The Conversation: Dying Matters' Blog

My name is Norman McNamara and four years ago at the age of just 50 I was diagnosed with early-onset Alzheimer’s. Since then, I have dedicated my life to raising awareness of this awful illness. I lost both my father and grandmother to Alzheimer’s, so I realise that unless they find a cure I am dying, it’s as simple as that.

This is why I think it's so important to be involved in the decision making regarding my treatment and my wishes being respected when the time comes to say goodbye. The meeting with my family was not easy but, many tears and many hugs later, a plan was in place on which we were all agreed. The next few weeks were a revelation: it was as if a huge weight had been lifted from our shoulders and my family and me seemed more at ease now about the future. We all know what might happen but now we all know what to do and how to do if it does. The stress this took from my wife’s shoulders in particular was immense, and now we treat every day as it comes. I spend increasing amounts of time with my wonderful children and 16 grandchildren, knowing that everything is in place for when I get worse.

I am also now an active campaigner for people with dementia to be more involved in end of life and other kinds of decisions. I also campaign for dementia sufferers to speak at conferences regarding their treatment; after all, who knows the facts better than them?

Below is one of the many replies to an end of life care video I produced. The person who wrote this is a good friend and has been so very brave in allowing me to publish her words. She wanted to tell her story through me in the hope that others will avoid being in the same situation.

"Hi Norms, I just watched your video about end of life care and I can honestly say, with my hand on my heart, that this is the most valuable video I have watched in terms of good, practical advice for families, loved ones, carers etc.

"You said so much and every single word of it touched me deeply. Now I know I am not being 'unreasonable' when I go and visit my Mam in hospital and find her sitting in someone else's nightdress or wearing someone else's trousers! I put a lot of love and care into choosing Mam's clothes. I buy what she would have bought herself if she could have. And then I go in and see her sitting there is someone else's trousers with someone else's stains on the legs and my heart breaks into a million pieces. I dont give out to anybody because I am not a person who engages in confrontation, I just point it out politely, but the staff accuse me of being 'unreasonable'. Now I know I'm not being unreasonable.

"The other reason this video touched me so deeply was because last Monday I went to the undertakers on my own to make Mam's funeral arrangements. I have no family and I knew I had to make arrangements long before Mam died as I will not be able to when the time comes. Sitting there with a brochure in my hands trying to choose her coffin was one of the most awful things I have ever done. I am still crying almost one week later.

"My Mam has great faith in God and her saying in life was always, "Things will work out". But in reality, Norms, as you point out, there are practical things that have to be done.

"My Mam refused to discuss her illness. She was a nurse all her life and she believed that she could overcome her disease. She refused to give me Power of Attorney, even though she and I were best friends, because she thought it would never come to that, it wasn't going to happen to her... but it did.

"To cut a very long story short, when Mam dies I will loose my home due to the horrific taxes I will have to pay because Mam refused to take care of her financial affairs. Mam would not have wanted that for me but she would not see the reality of her disease. This is why this video is so powerful and so important. If people don't do the things you suggest in your video, then they will end up like Mam and me, where Alzheimer's destroys two lives, completely and irreversibly.

"I wish that this video could be played on the news so that everybody - patients, carers, loved ones, nurses, doctors etc - could see it and listen to you speak. You are doing so much for people like me and I thank you for all you do."

The film below my own and honest opinion on end of life care. Norman McNamara