Alzheimer’s Disease
For years, Bob and I and our girls went to visit his aunt and uncle, Linda Knox Cole and Bobby Cole and their children Sheila and Pat, in Kennebec, South Dakota, where they owned and operated a hotel. One thing about visiting relatives who own a hotel, is that you don’t have to worry about where you will be staying. For many years, we really enjoyed going over to visit Linda and Bobby once a year. While we were there, we didn’t do anything special. We visited and played some cards. It was a very laid back, unhurried sort of mini vacation. The girls always liked going over, because they had cousins to play with. We didn’t always have a week or more to go on the trip, so more often than not, the trip would take place on a three day weekend, and would end with the girls having to go to school the next day. That left the trip home for the girls, in a full head of curlers. The good news, is that I hadn’t started curling their hair in socks yet, so I suppose that made it a little better for them. They never acted like they were embarrassed about being in curlers…even when we took pictures in the curlers.
One year, the trips to Kennebec just stopped. The hotel caught fire when a bolt of lightning hit it. While they knew the strike was close, they did not know it had hit the hotel until they smelled the burning wood from the upstairs rooms. The hotel was a total loss…at least the income areas of the hotel. The last time I saw the hotel, it was a charred shell of what it had once been. It was a sad time for everyone, because it was the beginning of change…a change that would end the yearly trips to Kennebec. After weighing the options, Linda and Bobby decided to move to Winnemucca, Nevada. While my in-laws tried to see Linda and Bobby during their snowbird days, with the onset of Alzheimer’s Disease in my mother-in-law, and the advancement of COPD in my father-in-law, their snowbird days came to an abrupt end too. After that, Bob and I saw Linda and Bobby a couple more times, and now, sadly it has been probably five to ten years since we saw them last.
During the years when we were busy taking care of my in-laws, Bobby had a heart attack. He survived and tried to make some healthy changes in his lifestyle. The one bad habit he could not give up, was his smoking, and in the end, it would be his smoking that would bring on his death. A couple of years ago, Bobby was diagnosed with Esophageal Cancer. They tried their best to fight the cancer, and hoped for a longer life for Bobby, but that was not to be. 
Bobby passed away on May 31, 2014. So much has changed over the years. Time and distance have kept family members apart, because of mounting health issues. I wish Linda had been able to see her sister, my mother-in-law, Joann, before the time came when she could not remember who she was. And I wish they had not had to go through Bobby’s last years alone too. Rest in peace Bobby. We love you and we will miss you.
Time flies by so fast sometimes, and suddenly we find ourselves a year out from an event that shook our world…the death of a loved one. It was one year ago today that my father-in-law, Walter Schulenberg passed away. He was a quiet, gentle man who loved his family more than anything else in the world. He hated the years when his job took him away from the family, because watching his children grow up was so important to him. From the time they were dating, he talked about when they would start having children. He knew that he wanted a little girl, just like his soon to be sister-in-law, Margee, who was just six months old when they got married. Of course, he wanted sons too, but he was smitten with those girls, and while his boys were his helpers, and he was very proud of both of them; his little girls were always his little princesses. That seems to be the way life is for daddies of daughters, and he was no exception to that rule.
I never met someone who was more excited to be a grandfather. When I was pregnant with Corrie, his first grandchild, he seemed to have been transferred back all those years to when his children were little. He often asked me how I was doing. He wanted to be sure I was comfortable…because I was carrying his first little grandbaby. He made it such an honor, both times I was pregnant. His children and grandchildren were so important in his life. In fact they 
were the most important things in his life…with one exception…the love of his life, my mother-in-law, Joann Knox Schulenberg.
From the time they started dating, he knew that there was no other girl for him. I have had the opportunity to read some of the letters they wrote back and forth while they were dating, and he was working in another town. He wanted nothing more than to marry her and take care of her for the rest of his life…and that was exactly what he did. All those years that they were together, he made sure she had what she needed. When she was diagnosed with Alzheimer’s Disease, he gave up much of what he would like to have done, so he could take care of her. She was his world, and to him, giving up a few little things to make sure she was going to be alright, was only natural. As the years flew by, he devoted more and more time to taking care of her, and did more than he should have in those later years…I couldn’t get him to stop overdoing it. To him, it was so important that she was always going to be ok.
