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.


Anonymous said...

Dementia and other debilitations scare me much more than death does - I don't know whether it's the loss of control, loss of dignity, or something else entirely, but I find that kind of decline very scary. I had a tiny inkling the other day when my eyes were dilated and I couldn't read: that was awful, and only a couple of hours long! I can't imagine being in a state where one's faculties are steadily drained away like you've seen- it seems so completely terrifying.

Going to the hospice and doing this type of work makes me deeply honored to know you, let alone be married to you. You're awesome, and I think you're doing God's work in bringing comfort and assistance to the dying.

Shoshana said...

I agree with @thegameiam; it's not dying that I find depressing as much as dementia. I feel like it is a total loss of dignity. When one's arms no longer work, they can use their legs for some things (and the other way around). When one sense starts to fail, the others can take over for some things. However, when one's mind start to fail them, they lose themselves.

Sarah said...

I agree with both of you. Dementia is terrifying. The scariest part to me is how early it can set in: there is a woman there who became demented at 55, and the same with a friend of mine, whose dementia set in around the same time. These are otherwise relatively young people in healthy bodies. It is just another reminder that all we have is today, so we have to make the most of it.

After I meditate, Kacy and I are headed to this facility. Thanks for your comments.

Janet said...

The lack of stimulation is really sad. Maybe it is more than we can ask that there be enough care-givers to interact with and stimulate a few million Americans with dementia, but the lack of interaction and stimulation really does seem to cause the lack of dignity, and I'm guessing the decline. I brought a portable music player to my grandmother when she had dementia, and she enjoyed it, but I'm pretty sure no one else ever turned on the music for her.

Stef said...

Sarah, I adore reading this post. You have made me seriously think about volunteering with a therapy dog. Perhaps I might train our next animal for this task... What a gift you and Kacy are able to give. Truly wonderful.