So husband has been diagnosed with leukemia signed of since May and will be till next year. Have a paid job and work from home carer for my husband, part time job to as a volunteer and colleagues say you look drained. So realistically I have 3 jobs. Can’t get any carers allowance as I’m over the limit 4-5 hours sleep a night. When I try and have 8 hours time alone 1dey a week this is when I volunteer I get texts calls from the husband all day long.
Is it just me or anyone else out there has the Same
You can’t go on like this! You need to look after your mental and Physical health. My husband DIED after caring too long, he was just 58! You need help and support so you can be still and rest. Give up volunteering, this is not the time. Ask your GP to arrange counselling. Carers UK has a confidential helpline, they can go through your finances and talk about practical help.
@Richie Welcome to the Forum. Sounds like you have a very busy life.
So you are a Special then? A regular weekly shift is a big commitment - even leaving aside you Caring role. Don’t get me wrong, I admire you for doing it - one of the unsung whom so many Regulars look down on in my experience - but isn’t the commitment to 16 hours a month? Just wonder if you can reduce the hours slightly so you get some “you” time. You may well see the time on duty as being ‘You’ time so I am not trying to tell you not to do it, just that if you need some “space” that could be one thing to think about. Also I get exactly what you mean about it being a way of interacting when you are so isolated in Caring role, so you may be getting as much from that as having down-time.
I completely understand the feeling of being on-call 24/7 as Graham panics is I go out and am not back when he think is should be or when he thinks I told him I would be. When I was going to the gym regularly I would text when I was heading home. One day I didn’t and found him in a panic and a strop ‘you didn’t tell me you were coming home - I was so worried, I thought you’d had an accident’ (I was 10 minutes earlier than usual - not late!!!) He panics because he doesn’t know what he will do if anything happens to me, so starts to think the worst. That could be what’s behind your husband messaging you all the time. I wonder if it’s possible to get him to understand that you can’t always respond and see if you can agree one or two times during you Shift when you can message or phone for a VERY quick chat for his reassurance? I know the difficulty with that is knowing what you are doing and if you get caught up with a Job you can’t always keep strictly to a time, but maybe “between x and y I will give you a call - but don’t worry if I run late as I may be tied up”.
Just thoughts to ponder on as you know how he will react better than anyone.
Have you thought about having a chat to Welfare in the Force? Those conversations are always confidential and that would be with someone who understands the pressures of your volunteer role. Of course it does mean finding time to go to see someone - so swings and roundabouts!
Do the Team know about your role away from your Duty times? Hopefully they are supportive as well.
Your post says “holding down three jobs”, you say you are tired, but when I suggest you give up the unpaid job, it doesn’t go down well. As carers, our lives are very full. There is a temptation to plough on regardless, but long term that is a very risky strategy. It may be what your head wants but not what your body needs. Surviving on so little sleep and rest is not good long term. When do you get peace and rest at home? Or elsewhere?
What I mean is if I give up my volunteer work then I would be home 24/7 with no time what so ever for my self for a bit of time out to get my mind back. Something which is important and my work colleagues are ones that give me a pick me up as our saying goes ‘it’s alright not to be alright’ and they are a shoulder.
Does that make sense.
I understand that, but having had 10 carees over a 40 year period, I learned the hard way that what I needed was some real “Me” time. My husband DIED from the stress of caring, for his parents,my parents and our brain damaged son. It was only after I nearly died, first from cancer, then a car accident, that I realised that I didn’t know who I was any more. Everything I did involved helping someone else. After 5 years of not being able to walk, learning how to walk again after major surgery, I had counselling. Exhausted, I went on holiday to a singles only hotel. I slept most of the first week! Then I found out that the fun loving me still existed, and I really enjoyed the second week. Now I go away regularly, usually to Greece for 2 weeks every September, and to a cottage after Christmas accompanied by my sewing machines, so I can recover from a busy Christmas. I can cope with most things if I know a holiday or break is coming. Wht do you do for yourself?
Do you have to answer messages immediately during the day or is it just the fact of receiving them that is the ‘nuisance’/interruption?
Have you been in touch with MacMillan to see if they can provide any help or support for either/both of you? I now Hubby may not want ‘outside’ help, but for your own health, getting some sort of a break is important. We were both going to the gym for a while (I still laugh at the thought of ME at a gym!) before G had a relapse and I continued til GP said ‘no’ due to BP issues but am trying to get back to it soon. THAT gave me two hours away from the house and (this sounds bad) away from Graham. The only other break I get is walking the dog twice a day, when I can lose my self. Admittedly one of those walks is before G is up in the morning, but it is ME time when I plug myself in to an audiobook and wander ‘aimlessly’. At the gym, I would again plug into a book and focus on something other than the monotony and worry of caring.
I know it is so difficult to make time for yourself when Caring - particularly when you have a full time job and the day of volunteering - but I found out how important that can be. I got angry with a friend who kept nagging ‘get out more’, ‘make time for yourself’ because he did it in a way which showed he had no understanding of the awkwardness of basically saying ‘I’m off out to enjoy myself while you sit at home unable to go out’. That was because he didn’t see the full picture of how Graham’s energy levels drop suddenly - even after a visit by friends - so when I had to point out that a four hour visit left G exhausted and a shorter visit would be more beneficial, he stopped coming round ‘well, it’s clear he doesn’t likes visitors’. NO NO NO - he likes to see people, but in short doses!!!
Graham’s had a bad night tonight. Up six times and at 4.30, I gave up and made myself tea - we refer to this time as my PNT - Pee and Tea Time - and I end up on the keyboard chatting or doing some writing which gives me a short escape before the dog starts nudging for his morning walk.
Everyone’s situation is different and none of us will TELL you what to do, but rather offer suggestions from our own experiences.
Is there anything you can think of which would make your life easier? Some of us may be able to help with ideas which would enable you to make that happen as you can see that we’ve all had bad times.
Richie, I understand what you mean about having a bit of “me” time when you are doing your volunteering. I am the same with my job - hate the job but getting out of the house once a week (despite being run ragged when I am on duty) is like respite in itself.
Give up the volunteer work until you know you “really” have the time to do it.
I work full time and care for my father. I would like to work as a volunteer tor
CareUK and AgeUk but realisitcally I know I’dont’ have the time and would be putting extra burden on myself.