Carers Information - where to start?

Sorry you are having such a tough time. I had a grim 9 months last year, as the youngest approached A-levels, I worked part-time and helped with appointments for my husband's ops and immunotherapy. Like you our relatives are all at the other end of the country. By the time I went to the Doctor (for something else) in September, she was ready to write me a prescription for anti-depressants on the spot, but I thought I'd turned a corner, and the next 3 months did indeed prove much better.

During those 9 months it helped me that I only worked 9-3 4 days a week, in an internal-facing role when this all started, so I just decided not to increase my hours, which was supposed to be the plan as my sons became independent. I have always liked having 1 working day to myself a week - it is my cooking/cleaning day, but now also taking husband for blood tests/scans day. Since then I have started working 9-5 4 days a week and now we have hit another intensification of treatment, which I am finding much harder to deal with - I have had to opt for working from home for a week or two around discharge from hospital, which helps a lot, but is not ideal from the point of view of feeling I've made an impact at work. 9-3 allowed me to get out of the house and socialise at work for a 2-3 hours at a time, always able to pop home for lunch and check how things are/help, and when I needed to take him to appointments I could be plan to be out for a couple of hours in the middle of the day and make up by working on till 5pm that day.

Working 9-3 4 days a week I was always conscious of being a part-timer, on the mummy track, but felt I gave good value for the hours I worked and I was available in the house at homework time, for help or moral and mental health support. The frustration was that I had to learn not to offer ideas at work, because I could not afford the time needed to make them fly. I had been looking forward to going back to full time 4 days a week, feeling I could fulfill my potential at work at last, but I can't concentrate while worrying about my other half, so now when things get bad I'm now frittering away 7hr days rather than 5hr days - which makes me feel guiltier. I'm not sure it was the right decision to increase my hours.

It seems most likely that you just need a bit of regular respite care for the moment - which could be done by a visit from distant friend/relative, or a paid for carer. I would try keeping it in the family first.

There is no right answer. Hope you find one that works for you. 

Hey Amigo...

Sounds like you have a lot to contend with.

Many of us will recognise the challenges you will have reaching out for help.  My wife was adamant throughout her illness that we didn't need help.  In the end I framed it that I couldn't carry on providing her with the standard of care she needed unless I had professionals and friends to help me.  Somehow the fact that they were there to help me and not her made it easier for her to accept.

I had the same challenge with her letting people to sit with her.  I ended up stealing phone numbers for a few of her friends and whatsapping them to get them to help me.  That may have been easier for me than it will be for you since Fi wasn't really firing on all cylinders at the end - so she wasn't aware of my connivances.  One thing I will say is that mostly friends are standing on the sidelines feeling utterly helpless - they will be only too happy to do something to help - so don't feel bad about asking.  The most important advice I got last summer from the GP was "if someone offers you help - say yes".

In the end your wife will have to accept that you have to keep the rest of your life and your daughter's life going as well as looking after her.  That is a really tough conversation but it is true.  And actually, my daughter gave me some cover as well... Fi could understand that helping my daughter prepare for GCSEs was important in a way that me cutting the grass or going for a run simply wasn't, in her mind.

Work is a tricky one for lots of people on here.  My work were amazing.  I spent most of the last 10 months of Fi's life signed off sick with stress.  The GP could see that Fi needed more or less constant care so they were happy to sign me off.  I tried to go back part-time on a few occasions - but it never lasted more than a couple of weeks.  Suggest you are open with your work about what is going on and try to engage them with finding a solution.  Work out what you need to do "now" - recognising that it might be different in a few months time.  They will hopefully be supportive.

You can ask for a needs assessment for your wife from social services: https://www.gov.uk/apply-needs-assessment-social-services. 

But she will have to cooperate :).  I started this process but it was interrupted by us getting referred to the hospice and them taking control of the whole thing for me (realising I was about to break myself).

If your wife is struggling with mobility you can probably get a blue badge - and she may be eligible for PIP.  And I hesitate to suggest it - but there is a form you can ask the GP to fill in (DS1500) that will accelerate both of those - if they believe she has less than six months to live.  

I hope that is a bit helpful - I wish I could tell you "the trick" - I fear there isn't one.  I recall that it was quite daunting standing where you are now - thinking about how I would cope.  What I would say is that there are lots of services that should swing into action when you need them.  And don't be ashamed to call on friends and neighbours (I know my neighbours so much better now than I did a year ago!).  People really do want to help.  You just need to tell everyone what is going on and what you think you both need.

All the best, brother... it sounds like you are doing an incredible job under very difficult circumstances.  Make sure you do take time for yourself - it's really tricky, I know - but this is a marathon and you will need to preserve your sanity and strength.

Pete

Thanks motherofboys - its good to hear from someone else on how they handled the work situation. I've now submitted the request to move to 9-3, 5 days a week, at least until the end of the school year and then see how things are at that point. I can see the challenges though in terms of not being able to get so involved in things at work as unable to commit.

Yes also good point on respite care - we do have some family visiting over half term to help but that's more so I can spend time with my daughter. However will try and make this a bit more regular, and also think about how can schedule this so I can also get a bit of a break as well. 

Thanks Pete. Its good to hear from others who have gone through similar situation and get some suggestions on what has worked for you. My work have been supportive so far - I want to avoid going on long term sick if I can, so for now I plan to move to part time work for the next few months and see how things are then. 

We had already applied for PIP and Blue badge. They both came through in the last week which helps, and avoided me needing to look into the DS1500 form (I had considered this but tricky given not a subject my wife wants to discuss).

Yes I think a good point is trying to take time for myself, and also not being afraid to ask others for help when I need this.

Hi Amigo 

On the work front it might help you to talk to one of our work support advisers - there is a lot of change going on at the moment especially in regards of the rights of carers and it can really help when we understand what our employer can do for us as well as what they are supposed to do - especially if they do not wish to lose your skills and experience as can so often happen at a time like this.

<<hugs>>

Steve