Alzheimer’s Disease: Adversity Makes Superheroes

August 27th, 2009 Posted in Nervous System, Newsletter

coachbroylesplaybook_small Part 2 of a series | Read Part One

“Once you’ve lived as a caregiver you want to help everyone else that is experiencing what you’ve just gone through.” These are the words of Betsy Arnold, a woman on a mission. Around five years ago she lost her mother to Alzheimer’s disease. As her mother progressed through the three stages of Alzheimer’s disease, Arnold and her father, Coach Frank Broyles of the University of Arkansas, became Barbara Broyles’ main caretakers.

Currently 70% of the people who are diagnosed with Alzheimer’s disease are being kept at home. For many the main consideration for this decision is financial. A close second is the fact that people with Alzheimer’s disease do better in surroundings in which they are familiar.

Caring for her mother was both a struggle and huge learning experience for Arnold. Often she wished there was a manual on how to give the care an Alzheimer’s patient needed. It was only after her mother’s death that the time could be found to write the desperately needed book, Coach Broyles’ Playbook for Alzheimer’s Caregivers. This book, written by Betsy and her father, is free to download in either PDF (text) or MP3 (audio) format, or a paper copy can be mailed to you for the price of postage from www.alzheimersplaybook.com.

Early Stage: Rapid Changes

In the beginning everyone goes through a period of denial. People with the disease may try to hide the fact they can’t remember current events, or stop doing things they love because they fear their friends will discover their secret. Other people just can’t face the idea of such a devastating disease affecting their loved one. However, the sooner this phase is dealt with and left behind the better for all. For one thing time is health with Alzheimer’s disease. There are medicines that can temporarily restore mental abilities but the longer a person waits to try them the less effective they will be.

During the Early Stage people are still very functional. Often they are able to live alone. This stage generally lasts between two to four years. The individual may need help attending to mail. Filling out checks, mailing letters and filing statements may all become difficult tasks to perform. Making lists for the person can be a great help during this stage.

For the caregiver, learning how to establish a calming method of communication is essential. It will be important to make sure people with Alzheimer’s disease eat, stay clean and are comfortable. They may require help shopping for food and preparing meals. Simple tasks like brushing their teeth may turn into combing their hair with toothpaste if guidance is not provided. It is important to learn how to break tasks down to single steps. To brush their teeth first ask them to get the toothbrush, then to put toothpaste on the brush, to wet it, to put the brush in the mouth, scrub the teeth, spit the toothpaste out, rinse the mouth and finally to put the toothbrush and paste back. Each step is only explained after the previous step has been completed.

What the Alzheimer’s patient needs most throughout their entire illness is to be kept in their world with the dignity due every person. It is true patients will regress to infancy in their minds but they are adults who have frequently lived interesting and full lives. The backward journey they are on will often scare them, make them angry and cause them to display irrational behavior but on some level they will always know who loves them, who respects them and who wants the best for them.

It is best to figure out the full time care patients will need in the future while they are most able to have input into the decision.

Middle Stage: Loss, Frustration and Some Joys

By the time patients reach the Middle Stage they are often youngsters in their mind. In fact, they will most often talk about people they knew around the age of eight or so. If in doubt ask them how old they are or who they play with. This will help determine where the person is mentally. It is important to remember that when a memory is lost it is gone forever. So if the person is asking for their child and the adult child replies, “Here I am,” confusion and anger may result because the Alzheimer’s patient at that point may only be able to remember the child as a baby.

The Middle Stage could last as long as ten years. Often the hardest thing for the caregiver to deal with is the change in actions. For example, patients will ask a question but because they have no ability to retain the answer they ask the question again and again. They repeat the question over and over because the answer is really important to them. Frequently they will only let something go when they have forgotten the question.

At times frustration can overtake caregivers. They may want to treat patients like children because they are acting like them. This will only serve to upset the patients if they feel they are being belittled. It’s important to speak positively and allow the person with Alzheimer’s disease to do what they want, as long as it doesn’t put them in danger.

During the Middle Stage the disease will intensify. Everything from bathing and sleeping to walking will become more difficult. Wandering off becomes an issue because once lost they can not find their way home and may not be able to help others get them safely home either.

At some point they will even begin to lose the ability to figure out images. They can see objects and people but won’t be able to understand what they are seeing.

It is important to remember that even though the person with Alzheimer’s disease isn’t creating new memories the caregiver is. Little joys can be gained by sharing music, hugs and stories.

Late Stage: Three and the Count Down

This stage, which can last up to three years, is marked by the person regressing to the age of about three. Everything gets lost: bowel and bladder control, eating, self knowledge, recognition of others, walking and talking all become casualties of the disease.

Taking care of a person with Alzheimer’s disease is a labor of love. Caretaking is a hard job physically because the Alzheimer’s patient needs a lot of support. It’s a hard job emotionally because the end is near, and as much as caregivers dislike seeing a loved one suffer, they also dread the idea of not having that person in their lives. At this point many turn to professionals to provide additional or total healthcare for a loved one, and they themselves concentrate on being there to comfort the person.

A Ray of Hope

In general Promolife does not like to cover subjects where there seems to be little hope. We prefer to focus on solutions to health issues. With Alzheimer’s disease maintaining health is contingent on keeping the whole of your body healthy.

A healthy heart will bring more blood to the brain resulting in a stronger brain. Healthy lungs put more oxygen into the body. A healthy liver removes toxins more efficiently and so on. Proper nutrition, exercise, sleep and mental activity prolongs the brain’s ability to function. And just because there is no cure today does not mean there will never be the ability to heal or contain the condition in the future. In light of this it is vital the patient stays as fit as possible for as long as possible.

Supporting the Caregiver

Even though this newsletter concentrates on giving care to people with Alzheimer’s disease many of the methods explained here can be applied to other diseases like ALS and cancer.

Throughout the entire caretaking experience it is vital that caregivers guard against burnout, anger and the feeling their lives are no longer their own. Each day time needs to be spent doing things that make them happy, that will rejuvenate their energy and lessen their burdens. After all caregiving is akin to the work of superheroes, where ordinary people turn their weakness into strength for the betterment of others.

Article written by Cat Pippin Lowe for PromolifeNews.com.
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