Not that I fear death nor do I forget that this is a sensitive subject. This is particularly something that is on my mind since my husband passed away on December 7, 2017. There is only so much that one person can do by themselves and every one expect them to hold it together. My stepson and a brother-in-law have been helping me with the details.
Well, we are burying him in his hometown of Fairbury, NE 2 days after the memorial, those were his last wishes. Therefore since I don’t have a car anymore, Continue reading In closing this series
Bill talks as well as can be expected
In September, 2017
I’ve asked Bill what his world is like, because it could help other people who have loved ones with dementia. It may also help others who already have it what they could expect for themselves, and their loved ones.
Now, some may not go through the same steps in the same order, some may have none of the view of their unfortunate condition, but this may help everyone with dementia. His first answer was that it is none of their business; let them find out for themselves.
Bill had been declining on a regular basis. The time had come that he wanted to tell what was going on in his own mind. By then, he could mostly talk so that it was understandable but his sentences were still broken. He was always soft spoken and kind. Never would he get angry and push people away, never would he get angry or annoyed with me.
Since he has always had trouble finding the right words to describe how he is feeling, I thought that if I helped him find some words it might help him, he would be able to express himself. Therefore, I asked him if the world looked normal to him
He said that it didn’t but he just didn’t know what he is supposed to do anymore. Bill also replied that he didn’t feel as if the world was normal, but I don’t know how to…. no words were able to get out after those words. I then asked him if the world seemed upside down to him. He thought for a few minutes, looked at the floor, then at me and with tears in his eyes, his answer was yes, it kind of did seem upside down. Once again, I asked him with tears in my eyes if the world made any sense to him at all. It took him a few minutes to answer that question too. … His answer was that nothing made any sense to him any more.
Those were his answers. These remarks were made sporadically…. I don’t know what I am supposed to do. I asked if he wanted to go for a walk. He would always want to know where we going to walk to. I told him that it was just to the office and back. He would be okay. Today I asked Bill what his world feels like to him. At first, he said that it was none of their business. Then I asked him if his world seemed to be upside down and if it makes him feel lost. He finally answered that it was upside down and he didn’t know what he is supposed to do. I told him that I only could guess how that felt, but I thought that he was brave being in that kind of world and functioning anyway.
I know that I have not written in a while as Bill has slowly declined to the point that he is at now.
It started when he fell and hurt his back and ribs on the left side. He would scream every time someone would try to help him up or move him. I had to call the paramedics just to get him off the cold bathroom floor to bed. He didn’t want to go to the hospital so I told the paramedics that he didn’t want to go. After I tried to take care of him and get him up, he would scream that his back hurt. When I sat him back down on the bed I told him that he was hurt and needed to go to the hospital.
When the staff took a CT scan of his head, neck, ribs and back, they could find any medical reason to keep him there at the hospital. The social worker for the hospital said that he needed to go to a nursing home and the only bed that was available was 35 miles away and I said no as to putting him that far away. The staff in the ER asked me what I was going to do with him. I told them I would take him back home with me. They asked how I was going to take care of him. I answered the only thing I could. I would take care of him the best I could, just the way I have been doing.
For the next few days, I had to call the paramedics every day to help get him up off the floor because he would scream every time I tried to help him. He then got weaker and at first, I could help him get to the bathroom because he was able to help me. As the days passed by, he was getting quite weak, and I was unable to help him any longer. The paramedics took him once again to the hospital.
It so happened that the social worker for this particular chain of hospitals was there in the hospital. She looked at both of us and informed me that I was not taking him home anymore. He would be placed in one of the nursing homes in town so at least I am able to get there to see him. I asked her where we could talk quietly. We were escorted to a quiet room with some comfortable furniture and we all sat down. The social director talked to me and told me I was unable to care for him myself anymore, I needed help. To make sure that I understood, she asked me to look at myself. I couldn’t even stand up straight anymore, I’m falling down more, and I am in pain from my own illnesses.
At this time, she pointed out that I was getting so that I can’t take care of myself let alone Bill. I finally agreed that he should go to a nursing home. I didn’t wait for him to get settled, but I left soon after I signed the papers. I couldn’t take any more of this right now.
This is not my husband that I go to visit. My husband has disappeared into the grips of that ugly monster that has been trying to swallow him whole. In just four days, he went from my sweet, soft spoken, gentle loving man to a man who is a stranger to me. He’s been there a month, and there have been glimpses of recognition of me. One day he remembered me for a couple of hours. It was wonderful; he opened his arms to acknowledge me. His eyes had that boyish twinkle, then he kissed me so tenderly. He was talking to me, and his speech was clear so we lay in his bed talking and I read him some of the bible. Lunch then came and I tried to feed him. He ate some bites of a couple of food items I know he likes, but he didn’t even want to eat more than one or two bites.
