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Dementia Doesn't Mean Demented

A True Story of Living with a Husband with Dementia

Photos of Our 30 Years Together

"So you think I’m crazy?"

It was shortly after my husband was diagnosed with vascular dementia that he had another minor stroke. He had just turned 71 but you wouldn't guess that by his smooth complexion that hardly had a wrinkle. One thing I loved about him was his sense of humor so when he said to me, “So you think I’m crazy now!” I thought he was kidding except for the tone of his voice.

In the 28 years I had known him, I often kidded him about being crazy and he agreed I was right in a joking way. One of his favorite things to tell people who asked where he was going was to say, “Crazy!” But since his stroke, his humor was diminished so I should have known he wasn't kidding when asking me if I thought he was crazy. This time he actually sounded hurt. I had giggled and flashed him a look like he was a bit off after helping him into his wheelchair and pushing him to the living room where he had asked, “What happened to the closet out here?”

There had never been a closet in the living room of our little apartment on South Street in Long Beach, California, so it was a natural reflex for me to laugh thinking he was playing a joke as he so often did. I was taken back by his hurtful expression so I assured him he was not crazy and that his mind was just playing tricks on him, as anyone growing older can testify happens frequently.

I realized later that he was most likely thinking of the home we had in Gardena about 15 years earlier that actually did have a closet in the living room. I felt bad and made a promise to myself that this would never happen again. I would have to find a way to let him know the reality of things without making him feel like he was stupid or going crazy.

After all, he may have been a bit on the crazy side but not what-so-ever stupid. Anyone that knew as much about flying as he did was the opposite of stupid and very intelligent, which was the biggest thing that attracted me to him so many years ago. What was sad to me was that out of all his so called friends that hung around in his drinking days, none came around now except for maybe two that were actually true friends.

The Stigma of Dementia

There is a stigma to the word dementia, maybe because it sounds a lot like “demented,” and most people associate a demented person with someone who acts like a maniac due to mental illness. Unfortunately, the actual meaning of demented is “Suffering from dementia or a loss of cognitive function” or “Mentally ill; insane.” However, if you’ve ever been around someone with Alzheimer’s or other types of dementia, you would not think of them as crazy or insane. Rather they are like being sadly trapped in a slow body and mind that doesn’t work as it once did, lost in a world they’re unable to describe because they’ve forgotten the words to use.

Learning a New Language

The next few years would have as much impact on me as it did on him as we learned to live together under these new circumstances that dementia forces upon you. I began to feel a bit demented just trying to make it through learning the new language that caregivers need to know in order to communicate with a loved one who has Alzheimer’s or other dementia diseases. I call it the ‘love language’ because you need a lot of love in order to understand some things said by your loved one when his mind is decaying and he is unable to find the right words.

Moving Too Fast

My dear husband brought an interesting and rather humorous point to light one day while I was trying to help him with his food. I was getting impatient with his slowness instead of letting him do it at his own pace, when he cantankerously said, “I know what your problem is now.” I was taken back because he had not spoken that many words so clearly in some time. So I said, “Oh really, what’s that?”

He softly said, “You move too fast.” I tried not to laugh to keep my promise to myself but I couldn’t help make a short snort of a laugh. I told him he was right even though I know I move a lot slower than I used to but yet it’s much faster than he’s able to move so it seems like I’m moving fast to him.

I can only imagine how frustrating it must be for him to see everyone whizzing around while feeling as if he was stuck in slow-mo. I think of myself as slow compared to younger and healthier people, but to him, I was moving way too fast and he needed me to slow down.

That night is when I accepted that this was to be a journey for both of us, not just him. My intuition was telling me I needed to change the way I was looking at the situation in order to survive the huge challenge of taking care of my precious loved one. I never dreamed that some good times would come out of this seemingly devastating situation.

Crazy Fun Guy

What’s really ironic about his being afflicted with this condition is that his friends used to kid him, calling him “Crazy” because of the way he was, but it was meant in a fun, wacky way because he just was not normal! It was in a way you can’t really understand unless you had the privilege to know him. Many thought of him as “crazy” because he had no qualms about speaking his mind, most times without regard to other people’s feelings. He always said exactly what he was on his mind without beating around the bush and didn’t care what anyone thought of him for it.

He had his own unique way of standing up for himself and I admired him for that. It was one of the things that made me fall in love with him and over the years I think a little of his strong personality rubbed off on me. So now that I’m his caregiver, I’m sure it will come in handy at the times when I need to stand up for him because he’s unable to do it for himself.

