Caring for a Loved One with Alzheimer's Disease

A Christian Perspective

Elizabeth T Hall, Harold G Koenig

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781317826248
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Clarify your thinking on an issue that can tear families apart! Caring for a Loved One with Alzheimer's Disease: A Christian Perspective is the touching story of a woman's daily struggles as a caregiver to her mother who suffers from Alzheimer's disease. You'll learn how God's presence in her life has helped her. You will also find practical day-to-day tips for living with a loved one suffering from senile dementia and how your spirituality can make the journey easier for both of you. This important guide provides an honest description of the emotions you may be forced to come to terms with while dealing with a loved one or parishioner with Alzheimer's disease and how God's presence in your life can help lift that burden. Caring for a Loved One with Alzheimer's Disease gives you firsthand accounts of the stages of pain, despair, acceptance, and victory that you may experience while caring for someone with Alzheimer's to let you know that what you are feeling is normal and that God will help you overcome these challenges. Alzheimer's disease often goes undetected until its later stages. This informative book renders a clear description of the disease, alerting you to the known warning signs of dementia, and preparing you for the possibility of such a diagnosis. Caring for a Loved One with Alzheimer's Disease is filled with tips and suggestions to make caring for your loved one easier for both of you, such as:

• learning to separate the person from the disease
• researching the disease and keeping informed about every aspect of this progressive and irreversible neurological disorder
• realizing that you need emotional support and should seek help from your pastor, church care group, or best friend
• discovering how having power of attorney and creating a living will can prevent many problems in the future
• understanding that to care for your loved one at home is challenging and that taking simple steps, such as "baby-proofing" your house, will prevent traumatic disasters
• turning your anger and guilt to positive energy and avoiding emotional drain and strain This unique book offers you solace amidst the turbulence of caring for someone stricken with this difficult condition. Caring for a Loved One with Alzheimer's Disease provides an open and honest description of how faith can comfort and support you and your family while you care for someone with dementia.

Chapter 1

Faith in Spite of Fear

Now faith is the substance of things hoped for, the evidence of things not seen.

Hebrews 11:1 (KJV)

As your parent, spouse, or other family member begins to exhibit personality changes, they may be so small as to be ignored or, as in my case, simply a magnification of prior habits. They do not seem important enough to be more than normal irritants of the day, nothing that really requires focused attention or changes in lifestyle. You will become irritated when he or she tells you the same story over and over. You will become more irritated when you answer the same question ten times in as many minutes. You will still probably not be ready to acknowledge that a progressive, irreversible disease process is at work and will believe that he or she could change if only he or she would pay attention.

When did my mother first exhibit signs of approaching dementia? I’m not sure. I noticed a withdrawal from friendships, but did not realize it was part of a disease process. She had always been a “loner” so her withdrawal seemed unimportant. I remembered that most of the visitors to our home in my childhood were friends of my father’s rather than hers. She began to resent the friendships I had. I was an extrovert, she an introvert.

I attributed her attitude to jealousy. She had never cared for the idea of my having close friends. I ceased to invite my friends to my home and visited them in theirs. I took her out to dinner and shopping when my teenage son was having his “Super Bowl Sundays” in our home. She resented having teenage boys sitting on “her” couch and eating at “her” table. I told myself that she was beginning to resent her increasing dependency on me. She could no longer drive, she began to burn food when she cooked, she began to put toothpaste in the refrigerator and whipped cream in the medicine cabinet. She began to tell us of things she had seen on television that weren’t possible. She forgot to give us messages. She forgot birthdays, especially mine. She began to call me at work each day to tell me that I had received mail and should come home at once to open it. She told us of dinners at the White House with the Carters and visits in her home from Patty Davis (President Reagan’s daughter). Each new strangeness was looked upon with “after all, she’s getting old.” We were able to shrug off this odd behavior by thinking that she had difficulty seeing, hearing, and that memory lapses were common for the elderly. We refused to realize that memory loss to this degree is not normal.

