"What man of you, having a hundred sheep, if he loses one of them, does not leave the ninety-nine in the wilderness, and go after the one which is lost, until he finds it? And when he has found it, he lays it on his shoulders, rejoicing. And when he comes home, he calls together his friends and neighbors, saying to them, 'Rejoice with me, for I have found my sheep which was lost!'"
Luke 15:4-6
May 11, 2016
I feel impressed to write about a subject that is not necessarily of a spiritual nature, nor is it uplifting or fun; but I think sometimes we need to be open about things that we're going through or have been through, in order to help others who may be walking that same journey, or have to walk it at some point, or know someone who is going through it. I'm going to share about my father-in-law's battle with Alzheimer's and the things that we have learned from this. I am sharing this with my mother-in-law's blessing and approval.
Stan was a brilliant man; and when I say "was", I truly do mean "was". He was a mechanical engineer, owned his own business where he designed and built custom machines for companies, and was quite good at what he did. Clients would contact him saying that they needed a machine that could do something in particular, and Stan would come up with ideas and design what they needed, then had employees who would build it. It was amazing how his mind worked and how ingenious he was in doing this. It was a true gift and amazing ability that he had been blessed with. It is difficult to say "was" and speak of him in the past tense regarding his talents and intelligence, and many would want to argue that he is still that way; but the honest truth is, Alzheimer's has stripped those things away from Stan, and all those abilities and intelligence are now gone.
About a year or so before he decided to retire and close his business, Jon and I started noticing things that weren't right with his dad. At first, we thought perhaps it was due to a carbon monoxide leak that they'd had in the shop and that it was the effects of that. But then things progressed and Stan would do or say or act in a way that was not in line with his normal behavior. He would design something, then forget that he had done so and redesign it again. He would occasionally say things and we'd shake our heads and wonder, "What in the world is he thinking?!"
Stan and Diane retired in 2008, sold their shop building and equipment, and moved to Owasso. They bought a house from Diane's nephew and began doing some remodeling on it, and Stan still was trying to do a few little projects on the side. Jon and I, as well as his siblings, really began to notice things that were peculiar, and began to suspect that he had Alzheimer's. Diane never said anything, and we hated to bring it up, so we weren't sure if she had noticed what was going on, or if it had happened gradually and she really hadn't clued in on all the changes we were seeing.
Finally, Diane emailed and let it slip that she really wanted to go somewhere but felt like she couldn't leave Stan alone. Aha! My opening for confronting her about this had come at last, so I took advantage of it. I let her know that all her kids were aware that he was having problems and suspected Alzheimer's, and had known for quite some time, so she needed to be open and let them in on what was happening so they could help and lend support. Diane was shocked, and had no idea that we had noticed the problems that Stan was having, and thought that they had been able to hide it and cover up. Up to this point, Stan and Diane were very private people; in many ways, even with their own children. They were extremely independent and took care of all their personal business and problems and physical ailments on their own, without sharing much about it with anyone, including family. My family was very different and were very open with one another and shared everything! I knew that they couldn't walk this path alone without the aid and support of their kids. They would need their kids, and their kids would need to be a part of this.
To make matters worse, Diane had already dealt with Alzheimer's with her mom. When Jon and I were dating, Grandma Cox was showing signs of this disease. Right before we got married, she had to be moved to assisted living, then eventually had to be moved to the full-time nursing care. She was very docile and kind and gentle during her journey with Alzheimer's. Jon and I went to visit her a few times in the nursing home, and she was always happy to see us, but never knew who we were -- even her grandson, Jon. She passed away within a couple years after we got married.
When someone is showing signs of Alzheimer's, it is often very difficult for the spouse or the children to acknowledge what is going on. At first, it is easy to excuse it as being old age. Alzheimer's is such a difficult disease, with no cure, and you know that the journey is going to be very hard for the one who is afflicted, as well as the family. You know that there will very likely come a time when that person will no longer remember your name, and may forget who you are all together. You know that you are going to lose "who" that person really is, long before their body dies.
