Caring for a Dying Loved One
Mom Relaxing After Hosting the Family Easter Celebration
Care-giving Is a Final Gift of Yourself to a Dying Loved One
I had the opportunity and privilege of sitting beside my mother while she died at home of cancer. She had opted at the age of 89 to leave her newly discovered cancer untreated and receive hospice care so she could die comfortably in her own home. At the time of her diagnosis, she was given about six more weeks to live. By this time she was on oxygen, and I had opted to get 24-hour care for her, since I was a small business owner and could not devote full time to being a sole caregiver. I took one shift of her care until the last two weeks, when I could not give what was needed in the physical care. Nevertheless, I spent every available moment with her during those six weeks. For her last three days, I only went home to sleep, and when I knew it was probably her last day, I was committed to staying with Mom until she made her final journey. I believe waiting with a loved one as he or she dies is a final act of caring. No matter how great one's faith, I doubt if anyone wants to wait alone to embark on life's loneliest journey.
I took this picture of mom on Easter Sunday, about two years before she died. All other photos in this article, except product pictures, were taken by me or other members of my family and are used with permission.
Mom with Me at Knott's Berry Farm about 1948
Mom Was Always There for Me
So I wanted to be there for her.
As far back in childhood as I can remember, my mom, Marjorie Hart, was there for me. As a young child I can remember our first home. It was the only one I remember as a child that had a fireplace. I remember on rainy days Mom would pop popcorn over the fire with one of those old-fashioned long-handled poppers. I remember her absolute fright when I was very young and showed her the "gopher bunny" I had caught in a coffee can without somehow being hurt in the process. I remember sick days when she got me to eat by making attractive foods in the form of funny faces. And I remember the many times she read to me, thus introducing me to the books I learned to love. She also helped me learn to read them by the time I was three.
When it comes down to it, life is a series of little things, everyday things that you don't remember one by one, but when taken together make a happy childhood -- something one can't take for granted anymore. It's the clothes she sewed for me, the meals she cooked, the meals she taught me to cook, the bread and cookies we baked together so I'd learn how to do it by myself, the way she worried the day she thought I'd been kidnapped going back to school at lunch because the teacher hadn't remembered seeing me that afternoon and I was late meeting a ride after school -- the little things that add up to so much.
And there were the big things, too. It was Mom's encouragement to bring my friends home when I was in junior high and high school. It was her willingness to open our home for parties for the clubs I belonged to in high school and the after church Sunday night sings. She typed my term papers in the days before we had computers and had to retype every draft. She made my prom dress. She made my wedding dress even though we couldn't have picked a time that was worse for her schedule to get married.
She was also the heart of our family. She saw my brother and me through any crisis we had in our lives, and though we often disappointed her, she never lost faith in us or stopped praying for us. She was willing to host every holiday meal until we were old enough to take over when she couldn't do it any longer. She kept all the parts of our extended family in touch with each other even when we didn't see each other any more.
Most of all, she continued to love Dad until the day he died, thus giving us an example of the importance of marriage and giving us a stable family. That is something only about half of today's children have. We always knew that if ever we had a serious problem, Mom and Dad were approachable and they would help in any way they felt would be good for us. After Dad died, Mom took on all that support she had shared with him before., rejoicing that Dad did not have to suffer through the sorrowful pages of our lives as she did. How can you not want to give back to a mom like that?
This picture was taken when I was seven years old, at Knott's Berry Farm in California. We often ate in the Chicken House there with extended family on Sunday afternoons, later walking around ghost town.
It usually centered around her family.
Mom herself did not have the happy childhood she tried to give us. Her father was a traveling salesman and an alcoholic. Her mother and the rest of the family as they grew older learned to be enablers before people used that term. Often my uncle would travel to some far away town when he was still a teen to bring his dad back home after he got drunk. Grandma tried to keep up appearances and trained her children to do the same.
