Dr. Val Farmer
Rural Mental Health & Family Relationships

The Wife Of An Alzheimer Patient Gives Advice

April 5, 1999

I received a manuscript of a book, "An Alzheimer's Primer," from an old friend, Emily McLaws, who lost her husband Monte to Alzheimer's disease. The symptoms first appeared, though unrecognized at the time, in 1987. Nine long years later, Monte passed away. These are some conclusions she draws from her experience.

"Alzheimer's disease served as a primer for us in enhancing our sensitivity to other people and their needs and in finding out about our own character. It also became a looking glass into the character of others, who also confronted the effects of the illness. ..."

"What advice could I offer to other caregivers and possible caregivers about the things I learned? The first thing I would say is to be prepared for any eventuality by doing the things you can do early. The saying goes, ‘When the time of crisis arrives, the time for preparation is past.’

"This preparation starts with spiritual areas of life. Have faith in a supreme being who can help see you through these crises that are sure to come. Emotional strength and health is also important and sometimes stems from that spiritual life and from good relationships.

"I believe it is crucial to mental and emotional health to be true to your value systems. Do not do anything that violates them, like lying or cheating, or it will rob you of peace that you will desperately need. Physical energy and endurance come form eating good food, sleeping enough, exercising and avoiding harmful substances like drugs and alcohol.

"It is important to have your records organized so documents can be found quickly as needed for applying for Medicaid and Medicare. I tried to keep a log of Monte's doctor appointments and medicines. I was very conscientious about giving his medicines correctly.

"Getting a good doctor who was accessible to me and Monte and who understood the special needs of an Alzheimer's patient, like not waiting for hours in a waiting room as they get so agitated, was important. I would also get one who was not adverse to referring if it was needed and was aware of new drugs and programs. Sometimes I found ways to help educate the doctors by sharing information that I had learned, and I asked them lots of questions.

"I found education to be useful in dealing with the disease and tried to utilize all the programs that we could to give us help. The support group was vital because it offered understanding and friendship by people who truly knew what caregiving meant. They also gave information on needed resources, including names and phone numbers of agencies and people who could help.

"We had guest speakers who explained the rules for Medicare and Medicaid, presented information on Disability insurance, and told us of programs offered by Human Services in the state. Our leader was a trained Social Worker who offered professional counseling at no cost as she was paid by a home health agency. ...

"Adult day care was a new concept to me before Monte had Alzheimer's. I learned about it at an Alzheimer's conference. ... I also learned a lot about home health care. Unfortunately, most Alzheimer's patients are not eligible for home health care unless they have some problems other than Alzheimer's disease. To be eligible for home health where Medicare will pay, a skilled need is necessary and the patient has to be home bound. ...

"Neighborhood House, an adult day care center, was essential to my continuing to care for Monte at home as long as I did. The break that it gave me saved my sanity and allowed me some freedom. The help in transporting Monte by caring neighbors, and then through a bus system for the disabled, allowed me more time at home and eliminated the hassle of dealing with traffic twice a day so my nerves could heal.

"I suggest that women who have not dealt with financial affairs in their home to work with their husbands to make a plan that could be followed by them if they are left a widow including who to go to for trustworthy financial help about investments, insurance , taxes, and retirement funds.

"Getting a trust with durable power of attorney assigned and a living will solved lots of problems when the time came to use them. Also, it was important to have our cemetery lots purchased and paid for and a funeral plan already made up and filed with the mortuary

"Many little things were learned to help cope such as buying clothes and shoes that could be slipped on, keeping neckties tied or using clip-ons, and using electric razors to make tasks easier. I made sure that he had an adequate supply of shoes and eyeglasses that fit.

It was always hard to find things to keep Monte busy but any little tasks he could retain, like sweeping, vacuuming, or shoveling snow, helped him stay happier. It was important to keep his life simple and routine."

Emily is a gifted poet. Throughout her book are poems of great insight. Here is one that described her aloneness as death grew close for Monte.

Roles in a Death Play

Which role was harder to act as death approached?
His leading one of pain, disability and loss of memory
Or mine, as supporting cast,
watching and suffering with memories
left on stage at the end
trying to perform alone.