carers can be a boon, and if you have a care plan, will do what is needed within that plan.

Also bear in mind there is a stage when it is not about what your OH will accept, or refuse - it is about what you say is happening.

I have to work, as I only have state pension, and I am 70, but you are allowed to refuse to look after your OH if it comes to that.

Are you getting all the benefits you are entitled to - Attendance Allowance, reduced Council Tax etc etc

We have no car any more and I am as you say 'cooped up here' 24/7, it is very hard. I am going to Scotland tomorrow, to visit my baby grandson, OH's daughter is meant to be coming down to look after him - but despite attempts to contact her this week, she is not responding.......tricky - we will see what happens.

Good Luck
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
As others have said on here in similar situations - you need to feel safe in your own home - just in case he does climb the stairs - have a plan 'b' - ie a room you can lock yourself into and a phone with you at all times - and do not be afraid of phoning the police if necessary.

Have you had a carers assessment? Are you on social services radar? Has your OH got an up to date Care Plan?

We do not get dementia help as such -but we do have access to carers via an agency, and this is paid for by social services as we do not own our own house and cannot self fund. The carers can be a boon, and if you have a care plan, will do what is needed within that plan.

Also bear in mind there is a stage when it is not about what your OH will accept, or refuse - it is about what you say is happening.

I have to work, as I only have state pension, and I am 70, but you are allowed to refuse to look after your OH if it comes to that.

Are you getting all the benefits you are entitled to - Attendance Allowance, reduced Council Tax etc etc

We have no car any more and I am as you say 'cooped up here' 24/7, it is very hard. I am going to Scotland tomorrow, to visit my baby grandson, OH's daughter is meant to be coming down to look after him - but despite attempts to contact her this week, she is not responding.......tricky - we will see what happens.

Good Luck
Thanks. Maryjoan. Enjoy your time away. Indeed hope you get away.
 

CWR

Registered User
Mar 17, 2019
199
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 work but only part-time. They had a restructure and wanted me to work in a nearby town and since I have no car I had to turn this down, losing over £100 a month but what can you do? I do find the juggling difficult even working part-time. At times I have to take personal days, but this reduces my annual leave, which I like to leave for when mum is in respite, so a lot of juggling involved.
 

Emac

Registered User
Mar 2, 2013
186
oh bless you, I’m a total mess at the moment - other life issues have popped up & I’d normally cope but as the saying goes it’s a bit like the straw that broke the camels back!!

a good night sleep- only woke at 2 am !

Totally agree with you that a Care home at some point might be the only option for
Mum. She recently went into a respite care situation Mum wanted to visit Dad & I couldn’t manage her needs in our house - stairs etc. Mums type of dementia means she can come across as high functioning, but is a high falls risk, gets exhausted by the simplest of daily life- ie getting out of bed & becomes extremely confused with exhaustion. So a Care home meant she was well looked after but above the other residents intellectually. Now she’s on memantine her behaviour issues have been resolved to a certain degree that’s now manageable. Mum has carers in 4 times a day & I actually no longer have the worries I had about all aspects of her care. The GP is going to be a pain, but I can get another GP out if required - the reception staff are excellent & aware of the issues. It does help growing up & knowing a lot of them!

As Dads at the end of his life now all I can do is be around for him & provide the comfort of being held. How long it takes the body in this final stage is totally unknown - how long is a piece of string. Dad becomes easily dehydrated & his lower lip swells regularly. The care home are giving him protein drinks, bit like shutting the stable door after the horse has bolted as Dad has lost 6 kg in a month.

So Dads lovely new GP has put him on stronger morphine patches & the liquid oromorph to back it up.

Getting the home to admit what the medical professionals have stated is no longer my concern - an Enquiry by safeguarding is underway. The lovely SW doing this has found Dad as we describe, so I’m no longer fighting the system alone I’m actually standing with others with Dads best interests at heart.

It’s always good to have a balanced view & I appreciate those that give that; it’s not an easy position or popular at times & certainly brings out the defensive in those the advice is meant to help. ( Hands up - that’s me!!) But I totally appreciate your input- you say the same as my own husband & children, & others. This is a no win situation though & I have to be able to live with myself afterwards ... I’m adopted you see & 18 months ago my biological mum passed away. We had known each other for over 20 years but her own family were not as welcoming shall we say - in particular her husband was off at times. So I found myself cut from that family support & grieving on my own. I don’t want to have the regrets I had with my beloved biological Mum so I guess I’m overcompensating!

I’m going to go on a bike ride with my husband today ! Actually it’s going to be a lot shorter than he expects - I haven’t ridden a bike since I backpacked our hefty fell terrier after she decided that she’d had enough ! That’s over 10 years ago!!

so thank you for playing devils advocate - it’s a necessary role but not always a popular one
(((((Hugs)))))))
 

Emac

Registered User
Mar 2, 2013
186
You sound like an amazing woman and an exceptional daughter! You also must be highly resilient and resourceful to keep on problem solving and moving forward in a system that seems determined to give us as little support as humanly possible. It sounds to me like you have done a great job and are coping well in very difficult circumstances. Just keep on doing what you are doing honey and remember not to exhaust yourself beyond what is possible. Sending love and a big hug xx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Today I attended my local monthly market to sell my art & craft! my one morning a month escape had the dreaded mobile phone call ....so trying to sort out Mums shopping & sell art 100 miles apart isn’t a good combination!

But I survived & my nerves shredded, I am now trying to restock & prep for a mid week event!

I’m going to be very busy until Christmas!
I’ve spent all year sorting out both PWD if I don’t sell I don’t have an income!
So who needs sleep? Well as I’m used to being part of the wide awake club at silly o’clock I might as well be productive ....


I’m afraid I’m going to be selfish & put my work first for a few weeks - after all by the middle of December it’s all over bar the the wrapping! I can sleep then!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
You sound like an amazing woman and an exceptional daughter! You also must be highly resilient and resourceful to keep on problem solving and moving forward in a system that seems determined to give us as little support as humanly possible. It sounds to me like you have done a great job and are coping well in very difficult circumstances. Just keep on doing what you are doing honey and remember not to exhaust yourself beyond what is possible. Sending love and a big hug xx

Oh bless you, to be honest I blunder my way through life, apologising a lot for standing on toes, & just laughing at myself a lot! I think I’m just like” Dory “in “Finding Nemo “( a story about fish! It’s a Pixar film!)
“Just keep swimming “ a little ditty that Dory’s character sings ... how apt for a fish!
 

TNJJ

Registered User
May 7, 2019
1,727
cornwall
Today I attended my local monthly market to sell my art & craft! my one morning a month escape had the dreaded mobile phone call ....so trying to sort out Mums shopping & sell art 100 miles apart isn’t a good combination!

But I survived & my nerves shredded, I am now trying to restock & prep for a mid week event!

I’m going to be very busy until Christmas!
I’ve spent all year sorting out both PWD if I don’t sell I don’t have an income!
So who needs sleep? Well as I’m used to being part of the wide awake club at silly o’clock I might as well be productive ....


I’m afraid I’m going to be selfish & put my work first for a few weeks - after all by the middle of December it’s all over bar the the wrapping! I can sleep then!
You should do an ebay shop.Im not up your way but I do love Arts and Crafts
 

Ruth1974

Registered User
Dec 26, 2018
108
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?
You should do an ebay shop.Im not up your way but I do love Arts and Crafts