Terri Schiavo

May Terri Schiavo rest in peace.

Okay, so I was hoping not to get into this discussion. (If you hadn't already noticed my silence on this very hot topic). And I am not going to get into this messy, high-profile case now either. Instead, in honor of Ms. Terri Schiavo, I'm going to offer a lesson in this story - one of the many morals that can be taken from this tragedy.

I want each of you to write and sign an advanced directive.

First of all, you may ask, what is an advanced directive? An advanced directive is a legal, written document which states precisely what you would want should anything happen that would prevent you from communicating with others what your wishes would be. This document should also include a "Durable Power of Attorney" stating who you want to speak for you should you be unable to speak for yourself. These documents would prevent your family from splitting apart in disagreement with one another as happened in the Terri Schiavo case.

You wouldn't want your loved ones to split off from one another when you are ill or when you die, would you? I don't think Terri wanted that either.

Five Wishes is a legal document that makes it easy to list what you'll want by asking specific questions for you to answer in a step-by-step format. It does cost $5, though.

Many states also have a pre-written advanced directive form that you can complete, which are often free of charge. The US Living Will Registry has links to each of the states' forms.

The American Bar Association's website also includes some of the same questions from the Five Wishes document to help you decide who you'd want to make health care decisions in your behalf. It's not always the first person that comes to mind. You want someone who knows what you'd want and would stick to it despite their own feelings. You want someone who would be strong enough to advocate on your behalf despite others' objections. And you might prefer someone who lives nearby for convenience sake.

And don't think just because you're young, you don't need to do this yet. Think about Terri Schiavo. The younger the person, the harder it is to make these difficult decisions on their behalf.

Please keep in mind that states laws vary. And I am not a lawyer, so I cannot speak to the accuracy of the law on the websites I refer to. These sites are merely suggested as a starting point to preventing turmoil in your loved ones' lives should you ever become incapacitated.

So, in honor of Terri and out of love for your family, take the time to write your advanced directive now.


Other resources:

-Resource List from the Commission on Law and Aging
-Durable Power of Attorney and Advanced Directive Forms by state

Pain Medication Myths

There are many common myths about pain medications, particularly opioids (aka narcotics) such as morphine. Many sites out there are already working to dispel these myths. But I would like to focus on just three of these myths. Please see the references at the end of this post for more myths.

1. If I take pain medications, I'll become addicted.

With no prior history of drug addiction, people have an extremely minimal chance of developing an addiction. I have heard figures lower than 1%. There is a phrase thrown around a lot in hospice and palliative care when people express concerns about addiction: "Pain is the antidote to addiction." People who have problems with addiction generally are using the medication to treat psychological problems, not to treat actual physiological pain. In addiction, drugs are a form of escape. Taking the medication to legitimately treat pain will not make someone an addict.

2. I should only take pain medications when the pain is absolutely intolerable.

Pain medications are much more effective when pain is minimal. The stronger the pain, the more difficult it is to alleviate. Therefore, treating the pain before it gets severe is essential for good pain control. Most women have realized if they wait to take ibuprofen until after their menstrual cramps are in full-swing, they require much higher doses of medication than if they take one or two ibuprofen as soon as they feel the first hint of menstrual cramps. And then if the ibuprofen is continued on a schedule, cramps are often avoided. Every type of pain works that same way. Many people take pain medications around-the-clock on a scheduled program to prevent their pain from getting too high. And then take extra medicine when the around-the-clock medication doesn't work (referred to as "breakthrough pain).

3. If I take pain medication, I will die sooner.

First of all, whoever passes this myth on must be simply inhumane. To me, it sounds like telling someone who's dying that it's not okay to treat their pain. This myth has been said to be based in a fear that the person will overdose or stop breathing from the pain medication. Pain medications are always initiated at the smallest dose and then increased in order to find the appropriate dose for the patient and their level of pain. Morphine, a common drug used in palliative care settings, is also used to treat difficulty breathing. So contrary to the fear that the morphine will make someone stop breathing, it actually instead makes breathing more comfortable.

I recently had a patient, Mr. Tenaci, who was dying of rectal cancer. He was having severe rectal pain primarily due to frequent diarrhea. As soon as I would enter his room, he would send me away.

Mr. Tenaci: I'm sorry. I'm in too much pain. I can't talk right now.

Mia: Can I give you some pain medication?

Mr. Tenaci: No, I don't want any. I'm just going to lay down in bed. But please bring me a hot pad.

Each time I entered his room, he responded the same, quickly turning me away. He was mildly irritable at times, which didn't surprise me since he seemed to be in so much pain. (Another reason to treat pain - so you can avoid that irritability that may make it difficult to resolve relationships with loved ones). He apologized repeatedly for not smiling, siting again his pain as the reason for his mood. Finally, I got him to admit why he wouldn't take the pain medicine.

