Barbara and Cindy, Mother-Daughter Team

Cindy is a dear friend whom I met around 1980.  Together we’ve experienced many of life’s milestones — single life, finding our Mr. Right’s, weddings, married life, having children, watching them grow, and caring for our parents.

Our mothers both spent their final days on hospice but their hospice experiences were different in many ways:

• One woman received hospice care in a hospital, and one in a board & care home.

• One woman was on hospice only 10 days versus over two years for the other.

• Her mom, Barbara, was younger than my mom by 23 years, and didn’t have Alzheimer’s disease so she was aware of her hospice care.

• Cindy was a long-distance caregiver for her mother while I lived only five minutes away from mine in her final months.

Cindy shares an intimate portrait of her mom’s end-of-life care with us in the following interview.

*************************

I’m very sorry about the loss of your mother, Cindy.  It is so kind of you to share your personal story with us, since it surely was a painful time for you and your family and probably hard to revisit. On behalf of the TLeC community, I want you to know we greatly appreciate your willingness to do this interview.

Could you give us a synopsis about your mother’s medical history and at what age she was admitted to hospice care?

My mom was admitted to Hospice care at the age of 74, after numerous bouts of cancer. She was diagnosed with breast cancer at the age of 59 and was diagnosed 10 years later with carcinoids. Carcinoids are self contained cancerous growths that cannot be treated with chemotherapy. The only treatment was surgery to extract the cancerous growths by cutting out sections of the small intestine/bowel where the carcinoids were growing. She lived with this cancer for approximately 5 years until it metastasized into Carcinoid Syndrome and Peritoneal Carcinomatosis, which ultimately took her life on October 10, 2008.

Did your mom receive hospice care at home, in a hospital or nursing home, or in a separate hospice residence center?  Was the hospice company part of a large hospice corporation or a smaller “mom and pop” type of hospice company?

Mom received hospice care from Regional Hospice in a hospital in Danbury, Connecticut. She was seeking treatment in that hospital because my brother, who is an MD, had privileges there and he could monitor her care more effectively. When the cancer progressed, it was the natural choice to move her up to the 4^th floor of the same hospital where they had hospice care. She was on hospice for 10 days before she passed.

Was the idea to utilize hospice care from your mom’s wishes or did her doctor or someone else recommend it?

Mom’s doctor and my brother had presented the idea of hospice to Mom while she was on the surgical floor, seeing no further options for treating her cancer.

Had you or other family members investigated local hospice care options before this?

We had never discussed hospice previously.

How did your mom respond to this difficult decision?

It was not my mom’s wish to go into hospice because she was in denial of dying. While I was there, she resisted the idea of going to hospice, telling the MD, “But I did everything I was supposed to do; I had all of my scans.” There was a naive belief that if she did her part by being proactive for her medical care, she could keep the cancer at bay. She wasn’t ready and that broke my heart. I reassured her that she had done everything possible, but through no fault of her own, the cancer had taken over.

Was your whole family behind the decision 100% or was there any resistance to it?  If there was resistance from some family members, how did you manage to come to a consensus?

While I was still in California, I was in contact with my brother and sister-in-law who were with Mom 24/7 in the hospital. It was my sister-in-law who called me and informed me that I should come home because Mom would be going into hospice the next day. I remember I was sitting alone in my car outside of a bowling alley where I had driven my daughter to interview for her first job. I was in disbelief at first. I asked if I needed to come out immediately because I had already booked a flight to visit Mom in 2 weeks. I wanted my sister-in-law to tell me that Mom would be okay until then. Talk about denial! She convinced me to come out immediately. I was crying when my daughter came out from her interview; I broke the news to her on the way home.

Can you describe what you believe your mom got from this end-of-life care?  Or what Barbara expressed to you if she was able?

Mom expressed that she dreaded the “death watch”. She knew when we all came in from different parts of the country that we were there to say goodbye. She had told my brother and sister-in-law before we all arrived, that that’s the last thing she wanted, and she didn’t want to linger. Few of us spoke about her impending death directly with her and that’s something I regret tremendously.

