Ken had gotten rid of hematuria(70 days of blood in the urine), and 2 colds (he never let anything get on his chest, ever, since I'd known him),and was starting to gain weight, ounce by ounce (we could not weigh him, but we could see the indentations in his forehead from the brain surgery in 2006, fill in), and so a good friend recommended trying Marinol (medicated marih-a), to increase his appetite. I thought that was worth a try.
The first day on the stuff, I thought that he was having a bad reaction to it, but was told that this could happen 'til the body became acquainted with the medicine.So we persevered. He would usually have a short time during the day of very lucid moments. During these short times he seemed to understand all, and could communicate remarkably well. But , then later on in the day he would get extremely ornery, moving and thrashing around and not cooperating much with the nurse's aid, us, taking medicine, or just about anything. I was told to try the medicine for at least a week or so. Someone else said that you had to be on it for at least 2 weeks.
Well, by the end of the week, he got the hematuria back, after about 64 days of NO hematuria. Of course, I pulled him from it immediately, and prayed that this hematuria was just from the medicine. My son, after about 4 days asked me to stop the medicine because of his orneriness. In retrospect, of course, I wish I had. And we did not even give the full dosage. We were told to work up to the 3x a day.We never did. After pulling him from the medicine, within about 3 1/2 days the hematuria went away.
His voice had become very low and light sounding, not strong. And after pulling the medicine, it remained light. He continued to eat and drink fine for his circumstance the whole time, but we saw NO increase in appetite from the medicine.
Everything for a reason......
The Saturday before my sweet hubby passed away, he drastically changed. His movements became so very slow, his arm trailing off into the air. He suddenly only spoke 3-5 words or so a day---very, very few. Hospice came at 1:30 in the morning, and I decided to ask for a nurse every day, instead of the once a week normality.
The nurse's aid, a wonderful and dear person, came during the weekdays. Our nurse helped to get her in the beginning when we did all ourselves for the first couple of weeks during the huge snowstorms. Inevitably, we would have to do all on so many days, but having her come still made things easier, even if we worked our bu-s off, which we did so many days. We did everything for Ken. He was a mover, (and never once got any bedsores), just like he was when he was a little baby/toddler. But, that made helping him very difficult at times.
He would crush our hands with his legs or squeeze us so hard, helping him with his daily needs.He got so confused over what we had to do for him. I , of course, did everything, and my children helped out when I would be just drained at times. But, it was amazing how they did everything for their father. The 2nd day that he was home in Hospice, I went to take a shower. When I came down they had him in the wheelchair, and were sanitizing the bed, changing the sheets, etc.. Later on Ken wouldn't even be able to sit in the wheelchair. As he got weaker, he could only sit up for about 15-30 seconds without passing out. I think, actually, in the end, that it may have been the Lyme that got him, on top of the cancer,as his last scans in Feb continued to show the cancer not present in some areas where they had once been. The cancerous areas were decreasing.
He also developed a bulge in his right jaw, that no one could figure out. It did not act or look like cancer, and our chiropractor thought that perhaps a nodule or muscle had gotten stuck somehow in an unusual location. He contorted his body like a pretzel , sleeping between the 2 railings at night. We stretched him daily, so that he would not get stuck in such a position permanently, which often happened with people in his situation.
We were so diligent, that the day he died, there was no contortion whatsoever. It was such very hard work, as he sometimes thought that we were doing this to harm him. (It was mentally and physically grueling at times for us). But, most times, he would release plenty of "ahs" as he stretched out his muscles, multiple times a day, sometimes even exercising them himself. He was so cute, trying so hard to exercise 'til just about the end.
His temperature that last Sunday was 96.7 . A nurse came on Sunday as well, we were not sure if he had aspirated some medicine. But, his lungs were fine.
I have to tell you here, that my husband was raised Catholic. He was not much in terms of a practicing Catholic, although the last couple of years he attended Easter services at a local church. Throughout the years he came to church with us for important and various services. Parishioners in our little church, Russian Orthodox/Eastern Orthodox, had become acquainted with him, some more than others, throughout the years, no matter where we lived. Our last priest knew him fairly well after 13 years.
The Hospice chaplain, a lovely man, came regularly as well. He is a Catholic priest who studied/participated a bit with the Eastern rite and was quite familiar with the Orthodox church as well.