Mr. Tenaci: Someone told me I would die more quickly if I took pain medicine.

Mia: You must have been very afraid to take any pain medicine then. But let me assure you, that's not true. Though even if it were, wouldn't you want to enjoy what time you have, rather than spend all of your time in pain?

Mr. Tenaci grew quiet and a thoughtful look crossed his face. He still didn't say anything.

Mia: Well, I'll let you think about that. But if you change your mind, let me know.

Fifteen minutes later, Mr. Tenaci's call light was on. He was ready for pain medicine. I explained that there were two medications he could and should take - a long-acting medication that wouldn't start immediately but would last a long time and a short-acting medication that would work immediately but wouldn't last very long. I tried to convince him to take one of each, but he quickly brushed that idea aside with a wave of his hand. So I decided on the long-acting medication. As it was rather late at night, Mr. Tenaci fell asleep shortly thereafter.

A few hours later, when I checked in on Mr. Tenaci again, he sat smiling in bed.

Mia: How are you doing?

Mr. Tenaci: Great. I have no pain.

His smile was bright and filled his entire face.

Mr. Tenaci, knowing it was the end of my shift: So, will I see you again tonight?

He sounded hopeful. And for the first time all shift, he let me stay in his room while he shared with me about his life.

When people say "there is nothing that can be done" when curative measures to treat someone's illness have run out, they are so wrong. There is always something we can do and something we can hope for. We can hope for comfort and happiness and good quality of life for whatever time we have left.


Dispelling more of the myths about pain medications:
-Myths About Controlling Pain by the Mayday Fund
-Common Myths About Pain by the Hospice Foundation of America
-Pain Control on Hospice Net

The Long Road

The Long Road by Eddie Vedder and Nusrat Fateh Ali Khan
from the soundtrack "Dead Man Walking"

It's not just the lyrics to this song (which follow and are so clearly relevant) that I adore. Nusrat Fateh Ali Khan uses his voice as an instrument, creating various sounds from gutteral moans to high-pitched cries that, at times, are reminiscent of grieving. As I listen to the song, mimicking his sounds, I feel a release much more pleasant than the throat clenching, headache-inducing, eye-stinging of tears. Also singing out like that to another human's voice is much more comforting than the loneliness of crying tears of sorrow alone.

Here are the lyrics. If I was properly equipped, I would provide a downloadable copy of the song. But check it out if you can.

And I wished for so long, cannot stay...
All the precious moments, cannot stay...
It's not like wings have fallen, cannot stay...
But I feel something's missing, cannot say...

We all walk the long road. Cannot stay...
There's no need to say goodbye...
All the friends and family
All the memories going round, round, round, round
I have wished for so long
How I wish for you today

We all walk the long road. Cannot stay...
There's no need to say goodbye...
All the friends and family
All the memories going round, round, round, round
I have wished for so long
How I wish for you today
How I've wished for so long
How I wish for you today

We all walk the long road (3x)

Children and Death

When I was in the fourth grade, one of my good friends' moms committed suicide. This came as a big shock to my small bedroom community. I remember my mom sitting me down and explaining to me what had happened. I got a very vivid image in my mind of my friend's mom hanging by her neck from a rope in her garage. My feelings about the image were less clear. The story seemed surreal and beyond my scope of understanding. I felt bad for my friend, but my sympathy quickly wore thin. Was this due to my naive age or due to a general impatience with grief in our society that I had already learned by the tender age of ten?

Even at nine, when my maternal grandmother died, my understanding of grief was limited, I most clearly recall the fear of seeing my mother sob uncontrollably.

Children's understanding of death changes with each developmental stage. Some suggest that children must go through the grief of their earlier losses at each stage as their understanding of death and loss grows. I believe it.

My paternal grandmother's recent death has brought up some old griefs - most acutely, the loss of my maternal grandmother when I was nine. It's also brought up lots of anticipatory grief. I have relied heavily on my mother for support during this most recent loss and wonder grief-stricken how I'd survive my mother's death without her there to support me through it. I know I have other avenues of support - you, my dear readers, have shown a beautiful example of that through the numerous touching comments and emails I've received almost every day. I hold onto those reassurances each time the anticipatory grief washes over me.

I think I am most impatient of all for these feelings of grief to end. I have decided to join a grief support group. I haven't found one yet. S pointed out that it may be both beneficially for me personally and also beneficial to my work with families whose loved ones are dying. I think that makes it easier for me to reach out for help. It's easier knowing my reaching out for help will improve my ability to help others.

Riding the Waves

I actually wrote this post before I visited my aunt yesterday. I'm rather glad I wrote *something* in advance as right now I am downright too depressed to say much of anything. But here is what I wrote two days ago:


So... I was feeling like I was coping remarkably well. Then out of habit, I went to pick up my mail. As I turn the key in my mailbox, it hit me fresh again.