Acceptance

I started writing this article four weeks after he came home from his last stay at the nursing home following his third surgery in four months. The surgery was to save his life due to the threat of dying from gangrene that started in his right toe spreading to his foot and then his leg. In the effort to save his leg, the third surgery was the last resort to save his life by amputating the leg above the knee.

Even though it was upsetting to see him like that, I accepted him just as I’ve always accepted him just as he is. I’m sure this was one of the reasons our marriage has survived for almost 30 years. Actually, the physical disability was easier to handle and accept than his mental dysfunction.

A Control Issue

I realized later that Bob’s unwillingness to sign over his medical decisions to me was one way he could still have some control of what was happening to him and he just couldn’t accept giving that up. His well-known stubborn streak was still very much there—it was part of what I call the ‘Dumas Demeanor’ that he has passed on to all his children. I had learned to live with it but at the same time, learned from it how being assertively stubborn at times can work to your advantage when necessary. So ultimately, he helped me build up my self esteem.

During this time, I was in some sort of denial, just as most wives are at the beginning of the decline in the health of the strong leader of the husband they had married. I believed that if he was not ‘sound of mind’ he wouldn’t be so adamant about not allowing me to make his decisions. After hours of sitting with him in the hospital, exhausted from the ordeal of the past few months, I declined to fight the issue any further with him.

Blessing in Disguise

Things had a way of working out better after that and his dementia became somewhat of a blessing in disguise due to the fact that he became a quieter, more gentle man. The silver lining was that I was able to talk to him more than I had ever been able to before. He would actually listen, which was something he had a hard time doing before because of his attention deficit disorder. Now he would just sit back and smile as I talked about whatever was on my mind. So there were some advantages to his dementia but I missed the lively man that I married.

We spent the next couple of years enjoying each other until he passed away. As much as I thought I was prepared for his death, it was still a gigantic shock, and I grieved for about a year before things seemed to get easier. The things I miss the most about him is his humor and the way he put me on a pedestal. I was blessed to have known him.

By Jessica J. Dumas

If you like my story, I sure would love it if you tipped me. Thanks!
You can also read more about us in my book called One Last Flight Lesson available on Amazon.com. It is about how we met, how he saved me from my first abusive husband, how he taught me how to fly and taught me how to love myself again, and how our family grew as we spent 30+ years together, and how it ended sadly when he passed away. The eBook is only $2.99.



"So you think I’m crazy?"

It was shortly after my husband was diagnosed with vascular dementia that he had another minor stroke. He had just turned 71 but you wouldn't guess that by his smooth complexion that hardly had a wrinkle. One thing I loved about him was his sense of humor so when he said to me, “So you think I’m crazy now!” I thought he was kidding except for the tone of his voice.

In the 28 years I had known him, I often kidded him about being crazy and he agreed I was right in a joking way. One of his favorite things to tell people who asked where he was going was to say, “Crazy!” But since his stroke, his humor was diminished so I should have known he wasn't kidding when asking me if I thought he was crazy. This time he actually sounded hurt. I had giggled and flashed him a look like he was a bit off after helping him into his wheelchair and pushing him to the living room where he had asked, “What happened to the closet out here?”

There had never been a closet in the living room of our little apartment on South Street in Long Beach, California, so it was a natural reflex for me to laugh thinking he was playing a joke as he so often did. I was taken back by his hurtful expression so I assured him he was not crazy and that his mind was just playing tricks on him, as anyone growing older can testify happens frequently.

I realized later that he was most likely thinking of the home we had in Gardena about 15 years earlier that actually did have a closet in the living room. I felt bad and made a promise to myself that this would never happen again. I would have to find a way to let him know the reality of things without making him feel like he was stupid or going crazy.

After all, he may have been a bit on the crazy side but not what-so-ever stupid. Anyone that knew as much about flying as he did was the opposite of stupid and very intelligent, which was the biggest thing that attracted me to him so many years ago. What was sad to me was that out of all his so called friends that hung around in his drinking days, none came around now except for maybe two that were actually true friends.

The Stigma of Dementia

There is a stigma to the word dementia, maybe because it sounds a lot like “demented,” and most people associate a demented person with someone who acts like a maniac due to mental illness. Unfortunately, the actual meaning of demented is “Suffering from dementia or a loss of cognitive function” or “Mentally ill; insane.” However, if you’ve ever been around someone with Alzheimer’s or other types of dementia, you would not think of them as crazy or insane. Rather they are like being sadly trapped in a slow body and mind that doesn’t work as it once did, lost in a world they’re unable to describe because they’ve forgotten the words to use.

