One of RNs told the MT this morning that the 56yo patient is actively dying. I asked the MT if I could go see the family as well. Even though I do learn a lot from all our routine visits, my experiences with the actively dying patients is where I really gain some experiences I'm sure to never forget.
Our first visit consisted of playing guitar with the 12yr old son "David", and jamming with the patient as he played harmonica (and extremely well I might add!) After stopping at the office for some supplies for the patient, I drove to the patient's home. David answered the door and let me in. By instinct, I just asked "How are you?" to which he replied, "I'm alright." He just stared at the ground and spoke in a low tone. Duh, Gina. What a stupid question. The kid is 12 years old and his dad is dying. How do you think he is?? Already I made the wrong move.
The MT had already been there for almost an hour. She was sitting on the bed (the patient was now in a hospital bed) playing guitar as the wife sat next to her husband/the patient, stroking his face and lightly crying. David was in his room playing video games and avoiding being in the room with his father. I knocked on his door and asked him if he wanted to go for a walk or to just talk. He replied simply, "No," without even turning around to face me. I conceded and went back to the patient's room to sit with the MT. She sang a beautiful rendition of "In My Life" by the Beatles. I was going to jump in with some harmonies, but honestly, I just enjoyed listening to her sing!
I waited a bit longer, and then asked the MT if I could try and teach David a new song. Once I got the 'okay', I went back for my second attempt in engaging him in music (or in anything productive...) I wondered into the hallway and talked to the patient's sister-in-law. David came out of his room and asked her if he could walk to the corner store to rent a movie. I jumped at the opportunity and offered to walk with him. At first, we were both pretty silent. I tried getting him to talk about what was going on and how he felt. He said he didn't like to be in the room with his father because of a recent experience. His great-grandmother had passed away earlier this year, and he would spend a lot of time with her at her bedside, up until the moment she died. He explained how now when he thinks of her, he doesn't recall fond memories of times they spent together, but rather, of just how she looked laying in bed before she died. I interpreted him to mean that he didn't want his most prominent memory of his father to be of him laying comatose in bed, which is understandable. But, I also think if you are blessed with being able to know that someone is about to go before it actually happens, then you should take full advantage and make that time as meaningful as possible. I worried that David would regret spending his last few hours/days with his father alive locked up in his room playing video games...
When we arrived at the corner store, David browsed through the movie titles in the Red Box. I made some typical dumbfounded "Gina"-comments about what a neat contraption a Red Box is. (I'm still amazed every time when the red space machine magically produces the DVD you selected out of nowhere...) I got a few chuckles out of him, which I charted as tremendous project! Best way to break the Awkward Wall --> humor. He picked the movie Men Who Stare at Goats because he and his father were supposed to go see it together. COTI!!! (my new acronym for "crying on the inside"! Watch out world, it'll catch on and be the new "lol".) The things he said today just ripped me apart. No kid should ever have to go through this! It's not fair! Forgot to mention. On the way over, he told me how he and his dad were supposed to go to the boy scout Jamboree this summer over on the East coast (who knew kids all the way from Cali went to Jamboree!) It was the first year he was going to get go, and now, his dad can't take him (COTI again!!). I told him that just means he's going to have to have twice as much fun -- fun enough for him and his dad. Voila! He cracked a smile :)
On our way back to the house, I offered him some insight that I pulled from my "I might have made this up, but it sounds good" archives. I'm not implying that the advice I give people is a bunch of B.S., but just that I'm never 100% certain that it's the best advice to be giving... I know... I'm always questioning myself, the things I do, and the words I say... but hey, how are you supposed to improve upon yourself if you never question things? Anyway, I told him that there is a difference between distracting yourself, and keeping your mind busy. Playing video games is a way to distract yourself, but there are other ways to make this difficult but very important time easier to deal with. I suggested he do something that will not only keep his mind busy, but will be focused on his dad. I asked if he'd let me teach him Green Day's "Good Riddance" on guitar. I told him we could perform it for him... One last big performance for his dad where Dad gets to be the VIP guest... a special concert just for him... I also told him that even though his dad's eyes may be closed, he can still hear us, and that's why the MT and I play music -- but also that hearing his son play music will be far more meaningful than music from the MT or I. Well, he agreed! Hooray!
