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Alann, Cris, and Mr. Shaikh

My father has Alzheimer’s disease. I am losing him in inches and pieces. It hurts. He is my hero and my mentor, and now I help him remember how to put on his clothes every morning.

My father has Alzheimer’s disease. There is a powerful genetic com­ponent to the disease, and I share a lot of my father’s risk factors, including bad triglycerides, a viral infection, and elevated cholesterol unaffected by diet. The odds are frighteningly high that I will someday get Alzheimer’s too. In 25 or 30 years, when it comes for me, maybe there will be a cure — but I can’t count on that.

My dad taught me how to learn from everything I see, no matter how hard it was. He was a professor of Human Anatomy and Physiology, and told me once that he was present when his mother died. He held her hand and told her how much he loved her. As she died, he catalogued her body’s shutdown, comparing it to what he’d read — because he was a scientist.

Alanna Shaikh's Family in the 1980sAnd so, now, I am learning from my father. It’s what he taught me to do. And what he’s teaching me now — his last lesson for me — is what it means to live with Alzheimer’s, and by extension, what I can do to get ready.

First, I am getting new hobbies. My dad is an intellectual. All his hobbies were brain hobbies — reading, chess, poker, bridge. Now he can’t follow them. He recognizes his beloved chess pieces, but he doesn’t remember how to play. Reading is too slow and too hard to be enjoyable, and he can’t play cards at all. He has no way to keep busy. So I’m learning hobbies that use my hands. I spend more time drawing, and I’m learning to knit. I want to teach my hands, so that when my mind can’t do it, my fingers still can.

Second, I’m living my life as fully as possible. Dad got knocked out of his game too soon, but he had achieved enough for a long, long life. The work he loved, and the impact he had on his students — it was more than most people do in their lives. His contribution to our world does not fall short, even if he ran out of time. I am trying to do the same thing — to give as much as I can to the people around me, to work and think and create and contribute as much as I possibly can, in case my time ends early.

The most important thing I’ve learned from my father: love. My father built his life around the people he cared about. Me, my mom, and my brother were the center of his world. For his birthday, he’d tell us to get things for ourselves because he liked seeing us happy — and he actually meant it. But we weren’t the only ones he loved. He loved the students he taught, he loved his friends, and he loved our extended family — both his own and my mother’s.

Mr. Shaikh and His Grandson, ZachNow, with so little left of him, my father still has his love. Seeing his wife, his children, and his grandson brings him joy. He can sit just watching my son read a book. Simply living with his family, my dad can find happiness.

The people he cared about through his life still remember my father. We get postcards, letters, the occasional package. And he is still finding new people to care about; he hasn’t lost his love for people. He likes it when we have guests over. He still flirts with all my female friends. He loves his aide and the omelets she makes him every morning.

I have never loved people like my dad did. He had patience and affection for everyone — for people who told boring stories repeatedly, for people I thought were stupid, for people who were afraid of everything, for people totally full of themselves or so shy they could hardly talk. Dad loved people I could barely stand to talk to. He used to ask me to show patience, tolerance, compassion — and I’d promise to try — with no real sincerity.

So now I am trying to learn my biggest lesson from my dad, the lesson I am trying to live every single day. I’m finding people to love; I’m finding things to love in people. I am trying to love people like my dad always did. I am building my capacity for love now, so it can sustain me later.

And if, in the end, like my father, there is nothing left of me but my love, that won’t be a tragedy. It will be my victory.


Alanna ShaikhAlanna Shaikh writes about international development and global health issues. We follow her at Blood and Milk and on Twitter; this tweet prompted us to reach out to her.


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35 Comments

My father also had Alzheimer's. It is devastating. The hardest part for me was when his personality changed, and he would lose patience with us including his young grandchildren or say very off color things to us.
We, children of Alzhemier's, like Ms. Shaikh, do fear that we will get it eventually. My concern is that I will become a burden to my spouse. I have seen him in many caretaking situations from when he was a patient, understanding father to when he helped his mother accept her pending death from kidney cancer and now how he so beautifully treats his 92 year old aunt who needs much help. I know he will do the same for me if it comes to that, but I so wish for so many reasons that it won't.
Alanna, my mother joined a Spouses of Alzheimer's group when she was coping with and managing our father, her husband. Even though her children were very supportive, this group was so beneficial in so many ways. Do not hestitate to seek the help of peers and experts in the field.
Take care of yourself and bless you.

