Wednesday, February 24, 2010

Update

This Sunday I head back to the Center for Loss and Life Transition in Ft. Collins, CO for another bereavement training. My laptop is on the fritz so I won't be able to post until I'm back in town- hopefully my laptop will be healthy by then!

If time and my memory permit, I'll have to tell you about the on-call visit on Sunday with a bedside singing family and Monday's daylong visit for the death of a patient. Yep, it's been one of those weeks where I know I'm helping people and making a difference.

On another note, I've come up with a goal of reaching 50 followers for this blog. I've come a long way from the days when just a few friends and family frequented here. I'm honored by the comments and emails that let me know this blog has been a good resource or has opened their eyes to end of life issues. I'm at 40 now (and at 37 when I first wrote this goal down!) so if you'd like to keep up with my posts, click on the Follower tab to the right. Thank you!

And stay tuned for a big announcement in the coming months...any guesses?

Thursday, February 18, 2010

Confusion

Two stories related to patients with Alzheimer's:

1. "Raphael" lives on a Memory Unit at an Assisted Living Facility. He was a Ladies Man back in the day and yearns for those days. He often expresses sadness about his inability to have "hoochy koochy"- his wording, not mine. He seems harmless but I usually do joint visits with the hospice RN just to be on the safe side. One recent visit he was sitting in the common area with another resident "Wanda." Wanda was quite jealous of the hospice RN, whom she believed was trying to take "her" man away from her. Wanda would turn to Raphael and ask "Am I your girlfriend?" He would try to answer diplomatically, often telling her that his wife was his first love and only girlfriend. A minute later Wanda would ask "Are you my boyfriend?" Then "Are you cheating on me?" And then back to "Am I your girlfriend?" Then she would intersperse comments to the RN, whenever she thought Raphael was getting a little too close or just to state her territory. I wish I had a transcript because it was one of the funniest things ever.

2. The patient is a woman with Alzheimer's. Her husband has the disease too but is still ambulatory, conversant, and functions relatively well despite his confusion and tendency to wander. He is not clear on what is happening to his wife. She is close to actively dying. Their children have certainly been through a lot in watching their mother's decline and knowing what lies ahead for their father. I talked to the daughters for some time at the patient's bedside. Her husband came back into the room and lay down on his twin bed, which is next to her hospital bed. He seemed worried, he knows something has changed. He asked a few questions about his wife, mostly concerned with whether she had eaten or not. Then he lapsed into his own world. But for those few moments, all you could see was a man in love with his wife.

Friday, February 12, 2010

Self-Care Update

I confessed a while back that I had become burned out. Some of you made helpful suggestions and asked me to write out a self-care plan. I had the best of intentions of sharing my self-care plan with you all but somehow life carried on, I was refreshed, and it got lost in the shuffle. However, I just completed an e-course that has helped me in so many ways that I can't help but share it with you all.

Shannon Kinney-Duh created the month-long Inside Out e-course. I liked the premise of using art and journaling as a means of self-discovery. Five days a week there are daily writing, art and creative play exercises. The writing exercises really help us in examining our strengths, passions, and the direction we want our lives to take. But it also helps us to enjoy the present moment, to be still, to breathe. The course also has weekly guided meditations and yoga tips. One neat aspect is our private class blog and Facebook group.

I've always had a creative side but since grad school, I've been lax about expressing that side of me. One of my intentions when I started the e-course was to figure out a place in my apartment where my art supplies would be more accessible. They were in the back of my closet, which was a handy storage space but did not promote actually using anything. Since I live in apartment, there's not a lot of free space but the supplies are now next to my stereo where I used to keep paper waiting to be recycled. Success! I have realized all over again my joy in painting, doodling, and sketching. And more importantly, this is a huge stress reliever! I had completely forgotten how relaxing it was to create. I learned many other things through Inside Out but that's for another time and another place. My challenge to you is to consider whether art and/or journaling can find a place in your self-care routine.

The next Inside Out e-course starts April 5. Registration opened February 4. I would highly encourage you to give it a try no matter what your background is, no matter how creative (or uncreative as the case may be) you may be. You can email Shannon with questions at livefreely @ mac dot com. The video below has highlights of some of the class member's journal pages and our group manifesto.

Tuesday, February 09, 2010

Babette's Scarf

I've had the pleasure of knowing "Babette" for a few months now. I usually visit with her for a couple of hours and send her daughter and son-in-law out to run errands or just spend time with each other outside of their home. Babette has an amazing life story and I love soaking in her wisdom. Confidentiality prevents me from telling some of the more unusual aspects of her life, unfortunately. She immigrated from eastern Europe when she was a teenager; her father was already in the US and sent for her. When she arrived, she found out that he had died. Can you imagine being in that predicament? The precursors to WWII were starting back home so she couldn't send for the rest of her family either. She met and married her husband, who then joined the military and fought during the war. She raised her family, weathering several losses. She has a truly positive attitude. She is accepting of her decline and feels ready to die. Last week, in fact, she told me when she goes to bed at night she hopes she won't wake up and that she is disappointed when she wakes up in the morning. Babette had a bit of adjusting to do when she first became ill; she felt a lack of purpose. She was used to working on projects and staying active. When I first visited, she told me she didn't want to start something and then get too sick to finish it. However, it didn't take much to convince her to start out slow and pay attention to what her body was telling her. Her daughter helped her with some sewing projects and Babette started crocheting again.

