Just wondering who manages to work plus care and how many hours/work pattern?

[Selinacroft]

I would say Dad has Vascular Dementia rather than AZ and is still continent, but shuffles around rather precariously and very slowly so doesn't actualy do anything between to and fro to the commode, bathrooma nd lap of the house on good days.
I do everything but have some care help for half an hour every morning.
I work myself (yes more care work so busmans holiday) and although I only do a couple of hours (equals 3 to 3.5 hrs away from home most days) it feels like I never stop and wondering if I would be better cutting my hours. It's a nonsense anyway financially as only earn what I pay out.
Finally getting to the reason of this post- do other people who care for a person with dementia full time manage to work (yes I know that'sa bit of a contradiction) If so how many hours do you manage in a typical week and what kind of shift pattern works for you? If you abandoned working all together what stage was your PWD at and what tipped the balance?

 

[WORRIER123]

Hi there
I work full time and have no family.
Dad has vascular dementia moderate to severe and lives with me.
I leave the house at 6am and get home 6pm Dad has 4 care visits a day 7 days a week. Without the care I couldn't work and work for me strangely is a break. The minute I leave the house I sigh relief.
I am constantly tired though and have no social life but as I don't have any other family I have to get on with it
Yawning away now

 

[fizzie]

I worked part time (3 days) and had two young teens, mum went to a lunch club on the days that I worked so I had a carer come in and be with her til transport came and then I came home about an hour after she came back. Financially it made sense for me to work and I too found it a relief but I wouldn't have continued to do it if it hadn't made it worthwhile financially because it was a killer. I'm just wondering if you gave up work but had dad go to a day centre at least once a week but possibly twice (social services assessment perhaps) then you would have some time to yourself - looking back I don't know how I did it and would always advise to have some 'me' time if possible because the strain is horrendous. xxxxx

 

[Linbrusco]

My husband has a health condition, so have worked part time for a number of years.
Up until 2012 I was working 4 days a week 8am to 2.30pm as I had two children at school also.
Between Mum already being diagnosed with Chronic Lymphocytic Leukemia in 2011, and then early stage bowel cancer 2012, and then Alzheimers in 2013, I changed my days to 3 days a week 8-4pm.

Despite Mum living with Dad, and them living behind us, I was otherwise Mums main carer.
Mum attended an Alz Group , Mon & Tues mornings. Monday being my day off. Tuesday Dad would go to his club, and my DH would keep any eye on Mum at home till dad got home an hour or so later.
Wednesday my day off, I would take Mum shopping.
Thursday morning Mum attended a Senior Citizens group. Friday she was with dad.

I was lucky with DH at home, he could txt/phne me at work if any problems.

This worked reasonably well until January this year, when Mum started getting frequent UTi's and a considerable decline with each one. I used to say going to work was my respite.
It got to the point though when at work I would be txtd by DH to come home... Mum would go wandering ( or try to), or Dad would leave Mum alone to nip to the shops, and not tell DH, or Dad would expect Mum to remember where he had gone, and Mum would come and see my husband to say she couldn't find Dad.... so many dramas!

I then changed Mum to a daycare 3 days a week 8am to 3pm... that didn't work well either. The van wouldn't turn up on time to pick Mum up, or she would be dropped off late, or she would get ready on the two days she didn't attend, and get stroppy when you told her it wasn't on.

For various other reasons Mum went into care in July.

The week Mum went into care and the first day at work, I went a whole day without calls, txts, messages from home & DH, Hospital Needs Assesors, GP, and Alzheimers Society was such a relief.

 

[CollegeGirl]

I have no idea how you all manage this. I have no idea how my dad manages, and he's retired.

I'm full of admiration for you all, and shame in the knowledge that I couldn't do it

I sincerely hope that you all get at least some time for yourselves, but I know that many of you probably don't.

xx

 

[Peirre]

