Looking back over the years I remember, all too vividly, Mom's dealings with our grandmother's Alzheimer's and decline.
It wasn't until late August or September of 1983 that they received a diagnosis of Alzheimer's, and my grandmother passed April 4, 1984, from congestive heart failure which was attributed, at that time, to the AD.
Not much was known about AD at the time, and we do know more about LBD, PDD, and AD now, but the former two are still not thought of, by the public at large, as real diagnoses. However, they are different, yet are still progressive and lead to death.
After our grandmother died, Mom kept a handle on the Alzheimer's diagnosis. She didn't want people to think there was anything wrong with our family, as she was under the perception it could be inherited, and it would question mental processes within our gene group.
Many years later, Mother was furious with me after she had begun to demonstrate symptoms of decline, when she discovered I had stated that our grandmother had had AD. Mom was quite selective about what she told the doctors, and this was one item that she wanted kept out of the records.
Now, why would anyone have a problem with this?
I recall when cancer was seen as something shameful, but I attribute that to no one truly understanding it, and that some believed it could be contagious. Today, some still avoid needing to deal with the affliction and keep their distance, but it's not because they're afraid of catching it; rather it's because they aren't sure how to deal.
Dementia, in some ways, is very much the same, I'm thinking. People are frightened by what they don't necessarily understand. It's also a frightening reality that it is something that could sneak up on any of us once we reach a certain stage in life, and this is not how the majority view spending their golden years; I know it's not anything close to what Mom envisioned.
Mom had been quite active. She played pickleball, she went hiking 2-3 times a week, she always took walks around the neighborhood, if only to clear her head and think. She participated in bridge clubs, Bible study, book groups, and went to lectures on various topics at the community college and for various lecture series.
She read like a demon. She loved reading books on politics, biographies, and novels that opened her world to something wonderful (she didn't much care for silly romance novels, or mysteries). She was on a mission to learn as much as she could.
Then it stopped.
Her friends (the real ones) were concerned, and still stay in touch with her. Others who weren't terribly close but still cared for her do check in occasionally. But there are those with whom she socialized who haven't even peeped. Why?
Because: 1) Life goes on. People move, pass on to the other world, but we still live in our fishbowls and time robs us of the need to seek those who aren't present. 2) Dementia is something that we don't completely comprehend, and we aren't truly sure how to address it. We live in a culture where we don't look for context or content, but for the immediate gut reaction to something someone says or does; thereby we decide not to spend the time or energy with anything that takes us out of our comfort zone.
Oddly I know many who preach empathy and compassion, and yet they never seem to look into themselves to make it a virtue unto their beings.
In doing my research for this post, I found many articles and studies about the cultural stigma of dementia wherein the stigma of it being a mental illness and lacking in research and funding create an aura of shame, depression, guilt-by-association, and other attributes.
Perhaps it's the Mental Illness component that people respond to.
For the patients, there is a great deal of shame and depression that occurs in knowing they are declining. They are lost and cannot do much about it. They can't reach out and communicate or go about their daily duties as they were once able.
Picture this, you're walking down the street and some person walks up to you and begins jabbering nonsense. What do you do? Do you take the time to figure out what they're really trying to say? Do you attempt to help them? I'll have to say, "No." Because we are frightened and aren't sure what this person is going to do to us - if they're going to be violent, or if they will be something burdensome on our regular insulated lives? I'm just as guilty as the next person.
However, when it comes to our friends, relatives, parents, siblings, or people we've known and trusted for years, why would this be the case? We know how they are, react, think, are motivated. If my neighbor began showing signs of decline, I would, most likely, find a way to help them - either through their family, community support, or something (I feel as though I'm walking a plank here) that would open the doors to find help for them.
The purpose of this post is to ask people to think.
I see the residents of Mom's cottage and wonder who visits them. I speak with some of them, and I watch them interact - such as the two ladies who were carrying chairs to block the hallway to the medroom. I thought it rather brilliant they could be so rambunctious! I laughed, but declined when they asked me to join in.
Many of these people are depressed, and have no one but each other. Perhaps they weren't the nicest people before they declined, and sometimes that has created a strain. Or, they may have children who live elsewhere and/or have families that take their time.
Just remember, how you present to your elders (parents, relatives, friends, or others) teaches the next generation how to take care of you. And there is no shame required.