Bill becomes aggressive and has hit aides that were trying to get him to do things he does not want to do. He’s hit me too, but I remind myself that he can’t help it. This is the monster within.
When mom started doing strange things, we sort of laughed at her, as she herself did along with us. She was living with my brother in his house at this time. However, things didn’t stay funny, they got worse, and things had to change. It was up to my sister and me to do something.
Let’s go back to when we started noticing things that we all thought were funny. We would find her keys in the refrigerator, an item that she misplaced we found in the back of a closet. That day she may have driven 3 or 4 blocks out of her way and didn’t know why. She forgot to pay bills so Lynn and I started doing her shopping
Then things got worse. She was going to a friend’s house that was close to mine. The nursery at the corner called me and said that my mother drove in a ditch in front of the nursery. Being concerned, I told them I would be right over to get her. They told me the forklift got her out and she seemed dazed. I asked to speak to her and they told me that she’s not there, she was gone. NO…NO…NO I thought to myself why did you let her leave I wanted to say but didn’t. Instead, I got in my car and went looking for her myself. When I couldn’t see her on any road, I went home and started calling her on the phone. It took her three hours to get home. We only lived 30 minutes to her house.
The second incident put her in far more danger than the first one. She went to NH to visit her sister and spread dad’s ashes at his former college. I got a call at midnight from my aunt Margie in NH. She further told me that when she had called and didn’t know where for sure Margie told her to ask someone and then mom said that she was in some town on the shoreline which was 200 miles out of the way. Mom said that she was going to stay at the B&B she was at and would drive to her house in the morning. Mom got there the next day after noon. She had been a long way from Alstead.
Definitely, we knew that something was wrong and it was time to find out what. Lynn found an expert in geriatrics who was teaching classes in Alzheimer’s and Dementia at the University of Colorado which is where mom went for all her doctors. He asked if we could hang around for part of his lecture so he could show an example of an Alzheimer’s patient. My sister and I agreed. When he introduced her, he mentioned a couple of symptoms. Did he have to point out that she looked a little lost and scared?
Then my brother had us all over for a picnic. He asked my mom to go get the broom for him. She got to the top of the stairs and began to get that lost look on her face. Meanwhile, I went upstairs to get something for my brother and my mother was standing in the middle of the small hallway at the entrance muttering that she was afraid to ask Ronny what she was supposed to get. I yelled down at him to find out what mom was supposed to get. Ronny said impatiently that he already told her 3 times a broom and I pointed to where it was. In the meantime, I had gone and got what Ronny wanted. So here, our mother was handing Ronny a bag for trash. Ronny told me that she was deliberately trying to make him crazy. I tried to tell him it was the Alzheimer’s and she couldn’t help her forgetfulness and wasn’t trying to make him crazy. He said that Lynn and I had to move her out of his house and that he couldn’t take anymore of her pretending. Again, I tried to explain that she can’t help that she forgets. It’s not a game or trying to make you nuts, but if you really want her out, we will move her.
Lynn and I started looking for a place for her to live and I (for lack of anyone wanting the job) got to be her POA. Lynn found one right away which was a new place. It was a one-bedroom senior’s only apartment building. The manager told us straight up that this was not assisted living and there’s not always someone there so she has to get things done and if she gets a lot worse, she will need assisted living arrangements. Therefore, the long road begins. In 1999, Bill and I decided to move to Missouri. Somewhere quiet and settle down there. You know, someplace with a couple of acres. We had bought a 4plex in Joplin and the first floor was empty. Until we sold our house in CO, we had nowhere to go, so we stayed on the first floor of our 4plex.
We had been out here for 6 months and Lynn called and said that she wanted mom to come out here. Lynn insisted that she didn’t want to take care of her anymore. Therefore, I went back to Denver got mom and brought her out here. The first place I looked was perfect for her. The staff was wonderful, the administrator involved with the patients, and the food just like mom cooked. The décor was classy.
Each and every day I went to see mom and spent four to five hours with her. We’d read, put puzzles together, and talked. I got to know mom as an adult instead of a mother. Getting to know her as an adult was a privilege that showed me why people loved her so much.
Then in 2008, I fell and broke my shoulder, had to put mom in the nursing home, and Bill had already been diagnosed with dementia and so begins the long journey …
Almost all the conversations we overhear are because people tend to think that their conversations are the most important words to be said over the phone line ever. Turning down the next lane, you find the same cart pusher on the phone still carrying the phone and the same conversation. The next aisle there’s the same cart, but this time, no talker, oh, wait a minute I hear that cart pusher coming.
