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The movie, 50 First Dates, was released in 2004 so it has been a while since I have seen it, but I love Drew Barrymore and Adam Sandler. It’s about a woman (Drew Barrymore) who has short term memory loss and a man (Adam Sandler) who falls for her. But every morning she wakes up and doesn’t remember who he is. So, day after day he goes about making her fall in love with him again by repeating the first date.

gram and stacy on NYEWhen I first started living with Gram back in 2016 (“Life Changes“) she was, for the most part, able to take care of herself. She got herself up, dressed, showered, and even made her own breakfast. She read the paper every morning. I knew she had been diagnosed with dementia, and she would repeat questions, but she was doing well.

Since then, her memory and stability have gotten worse. Although she has declined physically and cognitively, she is still able to do a lot. She is able to feed herself (although I make her breakfast and bring her to the table), remember names, remember people and places. Sometimes she will surprise us all when she asks a question about something that happened the day before.

gram riding ceramic bear with arms upAlthough I have heard of Dementia and Alzheimer’s patients being mean and physically aggressive, I rarely have had that experience with Gram. She is the sweetest, kindest, and the most wonderful little lady I know (mostly). Even after five years of being diagnosed with Dementia, she still laughs, cries, and knows what she likes and doesn’t like. And if she can hear you or read your lips, she can have a relatively decent conversation.

That being said, although she continues to do pretty well, I feel like I am living the movie 50 First Dates. Day after day, at the kitchen table in Pennsylvania, we hear the story of how she replanted a twig of a tree in the backyard. She always smiles as she annunciates Grandpa saying “Do you REALLY think THAT is going to grow?” Then she smiles and says I said, “Yes, and now look at it!” And I agree, the tree is huge.

Almost every morning at our house in Florida, after breakfast she asks if she can go sit by the pool. Then she will ask if it’s warm enough. Well, 99.9% of the time it is, Gram…we live in Florida 🙂

Almost daily, Gram asks where my husband is or where my mom is. “Where’s Jeffrey?” or “Where’s Mama?”  I often hear. When I tell her, she gets a little sad, and can’t believe they are not home with us. She doesn’t understand anymore that my husband has to work and that requires him to be gone at times, and she doesn’t realize that my mom has moved to Virginia and doesn’t live up the street anymore.

She seems to have a handle on breakfast as it’s the same every day.  She eats an over-easy egg and a piece of toast with jelly. At dinner is where we can get the most frustrated. She eats the same thing day after day which is mac and cheese, however, it’s the protein that changes.  She will usually eat a few bites, but as soon as my husband and I sit down and put that piece of protein on her plate she asks, “What is This?” We tell her then two minutes later, and often after already having tried it, we hear again “what is this?”, and we tell her again. We usually tell her the truth the first few times she asks, but then we sometimes mess with her and tell her it’s mushrooms (because she hates them) or something so far off base of what is actually on her plate. She just looks at us and shakes her head, says ” I don’t think so” and then proceeds to eat the “unknown”. It is sad to see her little mind not know what something is, especially when she asks what Pepsi is because she’s been drinking it her whole life. I just shake my head and think 50 First Dates.

gram and stacy in carEvery time we are in the car and I take her down a back road or she gets into unfamiliar territory she asks “Where are we?” I tell her, but then a few minutes later the same question again. Sometimes even when we pull into her house that she has lived in for 50 years, she will ask, “Who lives here?”

Almost every night when I put her to bed she will ask, “Is this my bedroom? Is this my bed?” and “Where’s Kuma?”. Kuma is the cat. She always needs to know where the cat is. It’s funny, though, because she talks to that cat like the cat is a person. She offers her food, tells her it’s time to get up, tells her it’s time to eat and tells her it’s time for bed. And if Kuma isn’t in the bed waiting for her then it’s the question, “Where’s Kuma?” Like the cat got up and left. After she kisses me good night, blesses herself, and lays down, she always says, “Stacy, thank you for everything”, which in the end makes it all worth it.

So, my life with gram is essentially like 50 First Dates. We have the same conversations day after day, we do a lot of the same things day after day, I answer the same questions day after day, and I make her the same food day after day. Many people think it’s a glamourous life I lead. Granted, I can travel, I can sit by the pool, I can live in two states, I can visit family and yes, I have been blessed to be able to take her with me on many adventures. But the day-to-day is not glamourous and honestly, sometimes it is downright depressing.

