Category Archives: Dementia

In closing this series

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 everyone expects 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 two days after the memorial, those were his last wishes. Therefore since I don’t have a car anymore, and I was in an extreme state of emotional turmoil these were the reasons that kept me from making another simple decision. Whether I could drive myself up there and/or stand this emotionally, I needed someone to tell me what to do. I could not make another decision on my own. My wonderful step son added his opinion and tried to help me make a decision.

I finally did make the decision not to go. I knew Continue reading In closing this series

Bill and I

 

 

Below is the last picture I took of Bill before he got really sick. In this picture, he looked contented and peaceful. He was just glad that I was there so he could hold me again. From here his final nose dive. From this time on, he was not my husband. I didn’t know the man this mental illness turned him into.

He weighed about 140 lbs so far and used to weigh 188. He turned into a very different man, pushing everyone away and hitting some people including me. These are the days I went home and cried. Continue reading Bill and I

Bill Tells All He Can

 

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 views 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.

 

October 2017

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 anymore.

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.

Continue reading Bill Tells All He Can

Feelings

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.

Continue reading Feelings

Remember

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. Continue reading Remember

Not much difference

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. Continue reading Not much difference

Mom’s Alzheimer’s

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 …

Dance, Dance, Dance

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. Continue reading Dance, Dance, Dance

End of phase

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.

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Retirement ends

End of retirement phase

 

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.

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