There was a few week gap between visits while I was on vacation because of the way my trip fell. When I returned from North Carolina, Babette was so happy to see me. She told me to go out to the kitchen and get her the scarf. I thought she was cold so I found the scarf and brought it in to her room. She told me she had made it for me! Babette crocheted scarves for the hospice RN and volunteer as well, plus one final scarf for her daughter. She said mine was the second to last scarf she made and she knew her crocheting days were done, her hands were too stiff now. She said she and her daughter had been paying attention to what clothes I wore each week so they could pick the right color. How sweet is that? She finished it while I was in NC and then anxiously waited for me to come back so she could give it to me. I've worn it just about every day since she gave it to me last month. Such a precious, warm gift.

Sunday, February 07, 2010

Unexpected

I've written before when a patient "surprises" us by not following the normal end of life trajectory. There are signs and symptoms that death is getting nearer, even up to a few months before a person dies. We, as hospice professionals, note these changes each visit and prepare the patient and family for what is going to happen. Every once in awhile, the unexpected happens. You may be talking to the patient, nothing appears amiss and two hours later, they're dead. My experience Friday takes the cake, however.

The lady had only been on our program for a couple of weeks. In fact, I hadn't met her yet because her POAH was going to be out of town and they wanted to delay our first visit until next Tuesday, when another friend would join us. The patient had no children but had a group of friends that were like family to her. On our first visit we were going to talk about Advance Directives, long-term care planning, and all that good stuff. She was in no way imminent and was living at home independently. I happened to be with the hospice RN when she got the call from the office. The patient's POAH "June" was back and supposed to take the pt. to a doctor's appointment that morning but "Magda" wasn't answering the door. She had gone around the back of the house and could see that Magda was slumped over in her chair. While June waited for her husband to bring the spare key, the RN and I headed over. When I arrived, it was confirmed that Magda had died. Her friends had spoken with her the night before and nothing was different. They expected this morning would go smoothly with the doctor and then they were going to finish taking down the Christmas tree decorations, which Magda decorated magnificently and always kept up through at least the end of January. June could not have guessed that the last time she would see Magda face to face would be before she went out of town last week.

Magda looked absolutely peaceful. She had her make-up on, which her friends said was a daily custom. She was drinking her morning coffee. We won't ever know what she died of but it didn't appear to cause her any pain or discomfort. June and her friend "Betsy" found comfort that Magda died so unexpectedly. They said Magda would have had a hard time letting a hired caregiver take care of her whenever it became necessary. Magda always took care of everyone else and could be private about her own business. We sat and talked about Magda's life while we waited for the funeral home, which Magda had pre-arranged several years ago. She sounded like a firecracker of a lady. I would have enjoyed getting to know her but for her sake, I'm glad we'll never get to meet.

Saturday, February 06, 2010

Confronting God

Earlier this week I went to meet with the family of a new pt. He was in his 40s, just diagnosed with the nasty glioblastoma in December and now on hospice. He had 2 teenage children and a wonderful wife, as well as a huge network of support from his extended family, friends, neighbors, and church. This was a man who was dearly loved by all who ever met him. He was mostly unresponsive the day I was there and his wife knew it was a matter of time. She talked about how blessed they have been by the help they've received from their community: prayers, meals, fundraisers. She talked about how strong the patient's faith is, how it has grown even stronger as he has declined. He is minutes from heaven where he would meet God and where there is no such thing as glioblastoma, pain, or tears. Then she said, "And me? I just want to kick God in the balls." Imagery aside, I don't think these emotions are incongruous with faith.

The fact is we live in a fallen world. We live with war, disease, and the depravity of mankind. Most of us don't live with those realities on a day to day basis, outside of the occasional cold and jerky coworker. When something truly bad does happen, we are caught off guard even though we're not promised easy "get everything you want" lives. When you're basically content, it's not hard to believe that your life will continue going on that way. A terminal illness, of course, drastically changes one's outlook. We are forced to grapple with what we believe. I believe it is OK to question God because He desires a relationship with us. He wants to dialog about our lives. He wants to know what we're thinking and feeling. So when this wife talked about wanting to kick God in the balls, I thought, "what a perfect expression of her anger and helplessness." She didn't believe that God caused the cancer but she was angry that their prayers hadn't taken it away. She could still talk about God's goodness and faithfulness but that didn't negate her anger about losing her husband. I'm glad she felt free to express herself. We may never understand why bad things happen but God knows and He will use all things, no matter how awful, for good (Romans 8:28).

Thursday, February 04, 2010

Tuesday, February 02, 2010

Oscar

Meet Oscar the "Death Cat." Please don't think of him as a furry grim reaper; he's been thanked by families in their loved one's obituary for the comfort he offered during their final hours. Oscar is a therapy cat at Steere House Nursing and Rehabilitation Center in Providence, R.I with an uncanny knack for predicting when nursing home patients are going to die. The facility cares for people with dementia and in the final stages of various illnesses. Oscar seeks out the dying, snuggling with the patient and family members until the patient passes; with others, he smells the patient's feet, sits outside a closed door until admitted, or refuses to leave a dying patient's bed. Since nursing staff first noted Oscar curling up with residents before they died, he has accurately predicted about 50 deaths. Dr. David Dosa first published an article about Oscar in 2007 in the New England Journal of Medicine and is now releasing a book 'Making Rounds With Oscar: The Extraordinary Gift of an Ordinary Cat.' Dosa notes, "I don't think Oscar is that unique, but he is in a unique environment. Animals are remarkable in their ability to see things we don't...Animals know when they are needed."