When it was time for Mom to move from the house that had been her home for nearly forty years, I packed dozens of her journals into a large container. It took two men to carry it up the steps and into her new home: a box full of prayers and memories. A scientist might have been fascinated to examine Mom's writing to see how complexity of sentence composition and word choice deteriorated as her disease progressed, but I was inspired to chart her steadfast belief in God's love. This chapter is the result.
My mother went with grace into the dependence and infirmity of the disease which will eventually claim her life. As I read her journals I realized that the guidance she left behind is invaluable as a blueprint of how to age gracefully. Although there is no way to know what characteristics may have enabled my mother to continue to experience such peace and contentment even to the mid-stages of Alzheimer's disease, a study of her healthy spiritual habits may give some clues.
However, the alterations of character that occur with Alzheimer's disease have little to do with noble qualities cultivated in prior years—or lack thereof. There are heartbreaking accounts of kind and Christ-centered people who experience complete personality changes, and I know that the anger and violence I have seen other Alzheimer's victims exhibit may yet express themselves in my mother as her condition deteriorates. The specific portion of the brain that is damaged is the physical basis for the individual expression of symptoms. This chapter is not meant to be a set of rules to follow in order to avoid 'ungraceful' aging.
We walk by God's grace and not because of any virtue of our own, and this grace is ours through the shed blood of Jesus Christ. Our lives and our deaths are in His hands; "All the days ordained for me were written in your book before one of them came to be," (Psalm 139:16). Do not read this chapter thinking to emulate my mother's healthy spiritual habits and thus to avoid the pain of being a pain to others in old age! The only valid reason for the quest to develop holy life habits is the desire to glorify God.
Taking care of a loved one who is terminally ill causes our perception to telescope to the time when we will face the end of our own lives. This chapter is a challenge to each of us to put into practice those principles of Godly living that will make our brief time on this earth account for something of worth in God's Kingdom.
Monday, March 9, 2009
Chapter 10 excerpt: "Tucker"
I woke up early one morning thinking about Tucker*. Tucker was seven-years-old; a wiry little boy-child with a puckish grin. He won my heart with his mischievous sidelong glances and mirthful eyes as I tutored him in reading each day during his first grade year. Another reason Tucker managed to pull my heartstrings was that he had seen his pet cat run down by a car, and this awful experience had left him confused and in grief. Tucker was for a time preoccupied with death.
After reading a book about koala bears Tucker announced in sepulchral tones, "Koala bears die," and he turned mournful eyes to me. I could only nod in assent; his statement was absolutely true. Koala bears do indeed die. To no avail I attempted some platitudes about how much Koala bears enjoy life between birth and death. Another day we read a book about frogs. "Frogs die," said Tucker. "Everything dies." He looked at me as though hoping I would be able to prove otherwise and set his world to rights.
Blessedly, Tucker's preoccupation with death lasted only a few weeks and he soon recovered his happy-go-lucky outlook. But I knew why I'd been thinking of Tucker. I, too, had become preoccupied with death. I had read that Alzheimer's is an incurable disease that inevitably leads to death, and seeing this information in black and white had hurt. The recognition that my mother was going to die hit my heart, and I found myself thinking such cheerful thoughts as these: "My father died. My mother is going to die. And I am going to die." Like Tucker, I'd lost my comfortable illusion of safety from the unthinkable.
Everyone dies. A fragment of Scripture came to mind as I remembered that Jesus Christ came to, "Free those who all their lives were held in slavery by their fear of death" (Hebrews 2:15). I examined this passage in several translations and liked the way The Message says it best: "Since the children are made of flesh and blood, it's logical that the Savior took on flesh and blood in order to rescue them by His death. By embracing death, taking it into himself, He destroyed the Devil's hold on death and freed all who cower through life, scared to death of death" (Hebrews 2:14-15, MSG). Matthew Henry's complete commentary on Hebrews 2:14-15 says that because of what Christ has done for us on the Cross, "Death is not only a conquered enemy, but a reconciled friend...not now in the hand of Satan, but in the hand of Christ—not Satan's servant, but Christ's servant—has not hell following it, but heaven to all who are in Christ."
