Dear Stacey: Reactions to stories of caring for a dying loved one

Readers responded to Stacey Burling's April 4 articles on death and caregiving with compelling stories of their own. Here are some of their emails.

Dear Stacey,

I am so sorry for your loss, but your articles today (4-4) are the best thing I have ever read concerning end of life management. I lost both of my parents to cancer. As a former nurse, I thought I was pretty prepared to be a caretaker. It was a lot harder than I thought, although it was even harder for other relatives who had no experience to draw on.

My father died of bladder cancer in 1997 and my mother of cervical cancer in 2005. Both of their cancers had metastasized to bones and brains. Their deaths were not very pretty. There were no sweet bedside good-byes. My father died at his home in Chestnut Hill with his third wife. He had battled cancer, mostly in denial, for about two years. In May of '97, my dad - a high-powered advertising executive - stopped working because the treatments were so frequent. Around that time his decline was rapid: He used a wheelchair, stopped drinking cocktails in the evening, he stopped wearing his glasses and started watching Oprah. I knew it was a matter of time. His wife preferred caring for him with private duty nurses, so I didn't see him every day. My visits left me in shock each time. The last time I saw him, the night before he died, he was cachectic (physically wasting), gray-skinned and scared. I can't get that image out of my mind.

My mother, widowed at the time by her third husband, lived alone in New Hope. It was my mother that needed and accepted my care. She was 80+, vibrant and active until January of 2005. She had beaten the first round of cancer six years before and put up a good fight when it metastasized to her bones. But in January she fell and that was the beginning of the end. She said, "For the first time in my life, I feel old." I began visiting her weekly; by mid-March it was clear that she could no longer climb stairs, so we moved her bed to the first floor. She was furious! I decided that, if necessary, I would move into her house to care for her. My siblings disagreed and we hired angels to care for her.

That didn't last long: the first week in April the Delaware River rose over its banks; the flood chased her out of her house. As we drove her to higher ground, she said she was depressed.

For a week, we lived in a motel, which is not a good place to care for a dying person. My sister and daughter cared for her when I had to attend to a needy client, but their lack of experience resulted in her falling in the shower and getting wedged between the toilet and a tile wall. Clearly, that was not a long-term solution. We found a lovely, assisted living facility for her. We moved several pieces of her own furniture into the room, including her computer so she could write. She hated everything about it. Then her doctor told us there wasn't anything else he could do. It was a very sad day. She closed up, withdrew from conversation and never touched the computer. In May, one of her best friends returned from an extended trip. After his visit, she went into a coma and died four days later.

I always say that I learned more about life from death than I have from anything else.

I learned who my friends were. Our family circled our wagons and really didn't want people to come into our circle. My true friends knew that. The others kept calling me on my cell phone.

My mom would never discuss her funeral. We had to remember whether cremation was what she wanted. We decided it was and sent her ashes floating down the Delaware by her beloved New Hope.

Be careful about who speaks at the funeral/memorial service. A very important person was offended that he didn't speak at my dad's memorial, and my mother's brother aired the family laundry at hers.

No matter what your life experience is, you can never be prepared for the way a loved one looks as they fade away. I think that was the hardest. I keep photos of my parents on my desk the way I want to remember them, to help get the horrors out of my mind.

You're so right about the food: all of a sudden, my mom demanded vanilla pudding served with grape jelly (I now know that Friendly's does NOT serve it). She said that's the way she ALWAYS ate it. NOT so.

The caretaker receives all of the anger and rage from the dying. Mom yelled at me and dug her heels in whenever she could. She was lovely to my sisters, brother and daughter. I expected it, so I wasn't shocked. I convinced myself that it meant she loved me.

Thanks so much for your writing. I'm saving these articles for the next friend or relative who needs to know that they're not alone.

- Karen Spiro
Philadelphia

I wanted to thank you for the thoughtful and informative set of articles in today's Inquirer on hospice care at home. My wife is 67 and I am 70, and we're both currently blessed with excellent health and a very active life with family and friends, but you never know what tomorrow will bring. I appreciated the insights you provided on what it means physically and emotionally to provide care for a spouse in hospice. They are generally not discussed early enough.

I did want to suggest that it is important to let family and friends know as early as possible when a loved one is facing hospice care, including friends and coworkers from the past.

