Letters From Madelyn: Chronicles of a Caregiver

By Elaine K. Sanchez

Madelyn Kubin was a 70-year-old Kansas farm wife. She appeared to be fragile because of her thinning white hair, macular degeneration, osteoporosis, congestive heart failure, and severe hearing loss. But when her husband Quentin suffered a debilitating stroke, she was forced to summon all of her physical, emotional, and spiritual strengths in order to care for him at home. Madelyn managed her isolation, loneliness, and stress by going to her computer, disengaging her emotional monitor, and writing letters to her daughter Elaine.

Madelyn’s story of faith, courage, and love is told through her unflinchingly honest and surprisingly funny letters written in real time over the course of six-and-a-half years. Although she prayed every day that she would be a willing channel for God’s love and compassion, there were plenty of days she felt like telling God to go find himself another servant.

Madelyn wrote unabashedly about her anger, guilt, depression, and grief. When Quentin displayed dementia-related inappropriate sexual behavior, Madelyn eventually learned how to handle it with grace and humor. She was an example of how it is possible, even in the very worst end-of-life situations, to experience mental and spiritual growth.

• Language: English
• Publisher: WriteLife Publishing
• Release date: May 17, 2016
• ISBN: 9781608081677

Book preview

Prologue

On October 30, 1993, I picked up the ringing phone. It was my mother. She said, Your father’s had a stroke.

Knowing this was his worst fear, I asked, How bad is it?

She said, It’s really bad. The right side of his face is all lopsided and droopy. He’s completely lost the use of his right hand. He’s having a terrible time walking, and when he talks, I can’t understand a word he says.

What’s the prognosis?

It’s not good. The doctor said he also has prostate cancer, and they think maybe the cancer’s already spread to his brain.

Oh, Mom, I said, sinking into the nearest chair. I’m so sorry. What can I do?

Her voice broke. Could you please come home?

At that time I was a single mom with three teenaged children. My son Eric was a high school senior, and that Friday night was the final football game of the season. It was Mom’s Night. All of the mothers were to go out onto the field at the beginning of the game, and our sons were to hand each of us a single red rose.

It was also the last time Eric and his brother Robert, who was a junior, would ever play for the same team on the same night on the same field. In addition, we were planning to celebrate my daughter Annie’s fifteenth birthday.

As I thought about how badly I wanted to be with my children that weekend, I heard myself saying, Of course. I’ll pack tonight and get on the road first thing tomorrow.

I left Colorado Springs early the next morning. As I drove the 450 miles across the barren plains of eastern Colorado and western Kansas, I had plenty of time to think. Even so, I simply could not grasp the idea that my dad, who appeared to be as healthy and robust as any seventy-five-year-old man on the planet, could be brought down by a stroke.

He was still farming. Men in our family didn’t get sick or die in their seventies. On my Uncle John’s ninety-third birthday, he bought a new suit. He told the clerk he was afraid he’d wear out the pants before the jacket, so he ordered two pair of identical trousers. The clerk thought that was wildly optimistic. The people in our family thought it just made good sense. I expected Dad to have another twenty years, at least.

Had it been Dad who called and said something had happened to my mother, I would have been devastated, but I wouldn’t have been surprised. Although she was only seventy, her poor body was nearly worn out. She had a little cottony puff of white hair that barely concealed her scalp. She was losing her vision due to macular degeneration. Her back was hunched from osteoporosis. She had a scar that started at her throat and extended to her breastbone as a result of open heart surgery, from which she had not fully recovered. She didn’t sleep at night because of her restless leg syndrome, but the thing that was frustrating her beyond all belief was the severe hearing loss that had been brought on as a result of the medication she was taking for her heart.

And now she was going to become Dad’s full-time caregiver. It just wasn’t right!

But then a lot of things weren’t right in my life, either. I was forty-two and divorced. My ex-husband hadn’t held a steady job for a long time, and he didn’t pay child support. I was still reeling from the loss of my job as general sales manager for the NBC television affiliate in Colorado Springs, Colorado.

Six weeks earlier, my boss had walked into my office and closed the door. He sat down across from me and said, You’ve got a problem.

I said, I do?

He said, I don’t like you anymore. You push yourself too hard. You push your employees too hard, and you scare people. Get your purse and get out.

