Sunday, May 31, 2009

A Time to Mourn

Just came across this blog post on the Christianity Today website about mourning. The author writes beautifully about our tendency to overlook another person's pain and our preference to notice the pain but gloss over it with encouragement. The truth is, when we are in pain (emotional, physical, or other), having someone who will listen to us generally matters more than anything they might have to say. A listening ear can be a validation of what I'm feeling because we all know there are times when there are no words. Having a companion through the journey can be enough reassurance that we will make it through to the other side.

From "A Time to Mourn":
Too often in my life, I’ve expressed an overabundance of “Christian optimism”: I encourage others in hopes of counteracting their pain. While it’s great to exhort—kind words usually do help—we must consider: Is encouragement what my friend needs most right now? ... I’ve noticed that some friends who aren’t believers have a better grasp of mourning than I do. Perhaps they’re more willing to cry with others because they don’t have the option of asking God for comfort. I’m grateful I’ve got a loving Father to turn to in tough times, but sometimes, I exercise that option a bit too vigorously. I ask God to shelter me from all physical and emotional pain—essentially, to keep me perpetually happy. Additionally, I’ve suppressed and ignored my pain, telling myself, This, too, shall pass. God will eventually set everything right.
And God will. But God does allow suffering in this life because humans need to experience it. Pain reminds us there’s something wrong with the world: It’s broken due to sin. Pain calls us to action: We’re reminded that the only true hope is found in relationship with God.

Wednesday, May 27, 2009

Independence at Home Act

Our hospice medical director Dr. Tom Cornwell happens to be a home care physician and let us know about an important piece of legislation that has been reintroduced in the House and the Senate. The Independence at Home Act is being heralded as "the most significant Medicare reform since 1965." House calls provide tremendous value to homebound patients and their caregivers, improving their quality of life while also reducing health care costs by decreasing hospitalizations and nursing home placements. Certainly Dr. Cornwell's practice is booming- I'm surprised he has time for our weekly ICC discussions, let alone time for his family. In addition to Dr. C.'s many involvements, he has also advocated for more house call programs and this legislation will certainly help.

What is the Independence at Home Act, you ask? Here's the breakdown:
-A chronic care coordination benefit for the 20% highest cost Medicare beneficiaries with multiple chronic illnesses that account for 2/3s of Medicare spending.
-An interdisciplinary IAH house call program would be required to:
1) Save Medicare a minimum of 5% per year.
2) Have outcomes appropriate for the beneficiary's condition.
3) Meet patient and caregiver satisfaction goals.
-Savings beyond the initial 5% would be split 80/20 between the IHA house call program and Medicare, thus stimulating the creation of house call programs and helping current house call programs expand and give even more advanced care.

Our patients that utilize HomeCare Physicians absolutely rave about the service they receive. They're getting quality medical care without the ordeal of getting to the MD's office. Priceless! And yet, when it comes to healthcare, everything is about the bottom line. (Even nonprofits- such a dirty secret, no?) If IHA is passed this Friday, it looks like everyone will benefit.

If you want to support the Independence at Home Act, please contact your Congress and Senate representatives by this Friday May 29 and ask them to co-sponsor the bill. Click here to locate your officials. Please pass the word along to anyone that might be interested in furthering this cause!

Tuesday, May 26, 2009

The Art of Being Helpful

Sometimes I think I do my best work when I feel the least helpful. Does anyone else know what I'm talking about? When I know that there's nothing that I can say to make everything better, when I'm literally at a loss for words and just praying that somehow my presence would be comforting or that God would give me the words, when I'm wondering if I'm even making a connection to another person...somehow these are the moments that I get incredible feedback. And I just have to take a step back and wonder if we were in the same room because I'm not sure how I helped them. The fact that they were in fact comforted by my visit is humbling and sometimes that's what keeps me going. I met with a 13 yo girl this afternoon whose grandmother is our patient and who has suffered many losses already. I had no idea how our visit would go, if she would talk to me at all, and if she did talk to me, if she would open up. Somehow time flew by and she asked her mom if I can keep coming back. I don't know what I did to help her open up but she did and I'm glad. Hopefully I can support her through the times ahead.