The hardest thing I think he ever had to do was when we had to put her in the nursing home. It had become obvious that we couldn’t keep her safe at home, and there was no other option. He really took that hard. He was so lonely. We did our best to take him to see her, but that was hard on him too. Then he went through a series of hospital stays in a short period of time, and they left him very weak. The hospital suggested that he go into a nursing home, and he was very much against it…at first. Then I talked to the nursing home my mother-in-law was in, and they said they could take him too and they could share a room. It was a perfect plan. He could see her, stay with her, and make sure she was alright, all while he was taken care of too. It seemed the perfect plan, and in a way, I guess it was…except for the fact that he just 
couldn’t bounce back from those bouts in the hospital, and would return 3 more times before it was over. The thing that was good for him was the fact that, not only could he be near the love of his life, but before he left us, he was able to see that she would be alright. He could see that the staff took good care of her. That last year was a really hard one for my father-in-law. He was getting tired of fighting COPD. It was a fight for every breath, and he knew he was losing that fight. Still, he could not go, without knowing that those he loved…especially the love of his life, were going to be ok. Dad left us a year ago today, and while we know that he isn’t suffering anymore, we still miss him very much. We love you Dad.
My mother-in-law has had Alzheimer’s for ten years now. As most of you know, Alzheimer’s Disease steals the memories of it’s victim…especially the most recent ones. I have not always been one to feel like every part of recent memory loss is the most horrible thing that could happen. The main reason I feel this way, is that people who don’t remember that a loved one has died, never have to mourn their loss…unless people remind them. My mother-in-law talks about her husband, my father-in-law, Walter Schulenberg, now in Heaven for almost a year, in the same way as she does her daughter, my sister-in-law, Marlyce, and her parents, Robert and Nettie Knox, who have all been gone now since the 1980’s. To her, they are all still here, and she will see them later in the day. I can’t think of a better way to feel.
For her, it isn’t the middle of life memories that are missing, but rather, the recent memories, and the very distant past that elude her to a degree. For me, those are the ones that make me a bit sad. She doesn’t remember new family members, from marriages, or births of new great grandchildren. You can tell her who they are, and within five minutes, you have to tell her again. It isn’t an annoying thing, but rather a bit sad. As to her distant memories, she never really was one to relive her past a lot, so it is not unthinkable that she might not really remember those, but as a writer of moments past, that feels like a real loss to me.
Recently, while watching a television show, I got an idea. One of the characters had Alzheimer’s Disease, and couldn’t remember all the people he had helped in his career, until the other characters put together a DVD of all the people that the Alzheimer’s victim couldn’t remember. I started thinking about what a great idea that was. Maybe there was a way to give some of the forgotten memories back to my mother-in-law. The only problem I could see was that she would never be able to run a DVD player, and the staff was too busy to plug a DVD in for her all the time. It’s just too easy to forget, and then she never gets to see it.
Then it hit me. There is a way to get a great collection of pictures together, that she will be able to see every day, and no one will have to plug it in or turn it on for her. I started looking online for what I needed, and I found the perfect item. It was a 19 inch digital picture frame that has a built in timer to turn it on and off. I was so excited. We, the family bought the frame, and I have been loading pictures onto it. It now has about 2,000 pictures from different parts of her life, for her to look at when she is in her room at the nursing home. And there is still room for more. And no one has to run it. It has a timer, so it will run from 7:00 in the morning to 9:00 in the evening. Whenever she is in her room, it will be running, until bedtime.
Bob and I took the frame out to her on Saturday, and set it up. She really liked it. I was so excited about that. As I told her about some of the pictures, she looked on with great interest. Then came the moment when she knew the person in the picture, and finally the moment when she told me the name of one of her childhood horses…Star!! I was soooo excited!! I know that as she watches the frame, she will remember things about her past, at least for a little while. The digital picture frame has become the talk of the nursing home. All the nurses and aids rave about what a good idea it was. I’m just so happy that we are giving her memories back to her.
When my daughter, Corrie and her husband, Kevin were dating, there came a day when Corrie was at her Grandma Schulenberg’s house to visit. Kevin came by, and they were sitting on the front porch talking. Corrie was sixteen years old at the time, and Kevin was nineteen. It was a nice day, and they were just enjoying each other’s company, when her grandma came out of the house and said that they were going grocery shopping, and asked if Corrie wanted to go along or stay there at the house. Corrie said that they would just stay at the house. Well, apparently that was the wrong answer, because her Grandma said, “No, you are going with us!” That was the end of the story. Corrie went grocery shopping and Kevin went home.
