Tender Mercies Amid the Challenges

Written by Peggy Peterson Martin

Peggy Dave 2014My husband, David Paul Martin, age 74, passed away the morning of November 5, 2016 at a Hospice Facility in Las Vegas, Nevada.

It all started with blood clots in early 2016… first one in his right leg, then one in his neck, then two in his left leg. Dave’s Oncologist couldn’t figure out why a 74 year-old man would suddenly start getting blood clots. She scheduled him for a colonoscopy, because he had colon cancer in 2003, and an endoscopy which they were supposed to do the same day. However, the doctor didn’t receive the orders for the endoscopy in time, so he only did the colonoscopy, which was clear.

Then on September 25, 2016, Dave had a stroke and was taken to the hospital by ambulance. He was expected to make a full recovery and released, but he developed pain in his side and back which kept getting worse. He was also unable to swallow solid food. Less than a month after his stroke, he was frustrated by the pain and liquid diet. Unable to get satisfactory answers from his Primary Care Physician, he asked to be taken to the ER. He was admitted and spent eight days in the hospital where an endoscopy was finally performed, which showed a large tumor at the base of his esophagus. It turned out to be stage 4 esophageal cancer and had metastasized to his liver. We found out it was the cancer that caused the blood clots and stroke! Dave was allowed to go home to consider his treatment options.

Martin's last family picture

2016, “Our last family picture,” Dave is in a white shirt and tie while the rest of us are in our grubbies because he wanted to have an obituary picture taken. We used something else, however. The blanket is covering his pajama bottoms!

Feeling a sense of urgency, all seven kids arrived within three days, including our son, David, who had recently moved to St. Thomas, Virgin Islands. This was a beautiful weekend together. Despite his almost constant pain, we shared many tender moments, laughs, tears, and memories. It was also a difficult weekend because Dave decided to forgo chemotherapy which would only have limited effectiveness at best. Hospice was called a couple of days later. Dave was getting weaker, but his wish was to spend his remaining days at home. Unfortunately, hospice couldn’t give him the medication he needed to manage his pain at home, so they transported him to their care facility in Las Vegas. He never regained consciousness once they medicated him. He passed away only ten days after his diagnosis. Though this was a very difficult time, we recognized several tender mercies from the Lord.

Martin's KidsA year earlier, our daughter, Missy, and her family surprised us and drove all the way from their home in Charleston, Illinois, to show up at our son, Steve’s house in Herriman, Utah, for Thanksgiving dinner. All our other children were there, and it was the first time in over twenty years that we’d all been together for Thanksgiving. Dave was particularly touched and told Missy, “I’ll never forget this special surprise.”

Martin GrandkidsIn June of 2016, despite pain from two blood clots in his leg, Dave and I made a trip to Salt Lake City to see our kids and 23 grandchildren, including Missy and her family who were there on vacation. Jeff and his family from Henderson, Nevada, also just happened to be there for his wife’s family reunion. Our son, Rob, invited us to do some temple work with him. When we agreed, he decided to open the invitation to his siblings as well. Maybe it was Rob’s offer to buy everyone lunch, but all seven of our children and all but two of their spouses joined us in the Mount Timpanogos Temple that day. Having our whole family together was such a special experience, and everyone felt the significance and joy of being together there. It just happened to be our 49th Wedding Anniversary! This is a memory I especially cherish since we didn’t make it to our 50th which would have been next month.

Dave & Peggy 1967As soon as Dave came home from the hospital after the devastating diagnosis, our son, Rob, took off work and stayed at our home for over two weeks, not leaving until after the funeral. I couldn’t have done it without him. He was a rock of strength and faith. He helped Dave with many of his physical needs which would have been difficult for me. While Dave was on his deathbed, we had a sewer flood through our house causing significant damage, both to the main floor and the basement. Rob discovered it and was there to help me bail water, trying to keep it from going into the bedroom where Dave was sleeping. Though we didn’t succeed, Dave never fully realized the extent of what had happened. Rob and some of our other children were invaluable in handling the mess and dealing with the plumber, restoration company, and insurance matters.

A tender mercy Dave had in his final days is that he was visited on two occasions by his deceased parents and brother, Leonard, who was killed while serving a mission for our church in Pennsylvania. This brought him great comfort and made him feel he would be with them again when he died.

Dave never became a burden. It was a pleasure to care for him. Several of our kids stayed in our home during Dave’s last few days. They took turns caring for him at night and spending time with him during the day. He was uncomfortable most of the time and in obvious pain, so it was heart wrenching to feel so helpless, but we were willing to do anything to give him even a moment of relief. His rapid decline and death were both devastating and merciful…devastating because it happened so fast and we felt cheated, hardly knowing how to prepare for or deal with our loss…merciful because he wasn’t made to suffer any longer.