Because of her father's occupation, Mom attended at least eight different schools in 12 years. She was too often the new kid on the block, always having to make new friends and then leave them. Mom was also a middle child. She often was held accountable for her younger sister's escapades because she was older. Her older brother was her Mom's favorite and was hardly ever blamed for anything. But Mom loved him very much anyway, and was crushed when he died of pneumonia as a young man. He evidently had married a woman who didn't love him much, and married another man as soon as he died. She took their only son and hid him from the rest of the family, not wanting him to know he had had a different father than his mother's new husband. This crushed my grandmother, and she would often wistfully go and watch him get off the school bus just to see him. My cousins and I were always warned that we had another cousin about our age and we were told what they thought his name was, in case we should ever meet him. Our moms were afraid we might meet and fall in love with him one day, and we should be forewarned. We never did meet him.
When the family moved West to Long Beach, California, from North Dakota, my mother and her mother got whatever jobs they could. On top of this, Grandma rented out rooms and provided board for some young men, so everyone worked very hard. By the time I came on the scene, my aunt had married and had a daughter. But as far back as I can remember, she had two daughters, my cousins, Kathy and Judy, whom I saw a lot of when I was young, since my mother and her sister June were very close. Their mother died when I was seven. My grandfather remarried in two months, and that caused a bit of a rift in the family. We heard many stories about the unhappiness my mother and aunt suffered because of that rift. Fortunately, my cousins and I were largely removed from the fray, and we heard these stories as adults.
Mom met my father, Robert Madison Hart, on a blind date. They fell in love and got married within a short time. They eloped. It was during the Great depression, and Dad was working as a soda jerk in soda fountain in Long Beach. He also did short order cooking. Mom was working in retail stores. Mom and Dad moved to Bellflower, California, around 1945. Then mom got a job as a teacher in a child care center in the area, and I was enrolled there, as well, until I was ready to start school.
When my brother was born in 1953, we moved to a larger house in a more centrally located part of Bellflower where we could walk anywhere in town. This is the only house my brother knew growing up, and although I missed the large back yard from the first house, and the network of backyards we used to play in, the new neighborhood was close to everything important. I could walk to church, to the library, and to go shopping with my friends. Mom was mostly a stay-at home Mom until I was twelve. My dad was by then working for Stephens Adamson Manufacturing Company in Los Angeles and although Mom was glad he had a good job, she was not happy when his job began to require travel. She had always vowed she'd never marry a traveling man, and then my Dad became one. He had been required to leave for the other side of the world just after my grandmother died, and my mother was quite depressed while he was gone for six months. She was stuck at home with me and no one to share the responsibility. She pretty much had to rely on the neighbors and my aunt for company during that time if she wanted adult conversation. Dad continued to travel off and on for the rest of their married life, but he never again had another trip as long as that one.
Mom Before I Came on the SceneClick thumbnail to view full-size
Mom As Teacher
A New Career -- Teaching
When my brother was about three and I was about 13, Mom decided to finish college and get a teaching credential. This had been suggested by a psychologist who thought Mom needed to get out of the house. She had suffered a slipped disk when my brother Bob was two. I remember coming home from school one day finding her on the floor with my aunt and a doctor there. She had to go to the hospital, and I think my brother and I had to live for a while with my aunt. The truth is, I don't remember exactly where we stayed while Mom was in the hospital. Maybe we were only gone during the day and came home at night. I do remember having to take over most of the physical care for my brother after she came home, because she could no longer pick him up. I also became the built-in babysitter when she started school. She took her classes after I came home. I was in charge until Dad came home. I remember that Mom graduated from college about the same time as I graduated from high school. She spent another year getting her credential. I believe by the time she actually started teaching English, I was away at college.
Our First Home
Life Goes By at a Swift Pace
Mom and I were both busy in different places after I got married and left home.
