Talk to your loved one with dementia; talk to others in your shoes, says Melissa Chan, founder of Project We Forgot, which supports caregivers of patients with Alzheimer’s and dementia.
Please share your encounter with Alzheimer’s Disease.
I was about 14 when my dad was diagnosed at age 53. Initially, we were confused because his family had no history of the disease but later the doctors pinned it down to the late-onset of effects caused by a car accident he had when he was in his 20s. It resulted in him being in a coma for a week. The extent of the damage to the brain at that time did not seem to have covered the possibility of him having this illness hit him. He battled through the illness for 10 years before passing on in 2014.
What were some of the challenges you and your mother faced?
I have a lot of respect for my mum. Raising three kids, holding a job and being a caregiver was hard work. The disease really affected the entire family and it often sucks you dry mentally, physically, emotionally and financially. As kids, we had to get through understanding the illness on our own as it progressed. We weren’t taught this in school and there wasn’t anyone who came knocking on our doors to educate us. It was first understanding what was happening, coming to terms with it, learning as we went along through my dad’s progression in the illness and trying to help my mum take care of my dad. I think even my mum had a hard time trying to understand it, so it was hard for her to educate us on it.
We didn’t really talk about it as a family, especially at the start. I guess we all had different ways of dealing with my dad’s illness. It was easier for me to speak about it to my friends (maybe because I didn’t want to add on to the emotions that were happening at home) but after a while, I realised that I didn’t want to put my friends in a spot of having to “be there” when they had no context or idea of what the illness was. So I basically retreated and dealt with it on my own.
What did you learn from those years?
Everyone draws meaning differently from the different situations in their lives. I have always wondered what the meaning of my dad’s life was and it is through the Project We Forgot initiative that I have found that. His life inspired me to do this so I can inspire people who are going through the same situation as I did. Cutting my safety net (the security of a stable, paid job in the corporate world) definitely pushes me to work harder and faster but it also carries a lot of insecurity and risk – which I am willing to take at this point because of the purpose behind the work that I do. But just like any entrepreneurial journey, this has been and will continue to be a rollercoaster ride, one that I definitely want to take. I can’t even begin to list out the bunch of great people I have met along the way! At the end of the day, it is all about trusting the process, making impact on my journey and drawing from experiences.
What prompted you to start Project We Forgot?
I lived my life seeing my dad go through and decline in an illness that I feel the world hasn’t fully gotten to know. Especially in Asia, knowledge about Alzheimer’s is not as widespread as compared to the US or UK. When I went through the journey with my dad, I never had anyone my age whom I could turn to outside of my family. There wasn’t support. There wasn’t a platform I could go to to make me feel like there were others who understood what I was going through.
That’s the whole basis of PWF. We are an initiative aimed at building a global community of support and change by reaching out to the generation of digitally-savvy and socially-actives.
Say your parent has been diagnosed with early stage Alzheimer's. Can you suggest two things you can do that may slow down its progress?
As I am not trained on this, the 2 pointers are my personal opinion:
1) Take them out - Going out may be a hassle so it may be easier to retreat and start staying at home more, but I think taking them out will allow them the interaction they require.
2) Talk to them - Don’t stop talking. Even if the conversation is going round in circles, be there to embrace their confusion and cherish the fact that they can still communicate. Pushing for conversations helps push them to think.
How does early diagnosis help?
The biggest part of an early diagnosis is in helping you in planning. Knowing early will help you come to terms with it and start putting things in order (eg.legal and medical choices options).
Is there something you know now that you wish you had known earlier? Anything that caregivers and society may not know or understand about Alzheimer’s?
My focus is also on the younger ones who are having a hard time coming to terms with their parent’s diagnosis. So here are three pieces of advice to the younger ones dealing with a loved one with dementia/Alzheimer’s:
1) Talk to your loved ones with dementia – It’s easy to lose track and forget that they are there sometimes – especially when they seem to be “in their own world”. But just be there and speak to them even if the conversation goes round in circles because you will be surprised at the moments of clarity that you might find.
2) Remember them for who they were and not who they are now – It will feel hard to be around your loved one dealing with dementia – especially when they throw their temper at you. But remember that they would not have chosen to act this way if they had a choice. What you see is caused by the confusion that is happening within them.
3) Find your community – Talk about it. Go to support groups, be around people that understand your journey. It will help you better understand what you’re going through and prepare you better for what is to come.
