Everything is Preparation

Six years ago at this time, my family was moving my dad into a rehabilitation facility so he could regain his strength and learn to walk again after having a hip replacement. Mom had started showing definitive signs of her Alzheimer's at the same time.

Every morning, I was driving mom to the nursing home to sit with my dad while I went to work. In the evenings, I left work and headed back to the nursing home where we would eat dinner with dad and stay with him until about an hour before bed. When dad was ready for bed, I would drive mom back home, log on to my computer and work until about 11PM before hitting the sack and starting the process all over again.

While it was a difficult transition for all of us, I am grateful for how far we have come since then. To a degree, life is harder for us now. Mom has no real decision-making ability any more, even though she is still largely self-sufficient and dad is using a walker. But I have left my home and I am living with them which is a situation for which I would have never been prepared had we not experienced it a bit back in 2010.

I never fancied myself the kind of person who could take care of my parents but it is my primary duty to ensure they are safe and healthy and able to enjoy the time they have left on this earth.  I am still learning. Every day, I see something else that needs to be changed or cleaned or replaced in the house to make their home more manageable or easy to live in for all three of us. And I am constantly learning how to navigate the challenges that come when the child is, generally, in charge of the parents. I would never want to do 2010 again but it confirms for me that everything is, indeed, preparation for something.

Happy Birthday Dad!

Every morning, I make his coffee and get the newspaper from the porch. He eats an orange and a banana, while he has his one cup of black coffee and reads the front page, the obituaries and Family Circus. Then he heads to the living room to say his rosaries and man the remote. (The remote control is never more than a few inches within his reach.)

Every Saturday, he hands me $10 and his winners. I take them to a convenience store not far from the house where I pick up his lottery tickets for the week.  I also purchase our weekly supply of Diet Dr. Pepper. Panic ensues if I have Saturday morning plans that don't mesh with this weekly errand.

He is a television connoisseur of America's Got Talent, St. Louis Cardinals baseball, Blues hockey and reruns of Everybody Loves Raymond. He seeks out new Hallmark movies for my mom and no matter how many times it airs, he will watch Ocean's Eleven EVERY SINGLE TIME it is on TV.

Some days, he will ask for a cheese sandwich for lunch. Other days, he prefers braunschweiger. Always drinks water at dinner. Never helps clean up. Unless there are big pots to wash. Then he will dry but only for my mom. If I am cleaning, I am on my own.

He worked for 56 years before he retired, starting his career at the age of eleven. That's why he never wanted my sister and I to work as teenagers. He broke his back for us so my mom could stay home and we could have fun.

My favorite memories of us when I was little are a little blurry. I don't remember much but I do remember rocking with him in his blue chair and getting up before dawn to go to our grocery store with him. We would leave the house around 4:30 AM and when we got to the store, he would stack potato sacks up in the back room near the heating vent so I could go back to sleep for a while. Then he would let me have the run of the store. People thought he spoiled me but, in my opinion, he was teaching me that I really could DO anything I wanted to do. He never told me something wasn't possible.

He was determined to make sure I went to college. We didn't have the money for it but he knew we could get there if our grades were good enough or if we worked hard playing sports. My sister was the smart one. I played ball. My dad came to every one of my volleyball and basketball games. Even in college, he showed up as often as possible. I can still hear him yelling, "Way to go!" When my sister and I graduated from college, even though it took me a long time, he was so proud.

After he retired, my dad spent his days taking care of my nephew who is his new pride and joy.
Before the walker became a primary assistant in his mobilization, he fished often and one day per month he ate lunch with his friends from high school. Now he mostly stays in the house. Sometimes you will catch him on the front porch in his socks. Putting on shoes seems silly when he isn't going far. If you see him, you should absolutely say hello and, if you have time, stop for a conversation. He would love that.

This month we celebrate his 77th birthday. What a milestone! So many accomplishments behind him. At least 1000 more viewings of Ocean's Eleven in his future.

Happy birthday, Dad!

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

Keep 'Em Busy

Mom has been lost in her own head a lot over the last couple of weeks. She often sits, just looking at her hands. This past weekend, she spent some time with her siblings which was tremendous therapy. She didn't seem to participate in a lot of conversation but she enjoyed being around them which lightened her spirit a great deal.

I have become the creator of tasks. I invent easy things for her to do just to keep her busy. Dad is not as easy to convince to participate. He prefers lounging on the couch ALL DAY LONG and doing nothing more than watching "Oceans Eleven" for the 700th time. We sort a lot of things. The last few days, folding laundry served as mom's main responsibility. I even had her refold some things.

I am looking for suggestions for more ways to keep them busy so if anyone out there has a list, please pass it my way. We have to keep mom's mind working so it won't just stop any time soon.

Mom Loves Baseball

Mom loves baseball. She enjoys most sports, in fact. She is the one who taught me how to play basketball. She would challenge me one-on-one in the alley on the hoop a few doors down or whoop me repeatedly in games of H-O-R-S-E. But mom has a special relationship with baseball, especially the St. Louis Cardinals.