What a beautiful tribute to your father. I've been pondering the Gratefulness.com quote of the day by Joseph Campbell and perhaps it is apropos here: We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.
My Dad is having some tests run at the hospital after a fainting episode on Christmas Day. Thank you for giving me room to think about all he has taught and given me through telling about your Dad.

What a lovely tribute to your father and to love. Thank you for sharing your story.

...you are more like your dad than you realize. My heart aches for you, but you have been given a great gift in taking care of your father. Breathe and love through it - one day you will turn around and he will be gone. But then, he will be all around you, supporting and loving you from above. You already ARE victorious. God bless!

I would like to offer my agreement with Sherri and to offer my encouragements. To love is our greatest gift to others, and it is the most wonderful gift that we can receive, too. In our moments, we are working through this lesson. As someone who has worked with dementia patients for many years, I appreciated this episode of Speaking of Faith. Dr. Dienstag's gentle voice bespeaks the comfort that comes from loving others and being loved by them. To cultivate a life of compassion: That's the thing! Please, allow me to suggest the work of Joyce Simard for folks who are interested in more about loving in Alzheimer's and related dementia. Peace, Lauren Smerglia Seifert

I also have shared the experience of having alzheimer's rob me of the personality & knowledge of a loved one. She was my grandmother on my mom's side & she was always a mystery to me. You see, she already was in the thick of her sickness when I met her but I made it my business to pierce the cloud of confusion & forgetfullness & touch the soul behind the sickness. In he lucid moments she was a loving, witty, & very funny lady. She had a high regard for life & felt bless by the divine for her short time on earth. She taught me that it is best to live in the present moment intensely and squeeze the best out of the fruit of life. A.R.

Thank you so much for sharing your story. It meant so much to me, today.

I first met Alanna's father when I was 18 - I will be 56 soon. Everything Alanna shared about her Dad's humanity is true. He has been teacher, mentor, and the greatest friend I have ever known - and there are many other people who feel as I do. His life is a life well lived - and he is made immortal by the contributions he made to others and the way they carry his gentle, wise, and loving influence forward. Alanna shares many of her father's fine traits.

A wonderful, heartfelt tribute to your father. I hope some day Michael has as nice to say about me as you have for your father. I remember when I was in my early 20's and realized that my father wasn't invincible. Now in my early 60's I begin to see my own gradual (very gradual, hopefully) decline. Erik Erikson had it right in his last stage in life of Integrity vs. Despair. One must just keep moving forward and remain positive and productive even as abilities and interests shift. Your intellectual curiosity and caring for others will continue, but there is also satisfaction in concrete achievements such as woodworking or knitting. Jerry (simoogle)

I have no words to express the mix of emotions I feel after reading this. I wish I had met your dad and learnt more about loving people. To be loved is great feeling but to love is the ultimate form of obtaining joy. I wish you and your dad and your family the courage and the strength to go this difficult phase.

What a lovely learning tribute to those you love. I have never met you or your father, but I am a geriatric nurse and I have worked with lovely people, like your dad, for a while. It can be heartbreaking, even to strangers, to see the confusion they seem to feel when they cannot recognize something or someone and yet in their heart, they know it should be familiar. Stay close and learn....bring comfort to yourself and your dad. He is blessed to have you.

During my father's journey with AD I found some measure of comfort in considering that while he wasn't able to share what was going on in his head something was taking place in his brain. It was too hard to feel that his disposition which was quite pleasant in his final year wasn't related to some processes, inaccessible to the rest of us that they were. This may have been a huge denial but resembled for me the communications problems that one has with people who speak a non-written language from an isolated culture. His pleasant disposition during his final year as treasured more perhaps because of the angry and combative phase he went through before the wandering, searching for his boyhood home phase both of which were so worrisome.
I agree with the idea of preparing for my own AD altho when offered a chance to participate in a blood test trial I declined, not wanting to know more concretely which might lie ahead.
Thanks for this lovely and insightful reflection.