I was stunned. I was just four days away from closing on the sale of my 4,500 square foot home on a golf course and moving into a new, smaller town home, which I was scheduled to close on the next day. I was also driving a company car. So in that brief and brutal encounter, I not only lost my job, I also lost my home and my car.

My confidence was deeply shaken. My future was uncertain. My children—who were also unsettled, upset, and confused—were pushing every limit, and now my dad was dying. Naively, I thought things couldn’t get any worse.

After eight hours on the road, I finally reached McPherson, a town of about 14,000 people in central Kansas. I drove straight to the hospital. I was told I’d find Dad in Rehab. When I entered the room, I was stunned to realize that the fragile old man being supported by the physical therapist on a slow-moving treadmill was my dad. He was wearing tennis shoes and forest-green sweats bunched up and twisted at the waist. I’d never seen him in clothes like that. When he saw me, he tried to smile. His mouth was lopsided, and his brown eyes, normally twinkling with mischief and laughter, were abnormally round and wide. He looked scared and helpless—like an animal caught in a trap.

I looked at my mother and wondered how she was going to manage what lay ahead. My parents lived on a farm six miles northwest of McPherson. Their primary asset was 320 acres of land, half of which was homesteaded farm ground that had been in Dad’s family since the late 1800s. There was no long-term-care insurance and only a few thousand dollars in savings.

My dad loved my mother more than anything on earth, except for the land. If she sold it and put him into long-term care, she would not only be violating a sacred trust, she would also be putting my brother Larry, who farmed with Dad, out of business. If Dad lived for a long time, it could take all of the money to pay for his care, and it was possible that she could end up being destitute.

I don’t remember how long I stayed in McPherson. It couldn’t have been more than three or four days. I did whatever I could to help Mom and encourage Dad, and then I had to go back to Colorado to rebuild my own shattered life. In the first few weeks after I lost my job, I’d been forced to make a lot of quick decisions, including finding a house to rent, buying a car, landing a job, and taking the next step with a man in our relatively new relationship. Some of my decisions were good—a lot were not.

I was operating in a fog of confusion and self-doubt. I didn’t understand why my life had unraveled so completely, and I wasn’t sure I’d ever be able to piece it back together; but at least I still had choices.

Mom did not. Dad’s stroke ended her freedom. There were days when she could escape for a few hours to run errands or attend a meeting, but for the most part she was held captive for the next six and a half years.

She developed a multitude of strategies that helped her cope with her isolation and emotional stress. She believed in a loving and benevolent God. She frequently visited the library and checked out stacks of books that provided her with information, inspiration, and a temporary escape from her duties as a caregiver. And she wrote letters to me.

She would often go to her wildly cluttered desk, disengage her emotional monitor, and let her flingers fly across the keyboard of her word processor as she described everything she was experiencing and exactly how she felt about it.

A typical letter would be five to ten pages in length, typed, single-spaced, and printed on both sides of the page. To me, each one was like an episode of M*A*S*H. There was always something that made me laugh, something that made me cry, and something that proved how it is possible to find peace and joy in the midst of crisis and tragedy.

In 2004, I was asked to speak at our church on Mother’s Day about mother-daughter relationships. I decided the best way to describe Mom was in her own words, so I went to the garage and took down a cardboard moving box my husband had labeled, Letters from Madelyn. I read an excerpt from one letter and told a few stories. Afterward, people came up to me and exclaimed, You have to write a book!

I started on it the next day.

In the beginning, I had some reservations about sharing such a personal story, but when I came across the following paragraph, I knew Mom had given me her permission:

She wrote, I wish I had been keeping a journal all these years. It would be interesting now to see the stages I have gone through. It has taken many years to get to this place of detached peace and acceptance. Thank God for this place! I also think my experiences might be helpful to other people who are in a similar situation.

By publishing these letters, I hope to honor my mother’s memory and fulfill her wish of helping others who find themselves struggling to cope with the emotional stress of caring for a loved one who is a stroke survivor or suffering with any type of long-term progressive and degenerative disease.

