http://www.open.salon.com/blog/scanner/2012/04/18/stepping_into_the_unknown#comment_2904683

Do you know Scanner?
If not, you should.

You are right, this is a tough subject. I was shocked to learn while watching the women's NCAA basketball tournament that Pat Summitt, the University of Tennessee coach and the winningest coach in college basketball history, is retiring because she has been diagnosed with Alzheimer's. I believe she is still in her fifties. Like autism in children, it seems as if this disease is becoming rampant among older people, and obviously, some not so old.
At 67, I think about it, but do what I can to stay engaged and active. Not that that helps because who could be more active than a college basketball coach? R

Jon...
God...how did I do that. Will go back an edit.

Jon...re-read. Will read Scanner's post. Haven't before. I do know him.

Gerald...you are absolutely right. Activity does not stop...but might delay. In any event it interrupts the best laid plans...as they say.

Bless you for this courageous piece.
r.

My father is in the last stages of dementia. I miss him even when I am in the same room with him.

With the Baby Boom bubble rapidly travelling into old age, I fear we have not planned for the sheer impact of it.

Kosh...pretty bad. Talk about dementia(lightly of course)
Twice I called you Jon. Maybe you two are becoming one in my mind.
I'll blame it on my packing and rushing to write between chores.
Yikes! I'm a dumb old bat in hurry.

Linn...you are correct. The financial impact is going to be huge. I know that my children are not going to able to care for us at home. It is a huge worry. We are trying to save for that...at the expense of enjoying some of the "bucket list" adventures and home updates that we would enjoy. Between college expenses and elder care...families in the middle are going to be squashed.

Been dealing with "it" for a decade. My Dad died of "it", my mother is dying of "it" and my older brother has "it." I am waiting for "it"to manifest in me... and I will deal with "It" on my own terms. It sucks!

Mac, thanks for commenting again. I hope others read your comments and understand how many of us might be afflicted. If medicaid is cut back and nursing home costs rise...and long term care is doubled in premium payments, as they are threatening to do.. not sure what will happen. I hate to call this an epidemic waiting to happen...but it is.

Your family has been devastated by "it"....hopefully you will not.
Again, I appreciate that you came back ....

Ande, as you know my mom has Alzheimers and has been living in a nursing home since last May. I think my grandmother had it too (her mother), but they called it "senility" back then and she, too, spent her final years in a nursing home. I may get it too.

Ande,
Did I advise you to go back and edit something, or was that actually Jon? I told you about Scanner's post, though he's done more than one on the topic recently.

No, no, no, Jon is the OTHER liberal Jewish guy who writes Zionist stuff and has spent a lot of time in Maryland and been to China and used to write One Sentence Sunday. (Well, there's Traveler, but I don't think you'd confuse him with us, and he never wrote One Sentence Sunday.) He writes more about gay issues than I do, though we both feel the same way about it, and I write more about economics than he does, though we probably both feel the same way about that, too. He sings, I play. He posts daily, I don't. He writes short comments, I write comments that are often longer than the posts they're responding to. He's been a macher in real life; I haven't. His avatar gives PIP a whole new meaning, mine's a graphic design. He blogs under his own name; my wife is not Mrs. Salaami.

Got it?

Erika, I did not think of that. When my grandmother had "it" they called it senility. Although some memory loss is caused by hardening of the arteries....I think the results are very similar. My nana, however, did not act up, the way my mother did. My mother was quite vocal.
Like Elsa she would say things that were out of character with her early self. It was very difficult to take her to a restaurant, never knowing if she would start a fight with someone. That happened early on. .... I hope my kids tape my mouth.

Kosh...lord I hope not..if we are talking about the same 'it' ...you do have to laugh at the timing. You are Kosh and not Jon...right?

I worry about this too - for me and for my parents

I am fairly old. I have problems finding the right word. But I know approximates and Google gets me on track. I am still reasonably cogent but also never catch all the typos in my comments. Spellcheck helps me there but my vocabulary is larger than spellcheck and a typo can result in a correct word, but the wrong one. My long term memory has always been lousy but these last couple of years my short term memory seems to be getting worse I think up the word I need and then, just before I write it down it disappears. The SOB that works that part of my brain is either goofy or playing tricks.