We sat around her and reminisced, telling stories of our childhood (there are 4 of us siblings). I marveled at her memory and coherence! She remembered things my siblings and I couldn’t begin to remember. I knew she was the one in the family who carried the memories and when she died, the stories died with her. We showed her albums of when she was a young mother, vibrant and full of life, and she reveled in looking at the albums. She really enjoyed reminiscing and seeing herself in better days.

Barbara, September 2005

She asked how her grandkids were so I told her a story of how difficult it was for my oldest son to go off to college. Upon hearing that he had cried the night before we left him at college, Mom welled up with tears. When I saw her tears, I was quick to reassure her that he was very happy now. In hindsight I believe her tears were probably more about never seeing her grandson again, rather than her sadness over my story, and I have tremendous regrets for not asking her about that.

Can you tell our readers more details about the day-to-day “hands on” hospice care your mom, Barbara, received?

The day to day hospice care was a pleasure. There were so many wonderful professionals who looked in on Mom, as well as our entire family. They took our needs into account as well as hers, tending to our physical needs and emotional needs. They offered physical comforts such as rollaway beds, private family rooms to grieve, computer access to stay in touch with our lives outside of hospice, counseling, showers, food, etc. They met with us in a family room explaining where she was in the dying process and gave us booklets explaining what to look for and what to expect. They suggested that we might want to stop our bedside vigil and let Mom have some time to herself in case she was ready to cross over, but didn’t want to do it while we were there. It was painful for us to feel like we were leaving her alone but we took their advice. The very first night that we left her alone, she died. Hospice had given us good advice.

Can you discuss the pros and cons of your family’s hospice experience?  Overall, did hospice care meet your expectations?  Exceed them?  Disappoint you in any areas?

The pros definitely outweighed the cons when it came to hospice, but there were a few cons worth mentioning. Ironically, one of the biggest disappointments was that they didn’t provide real tissues; hospital tissues rub you raw! We had to bring in boxes and boxes of Kleenex. Another disappointment was there were no outside gardens or tranquil place to go to with your grief. I find nature and fresh air do wonders in healing grief and transporting you away from the hubbub and technology inside of a hospital. Where there is so much death, it would be a welcome escape to immerse yourself in life.

My most shocking revelation was when hospice couldn’t control my mother’s pain and wanted to do surgery on her. I was not prepared for this at all! I pictured hospice as a serene place where people go to die and where there is absolutely NO pain, and no traumatic surgeries. This was not true in my mom’s case. In hindsight I know it was the right thing to do, but it was painful to watch. She was vomiting bucket after bucket of bile which kept her in a constant state of pain. When they suggested doing surgery to put a gastric tube in her stomach to drain the fluid and thus stop her vomiting, I was against it because my mother feared being intubated and this would be more trauma to her body. I wanted her to die in peace. I resisted until my siblings and the doctor assured me this surgery would bring her peace, which it did ultimately. I never imagined that hospice would perform surgery because I see that as a life-saving step. Ideally I would have liked a pamphlet or something that spelled out the various functions of hospice and had it explained to me that sometimes achieving a peaceful state might require something more aggressive than medication.

Another pro was when we got the call in the middle of the night to say Mom had passed, we were greeted with such care and tenderness from the hospice staff as we entered her room to say goodbye. I found I couldn’t say goodbye and leave her alone in that hospice bed. It was unbearable for me to walk out with her still lying there, cold and alone for the last time. In my intellectual mind I knew Mom was gone, but in my emotional mind I couldn’t stand the idea of leaving her alone. I approached a hospice nurse whom we had grown close to, and asked her to please stay with Mom. She understood what I was feeling, saying she wouldn’t leave her. I desperately needed to hear that, and it gave me great comfort.

Do you have any words of wisdom you’d like to share with other families that may be using hospice now or considering it for their loved ones in the near future?

Words of wisdom . . . hmm.

~ Bring your own Kleenex.

~ Give your loved one “space” to die by not hovering over them 24/7.

~ Don’t engage in fights with family members during hospice, recognizing that if they are acting badly it is likely a symptom of their grief .

