End of life care
If you haven’t read part 1, you probably should. It was posted on September 11, 2015.
Along with this blog, it will give a complete picture to an alternative to hospice, when needed. And further provide some much needed education on how to help a loved one during their final days or hours. As much as we’d like to think hospice is a one size fits all, it’s not. For some people it just won’t work, and that was the case with Annie, as explained in part 1. So as a family unit we join hands and do the best we can. This is the way it was for Annie, and sure to move many people to tears as they view death through the eyes of a loving family.
This blogs picks up where Melissa was preparing to start comfort care (end of life care) for her momma. Remember these words from a loving daughter in the part 1—“My momma brought me into this world, and I can help her out.”
Melissa would be giving Annie 20 milligrams of liquid morphine, and 1 milligram of liquid Xanax, placed inside her mouth, near her cheek, and down by her tongue; and it had to be administered on the hour, every hour, using a small syringe like instrument. We also had a bottle of liquid atropine to give her, when the “death rattle” started.
“My momma brought me into this world, and I can help her out.”
When Melissa started comfort care, I was standing a few feet behind her by Victoria, and Beverly was sitting beside the bed in the wheelchair holding Annie’s hand.
She said to Annie, “Ann, now you know what will happen when I let go of your hand?”
Annie responded, “Jesus will take my hand.” (Annie’s last audible words.)
Beverly said, “Absolutely! Praise the Lord!”
Annie trusted me more than anyone, but it was appropriate that Beverly start her on her new journey to eternal life. After all, she was Annie’s “Angel.”
In Annie’s mind she was going to heaven. Faith is very powerful, and in its truest form can be especially helpful to those fighting terminal diseases. She certainly appeared to be at peace with her decision to get started on her new journey. Annie had already been to hell and back with her cancer. After all the suffering, in my opinion, it doesn’t seem right, or make sense, that the only thing left for the sufferer is death. Surely there is more to life than just death.
The one thing Melissa did that really pleased me, was how she spoke to her momma when she was giving her comfort care. The first few doses, she’d tell her momma, the dose I’m giving you, is the same as dad gives you and won’t hurt you; and it will help your breathing and relax you.
“So please momma, don’t worry.”
Melissa’s statement was factually true in the short term; but in the long term, Annie would start her new journey.
There were seven family members at our home, including me. Andrew and Hannah are Melissa’s older children, 18 and 16, respectively. Eli is Victoria’s son; and he was 11. He stayed upstairs most of the time playing video games. Then of course there was Beverly. We classify her as family.
We made a family agreement that Annie would have someone in the wheelchair at her bedside at all times, and holding her hand. We just took turns as needed or wanted. Melissa would administer all the medications.
Over the first couple of hours of comfort care, every now and then Annie would wake up, raise herself up off the bed a bit, smiling and trying to laugh. She couldn’t speak, but her mumblings were of a person trying to join in on a conversation. I was starting to realize she was hearing what we were saying. “I asked myself, how could that be?” She had enough morphine in her system, that she shouldn’t be waking up at all. So all of a sudden, what we said and didn’t say became very important. Annie seemed to be happy, so we needed to carry on and speak in the same dialogue and manner we’d been speaking. There would be no crying, but if one of us needed to cry, we would cry with silent tears. Annie didn’t need to hear a bunch of sad people sitting around her bed crying. That would make her sad, and in a sense spoil the peaceful journey she was on. Annie would want to pass over in peace, and we all became committed in making sure that she did.
Once again, Annie came through like a trooper. She gave us another gift, by letting us know in the only way she could, that everything was okay.
She was getting ready to start her new journey to life after death, and appeared to be happy. Morphine in liquid form helps the patient relax, creating a stabilization effect, which calms the breathing, slows the body down which in-turn would slow the bleeding process down. Annie was breathing well and obviously not anxious due to the Xanax.
November 2, 2010
Just after midnight, I was sitting in the dining room when Melissa called out, “Dad, something is wrong with Mom.”
She came running into the dining room looking for the flashlight, saying mom’s head just started shaking. I jumped up, gave her the flashlight, and followed her back to Annie. Melissa scanned her eyes, and they were unresponsive. We noticed that her left cheek near the left side of her mouth had dropped a bit. It was obvious, she just had a brain hemorrhage. We were expecting it, but nonetheless, that was a painful moment. We knew it was coming, which was part of our urgency for starting comfort care. But it didn’t change things, as Melissa still had to stay on schedule with the morphine and Xanax. It was more important now than ever.
