Thursday, March 29, 2012

Thursday’s blog

Jane Brody writes in her column Personal Health in Tuesday’s NY Times Science section—I know I didn’t read it soon enough to get it in here for Tuesday—that social connections lead to longer life. This is not new information; social scientists and psychologists have documented isolation as shortening the life of widowers, for example, for many years.

What is interesting is the context in which Jane Brody writes now that her husband of 44 years has been dead for two years. She notes that during the first year, her family, extended family and longtime friends kept her busy by including her in their events and that she participated gratefully, but still found herself feeling alone, among the group. Now in the second year, the invitations are fewer as the others have gone on with their lives and expect her to go on with hers as well. Since she mastered the house care and financial chores that were her husband’s during the first year of bereavement, why was she still feeling so sad and so alone, she wonders, even among people whom she loves, and who love her?

She speaks of the need to recompose her life, although those are Mary Catherine Bateson’s words, to find new causes to believe in, people to help, new connections to forge. She notes that, using hindsight, it seems that people living nearer to their extended families grew older with more purpose and family connections. I don’t quite agree with her nostalgia for “the olden days”when generations of families lived together for economic reasons. What I see is that elders died then as the ones whose families live with them do now, still taking care of others, babysitting, cooking, cleaning, never having time for themselves or for their own interests.

 Caregivers who no longer have the 36 hour day to negotiate, feel the loss of companionship before their loved one dies. Luckily I belong to a caring support group in which several of our loved ones reside in memory care units; one of us is now a widow who feels supported and cares for us. Still I struggle with bouts of sadness and loneliness, regret for the turn my life has taken as well as ongoing concern and daily visits with my loved one who seems to be more accepting of his condition at this point than I.

Tuesday's news --no science today 3/27/2012

I just completed reading The Marriage Plot by Jeffrey Eugenides in which the female 1980’s protagonist reduces her life and her ambitions to try to please her intellectually gifted, although personally flawed bipolar disordered boyfriend. The author describes her as entering the forest of his life and states that “there comes a moment, when you get lost in the woods, when the woods begin to feel like home.”

As a caregiver to someone who is ill or disabled or to a child who has developmental difficulties, this sentence is illuminating and descriptive. Having never pictured my existence these past six years in this way, I nevertheless understand anew my myopia, my denial of the gravity of my husband’s illness and my determination to keep him as healthy and as independent as possible for as long as I could. As a child therapist, I admired the families of autistic spectrum disordered children, ADD kids, physically challenged children who devoted their entire lives to the wellbeing of their child.

When the physicians at the psychiatric hospital convinced me that my husband’s safety and mine could not be assured if he remained at home, a path opened for me to see a way out of this particular forest. I have to come to grips with my failure to succeed in the impossible goal I had set, I have to accept the grim reality of my husband’s constant and continual loss of skills, cognitive, self-care and now immediate short term memory skills, and I have to understand that although he is no longer violent or aggressive, he is so dependent and in need of such constant attention that I still cannot take him home where both he and I want him to be.

100 words for Sunday, March 25, 2012

Support group meeting at Arbor Rose is stimulating, invigorating and comforting. I don’t disturb Bob as he is peacefully watching television. Driving home, I feel sad and lonely. I have no plans for this evening; Friday night services offer little appeal as I attended last week, alone in a crowd. I phone my daughter; they are invited to her former in-laws for dinner. Shall I search online for a movie to attend? Surely I can. While choosing between “Salmon Fishing in the Yemen” and “Footnote,” Martha rings on Skype, wanting to see a film. Settling on “Footnote,” I feel better.

It was an interesting Israeli film concerning the relationship between father and son; at least it didn't concern Alzheimer's disease. When I went to see the Iranian film, "The Separation" I was not expecting to see the grandfather incapacitated by this disease that I deal with everyday.In that film, the conflict existed between the couple because the husband did not realize how much effort his wife expended to care for his father. Although they were secular Muslims, the husband expected his wife to perform without any thanks, praise or even acknowledgement of her efforts. I understand both sides; it is difficult to change long established customs and beliefs and even more difficult to recognize the severe disabilities of one's parent.
I spoke with the families of residents at Sunrise Senior Living in Scottsdale this week about the problems of visitation and taking their loved ones out of the residence for an outing; this afternoon I will address questions about normal aging with the Tempe chapter of the Jewish War Veterans. Visit my website www.phylliswpalm.com for complete address and times of my book presentation events.

Tuesday's Science News March 20, 2012

Today's news comes from About.comAlzheimer's/ Dementia site, which lists the names of celebrities with Alzheimer's disease.How many do you recognize? Did you know they had Alzheimer's disease?Joe Adcock, baseball player, Mabel Albertson, actor, Dana Andrews, actor, Rudolph Bing, opera impressario, James Brooks, artist, Charles Bronson, actor, film director, Abe Burrows, author, Carroll Campbell, former Republican senator, Joyce Chen, chef, Perry Como, singer and entertainer, Aaron Coepland, composer, Willem DeKooning, artist, Thomas Dorsey,singer,Tom Fears, professional football player and coach, Louis Feraud, fashion designer, Arlene Francis, actor, Barry Goldwater, Republican senator from Arizona. Those are only the ones from the first seven letters of the alphabet and only updated in 2006!

