Grandma – grief from a patient side
Grandma is officially on hospice, and was sent home to Aunt Julie's house, where she has her own little suite that they recently built for her. She has round the clock caregivers (not sure how that is being done financially/insurance wise etc, but yay). She got transferred via ambulance from the SNF (prounounced SNIFF, skilled nursing facility) earlier today. She has a hospital bed set up in the corner of the room towards the TV and window looking outside. She has a Hoyer lift to mechanically lift her/move her in the suite too. I last saw her last Sunday in the SNF, and while she didn't look too hot then, she has declined significantly even since then. Her eyes were open and she would occasionally track or focus on objects, but her face was slack into a permanent frown, and her eyes were mostly vacant. She could occasionally rouse enough to say a word or two, but for the most part, was completely silent.
When I first got there, I immediately noticed her left hand (which she had recently broken) was starting to clench, I think mostly due to her continuously having a protective reaction, not so much neurologically, but I got her a rolled up washcloth and put it in her left hand, which was the right thing to do as she wasn't using the hand at all and it stayed within her hand all evening. We're not worried about contractures or anything (her left arm is really stiff) because we don't think she will be around long enough for it to matter. Honestly, at this point, it could be hours to days. I think Grandma has already left the building, so to speak, for the most part, and her body needs to catch up to her mind's desire to move on. My true hope for her is that she passes soon and peacefully, before the pain catches up to her too much.
It was nice to see her occasionally rouse enough to speak a word or two, and when I told her I'd see her tomorrow, for example, she said “Thank you, darlin'”. There were a ton of family members at Aunt Julie's (that's what happens when you have such a huuuuge family), and many, many visitors to Grandma's bedside. She seemed to be more or less taking it all in. Right around dinner time the suite emptied out for people to get food, and it was just me, Aunt Julie, and Aunt Debbie. We put a rosary on her chest (I also tied one around her hospital bed railing), and put on a recording of the rosary. Grandma is very, very, very super super Catholic. It was so powerful, to listen to the repetitive chants of the rosary, and to hold grandma's hands and sit with her. It was such a beautiful and painful experience all at once. We sat there in silence, all holding onto her hands, watching her, absorbing the peace of the rosary. The tears were streaming down our faces. I struggled to not completely lose it as I wanted to enjoy the moment of love and peace with her. Her face stayed expressionless, but her eyes lingered on our faces. it was such a lovely, cherishing time we all spent together, in our own little world of love and grief intertwined.
It was interesting to watch all the different personalities at play while interacting with Grandma. Some family members had an instinctive ability to know how to act around her, while others were clearly uncomfortable. It's disconcerting to have your beloved family member not be able to respond to you. I wish people would understand that it's not about a give-and-take relationship at that point – it's not like you are throwing a ball and are then at a loss because it's not thrown back to you to volley again. At that point, it's about being in the moment and being present for that person in a spiritual sense – you can just “be”. There doesn't have to be an action. The simple act of holding a hand, or gently touching a cheek, or even just calmly sitting with them, is quite possibly more than enough. Hearing is often one of the last senses to go, so you can always just chat a little and tell them things. For example, I told Grandma about seeing a pig on the beach yesterday. I didn't need a response or acknowledgement.
From an occupational therapy standpoint, I felt a little helpless in the arena of physicality because that arena is really not my forte in terms of positioning, etc. I've had enough experience to have SOME understanding of what is helpful, but not enough to feel confident about physical issues. From an occupational therapy standpoint mentally, however, it has certainly been helpful to have been around a lot of sick people, as it has helped prepare me to not be uncomfortable or scared. Too bad it hasn't helped me with the being sad part…
I got to feed Grandma a tiny, tiny bit of ice cream tonight. She only tolerated small sips and probably had a total of a 1/3 small scoop total. So ironic that she has always LOVED sweets and ice cream and now that we would give her all she wants, she doesn't even want it, which is typical at end-stages.
I've always had a special relationship with my grandmother, and it's so incredibly hard to watch her slip away. While I'm not particularly religious (ok, not at all), I do take solace in the idea that soon she will be able to join Grandpa in heaven, and her suffering will end. We will grieve for her, but we will rest in peace knowing she is finally Home.