First we lived in West Los Angeles for half a year before moving back to Long Beach for a year of graduate work. Mom remained in Bellflower. I taught in Long Beach for a couple of years after finishing school, so we still saw each other most Sundays. But in 1967 we bought our first home, in Culver City (see picture), and that was much farther away. Although we frequently talked on the phone, we rarely saw Mom and Dad except for holidays. Everyone was busy. In the picture are, left to right, Dad, me, our Cousin Edna (who had helped us with our down payment), Mom, and my husband, Kosta.
In 1976 we moved even farther away -- to Newbury Park in Ventura County. That put a good two hours between us. And when we moved here to San Luis Obispo County, it put four hours between us. By that time, Mom had been a widow for six years, and although she still was active in many organizations, she wanted to see more of her children. She was still less than an hour from my brother and his family, so she saw a lot more of them than me. She loved keeping up with her grandchildren, as well, and we didn't have any for her to keep up with by this time.
It was after a family crisis in 1994 that I finally persuaded Mom to move closer to me. She moved to Paso Robles in 1995, and we again began to spend most Sundays with her, since she had moved away from her old friends and church and clubs, and was finding it hard at her age (about 77) to start over in a new community.
Get Love You Forever Here
Love You Forever Makes a Great Gift
This has almost become a classic gift book, since all ages can relate to it, from children to grandmothers. As a mother holds her new baby boy, she sings to him: "I'll love you forever, I'll like you for always, As long as I'm living my baby you'll be."
For all the phases of her boy's life you will see her singing the song, whenever he is asleep. When he grows up and moves away, she sometimes even sneaks over and rocks him and sings the song to him. The mother grows older and older, and one day calls her son to come and see her because she was old and sick. And he went to her and picked her up and rocked her and sang his own version of the song to her, ending with "As long as I'm living my Mommy you'll be." And you know his Mommy is no longer alive. And you'll probably cry as he stands at the top of the stairs for a long time before going down. And then he goes down to his baby daughter's room, picks her up and rocks her, and sings the song to her. And carries on the expression of love to the next generation. This is a great gift for mothers and grandmothers.
Most of us in loving families who had a mother who was there for us have seen a bit of this in our lives. We knew our mothers held us in their hearts as long as they lived. I know my mother loved and prayed for my brother and me through every difficult period in our lives. And the time came for us to show her that same loving care she gave to us. When she lost Dad, we tried to be there for her. When she had her hip replacement, I made a long visit to help her out until she was able to care for herself again. When she moved close to me, I saw her on an almost daily basis. And the time came in her very last years, when it was my turn to care for her and wait with her as she approached her final journey.
Storms Clouds Sometimes Bring Blessing
Do you know someone who is about to take on a care giving experience?
Caregivers need encouragement.
It's a difficult and demanding job. Many people dread it and wonder if they will be able to handle it. I designed this card on Zazzle for someone just beginning the care giving experience. The inside bottom is blank for your personal note.
The complete text, outside and in the upper inside is the third verse of hymn by William Cowper, "God Moves in a Mysterious Way": The text of the entire poem is below. I have written the third verse, that appears on the card, in bold. This poem is now in the pubic domain.
God moves in a mysterious way
His wonders to perform;
He plants His footsteps in the sea
And rides upon the storm.
Deep in unfathomable mines
Of never failing skill,
He treasures up His bright designs
And works his sovereign will.
Ye fearful saints, fresh courage take;
The clouds you so much dread
Are big with mercy and shall break
In blessings on your head."
His purposes will ripen fast,
Unfolding every hour;
The bud may have a bitter taste,
But sweet will be the flower.
Blind unbelief is sure to err
And scan His work in vain;
God is His own Interpreter
And He will make it plain.
A Bud May Have a Bitter Taste
Caregivers Need Help and Support - There are support groups, but caregivers can't usually get away to attend them.