My grandmother is dead.

She remembered every single holiday. I got a package from her for Valentine's Day, a package for every anniversary, a package for my birthday, a package for Christmas. She didn't miss a beat. She was incredibly thoughtful. And now, my mail box is grieving, too. Grieving with the weight of bills and advertisements. Empty of love. Instead it's full of hollow want - people wanting money, people wanting me to buy things. [I actually received a few condolance cards since I wrote this - thank you to the friends with my snail mail address who sent such lovely notes!!! You cheered up my mailbox - and me!]

I let myself cry as I opened my apartment door, thankful that the timing of the tears was more appropriate than during my meeting with my academic advisor and her fellow advisees.

After brushing Bobby's cat and getting her to play a bit (yes, that 21 year-old cat of hers is as full of spunk as my grandmother was), I decided to start going through some of the photos I'd brought back copies of. I'm planning on posting a few on here eventually. As I sorted through them, I paused to really look at one of the beautiful images of her face. Suddenly, in my heart, I felt a different sadness. I felt my grandmother apologize for leaving without letting me say goodbye first. I know on a rational level that if she knew how sad I'd feel about not seeing her one last time, she would be sorry. But the feeling was something more than that. I know she is out there, or here, or both. I wish I could hug her.

The last time I saw her, we had a very meaningful goodbye. I didn't expect that it would be the last time I'd see her. She made me wait out by the car while she ran inside her apartment. She wanted to give me something.

She'd recently sent me this adorable box with a pixie-like fairy figurine on top. I'd told her how much I'd enjoyed it (and still do - it is sitting out in my living room right now). And as we said goodbye, she handed me a gift bag. I opened it and inside was a beautiful angel. Generally, I'm not very interested in angel figurines or imagery. But this angel was different. Faceless, she has golden wire wings and holds a tasteful golden heart. Her plaster dress and plaster hair billow lightly in frozen wind. Tears came to my eyes as I gazed at the touching gift and as we said our goodbyes. "Thank you," I said as I looked sincerely appreciative into my grandmother's beautiful, loving face.

Thank you, Bobby. For everything.

The Fading Flower

I went to visit my great aunt today. I wrote briefly about this great aunt in a prior post on conversations with people who are dying.

I have known that she has not been doing well. In fact, she has been bedbound for months and in a nursing home for most of that time. Today, I went to visit her for the first time since my grandmother died. As I walked to her house from the train station, my bouquet of flowers in hand, the tears started to trickle out. I told myself to go ahead and cry and get it out during the nine or so block walk to her house so that it would be out of my system before I got there. Unfortunately, all that crying didn’t help. I walked in, saw that she had lost even more weight than the last time I’d seen her and that her feeding tube was out. The tears flooded my face despite my attempts at restraint.

“I’m so sorry. I’m just so sad,” I mumbled as I reached for a tissue.

My aunt is from my mother’s side of the family. My grandmother was on my father’s side. So my aunt did not and does not know of my grandmother’s recent death. I decided not to tell her. I didn’t want the visit to be about me.

Once I got the tears under control, we had a lovely visit, as we always do. We told each other stories from throughout our lives.

Later, while she napped, I talked to the 24-hour caregiver who now stays at her house with her. I found out that in the two weeks I’ve been away dealing with my grandmother’s death, my aunt has been enrolled in home hospice, which I am immensely grateful for. I found out the caregiver has never been with anyone who has died before. She seemed rather nervous, so I left her my home and cell phone numbers to reach me in case she has questions or needs help.

When my aunt awoke from her nap, we talked a little more. She told me that she has regrets, but that they don't bother her anymore. I inquired further about this, as I have been struggling with my own regrets recently – most notably regretting not seeing my grandmother again before she died. My Aunt Loretta told me that regrets are just part of the learning process. Knowing this now, she has been able to make peace with her past. She also said she most regrets working so hard to please others.

She assured me, “I am very content and satisfied with my life. It was full. I liked it. I did more than I expected I would."

She said there is a Japanese phrase she likes that goes something like this:

We rejoice when the sprout comes out of the ground.
We rejoice when the flower blooms.
And we rejoice when the flower fades.

Once again, I am feel I am being asked not to be sad. There is obviously a lesson that I am not getting here. I say this as the tears swell up again. But it just isn’t fair. I miss my grandmother and will miss my aunt, too. Why can’t I be sad for me? How often are goodbyes truly happy and a time to rejoice?

My First Death Since...

Last night, I was present for my first death since my grandmother died. Complicated by its unpredictable arrival, I sheltered my grieving soul, tucked it deep away, to maintain my professional objectivity in the situation.

