Thursday, September 24, 2009

Commendable Caregivers

I saw two new patients/families today worth noting. The first patient slept for most of the visit, he has Alzheimers and the overcast skies were not encouraging him to get out of bed. I met with his daughter "J" who shared their harrowing story. J has really stepped up to the plate for her dad. She moved up from Florida last fall to take care of her dad, after he left her close to 70 messages in 2 hours repeating the same thing. She knew something was wrong and advocated for him despite a healthcare system that would not take the time to diagnose him. She advocated for him even though he tried to kick her out. She pursued guardianship even as her siblings fought about who should be in charge and spread lies about each other. In the end, her dad was diagnosed with Alzheimers, she was named guardian, and she moved her dad into an apartment he owns. Her husband travels back and forth in the meantime. All this is commendable in and of itself. However, I think J's past informs her present. You see, J's dad beat her and her siblings throughout their childhood. He was emotionally unavailable during her adulthood. And even as she takes care of him now, it is not uncommon for him to bite, kick, or try to punch her. Yet J told me she feels it is important to do this for her dad. She said she has forgiven him; she is letting the past stay in the past. She said someone needed to step up to the plate and she knew her sisters and brothers wouldn't do it. So here she is. Her life has drastically changed because of this choice but J has no regrets.

This afternoon I met with a spunky lady, her hired caregiver, and her daughter. The patient has just returned to her home after a year of hospitalizations and nursing home stays. She is so happy to be back home! Her daughter has seen a big improvement in her mom since she's been back...the power of being in one's own home. This patient is very hard of hearing and almost blind so the daughter and I talked about what we can do to bring enjoyment to her days. I'm referring her for a volunteer, pet therapy, and music therapy, plus I'll be visiting every week. I talked to the daughter for awhile about family involvement. The daughter has handled all the details of her mom's care and transition back home. One would assume that she is the POAH but she told me that her brother is the POAH, in fact. She said that he really doesn't do anything other than sign the papers; he is content to leave the details up to her. I talked to her about this and she is at peace with her role. She asked, "Isn't this what daughters do?" Daughters are overwhelmingly the primary caregiver or decision maker for their parents but I don't think statistics lessen the impact of this role. Both of these situations are complex but at the heart of the matter, these daughters are doing their best for their parent, regardless of the toll it takes on them. It's beautiful to witness.

Tuesday, September 22, 2009

Matchmaking Update

A long time ago I wrote about a Matchmaking Family that had high hopes for me and their grandson. At the time I explained to the family that I could not date him for ethical reasons. This is and was true. However, I don't think that this grandson would have been a good match for me, ethical reasons aside; I chose not to tell them this. They were very disappointed and so, never imagining that I would be in this position, I told them that if we were both single a year after Bernie's death/discharge, we could think about it. I assumed 1) I would lose touch with the family and it would not be an issue and 2) I would not be single by that time anyway, thus illustrating why one should never assume.

Bernie stabilized within a month after that post and we discharged him from our program. I loved visiting him and his wife but the business of my schedule prevented me from ever dropping in on them to say hi. We did lose touch. A few weeks ago hospice chaplain Ron thought he noticed Bernie while he was visiting a patient at a nursing home but didn't have time to investigate. This morning (while I was adjusting to being back at work after 10 glorious days off) he told me it was indeed Bernie; he ran into Bernie, Mary, and their daughter last week and was able to catch up with them. I was caught off guard when he told me that Mary had asked if I was still single and wanted Ron to let me know that their grandson was still available. She specifically told Ron that it was more than a year since Bernie had been surely it would be OK for us to date. I could not stop laughing when he told me this! I think Mary wanted Ron to call me right on the spot when they were chatting. So flattering that this family would think this highly of me. Nevertheless, I think I'll pass. It was a nice way to start the day though!

