The word “Remember” can invoke many thoughts to each of us. You may even wonder where to begin. I’m sure that each of us could write a book on our own memories. I’m only thinking of the first thing that this precious word makes me want to write.
I remember the reason I fell in love with my husband. We lived in Colorado at the time and I remember the first conversation I heard him have with his mother. (His end of course.) The gentle tone in which he spoke to his mother reminded me how children are supposed to obey their parents. It made me remember that the reason we obey is because we love and respect them. He’d laugh each time she spoke of what “Muffin” (her dog and only companion) did that amused her that week. She talked about any visitors she had during the week. Bill listenened with interest and gentleness that I had not seen in a very long time.
He spoke with deep concern about how she was doing and what needed to be done to her house. It was older and was in need of much attention. Bill’s two brothers helped as much as they could. They talked for about an hour and sometimes longer. This impressed me as them having a close relationship. This might spark a flavor of “mama’s boy” to some, but he was no “mama’s boy.”
One brother lived in Germany at this time. He was in the army. He and his wife lived on the base for a while, and then moved off base. They flew home at least couple of times each year. At those times, they visited each of their parents and took care of the needs that were a little more expensive.
The other brother lived about an hour and a half away from her and visited as much as he could. He also did what he could to visit and if she needed shopping done, he would do it for her. He visited her on a regular basis. He was a policeman in that town he lived. From Fairbury to Grand Island was the shortest distance of the three brothers to their mother’s.
We lived in Denver, about a six hour drive, but Bill made that drive when he could, and did physical work on the house and the yard. When I began to go with him I would make meals for her. I’d put them in containers, and then in the freezer so she could just take out one for her, and heat it in the microwave. I also did housework for her that she was unable to do for herself. Their mom had arthritis, and was pretty well crippled with the disease.
For a year I listened to him call her every week without fail. He spoke to her in that same mild and caring tone each and every week. How could you not fall in love with a man such as this? He treated me with the same caring tone and respectful manner. The sincerity in his voice and mannerisms spoke volumes as to what kind of man Bill was.
As the year went along, I heard conversations with his two boys in California also. This was the same manner as he spoke with his mom. Those conversations didn’t last quite as long, but the attitude, love, and respect was shown to them as well.
What can I say? After a year, he asked me to marry him. We got married and here it is 28 years later. He still takes care of me in the way only a husband can take care of a wife; loving, caring, and sometimes even crying together. I still care for him as only a wife can; listening, laughing together, sharing a sunset, or even a simple meal are still pleasurable to us. We tolerate his dementia, and we tolerate my physical and emotional problems. We try to keep them in their place and go on enjoying the love and respect we have always had for each other.
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.
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 …
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.
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.
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.
Dance? Why, Thank You Sir
When I saw a flyer sitting on the counter at the nursing station one day while I was waiting for Bill to get ready, I just knew this would be something Bill and I would be interested in going to. There was going to be a shindig at the nursing home. Everyone and their families were invited. There would be a Country Western Band from 2-4pm. A petting zoo would be set up between 4-6pm which consisted of a skunk, kangaroo, porcupine, camel, capybara, and some other more common animals to our part of the world.
Of course, there would also be hot dogs, soda, cotton candy, and a few other choices of usual carnival food items. We went to this as it was set up in the driveway of the nursing home. I didn’t get there until 3pm since my home care worker came that day and wasn’t done until 2:30.
When I got there, the band was playing in the main dining room and Bill was just being escorted back to his wing so I told the aide that we would like to go over and listen to the band. We walked back over to the main building and could hear the music coming from the dining area. I told Bill that I’d like to go and listen to them and we began to go down the hallway. The closer we got to the dining room, the louder the music. I suggested that we go listen to it in the visiting room in the front. Bill agreed and we started to walk back the way we came.
We hadn’t gotten very far; Bill stopped, took my cane, set it aside and said, “Let’s dance!” Just imagine my surprise at that since in our 29 years of marriage we had never danced. Not even at weddings would he dance! Now that I can’t keep my balance very well, hence the cane, he wanted to dance. “Okay, I replied let’s dance!”
There we were, just dancing our hearts out and both of us smiling from ear to ear oblivious as to what was going on around us. Occasionally I did notice the ones that could see down the hallway from the dining room were just watching us instead of the band and smiling too. Some of the family members made remarks such as, “Oh look, they’re dancing, isn’t that just adorable?” and, “Isn’t that precious?” Several stopped and watched for a few moments smiling then walked on. I thought to myself, “Yep, we’re old,” and once again turned my attention to dance with my husband. Bill grinned from ear to ear, and was oblivious as to anything going on around us. I just wanted to be in the moment with my husband while he was happy as he was before this monster overtook him.
I know it used to make me smile too when I’d see older people dancing or walking hand in hand down the sidewalk. It is smiling and worthy of an “Oh, isn’t that just precious?” The literal translation of those types of statements is, “Isn’t that nice an older couple is still close and intimate? They want to and can do things that they did when they were younger. We fit the bill, 29 years of marriage, and even through the dementia we giggle over a private moment while taking a walk. In marriage there is an intimacy that only those two people have. A look, a twinkle in the eyes, and a reach for the hand. Those days are much fewer now as the dementia has slipped into Alzheimer’s.
