Parkinson’s and end-of-life: “I’m not afraid of dying”
Author: Saskia MairPublished: 13 February 2020
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We hear from Eleonor Högström, president of the Swedish Parkinson’s Disease Association and a former nurse, about making end-of-life preparations while living with Parkinson’s, why she’s “not afraid of dying” – and the importance of finding someone to talk with
Hi Eleonor. Can you tell our readers a bit about yourself?
I was diagnosed with Parkinson’s in 2006,
at the age of 60 when I was a registered nurse working in primary healthcare.
I didn’t expect it. I had some muscular
tension in my neck and shoulders and thought I had been writing on my computer
too much so I went to the doctor, thinking he would send me to a
physiotherapist or for some ultrasonic treatment and that’s it. It didn’t turn
out that way.
I was transferred to a neurologist
instead who immediately saw that it was Parkinson’s.
Did you know much about Parkinson’s
before you were diagnosed?
You would think I would because I had
been working with older people as a nurse but actually, I knew very little.
The image I had of a person with
Parkinson’s was somebody sitting in a wheelchair, tucked up, hanging to one
side, nearly sliding down to the floor, dribbling, and with no way of connecting.
And it was very hard to say, ‘Is this going to be me?’ It was very difficult to
adopt the idea that I had this degenerative disease.
How did you overcome your first
Actually, by chance, I happened to see a programme for a support group for women with Parkinson’s. I said, ‘Well that’s me’, and I joined this group. It was arranged by the Swedish Parkinson’s Disease Association and through it I got in contact with people who understood everything –and it mattered a lot to me at that time. It was important because it took some time to accept that I had Parkinson’s. The Parkinson’s association is like gold to us.
When did you start thinking about end-of-life preparations and what made you think about it?
I’m getting old – and I’ve seen people
who have not been able to take care of themselves.
Not being able to speak for yourself, that’s the most horrifying future I think and that comes with end-of-life. It’s essential for your wellbeing to be able to be calm, not to have pain, to be well medicated and taken care of. There are so few places where you can get real treatment and care.
I’m afraid I will be left with someone
who doesn’t understand. I’m not afraid of dying but I am afraid of not being
able to communicate with my carer – if I get to the stage where I need a carer.
And if I can’t, that makes me very worried.
Do you feel like you have someone you
can talk to about these worries?
I can talk to my husband. He is one year
older than me and he has no obvious illnesses. It’s very difficult to find someone
that you really trust in to be able to discuss it with on an equal level.
Are there ways that you and your
family have been preparing – emotionally or financially?
The only thing we have done is move home. My husband and I said that we would move while we could decide ourselves where we wanted to live. It’s really perfect for us. Our flat is designed with a special big bathroom, wider doors and so on – so we could have a carer come here.
In what other ways do you think people
with Parkinson’s can prepare?
It’s difficult to give advice but I would
say talk about it. Don’t keep it inside you, find someone to talk with.
Making a will
Making a will ensures that your belongings will be distributed according to your wishes when you die. Documents available at stationery shops and online, which you can fill out yourself, may provide a simple solution.
Power of attorney
Assigning a ‘power of attorney’ to a friend, relative or solicitor gives them power to act on your behalf, if you are no longer able to do so. You should establish their responsibilities in a legal document. You may also wish to write a ‘living will’, which sets out your wishes, if in the future you are no longer be able to make decisions yourself.
Discussing your wishes
Help next of kin by writing a list of where they can find important documents and communicate if and how you would like a funeral to be arranged. Likewise, it is important to discuss your emotions to family and friends, reaffirm your feelings, resolve disagreements and say goodbyes.
Counsellors may be a useful resource for people making end-of-life preparations, providing confidential support. Others find comfort from religious or spiritual beliefs and may choose to talk to a spiritual leader or chaplain about their experiences.
For more information on Parkinson’s and preparing for end-of-life, please visit the
Parkinson’s Portrayed: real stories reflected through art
Helping others with Parkinson’s ‘filled the gap in my life’