OT: Alzheimer's Awareness Month and Wellness

[diggerfoot]

June is Alzheimer's Awareness Month. During the course of this month I am presenting a "wellness pyramid" on my blog. I draw from the twenty or so articles I receive every day for the past few years in relation to Alzheimer's or brain health. Though my doctorate's is not related specifically to brain chemistry or physiology, I have a research background in the field of biology and extensive, intimate experience with dementia, as a few of you know. As temery and Lurker could confirm, for a few years now I've maintained that oxidative stress, not amyloid plaques, is more the direct cause of dementia symptoms. The distinction matters for how people deal with the disease. Over time the research increasingly has backed me up.

This is not something I'm attempting to monetize. Dementia has smacked me around through five years of caring for my Mom under our roof at the beginning of our marriage, caring for my spouse for what will be the last 7+ years and caring for my father-in-law for a few months in the middle. The benefit I get from encouraging my friends on the Boneyard to check out the wellness pyramid on my blog this month is simply to smack dementia back.

Be well,
Kirk Sinclair
Norfolk, CT

 

[BroadwayVa]

June is Alzheimer's Awareness Month. During the course of this month I am presenting a "wellness pyramid" on my blog. I draw from the twenty or so articles I receive every day for the past few years in relation to Alzheimer's or brain health. Though my doctorate's is not related specifically to brain chemistry or physiology, I have a research background in the field of biology and extensive, intimate experience with dementia, as a few of you know. As temery and Lurker could confirm, for a few years now I've maintained that oxidative stress, not amyloid plaques, is more the direct cause of dementia symptoms. The distinction matters for how people deal with the disease. Over time the research increasingly has backed me up.

This is not something I'm attempting to monetize. Dementia has smacked me around through five years of caring for my Mom under our roof at the beginning of our marriage, caring for my spouse for what will be the last 7+ years and caring for my father-in-law for a few months in the middle. The benefit I get from encouraging my friends on the Boneyard to check out the wellness pyramid on my blog this month is simply to smack dementia back.

Be well,
Kirk Sinclair
Norfolk, CT

Dementia---has been treated as a SIN--and the treatment of those with it has been a SIN. The manner in which treatment has turned around, some of which is related to IED/Military brain damage, is in the right direction. I've seen relatives show signs, we didn't reognize immediately, and after a period begin the quick slope to dementia--my personal belief is the patients do better with family--family however have REAL problems living with the patients. More and dedicated research from all avenues is required--it may not be ended but the lives of victims (Family and patients) may become better.

 

[Bliss]

A horrible disease that robs one of his or her life; a death sentence. Watched it take my mother and am now watching it take my wife.

 

[BroadwayVa]

A horrible disease that robs one of his or her life; a death sentence. Watched it take my mother and am now watching it take my wife.

Sorry---my feelings after reading your posting ---Aw! Crap.--Meaning two terrible situations--more than any person should endure.
But I'm sure you know what I mean--

 

[diggerfoot]

A horrible disease that robs one of his or her life; a death sentence. Watched it take my mother and am now watching it take my wife.

I'm not going to bump up this thread after every submission I make this month on wellness, but I would like to respond to your situation, which obviously is similar to mine. The wellness pyramid would be beneficial to anyone, but it was designed specifically with caregivers in mind. This next post on Contentment may be particularly relevant.

The last six months for my Mom, the months she spent in a nursing home, were the toughest for me. I had no regrets that after caring for her under our roof for almost five years she spent those last six months in a nursing home. Yet watching her will to live deteriorate in a nursing home was tougher emotionally than caring for her.

I learned from that experience, plus I know much more about brain health now. Brain health, emotional health, life expectancy, they all are correlated, they all depend on quality of life factors. The wellness pyramid can help a caregiver prioritize, plan and pursue what needs to be done to be able to keep a loved one at home while maintaining the highest possible quality of life for both caregiver and patient.

Over the past fifteen years the percentage of people with dementia dying at home has doubled, up to 25% now. Maybe that's because of economics, maybe that's because of greater resources and information to make that happen. In either case it's a trend likely to continue. Yet we tend to be what people perceive and insist us to be. If it's insisted that being a caregiver for a loved one is a burdensome thing, then a burden is certainly what it will be, with a greater risk that the caregiver will be afflicted with dementia as well. The wellness pyramid, and my blog in general, provides an alternative view for caregivers.

 

[KnightBridgeAZ]

Every situation is unique, one that we drew on was voiced by a pastor (my wife's boss) talking about his moral responsibility to care for his parents - but there being no requirement that that be in his home.

