Sunday, May 9, 2010


Watching my mother inexorably displaced by Alzheimer's disease, layer by layer of her essence peeled away, regressing, confusing, misunderstanding, becoming childlike and then less, is a shared painful slow death.

Once bright and intelligent, a lover of word play and shaggy dog stories, counsellor to my dad in his political career, writer of speeches, member of boards, she's become, now, mostly none of that. Rarely a flash of a joke appears, so randomly that it's hard to know if it was intended. As her short-term memory disappeared, for a time there was still most of the rest; I could ignore the fact that she never remembered our visits because while we were there, it was clear it gave her pleasure. "In the moment" took on its literal meaning. I could make her laugh, sometimes to tears, and we could enjoy recalling events and people of the past. She loved looking at pictures. If we ran out of things to talk about, we could just start over, and it was all new.

Now, though, it mostly confuses her. And although she still recognizes us -- and fawns child-like affection on my wife -- she fails to understand most of what we're saying, and that upsets her. Recently, it brought her to tears, and for the first time I thought our presence was not only not pleasurable, but harmful.

She has stuffed animals on the sill. If you pick them up and wiggle their limbs, she'll talk to them like a little child.

It's about a two-hundred-thirty mile drive, and we make it about once a month, staying for two or three days. The place in which she dwells (hard to call it living) is as good as it gets, I'd guess. Caring and cheerful staff, all seeming to know her well. If "knowing" and "her" and "well" have any meaning. I call her every weekend because we've hired a companion for those days, and she'll pick up the phone for her, and explain what to do. Of late, Mom's response is unpredictable. Sometimes she barely gets it, will stop talking, let the phone drift, and after calling "Mom... mom... can you hear me ... are you there..." I'll just hang up the phone. The companion, often, leaves the room once she'd gotten Mom talking, so there's nothing else to do.

When we do talk, it's about the weather, birds, the color of my lawn. And then, the weather, birds, the color of my lawn. If she forms more than a handful of words, they usually take her someplace where she can no longer follow. I'll search for a way back for her, but if I find one that makes any sense she's lost the path anyway, and we'll get back to the weather.

She had chest pain the other day, they tell me. Took three nitros before it went away, and they almost took her to the ER. Why?


  1. This past month I turned 67 years old. Today is Mother’s day in America. Mother’s are the strongest and deepest bonds we experience in life. They are our first and lasting imprint on our minds, auditory, visual and sensory. Fathers are important, however Mothers are crucial to sons, and daughters.

    My mother passed away five years ago at age 89. Her last three years were spent in an assisted living facility and towards the end she knew not my brother or myself. She became less lucid as the end approached. My brother lived near her and made sure her needs were met as to where she lived and he became the executor for her personal financial affairs. I lived some distance from her and had many of my own responsibilities, a disabled wife and very ill son. I will never forgive myself for not making time for her.

    During the last few years of her life I would speak with her on Mother’s day and apologize for not being there with her. She would respond saying it’s okay you have your own family now, it’s enough you remembered me…it’s enough…..

    It’s enough rings in my ears to this day. No, it was never enough and that clarified itself on these past mother’s day when my first thought was to call her. It was not a thought, it was a deep emotional reflex, lingering throughout the day.

    Recent research has indicated that although patients with Alzheimer's Disease, have a lasting emotional response to 'visits' even if they have no recollection of a visit or phone call.

    Sid, you are a great son.

  2. REally really Sad - but lovely too Sid - the lady or man that turned 67 was right - you are a good son and even thou it's painful you're doing the right thing - thing is thou that you're not cognizant of that fact because your in the situation and bathing in all these feelings - plus the exhaustion of driving that kind of k's (or miles as you say) to see your mum. When she's gone you'll be thankful that you made the effort and put up with all the other stuff - I wonder if you could draw on an analogy that just occured to me...remember when you were a baby? No of course you don't - but I am sure your mum had the same frustration when you cried and couldn't speak and looked unwell or whatever she thought you would have looked like and in light of that you grew up healthy and turned out ok (probably a bit more than ok as you went to med school!) Well now it's your turn and thou you won't have the joy of watching your mum grow up you are there for her. Treasure the moments even thou they're hard.
    Take care
    from new zealand

  3. I never knew them, myself, but my paternal grandmother's mother and her mother before her both lost their mind in their old age. I've been told that my grandmother feared that fate herself, so in a perverse sense it was a blessing that cancer took her before dementia could.

    She was somewhat confused towards the end - I can barely remember, myself, though - but that may have been due to the medication.

    Indeed, you are a great son.

  4. A touching tribute to your mother, Sid.

    Life is a terminal disease. When you get past the halfway point, maybe age 40 if you're lucky, you begin to see the "temporaryness" of it all.

    (Maybe that should be spelled with an "i" like loneliness.)

  5. Dr S - I understand and I am so sorry. You are a good son and no doubt she was very proud of you..and I am sure is in her spirit still... and perhaps in moments you don't see.

    Can you ask the person you *hired* to stay with her until the conversation is finished? My mother was in a nursing home and I posted a sign over her phone asking anyone to pick up her phone, call me and assist her with the call. Only one person did. Her day aide and she did at least a couple of times a week and stayed with her and helped her keep the phone up to her mouth and sometimes she and I would chat and I would ask about Mom. She just called me Sunday to see how I was, but we weren't home. I admit I have not returned the call as yet because it just hurts ..for many reasons ..but I will. Other times ..I had to call the desk (hardly answered their phones ..then ask them to go to Mom's room and pick up phone when I rang ..but they did not stay with her... and so she couldn't talk long. I know it hurts... and is frustrating. It sounds like you do a lot for her. I still think it is better to see her... not just for her ..but you too.

    Health Train Express... it sounds like you had your hands full... and being your mother ..she would understand that. I understand feeling guilt and I think grief with guilt is toxic. I could feel it and it's important to let it go because they are in a better place ..not suffering. Honestly ..I am still struggling with it. We had a complicated relationship. We loved each other very much. Death has a way of accentuating missed opportunities and the shoulda, woulda, couldas. But is busy can be complicated and sometimes things get in the way, I just wish we had the same clarity when everything is still good.

    And sometimes ..we really are doing our best at the time. It may not be the best by someone else's standards or even ours given different circumstances ..but sometimes ..even when we feel we failed was our best at the time.

    I really understand Dr S and Health Train Express. And HTE - our mothers would not want us to beat ourselves up and we would not want our children too.

    My m-i-l is one of the sweetest people on the planet and she treated her mother so well ..never could do enough for her ..very loving relationship and when I expressed my feeling guilt over mom ..she told me she felt guilt about things she did regarding anger as a young girl. She'd get mad and not talk to her mother. i was floored that she felt guilt over something so seemingly small and she was a teenager and in her 20s and now she is 80. I guess the finality of death of a loved one sharpens one's insight for what is most important.

    For anyone reading this that may have had a difficult relationship, but then felt guilt after the loved one's death..a counselor once told me that when someone with a *difficult* personality dies ..often times the people that loved them, but had a difficult time with the person ..will often forget the negative things that person did, yet magnify their own mistakes with the person..thus taking on the burden of additional guilt they should not have.


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