Sick leave/ carers leave

Hi Slh

when my late husband was passed on to hospice care by the hospital onco team, I was in a similar situation. I was working from home 5 days a week. But suddenly there were carers getting into the house, husband wasn’t independent, cognitive skills and speech was very poor. It was quite overwhelming and I was exhausted. I took a week off from work to just get my head around the new routine. My work provided something called family care leave and I used the same. 

Thank you Jyo, it's always hard to decide when things change daily x

HI Slh

I can totally understand your worries. G's symptoms were dementia-like but I was able to work from home which helped. In the last few months I was logged on veery day but rarely felt able to work my full 7 hr day. My boss was really understanding and basically let me do what I needed to do which was a huge help. I worked up to the week before G passed.

Reflecting back on that time now, much as I needed the routine of work, I admit that I should have taken time off sooner. By the time we reached the end of G's journey I was totally exhausted- mentally, physically and emotionally- and that level of exhaustion takes time to recover from.

Like everything else associated with a GBM journey, there is no one size fits all answer here. Speak to your employer and explain how you feel and take it from there. I'm hoping that they will be supportive. Work will be waiting when you are ready to go back it.

sending love and light and hugs and patience

Wee Me xx

I understand as I too work in a school. I was advised by our school counselling support to make the right decision for now and you can always adapt. I was signed off by GP weekly. Ended up a couple of months. Then I had a phased return. 4 days in my husband had a tonic clinic seizure - first seizure. I was then signed off again as life was turned on it's head again. I then returned to work but my son was at home having returned from university. Without him there I'm sure I could not have been in work. I wanted to give up work as I felt so bad being off. But the counselling service said I should not make that decision as I would find it hard to go back later if i wanted/needed to. I became quite good at knowing if I could go in or not and was very supported by my head teacher. The toll on your mental health will be significant. We sometimes have to put our family first. I hope you have been able to sort something out with your school. 

Thank you,

It's all so hard,my son and I had been sharing the care but my husband had a sudden decline in mobility and started being sick and we had to call and ambulance and attend AE on Tuesday.He  was given a CT scan which showed not unexpectedly that the lomustin has had little effect and now has been passed onto palliative care.

He's currently in a Hospice although high dose steroids seem to have stabilised him for the time being and he may be allowed home next week.I've been given compassionate leave until we break up for the Easter holidays  in two weeks time but undecided what to do after that,we are a very small rural school so having staff off makes things difficult, I don't know whether to offer unpaid leave until September I just feel his decline is going to be so unpredictable,on top of the I don't feel mentally able to be at school my husband is completely cognitively dependent with dementia like symptoms and needs support with most things.

• I'm so sorry to hear how things are for you all. You could speak to your gp? Whatever gives you peace of mind to be there for your family is the right decision. Thinking of you as you care for your husband. It is so heartbreaking x