Today is Alzheimer’s Action Day. So I’m wearing purple.
But, wearing purple doesn’t mean anything if I don’t talk — or, in this case, write. People don’t talk about Alzheimer’s Disease. Or, at least, they don’t talk openly. It’s almost something they’re ashamed of, like it’s their fault — caregivers and those with the disease. Many suffer in silence. They don’t talk about the hurt, the fear, the anger, the doubt, the hate, the love. They don’t talk about the changes and the surprises — both good and bad. They don’t talk about moments of clarity and moments of complete hopelessness.
But I refuse to be silent. I want people to understand this disease, to know what it is and how it affects both those who have it and those who love the people who have it. I want people to know that Alzheimer’s Disease is more than a sickness that causes people to forget where they put their keys. It’s a sickness that robs people of the things that make them who they are; it robs people of the ones they love.
Alzheimer’s Disease is hard to understand, but I want you to know that it:
- Turns people you’ve known your entire life into someone you can’t recognize, their personalities shifting and changing, turning love into hate and laughter into tears.
- Steals a person’s ability to function normally in an otherwise-simple world: Buttons become impossible obstacles to getting dressed in the morning; coats become straightjackets, twisting and knotting and trapping the person inside.
- Takes a person’s life-long talents and throws them away, a screwdriver and screw an impossible task; numbers on a piece of paper becoming swirling, twirling gibberish.
- Robs people of their ability to recognize the people they’ve loved their entire lives, welcoming in fear and insecurity whenever a “new” face appears.
- Makes it really difficult to love someone — even when you love them so much it hurts.
- Has the potential to tear families apart — guilt, jealousy, anger, fear wedging their ways in the cracks developing between even the closest of family members.
- Creates paranoia where love should be, builds walls where open arms should be.
- Raises new questions every day — before you can begin to answer yesterday’s questions.
- Puts a lot of stress and pressure on the caregiver — particularly in the case of a spouse, whose own hopes and dreams of a forever-partner came crashing down with the diagnosis.
- Requires you to re-evaluate your goals, your plans, your dreams. Things you’ve counted on your entire life — your father walking you down the aisle and teaching your children how to fish, your mother showing your children how to bake, your husband celebrating retirement with you, your wife holding your hand as you walk down the street into old age — cease to seem possible.
- Doesn’t only affect the elderly. Symptoms of Early Onset Alzheimer’s Disease can start appearing in your 30s. It’s not something relegated to nursing homes — it’s something that also can affect people in the prime of their lives.
- Shows you people’s true character. Do they run and hide? Do they stand up and fight? Do they turn their backs? Do they love, unconditionally? Do they find the blessings — even in the biggest messes?
But, like anything, there are shining moments of light even on the most difficult of days. You see, Alzheimer’s Disease also:
- Has the ability to bring people together, uniting against the disease that’s all-too-quickly stealing someone you love from you.
- Makes you appreciate every single second of your life — never knowing when the rug’s going to be ripped out from under you.
- Helps you find the humor in the darkest of days, recognizing the healing power of sharing laughter and love with the other people in your life — even if most people would find your laughter inappropriate.
- Reminds you how very blessed we are to have people in our lives who love us, people to stand beside us and people to hold us up.
- Shows you the true meaning of love, the true meaning of hope and the true meaning of “I will always …”
- Gives you the opportunity to re-examine your life and figure out what’s truly important to you. Suddenly, a dateless Friday night doesn’t matter because you get to go home and have a cup of tea with the people you love, the people who may be slowly slipping away.
- Allows you to let other people in. Because, while this disease can build walls, it also can knock them down. Recognizing the importance of building yourself a support system is key, and asking for help is OK. These times, these trials, are when people can really shine.
- Teaches you humility, understanding and compassion.
- Gives you the ability to dig deep down inside yourself to find a strength you didn’t know existed.
There is no cure for Alzheimer’s Disease. There are drugs that can help slow the progression of symptoms of the disease. But, inevitably, the disease will slowly steal all the pieces of someone’s life until there’s no life left in them. Research, studies, trials — these things are key to figuring out how to stop this disease from stealing any more precious memories and important moments. We must continue talking about it — educating each other. It’s important the people understand this disease so they realize that there isn’t shame in it and we can’t hide because of it. We must talk about it so people understand it, so they see the importance of the research and they appreciate the difficulties of not only having Alzheimer’s Disease but of loving someone with Alzheimer’s Disease. Alzheimer’s Disease has a face; it has a name. It’s not just a list of symptoms, it is a person and a story. And these stories need to be told.
My final message? To put it simply, Alzheimer’s Disease changes your life. Nothing is ever the same for the person diagnosed with this disease and for the people who love them. And, once you hear those words, “Alzheimer’s Disease,” there’s no going back — and going forward is hard. But all you can do is wake up every morning, smile and thank God for the moments you have together and get on with your day, taking it all one step at a time — together.