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.
This is another entry about the feelings my husband hides within his heart and memory. He is weighed down with dementia and at times, he believes he is carrying this burden by himself.
He’s not alone, for this is a two-person journey from beginning to end. What I’ve seen in Bill is the sadness of losing each skill, each thought, each piece of him to oblivion. I’m not morose, or a negative person, but this is a sad condition of the mind. Dementia is a condition of the mind that two people have to deal with. Each must adjust and help one another cope with the stages that must take place.
My mother had Alzheimer’s and I watched her go downhill for 16 years. I took care of her every need for those years. She did not have to be alone going through the process of memory loss alone either. When she was sick and dying, Bill was diagnosed with Dementia. Sometimes I forget what really is happening to the person within. When you are with a person with such a condition, perhaps every day, you don’t see the gradual change. Others do see the larger picture and see the downhill slide.
To those who take care of these ones, it seems as if all of a sudden that ugly monster has shown its’ face and this decline appears so suddenly that it takes your breath away. To me it feels as if it has been sudden that his thoughts and speech have trouble coming together, if at all. I remember the thoughts of his heart wanting to come out, but they were stuck. The thoughts were there, the memories are there, but the words are not.
He struggles to get the thoughts out and it hurts me to the point of my heart breaking in two. As he tries to form the words or remember his thought, the look of desire in his eyes I know that he has something important to say to me. The unwillingness of his mouth to form the words that have already gone into obscurity and as the thought itself entered the doors of extinction, we look at each other helplessly. I can only hug him, tell Bill that I love him, and it’s not his fault it’s the monster called dementia. Then nothingness fills the void of silence.
Sometime in Jan or Feb of this year, his son called us. I do not remember what the objection was, but JR was mad at me and he told me that he was very angry with me. He thinks that his dad should be down there with him where he could care for him properly and he could see his grandchildren. I started to cry, and I told him that he has a right to be angry and it was OK to be angry with me. His dad found his voice, grabbed the phone and let him know a few things that his son was not aware of. Bill reminded him that I was his wife and JR had no business getting me upset.
That was only one small thing that we have to work with. Bill has to remember that his son has not had to deal with older people and never with Alzheimer’s and Dementia. It is a shock for him to see his dad like this, and he doesn’t see it as bad as it really is at this time.
Thankfully, there is no one else on bill’s side of the family that we have to hold their hand and deal with this too. When you look at this, it comes down to the importance of the relationship that Bill and I have built over the years that is getting us through this. My sister said it all when she said that when you get old, all you have is your family to take care of you.
That’s the truth isn’t it? As for us, we’re just plugging along like every on taking it one day at a time, and as time passes you too will feel the pangs of tomorrow. Then it will be your turn to just plug along as the others do.
There was also a sparkle, but that’s another entry for another day.
This will be a shorter post because I have been tending to Bill. I let this go a long time because of that, but I will be catching up soon I hope.
Let’s see, I left him at the memory ward, which was not necessary for Bill to be there, but I needed a break from the frenzied life we had been living. With all the doors slamming shut, and only small windows opening, I needed the break. Therefore, when I left him there, I went to NE, then Denver. I visited with old friends, but by the time I got home ten days later, I needed to rest up.
After a while Bill was spending more time at home than he was at the nursing home. We decided that he might as well come back home. Before he moved back in, I went to FL to see a dear friend. The days are getting shorter for all of us and I wanted to see her one more time.
I wanted to move to another town, so we moved into a place that I thought was like assisted living where I would get some help with Bill. We had two rooms, and the services were supposed to be room cleaning and laundry. We never got any room cleaning done, I had to do that and there was no help with Bill. What was the point of being there where they take all of your money and only give you three meals a day. There was very little nutrition in them and consisted of little taste either.
We decided that we would be better off going back to the town we came from and get our own apartment again. At least we will be eating decent meals and have someone coming in two or three days a week to clean, cook, and run errands for us. While we were there I became blind as to the continual decline in Bill’s judgement.
Someone told me that he had gone outside and wandered into the woods. Not thinking too much about that as he was in the room with me again. When night fell, I almost had a heart attack when Bill got undressed. His legs were covered with chigger bites on both legs from his feet to his thighs. I asked him how he got them clear up there and he said that he wasn’t sure, and I spent the next three hours scraping the bites open and dabbing each one with alcohol. He did remark that he learned a lesson that day.
When I look back at the few months that we spent there, I was aware of him getting a little worse and when one of the resident’s boss came in, Bill didn’t like him, he stood up at the table, and was telling me to get out of the way. I was sitting between the two of them. When I asked him why he couldn’t go around the table he held up his fist and said that he wanted to punch him in the face. This was the first sign of any violence I had seen in all of our years together. Never would I have guessed that he would threaten anyone. This guy was twice the size of Bill.