Over the years, we have had the opportunity to say "goodbye" to people whom we may have lost touch with, but were an important part of our work or personal lives at the time. I found that home visits to reminisce about the past and provide emotional and other support for the caregiver(s) was greatly appreciated by both the dying person and their family. No one ever said that they would prefer that I/we not visit. The last thing I would want to have on my mind when attending someone's funeral service would be regret that I hadn't made the effort to visit them in their last days. While not everyone may be comfortable doing this, I feel the emotional rewards are well worth any "discomfort" some may feel at visiting a person in their last days.

Best wishes,

- Larry Maltin
Dresher, Pa.

Thank you for your article about being your husband's caregiver during his last days. It touched my heart, as I, too, walked that path as my husband died of lung cancer five years ago.

Our daughters were 19 and 23 at the time, and it was a sadly enriching journey for all of us. I totally agree with your assessment that caregivers should be better prepared for the last week or two of their loved one's life. I work in health care, although not as a clinician, and tried to guide my husband's care all during his 15-month illness to assure as much continuity for him as possible.

Even with some of the best hospitals and physicians in the Midwest, as well as all of the ancillary services that my health system put at his and my disposal, no one ever told me how difficult it would be to care for him at home during his last days. A good friend was the hospice caregiver for her elderly mother, who was suffering from COPD at the same time that my husband passed. I confided in her that the last days are ugly. She thanked me later for being so honest with her and agreed that they were, indeed, ugly.

The mental pictures generated by those days stayed with my children and me for several years. Now I'm almost able to block them out. My heartfelt thanks to you for validating my experience and feelings in such an honest way. I came away from our family experience crusading for patient advocacy, coordination of medical care, and physicians being honest with patients and families about end-of-life decisions.

And I must ask - a day or so after your husband died, did you find yourself walking through the house picking up all evidence of his illness and throwing it into trash bags? My daughter and I caught ourselves doing this - throwing cancer out of the house. It was the first of many experiences that helped us start to heal. We didn't realize that healing would take so long.

God bless you and your family!

- Gail Powers
St. Louis metropolitan area

Your article in The Inquirer today was beautiful. My father died last year of esophageal cancer, ten days after he was diagnosed. My three siblings and I were all able to be there and help. I wanted to share some of our experiences.

Popsicles were a favorite of his in the end. He was a tall man (6'3") and we had to get an extra long hospital bed, and per hospice's advice we kept the room dim with soft music playing. The hospice nurses also told us that even though he might not seem responsive he could still hear us so someone was always with him and we chose our subjects of conversation with care.

Thank you.

- Mary Pat Otte
Gladwyn

Beautifully done! You have compressed the contents of several books into very readable, personal, sensitive, factual articles. Congratulations for bringing the subject out of the closet into the light of day.

I went through it all exactly two years ago when my former husband was dying of cancer. My regret was not spending more time comforting him. It felt awkward for me, as his former wife, but I should have put all that aside and held his hand more, rubbed his back more, etc. I was very busy taking care of the logistics of doctors' appointments, food, care of his cat and doing his laundry - all the practical stuff which had to be done, and I was the person he chose to help him to the end. My present husband was very generous with me and my time, knowing I still had a very strong connection to the man I was married to for 33 years.

I rediscovered doughnuts to help comfort myself when it was time to put him in the hospital hospice unit, and after his death, I relied on massages to relieve the stress that I had built up over three months and the loss of this man I still loved.

Also, it was good to point how useless it is to attempt to feed dying people "good, healthy" food. I say, eat junk, lots and lots of it. Eat whatever you want. Put ice cream on top of pizza if it will taste good and make you happy.

We talked about everything, and all was prearranged when the time came. I have been a legal secretary most of my life, specializing in estate planning and administration, and I know what is necessary to take care of many aspects of personal business that need to be addressed before and after a person dies. It was very useful knowledge.

I am also writing a book about end-of-life planning, although I have not focused on the issues you addressed. I especially liked the line: "many families share a common charade." How true.

Good job!

- Jeanne C. Hoff
Jeffersonville, Pa.

Dear Stacey: It was with great interest that I read your article in today's Philadelphia Inquirer. It was almost a relief to be acquainted with stories from others who have had an experience similar to my own.

