So you too have been diagnosed with Alzheimer's? Well, welcome to the club. To state the obvious, none of us chose to be here. This club has many members, all of whom are involuntary. I wanted to write a letter to you because, as I struggle with the effects of Alzheimer's, I know that others are in the same boat. Since my diagnosis, I've been struck with a few things that I want to share with you.
- Regardless of what disease we have, whether it is cancer, multiple sclerosis, arthritis or Alzheimer's, our diagnosis does not define who we are.
Yes, Alzheimer's changes our lives. It's scary to know that someday I won't be able to remember today's events; however, I know, and as long as I'm able I'll help my family to know, that the disease is not me. I have value as a person with individual gifts and unique characteristics. You and I have Alzheimer's; we are not Alzheimer's Disease.
- Although we didn't choose this disease, we can choose how we handle it.
It's hard. I have good days and bad days. I have times that I'm pretty good and times when I get so frustrated trying to perform a simple task. While it may sound cliche or empty to you, it's still true that we can make the choice to either kick and scream (which feels good for a little while and then paralyzes us) or put our best foot forward and be proactive and plan for the future. By planning for the future, I'm referring to things such as considering who can help make decisions when it's too hard, what options are available for care if you need assistance, and arranging for a competent and trusted person to look after your financial situation.
- Keep Your Sense of Humor
Need I say more? (But I will.) There are enough times when we want to cry, so please, laugh when you can. Although the disease is very serious, you don't have to take everything that happens seriously. Being able to laugh at yourself when someone points out a harmless error will serve you well, and maybe it'll keep your blood pressure down, too.
- Don't try to do it all on your own.
There's a song by Simon and Garfunkel that contains the phrase, "I am a rock; I am an island." Well, you are not an island, and you don't need to be a rock. What we all do need is someone who will help when help is needed, and others with whom we can share our struggles and triumphs. Although this may not change a thing about our actual circumstances, it can make a world of difference in how we experience our circumstances. Don't try to hide your challenges from everyone. Seek assistance when you need it from a family member or friend, a hired companion, a religious or social group, a local Alzheimer's support group or an Internet support forum.
I hope that by stepping out to write this letter, you will be encouraged to continue to celebrate who you are, look ahead and plan for the future, maintain your sense of humor, and enlist the help and support of others.
Thank you for listening to me.
Please note: While working with hundreds of people who struggle with Alzheimer's or another dementia, I've compiled these few suggestions that are fundamental to coping effectively. I formatted it as a letter from an individual; however, it represents the feelings and thoughts of many who have been there.