I have Alzheimer’s disease and it feels like, little by little, my brain is being stolen. Alzheimer’s patients can fear being aware of their memory loss. This fear can be especially difficult for those who are diagnosed early or at a relatively young age. Of course, the progression of the disease and its symptoms can vary greatly from person to person, with different stages and timeframes for all…. read more
But no matter your age or the stage of your Alzheimer’s disease, I recommend planning in advance for Alzheimer’s assisted living or other supportive services (such as an Alzheimer’s day care center, in home health care, patient home monitoring, a residential memory care facility, or any combination of these). If you set these things up in advance, they will ready when you need them. As part of your planning, be sure to decide (and legally document) the names of those individuals you would like to make decisions for you if you are no longer able to do so yourself.
For my 60-year-old birthday, I received an early-stage Alzheimer’s diagnosis. The news dropped like a brick on my head.
Since then, my life has often felt broken. I feel the most down when I think about the fact there is not yet a cure for Alzheimer’s. My doctors tell me that with drug therapy I’ll be better of, but, still, every morning I feel like I’ve lost a bit of myself. Like most people, over my lifetime I’ve accumulated many memories of wonderful moments, places, and emotions. These mental pictures are all part of me and of who I am. I don’t want to lose them.
My doctor has told me about the various stages of Alzheimer’s disease and about the great variability of the disease’s progression. I’ve learned how I can use pharmacological therapy and behavioral adjustments to slow the disease’s evolution. I make every effort to stay connected, to exercise, and to engage in things that keep my mind busy. For instance, recommended interventions and activities for Alzheimer’s patients like me include doing crosswords or puzzles, visiting new places, learning new things (such as how to play an instrument), eating a healthy diet, and limiting sugar intake.
But sometimes, I rebel and eat a tray of pastry sweets to console myself. Afterall, I need energy to deal with this… the greatest challenge of my life.
I had suspected that something was wrong but I avoided going to the doctor for months. As long as I didn’t have a diagnosis, I could blame my symptoms on fatigue, or a vitamin deficiency, or stress. At the office there were times when I had trouble remembering things I recently had learned, such as how to use the new computer system. And there were the typical things, too: like losing my glasses, my phone, and my keys. To get by, I used memory aides like lists and reminders and those helped a lot but still, the episodes, worried me.
I knew something was really wrong when I had to use my car’s navigation system to get to my own office and when, halfway through a sentence, I forgot what I was trying to write in the first place.
There are times when I feel scared. I’ve always been a very strong independent person. I do not have many friends and my life has centered around my job: I have a good position, I am satisfied with my salary, and I have accumulated wealth. So far I have always been enough for myself but soon I’ll need to depend on others and I don’t have a spouse or children to rely on.
So, I am shopping around looking at Alzheimer’s day care centers, in home health care, patient home monitoring, Alzheimer’s assisted living facilities, and memory care facilities. I am scheduling my life now, finding a place to live, and setting things up so I can be responsible for my own life as long as I can be. I am also doing my best to make administrative and financial plans and to carefully designate who will help me take care of these things in the future. This person will represent me when I need him or her to — in day-to-day life decisiosn and in medical decisions so I am trying to think about all the possibilities, and my wishes while I still can.
Luckily, I’m only at the beginning of this illness and I still can understand, process, and choose for myself. My memory leaks are currently temporary and I can still prioritize how I spend my time and who I spend it with. So, I am trying to cherish these times — knowing I won’t have them forever.
Of course, feelings of anger, sadness, fear, and fragility often afflict me, but I’m trying not to hide from myself or from others. So I make efforts to be honest and open and to maintain my relationships. I think my friends appreciate knowing what’s going on with me and they’ve shown great empathy and solidarity in return.
I’m not ashamed to say “I am ill. I have a mental disease”. I’m not afraid of what others think. If they know about my illness, I think it’s easier for them to understand and help me. I’ve promised myself that I will fight to stay connected, that I will use all my mental capabilities as long as I have them.
I know I’m not alone in this journey, there are so many others in this world living with Alzheimer’s and I wish you all… us all… courage, and resilience on the path. Thanks for reading this. Feel free to share your experiences in the comments.
For more daily support and guidance, there’s MyHealios family behaviorial therapy and psychoeducation. MyHealios provides support and techniques to help deal with the daily challenges of living with Alzheimer’s .