In April 2010, I resigned from my position (career) as an assistant vice president for Pfizer Pharmaceuticals to care for my terminally ill father. My colleagues called me "crazy" for giving up a career that spanned more than two decades of hard work and sacrifice. As a single woman, never married and with few interests (other than my work), the loss of my life's calling has been almost impossible for me to comprehend even to this day. However, I always knew that in the end I would have to live with myself. As such, the decision to give up my work and become a full time caregiver was the right thing for me to do, and I will never regret that decision.

My father had been ill with lung disease for many years, and I had been his sole caregiver throughout that entire period. The last eight months of his life, as he drew nearer to death, were very difficult for him and the entire family. With only minimal support, I remained on duty 24/7. I managed daily hygiene and an endless stream of medications, administered oxygen and breathing treatments, prepared special meals for hand-feeding, washed mountains of laundry, made many midnight runs to the hospital emergency room, and made sure that he had every possible comfort that was within my reach.

I spent my nights on the floor next to his bed, jumping at every sound and symptom, and rarely managed more than a few hours of broken sleep.

My father and I also spent many of those long nights talking about his life. First, his painful early days as a child growing up during the Depression, only to be drafted into WWII as a young man of 17 years of age. During his time with the U.S. Army Engineer Combat Group, he participated in some of the worst fighting of the war in Europe: Normandy Beach, the defense of Ardennes, and the Battle of the Bulge. Upon his discharge from the Army, he immediately enlisted in the U.S. Navy and spent 18 proud years in the Submarine Division, followed by an additional 20+ years as a civilian employee for the U.S. government.

He also spoke of his long-deceased parents and nine siblings, his marriage to my mother, the birth of his first child (my older sister), and finally of my birth. At his funeral, one of the military honor guard mentioned that my father must have been a true fighter. I could only respond that "my father wasn't a fighter, he was a warrior." They, too, cried as they laid him to rest. My father was a strong, sincere and down-to-earth man. He deserved to be well-cared for.

I'm grateful to the home hospice staff who assisted with the last month of my father's care. They made his last days more bearable. I admit, however, that I was unprepared to be alone with my father the first time he suffered a major seizure in the predawn hours just a short time before his death. I found myself running through the house in the dark to find morphine, which until this time I had resisted administering. I cried openly and almost hysterically as I placed the drug in his mouth, all the while telling him that he would soon feel better, all the while knowing that I had just set something in motion that would not be reversed. Almost to the minute, he quietly passed 24 hours later with a contented smile on his face. I will leave this earth, however, questioning whether I made the right decision that day, and only wish that medical personnel/hospice staff could have been there to guide what was taking place.

I don't think that my story is unique, but all the while I cared for my father, my mother was in a similar state and required a similar level of care. Day and night, I literally ran between rooms caring for each of them. During the few quiet moments I had each day, I ran errands, did grocery shopping, maintained our home, and worried about what life would be like when my family was gone.

I don't know how many people appreciate the enormous sacrifices made by thousands upon thousands of caregivers each and every day (and night). For me, it has been an honor to provide care and love to my father as he approached his last days. I continue now to do the same for my mother, and feel equally honored to have such a prominent role in her care.

I realize that my life has been changed forever. There's nothing that can erase or ease what I've witnessed and continue to witness on a daily basis. I only hope that caregivers can receive the support and love that they, too, deserve, as they also lose parts of themselves in the process of helping their loved ones on their journey.

Thank you for your story. As a result of it, I don't feel so alone today.

- Bernadette Maida
Philadelphia

I just wanted to reach out to you and let you know that your story touched me as my husband died on 3-24-10. There are so many questions that physicians won't answer and they tell things that aren't true and it is such a difficult journey.

My question to you is have you thought about writing about what happens to us caregivers after there is no one to take care of? It leaves such a big empty hole in one's life. Just because someone dies the relationship does not end.

Hugs to you as there are no right words to say.

- Marsha Hale
Litchfield Park, Ariz.

About two years ago I became a hospice volunteer in the Crozer Keystone Health System program, and Sean Curry was my first patient. Reading your achingly poignant words just now took me totally back to those life-changing months.

