A few years before she died of breast cancer at 52, the mezzo soprano Lorraine Hunt Lieberson sang Bach's Cantata "Ich habe genug," ("I have enough"). For the performance Lieberson dressed in a hospital gown, with tubes emerging from her body, signifying a sick woman's readiness to die.
I have a recording of that performance, and I've been listening to it these days, along with other music by Bach, as the news about my mother oscillates between "not so bad" and "definitely worse."
I hear from my sister, who is taking care of our mother, almost every night. In between the phone calls my mind endlessly replays the latest information, weighs alternatives, imagines outcomes. It seems that no medication exists that will relieve my mother's post-surgical pain without knocking her out for the better part of a day. But sleep is treacherous, for while she sleeps she is immobile, and immobility brings the danger of stroke, pneumonia, and a host of other ills.
Also, while she sleeps she is not doing physical therapy, which means that she is not improving, which means--and this is what my sister and I dread--that she will not be allowed to stay in the rehab facility where she is presently receiving wonderful care. She will have to go to a nursing home.
The doctor, who seems kind as well as wise, has recommended that my mother receive only palliative care. But how does "palliative" translate when blood sugar levels rise sky high? And does "palliative" mean that we abandon all attempts to keep her moving? Does it mean that she is constantly on pain meds, i.e., unconscious? Then there is the matter of my mother's mind, which runs the full gamut of dementia stages: unable to make any sense on some days, "almost herself" on others.
The doctor tells us that it is time to begin thinking about hospice.
How does one "do" end of life? My sister and I are woefully inexperienced. We've never done this before. We have good will, but no skills.
There is something about the music of Bach that makes me feel that he knew everything there is to know about being human, especially the stuff that cannot be put into words. So I listen to Bach these days, and wait.
My Great Cities of the World
6 days ago
My family has had amazing experiences with hospice. We've only been involved for a matter of days in each case, though, nothing that dragged on indefinitely. But it wasn't anything like what we envisioned.
ReplyDeleteLali, I am thinking of you. Good will is all that you need right now, it is all that you can expect to have. My dad spent time in a hospice both after surgery, and then for a week or so before his death. They helped him die in dignity and not in pain, and provided loving support for us. I'm not saying your mother is ready for this, I'm just saying it can be a wonderful option when you need it.
ReplyDeleteBridgett and Mali, thank you. I understand that hospice is a wonderful organization and that lots of people are grateful for its existence. It is comforting to know that we have it as an option.
ReplyDeleteLali, I worked for hospice for 5 years and cannot say enough good things about their care. Hospices are experts in pain management and focus on providing as much living as possible. Additionally, they will provide support for you, your sister and the rest of the family. There is so much hope in hospice - hope that your mother will not be in pain, hope that you and your family can understand what is happening, hope for peace of mind and body. I will be thinking of you and sending much love and good energy.
ReplyDeleteAmy, thanks. This is so consoling and reassuring.
ReplyDeleteLali:
ReplyDeleteWe had wonderful hospice care for my mother, who died two years ago. They exist for the living as well as the dying, and I am so grateful for their expertise and kindness. As for your inexperience, most of us are inexperienced, and hospice knows that and fills in gaps. The nurse, doctor and others became a wonderful support for all the family. At the time I didn't know how I would make it through but they showed me how to have the courage to see the beauty of the experience . My thoughts and love to you and your family during this time.
Jaimie, this is amazing--all these testimonials about hospice. It really does make one feel less alone at a time like this. Thank you.
ReplyDeletehospice was of minimal use to use when my father was dying. it all depends on what the insurance company will pay for, and in his case it was three visits a week where they bathed him, brushed his teeth, and that was about it.
ReplyDeletewe paid out of pocket for a home health aide to be with him at night, and that made a huge difference to all of us. these workers are doing the lord's work, that's for sure.
this all might be harder for you, being far away, than for your sister. i'm so sorry all of this is happening and i wish it were easier.
Laurie, three visits a week must have felt like the merest drop in the bucket. It's the night-after-night care that exhausts people. I'm glad to were able to get help with that.
ReplyDeleteAnd you're right, being far away brings its own hardships.
Lali, I'm so glad you are writing about this, and I'm glad for your reader's responses. These are things that need to be talked about. Thank you.
ReplyDelete