Wednesday, April 18, 2018


Sometimes I cry when I rake the leaves or walk the dog or clean the house. I don't cry because I am sad. It's a release for moments when I want to scream or quit. There have been many occasions when I have yelled out, "I cannot fucking believe this is my life!"

The frustration comes in the unexpected and unpredictable moments. Change occurs. A shift in the trajectory of my mother's disease creates a split second of chaos that spirals quickly into a mini disaster and I want to scream or quit but instead, I just cry.

I don't need comfort or a hug or help making dinner. I need to become a mind reader so I can peer into my mother's brain and see the disconnects that cause the forgetfulness and the failures; so I can fix stuff before it happens.

For months, mom has been getting sick all of the sudden. She has a seemingly good day and then, without warning, she is nauseated and vomiting. It took a number of occurrences and months of seeking answers to discover that she wasn't eating.  She was going all day without eating. Dad made sure she took her pills but didn't make sure she ate. The medicine made her sick and created a number of other side effects like insomnia that would keep her up ALL night. Usually when we say we didn't sleep all night, we mean we only got a few hours of sleep. But when my mom is up all night, she does not sleep one minute. And that causes a more rapid deterioration of the brain.

One issue resolved. So many more ahead. Probably more tears as well.

Monday, March 19, 2018

Entering A New Phase of Alzheimer's

The call came three weeks ago. My uncle, who is in a nursing home designed to care for Alzheimer's patients, lost his ability to speak. Growing concern for his inability to communicate caused his dear friend and caregiver to pick up the phone and share the news.

With the call on speaker phone, my dad attempted to chat with his brother, who is younger by six years. My uncle stayed silent on the other end. My uncle's friend Henry, another priest and Franciscan monk who studied with my uncle and knew him for roughly 45 years, responded instead. He encouraged my uncle. "John, do you want to say hello to your brother?" Henry prompted to no avail.

Finally, I spoke, "Hello, Uncle John!" Henry reported that my uncle's face brightened as a broad smile spread across it.

"Do you know what Tuesday is?" I asked.

"No," Uncle John finally responded.

"It's my birthday!" I proclaimed.

"Oh!" He replied again.

Henry interjected again, "Do you want to sing "Happy Birthday?"" And, together, Uncle John and Henry sang "Happy Birthday" to me.

We decided after that conversation that a visit to Wisconsin was imperative, even if the seven hour drive had to take place in driving snow. It would be March after all, and Wisconsin winters were never as forgiving as they had become in St. Louis, Missouri.

So, last Friday, we loaded up the car and drove to Manitowoc, WI. After spending Friday night arguing with one another and going to dinner, We visited Uncle John three times: twice on Saturday and once on Sunday morning. Our time with him proved as heart wrenching as it was lovely.

To my sister's credit, we purchased some sweets for our first visit which took place on Saturday morning after Henry took Uncle John to church. While Alzheimer's has stolen my uncle's ability to communicate, it has not yet confiscated his sweet tooth. We ate donuts and laughed at silly things for probably far too long. And then my uncle went down for an afternoon snooze.

On Saturday afternoon, we returned to the nursing home to find my uncle inconsolable. He cried uncontrollably. That said, he did speak, saying, "I've had a rough time." We all hugged him many times. He loves to hug. He holds you tight and kisses you on the side of the neck. Sometimes, he holds on for a very long time. It was a difficult experience. It shook my nephew and my dad. My mom cried with him. My sister and I stayed strong and tried to remain reasonable. He was not crying because he was sad. He was just crying. And we knew there was nothing we could do.

Finally, on Sunday morning, we popped in for one last visit. There were no words on Sunday beyond a "yes" or an "uh huh" but there were plenty of smiles and lots of laughter which seemed like a good note upon which to end our visit.

Alzheimer's wages a cruel battle upon its victims and the families who love them. The endless unanswered questions are unbearable. Accepting that nobody really knows what is going on in the mind of someone afflicted with torturous disease does not make enduring it any easier. If only they could communicate. If only they could tell us what is going on in there. If only they could articulate their pain or sadness and even their moments of joy.

The call that came three weeks ago forced our whole family into a new phase of life, not just a new phase of Alzheimer's. And, I, for one, am not ready.