I'm 69, still a volunteer, and my Wednesday afternoons with my current patient are the focus and high point of my week. In many ways, those hours are life in its most intimate and true form.

Sean was 39, married, and father to two preteen children. Like your husband, he had [glioblastoma, a brain tumor], and he was in Stage IV when we met. While my role involved little of the arduous physical aspects of caregiving, I was with him through the inexorable degradation of his mental and motor skills. It was a difficult baptism into the program, but I knew it was the gift of a lifetime. To be direct, I felt God's call in it.

Sean, by his own admission, had never been fluent in the language of the heart. It's not so unusual for guys, as I'm sure you know. But when it was just the two of us there in his living room (or, in the early days, taking halting walks around the neighborhood in his bathrobe), he responded to my pursuit. Having recently re-watched (the movie) My Life, I decided to invite Sean to record his thoughts on video as a legacy for his young children. He agreed, and his wife also gave her tearful assent.

The first one, a few words of appreciation to his supporters, is still up on YouTube:

http://www.youtube.com/watch?v=2fdfEj5kkNQ We did several others which were never posted: one talking about his time growing up, another reflecting on the work he had chosen, and a final one filled with words about - and to - his kids. We never got to the one I had hoped would round out the series, his thoughts on love and its importance in life.

Thank you for writing so movingly and honestly about such a private experience, Stacey. I'm a bit late with my devotional time today, and will add you and your family to my time with the Lord.

Hugs from a total stranger out here in Villanova.

- John Dallas Bowers
Radnor

Hi Stacy,

That was a great article that really hit home. It is amazing!!!!!!!!!!!!!!

I lost my father, Ron Kratzer, to a stage 4 glioblastoma five years ago. He just retired as a teacher of 40 years-plus in Lower Merion. Without getting into detail, in August he was diagnosed. They removed the front tumor the next day. The tumor was so aggressive it grew back through chemo and radiation. Five months and he died on February 8th.

I remember being in Penn Hospital and I asked the doctor a question. She responded, "The answers to all your questions are bad." Then the image of the brain where his tumor grew back. I remember literally falling out of the chair.

We did home hospice as a family. I did most of the lifting towards the end with my mom. Luckily I am 6-2, 245 and a weight lifter. Without that, we would have needed hospice.

It was horrific, but we loved him so much. He did not eat or drink or talk for seven days, and we were changing him in the bed. I would talk to him telling him what I was doing and what to do.

Then out of nowhere he patted me on the back and clear as day said, "Take your time, son." He passed the next day with my mom, my sister and myself hugging him.

Please pass this on the Jeff's family, and again great article.

- Todd Kratzer
Ambler

Dear Stacey,

My deepest sympathy for the loss of your wonderful husband, my gratitude for all your articles in the Monday, April 4, Health & Science section, and my admiration for your strength both during the process and now, afterward, to manage to write these excellent articles.

Public schools teach sex ed or, more generally, health ed. They ought to also teach death ed and geriatric ed.

Your writing dredged up memories and emotions from the passing of my father in September 2007 at age 81. We lived in California, so our story is a bit different.

Mom and Dad lived in a country-club-style over-55 community, which had some support for the ill and aged, but not a great deal. In the later years, Mom had to manage Dad's diabetes for him because a stroke had made him unable to do it himself. I lived a half hour away with my husband and only daughter, who turned 15 in 2007.

In January 2006, I took my first full-time job in the fourteen years since my daughter's birth. It was somewhat rough on the family even before Dad's final illness entered the picture. In September 2006, Dad started having frequent problems with shortness of breath. It took about three months to diagnose it as chronic congestive heart failure, but by that time, the shortness of breath was almost continual. He would even wake up at night struggling for breath. It was hard on Mom, who was two years older than he.

January 2007, when the diagnosis finally came in, began a difficult cycle. Dad was hospitalized for replacement of two heart valves. He came out of surgery delirious and had to be restrained from ripping out IVs. He couldn't manage a nurse call button. He couldn't adjust his own position in the bed or fluff his own pillow. The hospital informed us that they had to discharge him even in that condition, that he didn't have the strength to go home and needed to go to a convalescent home. No one prepared us for this. I got them to hang on to him an extra day while my husband and I ran around like maniacs locating convalescent care and while I bullied Mom into permitting it. I bullied her because she wanted to take care of him herself, but I knew from experience with his stroke years before that she was not capable of it.