These are some books I wished I had known about when I was caring for my mom. If you have aging parents who may depend on you someday, I'd pick up a couple of these books now. When you need them, that need might come as suddenly as Mom's compression fracture. One minute you are in the ER and the next you are a caregiver. It's good to plan ahead. Get the books before the need is acute. Study them and begin to prepare for your care giving days before you are thrust into it full time.
The Emergency Entrance at Twin Cities Hospital
The Caregiving Years -- Chapter One
Getting to know each other in a new way.
Although from the time Mom moved to Paso Robles to be near me there were times when Mom needed my help, she was mostly independent until 2001. That was the year she suffered a compression fracture in her spine. At first she thought it was sciatica, but it didn't get any better. She was in terrible pain. There was no way she could stay alone. My memory of this time has dimmed as to order of events. There were hospital stays and doctor visits. We tried home care at first, when we still thought it was sciatica. But nothing would kill the pain. I moved in so that there would be someone with her on a daily basis, and I think a doctor had prescribed pain pills. They didn't help. There was no position that would relieve the pain. She was so desperate when trying to walk or lie down or sit that she would try crawling on the floor. It was becoming obvious that this was no ordinary sciatica. We somehow got her admitted to the hospital in June. They couldn't even get her on the X-ray table until they could relieve the pain somewhat. She was on strong pain meds and shots, and also Ativan.
I will not speak in detail of these days because it wouldn't be kind. She stayed in the hospital for about three weeks, and I remember she was released on July 4, which I thought was significant. During the time when Mom was still at home and also when she was in the hospital, I spent every moment I could with her. On some days I had to spend a couple of hours at home to ship out orders and answer emails. Sometimes my husband would stay with her while I did that when she was in terrible pain. Let's say she was out of her mind with pain, and when she was on the meds she reverted to a second childhood or a state like drunkenness or something in between. Mom had always been a dignified and polite person, always thinking of the needs of others. Now the pain was playing with not only her body, but her mind. At times she did things that would make me laugh if it weren't so sad.
In the hospital they discovered her compression fracture in the spine, and that's why the pain was so intense. She was put on oral pain killers and patch pain killers and Ativan. The Ativan was supposed to calm her down, but it also made her paranoid about her roommates and removed all her inhibitions. She would say and do embarrassing things she never would have said in her right mind. She had a very independent streak still, in the midst of this, and was determined she should use the bathroom -- not the bedpan. She could walk with the walker, but they were afraid she would fall, so they would tie her in bed. I finally talked the nurses into letting her walk to the bathroom and be free of her bonds when I was there. So I stayed at the hospital with her as many hours as I could, helping her at meal times and doing all I could just to be with her during that time. She was a terrible patient and acted like a child when under the influence of the Ativan. It was a terrible thing to watch -- your mother being a child. It was hard to communicate when she was paranoid and saying things like the person in the other bed was spying on her, plotting against her, or worse. She said these things loudly and I was so embarrassed for her when I knew she would be horrified if her real self could see what she was doing. She had always been so tactful, and this person in her body was fighting the nurses over the restraints, and saying that she thought the person in the other bed was dead. I begged the nurses not to give her the Ativan, but they said they had to. As she got better, she would have more visitors from church, and then she would ask them if she was crazy. These were her friends, and I explained that the drugs were altering her mind, hoping they would understand this wasn't really my mother talking, but the drugs.
On July 4th they let her go home. It was a relief for both of us. She was still on the patch and the Vicodin, but she was at least no longer a "prisoner." I continued to stay with her most of the day and at night until she could manage on her own. I still came over daily to help her shower and change her patch. Then one day she said she was feeling well enough not to need the patch anymore and she stopped using it. It wasn't long before she got very sick and I took her to emergency. They discovered she was going through withdrawal from the pain killers, so they kept her there a couple of days. Once at home again, she was finally able to be on her own at night and I was able to start sleeping at home again. It had been a long two months.
