“Notice” the Changes

(Time to join up with Kate Motaung’s Five-Minute Friday group and write about her word of the week:  Notice.  OK, so I wrote 5 minutes, and then 5 more and then ….. )

Alzheimer’s is the kind of slow, insidious disease that creeps along day after day, week after week, year after year,  silently stealing away brain cell after brain cell, creating little changes that only those around you notice at first.

I recall trying to cover for Bo in the early days.  I was always on high alert when we were around people, had a technique for inserting people’s names so he would know who they were, and I’d move in aggressively to greet people I didn’t know, saying  my name so Bo wouldn’t have to do any introducing.    I would finish ideas or move him away from something that I perceived to be “dangerous” (i.e., would reveal his condition)   and started taking over conversations in which he would  have been the leader , even with close friends.

And watching  his mannerisms and movements,  I hovered around him.  This wasn’t the couple we were; we always gave one another a lot of space, and  I would hear the pleasant banter and his infectious laugh  across the room where he was  knee deep in political or news conversations.  But roles had to be reversed.   I recall feeling responsible for keeping conversations going, for contributing to dinner banter which I would traditionally have left to him.  If I allowed  no blank spaces in the conversation, surely the others wouldn’t notice Bo.

And as I noticed changes,  I made accommodations —  calendars and checklists and  white boards on the kitchen table and  the door into the  garage so I could write reminders to him.  Things like: “I went to the grocery store — 10 am” or ” We are going to see Mother at 1.”  I left these notes long after I knew that he didn’t read them because they made me feel better.  I started crossing off the days of the calendar and calling too often  after he had stopped calling me and wasn’t noticing  my notes.

I watched life  become flatter,  duller for him as  enthusiasm left and interest in hobbies and the world  waned.  He became unwilling to be in groups of people and didn’t want me to invite people to the house.  Going on vacation became an impossibility as he fretted,  even had nightmares, worried about packing,  couldn’t sleep.  It was too scary for him, I think.

But when I started admitting to everyone that he had Alzheimer’s, it was very freeing for me.    I realized I hadn’t wanted people to know because they would see him differently, they’d see him as sick,  not  as the man he was, but someone weaker, to be careful around.  So when I finally started telling people,  I was able to relax because I realized that they would also protect him, and by that time, he needed it. My heart broke.

And  saddest of all, this would change the course of some of our friendships.  Two of our closest couples — friends since college — stopped calling.   They literally disappeared from our lives when they realized the situation.  People often make excuses for others’ behavior by explaining that “they just couldn’t handle it.”  I don’t believe that for one minute.

I have learned a lot  about how to be a friend to others through the many kindnesses people have shown us  — some with whom we weren’t even close before , and  I am constantly surprised by the gift of their friendship.     I regret many opportunities I missed over the years to be as good a friend. It’s easier to do nothing.  Life goes on, and helping with the illness slows you down.  Some people don’t want to be slowed down.



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13 Responses to “Notice” the Changes

  1. Arleen Stolzenberger says:

    Well said. Completely understand handling. You never know how people will react. It’s a shame when friends turn away. I don’t understand this but it seems they don’t know how to react. I always remember my grandmother saying to me that “when the chips are down, this is when you find your true friends”. You all are in our thoughts.

  2. Maureen says:

    Love this post for many reasons, it’s so true!!!

  3. Mary Smith says:

    Very well said on lots of levels. What you say about watching Bo’s life become flatter and duller rings so true about seeing all dad’s enthusiasm wane. He was a keen golfer, read widely, loved photography but bit by bit all his interests disappeared.
    I’ve also been pleasantly surprised by the kindness and support of some of his friends (and mine) and totally taken aback by the seemingly uncaring attitude of others. I think some people really don’t know how to deal with the reality of seeing dad with dementia. Some talk about him in the past tense!

  4. Pamela Fisk says:

    Every time we meet, Nancy, I notice the love you have for Boris.
    I notice, too, how caring you are for others.
    You are my hero.


  5. Paula Kaye says:

    Hello Nancy…you hit the nail on the head with all of this. Richard still loved to have people come over…he just wanted me to do all the talking. Of course he didn’t have Alzheimer’s. He had Lewy Body dementia. But the part about friends that disappear is so true and so heartbreaking. Just when you need them the most…

  6. amypboyd says:

    What beautiful advise to us that may have to face being a caregiver one day. Thanks for sharing.

  7. moreatforty says:

    So painfully true. A couple of my siblings would come over and not even go out to see my dad (he was confined to a hospital bed in my parent’s family room for many months). It was tough to visit. I had to really resolve to deal with it emotionally. He wasn’t there, really for the last year, almost year and a half – just the shell of him. I don’t know how my mom did it for all those months, not terribly healthy herself. But, this disease is cruel and painful and truly HARD. I am glad you had a few friends who were able to be there for you. Thanks for sharing.

  8. rosemary says:

    so painfully true……

  9. Dianne says:

    Nancy, I Remember “best friends” abandoning me when I became divorced. Many alone holidays doing something entirely different so it wouldn’t hurt so much. Life lessons….

  10. iwillbloom says:

    Oh my, what a beautiful, honest, heartfelt post. I’m so sorry to hear your friends abandoned you (it’s happened to me, with several people I thought were very good friends, during recent events in my own life) – the experience made me reflect on the fact that I should have been a better friend to others, perhaps, when I had the chance……life is beautiful, isn’t it? Even in the hard times (especially in the hard times) it teaches us the things we need to know, to be able to grow and enjoy it all the more fully. [Headed over from FMF]

  11. thom sweeney says:

    Wow. Did THIS ever resonate with me. My first with losing fiends was when we moved from Moorestown. The invitations stopped COMPLETELY. I mean, at that point WE hadn’t changed, we had merely changed ADDRESSES. But little by little after Helen’s illness progressed, we would meet old friends somewhere by chance, and it was always the same response: “We MUST get together. I’ll call….” So, well intentioned though they may have been ,I’m sure, they just couldn’t make that call.
    If they only knew that Helen is the same sweet person they once knew….she’s just not communicative any more. I enjoy being with my old friends just like I always have. But I have found that I’m too weak to educate all those people, and have come to rely on our very closest friends to make life seem like it used to…in the good old days.

  12. kategresham says:

    Various things have reminded me to take responsibility, not let things slide and be the best friend and support I can- I haven’t always done this, so your post is timely. I can only admire your love and care for your husband, as I have not yet had any close personal experience with my loved ones, however…I am learning from you and I am so grateful for your sharing your journey so honestly. Thank you.

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