Mean question to carers

Hi Jyo, 

I was all ready for a really mean question then. That's not mean at all .

I took 3 months off after diagnosis in June 22 and then worked until last Xmas. My wife at that point was just about managing with a walker but starting to use a wheelchair more and more. At the beginning of Jan I talked to my GP about the situation and me now needing to provide full time care. He signed me off with stress and I've been off now for three weeks and won't be going back until we're the other side of all this. 

Before this decline she could get around with a stick and although I needed to do anything physical like cooking and cleaning she was at least safe from herself so I could keep working. Oh and I can work from home so that helps hugely.

So for me it was when she needed help with everything e.g. washing, eating, toileting etc. The other trigger was seeing the consultant in December and him referring for hospice care. She'd always wanted to be at home towards the end and I'd promised myself I'd care for her as much as I could.

I'm also lucky in that my work provide quite a lot of paid sick leave so financially it's not a strain unless she lasts longer than everyone predicts (or I can't face going back because of grief).

Hope that helps but as you know everyone's situation is different depending on the impact of the tumour on our loved ones.

Chris

Hi Jyo,

I have been the sole carer since diagnosis in May 2023 and so far have been able to keep working, though I am far from firing on all cylinders. My job should involve a lot of international travel and I haven't travelled at all since this started, you never know from one day to the next if she is going to be sleeping all day or feeling very unwell and with 4 kids to manage I don't dare plan a trip away, not even to see my parents over Christmas.

I am slowly reaching the stage where I feel I am asking too much of colleagues to continue to cover my back when I need it or customers to have to accept less proactivity than they are used to. She has been sleeping most of the day today and has been suffering with massive headaches lately, she is also starting to lose strength on one side and has fallen over a few times so I have to  be increasingly away from my desk and backwards and forwards with the kids. So I'm not sure how much longer I can ethically continue to work as if everything were normal and will soon have to ask for some extended leave to continue to deal with this.

In my case though, she is fiercely independent and determined to die with her boots on so I am possibly doing less than other people might have to in the the same position. Changes come quickly though and I think all of us need to be ready to adapt as this horrible illness takes hold.

Hi Jyo

not a mean question at all!  I really was wondering what you were about to ask!

I don't think there is a one size fits all answer on this as it depends on so many different factor including what your do for a living. It also largely depends on how well the person is coping. G was difficult as he would disappear off for walks for hours on end right up to the last week before he went into the hospice . Work was a good distraction as I sat a t home clock watching for how long he'd been gone and stressing about where he was.

I was fortunate in that my boss was happy for me to manage my team from home throughout G's illness. After he had a short spell in the local hospice in August, I trimmed my working hours back a bit as I could feel that the stress was taking its toll. I was playing a mental mind game and telling myself "If i can just get to my week off in October I'll review how I feel then". I knew I was struggling and like Roast Penguin says I was relying on my colleagues more and more and none of it was sitting well with me. 

Fate intervened... I finished up for my week off in October on the Friday afternoon and G took a turn for the worse 36 hours later had passed by the end of the week. 

At the end of the day, there's no right or wrong answer here only one that strikes the right balance for your personal journey through this.

I was off right through to 2nd Jan and have gradually phased back into work, increasing my hours each week. 

One piece of advice I was given a couple of years ago by a colleague was "don't go back too soon as everyone expects you to be back to 100% and you're not." She was SO right!  It can be quite overwhelming returning to work so please bear that in mind for further down the road.

sending you a huge virtual hug and lots of positive energy.

love n hugs

Wee Me xx

Thanks Chris. I think I am exactly at a similar situation now. My husband has been referred to hospice today. I work from home as well. So I was able to help him during eating, washing, toilet etc. but now looks like he will need more support. Need to see what hospice can do/suggest

I can totally relate to you RoastPenguin. I also feel I am relying quite a lot on my team and not sure how far it will continue. 

Thank you Wee Me. Your advice is really helpful about heading back after a break in phased manner. I will definitely take that on board.
You are absolutely correct. I work from home and it really helps me to distract from the stress of this disease but I always keep wondering abt how long can I go on like this. Husband has now been referred to hospice. I will wait for them to come and comment. 

HI Jyo

We were referred to our local hospice initially for community care back in Feb 2023 and although it felt quite scary at the time it really was a Godsend. The care that these hospice "angels" give to the whole family is incredible. It also meant that when G had to go into the hospice, we weren't dealing with strangers when we were most emotionally vulnerable. 

love n hugs

Wee Me xx

Hi Jyo.

I worked from home full time after my husband was diagnosed and fitted it around appointments and radiotherapy sessions. I was even able to be there in person once or twice a week during the better periods but then we hit the last few months. I  was unsure about stopping work as it was a distraction but my manager told me to stop. I think someone else telling me gave me permission. I was glad I stopped as his physical deterioration was faster than I thought it would be and we had amazing help from our hospice.

I had six months off work and made the decision not to return - I was a nurse - I just couldn't do it anymore. I may look for another job but I need to try to look after myself now.

You will find what works for you.

Hugs

Take care sulubee. Sending you hugs. It’s different for each one of us. 

Hi Jyo 

My husband was diagnosed with his glioblastoma at the start of August after a very quick illness where we nearly lost him. He was blue lighted to Cardiff for emergency brain surgery that saved his life, at that moment. I am a Headteacher so was on the summer holidays at that time. I did go back to school in September and I am still working. I am lucky, for the moment, as he can still look after himself although is very tired so rests/sleeps a lot. I have been told that I can take time/be signed off, but for me - at this time - I am continuing to work as I am acutely aware there will be a time when I need to be at home. Although work is a good distraction, I can’t lie and some days, it takes a whole lot of mental strength to get up, sort our two young boys and get myself to work - but at the moment, it is do-able. I will see how things progress and know that when things change, it could be rapid, like in the summer and I will have to decide on how to manage caring for him, our boys and working … the job may have to take a back step … which is hard when I am also a complete control freak and handing over my school for a period of time also adds to my stress levels! Everyone’s journey is so different but the mental and physical strain is so hard … we must do what is right for us, at the time, and ask for the support when we need it. Take care and sending a hug x