Thinking Out Loud February 26, 2015

Do you ever talk to yourself out loud?

Back before Bluetooth, when I heard a person on the street, on the bus or in the subway speaking out loud to herself, I kind of assumed she was mentally challenged and was communicating with auditory hallucinations only she heard in her head.

Now of course we overhear all sorts of one-sided conversations folks are having with an unseen, but heard voice on the telephone. Perhaps a bit less so today, as the voice has been superceded by the text message. The talk can be more private now.

Absolutely, we all have private conversations with ourselves. The cognitive psychologists have coined a name for it . "Self-talk" is a technique to help us change bad habits or to stop obsessing about something we cannot change. We talk to ourselves  to remind ourselves of tasks, to chide ourselves for missteps in our relationships with others, to review presentations or conversations we will have with classes, bosses or even to make up a story I will tell to the police officer in the car following me down the highway if he turns on those lights and stops my speeding car.

I was busy making up one of those stories yesterday as I drove at 75 mph down the highway. But the car which passed me had no complaint.

As a writer, I have ample opportunity to express my thoughts and feelings, but always, even as I write this blog, I have a reader in mind. I formulate my thoughts to make myself understood by you.

As a caregiver for a husband who has Alzheimer's disease, I now have the possibility to speak aloud in public to an audience of one who most likely has no idea about what I am thinking out loud. He benefits from hearing my voice, perhaps looking at my expressions, but he definitely likes walking next to me holding my hand or sitting with me on the glider as I speak.

I tell him about the issues raging inside me, trying out solutions to various problems, patting myself on the back for successes and planning future writing, thoughts and actions. A silent sounding board, but quite satisfying to me to be able to hear myself speak with few if any interruptions.

Appreciate Life February 20, 2015

Each day as I sit with my less and less communicative spouse at his assisted living home, I gain an appreciation for the connections I have with family and friends. Alzheimer's disease is such a devastating end of life that sometimes lingers on and on. Watching the plaques and tangles take control of more and more of my husband's brain makes me realize how much of the connection between us depends on our self-perception. We love someone because we attach ourselves to an idea we have of that other person. 

Less and less of that connection depends on the actual behavior of the person him or herself once we decide to love. Yes of course the physical attraction comes first, but even that is a decision we make ourselves about the type of person we will let ourselves be attracted to.I also see that one indiividual in a relationship decides not to love the other anymore again for reasons peculiar to that person. Thereis nothing   the no-longer-loved person can do to rescue the relationship.

I understand better the idea of pre-arranged marriages where the family participates in choosing a reasonably matched pair who develop a partnership between them over time. I know that idea is passe now, because the sexes were not treated equally in the choice or in the marriages that were arranged. Women had defined roles they were expected to maintain which were subordinate to their husbands. That won't work anymore. Each person has set ideas about the person they decide to love.

The second marriages I have observed seem to fare better. The pair chooses more wisely perhaps, the strain of finances and of children is decreased. The healthy spouse remains devoted to a more and more absent partner if Alzheimer's disease or Parkinson's disease, ALS or cancer enter their lives.

Just as "it takes a village" to raise a child, it is of umost importance for our lives to develop new friendships, maintain alliances and deepen our connections with our friends and family.

We Demand Hopefulness- Or We Don't Listen February 13, 2015

The news media is full of tragic stories every day-on some channels all day and night, we hear of death by accident, illness or foul play. But when it comes to writing about Alzheimer's disease, a degenerative, neurological illness that has no cure, we want hopeful, happy stories with positive outcomes.

If I write about my expereinces as a caregiver or about my care receiver's events,if they are not hopeful and positive which by definition the stories cannot be, no one wants to listen.Not no one actually. People with experiences such as mine want to hear they are not alone. They feel comforted  by knowing others have dealt with the problems they are facing or have faced. But it's the general public who don't want to hear about the trials of caregivers and care receivers as we speak out asking for more funding for research and more support of our current loved ones who have Alzheimer's disease or other dementias. They also don't want to hear about planning for their older years or those of their parents.

WHY?

We don't want to hear abut the killings by Boko Haram in Africa either, or about anti-Semitism in France or in the rest of Europe. Yet we respond with admirable anger over the killing of three Muslim students, African-Americans bullied by police or local vigilantes.

BECAUSE we feel we can DO something about these last issues. We can exert some public outrage, protest and have a hope that some change can be accomplished.

So far, the world is unable to stop terror attacks before they happen and we are unable to cure Alzheimer's disease. We feel frustrated, sad and impotent.

We worry we will be next in all of these cases. Some people avoid travel, thinking they will be spared if they stay home. Most of us remain in DENIAL. What we don't pay attention to, what we don't listen to, won't come back and bite us in the rear.

Communication February 1, 2015

I continue to visit my husband daily at his assisted living adult home, where I am sure he is being lovingly and well treated, even though sometimes I do not know if he recognizes me. He has been verbally non-communicative for quite a while, but his eyes would sparkle when he saw me, or he would raise his hands for a hug and I would know I was welcomed and loved.

When my husband tries to communicate verbally, his speech is a repetitive series of sounds which are unintelligible to me-- or to anyone else. But I do sense his mood as he speaks and frequently I feel that his need is to communicate something that is wrong. My husband's awareness of right and wrong has always been acute and he has always been a detail-oriented person. So I don't know what he is referring to, but I am pretty sure it would be a complaint.

