When Dan was first diagnosed, Cognex had just come on the market.  Cognex is one of a class of remedies known as acetylcholineterase inhibitors that temporarily slow the progress of the disease. The doctor prescribed Cognex (generic name Tacrine) for Dan, but the insurance company would not pay for it.  I wrote letters and made phone calls to the insurance company, and Dan’s doctors wrote letters confirming the viability of the drug.  After six months the insurance company added Cognex to its list of approved drugs.  His prescription was later changed to Aricept, a similar drug with fewer side effects and the one most commonly prescribed (generic name, Donepezil).

When, in the spring of 1997 Dan had moved into an aggressive stage as his Alzheimer’s symptoms increased, the doctor tried several medications.  Finally, Ativan, to be used only when necessary, was prescribed.

I found it necessary when we flew to Florida to help my father, who had lost his wife.  My father enjoyed conflict and set up both verbal and physical confrontations with Dan.  Dan would retreat to our bedroom, growl at me like an animal, and put towels or sheets in his mouth.  The Ativan helped him.  My emotional state was not ameliorated.

In the fall of 1997 when Dan’s aggression had increased and he spent time in the Mental Health Center in Duluth, a combination of Paxil and Resperidahl was prescribed.  The drugs gave him control of his emotions, and all seemed well.  Then Dan developed a twist in his spine and began to walk with a definite tilt to the right.  He did not seem to be in pain, but he was unsteady and in danger of falling.  The doctor recommended physical therapy. At first the therapy helped, but he became worse if we walked on our daily round trip to the mail box.  More trips to the physical therapist brought diminishing results.

During an appointment with the psychiatrist for a routine evaluation, we were sitting facing a desk and talking.  He did not giveDan a physical exam. I did not mention the spinal problem to him, but he noticed it as Dan sat down  “Looks like a side effect of Resperidahl,” he said and greatly reduced the dosage.  Dan walked straight again and regained his former mobility.  The problem would have continued undiagnosed and diminished Dan’s mobility for his remaining years, or as long as he was on resperidahl . Becoming knowlegeble about the side effects of prescribed drugs is a matter of self-protection.

Paxil also had a side effect, decreased sexual libido, a fact the doctors did not share with us for a year, despite my persistent question..   After the Paxil was prescribed our physical relationship declined rapidly.   I felt the doctors had cheated us by not informing us.  However, by the fall of 1998, Dan was in diapers and physically and mentally no longer interested in or able to have a physical relationship.

In the spring of 1999 Dan came down with pneumonia. When Dan was admitted to the hospital with pneumonia, the on-duty doctor prescribed antibiotics, but Dan did not respond.  The doctor seemed to feel that if Dan didn’t make it, it was for the best. I thought I could let go if he didn’t make it, but I found I was not ready for Dan to die.  “What future does he have, do we have?” I asked myself, but an overwhelming sense of loneliness would overtake me.  His presence still provided me with comfort.

Our family doctor ordered a change in antibiotics and took a more aggressive approach.  Dan’s decline stopped, and a rapid recovery followed.  After Dan was well, the doctor ordered a pneumonia shot—good for seven years.

I debate with myself the value of saving Dan. The Alzheimer’s brought a slow withering of the person and of our relationship, but a new relationship with a childlike person took its place, a person for whom I was entirely responsible.  Therein lies the rub.  I had to make life and death decisions for him.

Fortunately Dan and I had both made health directives that detailed how we wanted to be cared for in an end-of-life situation, what efforts should be made or not made to sustain life.

The final years of Alzheimer’s are not pretty and the medical decisions get more difficult.  Dan slept more and more.  His ability to walk steadily decreased.  Standing for a moment, he would close his eyes and remain in one spot.  The external world seemed to have no greater meaning if he had his eyes closed rather than open.

Dan’s coordination between hand and mouth faltered.  Sometimes he had food or drink in his mouth and did not remember how to swallow it.  Feeding him became a slow process.  His swallowing became more difficult and everything had to be pureed.

During the last months the hands on care greatly increased.    I still had my regularly paid help fifty hours a week, and by this time we were enrolled in a hospice program.  This meant weekly visits by a nurse, an aide to come in to bathe him if needed, and a variety of support people to give information and help.  A volunteer came several hours a week to sit with Dan. The hospice organization provided information on the dying process, responded to needs ranging from medication to equipment and supplies (most of it free) and provided comfort to patient and caregiver.  Dan had to be moved every few hours to reduce the risk of bed sores.  We moved him from bed to wheel chair to easy chair to bed.  The bed sores still erupted.  Diaper rash, yeast infections, and other irritations developed in the diaper area.  During the last weeks of his life Dan could swallow very little.

Near the end come the tough questions for every family.   Do you use tubes for food and water to keep the person alive?  Kidney machines, oxygen?   Dan’s health directive was that he didn’t want to be kept alive by extraordinary means.  What are extraordinary means?  What if we shut everything down and then a miracle cure came along that could have reversed everything?  (The Alzheimer’s Association has good literature on the final stages of Alzheimer’s and the decisions to be made.)

When my father was in his final days of life, we could not find a health directive although he had told a close friend he had one.  I was the one on the scene and I had to make decisions.  I was fortunate that my aunts and my brother were supportive and all voiced opinions compatible with mine when I surveyed them.  If there had been opposing views, a living will would have been a necessity.  Documenting our wishes is a gift we can give the family members faced with the choices.  Medical centers and hospitals have the forms, and filling them out is fairly simple.

Of course, until the final moment, some vestige of hope remains, and sometimes hope is rewarded. While Dan was alive, there was the hope that the miracle cure would be found, but being in line for the newest drugs and treatments requires persistence and chutzpah on the part of the caregiver.  I pushed our doctors for information, made telephone calls, and searched the internet for information.  Knowing what is good information and what is false is tricky, and checking with your doctor is always a good idea.

Recently health stores have been selling Huperzine A, an herbal product that has an acetylcholine inhibitor.  Some trials have been done with Huperzine A that suggest it may slow but does not cure the disease.

Another drug now used is Memantine, sometimes in combination with Aricept.  Memantine is described as a moderate affinity NMDA receptor antagonist.  Simply put, it helps restore signal transmission in the brain.

Curry has been studied because it contains turmeric.  People in India use curry in their cooking, and they seem to have a lower rate of Alzheimer’s.

Many herbal supplements are also touted, but no one should take herbal remedies, including Huperzine A and curry, without consulting a doctor.  The herbal supplement may react negatively with other drugs being taken, and most herbal remedies have not had the scientific trials and reviews of approved drugs.

The media often highlights some report that “promises a cure,” but very often these are initial observations or trials, and later results do not support the initial supposition.  As with any disease, there are many, many promises of cures that are simply hoaxes.  The caregiver has a minefield to traverse.  The family doctor is usually more than willing to provide the latest information on medicines and research.

Strides are being made in slowing and even halting the disease.   Someday there will be a cure.

Medical centers across the country have experimental trials for which patients can apply to take part.  The Alzheimer’s Association (1-800-232-0851 or www.alzmndak.org), your own medical network (ask for their Memory Clinic), and the internet are places to search for these studies.  On the internet use key words “Alzheimer’s Clinical Trials.”)  Most clinical trials will only take patients in the early or middle stages.