May 31, 2012

Alzheimer’s Foundation of America and Senior Helpers Collaborate to Expand Education and Resources in Local Communities

The one-stop resource centers will feature trained community educators who will provide information and resource referrals.

Alzheimer's Reading Room

As the need for education and resources about Alzheimer’s disease and related dementias climbs at an unprecedented rate, the Alzheimer’s Foundation of America (AFA) and Senior Helpers are opening AFA affiliate offices within 11 Senior Helpers franchises from coast-to-coast to service the growing population affected by the brain disorder.

The AFA Care and Resource Education Services (C.A.R.E.S.) affiliate offices will open their doors beginning this summer, including seven that will kick off on June 1.

A Time To Grieve

The people we cared for and loved will be with us forever.

By Tom and Karen Brenner
Alzheimer's Reading Room

To every thing there is a season, and a time to every purpose under heaven.

Although this is the last thing most caregivers want to face, it is important to try to prepare for the final letting go; that moment when the person we care for will leave us forever.

There is no real way to completely prepare for this eventuality. Even though we know that this is the final destination of the long and winding road of dementia care, it is impossible to know how we will feel, how we will act when that final moment of letting go happens to us.

May 30, 2012

Lilliane Asks a Question and is Seeking Advice

What is the best way to deal with this?

Alzheimer's Reading Room

Reader Lilliane asks.

Question: More than once, he has been impatient and challenging to friends ... in public ... like snarling at someone or being really unreasonable.

I haven't told anyone about the AD as it would feel like a betrayal, and I feel certain he would be horrified if I did say anything.

One good friend, whose mother had AD, recognized it for what it was but others just think he's getting really ornery. His speech at times is also questionable. This is becoming awkward.

What is the best way to deal with this? Thanks in advance.

Please use the comments box below this article to add your insight and advice.

May 29, 2012

Alzheimer's Caregiving Mind over Matter Leads to Happiness (1)

"Confidence is that feeling by which the mind embarks in great and honorable courses with a sure hope and trust in itself." -- Cicero

Positive effective Alzheimer's caregiving is about mind set in my opinion. How does a person go about developing the "right" mind set while dealing with a world filled with Alzheimer's disease?

Alzheimer's Caregiving Mind over Matter Leads to Happiness
I am sitting here thinking about my initial feelings and mind set as I was learning for the first time that my mother, Dorothy, was suffering from dementia.

The First Day of the Next Stage of My Life

I learned a great deal during my tenure as an Alzheimer's caregiver. Much of what I learned relates to life. Living life.

By Bob DeMarco
Alzheimer's Reading Room

Yesterday seemed like the first day of the next stage of my life.

A bit eerie right now for sure. I can do anything I want to do, any time.

I went and had my hair cut. Went to the store and did some grocery shopping. I went over to the pool and stayed 15 minutes. There was nobody there but me. I did get my daily Vitamin D injection. I need some Vitamin D for sure.

May 28, 2012

I'm Getting Plenty of Rest, and Starting To Wake UP

Yes, I am feeling more emotional. I was wondering where the feelings went.

By +Bob DeMarco 
+Alzheimer's Reading Room

I am getting plenty of sleep. This morning was the first time I slept until my regular wake up time, 7 AM.

For the last couple of days I have been feeling very dull, numb perhaps. I felt the emotion(s) starting to come back as soon as I opened my eyes this morning.

I feel a little buzz in my body, a kind of electricity. Not the kind of electricity you feel when you get excited, almost like a bit of anxiety.

I think some of the emotion is ready to come out of me. I guess I am a little "tender" at the moment.

May 27, 2012

Dotty Looked Beautiful in Death

I believe in prayer, and I believe your prayers made a difference.

By Bob DeMarco
+Alzheimer's Reading Room 

Dotty Looked Beautiful in Death | Alzheimer's Reading Room

When Dotty died she just stopped ticking. Her jaw never dropped. Not even her lips. She did sound like a perculator, but she never winced, cringed, or evidenced any sign of pain.

As she was dying I put my cheek on her cheek and held her. I whispered in her ear and told her to go into the light. I said more, but for now that is between Dotty and me.

After a bit, I turned my head and looked up at the ceiling just in case Dotty was up there.

Donations In Memory of Dorothy DeMarco

I continue to be amazed by your kindness and generosity.

By Bob DeMarco
Alzheimer's Reading Room

Many of you are asking me how you can make a donation in Dotty's memory. I had not given this much thought.

Several are asking how you can donate to the efforts of the Alzheimer's Reading Room?

It is my intention, based on your inquiries, to turn the Alzheimer's Reading Room into a non-profit.

