Being a carer and working full time.

[twinklestar]

I feel sure there must be many of you out there who wonder how we all cope being carers and working full time.

Firstly, may I say that I love my job. That has not always been the case. Not because of the job but because of my boss. Fortunately, I am now extremely lucky as I have a good boss who is extremely understanding if, for instance, I have to take time off at short notice.

I try to make sure I do my work well so my boss will not have cause for concern and I have to say I am good at my job.

How do you deal with the feelings of guilt at leaving mum everyday?

How do you deal with sorting things out for the person you care for? Sometimes there is an issue to resolve or something to sort and you have to make a call or send an e-mail during my working day. I will not rest until I have solved it. What I wish I could do is compartmentalise things and set aside a specifc time to do this sort of things but I cannot seem to do it. How do you all manage?

 

[clareglen]

I gave up work & now I'm skint & now mum is in hospital my carers allowance has stopped. I will have to get a job again once I get her settled in a home. I've been full time carer, as in no proper job, for over 2 years as it got to a point where I was coming home after a long day at work to all sorts.

 

[Delphie]

I'm self employed so my situation is slightly different but I just wanted to say that I never managed to compartmentalise the care and support I was giving to my mum before she went into residential care. My business was massively affected by this and without my husband's support (financial and otherwise) I would have gone under.

I'm sure it can be done, just not by me!

 

[leicester61]

I feel sure there must be many of you out there who wonder how we all cope being carers and working full time.

Firstly, may I say that I love my job. That has not always been the case. Not because of the job but because of my boss. Fortunately, I am now extremely lucky as I have a good boss who is extremely understanding if, for instance, I have to take time off at short notice.

I try to make sure I do my work well so my boss will not have cause for concern and I have to say I am good at my job.

How do you deal with the feelings of guilt at leaving mum every

How do you deal with sorting things out for the person you care for? Sometimes there is an issue to resolve or something to sort and you have to make a call or send an e-mail during my working day. I will not rest until I have solved it. What I wish I could do is compartmentalise things and set aside a specifc time to do this sort of things but I cannot seem to do it. How do you all manage?

Hi Twinklestar
Once my hubby had to reduce his hrs to part time I felt I had to do that too, I know I could not cope working full time and be his carer, financially it has been a massive hit but recieving PIP has helped enormously. Sometimes I take a couple of hrs for myself when he is at home but mostly dont enjoy it as worried all the time at what he is up to, bit of a double edge sword that one. I think the way im coping is by taking each day one at a time plus i have started seeing a councellor who allows me to vent, cry, shout about all manner of things, usually the injustice of having such a young partner with this awful condition, but it does help. Wish I could give you a complete and workable answer, instead i send my love and hugs
suz x

 

[Annebags]

Hi Twinklestar,

Until two weeks ago I was combining caring for my mum with full-time work. To be honest, it became almost impossible. One week the careworkers contacted me to come home every day!

I survived by outsourcing as much of the practical stuff as possible - cleaner, supermarket delivery, gardener, Age Concern dementia sitting service, plus 4 careworker visits a day. Oh, and making lots of lists. I also put a meeting with myself in my work diary once a week for mum admin. I worked from home one day a week and took conference calls outside the hospital on numerous occasions.

Frankly, it was exhausting. Others would go out on Friday nights but I needed to leave early to sort out mum and her bath, dinner etc. Other people recovered from their week at the weekend. I recovered from my weekend with mum during the week! Until last week, I had not slept at my own house at the weekend for 5 years ....

In short, I think you can do it in the early stages but as dementia increases, it is more and more difficult. Good luck, Anne

 

[Pickles53]

Until two weeks ago I was combining caring for my mum with full-time work. To be honest, it became almost impossible. One week the careworkers contacted me to come home every day!

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Admittedly I haven't been in this situation, but what is the point of Care workers who can't cope with the job you're paying them for and keep calling you at work? Or did you ask them to contact you with any problems?

 

[Annebags]

I agree but care workers won't pick up anyone who has fallen. They also rang to tell me that mum had put herself to bed during the day so by the time they got her up, it was too late to heat meal and check that she ate something. Each care visit was only 20 mins.

