With Love: A Caregiver's Journal

Contents

Dedication

Acknowledgements

The First Year

The Second Year

The Third Year

The Fourth Year

The Fifth Year

The Sixth Year

Almost Three Years Later

About the Author

Dedication

This book is dedicated with love and gratitude to my mother, Verna I. Wright.

Acknowledgements

It is with honor, sincere appreciation, and deep gratitude that I acknowledge:

Grace Dukes for her artistry, expertise, and patience in molding the original manuscript; for her compassionate understanding and encouragement throughout the unfolding of this book, and for her unfaltering belief that this book would help other caregivers.

Zane Spencer for giving me the initial encouragement to write about my experience, for introducing me to Grace, and for always believing in this book, especially during my low moments of doubt.

Cris Platsis Chamis for sharing so much of the experience with me, for reading the original drafts, and for offering her insights and constructive feedback.

The Church of Today in Warren, Michigan for its weekly televised inspirational messages that not only kept me thinking positively, but helped me clearly see that my caregiving experience was an avenue toward my spiritual growth. There are no accidents!

Community Hospice and Home Care Services of Plymouth, Michigan for the competent and compassionate care given to my mother, for the understanding and help given to me, and for the love given to both of us. My gratitude knows no bounds!

All those wonderful friends and family members who believed this book had to be published, and who supported and encouraged me during its evolutionary process: Pat Austin, Elaine and Jim Cole, Josephine Daly, Karen Lucadam, Lois Rosen, Marcia Scarbrough, Carolyn and Jerry Shockley, Eleanor Spaven, and Joanne Sullenger.

The First Year

On the morning of July 23, 1990, without a warning, my comfortable, orderly world turned upside down.

I was enjoying my busy life of retirement in my home in Flint, Michigan, looking forward to a trip to Alaska, as well as the numerous projects and activities in which I was involved. My mother, healthy and active at the age of ninety-one, was enjoying her independent life in her apartment in Plymouth, Michigan. She was busy every day of the week with bowling, volunteering at her church and Schoolcraft College as a clerical aide, as well as knitting and crocheting countless lap robes and children’s hats and mittens for charity.

Yesterday all was as usual. I had driven to Plymouth, a distance of sixty miles, to spend the weekend with Mother. We’d enjoyed our time together shopping for new shoes, having dinner at her favorite restaurant, and enjoying mother-daughter conversations—something we both treasured.

Then it happened.

It was 8:15 the morning of July 23rd. Mother didn’t respond to my call that breakfast was ready. I went to her bedroom door to find out if she had heard me and what was detaining her. There she sat on the edge of her bed, half-dressed, and looking befuddled at the shoe she held in her hand.

She looked up at me. I saw the dazed look in her eyes. She put her hand on the side of her head, closed her eyes, and winced in pain. My head, she moaned. Oh, my head hurts so much.

Moments later I was on the phone, frantically describing her symptoms to the doctor. Yes, she was experiencing poor vision. Yes, she appeared to have poor coordination…her mouth drooped to one side…speech was slurred…pressure in the back of her head…noticeable weakness. As I responded to the doctor’s questions, my panic mounted. This was my mother I was talking about.

Take her immediately to emergency at Providence Hospital, the doctor urgently directed me.

There followed twelve interminable hours. Tests…more waiting…twelve hours of watching medical personnel come go…more waiting…facing an empty wall…staring at the parking lot below the window…trying to control the gremlins that ran around inside my body…inside my head…inside my heart. After the seemingly endless wait, the report was in.

Diagnosis: Stroke.

Prognosis: Good.

I could only pray they were right.

I stayed with Mother until I saw that she was resting comfortably in her hospital room. The nurses kindly assured me they would take good care of her. I kissed Mother good night with the promise I would see her in the morning.

As I walked the lonely halls of the hospital that night out to the parking lot, the shock of the last hours took its toll. I felt an overwhelming weakness in my knees and prayed that I could make it to my car without collapsing.

I was returning to Mother’s apartment without her.

What was going to happen from here?

Stroke. What a frightening word. What did it imply?

Would she be able to maintain her independent life?

Would she be able to continue doing the volunteer work she loved so much and that gave such purpose to her life?