Me, mom, & dad at a game 2 years ago.

"My grandparents were huge Cardinal fans," mom shared. "Anytime they were playing, we had the radio on. We would sit in the yard with a bucket of beer and listen to the game."

My almost 80-year-old mom has been listening to or watching the Cardinals her whole life and now, she is just as dedicated and loyal as her grandparents. It really upsets her if anyone tries to assassinate the character of her team. She would never say anything bad about them.

Mom and dad walking to their seats at the
baseball hall of fame induction ceremony.

Her favorite players are Adam Wainwright and Yadier Molina, mostly because she no longer recognizes the guys on the team. Even if they have been on the team a few years, she can't remember them. During today's game, she repeatedly said, "I've never heard of that guy" even though they both had been on the team for a while. The grief that comes with her Alzheimers is directly related to her inability to remember recent events, people, etc. The joy, however, comes in her ability to remember stories from her childhood that we have never before heard.

The family at a game in the bleachers
a few years ago.

She loves watching sports because, while the rest of us might be looking at records and standings, mom doesn't have to remember what happened last game in order to enjoy the current game. It's also relatively easy for the rest of us because she knows how the game works, she understands the rules and she doesn't ask a lot of questions, aside from, "who is this guy?"

Today she made a request. She wants to sit in the "green seats" at Busch. She wants to eat in the dining area and sit in the expensive seats and have somebody wait on her. There is no way I can afford that on my teacher salary. I can barely afford groceries. But I told her yes. ABSOLUTELY. If I have to drive 12 hours shifts for Uber to make it happen I will. I want to give her that experience just once. It is the least I can do.

Turn Back Time

So many days, I wish I could turn back time. Often it's for obvious reasons like "I'm getting older and haven't done some of the things I really hoped to do in life." But most days, it's because I am afraid of what comes next.

Within the last few months, I have grown acutely aware of the circle of life as I have watched my parents deteriorate in areas we do not often consider. My compassion for old people has broadened tremendously and I believe now, more than ever, that everything is truly preparation for something later on down the road.

Arthritis cripples mom's hands while Alzheimer's paralyzes parts of her brain. Her crooked fingers, no longer able to grasp many objects, fail her as she clings to the pickle jar. She wants pickles even though it's not yet 10 o'clock in the morning. She navigates the kitchen as if she is 6 feet wide. Short, awkward steps designed to usher her around a begging dog on the floor beneath her.

"Mom," I stop her. "You have plenty of room to get through. You are not that wide and your feet are not that big. Just walk. The dog will move."

She doesn't believe me and continues to shuffle sideways past the dog and to the table. She plops down onto the wooden chair that shifts slightly, almost dropping her on the floor. Dad watches without comment, without assistance. He ignores her struggles. Just like every other day.

I have always gotten easily frustrated with my dad. Even more so now. "Help her!" I yell at him sometimes. But he is afraid of falling so he sits nearly all day every day. He moves from the couch to the bathroom to the kitchen to the couch. He is so afraid he will fall and break a hip and never come home. He is losing feeling in his feet and can barely carry them around any more. He rarely wears shoes. (I can relate. I have no feeling in my left foot and most of my left leg. So I feel vulnerable at times too.)

I just wish we could go back ten years. Get them on a regular exercise plan. Help them to eat healthier. Be better prepared for the difficulties life throws at us now. And yet, I don't make time to do those things for myself because I am too busy cooking for them, cleaning for them, and making their days as simple as possible.

I also wish I had a partner, a friend, a spouse to walk through all this with me. But, alas, another thing I forgot to make time for... If only we could turn back time.

Teenagers Again

In the living room, ice cream wrappers were scattered across the coffee table among empty chip bags and a plastic carton that recently served as home to vanilla creme-stuffed cookies. As I moved through the house, empty beer bottles and stacks of dirty dishes met me in the kitchen.

"I was gone for about ten hours," I thought. "What the hell happened?"

Slowly, I picked up the remnants of my parents' day at home alone. I threw out the trash, washed dishes and prepared dinner for that evening. As we gathered around the table, we talked about my day at work and then I finally asked the dreaded question.

"So... what did you guys do today? It looks like the house was filled with teenagers on spring break," I said.

Mom and dad laughed. Mom defiantly put her fork on her plate, leaned on the table with her elbows and replied, "You know, I used to spend a lot of time keeping a clean house. I just don't give a shit any more."

We Oughta Get Some Tide

Walking through the aisles of Target, my mom and I read our list of items needed and pulled them off the shelves and into the cart. She likes to push the cart because it relieves her from the embarrassment of walking with a cane. I hold on to the front end so she doesn't push too fast and lose her balance. She doesn't complain like I did when I was little.

"NO! I got this. I don't need your help." I yelled.

She just strolls along. We work as a team.

"I think we need some laundry detergent," Mom reminds me.