Nobody will give me a real job at my age so I have to discipline myself to work up some sort of demanding routine everyday that demands my occupation. It involves real exercise, walking a couple of kilometers twice a day through the nearby woods over side paths with protruding roots, over icy and snowy sections that require me to balance carefully. It keeps all my senses active when I do it in the dark avoiding accidents. I fall regularly but get up again unhurt.
I eat carefully, avoid meat, keep my weight down, take vitamins, anti-cholesterol pills, and pills to keep acid from my stomach. I've never smoked, dislike alcohol and read quite a bit and surf the net for scientific and technical news and some politics to keep me up to date but that's mostly baloney.
My diurnal rhythms are weird and sleep can be a problem but I do the best I can.
What else can one do?

One of my best friends lost her mother to this disease; she was in her early fifties and I recall the mixed feelings each child of hers endured before she died in a nursing home.

Research requires money and scientists everywhere are lacking funds due to budgetary constraints and other restrictions, including some whose denials for funding are premised upon religious beliefs...stem cell research is the new kid on the block; should we curb this kid or should we allow it an opportunity to provide testable results which could satisfactorily improve the circumstances surrounding a disease which will undoubtedly find itself at your doorstep...

Lammchops...not sure there is an answer right now. But Jan Sand is doing all the right things. Learn about some of the meds that are available are said to slow "it" down. As yet there is nothing that I know of that will prevent.

Thank you Jan..I am sending you a message.

Belinda, you are correct. Research costs money. Let see how this plays out as more and more are afflicted. Perhaps this might provoke some "free" research from some of the larger foundations. There is a lot of money out there. Please understand what I am saying...not as a diminishment for any other disease or disability. But Dementia is not pretty and it is not curable. There are not a lot of pretty people getting up to talk about it. Nancy Regan was the exception. We should each have a "piggy bank" in the house and drop our quarters in there. We can call it our 'it' fund. But I think that we are so frightened that we cannot deal with the reality of 'it'.

As part of the conversation, here's another post on dementia:

http://open.salon.com/blog/brunhilde/2012/04/20/dementia_one_persons_moral_response

Drink copious amounts of coffee!!! Seriously. I''ve read the daily consumpation of this caffeinated concoction helps those with altheimer's. Articles in NPR and other reliable sources are there as well as those citations found @ PubMed website.

What else can one do? Great question. In my view from the Memory Center where I work, you can relax. So much of life is attitude and unfortunately we have to give some of our patients chemical restraints because they can't relax. Other people are happy and content in their confusion. I really hope that I have cultivated a point of view in life that if I do lose my mind I will enjoy it. I am not making light of it but some of the people I work with are a joy and some are violent.
One lady who is in the end stages kissed me on the forehead many times as we were toileting her. It takes two of us now. She smiles and says thank you. She doesnt try to hit us as some do. Now I have to say that the fellow who bopped me on the head last week when we were trying to get him out of his chair is a favorite. We all love him in spite of his attitude and we feel so good when we can get a smile out of him. He has been at our center every day for four years. We used to dance.....
The government quit paying for veterans to have day care like we offer and our enrollment went way down. Now someone had found another department to run the funds thru and the vets are back and so appreciative. In nursing homes I always liked that the poor people were taken care of right next to the rich ones as the government covered the cost and it covered the cost of the rich ones after they took all their money leaving a house and car for the spouse with s small stipend. Some people gave all their money to the kids before that happened but that was not possible anymore. I don't know everything about the financial part of it all but I know government money helps.
I wonder how the rest of the world copes with this increase in memory loss or is it just our nation? I think the crazy old people are just accepted and life goes on around them. Someone is always home. Here in our big empty apartments and houses no one is home to mind granny and granny can be so contankerous no one wants to be near her. You are right it is a growing problem.

Brunhilde...I am going there after I reply to a few comments.
Glad we are opening this up for discussion.
Belinda, I would be flying. :) Already taking something to keep me down.:(
Zanelle, you are one of those angels who give care and love to those who do desperately need it, but cannot speak to you of it. When my Mom died I was in Florida. She was in New Hampshire. The person who spent the night with her was the maintenance man. How fantastic is that?