The cart is the same conversation walking and shopping. Blocking the aisle, I say “Excuse me,)” the cart doesn’t move. The second time, I myself being tired of this cart pusher said again “EXCUSE ME!} This time when I said that, I was louder and bolder by bumping the cart.
They may be talking about the kids’ school projects. This conversation seems to be the only thing going on in their lives. To all those who stand in a checkout line, and there people you’ve still talking while the cashier is trying to collect their money and people are behind them. I say to you that their conversation is BORING, your talking is RUDE, and it is totally IRRELEVANT to anyone standing in earshot.
If you’ve gotten this far, don’t you think that this was the most irrelevant one-way conversation you’ve heard in a long time???
The first thing people might say when they hear the word “mighty” is the mighty Oak tree. It is beautiful, huge, and strong. This is probably the first thing people think of when they hear the word mighty.
Mighty can be a complicated word. For instance, if I said that superman was a mighty man who had great strength beyond that of any other person it would be a reality of TV, someone’s imagination. Isn’t that true for all the youngsters who watch the cartoons and shows that have been on? This is their view of the word “mighty.”
Others may think of Santa Clause as a mighty person that is real. He must be real because he delivers gifts all over the world in one night. I would agree that if any person could do that in just one night he would be a mighty person. He would be mighty even if forgot one house. He would be mighty because he knew all the children, what they wanted, and where they live. Children idolize him and make him into a hero.
Enormous could refer to a statue. Take the Lincoln Memorial, which is huge. No man could lift it by himself, yet people come from miles just to see the Lincoln Memorial and admire it. Perhaps it reminds them of all the things that President Lincoln accomplished during his time of the presidency. It could be that they came to reflect his entire life. From the poor farmer family and rose to the presidency. Those deeds he did in real life may make Abraham Lincoln a hero to some and others may have tried to follow his pattern, his personality, his step into politics. Intellectually he was a mighty man.
I actually shudder to think of the definitions I have read in one dictionary. I can picture the children running out the door screaming all the way home to be comforted by their mother.
When I hear the word mighty I always think of only one personage that I would ever consider huge, gigantic, unmovable, unstoppable, tremendous in power, but is so gentle and lovable that everyone man woman and child looks up to Him, worships Him, hopes in Him, and prays to Him. His title is God, but more than 20 million know him by His own personal name, “Jehovah.”
Ever played dodgeball? Well, we played it a lot at lunchtime break in elementary school. That was grades one through six for you youngsters. Now mind you, I was a shy child and always got picked last for any team but I did play and I was good at most sports. Still, my school years were not my best years.
It was me that was usually chosen first in dodgeball. Believe me; it was worse than being picked last on team sports. Chosen first in this game meant being the first one everybody threw the ball at. Oh come on, this meant low man on the totem pole and the boys threw hard enough, but the girls matched and sometimes beat the velocity of the ball.
Here I am in my hand me down dress that I hadn’t grown into yet, and bubble gum still stuck in my hair from the night before. I closed my eyes and just knew that this was going to hurt. The first throw made me lurch forward and I fell in the dirt. The second throw hit me before I got up and somehow landed under my dress. Of course, that made my dress fly up and show my panties which made everyone laugh. Therefore, with a heart full of indignity I took my rightful place in the circle.
I got to throw the ball first and I missed. Even though I was able to regain my dignity, I caught the ball again. When I did anything, I really put all my energy into it and play my best. I guess that can be expected growing up in a family of tomboys, and being raised in a neighborhood of all boys. I had to play tough. The trouble was that while I was a tomboy and could climb trees with the best of them, I still threw like a girl. My turn to throw again landed smack dab in the middle of a girl’s stomach. Noticing that she didn’t even move when I threw the ball, I knew that I was being set up.
Back in the circle again, I lurched to one side and then the other trying not to get hit. The next thing I knew, I was eating dirt again. Of course, that is when the bell rang and playtime was over. I stood up, brushed the dirt off me and once again tried to regain my composure. Once inside I breathed a sigh of relief. Another day of indignity put behind me. I shuddered to think of what tomorrow might bring.
Of course, I wasn’t raised in a good environment growing up. The five of us would have been removed by social services if raised in today’s society. I was picked on a lot by the boys in the neighborhood and always felt as if my heart lurched backward every time I would get a cruel comment. I’d head home each time but stopped crying as I neared house. Unfortunately, I would end up crying before bedtime got there, and even more when I went to bed.