About fifteen minutes later, Annie started the death rattle, which was very distressing to listen to. I gave Melissa the atropine to administer to her mom, and it worked perfectly. Over a short period of time, Annie completely relaxed again.
Without the liquid morphine, Annie would have suffered a great deal of pain from the hemorrhage; but as it happened, she didn’t appear to suffer at all. Her face still had a relaxed look, and was not distorted.
As I write this story, it’s almost as if it were textbook perfect in places. It really was! Never underestimate the power of the creator. I was now of the opinion, that our reward for taking care of Annie through her journey as we did, is quite easy to understand. We were able to hold and love her until the last possible moment. We weren’t lucky; and I believe this was how it was meant to be.
Around 2:00 A.M. or so, I went over and took Melissa’s place in the wheelchair. She’d just given her mom her next dose of medication. I told her to get on the sofa and take a nap, and I’d wake her up at 3:00 AM when the next dose was due. Melissa needed some rest, so I gave Annie her 3:00 A.M. medication. Watching Melissa’s strength and courage, giving her momma the drugs knowing full well what the outcome was going to be, made me strong again.
I knew Melissa would carry the sad memory of giving her momma comfort care the rest of her life, there was no getting around that. But I could help her out, and give her little breaks.
By now, I knew from the heart what comfort care was. When administered properly, and especially by a loving family, the loved one can pass over in peace.
Dying is such a personal experience, and in general I think the world can be very cold when dealing with terminally ill patients and loved ones. I know the hospitals and hospice do care about the patients, but you still have to remember the bottom line; it’s about money. What we did for Annie, was purely about “Love,” and honoring her wishes.
Melissa woke up, and gave the 4:00 A.M. medications to her momma. I had just got back in the kitchen when Melissa called for me.
“Dad, Mom is trying to call out your name! She wants you!”
I went straight to her, and as soon as I saw her, I knew she was a bit restless. I sat down in the wheelchair, and put her hand in mine. I started kissing her hand, then whispering words of love to her in her ear. She calmed down almost immediately; and her breathing became less labored. I tried to pull my hand away from hers, so I could lay down beside her; but she wouldn’t let go of my hand. With help from Melissa, I still managed to get up on the bed and lie down beside her. When I did that, she released her grip. I was able to lie close to her, tell her how much I loved her, thank her for being my wife, and kiss her beautiful face. It was a beautiful, emotional, precious few minutes; and I fell asleep loving her.
When I awoke, it was a couple hours later, and someone showed me a beautiful picture of us lying together. Victoria took the picture over Melissa’s protests. Victoria lived and worked in Georgia, and had been out three times while her mom was ill. She and I talked several times a week and I always kept her updated. I also promised her when things were bad, I’d send for her. She didn’t know my rules of not letting anyone take a picture of Annie when her condition was compromised. As it turned out, the picture is a national treasure to me; and one I shall always cherish.
Not long after I got off the bed, Melissa was leaning over near her momma’s face and quietly singing “Que Sera Sera, whatever will be will be, the future is not ours to see, Que Sera Sera.” When she pulled her face away, Annie had tears running down her cheeks. That was a gut wrenching moment! When a person is in a deep coma, as was Annie’s case, sometimes they do indeed hear our voices. The song had been a family tradition for a long time. Annie’s mom used to sing it to her as a child and Annie sang it to her daughters when they were children. Now Melissa was singing it to her momma, and obviously Annie was hearing her.
It was very difficult for me to comprehend what had just happened. Annie had been on heavy drugs now for almost eighteen hours. It really didn’t make any sense to me, but it was apparent that Annie was a gift to us, and one that just kept on giving. Acknowledging Melissa’s song with her tears, was absolutely priceless to that child. And under very traumatic circumstances, it really doesn’t get any better than that.
Through the early afternoon hours we kept on holding her hand, and loving on her as best as we could. Around 3:30 P.M. I received a phone call from Dandurans’s Pharmacy. They called to tell me Annie’s medications were ready for pickup. I told them I was on home delivery, but apparently they didn’t get the prescription in time, for them to make the 3:00 P.M. delivery. That put me in a bad position, as we couldn’t afford to let Annie run out of medication. But not being able to release the drugs to anyone but me, meant I’d have to leave the house. This late in her comfort care and I didn’t want to leave home.
Around 3:45 P.M., we received a call from Andre. They were having equipment problems with the airplane, so he’d not be in until 5:00 P.M. I knew he anxiously wanted to get here to say good-bye to Annie, and really I had no reason at the moment to believe he wouldn’t make it on time.