[Perhaps part of what I didn’t emphasize enough in my post about professional boundaries is the need for the nurse to make objective assessments and clearly rational decisions when in the best interest of the health of their patients. A lack of boundaries may easily result in a lack of objectivity, which is essential to the role of nursing].

This patient had requested not to be resuscitated (DNR/DNI), but he was not a hospice patient. There is a process of letting go of curative measures with a large gray area in between. This gray area is often very uncomfortable for health care providers, most especially when the patient dies in circumstances such as these.

How much do we do to try to save him? How much would he want us to do? His disease is terminal. He has just died peacefully in his sleep. Would he want us to bring him back so that he can spend a few more days in the ICU and then possibly die less peacefully there? Maybe he does. Maybe he doesn’t.

The intern convinced the family to let her try some non-invasive ways of bringing him back to life, despite his DNR/DNI code status. They didn’t work; I watched as Mr. Indepi gasped his final breath. Frantically, the intern listened and felt for a pulse. When she couldn’t find one, she ran from the room in tears. I can sense, but don’t relate fully to her sense of failure with this particular patient.

This man’s suffering has ended. He died as quietly and as peacefully as any of the hospice or palliative care patients so often do. My regret, instead, comes from the fresh perspective as family. This man died alone and unexpectedly. His girlfriend had been phoned as he approached the last hour of his life. In the middle of the night, she was the only loved one we could get a hold of. Will there be other loved ones who feel bitterness from the lack of warning? “Why didn’t anyone call us and let us know that she was dying?” The words I spoke like a mantra the day of my grandmother’s death sting my ears.

My grief made me more solemn than usual as I repositioned Mr. Indepi flat in his bed and cleaned his room. I instructed the nurse to leave his hands out of the linens so the family could hold them if they came to say their goodbyes. I've always done this. But remembering my grandmother's hands unaccessible under the sheet at the funeral home made my instructions slightly more vigilant, lest she forget next time a patient dies. At the funeral home, I'd wondered - why did they cover her hands? Is something wrong with them? She'd been dead for several days before I'd been able to make the trip to Florida to see her. And her body had not been embalmed, so I honestly didn't know what to expect.

As I awake, hours after my shift has ended, stormy waves brew under the surface of my skin. My sleep was filled with disturbing dreams; my rest was agitated.

May Mr. Indepi and my grandmother rest more peacefully than I have in the past night. And may Mr. Indepi’s family find peace in their grief. Peace knowing the doctor did everything she could to keep him alive; peace in the fact that he died comfortably and without fear.

My Grandmother's Ashes...

are sitting in a box on my kitchen counter.

They arrived in my mailbox yesterday, thanks to my Uncle's efforts to get them to me. The box is so surreal; I haven't touched it yet. Sweetie put the box there when the mail arrived, not knowing what was inside. Surreal - that about sums it up. All those carbon molecules that were once my grandmother's body now amazingly fit into one very small package.

So Touching

You know those classmates whom I was so worried about facing again after crying in front of them (see second-to-last post)? When I opened up the mail today, I saw a card from an unknown return address. And who had signed it? Each of the classmates whom had seen me that day. I was so moved; I was brought to tears.

What to do when a Loved One Dies

I wish I'd had a list of resources like one of these when my grandmother died. If it had been my parents, maybe I would have thought to look on-line. But read up now, BEFORE someone dies. As from my experience, after they've died, you're not likely to be thinking about what resources are out there to help you through the tough decisions. For instance, a lot of the tasks were picked up at random. I know some people in my grandmother's address book were notified of her death and memorial service, but others were expected to have found out through the obituary. I certainly don't read the obituaries for my city, do you? We also had expected the nursing home to provide food as a reception afterwards, but they didn't. Little details, such as these, kind of slipped by unattended to. I hope by providing links to some to do lists, I can help others prevent these mistakes from happening.

-Brocklands Woodland Burial to do list
-Charles Dewhirst funeral home to do list
-Colorado Bar Association's to do list
-Lange Lawfirm list
-Money Central article
-Uncle Fed's checklist
-UPMC's pdf brochure

Perhaps someday, I'll go through and compile these lists into one list. They each have strengths and include something or another not mentioned in the first one. But for now, at least I can offer a reference place to start.

Boring Brown Socks

The following was written to a blogger buddy on 3/9/05 when the grief was still too acute to write about in a public venue:
------------------------------------------------------------

I'm wearing really boring brown socks today because I dressed up to go to a meeting. But the socks are now tear-stained so I can't go to the meeting afterall. I thought I could just go on as normal until my grandmother's memorial this Saturday and thus the boring socks. But all the crying I did last night and this morning did not satiate my soul. In the midst of the first of the two meetings I was going to go to today, I burst into tears and ran out of the room. It was incredibly embarassing. I wonder how I'll face them all again. I suppose by once again trying to act as if nothing is wrong. I suppose that is what I do. Though this is the first time I've seen that side of myself this vividly.