Sunday, December 24, 2017

Christmasing On

Our Christmas traditions have changed dramatically over the years. Some traditions have faded to black and new traditions have begun. We used to spend every Christmas Eve with my mom's side of the family. I grew up with 11 cousins and one sister so our family gatherings were loud, fun, laden with favorite foods, and completely packed with people. The dads watched a lot of football. The moms did all the cooking and cleaning. The kids played. Then on Christmas morning, we journeyed out to spend the day with my dad's small family.

As the years passed, I began to participate more in the preparations, engaging my love for baking and meal prep. I enjoyed nothing more than baking and cooking for dozens of family members. But, our gathering became considerably smaller year after year, as cousins got married and eventually we celebrated only with my mom's twin sister and her family. Finally, after a falling out with some cousins, that tradition ended as well.

Now, as my parents stroll into their 50th Christmas together (49th as a married couple), I am merely a facilitator of joy for them. I realize that the time I have left with them is short and I also realize the time I have left preparing a Christmas is short. So, I sleep very little, I bake and cook a lot, and I try to cater to the wishes of my parents as often as possible. We do not spend Christmas with my mom's family at all. My dad has no family left. But on Christmas Eve, my best friend and her family joins us for dinner and Christmas day includes church and an early dinner with my sister and her family.

Christmas is sometimes more difficult than joyful these days. The dissolution of our family base has been most difficult for my mom but now, I think it might be toughest for me. It is so hard to watch as mom understands less and less while she forgets more and more. I miss having her help stuffing manicotti noodles for Christmas Eve dinner and squeezing out the press cookie dough. I wish she could still go out for a walk in the snow with me. But we do what we can which usually includes watching a Hallmark movie and drinking a little Rumchata. It's hard for dad too as he watches over her medicine routine and helps her help me so she can feel like she is a part of getting ready for the holiday.

Yet, we keep Christmasing on... We decorate until her heart's content and bake her favorite cookies and visit with the few friends who will pass through before the new year. We sit together to write our Christmas cards and she complains about how I vacuum. And we find happiness in the very little moments and the memories that come up for her in the process. Most of all, we hope. We hope that in spite of the difficulties and the changes and, often, the isolation, this is NOT the last year. We hope for many more.

Until tomorrow...

Sunday, October 29, 2017

What It's Not

Alzheimer's is not initially a fatal illness. It is a thief that steals tiny bits and pieces of being with the ultimate goal of destroying a person.

It is not an on-your-death-bed, unable to care for yourself disease. It is washing the dishes by hand but not remembering where the towels are to dry them. It is eventually drying those dishes but not remembering where they go or if they even belong to you.

Alzheimer's is not being unable to walk to the bathroom. It is bathing once and then again and maybe considering it a third time because you don't remember if you bathed or not. It is using the toilet but not being quite sure of how to properly clean yourself. It is flossing your teeth but not brushing. It is washing your hair but not rinsing. It is sometimes forgetting to go in there all together for an entire day.

Alzheimer's is not initially a situation that requires outside care such as nurses or a facility specific to the disease. It is needing to be surrounded by your family, people who love you, people who love you even though, people who can remind you that you are still completely normal even though you keep calling the dog the wrong name or you have asked 17 times what classes your grandson is taking in the last hour or you can't remember to saw with the serrated knife instead of just ripping through the crusty bread of your sandwich until very little bread is actually intact.

Over the last few weeks, life with a parent with Alzheimer's has become increasingly difficult for me. Seeing the change right before my eyes is frightening and sometimes overwhelming but I am also in awe. My mom's need to be needed is very strong right now. She wants to be useful and helpful so I have been giving her small, short, easy tasks like folding the reusable grocery bags and putting them away while I store the food in the proper places.

The answer in the midst of the changes, however, is not to get someone else to take care of her. Many have suggested that I get in-home health care for her or hire a care-giver which is, quite frankly, absurd. My philosophy on caring for elderly parents is certainly evolving but it is much like my philosophy on education. I am a facilitator for their lives. I am working hard to create an environment in which they can thrive as independently as possible. If you create a hospital-like or prison-like atmosphere, the tenants of that environment will act as if they should be hospitalized of imprisoned. If you facilitate an environment of serenity and growth where change is acceptable and not a reason to stop caring for someone, you offer a sense of hope and peace and happiness.