When Melissa started comfort care, I had no idea she sent Andre a text message telling him to prepare himself. She wasn’t sure how long the process would take. Sometimes it takes two or three days, or maybe longer. We had no way of knowing.
Around 3:50 P.M. I was sitting in the wheelchair by Annie, explaining to her why I had to go pick up her medications. By that time, I wasn’t sure she even heard me. There were no signs of stress on her face, and she seemed comfortable. I left almost immediately, but was concerned that she might have problems when I was gone. I really didn’t want to leave her, as she trusted me and responded well to my voice.
My ride to the pharmacy seemed like it took forever; but in reality is was only fifteen or twenty minutes. When I arrived, I felt a rush of anxiety shoot through my body when I saw the line of folks filling prescriptions. After a long agonizing fifteen minutes, when I got to the counter, the pharmacist walked over and put the medications in front of me. He apparently knew who I was. At that precise moment, my cell phone rang; and it was Melissa shouting in the phone that Momma was gone. She had so much pain in her voice when saying, “Daddy, she waited for you to leave!”
I just looked at the pharmacist and said, “I no longer need the meds. My wife just passed away.” He just stared at me; I think he already knew what the conversation was about.
He simply said, “Get going.” I ran out the door as quickly as I could and started the long drive home.
I think Annie’s passing while I was gone was how it was meant to be. I wasn’t supposed to see her die, as our thirty-month journey together was about living. I already had too many traumatic memories locked in my mind, so I believe, she spared that burden.
On my drive home, I called Melissa back to see if she had made the appropriate notifications. She had to call 911 for the paramedics, and Dr. Klein.
Not too long before I got home, Melissa called me and said the fire department personnel and paramedics were there and wanting to resuscitate mom. Melissa told them she was a DNR, but they needed the paperwork; and with the overload going on in her head, she was having trouble locating it.
I told her to try to hold them off, as I’d be there in a couple of minutes with a copy from my wallet.
She told them, but they said they couldn’t wait for me, which upset me, but I understood. However, as she’d been transported to the hospital many times by the paramedics, one of the paramedics that came in behind the others recognized her from previous visits and was able to confirm the DNR. There was also a two-by-three-inch red-and-white sticker on our front door that said, “File of Life.” That meant, “Do not resuscitate.” I suspect Melissa or someone was holding the door open when they came in our home, so they didn’t see it. Of course, we didn’t think of it either. They were just trying to doing their job.
I knew whatever they did wouldn’t hurt her, and that it wouldn’t have worked anyway. She was starting a new journey to a place far away from all the pain and suffering. It was now time for a deep eternal love.
Annie’s reasoning for the DNR was simple. She didn’t want to come back to a body with more broken ribs. Her ribs were so compromised by the cancer that pushing on her chest would have been a painful disaster for her.
When I arrived home, there was a fire truck or two, the paramedics, and a police car. When the family does comfort care and don’t use hospice, it’s my understanding that emergency services are told to advise the police department of the death. Officer Mattson was the responding officer, and was very polite, courteous, and professional in his investigation. In the state of Kansas you can legally do the comfort care for your loved one. Your state may have different laws, so make sure you know what you’re doing. When the police officer arrives at your doorstep, he’ll do a thorough investigation. If you as the caregiver think it is time for comfort care, get the doctor’s confirmation before you start. I’m sure as the doctor probably knows the patient, it could be done over the phone. A doctor will come to your home after the patient passes, give the pronounced time of death and the police officer will file his report on the death, based on the doctors input. In our case Annie’s family doctor came over; but had it been a different doctor with no knowledge of Annie’s illness, I would simply have referred the officer too Dr. Klein.
When I got out of my vehicle and started walking toward the house, Melissa came running out crying, in obvious pain. I gave her a big hug, and while crying with her, I simply said, “It’s going to be okay, sweetie.” As we walked back to the house, I was able to acknowledge the fire department and paramedics as they were preparing to leave.
Once I got inside, it was like being in a fog. I walked straight over to Annie, raised her up, so I could lay her body across my lap, and cradle her head in arms. When I kissed her I could feel the warmth of her lips, and as I held her cheek to cheek, I had a strong sensation of wanting to hold onto her forever.
Melissa had the blanket raised, and was rubbing her momma’s legs, while telling me how beautifully warm they were.
I was not in shock, as I believed I was given ample warning this day was coming soon. I was pleased that the suffering was over, and felt comfortable about the new journey she was on. But, on the other hand, selfishly, the pain and hurt of knowing I’d have to live the rest of my life without her was a bit unbearable at this moment. I just wanted her back! I can say this without any reservation. If I could have her back, even as she was, I would love and take care of her until the end of my mortal stay on this earth. That would be my promise to her.
