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.

Setting Goals December 30, 2014

When folks start talking about new year's resolutions, in my head I go "Been there, done that" my life is just the same, year in and year out. What goals do I need to set?

But last night my grandson told me a story that merits a bit of mindfulness--I asked after his other grandparents who are a few years older than I. "They just came back from Hawaii where they have a time share," he reported.

"Great," I answered, "they have a whole group of friends thay bought the time share with many years ago."

"But they went alone this time bcause all of thier friends have died." 

He said it so matter-of-factly. I was surprised. "Isn't that upsetting to you?" I asked.

"You know Grandma, they all smoked and drank and so they got sick and died. My Nana and Pop_Pop don't do those things. They eat right, Pop-Pop doesn't hear very well, but otherwise they're fine. They miss their friends, though."

So I realize it is good to take stock of myself at the end of the year, be mindful of what I do, proud of my accomplishments in order to be able to look forward to a year of the same--

Another year like this

one will suit me just fine.

Learning to Dance in the Rain December 20, 2014

As the darkest day of the year approaches, as the cold increases even here in sunny Arizona, I find it tempting to curl up with a good book and wait for the storm to pass. 

Emotionally as we caregivers to loved ones who have Alzheimer's disease or other progressive, debilitating diseases watch our husbands, wives or parents decline, we, too, seem to be waiting for the storm to pass. We imagine what our lives will be like once this caregiving is finished, while, at the same time we dread the loss of the loved one we cherish.

I have been waiting for the storm to pass for several years now, ever since my husband's personality changed and he became angry and aggressive and has to live away from the lovely, handicap accessible home we built for him to live out his final years.

What keeps you from moving forward in life? What storm are you waiting to see pass before you move on?

As I see each skill my husband loses, I mourn and I wait. What will he forget next? Will his moments of lucidity return? Will he recognize me when I visit today as he did yesterday? Or will he turn from me and follow a caregiver into another room and sit contentedly among the other television viewers on the couch?

But now I also see that my husband is lovingly cared for in a small intimate environment and that his life is more stable. I also am beginning to see that life is not in waiting for the storm to pass but in learning to dance in the rain.

In the Alzheimer's Association Caregiver Support group I facilitate with my son Steve by my side, we have a cadre of eight members who have attended the group for more than two years. Others come and go as they feel the need, Slowly during this time, bonds have formed between individual members of this group and certainly the comraderie we find in supporting each other has become very important to all of us. We look forward to our twice monthly meetings and this time we did something different.

A man attended our group for a while whose wife has Alzheimer's disease. We suggested avenues of assistance for him; we distributed pamphlets, we shared our experiences. He brought the menus for his pizza parlor and invited us to visit his establishment, two miles from our meeting place. 

Yesterday, seven of us went, after our meeting, for pizza and other delicious Italian foods. He was there, as was his wife, whom he cannot leave alone at home. Although he is waiting for approval from the state to place his wife in a residential facility, we are learning to walk together, in rain or shine.

Luxury December 15,2014

What is luxury to you? Has the idea of luxury remained constant in your life? Do you still yearn for, or highly value, the things you have acquired over the years?

Do you take for granted what you thought of as a luxury in your childhood or young adulthood?

As a child, I thought luxury would be having my own room, a lovely white-gowned wedding, my own apartment   with my handsome husband, little children running around happily, peace in the world. I took for granted my college education, my ability to live in the dorm away from home, the diversity of people whom I was privileged to meet and to interact with. Luxury in college was a hot plate to prepare my own coffee, a kosher salami hanging from the fire escape sent to me by my grandfather, and most of all my English racer bicycle with a college license plate.

I took for granted the house in the suburbs, I was happy with my hand-me-down car when my husband bought himself a new one and luxury for me became time alone- to read, to think, to sit in the sun at the beach. Not that I didn't also shop for and love my designer handbag, my soft leather gloves and my cashmere sweater. From wishing for peace in the world, I became active in PTA, taught first graders, joined the Women's Political movement, luxury forgotten in the middle of life, rearing teenagers and continuing my education.

Luxury in my 50's became travel to exotic destiinations about which I had studied or read, guarded jealously by saving up my vacation time. My children were grown and on their own, I met my second husband and we enjoyed the freedom to live our lives the way we chose to do so.

Now that all of those goals have been attempted, achieved or discarded, I luxuriate in a sinfully soft bath towel after a shower in my bathroom when it is filled with sunlight. I luxuriate in the beauty of a sunrise as I walk early in the morning, or of a multi-hued sunset as I sip a glass of Prosecco--alone-- on my lovely patio. I observe the crowds pushing and shoving to purchase gifts for the holidays and I rejoice that I am now beyond that. I will devote my energies to working toward helping caregivers of Alzheimer diseased loved ones, to meeting new people who are on my wavelength and to enjoying my children and my grandchildren.