Later that evening I wrote the following entry in my journal: "Jesus Christ has conquered death. His purpose in coming was to deliver me and to set me completely free. He is trustworthy and He is in control. I pray for grace and the will to look steadfastly at Him so that I will not be afraid."
Today's Scripture: "Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts, 'Be strong, do not fear; your God will come,'" (Isaiah 35:3-4a).
*not his real name
After reading a book about koala bears Tucker announced in sepulchral tones, "Koala bears die," and he turned mournful eyes to me. I could only nod in assent; his statement was absolutely true. Koala bears do indeed die. To no avail I attempted some platitudes about how much Koala bears enjoy life between birth and death. Another day we read a book about frogs. "Frogs die," said Tucker. "Everything dies." He looked at me as though hoping I would be able to prove otherwise and set his world to rights.
Blessedly, Tucker's preoccupation with death lasted only a few weeks and he soon recovered his happy-go-lucky outlook. But I knew why I'd been thinking of Tucker. I, too, had become preoccupied with death. I had read that Alzheimer's is an incurable disease that inevitably leads to death, and seeing this information in black and white had hurt. The recognition that my mother was going to die hit my heart, and I found myself thinking such cheerful thoughts as these: "My father died. My mother is going to die. And I am going to die." Like Tucker, I'd lost my comfortable illusion of safety from the unthinkable.
Everyone dies. A fragment of Scripture came to mind as I remembered that Jesus Christ came to, "Free those who all their lives were held in slavery by their fear of death" (Hebrews 2:15). I examined this passage in several translations and liked the way The Message says it best: "Since the children are made of flesh and blood, it's logical that the Savior took on flesh and blood in order to rescue them by His death. By embracing death, taking it into himself, He destroyed the Devil's hold on death and freed all who cower through life, scared to death of death" (Hebrews 2:14-15, MSG). Matthew Henry's complete commentary on Hebrews 2:14-15 says that because of what Christ has done for us on the Cross, "Death is not only a conquered enemy, but a reconciled friend...not now in the hand of Satan, but in the hand of Christ—not Satan's servant, but Christ's servant—has not hell following it, but heaven to all who are in Christ."
Later that evening I wrote the following entry in my journal: "Jesus Christ has conquered death. His purpose in coming was to deliver me and to set me completely free. He is trustworthy and He is in control. I pray for grace and the will to look steadfastly at Him so that I will not be afraid."
Today's Scripture: "Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts, 'Be strong, do not fear; your God will come,'" (Isaiah 35:3-4a).
*not his real name
Questions and Answers
When my mother was first diagnosed with Alzheimer's disease, friends who had been in similar situations stepped forward to offer us prayer and support. Like a bucket brigade formed to quench fires of grief and fear, loving hands passed to us the knowledge they had gained during their own struggles with this disease. I have become a member of the brigade, and it has been my privilege to be able to help others toward solutions to their own challenges as they cope with the slow loss of a loved one. Here are some of the questions I have been asked, and I share answers from my own perspective and experience. Every situation is unique, and this is not meant to be a guide for other families. Seek out expert help.
Q: “What factors caused you to choose to have your mother come to live with you rather than to place her in an assisted living situation or a rest home?”
A: “We truly had an unusual set of circumstances. I am an only child, and so the decision could be made quickly, without the collaboration that is appropriate when several families are affected by any decision that is made. My father had left a retirement fund that was just the right amount to pay for building an addition onto our home so that Mom could have a space of her own, affording our family a degree of privacy. My mother was not delusional or paranoid, and she handed over her finances to me with an attitude that changed quickly from trepidation to relief. She disliked physical exercise and so was not prone to wander away. Her income was adequate to allow her to pay me a small salary to care for her, and this in turn allowed me to cut my teaching job to half time without financial strain. We had not planned for these circumstances, beyond the fact that my father had been diligent to save money from each of his hard-earned paychecks. I always want to emphasize the fact that the term "caregiver" applies to any individual who feels ties of love and responsibility toward an individual who is infirm. The daughter who visits her mother weekly and manages her mom's finances is a caregiver. The son who lives across the country but calls the rest home frequently to ask for reports on a parent's condition is a caregiver. Every situation is unique, but God is Sovereign over them all.”
Q: “Does your mother have long term care insurance?”
