I have been doing dementia research this week; not really, but it seems that way. There have been two excellent dementia awareness events near me that I attended with my family. If you know my dad at all, you know he is a bulldog. It is why he was such a successful business man. He blasts through obstacles and won’t let things go until they are as he thinks they should be. He has always been this way. He analyzes things and then fixes them, only he can’t fix my mom’s dementia. Neither can I…if only.
However, these events we have attended, one 4-hour workshop and one 2-hour movie, have caused us all to realize we can think about dementia in different ways, including the stigma that goes along with the disease. It is awkward to talk to someone who may or may not be able to talk back to you. It causes the “dis-ease” you feel. You may not know what to say or how to have a conversation. We didn’t either at first, but when it is your loved one, you learn how. You seek out what you don’t know. In doing so, I had the idea of what my mom might tell us all if she could. I decided to be her voice for a moment and write a letter from her point of view about what she would want us to know about living inside a body affected by dementia.
Dear Friends and Family,
I am writing to you today to tell you…I am still in here. I know I don’t look the same. I stare out the window without seeing. I get tired quickly. I can’t move the same ways I used to. But do not let that fool you. I have not vacated my body.
I still love the same things I always have. I might not be able to talk about them, but if you do, I will smile and nod my head. I will laugh if you laugh, and sometimes when you do not. My emotions don’t always connect with what is happening around me, but they are connected to what is happening in my mind.
There is no need for you to be afraid of me, or to feel awkward around me. I do not feel awkward around you. That is the part of dementia I like. I no longer care about what others think of me. I cannot tell you how freeing that part is. I do what I want, because I get a free pass on social norms.
Some days, I can connect with you and what you are saying to me. I can communicate. Those are the good days. Other days, I have trouble understanding. I am confused or cannot remember from one minute to the next. Those are the hard days. I need you…on both kinds of days.
I am not in physical pain. Brain cells do not hurt when they are dying. This is good news! Since I am not in pain, you don’t have to feel bad for me. You don’t have to visit me in a hospital, or wait until I am feeling better. I feel fine. I would love to see you.
I still like to be with those I love. Just because I cannot always identify you by name doesn’t mean I don’t know who you are. I recognize faces, and my face lights up when you come. I enjoy sitting with you, even if we don’t talk. When others around me talk, sometimes I remember the things you talk about from the past and it helps me to feel a part of the conversation. Sometimes I can enter in to the conversation and contribute, because I do remember.
I like to do crafts and color. I have never lost my love for colors and I am still good at matching and picking things that go together. Sometimes I can sit for hours coloring, or playing with blocks to make interesting patterns. I don’t mind, if you want to come and color with me. We can sit together and color without talking if that is more comfortable for you.
I still love my books, even though I can’t really read anymore. I look at magazines, especially if they have dogs in them. Dogs and little children make me happy. I might not be able to talk about the deep things in books anymore, but I still remember loving those things. I nod and smile when I hear about them from others. You can talk about them when you are around me even though I don’t always understand. You can also send me cards. I might still be able to pick out a word or two, but what I can’t read for myself, those around me read to me. It is good for me to know you haven’t forgotten me.
If you want to come for a visit, I would love it. I am best with just a few people at a time. Loud groups or large places overwhelm me, but to some degree that has always been true. I have always preferred deep conversations with a few. Most of what has been true of me is still true of me. This is good for you, because it means you already know me, so it won’t be hard to pick right up where we left off.
I am not dead yet, so there is no need to talk about me in past tense. I know I ‘was’ a certain way before this disease, but I also know I ‘am’ a certain way now. You are smart. I have always known that about you, which means you can figure out how I AM now. I am not a leper, so there is no need to avoid me, shun me, or push me out of your life. I am not contagious. I simply need you. I need your laughter. I need your stories. I need your touch. I need you to show up for me. Our relationship was important to me in the past and that has not changed. It is still important to me.
Mike is taking excellent care of me. I connect to him above everyone else. I hope I will never forget him…I know he will never forget me. He has grown to be a very patient man, which you might not believe, but I promise it is true! He has gotten some caregivers to come take care of me for part of the time, but he is my favorite. He is as sweet to me as when we were just kids in love at 13 and 16 years old. He holds my hand and he gives me kisses. He pats my back and calls me Sweetie. He makes sure I have everything I need.
He has done over and above what is necessary, so I want to make sure he has everything he needs. He is tired. He needs breaks from me. He needs some fun things with me along, or on his own. He won’t go far from me and he tires easily because what he is doing is emotionally draining and physically exhausting. He needs his friends and family to show up. People are always asking “What can I do?” If you are serious about that question and want to do something for me, show up for him.
I will not lie to you. We are fragile right now. We are on a journey that scares us both. Old age isn’t for the faint of heart, but it isn’t over till it’s over. We have not given up and we have decided to take one day at a time. We enjoy each day we have together, even if it is a bad one. I am happy most of the time, because I have always been happy. I giggle a lot because Mike is funny and he makes me feel like I am still okay. I hope I can stay that way. I think I can, if I stay connected with him, but he will need me to connect with others too, so he is not the only one. I would love to connect with you. I will try if you will.
It might be awkward for you, but I don’t ever feel awkward anymore so don’t let that stop you. It might be uncomfortable for you, but it isn’t for me, and so your “dis-comfort” and the “dis-ease” created by my disease, will pass the more you sit with me. It might be scary for you, because you have to face your own mortality. I don’t mind helping you with that. I have always loved helping people get in touch with the deeper things of God and their own spiritual growth. It might look differently now, but I can still be useful in this way.
Most of all, I want you to know that even though I might not always be able to express it, I still love you all. The part of me who knows you intimately, who loves you deeply, is still within me. And even if I get to the point where I cannot express how much you mean to me, it doesn’t mean I have forgotten you. My mind may fail, but my spirit, the real essence of who I am, will always remember, because God has used all of you to shape me at my core. My core is the real me. When all the other is stripped away by this illness, my essence will still be here because it is eternal. God promises me that and I believe him. So, do not cry for me yet…learn from me. I still have so much to teach you.
Love beyond words,