There are many things I can do to improve the site, and to make the website more effective. My first efforts would be on adding more ways to communicate the message. If you donate to the ARR now, your donation will not be tax deductible. It will take a while to file all the paperwork to achieve 501(c)(3) status (non profit).

The donate button is appearing for the first time today in the upper right hand side of this website.

David Cameron Launches National Dementia Challenge

"Dementia is a terrible, heart-breaking disease – and tackling it is a personal priority of mine. Two months ago I promised that we’d lead an all-out, national fight-back against dementia – and it’s happening." This world leader gets it, I strongly suggest you watch this entire video.

Alzheimer's Reading Room

David Cameron Launches National Dementia Challenge
David Cameron
David Cameron, the Prime Minister of the United Kingdom, launches measures aimed at making the UK a world leader in dementia care and research, as part of his 'National Dementia Challenge'.

Three key areas where Government aims to make a difference have been identified:
  • making sure health and social care systems are properly geared up to deal with the crisis
  • radically stepping up research into cures and treatments, with overall funding for research doubled to reach £66m by 2015
  • getting society involved in the fight: communities, charities, businesses

Transcript: Prime Minister David Cameron’s Speech on Dementia to the Dementia 2012 Conference

"We’re going to work relentlessly to improve lives, to help hundreds of thousands of families to take the fight to dementia. ~ David Cameron

Alzheimer's Reading Room

David Cameron
"Every day charities and volunteers undertake countless acts of kindness, like running dementia cafes where people can get together and get support. 
This is just the kind of thoughtfulness we need much, much more of. 
So we are issuing a call to action across society… 
…for people to come forward and do more to help those with dementia".

May 26, 2012

Young People Back Dementia Challenge

"This is simply a terrible disease. And it is a scandal that we as a country haven’t kept pace with it. The level of diagnosis, understanding and awareness of dementia is shockingly low. It is as though we’ve been in collective denial". ~ David Cameron

By Bob DeMarco
Alzheimer's Reading Room

As part of Dementia Awareness Week, David Cameron, the Prime Minister of the United Kingdom, today called on up to 30,000 National Citizen Service young volunteers to help people with dementia by giving their time in care homes around the UK.

The scheme forms part of a national dementia challenge aimed at raising awareness and understanding, improving the lives and experiences of people living with dementia, and helping make our communities more inclusive.

May 25, 2012

Remembering Dorothy O. DeMarco, Video

Produced by Kristen Totaro (Dotty's granddaughter)

Dorothy Olive DeMarco, 1916 - 2012

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." 
~ Thomas Moore

Dorothy Olive DeMarco, 1916 - 2012
Dorothy O. DeMarco

Dorothy O. DeMarco born June 29, 1916 died at 5 AM, May 25, 2012.

She is survived by her two sons F. William and Robert DeMarco, her daughter Joanne Totaro, her three grandchildren Stasia, Kristen, and Chad, and two great grandchildren Ryan and Kaitlyn.

Dorothy was a good old girl.

May 24, 2012

Dotty is Still With Us, 6:40 PM, May 24, Its Getting Closer

Dotty is not thrashing around, or showing any signs of pain.

By Bob DeMarco
Alzheimer's Reading Room

Dotty is Still With Us, 6:40 PM, May 24, Its Getting Closer
Dotty is clearly evidencing the near death breathing that is often called the "death rattle". From time to time it slows, but not in the last few hours.

Dotty also has a fever which is being controlled. She is still warm though.

Dotty has been unresponsive for more than a day now. Although, she has had a few moments where she opened her eyes, and even tried to smile back at me. Also, at the social worker that came by from Hospice today.

Carole Larkin Geriatric Care Manager and Dementia Specialist (Audio Interview)

Alzheimer's Reading Room

Carole B. Larkin is the Geriatric Care Manager for ThirdAge Services, specializing in all forms of dementia care. She has a Master of Applied Gerontology degree with a specialty in Aging Services from the University of North Texas.

Carole trains home care companies, assisted living communities, memory care communities and nursing homes in dementia care techniques to enable a higher quality of life for persons with dementia and their families. She has training in mediation skills and works with eldercare attorneys resolving difficult family issues regarding dementia.

Dotty is Still With Us, 7:13 AM, You Who I'm Awake You Know

Was Alzheimer's an automatic death sentence? No, it was not.

By Bob DeMarco
Alzheimer's Reading Room

Right now Dotty is still with us. I'm going to spare you some of the details, but Dotty has stopped urinating.

This comes as no surprise as the amount of liquid intake yesterday was at the minimum.

It seems to me as if Dotty's body is shutting down in an orderly, yet slow, progression. Her spirit has yet to soar out of her body.

