I didn’t know that transition would be my new normal. My life has taken several major changes, all unplanned. It made me the person I am today and for all of it, the good, the bad and the ugly- I am extremely grateful.
Don’t get me wrong, it was a hard pill to swallow, actually several hard pills. I have learnt, the only way is through it. You have to keep going, can’t feel sorry for yourself. I learnt to rely on number one – ME. No-one is going to save you, but you. I learnt to forgive myself for my mistakes and forgive others for their lessons- that I had to learn, sometimes the hard way.- most times- the hard way.
No regrets at all, I accept everything that life has thrown at me, everything had to happen the way it did, or else, I wouldn’t be the person I am. A cliche- yes, but a true one- Everything happens for a reason. I have battled with my mother’s Alzheimer’s disease for over 2 decades.
I have shared my knowledge and expertise many times over, and I have a part-time counselling practice, to help one on one. I continue to study, coming towards the end of my doctorate in education, where I hope to continue educating and developing curriculum and various online courses that I feel are necessary.
I have spoken at international conferences on Dementia, and have written several journal articles and 2 books on the topic. I am the sum of all parts, I also started a podcast surrounding my book – Alzheimer’s -what they forget to tell you, as there is no handbook for when your loved one is diagnosed with this disease, and definately not one when you take on the roll of informal caregiver.
I started a foundation for Caregivers entitled the Reinvent & Restore Foundation, for what I believe to be the backbone of healthcare- individuals such as myself that no-one remembers (the unpaid caregivers). I am an advocate, an author,a sister, a mother, a cousin, a friend, a student, and informal caregiver and daughter. I have embodied all of these roles into one and as challenging as it was, I have no complaints.
On January 13th, 2020, I no longer hold the title of informal caregiver or daughter as my mom decided in her own dignified way to end her battle with Alzheimer’s disease. Her strength was admirable and I am honoured to have been apart of her entire journey. Although I am no longer an informal caregiver, I am even more determined to expand the Reinvent & Restore Foundation for caregivers, so that I can advocate and provide supports for individuals that care for those that cannot care for themselves.
I believe in life, we all have a destiny. My mom imparted so much knowledge when she was well and it continued in her lengthy disease. It forced me to become resilient. It also forced me to learn everything I could about her disease and advocate for her care. It taught me compassion, empathy and strength. If she wasn’t going to give up, either was I. I have met so many great people along her journey. Many silent cheerleaders, saying a kind word here and there. The reality is, that caregiving is isolating and lonely and depressing. Watching your loved one fade away little by little everyday is heart wrenching.
I was fortunate enought to have the ability to take care of my mom in my home. There is still apart of me that wonders if I could have done more, that is just the daughter in me. There was really nothing I could have done. My mom’s paid caregivers were the best, they treated my mom, like their own. Having my mom at home, has provided my son Jaelon, so much direct knowledge, which is why he wants to be a Neurologist. He grew up with his grandmother having this disease and he was there with her at the end. When he checked for her pulse, It like it was in the future- where he was a doctor already. It was probably how she wanted it. The two people that have been with her from the beginning of this disease, and she just wanted the two of us at the end. I suppose she knew we would be stronger for it, and that we could handle it.
It has been 2 weeks now that my mom has gone, there is still so much to do. There is no time for grieving. There is alot of paper-work to do and now I will have to insert the date of death, which now will be forever etched in my memory- that day. I will forever remember bending over to listen to her heartbeat, and thinking I heard it, not realizing it was mine, because it was beating so hard. It was holding her warm hand and calling her name but knowing that she was gone. Then telling my son, “I think grandma is gone.” and him saying, “No!” It will be reliving it all over again until everything is complete. There is a feeling of numbness right now, of lack of purpose. I know it will pass.
I don’t feel my mom around me at all, which makes me happy and sad simulteanously. I feel she is finally free now. I had a conversation with my son today and asked him if the death of his grandmother has made him want to be a doctor even more. He said now he feels even more obligated to become one for her. I think she would be extremely proud. My son only knows this disease, he didn’t get to know his grandmother at all. However, she taught him so many things, just by observing. He also learnt empathy, compassion, stength and reslience. These are all necessary qualities when you are looking after someone in your home.
So in my grief, that comes in waves, there is a silver lining. My mom will never be forgotten. Her legacy will live on with my brother and I. We now have an obigation to ensure her memories are shared and never forgotten.
As hard as this process was, watching my mom battle this disease, I would do it all over again. I am a better, stronger, kinder person for it and I am sure my son is too.