Alzheimer’s Disease
This past summer, my sister, Cheryl Masterson; my cousin, Pam Wendling; and I went to visit Pam’s dad, our Uncle Bill Spencer at the nursing home where he lives. Uncle Bill has dementia, probably Alzheimer’s disease, and so how the visits go, depends on the kind of day he is having. The day of our visit was a really good day. Uncle Bill may not have known who we all were, and even some details about our lives, but he had some funny stories to tell us…one of which was how his brother, our dad, Allen Spencer had never gotten married!! That one was new to my sister and me, who are the eldest of Dad’s five daughters with his wife, our mom, Collene Byer Spencer. I guess Uncle Bill’s mind went back to the pre-Collene era of Dad’s life.
Uncle Bill also told us about the days on the family farm. I think my sister and I always 
thought of it as a small little patch of land…maybe 5 acres or so, but Uncle Bill told us that the farm was actually 80 acres. The farm was big enough to grow enough vegetables to sell them exclusively to Stokely Foods Inc. Stokely foods is a large company and it was founded on August 18, 1943, later merged with Van Camp’s, and then sold the Stokely brand to Seneca Foods in 1985, and the Van Camp’s brand to ConAgra in 1995. I guess you could say that the Spencer farm got in on the ground floor of Stokely Foods, Inc. This was really interesting to us, because it was confirmed by Uncle Bill’s cousin, Les Schumacher. I suppose Cheryl and I should have assumed that the farm was bigger than we thought, because they grew hay, and it took days to get it all stacked, but when you didn’t grow up on a farm, I guess you don’t really have a good way to gauge such things. I think we should have had some inkling, however, 
because the pictures we have seen should have told the tale…to some degree at least.
As our visit with Uncle Bill came to a close, we found ourselves very sad about the speed with which the time had passed. We don’t get to see him very much, and he is such a precious person in our lives. He was really in rare form, laughing and smiling a lot. There were no awkward moments when no one knew what to say, and Uncle Bill carried much of the conversation, which was absolutely wonderful. Our only regret is that we can’t get up there to see him more often. Today is Uncle Bill’s 97th birthday. That’s amazing…97 and going strong. Happy 97th birthday Uncle Bill!! Have a great day!! We love you!!
My mother-in-law, Joann Schulenberg, like her mother before her was blessed to be able to share her birthday with her first great grandchild, Chris Petersen. It was something the two of them really liked, and over the years, many joint birthday parties were held in their honor. It was a tradition that started when Chris’ mom, Corrie Petersen, my oldest daughter, shared her birthday with Joann’s mom, Nettie Knox. The pictures we have of those moments are something Chris and Corrie will treasure forever, just as their were treasures for their great grandmothers.
Unfortunately, that tradition will not be carried on through the next generation, because while my grandson Chris and his fiancé, Karen Cruickshank are making my husband Bob a great grandfather, they will miss his birthday by at least a month. Nevertheless, Chris will be the great grandchild who will make my mother-in-law a great great grandmother, but she did not live to see that day, something that makes us all very sad. She 
lloved being a grandma, and loved those sweet babies, so I know she would have loved this next level of her ife, and totally loved the little girl who is on the way in early June.
When his great grandma was in the hospital for the last time, we all went up to see her, and Chris wondered if it would be ok to take pictures with her, the baby’s ultra sound, and him, so that there would be a picture for his little girl. He had been hoping for pictures of her with the baby, and also for five-generation pictures with her, his grandpa, his mom, the baby, and him. After Chris asked me about the pictures, my sister-in-law, Brenda Schulenberg suggested the same thing, so we all decided it should be done. That visit was hard, because his grandma was in and out, and Chris wasn’t sure he would be able to understand what we were trying to tell her. When the visit was over, we all left her room, except Chris. He wanted a few minutes to officially tell his great grandma that she was going to be a great great grandma…even if she wasn’t awake to hear it. Then, a little miracle happened. As Chris was talking to her, she opened her eyes and looked right at 
him. Chris didn’t wait another second, but told her, “Grandma, I just wanted to let you know that you are going to be a great great grandma. My fiancé, Karen and I are having a baby girl in June.” His great grandma looked right at him, and she smiled with delight! Chris knew that she knew, and it brought tears to his eyes. It was the ultimate gift for both of them, and I am so glad that she got to know this great news before her passing just a few days later. Today would have been her 87th birthday. Happy birthday in Heaven Mom. We love and miss you very much.