Yesterday can best be described as hair raising. None of this was caused by Dotty.

May 23, 2012

Sue Wonders -- Am I Prepared for Dotty's Death?

Sometime after Dotty passes, I'll take a few minutes and take a series of long deep breaths. I'll blow away every single negative aspect of Alzheimer's disease in my life. I will dismiss the negative. I'll hold on to all the positive.

By Bob DeMarco
Alzheimer's Reading Room

I actually wrote this response to Sue's comment on Tuesday, June 15, 2010. I think many of you will find it of great interest. You can read my response in full below Sue's comment and question. Comments and observations are welcomed.

Sue Ronnenkamp entered this comment under the article -- Dotty Continues to Amaze Me.

A recent story about Bill Moyers and his retirement included this quote of his: "I have known all along you need to know when the time has come to exit. There is a time. There is a season." This applies to retirement and to our lives.

I'm happy for you that your mom has recovered so well and so quickly - but I do hope that you are also preparing mentally and psychologically for her exit from this world. Even those who are your mom's age and in good condition (like my dad) don't want to live forever. Many, many older adults pray for an easy and fast death when the time comes so that's what I pray for and wish for them. Since your mom will not be able to make this decision for herself, you will need to make it for her when the time comes. I know death of our loved ones is a great loss but death can also be a great blessing in old age.

Dotty is Still With Us, 5:08 AM, Dotty Continues to Amaze Me

I will discuss crisis care with Hospice by the Sea today. If I get the assurance that I get to make the veto call on the drugs; and that, the crisis care nurses will be instructed by Hospice about our wishes before they come in, I'll accept the crisis care.

By Bob DeMarco
Alzheimer's Reading Room

It is 5:08 AM, Wednesday, May, 23, 2012, Dotty is still with us. Dotty continues to amaze me.

I fell asleep for a couple of hours. I think I was dead out (no pun). My head and body are parallel to Dotty. She is in a hospital bed and I am in her bed. Our heads are about five feet apart, on a direct straight line.

I feel like a cat. I wake up and it seems like my ear shoots up into the air, and turns to listen to Dotty. Just like a cat.

She is breathing in a perfect rhythm. I can't believe it. I listen for a while. Perfect. Perfect cadence. Music to my ears.

What the heck.

May 22, 2012

Alzheimer's, Hospice Crisis Care

Hospice Crisis Care is provided by a team of hospice nurses and other team members, in home, for as much as 24 hours a day.

By +Bob DeMarco 
+Alzheimer's Reading Room

Alzheimer's, Hospice Crisis Care

Very early this morning I had to call Hospice for a nurse. Basically for an evaluation, some advice, and some basic education.

I wanted to make sure that I understood the situation, the stage we were in, and more or less, the meaning of what I was seeing with Dotty.

I was seeking clarification and understanding. This is how I cope best.

Hospice sent the runner, the nurse that runs around from patient to patient from 1 AM to 9 AM. I learned in these last two weeks that night is worse than day. This is the pattern for us. Dotty and me.

This was the second visit from a wonderful, caring, compassionate, extremely competent nurse named Beth.

Neuron-nourishing Cells Appear to Retaliate In Alzheimer’s

"There must be a secondary process toxifying the amyloid; otherwise the neuron would self-intoxicate before it made a big plaque. The neuron would die first.”

Alzheimer's Reading Room

Drs. Michael Dinkins (from left),
Guanghu Wang and Erhard Bieberich
These researchers hypothesize that this lipid-coated package ultimately kills them both, which could help explain the brain-cell death and shrinkage that occurs in Alzheimer’s.
“If the astrocytes die, the neurons die,” Erhard Bieberich said, noting studies suggest that excess amyloid alone does not kill brain cells. “There must be a secondary process toxifying the amyloid; otherwise the neuron would self-intoxicate before it made a big plaque,” he said. “The neuron would die first.”
This is interesting research, so I thought I would bring it to the attention of those following Alzheimer's research developments.

Dotty is Still With Us, 6:24 AM, But Declining

I wrote this because I understand that many of you have become invested in this end of life experience along with me.

By Bob DeMarco
Alzheimer's Reading Room

Dotty is clearly declining and has been for about 8 hours.

I am starting to notice pauses in her breathing. She is not in a cycle of fast slow breathing. I think the best description would be her breathing is abnormal.

She is not eating, and now she isn't drinking.

She does have some respiratory congestion.

May 21, 2012

Dotty is Still With Us, Telling It Like It Is

Can there be any greater act than after caring for a person for a very long time -- then, being with them when the end is very close? When the end comes you really don't have to do much -- just be there with them.