By the time we reached the house, David and I were laughing and engaging in normal conversation. Awkward Wall defeated! David's mood changed from closed off and disengaged, to laughing, having fun, and being a total kid. He was joking around, talking to all the family and friends coming to see his dad, singing, helping us write his own lyrics to the song... it got to the point where he was border-line having too much fun! if that's even possible... I hope you get what I mean. [Side note: you should have seen the picture on his wall by his bed. It was a huge blown up picture of him and his father getting baptized. They were emerging from this giant pool soaking wet with big smiles on their faces -- most epic baptism picture I've ever seen.]
Performance time had come. We went into the patient's room, guitars in hand. David kicked everyone out except for his aunt, mom, and grandmother. I guess he was getting shy again. His grandmother asked if she could film the song, but he refused. We performed the song, with David singing right along with us. His mother cried and was really touched by it. It was the exact moment and reaction I was going for -- I can't believe it all actually worked out! But boy am I glad it did :)
When I first began rehearsing the song with David, I gave him the option of re-writing the lyrics to Green Day, or writing lyrics to the chord progression he had made up himself and played for us during our last visit. He picked just doing the Green Day song hands down. When the MT and I were leaving, he told me that next time I come over, we can write words to his song -- YAY!! I made him promise we'd actually do it -- we even shook hands on it. I was so happy to hear him say that. It was like his way of showing me trust and respect. Musicians don't share their own personal music with just anyone!
It's 8:45pm now and I haven't heard anything about the patient... so far he is still hanging on, which means another visit might be an option for tomorrow... we'll have to wait and see...
When the MT and I stopped for lunch, one of our nurses sent out an email stating that our Scottish patient is depressed and requested a visit from the psych/soc team. So yes, I went to visit her for the fourth time in 10 days. I don't mind visiting her. It can be frustrating, but I definitely am far from minding. She was highly disoriented today. She kept asking for clear water... then asked for clean water... "They gave me clear water, but I need clean water." "Yes, clean water. But I need clear water." "Yes I need clean water." I was getting so confused. Clean-clear-clear-clean-- what are you talking about, lady??? The most disturbing part of my visit was our next conversation: (I tried to remember how it went best I could...)
Pt: "My mother died this morning. About six hours ago."
G: "Oh I'm so sorry to hear that!"
Pt: "I died too. They sent my body to Scotland. My husband died too.
I love him so much. Married 44 years. He died 6 years ago."
G: "I see."
Pt: "They sent my body to Scotland. They sent the wrong body. They knew because
of the ring. This gold ring. It's my wedding ring. I love my husband."
G: "It's a beautiful ring. Must be pretty special.
Pt: "They sent the body to Scotland. I died. It was the wrong body. They saw the ring
so they sent the body back to America. I really love Scotland. It was my home."
G: "What a shame! They sent you all the way to Scotland! It's pretty far away!"
Pt: "Oh yes, about 600 miles or so. (I'm seeing a theme of 6's...)
There was a body underneath the body. They were just confused. I want them
to send my body to Scotland. With the flag. I received my husband's
flag when he died. I love that flag. It's very dear to me."
G: "Oh, how nice they gave you his flag."
Pt: "My mother just died. I'm so fearful. This room... can I stay with
you tonight?"
G: "Don't be scared. You'll be safe here."
Pt: "No, I can't stay here. I'm too frightened. Can I please stay with
you? Please?"
G: "I can't sweetie. I rent a room and I'm not aloud guests."
Pt: "Oh, please? I don't need a bed. I'll just sleep on the couch."
G: smiling "I don't even have a couch!"
Pt: "That's alright. I'll sleep in a chair. I just can't stay here. I'm scared."
G: "There's lots of people here to protect you. You'll be just fine, don't worry."
