It's as if those driving by can tell it's a family sitting vigil with a dying loved one. You can't miss the hospice company's vehicles in the driveway, the constant coming and going of nurses, ministers and visitors. There's equipment going in and out of the house and no one has seen my sister leave her home hunkered down in her little Hyundai like she used to do.
Life has stood still for us, but still goes on for the rest of the world.
It's a stark reminder that life really does go on.
All is quiet for Priscilla's last morning
After a relatively quiet night, despite the death rattle, hugs and difficulty in breathing the evening before, I gave my sister some morphine at 4 a.m., and sent the overnight caregiver home.
I curled up in a chair facing my sister's bed and tried to snooze. The old adage of being a new mother and sleeping when your child sleeps is one I follow here. It's the only way I can maintain some rest.
My sister is quiet at last. She's not moving around her bed thrashing restlessly anymore and her breath is labored, but she's otherwise quiet.
She still won't allow anything to touch her legs or feet, so they aren't covered and are freezing cold, but she doesn't seem to mind.
Her fingers and toes are blue and her legs are becoming mottled. I know that this is part of the end process.
Around 8 a.m., my husband goes out and gets us some breakfast. We eat quietly at the desk in my sister's room, watching her chest rise and fall. I now only leave her long enough for bathroom breaks. I know we're down to the last hours. No one has to tell me that.
We decide to go out for a fast food lunch when the CNA arrives late that morning. It's her usual day. We both need an hour out of the house, just to breathe fresh air.
The CNA arrives around 11:30. I inform her that Pris can no longer leave the bed so she'll have to bathe her in bed. I fill her in on everything that had occurred since Friday – the terminal restlessness, the constant bowel movements, the lack of urination and Julie's behavior/lack of caring.
The last four hours of care begins
The CNA, takes one look at my sister, concentrating on her feet, toes and legs and asks me how long Pris has had the mottling and blueness.
"Since yesterday," I reply.
"Have you called Julie," she asks, somewhat incredulously.
"No," I said firmly, "why would I? That woman has does nothing but botch up my sister's care."
The CNA began to explain to me that the mottling was up above Priscilla's knees and means she's in the last stage of life and has - most likely - hours to live. She says she is going to call Julie right away.
It's OK, I understand it's her job and she has to report the condition of her patient. I also tell her that Julie was here just the previous morning and knew of all of the mottling and the failure to urinate for the last three days and did nothing but announce my sister still had a week or more to go.
Remember that just three days prior to this, the hospice group had tried to get me to abandon my sister to their care.
Within minutes Julie arrives, bursting into the house and sick room like a woman on a mission. She is brusque with me and I don't care. She's been completely negligent up to this point.
She begins to change Priscilla's diaper and my sister reacts violently to her abdomen being touched. I remind Julie that Priscilla has now not urinated since Saturday morning, four days earlier. She assured me this was normal, but feels around Prissy's bladder.
As she is examining her, another nurse arrives – this being the normal procedure when the patient is in his/her last 24 hours. This nurse was to assist her and help set up 24-hour care, their norm for when the patient is dying. No one had bothered to remind me of this, especially the previous day when Julie had come.
I step back as the two nurses begin to insert a catheter into my sister. My husband is in the doorway watching the women's faces intently.
The new nurse's eyes widen as my sister completely fills the largest catheter bag they have - to the top. She whispers something to Julie and we realize that Julie is now being recognized by a peer for having been negligent in Priscilla's care.
My sister's agony for the last four days, the terrible length of the terminal restlessness had all been due to failing kidneys and an overloaded bladder.
Julie turns to me and announces abruptly, "your sister has 24 hours left. We need to get some things ready for her and arrange care, if you have something to do, go do it."
I was furious, but also exhausted and more than happy to exit the room whilst they prepared things for my sister. I was also informed that the overnight caregiver was to be called and told not to return – hospice would be there instead.
Before I left, Julie checked the medicine log I'd been keeping since the beginning and noted that I had last given morphine at 4 a.m. It was now around Noon.
"Why haven't you given YOUR sister any pain medication?" she asked tightly.
"She's been asleep since 4," I replied, "I didn't want to wake her because she hadn't slept since Saturday."
"It absorbs through the cheek," Julie retorted hotly. "She doesn't have to be awake."
I stared the woman down coldly and told her, "Nice of you to tell me now, four weeks into her hospice care and hours before she will die."