Funny Prayer about Getting Old at the Caregiver of the Year Dinner
This was given at a dinner for a Home Instead caregiver of the year. It's a bit of comic relief for those who are growing older and those who care for them.
I will keep adding appropriate links as I find them.
- Guidelines for Home Care for the Elderly
This article is full of practical advice for those who need to start thinking about home care for a loved one. The author is an RN and also is experienced at caring for her mother and her husband at home. Her article is thorough will help you think t
Photo of Mom's Journal I Found After Her Death
What is it like to be old and living alone with failing health?
Tidbits from Mom's journal in her last two years.
By this time, Mom's sister, June, who was three years younger, had died, and Mom was still grieving the death of the last member of her family. Mom and June had written to each other every day since Mom moved away from her. Mom would start to write a letter and realize there was no one to get it on the other end. She would go to the mailbox knowing that there would be no letter from Long Beach in the mailbox. Her hearing was getting worse, but what cut her off from her normal activities was her failing memory. She felt insecure about driving to church or to her bridge groups. She had to stop volunteering at the library's gift shop because she sometimes forgot to go. She was also beginning to miss an occasional hair appointment. Although I visited Mom for a few minutes or longer after work each day and my brother Bob called almost every day, Mom was feeling isolated and lonely. I'll let her tell it in her own words from her journal:
Monday, June 16, 2003: Wish I were computer literate. I could probably fill a lot of lonesome hours if I knew what to do with the thing other than playing hearts. Why is it so hard for me to learn new things?
Tuesday, June 17: Bridge today. Hope I play a respectable game. I think I'll drop out of our group today. I'm getting too old for games that require remembering things, as bridge does. I don't really enjoy it anymore. And besides, after reading that article on seniors driving, I'm not sure I should be carrying passengers at my age.
Monday, June 23: it's such a comfort to have Bob call every day. Perhaps because of my age, he's concerned about my health, but nevertheless, it's thoughtful and kind of him to call. He's such a good son! I'm truly blessed to have such good children.
Feb. 26, 2004: I seem to want to "Journal" when I'm unhappy or depressed. This morning I wanted a long comforting talk with Barb, but she couldn't talk -- "These are my business hours." I have to remember that just because I have nothing to do , it doesn't mean everyone else is also free.
Fortunately Bob called shortly afterward, and he and I talked for awhile. What would I do without him?
2/27/04: Today is Friday, and I have no help coming in from YPS. $80.00 saved, and I'm sure I will do just fine.
Barb and Bob seem to have conferred about my situation and they've concluded that I'm to forget the money I'm spending and continue to keep helpers whether I think I need them or not. I hate to see all that money going out, though! Guess I'm not the best judge of my needs these days. Old age brings many problems I never anticipated. Let's face it, I'm OLD!
4/1/04: Dear Sis, ...I fell again Tuesday, and I'm still a little stiff and sore today. Wish I could stay right-side up for a change! I miss you SO much!
I had encouraged Mom to go ahead and write what she wished she could tell June when she missed her as part of her grieving. She was so used to writing to her every day before she died. I should mention that by this time we had finally found a helper Mom liked -- Bobbie. Bobbie genuinely cared for Mom and the feeling was mutual. Bobbie came three mornings a week to do light housework, fix lunch, and eat with Mom, but mostly I was hoping she would give Mom the company she craved in the morning. My visits were usually about 5 PM after I finished my run to the post office for my mail order business. I normally stayed about 30-60 minutes, and sometimes longer. Sometimes I'd fix something for Mom to eat if it seemed to be indicated. No matter how long I stayed, it was never long enough. Kosta and I also spent almost every Sunday afternoon with Mom if we were in town, and we usually were.
Friday, July 9 Another day with no plans, but yesterday had lunch with Barb. Touch of Paso had a drawing & Barb won two free lunches, so I think we will be eating there again soon. Something nice to look forward to.
