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Walk To End Alzheimer's (and Dementia)

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Old Sep 21, 17, 10:07 pm
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Walk To End Alzheimer's (and Dementia)

Hello Fellow Flyertalkers,

In a couple of weeks, I will be participating in The Walk to End Alzheimer's. This will be my second year.

My daughter and I are walking in support of my mom and millions of others afflicted by this horrific disease.

My mom has what's called Lewy Body Dementia. It is progressive and doesn't have a cure. Unfortunately, dementia goes well beyond what many people consider "senior moments." My mom has had very vivid delusions, no longer remembers my name and didn't recognize my daughter last week for the first time (my daughter was devastated that her very close grandma had no idea who she was all of a sudden).

This disease turned a physically fit, happy, active, productive woman into someone who, in a matter of months, could not care for herself in many ways and had frequent, elaborate delusions.

I would appreciate any support of Alzheimer's and Dementia victims and know many of you have probably experienced this with your loved ones as well.

My page is:
http://act.alz.org/site/TR?fr_id=102...al&px=12506072.

Thanks so much!
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Old Sep 22, 17, 10:29 am
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I'm on the road, so I'll visit your page and contribute later.

My wife has Alzheimer's disease, so I'm pretty aware of the dementias and how they work. And there are no cures for any of them. Nor is there surefire prevention, particularly as some have genetic components.

With funding of research, I'm hoping in a couple of generations they'll speak of dementias as we speak of poliomyelitis today - few know it or of it, it's largely in our past.

(Donation made.)

Last edited by JDiver; Oct 6, 17 at 10:19 pm
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Old Sep 22, 17, 8:49 pm
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Originally Posted by JDiver View Post
I'm on the road, so I'll visit your page and contribute later.

My wife has Alzheimer's disease, so I'm pretty aware of the dementias and how they work. And there are no cures for any of them. Nor is there surefire prevention, particularly as some have genetic components.

With funding of research, I'm hoping in a couple of generations they'll speak of dementias as we speak of poliomyelitis today - few know it or of it, it's largely in our past.,
Thanks so much, JDiver. I'm so sorry to hear about your wife. The Walk for Alzheimer's last year was eye-opening. I was shocked at how many younger people are afflucted with dementia and Alzheimer's. my mom wasn't that old when she was affected and when she started having incredible delusions, dementia was the last thing i suspected as a diagnosis. The more I learn, the more passionate I become that research has to be stepped up big time!
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Old Sep 22, 17, 9:25 pm
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LBD is a bugger. My sympathies. Did the walks for many years while a caregiver but none are nearby to where I moved to recently. Perhaps we can get a local chapter started. Lots of older folks around.

Something else I'd suggest is, at little cost, participate in a research program if one is available. We had the one from UCSF available to us and it was very comprehensive, both physically, psychologically and geneologically and, with permission (yes with us), they autopsy the brain upon death to add to their body of knowledge of the disease and share it with other research facilities world-wide. I'm in the database since dementing diseases run in my maternal side family so can go active if ever afflicted. The research team they threw at us was impressive. However, it does take a lot of time and the testing can be quite daunting.

Our brand was acute paraphrenic dementia. Basically dementia with psychosis. Delusions and hallucinations similar to LBD but trending to the psychotic. An 80-something woman in a psychotic rage can pack quite a wallop

Support options have changed markedly since my caregiving days, for the better IMO. Caregivers, and patients, have more options than ever. It's still tough but communication and information have brought people together. Good luck with the walk!
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Old Sep 30, 17, 4:10 pm
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Originally Posted by camachinist View Post
LBD is a bugger. My sympathies. Did the walks for many years while a caregiver but none are nearby to where I moved to recently. Perhaps we can get a local chapter started. Lots of older folks around.

Something else I'd suggest is, at little cost, participate in a research program if one is available. We had the one from UCSF available to us and it was very comprehensive, both physically, psychologically and geneologically and, with permission (yes with us), they autopsy the brain upon death to add to their body of knowledge of the disease and share it with other research facilities world-wide. I'm in the database since dementing diseases run in my maternal side family so can go active if ever afflicted. The research team they threw at us was impressive. However, it does take a lot of time and the testing can be quite daunting.

Our brand was acute paraphrenic dementia. Basically dementia with psychosis. Delusions and hallucinations similar to LBD but trending to the psychotic. An 80-something woman in a psychotic rage can pack quite a wallop

Support options have changed markedly since my caregiving days, for the better IMO. Caregivers, and patients, have more options than ever. It's still tough but communication and information have brought people together. Good luck with the walk!
Thanks for this info! Yep, Lewy Body Dementia is a bugger. The potential violence is something we're concerned about. We've seen some biting and minor hitting attempts but have been told that can escalate with LBD. Fortunately for my mom, the violent behavior is pretty rare. It's the delusions that we're dealing with more and more. Fortunately, most are "happy delusions" -- big parties, trip to Vegas, having a newborn baby she enjoys taking care of and more. As long as she's happy, I'm happy.
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Old Sep 30, 17, 7:55 pm
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Glad to read the delusions trend more to typical AD where it's kind of a pleasant mis-belief or mis-remembrance.

I noted the violence more when the hallucinations (visual and auditory) were more florid and the patient was unmedicated or was being baselined. The research team was big on minimal meds and doing everything precisely because they were analyzing data being gathered on the patient and had to balance research, quality of life and turning her into a zombie with a chemical straightjacket.

Most of the people I met in my walks, including a few patients, were typical AD stuff. Very few LBD caregivers, some vascular dementia and only a tiny minority dealing with what we were. However, it was heartening to connect with real people who were dealing with the disease, as it is often very isolating.