Alzheimer's is not an easy road to travel and there are many days, I'd like to make a left and head off on another path. I have stopped wishing we could make a u-turn and head back to simpler times and I am embracing the uncertainty of what's ahead because I won't let fear win.

Alzheimer's is not an excuse to leave. It is an opportunity to return the favor your parents gave you.

Friday, August 4, 2017


Today is one of those days.
I am tired of saying the same things over and over.
I am tired of cleaning up messes.
I am tired of administering medicine to people who argue with me about what day it is.
I am tired of running to the pharmacy.
I am tired of adults throwing tantrums when they don't get their way.
I am tired of having to talk to my mom like she is a child because she doesn't understand that she can no longer carry heavy items up and down the stairs and towels cannot be placed on the stove and she has already watered those plants three times today and no, don't throw that away.
I am tired.
I am tired of doing all of the cooking.
I am tired of hauling recycling and trash out to the alley twice a week.
In fact, I am tired of recycling.
I am tired of getting attitude from folks who cannot take care of themselves when I do damn near everything around here.
I am tired of folks not throwing trash in the trash can.  I am not here to pick up after you.
I am tired of everyone else telling me I should "make" my dad do more. How? He does not care if the house is a mess and he will eat cheese sandwiches from now until the end of time.
I am tired of people drinking my soda and eating my oatmeal creme pies.
I am tired.
I am tired of being tired all the time because the work doesn't seem to end.
I am tired of feeling like I am just staying afloat so I can live for everybody else.
It's one of those days.
I know that I will miss these things one day.
I must sound like an ungrateful daughter.
I am just tired.

Friday, July 21, 2017

Cheese and Crackers

I suppose one could survive on cheese and crackers and fruit. They are all food products with some nourishment. They are capable of filling up your stomach and quelling hunger pains. But the thought of my elderly parents having to eat cheese and crackers and fruit every day horrifies and frightens me.

In my past career, I traveled frequently but since becoming a teacher, my travel is limited to one trip per year and, maybe, a weekend or a night away occasionally. Before departing for an adventure with my nephew this summer, I cleaned out the refrigerator and restocked it with various beverages, snacks, and pre-made meals (which were mostly leftovers from larger meals I made the previous week). Recently I returned from that five-day trip, only to discover that the pre-made meals were still in the freezer and that my parents had consumed mostly fruit and cheese while I was away.

While this may seem a trivial worry to many, it is merely one of many concerns that rotate through my brain on a daily basis. What if I am not there? What won't happen? Will they eat? Will they clean up after themselves? Will anyone visit?

It has been said that to worry is to focus on the negative and that too much time worrying detracts from productivity and enjoyment. So, I try to enjoy the moment. However, in the back of my head, I am still wondering what happens when they are out of cheese?

Wednesday, July 5, 2017

Gratefulness: Our Silver Lining

Last week, she took two baths, just hours apart. This morning, she brushed her teeth, applied her face cream, combed her hair and put everything away before she brushed her teeth, applied her face cream and combed her hair a second time. She did it all back to back and had no recollection that she had done it the first time through.

My mom and her Alzheimer's walked hand in hand into a new stage of life. While I am certain it isn't, in the least bit, the scariest stuff we will see. It is still frightening. Some days, I sit back and watch as she stumbles through repetitions because it is upsetting to her if I draw attention to it. Other days, when time is not on our side, I have to tell her, "you already did that mom" and redirect her to her next task.

There are days when my redirection makes her angry. She snaps at me. I know her frustration is really with her brain and not with me but it stings. It is usually those same days when she  is least like "my" mom. And I miss my mom.

I miss conversations about life and sharing my day or an experience with her. I even miss her telling me what to do as if I am still a teenager. "You know, Michele, you really need to wipe down that tile in the shower when you get out of there." "Did you lock that front door? What about the back door? Is it locked." "Get your dog out of that living room and off the couch. She is going to tear it up." She was a total nag.

Gratefulness offers a silver lining on our dark days. Mom thanks me all the time and says I love you every day. Often, she stops what she is doing, no matter what it is, and says, "You are such a good person, Michele." I will cherish that forever.