Corrie’s grandma grew up in a different era. Not the one where dates had to have a chaperone, but you didn’t leave a young couple at a house by themselves. I’m not sure what they thought was different about a house as opposed to a car, or any other place where kids could be alone, but she apparently felt that it was her job to make sure nothing happened. Corrie was old enough to drive, and had driven herself over to their house, so she could have just locked the house and told them to go home, but that didn’t seem appropriate to her, so she made Corrie go grocery shopping, and the kids dutifully obeyed her. If you had ever been grocery shopping with my mother-in-law, you know would that it is a three or four hour ordeal, and Corrie left her car at their house, so she was stuck. I went shopping with her once, and that was enough for me, but that is another story.
The kids never told me about that occurrence, until we were coming back from visiting her in 
the nursing home a couple of days ago. My mother-in-law had been talking about Kevin a few days earlier, and with his job, it wasn’t easy for him to get the time to go out there with us, but on this day, he was able to come. With her Alzheimer’s Disease, I wanted to make sure that he understood that even though she had been talking about him, she still might not recognize him. When we got there, I asked her if she knew who all her visitors were, and she looked at him and said, “Yes, Kevin.” Kevin has been in the family longer than any of her other grandchildren-in-law, but I was still surprised. I guess that his respectful handling of that awkward moment twenty two years or so ago, made a good impression on her…that and all the other nice things about Kevin.
Most of us have watched the movie Groundhog’s Day before, and thought that it was a funny show, and it was…at least for a while. Then, it got to the point where you, like the character in the show, thought this was ridiculous. You already know what is going to happen, because it has happened over and over again. For most of us, this scenario would be a serious annoyance, but for my mother-in-law, this is her life…and she isn’t bothered by it at all…nor am I. I suppose that because most people think of Alzheimer’s Disease only in it’s negative aspects, they think that the loss of recent memory is the most horrible thing that could happen to a person, and in the area of new additions to a family, that is true to a degree, but while it is sad that this grandmother will never really remember the new in-laws that arrive from the marriages of her children or grandchildren, nor will she ever know her new grandchildren, and yes…that is very sad for us…but she will never feel that sadness. Nor will she ever feel the sadness of loss, and that is a good thing in my mind.
Most of us go through many times of loss and sadness during our lifetime, but those with Alzheimer’s Disease don’t. We can think of Alzheimer’s Disease as a horrible end of things, and since I have never seen the very end of the disease, I can’t say that it doesn’t end horribly, but between the beginning and the end of it, there can be some very funny times. Things like not wanting to go to bed until someone comes to tell them if they won a prize or not, and then when they are told that the awards ceremony is the next night, they go to bed without question. It all depends on what things they were interested in before. My mother-in-law liked the thought of winning the Publishers Clearing House Sweepstakes, so that was the illusion her mind came up with, and that was my answer to it.
I am thankful that her life was filled with good things, so that her memories are sweet and not scary, because I also think that Alzheimer’s Disease can be very torturous for those who have memories of sad or scary times…like being lost for instance. I would hate to think of that kind of a memory being the kind that was running through my mother-in-law’s head, and sadly I have seen people with the disease who live with that memory over and over again. Nothing can be done, but to comfort their worried mind…over and over again. I can only feel bad for them and for their families.
From what I have seen of Alzheimer’s Disease, every action taken by the patient has more logic to it than people know. While the person who is asking for help over and over before asking someone to let them in, has probably been locked out of the house at night before, the person, like my mother-in-law, might pour her drink into her plate, because pureed food looks like oatmeal to her. She is also known to play with a blanket or napkin or nothing at all, and yet she is doing something very specific. If you know her like I do, you realize that she is working of an afghan or a potholder or a dishcloth, because for years she made those things, and she thinks she still is. I guess, when you think about it, all they really need is someone to understand that they are stuck in a time loop.
When you lose one parent, you feel a like half of your world is messed up. You still have the other parent, but it still doesn’t feel right…doesn’t feel the same as it used to be. I have felt that kind of loss twice in my life, because when you marry into a family, you gain a second set of parents. Having in-laws can be good or bad depending on the relationship you build with your in-laws. For me it was a good relationship, so when my father-in-law passed away, it was my second dad that passed away. I have noticed something quite different with my father-in-law’s passing, from my dad’s passing.