Maybe she asks these questions just to make conversation. Maybe she doesn’t know what else to say. Maybe the logical part of her brain isn’t working anymore. I don’t know, but I do try to learn what I can about the disease, and I do try to make the best of the situation.  Either way, like Teepa Snow, says you have to try to find the Gems. Celebrate what she can do, can say, and what she can remember. That is what we try to do day after day.

gram and stacy on golf cartBeing a caregiver doesn’t mean your life is over. It doesn’t mean you have to sit at home with your loved one and watch them sleep (and boy does gram like to sleep!).  We have discovered that if you are willing to take the wheelchair, pack up the oxygen, bring an extra change of clothes, answer the same questions over and over, and say the right thing to get them in the car, you can still take that loved one with you almost anywhere you go. Yes, you may have to persuade them. You may have to trick them. You may have to pull out all the stops, just like you may do with a three-year-old, but even though it’s more work, in the end, you both get amazing experiences to cherish.

It’s all fun and games until someone gets hurt. And that’s exactly what happened. As you read in “Life Changes“, Gram loved playing Bingo and would do so every other Monday. On December 5, 2016, I dropped gram off and then received one of the worst phone calls three hours later. She had fallen on her way out of the bingo hall. It was a rainy, chilly night, and they weren’t sure if she slipped or if her legs just gave out. I raced over to the church parking lot as fast as I could, and I couldn’t believe my eyes. There was sweet gram on the asphalt, covered with blankets, crying, and apologizing. I hoped and prayed she did not have a broken hip, but it did not look good.

After what seemed like an eternity, the ambulance arrived. Gram was so upset and sorry. I kept telling her it wasn’t her fault. We finally got to the hospital and yep, you know it, it was a broken hip. The doctors were great and wasted no time. Surgery was the next day. I didn’t feel comfortable letting Gram stay in the hospital by herself. She would have no idea about insurance or her medications and would have a hard time hearing the nurses and doctors. Plus, she would have no idea what was going on. Thankfully, I have amazing friends and cousins, and they brought me an overnight bag.

stacy gram and mom at the hospitalMy mom arrived from Virginia and all three of us spent a couple of days at the hospital in a wonderful suite. Then, they sent Gram to rehab, and mom returned home to Virginia. After a week in rehab, she wasn’t really getting better and seemed to be losing hope. I decided I didn’t want her to deteriorate as my grandpa did, so I asked if I could take her home.

At first, they were hesitant, but the physical therapist came out to our house for a trial run, and Gram started zipping around the house with her walker. We decided it definitely would be better for her to be at home, but one of the stipulations was that I had to be with her 24/7. 24/7 is very overwhelming, especially since she was fairly independent up until that point. But I felt I needed to make the sacrifice.

Back at Home. It’s really hard to take care of someone who has dementia and a broken hip. There were certain movements she wasn’t supposed to do because the hip could pop out. I did my best to keep her on track.  She couldn’t do a whole lot on her own so she became more and more dependent on me. I was making her breakfast, helping her get dressed, and helping her shower.  I did sneak out to the gym in the morning, which was my alone time, my social time and my let my frustrations out time. Because I needed that hour a day, I woke up early so I would be back before she decided to get out of bed. I did what I had to do to make it happen, to keep myself sane and our relationship healthy.

gram helping with piroguesLonely Christmas. By Christmas🎄, she was walking around the house like a rock star with her walker, but I wasn’t sure if an eight-hour car ride to Virginia would be good for her. We decided not to travel and had a nice, quiet Polish Wigilia by ourselves. It was a very emotional Christmas because we weren’t able to spend it with our family, and it was our first Christmas without Gramps.  It’s amazing the little things you come to appreciate as time goes by and how much you learn to appreciate your family and the time spent with them.

gram toasting with big wine glassAlthough she was weak at times, I couldn’t believe how well she was recovering from the broken hip. She was walking around the house with her walker. She would take little rides with me when it was nice out. I talked her into going out to dinner a few times and a month later she was back at the bingo hall! Not too shabby for a 92-year-old.

But by February 2017, Gram and I were feeling pretty down.  We were around each other constantly.  She was getting stronger and able to do more, but she wasn’t fixing herself breakfast and didn’t seem motivated to do much. My life was changing as she became more and more dependent on me.