Protect Insurance Companies PSA

Monday, September 21, 2009

ADEC certification

I received official word that ADEC (Association for Death Education and Counseling) has approved me to take the Thanatology exam. You may remember that I am starting to look at transitioning to bereavement and this certification is the next step. The test will be November 7. They sent me a study guide and recommended a few tomes. As I would prefer to pass this test the first try, I started reading Death & Dying, Life & Living on the plane to and from Nashville (finally a vacation!); it's a good overview of the palliative and hospice world and appears to be a wealth of information so far. Wish me luck!

Ride to Remember

Support a good cause! Dr. Greg Gramelspacher is cycling cross-country starting September 14 in Santa Barbara and ending up in Charleston, SC 40 days later. He is trying to raise money for the Wishard Health Palliative Care team with a goal of $300,000 to remember the over 3,000 patients he and his team have cared for; this coincides with the 10th anniversary of the palliative care program. For more info regarding this endeavor, look at his colleague's write up at Pallimed. You can also follow Greg's progress and make a donation at his Ride to Remember blog. Best of luck Greg!

Thursday, September 10, 2009

Bucket List Races a Car

"Jim" is still working on his Bucket List. In July he fulfilled his dream of riding in a NASCAR race car. OK, his original dream was to drive a race car but this was a close second. Thanks to money raised by his Rotary Club and the professionals at Richard Petty Driving Experience, Jim was able to go on his ride. Richard Petty Driving Experience offers many racing opportunities but they also offer ride alongs. Jim has definitely declined since we traveled to Springfield. He is much weaker and my biggest concern was how on earth he would get in and out of a stock car.

Luckily, the Richard Petty staff stepped in, lifting him in and out, making sure he was settled safely. In the Ride-Along, Jim rode shotgun as a professional took him around the track 3 times, getting up to 160 mph. Jim described this as one of the great thrills of his life.

Unfortunately, I was not able to go, as I had a patient in crisis that day. Jim had a DVD made though and when you watch it, it feels like you're right there in the car with him! Jim is still working on his List. Currently we're trying to find a DVD that will help him improve his bridge game. It may be one of the tamer items on the list but I'm sure Jim will be glad to cross it off and move on to the next item.


In a random sequence of events, I am going to help lead a GriefShare group at church. GriefShare is a 13-week program that utilizes video seminars, as well as workbook study and discussion. I've heard good things about the program so it'll be interesting to see how people respond. Last night I went to a leader's meeting and got to see the church's vision for all of the support ministry programs. I'm excited to serve in this ministry, as well as gain some support group experience. I know there are hurting people within the church and it would be an honor to walk along side them.

Sunday, September 06, 2009

Danny's Ride

Drew Wessels was featured in my recent college alumni magazine. He recently biked across the country to raise money for The Leukemia and Lymphoma Society, an organization that's been close to my heart since I hiked the Grand Canyon with them in 2006. There was something so empowering about training for that hike and fundraising. Little did I know that my grandmother would be diagnosed with multiple myeloma a year later. The fundraising we did led to the development of one of the chemo drugs Grandma took- it boggled my mind once I figured that out! Unfortunately Grandma's cancer was detected too late and she died a month and a half later. Cancer affects all of us.

Drew's biking partner was Danny Leonard, a 69 year old two-time cancer survivor. He shares his story in the video below. Their trek ended mid-June but Drew's blog is still worth reading. They met many people impacted by Danny's story along the way and it appears they learned a lot about themselves as well. In the process, they were able to raise awareness and money to support The Leukemia and Lymphoma Society. It's no longer possible to donate directly to Danny's Ride but perhaps consider training for an event of your own. I would highly recommend any of LLS's fundraising programs, from Hike for Discovery to Team in Training.

