Now Or Never

In case of memory loss, this mom wrote a 'pre-dementia' letter to her daughters

Rhonda Hoffman watched her mother struggle with dementia, so she decided to prepare her daughters for the possibility that they may have to care for her in the same way.

Rhonda Hoffman watched her mother lose her memories to dementia, and wants to prepare her daughters

Rhonda Hoffman, centre, wrote a "pre-dementia love letter" to her daughters Rebecca, left, and Rachel, right. (Submitted by Rhonda Hoffman)
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Rhonda Hoffman learned a lot in the years she cared for her late mother, Eileen.

As she watched dementia slowly take her mother's memories away, Hoffman often thought of her own daughters Rebecca and Rachel.

After Eileen passed away at the age of 93, Hoffman became determined to prepare her children for the possibility that they may have to care for her in the same way. 

Just because my mom had dementia doesn't mean I'm going to, but if I do go down that same road, it would have been so nice to have a heads up on a lot of this.- Rhonda Hoffman

So to pass along what she's learned about caring for a parent with dementia, Hoffman decided to write a "pre-dementia love letter" to her daughters. She included it in a book called When I'm Not Me Anymore: A Pre-Dementia Love Letter to My Daughters.  

Dearest Rebecca and Rachel,

I'm writing this while I'm still in full command of my faculties and I hope that as I age, my mental capacities will remain undiminished.

In the later years of grammas life, we all came to a new understanding of how dementia affects not only those afflicted with it, but everyone around them as well. I'm doing what I can now to stave off the onset of dementia, but I know that very little in life works out the way we plan.

Rhonda Hoffman with her mother Eileen Holomis, who died in 2018. (Submitted by Rhonda Hoffman)

So I'm giving this book to you as a gift in case the time comes when my mind fails me.

If or when this happens, I need you to know that I'm not me anymore. I will have forgotten what it means to be me, and I'll have a diminished understanding of the world and my place in it.

When I tell you everything is changing, I mean everything is changing for all of us. This is not a solitary condition, as it affects everything from how we communicate, to how we spend our time, to experiencing loss on a whole new level.

I will become a familiar stranger who looks like your mom but behaves and speaks like someone else.

Try to imagine me as a baby learning to walk, an excited youngster on my first day of school, and an awkward adolescent experiencing my first kiss. I know it's probably hard to believe looking at me now, but I was full of dreams, new love and passion and enjoyed being a woman.

I was no different than you, so when time runs its course and I'm no longer vital, be patient with me.

I never dreamed that I would sit with you and have nothing to say, but that will become a common occurrence. My mental processes will no longer be sharp, and when you feel frustrated because I've just asked you the same question three times please remember that I'm trying to connect. I may not be successful, but I am trying.

Down the road, if I share words of anger or frustration with you, they're coming from someone I don't recognize. If I lash out it'll be because I'm afraid or feeling vulnerable. It isn't easy going from independence and strength to dependency and frailty. But always remember that the last thing I ever want is to hurt you.

In times when I may not remember your face, know that I still hold you in my heart. 

I gave you life and you gave it back to me with every hug, every movie afternoon and every moment of laughter.  

I pray if I lose my memories that the bad ones go first, like the heartbreaks of realizing that life didn't turn out the way it was supposed to, and dreams that never took flight. The trespasses of those who hurt us, intentionally or not, and betrayals of those we entrusted our hearts to who weren't worthy of that trust.  They just aren't worth holding onto because they rob us of time that could be used to enjoy building good memories. Remember this for yourself even if I don't.

I believe you know I did my very best for you with the knowledge and resources I had at the time. I walked my talk and tried to be a good example for you. I taught you God's ways and once you were an adult I did my best to let you make your own choices and live with the rewards and consequences that came with them.

So many times I wanted to try to keep you from choosing poorly but I bit my tongue… most of the time.

It made me feel so good when you asked for my help with something. We never outgrow the need to be needed. Remember that even now with those around you.

One thing I hope we never forget is how much we laugh together. We enjoyed each other's company, which is more than a lot of mothers and daughters can say. 

I'm so blessed to have shared years of love and laughter with you both. What great times we had snuggled up in my bed when you were young, making up stories and laughing until we cried. So many of those jokes lasted all through your adult years and make us smile even now.

Part of the deterioration of my communication skills is that I won't understand humour the way I used to, and this will be a great loss for all of us. If this occurs, think back on the years and years of fun we had and remember them for me.

Rhonda Hoffman's mother Eileen Holomis, pictured here in an old family photo, died in 2018 at 93. (Submitted by Rhonda Hoffman)
 

You are my world but don't make me yours. Let me be part of your life but don't let my needs consume you. Being a caregiver is the hardest job and I never want you to resent being in that position. Know there is no guilt in letting someone else help me with my daily living. There are many people out there who can take care of me, but only you can be my daughters and friends. And this is the way I want it to be.

Speaking of these matters in a future tense makes it too easy to fall back on the idea that these challenges only happen to other people, and that we won't have to worry about them. With this in mind, this book is written in the present tense from an imagined time when I've already begun the descent into the land of forgetfulness.

The chapters are short but I trust they will help you gain insight into the strange world of dementia that we may find ourselves navigating.

Lastly, we hear stories of people regretting that the last words they said to a loved one were of anger or disinterest, not knowing they would never see that person again. If that is ever the case with us, you can let go of that regret. I know you love me, and a few harsh words could never cancel out the lifetime of love you've given me.

Even if I'm not me anymore, the part that sometimes remembers will feel your love and laughter and warmth and kindness still.

Few people have known love the way you have loved me, and I will carry that with me always.

Love always,

Mom.