Oh gosh, I felt just awful! Her eyes were shifting around all crazy paranoid like. She wasn't kidding--she really was scared! I tried to shift the focus back to the music. We sang "My Bonnie Lies Over the Ocean". She likes that song. I always change the words though. "Last night as I lay on my pillow, last night as I lay on my bed, last night as I lay on my pillow, I dreamt that my Bonnie had said... Bring back, bring back etc. etc." (The song really goes: "I dreamt that my Bonnie was dead"... yeah, not the best lyrics to sing to people on hospice...)
After our team meeting, the MT and I went to visit our little boy up north. It's been difficult getting him to focus during our visits. He's constantly wanting to show us a new toy or eat snacks. BUT, he's super adorable and hard not to love. The MT tried to talk to him today about his dad/our patient. She asked, "So what's been going on with your dad lately?" All he replied was, "He's a little sick." It's terrible. The poor kid has no clue what's going on with his dad or the seriousness of the situation. The patient had about a dozen seizures this past weekend, and his son thinks he's "a little sick". Ugh, COTI yet again!
So yeah... that was my day... It's 9:00pm and I'm just finishing this blog... I was supposed to work hard core on my research paper tonight! Looks like that's not really going to happen... Well, procrastination is my style after all so intense paper-writing session this weekend it is!
Good day and good night!
G: "Oh I'm so sorry to hear that!"
Pt: "I died too. They sent my body to Scotland. My husband died too.
I love him so much. Married 44 years. He died 6 years ago."
G: "I see."
Pt: "They sent my body to Scotland. They sent the wrong body. They knew because
of the ring. This gold ring. It's my wedding ring. I love my husband."
G: "It's a beautiful ring. Must be pretty special.
Pt: "They sent the body to Scotland. I died. It was the wrong body. They saw the ring
so they sent the body back to America. I really love Scotland. It was my home."
G: "What a shame! They sent you all the way to Scotland! It's pretty far away!"
Pt: "Oh yes, about 600 miles or so. (I'm seeing a theme of 6's...)
There was a body underneath the body. They were just confused. I want them
to send my body to Scotland. With the flag. I received my husband's
flag when he died. I love that flag. It's very dear to me."
G: "Oh, how nice they gave you his flag."
Pt: "My mother just died. I'm so fearful. This room... can I stay with
you tonight?"
G: "Don't be scared. You'll be safe here."
Pt: "No, I can't stay here. I'm too frightened. Can I please stay with
you? Please?"
G: "I can't sweetie. I rent a room and I'm not aloud guests."
Pt: "Oh, please? I don't need a bed. I'll just sleep on the couch."
G: smiling "I don't even have a couch!"
Pt: "That's alright. I'll sleep in a chair. I just can't stay here. I'm scared."
G: "There's lots of people here to protect you. You'll be just fine, don't worry."
Oh gosh, I felt just awful! Her eyes were shifting around all crazy paranoid like. She wasn't kidding--she really was scared! I tried to shift the focus back to the music. We sang "My Bonnie Lies Over the Ocean". She likes that song. I always change the words though. "Last night as I lay on my pillow, last night as I lay on my bed, last night as I lay on my pillow, I dreamt that my Bonnie had said... Bring back, bring back etc. etc." (The song really goes: "I dreamt that my Bonnie was dead"... yeah, not the best lyrics to sing to people on hospice...)
After our team meeting, the MT and I went to visit our little boy up north. It's been difficult getting him to focus during our visits. He's constantly wanting to show us a new toy or eat snacks. BUT, he's super adorable and hard not to love. The MT tried to talk to him today about his dad/our patient. She asked, "So what's been going on with your dad lately?" All he replied was, "He's a little sick." It's terrible. The poor kid has no clue what's going on with his dad or the seriousness of the situation. The patient had about a dozen seizures this past weekend, and his son thinks he's "a little sick". Ugh, COTI yet again!
So yeah... that was my day... It's 9:00pm and I'm just finishing this blog... I was supposed to work hard core on my research paper tonight! Looks like that's not really going to happen... Well, procrastination is my style after all so intense paper-writing session this weekend it is!
Good day and good night!
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