The lights in this room go on by motion detectors. They came on when I walked into this empty computer lab, but they have since turned themselves off again. I was planning on going to the water for solace. But there is a nice peace in this dark, empty room right now, too.

Laughing with Bobby

Laughing is such a joy and is so much a part of life. Whenever possible, it should be incorporated into death as well. I'm always being accused of taking life too seriously. But as serious as I am, I definitely appreciate the pleasure that laughter brings. Thus I've got my list of humorous death links in my side bar.

My sister didn't want to say anything at my grandmother's memorial. But the night before the service, we stayed up late into the night. My sister told me funny stories she remembered from our childhood. "Oh you must tell them tomorrow at the memorial. Bobby had a great sense of humor and would want us to laugh, too." I hope the following text from my sister's reading at the memorial at least brings you a smile, too. Bobby loved to share jokes and would want you to laugh with us.

"As you know, my grandmother Bobby was a free spirit with a great sense of humor. She was also a generous woman.

"She didn't bat an eye when I asked her to watch my dog Joey when I went into the Peace Corps. While I was away, Bobby was great about sending me photos to let me know how Joey was doing. I'd flip the photos over and they'd say, "Joey with a new haircut" or "Joey playing with Sweetie." I soon realized that getting Joey back from Bobby might not be as easy. Soon I'd flip over the phottos and they'd just say, "My dog."

"One year, my dad and I came to visit and the three of us went to dinner. Bobby turned to me and dead panned, "Are you drinking a lot of alcohol? Are you experimenting with drugs? Are you having casual sex?" I was shocked by her questions and replied, "But, Bobby, I'm only eleven."

"Surprisingly, no one has mentioned Bobby's gifts. The great beauty was that you would never know what would be in those packages. In one package there would be a sweet little figurine of a mouse using a pea pod as a canoe. And the next package would have a pair of fire engine red lace underwear. [When I opened the package of underwear, I thought to myself, "My god! My grandmother thinks I'm a pole dancer."]

"I'm miss my grandmother, Bobby, very much. Without a doubt, Christmas morning will never be the same."

On a not so humorous note, my grandmother has finally been cremated and her ashes will be mailed to me today. Let's all hope they arrive safely.

Daughters and Sons

At a recent End-of-Life conference that I attended, one of the speakers asked attendees to please raise their hand if they had either a daughter or a daughter-in-law. About half of the room raised their hands. She explained the purpose of this exercise, "You are the lucky ones. Statistically, you are more likely to remain living at home when you are seriously ill and are more likely to die at home."

At the time, I questioned in my mind whether in fact this could be true. Are people with daughters truly better cared for at the end of life than people with sons? Having no children, I didn't see an immediate relevance in my life and let the exercise disappear into the back of my mind.

When my grandmother died, however, I wondered how the fact that she'd had two sons affected the events prior to and after her death. She had one daughter-in-law whom she didn't get along particularly well with and two ex-daughters-in-law from her other sons previous marriages whom she'd maintained relationships with. But I don't think any of these three women would have felt the same responsibilities as a daughter would have.

Housing was scarce in Florida. Most family lived elsewhere. Bobby had moved there to be near her sister after her grandchildren were born. Her sister died several years ago (I have written about her death a couple of times now). One of Bobby's sons, my uncle, moved there recently and was also nearby.

When making housing arrangements for the memorial, my Dad suggested I stay at Bobby's place. I liked the idea of being near her in that way and agreed. I didn't realize, however, that this also meant I would be accepting lots of responsibilties, such as going through her toiletries and makeup and clothes to clear things out by the following Sunday. I'm glad my sister stayed there with me so I wasn't going through all of those personal items alone. My sweetie was there and also helped quite a bit - in a practical as well as an emotional sense.

When my grandmother died, my father told me that she'd wanted to be cremated and arrangements had been made for that. When I asked if there would be a viewing before her cremation, my dad said, "No." I got the phone number to the crematorium and arranged a viewing for myself, since no one else seemed interested in going. However, on the day of the viewing, my Dad and sister both decided to come along.

My Dad also told me that Bobby hadn't made any requests for what to do with her ashes, so they were just going to leave them at the crematorium. I was shocked. "No, let me have them. I want to know where they are. I don't want to think of them sitting in a box on a shelf of unclaimed ashes at a crematorium. Maybe I'll scatter them at an animal shelter. Or even if I just scatter them in a national park, I'll be happier with that than with leaving them at the crematorium."

A few days later, my Dad admitted that he was happy I was taking the ashes and that I would do something with them.