A: “No. Mother did not apply for long term care insurance until she was 77 years old, and then she was turned down. The long term care policies we researched would have paid for three years in a rest home. Some had provision for payment for in-home care. You have to find a good insurance agent and read the fine print.”
Q: “What was the sequence of actions you took when you suspected your mother was ill?”
A:
1.“I requested prayer from our pastor and from several trusted friends.
2.“We visited our physician. Several tests were necessary to rule out other causes of dementia.
3.“My mother began treatment with two medications designed specifically to treat Alzheimer's disease. Alzheimer's and depression often go hand in hand, and Mom benefited greatly from a prescription anti-depressant as well. She receives these three medications plus a few vitamins and nutritional supplements daily. Information about Alzheimer's medications is easy to obtain online, at your library, or from the Alzheimer's Association. Do your homework and see your doctor. My mother experienced great improvement after initial treatment was begun and has maintained that higher level of functioning for over four years at this writing.
4.“I received the benefit of guidance from friends who have faced similar situations.
5.“I attended several meetings of our local chapter of the Alzheimer's Association, including one session called, "The ABC's of Alzheimer's Care."
6.“We visited a lawyer who is an elder law expert. She was so helpful to us. With her knowledge we were able to make our plans to care for Mother ourselves in a way that would satisfy Medicaid's requirements in the case of a spend-down of Mother's assets once rest home care becomes necessary.
7.“I obtained durable power of attorney for health care and financial decisions for my mother. This is a legal process and requires an attorney. It is vital for you to be able to make decisions for your loved ones at the point at which they can no longer decide for themselves.
8.“We purchased a prepaid burial plan. This needed to be done because of the possibility that it would become necessary to "spend down" Mother's estate for rest home care, should she require it. I've since read that great caution is needed when purchasing prepaid plans and that there are other ways of putting money aside for this need that may be more prudent. Consult your lawyer with this concern. We live in a small town and our funeral director is a former Christian Youth Fellowship student of my Mom's. I'm comfortable with our solution.”
Q: “Is there anything you wish you had done differently?”
A: “Oh, of course. The mistakes I regret most came from the difficulty I had in adjusting my expectations of Mom in order to accommodate her decreasing level of functioning. For example, when she was first diagnosed I somehow thought she could self-administer her medications, if only I would sort them into day of the week containers for her. Of course, she could not. She was ashamed and she hid the pills from me. I wish that incidents such as this had not made me angry, and I wish I had not scolded her as though she were a child.
“When a loved one is diagnosed with Alzheimer's disease we are given the facts. We learn that personality changes will occur. Paranoia, a self-centered perspective, and temper outbursts are all listed as possible symptoms as the disease progresses. On the part of a caregiver who is a close relative of the patient, there is an intellectual understanding of these facts; but it is difficult to transfer that ‘in the head' understanding to the heart. The tendency is to respond to the loved one based on the relationship that existed before dementia occurred. The caregiver must learn to respond to negative behaviors from a clinical and not an emotional perspective. It is a difficult transition, made easier by the recognition that although the rules of the relationship change, love remains.
“And of course, any trial is made more difficult when we give way to fear. God always has a plan. If I could relive the past few years with more trust and less fear, everyone would benefit!”
Q: “What has been the biggest challenge of having your mother in your home?”
A “By far the biggest challenge I've faced thus far is the emotional trauma of becoming my caregiver's caregiver! I've written about this transition throughout this book, but I must reemphasize the fact that if this transition is not acknowledged and prayed through, resentment and emotional detachment will result.”
Q: “Would you follow this same path again?”
A: “Absolutely, because this path was engineered for us by the Lord. I am so grateful to God for His power, His presence, and His provision for us during this time.”
Q: “What factors caused you to choose to have your mother come to live with you rather than to place her in an assisted living situation or a rest home?”
A: “We truly had an unusual set of circumstances. I am an only child, and so the decision could be made quickly, without the collaboration that is appropriate when several families are affected by any decision that is made. My father had left a retirement fund that was just the right amount to pay for building an addition onto our home so that Mom could have a space of her own, affording our family a degree of privacy. My mother was not delusional or paranoid, and she handed over her finances to me with an attitude that changed quickly from trepidation to relief. She disliked physical exercise and so was not prone to wander away. Her income was adequate to allow her to pay me a small salary to care for her, and this in turn allowed me to cut my teaching job to half time without financial strain. We had not planned for these circumstances, beyond the fact that my father had been diligent to save money from each of his hard-earned paychecks. I always want to emphasize the fact that the term "caregiver" applies to any individual who feels ties of love and responsibility toward an individual who is infirm. The daughter who visits her mother weekly and manages her mom's finances is a caregiver. The son who lives across the country but calls the rest home frequently to ask for reports on a parent's condition is a caregiver. Every situation is unique, but God is Sovereign over them all.”