My garage door opener is giving me problems. Soon I'll have to call for repairs, I guess. But what shall I do today?! Read my book, I guess -- Same old, same old.!
Sat. Aug 7: This week has been even more lonely than usual. Bobbie was here yesterday only -- and just for four hours: 10-2. Barb came by for a short visit last night, but she couldn't stay very long. My eyes are very tired, so reading or TV isn't a pleasant option.
August, not dated: I had the garage door fixed -- $60.00. Oh, well, it's only money. Besides, I was able to exchange a few words with a human person!
Is it a sin to wish I could go to bed and not wake up? I know it's wrong to actually take my own life, but even just wishing??? Oh God, I'm SO lonely! If it weren't for Bob's calls every day, I might just shrink up and die, and then I'd be out of my misery.
I walked to the mailbox this morning. Used my cane and felt really old. Let's face it. I am! I was able to make it home again, even with the cane. Time for bed.
8-20-04: Bob & Susan & Joey came up Saturday. We had the afternoon & evening together & breakfast this morning. How I hated to see them leave! They left at 12:00 & arrived home around 4:30. Hope they'll be back soon. Guess Barb is out of town -- still getting Paula's place ready to rent. (Paula is my mother-in-law who died in May of 2004, and her house was in Carmel Valley two hours away. My husband inherited the house.) Right now I'm on my own until Bobbie comes tomorrow. Hope I don't do anything careless and hurt myself!
January 29, 2005: How different my life has become! I never would have guessed five months could make such a difference! From being independent to having to be cared for 24 hours a day. How did this happen? Did I fall? Have a heart attack? A stroke? I can't remember. I know I was in the hospital, but I can't remember why. I have a faint recollection of having a breathing problem. That must have been the reason. And now I need oxygen all the time, and someone always to care for me.
I will have X-rays on Monday to see whether I have cancer in my lung.
It's a problem keeping my emotions under control -- tears always just below the surface and a big lump in my throat that never seems to go away.
Thurs Feb 3: It's hard to wait until I find out whether I have only a few months to live. Is it cancer or isn't it? Whatever will be, will be.
That was Mom's last entry. It was cancer. Her prognosis when the results came back were that she had six weeks left. She opted for hospice and dying at home.
Mom with My Cousins
Caregiving -- Chapter Two
Planning ahead helps.
In 2002 my mother's younger sister June died of cancer. We attended her funeral in Long Beach. Afterwards, we went to the home of my younger cousin, Kathy. The picture is of Mom between my two cousins -- the older, Judy, on the left, Kathy on the right. We hadn't been together for years, since Judy lived in Montana now. Kathy had been managing her mother's care, and she was about to become a great resource for me.
June's death left a great void in Mom's life. They had always been close, and wrote to each other every day after Mom moved away from her area. After June died, the letters stopped coming. Mom had a few organizations that filled a few hours a week. She had church on Sunday, Bible study one night a week, and choir on Wednesday. She volunteered at the library gift shop. She was in three different bridge groups. For her Tuesday group, she drove her neighbor, who could no longer drive, with her. Gradually, though, she found she needed to drop these activities. Choir and Bible study went first because they were at night, and she could no longer drive at night. The other activities had to be dropped because of her failing memory. She became more and more dependent upon me for company, and I simply could not be with her physically for as many hours a day as she wanted me there. She needed more people in her life. Her cat, Soci, was not enough. She also craved human company.
She finally agreed near the end of 2003 to try living in a senior assisted living facility. I was hoping she could make some friends there, and there were lots of activities she also would have access to. There was a bridge group, and best of all, she would not have to eat her meals alone. We decided to give the senior residence a three month trial. She could still drive, and she was free to visit the house -- only a couple of miles away -- when she wanted to. In the long run this didn't work out, but it was a lucky break for me she was there. When the Paso Robles earthquake in December. Mom had come home to spend the Christmas holidays with my brother and his family, and I was able to take her room in the senior residence for a few days until I could clear out my room enough to sleep there again. I had eaten there with Mom before several times and so I already knew some of the other residents.