Alanna,
As one who has worked for over 20 years with those such as your beloved Dad, I know the grace, and anguish, of those standing on the outside. Blessings, my friend. Keep a light heart, and the love comes pouring in. Your Dad is a fortunate man, and he knows it!

Peace and Light,
Holly Freewynn

I admire your Dad, for his beliefs and how he lived his life...LOVE is the answer.
I too have a Mother with Alzheimer's...who was a narcissist and today seems lost in herself....as she always was.
You are very fortunate to have had and still have , this beautiful relationship with your Dad.

I disagree; one should kill oneself before losing oneself; there lies dignity and kindness to those we love. I might not be able to do that, as I am a terrible coward, but at least I still know what's right.

Wesley,

I am sad for you. When one of my elderly relatives had dementia and sometimes wasn't 'there', it was still a blessing for us to have her with us.

Obviously, her father was a good man and to take care of a loved one in their time of need is a blessing in itself.

- fpfj

Wesley, I hated you for a long time for leaving this comment. Thus the six month delay in response. But then I realized that it is exactly something my dad would have said ten years ago. S

My answer to you, and to my dad if I could give it - no. Losing him in his prime of life would not have been a kindness. As he's ebbed away it has give me time to love him and to say goodbye. And, as I said, to learn what I need to know for my own future. I would not give that up.

And as for dignity, fuck it. It's an over-rated nonsense virtue.

My father also would have wanted to be "hit by a truck" (his preferred method of leaving us) if he lost his intellectual capacity, the thing he built his identity around.  And now he has lost it, but he's also lost the ability to care.  There's a sweetness and a vulnerability about him that was missing all the years when he was aggressive, angry, disdainful and intellectual.  Dignity is not overrated, but it how OTHERS treat you, not present in you.  You can carry yourself well or poorly, but others choose whether or not to give you the respect that everyone deserves.  My father now lives in a retirement community where the staff treats everyone with kindness and respect, regardless of their behavior.  He is lucky to have the financial means to buy good care.  

I am not ready to lose him.  As challenging as his personality has always been, he was wise about many things and always a good story teller.  Like Alanna, I fear I will be next.  I scrutinize my life and my behavior and try to do things that will make things easier for my children if that time comes.  I practice gratitude and am trying to reach out in love.  I am pretty sure that I will also lose the ability to be critical, but I do want to be nicer to my kids than my father was to us.  

My children grew up with a Grandmother who was gradually declining. She experienced frustration as she lost capabilities along the way. But I treasure the time my children had with her - they developed so much patience, and learned to love people who couldn't do something back for them. I strongly believe it has made them more caring people, and there fore was a gift of Mom's later years to my family. Yes, it was sad, but we found ways to laugh together as well and we cherish those time tremendously.

this column was helpful. In April, I lost my grandmother to alzheimers. My great grandparents that were also dear to me were lost to this disease. I am thinking I need to prepare myself when I will disappear. I have a lump in my throat thinking of how to go forward.

Glad to find this. I am following a thought pattern relating hormones, inflammation and behavior/brain issues. But also, in watching my family struggle with alzheimer's, if you look at the areas of the brain affected - it leaves you with your animal brain and any deep habitual patterns. So your finding new hobbies makes so much sense - to develop new thought patterns and habits - ones that will be constructive and not destructive. Like meditating and calming and not worrying so that those habits do not prevail into old age.

My mother had dementia for many, many years. She was a crocheter. She had made an afghan for nearly every child and grand child. When her first great grandchild was about to be born, she made her last one - a baby blanket. It was probably 18" wide on one end, and 30" wide on the other. But it did the job!

She had several years living after that, and later lost recognition of us (but she once referred to me as the "nice lady at the end of the bed". After a few years of exasperation at losing abilities, she got to the point that she didn't seem to realize what she had lost, or a point of acceptance, and her life was happy if not full in our idea of a full life.

Hmm, I may just have to write more about her, as I too struggle with how to cope if and/or before I experience dementia myself.

Alzheimer's disease may share common symptoms but there is a marked
difference between these two problems of aging. Everyone as they age
may lose their keys and may have some problems remembering facts and
figures.

breathtakingly beautiful. I thank you from the bottom of my heart for this piece.  Both of my parents had Alzheimers so I know of which you right and share your concerns about the future.  Best to you.  Namaste'.

