Goodbye to Lindy April 25, 2014

We all met Lindy when he accompanied his wife last year to our support group meetings. We knew him as quiet, intelligent, knowledgeable, sweet and unassuming. He lived at home with his devoted wife until he was unable to care for himself and she was no longer physically capable of caring for him. He finally was able to live in a brand-new assisted living facility where his wife joined him every evening for dinner in the well-appointed chef-run dining room.

Finally because the family was not able to support his placement without financial assistnce from the state. His children were not able to assist financially  but also not helpful in getting this accomplished.

We members of the Alzheimer's support groups I lead or belong to in Arizona have many members who live in second marriages which have been happily in existence for two or three decades after one or both spouses retired. Arizona is of course one of  the most popular retirement destinations and many people marry again after their first beloved partners die and most marry partners who have been bereaved themselves or divorced.

The families I have been privileged to meet really appreciate their good fortune in finding second spouses with whom they are compatible and in living comfortably in warm winters without the strains of professional life or child-rearing. They make new friends, pursue hobbies, volunteer their time in many organizations until --booom- one of them begins to change due to incipient dementia, cognitive impairment and Parkinson's disease or Alzheimer's disease is diagnosed. 

Most of the couples I have met merely shift the responsibilites slowly from the affected person to the more cognitively healthy one, although many of them have physical lmitations themselves. They don't often share their burdens with their own children who live in another state and rarely confide in the affected spouse's children. It is only  when the children arrive for a holiday visit that they begin to sense something is amiss. Some children return home and do nothing until the next visit; some offer helpful suggestions, increase the number of visits and participate in the decision-making. Others less so.

The burden and the stress of caregiving for a beloved spouse weighs heavily on the caregiver. Nancy Reagan called it The Long Goodbye.  It is so helpfu to have adult children and grandchildren support the caregiver to make the affected person's life as meaningful and as safe as possible.

The Visiting Wife is Here April 17, 2014

Just as new parents and grandparents tell all who will listen of the ingenious feats of their newest family members, we caregivers of Alzheimer's diseased spouses and parents reduce the tension in our lives and in our support meetings by recounting the antics of our loved ones. For example when my Mom had Alzheimer's disease and was in the middle stage of the disease she no longer could hostess or prepare food for herself or others, but when she greeted vistors she always continued to ask "Can I get you anything?" I tell this story as well as the fact that Mom could play the piano "get music out of that" which is what she would say anytime she saw a piano.Then she would sit at the piano and play parts of classical pieces she recalled until three months before she died.

My husband has been in out of home placement due to his agitation, aggression and violent behavior for three years now. I visit daily and my son visits at least once each week when I am in town and more frequently if I am away. We did not know for a while whether my husband recognizes us still, as his speech is less intelligible all the time and he no longer calls us by name. He hold his arms out for a hug whenever anyone comes to visit him or the other residents who have been at the home with him for a

significant period of time.His speech is usually clear only when he needs something such as food or assistance in the bathroom. This in itself is amazing. He sounds just like his pre-Alzheimer's disease self when he is demanding. Sometimes he asks for a banana or an apple, milk or coffee specifically. Mostly he says "I'm hungry."

With me he directs me to walk, to "get up" if I sit. "Let's get out of here" is still a favorite refrain but when we do leave the premises his wish is to return quickly to the comfort of his familiar surroundings."Let's go back" he will state clearly. Sometimes he is annoyed with the leaves that have fallen on the path or the sidewalk or with the temperature. "It's too hot," he will say or "I'm cold."

He is quite anxious lately and seems to need to walk all the time except whe he naps.

So we were really amazed this week, when Steve entered the unit, saw my husband walking, greeted him and said "Look who I brought with me." My husband turned, saw me, turned back to Steve and said, "The visiting wife is here." So now I have the validation I have been seeking for several months. Inside his head and his heart, sometimes, my husband still knows who I am and that knowledge makes it all worthwhile and lifts my spirits.

Clearing the Fog April 9, 2014

When I get sidetracked it is often difficult to return to routines I find fulfilling and helpful. Thus, when my husband became ill last month, I stopped writing--including this blog-- even though he has since fully recovered and is requiring less of my time visitng and worrying.

When there is a difficult problem I need to solve, I seem to get lost in a fog with only the problem and its subsequent decisions and behaviors taking up all of my energy; the rest of my days seem to go by on automatic pilot even after the crisis has past, usually until someone calls me on my neglect.

It is so helpful to me when a friend phones and says "I've missed you at the gym. Are you all right?"

This time it was a friend from NY who phoned and asked why I had not written a blog entry since March 18th. It is time to awaken to the beauty of the Arizona Spring - April when the cactus bloom and the desert is alive with color!

I attended an Alzheimer's Association Support Group Facilitator's Training session yeaterday about the need for healthy as well as symptomatic folks to volunteer for clinical trials at the Alzheimer's Institutes. The speaker stated it was due to the thousands of volunteers that an antivirus was found to treat HIV-AIDS. We need to find a cure for Alzheimer's disease! It is so difficult to watch the fog around my husband deepen which locks him far from us who love him.

Clearing the fog is sometimes as simple as cleaning our eyeglasses and seeing the world more directly. Sometimes it is confronting an issue that seems too difficult to tackle; facing it head-on, asking for help will often clear my head so I can deal with whatever I have been avoiding.

And now preparing for the holiday will give me the lift I need. Passover and Easter are times of rebirth, revitalization, of reconnectiion with friends and family. It is time in April to remember the six million who perished under the tyranny of Nazism and it is also the time to celebrate life, to appreciate the blessings we have and to purposely enjoy the relationships old and new we have made, to invite others to share in the bounty of the spring fruits and vegetables and to share ideas and companionship.

Happy Passover and Happy Easter.

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.