What a long day! It's 5:30pm and I'm ready for bed hehe
Ok, so... what I did today... attended a staff in-service where one of our HCCs gave a practice presentation on our special program we do for pts with dementia. Then saw two pts with the MT. Then shadowed one of our RNs and saw two pts with her. It doesn't sound like much when I type it here... but it was a very tiring day! But a good day. Very VERY thought-provoking...
~Presentation on our company's special program for patients with end stage Dementia
(based on book, The End of Life Namaste Care Program for People with Dementia by: Joyce Simard)
Namaste – peaceful Hindu gesture; expresses a wish to honor the spirit within
Create a calming, relaxing environment for the patient, i.e. washing feet and hands, massage, moisturizing with lotions, nourishment (treats)
Can be provided by any/all members of the care team
Candles (flameless), scents, music, and flowers can be used to create peaceful ambience
Facility staff, family, doctors, or care givers can fill out the Lifestyle Preference Appraisal form, which helps fully describe the patient’s preferences and activities. Examples: sleep habits, spirituality, religion, leisure activities pt enjoys with others, activities pt enjoys alone, favorite scents/music/flowers, fears, desires, dislikes, family members, pets, etc.
Stimulate all 5 senses:
• Smell shaving cream – reminisce about going to the barbershop
• Lavender scents – calming, relaxing
• Old Spice
• Touching/look at a colorful silk scarf – reminisce about going out dancing (while also doing exercises/stretching)
• Ponds body cream
• Blowing bubbles
• Listen to soft, calming music
• Soft speech guiding the patient through the process
• Offering lollipops or other such treats
Our first stop of the day was to see a new admission. She is Chinese and only speaks Mandarin. She was at a care facility that looked and felt much like a hospital. I believe her terminal diagnosis is debility NOS…
When we arrived, she was fast asleep. The MT got out her guitar, and sat down in a nearby chair (which adds a nice approachable, non-threatening sort of touch I think… kind of like when a server at a restaurant kneels down at your table to take your order… the person becomes literally at the same level of you.). She began to softly strum some chords on the guitar. The patient still did not awake. Her eyes blinked (even though they were already closed), and her left arm slightly twitched. The MT and I softly began to hum the melody to “Amazing Grace,” and continued on by singing the first two verses. Still, the patient continued to sleep. The MT tried one last song, “Dona Nobis Pacem”. Even still, the patient did not open her eyes.
It’s okay though… just because a patient isn’t clapping along or has a big smile on his/her face, it doesn’t mean the MT intervention wasn’t beneficial. I think especially for a pt in this sort of environment, soft singing and music can really help to create more of a comforting, caring environment. As the MT reiterated to a nurse today, hearing is the first sense to develop, and the last sense go. I like to think that even the pts who seem the most gone, they can still hear the music, and the music makes them feel secure, at peace, and that someone is there who cares, spending time with them.
We quietly exited her room and let her continue to rest. This visit would be documented as a “Music Therapy Assessment” (instead of a MT reassessment, for obvious reasons—it was the first visit.)
After leaving the care facility, we drove about 4 miles down the road to a board and care home. It was the first time I saw a home turned into a care center for patients! I think it’s a great idea. Nobody (or at least nobody I know) wants to live his/her life in a hospital (or a nursing home that looks like a hospital.) People like to feel comfortable and “at home.” What better way to feel at home than in an actual home! It was the cutest little house in a nice suburban neighborhood. We entered the home, and found our pt sitting at the kitchen table, nibbling on her lunch. Another resident was sitting next to her, happily enjoying some mint chocolate chip ice cream. Our pt had a bowl of milk (which I’m assuming had cereal at one time) and an itty bitty half of a sandwich. (Why the one resident had mint chocolate chip ice cream and our pt had a wimpy little sandwich and a bowl of milk is beyond me…) Since she was in the middle of eating her lunch, the MT decided to let her finish eating and to just return another day. She introduced me to the pt, and to the orange tabby in the corner named Charles. (Does HIPAA protect cats’ names?) The MT asked how she was doing, told her it was nice to see her, and that she would return another day to play music for her. And so, we’re on the road again… (just can’t wait to get on the road again... the life I love is making music with my friends… dah dah dah dah…….)
