"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!'"
May 18, 2016
Last week I wrote about my father-in-law's diagnosis of Alzheimer's, and some of the issues that we dealt with for the year thereafter. This week I would like to write about what had transpired this past year and how the journey has become more difficult, in many ways. I apologize in advance for the length of this newsletter, but want to go ahead and finish writing on this particular subject this week. I will also say that I'm writing this from the perspective of Jon and myself. I'm sure that Diane and Jon's siblings would have other things to add or perhaps even have different viewpoints or stories to tell; but this is from our experience.
In February of 2015, Stan had to have an outpatient back procedure done. Jon and I drove his parents to the hospital and stayed there with them during this operation, where they basically glued two bones together; then afterwards we drove them home. Being under anesthesia, even for a short time, greatly affected Stan and caused an immediate downward spiral.
Stan pretty much stopped sleeping, which meant that Diane could get no sleep. We didn't know if this was something that would be short-lived, due to the affects of the anesthesia, or if it would be something that would go on long-term. For the next week, Jon and I spent a few nights with his parents, with his brother coming and giving us a break a couple times, so that Diane could get some rest and be able to care for Stan during the day. Honestly, what we witnessed during that week made us question whether or not Stan would be around for much longer. It also made us realize that Diane could no longer care for him at home. Jon and Ken both had jobs that they were responsible for and couldn't put their lives on hold to continue taking turns spending the nights caring for their dad. What Jon and I experienced during those nights that we were caring for his dad exhausted us, and we knew that it had come to a point where we had to encourage Diane to look for full-time nursing care.
Here are some of the things that we endured with Stan that week: Jon had to help his dad to the bathroom every single time, back him up to the toilet, instruct his dad to sit down, and yank his pants down as he was sitting. Diane also had to do that during the day; and one time when she was bending over to get his pants down, Stan peed on her head. Stan thought he needed to use the bathroom about every 10-15 minutes, and would argue that he had to go, even when told that he had just been; so you can imagine how tiring this whole process became. Sometimes Jon would be helping him to the bathroom and Stan would try to pull his pants down and pee in the living room floor or in the hallway. Sorry if this is too graphic, but this is what real life was like!
This is what our nightly routine looked like: We would arrive around 8:00 or 9:00. Diane would head off to bed shortly thereafter. She was sleeping upstairs, and would take her cochlear device out so that she couldn't hear anything and be able to sleep deeper and rest better. We would put Stan to bed around 10:00. He would be back up by 10:15 or so, thinking that he had slept a full night and it was morning. We would hear him rustling around in the bedroom and Jon would go check on him. Stan would cheerfully say, "Good morning!" Jon telling him that it wasn't morning, was still dark outside, and that he had only been sleeping about 10-15 minutes meant nothing and made no difference. From that point on, Stan would be up and down almost continually until morning. He would lay down in the bed, think he needed to use the bathroom, go lay back in the recliner in the living room, want coffee to wake him up, go to the bathroom, go back to bed, get up to use the bathroom, come back into the living room, want something to drink, go to the bathroom........ At that point, he was sleeping probably about half an hour in a 24 hour period. He did this for the next several weeks, even after moving to the nursing home. We have no idea how his body was able to function on basically no sleep for such a long period of time.
During that week, Stan also didn't recognize me most of the time. He would walk into the living room, see me setting there, and ask Jon who I was.
One night, Stan was determined that he was going to run up and down the stairs to get exercise in order to build up his strength, and help him to use the bathroom. He could barely even walk by himself without stumbling and was using a walker or having to hold onto someone to keep his balance. We were worried if he tried to go upstairs that he would fall and undo everything in his back that the surgery had just accomplished. There was absolutely no reasoning with him. Jon had to literally sit on the stairs and block them, to keep Stan from trying to run up them by himself.
Prior to his surgery, there had been a couple of times when Stan had fallen and was unable to get up, so Diane had to call for help. Once was in the bathroom and another time he had fallen off the bed. She called their grandson, who is a police officer in the town where they live, and he and another guy came and had to lift Stan up.
Moving Stan to a nursing home and making that decision was tough, especially for Diane. That was her sweetheart for over 50 years, and admitting that she could no longer give him the care that he needed was very difficult. Sometimes there is a stigma connected with putting someone in a nursing home; as if it is a disgrace or that you don't love that person or don't want to care for them any longer. During that time, I told Diane that she was doing the most loving thing for her husband that she could do. She was making sure that he was going to get the full-time nursing care that she wasn't trained to give him; then that would free her up so that she could focus on just loving Stan and spending time with him. She looked and finally found a place that had a locked-down Alzheimer's unit, which was what was needed. It is fairly close to their home, so is convenient for her to be able to go visit him. She told him that he needed some specialized care for his back and to help him sleep better, so she was taking him to a place where they could take care of him and help him get stronger.