The first real indication of a personality change was her behavior at Christmas. She had always been very generous with her gifts for the family, but now became miserly. Christmas shopping became a nightmare as she complained about the price of everything. The last Christmas I attempted to take her shopping she had bought something for everyone even though she complained. Finally she asked what I wanted. I was so exhausted with the whole procedure that I looked around where I stood, saw a pretty hot dish mat and said “How about this?” She looked at the price, $1.99, and said that she hadn’t planned to spend that much for me. I felt that she thought I was too worthless to be given a gift and was hurt beyond measure. I thought, in my heart of hearts, that my years of devotion and care for her and the rest of the family were totally unappreciated. I did not receive a gift from her that year, nor have I since. I now understand that her present personality is one that doesn’t recognize me as her daughter, but as her caregiver. However, each Christmas morning I feel a momentary stab of hurt before remembering that she gave me the gift of life and cared for me when I was as helpless as she is now. I realize now that her perceptions have so changed that she is incapable of being aware of the feelings of anyone around her. Her mental state resembles an infant who can only perceive her needs and wants regardless of the surroundings.

It was during this time that my own clinical depression became so severe that I began therapy. I feel sure that in the midst of my own misery I failed to notice some of hers. I believe that this was certainly the reason I misunderstood her miserliness. Looking back, I’m sure that she was suffering from depression also as she realized more and more that her cognitive functions were failing. Her depression manifested itself as anger, so I responded in the same manner.

She became ultrapossessive and very vocal about my leaving her to go anywhere other than work. She nagged me each week about my therapy and called it self-indulgent and “silly.” Mother’s greatest term of condemnation was always “silly.” Being “silly” and being sinful were equal in her eyes. At this stage in her disease process everything not concerning her directly was “silly.”

I felt that with the sense of excessive privacy she had always exhibited she probably resented my telling an “outsider” family secrets. I didn’t realize that she was much past being aware of that aspect of my treatment. She was exhibiting fear and jealousy of an “other” being a part of my life. She wanted me to talk only to her. She interrupted all my conversations with my son if she was able.

She became very jealous of my friends and refused to stay in the room if they visited and insisted that I cut off phone conversations. Again, this was not new behavior, merely magnified. I was so accustomed to her attitude of “me and my wife, my son John and his wife, us four and no more” that I hardly realized that it was a part of the disease process. I knew that I had been, in her mind, the one standing between her and hurtful or frightening experiences since my childhood. In some measure she had felt that I, even as a child, was able to solve her problems and protect her from emotions she couldn’t deal with. Not realizing, again, the disease process we were faced with, and being so depressed myself, I merely attempted to discuss it with her in a calm and rational manner. She refused to discuss it other than to tell me that I was a “bad daughter” or a “bad mother.” I eventually realized that I was finally, truly, the only one standing between her and the many fears she faced. This was extremely difficult for me; I had as many fears as she did and mine were real; no monsters under the bed or bad guys tapping on the windows. I now realized the truth of the verse at the beginning of this chapter. Indeed my faith was not based on anything I could see but was the substance of my hope that things would get better—either she would improve or I would learn to deal with her illness.

And I have learned, little by little, that my faith was not unfounded, but God did teach me to deal with each circumstance as it arose. Of course I made many mistakes in the early years, which I will recount and hope that you, the reader, will follow the suggestions listed rather than “muddling through” as I did.

When you, as the family member most likely to become primary caregiver, begin to suspect or to wonder if a disease process is at work, schedule a complete physical and mental evaluation with a geriatric specialist. This complete workup may constitute several visits and involve everything from chemical analysis of the blood and urine to cognitive function studies, along with a complete family history. You, as the family member, will be interviewed also and comparisons made between your interview and your relative’s. Do not be surprised if your view of the family dynamic and your loved one’s are not the same. I recall being aghast at my mother telling me of an answer she had given in her family history that was an outright lie. When I asked her why she had done this, her answer was that it was none of anyone’s business what her childhood was like. I could not absorb the idea that she did not realize the importance of this interview to her health and treatment.

Then, after all the tests, the time will finally come when you will be scheduled to see her physician(s) and receive the diagnosis. Instead of going into this interview blindly with visions of a “magic pill” or surgical procedure that might help, the following tips will help you to survive the initial shock. These are recommendations—things I wish I had done.

1. If you have any suspicions that Alzheimer’s disease may be the diagnosis, study, study, study. Alzheimer’s is a progressive, irreversible, neurological disorder. Go to your local libraries and read everything available to you so that you can ask intelligent questions.