Combat Bags

Our local magazine The Glancer featured a gift for cancer patients developed by Suzanne Dwyer. Unfortunately Dwyer does not appear to have a web site at this time so you will have to do your best with your imaginations. Dwyer's sister was diagnosed with breast cancer a year ago. She wanted to find a way to ease the stress of chemo and also encourage her sister. Suzanne looked high and low for a special gift but couldn't find anything that was quite right. So she came up with the Combat Bag, "a bag full of hope and chemo-kicking essentials that patients can carry to and from treatment." The stylish bag (20"w x 12"h x 8.5" d) has handles and a shoulder strap. It comes with a plush blanket, BPA-free water bottle, bandana, 100% natural/organic moisturizer for lips, hands, and feet, and a Combat Bag dog tag. Plus, there's room for personal items, making this bag a good bet for hospital stays or weekend getaways. The bag costs $95, plus shipping and handling. A portion of the proceeds are donated to cancer research. For more information, call 630-615-8585 or email

End-of-life Care Conversations

The Chicago Tribune highlights a discussion on DNRs in today's paper. The article looks at Gloria Hayes, a 77 year old with pancreatic cancer, her family, and palliative care team at Advocate Lutheran General Hospital. On a personal note, I met Dr. Preodor when he was the medical director for the hospice where I did my fieldwork placement; he stepped down from his position when I was a few months into it but I remember being impressed with his dedication to our patients and to further public understanding regarding end-of-life issues. Overall I thought the article was well done. The patient is very clear on what she wants. "Death is a certainty," she had said. "There's no sense in me fearing it. There's nothing I can do about it." Her family is more conflicted, hopefully illustrating the importance of these conversations ahead of time. The medical professionals clearly lay out the facts and their recommendations but also talk about abiding by whatever the patient wants.

Preodor then described cardio-pulmonary resuscitation in a way that sounded nothing like TV. A violent pounding on a fragile chest. A high probability of ending up on a ventilator in an intensive-care unit. No effect whatsoever on advanced pancreatic cancer. "It is not recommended for people with cancer," Preodor said. "My recommendation -- but it is something for you to think about."

When I first read that passage, I cringed knowing how the words might be interpreted. Unfortunately people often take TV-portrayals to be reality; the way the reporter writes, it might appear that Preodor is trying to scare the patient into signing the DNR. Of course, he is doing no such thing. The public is generally not aware of the side effects of CPR on a healthy person so why would they consider the risks to someone whose health is already compromised? I had to go through CPR certification for work a year or so ago and was surprised to learn that people often throw up while receiving CPR. I already knew that it's not uncommon for a rib to crack or break during the process. Yes, lives can be saved through CPR but it is not an easy, magical process. (At least from this social worker's perspective.) I think it is important for patients to be aware of how their condition affects the effectiveness of CPR.

The article then highlights Someone to Trust, which trains facilitators to lead advanced care planning conversations in the Chicago area. Their long-term goal is to significantly increase the number of Chicago-area residents participating in advance care planning prior to a healthcare crisis. Someone to Trust notes: "While advanced care planning (ACP) can include advance directive documents, it is also an ongoing, living conversation and decision-making process between patients, families, designated agents and medical practitioners where end-of-life medical wishes are discussed. If initiated while the individual is capable, these conversations provide needed information and give the individual time necessary to understand and interpret the information in the context of her or his own values and goals." It's important to have organizations out there that can assist people in formulating their wishes. These conversations must continue regardless of their coverage under the proposed health care plan.

Finally, yes, that is our very own healthcare blogger, Dr. David Fisher who is quoted in the article.

Friday, September 04, 2009

"Where's your husband?"

This afternoon I was visiting with a patient that can be difficult to handle at times. She's extremely labile, her emotions go all over the map in the span of 30 seconds, so it is helpful to know how to distract her and keep her in a happier place. She's also pretty confused. Today she told me that her son and daughter were deceased (they aren't) and then 5 minutes later she told me her son sent her flowers. Apparently from the grave. Then 30 minutes later she heard the caregiver cooking dinner in the kitchen and told me her son was making a racket while he organized the cabinets. I really get a kick out of visiting with her. We were partially chatting and partially watching Jeopardy when she turned to me and asked what my husband was doing. I told her that I wasn't married. Then she said, "I could have sworn you were married." I watched her ponder this information and wondered where she was going to go with this. She looked at me again, in such disbelief, and said, "But you're so pretty!"

