Friday, December 21, 2012

Bringing A Snow Cone To Hell

Kacy and I have visited our first hospice/Transitions* clients together. They are three adults in a facility for people with dementia -- a small neighborhood home in my metropolitan area. Severe dementia can be a primary diagnosis for hospice, though two of my three clients also have cancers. The setup for our visits is most of the house's residents are gathered in the living room, and I visit with all of them who are alert even though my primary focus is working with the three clients of my hospice agency.

The title for this post came from a comment my husband, David, made when I told him about my first visit to the facility. It seems to have very little stimulation for residents, and they really reacted to the presence of the dog. "It sounds like you brought a snow cone to hell," David said. The Transitions client is the only one who can still speak, but she has no interest in Kacy or me and sleeps all the time. The first hospice client, "Lila," is very awake and alert and took a keen interest in Kacy. She pets her quite a bit, and interestingly, when I gave her a stuffed animal to hold when another resident was holding Kacy, she threw it down and gave me a look like, "You are not going to fool me with a stuffed animal!" Lila spends a lot of time picking Kacy up on the couch and putting her back down again, as well as clipping and unclipping her lead to her collar. Lila, Kacy, and I also take walks around the facility together. On our first visit to the facility, a nurse and social worker from my agency met us and said that Lila was far more animated in Kacy's presence than she normally is, so that was gratifying.

The second hospice client was even more interesting to me. "Dr. White" is a 60-something year old physician also with advanced dementia. He also no longer can speak and has a very flat affect, until he gets a hold of Kacy. Seeing him transform with her is almost as close to a miracle as I've ever witnessed. He strokes her and touches her, burying his face in her fur. Most touchingly, Dr. White kisses Kacy so tenderly. This is a man who has lost the ability to express affection in any other capacity, according to his caregivers, yet he kisses the dog. The first time I saw this I almost burst into tears on the spot, but luckily held it together.

I was thinking about why animals are so great for dementia patients. Dr. White had small dogs earlier in his life, so maybe holding Kacy triggers warm fuzzies for him. Additionally, it occurred to me how hard it must be if dementia patients want to speak. There is a chance they want to, but just can't. Me talking to these patients puts an expectation of a response on them; Kacy demands no such response. Dr. White does not want to let go of Kacy when she's there. When I separate Kacy and Dr. White so she can visit the other residents, I assure him I'll bring her back to him, and whenever we leave I tell him that I'll return with her next week.

Whenever I tell people I'm a hospice volunteer they ask me if it is depressing. I am new to this, but at this point, the severe dementia I work with is far sadder to me than someone dying from disease.  Dementia patients return to a childlike state, and I see even well-meaning caregivers treating them like toddlers in adult bodies, and it makes me very sad. Dementia ages people severely: both of my hospice clients are in their 60s and look much, much older. There is a 65 year-old woman in the same facility (with a 25 year-old daughter) who became symptomatic at age 55. The patients in the facility I visit are safe and clean and well-fed, but I don't see a lot of effort going to keeping them stimulated. Perhaps this is more than we can ask staff earning minimum wage to do. That said, I handed Dr. White a ball of yarn to play with, which he did eagerly. This is the kind of accessory the facility could keep around, but doesn't. Witnessing patients transform when they are handling Kacy is, as I said, as close to a miracle as I've seen. I have no illusions that the patients remember me the second I walk out the door, so I am not getting to build intimate relationships with these clients. However, I also have no doubt that for the time the dog is there, their lives are better for those moments. For that reason, it is a privilege to bring a snow cone to hell.

*Transitions is a pre-hospice program for patients who are very ill but who don't yet meet hospice criteria.

Tuesday, December 11, 2012

Volunteering With Kacy

Kacy in her volunteer uniform
I have discovered a new passion: volunteering with my little Norwich Terrier, Kacy. I've always considered her therapeutic, because her raison d'etre, besides eating, is cuddling with humans. She craves contact with people in ways I've never seen in a dog.

