Giving up on my business due to caring for my dad with dementia

[Kat78]

I am looking for advice on whether or not I am mad to think I can be an entrepreneur while caring for my dad who has dementia. My dad was diagnosed with Alz last summer having had memory issues for a while. I have been looking after him for a couple of years as his memory was declining and he is now 87. I found it more and more difficult to care for him while doing my high pressure job, so I decided to quit my job and start my own business so I could have a more flexible work day and be able to prioritise my dad if I needed to, vs work, without getting stressed and anxious. But I'm worried I've made a mistake because I'm already working long hours and not sleeping much, to build the business and care for dad at the same time (even though the flexibility of when I work is great). I wonder if I should forget the business, and instead go back to working a couple of days a week and then having the rest of the time to care for my dad. I am 45, single with no support, and I love my business and it gives me something to hope for. But I am feeling the financial pressure of still not earning with the business yet and living off my savings. I am worried I will really struggle to care for dad and make the business a success as his disease progresses. Any advice from anyone further down the road much appreciated. I don't want to put dad in care or have anyone else be his primary carer, although I will accept support from carers eventually for personal care etc if needed.

 

[cymbid]

running your own business may seem like a better option but its hard work. There are no safety nets. No sick pay, no paid holidays , no pension. If you feel you need to cut back then cut back on hours within a company . Better still . get help in at home and work the hours that suit you best. In time Dad will probably go into care .whether you want it or not.

 

[Jessie5]

It is a tricky one. I gave up work after my youngest was born as I couldn’t juggle 2 small children, work and my parents’ needs.

It is hard to say I regret it as I had that time with my children as well. But I massively regret the hole in my finances that caring has left me with. I’ll be working until I’m nearly 70 and will still have a rubbish pension. My career progression has stalled. I have gone back to work in the same role I was in 20 years ago.

I wish with hindsight (a wonderful thing) I had sought out more external help for mum and dad at an earlier point and continued to work. It didn’t seem like an option at the time as they refused it. It was only when myself and my sister were broken that we had to insist on it and this. They both still ended up in care home regardless of me having given up work and my sister taking a step back.

But it is hard juggling it all. I suppose what I am saying is make sure you think about yourself and your own financial future in any decision you make.

Also don’t underestimate the sense of self work or a business gives you. I completely lost myself at one point and was really depressed.

Good luck.

 

[Yankeeabroad]

the flexibility of running your own business is attractive but there are downsides as mentioned by @cymbid and socially also possibly.

I found the only consistent way I could manage my commitments (grad courses, consulting work, and my dad’s affairs) when I was with him was to have some of his regular caregivers come while I was there. I recommend this even if they just do some household work, prepare some meals and distract your dad for now. You could also look into day programs or befriending services if they are available in your area.

This will ensure you have some dedicated time to devote to you and your work life and help have the care framework in place as the disease progresses. You will need to have help as it’s only you or you will probably reach caregiver burnout (even if not working).

 

[Gosling]

@Kat78 , this is such a difficult one to work out. I gave up my full time job which was stressful and quite pressurised, to look after my Mum in the early stages, of her getting her diagnosis and the early days of it. I don't regret it one bit. In the end, it was impossible to keep her safe in her own home, so residential care became her new home.
From a financial perspective, it can be difficult. I took some ad hoc work projects in the early days, but it was difficult. There was no way I could earn anything like even half of my previous full time job. Just something you will need to weigh up, but just to emphasise, I don't regret for one minute caring for Mum and giving up work.

 

[sdmhred]

Hi @Kat78
Each person’s situation is different - but hopefully you will reach your own conclusion.
I moved mum in with me for 2 years and dropped to 3 days per week. I then mainly worked from home - but could leave mum safely for a few hours at a time when I visited clients. This was hard hard work juggling the two but like @Gosling i don’t regret it one bit. I did think about quitting and doing my own thing - but am glad I have kept up with an organisation offering sick leave, carers leave etc. in the end I was able to take a months unpaid leave when I needed to transfer mum into a nursing home.
i thought at this stage I would increase my hours but I retain an active caring role and wiht the emotional strain have kept to my 3 days. I can pay my bills and spend very little on anything else.
As to my long term future who knows, but dementia has taught me to live for the moment.
I don’t regret anything and indeed have been pleased to leave the hamster wheel of just work, work work…

 

[Kat78]

the flexibility of running your own business is attractive but there are downsides as mentioned by @cymbid and socially also possibly.

I found the only consistent way I could manage my commitments (grad courses, consulting work, and my dad’s affairs) when I was with him was to have some of his regular caregivers come while I was there. I recommend this even if they just do some household work, prepare some meals and distract your dad for now. You could also look into day programs or befriending services if they are available in your area.

This will ensure you have some dedicated time to devote to you and your work life and help have the care framework in place as the disease progresses. You will need to have help as it’s only you or you will probably reach caregiver burnout (even if not working).

Thank you - yes I have got someone that comes sometimes to give me a break, and I know I will need to increase this as time progresses. A lot of it is just that I want to be able to spend as much time with him as possible while he is still in the early stages, before he declines. I want to make the most of the time I have with him in this stage. But still ensure I keep some money coming in. I don't really socialise much these days and I don't spend money on clothes or anything much anymore.

 

[Kat78]

Hi @Kat78
Each person’s situation is different - but hopefully you will reach your own conclusion.
I moved mum in with me for 2 years and dropped to 3 days per week. I then mainly worked from home - but could leave mum safely for a few hours at a time when I visited clients. This was hard hard work juggling the two but like @Gosling i don’t regret it one bit. I did think about quitting and doing my own thing - but am glad I have kept up with an organisation offering sick leave, carers leave etc. in the end I was able to take a months unpaid leave when I needed to transfer mum into a nursing home.
i thought at this stage I would increase my hours but I retain an active caring role and wiht the emotional strain have kept to my 3 days. I can pay my bills and spend very little on anything else.
As to my long term future who knows, but dementia has taught me to live for the moment.
I don’t regret anything and indeed have been pleased to leave the hamster wheel of just work, work work…

Thank you for your advice. My mum died when I was 20 from Motor Neurone Disease and I also cared for her (with support from carers as I was at school). That also taught me to live for the moment, that life is short, and is why I feel so strongly about having the time I have with him while he is still relatively well. Even if I went back to doing two days a week in my old job, that was a freelance role so no sick leave, or carers leave. I would still be working self-employed - just getting some money coming in instead of no money from the business. I just want enough money to cover my bills each month instead of eating into my savings.

 

[Kat78]

@Kat78 , this is such a difficult one to work out. I gave up my full time job which was stressful and quite pressurised, to look after my Mum in the early stages, of her getting her diagnosis and the early days of it. I don't regret it one bit. In the end, it was impossible to keep her safe in her own home, so residential care became her new home.
From a financial perspective, it can be difficult. I took some ad hoc work projects in the early days, but it was difficult. There was no way I could earn anything like even half of my previous full time job. Just something you will need to weigh up, but just to emphasise, I don't regret for one minute caring for Mum and giving up work.

Thank you. It's good to hear that others who made the financial sacrifice don't regret it. It's such a balance because I also found my previous work really draining and soul-destroying. Whereas my business is so fulfilling and meaningful for me. Such a toughy as I don't want to give up on my dream but I also don't want to miss this time with my fatheror take such a financial risk that might never work out.