There was dead silence in the room. I know the extra nurse was taking this all in.
The next few hours went by like a blur. Nurses came and went in order to introduce themselves and let us know what shift they were taking – four hour shifts for the expected 24 hours would require at least six nurses to sit with Pris.
The overnight caregiver came and said goodbye to Pris. The nurses were all hovering over my sister so I went next door to call our brother.
The end is here
Around 3 p.m., my husband burst through the door and shouted, "Come now Liz, Pris is passing."
I ended my call with my brother and ran next door. Julie was positioned on one side of the bed and was stroking my sister's hair. She had applied lavender oil all over her body. She was speaking to Pris soothingly - at last the woman was doing her job.
Another nurse was standing in the background watching it all unfold.
I turned on the CD player so my sister could hear the soothing melodies of her favorite artist, Enya.
I grabbed the Bible opening it to the 23rd Psalm and began to read. I couldn't do it. I started sobbing and had to request the other nurse read the psalm.
I took my sister's hand, and began applying my own oils and herbs that she had enjoyed using throughout the last four weeks. My husband stood next to me, his hand on Pris as well.
Her breathing was more panting now. I began reminding Pris of our favorite years and summers with our parents – our time in Virginia on the Potomac River. I spoke of iced cold orange Nehi's, Mom's fried chicken and sliced tomatoes, fishing together in the mornings, swimming off the dock in the afternoons, our close-encounter with a bald eagle, collecting shark's teeth and grabbing Carl's ice cream in the evenings.
The haunting voice of Enya began singing "Long, long Journey."
As my sister drew her last breath, after twenty years of suffering, of moving on through incredible odds, of bearing the pain, the truth, alone as we all must do, Enya's words were as appropriate as the scripture we'd read:
City lights shine on the harbour,
night has fallen down,through the darknessand the shadowI will still go on.
Long, long journeythrough the darkness,long, long way to go;but what are milesacross the oceanto the heart that's coming home?
~ Enya
My beloved sister was gone.
I looked up from her face, now relaxed from its pain and said, "She's just seen the face of Jesus."
It's as difficult to write this now as it was to endure it then. I still can't listen to Enya's song without sobbing. I miss my sister's crazy sense of humor, her practical way of living, her sometimes judgmental attitude, seeing her every morning out my back window – pulling weeds.
I still have all the memories.
I have to say that the hospice gal stepped up that last day. After my sister passed, she and the other nurse cleansed Pris just like women did thousands of years ago, with herbs and soap. They dressed her and let us back into the room to say our goodbyes.
We wouldn't have to let her leave her home until we were ready.
The hospice chaplain had come and prayed with us, staying until he was sure we were alright.
As I did with our father, I wouldn't leave Prissy's side until the funeral home director came to get her. While the day a person dies surely isn't their best day on earth, afterward, my sister looked so peaceful. For many years she'd suffered from rocacea and her cheeks had always been bright red. Now the red was gone and her frown lines were relaxed. She truly was at peace.
She's gone, what's next?
My husband and I, despite being exhausted, couldn't sleep the night my sister passed away. It had been six weeks of an emotional, exhausting journey. We were over-tired.
My sister had her affairs in order, so I retrieved her funeral instructions. She had everything planned right down to the hymns and specific church service she preferred. Our church family got to work on putting it all together and we met with the funeral director to finalize everything.
Unfortunately, we were expecting a large snowstorm the next day, so our brother's flight was rescheduled, thus requiring us to move the funeral to six days later.
The hospice crew had said they would all be at the funeral, assuring us that is what they do – see their patient through to the end.
It was a sticky few days. We had a huge snowstorm two days after Priscilla died and another one predicted for the night of her wake.
We called the retired priest who was to do the service since he had a two hour drive and relieved him of his duty. My brother graciously stepped in to carry out what must be most difficult. He'd done it for Dad and was now doing it for his sister – preach her funeral service.
Sunday night was the wake. Priscilla's coffin lay in the nave of the church, covered by a funeral pall. I had pulled together a few photo albums and flowers had arrived.
Several family members came, though the drive is far and we had a storm coming, it was nevertheless, a small crowd.
Luckily, the storm held off that night. Monday dawned bright and cold, the predicted clouds moving in by late morning.
Soon enough the service was over and once again I had the difficult task of seeing my husband lift the handles on my sister's coffin to carry it out of the church. This time my son was there helping too. It just about brought me to my knees. Both had loved Pris and both had helped look after her for the last 13 years.