As time progressed, Stan began showing more and more symptoms and doing things that were totally out of character for him. Diane made an appointment and took him to be tested for Alzheimer's. The test results verified that yes, he had this disease; and that he no longer had the capabilities to drive. Through the test they were able to identify that he could look one direction, then look the other and immediately forget what he had just seen the first way he looked. That made it dangerous for driving! Taking over the driving and having to take Stan's driver's license away from him was a difficult task! He didn't understand why, no matter how many times or how many ways we tried to explain it. He thought Diane was trying to be controlling and not wanting him to do anything. In many ways, he appeared normal to other people, but to family who were around him often, we could see the changes and were having to deal with the transition that those were bringing.
Diane had to hide the car keys to prevent Stan from taking off by himself while she was showering or in the bathroom or out in the backyard. One day, Jon and I were in Missouri and I got a phone call from Diane. She was sobbing and proceeded to tell me what had happened. She had to run an errand and left Stan alone for an hour or so while doing so. Up to that time, he had been fine when left alone for short periods of time. She got back home, and Stan was setting in the living room watching TV. At some point later, they were out in the backyard and she saw something behind the house covered with a tarp. She went over to investigate, much to Stan's dismay. Underneath was a pink, little girl's bicycle. Stan finally admitted that while she had been gone, he had walked to Walmart -- which is probably a mile or so from their house. At that time, he still had a bank card and carried a little cash in his wallet. He had bought the bicycle -- not comprehending that he had bought a pink one that was for a little girl -- and had proudly ridden it back home. He had to walk/ride through a couple of busy intersections and over an overpass, and through areas of traffic. He thought that since Diane wouldn't let him drive a car, then he would "show her!" and ride a bike instead to get around. We're sure that he was proud as could be and probably beaming from ear to ear, thinking that he had gotten away with something, riding that bicycle home! Don't you know that he got some strange looks from people?!
At that time, I called my cousin who had lost his father to Alzheimer's. I asked how they had dealt with the situation when Bill could no longer drive. I was searching for advice and any info I could get to help us! He told me that Alzheimer's affects people differently, so it's hard to say what will work; because what works for one person won't necessarily work for another. When my uncle, Bill, got to the point where he could no longer drive it wasn't a big issue. He enjoyed having people drive him around! Overall, he was generally content. He spend hour after hour watching the Bill Gaither Homecoming videos.... over and over and over again! On the other hand, Danny's father-in-law had Alzheimer's and he displayed a lot of anger and would become violent. Danny said that one time, he and a friend took his dad to a Springfield Cardinals (minor league) baseball game. Bill thought he was at a St. Louis Cardinals game and grinned from ear to ear the entire time. They bought him a hot dog and he had mustard dripped all down the front of his shirt; but he was happy! He was getting tired, so they left about halfway through, but Bill didn't realize that the game wasn't over.
Sometimes you have to do things that make the person happy, even when they get mustard all over their shirt and you have to wipe off their face and hands for them, when you're out in public, and not see the last of the game. Life, in many ways, becomes about bringing as much joy to their days as you can, and less about yourself. Alzheimer's take over the life of the entire family and affects everyone.
One thing that Jon and I learned from this was; if we ever see an older adult doing something that seems out of character for someone their age, to offer assistance, because they may have Alzheimer's and need help; and there may be family somewhere worried about them. After this incident, my sister, Janie, was driving through Tulsa in an area where there weren't a lot of houses or businesses. There was an older gentleman who was standing alongside the street, and he appeared to be lost or confused. She called 911 and the dispatcher said that they'd send a car out to check on him to make sure he was okay. We don't know the outcome of that situation; but if he did have Alzheimer's, he possibly could have gone for a walk or thought he was heading to a store and become confused and lost.