The next time you see an older couple dancing together as if they were one, ice skating as only a couple that has been married for years can do, walking hand in hand and talking, perhaps even giggling at a memory only they share, think to yourself, “Isn’t that precious, and isn’t that adorable?” Happy marriages filled with laughter, trust, love of a lifetime, intimacy, and gracefulness in old age.
Not every time I see him, will he smile and that new sparkle will be there. I am not fooled by this kind of behavior for I know the time will come when his eyes will be blank once again, his smile will fade away, and he finally will no longer remember me. This happens, day by unannounced day. For now, I will take these fine days while his eyes have a mischievous spark once in a while and his smile is sincere. I will take today and cherish it even after it all stops.
He is not smiling as much and is confused as to where he is moving. He is wandering and that is not good. He is now in a dangerous position. I know that when we go to the doctor he is going to put him into a nursing home.
My dear Stepson,
From the first day you came to live with us when you were eight years old, and the cutest little boy I had ever seen. You looked like your father, walked like him, talked like him. You followed after him all the time. Your brother had come to live with us at the same time. I’ll have to admit, we had some issues settling in and thinking of us as a family. I’m not sure that either you or your brother ever did.
I know you remember the house we lived in when your dad and I were married. Remembering one instance still brings tears to my eyes, and that is when your brother got up on the roof to help your father repair some shingles. I was standing there when you asked if you could help too. Your father said “No you can’t, just your brother can.” I saw the tears welling up in your eyes as you looked at me with disappointment on your face. Do you remember what I said? I do.
I said, “That’s okay, I need you to help me shop, you are so good at finding coupons for me. I just can’t shop without you. You’re my little shopping buddy.” So off we went. You were, content while we were shopping. You helped me a lot. You and I cooked together, you helped me with dishes, and sometimes you helped with cleaning. You helped me almost all the time.
That was just one instance and it may not even mean much to you. You do not have to be someone’s mother to see your stepson is hurting and try to sooth that big scrape. You do not have to be someone’s mother to feel your step child’s pain, see hurt in their eyes, and be there when he needs you.
I was the one who was there when you were in trouble, and it was me that talked to your teacher when he cursed. You don’t have to be a mother to watch your plays, and go on field trips with your class. Do you remember who cooked for the family, changed the sheets, cleaned the house, tucked you in and kissed you good night? Son, did you hate me back then?
I’ve stuck with your dad through each stage of dementia. With each skill he lost I’ve been here to cry for him. When a thought was lost because he couldn’t get the words out. I cried for him. Every time he would get mad at himself who was there to calm him? I’ve been here all along. You haven’t seen him slip at all. You just come here and think he is fine because he is having a good day. You have not been here for anything he has been through.
Do you realize that if I had not called, you would not even know you father has dementia? I say that because you never call him. I’ve called you. Why? Because I think you should know about your dad even if you don’t think of him often. Yes, you visited us three or four times, but you wouldn’t spend time alone with your father. It was you who was telling me to get him involved to keep his mind active. I didn’t see you trying to do a thing for him.
When I told you he was coming in and out of Alzheimer’s now. You immediately wanted to move us to Phoenix. You must have thought that he was able to be moved without falling further into Alzheimer’s. Your father is 72 he needs to be in a nursing home, but I am still caring for him. I take care of his every need. I dress him, I bathe him, I comb his hair, I shave him, I brush his teeth; and I help him eat when he can’t. He doesn’t like it when he can’t see me, in fact, he panics. This goes on 24 hours a day, 7 days a week, 12 months a year.
Then just the other day I had to call you again because you don’t call your father. You would not even know that your dad was slipping in and out of Alzheimer’s. When I explained that your father and I talked about moving to Phoenix and neither one of us thought this was a good idea. He was worried about starting over again too.
When I told you about us not wanting to move down there, I knew you thought that I talked him out of it. You don’t really know your dad at all. I could hear it in your voice. I’ve heard that tone before. However, that Sunday your father could hardly talk. His head was on the arm of the chair, and random words ran together with no formed thought. Suddenly he snapped out of it when he was saying bye to his granddaughter. He joked with her, changed in an instant. I rejoice when he snaps out of it. That means I’ll have him with me one more day.
Saying good-bye to your father only and not just once, but several times. You made your feelings very clear when you did that. You’re not very subtle, you are very plain to read. You believe that I have not taken care of your dad very well. Let’s look at that. From the time he was in the nursing home to the day I texted you that he was slipping in and out of Alzheimer’s, how often did you even call to see how he was? I can recall the exact number of times. It is 0. Now when he is slipping away from me so fast that I will soon lose him, you think you can just move us down there and take care of him yourself. No, neither one of us wants to start over. Your dad and I have been married 29 years come the 23rd of July, and I want to have your father with me as long as I can.
I am your step mother and once you love a child you don’t just stop because he is a step child. I have no idea when you started to hate me, perhaps it was the day you screamed at me about the nursing home. Oh, it doesn’t matter. My feelings are; I was thrust into that position and I became a mother to you. Never will I ever claim to be your mother and I never did. I did mother you for 8 years. Think about these things, because lately you have burdened me with your hatred on top of the burden of caring for your father. It is what it is. I just have no more to say. I’m worn out.
Your loving stepmother
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.