When Dr. Terry Klein arrived, he walked over to Annie and checked her pulse. The pronounced time of death was 4:52 P.M., November 2nd, 2010. He visited with the police officer, and confirmed he knew we were doing comfort care for Annie.
I remember while holding Annie, that Victoria was sitting on the floor near the head of the bed, rocking back and forth while crying. Melissa was doing her best trying to help the police officer with his investigation. I believe he stayed just over an hour. Hannah and Andrew left to go to the airport and pick up Andre, shortly after their nanny passed. They both adored their nanny, and after watching her pass, it must have been a difficult drive.
Hannah told me that she and Andrew waited in the airport lounge for Andre, and as he walked up, they’d both been crying. Andre knew immediately that Annie was gone. Andrew told me they just stood where they were, made a circle, hugged each other and shedding some tears.
Andre arrived at our home about 5:30 P.M. I asked everyone to leave the room so he’d have some quiet time with Annie. I looked in the room at him; he was kneeling beside the bed, hands and fingers clasped together on the bed with his forehead on his hands. I understood his sadness. He’d lost his mom in December 2001. Now, the second most important person in his life was gone too. He was definitely in pain and showing signs of emotional distress.
I’m not sure what time it was but Sarah from next door (a national award winning hospice nurse) came over, and took charge of Annie. She and Melissa cut Annie’s nightdress off and gave her a nice bed bath, and dressed her in one of her favorite nightdresses. In her healthy days, Annie was always meticulously clean when she went out. This would be her final outing, and although different, she looked beautiful.
After everything started calming down, Melissa told me her momma took two deep breaths with a sigh, then her eyes opened wide. Victoria was holding her moms hand when she passed away. She told me her eyes were sparkling, as if she’d seen the new promised land.
Not long after Annie died, Janet from next door, and Annie’s angel “Beverly” and her husband Gene showed up. Gene led the family in prayer, as Beverly was too upset.
The paramedics, fire department, and Dr. Klein told the family how peaceful Annie looked. There was no signs stress seen on her face, which validated my thoughts that if there is such a thing as a peaceful death, we’d just witnessed one.
Annie was very graceful throughout her journey, which I believe allowed her to die with peace in her heart.
At this point so many things were filtering through my mind. I wondered if maybe all the struggles she had with the cancer and it’s wretched side effects, just wore her out, and she was ready to pass over to the other side. Or, was it’s simply that her creator was fulfilling his promise to her. I knew as a physical being I would never be able to resolve that question as it entered into the world of the unknown; however, to Annie the question was answered earlier in her journey, and from her perspective I knew it was all about faith.
A few days prior to Annie’s death, I’d asked Melissa to stop by the funeral home and make them aware of our situation. I wanted her to get all contact information so we were prepared, and make it easier for me to fulfill Annie’s core wishes.
At some point, Watson Funeral Home was notified of Annie’s death and arrived around 6:00 P.M. The gentlemen that came over representing the funeral home were Larry Sutherland and Matt Speer. Those two gentlemen were incredible, and met all our needs and more. They were patient, compassionate, and very professional in their duties. I was as protective of Annie in death, as I was in life, but soon realized I didn’t have to say anything to them. They treated her like a princess or one of their own. They gave us all the time we needed to say good-bye to her, while standing in the background like a couple of Honor Guards. When we were through saying good-bye to Annie, I asked Larry what the remainder of the process was. He told me they’d get her ready and on their way out, we could say our last good-bye. When they were through getting her ready, it appeared she was in some sort of body bag, which had a beautiful heavy burgundy blanket draped over the top, which left her head exposed for viewing. They then moved her over near the front door, where we all took a turn at saying our last good-bye to her. Once everyone had a chance to wish her farewell, she left our home for the last time. Melissa and I escorted her to the hearse.
I held Melissa tight as we watched the black hearse pull out of the driveway, heading down the road. The visual for my daughter and me will live in our memories forever. That’s when it finally sunk in and I knew our lives would forever be changed.
Part 3 of, “Only Love Can Break A Heart,” will be posted on November 11, 2015. It talks about the technical side of what happened after Annie left our home, (death certificates, etc) for the last time, to include what it took to get her ashes back to her motherland, England. And my trip over there on an Air Force KC-135 Tanker, to include a trip to the beautiful Rose Garden in her hometown where her ashes were sprinkled.
Because of Annie
Written by: Bob Harrison
