MY LOVELY HUSBAND, Philip, was diagnosed with a rare neurological condition six years ago.

In the beginning he needed to use a stick to walk and had to do daily exercises. Six years later Philip couldn’t do anything for himself, and he had lost the power to speak or show facial expressions.

He was totally dependent on me for everything. That meant I was very busy looking after all his personal needs, transporting him to appointments and supporting him when he became distressed. In between times there were meetings with doctors, carers, and so on.

If there was any time left I spent hours advocating and negotiating with medical people, therapists, and government departments.

We were rarely apart in all that time.

Numbness and bewilderment

My whole focus in life was to keep my husband content, fulfilled and pain free. Then last September Philip died suddenly.

After the first few weeks of numbness and bewilderment I became very angry. I had been so focussed on keeping Philip alive all those years. Now he was dead and I was devastated. I was all over the place emotionally and mentally. I still am.

Who and what am I now that I am no longer a wife or a carer? Being the ex carer of a spouse who has died has left me with an awful void in my life. I am always tired and have to pace myself each day. I have lost much of my enthusiasm for doing things and I can’t commit to anything.

I cry a lot I have to push myself to leave the house. I am not keen to be in a group situation. At times it is hard to keep going.

Finding support

My son, Jesse, and his family have been a great support for me. I find having two small grandchildren very healing. I can give them hugs and kisses and hold them tight.

My sisters in Australia keep in regular contact on Skype and Messenger. My close friends are always available for a chat. Our carers group, 24/7 Family Carers in Manorhamilton, has members who are current family carers as well as ex carers so there is companionship and understanding there.

As the wife of a spouse who has died I found one book an outstanding support. It is Grieving: A Beginner’s Guide by Jerusha Hill McCormack. She writes very eloquently about the loss of her husband and two sentences among many words of advice stands out for me.

She writes:

In practical terms, it is important to remember that since everything has now changed, you will change too. More radically you will now have the freedom to imagine the new self you want to become.

As an ex carer I would strongly advocate that people do not ask me how I feel unless they really want to know how I feel. Phrases such as ‘time will heal’ and ‘it was all for the best’ do not console me at all. In fact, they can make my grief worse.

I would also advise that if people feel uncomfortable or don’t know what to say to me – say nothing and perhaps give me a hug or touch my shoulder in solidarity and talk about something else.

Still grieving

Being an ex carer is hard. My grieving can creep up on me at any time and bring me back to the days after Philip died.

It can be triggered by anything. Last week, while happily flicking through the channels on TV, I suddenly found myself watching The Outlaw Joesy Wales and burst into tears. It was Philip’s favourite film.

All my friends tell me that even though I want a quick fix it doesn’t work that way with grief.  I am coming to accept that little by little.

Annie McGuinness, former family carer, lives in Rossinver Co Leitrim and volunteers with 24/7 Family Carers. A new booklet for former family carers is available free of charge by emailing info@carealliance.ie. It is also available to download at carealliance.ie.