Case study: Andrew Johnston - Edinburgh

Tell us about your situation.

My wife, Julie, was diagnosed with Parkinson’s Disease in 1989. It wasn’t until later we were told it was actually Dementia with Lewy Bodies (DLB) which is a type of dementia that shares symptoms with both Alzheimer’s disease and Parkinson’s disease.

Julie’s been in a home since December 2012 when she began having hallucinations and started trying to leave the house.

Did you and your wife talk about this possibility after she was initially diagnosed?

Yes, we talked about it a lot. After her initial diagnosis, Julie and I were forced to confront the realities of the end of both our lives, brought on by Julie’s condition. Over many tearful and difficult conversations, we both agreed that it would be our preference, were it legal, for us to be helped to commit suicide if that person felt their suffering was no longer tolerable. We have both set up Living Wills to cover as much as can be done within the current law but think more needs to be done.

Why do you support this Bill?

Because the choice should be ours, not doctors not politicians, to do what we want to do with our lives when we find it impossible to continue.

As I understand it, the Bill wouldn’t apply to Julie but I believe the people the Bill would apply to, a very small number, should be able to make their own choices. Both myself, and I think Julie would agree, want the Bill to pass.

What part of her condition do you think was the most difficult for your wife?

The most difficult part for Julie was the loss of physical control. Because she was aware of what was going on, she found that the most upsetting. She used to have suicidal thoughts but a social worker was excellent in talking through those issues about in an honest and helpful manner.

She used to say that she didn’t want to be in a wheelchair and that at some point when she was no longer herself that I would have to let her go. That conversation was very painful for us both.

Do you think there should be a way for a Bill to be applied to people who can’t decide for themselves?

I think that’s difficult. Where Julie is there are about 25 dementia patients and seeing them makes me question how they are. Some are sleeping all day long and I don’t know if that is good or bad. They’re not unhappy as far as I can tell so I think it’s important that people make up their own mind but no-one should decide for them.

Has your view changed since you wife became ill?

No, I don’t think it has. This Bill wouldn’t cover Julie because she wouldn’t be able to decide for herself but I believe the Bill should go through. It should still be up to every individual to choose the manner of their death and to do so in a dignified manner.

Have you spoken to other you speak to other people about these issues?

After Julie was interviewed on TV a few years ago, everywhere we went people spoke to us about it. I decided to take the opportunity to ask these people what they thought and they all said that we should have a choice.

How do you feel about the palliative care your wife has received in the home?

The nursing staff have been excellent at every stage. Julie is perhaps not the most difficult patient they have but watching how they deal with other patients is amazing. Julie has said from the beginning of her illness that she believes nurses in palliative care should be paid more for the work they do in the most difficult of circumstances.

What is your view on whether doctors should be involved in the process?

My own view is that I wouldn’t object to a doctor being involved in my death if I requested it and if the doctor was willing. However, I know some doctors would be against it and I would always respect that position.

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