By January, we knew the senior residence was not the right solution for Mom. She gave notice and came back home, but it was with the agreement that she would have a helper three mornings a week to do any light housework that needed doing and to prepare a nutritious lunch. Mom, like many older people living alone, didn't relish cooking for just herself.
We called an agency and signed an agreement. As luck would have it, she didn't hit it off with the first person they sent. It seems that person was also allergic to cats. She called in sick, and Bobbie was sent to substitute for her. Mom really liked Bobbie, so eventually we were able to get her, instead. This worked out very well, because Bobbie was a friend to her -- not just an employee. Mom would take her to lunch if they had been on an errand and there wasn't time to cook. Bobbie would take Mom to medical appointments that were close to me, but not to Mom. If I needed to be there to communicate with the doctors, I could be there in five minutes and meet Bobbie and Mom at the office.
I would recommend this to anyone who believes their parent will be needing a care giver in the next year or two. Once you have to find someone quickly, it's too late to find just the right person. When Mom had to be on oxygen at all times, I decided she needed help 24 hours a day. It would be too easy to trip on the long tail that was part of the tank set-up. Someone had to be there just in case something went wrong. When it was evident that Mom needed full-time care, Bobbie agreed to come five days a week and stay all day. I came from 5-10, and we had someone come in for the night until Bobbie came in the morning. That meant Mom only had the strangers from an agency, none of whom were compatible, when she was likely to be asleep.
Having Bobbie around took a lot of pressure off me. Mom did pretty well for most of 2004, which was good. At that time my husband's mother had come to live in the mobile home on our property so my husband could care for her. She was in the last stages of cancer, but hadn't accepted it yet. She died in May of 2004, and she had also opted for Hospice care, so when Mom's time came, we were quite comfortable with Hospice as an option.
It's amazing how fast cancer can take someone downhill. I remember one Sunday afternoon in October of 2004, when our good friends said they were passing through and wanted to meet us somewhere for dinner. Since Sunday was Mom day, I asked our friends if Mom could come along. I knew they would say yes, so we all met at the restaurant. Mom, who rarely admitted to having an appetite, had a wonderful time and ate more than I'd seen her eat in a long time. I would never have believed that she had less than six months to live.
Bob and his family came for Thanksgiving, and after they left we had another ER visit because Mom's heart failure was kicking up and she was having trouble breathing. After Christmas, we had another ER visit and they kept her for observation and treatment. Since Mom had been complaining about stomach pains and lack of appetite, I asked the ER doctor to look into that, since Mom had no primary care doctor. (Her doctor had retired in December and she was still waiting for her first appointment with the new one. ) They did a CAT scan and we had to wait for the results. Mom got to see her new doctor for follow-up, and then later in January we had another trip to the ER. Again, they kept her. The doctor ordered more X-rays, and the cancer was discovered -- a grapefruit sized tumor in the abdomen and also something in the chest.
Mom opted not to try to treat it. At 89, she knew it would not really save her. She came home and we signed up for Hospice. We found new caregivers for the night shift we all felt good about, and that really helped. I still took the early evening shift until I didn't feel competent to administer the meds properly. I still came, but it was mostly for emotional support.
After the prognosis, Bob drove up every Saturday -- an eight-hour round trip -- so he could spend some time with Mom. We were all there, and Mom spent part of that time with us helping to plan her funeral. She picked a hymn none of us knew, and she tried to teach it to us. Fortunately the priest who would conduct her service, an old family friend, knew it well and was able to rehearse us the night before the service.
