by Rayele Bartholomew
Hello. My name is Rayele, but most people call me Ray, and I am about to tell you a story recapping the last year of my life. It could be a very long tale, but I will attempt to keep it as concise as possible.
It was Saint Patrick’s Day 2013. It was a Sunday. I awoke around 7 AM. Being the fact that it was a weekend, I had left my phone downstairs. When I checked it, I had two new voicemails both from my mother. At this time, she was 62. She lived alone, worked full-time, and was basically healthy woman, other than the facts that she smoked and had the beginning signs of Osteoporosis. From her voicemails, I learned that she had gotten up to use the bathroom around 6 AM. Something had happened that made her pass out and when she came around her face was full of blood. She had called the ambulance and was waiting for them to take her to the hospital.
And so it begins….
This first time, she spent 12 days in the hospital. Her doctors concluded that she had passed out due to irregular and highly dangerous levels of sodium and potassium in her body, but none of them could tell us why. When she was released, her body could still not maintain a healthy level of sodium or potassium, so we began our search.
We visited every “-ologist” from Jamestown to Buffalo- to Erie and Olean.
In June, it was finally revealed that she had stage 4, small cell lung cancer. It was very aggressive and her oncologist said that the best that he could hope for would be to hopefully shrink it or keep it at the same size but he could not cure it.
So she started chemotherapy. She endured 3 rounds of chemo-each one month apart- July, August, and September. During these same months, she also had 2 blood transfusions, a hospital stay for a blood infection, and 2 hospital stays for dangerously low white blood cell counts.
This brings us into October. My mom brought up the subject with her oncologist as to why she is going through all of this when she clearly will not be getting any better. She spent the entire summer sick. She was lucky if she got one good day out of the entire month that she was not vomiting before she went into another round of chemo. She was barely able to eat or get out of bed. At this point, she had lost all of her hair, approximately 60 pounds, and most of her days would come and go without her being able to even see the sunshine. Now, this woman that I am describing in my story is incredibly strong and stubborn. She has been fighting as hard as she can, but now she is getting depressed and this is just no quality of life that anyone would want to live. She is ready to stop. I say “stop” because neither of us are ready to admit yet that she is going to die. The thought, I’m sure, was somewhere in the back of both of our minds but we are nowhere near being ready to acknowledge it. I told her that I cannot even begin to imagine what she has felt while going through this and I support whatever path she chooses to follow. That was it. No more chemo.
She makes a visit to her primary care physician. He is a wonderful man and has been her doctor for about 15 years. He tells us that of course, he can’t be sure, but if he had to give an estimate- he would think at the rapid rate things have progressed-she has about 6 weeks left. 6 more weeks would put us around Thanksgiving time. Great.
Now, up until this time, I had been performing a balancing act of my “normal” life- going to work, spending time with my husband and kids- and my “illness” life- my mom. But the “mom” portion was starting to wear on me. It was a constant state of worry. If I was not physically with her, then I was calling her to check on her. I stopped at her house before work, on my lunch, after work, and called at least 3 times in the evening. Sometimes, this would make her angry as I would keep waking her when she just got to sleep. But as I told her, I was just making sure that nothing exciting was going on that I was missing. All this time, I was feeling guilty that I wasn’t putting my life completely on hold and moving in with her.
She continued to get weaker and it was even difficult for her to stand long enough to re-heat something in the microwave. I contacted several local agencies for help and advice. None of them gave me any advice and all of them were going to cost us too much out of pocket that we couldn’t even consider them options. We just could not afford it. Plus, her employer had just sent her a letter stating that they were “letting her go” as of November 30th, which would mean no more health insurance. Her employer was wonderful and they had kept her on much longer than they could have. But it did not change the fact that she would no longer have health insurance. Now, we were getting very frightened.
For at least the 10th time, one of my co-workers said to me “Ray, Seriously- call Hospice”. No way did I want to call Hospice. That would mean admitting that she was going to die and I was still not ready yet. But I talked to my mom about it and she agreed. So I made the “dreaded” call. This being my first time having to handle anything like this and also my mom’s first time, we were under the impression that Hospice came in for maybe the last few days, pumped her full of medicine, and made her comfortable until she passed. I have no idea how the general society got to these sort of conclusions, but boy did we learn that we had the wrong idea. I will never forget that first initial consult. The social worker and nurse arrived at her home. She still had dangerously low white blood cell counts so I asked them to don a mask to help lower her risk to exposure to germs. These two Hospice workers explained to us what Hospice was all about and the services that they offered. Until this time, I had been questioning doctors. “Why isn’t she being tested for this”? “Why are you switching her medicine to that”? “What are you going to do about her pain level”? And these are just the questions for the doctors. “What about her health insurance”? “How will we be able to get her the medicine that she needs”? “Does she qualify for Medicare”? “How would we apply”? “What should we do about her car that she has not been able to drive in months but is still paying the loan and insurance on”? “Should we seek the advice of a lawyer”? “Who can help us”? We had absolutely no idea. Everything was unknown. We didn’t have answers to any of the questions. Yet the questions just kept coming.