Wednesday, September 02, 2009

Palliative Care Grounds 1.8

Welcome to the latest edition of Palliative Care Grand Rounds! I'm honored to be your hostess this month and excited to share some of my favorite death and loss blogs. I've taken some liberty in sharing blogs that aren't specifically palliative or hospice-related but still applicable to the field. Remember to follow the blogs you like and comment often- I promise it never gets old. While I was gathering my thoughts for this, I realized almost everything could be compiled as if I were doing a psychosocial assessment, incomplete though it may be. This means I am either clever or need a vacation, most likely a combination of both. In any case, enjoy!

PCGR now has subscription options; you can follow by
email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.


Medical History
The latest article in the New York Times series "Months to Live" has generated some interesting feedback in the blogging arena. Check out Christian Sinclair's insightful response to "Breaking the Bad News" over at Pallimed. Gail Austen, president of the American Academy of Hospice and Palliative Medicine, sent this letter to the editor noting an important distinction about palliative care.

Kristy Richardson has kidney cancer. What makes her unusual is that she apparently never had surgery or treatment. Here she is, 22 months after her diagnosis. She's not had an easy go of things, what with being denied Medicaid and Disability- from what I can tell, this is why she hasn't had surgery,etc. Cancer rant is also worth looking at.

Hospice Physician is a wonderful addition to the blogging world. It was tough deciding which posts to feature. Read "Are They Really Dying?" and "Congratulations You've Graduated Hospice."

Are you tired of asking patients to rate pain on a 0 to 10 scale? How to Cope with Pain has some thoughts on that issue.

Dr. Muriel Gillick shares her thoughts after reading a New York Times Magazine article from 1950, "Recharting Life for an Aging America." She notes that there's been a change in perspective but questions: "Is the result really that Americans today fail to accept that death is inevitable? Or do patients appear to believe that death is optional because physicians seldom discuss life’s final stage and continue to offer treatments, even if they are of little or no benefit? For all the lip service paid to informed consent and joint physician-patient decision making, older patients seldom understand their likely trajectory with and without a particular treatment."

Advance Directives
The Eldercare ABC Blog has a wealth of information regarding, you guessed it, elder care. Of note is the article on what will happen if one does not have a DNR. The author offers practical suggestions on how to let people know what your wishes are, especially once you are unable to express them yourself.

SocialWorkEmergency shares this story about a woman whose father had a poor prognosis. She was not ready to withdraw care and it seemed her father had not left Advance Directives or discussed his final wishes so the hospital had to respect her decision in the end- although some of the staff took the badgering approach.

And if you weren't already convinced that Advanced Directives are important, David Fisher, MD, MPH lays it out on the line with "The document that is more important than a living will." He writes: "
If you were to become very ill, unless someone has a copy of your living will, it may never be followed. It is much more powerful to have a living, breathing advocate (your Power of Attorney for Health Care) who understands your wishes and can help guide your doctor through the myriad of possible scenarios that can occur if and when you become ill." It's important to note that you do not need a lawyer or notary public for the form to be legal and Dr. Fisher kindly includes links so you can print off your own copies.

What if you don't think your loved one will follow your wishes? Cooking with Dee suggests that you take care of the paperwork well in advance. She shares how her sisters overrode her mother's wishes until her mom could finally and firmly tell everyone she did not want any more treatment. This has impacted how she and her husband view the eventual ends of their own lives. "
We will both do our own papers and sign DNR’s because we don’t trust each other to let the other go. I know that in my heart." The presumption is that with the paperwork in place, the spouse will indeed follow what it says- it takes the guesswork out of the process. I hope that will be true if and when they are in that position.

