My mother was diagnosed in August 2007 with Pick’s disease or Frontotemporal dementia. At the time, she was unable to comprehend what was happening due to her mental state. While she had struggled with mental health issues for years, we never expected this diagnosis. Because she was so “young,” even medical professionals didn’t consider dementia a potential diagnosis.
It’s surprising that some medical professionals still consider Alzheimer’s to be an “old person’s” disease. That’s just one of the issues and is part of the stigma we must get rid of.
The lack of awareness about dementia is so important to educate people. That’s why I’m happy you’re taking the time to read my story and hear about the challenges I face firsthand as a caregiver.
And while I won’t sugar coat it, the challenges are real and the stigma makes a bad situation worse, but at the end of the day, she’s my mum and always will be.
The fact that she was 54 at the time of her diagnosis played a huge part in how people reacted. In my family, it was a mixture of disbelief and even some self-recrimination; wondering if we could have done anything different over the years to ward off the disease.
Now 10 years later, it’s difficult to take my mum out in public because people are so impatient and not very empathetic due to a lack of understanding.
When asked about how this disease changed my life, I tell people that I feel like I’m living my life in reverse. After my mother’s diagnosis and for eight years thereafter, I dedicated my life to caring for her. My life revolved around my mother. I wasn’t living for myself and put her life above my own.
I realized that if I did not start focusing on building my own life, I would be crushed when it came to the inevitable time when my mum wouldn’t remember who I am. Or when she passes away, what will my identity be besides being a caregiver?
I decided to follow my dream of travelling the world in 2014, something I put off for most of my 20s because I felt the obligation to care for my mother. Only in the last two and a half years have I actually felt like I’ve been living my own life for myself.
I feel a tremendous amount of guilt for not caring for my mother in the way I did before, but I know, deep down, that my mum would want me to be happy and independent.
In the last 10 years, I have seen minimal to no improvement in building the infrastructure needed to accommodate the increase in the number of people diagnosed.
Here are the issues I’ve run into:
- Getting a diagnosis is difficult.
- Wait lists for long-term care beds range from 2 to 2.5 years.
- There is a lack of awareness and/or a consolidated voice.
- There is still a lack of funding for research.
- While there are research studies being conducted, the connection between the person with dementia and the research institution isn’t always made.
- Counselling and other supports are not readily available for people living with the disease and their care partners.
- Wrap-around services are not available (medical, financial, social assistance, housing).
- There isn’t a consolidated effort between the various key organizations to improve efficiency of access services (CRA – Disability Tax Credit, Service Canada, the long-term care residence).
- Not very many care homes are using the person-centred care approach, despite the fact that this kind of approach is highly favoured and frequently cited as a best practice and during international conferences.
The one-size-fits all approach is no longer working. Care depends on the individual’s needs because every person’s experience with dementia is different. On a final note, this disease takes no prisoners and can come for anyone, at anytime. It could be your child, cousin, brother or sister, aunt or uncle, mother or father or your grandparent, friend or acquaintance. In your lifetime you will be touched by this disease.
No one is above this and we can, and must, work together to engage, enable and empower people living with dementia and their caregivers (this is the mission of my blog, Discuss Dementia).
We have the power to advocate for the infrastructure (health, financial and political systems) needed to effectively address this disease. But only if we unite as one!
You can help change judgment into compassion, and assumptions into understanding.