From Brunhilde's post.Please read it in it's entirety.

Her words:
"Frankly, dementia scares the hell out of me. It is a torturously personal phenomenon, and will shortly become a huge public health crisis. The historical approach to countering public health problems (cholera, polio, AIDS, etc.) has been effective prevention, but it is unlikely that preventive measures will be found to forestall dementia, at least for the larger numbers of my gen"eration. For all our demographic might, when it comes to this disease we're essentially on our own, individual by individual, family by family."

Important writing, Ande.

Thank you Sarah. And for your previous comments as well.
I think Brunhilde wrote an excellent piece.

Alzheimer's is the cancer of the boomer generation:

Alzheimer’s disease is NOT a normal part of aging. It is a fatal brain disease that cannot AS YET be prevented, cured, or even slowed. Alzheimer’s disease is the 6th leading cause of death in the U.S. and the 5th leading cause of death for those aged 65 and older.

Deaths from Alzheimer’s increased 66 percent between 2000 and 2008, while deaths from other major diseases, including the number one cause of death (heart disease), decreased. Approximately 5.4 million Americans are living with Alzheimer’s—5.2 million aged 65 and over, and 200,000 under the age of 65. By 2050, that number is expected to grow to 16 million.

More than one in seven individuals with Alzheimer’s lives alone and are, therefore, at higher risk for inadequate self care, malnutrition, untreated medical conditions, falls, and accidental death.

In 2011, 15.2 million family and friends provided 17.4 billion hours of unpaid care to those with Alzheimer’s and other dementias—care valued at $210.5 billion. More than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; one-third report symptoms of depression. Due to the physical and emotional toll of caregiving on their own health, Alzheimer’s and dementia caregivers had $8.7 billion in additional health care costs in 2011.

Go to www.alz.org for more information

Beauty thank you for posting those stunning statistics.
It can be likened to the epidemic that is sliding under the door an odorless gas. Bless those who give care.

Many years ago I wrote a poem about Alzheimer Syndrome. No doubt ir idealized the horror but it's a thought.

ALZHEIMER'S, HOPEFULLY

What relief to be free
Of the morass of memory,
To watch the articulated past
Fade away, at last.
No more do a crowd of ancient faces
Squeeze my heart with clamps of loves, hates, disgraces.
Forgetfulness has called off all bets,
All expectations, all regrets.
Pure sound, pure scent, pure light
Are restored to their childish delight,
Unfiltered by past judging,
By other people=s other thoughts always nudging,
Always asserting the relevance
of social intelligence.
Now I can be free by the hour
To stare, fascinated, at a flower.

Sorry, as usual, typos but not too bad ones.

Your poem is lovely, Jan. Some of the words in it share commonalities with autism.

"Dementia is not about your choice. It chooses you." Exactly.

My mother is suffering from it now. It's part of my life whether I like it or not.

I'm right with you Ande. My 80 year old dad is now in a memory care unit. Few realize how devastating it can be. They stand, they walk, they talk. But they - the they we knew for so many years - are gone. They die, but they leave a living body behind.

$600,000?? I'll kill myself before I allow that kind of money to spent on me if I develop dementia.

Ande~ More and more you are finding your voice. I absolutely adored this post, and it made me reflect... I will now go and read TURNING.

Jan, it is a beautiful poem. I really thank you for sharing it with all of us. It is another way to look at 'it'.

Cranky...I like you not so cranky self. Thanks for your comment and message. Please write again....soon...:)

Desert Rat...unfortunately you won't know. And unless you are without funds...no more tha $2,500....total....you do not qualify for aid. It is another governmental night mare. It took me months to fill out the application for my mother as I had to separate my parents assets. After all....my dad needed care too. Nursing homes cost around $4-7,000 per month. Assisted living about $3,000. I did not have the facilities to bring my parents to my home. They both had serious medical issues beyond memory. If you are concerned about care, you need to have a sit down with family to make your wishes known. This is all very, very hard. We joke about it...but it is financially, mentally and emotionally exhausting.

Thank you Princess. I'll look for your comment on that. It is a sad story.

