When It's Too Late to Say Thank You
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When It's Too Late to Say Thank You

When It's Too Late to Say Thank You

Alzheimer's has turned my mother into a stranger.

by

What is the greatest kindness one can perform? According to Jewish tradition, it's preparing the dead for burial. A dead person cannot thank you for the services you perform, nor gratify your ego. There is no payback. While most of us enjoy doing kindness for others, ultimately we want our good deeds validated, noticed, or appreciated.

I wonder: does caring 24/7 for an elderly parent stricken with Alzheimer's count as caring for the living dead? Truthfully, I have found it to be a mostly thankless task that is emotionally and physically exhausting. Although I am pretty sure I’ve got the mitzvah of honoring a parent mostly covered, it seems like I’m caring more for a stranger than a parent.

Until Alzheimer's, my mother was never physically, verbally or emotionally abusive to me. Some days she doesn’t remember my name. Yesterday, a new milestone: she no longer remembers that I am her daughter.

This angry, fearful, and depressed person is not my mother.

My mother, so meticulous about personal hygiene and always dressed so smartly, cannot be coerced to take a shower or wear clean, matching clothes. Once a kid magnet, she often detests being in the same room with her grandchildren and great-grandchildren and isn't shy in telling them so (one small granddaughter was so traumatized that she now cries and shakes with fear every time she comes to visit, so I rarely get to see her anymore in my home). This angry, fearful, and depressed person is not my mother -- she is a stranger.

I love to cook; it is not unusual for me to prepare and serve meals for 25 people. How ironic that now one of the most stressful parts of my day is meal planning for just one person. So much time, thought and expense goes into meal preparation for my mother. I strive for variety, visual appeal and nutrition. Even a single skipped meal could result in disaster for my mother: nausea, weakness, mood changes or even dehydration.

First, one must be a whiz at anticipating needs -- when my mother is hungry she wants to eat right now. But two minutes after dinner, she may forget she has eaten and complain that she’s being starved -- so you start over again. A menu she found so delicious days or even hours ago now “looks like it came out of the garbage can,” is “rotten,” has “bugs in it,” is “too hot” or "too cold," is touching another food thereby rendering the entire meal undesirable, is too salty, not salty enough, too seasoned, too flat -- and didn’t I “ever learn to cook?”

She may be truly hungry but will claim, “I am not the least bit hungry” and after tantrums, coercion and bribes, she grudgingly eats -- only to gobble up the entire meal. A breakfast that would be eaten by a healthy person in 15 minutes could take my mother an hour to finish.

I wish I could say I have taken on this enormous responsibility with a feeling of love and joy. I am trying but I’m just not there yet. I may not be happy with my mother’s affliction, but I’m not angry at God. I don’t ask, Why me? But I do ask at regular intervals, How can I better understand what God wants from me?

Mirror Image

Recently my eldest daughter gave birth to her sixth child; the eldest is only eight years old. After arranging for respite care for my mother (thanks to my husband, married children and a caretaker) I traveled to be with my daughter and grandchildren to help out for a few days.

Mealtime was perhaps the most difficult time of the day. One kid wouldn’t eat if different foods touched on the same plate. Another kid thought the food was too hot or too cold. Another became very crabby when not served right now. One kid said the food was too spicy, another said it was too boring. Another said the food looked like worms and eyeballs (but happily ate it anyway). One kid refused to eat altogether. One took two minutes to eat; a dawdler took 30 minutes to eat the same meal after much coaxing. The spills and stained clothes! The noise and occasional sibling rivalry!

It struck me that their misbehavior mirrored my mother’s. Yet when the children acted out, I hadn’t felt tense or upset -- there was joy and nachas. Is it not ironic that when a baby is unresponsive or soils himself, we still find him utterly adorable? Sadly, the same cannot be said of identical behavior exhibited by an elderly person. As I ran from child to child, kissing a boo-boo, providing a meal, sorting the laundry, cleaning a spill -- the things all mothers around the world do -- rhetorically I thought, Where is the gratitude? The nature of a child is narcissistic, and expectation rules over appreciation. And we love them unconditionally.

Why did I find it so difficult to do this with my mother?

That’s when my revelation occurred: What does God want from me?

If we are created in His image and He is our Father, are we not like the unappreciative child? We take for granted the “regular” kindnesses shown to us daily -- that there is food to eat, and it’s mostly tasty! That we have clothes to wear, and they are (mostly) clean and attractive! We have a room to call our own, and a bed to sleep in!

Did I thank her properly for enduring all the sleepless nights I caused when under her care?

But if any of these things were denied us, even for a short period, we would be despondent because we have come to expect them, just as much as the air we breathe and the sun that rises (more things to be grateful for!). The daily blessings we recite in the morning are a vehicle to show gratitude to God. They help us to be aware of His kindness and not take any part of our lives for granted. It raises us above a child’s sense of entitlement and encourages us to live a conscious -- and conscientious -- life. And imperfect as we are, God loves us unconditionally.

