By: Debbie Keay
My diagnosis of young-onset Alzheimer’s did not come as a shock. What caught me off guard was the emotional rollercoaster that I endured over the course of the next 18 months. Even though I was a Social Worker and thought I had all the answers, my positive attitude took a little more than a nosedive.
As we know Alzheimer’s is a silent disability. You may share your diagnosis with some, others not. Most of my family and friends found out about my diagnosis just recently, three years after my diagnosis from an article where I shared my story on the front page of the newspaper! A private person, I have lived my life – “some information for some, some for none, some for everyone.”
My diagnosis experience included unexpected and extreme feelings. They stemmed from caring for seven family members over the last 40 years and my misconception about dementia. As mentioned previously, it took me 18 months to adjust to my circumstances. There are still challenges and disappointments, but I have ways of dealing with them. I call my coping strategies:
My 3 C’ s – Can’t, Challenged, Can.
When I was first “given” my diagnosis- “taken” from me was the life I knew. Despite my extreme feelings of loss, I was encouraged not to think about the things I “can’t” do and encouraged to focus on the “can’s”. This well-intended suggestion was easier said than done and did not work for me initially. All the focus on my disability was the “CAN’TS”. All my past seemed to have been wiped away, my present and my future. Addressing my losses was instrumental in my self-care. I needed to mourn all my losses. Those supporting me would say: “There is a light at the end of the tunnel”. I would respond: “But, I am the caboose and cannot see the tunnel”.
Not only was I having to adapt to my new circumstances, I had to adapt to the different way people around me were seeing/treating me. Those finding out about my diagnosis were at a loss of what to say and do, and relationships started to fade.
Slowly, things started to change. Once addressing and accepting my “CAN’TS”, I began to focus on my “CHALLENGES”. Not easy, but I guess that’s why they are called challenges, and this is when something wonderful started to happen. In facing my “challenges”, I began succeeding at mini accomplishments and my confidence became elevated, leading me to tackle more difficult challenges. I had not realized how much I had allowed dementia to take from me.
The more I succeeded at adapting to the “challenges”, I started to focus on the “CAN’S”. The more “CAN’S” done, the more my old self returned. While my life today is not the same as what it was three years ago, or what I envisioned my life would be like, I can honestly say that I am enjoying moments of my life today. I feel a sense of purpose. I feel a sense of accomplishment. Most importantly, in living with dementia, I still feel like me.
Tips That May Ease Your Journey
- When diagnosed ensure you have a care team (doctors, pharmacists, etc.) that listen to you and understand dementia. Don’t be afraid to ask every question that comes to your mind. (E.g.: Are there medications that may help with symptoms?)
- Connect with your local Alzheimer’s Society. We cannot do this alone. Friends and family will be able to help, but their level of understanding may be minimal even with best intentions. The Alzheimer’s Society has an excellent education program for those with dementia and their Circle of Care/Care Partners – all free of charge!
- Join a support group even if you are shy and private like I am. Being supported by people who know and understand what you are experiencing is amazing. To be able to laugh and enjoy life despite the diagnosis, is a gift you will give to yourself. You may find your “cans” far outweigh your “cant’s”/”challenges” put together.
- Reach out. The Alzheimer’s Society offers free counselling as do many physicians’ offices. There are also crisis phone lines to help in the middle of the night if you feel “punky”. Remember it is okay to feel what you feel. Some will spend thousands of dollars to get their cars fixed, why not treat yourself to that same care.
- Try not to beat yourself up on the things you are unable to do or that you are disappointing others. This was a big issue for me. Feelings of being useless, guilty because you cannot meet the expectations of others, not being a “super-duper”, always there for others (not bragging here LOL). You may question your lack of participation, withdrawing, feeling emotionally depleted. Remember, these may be symptoms of your dementia.
- You also all know this: get restful sleep, eat well, exercise, eliminate stressful situations and avoid negative people (I call them “negatoids.”) Find a time to be with yourself, your quiet place. Remind yourself that you still have lots to offer.
- Find a confidant(s) that can be that listening ear and won’t downplay what you are going through. So many people say “You don’t look like you have dementia.” or “I lose my keys all the time, those senior moments.”
- Some individuals have a faith connection. Trust it, even though you might think you’ve lost it. Someone will find you that will help you reconnect. We do not have to do all the work. We need to be patient with ourselves and find our “cognitive ramp”, a term one of my support group members use. If a person has lost a leg, they get a prosthetic; if a person has lost sight, they utilize a cane or a seeing eye dog; if a person uses a wheelchair, they need ramps to get in and out of buildings. Our disability is unseen, so we need “cognitive ramps”, people who can help us with our thinking when we need it or ask for it. I call them nudges. A beautiful friend is my computer mainframe, giving me reminders, putting my ideas to paper, etc.
- Educate yourself. There are free courses the Alzheimer’s Society offers. If searching the internet, be cautious of the resources, some are very outdated. Discern what is valid. Speaking to people with dementia and connecting to respected/academic/gov’t agencies will ensure recent info is available and recognized as good resources.
- Identify yourself not by what you can do, being a spouse, mother, career person, sports athlete, etc… but by who you are – Caring, intelligent, educated, loving, kind, encouraging, life experienced, and far more than you probably think you are. It’s the inside you that really matters.
- There was a book entitled “Don’t Sweat the Small Stuff”. You need to learn to prioritize things. For me I do not worry and do not sweat the small stuff but I sure to take care of it because if I do not take care of the small stuff (because I forget due to my dementia), the small stuff turns to HUMONGOUS STUFF LOL. Remember though what works for one person, may not work for another. Each person’s journey is unique. Take all that you learn and take the very best that works for you and your journey. You will be amazed at how the reservations you may have had about this disability will be so much lessened.
- Stay involved, try new things. For example: Perhaps you would like to share your thoughts and ideas with this newsletters? . . .Hint, Hint. Think big. I plan on going skydiving in the spring.
About the Author: Debra Anne “Debbie” Keay lives with her cat, rabbits and birds. Artistic, a continual learner, environmentalist, and more, Debbie began advocating 40 years ago for causes close to her heart. Debbie was diagnosed 3 years ago with early-onset Alzheimer’s Disease. She now uses her experience to advocate for community inclusion for those who live with dementia.