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.

Crying

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.

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...

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.

Tired

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.

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?

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.

Thinking about all this... Stuff.

People make a lot of assumptions about my life. Most folks don't ask questions about why I am living with my parents or what kind of tasks I have taken on since moving back. They don't ask how I feel or if I am stressed out. They assume that I am busy and that my stress level is maxed out but they are wrong. I do what everyone else does to maintain a home, whether they live alone or with a spouse or significant other or with their children. I clean. I cook. I work in the yard and maintain a garden.

My parents are not yet in a place where they need help bathing or getting dressed or eating. They even do the stairs alone most of the time. But my mom's Alzheimer's has reached a stage in which she struggles to make decisions. It is time-consuming and stressful FOR HER to decide what to wear and what to eat and to remember if she already took a bath or took her pills or ate breakfast. And my dad is not very mobile. He uses a walker. He basically moves from his chair in the family room to a spot on the couch in the living room to his "puzzle room" where he watches sports and puts together puzzles. So I am here to do the day to day. It is different than living alone in my own house but I am no busier than I was before. Maybe people say they know how busy I am as an excuse for no longer asking me to hang out or go out on the weekends. And that's fine. My home is priority right now. That and walking my mean dog. :)

While my to do list is not much different than "before," my worries are very different. Every morning I get up and check on my parents. I worry that one day I will wake up and one of them will have died. That might sound morbid but that's what I worry about. I worry that they will fall down the steps or up the steps or that my mom will not make it to the bathroom in time when she is out in public. I worry that something will happen to my dad and that I will have to get help with my mom. And, I worry that something will happen to my mom and that my dad will slip into an oblivion of sadness. I worry about whether or not they are eating enough or eating well. And on the rare occasion that I do go out, I know they are sitting at home eating cheese and crackers and that makes me feel terrible.

I also worry that I will eventually end up alone, never having found a life-long love, never having had or adopted children, never having found the kind of happinesses that I dreamed about growing up. I worry that I won't be able to handle whatever comes next and I know that I don't want to handle it alone. I worry that when I am in their place, there will be nobody to take care of me. But honestly, that is the LEAST of my worries.

This is a pretty lonely life. I don't regret it now and I never will. I do miss having more personal space and shelves for all of my books and I miss having lots of friends. I miss going out every weekend and catching a ball game a couple of times a week. I miss playing ball. I miss having the kind of job that involved lots of social interaction and celebrity sightings and parties and generally fun and talented people. I suppose all of that is my own fault. But there is not a lot of time to think about all of this... stuff. Because time is short. So I shove the sadness and the loneliness to the side so I can enjoy another Hallmark movie with mom or a baseball game (on TV) with dad or just a sit on the porch for an hour. This is what we are supposed to do, right? I just wish I would have done all the other things I was supposed to do first so I wasn't doing this by myself.

Waning Focus

Mom's focus is waning.

On Easter Sunday, we sat in the first two rows at my sister's church, a wide but shallow building with extraordinary stained glass and stone-carved scenes hanging on the walls that those who grew up going to Catholic school would know as the Stations of the Cross. It's a fascinating place. Dad sat in front of the rest of us in the handicapped section and we positioned mom on the end of the pew beside me in the second row.

The priest led us in prayers and readings and songs and gave a boisterous homily about something Easter-related in his gravelly baritone voice. I am certain mom did not hear a word he said. She was watching the people around her and scratching at the tiny stain on her pants leg.

When it came time for communion, the Eucharistic minister approached the bench and before she could get the words "the body of Christ" out of her mouth, mom reached up and nervously grabbed the host out of the woman's hand and then returned to casually gazing around the church.

Now, I have to admit that I was bored out of my mind. But mom's inability to focus in large settings has become dramatically worse in recent months. We have to keep an eye on her and say things like, "Come on mom! Walk this way" to keep her attention so we don't lose her.

Mass finally ended and the priest released us as he made the sign of the cross. Mom was too busy trying to see around a plant on the alter to move her hand in a cross motion. Mom's focus is waning which means that the rest of us must be more vigilant than ever.

Baseball and the Brain

My dad is kind of a saint.

The time between mom's repetitions has shortened dramatically and her short-term memory is the worst it has ever been. The other day she asked him three times in a span of about 20 minutes if he wanted to save his leftover Chinese food. She had no idea she already asked. This type of interaction occurs on a daily basis.

This week, baseball began. My mom has always been a huge baseball fan. Before her Alzheimer's really took hold and back when dad was more mobile than he is now, my parents attended about six St. Louis Cardinals games per season. They sat in the bleachers where I had my season tickets. Each visit to the ballpark was quite the production. Donning there Cardinal t-shirts labeled "Meemo" and "Papa Joe," my parents left the house hours before game time so they could park at a nearby (and very expensive) parking lot, grab a couple of hot dogs, and catch a bit of batting practice.

Mom always lugged along a thermal bag with bottled water and often pulled a ridiculously large visor on her head to keep the sun out of her eyes. Dad tugged on one of his many ball caps and once he sat in his seat, he usually didn't move until around the 6th inning when they would pack up and head home, listening to the rest of the game on the radio as the cruised back home along the back roads.

Mom doesn't remember this season's opening day, even though we all watched the game together. She doesn't remember the walk-off win, the first win of the season. There are only three pieces of Cardinal baseball my mom remembers every day: Mike Matheny, Adam Wainwright, and Yadier Molina. The three of them have been around long enough that they are a part of my mom's longer term memory.

Now, mom still enjoys the game of baseball. She will watch every single game, keeping a watchful eye out for Yadi, especially. But every game, she has the same questions. Over and over and over, dad sits beside her and reminds her who Randall Grichuk is and tells her why Jose Oquendo is no longer standing by third base. Sunday, dad "introduced" mom to Dexter Fowler about six times and tonight, he did it all over again.

Dad is much more patient than me. He always has been. But he is especially patient now. Sometimes, dad is kind of a saint. But he loves my mom and she loves her baseball so he does whatever he can to keep their love and her love of baseball alive.

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.

Inside Her Mind

Sometimes I think there is so much going on in my mom's head that she can't focus on what is going on around her. Often when I am talking to her, she will think she has responded but she hasn't said a word.

As long as I can remember, my mom has talked to herself. When I was little, she talked out loud a lot. In my teen years, I would tease her.

"Who are you talking to mom?" I asked.

She laughed, "Myself!"

Now, however, everything is stuck in her head. Her facial expressions change and she shakes her head. Sometimes she will move her hands or even pound her hand on the table. Most often, she seems angry when she is talking to herself. It was so funny to my when I was a kid but now I worry as I see her falling deeper and deeper into her own thoughts and, on many days, unable to express herself.

My need to understand what is happening with my mom's brain has become more urgent.

As I research, I thought I would share some helpful links for others in the same situation.

http://www.alz.org/alzheimers_disease_4719.asp

http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?_r=0

https://www.alz.org/braintour/alzheimers_changes.asp

http://www.nbcnews.com/feature/maria-shriver/embedded-inside-mind-alzheimers-n179596