Wednesday, May 20, 2009

Poor Fairygodmother

It is with great sadness that I report the demise of Fairygodmother Foundation. FF is/was a wish-granting organization for terminally-ill adults, aka Make-a-Wish for grown-ups. The organization was based in Chicago and I had the honor of using them for a few wishes while I was doing my fieldwork placement with Horizon Hospice. One of the most memorable wishes involved an elderly Southside man "Theo" with Alzheimers. He loved jazz and really connected to the music in spite of his illness. Unfortunately his family had severely neglected and stole from him; he was back in his house with a court-appointed guardian but he had no stereo so he couldn't listen to anything. I would bring a CD player with me on my visits and he would come to life, sharing all kinds of stories from his past. FF bought him his own CD player, located CDs of his favorite jazz artists (some of whom he had known!), and put together a special party for him. It was incredible!

Once I was hired by my current employer, I tried to look for ways I could use FF again with my own patients but no one had any big dreams that needed an extra boost or else they were able to pay for everthing already. In August I attempted to use FF for my Bucket List patient but FF called me to let me know they were so backed up on wish applications that it would be quite some time before they could grant Jim's wish to go skydiving. So we just did it on our own. This brings us to the present. I have a patient that wants to go to AZ for one last hurrah. When I tried to bring up FF's website, it wouldn't come up under any of the search engines. The phone number has also been disconnected. It looks like this nonprofit is no more. I have no idea what happened but I'm sure the current economy didn't help. I'll be using The Dream Foundation for the AZ wish and hopefully they'll be as amazing as Fairygodmother was. If anyone knows what happened to FF, please let me know!

Tuesday, May 19, 2009

Memorial resource

I attended a patient's wake this afternoon. "W" was on hospice for a little under 2 months; he and his wife "F" absolutely stole our hearts. They celebrated their 65th wedding anniversary earlier this year. One of W's proudest moments has been meeting several US presidents and a big picture of him with George and Barbara Bush is featured prominently in the house. (Kind of makes me calling him "W" ironic!) I knew before I left for CO that W would probably die soon. I'm just glad that I was back at work in time to go to the wake. The family was glad that I and hospice RN Liz came and let us know how much we helped them. It's always nice to hear that from families. The family put together quite a tribute to W using a resource I've not seen before. Making Everlasting Memories is used for all types of occasions, including weddings, graduations, and funerals. There's a beautiful album, a biography, and special pictures. It was so interesting to learn even more about W's life and see how his family described him. Just a neat special touch! The Everlasting Memorial is pricey at $595 but a wonderful keepsake just the same. The online memorial component is a nice feature for families and friends who do not live near each other.

Monday, May 18, 2009

11 Tenets of Companioning

I've referred to these tenets in my own work for some time but I don't think I've ever posted it for your benefit. May it be meaningful in your own life and work.

From Dr. Alan Wolfelt:

1. Companioning is about being present to another person's pain; it is not about taking away the pain.
2. Companioning is about going to the wilderness of the soul with another human being; it is not about thinking you are responsible for finding the way out.
3. Companioning is about honoring the spirit; it is not about focusing on the intellect.
4. Companioning about listening with the heart; it is not about analyzing with the head.
5. Companioning is about bearing witness to the struggle of others; it is not about judging or directing these struggles.
6. Companioning is about walking alongside; it is not about leading or being led.
7. Companioning means discovering the gifts of sacred silence; it does not mean filling up every moment with words.
8. Companioning is about being still; it is not about frantic movement forward.
9. Companioning is about respecting disorder and confusion; it is not about imposing order and logic.
10. Companioning is about learning from others; it is not about teaching them.
11. Companioning is about curiosity; it is not about expertise.

Comprehensive Bereavement Skills Training

Last week I headed to Fort Collins, CO for a conference at the Center for Loss and Life Transitions. Dr. Alan Wolfelt, a leading grief expert, runs Death and Grief Education seminars throughout the year. Attending the Comprehensive Bereavement Skills Training is possibly the best thing I've ever done for myself. The 4-day seminar was powerful and informative, both personally and professionally. Alan's book "Companioning the Bereaved" (excerpt) is the essence of the conference, if you're interested in learning more about his philosophy of companioning. The seminars are limited to 18 people (ours had just 15 and I can't imagine a better group of people!). The Center is located in the mountain foothills, truly an idyllic setting.There's nothing like eating breakfast with a lake before you and mountains behind you. Alan and his staff strove to take care of us, which was a nice change of pace. I even got a massage one night! I'll be sharing what I learned last week in future posts; for now, I'm still processing what I learned.

