Emma’s apartment was small. I had furniture and belongings in storage. If I were going to stay, we’d need a bigger place. So, we looked for something to buy.
Ultimately, we found a charming 1894 Victorian in the historic district of a central Delaware town. We bought the house and in August 2002 moved in.
Saturday, December 31, 2011: Gaggles of Strangers –Emma is residing in the hospital bed in our living room. We have hospice now. Since Christmas, Emma has become agitated. Her doctor recommends continuous care, a temporary service limited to the duration needed. Our beloved hospice nurse, Tess, sets it up for the weekend, while she has the days off. Ron, a loving nurse sits with Emma all day. He holds her hand, talks to her and sings to her. At night, the team from the River Styx arrives. Upstairs in bed, I hear them coming and going, conversing in stage whispers. Not following my specific orders, they take control of our house. I am ready to hand them the monthly mortgage bill for payment.
Sunday, January 1: Strangling Gaggles: Emma has become responsive this morning. She has taken her medications and eaten her breakfast. She is calm, resting. In the afternoon a substitute Tess arrives. The nurse does not introduce herself. “Who are you?” I ask. She tells me her name and says she has been here before. “Oh, I’m sorry,” I say. “So many nurses have been through here I don’t remember all their names. “Well, you have your team and you have me visiting,” she replies. “I’m not that stupid,” I counter. She splutters to herself. She wants to cancel the continuous care for Monday. “Tess told me Friday and an administrator confirmed yesterday that Ron would be here through Monday,” I say.
“Well, I’m discontinuing it,” she says.
I tell her I have made plans for Monday. I was going to visit a friend to get some mustard greens, spinach and radishes from their garden – where else could I find fresh local greens in winter in Delaware? I was so excited to be having a rare day out – we’d have lunch with another friend, network about new business marketing ideas, and in the end I’d eat fresh, crisp greens that didn’t taste like they’d resided in the back of a refrigerator for a month.
Nevertheless, this substitute Tess, with the weekend administrators, arbitrarily shredded my plans, overriding Tess and Emma’s doctor’s orders that Tess would make the evaluation Monday whether to cancel the continuous care.
“Who will watch my mother tomorrow morning?” I ask her.
“Get someone to sit with her,” she says flatly. I, the sole caregiver, with no family in the area, have no one to call upon, and Emma’s and my income is such that I can barely afford heating oil this winter. “We’re not a babysitting service,” she adds
“Will you do it?” I ask her.
“I? Why should I do it?” she replies.
“Well, who would you suggest?” I ask.
“Pay a private nursing agency.”
“Are you buying?” I ask.
“Me? Why should I buy?”
I am ushering her out the door.
I grab the phone and sit outside on my front porch. Tears well in my eyes. Now what? I ask myself. Now what?
The phone rings. The voice is my best friend of 40 years, the one who knows me best, from Southern California. “I sensed that all was not well with you and you needed support,” she says. She is caregiver for her mother who also has dementia. Our experiences often match. As happens these days, I am about to step over the edge and someone catches me; this time it is she.
Although, this thought did flit through my mind:
I say to my California friend, “It’s a good thing I don’t have a shotgun, because had I blown that nurse’s head off, it would have made an awful mess all over the rug.”
“Yes, and you would have had to clean it up,” she says.
Then I call my friend with the garden of greens and the deep, raspy voice, to tell her I won’t be able to make it Monday. I relate the shotgun story about having the mess to clean up.
“Ya gotta have a drop cloth,” she says.
Good on your friend for her sense of humour Samantha… I had to smile after feeling the angst and wrench reading this post Samantha. I guess there’re nurses and nurses. Those who are good are very very good and those who are bad are horrid. The horrid ones stand out in such sharp contrast to those who are loving and kind. Mind you I guess they would stand out sort of on their own and we can just wonder why?
Yes, Susan, angst ridden as it often was, in the end we could laugh. That is a blessing and a testimonial to what great help I had in the last couple years, and to my friends.
Nurses are extraordinary, most of them, thankfully. They often can tell you more than a doctor will, and they are so conscientious and compassionate. I could never do as a profession what they do. Thankfully there were only a couple horrid ones.
You had many awful experiences, for sure. As I read about Tess’ substitute, I wanted to reach through time and space and slap her silly. I can understand putting aside our spirituality and grabbing the drop cloth. That immediate anger that rolls us into our ninja clothes. I hope you reported her, while breathlessly sobbing your eyes out. It’s so painful to watch those we love, die in our presence. To have a so called professional behave, as she did, is heartless. Know you are and have been loved for your selfless efforts. Written beautifully!
Marsha, thank you for your kind compliment on my writing.
As for the nurse, her attitude could have been more compassionate, for sure. I did report her. As it turned out, the doctor told me that those long-time hospice nurses, and he, did not know that the Medicare regulations had recently changed with the implementation of Obama Care, and that included continuous care. So, the mean nurse was up to date on the new regulations and that’s why she arbitrarily discontinued the continuous care without consulting Tess or the doctor, both of whom were not up on the new regs.
Nevertheless, I so often ran up against healthcare aides not showing up or changing their plans due to patient emergencies, that I could rarely make plans of my own. There are hospice volunteers who will sit with the patient, but they are required not to do anything but sit — no bathroom help and the like. So, I really needed someone there who was capable of helping my mother in such situations, and that was usually me.
Yes, I learned to wear my ninja outfit. 🙂
I am amazed at what you went through. Even more shocking is the attitude of the nurse. With her attitude, you don’t have to wonder why some people are afraid to leave their loved ones in the care of Personal Care homes.
It is sad that love and respect for others has grown so cold.
Yes, all of that is true, Patricia. But I must say, and I will write an A-Z post about it, in the end — and it took my years, obviously — we got amazing help through our hospice team — the nurse, the social worker, the chaplain (all women), the music therapist (something you’d be great at), and the doctor. These are extraordinary people, and the nurse and social worker/bereavement counselor remain my friends. All of them would sit and listen patiently for an hour to my rants and we’d end up having a lot of laughs together. My mother and I were so fortunate. And, of course, there was Daphne (not from hospice) and three other aides, who were wonderful and remain my friends; but, in between — as our chaplain told me, I had to learn to be the Lion at the Gate. And then I met you Roos. So, you never know — the Child has to follow the path to reach the blissful destination/outcome.