My
mother has suffered from Alzheimer's for a dozen years. At first, my father
covered up her forgetfulness. She always hated driving and handed over the keys
without regrets, a blessing for our family. We didn't have to worry about her
harming anyone or us hurting her
feelings by taking the keys away.
She
hid her troubles at family gatherings. I assisted her by using someone's name
when I spoke to them so she wouldn't have to ask.
But,
as with all Alzheimer's patients, things got worse. We had to take away her
credit cards. When I took her shopping, I'd pretend Dad was getting new checks
printed and would pay me later. If she noticed, she hid her discomfort well.
She
couldn’t remember what she'd bought at the grocery store. One unfortunate
summer day, a frozen orange juice canister came loose from her bags, rolled
under my car seat, and leaked open to ferment in the heat. Until it was professionally
cleaned, my van reeked so badly I drove with the windows rolled down, hanging
my head out to gulp fresh air.
Although
my father did his best, protecting her in so many ways, he lived in denial at
times.
Dad:
"Yesterday your mom couldn't remember who Debbie was."
Me:
"Yeah, Dad. It's called Alzheimer's."
Dad:
"But Debbie is one of her favorite nieces."
The
truth is, Alzheimer's doesn't let anyone keep their "favorites." It
takes everything away, piece by piece,
until you're left with nothing.
My
daughter was an infant when Dad died. The phone rang as I battled a messy diaper,
Mom's muffled voice in the distance. Not in any real hurry, I cleaned up then
hit "play" on the answering machine.
Mom:
"Ann, your father's at the bottom of the stairs. There's blood everywhere
and he won't talk to me. Why won't he talk to me?"
I
dialed 9-1-1 and raced over to Mom's house. The road was crowded with police
cars, fire trucks, and an ambulance. They carried Dad out on a gurney, an
oxygen mask over his cement-colored, unconscious face.
"Does
your mother have any violent tendencies?" a policeman inquired after
someone took her aside.
I
laughed, perhaps a bit maniacally. After all, Mom never even killed spiders.
She only "rearranged" them while cleaning. But I understood his
question all too well.
"My
mother has Alzheimer's," I explained. "But she's hasn't reached the
angry phase yet and wouldn't have pushed Dad down the stairs. My father was weakened
with leukemia and has always been clumsy. He fell on his own."
After
appeasing the policeman, we left for St. Mary's hospital. We were taken to a
room decorated with crosses and framed supportive messages.
I knew what was
coming. Mom did not.
I
tried to prepare her. "Listen, Dad was so weak already from the cancer.
I'm not sure he can survive this."
Mom
gasped. "Dad has cancer?"
When they led us to his body, I
balked at his caved in, bruised face. Mom prayed with the priest near Dad's
head while I hovered at the end of the bed, unable to take my eyes off his
wrinkled, gray feet.
Being
the only child, I took care of the funeral arrangements. I brought Mom along,
pretending she made all the decisions every time she turned to me with a blank
smile. The funeral brought distraught relatives and lifelong friends, each one
with a Peace Lily—a plant I used to love and now detest.
We
found Mom a nice apartment in an Assisted Living community nearby. Things
weren't too bad for about a year, except for her wandering. She loved to walk
and had to be rescued from Hobby Lobby craft store on occasion.
The
day we moved Mom to the locked-down Memory Care section she was tearful and
confused. I hated leaving her there despite the friendly staff. I hated
shrinking my mom's life even further.
I
despised myself for the lies I told her that day—how she'd be happy with so
many planned activities, her own personal (gated) garden, and new people to
meet (none of whom could hold a normal conversation). Mom had so little in life
left to enjoy. She tired so easily we could no longer bring her to the apple
orchard for an afternoon. When we took her home for dinner, she'd head for the
door after an hour. After her last non-nursing home birthday party several
years ago, she was so confused and exhausted the next morning that we ended her
small escapes from the nursing home.
A
few winters ago, she got sick with a respiratory infection, was put on antibiotics
and started to fail. We weren't allowed to visit at first. Then I received a
phone call begging me to rush her to the ER. The blood draws, x-rays, poking,
and prodding terrified my mother. When the medical staff arrived to gather a
catheterized urine sample, I panicked, knowing how that burns. I asked if this
was truly necessary, since my mother was already in tears. They insisted, which
is probably standard protocol. I gripped my mom's hands as she cried some more,
gasping as they took the sample. I questioned my honesty as I told her
everything would be all right.