The adjustment to the nursing home was a difficult one, especially when Stan did start getting a little stronger, due to the full-time care he was receiving, because he was then convinced that there was no longer anything wrong with him and he was "over" the Alzheimer's.
Off and on, Stan has tried to convince us that he doesn't have Alzheimer's. He has wanted to move in with Ken and work at his machine shop. He has wanted to go home. He has wanted us to take him to the park for walks. He has wanted to go back to his workshop and use his tools. He has argued and been frustrated and angry, which is understandable, because in his own mind, there is nothing wrong with him. There is still much that he can remember, especially family vacations they took when the kids were young or machines he built at his shop years ago, and he has argued that his "rememberer" still works so that means he doesn't have Alzheimer's.
One day Jon and I walked in for a visit and Stan was waiting for us! He immediately began a confrontation about him working for Ken and why he doesn't have Alzheimer's anymore. He started yelling at Jon and getting right in his face asking, "Do you think I can do the work? Do you.... do you?" Jon had to tell him no, he really didn't think he could. We saw that this was escalating and there was nothing we could say to make things better, so we left. We have learned that leaving is sometimes the best option when Stan gets angry and wants to start a fight.
This breaks our hearts and is difficult for us on so many levels. This is Jon's daddy; as well as Ken's and Gayla's! This is Diane's husband! This is the man who used to invent and own his own business! Seeing him regress back to having a mind of a child, in so many ways, is tough! Jon and his siblings were taught to respect and obey and honor their dad, and although they still do love and respect and honor him, there are times when they have to take on the role of "parent". Stan and Diane can no longer be partners in marriage like they were for over fifty years, for Diane has had to take on more of a mothering role instead of that of being his wife. She can't discuss finances or ask for his advice or them make decisions together like they once did, because Stan is no longer mentally capable of doing that.
Sometimes we cry and it feels overwhelming; but we've also learned that sometimes you just have to laugh. Stan has said things and done things at times that really is humorous, although it wasn't intended to be that way. If you don't allow yourself to laugh, then the burden of the situation is going to be too heavy to bear and you'll not be able to get through it without being too overwhelmed.
A while back, there was a post being shared on Facebook about Alzheimer's and how to deal with those dealing with this disease. Some of the advice was valid, but there were a couple of things on the list that weren't necessarily feasible in all situations. One of those things was to never tell the person "no". That's not always realistic.
Several months ago, Stan came up with this elaborate plan on how he was going to run away from the nursing home. He didn't want Diane to find out about it. He shared part of it with a friend who was visiting him, who later called and told Diane. She told us about it and wasn't sure what to do. We went for a visit a couple of days later and Stan shared his entire plan with Jon and me.
Every Friday, there is an employee at the nursing home that takes a group of men out for breakfast at a local restaurant. Stan has been one of the men who has been able to go each week, and he looks forward to it. His plan was this: On a Friday when they went out to eat, he was going to sneak away from the group when they got to the restaurant. He would to have a nephew sitting in the parking lot waiting for him, with his car running; Stan would run over and jump into the car, then they'd hurry and take off. He would have the nephew take him to his (Stan's) sister's house, which is probably about 45 minutes away, where there was plenty of room on the property for him to be able to hide out and live.
We weren't supposed to tell him no?! We told him that he may need to rethink his plan, because a lot of people could get into really bad trouble. The man who takes them to breakfast would get into trouble for not getting Stan safely back to Homestead and could possibly lose his job. They would call the police because no one would know where he was. If they found him in the car with his nephew, then the nephew could be arrested on kidnapping charges and go to jail. His grandson, who is a police officer, would be horribly worried if he was on duty and the call came in saying that his granddad was missing. Diane would be worried, not knowing where he was. Stan said hmm.. he hadn't thought of that. That was the last that we heard of him running away. He has never brought this up anymore.
