Multiple long-term conditions &work-life balance

Carers' health and wellbeing
1

Hello all,

I’m new to this forum. The last few days have been a bit challenging and I thought if nothing else I’d just share what’s been happening.

I’m 39 and ten years ago I moved back into my parents home. At the time, they were in there 60’s, still working in the NHS and fairly healthy. It was my health that wasn’t great at the time. I’m epileptic and in my 20s, whilst working abroad, my epilepsy got worse. Long story short, I came home to go through medication changes. (I’m much better now and seizures are managed).

Also, whilst living abroad I saw many parents of friends pass away, and the fear kicked in and I wanted to be closer to them as they got older.

Over the last decade however, the parents have had a series of health challenges.

Mum has had a knee replacement, and has been diagnosed with glaucoma for which she has had surgeries. As an asthmatic, whilst she was actually ok during the pandemic’s safety measures, she seems to have been getting more chest infections lately even with the vaccinations.

Dad has had a heart surgery and a few years ago was diagnosed with prostate cancer.

Being retired doctors, they’re also not the best patients lol and do not rest. But you could argue it’s better that way and they’re busy. Mum has to keep her hands busy - cooking, cleaning, gardening if she can. Dad tries to keep his brain engaged even though he physically isn’t as active as he used to be- he’s like a big kid and LOVES YouTube (shorts).

I’d love for mum to just take a breath sometimes, and for dad to just get some fresh air and go for a walk.

For the most part we carry on as normal as much as possible, and the parents don’t like talking about their health situation. At least not with me. I’m the youngest daughter and I think they, especially dad, leaves any painful parts out. I have my own chronic conditions (aside from epilepsy … asthma, eczema, allerhic rhinities, PCOS, anxiety, etc).

It’s hard though because I feel a bit helpless.

I’m a marketing and communications professional in the health and care sector and ever since the end of the pandemic, the prostate cancer diagnosis and mums back-to-back surgeries, I’ve been working contract to help balance life, health and the ad hoc care needs. But I’d like to get back to full-time work again and I’ve started looking.

My concern is finding a workplace that recognises care responsibilities, especially as it’s only going to get harder probably, and that is also invisible disability friendly.

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@PurpleRiri
Welcome to the Forum! Thanks for sharing. I’m glad you’re reaching out now because it sounds like there’s several moving pieces that you’re trying to come to terms with.
I’ll jump to your last point, first.

Flexa is designed to enable the job SEEKER to search for companies that offer flexible workplaces. I’ve heard good things, and a recent acquaintance found a good job through them.

This may help find something where the employer is more supportive and understanding.

Both my parents were doctors too, and I used to work in pharmaceuticals so I empathise a lot with what you’ve shared. Many relocations across many countries, then returned home to help Mum care for Dad.

Dad had a crisis-hospitalisation in 2015…I’ll spare you the details but after this we HAD to have more communications on ‘what if’ scenarios.
Dad was usually the ‘planner’ and Mum made everything happen with her organisation and comms skills. When dad came out with vascular dementia after the hospitalisation all that changed
A couple of ideas:
Seeding questions, and having drip-feed conversations or having a heart-to-heart with your parents about your concerns and love for them can open a conversation to discuss things more.
No likes to feel vulnerable, and no one likes to be told what to do.

Unfortunately, ‘feeling helpless’ is something we all feel when see loved ones in pain or see increased risk, as they age…but we can’t wrap them in bubble wrap and restrict their actions…Sorry! It’s YUCK…what we can do is to try to help them make incremental changes that ensure better risk:benefit balance, or tweak ‘how’ things are done

Head over to Roll Call anytime to join in the general chat - sounds like you could do with some empathetic support on the everyday, from people who get it :wink:
https://forum.carersuk.org/t/roll-call-november-2024/125960?u=victoria_1806

I hope something there helps, feel free to ignore anything just thoughts…each situation is unique so cherry pick what resonates.
Take care xoxo

3

Hi Purpleriri and another welcome to the Forum. This is a place where you will never be alone; never judged and you can feel free to ask for advice, guidance or just have a damn good moan about life - with no judgement!

I was thrown into being full time carer for my husband, Graham, after he suffered a stroke in Dec 2021. Very strange as he didn’t have any of the ‘classic symptoms’. He was hospitalised for nearly two weeks and on his return home, I was like a rabbit in the headlights, not knowing what to do or how much help to give.

Rapidly I had to make the decision to close our small medical practice, which was one of the worst things I’ve had to do because many patients were like friends and we employed my ex-sister in law. When I told her she turned against us as if G had the stroke to cause her problems! Since that time Graham has suffered one medical problem after another - cardiac and respiratory issues, prostate cancer resulting in major continence issues and soe cogniitive problems.

We’ve lost many of our ‘friends’ along the way because we can’t go out to socialise and even having guests round has to be limited due to G’s complete lack of energy. This really is when you find out who TRUE friends are.

When he came home from hospital I felt I had to discuss something very important with him and asked if we could sit down one morning to talk through some things. He replied ‘good because there’s something I need to talk to you about’. I started, heart in mouth, by saying ‘this is really difficult, but would you consider giving me Power of Attorney in case anything more happens - just so I can deal with everything for you.’ He looked at me and smiled and said ‘That’s what I wanted to ask you, but I didn’t want to scare you!’

After that it was easy to discuss anything. As @Victoria_1806 says - sow the seeds of conversations and then it makes things much easier. I find that now we can discuss ANYTHING without embarrassment or worrying about offending each other. Life’s not a basket of roses and we wind up each other, but we CAN talk and that’s always a great situation to be in.

Graham’s a bad patient too - he over analyses things and tries to get his head round medical issues and self-diagnose (GRRRR!) all the time. He’s currently in hospital after a major lung infection and last week was asking the nurses if he was dying! Then turned to me and said ‘have they got you in on Death Watch?’ The only way I could reply was to make a joke of it and asked if I need to have him fumigated if he has Death Watch Beetle in his legs like a bit of old furniture! I shock people by making light of so many health issues…it’s my way of coping.

It’s never easy talking to someone who is ill. I have a chronic medical condition and I always thought it would end up being me who was Cared For rather than him - shows how you can never plan for things in life. We’re very fortunate that we are much older than you and G was able to get his State Pension just after the stroke so we have enough to live on but there will be no Round the World Cruises in our future.

I can’t offer any advice on workplaces, but just wanted to let you know you are not alone nd as @Victoria_1806 has mentioned “Roll Call” thread is a fun place to chat and let off steam and ask for advice.

Take good care of yourself.

Chris

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