2. Bring in outside emotional help for yourself prior to going for the diagnosis. Ask your pastor, church care group, best friends, and so on to join in prayer with and for you, especially on the day scheduled for your physician’s visit.

3. Do not go alone with your loved one to the physician’s office (this learned the hard way). Take along a supportive friend or family member in the event that you are too distraught to drive home or to deal with your loved one’s questions and fears.

4. Alert the family that the diagnosis is coming. Be sure to include everyone concerned. If any dementing disease is the diagnosis, do not be surprised at the variety of reactions from family members. Some may be able to handle it quite well, while others may go into a form of denial.

My family was one in which display of any emotion had been discouraged for several generations. It was surprising to me just how many were in tears when the diagnosis was made. It mattered not at all whether it was Alzheimer’s disease or multi-infarct dementia. Dementia was the operative word which brought such despair to the three generations involved.

Having cared for both grandmothers who were demented due to strokes and having assisted Mother with my father’s care after he became demented due to a severe brain injury (suffered in an auto accident), I thought that I was prepared for anything. After all, we, in my family, took whatever was handed to us and overcame it. We, especially myself, were tough. It never occurred to me that there was a situation in which nothing I could do would help. I was the strong one, the upright post that others leaned upon. I could be super-whatever-was-needed. I had yet to learn the fact that super-whatevers are fictitious characters. I had yet to learn that the only thing I had to hold me up was the super God who had created us, loved us, and stood waiting to care for us.

For me, it was months before healing tears began to flow. I began to clench my jaw, put my shoulder to the wheel, keep my chin up, disguise my fear, and determine not to let this get me down. I constantly reminded myself of our old family physician from west Tennessee, who told me that he had seen three generations of my family through devastating situations that would put an average person down, but that we always got up to fight again. I didn’t need to know that. I needed permission to grieve, to become angry, to give up. I needed for there to be some way in which I could say “I can’t.”

I only knew at this time that faith in God was all I had to hold on to. I had yet to discover that His grace was more important than my faith. I had not yet learned that He would share my burden, lighten my load, restore my soul. The weight of the world had suddenly descended on my shoulders and it was mine alone to bear.

I needed help to adjust, but I ran directly away from help rather than accepting the help offered by friends. I studied all the books, viewed all the videos, tried all the “home remedies”; I worked on memory exercises with Mother. I went straight to work then directly home to care for her. I allowed myself no respite, no rest, no ease. I did everything the hard way, as if I believed that hard work would somehow give better results than accepting help and using labor-saving shortcuts.

I believed deep down that I must have done something terribly wrong for God to have punished me in this way. I never dared express this feeling to anyone for fear that they would agree with me, which would make me feel still worse.

However, life went on. I held on to my faith in God’s infinite goodness and believed that He would somehow change the situation. I had not yet learned to lean on Him or to accept the freely given gift of grace sufficient to my needs.

Chapter 2

Caring for Your Loved One—Legally

While we were dealing with the many changes in Mother’s behavior, my daughter-in-law was working at Duke University’s Geriatric Evaluation and Treatment Clinic and suggested that we have her evaluated there. Mother refused. Eventually my son told her that he had made an appointment for her and she would go if he had to physically carry her.

Although she did not then have enough symptoms to warrant any changes in her treatment or lifestyle, we were encouraged by her physician to have a power of attorney drawn up in the event of her later disability. This we did. I cannot stress too much the necessity for this step when the process of aging begins, even if there are no symptoms at all of approaching dementia. The same legal documents may be needed in the event of sudden illness, accident, or surgery.

I also want to stress here that importance of discussing that wishes of each family member for drawing up living wills and health care powers of attorney. Some family members may have an almost superstitious fear of putting their wishes on paper. If so, make certain that you know their wishes and have them verbalize these wishes to their physician. My mother always refused to put anything in writing. When we had suggested for many years that she make a will and a living will her response was always that I would know what she wanted and that I was the only one to be considered since I was an only child. She could not be convinced that state laws varied and that I might not necessarily be given the direction of either her estate or her health care. In addition to the practical necessities of the mentioned documents, there is an emotional security for all family members in not having to make difficult decisions in the midst of an emergency. In fact, when I realized the complications inherent in dementing illnesses, I immediately drew up all these documents relating to my own health as well, so that my sons would not be faced with tough decisions at a time when emotions are running high.