~ Don’t be afraid to talk to the dying person about their fears/beliefs about dying.

Would you recommend hospice care to other patients or their families?

I absolutely would recommend hospice to anyone who was losing a loved one. It is comforting on so many levels to the patient and his/her family.

Cindy, your story brings tears to my eyes!  You share many important lessons for everyone reading this interview.  Not the least of which is to bring tissues!

Thank you again.  You were a blessing to your mother and may the happy memories of her remain with you and bring you peace.

Cindy is an M.F.T. who lives in California with her husband, children and dog.

*************************

This is Part 5 in a series on Hospice Care. The previous four parts in this series can be found by clicking on the links below in the section “Related Posts.”

This article is Part 4 in a series on hospice care.  Please see the section below entitled “Related Posts” for links to Parts 1, 2, and 3 and to read more on this topic.

First Time Around It Was “No Go”

I was impressed with the way my dad’s final months were made more comfortable physically and emotionally via hospice care, as well as by the support I received from them. I wanted my mother to receive this same comfort care.  She was already in the middle stages of Alzheimer’s disease when my dad passed away, and I knew I really didn’t want to subject her to any more hospital stays in her lifetime, so placing her on hospice care was the answer for me.

I asked the hospice company to assess her, assuming they’d admit her to their service.  Wrong!  The hospice company told me she didn’t meet the strict criteria for admittance as a patient.  In one way I was glad that she didn’t qualify for hospice but, on the other hand, I was somewhat surprised and let down.  While disappointed, I learned their parameters, and also knew it was only going to be a matter of time before she would meet the criteria.  And in April of 2007, she did.

A Different Experience Due to Length of Time on Hospice

The difference between my mom’s and dad’s hospice experiences was due for the most part to the length of time they each received hospice care.  It was provided by the same hospice company, but my father was on hospice less than six months, while my mother was on hospice for approximately two years.

As a result of her extended time on hospice and her continuing decline, she utilized these additional services:

• The hospice company provided more medical equipment for my mom:  a hospital bed with an alternating pressure air mattress, a wheelchair, incontinence supplies, and a medical hoist to help the caregivers lift her from her bed to wheelchair and back again.

• The hospice company consulted with wound care specialists several times who assessed and suggested alternative treatments for the bedsores that appeared despite the excellent care she received. (Yes, bedsores can develop even when patients are very well-cared for. Read more about this subject here.)

• A dedicated hospice volunteer visited my mom once a week and helped my mom participate in arts & crafts or music as much as she could, read books to her, talked with her (even though it was pretty one-sided due to mom’s aphasia), brought flowers and little gifts, and just kept her company if she was sleeping.  These “quality time” visits were greatly appreciated by me, since I couldn’t be there every day.  The volunteer also got to know our whole family and we still are in touch months after my mom passed away.

• When my mom experienced her first ever tonic-clonic seizure, continuous care was provided by hospice for about the next 48 hours.  This means hospice staffers gave her intense around-the-clock care until she returned to “normal.”  This was only offered by hospice as a short term level of care and reevaluated each day, because it is also based on strict Medicare guidelines.

Caregivers vs. Hospice Staff in “Territorial Wars”

An interesting thing occurred during the treatment of my mom’s bedsores.  The board & care caregivers and the hospice RN’s pointed fingers at each other a few times, insinuating that it was the others’ fault that my mom’s bedsores weren’t healing quickly enough.  The caregivers felt the RN’s needed to provide more frequent wound care; while the hospice RN’s felt that the in-home caregivers didn’t turn or reposition my mom often enough since she was bedridden.  It was subtle verbal warfare that I heard both sides of.  Although it didn’t became a big brouhaha, and never went further than a few words spoken privately to me on occasion.

It’s important the staff of the board & care and the hospice nurses easily co-exist and communicate well with each other.  And they should not get into “territorial” wars over who the patient is getting “better” care from.  I knew they all wanted what was best for my mom, but they needed to stay focused on that and not start pointing fingers out of their frustrations over the bedsores.

