Difficulties

Perhaps I don't write enough about the difficult aspects of caregiving.

With God's guidance I've set up rules for myself to follow regarding anything I write about Mom. First of all I must honor her as my mother. The Lord has made it clear to me that the strong must serve the weak, and my mother is weakened by disease (see Romans 15:1). Jesus washed feet and didn't respond to abusive words; that's because He knew His own strength. His rule was that He was governed by God's will and God's love, and this rule must govern me lest I fall into disobedience to the most Holy God.

However, other caregivers might surmise there is nothing for them to gain from reading about an experience that's all sunshine and roses as compared to their own difficult journeys. And, since God's power is made perfect in weakness, I won't hold back from writing some humiliating truths about my own weakness today.

Here is my confession: In five years of caregiving, I have never adapted to the task of bathing my mother. She is in stage 5 of Alzheimer's disease with just a few beginning characteristics of stage 6 (click here for stages of Alzheimer's disease from the Alzheimer's Association). And so, if I lay out washcloths, soap, and clothing; she is still able to wash and dress on her own each day. Based on her behavior when I help her shower, I think she probably errs on the side of repeating behaviors (such as washing her face several times) rather than omitting them altogether, and so she is very clean.

However, she is unable to shower by herself, and so Saturday is bath day. Using words Ma Ingalls might have uttered, I playfully tell Mom, "You've got to go in all over at least once a week. Anything less is just not what decent folks would do."

I dread bath day, and in five years my angst has not decreased at all. In fact, in some ways it's gotten worse. I have always had a sensitive nose and a stomach that responds to my emotions, but the past few weeks the merest whiff of any normal body odors not my own has caused my stomach to churn. Last week on bath day I became so nauseated that I left my mother perched on the shower seat and fled from the room to phone a friend to pray for me. The fact that I was almost immediately better when she began to pray reveals that this is a spiritual battle. This week in the middle of the procedures, I sent a panicked text message to my daughter for prayer because I had become nauseated and emotionally upset. My knees were weak and actually buckled at one point, causing me to lose my balance. I feel ridiculous confessing all this.

Why don't I find someone to help me, you ask? My Mom does not yet qualify for Medicaid and I was quoted a price of nearly $150 when I attempted to find someone to hire to help . But beyond the expense is the fact that the thought of hiring a stranger to bathe Mom horrifies me. I understand her disease and her responses, I know her, and I love her. For the most part, I've learned to respond in love when she snaps at me out of frustration or weariness. If she were rude to a stranger during the bathing process when she is so vulnerable, what would that person's response be? At the very least most people in the world would respond in kind. I hate the thought of her being cowed into submission by someone unfamiliar to her. I feel so protective of her poor old body. While Mom is aware of who I am and still feels modest or afraid around strangers, I believe that this bathing ordeal is an anointed task that I am to perform. It's my job.

The Lord has shown me how to cope effectively. When I have an intercessor I am able to proceed as though I were a stronger person than I am.

The point of this entry today is the importance of humbling oneself to ask for prayer. If a caregiving task is difficult or even if it is abhorrent; this doesn't mean that we as caregivers need to be excused from the unpleasant task. We can ask God to for strength. We can ask friends to pray.

Scripture: "Dear brothers and sisters, pray for us" (1 Thessalonians 5:25, New Living Translation).

Comforting With the Comfort I've Received

For two years I have been praying that other caregivers will benefit from the comfort the Lord provided me as Mom and I began our journey through Alzheimer's.

I began the writings that would eventually become a book manuscript in 2004, the year Mom was diagnosed with Alzheimer's disease. Those first journal entries were therapeutic and necessary for my emotional health as I transitioned into the role or caregiver. It was spiritually cathartic to fight out those battles through writing with the Lord at my side; analogous to laboring and giving birth. However, each subsequent reading is like laboring to deliver the same child again; rather than allowing the memory of the pain of the travail to fade, I am forced to relive it. This is one reason that I was so exhausted at the beginning of summer. I’d completed a marathon rereading of the manuscript, necessitated by the time delay caused by the economic crisis and my publisher’s subsequent indecision over whether to go ahead with the book. When they decided to publish the book in fall of 2009, I had about three days to zip through the manuscript and make needed changes, and it was beyond wearing, beyond exhausting; it was devastating emotionally. I wrote the book one day at a time, one pain at a time, one issue at a time, but this desperate reliving of the travail of moving into the role of caregiver was like two year's labor being forced into three days time; in a word, awful. And now I’m beginning another review of the manuscript in order to prepare for a web radio interview in late November. I can go slowly and prayerfully this time through.