I suppose it is time to share some of my plans. I've been contemplating working in the bereavement world for some time now. I already work with bereaved children and teens and am counseling a patient's widow. I've realized that those are the times my soul comes alive. It's not that I don't enjoy what I do as a hospice social worker because I do. I love counseling people, learning about their lives, and preparing them (as best as anyone can) for what lies ahead. However, I hate the "social work" part of my job- you know, setting up respite care, referring to community resources, helping families with long-term care plans. These are all good things and I know families benefit from this assistance but I've realized that it is not my strong-suit. To that end I've decided to pursue certification in Thanatology (Death, Dying, and Bereavement) and then pursue a position that will allow me to work with the bereaved. This process will take some time. Ideally I would work part-time as a hospice social worker and part-time in bereavement. And who knows? By the time I finish my certification maybe that will be a possibility. I'm just taking this one step at a time as God leads me. One next step to take will be going to another conference at the Center for Loss. Dr. Wolfelt offers his own Death and Grief Studies certification after you attend 5 courses. I gained so much from this past week that I can't imagine not attending more courses! I'll be sure to keep you all posted...

Friday, May 08, 2009

The Year of Magical Thinking review

Joan Didion's The Year of Magical Thinking is a powerful account of the author's grief after her husband John's sudden death from a heart attack. While this happened, their daughter Quintana was on life support. Once Quintana recovered, Joan was faced with the task of when to tell Quintana that her father had died. Didion gives us an unflinching look at grief and the things we tell ourselves during times of loss, the so-called "magical thinking." Anyone who has lost a loved one will relate to the things Didion told herself at times, such as not giving away John's shoes because he would need something to wear if he was to come back. You'll also relate to the constant examination of the final moments, days, months of John's life.

"He said these things in the taxi between Beth Israel North and our apartment either 3 hours before he died or twenty-seven hours before he did, I try to remember which and cannot."

I so appreciated Didion's honest protrayal of what loss looks like. The concern that Didion could have done something, anything, to prevent John's death. And the way Didion approaches healing, grief, "moving on." The fact that she mourned her husband while her daughter's life also hung in the balance is truly remarkable. Someone with a recent loss might need to wait before picking this up, depending on where they're at in their own process. I've already recommended this book to a couple of friends and clients working through their grief. I'll leave you with this excerpt:

"There was a divide.
The abrupt finality of this divide was something about which I thought a great deal during the late spring and summer after I came home from UCLA. A close friend, Carolyn Lelyveld, died in May, at Memorial Sloan-Kettering. Tony Dunne's wife, Rosemary Breslin, died in June, at Columbia-Presbyterian. In each of those cases the phrase "after a long illness" would have seemed to apply, trailing its misleading suggestion of release, relief, resolution. In each of those long illnesses the possibility of death had been in the picture, in Carolyn's case for some months, in Rosemary's since 1989, when she was 32. Yet having seen the picture in no way deflected, when it came, the swift empty loss of the actual event. It was still black and white. Each of them had been in the last instant alive, and then dead. I realized that I had never believed in the words I had learned as a child in order to be confirmed as an Episcopalian: I believe in the Holy Ghost, the Holy Catholic Church, the Communion of the Saints, the forgiveness of sins, the resurrection of the body, and the life everlasting, amen.
I did not believe in the resurrection of the body...Nor had my Catholic husband.
I imagined this way of thinking to be clarifying, but in point of fact it was so muddled as to contradict even itself.
I did not believe in the resurrection of the body but I still believed that given the right circumstances he would come back."