Stan began waking up around 4:00 or so in the morning and would get up and quietly dress, not waking Diane. He would then walk to a Reasor's Supermarket, which stays open 24 hours a day. It's not far outside their neighborhood, and there wasn't a lot of traffic that time of the morning; but we were worried that he would take off and get lost or forget where he was going or go the wrong direction or fall...... The cashier's there had became acquainted with them, and Diane gave them her number to call to let her know when he went up there. A few times, he didn't know how to get back home so they'd call and Diane would go pick him up. Other times, he would be too tired to walk back home and need her to go get him. Diane had to begin sleeping on the couch, with her cochlear device in so that she could have sound (she is deaf without it), in order to hear Stan when he got up and be able to distract him from leaving the house. They took a few very early morning trips to QuikTrip for coffee during this time.
Often, it's little things like this that people, who have never dealt with or been around Alzheimer's, don't think about or realize happens. For quite some time, Stan could visit coherently without showing signs of memory issues. People would think that he seemed fine, and think that we were either exaggerating his symptoms or would not really believe that anything was wrong with him. "Well, I get forgetful too; it's just old age! That happens to everyone!" There is a huge difference between old age symptoms and occasional memory lapses and Alzheimer's; and we knew that this was not just old age issues that Stan was dealing with.
Many years ago, Stan had cut out the wood to make a spinning wheel, but then work and busyness of life distracted him from ever building it. When he retired, he began working on it from time to time. As the Alzheimer's began to manifest itself more and more, we could see that it was getting more and more difficult for Stan to concentrate and remember how to use tools that he'd used for most of his life. Each time that we went to visit, Jon would always go out to the workshop and check on the progress of the spinning wheel. There would be weeks when nothing had been done on it, although Stan had spent hours out in his workshop "working" on it. Other times, there would be a little progress. Jon would go out at times and his dad would be out there working. When Jon walked in, his dad would be standing there staring at a specific machine or tool like he had no idea how to use it. Stan did finally finish the spinning wheel, which was the last project he was able to do. His goal was to enter it in the Tulsa State Fair, and he won a blue ribbon. The spinning wheel turned out beautiful! But after that, Stan's argument would be, "If I can make something as complicated as that spinning wheel, than I don't have Alzheimer's!"
I cannot tell you the arguments that he has presented over the past couple years to try and convince us that he does not have Alzheimer's: the doctor asked him questions without giving him time to answer; Diane was in cahoots with the doctor because she just wanted him to have Alzheimer's; that "his rememberer" could remember things, and if he had Alzheimer's, then he wouldn't be able to remember anything; he even tried to convince Jon and me one time that Diane was really the one with Alzheimer's, and she put him in the nursing home because she didn't know what she was doing.
For a year or so after the initial diagnosis, Stan was able to live at home and Diane care for him. They were still able to have a sense of normalcy, in many ways. He was able to attend church; they would go to the park to take a walk and feed the ducks; and she could occasionally leave him for short periods of time in the evenings. Diane was in the process of writing a book, so had joined a writers group to help keep her on track, as well as read the chapters and give opinions on things she needed to rewrite or do better. She was still able to attend her weekly evening meetings, for the most part, and Stan be too tired to do anything other than sit in his recliner and watch TV. Honestly, the writing of her book, (which has now been published and is wonderful!), saved her sanity, and also helped distract Stan when he wanted to do things that weren't feasible. He was very proud of her for writing the story of their German friend who had lived through WWII. He wanted Diane to finish her book, so when she told him that she needed to work on her book, that would keep him pacified and distracted. That also helped distract him for the first few months when he was in the nursing home; which I will write about next week.
