When the memory loss is firmly in place, and you do not know if your loved one really knows who you are, there can be an impulse to stay away because it is so frustrating and painful to be cut off from someone you loved for so long. Guilt at whatever form your abandonment takes (fewer visits, fewer phones calls, etc.) works its way in to claim its place with the other pain. Sometimes it is hard to tell which hurts more. Then you might get the feeling like you are just waiting for death to come and relieve the sufferer, and the sufferer's family. More guilt. You can't do much to change the progress of the dementia, but you can make a better effort to cope afterwards. Do what you have to do to avoid the feelings of guilt. That pain can last longer than the original loss.

Your last line says it all.
Alzheimer's is extremely cruel to those who have it and their family and friends. It's reprehensible that medical research and reasoning can be stifled by religious belief and the same reasoning keeps people alive who are brain dead with disease.

Thank you Chris for sharing your pain and your story. I have been struggling with my mothers alzheimers for 5 years now. She just turned 89. At least she still remembers me, but that's about all. I know the frustration and pain. That's about all I can say. Life is a mystery.

Dear Chris,
I am so toughed by your article. I lost my father three years ago. As you said, "It is through memory that we hold on to those we love." Also, through many pictures we refreshing our memory. I have emailed your article to my daughter who wants to be journalist and I am hope she will be an one who can make impact through words. You are a definatly a great one.
Best wishes to your father. I hope you are spending as much time with him. Works can wait but not life.
Betty

I just lost my mom after 5 years to dementia/alhzhemier's and what a wonderful lady she was. As time pasted and she spoke less and less, my focused on trying in my mind to remember things she couldn't so I could remember them when she was gone. After her services several family members brought albums of pictures from her childhood for me to have so I could remember better.
What a joy for me. All I can say to others is remember the person as they were and carry on their lives and enjoy each moment. My mom was silent but had such a wonderful smile for the last two years of her life and I will always cherish that.

As an adult I have come to have mixed feelings about my memory. I recall loved ones and great experiences along with pain and loss, but I cannot imagine not having those memories. Now, partly because of my personal experiences I've become involved in long term care with a website guidetolongtermcare.com - the devastation both emotionally and financially that these diseases result in make a case for more research, more outreach and more resources for those families struggling with these diseases. I recently participated in a local Alzheimer's Memory Walk, check your local Alzheimer's Association office for a Walk in your area, it's a great way to get involved.

I am quite curious about this article. My mother suffered with dimentia resulting from trauma to the head after a hit and run auto accident. It was a 5 year struggle with serious aggressive behavior, extreme confusion and memory loss. My father, with outside help took care of her until his sudden death. Three years in a nursing home followed where she was given loving care. My heart goes out to you for the sudden loss of your mother and the painful experience of losing a parevt before they are actually dead.
Karen Joseph

Thank you for sharing this. I think the more sharing of stories helps those who have similar experiences. The Internet has taken the saying "it takes a village.." and made it new again.

Thinking back when tradegy struck around me while growing up it seemed that when the family or neighbors or church members participated in the process a healing occurred. As we became more isolated as a society we lacked the healing enviornment for times when it was needed. Let's bring back the healing enviornment.

Reading your description of your father's first stumbling steps into Altzheimer's brought back heart-breaking memories of my own father's journey. As you wrote, things don't seem so bad at first. But there is no remission, no recovery. Just a constant, slow slide into forgetfulness. Please know that many of us have been through this, and we are with you in spirit as you & your sister deal with your father's illness. God bless.

Two years have passed since my husband left this world physically. I was lucky that he only lived two and half years after the same diagnosis and I was able to keep him home. The day I had scheduled a move to assisted living for both of us I was in the hospital so two of my daughters made the move with him. Later in the day he announced he was ready to go back home. Explanations were futile so they took him back to "his castle" and put him to bed on a couch. When my daughter came to him the next morning he was dead. What a blessing! He knew his immediate family to the end so you can understand how blessed I consider myself. We had been married for 51 years.

My heart goes out to all the families affected by this difficult disease.

One interesting thing that I have learned in this journey is how much familiar music plays a part in the individual who is isolated by Alzheimer's. The person may not remember who you are, or where they are, but play them something from their earliest childhood and the light in their face is magical. Scouring the web has helped me help others produce music for their loved ones to listen to and brought much happiness.

Your vignette was brilliant.