My husband’s aunt, Margee Kountz is his mother Joann Schulenberg’s youngest sister. When Joann developed Alzheimer’s disease, Margee was a vital part of our team of caregivers for her. Whenever I had to take my father-in-law, Walt Schulenberg to the doctor, Margee happily gave of her time to come and sit with her sister. People may not realize just how vital their visits can be. When a family of caregivers are working hard to keep their loved one in good health, the caregivers can find themselves feeling exhausted. That visit, while it make seem such a little thing, allows the caregiver time to get necessary things done, and a little bit of time to take a break from the work, and at least a little bit of the stress of caring for their patient. Caregiving is about love. You do it because to love your patient, but it is not without it’s stresses, worry, and exhaustion. The nice thing about the Respite Care worker is that they are a huge part of the team of people who perform two services…companionship for the patient and time off for the caregiver. They are priceless, and Margee always stepped up to help.
My mother-in-law, Joann passed away on January 4, 2018. We are no longer caregivers or respite care workers. She is at peace, but we are left behind to mourn her loss. For Margee, it means that she is the oldest member of the family…something she did not want to be. Not because of the age, but because it has been so hard for her to say goodbye to her older sisters. I think that in many ways she feels like “the last of one standing,” and that’s not what she ever wanted. I know the feeling. It is not so very much different from being orphaned, which happens to all of us when our parents pass away. Still, we hope our siblings will live, at least, close to as long as we do, because when your parents and your siblings are gone, you feel truly alone. Of course, Margee isn’t really alone. She has her children grand children, and a great grandson too, but there is just a strange feeling that goes along with being the last of the original family.
While Margee was a big part of taking care of her sister, and the caregivers who worked during those years, I’m not entirely sure she ever knew just how important she really was. She was, sort of, an unsung hero. I’m sure I could have taken my mother-in-law to my father-in-law’s doctor’s appointments, but it would have been 
a huge undertaking for one person. Margee took half of that load off of me, and gave my mother-in-law a much needed social session too. She can to visit, and it gave my mother-in-law a new perspective on life. Their conversation stimulated her mind some. They talked about the old days, their kids, all the fun they had. They didn’t share their growing up years, because just six months after Margee was born, my in-laws were married. Nevertheless, there was much to talk about. Each could compare their childhood to the others, maybe. It wouldn’t really matter what they talked about, because after all, the visits were Margee’s gift of love for her sister. And that is what makes respite care priceless. Today is Margee’s birthday. Happy birthday Margee!! Have a great day!! We love you!!
My mother-in-law, Joann Schulenberg has always been a tough lady, and I suppose that is why we found it so hard to believe that she would not win this final battle in her life. She bounced back so many times, when we all thought she was going for sure, but in the end, it was not the things we expected to take her life, like COPD or diabetes, that actually did so, but rather kidney failure, complicated by congestive heart failure. Through all of the many episodes of illness in her life, we were amazed at the strength she displayed while fighting her way back to where she had been before getting sick. This final battle would be different. She was tired, and she was ready to go home to Heaven. And while we were very sad and hated to let her go, we could not ask her to stay. She had suffered long enough.
Throughout the years that Joann was my mother-in-law, she was an inspiration to many people. She had the ability to do so many things…knitting, crocheting, sewing, canning, and oh, her baking!! Mom could make a “Murder Cake” that could easily destroy any diet, because it was irresistible. “Murder Cake” was a chocolate cake with so much gooey, yummy fudge that the frosting became a part of the gooey cake. Maybe it was called “Murder Cake” because it murdered your diet. It was also my mother-in-law who introduced me to Squash and Pancakes, a dish that sounds like it should be awful, but one bite, and you are hooked. My husband, Bob; daughter, Amy; and I look forward to summer just for the squash and pancakes.