A Bright Idea. One morning, Gram mentioned going to her condo in Fort Myers, Florida. Needless to say, it sounded like a fabulous idea!! It was cold and snowy in Pennsylvania, and we were both ready for some sunshine!  We also were in need of some family time. We packed our bags, loaded up the cat in the car, and headed south. Not knowing that soon again I would be experiencing more life changes. 

stacy, gram and the cat in the car heading south

On one of our summer road trips, we stopped at my sister-in-law’s house in West Virginia. They have four dogs, three of which probably weigh more than Gram. Although Gram loves dogs, she gets a little anxious around them, especially if they jump, bark, or lick. When we walked up to the house, the dogs came running 🙂 Wide-eyed Gram said, “I don’t need your kisses.  No no no.” Then she asked my sister-in-law, “how many dogs do you have?” She seemed to be in disbelief at the number of dogs around her. Gram doesn’t usually say too much, but when she does talk, she is pretty funny and delightful. Usually…

two dogs

For the next three hours, all we heard over and over was, “How many dogs do you have?” We would say four. Then, she would count them. Then, five minutes later she would ask again, “How many dogs do you have?” She would count them again. It was funny but also sad and slightly frustrating that she just couldn’t remember how many dogs were around. Then every third time, she would say, “They have four dogs and you won’t even let me have one” with a sad look on her face. I see how parents get roped into buying things and getting pets. I mean, how can you say no to such a sweet face?

The next morning as she was sitting eating her egg and toast, she counted three dogs and she said, “Hmm, one is missing.” We were the ones now in disbelief that she finally knew how many dogs they had!

threedogs

We have learned to accept the fact that her dementia brain isn’t going to remember the short term. She’s going to ask the same questions again and again and again. Yes, we could and sometimes do get very frustrated, and we could make her feel bad by saying, “Can’t you remember, you just asked that question.” But we try to roll our eyes, laugh, and just answer the question again hoping it will sink in eventually. Sometimes, we try to make her laugh as well by giving her some off the wall answer to her repetitive question. Then, she is the one rolling her eyes at us.

I have tried to rely on the strategies I used as a special education teacher for being a good caregiver. Gram has definitely tried my patience and those around us. I mean how many times can you answer the question “How many dogs do you have?” But she’s so cute 🙂 and I have also learned I need to find and celebrate what she can do. It really doesn’t do any good to dwell on what she can’t do anymore.

If you are a caregiver or know someone with Dementia or Alzheimer’s, Teepa Snow is a fabulous resource. She is a psychologist, and she has several helpful videos about being a good caretaker. She explains how to handle stressful situations, how to understand the person with dementia, and how to diffuse aggressive situations.

I am just thankful we have amazing family and friends who understand her and just keep answering the question “how many dogs do you have?”

When I quit my job in the fall of 2015, I wasn’t sure where life would lead. I just knew I wasn’t happy, and I wanted to see the world. I also wanted to find love, and I wasn’t having any success in Virginia. As you read in the post “How Did I Get Here?“, I left a wonderful career in education to go to Thailand to teach English. I came back. I didn’t have a job and my house was rented.

Those life changes led me back to my hometown. It was winter. It was snowing. It was cold, but I decided to make the best of it. Gram and I made fires in the fireplace, and we didn’t really have anywhere to go so winter wasn’t too bad 🙂

snow covered field with pine trees

As time went on, I hung out with old friends from high school. Many of their children were in high school so, I went to local sporting events to watch them. Every time I went to a game, it was like a high school reunion! It was great to see everyone and their mini me’s.

Finally, spring arrived and my high school friends talked me into helping coach my old high school softball team. Also, to fill some time because Gram was fairly self-sufficient, I started working at J’s Ice Cream and Hot Dog Shop where I learned to make ice cream cones. It is definitely a lot harder than it looks! I felt comfortable leaving her for half the day because she would get herself up and dressed, read the paper, and make breakfast. I would work and then pick her up for the softball games. She loved seeing me coach and watching the girls play.

Stacy and Gram with mini ice cream cones

Spring was long, cold, and muddy but, we made it. Finally, summertime. Long, warm summer days and cool summer nights came upon us which was great for sleeping with no air conditioning. That summer, I hung out with one of my high school friend’s daughter. I couldn’t believe she was 21. We had the best time. I introduced her to some amazing 80’s music, and she taught me the names of some of the back roads in town that I didn’t know.

Sunset over Edinboro Lake

That fall, I worked with her at a chiropractor’s office. When we weren’t working, we were out drinking a lot together, and I was drinking a lot on my own. I decided I needed a detox. I set the goal to quit drinking for a month. With the support of family and friends, I made it 34 days without one drink!!

That fall, someone suggested that I try CrossFit Meadville. I was doing workouts at home, but I really missed going to a gym. After the first week, I was hooked! I was sore, tired, and exhausted, but the workouts were awesome and always different. I had a great trainer and the support of other CrossFitters was motivating. I was easy to coach and eager to learn. Bill, the owner of the gym, talked a lot about nutrition and eating right, and I was interested in making those changes. He definitely inspired me to challenge myself.

Stacy doing a squat clean

That year was full of life changes. I went from being a professional educator to becoming a caregiver with minimum wage part-time jobs. I moved from a big city back to my small rural home town. My social life went from hanging out with a variety of friends to hanging out with Gram, but we had some great adventures. We went to Pirates games. We traveled a lot to Virginia to see family. We ate a lot of ice cream. We took a lot of Sunday drives.