Last fall, Stan was having prostate issues, which resulted in him having another minor surgery; but this time he had to stay overnight in the hospital. Jon and I stayed with him that night so that Diane could go home and get some rest. He slept very little, which meant that we had an exhausting night. He really didn't seem as confused as we thought he would have been, after being under anesthesia. Early in the morning, he started talking and was on a roll!! He told us that he was contemplating suicide and had no reason to live and had been thinking about this.... and on and on. After being awake for almost 24 hours by that time, I was exhausted and not in the mood to try and pacify him or give him sympathy. You need to understand that even though we are sympathetic to Stan having Alzheimer's and it dramatically changing his life, there are times when we reach a breaking point in dealing with various issues that come up. We're still human, with human emotions, and sometimes he can make us angry, irritated, frustrated, and we reach the end of our patience with him. That's just the honest truth! We love him, we try to be patient and understanding, but there are moments when he pushes our buttons and we lose it. I admit that I let loose and let him have it that morning. His words and attitude made me angry! I told him that he was being selfish, wasn't taking into consideration how his actions would affect his family, etc. Diane would be absolutely devastated! Jon and I had been there all day and all night, had been to see him regularly and done everything that we could for him..... If this was how little he thought of us, then Jon and I would leave and not ever come back to visit him anymore! Even though his circumstances had changed, that God could still use him; and had been using him in the nursing home to encourage and help other residents, especially new people who moved in (which is very true!). I was upset.... Jon was upset!! I lost control of my emotions and went into the bathroom to cry and get myself back together. While I was out of the room, Jon told his dad that he didn't appreciate him upsetting his wife (me) like that, and didn't want him to ever do that again; and he thought that I deserved an apology. Stan became very docile, and we felt like he was just saying this to try and make us feel sorry for him and get attention, like a child might, not truly meaning to carry out his threats. When I came back into the room, he was very apologetic, told me that he was sorry that he had upset me, and that he would never do that again. I told him that I accepted his apology, but I meant everything that I had said and I better never hear him making those threats again. That was the last we've heard of it and he has never, ever mentioned it again.
We do realize that his life has been stolen from him and he misses his old life. He wants to live at home; he wants to be able to work in his workshop; he wants to have a cell phone; he wants to be able to drive; he wants a computer; he wants money to buy things; he wants to be able to get out and do things. Mostly, he wants to be useful. We do know that this disease has ripped so much away from him, and it really doesn't seem fair.
Some of the other things that we've had to deal with is Stan not wanting to bathe; then a few months later him getting up 2-3 times during the night to shower. At the nursing home, for a while he would tell us how good the food was; then he went through a stage of constantly complaining about the food. Through conversation, we figured out that he wanted us to bring him in food; but we knew if we ever started doing that, then he would stop eating his meals there. Surprisingly, he has had no problem with the nurses helping him dress. In fact, after he had been there a short time, he told me and Jon that he "paid" that "young girl" (a nurse) to help him dress each morning, and how helpful that was. He tends to wear the same clothes every day. I think he's had on the same long-sleeved red shirt every time that Jon and I have been to visit for the past few months. A while back, he told us that he was hot and thought that the shirt was too warm. I suggested that he change into a short-sleeved shirt. He told me that I'd need to help him, because he needed a woman to help him dress! I was just thankful that his shirt was all that he wanted changed!!
Honestly, he can be kind of sneaky at times and you have to question him to try and discern if he's being honest or being deceptive. That is totally unlike the "old" Stan! You can't tell him something to try and pacify him, thinking that he won't remember; because that will be the one thing that will stick in his mind and he'll bring up the next time you go visit.
One of the most heartbreaking points for Jon happened several months ago. The residents of the Alzheimer's unit were in the common area doing different activities. Someone had given Stan a set of wrenches to mess with. They had taken everything out of the case and he was trying to figure out how to put everything back, according to size -- which was how the case was designed. He couldn't do it! Jon said that was something that his dad used to could have easily done with absolutely no problems, and seeing him struggle and not be able to figure it out was difficult for Jon to see. Stan asked Jon to help him, and was so proud when Jon was able to do it all by himself!
I think one of the keys is to try to think of something that they can do to fill their hours. Stan has taken an interest in writing, so has been writing letters to his daughter, Gayla. He sometimes enjoys visiting with other residents; sometimes not. When the weather is nice out, he enjoys setting outside in and enclosed courtyard. At one time, he was enjoying drawing maps of the neighborhood where he lived as a child. His interest changes, so we have to try and figure out what he will enjoy doing.
I know that this has been quite lengthy this week. There are so many stories and incidences I could write about that has occurred this past year. I wanted to give you an inside look of what life is like, not only for someone suffering from Alzheimer's, but also for their family. It is a horrible disease, and is often a long, difficult journey. As the person loses their different abilities, you feel like you are losing a part of who they are a little at a time. Unless you've gone through this, it's difficult to understand, but you do grieve as you pass different milestones of losing that person. When they can no longer remember how to do the work that they've done for years, you grieve. When they can't remember how to use various machinery that they've used for fifty-plus years, you grieve. When they can no longer drive, you grieve. When they can no longer function on their own at home, you grieve. When they lose their ability to use the right words or put a sentence together coherently, you grieve. When they have to start wearing Depends and have to be helped to dress and bathe, you grieve. When they argue that they don't have Alzheimer's and beg you to take them home and you know that you can't, you grieve. And if/when the day comes that Stan can't remember our names or who we are, we'll grieve.