When my Mom started to exhibit symptoms of dementia (and the medication from the Neurologist didn't help) we were able to have her live at home for over a year with increasing symptoms; we had someone to help her get up in the morning and to help her prepare for bed, take her meds, etc. However, it did reach a point where we were unable to provide care. The fact that she was in her mid-90's was a factor, she was often awake at night and confused. Eventually, when she couldn't distinguish the bathroom from the living room we had her relocate to a memory care facility. Sadly, our visits meant nothing to her (not only didn't she know us, she didn't recognize that she was being visited, it was as though we were just another staff member), so we did not visit regularly, rather, on a random pattern to ensure that her care was as good as it seemed to be - it was. Something "happened" (maybe a stroke) a week before she passed and the care home owner suggested we get hospice care; she passed peacefully at age 97 about 3 days after the hospice began, at the home where she lived for the last 13 months of her life.

For us this was the right decision. We don't really know whether or not it was Alzheimers because (at her age) the neurologist didn't think it mattered to know. Her death certificate simply said "adult failure to thrive due to end stage senile dementia". But it was very, very sad to see her gradually lose touch with reality.

 

[BroadwayVa]

I'm not going to bump up this thread after every submission I make this month on wellness, but I would like to respond to your situation, which obviously is similar to mine. The wellness pyramid would be beneficial to anyone, but it was designed specifically with caregivers in mind. This next post on Contentment may be particularly relevant.

The last six months for my Mom, the months she spent in a nursing home, were the toughest for me. I had no regrets that after caring for her under our roof for almost five years she spent those last six months in a nursing home. Yet watching her will to live deteriorate in a nursing home was tougher emotionally than caring for her.

I learned from that experience, plus I know much more about brain health now. Brain health, emotional health, life expectancy, they all are correlated, they all depend on quality of life factors. The wellness pyramid can help a caregiver prioritize, plan and pursue what needs to be done to be able to keep a loved one at home while maintaining the highest possible quality of life for both caregiver and patient.

You touched on expenses--a subject some think shouldn't be part of the medical/mental care of anyone--yet it's a horrific factor for some if not many. My wifes sisters husband, a NY transit authority engineer for 30 plus years, developed dementia--signs were there if we had been trained in how to identify, but we are just humans. The point is his actions, words, deeds were more than anyone could take--and he was sent to a local Long Island facility--12,000 something a MONTH. Luckily (crass as it may sound) he died in 4 months--before their savings were depleted. 12,000 per month--per month--to "warehouse" an individual.
Now another in-law has been in a "home" for 8 years and cared for at hTome for 4 years---it is not always a quick spiral to death.
This one was again brought home (I don't know if it is about the costs) and is doing much better with her daughter--

 

[Gus Mahler]

Digger,

I very much appreciate your postings on this subject. I hope you will continue to do so.

I don't have a particular point to make. I just want to add my own experiences on the subject to reinforce to everyone the realness of the problem. Last week we buried our father, 90, who was in the advanced stages of Alzheimer's. We lost our mother to the same disease (plus Parkinson's) in 2011. She went further with the Alzheimer's than Dad. It is a horrible thing to watch. And yes, the two extended nursing home stints completely wiped them out financially.

My sincerest hope is that the American people will someday choose to support medical research to the extent that cures for these horrible diseases might be found.

 

[BroadwayVa]

Digger,

I very much appreciate your postings on this subject. I hope you will continue to do so.

I don't have a particular point to make. I just want to add my own experiences on the subject to reinforce to everyone the realness of the problem. Last week we buried our father, 90, who was in the advanced stages of Alzheimer's. We lost our mother to the same disease (plus Parkinson's) in 2011. She went further with the Alzheimer's than Dad. It is a horrible thing to watch. And yes, the two extended nursing home stints completely wiped them out financially.

My sincerest hope is that the American people will someday choose to support medical research to the extent that cures for these horrible diseases might be found.

Both your Mom and Dad? Interesting--these is a section of people who believe this disease is passed on from parent to child or some other hereditary means. I've seen one case in 2 families and non others going back or sideways. Then I've have seen cases like your Mom and Dad and wonder--is this environment or diet --it appears (in both of those I speak of) where these is none of this disease for at least 4 generations (as far as could be checked). I hope there is such a study because it is immediately important.

 

[Gus Mahler]

Both your Mom and Dad? Interesting--these is a section of people who believe this disease is passed on from parent to child or some other hereditary means. I've seen one case in 2 families and non others going back or sideways. Then I've have seen cases like your Mom and Dad and wonder--is this environment or diet --it appears (in both of those I speak of) where these is none of this disease for at least 4 generations (as far as could be checked). I hope there is such a study because it is immediately important.

I worry about all the above: genetics, environment, diet (processed foods!), etc. It's very sobering.