Beautiful, Alanna. I too have been losing my father in increments, and I've said goodbye (in my heart and mind) more than once over the past decade of his illness, when I've left him to return to my home, far away from where he lives. It's painful and sad, but not what I would call tragic. He will be 85 next month and has lived a full life of adventure and intellectual pursuit. I know what you mean about a person getting stripped down to an emotional core. My father's persona is perhaps less filled with peace and love than yours, but he is much less complicated than when he was young and vital. He has become sweet in a way that wasn't always a given. I, too, have learned a lot from the process of letting go of my dad, and I hope I'm setting an example of acceptance for the cycle of life for my young adult children. Still, I do feel profoundly affected by the demise of a vibrant man, but know that we all come to that place in one way or another in our own time. Peace to you and your family.

My mother has Alzheimer’s disease & also continues to be very loving despite being diminished in
other ways that I use to measure quality of life.  Some patients of
Alzheimer's seem to be robbed of all that makes them recognizable.  I
remind myself that I am blessed to still be able to know my mother by
her ready smile & affectionate ways.  You are right...love is the
best measure of the
quality of a life.  Thank you for sharing your experience & outlook. 

What an amazing and beautiful passage.  A true testament to love and its power.  Thank you Alana and keep writing!

My beloved Aunt had Alzheimer's.  At some point she entered assisted living; at a later point we supported my Uncle, her brother, obtaining guardianship.  Toward the end, she was reduced to chanting rhythmic senseless syllables....At one of the early stages, when she was in and out of dementia, we took a long walk outdoors on a blustery cold day.  She said to me, "you know, there will come a day when your old Aunty won't remember your name."  I said, "that's ok, i will come and visit you anyhow."  "Really?" she asked.  "I promise!" I said.  And I meant it, because i had watched her spend years and years visiting the woman who had raised her -- a nanny to motherless children -- who spent her last years in a home, not recognizing her own visitors.

I came to think of that period of transition - when my Aunt was still on this side of the divide, but was aware of the large cognitive gaps occurring -- as "the tunnel" between the light and the dark. I saw her fear of dark - and as she progressed, some of her well-hidden deeper fears and anxieties began to bubble up to the surface.  I spent time in there trying to go straight to her core fears and address them -- I felt that the biggest gift I could give her was to relieve her of baggage as she entered the dark tunnel. We dredged up some old issues, and i told her it was all ok, we would take care of everything...she could relax and move on.

The lesson I took away from this:  yes, focus on the love. Promise to be there, and fulfill the promise. But also, for me:  the hard work of growing up and "getting right with the world" in the spiritual sense, in the interpersonal sense, in the logistical sense of paying bills and taking care of details -- has got to be done before I face my own dark tunnel.  Because when i face the dark i want to have left behind as many of my own fears, regrets, monsters, and pockets of shame as i possible can.  I want to travel light, with curiosity, gentleness and generous spirit.  I want to be able to love and appreciate the people who pass by, whether i recognize them or not, be they nieces or nurses aides....And I came to see all of this as one of the goals of my own spiritual practice.

It is indeed a hard disease, and i send you patience and strength and gratitude for sharing your own lessons.

This was beautiful and inspiring--thank you.

I took care of my grandfather when he had Alzheimer's, I'm so sorry your going through it with your father. I saw this video not to long ago, I hope it can help your father.
http://www.youtube.com/watch?v...

This is amazing! It brought tears to my eyes! I will adopt it as my mantra!

Thank you for this piece, Alanna.

I am extremely amazed i have come across your website.

Alanna,  I just discovered your writing on a site that had nothing to do with Alzheimers.  What a gift it is for me.  I am the spouse and I immediately forwarded you beautiful thoughts to my children.  You truly have a loving warmth and understanding and I assume your parents shared this with you.  My prayers and wishes are for you to never inherit this disease, and always believe how incredibly fortunate your Dad is to have you as his daughter.

Alanna...remember the Anderson's who lived next to the Siegels? No contact with you guys for a long time but wanted to tell you how much I enjoyed this piece..thanks for sharing with everyone. It's been a long time but the memories we have of our time with your family is so fresh. The thing that stands out the most about your parents is how generous they were and that they were always laughing...and, clearning out my sinuses with curry sauce! God Bless.