This piece originally appeared two years ago. We’re still with Odyssey. And my mother is still, alas, not dead.–pt
The other day we got a condolence note in the mail from Odyssey Health Care, a hospice company (“Big Hearts, Better Care”). It was addressed to “all the family members” of my mother, and written in dry, black ink. “Our deepest condolences to all of you,” the note went. Signed: “Odyssey Hospice Staff.” Below the fold, in print, ran a few more lines about memories easing pain, and wishes for us to find “renewed strength in the caring support of family and friends.” Surprisingly for a health care company these days, no bill.
We’d called hospice in to take care of my mother, a resident at an assisted living home off of Belle Terre Parkway, a few months ago. A different hospice company had just finished off my second father (after a long illness, as they say in the necrological business; a heart attack swiped off my first decades ago, when he was the age I am now), so calling in the gentle reapers had something of a reflexive quality to it: Hospice is the humane, legal, slow-mo version of assisted suicide, a concession that postponements of the inevitable are themselves down to their last unassisted breaths. The condolence note from Hospice was a surprise though. It was also slightly premature.
My mother, of course, hasn’t died. Not yet anyway, though in most regards she’s been dead for several years now: Alzheimer’s is the sort of torture that imprisons the body in a fate worse than death while keeping it conscious for the rest of us to see, like spectators at an endless hanging, and for the victim to, for all we know, endure with more awareness than we dare admit. In that sense the condolence note is at least a decade late: the disease began its assault on my mother’s mind in the mid- to late 1990s, when she was still in her 50s, and living life more fully than if she were competing with the days of Genesis. I don’t think I ever took to religion or the tall tales of my Catholic upbringing because in her presence any deity’s deed looked small, and her radiance was more real than any transfiguration the gospels could pull off. For the past ten years it’s been more like witnessing her crucifixion, day after day. To believe in a god that capably cruel would be offensive.
So the absurdity of the condolence card had more truth to it than the ironic words of the card itself: “May your memories help ease any pains…,” as if the betrayal of memories weren’t the problem to start with: to remember on behalf of an Alzheimer’s victim is an act of salvation, like writers and artists who preserve demolished worlds. It’s also a galleon of guilts, tilting in the crosscurrents of the very act—remembering—that the remembered has been denied. It’s not any different than mourning, except that those of us who have parents or grandparents or lovers or—heaven forbid, children—lost to Alzheimer’s mourn in their presence, to their blank face, every time we see what’s left of them. They are the true living dead, just as we’re the disease’s accomplice, its fellow torturers, for keeping them alive. It’s not just one galleon but a whole armada.
For that and other reasons it wasn’t upsetting to receive that condolence card from Hospice, despite its coldness (a white card, essentially a commercial for the hospice company wrapped in rote sympathy). For a moment there I sensed fancied relief mixed with the sort of comedic resignation my wife Cheryl and I have become used to in the past 10 years, dealing with every possible aspect of that earthly afterlife wishfully referred to as elderly care. From ERs to assisted living facilities to nursing homes to rehab hells to sneaking and swindling caregivers suckling at Medicare’s teats to supplemental insurers’ gangsters to profiteering specialists and their pharma accomplices, we’ve experienced it all. Not for ourselves. That’s to come. But for our parents. We’ve had a front-row seat to the low-simmer crime against humanity that still manages to pose, in more fanatic eyes, as the world’s best health care system. Not even the Pentagon is that wasteful—in lives, dollars or time.
A mistakenly written condolence note from a hospice company doesn’t add up to a hill of beans in comparison. To the contrary. The picture wouldn’t have been complete without it. We laughed about it, briefly, having long ago moved past even laughing about what used to infuriate us and hurry us along to our own decrepit health, when we’ll become wards of elderly care’s monstrous maw, if we make it that far. I’ve learned through all this not to knock the fortuitous heart attack: it can be a hell of a blessing, considering the alternative, assuming it strikes you when you’ve pretty much completed your responsibilities to parents and children, and your next of kin begin to morph into insurers and health care providers.
A very nice bereavement counselor from Hospice did eventually call to apologize for the note, a few days after we pointed out the error to her home office, just to be sure that my mother’s hospice services weren’t interrupted. She attributed it to a filing mistake. I assured her it was no big deal and to save her bereavement energy for those who needed it. I’m sure she understood when I told her that the saddest part of receiving this condolence note about my mother is that it was a mistake.
Happy Mother’s Day.
Pierre Tristam is FlaglerLive’s editor. Reach him by email here.