We left the second pts home around noon. It was then that the MT and I parted ways. She had a meeting with one of our HCCs back at the office, and I was scheduled to shadow one of our RNs.
I got in contact with the RN over the phone, and met her at pt #3’s house. This pt opted out of having music therapy, so I was a bit intrigued to meet him, and perhaps figure out why he didn’t want MT.
I drove straight to this pt’s house from the boarding care, so I arrived about 15 minutes before the nurse did. I wasn’t sure what to do, or if I was even at the right house, so I just sat in my car, roasting in the sun. I eventually got out my laptop to get a head start on typing all this blog spectacularness when I realized how much of a total creeper I must’ve looked like… there’s this girl sitting in her car parked outside my house, typing on her laptop… she must be a spy!
I swear I don’t work for the government… sometimes I wish I did! (sweet benefits!) but, I don’t, and whoever told you I do, lies.
But anyway, we were greeted at the door by a screaming tot, and a woman who was busy carrying another child. “The nurses are here!” she yelled, loud enough to be audible over top the blaring little bambino. I remember thinking to myself, “Nice! She thinks I’m a nurse too! So this is what it feels like…”
The pt’s wife came over and greeted us in the foyer. I could tell she was extremely exhausted the first second I saw her, despite the although convincing, forced smile on her face. She led us to the pt’s bedroom and proudly showed the new bed that was just delivered. Laying on the bed in a pair of flannel PJ’s, the bottoms turned inside out, was a quiet man, his gray hair pulled back into a short ponytail. Instantly I thought he looked like an aged rock star. I know you shouldn’t judge people by appearances, but the man practically screamed “Come play music with me!! I’ll play bass!” I stood in the doorway as the nurse began her assessment. She checked the pt’s vitals and asked if he had any problems. The pt’s terminal diagnosis is throat cancer, which makes it hard for him to swallow, move his mouth, or speak for that matter. He was absolutely miserable. Well really, beyond miserable. The nurse asked if he had any thoughts about hurting himself, to which he replied, calmly and honestly, “Yes.” The pt explained that he thinks these thoughts every day, and that he’s ready to go. He joked and asked for the nurse to give him morphine so he could die peacefully. He wasn’t really joking though… I wanted to jump in there and get into a deep discussion with him about why he wanted to die, and what he was feeling, but it wasn’t the proper time, and I am not at all experienced or mature enough to handle such an intensely deep conversation with someone who truly is suicidal… I did however introduce myself as the MTI, and let him know that we would be more than happy to come and play music with him. I told him it wasn’t cheesy or anything. The wife smiled and asked, “Will you rock out to some Led Zepplin?” I told her “Sure! Acoustic though.” He still said no thank you. I told him that was okay, and that if he changed his mind, just let the nurse know and we’ll come see him right away.
It was a tough situation… I was convinced (and still am) that he would really benefit from music therapy, but how do you convince someone who isn’t willing to try something new? The wife said that he even refused to see his own mother today. He’s just extremely depressed… he’s given up on life and just wants to die already. He doesn’t want visitors, or people to try and make him feel better. I remember him looking the nurse square in the eye and saying, “I’m suffering. I’m really suffering. I’m just ready to be done with this.” His emotions were so real and relatable. It made me think of times in my life when I was so frustrated that I just wanted to quit whatever I was failing at, and overcoming it took everything I had in me. This man is dying from cancer… he can’t eat or speak… he is too weak to get out of bed… it’s completely understandable that he doesn’t have the strength to climb out of the horrible trench his life has dug for him.