Q: “Does your mother have long term care insurance?”
A: “No. Mother did not apply for long term care insurance until she was 77 years old, and then she was turned down. The long term care policies we researched would have paid for three years in a rest home. Some had provision for payment for in-home care. You have to find a good insurance agent and read the fine print.”
Q: “What was the sequence of actions you took when you suspected your mother was ill?”
A:
1.“I requested prayer from our pastor and from several trusted friends.
2.“We visited our physician. Several tests were necessary to rule out other causes of dementia.
3.“My mother began treatment with two medications designed specifically to treat Alzheimer's disease. Alzheimer's and depression often go hand in hand, and Mom benefited greatly from a prescription anti-depressant as well. She receives these three medications plus a few vitamins and nutritional supplements daily. Information about Alzheimer's medications is easy to obtain online, at your library, or from the Alzheimer's Association. Do your homework and see your doctor. My mother experienced great improvement after initial treatment was begun and has maintained that higher level of functioning for over four years at this writing.
4.“I received the benefit of guidance from friends who have faced similar situations.
5.“I attended several meetings of our local chapter of the Alzheimer's Association, including one session called, "The ABC's of Alzheimer's Care."
6.“We visited a lawyer who is an elder law expert. She was so helpful to us. With her knowledge we were able to make our plans to care for Mother ourselves in a way that would satisfy Medicaid's requirements in the case of a spend-down of Mother's assets once rest home care becomes necessary.
7.“I obtained durable power of attorney for health care and financial decisions for my mother. This is a legal process and requires an attorney. It is vital for you to be able to make decisions for your loved ones at the point at which they can no longer decide for themselves.
8.“We purchased a prepaid burial plan. This needed to be done because of the possibility that it would become necessary to "spend down" Mother's estate for rest home care, should she require it. I've since read that great caution is needed when purchasing prepaid plans and that there are other ways of putting money aside for this need that may be more prudent. Consult your lawyer with this concern. We live in a small town and our funeral director is a former Christian Youth Fellowship student of my Mom's. I'm comfortable with our solution.”
Q: “Is there anything you wish you had done differently?”
A: “Oh, of course. The mistakes I regret most came from the difficulty I had in adjusting my expectations of Mom in order to accommodate her decreasing level of functioning. For example, when she was first diagnosed I somehow thought she could self-administer her medications, if only I would sort them into day of the week containers for her. Of course, she could not. She was ashamed and she hid the pills from me. I wish that incidents such as this had not made me angry, and I wish I had not scolded her as though she were a child.
“When a loved one is diagnosed with Alzheimer's disease we are given the facts. We learn that personality changes will occur. Paranoia, a self-centered perspective, and temper outbursts are all listed as possible symptoms as the disease progresses. On the part of a caregiver who is a close relative of the patient, there is an intellectual understanding of these facts; but it is difficult to transfer that ‘in the head' understanding to the heart. The tendency is to respond to the loved one based on the relationship that existed before dementia occurred. The caregiver must learn to respond to negative behaviors from a clinical and not an emotional perspective. It is a difficult transition, made easier by the recognition that although the rules of the relationship change, love remains.
“And of course, any trial is made more difficult when we give way to fear. God always has a plan. If I could relive the past few years with more trust and less fear, everyone would benefit!”
Q: “What has been the biggest challenge of having your mother in your home?”
A “By far the biggest challenge I've faced thus far is the emotional trauma of becoming my caregiver's caregiver! I've written about this transition throughout this book, but I must reemphasize the fact that if this transition is not acknowledged and prayed through, resentment and emotional detachment will result.”
Q: “Would you follow this same path again?”
A: “Absolutely, because this path was engineered for us by the Lord. I am so grateful to God for His power, His presence, and His provision for us during this time.”
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