Welcome, Mamma Crew, to another chaotic, exciting, but always beautiful day of an older mom like you!
The world’s Alzheimer’s day is this month. And of course, if you listened to my last episode, you know that I recently found out that dementia runs on my father’s side of the family. And, of course, I am my father’s side of the family’s mirror image.
I find myself having to worry about things that I had never considered before or, if not worry, at least consider it. I’m having to learn that life is precious or, if not learn, let’s say reminded because we are moving so fast in our everyday life, right? We take it for granted that we’re going to be here tomorrow and that tomorrow, we’re going to be healthy. And that isn’t always the case. So, as I explore this possibility, I am researching treatment and long-term care for someone who might develop Dementia or Alzheimer’s.
Now, believe it or not. I was so ignorant that I didn’t understand that Alzheimer’s is a type of dementia that affects memory, thinking, and behavior. All I knew about Alzheimer’s was what you see in the movies or in tv shows, and it always looks horrible! There is no question that the symptoms can eventually become very severe—severe enough to interfere with daily tasks. And often, people who have Alzheimer’s need long-term care. Alzheimer’s specifically accounts for 60 to 80% of dementia cases.
Now, before passing away, my mother developed dementia. But we were told that that was a result of her having diabetes and not taking care of herself. The unexpected part was that it turned out that dementia runs on my Father’s side of the family. And as I said, I’m their genetic mirror image. Unfortunately, that part of the family lives primarily in Mexico, and it’s not that they don’t have access to adequate medical care. It’s that they choose not to take advantage of the medical care that they have access to. So, while I know that they have dementia, I don’t know what form of dementia they have. So, that makes it a little bit challenging on my part.
Unsurprisingly, the most significant known risk factor is increasing chronological age. The majority of people who developed Alzheimer’s are in late adulthood, 65 or older. Now, my grandmother didn’t develop Alzheimer’s till her 70s. My Father is in his 80s, and he’s barely beginning to see symptoms of dementia. If you experience symptoms of Alzheimer’s before 65, it is called early-onset Alzheimer’s, and it’s a whole different category with different challenges.
Alzheimer’s is a progressive disease, where you start seeing dementia symptoms gradually worsen over the years. In the early stages, memory loss is relatively mild. And I shared with you the story of my grandmother where she couldn’t remember how to get to my aunt’s house, but she could remember how to get to my cousin’s school. That was the first time that something was really wrong with her.
Eventually, individuals do lose the ability to carry on a conversation and respond to their environment. My grandmother actually didn’t face that. She suffered a series of strokes starting, I believe the age of 71 or 72, and eventually, she died as a result of those strokes. So, she never lost her ability to recognize family members or to live independently.
My Father, who is in his 80s, still lives independently, but he is starting to forget to do things more often and cannot connect the dots the way he used to. It is impossible to know at this point how far the disease will progress with my Father, in part because my Father has other problems. He has heart issues, and his kidneys are not functioning as well as they used to. So, he might very well find himself in a situation like my grandmother, where he dies before the dementia sets in, and he’s unable to cope or live independently.
I was shocked to find out that Alzheimer’s is the sixth-leading cause of death in the United States. I didn’t realize that. I was very, very surprised! I didn’t think it made the top ten, but I was wrong. On average, a person diagnosed with Alzheimer’s lives four to eight years after the diagnosis but can live as long as twenty years depending on other factors, such as access to adequate medical care, long-term care, a family investment, and medication.
Alzheimer’s, unfortunately, has no cure. Now, more recently, a new medication has come on the market—Aducanumab. This new drug is the only disease-modifying medication currently on the market approved to treat Alzheimer’s. This medication is a human antibody or immunotherapy that targets the protein beta-amyloid and helps to reduce amyloid plaques, which are basically brain lesions associated with Alzheimer’s.
Aducanumab is amazing because participants who can obtain the drug can retain memory for longer and perform everyday tasks longer. So, their quality of life is much better in the short run for a longer period of time than someone without the medication. Before these medications, doctors did give patients some drugs that would delay some of the symptoms of the disease. But the longer that someone would take these medications, the less they would work, if that makes any sense. The bottom line was the medical community could do nothing to delay the progression of Alzheimer’s itself. So, this new drug is just truly amazing.
Of course, a new drug comes with a new patent, and this new drug is incredibly expensive! The wholesale cost is $56,000 a year. It’s also a drug that needs to be infused. So, given the situation, will it really make a difference to people that have the disease? Well, Medicare is going to hold the key on that one. Will Medicare pay for this drug? And frankly, right now, the way things are going with our economy and the rapid inflation we will face, it’s difficult to determine if Medicare will pay for the drug. I think it’s unlikely, and that in it itself, is highly controversial.