Thursday, May 07, 2009


Christianity Today online featured these two worthwhile articles:
An excerpt of a famous Puritan funeral sermon titled "A Believer's Last Day, His Best Day."
A mother reflects on her son's suicide and the impact on her faith.
"Kheriaty closed his message with a meditation on the Prince of Peace.
'On the cross and in his agony, our Lord suffered not just our physical afflictions, but our mental anguish as well. Out of the depths we cry to him, and he reaches down into our depths to raise us up with him. God knows the depth of our suffering. He knows our fragile heart. And Christ's own heart, a heart of flesh, a heart both human and divine, is merciful beyond measure. It is in this mercy that we place our hope. It is into these hands stretched out on the cross in a gesture of love that we entrust Gabriel.'
Amen. When I think of all that Gabriel suffered in this life, I do not understand. I find it difficult to trust God or engage him with the intimacy I once enjoyed. And yet every day, I inhale moments of grace. I am immeasurably grateful for the privilege of being Gabriel's mother. By faith, I now see my serendipitous meeting with Aaron Kheriaty not as a cosmic joke, but as evidence of God's immanence."

Saturday, May 02, 2009

Bucket List goes to Springfield

This has been a crazy week. I worked 10-hour days so I could have Tuesday off without taking a PTO day. And I needed Tuesday off so "Jim" could cross off another item from his Bucket List. Even though skydiving counted as a work day, apparently Springfield was too far away to count as a work day but there was no way I was going to miss out on this experience! Jim wanted to go to the Abraham Lincoln Presidential Museum and since the weather is nicer, we decided it was time to go. RN Beth and her husband Bill were able to join us, along with Jim's wife Jan. We left at 6:30 am- yep, I'm a trooper! The day took a toll on Jim but he was so glad to be there! The museum is an incredible experience. I mean, they have holograms! How cool is that? You really must go if you ever get a chance.

Jim, me, and Beth (hiding behind Mary) pose with the Lincoln family

We explored the museum from top to bottom and then headed back home around 2 pm. We topped off the day with dinner in Glen Ellyn. Jim's hospice volunteer Gary and his wife Margaret were able to join us for dinner. It's so neat to see how Jim and Jan have affected our lives and how we have come to affect their lives. We could all talk about boundaries here but I admit it- I don't have good boundaries when it comes to this couple. They completely snuck their way into my heart. I do fear the day that Jim really starts to decline. We're used to this slow progression. The flipside is that we are so clearly making a difference in this man's life. I now have weekly prebereavement sessions with Jan and this has really helped her to take better care of herself and start preparing for some of the changes that lie ahead.

Jim said that our trip to Springfield exceeded his expectations. He was a little disappointed that it was over with since he'd been looking forward to the museum for so long. He still has quite a few Bucket List items to go. Somehow I think he'll be looking forward to the next BL item soon!

Friday, May 01, 2009

Paul's Proposal

Since I last wrote about Paul, he has had a few ups and downs but more importantly, he has celebrated his 97th birthday. He's feeling pretty confident he'll make it to #100. Of course, if he does, I probably won't be there to celebrate as he would be far outside the bounds of hospice-appropriateness. But until that day, I'll keep on visiting him every week. Last week Paul had had quite a change in condition and was back to his bed for a couple of days, not eating much, and a bit more confused. Yesterday he greeted me at the door with his cane in tow. He definitely keeps us guessing! Paul wanted to reminisce about his sweet deceased wife "Athena." She has been gone for almost 3 years, something that Paul marvels over as if her death happened yesterday. And after 72 years of marriage, it's no wonder his eyes still get misty. However, Paul told me a couple of times he wasn't going to cry about it today. I probed his insistence on keeping the tears at bay but it turned out that he felt he had cried enough and he didn't feel like feeling sad this particular day. He shared some happy memories about their marriage and how they were able to communicate about anything and everything. All of a sudden he peered at me and said he couldn't remember if I said I was married. I told him I wasn't. He then smiled at me and offered this gem. "No one could compare to my wife but you come real close!" With a twinkle in his eye, he then told me that if he makes it to 100, we should get married. Such a sweetheart! As much as I joke about wanting a sugar daddy, I don't have an ounce of gold digger inside. I think if Paul does indeed make it another 3 years and I'm still single, I'll have to pass on his offer. Still, it's nice to know that men in their 90s appreciate me!