Dementia: Five Things You Can Do (and some you can’t)

A letter to my younger self (and anyone else who’s starting a journey in dementia care):

Hello, my dear!

I’ve been thinking about you a lot lately.

As I picture it, you’re sitting in the conference room at the neurologist’s office.  They’ve done a thorough workup on your mother:  MRI, physical, blood tests, questionnaires. Now you have the diagnosis everyone expected: she has dementia. They actually say it’s mild cognitive impairment, which may or may not progress, but you know where this is going.

You know it’s progressive. You know your mom is going to experience the same things you saw your grandmother go through: memory loss, paranoia, anxiety, frustration. You are heartbroken, angry and scared. You love your mom. You want her to be okay, for her sake and for yours. Because this disease is going to change both your lives.

You think, if only we could turn back the clock to a time when Mom was healthy, or turn it even further back to a time when people got old and died before their brains were susceptible to dementia. If only we could speed up the clock and live in the future we all dream of, a future in which dementia has been cured, in which we all take a miracle vaccine at 50 and live out our days without cognitive impairment.

But you don’t live in that halcyon past or miracle future. You live now, and she lives now, and you are going to have to get through this. So let me give you a list of things you can do — and things you can’t — as you move forward.

  1. You can’t fix it. Dementia is real. Of course you are going to read all the books and go to all the support groups and learn all the techniques for dealing with dementia. You are going to give it everything you’ve got, because you don’t want your mom to suffer, and you are sure that if you just learn one more therapeutic intervention you will break through and she’ll be fine and everything will get back to normal. But it won’t.
  2. You can’t keep her happy all the time. You have spent a lifetime trying to keep her happy — happy with your school work, happy with your prom date, happy on your wedding day, happy with her grandchildren. Everybody wants a happy mom. But she’s a human being, and her emotions are going to fluctuate. Sometimes she’ll be sad or angry. Dementia is going to magnify those feelings. You can help her feel better, but you can’t make her life perfect. It never was, and it never will be, even if you miraculously become the perfect daughter, which is another thing you can’t do.
  3. You can’t stop living your own life. You have work and friendships and a family of your own. You have precious years with your own offspring. You may think you can sacrifice your creative life, but you actually need it more than ever. You need to make things, build things, craft things, learn things. You need to grow. You can’t let yourself stagnate, or you will succumb to bitterness and resentment.
  4. You can’t medicate it away. The medical profession has not come up with a way to cure dementia. All the pills can do is slow down cognitive decline (in some cases) and reduce some of the anxiety. You are going to have to make hard decisions about how much medication you’re willing to give your mom; you’ll learn as much as you can about what helps and what’s dangerous. But medication is not going to give her a meaningful life. Only human interaction can do that. It was true before her dementia, and it’s true now. More true than ever.

So what can you do, my dear younger self? What can you manage to accomplish in these remaining years with your precious, irritating, irrational, endearing mother? Well, here’s what I’ve discovered in the last five years:

  1. You can love her. Not every minute, not every day, and not perfectly, but yes, you can love her through this. You can hold her hand, sing with her, share meals with her, and get to know her just as she is.
  2. You can learn to slow down. You will hate this at times, because you like to go and go and accomplish what you assume are wonderful things. But just as you slowed down and suddenly saw the world in a new way when your daughter was young, you can slow down with the frail creature your mother has become. You can see the leaves change in autumn. You can marvel at the crisp, clear blue of the sky. You can laugh at silly jokes again. Life doesn’t have to go so fast.
  3. You can ask for help. I know, you like to be self-reliant. So does she. You’re just like her in that way. But look how bravely she is accepting your help, letting you take over things she always managed on her own. She is setting a fine example; follow it. Reach out to other people, to your church, to your friends. Work out that care schedule with your siblings. Ask for what she needs at the assisted living. You don’t have to do this alone.
  4. You can learn new skills. Maybe you thought you had learned all the life skills you were ever going to need by the time you were 50 and she was showing signs of dementia. Think again. You will be amazed at what you’re going to learn about spiritual growth, brain science, medical care, bedside manner, scheduling, financial planning, creativity, nature, music, art, and much more. Your education is far from over. Never doubt your capacity to learn.
  5. You can survive. You think this is going to kill you, but it won’t. It will kill her, in the long run. Something is going to kill us all, and that’s one of the many lessons this disease is teaching you. Death comes to everyone, with or without a certain amount of pain. Accept it. As you visit the assisted living, as you share your life with friends and family, you will experience many deaths. You will attend funerals and say goodbye to many beautiful souls. One day you will say goodbye to her. But your life will go on. You will stop at some point and realize that you survived this, that you grew through it, that you are a different person because of it. Why not stop and acknowledge that right now?

That’s what I’ve learned so far, younger self.  Actually, I’ve learned more, but I think that’s enough for one letter.  The rest is details:  how to lift her spirits, how to figure out what she can still do, how to take care of yourself.  We’ll talk about all that.  For now, I just want to tell you that I love you, I trust you, and I know you are going to be fine — because I am your future self, and you are the one who taught me all of this.

As for the rest of you, the ones just starting this journey — you are not alone. We all know someone with dementia.  We can all grow through this, if we accept that we are in it together.

And you are going to be amazed at the things you can do.

Love till the end of counting,

Carolyn

Mom's Team: my sister Juliana, Mom, my brother David, and me, at my niece's PhD ceremony. Life really does go on.

Mom’s Team: my sister Juliana, Mom, my brother David, and me, at my niece’s PhD ceremony. Life really does go on. Photo by Andrea Sparks.

14 thoughts on “Dementia: Five Things You Can Do (and some you can’t)

  1. I’m glad to see this picture, Carolyn, and glad to read what you are thinking now. I haven’t had an experience like yours, but I’ve learned a lot from your blogging about it. I love the structure of this piece. Best wishes, Barbara Knott

  2. Thank you for writing this letter, Carolyn. It is comforting and reassuring to those of us who are dealing with the same situation. Much love to you and your mom.
    Marianne

  3. Carolyn, I can only imagine how heartbreaking it must be. We have loved June for a mighty long time. Thank you for caring for her, and for sharing your journey with us. I know my sister and I will face it one day, probably sooner than later. Give our love to June, from the Littell’s in Dalton. Great photo!

  4. Carolyn, What a poignant, beautifully-written blog. My prayers go out to your mom and all of your family. I can still see that you are “the bright spark” that you were in our class those many years ago. Your Fifth Grade Teacher

  5. Carolyn, thank you so much for this wonderful letter. I am trying to deal with this’s horrible disease and I doubt myself all the time. It was so nice to see the beautiful picture. I know June and her energetic life through church . I did think she was an extra special lady. I’ll be thinking of her and your family.

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