Would she be able to bowl, to drive her car?

If not, what were we going to do?

I was frightened. I feared what might be ahead. What would I do? I recalled a notation in my daily journal written just a week ago:

I have a strange inner feeling that my life is going to change—perhaps by fall.

Little did I know.

One day at a time, Marian, just one day.

Tuesday, July 24

I was startled when I saw Mother this morning. She lay motionless in her bed with her eyes closed. Her face was flushed, and one side of her mouth drooped noticeably. She opened her eyes in response to my kiss and voice, giving me a weak smile of recognition. She whispered that the doctor had been in to see her and that she would have to stay a few more days. A tear trickled down her cheek. Her slurred speech was worse.

I panicked.What has happened to my mother? She wasn’t like this when I left her last night. I should have stayed with her. I felt guilty.

As I stood by the bed controlling my impulse to throw back the covers to check her arms and legs to see if anything had happened, the doctor came in. He explained that her blood pressure had elevated to a level of concern during the brain scan they did late last night. He assured me, however, that it was under control now. The brain scan did not show that she’d had a stroke, but the presenting symptoms definitely did. The doctor said that was not unusual. Additional evaluations and tests were scheduled for the next two days.

LATER

I stayed with Mother the rest of the day, coaching her in doing the facial exercises the speech therapist had recommended, as well as engaging her in non-stop conversation. Having been a speech therapist, I understood the importance of that. As the day progressed, I saw a gradual improvement in her color and responsiveness. Her body was adjusting to the medication, and the effects of last night’s trauma were subsiding.

By evening her speech showed a definite improvement. She noticed it, too. I mentioned that to her nurse. Yes, the nurse said. We all need to talk to her more. We sometimes forget.

The aide who brought in the dinner tray said nothing. When she left, Mother said, She just comes in and doesn’t say anything. Yes, Mother wants to talk!

Wednesday, July 25

Buoyed by the improvement Mother showed yesterday, I anticipated today to be even better. That hope was abruptly snatched away when I entered her hospital room and found the bed empty, appearing to be readied for a new patient.

I panicked.

Could you tell me where my mother is? I asked the nurse at the nursing station, in as controlled a voice as I could muster,

She’s in radiology.

I sighed a deep breath of relief. How long…

Before I could finish, the woman sitting next to the nurse looked up. Are you Mrs. Wright’s daughter? I’m Karen, the social worker. I need to talk with you. Let’s go down to the room.

My heart did a triple beat. It had been doing a lot of that during the last hours. Numbly I followed Karen down the hall.

In a matter of moments, I, the reserved, outwardly calm and collected person I’d always prided myself in being, was pouring my soul out to her. I admitted being afraid to ask anyone about the pronounced droop on the left side of Mother’s face and her slurred speech. Were these permanent impairments? I talked about my fear of being able to care for her, my fear of being alone with this responsibility, how I missed my brother, Bob. If he were here, he’d know exactly what to do. I still miss him so much, even after twenty-five years. Now I would have to carry on alone. Could I do it? I had no choice.

I couldn’t stop talking. I had to say everything that had been preying on my mind for the past two days. Karen listened compassionately. I even confessed to praying desperately that Bob, Dad, Jack, my older brother who died just three years ago, would send strength to me. I knew this was another life experience for me; somehow, I would come through it. But right now I could deal only with this moment—and I was hurting. My heart and very soul were feeling such pain…confusion…shock. I was so scared, more so than I could ever remember.

Karen put her arm around me. It’s good for you to talk, she said softly. Keep writing in your journal. I’ll be back tomorrow.

Much to my relief, Mother seemed all right when she returned from the x-rays. She smiled when I mentioned that lunch was on the way. I could hear the rattle of the tray carts down the hall. I had filled out her menu sheet yesterday, not knowing what was ahead but doing it anyway. Laughingly, I told her if she didn’t like her lunch she could blame me! She smiled and shook her head, indicating she’d never do that. She has always been so easy to please.

After she had finished lunch and I was assured that all was well, I kissed her goodbye, saying I would be back around dinner time. I headed for Flint and my hair appointment. Looking back, that seemed like an unfeeling thing to do. Yet, amidst the panic of these past days, it was suddenly necessary to have a semblance of order in my life.