This side of my family (including my Dad) is very practical and pragmatic - not particularly sentimental. They all agreed that the ashes were not Bobby and that she was gone and they all disassociated themselves from the ashes through this logic. I know that Bobby is not in those ashes. I only stayed at the viewing for a few minutes. As soon as I saw her body, I knew she wasn't there. I closed my eyes as I talked to her and cried - after laying my hand on her cold, clammy corpse. But seeing the body helped me to accept that she was gone.

And just as it was important for me to see the empty vessel that her body had become, it is also important for me to do something with her ashes. It will be a symbolic act for me. And I know it is more about me at this point than it is about her. But I want to do this one final act of love and dignity in her honor.

Unfortunately, the doctor from Bobby's nursing home did not have enough respect for our grief and loss to come and sign the death certificate before we left town. So Bobby's body has not yet been cremated. The crematorium said they will mail her ashes to me. I suppose it would have been hard taking her with me on the plane - in many ways. So it may be just as well. Though I definitely feel some offense by the lack of consideration on the part of this doctor. There is an added stress worrying about these kinds of details. But my grief would have continued regardless.

I have learned a lot about myself and about my family through my grandmother's death. No one is my family is a great communicator - including myself. I regret that my cousin D (hi D!) found out about our grandmother's stroke through my blog. And that she found out about our grandmother's death via an email I wrote in which I assumed she already knew. I made the plans for her viewing and ashes in a panic after learning nothing was going to be done. Perhaps others would have liked to attend the viewing or had thoughts as to what to do about the ashes.

Again, not having expected to have these responsibilities, I didn't really know how to do them. As I felt myself getting swallowed up in my grief those first 24 hours, I kept thinking that I wished someone would tell me what I was supppose to do. Working in death, I had higher expectations for myself, I guess. But I've never seen this side of it so closely before. My mom took care of the arrangements after
her mother's death. My cousin and uncle took care of all of the arrangements for my aunt after her death. My aunt and cousins took care of the arrrangements for my cousin after her death a few years ago. Despite having attended a number of funerals, I had no idea what all was included in this process.

I have learned a lot about myself. I hope I haven't hurt anyone's feelings as I've struggled to find my way through the practical while feeling all this grief.

Each day has been a little easier. And I think now that I am getting longer reprieves from the acuteness of my grief I am worried more about my living loved ones. I am thankful that my cousin D, my sister and I handled the distribution of Bobby's possessions as well as we did. I'm fairly certain we each left with a few meaningful momentos of our grandmother's life. And I'm fairly certain she will be remembered in our hearts.

Thank You

I just got back from my trip to Florida to attend my grandmother's memorial service. I hadn't been on-line since the 9th. So what a welcome back! Your supportive words found in my comments mean so very much to me. You have truly warmed a very achey heart. Thank you so much - each and every one of you.

[sigh] There is so much I want to say and share about this experience of my grandmother's death. For today, I think the most I can handle, however, is to share the piece I read at my grandmother's service.

"Bobby was uniquely eccentric. She was certainly not your typical grandmother. She was the wild grandmother who:

-danced all over the world
-had up to nine cats and dogs at any given time
-drove a sports car until just shortly before she died (at 92)
-and as I recently disccovered, managed to get a driver's license printed stating she was ten years younger than she was!

She was also one of my best friends.

I keep thinking of stories but I'm not sure which to share.

-the pack of dogs gathered around her as she read the newspaper in her famly room
-the Space Sticks, Dr. Pepper and Starcrunches
-the time she tried to convince me to taste a milkbone.

I spent so much time gathering stories for her biography that I want to now say something new. Something profound.

The way it warmed my heart when she told me that she loved me on the phone. I knew it was true. She didn't need to say it. But the words felt like I'd been graced with a gift.

Bobby and I took turns exchanging letters. One week she'd write to me The next week I'd write to her. Sometimes she'd send printouts of funny emails [she never learned how to forward messages electronically]. Sometimes she'd tell me about her latest animal rights crusade and try to get me involved in it. But always, she offered words of support and encouragement.

I will miss her letters greatly. But I know I will always carry the great love of my grandmother in my heart.

Now I'd like to share a poem that has provided me with some comfort during this difficult time.

Autumn Sonnets #2 by May Sarton

If I can let you go as trees let go
Their leaves, so casually, one by one
If I can come to know what they do know,
That fall is the release, the consummation
Then fear of time and the uncertain fruit
Would not distemper the great lucid skies
This strangest autumn, mellow and acute.
If I can take the dark with open eyes
And call it seasonal, not harsh or strange.
(For love itself may need a time of sleep),
And tree-like, stand unmoved before the change.
Lose what I lose to keep what I can keep,
The strong root still alive under the snow.
Love will endure - if I can let you go."