Dementia scares the hell out of me. at 62 I stay as active as the Fibromyagia allows me to. Sleep deprivation is the the most critical contributor to my and anyone's well being. And I have that big time. Great post, Ande./r

I'm with you. I've written about this here for three years; today I just can't say anything else about it. One of those grieving days.

Christine, I have that nasty affliction as well. Living with it..and doing OK. Also have it's cousin trigeminal neuralgia. That is what gives me more trouble. Sharp pains in the face and head. Thank you for this comment and your many others.

Bernadine. Thank you taking the time you did. Some day when you are up to it, send me the links. Perhaps if we all get together we and produce a Blog that encompasses the different posts and comments.
Feel better.

Great post. Rated.

Gordon, thank you.
Can you tell us if Dementia and Alzheimers are as big an issue in Brazil as they are in the US? I would be very interested in knowing that. Look forward to your comment.

You speak with commendable understanding. Great post. I also enjoyed Jan Sand's comments. R

Thoth...Thank you.Re: Jan Sand. As did I. His take is important.
We all should listen.

SELF

The mind is smoke.
A kind of elemental funny joke
To leave a ghostly smile
For just a momentary while
Across the space
Of the ephemeral face
Of time.

It carries scent
Of accomplishment,
An evanescent signature,
A wistful hope to endure
Scribbled across fate,
An eagerness to participate,
A whisper in the wind to say
Something interesting passed this way.
A notion sublime.

I'm watching it take my father. It is one of the cruelest most insidious conditions around. It's terrible for sure to watch someone waste away from cancer, which I've also done. But to see someone dying from the inside out is even more horrible. And it's more than a growing problem; it's largely a disease of aging and with people living longer, it's going to explode. It would be nice if it got half the focus breast cancer awareness has.

Jan, your poetry is amazing. I love it.
"A whisper in the wind to say
Something interesting passed this way...."

Thank you..thank you...
Anne

My dear Margaret....the very point of these essays. Dementia and Alzheimers doe not discriminate. We need to make it a priority.
I am so sorry about your father. We are all crying together. Please understand this is not about a few of us. It is about all of us. In terror together. :(

ADD can mimic "it" when you are older. I prefer to think of my short-term memory problems as part of ADD, which I have always had. But you know what helps, I'd bet? Writing!

I'm with Lea on the ADD similarity. I'm hoping that my having learned to compensate for ADD all my life will give me an edge when dementia eventually comes a'calling. And I agree with her that writing is good exercise for the synapses.

I, too wish to salute Jan for his poetry. Indeed sublime.

My sister is considered to have early onset dementia. I am terrified that this is in the cards for me, too. It's so unfair and hard to see someone who was always sharp and funny become someone so afraid and confused. God bless all who have "it" and all who love them.

My sister is considered to have early onset dementia. I am terrified that this is in the cards for me, too. It's so unfair and hard to see someone who was always sharp and funny become someone so afraid and confused. God bless all who have "it" and all who love them.

Jan,so you brought two of your poems to this post?
You are amazingly talented.
And I love your sense of humour.
Thank you for being so frank about your weakening condition.

Like Zanelle, I worked with dementia patients for about three years, and would like to point out of few small glimmers of hope.

One, medication for Alzheimer's is improving, so is early diagnosis. Combine the two, and you can stave off the worst of it for up to several years. It does seem to be inherited, if a blood relative has it, you might get it, and you might not.

I don't know of any mental conditions that are "curable" , however millions and millions of people live normal lives who have severe forms of it because (expensive as it is) modern pharmacology does work on brain disorders.

But none of that is going to help if the person is surround by people who have already given up. There is life in there, even if you can't perceive it, even if they can't remember you, you can remember them.

End stage of life mirrors birth stage. We go from being helpless to a functioning adult, and as we age, we return back to the helpless state. They are as vulnerable as any infant, I hope people just hug them anyway, even if they don't know who you are, they can still feel the love.

Oh,Jan,
one more comment:
I admire your disciplin with which you bring structure into your day.I guess that must be the reason why you could reach a biblical age and are still in fairly good condition.
Best of all:Your contributions to OS are a blessing.