If you notice this phenomena occurring during your loved one’s care and it’s getting to be more than you want to deal with, contact the hospice team manager and/or board & care administrator and let them get it ironed out.  With mom’s medical condition I believe her bedsores were lingering for any number of reasons, and I never blamed the caregivers nthe RN’s.  All of us were a “village” providing the best care possible for my mom.  Your family could find themselves in the middle of staff turf wars, too, over various caregiving issues, so please be aware.

More Lessons Learned from The Two Hospice Experiences

As I wrote previously, I might have interviewed other hospice companies if I had known in the beginning there were different types to choose from.  Some time after the first year of my mom’s hospice experience, I decided to interview a smaller “mom and pop” type of hospice company a close friend (who is also an RN) recommended.  One benefit was that the nurses’ caseloads with that company were  smaller, so their patients theoretically could receive more frequent or longer visits.  This benefit appealed to me and I thought over the pro’s and con’s of each company for several weeks.

I decided to stay with our original hospice company.  I didn’t want to invest the additional time and energy it would take for a whole new team of hospice workers to get to know and initiate care for my mom.  I realized no hospice company is perfect and it just didn’t seem worth it to make a change at that point.  It turns out this decision to keep the status quo was just a few months before my mom died, and that fact made it an even better decision in hindsight.

Every hospice patient and their family’s experience depends greatly on the individuals on the hospice staff.  Although the doctors, RN’s, social workers and home health aides that cared for my parents were all employed by the same company and therefore had the same goals and philosophy, they each brought their own personality and style to the job.  These can vary greatly and the patient’s family should be sure the staff’s style of communicating and caregiving match what you perceive your care recipient’s and your family’s needs are.

For example, the social worker assigned to my dad’s case was a treasure.  As I wrote in a prior post, she met me in person at the board & care several times and checked in by phone with me regularly to offer support to us on a continuing basis.  When my mom was admitted to hospice two years later, I was pleased to learn the same social worker was assigned to her case.  Later on she left the hospice company and the new hospice social worker approached her job very differently.

This new social worker never called to introduce herself nor made any contact with our family until I called the hospice company with a question that fell under her bailiwick.   She then promptly met me at my mom’s board & care and provided the needed information, but the “connection” and compassion I felt immediately from the prior social worker was missing.  Yes, she technically fulfilled her job duties by efficiently responding to my query, but that was it.  She seemed harried and her demeanor just wasn’t a good fit with mine.  If I needed more help from the social worker, I would have requested someone else on the hospice staff.  Like any paid service, we as consumers have the right to ask that our basic needs be met.

I recommend patients and their families be open to the concept of hospice care.  It is a scary word associated with death and hard to face, but it provides a positive end-of-life option.  Learn about it. Interview local hospice companies before making a decision on which one to use.  Talk with your aging parents about their end-of-life thoughts, plans and desires. Educate your whole family about this phase of life and how hospice can help manage so many facets of it.

I feel very fortunate that both of my parents were able to die with no pain, peacefully and with dignity.  I wish everyone could leave this world in that way.  Don’t you?

If you or your loved ones have had experience with hospice care, please share with us in the comment section below.

And check back soon for more articles in this series.

I could try to write a post about hospice and therapy dogs, but no words I write would come close to illustrating the intertwined human and dog worlds that are revealed in this beautiful video.

Kleenex Alert — this is sure to touch your heart!

If you have trouble viewing the video, click here.

Baxter has been referred to as the “Angel of Hospice” and the world’s greatest therapy dog and I can clearly see why.

Learn more about Baxter at his website Moments with Baxter.

Update 10/17/09: I’m sorry to have to share with you the message I found posted on Baxter’s Facebook profile today:

“Baxter, the world’s best, most devoted, and oldest therapy dog, 19 years and 6 months, eased peacefully from his life on Friday afternoon, October 16th.”

My heart goes out to Baxter’s loving family.  I am so sad, yet very glad I got to “know” him, even if from afar.  He is sure to be an inspiration to others for many years to come.