By Bob DeMarco
Alzheimer's Reading Room

Some people are speculating that things here in Delray Beach might be worse than I am letting on. That the situation is chaotic, and that I might be under more stress than I am letting on.

Not true.

I am not saying it is easy, but I am not frightened, and I don't think Dotty is frightened.

Soon Dotty will reach the end of her physical life here on earth. Hopefully, when the bridge to the next life opens, and the light shines bright, I'll be there to help Dotty cross the bridge.

Just like I have been helping Dotty for a long time. I want to be there right at the end. Very badly. I need to be there.

Dotty is Still With Us, Monday 7 AM, Its Very Quiet

Dotty is not agitated, hallucinating, or "crazy".

By Bob DeMarco
Alzheimer's Reading Room

Dotty is still with us. She is very comfortable so far.

It has been very quiet around here since last evening. Deathly quiet.

Dotty is not moving round or adjusting herself in her bed, although she does move her arms, and her legs up and down on occasion.

For the longest time yesterday she did not open her eyes, or move.

May 20, 2012

Am I the Most Fortunate Alzheimer's Caregiver in the World?

I have been thinking about this for some time -- Am I the Most Fortunate Alzheimer's Caregiver in the World?

By Bob DeMarco
Alzheimer's Reading Room

Please Note: I wrote the article below on August 12, 2010 (my birthday). Since then the blog has grown, and so have the number of people that know and love Dotty.

If I ever doubted that I am the most fortunate Alzheimer's caregiver in the World, I won't any longer. Your outpouring of love, compassion and prayers can best be describe by me as -- mind boggling.

At this time, Dotty is resting comfortably, and is getting weaker and weaker. Her pulse is steady around 36.

The Source of My Inspiration to Help Alzheimer’s Patients

At times, she really thought she was my sister, and scenes of sibling rivalry were played out. By the time I was 8 or 9, I was clearly her caregiver. No one assigned me this task, but I clearly felt a strong sense of responsibility toward her, and I became the protective one.

By Max Wallack
Alzheimer's Reading Room

The Source of My Inspiration to Help Alzheimer’s Patients
I know I have written about Great Grams many times in the past.  Helping care for her as she lived with Alzheimer’s Disease shaped my life as a young child, and, now, as a college student.

I am an only child, and Great Grams was really more like a sibling to me.  When I was very young, she was one of my caregivers. It was like having an older, protective, sister.  As her disease progressed, she became a playmate.  At times, she really thought she was my sister, and scenes of sibling rivalry were played out.  By the time I was 8 or 9, I was clearly her caregiver.  No one assigned me this task, but I clearly felt a strong sense of responsibility toward her, and I became the protective one.

Dotty Still With Us, 9 AM, Sunday, A Difficult Night for Sure

I woke up around 1 AM and distinctly heard a change in Dotty's breathing.

By Bob DeMarco
Alzheimer's Reading Room

On Death and Dying
Dotty is still with us. Things have taken a turn for the worse. She is comfortable right now, but is more disoriented than ever before.

Oddly, I was able to sleep more last night than any other night, but right now I am feeling tired. A different kind of tired. Not physical, more mental. I definitely used a lot of cognitive energy last night.

Here is the background and scenario.

May 19, 2012

Talking With Dotty

I feel that in some way deep down Dotty did understand that I was merely the voice for all of you.

By Carole B. Larkin
Alzheimer's Reading Room

Talking With Dotty
Carole B. Larkin
For the last week or so I have served as an unofficial consultant to Bob in relation to some aspects of hospice care.

My vocation as a geriatric care manager has given me opportunity to be exposed to a number of people with dementia who are at the end of their lives.

I have tried to give Bob some benefit of my knowledge and experience in relation to the things that he and Dotty currently are experiencing.

Dotty Still With Us, 5 AM, Saturday, Detailed Update

Dotty is not agitated and is not acting crazy. Occasionally, she might call out mom, mom.

By Bob DeMarco
Alzheimer's Reading Room

Good morning, afternoon, evening or night, depending on where you are.

Dotty is still with us. She seems to be comfortable. However, she is not moving at all. She does have a cough. It is sporadic, and we have some medication for the cough.

Yesterday, she only ate a few teaspoons of chicken broth and a bit of water melon. I continue to get water and Boost into her. She is still peeing quite a bit and the liquid is definitely moving through her.

Her urine was okay late last night. I am getting ready to change her shortly. This has been a real chore. Nevertheless it gets done. I'll update how this goes later today.

May 18, 2012

Alzheimer's Gene ApoE4 Causes Brain's Blood Vessels to Leak, Die

A team of scientists from the University of Rochester, the University of Southern California, and other institutions found that ApoE4 works through cyclophilin A, a well-known bad actor in the cardiovascular system, causing inflammation in atherosclerosis and other conditions.