Learning a New Language

The next few years would have as much impact on me as it did on him as we learned to live together under these new circumstances that dementia forces upon you. I began to feel a bit demented just trying to make it through learning the new language that caregivers need to know in order to communicate with a loved one who has Alzheimer’s or other dementia diseases. I call it the ‘love language’ because you need a lot of love in order to understand some things said by your loved one when his mind is decaying and he is unable to find the right words.

Moving Too Fast

My dear husband brought an interesting and rather humorous point to light one day while I was trying to help him with his food. I was getting impatient with his slowness instead of letting him do it at his own pace, when he cantankerously said, “I know what your problem is now.” I was taken back because he had not spoken that many words so clearly in some time. So I said, “Oh really, what’s that?”

He softly said, “You move too fast.” I tried not to laugh to keep my promise to myself but I couldn’t help make a short snort of a laugh. I told him he was right even though I know I move a lot slower than I used to but yet it’s much faster than he’s able to move so it seems like I’m moving fast to him.

I can only imagine how frustrating it must be for him to see everyone whizzing around while feeling as if he was stuck in slow-mo. I think of myself as slow compared to younger and healthier people, but to him, I was moving way too fast and he needed me to slow down.

That night is when I accepted that this was to be a journey for both of us, not just him. My intuition was telling me I needed to change the way I was looking at the situation in order to survive the huge challenge of taking care of my precious loved one. I never dreamed that some good times would come out of this seemingly devastating situation.

Crazy Fun Guy

What’s really ironic about his being afflicted with this condition is that his friends used to kid him, calling him “Crazy” because of the way he was, but it was meant in a fun, wacky way because he just was not normal! It was in a way you can’t really understand unless you had the privilege to know him. Many thought of him as “crazy” because he had no qualms about speaking his mind, most times without regard to other people’s feelings. He always said exactly what he was on his mind without beating around the bush and didn’t care what anyone thought of him for it.

He had his own unique way of standing up for himself and I admired him for that. It was one of the things that made me fall in love with him and over the years I think a little of his strong personality rubbed off on me. So now that I’m his caregiver, I’m sure it will come in handy at the times when I need to stand up for him because he’s unable to do it for himself.

Acceptance

I started writing this article four weeks after he came home from his last stay at the nursing home following his third surgery in four months. The surgery was to save his life due to the threat of dying from gangrene that started in his right toe spreading to his foot and then his leg. In the effort to save his leg, the third surgery was the last resort to save his life by amputating the leg above the knee.

Even though it was upsetting to see him like that, I accepted him just as I’ve always accepted him just as he is. I’m sure this was one of the reasons our marriage has survived for almost 30 years. Actually, the physical disability was easier to handle and accept than his mental dysfunction.

A Control Issue

I realized later that Bob’s unwillingness to sign over his medical decisions to me was one way he could still have some control of what was happening to him and he just couldn’t accept giving that up. His well-known stubborn streak was still very much there—it was part of what I call the ‘Dumas Demeanor’ that he has passed on to all his children. I had learned to live with it but at the same time, learned from it how being assertively stubborn at times can work to your advantage when necessary. So ultimately, he helped me build up my self esteem.

During this time, I was in some sort of denial, just as most wives are at the beginning of the decline in the health of the strong leader of the husband they had married. I believed that if he was not ‘sound of mind’ he wouldn’t be so adamant about not allowing me to make his decisions. After hours of sitting with him in the hospital, exhausted from the ordeal of the past few months, I declined to fight the issue any further with him.

Blessing in Disguise

Things had a way of working out better after that and his dementia became somewhat of a blessing in disguise due to the fact that he became a quieter, more gentle man. The silver lining was that I was able to talk to him more than I had ever been able to before. He would actually listen, which was something he had a hard time doing before because of his attention deficit disorder. Now he would just sit back and smile as I talked about whatever was on my mind. So there were some advantages to his dementia but I missed the lively man that I married.

We spent the next couple of years enjoying each other until he passed away. As much as I thought I was prepared for his death, it was still a gigantic shock, and I grieved for about a year before things seemed to get easier. The things I miss the most about him is his humor and the way he put me on a pedestal. I was blessed to have known him.

By Jessica J. Dumas

If you like my story, I sure would love it if you tipped me. Thanks!

You can also read more about us in my book called One Last Flight Lesson available on Amazon.com. It is about how we met, how he saved me from my first abusive husband, how he taught me how to fly and taught me how to love myself again, and how our family grew as we spent 30+ years together, and how it ended sadly when he passed away. The eBook is only $2.99.

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