If that wasn’t enough second hand depression, the nurse and I joined the wife and her sister in the dining room to talk. The nurse told the wife how the pt admitted to wanting to hurt himself. She replied, “Oh, I know. And I don’t blame him. If I could help him pull the plug I would. If it weren’t illegal, I’d pay whatever I’d have to let him stop suffering.” It was after saying this that she let her guard down. Tears filled her eyes as she held her breath. She excused herself and as the nurse put her hand on hers, assured us it would pass. “Just give me a minute,” she said. She squeezed her eyes tight and held her fist to her mouth. All of a sudden, she opened her eyes, dried her tears, took one deep breath, and exhaled loudly. “Ok, see? It passed,” she said with a smile. “It comes and goes, comes and goes.” I’m hoping that she was withholding her tears due to our company, and that if she cries when everyone’s gone, that she really cries and allows herself that catharsis of emotion. I wish I would’ve said something to her… me hoping that she’ll get through this doesn’t do much help…
Laughter was the true medicine for this family. The sisters talked about their youth, and all the good times they had, and how they would always be laughing hysterically… they even joked about how cute the man who brings the medical supplies is… she said how she wanted to call him and tell him the bed he brought today broke, just so he’d come back. I haven’t figured out if humor is a lasting way to deal with something as intense as death, but for now, it seems to be working, at least for them.
Ok, so I just wrote a book on the one pt I saw who doesn’t even want music therapy… you’ll never know who or what will strike you; who will make you think…
Pt #4 of the day was at a SNF about 30 miles away, so that’s about an hour in California driving time. After driving in circles in a parking lot for 15 minutes thanks to my GPS saying “turn left in 250 ft and you have reached your destination.” With a little help from the nurse, I finally navigated my way through empty parking lots and back streets to the facility. The pt was a new admission, and sadly, actively dying. Her daughter was there with her, and greeted us in the hallway. When I introduced myself as the music therapy intern, she told me that she plays music for her mother. In the room, she had an old cassette player sitting on the nightstand. Playing was a tape recording of her brother (the pt’s son) singing Christian church hymns in their native language. He is a pastor in the town I play softball in. What better for the pt to be listening to during her last hours than the sound of her own son singing church hymns!
I asked the daughter how she was doing, and she said she was fine. She told me how she lived with her mother for 12 years (!) until her mother moved to a nursing home about six months ago. This seems to be the case for a lot of our pts… a family member ends up devoting their entire life to caring for the sick pt, and now that the time has come for the pt to die, what is the family member to do? It’s almost comparable to a veteran’s situation… you send a soldier into war where he/she wakes up every day with certain tasks and responsibilities… he/she eats, drinks, and breathes the war… then you throw him/her back into society and expect them to pick up where they had left off… these people devout years and years to caring for their loved on 24/7/365… being a caretaker becomes part of their life and part of their identity… when the loved one dies, that part of their self is taken away, and it can be a long and difficult journey refilling that void…
As I digress… despite what I delved into above, the pt’s daughter did not strike me as someone who would be dealing with this. Even though she took care of her mother for 12, almost 13, years, she told me that she knew during the 6 months she spent at the nursing home that this would happen. She seemed prepared and accepting of the situation. From the music and the fact that her brother is a pastor, I can make a guess that she finds the strength and comfort she needs by knowing her mother will be with God in Heaven. After watching a loved one’s health decline, I’m sure the belief in knowing that your loved one will be soon be in a blissful place, where everything is perfect, and life is pain-free, can be quite a comforting thing.
As the nurse and I were on our way out, the MT was on her way in. I told her how the daughter was playing her brother’s tape of Christian music for her, and the MT reiterated my feelings, that what could be better than that! Can’t beat a recording of the pt’s son singing spiritual hymns!
After a quick catch-up conversation between the MT, RN, and myself, we again parted and went our separate ways. After the hour drive home through jolly ‘ol Cali traffic, I made it home, tired as can be, and starving from my lack of lunch!
And so I leave you for today… as you can see, it was a busy, busy day, with lots to think about…
Alright, a 1hr respite then off to another fun filled softball adventure in the always recreational Irvine, CA! Go team!