That was the wisest thing I could have done. Lena, my beautician whom I’d known for several years, and I were alone in the salon. I was free to tell her all that had happened. She understood my tears. She was so kind, fussing with my hair and nails. I really needed that touching, that connection with someone who cared about me. I’m sure there are those who would think I had no compassion. Just a few days since Mother’s stroke and here I was concerned about my hair? It was much more than that. Deep down inside I was lonely and very frightened.

Mother was awake and alert when I returned. She delighted in the roses that I had brought from my garden. I commented that I heard an improvement in her speech. She agreed that she was talking much better, even though she was very tired. Do I dare hope for a full recovery? It just has to be.

Mother and I talked about many things. It was so important to keep her talking. She even reminded me to water the plants in her apartment and not to forget the one on the table! I couldn’t remember the name of the new resident who had been in to see her, but she did. DeSoto, that’s it! she said proudly. That led to a conversation about the now-defunct DeSoto car. Mother mentioned those cars driven by sun power, a thought evoked by the recent solar car race. She even remembered that the University of Michigan won the race! Fantastic! She is coming back!

Thursday, July 26

Don’t be afraid of tomorrow. The Lord is already there. Those words appear on a plaque by the elevators at the hospital, calming the fears of the passerby. I know because they calmed me.

Mother looked great when I kissed her good morning. Her blue eyes sparkled when she saw me. I’m going home today, she told me.

That’s great! Have you been up walking? I inquired.

No, maybe tomorrow. She smiled. Oh, yes. The doctor wants to talk to you.

I left to check with the nurses.

Walking down the hall, I panicked. Mother hasn’t been out of bed. How could they think of sending her home? Would she have to go by ambulance? How was I going to handle her care?

The nurse looked up at me.

I’m Mrs. Wright’s daughter. My voice started to break. She says she’s being discharged today… I couldn’t continue.

Oh, no, not today, the nurse said. She must have misunderstood. We need to get her up walking first. Also, the doctor wants her blood pressure stabilized.

She guided me into the lounge where I tearfully told her my fears: the death of my family, my aloneness, my panic. She said little; she didn’t need to. I felt her strength, her support, and her understanding. Feeling calmer, I returned to Mother’s room to explain that she would need to be up walking. She understood and was anxious to get started.

Later, the nurse mentioned placing Mother in a rehabilitation facility, explaining that the program would help her with self-care skills, such as dressing, feeding herself, and toileting.

Mother could do all that when I brought her in here. What has happened?

Do I have a say in that? I asked the nurse defiantly. She told me I did. Knowing my mother, she will improve faster in her own home with me. There was no question. I would take care of my mother.

Saturday, July 28

I brought Mother home yesterday. She was so happy to return to her familiar surroundings. She picked up her crocheting, tried a few stitches, then quietly put it to one side. She couldn’t do it. I said nothing, but my heart ached for her.

My niece, Marcia, called in the afternoon. She offered to help take care of my house in Flint. I was grateful to know that someone cared. I couldn’t think of anything for her to do, but I have the sad feeling I’ll need her help before this is all over.

As we talked this evening, Mother said she didn’t know what she’d do without me or how she could ever repay me for my help. I put my arms around her and told her, with tears streaming down my cheeks, Mother, I’ll be here as long as you need me. I love you so very, very much.

Oh, Marian! she said. I don’t know what’s going to happen.

Neither do I, but the good Lord does, I assured her. We have to trust in Him.

After I settled her in bed, I sat quietly on the couch in the living room—and faced my thoughts. I was sure that when death comes to Mother, it would be during the night hours. If so, what would I do? Did I make a mistake by not agreeing to the rehabilitation center? My brave words to the nurse about caring for Mother stared me in the face, and I became very frightened. The aloneness overwhelmed me.

In panic, I called Edith, a friend of Mother’s, and sobbed out my fright. I really wanted someone with me, someone to put their arms around me and tell me that everything would be all right. But how could it be all right? My world had turned upside down, and now I was in a frightening world that I must face alone.

I listened all night for Mother to call me. I slept very little. Every hour, I checked to see if she was still breathing. Finally, I crawled in bed beside her.