We all feel gratitude for the few days we had with our dear husband and father before his passing. His love of family, great example, words of wisdom, and the blessing of serving him will stay with us long after the grief has passed.

***************

Dave and Peggy were one of the first ones to welcome us to our new neighborhood in Draper, Utah in the year 1996. Our friendship grew as Peggy and I participated regularly in a line dancing class for exercise. We also enjoyed serving together in a women’s organization for our church. In 2002, they moved to a new home in Boulder City, Nevada. Fortunately, the miles between us did not break the friendship bond. I treasure the memory of a few surprise visits when they came to Utah to see their kids. They always left with an open invitation for us to come to Nevada and stay with them. Dave encouraged us by commenting their home was wheelchair accessible. I regret we never made the trip. 

On this Memorial Weekend, I thank Peggy for recognizing and sharing her tender mercies during such a difficult time. I cherish our friendship and appreciate that when we’re together, it doesn’t seem like years have passed. We easily pick up right where we left off! 

 

 

 

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Caregiver’s Syndrome Update

Sunset on the beach

Hernia surgery should not be a big deal. I’ve put it off for over a year, not because I’m afraid of the surgery, but rather the recovery time. No lifting, pulling or pushing more than five pounds for three weeks and twenty-five pounds for an additional three weeks. That rules out taking care of Mark for six weeks. I’d still be procrastinating having the surgery had I not been sure two months ago Mark was going to need hip surgery. He was having pain, so I took him to the primary care physician and he ordered an x-ray. Since I have to transfer Mark onto the table, I’m given the opportunity to stand behind the glass wall with the technician and see the x-rays on the screen as they are taken. I’ve been behind the glass wall for every x-ray Mark has had in the past twenty-four years and I recognized the calcium build-up in his hips from a similar looking x-ray twenty-one years ago. I wasn’t surprised when the doctor recommended Mark visit an orthopedic surgeon after reading the radiologist’s report.

It made perfect sense to me for Mark to see the same surgeon who successfully performed the hip surgery years ago. Unfortunately, there was a six week wait to get an appointment. Meanwhile, I’m thinking the perfect time for me to have my hernia surgery, would be right after Mark’s hip surgery. He would need rehab and would qualify for care for in a rehab center—this would allow me some recovering time from my surgery.

I had my CT scan done and made the appointment with the general surgeon, who wanted to schedule the surgery right away. I told her it wasn’t possible until after Mark’s surgery.

Finally, when the six week waiting time ended, the orthopedic surgeon didn’t feel another surgery on Mark’s hips was possible, so all my planning went down the drain. Now that everyone knew I needed surgery for a hernia, there was no backing out. The past two weeks have been crazy interviewing and trying out aides who could care for this precious man of mine who is 6’2”, weighs 180 lbs. and is stiff and rigid, which makes him difficult to move. It’s been a challenge to find someone qualified to help him with showering and other personal care. Our daughter, Katie, offered to come and stay in our home to get her Dad in and out of bed and fix the meals. We are so fortunate to have her and since our son, Christopher, now lives in Washington, she carries the load with the support of her husband, Eldin.

Tomorrow is the big day for my surgery. I’m not at all concerned about it. I’m just wondering if, when and how I’ll get over my caregiver’s syndrome. I wrote about this October 16, 2013 and I still haven’t found a cure for it. Below is my account of the doctor’s appointment where I was diagnosed with it.

I have caregiver’s syndrome: I can make appointments and take Mark to the doctor more easily than I can do it for myself. My excuses are: I spend too many hours in the doctor’s office as it is; my issues are not serious; I’ll go later when things settle down. The truth is “trigger” thumb is not as serious as blood clots. However, it’s uncomfortable as well as somewhat debilitating. After trying creams and a thumb-support brace prescribed by my primary care physician seven months ago, I was convinced that only surgery would fix my problem.

I put off the appointment with an orthopedic doctor for months. How could I have surgery anyway? I need my hands not only for my care, but for Mark’s as well. Who would shower, dress, and transfer him? I didn’t want to ask family or friends.

Since September, when Mark returned home from the care center, we have the benefit of home health care. I really appreciate the extra support this gives me. I wish the insurance would see it as a continual necessity. But since they don’t, if I have to have surgery, now is the time, while Mark has this benefit.

I made my appointment.

After a three-week wait to get in to the doctor, I was told a cortisone shot would most likely take care of the problem. I had it and it did. Why did I wait so long? It was almost instant relief. The thumb is still a little stiff and I can’t completely bend it yet, but it’s only been one week.  The pain is gone.

I also made an appointment for my annual checkup that was four years past due.

“Have you had your colonoscopy yet?” the doctor asked.

“No,” I said, bracing for her reprimand.

“You’re almost 5 years late. You better get that scheduled. It’s not that bad.”

“I have helped my husband through the preparation twice. It was horrible!”