On the one hand, it cost billions of dollars to discover and create this drug, and the manufacturer needs to recoup his losses. On the other hand, it is a very expensive drug that is very needed and very beneficial for our elderly. So, we have a bit of a moral quandary going on there. Also, it turns out that doctors are having a bit of a problem adopting this new therapy. I haven’t been able to determine why that is, but I’m new to this research, and I will keep you up to date as I find out more information. This, of course, brings us not to the pink elephant but the grey elephant in the room—long-term care.
Long-term care can be very expensive and difficult to find for people with dementia or Alzheimer’s. So, it’s quite a challenge. On the other hand, it is important for people who know that they have this predisposition to arrange for long-term care and not leave this burden to their families. It is incredibly physically draining and emotionally taxing for someone to care for an elderly person who can no longer care for themselves.
I have always felt so bad that I live so far away, and the burden of helping my mother fell on one of my sisters alone. Now I say “a burden,” not because my sister didn’t love my mother. My sister loved my mother very much, and my mother loved my sister very much. That’s not the point. The point was my sister had a job and a life that she had to live, and she had to stop living it to help my mother.
And of course, one of the things that we found out is that once a person is diagnosed with Alzheimer’s or dementia, they will not be able to apply for long-term care insurance coverage. So, it’s important to head this thing off at the pass and take care of it early. Personally, that’s something that I plan on doing in the next five years because I really don’t want to place that burden on my children. I don’t want them to have to take care of me.
I think it’s wonderful that my daughter says that she wants to take care of me when I’m older, but I don’t want her to have to. And frankly, I didn’t want her to do it at all. I want her to be out there enjoying her life. I want there to be out there taking care of her children. And if she lives far away from me and if she’s too busy to come to visit me and frankly if I don’t even remember her, I hope she’ll FaceTime me. I hope she’ll have the nurses bring the iPad over so that I can see my children. So that they can see me. I will be grateful for that. But I don’t want her life to stop, to take care of me.
Not only is it challenging to find a long-term care facility with someone with dementia or Alzheimer’s, but it can also be prohibitively expensive. We learned this with our mother. It’s very expensive to find a place to take care of someone who has memory loss issues. And of course, there are other things to consider, like the person’s dietary needs and the meal preparation available in the facility. The assistance with personal hygiene and getting dressed, because eventually, someone with dementia or Alzheimer’s will not be able to take care of themselves physically.
Medications management. Management of other diseases such as heart disease, diabetes, or other chronic medical conditions that accumulate the older we get.
Of course, very important, the need for supervision. One of my sisters was working in an elder care facility. Somehow, one of their Alzheimer’s patients decided that the parking lot in the facility needed to be redone, and he ordered everything. And the day came, the contractor arrived, ready to start the job. Of course, the facility had never ordered this. Clearly, there wasn’t adequate supervision. This gentleman had been a contractor or an engineer in his life, and he wanted to take care of business. He thought he was doing the right thing, but that was just not the case. And of course, situations such as my grandmother who became lost, disoriented, and couldn’t find her way to my aunt’s house.
We also need to investigate the facilities care philosophies and your family’s goals for care. I mean, if you’ve been to some of these institutions, and I have. Some of them are very stark and depressing, while others are very comforting and warm. But of course, the nicer the facility, the more expensive they are.
And a lot of times, people do care whether the facility is close to them or not. I think if I had to go to a facility because I could no longer take care of myself or remember my children or my grandchildren, it wouldn’t matter where my kids put me. I would not need to be near them. If that’s convenient for them, they should do that. If that’s not convenient for them, they shouldn’t do it. As I said, for me, it’s very important that my children continue to live their lives despite my potential challenges.
Now, it’s important to remember that just because we have a predisposition to a disease or a syndrome doesn’t mean that we’re going to get it. I’m really handling this possibility with optimistic realism. I’m preparing for the possibility that I may develop dementia or Alzheimer’s. I’ll get long-term care insurance. I have been doing more research on both dementia and Alzheimer’s to better understand it and any potential things that I could do to lengthen my good memory and health. Or anything that I could potentially change so that I remain healthier longer.
I’m not paranoid. I don’t feel fear. I think that with age, new challenges will come. And I’m a prepper! Not a doomsday prepper but a prepper nevertheless. So, I make plans for that potential future, and I make plans in the future that that is not a problem. And in the meantime, I enjoy my life, and I focus on successful aging! And we will be talking about that next! Successful aging and why that’s important to us older moms.
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