 

[diggerfoot]

I worry about all the above: genetics, environment, diet (processed foods!), etc. It's very sobering.

In a sense it is all of the above, but the news is not as bad as that may make it seem. Alzheimer's got tagged as such because Dr. Alzheimer discovered a person with dementia symptoms early (51 I believe) who had a pathology called beta-amyloid plaques. Since then Alzheimer's was considered to be dementia symptoms caused by those plaques. Narrowly defined, perhaps, but the most common cause of dementia symptoms nonetheless.

However, people with such plaques have lived long lives without dementia symptoms, while people get dementia symptoms without those plaques (in which case it's not considered Alzheimer's even if the symptoms are virtually the same). Diabetes, poor blood flow, immune deficiencies, aluminum toxicity and other problems have led to dementia symptoms similar to Alzheimer's. The commonality to all this that I've noted and is becoming more of a research focus: oxidative stress, a problem with metabolism where there are free radical electrons wreaking havoc. Many things cause oxidative stress and, in turn, oxidative stress manifests itself in different problems.

You can have a genetic predisposition for amyloid plaques, in which case you also are predisposed to Alzheimer's. Perhaps a pill can cure that someday, likely stopping early onset of the disease, yet one still might get dementia if one's quality of life is such to cause oxidative stress. On the other hand, if you have an exemplary quality of life (like the famous nun study, but a difficult task in our stressful society) you potentially can avoid dementia symptoms even if no "cure" is ever found for Alzheimer's.

To also address Broadway's concern, you could have a hereditary predisposition in other ways besides amyloid plaques. To the extent that high blood pressure is hereditary in a family, you might see evidence of this for what is known as vascular dementia, unless intervening generations are better able to combat the effects of that. On the other hand, caregivers are six times more likely to get dementia. The reason obviously has to do with environment rather than being hereditary, with a caregivers quality of life taking a nosedive. It explains why the dementia might occur in a husband and wife team. The latter is why I've kept a blog on our journey. A caregiver does not have to get dementia as well, as long as they are conscientious about maintaining a high quality of life for both caregiver and patient, but that involves so much more than simply eating healthy. Here's my latest post on what I call the Brain Maintenance level of the wellness pyramid.

Hope this helps you or someone, I truly do. Be well.

 

[Gus Mahler]

In a sense it is all of the above, but the news is not as bad as that may make it seem. Alzheimer's got tagged as such because Dr. Alzheimer discovered a person with dementia symptoms early (51 I believe) who had a pathology called beta-amyloid plaques. Since then Alzheimer's was considered to be dementia symptoms caused by those plaques. Narrowly defined, perhaps, but the most common cause of dementia symptoms nonetheless.

However, people with such plaques have lived long lives without dementia symptoms, while people get dementia symptoms without those plaques (in which case it's not considered Alzheimer's even if the symptoms are virtually the same). Diabetes, poor blood flow, immune deficiencies, aluminum toxicity and other problems have led to dementia symptoms similar to Alzheimer's. The commonality to all this that I've noted and is becoming more of a research focus: oxidative stress, a problem with metabolism where there are free radical electrons wreaking havoc. Many things cause oxidative stress and, in turn, oxidative stress manifests itself in different problems.

You can have a genetic predisposition for amyloid plaques, in which case you also are predisposed to Alzheimer's. Perhaps a pill can cure that someday, likely stopping early onset of the disease, yet one still might get dementia if one's quality of life is such to cause oxidative stress. On the other hand, if you have an exemplary quality of life (like the famous nun study, but a difficult task in our stressful society) you potentially can avoid dementia symptoms even if no "cure" is ever found for Alzheimer's.

To also address Broadway's concern, you could have a hereditary predisposition in other ways besides amyloid plaques. To the extent that high blood pressure is hereditary in a family, you might see evidence of this for what is known as vascular dementia, unless intervening generations are better able to combat the effects of that. On the other hand, caregivers are six times more likely to get dementia. The reason obviously has to do with environment rather than being hereditary, with a caregivers quality of life taking a nosedive. It explains why the dementia might occur in a husband and wife team. The latter is why I've kept a blog on our journey. A caregiver does not have to get dementia as well, as long as they are conscientious about maintaining a high quality of life for both caregiver and patient, but that involves so much more than simply eating healthy. Here's my latest post on what I call the Brain Maintenance level of the wellness pyramid.

Hope this helps you or someone, I truly do. Be well.

diggerfoot, thanks for your enlightening note. And, I've subscribed to your blog.

 

[BroadwayVa]

In a sense it is all of the above, but the news is not as bad as that may make it seem. Alzheimer's got tagged as such because Dr. Alzheimer discovered a person with dementia symptoms early (51 I believe) who had a pathology called beta-amyloid plaques. Since then Alzheimer's was considered to be dementia symptoms caused by those plaques. Narrowly defined, perhaps, but the most common cause of dementia symptoms nonetheless.