After a few weeks, the convalescent home insisted on discharging Dad, even though he still couldn't walk, and still had trouble even using a nurse call button. His appetite had also declined. Mom refused to hire in-home help, and I bullied her into it, and hired the help. While he was home, Mom began to see why she did in fact need the help, although she still hated having it. Dad was home less than a week before he landed back in the hospital with more shortness of breath. That happened in the middle of the night. Dad refused help, Mom called me, I talked to Dad and begged him to go to the hospital.

After replacing Dad's defibrillator, we went through the same cycle of hospital discharge, convalescent home, and home care, although this time with less resistance from Mom. Dad was hardly eating anything, going from thin to gaunt to graunter. He couldn't walk. He still couldn't manage a nurse call button. I learned how to help the nurse pull him up with a draw sheet. I helped him get his penis into the urinal bottle. I fetched the nurse and helped lift him onto the toilet for bowel movements. I assisted the physical therapist in getting him up for walks down the hall. Dad had difficulty swallowing due to the earlier intubation during surgery. I shepherded the process of getting the speech therapist to treat it, and the process of getting him the right textures of puree and thickened water. I fed him. Even in that condition, hospital and then convalescent home insisted on discharging him.

Finally, Mom realized the impossibility of caring for him herself at home. In deference to her hatred of having help intruding in her home, she chose to move him into assisted living. I helped her locate a fine home.

The night after we moved him, he had a bad blood sugar episode and landed in the hospital again. After a fourth hospitalization, we all mutually decided to hire hospice. At the home he was in, he had in-house caregivers, plus hospice visits, plus home care caregivers I hired in addition. Mom spent every single day sitting at his bedside all day. She brought her lunch. I went there before and after work. Dad was there in this state for about four months!

During those four months, he slept in a hospital bed. He never mastered the nurse call button. He slept more and more. I got a cellular modem so I could work from his room. I had to spend the day there in order to be there during his ten minute wakeful periods.

He was incontinent, which generated massive amounts of stinky laundry in spite of diapers. The home did some laundry, but I did extra loads of laundry myself. I helped caregivers pull him up when he slid down, using a draw sheet. I helped change the pads under him-quilted cotton above, waterproof lining below. I helped change and wash him. I helped him with the urinal bottle whenever he felt up to it. I bought the hospital bedsheets, and helped aides make the bed over.

The home got him a wheelchair to take him to meals until he got so bad he couldn't go to the dining hall. I bought him a cushion for it. Wheelchairs are uncomfortable. Dad developed bedsores. I bought him eight pillows for propping him to relieve the pressure. I made notes to assist with communication from caregiver to caregiver. When Dad first got to the home, his appetite picked up for a few weeks, but dwindled again rapidly. It was scary watching him waste away. I kept him supplied with oxygen. When my daughter had a major role in a musical, I arranged to get Dad out to see it. The oxygen bottles weren't delivered on time, causing a big push on my part to get him enough oxygen to get out to the show.

In the end, Dad passed peacefully in the middle of the night in only the presence of a hired caregiver. I think he was unable to pass in front of loved ones. He didn't want to leave us.

Unfortunately, the strain of caring for him and my Mom, who had trouble coping with day-to-day life during all this for all the obvious reasons, broke my marriage. I left my husband. My boss gave me more moral support than he did. I had heard of this happening before, and had always wondered why death and tragedy didn't draw people together and make families stronger. Now I know.

At least the process drew my Mom and me closer together, and introduced me to marvelous caregivers, nurses, fellow patients and home residents, and their families.

We need better education so that people don't feel like failures when they need help. If you expect to need help from the outset, it is easier to accept help. Denial is dangerous both to the patient and to the caregiver.

Thanks for your attention, and for bringing this issue to the world's attention,

- Robin Schaufler
Swarthmore

After years of suffering, my elderly mother died of Alzheimer's, at home, under hospice care, in mid-December. Although the hospice workers were angelic and provided a good deal of support, material and emotional, in the end, and at the end, it was I who saw the sheer ugliness of death that you describe so poignantly. As you wrote, few know "how it feels to give raspberry-flavored morphine when you know you're choosing between pain control and length of life." And few even want to hear my description of those awful days.