Dear Chris,
I'm only 35 and have already seen the gripping trajedy of this disease with my Great-Grandfather and both Grandmothers. Both Grandmothers were diagnosed only weeks apart and I lost one a year ago, but the other is still hanging in there in a nursing home where she is visited everyday by the love of her life.
It is so very difficult to see the ones you love lose that connection to the ones closest to them. They are in there and sometimes, you get a glimpse, if only for a moment, before they return to the depths of their minds.
The cruelty of the disease is such that I have expressed to friends and family to let me walk in front of a Mack truck on a downhill slope, should I lose my mind down the road.
My heart goes out to you not only for the loss of your mom, but for the twisted loss of you dad.
My grandma wouldn't know when someone visited her at the time, but she knew when they left and expressed sorrow for their departure. I can't explain it, but from experience I can say he will know you've been to see him, even if he didn't know it at the time.
Hang in there.

Dear Chris.
Thank you for your story. I am just starting on this journey with my husband of 38 years and I know that it will not be an easy one. We have decided that his "condition" has a name and it is Alzheimer's. We will do what we can, while we can, to educate both ourselves and those around us about this disease. I know that I will not be able to walk this path alone, and through others, including strangers to me personally, like you, I will be able to do what I have to do as long as I can see the light ahead. My faith is what will have to sustain me as we move forward, but that faith finds hands, words and actions in people like you. May you find your way to be bearable as well and try look forward to each and every step with hope and confidence that it will be OK. You can only do your best and that is what you are meant to do.
Go in peace.

It is so wonderful to have you willing to share your experiences. My mother was so saddened when Dad would sometimes forget who she was. In her mind she knew why he forgot, but her heart hurt.
Dad was pretty happy in his dementia; he forgot the Parkinsons that was robbing him of mobility - and spent long periods in memories of childhood and with long departed relatives. We just went along with him on his fantastic tales and travels. We had enough "facts from the past" that we knew his tales were likely just true stories we had never heard (but he was living them again). I think we learned by listening.
Mom, the caregiver, died - and Dad did not have to grieve, but he did follow her away in 48 hours.

Thank you for sharing your personal touching story. I am in the means of putting together my moms memorial on sat 20th. She was an awesome person with great memory and wit. She had a make believe boyfriend named JoJo for awhile she took him with her even when we ate out. We just let her be she seemed happy. She came out of that with my brother moving in with her and helping. She died at 90+6mos. With my dads name always on her breath, Hank, she would say I love him so much. We were glad she got Hank in her mind again.
Two years ago I lost my husb. to alz. He became passive and loving I was very fortuate. He always wanted to hold hands, he smiled, laughed and sometimes cried, and said I'm so sorry. He recognized me to the end, I kept him home till the end. I wanted digity and to keep him clean and feed. He was diagnosed early in life. He started being noticed with alz. in his late 50's. He was a contracter and remodled homes. So he took ours apart when he did'nt know what to do. Funny now not then. Janice Miller Castro Valley Calif. God Bless you with your dad.

Dear Chris,
Cherish the time you have with your father, even when he doesn't know you. I was 12 yrs. old when my mother was diagnosed w/dementia but no one had ever heard of it and my father was ashamed of it. I'll be 65 yrs. old on 10/22 and I still remember my mother being very happy the last time I saw her at the mental institution where she lived the last two years of her life. She died at age 50 and I was 17 yrs. old when she died. I'm glad that we are able to bring this awful disease out into the open now and hopefully there will be a cure for it soon. God Bless you and your sister for caring for your father. I'm so glad they don't just toss people away in mental institutions now who have dementia/alzheimer's, like they did to my mother. Stay strong. I'll pray for you and your family.

Thank you Chris. I found your story moving and personally relevant. Here is a poem I wrote called "Tribute."

"I have loved, O Lord, the beauty of thy House
and the place where thy Glory dwells." (Psalm 25)

At Fort Sam Houston
the family united
to bid dad good-bye
his body a casualty of cancer doctors

She always went home after that
to a dead house
powdered cheeks clenched in a smile

that house
cool, dim, comfortable,
visitors often commented
how peaceful it was
like a cave nest
of downy cohesion

but a house built on a swale
suffers rampant erosion
cracked foundation
broken pipe
subsidence
leaking
evidence of rat
floor upheaval
the whole thing in need
of a drainage plan
a remodeling after Grief
moved in and drowned
every corner

thirty-eight years
She sang their salvation
an alto to his bass baritone

but together they let the house die
a slow demise from neglect
as he marched toward his eighteenth green
chipping and putting all things away
as She knelt by the altar
arms full of roses
arranged, cut, stiff,
like a practiced religion
adorning the House
of the Lord

it fell on me
to sell the house
evict sad phantoms
and salvage the living She

daily She prays the western sun
to put her back home
in a shadow-box past
her heart full of hymns
in a house full of treasures
made of china and plaster
a world full of him

that house never felt more empty
than when a widow
gazed through its windows
hands folded tight
her spirit howling

still She grips
the edge of its portrait
dabbing bricks with lipstick and crayon
colors it fresh with a blushing façade
then tapes its whole implicit history
to the wall of her cell
of desperate, quiet necessity,
no longer singing
but struggling
to remember the words.