Another drug is now showing signs of slowing neurological damage and improving brain damage in mice. The drug, called EpoD, joins bexarotene, also a well-known cancer fighting drug. There is now even more hope to be able to treat folks with early-stage Alzheimer's disease. Meanwhile, antioxidants like vitamin e and vitamin c have been shown to be ineffective for improving or maintaining memory function. We who are children of Alzheimer's diseased parents just have to wait and see, exercise, eat right, reduce stress and in my humble opinion, do whatever we do in moderation, no megadoses of any one preventive, no extreme actions.

100 words for Sunday, March 18, 2012

March in Mesa, Arizona is yellow with new small flowers spiking up on low bushes as well as on the fragile ends of green Palo Verde tree branches. Some orange blooms appear and white larger flowers close to the ground. Only weeds poke from the soil; the flowers appear on well-established plants, seeking the sun before the dry heat arrives. These gentle touches of color add to the voluminous red of the bougainvillea that has been blooming riotously all winter. Even the mountainsides host tiny green moss-looking clusters which brighten the desert landscape and record the passing of the seasons.
This week marks the first anniversary of my husband Bob's entry into residential care, a year that I have been living alone in this lovely, handicap-accessible house built for him to spend the last years of his life comfortably and happily, I thought, watering his plants and puttering in his garage. One day this week, Bob greeted me with the familiar sentence "Let's get out of here." His aide said he'd been standing at the door for hours, so I asked for his glasses and his hat, and off we went. "I'll go anywhere you'd like," Bob said. We went to Wal-Mart, he ate a chicken sandwich and drank a Coke and looked at the tools until dinnertime.
Friday, when my son Steve and I visited after the support group meeting, Bob was so engrossed in wheeling another mobile resident in a wheelchair and awaiting his turn for a ride, he barely greeted us and continued on his way around the perimeter of the space. A care worker was completely engaged in the activity with the two men. Steve and I left. No need for us to stay.What a difference a day makes--I think I've heard that sentence before!And such an extreme change in disease progression from the fearful angry man we knew last year.

Thursday, March 15, 2012 Understanding End of Life Issues

My favorite www.nytimes.com/newoldage blog is well worth a visit. Tuesday’s post spoke about the frequency of families not to adhere to the recommendations of physicians who tell them there is slight chance that an operation or another intervention will succeed when a close relative is terminally ill. Whereas one study showed that families understood what the physician said, which could have been the problem, However, the families interpreted positive prognoses correctly.
When the outcome was negative, such as " only a 5% chance of survival" many families put their loved ones through invasive procedures anyway. They just didn’t believe or didn’t accept the negative outcome statements. They often gave reasons such as an exceptional quality of their loved one which would allow her to triumph. They were skeptical of physician’s prognoses, but only of the negative tidings. Such biases may have unhappy consequences for the loved ones in the ICUif the families insist on keeping them alive on life support.

We have experienced our first death in the new Memory Care unit. The hospice nurse was called in and the patient was comfortable, surrounded by his family and the caring staff. We will offer whatever support we can as the caregiver support group, but it makes us all wonder about our own loved ones. We are accustomed to slow decreases in skills and in physical abilities but the end of life has come swiftly to the three men who have died recently. For less than a week, they each were confined to bed having problems breathing or swallowing. None of us expected this outcome. Now we will all be better prepared and of course still worried.

Tuesday's Science News March 13, 2012

The science article I have chosen for today is titled Things Adult Medicine Could Learn from Pediatrics. It is a topic that has been near and dear to my  husband's heart all his adult life. When he saw the small size of needles which were first manufactured when his children were small, and the smaller test tubes of blood needed, he began to question why small needles and smaller amounts of blood couldn't be used for adults as well. He did succeed after his diagnosis with diabetes, that smaller needles be used for him and he was pleased. Now finally, everyone may be able to benefit from smaller needles, which hurt less. The idea that adults have "to tough it out" is finally waning.
I proudly have a new mantra which I repeat for 40 minutes every morning. I am back to walking two miles without knee pain! So join me now that spring is here and the weather is mild. Buns in, abs back, shoulders down and head in neutral. Repeat often, interspersed with sips of water, while wearing sun screen and a hat to guard against skin cancer.

100 Words for Sunday, March 11, 2012

I have a new dilemma. Experience has now shown that coconut oil can moderate memory loss due to dementia; essential oils can pass the blood-brain barrier and perhaps slow the progress of diseases such as Parkinson’s or Alzheimer’s. In 2005, 2006, 2007 or possibly even in 2008 or 2009, I would have jumped at any compound that had any chance of affecting the progress of this disease. But now? I merely wish that my husband declines peacefully. I have ceased fighting. My support group and his psychiatrist agree this is the correct approach to take. I wish I were sure.