In November of 2014, Stan came up with the idea of throwing a surprise 70th birthday party for Diane. She had no idea what was going on, but knew that he was spending long periods of time out in his workshop, then found out that he was making lots of phone calls. Stan called me one day and he had this huge elaborate plan for the party. It was going to be at their church, he had talked to a woman in the church about the food, he had someone who was going to play the violin as she walked in, he had figured out what he wanted everyone to do when he and Diane walked in and how he was going to get her there, etc. He had put a whole lot of thought into it. I knew that he didn't always follow through on what he said, so I had no idea if he really had talked to anyone at his church or who he had contacted; or if these were things he had "thought" he had done, but had never actually done. I didn't want the night of the party to arrive, then Stan and Diane get there to find that there were no people there and no food, and Stan be disappointed. He would have never believed that he had failed to follow through on his plans, and would have thought people hadn't cooperated.
I called the pastor of the church and asked if he had heard anything about this. He knew a little about it, and invited me to come to the church and meet with him and Diane and Stan's Sunday School teacher; as well as his mother-in-law, who was the lady whom Stan had put in charge of the food. Come to find out, his mother-in-law had also been diagnosed with Alzheimer's. She had moved to Owasso in order to live close by him and his wife, so they could help her out and take care of her as the disease progressed. At that point, Diane had had to confiscate Stan's credit/bank card so that he couldn't buy "things"; and she only let him have a small amount of cash at a time (which later she had to stop doing). Stan had asked this woman to buy a decorated cake, have food and drinks, not thinking about the cost. Some of the ladies from the church were glad to help with the food, cake, and decorations, so we gave them the money to purchase everything that they needed for the party. The party went off without a hitch, although it wasn't quite as elaborate as Stan had imagined and was somewhat toned down. Diane was very surprised and thrilled that Stan had thought to do that for her. He was thrilled that she was so happy and surprised, so everything turned out great. Lots of family and friends came, and it was very nice.
What many people don't realize with this disease is that when the symptoms start manifesting more and more, the family have to constantly be on guard and follow behind that person at all times to know where they are, what they're doing, what they're planning; as well as trying to discern when the time is right to make them stop driving, not allowing them to have access to money or credit cards, etc. It's tough! You want the person to feel independent and be able to do as much for themselves as possible for as long as they can; but you also don't want them to get hurt or do something that could hurt others (like driving a car!); or to bankrupt your checking account by buying frivolous items that they "think" they need at that moment, but that absolutely makes no sense to anyone else.
This gives you a small taste of what life was for the year after Stan was officially diagnosed. There were many good days, but also many difficult days. It's kind of like riding a roller coaster; which I hate. I hate that feeling when you're going up an incline, knowing that as soon as you get to the top the speed is going to pick up and you are going to go downhill fast and your stomach is going to drop. That's kind of what life is like with an Alzheimer's patient. You know that there are going to be moments when it's like the roller coaster topping the hill and dropping quickly. You're not exactly sure when it's going to happen, but you are constantly on guard, knowing that it will occur. You also don't know exactly how it will manifest itself; anger, deception, moodiness, lying, being argumentative, pouting..... It often catches you off guard, because you may have had several days that had gone smoothly, so you started letting your guard down.
Without having the Lord to lean on, it would make a difficult situation even more so. Diane, as well as Jon and I, have often prayed that God would give us wisdom in how to deal with Stan, grant both him and ourselves peace, show us what we need to do to make things easier and better for him, and to strengthen and comfort Stan. Jon and I daily pray for both Stan and Diane. We discuss what we can do to make their lives easier and how to be able to best help them. I give Diane a shoulder to cry on, be a friend to her, and lend her my ear when she needs to talk. Sometimes she needs advice, and other times she just needs someone to listen. I know that Jon's siblings also lend their support.
One thing that you can do for a family member of someone who has Alzheimer's is to be a friend. Don't judge their decisions, don't criticize, but just love them. Love the person who has this horrible disease. Let them talk about past memories, even when you've heard the same stories over and over again.... and the stories begin to get mixed up..... and the facts are confused and don't make sense. Don't try to correct them, or tell them that they're wrong in what they remember, or ask questions that will confuse them. It doesn't matter if what they say is incorrect! It doesn't matter if you've heard the same story numerous times! Ask about family vacations or work they did in the past or various places they may have lived or things they enjoyed doing in the past.