Blessedly, the snow storm held off until her coffin had been lowered into the ground and everyone headed home.
As the flakes began to fall, we - the family - went back to her house for warm food and memories. By 8 a.m. the next morning, we were in a full-fledged blizzard.
None of the hospice people, except for the chaplain, showed up for my sister's funeral after telling me over and over they would come. No one sent condolences, no one said why they didn't show.
My sister was right when she had said a few weeks earlier, "It's as if they don't care because you are dying. And that's even though you're in their care because you are dying."
How to choose the right hospice group
Sometimes the problem with choosing a hospice group is exactly what we dealt with. My sister refused to consider hospice in the beginning and despite my experience in research and as a newspaper reporter, I was overwhelmed with caring for her while she was in the hospital and completing a major project my boss pressured me into finishing. I didn't do the research the way I should have.
The day my sister decided to leave the hospital, she also refused hospice care. Her doctor ordered it anyway and convinced her to accept it. It all went as if in a whirlwind. We trusted him and he referred us to the local hospice group in our small town on whose board he sat – adding that we didn't have to hire them.
Nevertheless, it was easy, with the referral by her physician – hiring these people seemed like a no-brainer. I am still, to this day, sick from my own decision to hire them. I knew better than to not research something like this.
When family members are faced with a dying loved one, they are exhausted, overwhelmed by the enormity of making decisions, additional responsibilities they now have, and wanting to do the right thing – not to mention the mind-numbing truth that their loved one is going to die.
No matter how prepared you think you are ... you aren't.
The American Cancer Society has a page that offers information on how to choose a hospice group. Some of these points encourage the family to:
• learn the care plan for your loved one, which hospice will undertake
• check the hospice company's references
• check the hospice company's personnel, their references and background
• is the group accredited? Are they Joint Commission recommended?
• what financial responsibility do they require from the family?
• what is their licensure, i.e., what does your state require?
• is the hospice group certified by Medicare?
Visit the site for more information: http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/hospicecare/hospice-care-questions
Have you had a bad experience? I want to hear about it
If you've already had a bad hospice experience and it's over, there's not much you can do about it now, except make sure you complain to the right people and don't beat yourself up about it.
Lord knows, I've tortured myself, cried many tears and suffered in the last nine months since my sister died. I've wondered what I could have done differently, how could I have alleviated her suffering sooner?
I can't change what is past. I can only help others to move forward armed with the right way to care for their loved one.
In the end, I kept myself busy, took a vacation and quit my job. I got out of a stressful situation in order to begin to heal.
About four months after my sister died, I ran into our overnight caregiver and her regular patient of seven years had just died. Even though this gal knew about our hospice group's negligence, she had no say in the care her patient would receive. The family person responsible had chosen the same hospice group as we had and ended up with the same two nurses, Julie and Tanya.
Whatever occurred in the last weeks, it was so bad that Julie was fired. As far as I know, Tanya is still there, ditzy as ever and dispensing bad medical care to dying people.
After learning this information, I decided to write a long letter to my sister's physician. I didn't expect a reply and I didn't get one. His wife is my nurse practitioner and I like her. She encouraged me to let her husband know what happened. "After all," she added, "Priscilla was his patient for a long time."
I told him everything that occurred and placed some blame on him for keeping Pris in the hospital longer than he should have. I blamed him for being unavailable to family members to talk with and for not disclosing that my sister was in end stage until we demanded it of him.
Keep a journal, a record of your loved one's final journey
I also kept a journal from the very first day my sister went into the hospital. We have no desire to take legal action against the doctor or hospice group, but we will never recommend them. The journal has served as a place I can go for a reminder of the good as well as the bad, during those last six weeks.
I've written this very long blog to get this out of my system. It's had 11 parts, each one longer than the one before it. Blogs are supposed to be no more than 500 words, so I gratefully thank everyone who has taken the time to read this most personal account.
I pray every single day that no one else has to go through what we did. When the time comes for someone to care for me, I pray that it is done properly, humanely, and with dignity and humor.
I know my sister is at peace now, she has, after all – gone home.
you were right, she just saw the face of Jesus. Hard as it was, you and Michael did what she needed and truthfully what you needed too. I'm so glad you were able to be there with her.
ReplyDeleteThank you for voicing your support. It's important to hear that.
Delete