However, people with such plaques have lived long lives without dementia symptoms, while people get dementia symptoms without those plaques (in which case it's not considered Alzheimer's even if the symptoms are virtually the same). Diabetes, poor blood flow, immune deficiencies, aluminum toxicity and other problems have led to dementia symptoms similar to Alzheimer's. The commonality to all this that I've noted and is becoming more of a research focus: oxidative stress, a problem with metabolism where there are free radical electrons wreaking havoc. Many things cause oxidative stress and, in turn, oxidative stress manifests itself in different problems.

You can have a genetic predisposition for amyloid plaques, in which case you also are predisposed to Alzheimer's. Perhaps a pill can cure that someday, likely stopping early onset of the disease, yet one still might get dementia if one's quality of life is such to cause oxidative stress. On the other hand, if you have an exemplary quality of life (like the famous nun study, but a difficult task in our stressful society) you potentially can avoid dementia symptoms even if no "cure" is ever found for Alzheimer's.

To also address Broadway's concern, you could have a hereditary predisposition in other ways besides amyloid plaques. To the extent that high blood pressure is hereditary in a family, you might see evidence of this for what is known as vascular dementia, unless intervening generations are better able to combat the effects of that. On the other hand, caregivers are six times more likely to get dementia. The reason obviously has to do with environment rather than being hereditary, with a caregivers quality of life taking a nosedive. It explains why the dementia might occur in a husband and wife team. The latter is why I've kept a blog on our journey. A caregiver does not have to get dementia as well, as long as they are conscientious about maintaining a high quality of life for both caregiver and patient, but that involves so much more than simply eating healthy. Here's my latest post on what I call the Brain Maintenance level of the wellness pyramid.

Hope this helps you or someone, I truly do. Be well.

Nice post. As I have seen those caregivers that don't immediately develop dementia-often,not always, have a shorten life span.

 

[diggerfoot]

Alzheimer's and Brain Health Awareness month is coming to a close. Here are my installments over the month for brain health and wellness. Be well. Go Huskies!

Contentment
Brain Maintenance
Brain Enhancement
Lifestyle Tips

 

[OldAlum]

Such a difficult disease. My dad suffered from dementia (thought to be mostly vascular) for the last 11 years of his life. He and mom were happily living at home when he began to show symptoms (paranoia, forgetfulness) and then mom was diagnosed with two cancers. When she passed away he had progressed and living at home was difficult as all the adult children lived at least an hour away. He went into assisted living about a year later, then memory care and then nursing care. Each transition was necessary but worsened his condition. He died of pneumonia about six years after leaving his home and a year after spending all of his assets.
I do worry that I am the youngest child and without children. If I develop dementia, I will have few family resources. I often wish that the "death with dignity" laws could apply for dementia. (Yeah, I know there are a lot of issues and potential abuses with that) I know my dad would have wanted it.

 

[diggerfoot]

Such a difficult disease. My dad suffered from dementia (thought to be mostly vascular) for the last 11 years of his life. He and mom were happily living at home when he began to show symptoms (paranoia, forgetfulness) and then mom was diagnosed with two cancers. When she passed away he had progressed and living at home was difficult as all the adult children lived at least an hour away. He went into assisted living about a year later, then memory care and then nursing care. Each transition was necessary but worsened his condition. He died of pneumonia about six years after leaving his home and a year after spending all of his assets.
I do worry that I am the youngest child and without children. If I develop dementia, I will have few family resources. I often wish that the "death with dignity" laws could apply for dementia. (Yeah, I know there are a lot of issues and potential abuses with that) I know my dad would have wanted it.

You bring up an interesting concern that I've thought about independently of my current situation. Having been a nomad through my long distance hikes I've always been interested in the cultures and lifestyle of early nomads. The elderly in nomadic culture generally were treated well, revered even, but when it neared their "time to go" they often went away from the group independently, similar to what other social animals do.

Also, nomadic humans generally were more concerned about living well than living long. This contrasts with civilized society where we expect society to help us live longer and be more secure even at the expense of living well.

I've always aspired, even before my current situation, to emulate earlier humanity and not fear death or worry about security and be more concerned about living well than living long. As part of that aspiration part of my hope has been to "hike off into the sunset" when it is my time to go. I prefer to die of hypothermia in the taiga, or having accidentally fallen into a raging creek, than die from dementia related deterioration in a nursing home. That independent approach also spares our children and avoids any complications with "death with dignity" laws. I hope I have the opportunity and determination to carry through with that.