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Monday, February 24, 2014

The Concept of Time February 23, 2014

How differently the passing of time feels depending on what I am doing and what I try to avoid as long as possible-like getting the annual paperwork ready for the accountant.

How quckly an hour passes when I am working at the computer and how slowly a half hour moves when I arrive early for a meeting. How long it takes for the traffic light to turn green when I am late for a gym class and how long the class feels when we are exercising with heavy weights!

And when I spend time at the memory care center, I realize my husband has no sense of time whatsoever. His day is marked by his bodily functions, eat, sleep, digest, walk, sit, sleep some more and walk some more. Once in a while my husband has a moment of lucidity as today a careworker tells me he asked her, "Will you watch a movie with me?" 

She responded, "What is the movie about? " He was holding a DVD disc in its cover.
"I don't know," he answered, "That's why I want to watch it."

The Sound of Music was playing at the time, but he paid the tv no attention. Sometimes it seems as if he tunes the whole world out and attends to problems and situations in his head, mumbling about solutions that he is trying to work out.

Just as the careworkers rotate their shifts and the units to which they are asigned, my husband takes my appearances and disappearances in stride. His needs are being met; he feels safe and secure as long as he sees me regularly. He holds my hand as we walk together. He repeats "Let's get out of here" or "I don't like this one bit." If I miss a day, he wanders the halls looking for me, the eternal optimist, loving and trusting that I will return.

This is such a devastating disease, destroying brain cells and the ability to communicate. He hates what is happening to him, but I think it is a misnomer to say he is an Alzheimer "sufferer." From two years before the diagnosis and as long as he could think clearly, he fought to keep his life manageable and productive.He tried to be as independent as possible for as long as he could and now he is content to be cared for by others. We who knew him before, remember him and the time we spent lovingly together, but we also appreciate him now and we still build memories of the time we spend together.

Saturday, February 15, 2014

Anniversaries February 15, 2014

This week marks the beginning of the fourth year that my husband resides in a facility for Alzheimer's disease sufferers.

Why sufferers? Is he suffering? or are we, the folks who love him and remember him as the bright, curious, active scientist, husband, father, grandfather, brother and friend  that he was.

Why did I use the past tense when he is still very much with us? I see him, I hug him, I scratch his back which he actually SAYS he likes, but this bent-over, weak, mumbling, cute fellow who walks around following the staff is so different from the sparkling blue-eyed fun-loving, often serious, but joking man that, when I visit, I enjoy knowing he is being well cared for and I am grateful that his looks and personality encourage good care from the staff, but I remember him in the past tense.

Three years ago this week,my husband was hospitalized in a small psychiatric hospital geared to treat elderly patients for a short while, mainly to validate or change a diagnosis and to medicate the person appropriately so he/she can live in a less restricted setting. I thought then, that he was coming home as when we were finally permitted to visit, his behavior was appropriate, his mood calm and he was happy to see me; I was not longer the enemy poisoning his food, wasting his money or needing to be accosted with a knife.

But these professionals know their clientele; once we found my husband a spot in an assisted living home, he asked my son to hold a staff member down so he could kick her in the a**! The outbursts and rage reactions were still present, but no longer directed at me. He was safe and so was I.

A year later, my husband's needs for assistance with skills of daily living exceeded the capacity of the assisted livning facility and we moved him across the street to a memory care unit where he has resided for the past two years. He is no longer angry or anxious; when asked if he is happy, he decides depending on his basic needs for food, warm clothing or cleanliness being met. 

Alzheimer's disease has stolen so much from this man and from his family and friends. Let's all work together to pressure the government, raise money to fund research to find a cure or a prevention for future generations and to support the caregivers who travel  on this unpredictable journey for such a long time.

Monday, February 3, 2014

Love and Dementia in the Month of Valentines February 3, 2014

Daniel Jones, the editor of the column in the NY Times Sunday Styles section that I read first every week has written a book "Love Illuminated: Exploring Life's Most Mystifying Subject (with the help of 50,000 strangers.)"

He speaks of the young who are always seeking love and the long-time married who are concerned with getting the love back into their relationships. He talks about the three groups of married people who try to get back the passion, excitement and attention they experienced as new lovers and concludes that some seek satisfaction outside marriage, some "quash" their feelings and are "appreciatively resigned" to accepting life, marriage and their families as they are, counting their blessings every morning and some who work very hard to restore the old flame only for all to discover that "good enough" is great!

He cites Ayelet Waldman, Michael Chabon's wife and an excellent writer on her own, who asserts publicly that she puts her relationship with her husband above that of her children and that the couple has maintained the excitement, attention and passion of their long relationship. She was met with jeers and hostility when she spoke on an "Oprah" show!!

So what happens to love when we have great, good, or even good-enough marriages and one spouse develops dementia, Alzheimer's disease,  fromto-temporal dementia or Parkinson's dementia???

The healthy spouse first genuinely cares for the less able partner, providing all the love the couple once shared and sort-of turning that love into the kind of caring they formerly provided for young children, which can be fulfilling for a while. The caregiving spouse PAYS attention, unfortunately gets Excitement from behavioral changes that occur with the afflicted spouse and is Passionate about all medications, supplements, health articles-- anything that will keep the relationship as well as the partner--alive longer.

My friend who has recently become a widow explains that she surprised herself by falling in love with the dependent, sweet man, so different from her spouse of 50 years she visited in the memory care center. Truly, her husband was the darling of the center--loved by everyone. 

Now my husband and one female resident share that spotlight. No one here knew either of them when they were vibrant, healthy intelligent communicators. They are loved, cared for gently and compassionately, but for their families it is definitely not good enough.