My suggestion to you, my fellow caregivers or relatives of folks with these dreaded diseases?? When I raised this topic in my support group on Friday, my peers whose husbands are still living at home shared they had tried these remedies and had achieved little or no lasting success. No one knows how the doctor who suggested this initially has fared with the patient who initially did so well with coconut oil. My peers whose husbands are currently residing in nursing homes( oops care facilities) are letting nature take its course, providing comfort care as usual, medication for diabetes, heart conditions and moderation of anxiety and psychosis and making sure our loved ones are treated with warmth and dignity.

What raised my anxiety level when I'm often confident that the decisions I research are valid and worth a try? I still see moments of lucidity when I visit my husband and I so wish to see him well, that I dream of something that will release the core of Bob that I feel some days is "still in there somewhere."

Steve and I took Bob out of Arbor Rose for an hour Thursday. This was his first outing since he moved in on February first.We drove through  MacD's to get a chocolate shake and french fries for him ( a mid-afternnon snack), drove to the park, sat on a bench near the lake as he, head bent, ate and drank. When he had finished, he raised his head and said clearly, "There are plenty of ducks out there." True enough. Then he said, "Let's walk," and we did until he looked up again and said,"That's too far," and we returned to the car and back to Arbor Rose.

Invitations

Seldom do I use this blog to share the process of getting my new book in front of the public. Today I will make an exception. Arbor Rose Senior Care has purchased 20 books and will distribute them to families of prospective residents. On Sunday, March 26th at 1:00 p.m.,  I have been invited to speak about Alzheimer's disease to the group of Jewish War Veterans that meets at Temple Emanuel of Tempe. There will be a book release party at Fountains of the Sun Active Adult Community in Mesa on April 3rd at 1:00p.m. and I will meet with the group of seniors at the Chandler JCC on April 17th at 10:30a.m.
The public is invited to attend  any of these meetings; if you will be in the neighborhood on any of these dates please come to join in the discussion. I will read excerpts from the book, the audience will be invited to share their stories and we will have a question and answer time. Refreshments will be served and I will stay after the presentations to sign books for anyone who wishes an autographed copy.
Check out the reviews of the book, Put That Knife Away-Alzheimer's, Marriage and My Transformation From Wife to Caregiver on amazon.com and visit my new website www.phylliswpalm.com where you may purchase a copy of the book if you would like. I will also bring books to the venues cited above.You will also find me on www.facebook.com . Each of these technological 21st century feats has been developed by my daughter Linda, who also designed the cover of the book. Thank you, Linda!

Tuesday's Science News-Inactivity

I have chosen the article from Tuesday's NY Times Science section titled "To avoid the pitfalls of inactivity, just walk away," because I use the same sentence every day. I substitute many words for "inactivity" however. When dealing with challenging behaviors with a demented spouse, walking away, but not too far away, is usually better than confrontation. When I have a knotty problem to solve, walking will help me sort it out.
But today, we are actually speaking about less physical activity. Healthy adults, on average, walk 10,000 steps a day. Healthy adults do not get blood sugar spikes and swings in blood sugar after eating a meal, as do folks with type two diabetes or heart disease.The study required young healthy adults to measure their steps, keep a food journal for three days, then cut their walking in half for the next three days keeping food intake the same. When their blood sugar levels were monitored, they, too, had blood sugar spikes after eating. When they resumed walking, their results went back to normal.
The lesson learned is that walking keeps us healthy, even if it's walking around our apartment in bad weather, or in a big box store, taking the steps instead of the elevator, parking the car further from the entrance in the lot. Formal exercise is fine, but "the evidence is clear that you do need to move."

100 Words for Sunday, March 4, 2012

The man is bent so much he seems to have shrunk by several inches this month. His head hangs low, I doubt it is to avoid a fall; it takes too much effort to hold his head up. “You’re Phyllis,” he said, surprised one day this week when he lifted his head to look at me. “You’re cute,” he added. On another visit, he said, “You’ve gotten so tall.” I explained I was standing up straight. “Stand up with me,” I said, “Or I can stoop to be equal to you,” I offered. “Stoop down and walk,” he answered solemnly.

I am generally pleased with the new memory care unit; my husband wanders around, but generally there is someone near him with whom he is willing to interact. When there are lax times during which sufficient caregivers are not present, the ratio is soon rectified. Two new admissions bring the population to twelve of its eventual seventeen. Unfortunately there are now several residents of the unit who are wheelchair-bound and sleep most of the day. Some remain for the most part in their rooms, others sleep in the comfortable leather recliners in the main room; the unit never feels crowded, but it is not lively. Two women often spend their time in the Day Club, but Bob does not.

Bob is always glad to see me, but I am no longer as important to his life as  I once was. He recognizes me, calls me by name and tells me what he needs. He loves back rubs and reciprocates too. Often, while I am visiting, he falls asleep next to me while sitting in his chair. He is relaxed and content which makes me feel like Marlo Thomas.