In the event that more than one person may be involved in the care of one who is demented, having open discussions and legal documents in place prior to need may avoid family quarrels later. Taking advice from a specialist in geriatric medicine, as we did, can smooth out many rough spots.

Some of the most frustrating, yet the most humorous, incidents of our journey have come as a part of caring for Mother’s legal affairs. We were some months, if not years, into her illness before I realized that she was not competent to handle her business affairs. I took over her bills, taxes, and so on at that time, and for the first year there weren’t too many problems. She had only been paying the minimum payment due on any of her revolving charge accounts, so I began to make larger payments. Her taxes were not difficult at that time either. The complications arose later when she had to be placed in a skilled nursing facility in an emergency situation. Since her income was not quite large enough to cover the cost of her stay there, Medicaid stepped in, which meant that she was only allowed to keep a small portion (the amount varies from state to state) of her income. That small portion would not stretch to cover the payments on her charge accounts and I began to make the payments from my income. This was brought to an abrupt halt when I became disabled and was forced to live on my savings for the nine months before my own Social Security pension was granted. To my surprise, creditors were totally unsympathetic and unwilling to work with me in any way to make arrangements to complete paying the amount owed. In addition to daily threatening letters, I received daily telephone calls, which were even more threatening. I eventually was able to stop the telephone calls but continued receiving threatening letters.

My mother had no assets that could be sold to pay off her debts, and even if she had, I had been informed by the state that whatever assets were left upon her death were to be taken to reimburse the state for the Medicaid funds expended. I was quite amused during one of the many telephone conversations with one of the major credit card companies when the gentleman calling offered to change my mother’s account to my name and issue me new cards with a fairly substantial credit limit above the amount still owed on my mother’s account. I told him that made me worry about the future of his company. After all our conversations regarding my lack of ability to pay my mother’s debts from my own funds he was offering a credit line to someone who was unemployed, disabled, and had no source of income or hope of any in the near future.

The next legal problem arose when I was informed by my mother’s caseworker that I should have the income tax that was withheld from her monthly pension stopped. Upon telephoning the appropriate governmental body in Baltimore, I was told that my mother had been deceased since December 1974. After strenuously insisting that she had been very much alive fifteen minutes earlier when I had left the nursing home, and thereafter going through two or three levels of staff members, I spoke to the department head and told him my story, relating how each department had told me the same thing for two hours. I assured him as well that my mother was not only alive but was physically quite healthy. I also informed him that it was my father who had died in December 1974. When he continued to insist that it was my mother who was deceased, I became exasperated enough to ask him to send me a copy of her death certificate, so that I could take her out of the nursing home and have her buried. He, loyal civil servant that he was, was not amused. Nor was I by that time.

The following year I had the identical problem when I brought her home to live with me and needed to have her income tax withholding reinstated. ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• My Statement of Faith
• Preface
• Acknowledgments
• Introduction: The Reason for It All
• Chapter 1. Faith in Spite of Fear
• Chapter 2. Caring for Your Loved One—Legally
• Chapter 3. Surviving the Diagnosis
• Chapter 4. Choices: Stage One
• Chapter 5. Giving Up
• Chapter 6. Anger: When “Nasty” Creeps into Your Life
• Chapter 7. Agitation, Sleep Disturbances, and Other Disasters
• Chapter 8. Dialogue with Dementia: Communication Problems
• Chapter 9. Individual Differences
• Chapter 10. Fears, Phobias, Fantasies, and Other Foibles
• Chapter 11. Role Reversal: Learning to Say “No”
• Chapter 12. Taking Care of Yourself
• Chapter 13. Smoochies, Snugglies, and Other Warm Fuzzies
• Chapter 14. Choices: Stage Two: Placement?
• Chapter 15. Support Groups
• Chapter 16. Survival Pointers for Everyday Life
• Chapter 17. Moral Judgments: When Black and White Turn Gray
• Chapter 18. Journey’s End
• Epilogue
• Closing Thoughts
• I Heard My Mother’s Voice Again
• I Wonder About Alzheimer’s
• Waiting
• Today
• Fighting Back
• Final Prayer
• Recommended Reading
• Index