Wings of Madness focuses on the ins and outs of depression, offering information, news, and support. There's also a support forum for those struggling with depression. Of particular use is the article "What to Do (On and Off the Web) While You're Waiting for Your Antidepressant to Kick In." A fair amount of palliative care and hospice patients are put on antidepressants but there is sometimes a concern that there's not enough time for the medication to be effective or that it will take too long to work. This article addresses hands-on ways people can deal with depression before the medication kicks in, from music and book suggestions to ideas on self-care.

Kieran is a writer with terminal lung cancer. He opens up about his experience with therapy. I love that he says he doesn't really need to see a shrink but that he does need help in dealing with the things happening in his life. I'm of the belief that everyone could benefit from having a nonbiased listener in their life and I'm glad Kieran has found his. His mom recently died amidst some changes in his own health. He writes poignantly of his grief while laying in his hospital room.

The Naked Soul invites us to accompany him on his spiritual journey. Hardships Along Our Journey is relevant for ourselves and for the people we serve.

Family History and Dynamics
Daughter of Cancer, whose mom had glioblastoma, shared what to say and what not to say before her mom died. This particular blogger notes she is a private person and will not often share her feelings with family and friends- hence, her blog. This is what makes her openness regarding her grief so compelling. Here she talks about how she tried to disengage before her mom died and wondering what the rest of her family is feeling.

Hospice Doctor shares the story of a 20 year old patient with a rather dysfunctional family. "A couple of weeks ago, another relative who helped care for Helen told me that Helen was an angel who'd been sent to earth to fix her mom. Unable to do that, Helen had to leave...We all search for meaning as we confront the unspeakable. It occurred to me that I had no better explanation for this tragedy."

Should a well partner separate from the sick partner? An advice columnist recently gave the OK, in a post featured on In Sickness and In Health. That kind of advice gives me the willies!

The New Old Age Blog looks at the way divorce can complicate caregiving situations. Blended families can mean more elderly parents to care for but also more complicated family dynamics.

Culture and Ethnicity
The Masked AMHP works in a Community Mental Health Team in England. "Lost in Translation" discusses the need for an interpreter for a Portuguese girl who could not hear. I've heard of sticky interpretation situations but this one might take the cake!

Caregiving Needs
Nursing homes get a bad rap, which is not always justified. Unfortunately, if you've worked in the healthcare industry, you've likely experienced a bad nursing home at some point. Jonathan Rosenfeld's Nursing Home Abuse Blog holds nursing homes accountable for their care, with the goal of improving quality of care for their residents. He recommends America's Best Nursing Homes if you're trying to find a long-term care facility for your loved one.

I'm grateful that discharge planning is a very limited part of my job. Setting up caregiving or finding a bed at a nursing home that meets someone's specifications is never easy in my experience. My hat is off to the medical social worker at The Unburdening who deals with demanding families and does her best to meet their "needs" every time.

I would be remiss if I didn't take a moment to focus on family caregivers. They are the unsung heroes of end of life care. I appreciate the honesty and vulnerability found on Dying to Help. "My Mother Told Us There'd Be Days Like This" and "Hurry Up and Die" highlight the difficulty in caring for a loved one. We are ready for the burden of caregiving to end but we are never fully ready to let go.

GeriPal has a great take on family caregivers, referring to them as the Silent Long Term Care System. I should note that GeriPal is another site that has so many relevant posts, it was hard to know how to categorize them!

Resources In Use or Needed
Often patients needing palliative or hospice care are no longer able to work. They may be eligible for Social Security Disability but it's not always an easy process to apply. The Social Security Disability Blog answers just about every question one could ever have about the system.