I believe so many of us can replace your name with ours in the opening sentence - that's how relevant and far reaching your piece is. I remember my Mother saying that my grandmother was turning senile because she uttered strange things or became forgetful, but that was the extent of my knowledge of this ruthless disease. Alzheimers was not known as it is when we were children, whereas it is becoming an epidemic as we parent our parents. Thank you for opening up this conversation, Ande - it is a needed one.

R♥

Lea and Chicken Maan.
I did not know about ADD and its likening to Dementia...
Thank you for pointing that out.

Lydieth, perhaps 'it' will not be yours as well. I keep hoping that mother's will not become mine.

Heidi...Jan is amazing. His poems are outstanding.

Kate...that is encouraging. Maybe, one day there will be a vaccine to stave of the effects of dementia. Who knows? We can hope. The only drug that was available to my mother was very costly. By the time we knew what we were dealing with she had changed from bewildered to lost. At that time the drugs she was given were to calm her and then she descended into a deeper place. Given her 97 years it was a relatively short part of her life.

Fusun A...all parenting is a learning experience.Hopefully we can help each other..Caring for the elderly requires strength and patience. The emotional toll is unbelievable. With children you have the the right or position within the social order to discipline etc. It is not so with parents. It is a struggle and it is as unnatural for you as it is for them. My mother hated me to stop her from banging her spoon on the table. My father hated it when I took his keys or insisted he use a walker. Again..as I have said before. It is very hard.
Very, very hard.

Being a bit late finding this and there now being 61 comments, I'll spare you most of mine for the moment except to tell you I did search through your earlier posts to read "Like Bea" after reading "Turning". Because like so many of us here, I have by now a number of Alzheimers-related experiences -- alongside whatever fears &/or precautions we have for ourselves, I do also want to tell you that over many many years of maintained friendship with a contemporary who lived virtually in terror for years of Alzheimers because of his father's AZ history, the last time I phoned him he sounded SCADS more cheerful than he has for AGES. Guess why? Because he's been diagnosed with it!! I guess that for him there's clarity and relief, surprising as that may sound! Plus, the only member of my family to have developed AZ (so far, any way) was a nurse before she married and her oldest daughter went into nursing with specialisation in AZ -- which always struck me as amazingly providential and which served to help both of them through the course of her illness. Not wanting to play Polyanna, and most especially I am not denying or meaning to minimise the horrors and difficulties you face! But I do just want to suggest that though few of us have Jan's poetic gifts, there ARE possible "lightenings" in this overall tale. I hope you'll find them, and SOON!!

R+

I have had only one direct peripheral experience with Alzheimer's Syndrome. A friend of mine's father came down with it and she had to put him in a nursing home when he became violent and destructive. I accompanied my friend several times on her visits to him. The home was ostensibly pleasant but the people in it were locked in for their own safety and as far as I could see there was good medical care but the people, as with an insane asylum, were met with force when they attempted to escape or revolt at their supervision or reacted violently. I have no idea what good close relationships were there between the nursing staff and the patients but the confusion and misunderstanding of the patients naturally aroused angry emotions and there seemed little more that TV to keep their minds active. I don't have TV now and I don't miss it but what I did see of it a few years ago would drive me nuts with boredom if I had any mind left. I imagine chimpanzees in the zoo are similarly privileged. I didn't witness any actual sadism but I had intimations that violence sometimes evoked retribution from the staff and this distressed me. There were faint flavors of "One Flew Over the Cuckoo's Nest" but I cannot really judge what went on. With myself sanity is maintained by integrating myself into a demanding routine which keeps me on track but I am more or less mentally normal though something of an unsocial oddball and no real signs of Alzheimer that are apparent. The world in general these days seems far crazier than me but admittedly a good deal more brutal than the medical facility. If I lived still in New York City where I was born and grew up rather than Helsinki I probably would be frozen to death in a cardboard box or a dumpster in an alleyway rather than making out as well as I currently am.

But it is certainly not the place I would prefer to live the last years of my life. I would prefer to die in the woods with small curious animals looking on and the smell of summer and fresh growth suffusing the atmosphere.

I am not Biblically aged yet. I gather Methuselah lived almost a thousand years.