They
diagnosed my mom with an adverse reaction to the antibiotic and sent her home
on a topical cream. On our return to Memory Care, I asked what forms I needed
to sign to avoid scaring my mother like that ever again.
Mom
lost even more cognition, was transferred to Nursing Care, and confined to a
wheelchair. During all this, she began to "improve"—and by that I
mean not die. She gained weight instead of losing it, so Hospice care was no longer
an option.
Two
years later, she's still slumped in her wheelchair, sleeping most of the day away.
She hasn't known who I am for a very long time—that doesn't bother me like I'm
told it should. The last year, she's even lost any glint of slight recognition
in her eyes at my arrival. There's just the watery, blank stare.
My
family visits once a week. Some may think we should visit more often. To be
honest, I can barely endure the time I am present. We take her to church where
I play the piano and watch her chest rise and fall. Sometimes she holds her
breath, and I think for a moment she's
passed. I'm happy because her suffering is over and she went peacefully. I
won't have to feel guilty about anything because I'm right there. Then she
takes another gulp of air and I wonder if God forgot about her. My grandfather
(who also suffered Alzheimer's) died from pneumonia before he got this bad.
Grandpa was the reason I knew about the angry phase of Alzheimer's—he'd chase
relatives around with a hammer or yell at me for raking his yard, tearing the
rake out of my hand and slamming the garage door in my face.
The
nurses at my mom's care center are lovely. I don't know how they do their jobs
with such sweet smiles, but perhaps it helps that it isn't their own parents
they help feed. I rarely feed my mother now. I used to do it more often, but my
family requested I stop because I turn into a holy terror afterwards. I should
be a bigger, better person but I'm not. I'm so very angry about so many things.
I'm
upset my mother has turned into this stranger. I expected her not to recognize
me, but now I no longer recognize her.
About the only thing she does is sound the same when she sneezes. She's not dressed
the same. She'd hate the yoga pants, extra large t-shirts, and zip-up
sweatshirts I bought for ease of the nurses dressing her. She no longer wears
lipstick or does her hair. She can't even read the missal during mass. She just
flips pages, trying to figure her way out of the confusion in her head.
Perhaps
these things are superficial, but they made my mother who she was. I miss how
smoothly she could spread frosting on cookies. I miss shopping with her. She'd
always insist I needed a white, collared shirt and there's nothing I hate more.
I miss delighting her with trips to the local zoo or the apple orchard with the
kids. I miss taking pictures of her holding my children's hands.
She
made magical dolly clothes and the most perfect baked chicken. She loved
irises, marigolds, and cookies. But there's nothing left of her now. I haven't
seen her smile in ages, and the last one was out of the blue, a gift to my
daughter.
I'm
sad my daughter only knows Mom through my hand-me-down doll clothes. My own
memories are crowded out by these years of deterioration. What if all I end up
remembering is this—her blank look, her shaking hands, her slumped shoulders?
I'm waiting for her to die so my good memories can come flooding back, as I'm
told they will after this painful prolonged mourning period is gone.
I'm
baffled it was difficult for me to obtain tramadol pain meds for my mother's
arthritis because she was "unable to communicate her pain." She can't
communicate anything at this point!
I'm
furious at my mom's friend. No, I didn't respond to your hateful letter years
ago but now I'm calling you out. How dare you imply that my mother's
humiliating disease is due to the fact that I didn't force-feed her coconut
milk! Take your Internet-based false Science and shove it where the sun doesn't
shine.
I'm
amazed at the level of denial in my parents' families and friends. Please don't
ask me if my mom is getting better—you don't get better with Alzheimer's. Don't tell me my mom is looking great.
She doesn't. Don't freak out when Mom asks where my father is. She doesn't
always remember he's dead. Now, of course, she doesn't remember him at all.
I'm
annoyed at the media, who blasts the scared public with a "new Alzheimer's
breakthrough" on an almost weekly basis. Quit playing off fear. Try
publishing something real for once, instead of these half-baked ideas.
I
get infuriated over studies "proving" patients got Alzheimer's
because they didn't read, exercise, or do Sudoku. Stop implying that somehow
these patients deserved this disease
because they were lazy. They suffer enough, and no one deserves to get Alzheimer's.
Most
of all, I'm disappointed that I can't help her. Visits from my family bring no
joy, no recognition. Bringing her cookies, once her favorite treat, just
confuses her. She doesn't even know what a cookie is anymore. I have to tell
her to eat it, making hand signals to get her to understand.