 

[chick1962]

I had to give up my job as a retail manager and miss it terribly not just the financial aspect but being amongst ppl and the challenging aspect of using my brain . Oh had problems with gas and the electric kettle and leaving taps on so had no alternative but to leave my job! Even though he's at early stage still ! We do get disability payment and a small private pension but it's quite hard to make ends meet but we do manage


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[Vesnina2]

It has been 2 years now since true problems started.
However, it must be that some years before we already had milder problems,
time consuming and making my nights short and sliced into many parts
- due to some other health problems.

Mother recovered beautifully during my summer holidays last year,
and again this year we spent summer together...

It took me one whole month of summer holidays this year to recover more or less,
and only near the end I understood that actually years had passed
without my true rest, or full life. I never sleep enough... leave aside other activities.
It took me another month to get used to my discovery,
that I was missing so much in my life that...

I have no words for all this again,

and I do not like me finding words,
as I enjoy being with mother, hugging her, encouraging her,
giving her whatever she needs.
I enjoy also in my work - although I am late in many activities I used to do and I still wish to do.


A friend told me about her mother,
and the care they shared among sisters - for a month each of them.
"Let us see how long you can withstand."
Until I die? - I thought. I never looked for other solution.
I pay for a carer to come while I am away,
but have little luck with finding the right person
- in best case they manage to give her some drink.

After one month with other person during her days
(I dress her in the morning, give her medecines, breakfast... dinner in the evening etc),
she is much weaker again... much much weaker.

My close ones make me think on carehomes,
my backpain sometimes seem to decide instead of me,
but I am still happy to wake up if mother coughs in the night, I try to help her, kiss her forehead...
to change her pants if occasionally something unexpectedly starts smelling in the night...
and think how uncomfortable it would be for her to be alone in the night.

 

[Beate]

I managed for 3 1/2 years, and I couldn't have done it without the daily Day Centre and sitting service. There was a lot of juggling that needed to be done and when it transpired that OH could not be left on his own at all anymore, I had to reduce my hours slightly so I would be at home when he arrived home from the Day Centre. My office knew about his diagnosis and had tolerated emails and phone calls being made when need be, though I was asked not to make calls from my desk. They agreed to my reduced hours only too willingly as it meant I did the same job for less money (though I didn't mind as it gave me more freedom) but then a few months ago they dropped a bombshell on me and asked me to go fulltime again and do some other people's work as well. I couldn't and wouldn't do that so gave up my job with a package.
Now I don't have to take off half days anymore just to accompany him to an appointment and have much more freedom, albeit less money. It hasn't reduced all the stress as the organising and chasing people never stops but unless your employer is100% behind you in this, what can you do?

 

[Pickles53]

I agree but care workers won't pick up anyone who has fallen. They also rang to tell me that mum had put herself to bed during the day so by the time they got her up, it was too late to heat meal and check that she ate something. Each care visit was only 20 mins.

That makes a bit more sense especially with a fall but surely it wouldn't be safe for you to pick her up either? When the carer came in for a morning visit and found mum had fallen she called an ambulance which seemed the right decision to me. Of course they would still have to phone and tell you.

I think you highlight exactly the problem with care visits, the care workers have to be off to the next call on time so if something unexpected happens they're not able to fit everything in.

 

[Liz57]

Financially, I have no choice but to work as I'm a widow with a mortgage. I worked a full time job and part time (home based) job for several years but as mum deteriorated last year, came close to a breakdown. Last August I was made redundant from my full time job and took a second part time job so now have a little more time and have worked out that the redundancy payment plus the two jobs gives me about 18 months before I have to consider selling the house. Mums 87 so 2 years is a very long time.

I have no support and no care visits (mums refused them) but have this week finally managed to get at least a support worker for me to contact. Just having someone else to talk to has helped hugely. I spend an hour in the morning with mum and an hour or so in the evening with her. I call her at lunchtime too and have been trying to arrange some kind or day care or befriending service as she's on her own at other times.

The pressures of care are more than those who don't can possibly understand.