Feeling isolated

Tell us a bit about yourself here.
Hi

I am new to the forum although I have been a carer to my husband for the last three years. My husband has an autoimmune liver disease which has affected his brain and caused dementia like symptoms and has recently undergone surgery for colorectal cancer. The social worker referred me to the local carers association and although they have many workshops and activities there is nothing for carers like me who have to work full time to pay the mortgage. My husband has carers throughout the day and then I take over in the evening when I return from work. I feel that there is little support for carers who work and I often feel isolated and lonely. Just being able to post how I feel to people who understand is a huge help. I am luck enough to have a beautiful horse and two lovely dogs who keep me sane but I really miss the person he was and our past life. Not really positive for a first post I know but I just wondered if anyone else feels the same.

Carole
Hi Welcome Carole

We are here to listen and share what ever you like. You have a lot on your mind and a lot of responsibility. Well done for keeping everything together. You much be quite exhausted. I guess everyday is a different story. We really don't know what might change. That in itself is stressful and daunting.
I personally do not now work because of husbands disabilities. When I did work it was very difficult and work colleagues didn't really understand.
Welcome to the forum Carole
My husband is in a nursing home because of strokes and vascular dementia. I too miss the man he was, warts n all, the life we had, and feel bereft at times of the future we hoped for.
Do you get any time for yourself? It's important, as you are important too, other wise you will burn out.
Do keep posting, and have a rant if you need. It's a supportive non judgemental forum and is a lifeline to me.
Hi all
I too am new to this forum and have been looking around the site and I am very impressed with the quality of support that is offered
This is my first post and I am aware that it's a reply but your situation, Carol, struck me so much as I am in a similar situation. My wife had a stroke nearly 5 years ago, 2 months after we got married and I have morphed into her carer as well as her husband. To add to the story my 83 year old father came to live with us after my mother's death 7 years ago and whilst he is a help I do have the responsibility of him as well.
Luckily as the boss at work I am able to take time off as and when needed but this always creates extra pressure on my staff.
You are dead right about people who don't really have an understanding of what 'we' have to do for the people we love and how tough it is to keep loving them
What is the point of my reply? Well just to say I have empathy for you and I am not trying to score any points. All of our situations are so very different from what we planned but somewhere and somehow we find the strength to carry on.
Ian
Ian and Carole - hi and welcome to both of you.

This isn't really my area of knowledge, but one thing I've read on this forum over the time I've been on it is that sometimes those who are carers but also holding down full time employment can themselves be classed as 'disabled by association', which means that their employers must (by law) make certain 'allowance' for the demands made on them by their carees (ie, the persons they are carers for).

In both your cases it may well be worth exploring whether you fit this definition, which would give you perhaps some more 'leverage' with your employers (however supportive they are being!) to gain some more 'headroom' in terms of the requirements your carees make of you.

Other forum members know a lot more about this than me - I'd never heard of it till I joined! Also, of course, there are the team of experts at Carers UK itself, who are best contacted, so we are advised by email, rather than the (very busy!) helpline.

Kind regards, Jenny

PS - Ian, you might like to start your own 'newbie' thread so we can answer you directly as well? The mods can do this for you if wanted to do it (no requirement, just a suggestion!) (I know 'first postings' can be easier to make if they simply join in with an existing discussion - it feels less of a 'pedastle' so to speak!
Jenny, I think Ian's boss is trying to be kind to him!
Oh yes, I wasn't accusing him! Just saying that the employers themselves might find it 'easier' to have a kind of 'legal say so' for what they do, eg, if they have to justify it 'up the line' etc. And also it might 'play better' with colleagues, as well, if they saw Ian as 'disabled' in that respect - might make them understand more what he - and Carole- are coping with on a daily basis.
Sorry, Jenny, I was just being facetious - Ian said he is his own boss.

Carole and Ian, welcome to the forum. I hope you find it really useful to let off steam and exchange ideas on how to deal with such a touch situation.
Shows you how carefully I read the posts! :) :)
Welcome Ian, as the boss I suspect you feel even more torn between your business and your family. How much care does your wife need? Does she expect you to do it all? Are you getting any practical help for her? The best advice, and the most difficult to achieve, is to "look after yourself". Do you always come last in the pecking order? My husband and I ran a good small business for many years, sadly he died suddenly at the age of 58, I often think that the pressure of running the business and caring for his elderly parents and our son with severe learning difficulties was at least partly responsible, he was a workaholic, found taking time to just enjoy himself the most difficult thing of all.