You may be wondering how Mom took her prognosis. As you saw in her journal, and as she told me repeatedly in her last few years, she thought her life no longer served a purpose and she was wondering why God was leaving her here so long. The prognosis changed all that. She discovered she did not want to die after all. She didn't want to leave us. For a month after the prognosis, she tried to outfox death by proving she wasn't sick. She refused to take to her bed. The medications Hospice supplied kept her fairly pain-free, so she would spend most of her days in the family room as usual. Finally that didn't work anymore, and she no longer had the strength to spend the whole day out of bed. By the last two weeks, she was in bed most of the time. Hospice helped us know what to expect at every stage, and the nurse was there often to check on Mom. The last two weeks were spent almost entirely in bed.
As death approaches, one needs to face it with someone who helps you accept it and allows you to talk about it. Bobbie and I and Bob encouraged Mom to talk about her feelings. We talked about whom she wanted to wait with her during the last hours. We all agreed that Bobbie and I would wait with her together, and Bob, if he happened to be there. There was no way he could take off work because he was the sole worker in the company he owned. We agreed to keep him posted. Bobbie brought in some quiet inspirational meditations on CD for Mom to listen to in bed. We finally brought the priest in when the Hospice nurse said Mom would probably slip into a coma in a couple of days. Mom was Episcopalian, and her church has a liturgy for the dying person and any family members gathered around the bed. We wanted Mom to be conscious for it.
Soothing Music Helps a Patient Relax
A person in pain or who is facing the prospect of a final separation from loved ones and all she has known on earth is under stress. Hospice believes in the power of soft music to soothe and calm such a person. They believe it so much they sent two musicians to play for Mom. I spent a lot of time listening to various selections in these albums before recommending these. The albums I chose contain quiet Christian instrumental music. When you click through, you can listen to the songs and examine the other suggestions under the playlist. You can even design your own playlist. I have saved mine to the cloud and will make a playlist to download to my MP3 player -- if I ever figure out how to use it.
Quiet classical selections are also available. They are often among the suggestions you will see under the playlist.
Quiet Music to Calm a Dying Christian
Quiet Worship Songs to Rest In
The Vigil - Being There with Your Dying Loved One
The day finally came when Mom slipped into the coma we were told to expect. That happened on a Monday. Bobbie and I had committed to being there and even sleeping there so we would be around for Mom's last hours. The nurse said, though, that death would probably not occur until Tuesday. We decided Bobbie would stay the night and call me if things appeared to be moving faster than we expected. The nurse had given us a book with the information we would need in being able to tell how near death was. It's very important to know what to expect at each stage of dying so you can be a better emotional support. There is a web site that has much of this information -- Compassion and Support at the End of Life. I recommend that you check it out.
Those last two days when Mom was in the coma, we knew that Mom could probably hear us talk and hear music, even if she could not respond or talk back to us. Alternately we played quiet music that was inspirational and restful. And we read aloud, taking turns, from the Prayer Book and Hymnal that Mom had often read. There are special readings for the time of death. We also read some of Mom's favorite passages from the Bible as we waited with her. Sometimes we talked to her, telling her we would miss her, but giving her permission to leave us even so.
On Tuesday, the nurse came, and she told us that Mom would probably leave before the day ended. A few minutes before 5:00 PM we saw the signs that death was very near. We called Bob and told him Mom was about to go and that he should say goodbye and give her permission to leave so she wouldn't try to hold out until the next Saturday. We held the phone to Mom's ear until Bob finished saying goodbye. Half an hour later we called him back to tell him Mom had gone. Shortly after that, Bobbie left. She'd had a long night before and a long day. It was then I called in the mortuary and tied up some loose ends while I waited for them. The events that followed with the mortuary are covered in another article.
Seeing a Loved One Off on a Final Journey Is the Final Act of Sharing.
Have you ever been present when a loved one died?
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I appreciate you're reading this article and sharing my journey. I hope something in this will help you if and when you are called upon to care for a loved one near the end of life -- or even through a temporary emergency where full-time care is needed. Maybe you have an experience of your own to add or a question to ask. Please add your comments below.
© 2009 Barbara Radisavljevic