She imagines about how hard that would be for a wheelchair dependent person and the hundreds of rushed transfers to the commode, and then she agreed with me.

“The preparation is the worst part, then you get to nap,” she said, and suggested that next time I get Mark admitted in the hospital for the preparation.

“We can do that?” I asked.

She thought in his case we could.

After reviewing the questionnaire I had filled out just before the appointment, she looks at me and asks, “Why are you taking Flomax?”

“For my allergies,” I replied.

“Flomax is not for allergies it’s for the prostate.”

Turning red in the face I said, “Oh yeah, that’s my husband’s prescription. Mine is a nasal spray called, Flo something.”

She chuckled, “You mean Flonase.”

“Oh, yeah, that’s it.”

“You definitely have caregiver’s syndrome,” she said.

I’ll gladly take that reason over being absent-minded and resolve to pay more attention to my own health. I only have two prescriptions and I can’t remember the names of them. Mark, on-the-other-hand has several prescriptions, and those I know.

Mark’s well-being is dependent on me, therefore as a caregiver I should pay more attention to my own health so I can be well and strong.

It’s easy to say, hard to do. But I’m going to work at it.”

I’m afraid I’ve failed at taking better care of my own health. I still haven’t had my colonoscopy, but I took Mark in for his in October 2014. I’ve put off the hernia surgery for nineteen months. This tells me I’m still suffering from this syndrome. If any of you caregivers know how to deal with it, I’d appreciate some advice.

I’ll be in dreamland for the next week or so. I’ve been in the planning stages for this simple surgery way too long, but I’ll let you know how it all turns out when I’m feeling up to it. In the meantime, I hope all is well with you.

The Inside Story

Hospital RunI’ll be willing to bet no one gets excited about having a colonoscopy. A look inside with a scope doesn’t sound fun, but no food for a day and a prescribed drink which is meant to give you diarrhea sounds even worse. It’s unpleasant enough when you can get yourself to a toilet, but when you have to count on someone else to get you there…it’s horrifying for you and your caregiver. Ten years ago Mark and I were unfortunate to have such an experience. After a dreadful day and night of cleansing and no sleep for either one of us, we were sent home for another day of it because Mark was not completely cleaned out. That dreadful day turned into two with the end (no pun intended) result of a completed colonoscopy with two polyps removed and the recommendation to come back and repeat the procedure in five years.

The years passed quickly and I still shudder at the memory of it. I didn’t want to ever relive that experience, so we didn’t follow the recommendation. However, for the past five years it was always in the back of my mind, haunting me because I knew it was something we should do for the sake of good health.

Last year while Mark was hospitalized for blood clots, a shiver ran down my spine when the doctor asked when Mark’s last colonoscopy was. To justify my guilt for not taking him in as recommended, I retold how horrifying the cleansing experience was for both of us. He said, “You know, under these circumstances they can do the preparation in the hospital.”

I thought, why wasn’t I told this before or even after the previous colonoscopy? I guess no one thought about how useful that information would’ve been, so I just said, “Great, let’s get it done.”

“We can’t do it now with the blood clots and the anticoagulation medicine (warfarin) needed to treat them. He will have to wait at least a year before we can consider even taking him off the warfarin long enough for the procedure,” the doctor said.

So for the past year I’ve been worrying about this procedure and the ramifications of putting it off for so long. A few weeks ago Mark had another doctor’s appointment and ultrasound on his leg where the blood clots started. There was still evidence and scaring of the blood clots, but the doctor felt like Mark would be fine to be off of the warfarin for five days prior to the colonoscopy. Before we could change our minds, it was scheduled for November 7, 2014.

Mark was able to have a light breakfast on November 5th. One piece of toast and two eggs were allowed. At 11:00 am he was admitted to the hospital for two days of no food and drinks mixed with the intent to clean him out completely. Most of us only need one day, but due to our past experience and his limited activity, he was scheduled for the needed two days. Finally, the waiting and preparation was over and we were anxious to get this procedure behind us. With great anticipation, I followed the nurses as they pushed Mark in the hospital bed down to the procedure room. The doctor explained it should only take a half hour to do the colonoscopy. An hour later the clock ticking became louder and with every tick my worry increased to a higher level. An hour and a half later the colonoscopy was completed with one large, but assumed noncancerous, polyp was found and removed.  After the biopsy is analyzed, the doctor will call us and confirm the results.

“In all my practice, Mark’s colonoscopy was the hardest procedure I’ve ever done. His colon is elongated and floppy due to his inability to be mobile, making it hard to get the scope through.  We tried three different scopes and still couldn’t get to the end of it, meaning we didn’t see the last six to eight inches of his colon. I’m not sure when I recommend we do this again. Let’s wait until we get the results from the biopsy and then we can discuss when you need to come back.”

I don’t know if I should feel relieved, but I do. It’s over and I believe the doctor is about as anxious as we are to do it again.