Sunday, June 29

I telephoned Theo, my sister-in-law, this morning to ask if she could come over to see Mother and talk with me. I told her how frightened I was, how very alone I felt. She said she would be right there.

Theo suggested that a visiting nurse might be helpful, but I would need a referral from the doctor. I called Mother’s doctor who agreed, especially when I told him about the blister that had broken on her buttocks. He assured me that the weakness she was experiencing was a normal reaction following a stroke. Hanging up the phone, I realized that I was coming to know the meaning of the word normal in quite a different way.

Theo brought a raised toilet seat with her, one she’d had for her mother. It helped Mother, and she readily accepted it. I was so grateful. By the time Theo left, my stomach was no longer in knots.

Theo and her husband came back later to install a bath chair, as well as a hand held shower. I was touched by their thoughtfulness. Mother wasn’t too sure about the shower chair, though. She prefers tub baths, but right now she’s too weak to get in and out of a tub safely.

Monday, June 30

I slept on a cot in Mother’s room last night to be near her. I couldn’t face the possibility of her falling on the way to the bathroom.

Mother admitted she was afraid to stay by herself now. Her concern, however, was that she didn’t want to be a burden to me. I told her I planned to stay with her as long as she needed me; nothing else mattered. She offered to move to my home in Flint, but I knew that wasn’t practical. There were four major advantages her own home had that Flint couldn’t offer: her doctors, Theo (the only family member close by who could help), her friends, and the fact that the move would be too much for me. I assured her that it would be far easier for me to stay with her. Finally, she conceded by saying we’d think about it.

Mother didn’t have the strength to dry the dishes tonight. After drying a few, she began breathing rapidly, felt weak, and had to sit down. She is so determined to resume her independent style of living that she pushes herself to help me and do the things she’s always done for herself.

Tuesday, June 31

Joanne, the visiting nurse, called this morning to say she’d be here in a couple of hours. I was relieved, but when I told Mother, she started shaking and crying. She said she was afraid and didn’t know what was going to happen. I sat on the footstool in front of her, holding her hands, taking her pulse (although I didn’t know what I was feeling), telling her the simple things Joanne would do: take her blood pressure, listen to her heart. Gradually, her fears subsided, and calmness was restored.

Now we were ready for the next new adventure: trying out the shower chair! That experience so totally exhausted Mother that she slept soundly on the sofa until the visiting nurse arrived.

Joanne was amazed at Mother’s rather insignificant medical history and the beautiful condition of her mind and body. The major effects of the stroke had manifested in a pronounced droop on the left side of her face, slurred speech, and difficulty in finding words to express herself. Her blood pressure was elevated as well. Joanne ordered the services of a speech therapist, as well as an aide for bathing and shampooing. A nurse will visit once a week. Knowing we will have that professional help, my worry fell away.

LATER

Let’s do the dishes, Mother said as we finished dinner.

No way! I quickly responded, recalling last night’s experience.

Mother looked so dejected, though, I compromised. Okay, but you must sit down. I allowed her to dry a few dishes before saying that was enough.

I’m not tired, she tried to argue.

Good! I said. I don’t want you to get tired. As I turned to wash a few more dishes, she reached for a piece of silverware to dry. The little imp was going to have the last word! Oh no you don’t, I chastised teasingly.

Both of us laughed! I’m glad we can.

Later, while watching television, Mother picked up her crocheting. Within a few minutes, she became frustrated and put it away. We agreed that 9:00 in the evening was not the best time for handiwork. I assured her that her ability to crochet would come back, inwardly hoping I was right. She smiled and nodded her head. I’m not sure if that was a sign of agreement or resignation.

I called Shirley tonight, Mother’s good church friend. She offered to stay with Mother tomorrow afternoon so I could run some errands. This is the first day I’ve been able to plan ahead. I feel more in control.

Wednesday, August 1

Mother slept until 9:30 this morning, very unusual for her. She said she felt so much better. Her voice was stronger, too. However, as the morning progressed, she seemed to get weaker and complained of being cold, even though the temperature in the apartment was a warm seventy-five degrees.

This has not not a good day for Mother. She isn’t feeling as strong as she thinks she should, and that is discouraging her. We talked about the fact that there would be days like this.