Having been raised in the country or small towns, the country was where Joann felt mostly at home. It was where she raised her children, and where one of them still lives today. She felt like it was easier to keep track of all those kids, if she had them out in the country, and when the family lived in Mills while the older children were in grade school, she finally told my father-in-law, Walt, that he needed to get the family back out in the country. And so he did. For the first 23 years of my marriage into the family, that is where they lived, and then because of health issues, they made a trade for a house in Casper…right on one of the busiest intersections in town…13th and McKinley Streets. While my mother-in-law said she hated the noise of the traffic and many emergency vehicles, she sure loved to look out the window to see what was going on out there. She secretly enjoyed the flurry of activity that was always going on out on the busy streets, and while Alzheimer’s Disease 
might have taken her most recent memories away, she always had her favorite pastime…people watching, whether they be in traffic, walking, or on television. My mother-in-law’s Alzheimer’s Disease was the kind that kept the funniest things in life in the forefront of her memory, and she could say the funniest things. While she might not remember our names, she always knew that her children and grandchildren belonged to her, and for that we are forever grateful. Rest in peace Mom, we miss you already, and we love you forever.
It’s hard to believe that four years have passed since my father-in-law, Walt Schulenberg passed away. Of course, if you asked my mother-in-law, his wife, Joann, he is still here. Alzheimer’s Disease has taken away the memory of his loss, for her anyway. Sometime I think her loss of that memory clouds my own feelings about to too. She often calls my husband, Bob…her son, Walt, and of course, he pretends that he is. Or she asks about him, and we tell her that he went to Walmart. In many ways, her loss of the memory of his passing has kept him closer to all of us. Pretending that he is still here makes is seem real somehow, because the mind makes it seem so.
Dad was the glue in the family. Mom might have been too, had Alzheimer’s Disease not taken that spot from her. Dad’s passing brought a different family unit with it. We don’t get together quite as often now. It makes me sad, because I know how much he loved his family, and how important it was to him that we stay close. We have stayed close, just not in quite the same way as it was when he was still with us. Family was everything to him, but of course, he understood how busy people can get. The main thing he would have wanted us to do, is to be there for the love of his life, and in that respect, I know that he knew before he ever left, that we would take good care of her, and so we have.
My father-in-law, was a sweet loving man who loved to joke with the family. He loved it when everyone was together and having a great laugh. It made him feel good to know that no matter what, our day had been like, we could come together and enjoy each other’s company. He was a great dad, grandfather, and great grandfather. He loved those babies. I suppose that is why they had six kids of their own. Dad loved to see the kids playing at his house, and he was never too busy to get in there and play too. The years since his passing have flown by, and that makes me especially sad, because I miss him very much. I wish we could go back in time and have our loved ones back, but that just can’t be. I know you are happy in Heaven Dad, and that we will see you again, but I sure miss you in the here and now.
When a person has Alzheimer’s Disease, everyone tends to feel sorry for them…or so they think. In reality, we don’t feel as sorry for the patient as we do for ourselves. The patient doesn’t seem to know that they are forgetting things, at least not after they are a little way into the progression of the disease. In fact, they truly live in an alternate reality, and sometimes it is a much nicer reality than we live in. If someone in their family has passed away, one of the others becomes that person on occasion. That’s how it is with my mother-in-law, Joann Schulenberg. Her husband, who is my father-in-law, Walt Schulenberg passed away on May 5, 2013, and yet, she talked to him night before last. Of course, she was talking to her son, my husband, Bob Schulenberg, but he like the rest of her family has adapted to her altered reality, so that night Bob became Walt…if only for a minute, because that is how long it takes for that reality to pass and he becomes Bob again. I suppose people might think that strange, but it is actually kindness. She doesn’t have to grieve. Her deceased loved ones are never gone from her. They are there in the people around her, and she is happy.
My mother-in-law does not notice the passage of time, and if she does, it sometimes seems longer than it was. She might tell you that she hasn’t seen you in a year, when in reality it was the day before. Or she might say that you were just here, when you have been out of town for a week. Time is based on her own perception of it at the time, and that’s ok with me. As long as she’s happy, I’m happy.
As her birthday approached this year, I’ve been telling her that February is almost over. She doesn’t always think that is possible, and I can relate to that. Time really does fly by. So, on Saturday when I told her that her birthday was coming, she said it couldn’t be, because we hadn’t had Christmas yet. Now I would love to tell you that I had a quick come back for that one, but sometimes she catches me off guard. I told her Christmas had passed, and it was February. Thankfully she accepted that answer and the conversation moved forward. Yesterday, as we were waiting for the bus to take her back to the nursing home after he check up with the 
doctor, I asked her what today was going to be. She didn’t know, so I told her that it was February 28th. She perked up. I asked her what that day was, and she said that it was her birthday. I was pleased at that, so I thought I would take it one step further. I asked her how old she was going to be. She didn’t know, so I suggested that she take a guess. Well, I guess that the moment of clarity was over, because she said, “I’m 50 something.” She was only 36 years off, but it doesn’t really matter anyway, because you’re only as old as you feel…right? Happy birthday Mom!! Have a great day!! We love you!!