Alzheimer's Reading Room

Berislav Zlokovic
"Our study has shown major neuronal injury resulting from vascular defects that are not related to amyloid beta. This damage results from a breakdown of the blood-brain barrier and a reduction in blood flow.

"Amyloid beta definitely has an important role in Alzheimer's disease. But it's very important to investigate other leads, perhaps where amyloid beta isn't as centrally involved." -- Berislav Zlokovic

Research Provides New Cues on How ApoE4 Affects Alzheimer's Risk

The researchers found that the high-risk variant, ApoE4, triggers an inflammatory reaction that weakens the blood-brain barrier, a network of cells and other components that lines brain's brain vessels. Normally, this barrier allows nutrients into the brain and keeps harmful substances out.

Alzheimer's Reading Room

"The study demonstrates that damage to the brain's vascular system may play a key role in Alzheimer's disease, and highlights growing recognition of potential links between stroke and Alzheimer's-type dementia," said Roderick Corriveau, Ph.D., a program director at NIH's National Institute of Neurological Disorders and Stroke (NINDS), which helped fund the research. "It also suggests that we might be able to decrease the risk of Alzheimer's disease among ApoE4 carriers by improving their vascular health."

Dotty Still With Us 9 AM, Some Enchanted Evening

As I was rubbing her feet, Dotty's eyes popped open and she gave me that sweet little Dotty smile.

By Bob DeMarco
Alzheimer's Reading Room

Dotty didn't say anything most of the day yesterday even though I talked with her quite a bit. She was saying a lot with her face.

Around 6 PM I was standing at the tip of her bed, smiling at her. Out of the clear blue sky she said, "Bobby, I'm thirsty". I might add in a strong voice.

A couple of hours later I went once again to the tip of her bed and started rubbing her feet. I think the feet go first. This was the case with my father.

As I was rubbing her feet, Dotty's eyes popped open and she gave me that sweet little Dotty smile.

May 17, 2012

Individuals With Dementia More Likely to Die at Home Than in Nursing Homes

The researchers determined that a majority of care for those with dementia, even advanced dementia, is provided by families. The results challenge previous assumptions.

By Bob DeMarco
Alzheimer's Reading Room

This study of 4,000 families indicates that at the time of death 46 percent of dementia patients were at home, 35 percent were in a hospital, and 19 percent were in a nursery facility.

While many might find these numbers surprising, I don't. It is not uncommon for a an older person to express there wish to die at home. This was Dotty's wish.

Dotty Still With Us, Hospice Comes Through with an Angel

Did Hospice send us an Angel? An angel among us?

By Bob DeMarco
Alzheimer's Reading Room

Right after I wrote this morning, we entered into what can best be described as a period of chaos and stress.

Dotty's temperature started to climb steadily, all the way to 99.6 (Dotty's core temperature is 97.6). In addition, Dotty couldn't move her right arm. She was experiencing severe pain in the arm, particularly around her wrist. I discovered this when I was trying to move Dotty to change her briefs (also known as incontinence wear, and diapers). Dotty could not move that arm.

As a result, I could not get her new brief off, nor could I get her situated to administer a suppository for fever. I tried several times and I concluded I couldn't/wouldn't do it by myself. I did get the soiled brief off as it turned out.

My first attempt to get a Hospice nurse did not go well. We will skip over this part of the story and get to the important part.

Dotty is Still With Us, Thursday, 7 AM

Its a new day, and I continue to deal with the situation.

By Bob DeMarco
Alzheimer's Reading Room

Dotty is resting comfortably. So comfortable that she is not moving. It is getting very difficult to move her, as she won't cooperate, and she doesn't like it.

Her temperature is up a touch, so I am watching that closely.

She is not talking, although she occasionally says a few words.

She is not responding when I talk to her. Sometimes she opens her eyes, most times she doesn't.

May 16, 2012

Dotty is Still With Us, Wednesday, 4 PM

I am now saying this with confidence.  Even though Dotty won't be able to say my name, or might ask me, who are you?, Dotty will know me.

By Bob DeMarco
Alzheimer's Reading Room

Dotty is resting comfortably right now, although her breathing is labored. It is very difficult for me to give you an assessment because at times I feel confused.

The biggest news so far is that out of the clear blue sky, Dotty ate a scrambled egg yesterday. For almost a week, I could not get her to eat anything even though I tried everything under the sun.

When she agreed to eat water melon, we turned the corner on the pattern. She went from refusing to eat, to eating.

Today so far she will eat water melon, you should see the look on her face. I'm tempted to make a video. She looks like she is really enjoying the melon. She is also drinking some Boost and some water.

