young adult caregiving Archives - Page 3 of 3 - Inspired & Strong

While Gram has been limited in what she can do and how fast she can go, she has usually been up for an adventure. She goes where we go. When we do something fun or go on an adventure, people always ask, “what did you do with Gram?” We can’t leave her home alone so we take her almost everywhere we go. Our friends know when we come to visit, it’s me, my husband, Gram, and even sometimes the cat.

As you read in “How Did I Get Here“, I have been taking care of Gram for almost five years. In that time, Gram has probably flown on more planes and been on more adventures than she had the previous 91 years of her life. And for that, I am thankful and blessed. Gram goes where we go, and I am sure we probably wear her out, but she just keeps ticking like the Energizer bunny. So strong and inspiring.

Although we know we need a “Break from Gram“, we also know if she goes where we go, she will enjoy it. We all will. Sometimes she takes more coaxing to start the adventure, but almost every time she says thank you and has a huge smile on her face at the end. Since 2016, she has hiked Cooper’s Rock, done shot ski’s in Copper Mountain, sat on the beach in the Outer Banks and Virginia Beach, been on our boat for over 140 hours, sat in between us on the golf cart, and spent hours in the car driving back and forth from Florida to Pennsylvania. Whether our adventures are up and down the East Coast or just a jaunt in the car to the nearest ice cream shop she always seems to have a good time.

Then it happened. This summer, Gram got weaker. It all seemed to have started with a sore on her ankle. Then her right leg was numb so she was getting up several times a night trying to “walk it off.” I was so tired and frustrated. Getting up to walk around on a numb leg just isn’t a good idea. It was then that I started doubting my abilities as a caregiver. Could I continue doing it and keep her safe?

She became more and more wobbly and unsteady. One morning she fell and hit her head. We ended up having to take her to Med Express for stitches. By the time we got there, she didn’t even remember she had fallen.

About a month later, we had five days of respite care (through Hospice), and although we wanted her to go where we went, we also wanted a few days away. Well, when we picked her up 4 days later, she still had the same socks on she went in with. They had her in a hospital gown instead of the clothes I sent with her. Her food was to the side of her bed and completely untouched. She wasn’t up, dressed, packed, or even close to being ready to go home. I was there 30 minutes getting her out of bed, to the restroom, washed up, and into her clothes. Not one person came by. Next, I realized her toothbrush was still in the wrapper. I was LIVID, to say the least.

After that, gram got weaker still. She started having trouble walking even short distances. She started using a walker. Because she had been in the bed for so long, we had to make her walk short distances to try to gain some strength back.

Towards the end of summer, her congestive heart failure started filling her with fluid. She was having a very hard time breathing, and we were scared she wasn’t going to make it. She was so weak, and we were worried we were going to lose her. Hospice was wonderful again, got her some medications, and Gram, the superwoman that she is, nursed her way back to health.

Gram definitely isn’t as strong as she once was and it definitely is getting harder on us as caregivers. She is slower, she is more forgetful, she is weaker, and she is even having trouble standing up. We are so blessed to have had all these wonderful years with Gram, but caregiving is getting harder and harder. She still goes where we go, but it takes a lot more effort and takes a lot more time. She gets worn out more quickly. She needs a wheelchair more often than not. She doesn’t want to go as much anymore either. And we realize it is hard for her and on her body. Sometimes we wonder if we are pushing too hard or expecting too much.

Over the past two months, I have realized that Gram doesn’t really want to get out of bed anymore. Even when we were visiting her daughter and great-grandchildren, she would say “just leave me in bed.” It hit me that she didn’t realize that she was missing time with the kids or her own daughter. Even though she asks about my mom and the kids all the time, she showed little effort in wanting to spend time with them and that made me so sad. I know in her heart she wants to be a part of it all, but in her dementia brain, she could care less.

This realization made us start seriously thinking about getting extra help with Gram. We found a lady who seemed perfect and jumped right in helping Gram, but three days later she quit saying the job was more difficult than she had anticipated. This made us realize that it was time to consider a memory care facility. We do not want to do this by any means, but we can’t take the chance that a caregiver is going to quit on us again, forcing us, and Gram to start over again with another new face in the house . We are also wondering if Gram just wants to sit and do nothing. Does she try so hard to keep moving because she doesn’t want to disappoint us or let us down?

Although I can’t imagine taking her to a facility and dropping her off, we are not confident that we can keep her safe at home. We are so torn. I have been crying on and off for two weeks now. I took her to get her hair done and she could barely make it to the door. We took her to the store, and she could barely get in the car. We took her to sit out by the pool and she tried to get up by herself and fell. We cannot keep our eyes on our 24/7, and we just don’t know what to do. We also know Gram has lived an amazing life, and we want to live ours, too. Does Gram just want to sit in a chair all day? Does she just want to dream of her lost loved ones? Are we pushing her too hard to push herself? We understand that this may be one of the hardest decisions we have to make, and we really don’t want to make. We are scared and nervous and worried about how she will adjust. We are scared, nervous, and worried about how we will adjust. But it appears “life changes” are on our doorstep.

Has anyone had to make this type of decision? What did you do? How did you decide?

In Adventures with Gram

Day After Day

October 6, 2020 8 Comments

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.

When 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.

Although 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.

Every 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.

Being 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.

In Adventures with Gram

The Broken Hip

September 1, 2020 1 Comment

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.

My 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.

Lonely 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.

Although 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.

In Adventures with Gram

How Many Dogs Do You Have?

August 18, 2020 3 Comments

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…

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!

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?”

In Adventures with Gram

Life Changes

August 8, 2020 No Comments

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 🙂

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.

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.

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.

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.

In Adventures with Gram

In the Bathroom with Gram

August 8, 2020 5 Comments

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.

My 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.

In Travel Junkie

Yes WoMan

August 8, 2020 No Comments

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.

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.

Being 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 50^th 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!