I had practiced reading this twice over the night before in front of my sister and my sweetie. I thought I'd be able to get through it fairly well. I've done lots of public speaking, so I assumed I'd just flip on my public speaking persona. No such luck. I sobbed as I read.

The poem meant a lot to me in particular because we had been going through my grandmother's belongings for days and I was finding the experience acutely painful and distressing. I didn't like to think of all of these physical objects which somehow represented her being scattered about the country. As my sweetie pointed out, I suddenly had an understanding of people who leave bedrooms exactly the same for months after someone has died. And I developed a new nostalgia for the days when generation after generation of people lived in the same house. At least then I might have felt my grandmother with me more strongly now. But I have brought her cat home with me - along with some clothes that make me think of my grandmother and copies of photos and such. These things help to keep her close. When my aunt passed away a few years ago, I'd occasionally feel her nearby watching. I haven't felt Bobby in that same way - at least not yet; I mostly feel her inside my heart.

When I first got the news, I pretty much cried for 24 hours straight. Then I had an agenda - get to Florida and that helped keep the tears at bay. Now the crying comes in jags. I know grief takes time and am trying not to push myself too hard.

At the memorial, I felt a lot of pressure (from the minister who gave the service and from a few random others) to be happy for my grandmother's long and full life and to not feel sad. I even felt this pressure from my grandmother as she asked me explicitly not to cry before she died. I felt some anger about this on the flight home. Of course I'm happy for my grandmother, but it's unrealistic to expect me not to feel sad, too. I felt very close to my grandmother. So her death is definitely a loss for me. I know in time I will find peace as she has. But for now, please let me cry.

She asked me not to weep...

...when this day came.

I’m sorry, Bobby. I can’t help the tears.

I am so angry. Why didn’t I listen to myself?

On the phone with Dad on Friday, I said I thought she was dying. I wanted to go see her. I begged him to buy me a plane ticket. “I need to see her before she dies.”

Oh, she’s not dying, he assured me.

I argued. I provided the facts. But the wall of denial would not crumble and fall. And my own hope grew.

I hadn’t written a letter to her since… when? I used to write her letters at least every other week. But drowning in school, the letters thinned. Thrusting my head into books about other people’s loved ones’ deaths, I couldn’t see what was coming.

My horoscope hinted that a death might come. But I shrugged it off. Every day brings death and dying into my life.

She was always so supportive of me. When I told her I thought I was gay, she said, “Well, we each dance to our own tune. Perhaps you should use a sperm bank if you decide to have a baby.” From it’s okay that you’re gay to sperm bank in that same first letter – I’m serious. She made me laugh and smile even in her seriousness.

And like grandmother, like grandchild. She danced to a tune that could only have been her own.

Why didn’t I visit? I am so angry at myself. I work with death all the time – why didn’t I listen to my own advice? What would $350 have been on my credit card compared to the chance to say goodbye. Loving memories are priceless; regret such a bitter pill.

Bobby is what we all called our grandmother.

I hope she didn’t die alone. I wish I could have held her hand as she breathed her last breath.

My grandmother, Cicely, Diane, Bobby. My grandmother who held me as my adolescent face shed tears of profound sorrow. My grandmother who learned to email so we could write her biography together more easily. My grandmother who had planned a trip to dance in Argentina when she had her stroke. My grandmother who hated the nursing home she was trapped in. My grandmother who loved me and whom I loved.

My grief isn’t eloquent or funny like so many others who can turn their bottomless sorrow into art. My grief lies flat and lifeless. Two-dimensional.

My grandmother died tonight at 5:30pm EST.

Caregiver Strain

Caregiver strain is not exactly my area of expertise. But it is definitely something that anyone working with patients with life-threatening illness or anyone who has cared for elderly parents is aware of to some degree or another.

What is Caregiver Strain?

Some researchers have defined it as the demands, responsibilities, difficulties and negative psychic consequences of caring for relatives with special needs. Some of the symptoms of caregiver strain include feelings of grief, guilt, fatigue, resentment, embarassment, increased irritability, loneliness and isolation, anger, and self-blame. Many of these feelings are normal and to be expected, but when they are constant or interfering with your life, it's important to reach out for help. These feelings can also lead to loss of interest in providing care, increased alcohol consumption, insomnia, and weight loss or weight gain. If you are experiencing any of these changes in your lifestyle, contact your health care provider for assistance.

The Journal of Gerontology published an excellent tool for assessing for caregiver strain. This tool can help a third party spot caregiver strain in a loved one.

But what can be done about caregiver strain?

Getting assistance with supportive resources is essential. This support may come from within the family or from the community. This includes financial support, someone to come in and give you a rest referred to as "respite care," help with transportation if necessary (such as taking your loved one to a medical appointment and giving you some time off).