But now we had Hospice. And on that very first visit, her nurse and her social worker assured us that everything would be okay. For the first time, we knew that it would. As we engulfed all of this new information, I almost cried. I never like to lose control so I held it back. But my face covered with my mask only revealed my eyes and her social worker looked at me and winked telling me “you can do this and we are going to help you do it”. I felt like two angels had just swept in and taken the weight off of our shoulders. Now, I am not just saying this to sound poetic in some lame way. This is the fact of how we actually felt, or at least I know that I did.
The next few months I was able to take a giant leap back. Our Hospice team took care of all of our needs. Now, instead of making calls to doctors or filling out paperwork, I was able to focus solely on my mom. I am not sure if you know this but apparently, losing a parent is a very difficult thing to go through. Yeah, I didn’t know that either. So my visits with her now were actually that…..visiting. We knew that Hospice was doing everything that they could and we trusted them completely. They handled all of her needs….physical, emotional, and spiritual. My mom was beginning to act like her old self even though her body was clearly taking her in the opposite direction.
Fast forward with me, please, to the week of February 3rd. I got called to my mom’s house to have a meeting with her, her nurse, and her social worker. My mom had deteriorated to a point where it was evident that in case of an emergency, such as a fire, my mom may not be able to evacuate herself. A decision needed to be made and quickly as to what was going to happen. Could she go to a nursing home? Could someone come live with her? Being an only child with no local relatives, it was a decision that just her and I needed to make. We decided that it would be best for her to come live with me in my home.
With the help of Hospice providing me with a hospital bed, a bedside table, a bedside commode, and whatever else she needed to make her comfortable- I converted the living room into a bedroom for my mom. On Friday, February 7th, she moved into my home with my husband, my daughter, and me.
I cannot even imagine what it must have felt like for her. Knowing that she was leaving her house for the last time and she would never be returning. I never asked and she never spoke of it.
As I stated earlier, my mom lived alone. That isn’t entirely true. She lived with two female cats- mother and daughter. And to her, these two lovely ladies were her babies. Now what would we do with the cats? Well, they could not come with her because my home already had 3 animals. Plus, her cats had their claws and quite frankly- they were just not nice. They barely liked each other, let alone any other animals.
Once again, we called upon Hospice. They provided a pet therapy service. This was absolute heaven for my mother. The kind woman came in to her home and took the cats originally to the Human Society, but they have since both been adopted into good homes. The pet therapist visited once a week to the Humane Society and took pictures of my mother’s cats playing with the other cats. Yes, I know I said they were not nice- so I am not sure how this happened but she had the physical proof. The therapist would then visit with my mom, show her the pictures, and give her updates. My mom’s face would light up and when I told her that Bobbie had called and was on her way over with new pictures. We printed the pictures and kept them next to her bed so that she could see them anytime that she wanted. When you cannot physically get out of your bed and you are counting your time here on this earth, it is a service like this that makes your day and makes you feel like your world is still spinning.
I stayed at home with my mom and the first several weeks were great. We laughed, watched movies, and reminisced. But before too long, it was evident that something else that we couldn’t see was happening within her body. The cancer was moving into her brain….and very rapidly.
I was rarely scared. I should have been scared all of the time. I still had the unknown. But our Hospice team provided us with constant support the entire time. Never having gone through something so tragic, most times I felt like I was losing my sanity. But our team assured me that this was normal and to be expected. Most days the only sunshine that either of us saw was the little bit when I pulled back the curtains while she was awake. Like I stated earlier, she had been living this kind of life for almost a year. Now, I know that I said that I would try to make this a short story but it is extremely difficult to fit an entire year into a few pages. We are almost done.
9 weeks and 6 days my mother lived with us until she finally gave in on April 17th and she took her last breath.
There are no words in any language that can describe what Hospice provided for us. I will be eternally grateful for the love, care, and support that they gave to me and especially my mother.
Now this story is mostly about two people. And if this team of extraordinary people made such a difference in our worlds and touched our hearts in such little time- well then I can only imagine the lives that they must touch every day as my mom and are just two tiny drops of water in a giant ocean.
(Editor’s note: Rayele is now a Hospice Volunteer. Many of our volunteers come to us after a loved one has been under our care.)