I’m recalling the thought I had earlier in the spring that I was getting ready for a change. I didn’t know what kind, but I think I’m finding out.

I do enjoy being with Mother and taking care of her. I treasure our intimate conversations about days gone by. At dinner tonight we recalled the memory trip we took last summer to visit the area in Canada where she was born and raised. I delighted in hearing her remembrances from childhood, driving the road that she walked to school, and seeing the farm where she grew up. That trip holds even greater significance now.

I consider it a privilege to take care of my mother, but I do worry so much. My faith is that God has a plan He is working out. If we don’t fight it, our lives will be good—not free from pain or sorrow because they are a part of life—but more accepting, with less tension and stress.

Thursday, August 2

The shower procedure went more smoothly this morning. Mother felt so good to be clean all over, and I was pleased that my newly discovered nursing skills were improving.

Diane, the speech therapist, made her evaluation this morning. She assured me that Mother was doing very well. Afterwards Diane and I talked, sharing our mutual professional background. I enjoyed that. I’m realizing how very important it is to give time to the caregiver, as well. Already, I have discovered how very lonely caregiving can be.

Marcia, my niece, came to stay while I made a quick trip to Flint this afternoon. Mother held my hand so tightly as I kissed her goodbye that I felt like a mother leaving her child with a sitter for the first time.

There were several cards and letters for Mother in today’s mail. She was delighted to hear from Elaine and Carolyn, her two granddaughters who live out west. They offered to come and help. I appreciated their kind offers, but they have families to care for and full-time jobs. Mother’s care will be long-term. Life, I realize sadly, is not going to return to the way it was.

Saturday, August 4

Mother is still sleeping. I’m taking the opportunity of the quiet morning solitude to write in this journal, my trusted companion. Later, I’ll write to a couple of friends. Writing has helped me keep focused during these past two weeks. I find it is a comforting bridge to friends whom I love and who understand me, no matter how I feel.

Yesterday the doctor was absolutely amazed at Mother’s recovery! He said she needed to push herself more, though, get back to crocheting, keep her mind stimulated and alert. Driving, however, was out of the question.

On the way home from the doctor’s office, Mother was so depressed. She told me to sell her furniture and put her some place. She was giving up because the doctor told her she could no longer drive.

Later, we talked. I told her we had choices, although I didn’t know what they were. I’m looking forward to this as an adventure, I said optimistically. I sensed I was at the brink of the most beautiful part of my life being with her. We cried and hugged each other. It was a very tender moment.

At dinner, she talked again about selling the furniture. But Mother, I said. You’re staying right here. You aren’t going any place (like a nursing home, I thought but couldn’t say it). I’m going to stay with you.

Oh, no, she argued. You can’t give up your home.

I told her I had no intention of giving up my home. We would have two homes—hers and mine. That relieved her somewhat.

LATER

Being told that she could no longer drive is bothering Mother. If I can’t drive, it’s not worth living, she told me. shaking her head dejectedly.

Mother! I said in utter disbelief. Are you going to allow a car—a piece of metal—to control your life? Look at your life. Think of all the pleasures you’ve given others through the lap robes, hats, mittens, and hangers you’ve crocheted, through your smile, and all your volunteer work. And for you to say that that piece of metal out there is going to stop you from doing all those good things just doesn’t make any sense. I told her that the two of us would be living together, and my car, which she likes, is all we would need.

Nothing more was mentioned about the car.

Sunday, August 5

I started to reread my journal entries this morning but soon stopped because it was just too painful. I think about the events of the past two weeks and can hardly believe it has been only two weeks, not two years. I don’t want to relive the details. Only time will take away the sting.

Mother looked happy when she got up this morning, saying she felt good. She was able to dress herself and comb her hair for the first time in two weeks. I complimented her on how much more she’d been able to do today. She was pleased and encouraged that her strength was returning.

I was going to have you fix your own breakfast this morning, I said jokingly, but we’ll save that for another day. She smiled and nodded her head gratefully. She felt stronger, but not that strong.

One step, one day at a time.

During our breakfast conversation, I mentioned going up to my home in Flint on Thursday and asked