There were a few other things that he did that were not acceptable, but he wasn’t aware that he was doing anything wrong. We did have two rooms, but we had to go out into the hallway to get to the other room. Then he got lost and opened the wrong doors a few times which I was not aware of until later on. I was glad to go back to apartment living. I was having to be with him all the time and with him in whichever room he was in.
Back now to our own apartment.
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.
There’s a program here that gives a prompt. That is to help writers get their thoughts running again. Now, you may use these single words for that purpose, just for practice, or you may do them for fun.
I wrote a daily prompt a while ago that was on the word apology. I began by saying that an apology that consists of a short statement such as “Oh, sorry ’bout that” is an unacceptable apology. When an offense is committed against a person it becomes a personal offense. A personal offense deserves a personal apology. Sometimes an offender doesn’t realize that they have offended or hurt someone.
After 20 years, my personal offense against my family has become a painful realization of just how deeply that one act hurt them. I never dreamed that my actions would hurt anyone but myself. Seeing that it does, apologies are long over due. After I wrote and posted my apologies online, thoughts of my own attempt ran through my mind again. Slow motion flashbacks kept me awake night after night. This was a very sensitive subject to me and to my family. Once believing that my children, my stepson(s), our granddaughter, and my parents would not suffer any pangs from that act, but now I knew that it did. I removed the post. Unfortunately, I hastily destroyed it and wish I hadn’t.
A comment on one of my posts was a cry for help so, I had to write this post. I have to do this for my family because it has taken me more than 20 years to realize the unimaginable agony I caused the ones closest to me. Unexpectedly, I found myself needing to apologize to a number of people. That one comment made me imagine what happens to each family member when someone commits suicide. Jess, there was a day you revealed to me you remember the day of musical chairs. Then you asked where that was. I had to tell you that it was at the hospital for people who needed help.
This act would have hurt you in a way different from all the others. If you had known that when it happened, you would have realized by the time you were in grade school that your grandma would have been there in your life to watch you grow up. Had I succeeded, you would have realized this was my fault that I wasn’t there.
Your years of growing up were some of the happiest years of grandma and grandpa’s lives. The visits, the overnights, the talks, and the vacations we took together, we always tried to do things that your parents didn’t do with you. I would have missed all those things.
When someone commits suicide they don’t really want to die, they want to stop the pain. I remember wanting to die way back when I was a child, but I didn’t know why or how to do it.
He never saw any of the promises the recruiters made. He was in Afghanistan but a couple of months and they sent him home. He was in Bethesda Hospital for a while and as soon as he got out, he waited for a train on the deck and threw himself onto the tracks in front of the train.
To everyone that felt the sting of my actions, I truly believed at that time, I was only hurting myself. I truly believed that it would affect no one but me. Anyone who thinks that way needs help right now. I knew I was in trouble and headed for more, but I didn’t know how to stop it. Owing everyone in the family an apology, I am going to try to do that now.
My husband and I had a long talk along with my apology to him. This was the most difficult person I have ever had to apology to. When I realized how deeply my husband loved me, how much he depended on me to care for the family and all that had to be carried out. If he had me no longer, and had to take care of all the affairs, and how much this would have devastated Bill. I could see it then. He would not have been able to bear this happening to him. He had already lost so much in his life; this would have deadened his emotions to the point of physical and emotional paralysis.
JR, although you are grown now, you were young at that time. If I am correct, I believe you were 13. Words will never be enough and there are not enough words to apologize to you. I know that this did hurt you in ways I don’t know how, still to this day. You saw what was happening to me and I sincerely apologize for the unhappiness and uncertainty I caused in your life at that time. It was more difficult for you than any of the kids. You were at the age that you needed a mother figure in your life, and I let you down. In the younger years of yours and Jason’s lives we did have many good memories, but I am aware of the bad ones too. There were too many and I feel badly about those days too. Sometimes I still cry about those days, and I cry even more over the selfish act of suicide. We’ve never talked about it, so I don’t know exactly how you felt, how much you knew, or what damage I did to you.
Jason is not here for me to apologize to. It’s too bad that he was hurting so badly that he needed to make the pain go away the only way he knew how. (His girls were loved so much by him and they loved him too. He might have been able to put the brakes on and she would not be so wild.) I know that this hurt him at that time in ways I don’t know either. My attempt affected him somehow but I won’t know until the resurrection. He was a difficult child to get to know what he was thinking. It may not seem like it, but at times I felt as if he were my own too. He tried to reach out for help, but I was not able to cope with him at that time. Many times you saw me help him when he needed it no matter what. I know that your father didn’t know what to do to help either of you. He’s a good man and loves both of you. I do look forward to seeing him again. We both did the best we could at that time.