Podunkmarte..if you read my comments on others post, perhaps your own, if I learn something I note it. I am not in any sort of catatonic state about getting dementia. But it is a real possibility and I fear it. There is a difference. I do not want to be a burden to my children and I don't want to spend everything my husband and I have on nursing care. We have purchased long term care insurance to help with that. Elsa has become unedited even though her rationale seems to have logic....I tried to bring us to her hidden voice...which I think my mother had. It not the dying but rather the living that I fear. The last time I saw my neighbor in NH she had wandered into our backyard, smiling and pleasant...the way she was when she met us 20 years ago. She had no idea who we were. After that the doors in her house were locked. Her husband was afraid she would end up in the woods which surround our property. A couple of months later, he had to give up home care and put her in a nursing home. She died there a couple of months after that.

For whatever reason...we are not giving dementia enough notice. We are accepting it..like lambs. This is not good enough.
AZ disables, diminishes, destroys families and relationships and in the end kills. My mother ate some brown mush ....it was supposed to be meat. The waitresses were wonderful....but she wasn't.

Regarding your post: I have extrapolated the hope. I always look for sunshine...and I am thankful that you came to the discussion with a positive message. And I did learn something. Let us have hope.
Thank you.

Ande,is that what we are in for?Not a very pleasant perspective.I hope that by the time we have reached this age group, good
medication will be the answer.
~Rated~

Jan, you are incredible writer. I am overwhelmed by the soul that I find in your words. I wish that I lived near you so that we could sit on a bench together... preferably on a warm day.

Re: your comment,
Most of the 'units' as they call them now are locked. The tend to sedate rather than restrain..but sundowning is an issue. I have never taken to small spaces and confinement.

Your words:
"But it is certainly not the place I would prefer to live the last years of my life. I would prefer to die in the woods with small curious animals looking on and the smell of summer and fresh growth suffusing the atmosphere."

My words: I have such a place in mind. I am building it in a short story.

Heidi, I am not trained to answer medical questions. I do know that many of us will not get it. It tends to follow families. Hopefully, new meds will stave it off in the early stages. I have no answers...just questions. My mother's answer to everything was que sera.... if I am sufficiently aware of changes within my own self...I will seek help early on. However, most people tend to ignore and deny their own failings. They cannot differentiate normal forgetfulness and early onset. There are books and seminars about recognizing symptoms. It might help with unnecessary fear if we have more knowledge.
Thanks for coming back.

I have to say that Jan did very good work here.

This is something that touches so many lives. You write about it fearlessly.
rated with love

This is a topic that truly scares me. My Grandmother died with Alzheimers and I realize it's an inherited disease. My Dad is starting to go down hill mentally, but I am not sure of the cause. Is it Alzheimers or is it because of his heavy drinking coupled with all the prescription drugs he takes? I don't know, but it scares me. We all depend on our mental capacity and abilities to function and to enjoy life. True, if we lose our minds completely, we won't be aware of it, but the rest of our loved ones will!

We're going through Alzheimer's with my father-in-law (who is not so old) and it is so very sad. Thanks for writing about this topic, both in this post and in Turning. As people live longer, it will only become a bigger health care crisis. Take care, Ande, and keep writing - both for yourself and for others!

Jennifer, I am so sorry. The more comments I get the more I realize that we are not waiting for an epidemic...it is here. Thank you for being part of this discussion.

I too, have some anxiety about that. But I learned from my grandmother that one's loving nature--to the extent one has it-- can survive the gradual onslaught.

Patrick, I think you make a very good point. However, I have seen even the most quiet and loving "turn" when their ability to edit is lost.
Let us all hope we are not a victim and that we can maintain our mental facilities as long as possible. As always, thank you for joining the conversation.

I think a lot of us are running from this topic, hoping against hope that it won't catch up with us. My mother was always crazy. In my family, we all knew she did crazy things - starting as early as my memories of her. But it was just last September when she was evaluated for an assisted living community that I heard someone outside the family say that she could not make decisions. That was a moment without the benefit of air to breathe.

Keep talking - I will keep listening and reading.

Thanks nilesite...I think that I will leave this alone for a bit and just answer comments. I hope that you will escape "it"....as do I.