Chapter 1

1994

January 6, 1994

Dear Elaine,

You will be glad to know that my chest pains have stopped. They got pretty bad right after Quentin had the stroke. I was beginning to wonder if I should go to the doctor, but I didn’t want Quentin to know how much trouble I was having because he worries about the extra load I’m carrying.

One night I was reading an old Daily Word¹ and I found the affirmation, God is healing all now. Thank you, God. That really appealed to me. I started repeating it to myself over and over and my pains stopped.

Day before yesterday I couldn’t stop crying. The last two months just came to a head. I’d had some chest pains during the day and a few in the night, but they have gone away again. It is such a relief to be free from them. I do indeed Thank God.

It was a year ago today that we left for Florida. Kansas was covered with ice that night. It is supposed to get real cold here tonight—and I believe the weather forecasters are right—at 4:00 p.m. it was 25 degrees. We haven’t been out of the house all day.

Quentin is still feeling sad about his brother. He said he didn’t want to go over to the house right after Dale died because he thought I would be too upset. I finally said that I just had to go. We got over to Marge’s house and Quentin cried real hard. He was real embarrassed that he cried; but it was all right, it endeared him to Marge. He was afraid to go to the funeral. He got through it okay, but he looked pretty tough. It was a beautiful service. There were lots of flowers, and there were even people in the balcony.

The house you rented sounds dreadful, and it must be hard for the kids since they’ve always lived in a beautiful home, but I’m sure you won’t have to stay there too long. I’m real proud of you for what you are doing. So many people blame everyone else for their troubles and problems, and they never go to the effort to look within to see what needs to be changed. You will come out of this stronger, smarter, and more compassionate rather than bitter and defeated.

The new job sounds interesting. Have to admit I don’t know much about the corporate hospitality business. I can’t imagine how you’ll persuade companies to spend so much money on taking employees or clients to baseball games, but I never understood how you got people to spend so much on television advertising either. If the Rockies turn out to be as popular as the Broncos, you should do real well. And even though the commute to Denver makes your days awfully long, it’s good that you’re taking the time to think about the things you need to do to change your life.

I’ve been thinking about your kids a lot and I think the dilemma is very predictable. They don’t like having to share you with someone else, and I wouldn’t be surprised if they don’t resent someone else taking Daddy’s place. It must be very hard for them to get used to John living in your house. You are raising kids in a very difficult time and they are a very difficult age. I don’t envy you, and I pray for all of you every night.

We are looking forward to seeing you again, but don’t come until your situation is under control. Quentin is still having so much trouble breathing, and the flu or a virus would devastate him.

He still gets nervous very easy, but is doing better. He doesn’t like to have me talk about his sickness, or anyone else’s for that matter. That’s the reason I’m writing. So when you do come home we can spend our time on much more interesting subjects. I get real lonesome to see people and to have a good conversation.

Love,

Mom

1 Daily Word is a magazine published by Unity—a spiritual healing movement with close ties to Christian Science and New Thought. Daily Word prints daily prayer messages, affirmations, and spiritual poetry for people of all faiths.

February 6, 1994

Dear Elaine,

I feel so blah today. I have written to my sister Jean and that’s just about my total accomplishment, except for making the beds, fixing three meals, and washing a load of clothes. I did help Quentin with his shower this morning. Yesterday I managed to get the magazine racks and refrigerator cleaned and felt good about the day.

I went to a home in McPherson that had a sign in front saying Kirby Vacuum Cleaner supplies were available. I was desperate for dirt bags, so we went there. I have never in my life seen such a mess. I went out to the car and told your dad that I had seen someone who was messier than me. It didn’t comfort me—it scared me. Decided I had better get everything straightened out and develop some habits that will be helpful as I get older. Can’t believe I need to clean my closet again. I did it only six years ago!

I will sure be glad when it warms up so we can get out and walk. Quentin isn’t walking nearly as well as he did for a while. He has had some trouble with his rear end, so he doesn’t feel like riding the bicycle. He was all broken out and has had trouble sleeping because of his itching skin. We think the chlorine in the swimming pool caused the irritation. We haven’t been to the Y since the first of December, but his skin is just about healed now.