Jim Guines says
May God bless you, my friend.
I am so sorry about the state of your mother’s health. Hopefully your words will encourage others to appreciate the short time we all have with loved ones.
Alzheimers is a horrible and heartbreaking disease.
I think you are very brave for revealing your personal family struggle with it. I must admit though, your story and the photos of your mother only made me want to know more about her….I bet she was just like her picture, radiant and beautiful.
Very true article on Alzheimers. This is a terrible disease; draining emotions, finances, etc. you name it! I was the care taker for my grandmother; and I wouldn’t take back anything for being able to attend to her last needs. I try to remember her in her youthful days; but every now and then I remember a special moment or two that we had during her final time.
Your mother is beautiful; and looks as if no disease would be able to invade her body or keep her from having a good time
May God watch over you and bless you. I enjoyed the article very much.
Jack Howell says
Sorry to hear about your mom. I lost my mother when she was 47 years old. Your comments struck home. Thanks for sharing my friend.
Beth Gardner says
Thank you for sharing your heart Pierre!
This was a fantastic piece. I extend my good thoughts to you and your family. The pictures of your mother show a beautiful woman. The one with you and her shows a woman who is enamored with her little boy.
You are a real brave and generous man for sharing such a private struggle. Just remember that your mother, her memory and all that she is will always live on in you and the good work that you do! I am sure she is, and has always been, proud of you.
Happy Mothers Day, Pierre’s Mom!!!
Kerstin Bowman says
Its funny, my husband brought your article to my attention, with the statement, “If I didnt know better, I would have thought you wrote this article.” My mother started showing symptoms as she turned 60. My father chose to ignore the symptoms, mother denied them. Long story short, 10 years later, she is in excellent health but her mind is gone. Every visit is a fresh wound, grieving the strong, smart beautiful woman she always was. Death is easy, the living suffer the loss, and we go on. With Alzheimers your family member becomes a living shell, dependent on others to take care of all their needs. I worry constantly, is she hungry, is she thirsty, is she in any pain, is she sitting in her own wastes, will the staff notice. When will it end. I Love her so much, shes my mom, but I pray for her release.
Pierre Tristam says
Your husband is right. We could be writing each other’s stories. That was just about my mother’s age, maybe late 50s, when she started her symptoms, my father–my second father–ignored them, my mother vehemently denied them, and now only her strong health remains, like an irony in the face of everything else that’s failed. What’s less easy to reveal is the deal we make with ourselves, the resignation and acceptance that no matter where she is, whatever they tell us at the assisted living facility (and there’s been many), it’s never good in the sense of being truly humane, truly warm, as it would be within the family, though we were the ones to turn her over–essentially, to abandon her to that assisted living underworld and the occasional visit. If there’s a Nuremberg for children of Alzheimer’s parents, I’d be one for the firing squad. Instead, I’m having a Dubonnet to what’s left of her health.
I appreciate everyone’s thoughts. My reluctance to write pieces like this is that they never fail to look like a hunting safari for sympathy, though I revile hunting of any sort, particularly this kind, and personal public revelations are an epidemic that can use fewer carriers, not more. But some stories should be told, and the only way to salvage our most cherished memories and lives is to write them–or paint them or make music of them. I imagine telling my mother’s stories may be a small way to shove a kneecap in Alzheimer’s maw.
Speaking of which Gloria, if only you knew that radiance: my mother for fifteen years had written and hosted a children’s television variety show in Lebanon, live every Thursday (“Le Coin des Jeunes,” “The Kids’ Corner”), and at one point had that show, a radio show and a newspaper column at the same time. The war messed things up a bit, and forced the exile that eventually landed us on these shores.
Beth, Edward Abbey in Desert Solitaire wrote that “We need a refuge even though we may never need to go there. I may never in my life get to Alaska, for example, but I am grateful it’s there.” It’s exactly how I feel about your church, where Mom, for all her pious Catholicism, would have felt more at home than at either mighty saintly mothers in town. And I’m grateful you’re closer than Alaska.
Jan Reeger says
Holding back my tears, I commend you on your tribute to your Mother and the philosophy that accompanied. I have many similar feelings and my heart aches for you. Thanks for sharing.
My wonderful Mother had something called “Dementia with Lewy Bodies”. Similar but different from Altzheimers. Bad difference is the hallucinations and misperceptions of surroundings that brought her such fear. Good difference is it does not endure for so long. Mother died in less than 2 years from the onset. I wonder if the disease was caused by her grief in losing my Daddy several years earlier.
