For Better or for Worse

By Henri Couture

The author accompanies the Alzheimer's disease (AD) caregiver in the journey involving numerous care-based decisions. For Better or for Worse is presented as a resource and guide for caregivers and their families. Many AD behaviors and corresponding spouse reactions are the basis of the accompanying stories. Recognizing similarities to their own struggles, the reader can view how others have reacted. Most types of long-term care industry companies are described, including their advantages and license limitation issues. Examples of profit motivated care versus quality of life are included. The common thread is to increase the caregiver's knowledge and reduce life-threatening stress while benefitting the AD victim. Whether one is considering outside support or transferring the responsibility for care, the details are intended to be of benefit in the decision process. The author's decades of hands on AD experiences resulted in the Alzheimer's Disease Living Will. The referenced document can be critical regarding end of life care issues. "To control your own natural AD process" is the author's critical goal.

• Language: English
• Publisher: Covenant Books, Inc.
• Release date: Feb 25, 2020
• ISBN: 9781645596974

Book preview

Understanding the Foundation Blocks to Guide for Better or for Worse Decisions

As many of you, I now look back on family vacations as a special and memorable time. My wife and I would talk about where we would like to go and what the children might enjoy. We chose the time of year, the number of days, the route, the campground/motel setting, type of restaurant, and excursions.

Our health did not restrict us in choosing environments and services. Within financial constraints, we chose from our wants, not our needs. I suspect everyone has a similar vacation planning experience.

I believe your new journey has many function similarities to planning a vacation. However, you will now choose support services, housing environment, quality/variety/type of food and frequency of entertainment based on your specific Alzheimer’s disease (AD) challenge. This new task will also be restricted to your affordability unless family members assist.

However, most choices will ultimately focus on needs rather than the wants, a restricted list of choices. The time of year will likely be determined by the progression of the Alzheimer’s disease (AD). The setting should be matched with AD behavior. The restaurant piece of the challenge will depend on dietary needs. The actual dining room setting may be chosen after considering the number of residents or acoustics due to hearing challenges. Your choice of facility may depend upon menu repetition, entrees, food presentation, and overall quality.

The former vacation excursions that provided excitement and stimulation will be referred to as daily activities. The goal that the activity actually enriches one’s life should remain.

A critical difference is our physical presence. In a vacation setting, we accompany our children or spouse. This new plan will ultimately include more trust due to your non-presence for the vast majority of necessary support services. I feel secure in stating that you are very well aware of this less-choice trip you have already begun.

I’m confident you hope for the greatest possible quality of life for your spouse. However, as quality of life is a very subjective phrase, my goal is to help you make the best decisions, improving the degree of success relating to the setting, services, and quality of life.

Ultimately your assessment, your decision. The journey is divided into two legs.

First Leg of the Journey

A general list of licensed senior care participants is provided. I expand upon their specific roles and services, reviewing similarities and differences.

I have included many categories related to true-to-life stories that hopefully humanize my thoughts. Ultimately, I trust the information guides you to choose the best solution(s) for your present and predicted needs.

This first leg comprises 90 percent of the book.

Second Leg of the Journey: The Letting Go

There are so many points of view from the supporting and medical community. A sample would be

from a medical doctor’s perspective, concerns include normal loss of weight for those afflicted with AD. That factor alone usually directs attention to the inclusion of dietary supplements.

a therapist is properly motivated to assist a client with basic walking. Ensuring they have the best possible posture does have a positive effect on the likelihood of falling.

daycares would prefer daily attendance. Such participation helps them with staff scheduling and meal/snack requirements.

an Independent Living Community (IL) keeps track of meal attendance (labor-food cost), allocation of housekeeping staff time, and life-enrichment activity/transportation cost.

an assisted living facility (ALF) is extremely labor intensive. Companies have sophisticated computer software to assist the administrator/charge nurse in determining the average time needed for assistance with personal care. The challenge is to have constant control of such enormous cost.

Efficiency in any operation is necessary and beneficial for overall performance and success. The American medical and supportive care model is very successful at extending one’s lifespan.

Although your initial challenge is to determine which service(s) best match(es) your needs, my Alzheimer’s Disease Living Will (ADLW) is written to provide better quality of life as it relates to dignity in dying naturally. It can be a critical document during the time of letting go.

As time passes, those very appropriate business and societal goals may become issues that are not supporting you or your spouse’s wishes for dignity in dying naturally.

I will explain the background and reasons relating to the importance of a living will that specifically addresses AD.

When you arrive at that junction on your trip, the planned route choices will make the experience less stressful. I consider it a predetermined GPS route.

Let’s Begin the First Leg of the Journey

The journey likely begins while living independently with symptoms of AD. Clearly, the organic disease causes the 24–7 caregiver to also become a victim. Additionally children, in-laws, friends, and neighbors can also be emotionally affected, sometimes reacting irrationally. Considering the emotions surrounding the for-better-or-for-worse process, the following story is intended to show how AD, even in the early stages, can affect grown children.

At eighty-three, Leo married Joan (no prenuptial agreement), motivating his children’s petition for guardianship. The historically frugal father’s (assets of $400,000) purchases and related memory concerns were the basis of legal action. The three-person committee’s (two physicians) report agreed with the children’s petition documentation. As judges usually agree with the recommendation, a guardianship was ordered.

Not surprisingly, the shocked new wife (assets of $600,000) petitioned for a court review. As a defense consultant, I called to get driving directions for our meeting. His ability to describe each street and approximate distances was immediate cause to question the court’s decision of his incompetence.

I recalled the court proceedings, being grilled about not being a medical doctor, neurologist, or psychiatrist. However, the cross-examination was successful in convincing the judge to allow my testimony as an expert witness. The preponderance of evidence was conclusive, and his legal rights were reinstated. I suspected the combination of stress, two homes, age, new diet, and medication created a temporary incompetence. The ingredients may have been the recipe for the passing perfect