A typical day....every day
After initial diagnosis I did all the stuff your supposed to do regarding setting up legal and financial aspects of their life, & I managed to maintain a full time career of up to 15hrs a day 5-6 days a week running my own business. But as the journey progressed the needs of the PWD became more evident. Add in the traditional post Xmas lull in work in 2014 I found myself spending my time looking after them. However when worked picked up weeks later it was evident that the PWD was much more reliant on me, so despite having moved out into my own house months before, the toughest decision in my life was made to put my career on hold and concentrate on their care. So 7 days a week I'm up at around 05:30 to deal with aspects of my own life/home 10 mins away from the PWD so that I can get to their home for around 07:30-08:00. This enables me to get him up, showered, dressed, downstairs and have breakfast. Before stripping & remaking the bed (due to incontinence), laundry/ironing, clean the home, preparing lunch, shopping, followed by snacks late afternoon. Then on 2 days (fri/sat) I take him in the car to the local pub for 1hr (6-7pm) to socialise and have 1-2 pints, before going home to deal with the remains of my own housework. I average 10-12hrs a day, 7 days a week in their home.
The hours I'm not in attendance I have a sibling who live in the home with the PWD so they effectively do a night shift while I sleep. ATM @15:00 on a Saturday afternoon the PWD is eating lunch which may take them 1-3hrs due to random sleeping, my sibling is asleep in bed, and I expect to get home around 7:00-7:30pm, and IF I can summon enough energy tonight I may drag myself out to socialise with friends down the pub.
On Monday I'll take them to a nearby community hall to attend the monthly memory cafe, before heading off to the hospital to attend an appointment for myself, then return to ensure the PWD is settled for the night. Before going home.


TBH I don't know how someone who is the spouse of a PWD copes being in full time attendance, as my 70-80hrs a week pales into insignificance by comparison

 

[Beate]

When OH was diagnosed, I was working full-time. I kept that up for a couple of years. I couldn't have done it without huge support from SS in reform of a day centre and lots of sitting hours from Age UK. Support increased the more he needed constant supervision. Someone came each morning at 8am so I could head off to work and stayed until his transport bus to the day centre arrived. When he couldn't be left at all anymore, I reduced my hours slightly so I could be home in time for his return. On some days he was accompanied by a sitter who stayed till 6pm. The reduction in my hours worked out as little more than half a day a week and worked ok for about 8 months, then work started to tell me I had to go full-time again due to them being short-staffed which was no one's fault than their own really. I refused and we parted ways. To be honest, I was relieved. I was under so much stress trying to co ordinate his care while doing my job, constantly having to take time off due to appointments etc, and having to chase people during office hours. Now that I no longer work, I have no idea how I ever managed before! He still goes to the day centre but there is always so much to organise!

So, to stay in work you need a supportive employer, to give up work you need a nest egg. I had the latter but not the former.

 

[LynneMcV]

This time last year I was working 4 days per week. I managed this thanks to the flexibility of my employer allowing me to work from home - with the occasional day in the office when my son was around to keep an eye on his dad while I was out.

It all went a bit pear-shaped in the new year due to a sudden progression of the disease which led to my husband being in a secure unit for two months. It was evident to me that I would have to work fewer hours once he came home from hospital, as his needs were greater.

As it was, the decision was taken out of my hands. They started consulting on redundancies in my team. The team was to be re-shaped and only two full time roles were to be recruited for. Well that left me a bit stuffed because I needed fewer hours, not more.

The reshaping of the team is still continuing and I have been working three days per week since May while the consultation continues. It is manageable, again only because I can do most of it from home. My husband attends a day centre 1 day per week and I usually manage to get in the office that day.

Working from home is becoming more difficult though. My husband no longer recognises the fact that I am working and often interrupts me when I am on the phone. On one occasion he became paranoid about the laptop I was using just as my boss had messaged me for some important info he needed for a meeting he was about to go into. It was touch and go on that one but I succeeded by the skin of my teeth!

Knowing that it is inevitable that I will eventually have to stop working altogether, I have now asked to drop down to one day per week as part of a job share (to fill one of the full-time posts alongside someone who wants to work four days). The idea seems acceptable to them but interview processes are still going on and I will do the current 3 day week as long as I can or until they make a decision one way or the other.

I have to say that work has been extremely supportive and flexible since my husband's diagnosis in 2012 and it is purely down to their understanding that I have been able to continue working in one way or another despite caring for my husband 24/7.

 

[Marnie63]

I was working full time throughout the time I moved mum in with me and for 5 years after, but this was all pre dementia. She was in her 80s but could no longer manage to live and cope alone. Then I decided to give up full time work (I luckily left via voluntary redundancy), took a year out then found a nice little part time job locally. This really suited me as I had more time to myself, more time to take mum out somewhere, but also an income. This carried on for around three years until mum suddenly declined into dementia (I'm convinced she had a stroke). I regrettably had to give up the part time job as mum was in and out of hospital and life just revolved around visits, making sure she was cared for properly, then the discharge, care package, etc. A year later the guy I had worked for part time called me to ask if I wanted to go back. Call me daft, but this happened the morning after a particularly bad day for me - and as soon as he said it, I took it as a lifeline from somewhere/someone? The timing was weird. So, after some mulling, I decided to return to the part time job. I decided to go back for a few reasons - to have something in my life for me (everything else revolved around mum, 24 hours), to have a bit more money coming in (£62.10 a week? what a joke) and obviously to get a break from caring. So far, it's working out OK. I only do 8 hours a week as have to have carers with mum when I'm away (she can't be left alone), but I so look forward to it. It is something normal, it's a bit of my old life back, I don't feel so 'poor' anymore, and I get to have normal conversations with people (apart from the carers) for a few hours a week. I guess I was lucky to get that phone call, and I'm not sure if the boss knows quite how he has helped me out (I think he might!). I certainly would not have had the time or energy to look for a new job. I just slipped back into the work I used to do, so it was ideal. Without carers supporting us, me going to work would not be possible. We do have an excellent care agency, so am blessed to have them in our lives too. Looking after mum is still hard, but going back to work definitely gave me a lift at a time I really needed one!

