Whipped Cream on French Fries

I have returned, much rested and quietly content. When I greeted my husband Bob today after a three week absence, I hugged him from the back as he was not facing me when I walked on to his unit at the Memory Care Center. He exclaimed,"Is it Phyllis?" As he turned around, he grinned and added "Is it really you?" I smiled a reasurance as he spotted Steve and said, "It's so good to have both of you at the same time. Can we get out of here now? right now?"
Then he sat in the back seat of the car so he could see us both at the same time. He was happy to "be in civilization," even if only to the food store and to "get something to eat." Ordering a snack at McD's, you guessed it, he nibbled on his french fries which he dipped into the whipped cream delightedly, but he was "full" rather quickly and happy to sit and hold my hand.
My apologies for my abrupt departure. I didn't know I would have no internet access during my vacation.

Tuesday's Sciene Times July 31, 2012

Two articles in Sunday’s NY Times are of interest to us as caregivers of all ages; they each discuss the reality of growing older and of dying, albeit from differing perspectives. One is part of an ongoing series in which responses to a selected letter to the editor are published along with a response from the writer and inserted weekly into the Review section of the paper. The other is a regular column in the Styles section by Bruce Feiler. Sunday’s column was titled The Father is Child of the Man, with the subtitle “Parallels between caring upward and caring downward on the family tree,” which more accurately summarizes the article.

Mr. Feiler’s mother has a few adult children who all live in different states from her. She had been caring for her husband who has Parkinson’s disease for quite a while, including through  back surgery, without, it seems, assistance from her children, until she fell and dislocated her shoulder. The children “huddled” on the telephone and Mr. Feiler was chosen to travel to Georgia where their parents live. Feiler found that his parents benefitted from his help in reviewing their expenditures as well as in finding activities that were entertaining, especially computer or reading to help keep his father’s mind active. He also learned that the person needing care often lashes out at the caregiver and that when the loved one has a distorted view of the world it is better not to confront, but rather to agree without causing more discontent.

The letter to the editor written by Dr. Janis Abrahms Spring concerns both the medical profession and adult children’s unwillingness to discuss end-of-life issues, using the example of asking a dying man if he would like a feeding tube, without adding the sentence “Without the tube, you will die.” Dr. Spring suggests many valuable reasons for this end-of-life discussion including forgiveness and reconciliation between the generations, citing that many adult children end up caring for parents for whom they have ambivalent or negative feelings.

Both articles reveal the need for continued conversations throughout life between the life partners and between generations, switching when the children become adults to sharing concerns the parents have about their own lives instead of only listening and offering advice when their children phone to ask for help. Did Mr. Feiler’s mother need help with caring for her husband before she fell and dislocated her shoulder? Do initial discussions about feeding tubes belong at the bedside of someone who is terminally ill?

Adult children need to be aware of the parents’ needs as they age, parents need to share their concerns with their children. What keeps us from sharing? Where do we lose that trust, that intimacy that prevents these important discussions?

100 Words for Sunday, July 29, 2012

As a child, when my mother was called to school for a conference, we both waited with trepidation for the outcome. What did I do wrong? we wondered. As a parent, I was pleased the teachers always began with positive statements. Now once again I am called, this time to the memory care center. Bob is eating less, he paces and he has become more agitated. Because he is using foul language and he will not cooperate with the nurse who tries to measure his blood pressure, his medications are increased. They want me to understand that he is “failing.”

I see that the blond nurse, the one who Bob was willing to trade me in for, merely a few weeks ago, is not smiling and not greeting me with hugs; she has serious information to impart and I feel protective, just as I did at those parent-teacher conferences, ready to make excuses in my head for my children's shortcomings. Bob may be agitated because some residents are coming into his room uninvited. He may not like the food he is served as he eats when we take him to The Village Inn.
But really, he eats less when we are out also; he doesn't eat or ask for snacks as often as he did. Am I deluding myself that he is "holding his own," that he is "doing as well as can be expected" as I say to friends who ask? Does my husband "put on" good behavior when Steve or I visit, because he knows we will take him out for a while?How do I know? Does it matter? We provide pleaseant moments for Bob in an otherwise blank existence. Tomorrow is is 83rd birthday. Today we will go to an Italian restaurant and see if he'll eat pastafagioli or spaghetti marinara which he always like "before."

Wednesday, July 25, 2012 A new food product

Do you know someone with very mild or mild Alzheimer's disease symptoms? Here's a food product that that has worked to improve memory in this group. Offer this message to anyone you know in this category. The  problem is, of course, that most family members are so in denial of this dreaded disease that they don't or won't recognize mild symptoms as a disease and by the time they do, the food product made by Dannon which is owned by Nestle, will no longer be effective. That's what this blog is for. Be prepared better than I was when Alzheimer's disease descended upon my husband.
July 23, 2012 (Vancouver, British Columbia) — Administration of a medical food designed to improve synaptic dysfunction is associated with continuous memory improvement in patients with mild Alzheimer's disease (AD), new research shows.
Presented here at the Alzheimer's Association International Conference (AAIC) 2012, results from an open-label extension (OLE) trial of a medical nutrition product (Souvenaid, Nutricia/Danone) showed that memory performance continued to improve in drug-naïve patients with mild AD for up to 48 weeks.
These latest OLE results immediately follow those of the double-blind, randomized controlled Souvenir II study, published in the July issue of the Journal of Alzheimer's Disease, which showed significant improvement in memory performance compared with placebo over 24 weeks.
As presented by Philip Scheltens, MD, PhD, professor of cognitive neurology and director of the Alzheimer Center at the VU University Medical Center in Amsterdam, the Netherlands, the results from the 24-week OLE study "were exactly what we hoped for."