It is a part of my ministry on behalf of other caregivers to offer myself to this labor once more. The Lord has allowed my caregiving burden to be relatively light; I have not thus far suffered the 24/7 physical labor that occurs for some caregivers. My mom’s particular set of Alzheimer's symptoms have just happened to be things that generally made it easier for me to take care of her rather than more difficult. I have been so blessed, and it seems to me that something is expected of me in return. As I suffered through each phase of the emotional toll of caregiving, I had the luxury of time to bring those issues before the Lord and to record His guidance. It is my prayer that people who do not have the time to wrestle these issues out before the Lord can benefit from the fruits of my labor. I believe that the Lord wants to bring rich comfort and guidance to those who are undergoing that terribly difficult transition into the role of caregiver for a loved one who has dementia. It’s an especially difficult life change to accomplish when there is a role reversal; when the patient is the one who in the past fulfilled the role of caregiver in the relationship.

I have been posting at the Alzheimer's Association's message boards. The boards offer a wonderful opportunity to exchange helpful information and to share joys and sorrows, but reading other people's stories has broken my heart. I pray that my book will help those poor caregivers who need encouragement and hope so desperately. By God's grace and through His guidance I have been given real help for the emotional and spiritual suffering caused when a loved one is fading into dementia. Pray with me that My Mom Has Alzheimer's: Inspiration and Help for Caregivers reaches those who need it.

Scripture: Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows" (2 Corinthians 1:3-5).

Whispering Hope

I delivered Mom's evening meds at 9:00 this evening, as usual. I was startled when I offered the little cup of pills only to have her snatch it out of my hand in one angry movement. She spat out, "Did you ever just want to have a mental fit?"

I was so surprised that at first I just froze and stared at her with my hand still outstretched, but then caregiving instincts surfaced and I stepped back, appraising her carefully from head to toe. Nothing seemed amiss other than the angry expression on her face.

Her voice softened and she said, "Oh, I don't know if I can make you understand." She took a deep breath and closed her eyes. "It's a feeling of being useless. You just ask yourself, 'What good am I?'" She opened her eyes, downed her pills, and set the container aside. Matter of factly she said, "I'm questioning the Lord and that's a sin. Besides, I shouldn't say anything because no one cares or wants to take the time to understand."

I sat down. "The Lord is using you to bless us," I said. "Having you here has allowed me to work just half time because you pay me a salary. I love my job now. And just think, if you hadn't gotten Alzheimer's, we'd probably never have built this beautiful addition onto John's and my home. We'll enjoy this for the rest of our lives, thanks to you and Dad."

Mom looked directly at me and then, with no indication of having processed anything I'd said, repeated almost verbatim the same speech she'd just finished about feeling useless and how no one cared or wanted to take the time to understand. I realized she was looping (my coined term for the way she will sometimes repeat the same series of comments over and over with just a few seconds pause between) and to break the loop I said, "I think you do a great job Mom. I'm going to bed now, good night." And I went out the door. As I left I looked back at her. She was shaking her head and rolling her eyes--I'd proven her point. Her perception was that I didn't want to take the time to understand. I'm sure that if I'd remained in the room she would have repeated the same information again. Perhaps I should have tried harder to break the loop, but I've learned through experience that this is difficult to accomplish, especially in the late evening.

I was shaken because for a moment I'd let my caregiving persona slip and had spoken to Mom as I would have in the past, when a true reciprocal conversation was possible. My dad's been dead 12 years but I've never forgotten his face, or the way his hands looked, or how he grinned and wore his hard hat at a jaunty tilt on the side of his head. But tonight I couldn't remember my mother as she used to be. That woman has been overshadowed by the mom I now have, the one who had just hurt my feelings by not hearing or understanding me when I tried to share my heart with her in order to comfort her.

The Lord directed my thoughts to a scene from The Lord of the Rings: The Return of the King. Samwise is attempting to refresh Frodo's heart by reminding him of the beauty of their home, the Shire. "Can you remember, Mr. Frodo?" asks the faithful Sam. But Frodo, injured by the journey and carrying a heavy burden, could not remember. Later, after the ring is destroyed, Frodo says, "Sam, I remember now..."

Tonight I felt frightened of forgetting the wonderful mother I once had. I feared that this travail through Alzheimer's disease would blot out my memories of who my mother once was because of who she has become. I believe the Lord has told me tonight that once the caregiving burden is gone, that my memories of my mom as she was in the past will be restored. A further and more glorious truth is that once Mom's burden of Alzheimer's disease is removed and she is safe at home in the Lord, her memory will be restored (see Philippians 3:21). This Alzheimer's burden is temporary.

There's joy and rest to be experienced here and now, in the midst of this journey, and in the Lord both my mother and I have hope for tomorrow as well.

Scripture: "...hope we have as an anchor for the soul, both sure and steadfast" (Hebrews 6:19 KJV).