Occasionally I remember those school days. I don’t look at them as being too terrible. I survived into adulthood. When I got into my 30’s, I got five years of therapy. Believe me, once I understood that when a person becomes an adult, they do so by letting go of the past and taking responsibility for the adult you want to be. If we don’t do that, then our childhood continues to rule our lives and we never mature.
There was a time I was shy and it was in the childhood years. The feelings within me were too much for me to bear alone, but alone I did bear them. I was only five or six years old. It’s truly strange that they were so severe that I wanted to go to sleep and not wake up. I wanted to die but I didn’t know how to do that. If I could just disappear, I would have been happy. I never could do that either.
Therefore, I grew up despite my inadequacies. Along the way, there were far too many bumps, I thought. When I grew up and look back at my child hood there were some good times, and there were a few times that I did shine in my own right. Remembering an assignment that we had to do on the spur of the moment, the teacher asked us all how we would act if we found a mouse in our slipper when we got out of bed. The teacher called on each of us in no particular order. She usually called on me last and this time was no different. Each student did nothing but yawned, stretched, put their slippers on, ran and screamed. I am so glad that I was last because I thought the way they were all doing the same thing was stupid.
When finally my turn came around I yawned too, but I also wiped the sleep from my eyes, stretched, and yawned again. I then picked up one slipper put it on and put my foot back on the floor. I then slipped my other foot into the other slipper made a puzzled face wiggled my foot, and then I picked up my slipper, looked in it shook it then screamed and threw it on the floor. My teacher applauded me and said that what I did would happen in a real situation. You had to look to see what it was first. She praised me in front of the class. I did shine inside and out.
This class was on public speaking and I loved it. Another time I shimmered was on an assignment of comedy. We were all to write on a funny way something was invented. I told my dad I was stuck and didn’t know what to write about. My dad said he had an idea. I could write on how the twist was invented. I asked what he meant he said maybe an ice cube had somehow fallen down into a ladies dress. I thought about that and since it was freezing cold while it was melting, she turned one way and then other just trying to get the ice cube out of her dress. It finally fell out but not before the kids started doing this new dance. They started calling it the twist and from now on, the twist has been a big hit.
The other kids in the class loved it and the teacher was howling. Of course, I acted like what she might be doing. All were laughing so much. I walked to my seat and had to pass the teacher. I remember her asking me if I had thought of that myself. I had to admit that my dad came up with the idea, but I wrote the story. She had an A in her book, but she marked it down to a B-. I still gleamed that day, so there was another shimmer in my life. I’m sure there were other times I sparkled too. I just can’t think of them right now.
Somehow as time went on, I grew from a shy child that could hardly speak above a whisper, to a woman who could voice her opinion in a loving way. It was time, circumstances, and effort that brought me out of my shell and blossom into a writer that is able, as are many others, to put down thoughts that are understood and heartfelt.
When I was in school, mind you I’m giving away my age, we had to wear dresses or skirts, and boys had to wear dress pants and dress shirts. There were no exceptions, nor were there any excuses. It was automatic that you put them on and it was expected with no variations to that rule. It was the school dress code and girls dresses and skirts could not be above the knee. It had to be just below the knee or longer or you were sent home no questions asked.
As a matter of fact, I was a senior in high school before the code changed. The schools became a little less strict on the matter. They dared to let girls wear pant suits and this was allowed for the girls. Boys dress didn’t change yet. Girls pant suits had to match top and bottom with a blouse if it didn’t cover the below the neckline. The style in that day was that the neckline was covered. I felt absolutely scandalous wearing pants to school. It was utterly unheard of.
The next style to appear on the scene were mini skirts. Oh my goodness! That was allowed in school but it could not be any shorter than 3 inches above the knee. Already thinking that was showing too much, never would anyone be catching me wearing one of those kinds of dresses. That’s what I thought. Bob, my boyfriend at the time want me to wear one, so he gave it to me for a gift, all wrapped up in pretty paper. I already thought that the school dress code had gone too far. In fact, when I was wearing a pantsuit I had felt as if I should have a dress on. Bob knew my opinion, but wanted me to wear one anyway.
Casual was the word for these mini skirts dresses and skirts. I wore one out on a date with Bob. He loved it and I hated it. I felt positively naked in it. I kept trying to pull it down over my knees, but every time I tried to pull it over my knees, he would push my hand away. I hated this dress and I hated Bob for making me wear it. Our heads clashed once the two piece bathing suit came out. I gave in and bought myself a two piece bathing suit, but I found my own style of two piece. I bought a two piece that covered the midriff and the bottom was the length of our gym shorts had been, and our behinds did not hang out.
Anything goes today and nothing is casual really, that is not according to the words above. So be careful ladies.