Stop by Dream Advocate, a social work grad student who is starting her second year fieldwork placement at the Health Care for Homeless Veterans program. This might not seem like it would have obvious ties but over the years I have worked with veterans who were either homeless at some point or recently placed at a facility before coming on board with hospice. The VA does offer good assistance if one has time to navigate the paperwork and the system. I'll be interested to hear what situations Dream Advocate finds herself in and any legislation created to help our veterans. Maybe she'll give us tips on dealing with the VA! Also check out her thoughts on the book Anti-Cancer: A New Way of Life- she never posted a full review but she does share some interesting thoughts.

Coping Skills & Self-Care
I adore Carl Witten's blog "A Pastor's Cancer Diary." It was seriously difficult to figure out which posts to share and how to categorize him. "Laughter Yoga" is certainly an interesting concept. In "Resilience" he compares the effects of cancer treatment with the PTSD experienced by soldiers in combat, noting that "Cancer need not be a life-shattering experience, no more than a tour of duty in a war zone needs to be. Both experiences are difficult, even life-changing. Yet, both are survivable, psychologically speaking." "The Breadth of God" examines how a serious illness can deepen faith with a wonderful passage from Rabbi David Wolpe.

Celebrate Simple Pleasures at Being Chronically Ill is a Pill. She shares a good reminder: "When I am feeling particularly frustrated by my illnesses and like nothing works right in my entire body (pity-party anyone?) I sit myself down and focus on all the things about me that DO work."

Funeral Arrangements
Everyone Needs Therapy shares a friend's experience at his mother's funeral and offers insights on the expression of emotions at funerals. There is a difference between public and private grief/mourning; there is not one "right" way to do it. We often want to present a brave face during times of sorrow but we should also allow our friends and family to share those emotions with us. ENT is a great mental health resource and covers a variety of topics.

LCSW Mom works in hospice and as a crisis clinician in a trauma center. She shares a reflection read at her grandmother's funeral.

Ever consider holding your funeral before you died? That's just what Judi (Life as a Hospice Patient) did recently. She has a full recap here on the events. It sounds like it was a lovely celebration that captured Judi's spirit and advocated her cause.

Bereavement history
Quilting is an interesting form of memory making. It can be hard to let go of a loved one's favorite t-shirts, ties, or quirky dress. We want to hold on to the memories but we don't always have the space. Converting the clothes into a quilt of blanket can be a therapeutic exercise, creating a lovely keepsake along the way. This blogger created a quilt using her stepfather's favorite t-shirts and sweatshirts; it's touching to read about the associations with each item and the author's description of her and her mom's grief. This woman writes about wanting to make a quilt using her baby daughter's clothes and then realizing she's not ready yet.

Sarah talks about the pain of going through her mother's clothes and finding the nightgown her mom wore when she died. She plans on making a quilt for herself and her two sisters, thanks to the kindness of a woman named Sue. Read here and here to see Sarah's mental preparation/state for going through the clothes. Sarah faces infertility along with mourning her mother's death; she is very honest and candid about all that she faces, making her blog a must-read for me.

Malcolm Payne of St. Christopher's Hospice in London writes Social Care/Palliative Care, a social work at the end of life blog. I would be interested to hear what people think of Payne's thoughts on the need, or possible lack thereof, for bereavement assessments. He writes: "We in the people-working professions have defined something perfectly natural as a problem because we have sometimes come across people who have problems with it. There’s a bigger risk that we’re propagating unnecessary involvement in services than the risk people run by feeling sad when someone important dies."

Other odds and ends:
Linda Mock, a hospice RN, has set up a R.E.S.T. (Receive Enough Support Today) to acknowledge the professional stress of working in hospice. Symbolic Loss resonated particularly with me. It often seems I do not have a chance to process the loss of one patient before being presented with 3 new admits.

Social Work Blogs has links to social work blogs of all kinds- a very handy directory.

BlogCatalog has a Death and Dying category. Not all the links belong there (I saw one blog on weddings!?!?) but I found a bunch of great new resources, too.

Next month's Rounds will be hosted by GeriPal on Wednesday October 7. Be sure to check it out!