It wasn't until late August or September of 1983 that they received a diagnosis of Alzheimer's, and my grandmother passed April 4, 1984, from congestive heart failure which was attributed, at that time, to the AD.
Not much was known about AD at the time, and we do know more about LBD, PDD, and AD now, but the former two are still not thought of, by the public at large, as real diagnoses. However, they are different, yet are still progressive and lead to death.
After our grandmother died, Mom kept a handle on the Alzheimer's diagnosis. She didn't want people to think there was anything wrong with our family, as she was under the perception it could be inherited, and it would question mental processes within our gene group.
Many years later, Mother was furious with me after she had begun to demonstrate symptoms of decline, when she discovered I had stated that our grandmother had had AD. Mom was quite selective about what she told the doctors, and this was one item that she wanted kept out of the records.
Now, why would anyone have a problem with this?
I recall when cancer was seen as something shameful, but I attribute that to no one truly understanding it, and that some believed it could be contagious. Today, some still avoid needing to deal with the affliction and keep their distance, but it's not because they're afraid of catching it; rather it's because they aren't sure how to deal.
Dementia, in some ways, is very much the same, I'm thinking. People are frightened by what they don't necessarily understand. It's also a frightening reality that it is something that could sneak up on any of us once we reach a certain stage in life, and this is not how the majority view spending their golden years; I know it's not anything close to what Mom envisioned.
Mom had been quite active. She played pickleball, she went hiking 2-3 times a week, she always took walks around the neighborhood, if only to clear her head and think. She participated in bridge clubs, Bible study, book groups, and went to lectures on various topics at the community college and for various lecture series.
She read like a demon. She loved reading books on politics, biographies, and novels that opened her world to something wonderful (she didn't much care for silly romance novels, or mysteries). She was on a mission to learn as much as she could.
Then it stopped.
Her friends (the real ones) were concerned, and still stay in touch with her. Others who weren't terribly close but still cared for her do check in occasionally. But there are those with whom she socialized who haven't even peeped. Why?
Because: 1) Life goes on. People move, pass on to the other world, but we still live in our fishbowls and time robs us of the need to seek those who aren't present. 2) Dementia is something that we don't completely comprehend, and we aren't truly sure how to address it. We live in a culture where we don't look for context or content, but for the immediate gut reaction to something someone says or does; thereby we decide not to spend the time or energy with anything that takes us out of our comfort zone.
Oddly I know many who preach empathy and compassion, and yet they never seem to look into themselves to make it a virtue unto their beings.
In doing my research for this post, I found many articles and studies about the cultural stigma of dementia wherein the stigma of it being a mental illness and lacking in research and funding create an aura of shame, depression, guilt-by-association, and other attributes.
Perhaps it's the Mental Illness component that people respond to.
For the patients, there is a great deal of shame and depression that occurs in knowing they are declining. They are lost and cannot do much about it. They can't reach out and communicate or go about their daily duties as they were once able.
Picture this, you're walking down the street and some person walks up to you and begins jabbering nonsense. What do you do? Do you take the time to figure out what they're really trying to say? Do you attempt to help them? I'll have to say, "No." Because we are frightened and aren't sure what this person is going to do to us - if they're going to be violent, or if they will be something burdensome on our regular insulated lives? I'm just as guilty as the next person.
However, when it comes to our friends, relatives, parents, siblings, or people we've known and trusted for years, why would this be the case? We know how they are, react, think, are motivated. If my neighbor began showing signs of decline, I would, most likely, find a way to help them - either through their family, community support, or something (I feel as though I'm walking a plank here) that would open the doors to find help for them.
The purpose of this post is to ask people to think.
I see the residents of Mom's cottage and wonder who visits them. I speak with some of them, and I watch them interact - such as the two ladies who were carrying chairs to block the hallway to the medroom. I thought it rather brilliant they could be so rambunctious! I laughed, but declined when they asked me to join in.
Many of these people are depressed, and have no one but each other. Perhaps they weren't the nicest people before they declined, and sometimes that has created a strain. Or, they may have children who live elsewhere and/or have families that take their time.
Just remember, how you present to your elders (parents, relatives, friends, or others) teaches the next generation how to take care of you. And there is no shame required.
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