Ninth Inning for Outings November 17, 2011

The time for taking Bob out of the assisted living home for an outing is slowly coming to an end. It is now eight months since he entered Sterling House. In the beginning we were afraid to take him out, as he requested, for fear he would not want to return. But that fear seemed to be unfounded; he enjoyed the outing and was content to return to known surroundings. He would say, “This place is familiar,” or “I know where I am,” or “I know you,” to the staff member who opened the door for us on our return.

He was always hungry and wanted to go to a restaurant. No matter what time it was, no matter when or what he had had to eat, he always ordered heuvos rancheros and ate quickly and heartily. No longer. At first, he couldn’t find the eggs hidden under the cheese and only ate the tortilla with the sauce, so we ordered a more simple breakfast meal for him, which he seemed to enjoy. However, waiting for the meal to be served has become difficult for him and he is used to eating whatever he is served.

My son Steve enjoyed outings with Bob to large stores and I took him to his favorite thrift stores, but today, when we were in Home Depot, Bob said, “I don’t want to be here. Let’s get out of here. A half hour ago I would have liked this store, but no more.” He had just finished admiring the hardware aisle, commenting on how much money this store must be worth as well as trying out the wood drill and making a hole in the lumber provided. It is so sad to see that he realizes what he has lost.

Of course I understand his frustration. What reminded him of past accomplishments now is only a reminder of words he cannot find to name the things he sees. Two days ago, we took Bob to the pet store, thinking he would enjoy seeing the puppies, kittens, birds, guinea pigs, hamsters and fish which were on display. “I don’t want to be here,” Bob said while watching through the glass as a group of dogs were being trained by their owners, “Those dogs are being tortured.” As for the kittens, he said, “I don’t want one.” The birds, he said were “a little all right.” The fish he did not attend to at all.

Bob no longer enjoys feeding the ducks at the park. He complains if there are children on scooters, or if there is a fisherman nearby. He eats the stale bread we have brought; he worries about having to use the bathroom and attempted to urinate outdoors. He also worries about finding the car in the parking lot, but he no longer asks me if we have sufficient gasoline. I see how his life is diminished and I begin to miss even his cantankerous self. At least we knew Bob was still “in there” somewhere.

I hate this illness, but I understand where he is coming from. He now thinks we take him to a store only to purchase something. His acquisitiveness is gone; his collecting instinct is no longer functioning. His world has narrowed; he wants to go out of the house for a walk, for an ice cream, for a short outing that does not remove him from his secure zone for a long period of time. I am so sad, yet I am also grateful that my son Steve is willing to share so  many of these experiences with me.

Tuesday November 15,2011 science post

Today's subject is gluten and my information was gathered from an article in The NY Times Sunday Magazine titled HurtAllOver and from a book I just received from Rodale Press called The Gluten Connection by Shari Lieberman. A little background information first.
I ave always been sensitive to milk and then also to milk products. I didn't have a name for it until my mother, when I was already 50 years old, sat next to me in the movie theater and told me I had to "Do something" about my indigestion. There was no longer a doggie to blame anything on! I then tried lactaid milk and pills with no success; I had to stop using any product that contained milk, except sheep's milk, and I was fine.
Twenty years later, I again experienced the same symptoms and worse; I had uncontrollable diarrhea which sometimes occurred as I was walking in the street. Bob was already experiencing memory lapses and becoming very dependent on me, so I self-diagnosed Irritable Bowel Syndrome and to remedy the tension I felt caused my symptoms, I joined a self-help group online for Alzheimer spouses. It didn't help. My doctor recommended fiber supplements which only added to my social inacceptability.
The following year, the gatroenterologist finally suggested I omit gluten from my diet-- no more bread, rolls,cookies, cakes, pasta. I tried that with moderate results. During that year I lost ten pounds which I have kept off. That was a bonus I enjoy, but my problem recurred every so often.
What I am finding out now is that I have to be as careful with products that contain the least amount of gluten--no potato pancakes, unless made with rice flour, no more gefilte fish-it has matzoh meal, no more Chinese food, the soy sauce has wheat as its second ingredient.The book helped me with ingredients to watch forand with restaurants which have gluten-free menus. By the way, even choosing "safe" foods in a restaurant doesn't work as there is "cross-contamination" in a restaurant kitchen unless they have a gluten-free or "alerganfree" policy in which they keep mixing bowls, pots, pans and griddle separate.
So yes, we caregivers are stressed, but don't stop there if you have physical symptoms. Fight for a diagnosis that fixes the problem. It is "not merely" being tired, or older, or psychological.

Power to the people- Saturday, November 12, 2011

I just spent three days learning about community organizing and the importance of people sharing the stories of their lives with each other and by doing so, developing relationships of trust, through which we all become stronger and which enables us to form alliances with each other, especially those of us who have similar issues within our stories, in order to produce some joint action which will bring about change in some public way that is important to accomplish.
Here you have the reason I started this blog; by sharing my experiences as a caregiver to an Alzheimer diseased spouse, I hope to develop relationships with my readers. It is true that no Alzheimer patient's story is exactly replicated, we are all different people; however, our experiences as caregivers is similar enough that we can develop bonds which have the potential of freeing us from the isolation we all experience.So we provide support for each other, in person or technologic-ly. Perhaps hearing or reading about my story will help you in some way to understand this complicated process, get additonal help as needed from trusted resources, but is there more we can do?
My chapter today is about speaking up to the assisted living center where my husband resides. I needed to learn not to furnish the additional care he needs now by myself, but to sit down with the agency leaders and rework the care plan in order to meet Bob's changing needs.