While both mothers are still alive, and in my family, that is a more stablizing fact, in Bob’s family, it is not so much the case. Since his mother has Alzheimer’s Disease and is in a nursing home, it feels almost like she is gone from us too, in a sense. It isn’t that we don’t go see her often, because we do, but because she doesn’t have any input in family matters. It almost feels like the family is adrift at sea…in separate boats!! Everyone is busy doing their own things, and living their own lives, but that creates a feeling of disconnect in my mind. While some family members call each other and talk about things, others don’t. Some I haven’t heard from since the end of May, when we had Brenda’s birthday party. It is a bit of a lonely feeling.
Other family members, I talk to often, of course, and it is my hope that the family will regroup and become as strong as it was before. I’m sure everyone is just trying to deal with everything in their own way, but for me, it just seems like some of the family has grown farther apart from the rest of us, and I think that is sad. I’m one of those people who likes close family ties, and not talking to the family much is, well…as I said before, like being adrift at sea…in separate boats.
My father-in-law passed away on May 5, 2013, but my mother-in-law is doing ok. Alzheimer’s Disease has removed all memory of his passing. I know that many people look at Alzheimer’s Disease as being a cruel thief. I can agree with the thief part, in that it has taken her memory of recent events away, but cruel…maybe not. Her mind simply creates its own reality. In her mind he is not gone. He is at work or visiting the neighbors or out in the garage. Death means nothing to her. It has been the same with her parents, who have been gone for 28 and 23 years now.
I have long known that she lived in a world of make believe, but that fact never hit home as much as it did tonight, when Bob and I were out visiting her at the nursing home. She often speaks of those who are closest to her, and sometimes she speaks about you…to you, saying things like, “Caryn is going to be cooking dinner for everyone” when she is talking to me, or “Bobby is on his way to Grandma’s for the summer, to help with the cows” when she is talking to Bob. Corrie and Amy, work at the nursing home…at least in her mind, and my father-in-law is over by the telephone, so he will answer it when it rings. These were just a few of the recent things she has talked about, and things we are getting used to hearing.
Tonight…well, tonight was different. We were talking with my mother-in-law, and the conversation was following the normal lines…or at least, it was until it wasn’t. Suddenly she said, “Hun, can you help me get this afghan over to the sewing machine so I can finish it up.” She was talking to Bob, but to her, he was my father-in-law. At first we thought it was just a slip of the tongue, but then it happened again. She said, “Walt, you need to move that other sewing machine to the table.” We didn’t know exactly how to react. It was not the first time she had mentioned him, but it was the first time she spoke to him when it was actually one of the guys in the family. She thinks nothing of talking to him, but we know that he is gone, and the pain of that parting is still very fresh in our hearts 
and minds. We can’t be upset with her for what she says, because in her mind, it is reality, but to us it is make believe. Like it or not, we have to play along, because to do anything different is to make her relive his death over and over again.
I’m sure we haven’t heard the last of my father-in-law visiting my mother-in-law. Her mind will bring it up again, and it’s likely that her sons or grandsons will have to play the part again at some point. They will do it, as often as needed, because it is for her. They can do nothing else. They will play the part…so that she can keep her illusion that the love of her life is never far away.
For the past seven and a half years, my life has been largely defined by a series of responsibilities known as caregiving. For anyone who has ever been a caregiver, even for a short time, it is easy to understand what that entails, and what it means in the lives of those involved. Caregiving is not a job that usually becomes less demanding as time goes by, although that is not an impossibility. While caregiving is not an easy job, I can tell you from my personal experience that it is a very rewarding job. It is one that places you in a battle for life…or at least a battle to prolong life. While it is rarely a battle you can win in the end, you do win in that those final years are made more comfortable for the patient, and filled with the knowledge that you love that person so much that you are willing to make this sacrifice for them.
Now, after the passing of my dad, the recovery of my mom, the necessity of placing my mother-in-law in a nursing home, because Alzheimer’s Disease no longer allows her to stay at home, and the passing of my father-in-law, I find myself no longer in the position of being a full time caregiver. Yes, I still have minimal responsibilities with my mom and mother-in-law, like doctors appointments and visits with them, which are very important to their emotional well being, but the main responsibilities belong to others or are no longer necessary. So, I find myself wondering what do I do now that I am not a caregiver? What is life supposed to be like now? This has been who I was for so long. It was even all I talked about sometimes, as many of my family members can attest to.
A part of me is still very tired. At times during the day, I feel like I could sleep for a month, and yet, I have trouble getting to sleep at night. A part of me is ready to get back out on the trails…walking and breathing in the fresh air, and yet a part of me feels like I just want to sit and do nothing. Maybe it’s an emptiness because of no longer being needed as much as before. It seems like concentrating is very difficult…unless it’s about why we lost the battle for life, or what we might have done differently.