She went to bingo every other Monday, which gave me a night free of responsibility.  At first, she could get herself ready and would proudly pack her “bingo bag” with her markers and lucky charms. As time went on, she needed a little extra help but, she still was determined to go. Those Mondays off were very important to me as a caregiver, and I cherished the time off. Even though I felt a little lost, I knew I was on the right journey. Then one rainy, chilly night in December 2016 as she was leaving bingo, she fell and broke her hip. And once again, new life changes were upon me.

I have had over four years of Adventures with Gram. When I started taking care of her in February 2016 after my grandfather passed, I didn’t know how long she would last. I also didn’t know that 90% of our conversations would take place in the bathroom! But here I am. Another Friday night …in the bathroom with Gram.

pool deck at nightMy husband and our friends are outside sitting by the pool enjoying a beautiful night, good friendship, and some adult beverages.  And here I am …in the bathroom with Gram. And it’s fine. But then I ask myself “is it?” Is this where I am supposed to be? Is there where I pictured myself being …in the bathroom with Gram? Of course not, but this is where I am and this is my journey. Sabai Sabai

In the bathroom with Gram is where I am more often than I imagined. Sometimes I get down about missing certain things because I am in the bathroom with Gram, but then I try to remind myself it’s kind of like being a mom and having to put the kiddos to bed. You may miss out on what’s going on in your living room, but sometimes you have amazing, special experiences on your own when you are tucking them in tight.

Some of my favorite conversations are in the bathroom with Gram. A lot of times she repeats the same phrases. Most of the time I hear “take me behind the barn and shoot me” or “I look like death warmed over… two times” or “starość nie jest radością” which is Polish and she tells me it means “it’s hell getting old”. The formal translation means “old age is not joy”. She will talk about how she misses my grandpa. She talks about how she’s a burden and to just put her away. She tells me not to let her sit around and eat candy all day. She is really funny sometimes especially when she cracks herself up. She talks about how I am spending too much time with her and how I need to get back out to my husband. I am thankful that she is considerate of me. Of course, it’s not like she is setting any speed records but she tries. So, I spend my time in the bathroom with Gram, enjoying our conversations and hoping my ice doesn’t melt by the time I get back to my drink.

Although I have never seen it, there is a movie called “Yes Man” starring Jim Carrey (2008). There have been a few people over the years who have made reference to it saying I was a Yes Woman just like Carl in the movie because I would always say Yes. Anyone who knows me, knows I have a hard time saying no, and I do not like missing out on things. Therefore, I say Yes to almost everything. Because I have said Yes to weddings, birthdays, and family occasions, I have seen beautiful parts of the United States and the world. I must say I have really enjoyed most of the experiences, and I am glad I am a Yes Woman!

I’ve always loved traveling. Being a teacher allowed me to have a lot of time off, but not necessarily a lot of money to do the traveling. So, I chose to give up a lot of  “stuff” that way I could say Yes to the next big trip. If traveling is your passion, then you do what you have to do to make it happen.

Antigua Beach front

Because I am a Yes Woman, I have had amazing road trips across the United States and beautiful Mexican, European and Caribbean vacations for which I am so grateful. As you read this blog, you will see many fun Adventures with Gram and some great trips without her.

Being a Yes Woman sometimes can get you in trouble. At times saying Yes can be overwhelming, tiring, and stressful, I am learning that I don’t have to say Yes to everything. I am learning to value my time and to evaluate opportunities before saying Yes. I am learning to say no and to have time to recover and relax. I am getting better at it 🙂 Although it is overwhelming, tiring, and exhausting, saying Yes to becoming Gram’s caregiver has been one of the most inspiring and amazing experiences I have had.

blankBeing a caregiver has thrown a curve ball into my traveling game, but I do what I have to do to continue to make it happen. I am also beyond blessed that I found a Yes Man who loves traveling and loves Gram as much as I do. One of the best things I have said Yes to was to his proposal made to me in Chicago on his 50th birthday. So far, we have been to six countries and 15 states together. Whatever arrangements need to be made to continue our adventures, we make them. As caregivers, we know in order to be the best caregivers,  it is extremely important to take care of ourselves first. We know that getting a break makes all the difference in the world.

Over the past few years, I have learned that life changes on a dime so make the best of every day. The thing is,  life is short and we only get one shot. Take the time off and take that trip with your friends or loved ones. Having and making memories is so much better than having “stuff”. So, take a chance and be a Yes WoMan!

Stay Strong & Be Inspired, Stacy