The
only thing I can do is ensure her access to pain meds. I'm a veterinarian. I
treat my patients better than my own mother. I discuss pain and quality of life
on a daily basis but it took a long time to realize my mom needed the tramadol for
her legs.
As
a veterinarian, I appreciate the grace in the act of owners choosing to
euthanize their pets to end pain and suffering. But I also recognize that the
issue in humans is fraught with selfish concerns—made clear in an Alzheimer's
support group meeting I attended years ago, filled with people desperate to
steal their relatives' money and let the state pay for their care. I stormed
out of that meeting in silence, although now I'd love to go back and tell them
all to go to Hell.
Multiple
times I've woken in a cold sweat from a nightmare of myself euthanizing my
mother—sometimes by injection, sometimes in a coffee cup. This is not anything
I will ever do, but I do pray for her to pass quickly and peacefully—more for
her sake than mine, or at least that's what I like to believe.
I'm
afraid that human medicine will never find a cure for Alzheimer's. It's a
degenerative, progressive brain condition. There's nothing you can cut out, no cells
you can kill with chemo. Nursing homes do almost too good a job keeping
patients alive, when it would be kinder to let them go.
I
fear that instead of ending suffering, human medicine prolongs it. What quality
of life does my mom have? The highlight of her entire last year might have been
the muskmelon I fed her this past Mother's Day. Her eyes were open, eager. She
wanted as much as I could feed her.
Somehow she
remembered her love for muskmelon even if she forgot her love for cookies—and
her love for me.
I'm so sorry Ann, such heartbreak, I've no words to express my sorrow for you and your family. As you take care of others, remember to take care of you!
ReplyDeleteYes, the taking care of me can get complicated--and, sometimes, there's just not enough time to go around.
DeleteThis was beautifully written and so brave of you -- to share your experiences this way. My mother died in 2008 of pneumonia, but had lived with Alzheimer's for many, many years. My stepfather was in such denial, they didn't even get a diagnosis until her problems could no longer be hidden.
ReplyDeleteMy grandmother had dementia in the years before her death, and my mother once made me promise that I 'would slip her a mickey' if she ever had the same problem. Had there been a 'mickey' available -- and had it been legal -- I might have granted her wish.
I, too, found my visits with her growing shorter during her last couple years. I did my best not to cry during the visits, but couldn't stop myself from doing so throughout the 90 minute drive home.
Memories of better times do come to the fore -- with time. And I'm grateful for the many happy, healthy years she had -- especially all the traveling which she was able to do -- but I am still angry that this disease stole everything from her during her last years.
I'm so sorry you and your mother are going through this.
Yes, the ride home is awful. That sounds all to familiar to me. I hope you've found that your good memories (prior to disease) have come back. I'm hoping and praying this will be the case for me. Take care.
DeleteThis is so heartbreaking Ann. So many others must be going through this too. Beautifully expressed.
ReplyDeleteYes, there are so many suffering just as much--or more--than I am.
DeleteBeautifully written. I agree with what you said about medicine and it being kinder to just let go. Sometimes I think we need to let nature take it's course rather than grasping short straws. As a nurse, I have been in the nursing home caring for patients like this. Some of the staff did fine, I don't know if they were able to distance themselves. Many got attached to the patients. I was one of the latter group, I got too attached and burnt out quickly from the heartbreak. I thank God the others were there and able to handle it. I can tell you gazillions of stories of my time, but most won't be helpful. The only part that might help is telling you what you already figured out. Bring her the muskmelon! Find those little silly things that bring her joy and bombard her with them. At this point, who cares if it's not good to eat muskmelon three times a day? She's earned it! And so have you. Have you seen the movie God's Not Dead? There is a scene where Mina goes to visit her mother and the nurse brings her food tray. Mom gets so excited for the chicken, says she can't remember the last time she had it. Nurse says yesterday, and the day before. Mina expresses her concern that maybe mom needs variety, not good for chicken every night. The nurse looks at Mina and says, "Do you know anything else that will make her that happy?" Find the happy, do that. God bless you. Hugz!
ReplyDeleteI'm still trying to lure my husband into seeing STILL ALICE, but I'll put this one on my list as well. Sometimes, the nurses give me guilty looks and tell me my mom eats more dessert than anything else. I assure them that I'm more than happy for her to eat cookies and ice cream--whatever makes her happy, or as happy as she's capable of being at this point.
Delete