Back when few online resources were out there, I ran an online information forum on ProBoards for a number of years and we attracted thousands of caregivers and even had a EOAD sufferer who was a nurse for a moderator, at least before the disease progressed where she couldn't function. Like the walks and connecting with others, there was a real sense of satisfaction giving back and sharing all the information the research scientists were sharing with us.

Science is hard at work and I have every confidence we'll find effective treatments, maybe even a preventative, in the next generation or two. Brain science is still early times and we're learning so much each day. Every bit can improve the quality of life for people who suffer from this debilitating and fatal disease, even if they can't be cured. Best wishes!
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Old Sep 30, 17, 8:07 pm
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Originally Posted by camachinist View Post
Glad to read the delusions trend more to typical AD where it's kind of a pleasant mis-belief or mis-remembrance.

I noted the violence more when the hallucinations (visual and auditory) were more florid and the patient was unmedicated or was being baselined. The research team was big on minimal meds and doing everything precisely because they were analyzing data being gathered on the patient and had to balance research, quality of life and turning her into a zombie with a chemical straightjacket.

Most of the people I met in my walks, including a few patients, were typical AD stuff. Very few LBD caregivers, some vascular dementia and only a tiny minority dealing with what we were. However, it was heartening to connect with real people who were dealing with the disease, as it is often very isolating.

Back when few online resources were out there, I ran an online information forum on ProBoards for a number of years and we attracted thousands of caregivers and even had a EOAD sufferer who was a nurse for a moderator, at least before the disease progressed where she couldn't function. Like the walks and connecting with others, there was a real sense of satisfaction giving back and sharing all the information the research scientists were sharing with us.

Science is hard at work and I have every confidence we'll find effective treatments, maybe even a preventative, in the next generation or two. Brain science is still early times and we're learning so much each day. Every bit can improve the quality of life for people who suffer from this debilitating and fatal disease, even if they can't be cured. Best wishes!
Thanks much for the well-wishes. We did go through plenty of the evil delusions but those tend to be less now and the current ones seem pretty benign. It was tough getting through the "someone trying to murder me" claims.

The way we found out there was a problem to begin with was my mom was "always busy" and "having guests over for dinner." She could never tell me who was coming over. I drove over one day to meet her "friends" as they were coming over for dinner. When I walked in, she had made a nice dinner and the table was set for 4. Of course, there were no guests. When I asked when they were coming as I would love to meet them, she took me into her bathroom and introduced me to her friend she saw in the bathroom mirror. It was real to her.

I learned early on not to correct her. The docs said that if we tell her we don't see anybody or she's wrong, she would think we were lying and no longer trust us. Things progressed quickly from that point.

So sad, as like you say, so little is known about the brain.
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Old Sep 30, 17, 8:28 pm
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Great story. I know, a bit sad, but it is real. The researchers, primarily the neuro-psychometrists, would have me follow a script when the mystery guests would show up and then journal the results.

The main care function tool, as you learned, absent the research, was 'agree and redirect', validating the perception, accepting it and then moving on to something else. Generally, though not always, the perception would fade or be replaced by something else.

When the aliens in the air conditioning vents showed up, I'd ask 'Are they bothering you today? Would you like me to close the vents so they won't look at you? What would you like me to do? Oh, look at this old quilt. Did you make that? That's beautiful. Yada yada.

Watch out for sleep deprivation if in direct care if you haven't yet experienced it. It about killed me. The researchers were tracking me too, physically and psychologically, while I was in direct care. That ended once she was placed in a locked institution.

Helluva way to go, especially after being so healthy, scarily so, until 80.

When I took a look at your page I was reminded of a color I saw just today out in the field by the oak tree, where I took the wind jig from one of the walks and placed it at the grave last year of the cat who hung out with me in the aftermath and helped keep me sane. The purple and the writing on the jig were still there but the plastic had degraded and it didn't spin anymore. Whenever I see purple I'm always reminded of the walks. Darned good exercise too
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Old Oct 6, 17, 11:16 pm
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Originally Posted by JDiver View Post
I'm on the road, so I'll visit your page and contribute later.

My wife has Alzheimer's disease, so I'm pretty aware of the dementias and how they work. And there are no cures for any of them. Nor is there surefire prevention, particularly as some have genetic components.

With funding of research, I'm hoping in a couple of generations they'll speak of dementias as we speak of poliomyelitis today - few know it or of it, it's largely in our past.

(Donation made.)
JDiver,

Thank you so much for your generous donation. The walk is very special and being among a group that understands what caring for someone affected by dementia or Alzheimer's entails is somehow comforting. I know I'm doing everything I can but at times feel helpless.

I think about the stories you have shared and know that your love and caring are selfless. I would like to honor your wife on this walk as well as my mom. I, like you, hope that in the not-too-distant future, Alzheimer's and dementia will be a thing of the past.

Thank you again...My family and I will be thinking about you and your wife tomorrow.
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Old Oct 7, 17, 12:45 pm
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Originally Posted by Mileage Lover View Post
JDiver,

Thank you so much for your generous donation. The walk is very special and being among a group that understands what caring for someone affected by dementia or Alzheimer's entails is somehow comforting. I know I'm doing everything I can but at times feel helpless.

I think about the stories you have shared and know that your love and caring are selfless. I would like to honor your wife on this walk as well as my mom. I, like you, hope that in the not-too-distant future, Alzheimer's and dementia will be a thing of the past.

Thank you again...My family and I will be thinking about you and your wife tomorrow.
I'm both humbled and honored. God speed!
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Old Nov 2, 17, 10:36 pm
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Alzheimer and Dementia are both illness that relates to memory loss and its difficult to handle. I know how its tough especially for family members. My father-in-law died with Alzheimer.
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