It is getting easier but, sometimes it is still a struggle to not vision her anguished face from that horrible time, now 10 years ago. Mostly I am able to remember her smiling face, generous love and cherish the very many years of great memories and happiness. I love you much and miss you Mother!
Liana G says
“May your memories help ease any pains…,” They does not. I was 26 when I lost my mother to what we now know was alzheimers, followed by a brief stroke that eventually took her life. I vaguely remember the energetic, take charge, and fiesty person my mother was. Most of my memories are filled with a person who I no longer recognized and, at the time did want to accept and could not accept. My mother was my world. I do not want that for my children, I do not want my children to have their good memories overshadowed by the painful, and devastating ones. And my family knows this. And I hope that when I reach that stage in life where I am of no use to my family any more, I would be able to find a Dr Kovorkian to assist me with my wishes, and I hope that my family will honor those wishes. My mother wanted to be cremated and have a tree planted over her ashes, instead she is buried in a cemetary with all the bells and whistles.
Pierre – I don’t know what to say to you, except honor her wishes . . .
Excellent piece and thank you for sharing. I too have had my Mother leave this world and at times it is still very hard. My prayers are wiht you and your family!
[email protected] says
very touching story, life is so very short . i almost lost my wife to breast cancer last year and think about it every day and care less about materialistic things in life. Pierre, a very good and to the heart story.
Jenn Kuiper says
Thank you for sharing Pierre. My grandmother had Alzheimer’s for over a decade. It was painful to go and visit her and see how much she was deteriorating. I think the hardest part was when she no longer recognized/remembered me. She thought I was her sister and she would talk to me about her past and the things she did with her. I just played along and it brought her some happiness, for awhile. Once her eyes stopped shining I just prayed for her pain to be taken away. It was a long ten years. I wouldn’t wish this on anyone. I hope people’s eyes are opened by your story. That’s why we share our stories: to share our humanity so others can find theirs and hopefully empathize.
My mother died in 1986 @ 62 years old. She and my Dad just retired to enjoy life we were all happy for them. Then in one year she dies of cancer. I miss my Mother and Father if it was not for your article I think would not have thought of her much until the day of Mothers Day. because it has been so long ago that I felt her warmth. Happy Mother’s day to your Mom from me too.
A wonderful and touching story, as only one with your talents can write. Thank you for inviting us into your family, if only for a moment.
My maternal grandmother suffered two massive strokes, the second of which left her as a shell, a body without a mind. I recall driving my mother to the assisted living facility for weeks, visiting grandma, hoping for a sign of recognition, a word, anything. None ever came, and it was painful to watch my mother die a little each day. When grandma passed, it was more of a relief than a date with the inevitable.
Fast forward now by approx 3 decades. My mother deteriorated over a number of years, bravely attempting some quality of life with the assistance of a daily regimen of pills. My father (stepfather actually) never left her side, saw to her needs, loved and comforted her to the end. He was at her bedside on 6 Nov 2008, when she slipped away from us. Like with my grandmother, it was more relief than pain. I was 1200 miles away, my last contacts with my mother being by way of telephone. Dad told me I wouldn’t recognize her, to this day he’s not forgiven me for not coming home to western New York for a personal good-bye.
For what it’s worth, and possibly with selfish motive, I would prefer the quick demise of a heart attack or fiery auto crash. I do not wish to lay in a hospital bed, clinging to what once was, to the detriment of my family. It is not my wish to inflict the pain I’ve experienced on those that I love, enduring death in slow motion.
Happy mother’s day to all. Be they alive or not, as long as they exist in our memories, our mothers are not really gone.
Happy Mothers Day one and all, but especially to Pierre and his Mom!
Remember the good parts, forgive the bad ones.
Exceptional story. Thank you for sharing it with us. It’s a nasty disease. When I was 23 I had to move back home, 2 months latter both grandparents came to live with my parents & I got a big dose of reality. My Grandfather, that bigger than life, outdoors man, stronger than a ox, had Alzheimer’s. Alongside my parents I helped take care of he’s daily needs, we kept him at home until he finally passed.. At times I was grateful that his (or so I thought) mind wasn’t there while I bathed him or cleaned him, because I knew if it was he would be utterly ashamed, so I would sing, to ease my mind & comfort him. Sometimes I would get a slight smile from him when he had his favorite food – ice cream It was a BIG life lesson for me at the age of 23.