Lead (as in the heavy metal) Balloons

I have high cholesterol and am low thyroid. Over the past ten weeks I have struggled mightily to lose a mere five pounds; a paltry number that my younger, healthier body would have released in just a couple of weeks' time and with less effort. This morning I woke up, read the first two chapters of Joshua, and determined that through self-discipline and obedience to the Lord that I was going to prepare to cross the Jordan into the Promised Land of freedom from chubbiness.

I poured a bowl of high fiber cereal and then went into Mom's room for a cup of coffee from our communal pot. She was in bed, covered cozily with a quilt, the cat curled at her feet.

"I would like a sausage and egg sandwich please, on toast, light on the mayo," she said.

This lead balloon didn't make it over my head--it bonked me smack between the eyes. Reeling with the unfairness of the fact that my 85-year-old mother does not harbor a whit of guilt over her extra pounds nor despite her fondness for fried foods does she have high cholesterol, I responded with silence and attempted to tiptoe from the room, pretending not to have heard her request. I'd just reached the door when she said, "Hello? Did you hear me?" And she repeated her desire for a forbidden-to-me (and imprudent for her) cholesterol laden breakfast.

"We have no sausage," I lied. To further clarify I added, "You always get your own breakfast." And then, unwisely, "It's the only meal you get on your own."

She ignored my jibe regarding her lack of self-sufficiency, but there was a dangerous edge to her voice as she said incredulously (as to the waitress in a second rate cafe), "You don't have sausage? Well may I at least have an egg?"

What sort of a person would deny her aging mother an egg?

At this juncture I departed completely from wise caregiving practice. I did not tell a kind-hearted therapeutic lie (I am so sorry we have no eggs or sausage because of my special diet, but when I go to the store I'll buy you some Jimmy Dean sausage biscuits). Instead, I attempted to elicit her maternal sympathy. I explained about my high cholesterol, and how I was working hard to lose weight and that it would be difficult to prepare a sizzling fried egg topped with a fragrant sausage patty when I could not partake myself.

In long-suffering tones she replied, "Forget it. I don't know why I ever ask to have something I want. I'll just have toast." (a dry crust of bread, a bowl of stagnant water)...

I can never beat my mother on her own playing field. Laden with guilt I nearly ran into the kitchen, found the package of sausage patties in the freezer, and prepared one for her. I took it in and left it on her counter, where she will find it when she makes her morning toast.

But she by golly didn't get an egg.

Conversational Challenges

Talking with someone who has Alzheimer's disease can be a challenge. For example, here is an exchange that took place between my mother and me today:

(I hear Mom sneezing and open her apartment door)
Me: (Cheerfully) I hear someone sneezing in here!
Mom: (Indignantly) Well, it's cold in here.
Me: (Somewhat taken aback) No, I just meant, I heard you sneezing...
Mom: Well, it's cold.
Me: (Trying to change the subject) I've just always thought its cute the way you sneeze, with that little scream at the end, and now I have unintentionally started sneezing the same way.
Mom: (Huffy) Well I don't do it on purpose.
Me: (trying to make peace) I'll adjust the air conditioner to make it warmer.
Mom: (Dismissing me) I'm not cold. (Returns to reading her book.)

Now, two things should be apparent from this entry: 1) Caregivers must keep a sense of humor, and 2) Caregivers must not hold Alzheimer's patients accountable for the rules of polite conversational interchanges that govern the rest of the world.

In other words, don't hold an Alzheimer's patient responsible for behaviors she can't help.

Easier said than done, but this time I think I managed.

Enjoying Mom Today

I've been struggling to cope with feelings of exhaustion, but in the midst of too little sleep and too much activity, an odd thing has happened. I've become more able to receive my mother's sweet expressions of gratitude toward me, and her constant affirmation that I am pretty.

I'm 55 years old, a little bit overweight, and when I head into my Mom's room to clean her bathroom or gather her laundry I'm rarely dressed to impress. Nevertheless, I am pretty to my mother, and she often tells me so. Over the years since Mom came to live with us, I've often had to hide irritation when she compliments me in this way. I've come to understand that this inability to receive her love and approval is grounded in grief. When Mom expresses love to me I am unable to keep an emotional distance from her, and I feel the sharp pain of impending loss. I can't cope for long with the terrible sorrow that bubbles up to the surface when my mother beams love in my direction; I'm losing her, what will I do without her?

But in the same way that my toddler grandson has no time for a hug unless he is tired or sad, my exhaustion this week has allowed me to be more open to the solace of Mom's loving words. Tonight I'm praying for the ability to receive my mother's loving words and to express love to her in return. I pray for the ability to enjoy Mom while she is here, and to trust the Lord for the time when she will no longer be with me.

I can't practice ahead of time for the sorrow of living in a world that does not have my mother in it. The Lord hasn't yet equipped me for that loss because that time has not come.

Lord help me to enjoy Mom today and to trust You for tomorrow.