I know that I will get used to having more time again. And as with my dad’s passing, I will come to know that you don’t get over it…you just get on with it. I will get used to not being a caregiver, but I know too, that I will never be the same person I was before. I can’t be. I have seen too much…learned too much…felt too much…know too much, to ever be the same person I was before. I have experienced the adrenalin rush needed to hold myself together during life threatening illnesses reaching emergency levels, and making the decisions necessary to treat loved ones who can’t speak for themselves. I have held their very lives in my hands, and been responsible for trying to bring them back. And, I have lost that battle…twice. I will recover from caregiving and I will get on with it, but I will never be the same. I don’t think it is a bad thing, and I would not change any of it, except the loss of my dads, but while I would do it all again, I know that I have been forever changed by this experience.
Bob and I went out to the nursing home to visit his mother on Saturday, and very uncharacteristic of her, since she got Alzheimer’s Disease anyway, she was very talkative. She was telling us about her day…at least as she remembered it. Her story moved from one scenario to another, making little sense, unless you knew some of the characters, and the places she was talking about. The other problem with her story was that it spanned at least 6 decades, and they were all intermingled. Probably the most disconcerting part of the story, however, was the fact that she was talking about Bob and me, almost like we weren’t there, and yet at other moments, she talked to us, knowing who we were. It was very strange to feel the need to speak of myself, as someone else, so it didn’t confuse her. It was also strange to shift gears, when she asked me what I was making everyone for the dinner she had decided I was cooking.
I’m sure a lot of people would have been a little bit freaked out by this strange visit, but with Alzheimer’s Disease, that is somewhat normal. The main reason it isn’t very normal, is that many Alzheimer’s patients, including my mother-in-law, don’t usually talk so much. It was quite an interesting conversation, really. She mentioned several family members, including Bob and me, our daughters, Corrie and Amy, and two of my grandsons, Chris and Josh. She also mentioned my brother-in-law, Ron, and my nephew, Barry as well as my sister-in-law, Jennifer. Then she mentioned the names Adolph, Brady, and Cody…names that made no sense to me, and two of which will most likely always be a mystery. Adolph and his wife Loretta, apparently were good friends of my in-laws, a long time ago.
It was very strange to know that she knew who we were, and yet also had a picture in 
her memory of what we looked like 30 years ago. The two pictures seemed like two different people in her mind, so it made perfect sense that she would be talking to us and about us at the same time. I suppose many people would find that sad, and think of Alzheimer’s disease as a horrible thief, and to a degree, they would be right, but so much of this disease…if looked at with the right mindset…can be found humorous. Yes, she makes up her stories, but they are about things in her past. Yes, she doesn’t always know us. But there is a lot to be learned there too. I never knew about their friends, Adolph and Loretta, but maybe someday she will tell me a little bit more about them…perhaps, in another story session.
Today is my mother-in-law’s 82nd birthday. If you ask her how old she is, she will likely tell you that she is 65. Alzheimer’s Disease has taken away her memory of the more recent years, but she is still here with us, and that is a blessing. She was recently in the hospital, and the doctors did not expect her to survive that stay. Nevertheless, she fooled them, because they don’t know what a fighter she is. They said that she would not be able to swallow again, and that drinking water would be impossible. Now, she is eating and drinking and getting stronger every day.
When a person gets into their 80’s, you learn to cherish each birthday, holiday, anniversary, and basically every day, because you don’t know how long you will have them with you. And when they are sick, you pray that they will, make it to the next holiday, or until someone in the family can come from another state to see them. Each moment that they are sick finds you praying for just a little more time with them. You begin to understand just how precious life is…how precious each moment is.
This birthday finds us thankful that my mother-in-law will reach another year of age. The age of 82, is one that we would not have expected her to reach, just a few short weeks ago. Now, she will get to celebrate one more birthday with the great grandson, her first great grandchild, Chris, who was born on her birthday…a very special birthday present. She gets to spend one more birthday with my father-in-law, the love of her life, who himself is recuperating from pneumonia. She will get to spend one more birthday with her family, who all love her very much.
At the age of 82, we all know that this could be my mother-in-law’s last birthday. She has lived a good, long life, and she is getting tired. Nevertheless, we will rejoice in the victory that she has achieved. We will celebrate her strength to fight her way back from the brink. We will laugh and sing and smile with her in celebration of one more birthday, and just a little more time. Happy birthday Mom!! We love you!!