Hi Chris,

You and your father have obviously led well-travelled lives and are blessed by a closeness that not all have had in life. My dad and brother are now in the middle phases of Huntington's disease and have suffered much limitation of what previously was a full life. I am an amateur photographer and am thankful I have been able to capture many moments of the past with them. Many of their symptoms are similar to Alz. though physical debilitation in Huntington's is quite disabling. Brother is a year younger than I, 44, and dad was once a medical pathologist and very intelligent, able man, now 70. Every moment with them now, as you say, I cherish greatly. The photos of them are some of my greatest treasures. Our time in this realm is not forever.

MAK

Thank you for your writings on your father. I have also found a great deal of good in what others have posted in response, and appreciate your having given us all the opportunity to share and express our own experiences. Your essay reminded me of a poem called "The Lessons" by David Swanger, from his recent collection, "Wayne's College of Beauty." He, too, dealt with a father fading away. A brief excerpt, the same story of surprising tenderness, confusion: "Fathers diminish like fallen snow,/cease to shave daily, and emerge/from the bathroom unembarassed/by the spots on their flies; they kiss/us at airports because something bad/will happen between now and then." His poem and your essay have echoed my own experiences dealing with my mother as she ages. Thank you for your honesty, and for giving us a glimpse of your very obvious love for your father.

Dear Chris,
I salute you and your sister for the patient love you have diplayed to your parents. How very sad to suffer the loss of your mother and the seeming loss of your father in such a short period of time. I have seen friends experience the dementia you describe where they are in a happy mental place and while it is a very real loss at least they are in a state of happiness rather the rage that some unfortunately experience. I am 81 years old and I thank God every day that I have been spared this condition. My prayers are with you and bless you and your sister once again for having been the kind of children to your parents that accumulated and cherish the happy memories. Love, Van

My father also suffered the same disease. My Mother cared for him as long as she could. Helping him up and moving around about wore her out. We found an excellent nursing home where he got the care and medications he needed. He loved the staff amd they cared for all as if they were were family. He always had a smile on his face. We would bring him out in his wheelchair around the beautiful grounds which included a duck pound. He was in his 90's when he died.

I work in a long term care facilty with a specialized alzheimers unit. Some would say it is a sad place but I find mostly full of joy. Our residents live in their own worlds and we are lucky enough to be part of it on a daily basis. It is hard for the families when their family member no longer knows who they are. Still, the resident welcomes the familiar face. They still take joy in seeing them. And, for those who no longer have family or their families choose not to visit, we become the familiar face and their security. I say take the joys as given and hold close those lifetime memories. Mom or Dad may have forgotten who they were but we haven't. Peace and love, Debby

Dear Chris,
My heart goes out to you as you deal with this cruel disease. My mother was in the earlier stages of Alzheimer's when she passed away 3 years ago. It was heart-breaking to watch a woman who had held my hand every day through my husband's strokes, as well as through my whole life, lose so much of her memory. There were many days when she knew very little but there were days I was blessed with her mind almost as keen as it always had been. To me the most painful part of Alzheimer's were the days when she was aware that she had Alzheimer's and would express her frustrations and hurt at not being able to recall things and recognize people dear to her. It broke my heart to watch her struggle to remember something or try to tell me something important.
My prayers are with you as you go through this with your father. I pray he will have days of more clarity but if not, just enjoy the time you have with him. I miss my mother daily.
Peace be with you

There is a vast majority of folks who have never experienced Alzheimer disease first hand. They only understand that the person who suffers from the disease loses their memory. They don't know or understand that that the disease causes the mind to also lose the ability to control all bodily functions. My father had the disease and actually died because his brain shut down his "memory" of first how to chew and then how to swallow. He had signed the DNR order when he still had the majority of his faculties and knew that he wouldn't want to be kept alive by artificial means. That meant that neither my mother or myself had to make that decision because unfortunately my father was perfectly healthy otherwise.

The article is touchingly brilliant. Having recently read “Follower” by Seamus Heaney, the noted Irish poet, I could actually relate that readerly experience with the emotional response that a reading of this note necessitated.

”…I wanted to grow up and plough,
To close one eye, stiffen my arm.
All I ever did was follow
In his broad shadow around the farm.

I was a nuisance, tripping, falling,
Yapping always. But today
It is my father who keeps stumbling
Behind me...”

The sad realization of the fact that, his father who once guided him during his formative years, is now so completely reliant on him, achingly rings true. It decidedly involves a transference of responsibilities. The Chris Johns article is a poignant statement of an understandably painful acceptance of the father moving under the protective shield provided by the mature, responsible adult child.