"Yeah, I think we have that on the list, don't we?" I ask her, knowing it's holding firm at number three on the white piece of notebook paper she has in her hand.

"Oh ok," she says relieved.

We pace through a few more aisles. She is getting in her only exercise of the day while I am exhausted from teaching all day and cooking dinner and walking the dog.

"We probably need to get some washing powder," Mom says.

There are days when my mom will use a phrase from a long time ago or refer to something in a way I have never hear her do so in my life time and I will suddenly see the disease rearing it's ugly head in the nicest and gentle-ist of ways.

"Ok," I agree. "That's a few rows down here." I point ahead to the front of the store.

Quickly, I grab an outrageously priced gallon of milk from the dairy section. While she peruses the ice cream. She chooses chocolate and we continue on our route toward the cleaning products. We turn down the laundry aisle.

"Oh!" she says loudly, "We oughta get some Tide."

There are other days when the constant repetition of words or questions or phrases grates on my nerves. It frustrates and agitates and I have to continually remind myself that it's not her fault. I have to willfully suppress the desire to say, "yeah, you just said that" or "we already talked about that" because I don't want to hurt her feelings.

"Yep, I was thinking the same thing," I said, hauling a bottle of liquid Tide into the cart.

"Good," Mom sighs loudly.

A Day Out

Mom is so cute. She is going out today with a friend. That never happens. People rarely visit. Nobody comes and picks her up to take her out, except my sister sometimes.

So today, she was out of bed early, which almost never happens. The woman who cuts her hair is coming to get her, taking her to cut her hair and then taking her out for lunch. She is all dressed up in a red sweater that I gave her, probably 15 years ago. She has the scarf on that the hairdresser gave her for Christmas. She doesn't care that it is warm outside. She is wearing her dress shoes. She is clearly excited.

I am nervous about letting her be without us and in the care of someone else. But I am happy for her. She is changing so quickly. The ‪#‎Alzheimers‬ is beginning to take more of her. And so many people who she loves are missing out. Have fun mom.

The LONG ROAD to the Car

Balancing an angel food cake in the crook of my elbow, I picked up another cake carrier with my left hand before slinging my black and white chevron bag filled with birthday gifts over my right shoulder.

"Are you ready?" I asked.

"Yep!" my dad responded.

"Oh no," my mom said. "I need to go to the bathroom first."

Dropping my bag to the floor, I set the cakes gently on the table and ran to the front of the house to grab the dog so she wouldn't run toward the front door when mom came back in to go to the bathroom. If the dog escaped, she would be gone forever.

Mom shuffled into the bathroom while I put the dog on my bed. Suddenly, I heard dad's walker scraping across the front hallway.

"Dad!" I yelled. "Don't go outside until we are with you."

"I'm not," he lied. "I'm just getting ready to go outside."

"Ok, I am ready," Mom interrupted.

I ushered her toward the front of the house, placing her cane in her hand. Once again, I loaded my arm up with cakes, grabbed my keys and pulled my bag up over my arm. I hurried to the front door. The dog was secure but I had to make sure that no parents escaped the front door without me.

"Let me run all of this to the car and then I will come back up to the house to get you," I said firmly.

I packed up the car and rushed back to the front porch where I helped my mom down the first set of steps, followed by holding my dad's walker still on every other step while he leaned his full body weight on it to descend from the porch. Slowly we walked to the second set of steps where we repeated the process. Once they were both firmly standing on flat land, I ran back to the car and opened the doors for them. We loaded up. I buckled mom's seat belt and then jumped into the driver's seat.

We were finally  ready for the 15 mile ride to my sister's house for dinner which took us as long as it did just to get in the car.

Until next time,

Michele

A Little Help from Some Friends

Research is my favorite hobby. When I realized my parents were not going to get "better" and that my role in their life was changing, I starting reading as much as I could about taking care of them. Nobody tells you that some day, your parents will be your responsibility and they certainly don't tell you what you will have to do, how to do it or how long you will have to do it. Here are some links for those of you in the same boat. Consider it a little help from some friends. (All links were updated at the time of publishing.)

Huffington Post's CARING FOR ELDERLY PARENTS is a series of articles and links that come in handy. http://www.huffingtonpost.com/news/caring-for-elderly-parents/

AARP is a great resource for older people but also for those who care for them. Here is one article: http://www.aarp.org/home-family/caregiving/info-09-2013/my-life-as-a-caregiver.html

Of course WebMD is a reliable source. It is also great when your dad refuses to go to the doctor. I don't recommend SELF diagnosing but diagnose away when it comes to stubborn fathers. http://www.webmd.com/healthy-aging/features/role-reversal-caregiving-for-aging-parents

While we are on the health track, you can always count on the MAYO clinic too: http://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/aging-parents/art-20044126

Finally, here are some resources from PBS: http://www.pbs.org/wgbh/caringforyourparents/

This is obviously not a comprenhesive list but as time passes, I will continue to share any resources that might be beneficial and I would appreciate you doing the same in return.

Until next time,

Michele