Anyone work from home whilst caring for someone with dementia?

[mitz]

Hello,

I'd love to hear of any experiences of people working from home whilst at the same time caring from someone with dementia.

It seems like a good idea but I read all over that people with dementia require constant attention. So, is working from home really possible? with or without the help of carers coming in.

Thanks.

 

[Louise7]

I tried it as a trial run but found it very difficult. I have a job where I can work from home a few days a week using a laptop (and sometimes need to catch up with work at the weekend). Although I don't live with my Mum I thought it would be handy to be able to work from her home occasionally to keep her company or keep an eye on her at times when she isn't so well due to an infection etc (she has carers three times a day). The problem I found was that Mum wanted to be in the same room as me and wanted my attention all the time. I couldn't distract her with an activity or the radio/TV and she got quite annoyed when I wouldn't sit next to her so I ended up not being able to concentrate on what I was working on. I suppose it will depend on what type of work you are doing and the behaviour of the PWD but I don't think that it will be an easy thing to do.

 

[Kevinl]

I worked from home for about a year and the longer it went on the harder it got.
I could sit my wife down in front of the TV at first but then as she lost concentration she'd be constantly coming looking for me, eventually she had to be in the same room as me all the time which makes doing anything that requires any degree of concentration very difficult.
Work were quite good about it but somehow if anything came in late or on a Friday I seemed to be the one that got the job, like working from home means you're always available evenings and weekends.
Some jobs lend themselves more to working from home more than others, I was designing food packaging so doing everything by e-mail wasn't a problem and I had someone in the office who'd attend client meetings for me.
The main problem is I found it very isolating, I could go for days and never speak to anyone but my wife, we never had the time to join in on things during the day, she wouldn't go to day care without me so it ended up being quite stressful.
K

 

[LynneMcV]

It's feasible but not necessarily sustainable. A lot depends on the type of work as well as how supportive an employer you have (if not self-employed).

From my own perspective I have a fantastically supportive employer and team behind me and if it wasn't for them I would probably have had to stop working a good couple of years ago.

As has been said, the problems come as the dementia and associated needs increase. In the early days my husband could occupy himself quite well and take care of his personal needs. He could even make himself a cuppa and something to eat if he wanted.

However, we are now five years into diagnosis and my husband is reliant on me for just about everything. I currently work three to four days per week. However, I am allowed to fit my hours in on weekends and evenings if I need to (great on days when hubby is ill, has appointments, attends memory groups or is greatly agitated to the point where it is impossible to work).

Some things have had to go such as live web meetings - I wasn't going to risk my husband's privacy being invaded or for my meetings to be inadvertently 'video bombed' by a wandering husband (I love my husband dearly but he isn't as cute as the two tots who recently gate-crashed their dad's live BBC interview from home and immediately became an internet sensation!)

Live web meetings aside, we still manage to get by with telephone conferences, instant message, email and social media.

But even with all the flexibility I am given, this past year has still been a struggle as a worker/carer - not least due to the lack of sleep I get now that my husband has regular restless nights.

Fortunately, the decision to give up/reduce working hours was taken out of my hands. Redundancies had to be made and, again thanks to my employer's tremendous support, I am about to embark on a job share of my post. I will work one day per week and my colleague will take the remaining hours - keeping us both in work.

It's the best outcome I could hope for. I keep my foot in the door, am able to keep my work skills up to date and will have the choice of working from home or working at the office (on a day when my husband is at his day centre).

Dreading the drop in income but I think we'll manage - the most important thing is that I'll be away from the stress of constant juggling, and hopefully will be able to enjoy more days out with my husband, from which we'll both benefit.

 

[mitz]

If I choose to do that there are a couple of possibilities but yes, considering that the person with dementia could be having a bad day and really needed attention, work would have to be put aside. So perhaps it could work if thought of as an income supplement but not as a living.

Thank you.

 

[irismary]

I work from home - my hours vary week to week - and so far not too bad, however it is getting harder as his attention span is so short. Sometimes he will settle and watch tv or flick through his books (he can't really read now) but increasingly he comes looking for me. He sits with me for a while then mooches off and starts "messing" with things which is very distracting so I can only really do straightforward work whilst he's around and do the majority when he is at day care which is a bit frustrating but don't want to give up work - its my income and it does give me something to use my brain and keep in touch with colleagues I have known for years albeit by email with occasional popping in the office for catch up meetings. I fear my job won't last much longer and I would not look for another job.

 

[Spamar]

I worked for myself, which involved going out, doing things, coming home and writing it up. This was in the early days of OHs dementia. I was stuck in the study, loads of papers, computer, back reports etc. He would wander up and ask if I was OK. Did I want a coffee? But every 10 mins! It eventually became impossible and it coincided with him not being able to be left alone at all.
Work had to go.

 

[Witzend]

I was working from home while my FiL was living with us - or trying to.

I would think it will depend very much on the individual, but I could do very little with FiL until he was in bed, since he was endlessly pacing and asking the same questions over and over. (I once counted 35 times in one hour).

He would go to be at ten, and then I'd often be working till 2 or 3, but of course this just wasn't sustainable. He was up and down a lot in the night, too, waking us all up, and this was just one of the reasons he finally went into a care home.