If you have a family member who is ever diagnosed with this horrible disease, which I hope you never do, those weeks after the diagnosis are crucial. The person is dealing with their diagnosis, don't want to believe that this is happening to them, and are scared. They know that there is no cure for this and are still somewhat aware of the fact that this is going to be life-changing. Assure them that they are loved! Over and over again, Diane would tell Stan, "I love you forever and always!" She assured him that no matter what happened, her love for him would never change. He needed that reassurance.
Honestly, Jon is not a demonstrative person, and showing affection doesn't come naturally to him.... well, other than with me. I told him that he needed to start hugging his dad and saying, "I love you." Stan needed to hear that, and Jon needed to say it. It was somewhat awkward at first, but has become easier with time. Jon now will always hug his dad and tell him that he loves him every time we see him; and sometimes even do so with his mom. Even if it's not something that you've done in the past and it feels uncomfortable at first, make a habit of doing this, because it really is vitally important. Each week that we go visit Stan I will also hug him and tell him that I love him, and will always assure them that we will be back to visit him in a few days. They need to know that they're not going to be left alone or forgotten.
Pray for peace of mind and comfort for the one who is suffering with this disease. Also, pray for the entire family. They will face decisions and situations that they never anticipated, and will need God's strength, wisdom, and help daily.
(Next week I will write a continuation of our journey with dealing with Alzheimer's.)
I'm sure Loretta will write more about it next week. But Alzheimer's is exhausting. Many people would describe my dad as suffering from Alzheimer's. He is, sometimes, especially when he sets his mind on doing something he can't. But my mom has also been suffering from it. And the rest of us have been hurt by it, too.
The real suffering came when Dad stopped needing to sleep. He seemed confused that Mom kept sleeping all the time (that is, at night). Sometimes, he would try to wake her up, since obviously something was wrong with her. But most of the time, he would let her sleep, make himself some coffee, and go on excursions, like Loretta mentioned. Eventually, he got to a point where he only slept about 30 minutes each night.
So, Mom would wake up alone, worrying about where Dad might be. If you wake up scared every morning, you can't get much rest, even when you do sleep. So, Mom wasn't getting much sleep, and that sleep was mostly restless. She seemed to age 5 years over the course of a year.
In many ways, the process was amazingly similar to our sister-in-law's, when her husband had a brain tumor. It did turn out to be cancer, and it affected his brain in much the same way as my Dad's Alzheimer's disease. In both cases, their brains were damaged bit by bit. They both started making odd decisions, they both tried to make sure their wives were taken care of to survive without them (probably part of any terminal diagnosis), and both started having difficulty following even simple conversations. And that is just the start. I'll let Loretta go into more, next week.
Corn Dip
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2 cans whole kernel corn, drained |
1 teaspoon cumin |
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1 can Ro-tel, drained |
1 teaspoon garlic powder |
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1 package cream cheese, softened |
1 teaspoon chili powder |
Mix all ingredients together. Serve with Fritos.
Happy Birthday today to my sister, Janie! May your day be special and your year be blessed. Last year was quite a year! You became a temporary mama/grandma to two sweet foster boys; you had a house fire; and the church you pastor was left at a standstill regarding moving forward with the remodeling of their property. I pray that this year you will experience abundance in every area of your life. May the relationship that you've built with your two baby "grandsons" and their mom continue to develop and grow. May you get to enjoy being inside your home again and it be filled with blessing and peace. May the church move forward and everything be settled; may all the permits be approved and the remodeling be completed. Lord let your fire fall and revival consume our church and community! May the anointing of the Holy Spirit be stronger upon you and your ministry than ever before. May your latter years be greater than anything you've ever experienced in your former years!
Nothing is too small for God to care about or too big for God to tackle. - Christine Caine
We love you!
Loretta & Jon