If you are concerned about seniors (or “Golden Oldies” as I call them) and their pets, here is an article I wrote about what to do if your Golden Oldies may not be able to care for their pets any longer.

This is Part 3 in a series on Hospice Care.  To read the first two parts, please click on the links under “Related Posts” below.

*****************************

To everyone in the TLeC community, have a great weekend!

Please be aware I am not a health care worker, nor an expert on hospice and end-of-life issues, but I am sharing my family’s hospice experiences with you in the hope it will lead to more knowledge and a greater understanding of this aspect of life.

This is Part 2 in a series on hospice care.  You can read Part 1 here.

Admission to Hospice Care

I probably shouldn’t have been surprised when the board & care administrator suggested Dad be evaluated for hospice care.  It was just after his 98th birthday after all! While he was in above average shape for someone that old, he had deteriorated physically and mentally in the preceding weeks.

Plus the administrator actually listened to my words and my true but unspoken desires underlying the words I’d said in the months prior: “I don’t want my father to ever be put in a hospital again.”

Why did I feel this way?  Two years before I’d witnessed how confused and agitated being in the hospital and medications made him when he had hip replacement surgery.  And I didn’t want him to go through that mental angst and the physical discomfort hospital stays usually cause in the elderly.

Not every senior is placed on hospice just because a family member asks for an assessment.  A nurse examined and interviewed us both as one part of the admission process to see if my dad met the eligibility guidelines.  My dad’s doctor did an examination, as did the doctor affiliated with the hospice company.

Hospice doesn’t pay for all of your loved one’s medications, but it did cover all medications relating to the diagnosis hospice gave him, end stage cardiovascular disease. My father wasn’t taking much medicine at all, so the cost for the non-covered medication wasn’t a financial burden for us.

I eventually saw how much the hospice care bills were, and they were very expensive, but at no out-of-pocket cost to us — except for the monthly Medicare premium taken out of his social security check.   Payment for hospice services is covered through Medicare and most Medicaid programs. Most, but not all, private insurance programs offer a hospice benefit. It is important to research whether your health insurance coverage offers hospice benefits and determine exactly which services are included. Some hospice companies will help you with this analysis, too.

I didn’t interview more than one hospice company.  I just went with the one that the board & care recommended.  I didn’t realize I could have chosen any one I wanted to, but I liked the people I met through this hospice company and my instincts said to proceed with them.  I wasn’t disappointed.  As time went on and I learned more about hospice, I became aware that all hospice companies are not alike.  I happened to select a large, nationwide hospice company, however there are smaller, “Mom and Pop” types of hospice companies as well.

If I was going to do it all again, I might have interviewed more than one company just to get a feel for the various staff members, as well as to compare and contrast their approach to our family’s situation.  A hospice company is only as good as its staff makes it.  Like any service you are paying for (even if Medicare is picking up the tab in this case), make sure they provide good customer service and you are very satisfied with the patient care.  If not, look around until you find a hospice company that is a better “fit” for you and your Golden Oldies.

What Does Hospice Do When Your Loved One Already Lives in a Board & Care?

Hospice provided another entire layer of care for my dad.  There was a wonderful RN who would visit and examine him thoroughly two or three times a week.  A home health aide came every other day to bathe, shave and attend to any personal care he needed.  This was above and beyond the regular caregivers’ daily assistance in the board and care.  The RN would call me with periodic reports by phone about my dad’s condition and I was able to reach her (or her supervisor) whenever I had questions or concerns. There was also a detailed log book about my Dad recording every statistic about his health condition and medicines, contact information, and a detailed report for every visit made by each hospice team member.

Beyond patient care, phone calls were made to me on a regular basis by the hospice social worker, whom I also saw sometimes while visiting my dad.  She would call me every few weeks just to check in and see if I had any questions  or needed emotional support in any way.  The hospice company also had a chaplain who contacted me within a week of my dad’s admittance but I let him know we already had wonderful clergy to help us with religious and spiritual issues.  The hospice team (MD, RN, home health aide, social worker, chaplain, team manager) meet on a weekly basis in their offices to discuss each patient and update their care plan.

