Carer Stories: Marion and Fred

When Marion’s husband Fred was diagnosed with dementia, she gave up full time employment and her role changed completely.

Read Marion’s inspiring story, originally published by our friends at Carers Victoria.

Marion’s Story

I became a carer overnight after a woodshed fire changed my husband’s demeanor. He lost interest in doing things and was making errors. Six months later, he suffered a heart attack and was diagnosed with dementia (Alzheimer’s). There were subtle changes: being unable to read the calendar. When reading the clock, his thought process was not clear. The following year, I gave up employment to care for him full time.

The diagnosis was a shock. We both felt so many emotions. I felt hopeless not knowing what to do. I knew I was losing Fred, but I was unable to prevent this from happening. There was no operation, no wound so it is difficult to understand what had happened. It has been interesting to see the reactions of other people as it is a very misunderstood disease.

We were both fiercely independent and were not used to seeking outside assistance. We made the most of our time together. We were fortunate as we had a great doctor who was both understanding and knowledgeable.

I never thought of myself as a carer but soon realised I needed help as my role was changing from wife to doctor, to nurse, to dentist, podiatrist, physiotherapist, counsellor, cook, cleaner, general handy person and sometimes clairvoyant, as he had never experienced pain, so was unable to explain it, particularly when they ask on a scale of 1 to 10.

Due to a lack of local assistance, I started a Carers Support Group. I wrote to the Health Minister, contacted the Aged Care Commissioner and Aged Care Complaints. Yes, I was now also an advocate for the person I cared for.

Once you have a diagnosis:

1. Recognise that you are a carer.
2. My Aged Care is your first contact (after the doctor and any specialists).
3. ACAT (Aged Care Assessment Team) will contact you to discuss your needs.
4. Get your personal affairs in order (both of you).
5. Seek financial assistance from Centrelink if needed.
6. Do any travelling or things you had put off.
7. Do any modifications to your house, or downsize if necessary.
8. Seek assistance, make use of services. If not offered, ask!
9. If in doubt, ask questions (there are no silly questions).
10. Don’t say NO. Accept both social invitations and assistance graciously!
11. Make use of services provided (home care, respite, cleaning, outings).
12. If you are the carer, in addition to caring for your loved one, ensure that you care for yourself. Take some time out!

I remember we were sitting in our lounge together looking towards Mt Baw Baw, and Fred said to me, “I’ve had a blessed life.” What a beautiful end to a life well lived.