She is Forgetting Some of You

My mom is forgetting some of you.

Please don't be offended when we see you and she doesn't say "hello" right away. Or when I say, "Mom, you remember so and so, don't you?" And she nods and acknowledges you even though she isn't quite sure. And please don't say, "Of course she remembers me!" as if I am mistaken because she really doesn't and it will make her feel bad.

The newer you are, the more likely she is to forget you, especially if she doesn't see you often. At my cousin's funeral recently, the number of people passing through and speaking to her overwhelmed her. She didn't recognize a lot of people because her distant memory is clear and she remembers the way you looked when you were a kid or when you were younger. She even said of her own brother, "I wouldn't have recognized him on the street" because she remembers a younger man and when she pictures him, she pictures a man in his prime, with a young, beautiful wife and small children.

Sometimes after we have run into an old classmate of mine or a former neighbor or even a relative we haven't seen in a while, she will say, "Oh my she doesn't look like herself." But... she does look like herself. She just doesn't look like herself when we were teenagers.

One day, my nephew asked if she will forget us too. The short answer is yes. I will never forget when my grandpa forgot who I was. I came home from work and walked into the back room and he was terrified. He not only didn't know me but he was afraid because he didn't know me.

It will absolutely suck when we reach that phase and I pray that it is ten years down the road. Selfishly, I dread it mostly because I know it is something I will have to go through alone.

There's nothing we can do to prepare for it except be around. Be around as often as possible. Call. Visit. Hug her. Listen to her tell the same stories and ask the same questions at a ridiculous clip within the short time you spend together. Be patient and just be there because, she is already forgetting some of you.

Strike

For ten minutes I bent over the tub with my mom hanging from my arms unable to help me as I pulled her out of the water. All 170 pounds of her pulled in the opposite direction as she tried to pull her legs under her. Fear gripped her. Frustration came over me. She wouldn't follow directions. Or she couldn't. I don't know.

"Stop pulling!" she kept yelling in between crying about not being able to get up by herself.

Finally, she got up to her knees. I continued to hold on until I could get her up to her feet. Then I took her hands and helped her out of the tub.

"This can't happen again," I said immediately. "From now on, no baths. You can use the shower chair like dad."

I asked her if she needed anything else. She said no and started to dry herself off.

I am not equipped for this. When chaos rears its ugly head, I shift into project management mode. Every day, I am thankful for my 16 years as a manager. Immediately I ask myself, what is the task at hand, when does it have to be done, and how can I make it happen with no time and no money? So, while I feel compassion, it comes out of me like an order or a demand.

In addition to my seemingly brash communication, I have had a back surgery, three knee surgeries, and I need my rotator cuff repaired. I can't spend my days lifting old people out of bathtubs and off of the bedroom floor.

I have been icing and taking Aleve for three days. My poor dog would like a walk that stretches further than up the block and back. This morning after getting breakfast on the table, I decided I was feeling a little better. So, I went to the grocery store and bought more food than will fit in the refrigerator. I hauled the grocery bags in from the car and through the house, lamenting the fact that I have no children to do this stuff for me.

As I reached the kitchen, I passed the shower chair sitting in the hallway. Pausing, I felt a twinge of anger in the pit of my stomach. I turned to my dad and asked if mom had taken a bath.

"Yeah," he said nonchalantly.

"She got in the tub?" I asked again.

"Yeah, she did! But I was right there," he said excitedly.

"I thought we had an agreement. She is supposed to use the shower chair. No baths."

"Well, she wanted to get in the tub," he said.

I cannot adequately explain the fury I felt. Instead of responding, I cleaned up the house, put the groceries away and decided to go on strike.

No, I cannot get up and get you something to drink.
No, I cannot whip up a cheese sandwich and grab you some chips for lunch.
No, I cannot make your dinner.
No, I cannot do your laundry today.
No, I cannot carry your clean clothes up from the basement.
No, I cannot take the overflowing recycling out to the alley.
No, I cannot make the beds.
No, I cannot clean the bathroom.
No, I cannot water the lawn or clean up the dead tulip stems or trim the dying rose bushes.
No, I cannot run to the store and get more soda and lottery tickets.
No, I cannot get your pills for you or make your breakfast or get the mail or make another Costco run or do that favor your promised the neighbor you would do knowing full well I'd have to be the one to actually do it.
I can't.
Call someone else.
Do it yourself.
Maybe when you have to call 9-1-1 to get mom out of the tub, you will start to listen to me. But for now, I am on strike.

Movie Day

We are going to the movies this morning with my aunt, my mom's twin sister. My aunt just lost her middle child and she is sad. So, for a week, we have been talking about going to the movies and out for a sandwich afterward. Having a summer break at this point in the lives of my elderly parents and my aunt is a blessing. It's part of the reason I decided to become a teacher. But getting my mom up and out of the house before 10 AM is like herding cats. I imagine it is the equivalent of having about three small children or one giant, angry teenager.

She fusses at first. Then she yells at me.

"I don't want to go to the show!" she grumbles loudly from under the covers.

"You are going to the movies, mother. We have been discussing this for a week. We are not cancelling on your sister," I demand. "I am getting in the shower and by the time I get out, you better be out of this bed."

I shower. I hear my dad rolling (with the help of his walker) into the front of the house. He slams the door behind him so the dog can't follow him and probably so he doesn't have to participate in getting mom ready to leave. Mom, who can barely stand, is sitting half naked on the edge of the bed, bent over, tossing clean and folded clothes out of a laundry basket nearby.

