Can there be joy with Alzheimer’s? I say yes

The Well Blog in the New York Times recently featured an essay about lessons the author has learned from his grandmother, JoAnn, since she was diagnosed with Alzheimer’s. Some excerpts:

“Through the haze of our grief, my grandfather Alfred and I began noticing that, along with her memories, JoAnn’s grudges, hurt feelings, worries and regrets were disappearing. In fact, within a year, she seemed happier than ever, more present and at peace. …

“So often, I hear people say they’d rather die than get Alzheimer’s. This is, in part, because they believe the disease will force them to abandon themselves to oblivion. But my grandmother showed me that we are more than the sum of our memories. …”

I wouldn’t say that I agree with everything the essayist, Robert Leleux, had to say in his post. But I have seen the same thing in my mother: She is at peace now, perhaps for the first time in her life. She and my aunt had a complicated sibling relationship as kids. Their parents were alcoholics. Mom, too, struggled with alcohol and depression. She spent most of her professional life unsatisfied. And she was a single mother of three kids.

While there is nothing good about this disease, the fact that she can navigate it from a peaceful place has been a comfort to me and, I hope, for her, too. But Leleux’s piece has provoked some pretty angry comments. Many take issue with the title: “Finding Joy in Alzheimer’s.” Some are offended by the very suggestion that there can be joy associated with Alzheimer’s. I don’t deny them their experiences. Mom – and I – have endured plenty of misery. But having this blog has encouraged me to regularly reflect on my relationship with Mom, and that might be part of the reason that I can also find peace with this part of her life, and mine, as well. I read all 110 or so comments before posting my own:

I am one who has experienced joy with my mother since she was diagnosed with Alzheimer’s in 2005. It makes me sad that there are those who seem to begrudge us our joy. Believe me, I know I am lucky to experience joyful moments with her. They are rare, but occur more often now that she is settled into her anxiety-free life in a nursing home for dementia patients. Mom is obviously very unlucky. I don’t think anyone who can associate a tad of joy with Alzheimer’s is suggesting that this isn’t also the worst possible way for our loved ones to end their lives. But my mom, whose life was fraught with a variety of difficulties, is now more affectionate and loving than she has ever been. She tells me she loves me and that I am beautiful. Every time she says this, I say, “I take after you.” She doesn’t understand, but these affirming exchanges give her some joy, too. She doesn’t know who I am, but our companionship, and her sense that I am on her side no matter what, give her pleasure. Her smiles and laughter, her expressions of satisfaction while eating ice cream, her hand holding mine – these are simple things that make us both feel good. I would wish these same opportunities for joy to all caregivers of people with Alzheimer’s (and the patients, too, of course), but I know that is not the reality. Many caregivers’ and Alzheimer’s patients’ experiences are nothing but miserable, and for that I am sorry.

I doubt my comment will make anyone who is miserable feel better, but I thought the points were worth making.

9 comments so far

  1. Megan on

    I say yes too! My experience is similar to that of one of my friends, in that both of us had very unhappy, verbally abusive mothers, and could not be friends with them or feel safe around them until dementia took away the rough edges.

    I’ve had a beautiful relationship with my mother the last 2 years – something I never would’ve believed could happen after all the years of pain and misunderstanding. We’ve both acknowledged to the other how grateful we are that we finally were able to become friends, forgive each other, and enjoy spending so much time together in the present. We have a lot to catch up on.

    As I mentioned above, this was also true for a friend of mine. Of course, it’s bittersweet that it took a major disability for us to get to this point, but if it had never happened we both would have died with a hard cold place in our hearts regarding our relationship. I feel so grateful for these years that have cut through everything unimportant and distilled life to the bare basics. Even though dementia brings a new kind of suffering to my mom and I, in our case it would have been a much sadder family story without it.

  2. jennifer jayhawk on

    I love this post. I think it is fascinating to read about how this disease affects people different. Especially the family members. Unfortunately my Mom was a lovely woman and has now turned into a mean, angry woman.

  3. momsbrain on

    Megan: The experiences you and your friend have had are really interesting – because in such an unexpected way, the dementia didn’t just provide joy, but entirely changed your relationship. That is pretty incredible. I like how you describe that these years have “cut through everything unimportant and distilled life to the bare basics.” I enjoyed my relationship with Mom after I became an adult. I really could tell her anything, and we enjoyed each other. It was really the early years of the illness that took an unfortunate toll, which also solidified in my mind my leftover feelings of dissatisfaction about her mothering of us when we were young. But it is definitely all stripped away, and I have learned to forgive as well as to empathize with the difficulties she endured. Thanks for your comment.

    Jennifer: I think the transition you describe is unfortunately common. I wonder, though of course I really don’t much, if your mom has just enough awareness that something is wrong to make her very stressed, and therefore likely to lash out. I do hope she continues to adapt nicely to her in-home care. Thanks for visiting!

  4. jennifer jayhawk on

    Today my sons asked me if I would ever want to meet someone in person who’s blog I follow (I read a lot of blogs). I said, “Not really with the exception of Emily”.

    You are correct. My Mom has just enough mental awareness to make herself and my brothers and I miserable.

  5. momsbrain on

    Oh, Jennifer, that warms my heart. Thank you. You seem to live such a dynamic life – I might be too boring for you! The feeling is mutual. And how about that Kansas win over MIzzou today! 🙂 I was happy to see that.

  6. Lesley Austin on

    I thought your comment was a very good one, Emily, and tho’ it might not change anyone’s mind about their own situation, it might atleast let a little bit of light into their knowledge about all of this. It is so different for me, as my mom was always loving and giving and we had a wonderful relationship…now she is often rather sad and remote and sometimes anxious(tho’ we work hard to keep her feeling safe as is possible). So her Alz. hasn’t given our relationship joy..tho’ it sure is teaching me other spirit-things, when it is not just depressing me.

    But tho’ I don’t feel any positives from this for Mom or myself, I can certainly see them in other situations, like yours and Meghan’s and am glad you have that to point to in the midst of everything else that comes with this disease.

  7. patwhite67 on

    I loved this post. I too found peace with my mom during the mid to later stages of her disease. I, like you, am grateful to have had this time with my mother. We had our ups and downs as mother and daughter, and it really felt good to just be and let go of the past. Thank you for this beautiful post.

  8. momsbrain on

    Hi, Lesley – I know that for many, there are no positives. And I’m sorry your mom is sad and anxious. Those are emotions that are hard to witness, let alone feel. It’s a different journey for every caregiver. I started off so dreadfully negative that there was little direction for me to go in but toward the positive. And if Mom weren’t so easy-going, it would feel very different to be with her. Plus, I don’t have her in my home – that is an experience I can only try to imagine.

    Pat – I am relieved that I could let go of my hurts. It helps for me to age, and think about what Mom was putting up with when she was my age compared to what life has offered to me. She made some bad decisions, but I think she did the best she could.

  9. […] once engaged in a comment thread on a New York Times blog post about whether there could be joy with Alzheimer’s. Sure there […]

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