If the harsh criticism I receive from my mother, despite my best efforts in taking care of her, makes my ears burn and my heart sick with grief and frustration, I must look at myself and ask: did I thank her properly for enduring all the sleepless nights I caused when under her care? Did I thank her for providing me with daily meals and for laundering my clothes? Helping me with homework? Advising and encouraging me?

Most of us could never run out of things for which to thank our parents. Now that my mother is slowly becoming an empty vessel, it is tragically too late for me to make proper amends. Verbally recognizing her past kindnesses would be met with confusion and incomprehension.

But it is not too late to show my appreciation to God. When I wake up in the morning, I say modeh ani (I gratefully thank You) with newfound conviction. I say blessings with more sincerity, and I have a greater appreciation for things large and small. Ironically, my gratitude list grows as quickly as my mother’s decline.

Published: November 28, 2009


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Visitor Comments: 33

(33) Steve, September 9, 2010 10:07 PM

Such a great article

On this New Year, I have a way to rationalize interacting with my mother who also has alzheimers. I experienced similar feeling and just gave up interacting with her. My situation is a little more complex because my mother married an alchoholic goy and had another son when I was 14. This monkey wrench situation caused me not to be in a real Judaic family environment. As a father I am very committed to my son's Judaic life and would never want to make him feel the way I did. All this makes my relationship with my mother extremely complicated and unpleasant (even to just say hello). I wish I could just do what you do for your mother but I'm probably alot more selfish than you are I just want to feel happy and relaxed and peaceful every day and not rock the boat.. Anyway, thank you so much for sharing this. I know what to do now but I don;t think I'll do it because its a real hassle.

(32) Sharon Kerr, December 16, 2009 12:57 AM

In memory of my father

This brings tears to my eyes and the pain when my dad passed away. I moved to a small town and had a 2 bedroom bungalow built with my dad in mind. I had an intuition that he would be moving in with me. I was in the house 3 months when my dad said, I'm moving to Sharon's. I put a border in his room and thought that's all there is to it. I didn't realize how long it took my dad to shave and wash in the morning, and it was embarassing to ask my dad if I could possibly use the washroom. After ten minutes or so, my dad would come out. It was then I realized I would need another washroom. I made the plans for a four piece washroom, so I wouldn't have to bother my dad. I got a building permit, and learned how to read a measuring tape and built a bathroom. What escalated from there was I designed a two bedroom apartment and built it myself. I was blessed with a gift of building and it came naturally. In the 4th year I noticed changes in my dad and he started to get dementia and sometimes called me his mother and other things. When I felt angry and hurt I would then get angry at myself for being cranky. I would then hug my dad and tell him how much I loved him, and he would cry and tell me he loved me too. This happened more often near the end. In December 9th I put dad in the hospital for he had chest pain. And on December 15, 2004 I had put head down on my dad's bed and he put his hand on my head, just like he used to do when I was a little girl. His breathing became extremely labored and I prayed out loud to Ha Shem and asked that He would be merciful and not let my dad suffer. At that very moment my father took his last breath. My dad passed away minutes after chanukah had ended. So as this Chanukah ends I will light a candle for my beloved father and thank my heavenly Father for His loving kindness and mercy.

(31) Anonymous, December 9, 2009 10:47 AM

Please tell Sarah Bloomberg that I opened her article at the perfect time after a particularly stressful shabbes with my parents. Although they have an aid 24/7 I am with them daily-therapy, doctors. making sure they are eating (and not choking on each bite) etc. Thanks for the article, the focus, and making me rea;lize I am not alone. Have a great day and a rededicated and happy chanukah

(30) Esther, December 8, 2009 5:18 PM

not loshan hara

More people than you know are dealing or have dealt with the same situation, including myself. I feel that it is definitely NOT loshan hara to talk about incidents that are going on with your mother. There almost seems to be an element of shame attached to dementia or Alzheimers, which is horrible, because it makes what one is going through all the worse. I also used to hesitate to say anything when friends would ask "how is your mother", but eventually the stress and pain became so unbearable, that I would start telling them actual details. To my surprise, what I found, was that the people I was talking to would then open up about similar situations in their lives with their parents. It was almost as if they realized that there actually is someone else who was going through the same thing, and they could now openly talk about it as well. Speaking with others who may have the same situation not only helps you, rather than keeping all your feeling bottled up, but it might also provide you with advice and suggestions .This will help you tremendously, and take away the feeling of isolation you may have. Definitely not loshan hara, but exactly the opposite, pikuach nefesh. Do not feel at all guilty about talking to people. I greatly admire you for what you are doing for your mother and mother -in-law. You must be a very special person.

(29) Anonymous, December 6, 2009 10:18 AM

What a wonderful article about an attentive daughter caring for her mother stricken with Alzheimer's. Thank you for the inspiring articles and e-mails I receive from you. Each one is truly appreciated.

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