It started with little things. Stories repeated. Tasks performed 15 minutes earlier, completely forgotten. A phone call to ask for directions to a destination she had visited a hundred times before. Just little things that were so easy to explain away.
But those little things kept tapping on my shoulder, nagging me to wake up. It was as if there was a little elf sitting on my shoulder urging me to speak up, telling me that soon, denial would no longer be an option.
I remember the day that my sisters and I had “the talk.” We had all noticed the little things individually, and they were starting to add up. Now it was time to admit that there was something wrong with Mom.
Together we approached Dad, fearful that he would deny our observations. Afraid that he would try to tell us we were overreacting. Instead we were met with a flood of relief from a man who was also seeing signs, but just couldn’t bring himself to say the words out loud.
Next we had to voice our concern to Mom directly. And here is the very cruel reality of memory-related disease—Mom had noticed the little things too. In the early stages, she was very aware that she was starting to “slip a little” as she called it.
Then came the doctor visits with all of the tests designed to confirm what we really already knew. I sat with mom while they asked her questions.
“Who is the President of the United States?”
“Where were you born?”
“What month is it?”
“What year is it?”
“How many children do you have?”
“When is your birthday?”
“What year did you say it was?”
Then they gave her a drawing of a very simple house. It was the kind of line drawing that a five-year-old might have created to hang proudly on the refrigerator. They asked my mother to duplicate it, exactly.
I had to sit on my hands and bite my lower lip in an effort to stop myself from showing her that she forgot to draw the chimney. That she forgot one of the windows.
“Are you finished?” they asked so kindly. “Yes,” said Mom. “All done.” And she smiled a smile that showed she was sure she had done well. And I smiled back.
Alzheimer’s, age-related dementia, memory loss…call it what you will…it is a scary, confusing diagnosis and there really is no how-to manual out there to teach you how to help someone live with it. It’s a personal journey, a gradual progression and you just try to make up the rules as you go along. Then you find out that there are no rules, so you truly take it one day, or even one moment at a time.
I have always wished that my mother could have written a Dementia for Dummies book. They have those yellow how-to books on just about every other possible topic, so why not? Her wants, needs, likes, and dislikes were very clear in her mind. So now, more than four years after her death, I’m putting myself in her shoes and summing it up in a letter to her loved ones on her behalf. I think this is what she would want us, and everyone whose lives are touched by this disease, to know.
To my dear family,
I guess I am not going to age gracefully. I wish I could change that. I wish there was a miracle cure for me, but there is not. I know that my disease is not because of something I have done wrong. It is, quite simply, something that is happening to me. I can’t control it, don’t ask me to try. Let’s just get through this together, the best that we can.
Here are some things I need to share with you…
I know you’re trying to be helpful, but please don’t correct me. Don’t try to tell me I’m repeating myself, even if I have said the same thing a hundred times. Don’t tell me I know something when I clearly don’t know it any longer. Your constant reminders of my failing mind only serve to frighten and frustrate me. Perhaps, as I am working to learn about acceptance of my situation, your job in this journey is to learn about patience.
Don’t try to make me be the person I once was. While that person is still inside me—and there will be cherished days when that person will surface—I encourage you to also get to know the new me. Accept who I am in this moment. Love the person I am right now, even if I’m having a bad day. It’s still me…I’m doing the best I can.
Don’t try to tell me what I do and don’t like. I may not even realize it myself because I’m changing. Help me find wonderful new things to enjoy.
There will be times when I am sad, frustrated, or even angry over things I can no longer remember or do. Just help me through it. Help me perform the once simple tasks that now seem so hard. I may not remember things, but I still have emotions, I still feel embarrassment. Just help make it all OK. It’s no big deal, right? Believe that when you say it to me.
Help me simplify my life. I get overwhelmed so easily. New places, too many faces, too much noise—everything closes in on me and scares me. I need space. I need routine. I need someone to gently and consistently help me follow that routine.
Be willing to accept help from others. We can’t do this alone. I trust you to make good decisions for me. I trust you to keep me safe.
Let me hold your hand when I need to. Those times will be frequent. Please also understand that there will come a time when I may reach for someone else’s hand instead of yours. It’s not personal, it’s just my mind playing games with my sense of loyalty. Please don’t let your feelings be hurt.
Tell me stories about once upon a time. If I don’t recognize the stories, I’ll still enjoy your company. Let me also tell you a story and act as though you’ve never heard it before, even if I just told it an hour ago. Don’t let it bother you, or me, if I get some of the facts wrong. And tomorrow, be willing to hear my stories all over again with a smile and the good grace I know you possess.
Look at photographs with me. Don’t make it a test, just tell me names and a little bit about each photo. I may remember, I may not—all that matters is that we do this together.
Buy me clothes that are soft and that fit loosely with no elastic to bind. I want shirts that slip easily over my head. Yes, I’m a bit picky now. Find me shoes with Velcro, not laces. And I need a good sweater. I get cold easily now.
I like to be clean. Help me bathe. Help me brush my teeth. Make sure my hair looks nice. It all still matters to me, though I no longer think to do these tasks for myself. I love to hear you tell me that I look beautiful today.
Celebrate with me. Hug me. Walk with me. Dance with me. I love to dance. Sing with me. Did you know I can sing now? I can!
I need moments of joy. I need a stuffed bunny to hug. I want apple pie for breakfast. Don’t tell me that it’s wrong, just sit down and enjoy a piece with me. There really is no harm in having apple pie for breakfast, is there?
Help me smell flowers. Help me touch the soft, warm fur of a gentle dog. Help me enjoy the sunlight on my face. Make me laugh. Let me make you laugh. It’s OK to laugh at the silly things we do and say.
Please understand if I don’t always know who you are. Your visits still mean the world to me. You bring a smile to my face even on the hardest days—it’s your gift.
Finally, when my time comes, don’t ask me to linger. Don’t ask my body to try to do things it can no longer remember how to do. Just be with me. I won’t be afraid if you are with me.
Look into my eyes. I’m in there…you’ll see me. Everything I need to tell you, a lifetime of love, will be shining in my eyes. Accept my gift to you. Tell me you love me again and again, though in this moment of divine clarity, I will know that you do. Tell me anyway.
Then tell me I’m going to be OK. More importantly, tell me that you’re going to be OK. I need to know that you are OK.
With this peace of mind, I will go. Hold my hand for just a moment longer. Then embrace all of the people you love. Let yourself cry. Let your memories comfort you. Then go. Go have a wonderful, joy-filled life. It’s all I have ever wanted for you.
I will be watching. I will feel every beat of your heart. If you find that you need me, I will always find ways to show you I’m with you. You’ll know it’s me.