Now I turn to my own 2 daughters. Tammie, I know you were and still are very upset with me and there isn’t anything I can do about that. You only stayed with us a couple of months. When your father changed the lock on the door without your knowledge and you didn’t want to come back to us, I just figured that you didn’t love me, so I let you go. I didn’t order the police to put you on a plane back to us.
I don’t know how my actions affected you, if it did at all. You are further away from me than words. All I can do is apologize. I truly am sorry for my act of selfishness.
Lauralee, You were around when this happened and I’m so sorry that it hurt you; some day I would like to sit down and talk about that. I hate now what I did years ago. Our relationship has always been rocky at best. I know we laughed about that before, but it isn’t really funny. I am sorry that I don’t recognize how this affected you since we are not very close. I would like to talk to you about it someday soon. My deep apologies for not being there. Thank you for the amount of time that you let Jess visit us and spend so much time with us while she was growing up. I feel bad that we didn’t have time to have lunch when I was in Denver. I’m sure Jess told you I got pretty sick in Laramie. I won’t be back to CO again. The altitude I can no longer tolerate. The doctor said that once you leave, you can’t go back if you have lung issues.
This is for my parents who were thankfully busy with their own lives. My dad was sick and my mother was trying to take care of him and work at the same time. Now they are both gone, so I cannot apologize to either.
Why would you want to do that?
I underestimated myself all the time until I took a good look at the word and then a good look at myself. Using the thesaurus, I found the first word listed was “under value”
I didn’t know myself at all. Here I was plugging along and just going through the motions of life. I never stopped to think that I had any value at all. Until I got off “my little pity pot” and took an honest look at myself.
- Yes, I had faults, so does every one
- I just had no energy and I didn’t care if I made a difference in anybody else’s life
- I’ve never felt I was worth anything at all. OK I told myself..
It’s time to get off the pity pot and get some positive juices going. The reasons above are now things of the past. First of all, I am a person who is a giving person, I love people and it makes me happy to give to others. I know that I make them happy because they always tell me how glad they are when I stopped in and visit them, or bring them something to eat when they’re sick.
Then there are all those years that I contributed to society by working, paying taxes Then there is the fact that I have talent in some things. I love photography, and I have a knack for writing. It doesn’t matter, stories, diaries, resumes, etc. I found that when I looked at life through the eyes of an objective person, I have a lot of worth.
So, let’s all get off of our “little pity pots” and take a good look at ourselves. I will never underestimate myself again and I bet you won’t either.
End of retirement phase
Along with dementia comes a loss of many things in our lives. When one party is sick, and the other has dementia, the medial bills stack up fast on the credit cards. With medical and bills piled up, something has to give.
Therefore, another phase of our lives ends after retirement. We had to sell our beautiful four-bedroom home on five acres. One reason was the medical bills that stacked up leading us to bankruptcy which put an end to our good credit we had at the time. Alzheimer’s had resided with my mother for 15 years by now. Dementia had been diagnosed in my husband Bill’s life. No more trips, no more dropping everything and going somewhere. Yes, the carefree phase of our lives had slammed the door quickly.
We had entered a new phase. It was one of high medical debt, and maxed out credit cards. There was no end in sight to this new phase either, especially after I fell and broke my shoulder. Necessity left me with five surgeries in the first year alone. My mother had to be moved to a nursing center and I still needed to be with my mom often. My mom needed me in these last of her days, even if she didn’t recognize me. I had to be sure that she still was taken care of properly. I had to take her laundry home and wash it because her clothes disappeared when they went to the laundry there. Dementia in the first stage was waiting at home for me.
It does sound like I’m whining, but I’m not. My mom died a few years ago. My husband’s dementia is in the second stages, but I don’t mind. Our bills are under control and we now live in a one-bedroom apartment. I wouldn’t say that life is good, but for me it is. I still have my husband home with me. I rejoice each day that we are able to communicate and be understood by each other. That is a joy in my life.
In the early years of our marriage, he had to care for me. He did it so lovingly and never complained. He was there for each medical emergency, and each surgery. Now it is my privilege to care for him. I hope that I can do that with the same love and gentleness that he has done for me all these years. So now begins the final phase of our lives and I will still thank our heavenly father for the Kingdom we pray for, the Kingdom that will rule over the entire earth, (Rev 21:4) and tells of no more death or tears.