It’s harder all the time for him to get out of bed. Thank goodness Greg came home and installed the ceiling hoist. I honestly don’t know what we would do if we didn’t have it. Last week I happened to be in the bedroom several times when Quentin was struggling, and I helped him up with the hoist. Then one night, I had severe chest pains. It used to never scare me, but it’s hard to not get real concerned now, as I am needed very much. I sat in a chair and worked at relaxing. I have a little ball with knobs on it that is great for using reflexology on hands. I had read that rubbing the end of the little finger on the left hand has stopped lots of chest pains, so I did that, and I put on a nitro patch. The pains didn’t last too long, but I did learn that I just can’t be pulling him up all the time.

When he is tired at night, he breathes as if he’s run up about three flights of stairs. I asked one time if the trouble came from his head or his chest. He said it was his chest. I asked where it hurt, and he said it went deep. He asked me one time to pray that he would die from heart trouble. I can’t bring myself to do that, but I hope when the time comes for him to make his transition that it will be fast. I’m so glad he’s not in pain. He has some discomfort at times, but he is not in terrible pain.

Sometimes I feel like I’m toilet training a little child—I’m always either asking if he needs to use the bathroom or I’m telling him to do so. Sometimes when he goes to lie down for a nap during the daytime, he won’t use the bathroom. In just a little bit he’ll need to go, but he can’t get up in time. So now every time he goes to lie down, I tell him to go to the bathroom first. When he says he doesn’t need to, I tell him to go anyhow. When we go to town, we take the urinal along, as he quite often has to go and there isn’t a bathroom. He has a lot better control now that I’ve been questioning him about every two hours. I have to be careful that I don’t show irritation with him.

The one place where I don’t give in to him is when I want to sit up and read at night. He never wanted me to do that when he was well. Now he says he can’t sleep if the light is on, and the noise of the turning pages bothers him. He never has any trouble sleeping in the daytime. The dishwasher can be going, the TV can be on, and the telephone can be ringing, and he can sleep without any problem. I told him last night to not worry if he couldn’t sleep while I was reading, because he wouldn’t have any trouble when it’s daytime and I’m working. I need some time for myself, and if he can’t sleep, he will just have to stay awake.

It is not a fun-filled life for either one of us. Fortunately, there are still a lot of things I can do. He can only read, sleep, or watch TV.

I enjoyed talking to Eric the other night. He said his dad hopes to move them out of Grandma Jane’s basement and into their own apartment soon. Even though she loves them all, I can’t imagine she’s enjoying having Craig and three kids living with her. I know I wouldn’t want them!

I think Eric can do very well as a waiter if he doesn’t get too unhappy with his customers. If he makes enough money in tips, he’ll probably learn to be patient. I know a young woman in Chicago who is working as a waitress. She got a degree in sociology but couldn’t get a job in that field. She’s doing real well financially. Her mother said she likes to wait on Jews and homosexuals, as they tip very generously.

I’m enclosing the letter I sent to Eric in his birthday card. I hope he’ll read it and think about it.

Lots of Love,

Mom

January 30, 1994

Dear Eric,

As I think back eighteen years to the day you were born, the tears are streaming down my face. I have told you before how happy and proud everyone was. I hope we can all feel that way again soon. I hope you will read this letter all the way through. If you can’t now, please save it and read it another time.

As I told you yesterday, I am so sorry about what has happened. It is up to you now to shape your life the way you want it to be. You are old enough to be considered a man, so you are old enough to make your decisions as to how

Reviews for Letters From Madelyn

[linda.marsheells · Rating: 5 out of 5 stars]

At the ripe old age of just about 60, i can only say that when i grow up i hope to have at least half the spunk and gumption of Madelyn Kubin. This is a book of letters that she writes to family, one daughter in particular, following the course of debilitation of her husband Quentin.Not that she is a picture of health herself mind you, in fact far from it. But she perseveres, does more on her own then most of us would before she admits she needs help. Aging is not for the meek, you grab hold with both hands and make the most of what you have....and have not. She sure did. Of course there are times when she is sad, depressed, down but her sense of humor NEVER fails her."....at the time of the women's liberation movement was just getting started, i read articles about men becoming impotent because they were having to dry dishes. As i was scooping cow shit out of the barn, and sometimes spitting it out of my mouth, I really did not feel very sympathetic towards them. OH YOU POOR BASTARDS.....my heart just aches for you!She IS my idol.