 

[mancmum]

I too gave up paid external work

I had intended to employ carers and go back to work after my Dad moved in following death of my mother, but despite contacting several agencies no one was available to do a full time slot. It became apparent that because I held his memories I would be the best care giver. Also because he was in the immediate throes of grief it was difficult for a non family member to help.

I had three kids at home and a full time. Fortunately they were teenagers and helped signficantly. Oh and a live in girl friend.

My husbands earnings allowed me to stop paid work ...especially as the government had said they would institute a cap on care fees. We knew that the income I had given up would in the future be replaced. But guess what. They had lied.

I sold everything that wasn't nailed down on ebay and got carer's allowance. Sometimes I flip stuff on ebay. I make things and one day I might sell my collection ..but not yet. I do the odd mystery shopping assignment and the money I make on those I use to buy things for me in charity shops.

I must confess to not taking care of my teeth. Not having a new pair of glasses and putting off seeking medical treatment that might require a prescription. I have always supported myself and had a paid job since I was 14. When the kids were little I had two part time jobs.

I would urge anyone to seek leave of absence for a period to sort stuff out before giving up a paid job.

 

[CynthsDaugh]

I work full time, and Mum goes to daycare at a care home while I am at work. I drop her off on the way in in the morning and pick her up on the way home. Luckily she really likes it there and has a couple of good friends. It is hard - I also feel that work gives me a bit of normal life, but it is a stressful busy job and I do feel like I never switch off. Since Mum had a heart attack and hospital stay a month ago she is needing a lot more help physically as well as due to her dementia, and I am struggling so contemplating her moving to the care home in the new year. I wish could keep her with me longer but not sure it is best for either of us.

 

[Selinacroft]

Thank you all for sharing your experiences so varied and personal. I'm still thinking of reviewing my working pattern or cutting back. The care agency that do half an hour for Dad have bumped up their prices , some carers are worth it for half an hour and some definitely are not. I am out for 3 hours (working for 2 hours and travel for 1 hour) giving what I hope is good quality care to others to reurn and find short cuts taken at home and bare essentials done in the 30 minute slot. I can earn about £19.00 in 2 hours (out for 3 hours) and paying out for half an hour of care costs me £14.50 so its all a bit of nonsense that I feel needs reviewing but not sure which direction to take. So to summarise I'm away from home for 3 hours to earn the princely sum of £5.50 towards total household income.
Some very valid reasons for keeping job going as many of you have illustrated but I don't think I'm getting the benefits or balance right at the moment-probably too busy to
re assess things and not seeing the wood for the trees etc.

 

[Beate]

Whatever you decide, it sounds like you might be eligible for Carers Allowance, which is payable if you care for 35 or more hours a week and earn less than £110 a week after tax. Dad should be on Attendance Allowance for this, which is not means-tested, so if he's not on it, get the claim in the post!

 

[Marnie63]

Yes, as Beate says, maybe you can combine working plus getting CA? (Or maybe you already do?). I intentionally proposed a certain number of hours to my boss so that I would still get the CA. The level of CA is pants, as we all know, but that plus my smallish salary are better than CA alone! I wish they would do away with the £110 rule. Caring is caring, whatever we earn. And I too hope your Dad gets full AA - I claimed the upper limit as soon as mum was up and about at night. It certainly helps as we share household costs between us.

If you feel you are too busy/stressed at work, maybe reducing hours and then also getting CA on top might be the way to go.

 

[Marnie63]

Presumably you have already tried to get some funding from SS to cover Dad's home care costs? It also sounds like you are paying for the care from your own pocket. It really should come from your Dad's funds. No point preserving his funds if that means they stay about the £23k level, meaning he doesn't qualify for funding. Sorry, don't know your financial situations.

 

[Selinacroft]

Yes thanks- already getting CA and AA. Dad pays for care not me, so £5.50 towards total household income not just mine.