 I distract him with pictures from a magazine, lure him outside to play ball, walk with him in the sunshine until all of a sudden he comes out of the reverie and really looks at me and knows who I am. He will grasp my hand more tightly, reminding us both of the strong bond we share without words. Twice this week he has, at those times, uttered a complete understandable sentence. One day as we were sitting in the sunshine he said, "I think I should get up now." Why I will never know, but he stood up and we continued our walk. 

Yesterday when I walked in, I found him sitting alone in the kitchen. I know he likes to sit there when food is being prepared. He watches and gives advice--which everyone knows is pleasant and he is trying to be helpful, as when he pointed to the chops being grilled on the indoor grill when they smelled like they needed to be turned. But yesterday, he sat alone, he would not look at me, but I coaxed him up and he walked into his room. "I will sit for a while" he said clearly. So he sat on his lounge chair and I perched on the corner of his bed. A few minutes later he said clearly, "Would you like to go for a walk?"

We walked, but each time we neared the living room, he stopped, rolled his eyes and said something in  a decidedly disturbed tone, but I didn't figure out why. 

Until another resident's visitor vacated the spot on the leather recliner sofa where Bob has recently sat. He left me, walked over to "his" spot and happily sat down until dinner was served and a worker escorted him to the dining table.

Self Acceptance January 18,2015

As New Year's resolutions begin to fade, I start to think of all the "bad" things I've already done this year. I bought a huge macadamia nut cookie at the food store--it was shining at me at the checkout counter in its Saran-wrap luxury-- and ate it all before I finished putting the rest of my purchases away.

AND I just added a half teaspoon of "real" sugar to my Sunday morning coffee which prompted me to write this blog entry.

Last week was a challenging one for me, but it also had such goodness I have been heartened rather than its opposite. My friends know I am always willing to believe in people, some call me gullible I admit. I trust easily , but I get SO disappointed when my trust is misplaced and I get "taken."

I lose my self-respect, I doubt my decision-making skills, I cringe and want to curl up with a good mystery novel and hope the problem goes away, or that my emotional involvement dissipates to the level at which my head can function to extricate me from the ensuing mess.

This pattern can and does happen to many of us. We set goals, we slide back a bit which we accept until something else in our lives disappoints us and we slide into dysfunction. Whether we choose alcohol or pills or food to soothe our bruised selves, whether we hide from life and disconnect from friends or act out aggressively in this less than balanced state, we need to recognize what is happening inside ourselves.

Awareness has to come first.Reaching out to family and friends comes next. "Fessing up" and letting your world know what has happened isn't easy. It feels like admitting to failure, to naiveté at the least.

My son read the offending letter I received, my friend suggested an attorney who phoned me directly and even emailed me at 8:05 on a Friday evening and offered to read the material without charge!!

Don't let the winter doldrums get you down for long! 

Bess Myerson Dies at 90 from Alzheimer's Disease January 11, 2015

Bess Myerson was Miss America in 1945, when that title was an important one at the end of the Second World War. As Miss America, she was set up for a series of appearnces in many cities across the country. However, instead of welcoming the New York extremely talented beauty, she was discriminated against because she was Jewish. She was not admitted to the country clubs and was not permitted to stay in the pageant-ordered hotels! Eventually she just went home.

She became an advocate; she presented the promise of the Miss America pageant and she became  outspoken about the racism and the bigotry that existed then and sadly, to some extent, exists still today. She had the courage to speak out and the pride in her heritage. She became the Consumer Affairs advocate for the city of New York and served under two mayors, Mayor Lindsay and Mayor Ed Koch. She also becme a television personality, she was on three shows. The most famous one was What's My Line?

She even declared to run for a Senate seat in New York in 1980, but was sidelined with cancer

In her personal life she was not lucky; she eventully was charged with bribery when she hired the daughter of a judge who was hearing a divorce case involving her married lover. She was acquitted, but she lost her job as commissioner.

After 1988, she moved from New York to be with her daughter. She developed Alzheimer's disease and died on December 14, 2014 three weeks before the press heard about her death.

Perseverance January 4, 2015

The dictionary defines the word as continued steady belief or practice regardless of difficulty. Its synonym is persistence.

Those who know me will agree that I keep on going, trying to find a solution to problems regardless of difficulty. I make attempts to learn something new, to write something better, to help others where I can, to advocate for other caregivers. 

I received a most welcome gift this week, however. A woman who had recently met me, then read my book, Put That Knife Away, wrote to me that I had persevered. My accomplishment, she added, is helping her to persevere through the newly diagnosed dementia of her husband.

Using the past tense of the word freed me somehow. She was correct I now realize; my struggles with caregiving have diminished. My husband is no longer angry; I have moved him to a quiet peaceful home instead of the larger facility where he had been living for the past three years. I can relax.

My caregiving is not over; I visit regularly, bringing magazines or his winter jacket. I witness his contentment and I am relieved that his needs are being met so well. I can now persevere in writing the sequel which will be called I Want to Go Home, a book about the various residential avenues my husband and I have explored and those that have been used by the members of my support group.