My father-in-law, Walt Schulenberg would have turned 87 today. In the three years and almost four months since he went to Heaven, I can say that I have missed him very much, and yet it’s been like he never really left. Alzheimer’s Disease has taken the memory of her husband’s passing away from my mother-in-law, along with the passing of her parents and her daughter. It isn’t a bad thing for her, because she doesn’t have to experience the grief the rest of us have to go through. Nevertheless, because of her condition, I…we, the family have had to keep up the charade that Dad, Marlyce, and the Knox grandparents are still alive.
There is a song that Tim McGraw sings about a girlfriend that broke up with her boyfriend because he wanted to move away and she didn’t. He never quite got over her, and in his imagination, he saw her in all the places he traveled. For the man in the song, I’m sure the visions were somewhat torturous, but for my mother-in-law, they are a blessing. She sees Dad in some of the men at the nursing home, in her sons and even grandsons, and she has it in her mind that he is simply in the garage, at the neighbors, or at Walmart. When she asks about him, I always tell her that he is at Walmart, and he will be back later. That satisfies her, because she knows that he would never leave her. And we know it too.
I have to wonder if Dad ever thought about all the places he would be see after he left for Heaven. We tend to think that when we pass away, we will only live on in the hearts of our loved ones, and that’s true, but the mind is a funny thing. Our imaginations can place our loved ones in places they really aren’t…whether our mind is sharp or not. There are many times I can see my mom and dad, my father-in-law, sister-in-law, and grandparents in many memories that I have filed away in my memory files, but I think that most of the time, my memories aren’t nearly a vivid as my mother-in-law’s, and that’s ok, because it allows my father-in-law to keep his promise, never to leave her, alive in my mother-in-law’s life. Happy birthday in Heaven Dad. We love and miss you very much.
Alzheimer’s Disease is a thief…I’ll give you that, but as I’ve tried to convey to several people, it is not, in my opinion, the worst thing that could happen to a person. I know that sounds so odd, especially to those who feel that Alzheimer’s is a horrible disease that steals the mind/memory of their loved ones. It does do that, eventually, but if you take a moment to view it differently, you might be surprised, as I was, to learn that it is not as bad as you thought it was. Most people are stricken with Alzheimer’s Disease later in life…at a time when many of them feel that their life is over. They aren’t as active as they were. They have more aches and pains. They begin to lose loved ones, and eventually that brings grief to most of us. They might even feel depressed. I don’t say that Alzheimer’s Disease alleviates these things in all people, but it did for my mother-in-law, Joann Schulenberg. I know that in her later stages, much of her memory will be gone, but maybe it won’t either, because she has had Alzheimer’s Disease since 2004 that we are sure of. That’s twelve years, and those old memories are still there. It’s just the new memories that she doesn’t keep, and still, I don’t think that is a bad thing.
With all the negative aspects of Alzheimer’s Disease, there are a few aspects that stand out to me, as very 
good things. My mother-in-law was always busy doing things. She had a routine. She wasn’t super active, but she knitted, sewed, crocheted, canned, cooked, and baked. These were the things that gave her a feeling of self worth, and oddly they aren’t gone now. If you ask the nurses and aides at the nursing home where she lives, you will find that when it is time for dinner, she tells them that she will be cooking it. She will pick up the blanket on her lap and begin “working” on her crocheting…often using her oxygen tubing as her crochet hook. She tells me about her grocery shopping trips to town, and the things she buys there. She feels no grief for loved ones now in Heaven, because to her they are still right here. She informs me that she will wait to eat dinner until Walt (my father-in-law, who passed away May 5, 2013) gets home. Dinner can’t wait that long obviously, so I just tell her he is at Walmart, in the garage, or at the neighbors, and said for her to eat without him. He might even be at work, although he retired many, many years ago. She talks of her parents, her daughter, Marlyce, and family members who live too far away for visits, as if they are still here, and yet when her daughter, Brenda visits in the morning, she doesn’t remember it later that day. Still, Brenda knows she was there, and that is what is important. She made her mom happy.
