104. Happiness Abounds
Flashbacks
There is a reason for these reminders.
In Blog 68, Choosing a Place to Die I wrote: I’ve turned a corner and it’s time to decide where I will be when I die. As she does every visit, Nurse M waved at me through the glass of my front storm door and said what she always says upon entry, “So how are you doing?”
“I’m dying.” My response was curt and accompanied by an immediate well of tears.
Her medical backpack found the floor with a bit of a thud, her eyes found mine, her ass found her seat. She leaned in — quickly assessed the immediacy of that comment and said, “Yes, but not this minute. So, tell me what’s going on.”
Tears flowed from my eyes, “I’ve been living with a terminal illness. I am dying from it now. I can feel it.”
She nodded and left me to fill the silence. So I did. “My spine is weakening. And I know the biggest worry is a catastrophic event, but for the first time, I feel like the cancer has a really strong hold on me, and I’m not physically able to keep up with its pace. I’m no longer able to go toe to toe. I’m no longer able to push back as hard as the cancer is pushing forward.”
“Tell me what’s happening.”
“Everything is getting harder. Getting from my perch to the BR is more of an effort. Making it through a sponge bath takes so much out of me. I have to break the process down into little bits and rest in between. The exertion causes heavy breathing and it takes some time before everything regulates itself. And then there’s the spinal weakening. I don’t know anything for certain, but I feel like I’m behind the eight-ball on that process.”
Silence.
“Sunday marks my sixth month. I think I might get another month.”
Nurse M leaned in, all-in, and said, “You know your body and your assessments are the most important ones. You’ve identified obvious signs that things are happening — changing. That’s part of the story, but let’s look at a few other things. Your vitals are strong. Your voice is strong. You are still eating and drinking and sleeping and managing your day to day personal care and you’re still blogging and your pain is being managed. Those are also parts of the story.”
“And those are the things that you watch?”
“Yes.”
“And when those things start to change, we’ll have more of the story?”
“Yes.”
Silence. Lots of silence.
“I think we need to have The Talk. I think I need to make some plans about where I’m going to die.”
“Okay.”
That was the beginning of what’s called a slow decline.
It made me do the work of decision-making.
Remember this?
“I really don’t want Tim and the girls ‘caring’ for me. I’d rather have them sitting by my bedside holding my hand and telling me they love me. I don’t want them doing the ‘other stuff’ — for a lot of reasons, but one concern I have is the state of my spine and the fragility of my bones. God forbid there’s a break while they’re moving me, or whatever — I don’t want them carrying that shit fest with them for the rest of their lives.”
“Okay, let me explain what services you’ll have from our agency. As things progress, I’ll up the number of visits I make each week and let you know when it’s time for bedcare. You can do that at a facility or you can do that at home. If you stay here, I will visit you Monday through Friday and spend an hour or so with you, and our weekend person will visit on those days. Also, one of our healthcare aides will visit you seven days a week and take care of your personal needs.”
“I want a catheter.”
“Okay.”
“And the other hours?”
“Tim and the girls can be trained to do certain things, but if you or they don’t want to be part of your care team, there are agencies who have people who can come in. Usually, they send someone for an eight-hour shift.”
“Like an overnight shift?”
“Usually.”
“Once I take to the bed, how long before I die?”
“Every passing is different, but two weeks is a good benchmark. When you’re discussing this with your family, start with that timeframe. If they decide to be a resource, have them consider whether they can handle that length of time helping with your needs, that includes administering pain meds. It’s going to be a very emotional and difficult time for them.”
Silence.
“And if I decide to go to a facility? Let’s face it, there’s a lot to be said for being in a hospital setting where there are medical professionals who will take care of me. And Tim and the girls and Mom and Marchrie and family and friends could skip the physical care and just sit with me.”
Sigh. Hers. A lean-in. Hers.
“Let me tell you what the current situation is with visitation at the two facilities you and Tim selected when we first started discussing this. My understanding is the small facility with private rooms is allowing visitation for two people from 10 AM to 6 PM. Currently, there are no overnights, and since that facility isn’t part of our hospice program, I wouldn’t be part of your nursing team.”
“New people,” I sighed.
“Yes. As for our facility. There are very few private rooms, so you are most likely to have a roommate.”
Audible groan.
“The visitation schedule is assessed and modified daily because of the uptick in Covid cases.”
My heart sank. I’m not sure I said any of this outloud, but I thought it. I do not want to die alone and I sure as hell don’t want to die with a stranger watching me. Nor do I want to watch someone else’s death. Decision made. I will die in my home — in the company of people who own my heart.
That was then — this is now!
There were lots of moving pieces involved in changing my mind about where I will draw my last breath. First and foremost: the lessening of Covid restrictions at the facility I’ve always wanted to go to reignited my desire to die there. I hope they will stay as flexible as they are right now, but I fully accept that things may change because let’s face it, nothing is perfect. If I haven’t learned that lesson by now, I fear I may be a lost cause. When it’s time for me to leave this world, I pray I will be at Rose Monahan Hospice Residence.
The Rose Monahan Hospice Home in Worcester is the first hospice residence in Central Massachusetts…The well-equipped house is filled with staff and volunteers who tailor care plans specific to each patient. Medical, emotional, practical, and spiritual (if needed) goals are put into consideration to design unique care plans for each resident. Volunteers are essential to the care provided. They offer companionship, support, meal preparation and general help with the home and property. We also provide a bereavement support program for loved ones up to one year after a loss.
Nurses are available around the clock to provide general in-patient and residential hospice care. The two-level home, complete with an elevator, offers ample space for quiet family time or private reflection in cozy nooks. For socializing with others, larger common areas include a dining room, sun dappled living room, sundeck, shaded patio and a garden sitting area adjacent to the water.
(Narrative from the facility’s website).
Oh, did I mention that the facility has ten private bedrooms, each complemented by a patio or deck overlooking Coes Pond. Yes, there is a place for me to die that is located in 01603, it has private rooms, and around the clock nursing care, and it is set on a beautiful piece of land surrounding the neighborhood pond in Columbus Park. Imagine how perfect this setting is for someone who loves a waterway as much as I do.
This is my choice. I hope it comes to be.
As I said a few sentences ago, I fully accept that nothing is perfect. This clangs loudly in this way: I won’t be able to have Nurse M as my caregiver during my last days. When it comes time for me to climb upon my deathbed, I will be under the care of Rose Monahan. Nurse M and I talked at great length about her role from now until then. I sobbed when I told her how sad I was that she wouldn’t be with me at the end. She acknowledged her own feelings then said, “This is about you and what is best for you.”
I can’t begin to count how many times she has said that —
or how deeply she means that.
Rose Monahan is where I want and need to be. I am already full of peaceful expectation and want this for me and for the ones I love so much. Tim and the girls are all-in on this decision because I want it, but also because they see it as a perfect setting for me. In the end, it’s all going to come down to timing — will there be a bed available when I need one? None of us know the answer to that.
Long ago I went back to the prayer I’ve offered up for years.
“Dear Lord,
Thank you for blessing my loved ones;
I pray that you continue to keep them healthy and safe.
Amen.”
I no longer feel the need to ask God for anything beyond that sincere prayer. I have received a multitude of blessings during these past ten months. In my quiet hours I feel His presence and gratefully acknowledge His gift of time. I did so many wonderful things with that time — the most important was deepening bonds with my loved ones and connecting with so many of you.
When my days end I really hope that He or one of His assistants will meet me at Rose Monahan and bring me Home. Not asking, just saying.
God is good. God is great. And I love Him.
Rose Monahan