"What's the problem?" I ask as I towel dry my graying hair.

"I can't find a bra," she pouts.

I find one and hand it to her. In the time it takes me to get dressed, dry my hair, and apply my makeup, she accomplishes getting her bra on but nothing else.

"What's the problem?" I ask again.

"I can't find socks," she says, less angrily this time.

I find socks and hand them to her.

I let the dog out, prepare her breakfast and return to the bedroom where my mom is still not dressed. And hour and fifteen minutes has passed. Her frustration level is soaring as is mine when I march into the living room and remind my father that she is also HIS responsibility.

"You cannot disappear into the living room and remove yourself from the task at hand. She is still not dressed!" I yell at him as if she can't hear me in the other room.

He returns to the bedroom and helps her get dressed. She cries. I retreat to my computer to write. Now, we will all put on happy faces and start the process of getting out to the car. We won't argue. Or yell. We will smile. After all, the neighbors might see us.

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.

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...

Happy Mother's Day

My vivid memories of growing up are very limited. I don't remember a lot about school or hanging out with friends but I have some very strong memories of growing up with my mom. I called her Mother Nature and mother and ma. I don't think I ever called her mommy but that could be my memory failing me once again.

She would lay me up on the kitchen counter so my head would fall into the sink and she would wash my hair, usually twice because it was so oily, and I would fall into a relaxed daze. She pulled a chair up to that same counter and taught me how to crack an egg and eventually how to make pancakes and meatballs and mashed potatoes and chocolate chip cookies. She ironed almost everything, including my dads handkerchiefs, while watching "Another World" and "Days of Our Lives." When I went off to kindergarten for a half day in the mornings, she would pick me up from school, cart me home and let me iron while she folded laundry. I loved watching "Days" with her.

My mom taught me how to keep a home. It was neat as a pin and so clean you could eat off the floors (until we got a dog). She also taught me that every day wouldn't be easy. She cried in front of us, she got angry and would sometimes leave a walk it off and, while others might see that as weakness or maybe even wrong, I know now that she taught me that it was ok to FEEL whatever I felt. Feelings are feelings and nobody can say they are wrong.

I watched my mom with my baby sister (and with many kids that followed as my mom babysat them in our home). She would sit them on her lap, facing her, and she would talk to them and play pat-a-cake, holding their hands and teaching them how to clap and wave and reach to the sky saying, "SO BIG!" Watching her made me want to be a mom more than anything else in life.

She has been married to my dad for almost 50 years. Until a few years ago, she made dinner almost every night and, when my dad was working, she had that dinner on the table the moment he walked in the door. They still hold hands. They kiss each other good night and say "I love you" every single night. They taught me that even though it's hard work, it's possible to love someone "til death."

I am so grateful to have been given my mom as my mom.

Now, we work in the kitchen together. I guide her through a recipe. She can no longer crack the eggs but she is a rock star mixer. I hold her hand as she walks up steps and curbs and distances that feel a little too far for her to make it on her own. There's a little bit more role reversal as every day passes. But I wouldn't change it for anything. I am glad I am here for her like she was for me.

She is my mom. HAPPY MOTHER'S DAY MA!

Wishing for More Time

While my life rapidly evolves due to the changing health of my parents, there are many circumstances that add to the pressures of making sure their golden years are golden. Balancing my finances is the biggest challenge as I work to maintain two homes. It would be a dream to work just one job and make enough money to take care of all of us. The most fun part is creating weekly menus, grocery shopping, and cooking. I LOVE that part. If I could create menus, shop, and cook for 20 people every week, I would. My least favorite responsibility is the cleaning. Making sure my parents are living in a healthy and safe environment is a daily priority. The one thing I need more of is... time.

I always feel so pressed for time. Even when I am broke until the next payday (which is often 4 or 5 days away), all I can think about is how time is running out. The changes in my mom are becoming more and more visible. My dad has discovered a sudden burst of energy and responsibility. Yesterday, he sneaked out of the house on his own, in the rain, and drove to the doctor. He also jumped in yesterday and helped with mom's medicine. On days like that, I feel more pressure to take care of my dad better. Part of that effort is making sure my dad has time to connect with his brother.

My uncle who is a priest and a Franciscan monk, also has Alzheimer's. Six years younger, he is my dad's only brother. He was diagnosed a few years before my mom and his order shipped him off to Wisconsin to an assisted-living home specifically designed for Franciscans. I have been able to take my parents to see him twice but now,  my uncle is swiftly declining.

Much like my grandfather, my uncle has recently become a bit aggressive and this has resulted in a shift in his residence. We used to be able to take him out with us. We could go to the lake or shopping or to a restaurant. But now, he is restricted to the property and every report comes with news of more change.

This summer, we will make the 7-hour trek to Manitowoc, WI to see my uncle again. Tearfully, my dad informed me that this could be our last trip to see my uncle. I extended our plans. We will stay a little longer so my dad can just sit with my uncle. We will celebrate my uncle's 45 year anniversary as a monk. There will be a special mass. We will also celebrate my dad's 77th birthday and my nephew's 14th birthday. We will spend TIME with family. Time which will inevitably feel too short. As it does every day.

I worry that seeing my uncle will create a greater fear in me regarding the future for my mom. But I will be strong because it is what I do. And I will keep working to make sure my parents' senior years are good and safe and as perfect as possible. And I will work three jobs if I have to even though it will take away from the time we so desperately need.

The clock keeps ticking and I keep chasing after every single minute with no regrets.