Tools such as the ones above can help social workers identify areas of strength and weakness for individual caregivers and aids them in identifying what resources may be appropriate to prevent or alleviate caregiver strain. Support groups for caregivers have been incredibly helpful for many.

As caregivers for people with Altzheimer's face particularly difficult challenges, there are many resources for Altzheimer's families that may have useful information for other caregivers, including this site on looking after personal and emotional stress.

And the University of Virginia has a great site called site Loving Care that has many helpful suggestions as well.

Caregiver Strain has been shown to have negative effects on the health of the caregiver. So these feelings of burnout should not be ignored.

I welcome any recommendations for support for caregivers and welcome caregivers to share their stories. You are not alone.

Needs Assessment

I went to an incredible conference recently that has fed all sorts of new topics that I'm planning on posting about as soon as I get the time to really sit down to it. But I'm wondering if you all would mind giving me some feedback - what has been most useful / informative / interesting to you. I got a lot of feedback in support of the scenarios. Are there other types of posts that other people like better - like:

-symptomatology
-communication tips
-ethical dilemmas
-personal stories
-practical tips for caring for patients (ie preparing a dead body)
-religious differences with views on death and post-mortem care
-etc

I'd appreciate any feedback.

Professional Boundaries - Part II

In my last post, I listed several actions that may or may not be viewed as a breach of professional boundaries. I then asked for people's opinions of the described actions - were they in fact breaking boundaries?

I expected a slightly more lively debate than what appeared in the comments. People seemed frightened off by the first two people who said they were all breaking boundaries.

The truth of the matter is, when you read about professional boundaries, you almost never get a list of "yes, this is okay" and "no, this is not okay." The reason for this is because boundaries are not always black and white. Anyone who has experience in hospice, oncology (cancer care), or psychiatry is probably more likely to be aware of the lack of a clear line than in most other fields.

First of all, the basic principle to keep in mind when contemplating boundaries is the fact that nurses have more power in nurse-patient relationships than patients do. Therefore, much like with a teacher-student relationship, effort must be made not to violate that power. This makes developing romantic relationships between health care providers and their patients clearly a breach in the boundary. This is the most clear boundary - I would even say the only boundary that is that crystal clear.

Another set of questions to ask yourself when in situations that make you feel concerned that you may be breaking a boundary:

-Who is benefitting most from this action?
-What do I stand to gain from this action?
-How will this patient feel if the next nurse/chaplain/health care provider does not do the same for me/treat me the same? Should they expect the same treatment from everyone?

It is understandably human nature that in certain circumstances, a level of kinship develops when nurses and patients work together for longer periods of time than normal. If you normally see a patient for a week before they're discharged from the hospital, then one patient has stayed for a month, a different type of rapport will likely be established.

This same can hold true for nurses who work with patients dealing with major existential issues - such as patients who are dying and patients who have an acute life-threatening illness.

In these cases, however, special care needs to be taken. The boundaries may blur some, however, one must maintain some boundaries so as not to get burnt out and quit your job because you're constantly overextending yourself. Maintaining boundaries can be especially difficult in these professions. Partly because of the nature of the work and partly because of the personalities of the people whom tend to be drawn to this type of work.

Boundaries must also be reviewed on a case-by-case basis. For some cultures, sitting on the edge of the bed may be viewed as disrespectful. However, for other cultures and for patients grappling with life or death issues, sitting on the edge of the bed for a minute may provide more comfort than standing over their bed for 15 minutes. Of course, always ask for permission first. Never assume anything about people's comfort level based on culture alone. And for some nurses, sitting on the edge of the bed may never be acceptable. I, personally, tend to squat down to put myself at eye level with patients who are particularly upset rather than sit on the bed. Though I have sat on one or two beds in my career thus far.

Finally, keep in mind that once a boundary has been broken, it is nearly impossible to restore it. If you've given the patient your home phone number while you are out of town, don't expect them to stop using it once you're back to work. And don't make promises that you can't keep. If you tell the patient that you will visit them in their new facility, the boundary has already been broken.

Condolance cards are a tricky one. While they are strongly encouraged by most palliative care and hospice organizations, copying any information out of a patient's chart is breaking a law called HIPAA, which states that health care providers may receive information about each patient only as needed to treat that patient. A condolance card does not necessarily fall under "treatment," though I suppose one might argue it falls under treating the family's grief.

I hope I've illustrated how grey boundaries can be. Some people may disagree with me, as well.

For more information, to help you make your own decisions about professional boundaries, I've compiled a list of websites that provide valuable insight into determining whether or not someone is breaking a boundary. Unfortunately, I don't have the list on me as I write today. But I will post it later, as an addendum to this same post for those who are interested.

Thanks so much to everyone who provided comments in the last post. I hope you found the exercise useful.

--More on Professional Boundaries--