I first heard about P.A.L. (People. Animals. Love.) from my primary care doctor a few years ago. It sounded interesting, but Kacy was too pugnacious with other dogs in her youth. When it became evident to the hospice organization I'm volunteering with how obsessed I am with Kacy, they asked me if I would consider having her certified by P.A.L. so she could accompany me on hospice visits. She is a senior lady now (nine and a half years old), and has chilled out considerably, so we decided to give it a try. P.A.L. is not a therapy animal organization, so they have a more attainable standard for their pet volunteers. Kacy had to go on an orientation where she demonstrated her sociability and her ability to respond to basic commands like sit, stay, come, and heel. Of course, we had to provide records showing she was current with her vaccinations. We then had to go on two evaluation visits, which are real visits with other established P.A.L. volunteers. The team leader watched how we each handled ourselves and had to sign off on a form saying we were a good fit for this type of work. Luckily, Kacy and I passed. We did both of our evaluation visits at a nursing home in our city, where we continue to volunteer. You'll notice Kacy wearing her P.A.L. bandanna in the photo. When we volunteer with P.A.L., other dogs and their handlers are there, and we are building a rapport with some of the other regulars, including Romeo, the amazing skateboarding Sheltie.

Sunday was our third visit with P.A.L. to the nursing home, and we are starting to build relationships with the residents who remember us. There is a charming woman who loves dogs of all sizes. Another 98 year old resident always proudly tells me her mother was a nurse for President Roosevelt, and that she herself worked for the federal government for 40 years. There are also non-verbal residents who also respond to the dog. If you've never seen this happen, it's amazing: people who otherwise don't respond very well can get "woken up" by interacting with an animal. Nowhere have I seen this more dramatically than I did when I volunteered at a nursing home with my Westie, Arthur, in high school. There was a woman who had a massive stroke who lay catatonic in her bed except when we put Arthur in it. Then, she would start to moan with pleasure and stroke him. The nursing staff would gather around to watch this because it was literally the only time this resident interacted with anything. I guess animals touch some deep place in our brains. At this nursing home, there are residents who don't speak but stop to pet the dogs. There are others who can't speak clearly anymore, but clearly enjoy cuddling Kacy on their laps.

The point of this work is not to have people make a fuss over the dog per se: Kacy is the bridge between me and other people. She opens up doors that I can't open by myself. Another example of this is our literacy work with kids. We went to the local library last week to let children practice their reading with dogs. There is a trend to use pets to help in this capacity, because many kids feel judged when they read to people; not so when they read to dogs. It really warmed my heart to have a 12 year-old (reading at a much lower level) read aloud to Kacy. It would not have appealed to her to read aloud to me, but she was keenly interested in snuggling with and engaging with the dog.

This has done wonders for my relationship with my little dog. I always enjoy her company, but it has reinvigorated our relationship to do this service work together. Once fearful of the car, now when I announce that we're getting in it, she darts down the stairs. I love seeing how she brings people out of their shells, and I just enjoy doing things with her. I am eager to see how Kacy does on our first joint hospice visit tomorrow. 

Thursday, December 6, 2012

Hospice Volunteer Training - Day Three

My final day of hospice volunteer training started with a long safety lecture all about infections and universal precautions on how to prevent them. No joke, my notes on this lecture state, "Please enclose me in a plastic bubble." Most of this lecture could be boiled down to three important words: wash your hands. At the end of the lecture, delivered by a registered nurse, we were treated to a tuberculosis test. Thank God, I didn't react to it, because I've heard dealing with the D.C. Department of Health on this matter is a pain in the arse the likes of which I've never experienced. Yes, that was my chief concern, not testing positive because I might have been exposed to TB.

The second segment focused on legal issues at the end of life, such as advanced directives, appointing a durable power of attorney, and living wills. I learned a surprising statistic: only ten percent of us die suddenly. The rest of us have a slow decline, and are likely to end up in medical situations requiring delicate decisions. I found this unit emotionally difficult, because I think that too many of those situations are game-time calls. I would find it very difficult to lay out my final wishes for a death scenario I can't even begin to imagine. Luckily, you do have the option of signing a statement in an advance directive such as, "I realize I cannot foresee everything that might happen after I can no longer decide for myself. My stated preferences are meant to guide whoever is making decisions on my behalf and my health care providers, but I authorize them to be flexible in applying these statements if they feel that doing so would be in my best interest" (that is from the Maryland Advance Directive, available here). The one immediate point I took away for myself is that I need to ask someone to be my local backup in case my husband wasn't available.

The social worker who gave the presentation on end-of-life legal issues also reminded me of the Five Wishes, a simpler way of letting people know how you'd like medical issues to be handled at the end of your life. This is valid in 40 states and the District of Columbia. Regardless of how you choose to document your end-of-life preferences, please do so, and don't wait until you think it's "time." People die at all ages, sadly.

