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 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 and I

 

 

Below is the last picture I took of Bill before he got real 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 every one away and hitting some people including me. These are the days I went home and cried.

I don’t feel as if I have mourned Bill yet. Maybe I mourned him until the day he died. The strange thing about this is something that Alzheimer’s disease does not do. Bill still recognized me and I could tell by the way he looked at me and listened intently to what I was saying to him. Long before the time Alzheimer’s patients are dying, they don’t know who anyone is.

Yes, I believe that Dementia is very different from Alzheimer’s and this is from my own personal experience. This is the photo where we cuddled for the last time

filter on relax
Before Bill got real sick,

 

 

 

 

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 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.

 

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 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.

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.

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.

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.

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.

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.

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.

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.

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.

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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