My wife, who was diagnosed with MS when she was 19 years has mussed passed away at the age of 51 as a result of pneumonia related to her MS. As I was her primary carer, gave up my career to look after her 24/7 I am now left completely lost. Not only have I lost my wife, but my primary function in life has gone, as is all our financial support. I really don’t know where to turn. I am grieving for my wife, my purpose in life has gone, I am worried sick about how I am going to pay bills, my life as I knew has ended and the thought of starting a completely new life is frightening. I have no close family or friends, so no support. All the support we had, nurses and carers have now all gone. I feel completely abandoned. I am sure there are others here who have similar experiences so any advice would be helpful.
sorry to hear of your loss.
people on here will smother you with hugs.
remember to take care of yourself.
make sure you eat because as a carer you probably looked after your wife’s nutrition so don’t neglect your own.
you need financial advice.
speak to CAB or welfare rights to see if you can claim any benefits.
wishing you well.
here are some hugs for you ((((xxx))))
I am so very sorry to hear of your loss.
It must be a terrible shock to your entire life. I can’t imagine how difficult life is now.
As Carole said, I’m sure the CAB will be able to help with financial advice. There’s no question that you’ll need advice as to your finances.
But in terms of how you move on in life it’s a more complex issue. Have you thought about using your caring experience for paid work? Or unpaid? Maybe there’s work available if you were prepared to use the skills you’ve gained. Or if it’s too soon and too upsetting for you right now, then perhaps there’s some other volunteer work you could do once you’ve got some income sorted out. I assume you’re of an age to either work or claim Jobseekers Allowance?
I’m sure the community here will be joining Carole and myself in offering our sympathies for you.
Man, so so sorry. Words from me ain’t gonna help I would not have thought but hey, my heart goes out to you anyway.
Thanks to those who have posted so far, your thoughts are much appreciated and some good practical tips too. It’s all going to take time I know, one step at a time, but emotions and thoughts all over the place and you can get a sense of panic, wondering what the future holds. Having gone through with my wife how her MS progressed over the the last 17 years, it was such a battle for us and exhausting. Not just caring for her, but battling to get her proper care, all the nonsense with ESA and PIP, I do feel drained. It will take time to come to terms with everything. But good to hear from others on this forum.
Nello Barries, I’m sorry to hear your news. Have you thought about contacting Cruse Bereavement Care. They may be able to help.
Hello Barries. I’m sorry for your loss. I can’t imagine what feelings are racing through your mind. Having been in a set routine for so many years, and now, nothing! Apart from the emotional feelings of loss there must be confusion and fear of the future I imagine. How about considering a short break away somewhere? Whatever your budget might allow. Abroad, somewhere around the country. Either immediately or start planning for a few months in the future. Somewhere where you don’t have to meet people who know of your circumstances (unless you choose to tell them , where there is no routine, no shopping or laundry. Just switch off time to gather yourself. Recharge your batteries. It might give you a chance to come back home with a plan and little more "prepared ",for a different future. Just my thoughts.
I can relate to your circumstances and the vacuum you now feel. However I shall limit my views to purely practical matters.
There are three areas which need your attention. The financial problem, your emotional needs and, to a lesser extent, the intellectual gap.
Emotionally, bereavement counselling is worth looking into. A good source of information about this is the booklet ‘When caring comes to an end’, from CarersUK 0808 808 7777. You can also call the MS Society Helpline to talk about any issues to do with bereavement - 0808 800 8000 or email: email@example.com
Building on what the others have said, prepare for the future. Look into volunteering. Your relationship with your wife has equipped you with a unique set of skills and experience. I doubt that you will want to go into an advisory or caring role just yet but you can look at your options.
Financially, start with the CAB. That organisation has a wealth of information and guides. The Money Advice Service. Free and impartial money advice. 0800 138 7777 or moneyadviceservice.org.uk. Bereavement Support Payment (BSP) is a government benefit for widows, widowers, or surviving civil partners.
And, the question remains, what to do with your mind. It is difficult for those with MS and their carers to have much of a social life, let alone rewarding or fulfilling work or pastimes. Have a look back at what you were doing before you became the full time carer for pointers. What are you good at? What did you used to enjoy?
I apologise if all this sounds dry and simple. I know it isn’t. It’s a massively condensed plan of action. However I can promise you something; as you begin to rebuild your life, this Forum will always be open to you, if you have any questions, need advice or simply want to air your feelings. There will always be someone here who will understand you and what you are going through. Who knows, you may even make some new friends. I have.
Thanks for the advice and information. Lots here to consider and some very helpful ways forward. Thanks and I will follow all this up.
Hi i hear you pain. I lost my beloved to COPD in October we would have been married 26 years today. He was fine one minute not long off his 72 birthday, when i lost him, like in 24 hours. I was with him when he died. He was finally just agreed that he died of bronchopneumonia caused by his COPD. (It went to coroner and long story).
I am 66 and thought we would be together for so much longer. OK I have PPMS but in the grand scheme of things i was healthier then he was at times. We kind of supported each other and he was still working at 70 years old he loved to work and when his COPD started to get worse he couldn’t even help me much but still we muddled along.
Where do you start now. Well you are grieving and i would refer you to some counselling, i decided to go for it, and its starting to work.
You know you can get help with burial?
Next step see your local CAB and find out what you can do about money. Did your wife have critical illness, is the house yours or rented etc. Its dark at the beginning but once you get more information things start to get better. I never thought it would but it does.
I am pension age and i even got some of my husbands pension.
I really feel for you its like a massive black hole you are looking down, but honestly it will get better, you have your health and I know you dont want to hear this at the moment but if your able to work you would make a wonderful care worker there are so many good ones needed. There are so many things you can do.
BUT for now you need to grieve your beloved wife. Your in shock at the moment.
I said to my counsellor it was like my hubby went to the shops to get his cigarettes and beer and disappeared off the face of the earth as on the 3rd October 5am, i watched him slip away from me, never to see him or hear him again.
You will get through this, and i know when you feel stronger you will start to get back into the human race, and meet other people and join clubs perhaps but for right now, you just need to get over the shock of loosing your wife i found keeping busy helped me.
Oh believe me i have lots of family and he had lots of friends and sons etc, and once i had the funeral it was like the Marie Celeste i was just DUMPED. I spend a lot of my time on my own with my care workers (on the other end of the spectrum to you really).
I have a neighbour friend Gerald who lost his wife 2 years ago with pneumonia he was her carer and she had COPD but he is very fit for his age over 70, and he found going out everyday to just go for a walk or get the newspaper helped him get through it as he was doing something. He helps now a little volunteering in old peoples home and quite enjoys it. He was her carer for about 10 years I think.
BIG HUGS, it does honestly get better., xxxxxxxxxxxxxxxxxx
I can only imagine a fraction of what you must be feeling. I was pleased to read the practical information and support above.
I wish you all the best and hope that things improve for you.
Just wanted to offer support. What I would have said has already been covered. Anthony offers some great advice. You’re a young man who has selflessly supported and cared for your wife for all these years. Sure, starting a new life will be terrifying -anything worth doing is, but get yourself back out there with some volunteering to get you back into the working world and help you make some friends. Charity shops are always looking for helpers. Sending hugs x
Barries, I am so sorry to read this and can’t really imagine what you are going through.
Sorry for your loss. I feel your pain, truly and absolutely. If you wanna talk message me, i too like you have just recently lost my partner.
Im so sorry for your loss im sorry im no help but your story is so close to my home cause my husband would be in the same problem sending lots of cyber (((((((hugs)))))))))
Simply. Sorry for yr loss.