Illness March 18, 2014

When my children were young, I was always so upset when they were sick-- and so fortunate that none of them was sick often or severely-- but as parents, we worry. What can we do to make them comfortable? When do we need to see the physician? When do we need antibiotics or just let the flu or cold run  its course?

This week, my husband is ill; he has a chest cold and similar to his behavior during the many years when he was healthy, he wants nothing more than to be left alone when he is sick. But just as when my children were young, my husband who has Alzheimer's disease cnnot tell me his symptoms, cannot make good decisions regarding his health or anything else and it is so hard to just sit there, hold his hand, place a cold cloth on his forehead, give him tea with honey and let him rest.

It seems as if he has aged ten years in the past week; he no longer greets me as someone special in his life. I am merely one of the kind people who care for him on a daily basis. It is so sad to see his stooped form walkng slowly from the dining table to the recliner, relating to no one, eating very little.

What can I do? I can increase my diligence to advocating for this disease, to advocate for increased funding to provide research to find a cure for this devastating slow deteriorating brain disease -and to refute claims by some that this disease is merely the result of an aging brain!!!

My grandson and I had a late brakfast at our favorite restaurant ysterday and overheard a conversation at another two tables. At one table a man sat alone, a widower for 30 years who said his children swore to disown him and never let him see his grandchildren again if he dated or married another woman, an edict he has followed all these years!  A man across from him, a minister, said his wife is in a home; she has Alzheimer's disease and was diagnosed in 2001. His seatmate lost his wife to Alzheimer's disease 4 years ago. 

Maybe it is because I live in a state with a large population of older adults, maybe I listen for these stories more now, but when I spoke at a church last Sunday, almost everyone's hand went up when I asked how many folks knew someone who has Alzheimer's disease. I think the incidence has been increasing. Is it because we live longer now?

New finding in blood test for Alzheimer's disease --explained March 14, 2014

Much has been written in the past few days about a new study which has produced a blood test which  will some day be able to tell if you will get Alzheimer's disease. 

But if that's all you know, you are not well- enough informed. So let me share what knowledge I have about the test , the prognosis and what some of us have already chosen to help ourselves--and you can, too.

The study took healthy, nonsymptomatic 70 year olds as their subjects and tested their blood. Then they followed these people and discovered that some of them developed symptoms of mild cognitive decline or Alzheimer's disease a mere two years later!. The researchers went back to the lab with their new blood samples and began to compare.

They found that 90% of the folks who developed Alzheimer's disease or mild Cognitive Impairment had low levels of lipids in their blood at age 70. So far, the researchers have not stated which lipids were lower and they have not compared their results with the tau and beta amyloid studies, so this test is just at the beginning stages of development.

What are lipids?

Lipids are organic compounds that contain the same elements as carbohydrates: carbon, hydrogen, and oxygen. However, the hydrogen-to-oxygen ratio is always greater than 2:1. More important for biological systems, the carbon-to-hydrogen bonds are nonpolar covalent, which means that lipids are fat soluble and will not dissolve in water. There are four biologically important lipids:

• Fats
• Waxes
• Phosolipids
• Steroids

Read more: The Chemistry of Biology: Lipids | Infoplease.com http://www.infoplease.com/cig/biology/lipids.html#ixzz2vy3BQ5gH

What can we do? What has my physician already started me doing?

We can make sure we eat enough Omege-3's and other fatty acids, eat peanut oil and olive oil and reduce our worry about cholesterol, unless we are advised by our cardiologists that we have heart disease. Be avised that beyond cancer and heart disease, Alzheimer's disease is the largest cause of death in this country right now.

When One Door Closes, Another Door Opens March 7, 2014

For spouses or live-at-home adult children, caring for someone we love begins slowly. First it feels like a good, helpful thing to be of assistance to a formerly independent person. I never knew how I could help my husband; he knew how to do everything he needed for himself. It was even difficult to plan a gift for him as he bought what he wanted when he felt the need or desire.

But slowly he became dependent on me and my world narrowed to be with him which I enjoyed until the balance between us shifted significantly and I became his caregiver--and nothing else. There wasn't room, physically or emotionally. I felt drained.

I discovered journalling to relieve my stress and the computer permitted me to be present for my husband and write until I had enough material  to write a book.

Not all caregivers find this particular outlet, but we all need to find something other than caregiving to sustain us. Support groups help because other friends and family sometimes don't understand the stresses of caregiving a person with dementia-related illnesses. We need to have other outlets because when the final separation occurs, it always seems so sudden and the world of the caregiver feels empty.

In one of my support groups now, six members continue to participate altough they have lost their spouses or parent. In the other support group three members continue to participate after their spouses passed away. Those of us whose spouses or parent reside in a memory care unit are having difficulty transitioning from caregiver to single adult.

I have continued writing and my second book The Secret Key-A Journey of Discovery Generations After the Holocaust has been accepted for publication by Inkwell Productions who will also reissue Put That Knife Away. I will continue to speak with groups about Alzheimer's disease and I have begun work on what will now be my third book which will describe the difficult process of placing a loved one in a care setting outside his/her home, probably titled The Trauma of Out of Home Placement.

Stay tuned!

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.

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.

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.

Goodbye to Wally January 27, 2014

We are about to lose a sweet, loving Teddy-bear of a man who attended our Alzheimer Caregiver Support Group with his adored wife Carol. Since they had always done things together, he wanted to join her at the group meetings as well. He ate the snacks, sat by the door so he could visit the facilities whenever he felt the need and looked adoringly at his wife the rest of the time, asking questions occasionally when she spoke, wondering if she were talking about him. Until about three months ago when he forgot who she was, initially calling her his "cousin."

Since she was the axis about which his world revolved, when he lost her, Wally lost himself and he became unmanageable at home. It took 90 interminable days for the Arizona Long Term Health Care process to approve him for residential care and he was placed on a waiting list at the memory cere center, but just when the paperwork was complete, Wally became aggressive and violent and was admitted to the closed psychiatric ward of a local hospital where he has been for the past two weeks. Last week he stopped eating and drinking, his kidneys failed and he was moved to a hospice unit today with a two to three day prognosis. He breathed his last breath this afternoon with his beloved wife at his bedside.