I'll try egg or chicken broth with pastina shortly.

Alzheimer's and Dementia News 139

Critics Call Government's Alzheimer's Plan Unrealistic and More

By Bob DeMarco
Alzheimer's Reading Room

Critics Call Government's Alzheimer's Plan Unrealistic -- ABC News
"It's great to have the attention drawn to the disease and have a temporary blip in funding," Dr. Samuel Gandy, a professor of Alzheimer's disease research at Mount Sinai School of Medicine, told ABC News. "But this is at least an order of magnitude off the figure that is likely to have meaningful impact."
Read More

New Drug Trial Seeks to Stop Alzheimer’s Before It Starts -- the New York Times
In a clinical trial that could lead to treatments that prevent Alzheimer’s, people who are genetically guaranteed to develop the disease — but who do not yet have any symptoms — will for the first time be given a drug intended to stop it, federal officials announced Tuesday.
Read More

May 15, 2012

MetLife Foundation Recognizes Alzheimer's Researchers with Awards

Alzheimer's Reading Room

MetLife Foundation today announced the recipients of its 2012 Awards for Medical Research in Alzheimer’s Disease: Clifford R. Jack Jr., M.D., professor of Radiology and The Alexander Family Professor of Alzheimer’s Disease Research at Mayo Clinic (Rochester, MN), and Christine Van Broeckhoven, Ph.D. D.Sc., professor and department director of the VIB Department of Molecular Genetics at the University of Antwerp (Belgium).

In addition, Randall J. Bateman, M.D., associate professor of Neurology at the Washington University School of Medicine in St. Louis, is recipient of MetLife Foundation’s Promising Investigator Award.

Obama Administration Presents National Plan to Fight Alzheimer’s Disease

“This is a national plan—not a federal one, because reducing the burden of Alzheimer’s will require the active engagement of both the public and private sectors.”

Alzheimer's Reading Room

The plan, presented today at the Alzheimer’s Research Summit 2012: Path to Treatment and Prevention, was developed with input from experts in aging and Alzheimer’s disease issues and calls for a comprehensive, collaborative approach across federal, state, private and non-profit organizations.

More than 3,600 people or organizations submitted comments on the draft plan.

I would be interested in your comment on the HHS’ new website, . The website offers resources and support to those facing Alzheimer’s disease and their friends and family.

You can comment in the Add New Comment box below this article.

Dotty is Still With Us, Tuesday, 4 AM

I'm re-learning something important here. I'm learning that the dementia clock is very different than the clock in the real world. Relative time is very different for the ill dementia patient. You have to be extremely patient, more patient than most of us can normally stand.

By Bob DeMarco
Alzheimer's Reading Room

It's 4 o'clock in the morning, I am awake. I slept for about 4 hours. I still had that heavy feeling when I woke up, but I was anxious to check Dotty out, and now I am wide awake.

Dotty is still with us, and is comfortable.

The truth right now I am a bit confused. Dotty had her best night in the last week plus. No moaning or talking, just rest.

I can't say that she is real aware so far, she went back to sleep after I gave her some water to drink.

May 14, 2012

Resveratrol Clinical Trial for Alzheimer's Now Recruiting New Participants

Resveratrol is derived from plants and is found in highest levels in red wine and the skin of red grapes. The Copenhagen City Heart Study (Treutlen et al 2002) reported that monthly and weekly consumption of red wine is associated with a lower risk of dementia.

Alzheimer's Reading Room

A phase II clinical trial examining the effects of resveratrol on individuals with mild to moderate Alzheimer’s disease has begun recruiting new participants.

More than two dozen academic institutions are participating (see the list below).

Resveratrol is derived from plants and is found in its highest concentration in red wine and the skin of red grapes.

There is compelling evidence that caloric restriction can improve overall health by activating a class of enzymes known as Sirtuins.

If you are interested in participating in this clinical trial read the inclusion and exclusion criteria below. Locations and contact information are also included.

Dotty is Still with Us, 10 AM

By Bob DeMarco
Alzheimer's Reading Room

Dotty is still with us this morning.

She is resting comfortably, but continues to go down hill slowly.

Her urine appears to be okay, and I will get a better read on that once the Hospice nurse arrives.

Her pulse is dropping.

May 13, 2012

A Letter to Dotty

By Max Wallack Alzheimer's Reading Room

 Dear Dotty,

Happy Mother’s Day, Dotty. I will miss you.

I was “introduced” to you not long after Great Grams passed. You have kept alive for me the real life day-to-day coexistence with someone who is deeply forgetful.