Wednesday, November 9, 2011-Outside the Box

The nurse from Sterling House phoned me yesterday. "Phyllis," she began, "It's straightened out now, but I need you to know..." and she detailed a medication error, a change made by the physician that was not transferred to the med tech, that she caught and fixed. Then she asked, " I heard you were writing a book about your husband's experience. If so, I have a suggestion for a title."
Intrigued, I of course told her about my manuscript. She advised me of several prominent people whom she has met who might promote my book and asked to read it. Finally, she told me her title idea and why she had chosen to share this with me."Never have I seen anyone take the path in this disease that your husband has been taking. His is the most atypical  trajectory I have ever witnessed."
She is referring to several facts. Bob seems to have adjusted to the setting; he knows where his room is and to whom to go for help when he needs it. He goes to Betty who saves crackers and peanut butter for him, to Sandy for bananas or apples. He lets Anna scratch his back at bedtime, he is even going for five minute walks outside the front door with Leslie, the activities director, every afternoon.
But he's not nice. When asked by Betty to help her shred papers, he does do so for a minute, then throws the paper at her, exclaiming, "Why should I do your work?" He sometimes spits out or hides his medications, which I find when I clean his room preiodically.He claims to dislike the people who use walkers or wheelchairs.
He also dresses himself in layers and layers of clothing. He is still "collecting" books from all over the house, claiming they are his, but he is no longer writing his name inside.
Yet, when Steve met us at the Village Inn for lunch on Monday, Bob said, "This is seventh heaven. I have both of you here together."

100 Words for Sunday, November 6, 2011

It is 74 degrees in the house as I dress in jeans and reach for my sweater. It has rained all night after a dust and wind storm that obliterated the mountains from view all day yesterday. Today the sky is a composite of shades of grey, but the world is light; it does not feel oppressive or gloomy as it might in the city. Although the media hyped up the storm and many cars collided, Arizonans love the change, the short respite from the sun and warmth. No need to find a tree to park the car under today.

And by the following afternoon the sun was shining again and the temperature had risen from 55 to 80, with a clear soft breeze.I find it amusing that I respond as an Arizonan, looking for a sweater indoors in weather I would be delighted to see in New York in short sleeves. I also cuddled myself into my comfy chair and caught up on some reading, using the threat of rain as an excuse to remain indoors all evening. I spoke with friends in the city who were out and about before, during and after their snowstorm last weekend. "You know, Phyllis," said Roz, "in the city it's just a bunch of slush. I went to my concert anyhow. I waited for the bus and then walked two blocks."

Everything is a matter of attitude and choice. Whatever decisions we make work for us today, and we don't have to be locked in to the same choices tomorrow, especially for us retirees who don't have to go to work or to school no matter what the conditions are.

Saturday, November 5, 2011

It's been an interesting and busy week. I participated as a co-leader in my new Alzheimer support group. The leader, Alica has now taken a full time job, so I probably will inherit the group; either way it will be interesting. Steven found a very informative newsletter online and sent it to me--www.agingcare.com. There are practical tips on everyday problems and one which is really neat. A GPS in the shoe of an Alzheimer diseased person who wanders!That's much more civil than an implanted chip and easier to have with the person than a bracelet or a pendant.The site allows folks to post a question and receive responses from other readers.
I spent several hours this week re-reading the manuscript of the book I have written which tells the story of my transition to caregiver for my husband as he began to have difficulties which led to his diagnosis of Alzheimer's disease several years ago. I hadn't looked at the manuscript for a few months as I am a bit discouraged by how hard it is to get a book published these days. But it is a good book and now I will devote more time to self-publishing it!
Meanwhile Bob's skills are diminishing further. He is having problems locating the bathroom when he needs to use it. He doesn't seem to be bathing regularly, at least he smells like he hasn't showered or brushed his teeth. His conversational skills are poor, but we hold hands and swing on the glider peacefully. It's important for me that he smell better.
So I contracted with the care manager for more hands-on supervision of daily living skills, of showers twice a week and removing his soiled clothing from the room each night, so he can't use it again until after it has been laundered. I really don't want to move him to a memory care facility where the residents remain in the dayroom together all day unless I try everything else first to keep him at Sterling House, where he knows where his room is and he is familiar with the routine, even when he refuses to participte in it.

Tuesday's science post- a day late

The Science Times article in yesterday's paper featured an article about a scientist, Michael Gazzaniga who studies how the different parts of our brain work. He discovered that the left side of our brains "fills in" information from the facts available to it. "It takes what it has and delivers a coherent tale to conscious awareness." We all have done this-- "overhearing a fragment of gossip for example and filling in the rest with assumptions."
He has found that we all have a storyteller part of our brains that works with the information available to it -- and fills in the rest. He calls that part of our brains "the interpreter."
All of our brains create the illusion of a meaningful script,as well as an illusion of a coherent self! "We furiously reconstruct what happened and why, inserting motives here, intentions there--based on limited, sometimes flawed information." This filling in of information is done subconsciously. In psychotherapy, we help people bring to conscious thought some of the myths they have created which interfere with their life functionning.
But my focus now is on what's happening with our loved ones brains that are limiting available information every day. They still try to construct a coherent narrative. No wonder it sometimes comes out paranoid. If the information is missing, someone must have taken it!!!