When Stan says things like he needs to practice dancing so that he can dance at Gayla's wedding (who has been married for many years!), you grieve. When he begs Ken to let him come sleep in his shop and work for him, you grieve. When almost every time we go visit, he is surprised at how tall Jon has gotten and comments on it: "When did you get to be so big (one time he added, "you big boot!".... we think he meant "you big galoot!")?!", we grieve. When he becomes angry at Diane and confrontational because she won't take him out of that place, we grieve. Why? Because we are losing who Stan is! We are losing his mind, even though his body may live on for a while longer.
There are still many times when we get really good visits with Stan, which we are very thankful for. Overall, he is very sweet and enjoyable to visit with. We visit over and over again about ski trips the family took when the kids were young, because talking about that seems to make Stan happy. We listen to him tell about various machines he designed over the years, although he gets his stories mixed up, because that makes him happy. When he can't think of the right word, we'll prompt him, which seems to help and make things easier for him. It's been, and will continue to be, a learning experience.
I hope that none of you ever have to deal with this dreadful disease. If so, then lean heavily on God! If not, then pray for and encourage those whom you may know that is going through this with a family member. What a day that will be when we all get to heaven and no longer have to deal with diseases and sicknesses!
Dad has been out of the nursing home. One of his grandsons took him to the park he kept asking to go to. He wasn't there more than a few minutes before he was tired, and wanted to go back. He remembered going there for a while. But more recently, we took him out for some ice cream, and he thought it was the first time he had been out. We had to remind him about going out Friday mornings for breakfast, but he never remembered going to the park.
The occasion where Dad wanted to run up and down the stairs, he got right in my face, and yelled, "I'm still your father! Let me by!" My instinct was to get out of the way. Technically, he was right: he is still my father. At that point, he was acting childish, but we still thought of him as an adult who was a bit confused. Now, especially when we look at his writing and spelling, we see him as on par with an 8-year-old. Instead of letting him go, I answered, "No, I'm not going to let you get hurt, and I'm sure if you get on the stairs you will get hurt."
He seems to have very selective memories. He does remember a lot. But he started getting mad if we told him he needed nursing care because of the times he fell and hurt himself. He didn't believe that ever happened. But if he said he wanted to go to the park someday, he would remember we answered, "that sounds nice." He almost always recognizes that I'm familiar. And I'm sure he knows I'm his son most of the time. But he always had a hard time with names, so learned from childhood how to be pleasant with someone, and fake knowing them. There have been times I was sure Dad thought I was someone else, but I can't be certain. He mixes up vacations sometimes, but he has most of the facts right.
No matter how much his memory gets jumbled, he is always very confident his version is right. For example, when he couldn't get the wrenches sorted back into the box, he was sure he never knew how to do that. Even though he had actually taught me, he was astonished that I could do it because he didn't know he ever knew. Once after my sister visited him, he said she hadn't been there, but he showed us a scarf and hat she gave him. He remembered she gave them to him in person, but also didn't remember she had been there. It made perfect sense to him, and he seemed puzzled why we thought that was odd.
One popular test for Alzheimer's is to have the patient draw a clock. When Dad was especially argumentative one day, insisting he was fine, I asked him to draw a clock to prove himself. He drew a perfect circle. I was a little nervous that he might pass the test. He put a mark where '12' belonged. Then he started trying to distract me. Finally, he gave up, and said, "Well, no one really knows how many numbers go on it. That isn't something I was ever able to do, so it doesn't prove anything."
We have to remind ourselves that in his mind, he is a helpless victim of misunderstandings or some plot against him. It's true that he is a victim, but of circumstances, not someone's choice.
All there is left to do for him is to decide from moment to moment, whether he will be negative and angry, or choose to help and encourage others. That's a choice we all have, no matter what our situation may be.
1 can crushed pineapple with juice
1-1/2 sticks butter
1 can cherry pie filling
1/2 cup chopped pecans (optional)
1 package yellow cake mix
Grease a 9x12 cake pan. Pour in pineapple; spread evenly. Spread on cherry pie filling. Sprinkle dry cake mix over the filling. Dot with butter and add pecans. Bake at 350 for 1 hour. Serve with ice cream or Cool Whip, if desired.
Kids are funny! I think God uses children to entertain adults, so that we will laugh more.
Recently, a great-niece showed my sister a little lizard she had caught. She asked, "Did you know that lizards used to be dragons." My sister responded, "Really?!" My great-niece said, "I'm not even kidding!! They really did!"
My niece and her family took a road trip on Saturday and their kids were told that they could not take any toys with them in the van. One of their daughters didn't take a toy, so she technically obeyed; but she did take an empty box and held it the entire way there!
We honor God when we honor each other:
With our thoughts; with our words; with our actions. - Lysa TerKeurst
We love you!
Loretta & Jon