I never had carers in, but I suppose it might have been possible to get more done if I'd been able to work upstairs, with them downstairs. However he was not at all 'easy' - was apt to fly into truly terrible rages at the tiniest thing, so I'm not sure any carers would have lasted long anyway.

 

[DaveM]

I left my job when my Mother needed full time care during her chemo and cancer surgeries. I thought it would be for a year or less, and I had been thinking about switching jobs, so I didn't sweat it too much. Three and a half years later, I needed to do something.

I have some engineering and technical background. I also have quite a bit of C.A.D. knowledge. I decided right away that doing the design or even the drafting end of any kind of major project was not going to work. There were too many interruptions and a moment of cognitive flatulence could result in an undetected mistake that could cause production problems, maintenance issues or an unthinkable safety issue down the road. Even a small detail can be disaster if it is missed.

I ended up doing the drawings and design for some hobby and small specialty items. I make tooling patterns for molded items, and plans for simpler items. The items are simple enough so that I can check the whole thing from end to end when I get a few hours off, or a respite. I'm not making big profit, but at least I am keeping my mind engaged with something other than new ways to get poo stains out of carpet (Here's a thought for you younger lurkers on this forum. When your parents are remodeling their house, encourage them to buy BROWN carpet!!! It might save your sanity 20 years down the road...)

 

[Spamar]

[emoji5][emoji5]

 

[Fullticket]

working from home

I work part time from home. I'm really lucky as this is a part time job I have done for more than 20 years (at first in addition to full time working but now as an add-on to being a carer). I am so glad I have this outlet - it is difficult juggling the hours to get the work done, occupying mum with something if I have to make a phone call.
Simply put, mum is well provided for pension and savings wise and I have POA with another relative. But I HAVE to work to ensure my income is enough to convince the other attorney that I can support myself and am not living on my mother's money (families, eh?).
Fortunately the person I work for is in the area of mental health so is not at all phased if we are video conferencing and an aged parent wanders in and distributes a desk drawer full of papers onto the floor (what an excuse if I can't find a file!) and waves at the nice man on the 'tele.' She goes to clubs and into day care every weekday morning so if I need to video conference or phone I can usually fit it around the times she is out.

I can see that the juggling is going to become more difficult as time goes on but I think I would go absolutely nuts if I couldn't stretch my brain with a bit of normality. I'm doing this at 22.45 as I have completely given up on getting mum to bed in the next hour - she is refusing to speak to me as I suggested it may be approaching bedtime. Clearly not...

 

[BeardyD]

I've worked freelance from home for many years. I had complete control over when I worked and how much work I took on and having crept past 65 there wasn't the same financial pressure that someone younger would have.

When my wife was diagnosed with Alzheimer's I went from doing 5 days a week to doing 3 thinking that I could still keep my mind working and have contact with the real world. Within a year I had to give up altogether. The constant interruptions and repeated questions didn't help but the main problem was that dealing with dementia had taken over my life, I felt as if I didn't have a spare brain cell to think about work. I've come across the idea is that a carer thinks for 2 people, that's certainly how I see it.

Good luck to you if you can carry on working but be prepared to give up BEFORE it gets too much - it's not a failure.

 

[Bambini]

I'm self employed and work from home in an office (summerhouse) in the garden. Mum used to sit in lounge and I had cctv on laptop so o could keep an eye on her. It's possible but increasingly hard to keep working. From summer last year it was impossible and sadly after 10 weeks in hospital mum is now in a nursing home. That said if I had been in full time employment I would have had to resign to look after mum so there is no easy answer.
It's a case of struggle on as long as you can but you have to give in eventually. Best of luck!


Sent from my iPhone using Talking Point

 

[la lucia]

I try and freelance from home but it's pretty difficult. I need uninterrupted time to immerse myself in writing or research and I don't get it so I end up staying up late and then I am wrecked the next day.

One big problem I find is that others don't take it seriously and I'm constantly trying to point out to physios, nurses, etc that I work and just because I am 'at home' doesn't mean I'm 'available'.

I do feel that as I am freelance and the person I care for is self-funding then everyone tries to outsource their responsibilities onto me because I am there......

 

[tryingmybest]

Gosh, I know every loved one with dementia is different but I gave up work to care for my Mum full time when she moved in with me. Even at that time I could never have managed to have worked from home due to her needs. Two years on, those needs have escalated plus she wants me to be with her all the time so even leaving her in the lounge to do any type of household chore such as washing up or hanging washing out or even letting the dogs out is a nightmare!! Mum looks for me all the time and has forgotten how to use the recliner so will try and climb out of it to see where I am which is dangerous as she could have a fall. I daren't leave her now at all even for a few minutes. It's hard just living on Carers Allowance when I had a well paid job although the Financial Deputy allows me Mums AA to help with her living expenses but it's hardly enough.

 

[spbeagle]

I went part time so that Mum could live with me but she went to day care on the days that I worked. That worked really well as I could concentrate on work without constant interruptions. As others have said as the dementia becomes more advanced the person with dementia is not really able to occupy themselves so they are constantly seeking reassurance/attention and in my case wanting to go out walking at all hours of the day and night!

 

[john51]

My dementia is quite mild but we know getting worse. My wife works from home but goes out to visit customers. I know she worries about me forgetting to eat and getting lost.
She does some nights away but I know briefs our grown up children and some neighbours

Sent from my SM-A310F using Talking Point mobile app