The last unit of my hospice volunteer training was all about working with patients with dementia. I need to re-read this section of my manual, because my first hospice assignment starting next week will be with three patients with the disease. We were taught not to make demands of dementia patients that they can't handle. For example, it is less taxing on them to ask, "Do you like watching TV?" than to ask, "What is your favorite TV show?" The social worker/nurse emphasized that when working with dementia patients, you're obviously not going to be cultivating long-term relationships (I realize this is relative, since we are discussing hospice) since the patients likely won't remember you week to week. Thus, presence is key. My personal feeling about this is that if I make the life of a dementia patient at all better in the moment, then my visit is a success, so I am not overly bothered by the absence of any lasting connection with me on their part.

Finally, we had paperwork galore to fill out (like permission for the background check), as well as a tutorial about the reports we have to file within three days of seeing our clients. My perception of the 20 hour training was that they did a great job. I loved hearing from the people who do these hospice jobs, and the material was always interesting and felt relevant. I think a piece of me wanted them to do a play-by-play of every scenario you could encounter, because I crave this kind of black-and-white guidance in general. Of course, we all know that life is nuanced. You can't script encounters, and I think the way you get to be "good" at being a hospice volunteer is by doing it. I am eager to start next week and will let you know how it goes.

Saturday, December 1, 2012

Suffering and Service

"To go into the dark with a light is to know the light. To know the dark, go dark. Go without sight and find that the dark, too, blooms and sings..." -- Wendell Berry

"You can argue with the way things are. You'll lose, but only 100% of the time." -- Byron Katie

The last three weeks have been immensely challenging for me. I am in the middle of a pain flare, and not my usual pain: this is a new back pain felt deep in my butt that makes it very hard to walk, shift position, or even turn over. The suspected cause is ligament laxity, which has been a constant issue for me. This laxity and the numerous aches and pains it causes is the reason I'm getting prolotherapy, a procedure in which a physician injects dextrose to tighten the ligaments. The principle behind this therapy is that you irritate the tissue initially, and then it responds by tightening up. This is the only non-surgical way to tighten a ligament (I've had surgery to do this in my ankle). My last prolo session was actually done with Platelet-Rich Plasma (PRP), in which my wizard doctor added my blood to the prolo mix to increase the inflammation factor and healing potential. Let's just say, it definitely increased the inflammation factor. There's no way to know, but there is a chance that I've had a temporary setback from the procedure. I'm at week 4 after the PRP and you typically don't see any positive effects until week 6. Often, there is a loosening before the tightening, and there is a good chance that this is what is causing my current pain.

The expectation is that this will pass, but in the mean time it is truly miserable and infuriating. I have had countless chiropractic and orthopedic adjustments, trigger point injections, and just yesterday, sacroiliac joint cortisone injections to try to lessen the pain. Drugs of any time are a joke; you may as well be giving me a placebo. So, in the meantime, I have to tough it out and give myself high doses of compassion.

You would think that with all of my issues, I would be no stranger to pain. But as a friend of mine with multiple health issues said to me earlier this week, "Whenever it's a new part of my body, I really freak out." I related to that. I know how to manage my fibromyalgia and Lyme pain, but the back pain is really frustrating. Worse than the discomfort is the impact it has on my life: walking even short distances is painful, as is bending down, like I do 100 times a day to pick up the dog, do laundry, or pick up my shoes.

The interesting lesson of this pain flare is how much service helps my spirit when nothing can soothe my body. I have been throwing myself into it as of late, volunteering many hours with a number of charities that are meaningful to me. On Thursday, I had the privilege of sitting with a very ill child who has been in the intensive care unit at the hospital for several months. I was in excruciating pain, but the truth is, I am hurting wherever I am. If I had stayed home, I definitely would have been stuck in a lot of "poor me" thinking. At the hospital, at least I was providing service for the patient and her family. Getting out of my head really helped me, probably a lot more than I was helping anyone else. One of the biggest lessons for me as a chronic pain patient is that there is a world of difference between pain and suffering. Staying at home, wallowing in my pain leads to suffering. When I am doing volunteer work, I might be in pain, but I am definitely not suffering. This insight is new to me, and is the darkness that "blooms and sings," as is so eloquently stated in the Berry poem excerpted above.

Service work gets me out of my head, and bonds me to the greater community of humanity. It also can be a good way to keep my situation in perspective. I say this not to minimize what I'm experiencing, because it really sucks. However, it is helpful to be able to hold it in the larger awareness of the suffering other people are experiencing.