I lost Great Grams when I was only ten. While I don’t think my memories of her fade, I know you were instrumental in reminding me about her, each and every day. You entered my life just about the time that my decision to devote my life to helping Alzheimer’s patients was being made. You strengthened my decision with every story, every video, and every cinch cast.

You confirmed my belief that there was “more there.” I could hear it in your singing and see it in your beautiful coloring.

Happy Mother's Day, and More There

When Joanne went into Dotty's room she was basically out it. I said rather loudly, Mom, Joanne is here. Dotty's eyes snapped wide open and she started talking to Joanne.

By Bob DeMarco
Alzheimer's Reading Room

Happy Mother's Day to all the mother's around the World. A special wish to all of the mother's on this website.

Dotty is still with us this morning. Happy Mother's Day mom.

A special thank you to everyone in the Alzheimer's Reading Room for your kind thoughts, words of encouragement, and prayers.

May 12, 2012

On a Scale of One to Ten I Would Call Me an 8 Right Now

The big question though, would I be feeling this way without you all?

By Bob DeMarco
Alzheimer's Reading Room

I'm pretty tired but there is good news all the way around. I just had a nap for one straight hour. Right in the bed next to Dotty.

In 4 hours or so Joanne will be here. Two heads are better than one, so are 4 hands as I learned this week.

I'm doing pretty good I think. I am physically tired but emotionally I am doing good.

I started getting prepared for this many years ago. It is paying off right now.

Dotty Speaks from Her Bed

I recorded this on May 11, 2012 at 11 AM.

Dotty is dying. While there is nothing harsh in this 55 second audio, I suggest you consider what effect it might have on you before you listen.

Some you could find this podcast disconcerting. I hope not. This is not our intention.

Frankly, I thought the many of you that are sending us your love and prayers might like to hear from Dotty.

May 11, 2012

Comments Like Manna from Heaven

Alzheimer's caregiving is an act of compassion and love that is given freely. In my case, an act of life.

By Bob DeMarco
Alzheimer's Reading Room

Comments Like Manna from Heaven
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It was written that manna is "a fine, flake-like thing" that arrived like the frost on the ground. Exodus states that raw manna tasted like wafers that had been made with honey.

For me, in this modern age, the comments, thoughts and prayers we are receiving from around the world are like manna from Heaven.

This modern day manna for us is a kind of food that energizes and brings with it an emotional strength that is hard to describe in words. This manna brings out, and strengthens the spirit.

My Thoughts Right Now, May 11

Let's just say its difficult right now.

By Bob DeMarco
Alzheimer's Reading Room

I don't want to mislead anyone, but you know how I am, I see things in my own way. I could use some pretty heavy, negative words to describe what is happening, but I can't and I won't.

Let's just say its difficult right now. My mother is dying.

I had two major missions in life in the last eight and one half years: to bring to my mother the highest quality of life possible; and, to keep my mother right here in our home until the end.

It looks like I am on the precipice of accomplishing both. Thank God.

May 10, 2012

Can Reducing Brain Activity Improve Memory?

John Hopkins researchers suggest a potential new therapeutic approach for improving memory and interrupting disease progression in patients with a form of cognitive impairment that often leads to full-blown Alzheimer’s disease.

Alzheimer's Reading Room

Michela Gallagher
“Apart from a direct role in memory impairment, there is concern that elevated activity in vulnerable neural networks could be causing additional damage and possibly promoting the widespread disease-related degeneration that underlies cognitive decline and the conversion to Alzheimer’s Disease.”

“Therefore, reducing the elevated activity in the hippocampus may help to restore memory and protect the brain. It will require a carefully monitored, lengthier clinical trial to determine if that is the case.”

It Was a Rough Night for Dotty , Me Too

I told a few people back in January when Dotty started sticking her head into my chest in the morning, I think Dotty has completed her mission on earth. She just seemed very content and loving.

By Bob DeMarco
Alzheimer's Reading Room

It was a rough night for sure. Dotty kept waking up. At times Dotty would start saying, Bobby Bobby Bobby. I'm right her mom. Every time she said okay, and relaxed. We have dim light so Dotty can see me. That Dotty can see like a hawk.

Dotty is sleeping in a hospital bed, and I am sleeping in a bed right next to her. Deja Vu of sorts.

Last time around, my father Frank (Franny) was in the hospital bed, and Dotty was the one sleeping in the bed next to him.

Same room, same bed, different hospital bed.

May 9, 2012

Hospice by the Sea is in Our Home

By Bob DeMarco
Alzheimer's Reading Room

After a series of snafu's by the office of our personal care doctor's office, Hospice by the Sea is in our Home. I might decide to make an issue of the doctor's office later, but for now lets move on.

The Hospice had a nurse out to us within three hours of receiving the paper work. Two hours later we had a hospital bed, oxygen, shower chair and commode.