I know too, that when Bob and I, or my daughter, Corrie Petersen and I leave her side, she doesn’t remember that we were there either, but we know that we were there, and while we are there, she knows that we are there. And that is really what matters anyway. I guess it’s all in how you look at Alzheimer’s Disease. You can grieve the changes, or be thankful for her, that she is missing nothing. All the memories she needs are still in there, and they peek out once in a while…and it’s good enough. Is it really necessary for her to remember all the sad things? I just don’t think so, and I will keep them from her for the rest of her life, by telling her what she really needs to hear that day. It makes her happy, and happiness is all that matters.
Every year…these days anyway, we have to let my mother-in-law, Joann Knox Schulenberg know when her birthday is. Even then, she won’t remember it. That’s what Alzheimer’s Disease has done to her. I suppose many people would think that is terrible, but really for her, it ok. Yes, there are things that Alzheimer’s has taken from her, but there are things it has given her too. She often tells us that she is 65 years old, when in reality, she is 85 years old today. Just think of how nice it would be to be ageless. She can pick whatever age she chooses, and that’s how old she is that day. Wouldn’t we all love to be able to do that sometimes?
Mom has lived a full life. While she had some health issues that we all expected would 
take her first, she has nevertheless, outlived my parents and my father-in-law. Many people would think that she has no real quality of life, but if you knew her, you would know that she always was a people watcher. That makes the activity around at the nursing home ideal for her. She doesn’t like to go outside when it’s cold, so now she doesn’t have to. She spends her days watching television, and often with her imaginary crocheting…which isn’t so different than when she was at home, except that she really did crochet then. Still, she thinks she is, and that makes her happy.
Speaking of happiness, there is one other thing that Alzheimer’s stole from her…grief. She has lost her parents, a daughter, and her husband, but to her, they are in the other room, at Walmart, or at the neighbor’s house visiting. She never experiences sorrow. To me, that’s not a bad thing.
I know that none of us want to have Alzheimer’s Disease, or have a loved one who does, but in reality, at least in this case, there could be a good side to it. When you can live a life free of burdens, responsibilities, and sorrow, life could be considered good. As long as her needs are met, I’m ok with it. It is my wish for her to be happy for the rest of her days. And if she’s happy…I’m happy. Today is my mother-in-law’s 85th birthday. Happy birthday Mom!! Have a great day!! We love you!!
For my husband, Bob’s Aunt Margee Knox Kountz, there would never be a time in her young memory when she didn’t have a brother-in-law. Her older sister, Joann Knox Schulenberg got married when Margee was just 4½ months old. Of course, this is not a normal occurrence in families with only three children, but my mother-in-law, Joann was almost 16 years old when the first of her younger sisters, Linda Knox Cole was born, and almost 18 years old when the second of her two younger sisters, Margee was born. Due to the number of years between the births of the girls, almost like having two families, my mother-in-law was preparing to get married when her mother was pregnant with the her youngest child. So in all reality, Margee was barely born before becoming a sister-in-law. My father-in-law thought Margee was so cute. He told my mother-in-law, in some letters written while he was working in another town, that he wanted them to have a little girl just like Margee. She was very special to him, and of course to her sister, my mother-in-law, Joann too. I know Margee was not the only person to ever become a sister-in-law, as such a young age, and of course, there are some who are born into that position, but usually they come from bigger families. I just think it would be a little strange to grow up a sister-in-law from such a young age.
Over the years, much has been required of Margee. She was a single mom for as long as I have known her, raising her two children Dan and Sandi and eventually helping out with her grandchildren, while parents worked, or as in the case of her son, Dan’s children, stepping in to help raise them after his beloved wife, Darlene passed away in 1998, when her children were Zech and Staci were about 4 and 2 years old. That was a terrible time for those children and their dad, and Margee, along with Darlene’s parents, stepped up to help them get through it, because as we all know, you don’t get over it, you just get on with it. No, life has not been easy for any of them, but with Margee’s help, these kids have done ok.
Margee stepped up when she was needed most, but then, that is what she does. Whenever a situation arises that leaves someone she loves in need of help, Margee is willing to help in whatever way she can. Whether it is with the little ones, or when her sister needed someone to be with her, because she could not stay alone anymore because of Alzheimer’s disease, or after the passing of a loved one, Margee always steps up. Margee is always someone you can count on. She always comes through for you in a pinch. That is the mark of a wonderful person. Today is Margee’s birthday. Happy birthday Margee!! Have a great day!! We love you!!