Dr. Philip Scheltens

At 48 weeks, memory of participants in the group randomly assigned to receive active treatment and who continued to receive Souvenaid in the OLE part of the study improved even further.
"There was no ceiling effect," he said.
Furthermore, study participants who were in the placebo group in the randomized controlled period of the trial and who were switched to the active treatment in the OLE study also experienced significant memory improvement.
"The bottom line is that we have now conducted 2 large studies with this medical food that aims to restore the function of synapses in mild to very mild Alzheimer's disease and have proven that it improves memory," Dr. Scheltens told Medscape Medical News.
He added that the findings also show that Souvenaid is "very safe and well tolerated" and confirm the results of the Souvenir I trial, the very first proof of concept study, which was published in the journal Alzheimer's & Dementia and reported byMedscape Medical News at that time

Science news Tuesday, July 24,2012

This is scary news. How many caregivers have planned for their own long term care?

Los Angeles, CA, July 21, 2012 --(PR.com)-- Slightly over one in four nursing home claims paid for by long term care insurance are the result of Alzheimer’s disease according to a report issued today.

According to the Alzheimer’s Association some 5.4 million Americans are living with the disease and one in eight older Americans has the disease. "Americans will pay an estimated $200 billion for care received by individuals with Alzheimer’s," explains Jesse Slome, executive director of the American Association for Long-Term Care Insurance. “Insurance is increasingly being used to pay for care and Alzheimer’s is the top cause of claims for those in nursing homes. Last year long term care insurers paid out $6.6 billion in claims to over 200,000 Americans.”

Data from the Alzheimer’s Association notes that Medicare and Medicaid pay for about $140 billion of the costs and project that costs are expected to grow to a projected $1.1 trillion in today’s dollars by 2050. Their website notes the dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending.

“The rate of spending is unsustainable,” declares Slome. “We explain to individuals that if they are concerned about the future ability of federal and state government programs to pay for costs, that they need to do some personal planning, including look at long term care insurance as a way to avoid dependence on whatever meager programs will exist at the point in time they need care.”

Alzheimer’s ranks as the sixth-leading cause of death in the United States. It is the only condition among the top-10 killers that can not be prevented, cured or even slowed.

“Frankly, I believe the future is scary in terms of how a nation will deal with the tens of millions of aging Baby Boomers who will live into their 80s and 90s the age when Alzheimer’s is most likely to occur,” Slome adds. “Most individuals have not given this any thought let alone done any preparation. It is the equivalent of failing to arrive at retirement age without a plan in place, you place your future into the hands of others.”

According to the Association’s national cost of care study, one year in a nursing home costs $85,045 for a private room and $76,285 for a semi-private room. “That’s the cost today but it’s only going to grow each year,” Slome concludes. “A failure to plan is definitely a plan for failure.”

For additional information on long term care insurance consult with your local long term care insurance specialist or to find one serving your state call the Association at (818) 597-3227 or visit their website www.aaltci.org for access to a variety of free online consumer information guides

100 Words for Sunday, July 22, 2012 -My Rights

The Caregiver’s Rights from the American Heart Association have circulated for some time, but they bear repeating as it is so hard to remember oneself as we struggle to care for others, whether ill spouses or aging parents or adult children who are okay on their own without parental advice or consent. When do our rights interfere with the rights of others to make their own choices where they can? When can asserting our rights protect us from well-meaning others who seek to control us? Where is the line between caring and apathy, between love and obligation? I struggle daily.

I have the right to take care of myself. This is not an act of selfishness. It will enable me to take better care of others.
I have the right to seek help from others even if my loved one may object.
I have the right to maintain facets of my own life that do not include the person that I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person and I have the right to do some things for myself.
I have the right to feel angry, be depressed and express other difficult emotions, occasionally.
I have the right to reject any attempt by my loved one (either consciously or unconsciously) to manipulate me through guilt, anger or depression.
I have the right to receive consideration, affection, forgiveness and acceptance from my loved one as long as I offer these qualities in return.
I have the right to take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
I have the right to protect my individuality and make a life for myself that will sustain me when my loved one no longer needs my full-time help.
I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

Science News Friday, July 20, 2012

We are always interested in ascertaining what stage of the disease our loved ones are currently in, how long they have been living with the disease and how fast it will progress. Here's some news reported by   Bob DeMarco in the Alzheimer's Reading room.

Timeline of Alzheimer's Disease

The timeline, developed through research led by scientists at Washington University School of Medicine in St. Louis, appears July 11 in The New England Journal of Medicine
The findings taken from studies with people who have a family history of dementia reveal the dramatic timeline of Alzheimer's disease:

• 25 years before severe dementia, beta-amyloid protein levels in the spinal fluid begin to drop, suggesting that amyloid has begun to accumulate in the brain.
• 15 years before severe dementia, beta-amyloid can be detected in the brain. As this does not seem to occur in people without Alzheimer's, it may be the earliest sure sign of the disease.
• 15 years before severe dementia, tau protein begins to accumulate in the spinal fluid. Many researchers believe that tau is more important than amyloid in Alzheimer's disease.
• 15 years before severe dementia, the brain begins to shrink.
• 10 years before severe dementia, brain metabolism slows down.
• 10 years before severe dementia, episodic memory is impaired. Episodic memories are like snapshots or video footage of a person's experience.
• 5 years before severe dementia, cognitive impairment sets in.