Hospice Philosophy

The goal of hospice care is to keep your aging parents comfortable and to maintain a decent quality of life while they are in their final stage of life. This philosophy is different than traditional medicine, in which health professionals strive to cure a person’s disease. Hospice services are not intended to speed up or prolong the dying process, but focus instead on relieving pain and other symptoms. Hospice caregivers are concerned with enhancing the quality of remaining life by keeping seniors as alert and comfortable as possible in a familiar environment with family and friends nearby.  Hospice care also helps family members manage the practical details and emotional challenges of caring for a dying loved one.

In Part 3 of this series, I’ll share more with you about my family’s experiences with hospice and what I learned during my mom’s final months.

Outside Resources:

The Hospice Foundation of America

Medline Plus about Hospice Care (A service of the U.S. National Library of  Medicine and the National Institutes of Health)

American Cancer Society

“Hospice” is an extremely emotionally-charged word.

It is something we’d prefer never to think about . . .  let alone talk about with loved ones . . . or anyone.

Through personally experiencing and observing hospice care for each of my parents, I slowly overcame my fears about hospice. And looking back now, I feel gratitude for the compassionate and comprehensive services provided by the hospice team for my elderly parents.

Before my first experience with hospice in 2005, these were a few of my preconceived ideas about what hospice meant:

• Putting someone on hospice care means their death is imminent. I was shocked by the suggestion of the board and care administrator that my dad be evaluated for hospice, since he didn’t have a life-threatening physical illness.   Wrong. A person doesn’t have to have cancer or AIDS to go on hospice care.  In order to qualify, a patient must have certification from two physicians that they have less than six months to live if his or her disease runs its natural course.  However, some people live for years while on hospice care. My father was only on hospice for a few months, but my mother received hospice care for slightly over two years.  Hospice services are reviewed every six months and renewed as long as it is medically called for.

• Hospice is a separate place the patient must move to in order to receive care. I thought I would have to move my father from his board and care facility to a another place where hospice care was provided.  I didn’t know exactly what or where it was, but that was my belief.  Wrong. Care can be provided in a patient’s home, hospitals, nursing homes, skilled nursing facilities or board and cares.  Yes, free-standing hospice centers are one alternative, but that is not the only location where a patient can receive end-of-life care.  The board and care my father was living in had a hospice waiver, so he continued living right where he was while receiving hospice care until he passed away.

• Once they’re on hospice, the patient cannot go to a hospital for any medical treatment. On the one hand, a major positive in having a loved one on hospice is that you are preventing the physical and/or mental anguish a hospital visit can create for a senior.  On the other hand, I felt like I was “signing my father’s death certificate” by putting him on hospice.  Wrong. In general, the hospice philosophy is to provide comfort to the patient and not to perform medical treatments to cure an illness.  However, the hospice nurses explained to me that if my father or mother needed to go to the hospital for any reason, I would simply take them off hospice service before they went to the hospital, and then I could re-enroll them for hospice once they came out of the hospital. Hospitalization never occurred while either of my parents were on hospice, but it is an option I didn’t know existed.

• Hospice care is only for the patient. Wrong — very wrong. While the hospice care team is patient-centered, the care extends to the patient’s immediate family, even for up to a year after the loved one’s death. After my father died, the hospice social worker kept in touch with me by phone and mail. The company offered bereavement counseling, support groups and workshops. All of these services are free. I didn’t feel I needed grief counseling from them at first, but as the one-year anniversary of my dad’s death approached, I decided to meet with the social worker that had kept in touch with me. This one-time counseling session helped me get some answers to questions that were weighing on my mind about my dad’s final hours. It was very valuable and helped me move along in the grieving process.

In future posts about the hospice care my parents received, I hope to allay the worries or misconceptions you may have about hospice care. And by sharing more, I hope it will encourage you to consider (and even welcome) hospice care for your aging parents if and when appropriate.

When you hear the word “hospice,” what do you think of?

Do you have other questions about hospice care you’d like me to answer?

Please write them in the comment section below or use the Contact form above to send them to me privately.