I expect to get a visit from our lead nurse tomorrow.

Dotty is now having trouble breathing, and she is clearly stressed out by all of this.

Of course, she really can't understand what is going on right now.

Dotty Wants to Stay Home, and She Can't Eat, Not Won't Eat

I don't want to go anywhere, I want to stay here, I want you to take care of me, I'll do whatever you want me to do -- Dotty Says.

By Bob DeMarco
Alzheimer's Reading Room

Dotty Wants to Stay Home, and She Can't Eat, Not Won't Eat
Last night I had another one of those remarkable experiences with Dotty. One of those more there experiences.

Each time I get a more there from Dotty I am completely and totally amazed. Amazed even though I know beyond a doubt that there is more there when it comes to the deeply forgetful.

I'll tell you what Dotty said and told me, and then I will fill you in on the details.

After talking to Joanne (my sister) late last night Dotty told me in a state of angst,

I don't want to go anywhere, I want to stay here, I want you to take care of me, I'll do whatever you want me to do.

May 8, 2012

Dementia Care is not a 9-5 job!

Unfortunately for my Dad he did have hallucinations that night which resulted in 100 mgs of Seroquel being administered. Thus, began my Dad’s downward spiral into a personal hell we are still struggling to correct.

By Ellen Belk
Alzheimer's Reading Room

This is a Call-to-Action to the myriad of ‘service providers’ that litter the landscape of Senior Care.

The operations, organizations and companies that cater to the care providers of the memory impaired.

Please keep in mind, that although your offices may shut down at 5pm each day and are closed on weekends, those of us who seek your help after hours are left to fend for ourselves in serious moments of crisis.

If you aren’t available, where are families to turn in their greatest moment of need?

It's Way to Quiet in Here Right Now

No doubt Dotty is scared. She just can't figure out what is going on.

By Bob DeMarco
Alzheimer's Reading Room

No swing channel on the television, no constant yakking. Quiet.

I had to go talk to Harvey so his feelings wouldn't be hurt because Dotty is not paying attention to him. So no Harvey repeating away, or singing with us.

No 90 minute trips to the john, no constant laments, I'm hungry, I'm starving. Quiet.

What is the saying, "be careful what you wish for"?

It is kinda peaceful, too peaceful. Eerie actually.

I Learned That When I Changed So Did Dotty

During my metamorphosis and in the period of greatest burden I had many breakthroughs and realizations. Each event led to the next.

By Bob DeMarco
Alzheimer's Reading Room

Last night I was pacing up and down and thinking. Before I go to the Bunkhouse this is what I do, pace. I have been doing this since I was in High School. I think better when I walk.

Carole Larkin called to see how Dotty was doing. This morning Dotty is not doing well, so far.

I told Carole I was thinking back to the last time Dotty was really sick, couldn't walk and was generally out of it. That happened in January - February 2011. The problem and condition persisted for 6 weeks. Then one day, Dotty stood up on her own. It was like night and day.

I clearly remember thinking that I would be calling the Hospice any day, and this was likely the beginning of the end. I was wrong, Dotty came back.

This time will be different for sure. Dotty has not been able to walk for some time now, and we have been using the wheelchair to get her to and from the car, etc.

May 7, 2012

Could Deep Brain Stimulation be a Treatment for Alzheimer's Disease

For the study, surgeons implanted a tiny electrode able to deliver a low-grade electrical pulse close to the fornix, a key nerve tract in brain memory circuits.

Alzheimer's Reading Room

Gwenn Smith
This is an interesting Phase 1 study that is designed to establish safety.

The current study came about almost by accident. Deep Brain Stimulation (DBS) was being used to treat an obese man. Unexpectedly, the man had a significant increase in memory.

DBS is accomplished by what could best be described as a pacemaker for the brain.

It is our understanding that the Phase 2 clinical trials will take place at the University of Toronto, Hopkins and additional sites in the United States. We will be on the lookout for the clinical trial filing, when recruiting of patients will start, and the eligibility requirements.

We will let you know.

Online Alzheimer's Support, and Dotty Update

Don't get me wrong. We are not giving up. I have no idea what tomorrow will bring.

The Alzheimer's Reading Room is a virtual place, an online place. But where would I be right now without it?

You read a lot about how kids these days communicate via text and online. Some worry that the lack of personal, face to face communication, is a bad thing. Maybe, maybe not.

I can say this with complete confidence. The emails and comments I received today, when I wrote about Dotty here in the virtual world, mean as much to me as face to face communication. I feel empowered, energized, and I know I am not alone.

The Alzheimer's Reading Room is a virtual place, an online place. Where would I be right now without it?