May it ease your grief at least somewhat to know that your brave and perfectly chosen words have helped to ease mine.

- Sherry
Philadelphia

Thank you so much for your articles on caregiving. My Mom just passed away March 17, 2011, from ovarian cancer. I wish your article was in the paper two months ago. Even still, reading them yesterday made me feel like someone understood what I had gone through. I still feel numb, unable to really feel the impact of my Mom's death because I think us caregivers become numb so we can just survive each day.

You are so right that no one talks about the dying experience and when you are going through it, you are anxious just anticipating what will happen. And when you said you "prayed the bowel movements would come when the aide was there," I felt some of my guilt leave me as I asked for those same things.

I hope you and your sons find comfort and continue to honor your husband's memory by helping others. This article was a blessing for me....

- Carol Lambard
Yardley

Hello Stacey,

I just finished reading your article about your husband's passing and like many others, was moved to tears as a flood of memories came rushing over me related to my wife's passing nearly two years ago. My wife died of breast cancer after a fourteen year battle. I was holding it together until I read about the 'office chair' because, like you, I cared for my wife at home (as was her fervent wish) and wound up improvising by using an office chair to shuttle her from our bed to the bathroom until that too, became impossible. Your reflections and account rang so true to my own experience that I just had to let you know how important and valuable I think it is that you summoned the courage to write about it so soon thereafter. My condolences to you and your children on your loss. Unfortunately, you are now a member of another relatively little discussed club of premature widows and widowers with its own unknown initiations and experiences that I was equally unprepared for. I had the wonderful privilege of sharing my wife's story of her last month with a neighbor who regrettably was in the same situation and about to enter what she knew would be the last few weeks or so of her life and desperately wanted to know about all the things you wrote about to help her family prepare - how incredibly thoughtful and selfless of her!

Fortunately, time is a great healer and, as I was counseled at the time, you and your children will be fine in the long run. It will not be an easy road at times. Remember to take good care of yourself in addition to your children - they need you to be around for them. You will always remember him and treasure your time together. But life has a remarkable way of moving forward, and so eventually must we. I wish you the best.

- John Szum
East Walpole, Mass.

I am normally not in the habit of firing off e-mails to journalists whose articles I have just read, but in this case, I felt compelled to write to you.

I lost a husband back in May of 2000 to circumstances very similar to your late husband's. Mine was diagnosed in early April; lung cancer that had gone to his brain. All they could offer us was palliative care, and a bit of radiation to perhaps shrink the brain tumor so the seizures would lessen. He spent the better part of April in the hospital due to the fact that his lung collapsed after the biopsy was done. When he came home, right before Easter, I asked his doctor for a timeline, even though deep down inside I didn't really want to know, but felt I could be better prepared if I did. (Ha.)

He was home for about a week when we began hospice care, even though we were told that he would probably have about four to six months. During that time, we spent hours talking about "things" - when he was lucid or not sleeping. I felt that we aired a lot of things that needed to be aired, and made plans for my down-the-road. It was hard work, and watching his decline was the hardest.

Still I felt we had some time to share and that we would try to make the best of it. He was still ambulatory, eating OK, and "with it" most of the time. Nothing prepared me, when on the evening of May 10th, I ascended the stairs to find the bedroom light still on, the TV on, and him - lying there. Gone. What had happened to those four to six months? I felt cheated. But now, reading your account, I realize what a good thing had happened to him.

That summer, I went to my doc for my check up, this being the first time I had seen him since my husband's passing. He asked me if I had any questions, and I said, "Just one: 'What happened?' " I will never forget his reply. He said, "Rockie, he did you a favor." And so he did.

His degree of suffering and pain was nowhere near what so many cancer patients experience, and therefore, neither was mine. After reading your story, I just had to write to tell you how moved I was by your article.

Eleven years later, and I am happily remarried (never in a million years thought THAT would happen), a grandmom of two gorgeous little girls, stepmom to my husband's two boys and have step-grandchildren. My son and his new bride are expecting one in November. So, life does go on, and happiness prevails. It just didn't seem possible at the time that I would ever have fun or live again.

Best of luck on your journey through all of this.

- Rockie Hughes-Walsh
Doylestown