My Mom is physically departed since 1997…but I feel her presence around me daily when I cook her favorite meal, from those old inherited recipes she gave me. In the garden when I grow her favorite flowers and cherish the memories of my younger years by her side gardening along by my mom, my closest friend of those years. Recall the laughing about the funny tales and the silly things she at times will goof around in her elderly years. Few days ago I satisfied a strong desire buying for my garden a blooming Wisteria vine that I planted in the highlight spot of our front entrance. Simply because bring memories of my Mom, smiling among the blue fragrant blooms in the springs and summers of our youth, relaxing under the trellises of our patio Wisteria, while my younger brothers and sisters were battling for our playful Mom, undivided attention. One day we will embrace again as she will be waiting for us with open arms and her luminous smile.
Steve Wood says
Nice article Pierre, I lost my Dad in 07 after after battling Alzheimers for 10 yrs also. My Dad was in perfect health and played 18 holes of golf almost everyday he could play. It was absolutely terrible to go and visit him and after 88yrs watch him go from a war vet and a hard worker for his family to a baby laying there in his bed not knowing anything. The love of his life was my mother and the love of her life was my father. I never really knew that someone could will themselves to die but my Mother did and died 3 months to the hour that my Dad did. She could not bear to do a christmas without him after almost 60 yrs of being together we buried her on christmas eve in 07. My mother fought 2 different brain tumors, breast cancer, so she had had multiple chances of dieing but she could not see my Dad alone and fought on for 25 yrs, so they are together in a better place and together which gives me and my family a feeling of peace. We love them and miss them both.
fadi Haddad says
This is year 15 seaching for you on off. Finally a few minutes ago Monique came to my mind and I thought I would put a search on her. Here is what I got. If you dont remember, I stayed at your house in Queens in 1981 and you came to my house in Blacksburg to visit me and wy wife. You have so many comments on Alzheimer. I just want to tell you, Monique and Fouad look so beautifull in the picture. I am lucky, because the 30 years old memory I have is a very optimistic and smiling Monique very happy and proud of her 3 sons and her new husband.
Anyway, I hope I am writing the reply to the right mail. let me know where you are in the US and a phone number maybe. I am in Kuwait, just came back 3 weeks ago from Boston.
Good to find you.
I am one of the lucky ones. Monique is still for me, that beautiful smiling welcoming woman who fed and entertained the friends of her 3 sons. I know that your memories of that woman have dimmed in the face of her state today. But I sincerely hope that they in turn will be forgotten so that you may retain only the good…
Perry Mitrano says
You know it does not take much to remember my mother on mother’s day except one this, how much I trully miss her. This was a good read 2 years ago and again now. Thanks for sharing.
Sue Dickinson says
I can certainly understand how you feel. My mom passed away April 2008. In 2006 I went to Syracuse to surprise her for Mother’s Day. Only I was the one that was surprised perhaps shocked. When I walked up to her, hugged her and presented her with flowers, she looked at me like a total stranger. She was wearing a corsage and I asked her who she received it from. Her response as she looked at my dad was “him”. I said “oh you mean my father” and she responded “he is not your father” I said “yes mom he is and you are my mother” and she said “Oh no I am not”. Every visit I made home after that which was often she would open the bedroom door where I was sleeping and go to my dad and say “get that stranger out of our house.”. Her condition worsened rather quickly after that and it was necessary for us to put her in a Nursing Home. She had the wits about her to escape numerous times even though she was on a “Secure Unit”. Her living there lasted 10 very long months but the one person that suffered the most was my dad as he always thought she was going to get better and come back home. Mom did recognize her grand-daughters when they made a visit to her 2 months prior to her death and I am so very grateful for my daughters sake. For her sake and those around her she was called to her next life and certainly has to be in a better place. But every Mother’s Day I relive that day when for the first time she had no idea who I was. I always loved you mom and will miss you forever. This is the most debilitating disease for any family that experiences it.
Pierre Tristam says
Sue, I was not aware of your difficult times with your mother after the disease took its toll on her memory. To hear those words, “not my daughter,” from one’s own mother, must be a form of murder without actually dying, which is really what dementia is all along: a form of death where death doesn’t happen, but keeps accumulating one hurt after another. You don’t need flames to make a hell, you just need Alzheimer’s. And so all my belated sympathies.
Great piece Pierre. Very touching.
To all those so fortunate to still have their Mom’s …enjoy their company while you can because when they are gone our lives change forever. Hope was a Happy Mother’s Day for all those Mom’s still with us and the one’s in Heaven.