Well, Ken had told me that he would love to be buried Orthodox, because of their beautiful, all encompassing services for funerals. Now, that in itself is not necessarily reason for becoming Orthodox, but we spoke of it while he was ill. He first said that we would talk about it "later". Then he started to say that yes he would like it. I/we never pushed, because Orthodox do not as a rule do that. No doubt there are those who do, but overall, that is not the Eastern Orthodox way. It is more by example, and not preaching to those of other faiths. Ken had also said that he would like to be cremated, but I told him that if he became Orthodox, that this would not happen, as it is against the faith.
Monday rolled around and I drove out to where we used to live for my dental appointment. The Hospice nurse told my daughter that his temperature read 88 degrees! We all thought that her thermometer was broken. He had his massage therapist, a volunteer in Hospice, come. Ken brought her to him to hug her a couple of times. She, a dear, dear soul, was touched.
We called our priest, who earlier in the year, when Ken was in the hospital, would not really consider a Chrismation, without classes.We called one of the retired priests who attends our church---the nicest man. A truly lovely soul. But, he said that he did not want to 'step on Father's toes', so we called our priest again, and under the circumstances he agreed. Father was so very kind.
Father asked Ken if this was his want, to become Orthodox, "Yes," was most definitely his response,in his now whispery voice for all to hear. I was so very careful, as I never wanted to push. It had to be Ken's wish, and it was.
My aunt and uncle said that they had never gotten dressed so quickly and rushed over to our home. They had been in their pajamas, settling in for the evening. They had no idea that Ken was even considering a Chrismation. (Baptism is
for those not having been baptized before, chrismation for those already baptized elsewhere). My good friend and her husband came, brought a cross, and her husband was the sponsor. All of us were there.
You have to understand that Ken hardly spoke, moved, looked at us, or anything since that last Saturday. For the Chrismation, he was so animated, smiling ear to ear, more than he'd smiled almost the whole previous year. To this point it had been a few days short of 6 months since he had the massive stroke, multiple bad seizures, and blood clot in the lung, the day after Thanksgiving last year,(all this on top of stage IV lung cancer, whole brain radiation, chemo 2x's, a clinical trial, chest radiation, brain surgery, and a bad virus that he contracted in his last chemo last fall,while his oncologist had the swine flu, and then the subsequent vomiting and his kidneys working at 20 or so percent because of the virus and vomiting)...my poor baby, my sweet, sweet hubby.
He was so very animated and excited, and loved when we all laughed with him, laughing and smiling more. I felt a lightness on my shoulders right after the chrismation. Everyone could not stop smiling . Everyone there was touched and felt the blessedness of the event. It was amazing.
Everyone left, and we stayed with Ken 'til late. He kept drawing us to him to hug and to kiss us, staring deeply into our eyes. This after not even being able to get his attention since Saturday, waving our hands in front of him to see if he knew we were there, if he would flinch his eyes. He stared so intently, telling us how much he loved us with his strokes, hand squeezes, pulling us to him.
Alex and Serge finally went to bed. Larissa stayed on the couch as she usually did, and I stayed on the chair by his side, laying my head next to his a lot. He wanted us near him always.We kept putting the blanket on him, fixing his sheets, etc, as he moved all night long. Larissa told him she loved him, and he said 'I love you' back at one point. Three of the very few words that he spoke all day/night. He finally settled down to sleep about 5:30 in the morning.
Tuesday morning, 25 May, 2010 Ken awoke after just a couple of hours sleep, as well as I and Larissa. Alex was not going in to work, in order to stay w/Ken. Serge had intended to go to school, but I told him to stay home for his dad. I called the Hospice nurse, and luckily our nurse was available and came shortly. We were all with him. He did not move, did not look at us staring off, was so very silent and still, breathing very slowly. His body temperature was now 87 degrees.
We told him how much we loved him, what a great husband and father he was, and all the people who loved him. I asked him to forgive me for anything that I'd ever done or said that upset him in any way. We called his mother . She spoke to him, and 2 tears dropped from his right eye. Hearing is the last sense to leave. All four of his sisters spoke to him by phone, 2 from Hawaii at 3am Hawaii time. My sister, who had not been able to visit him yet, called and spoke to him as well, and his good wheelchair bound friend, who he had coached since he was about 13 years old after he was shot by a crazy man- now a thirty-something year old doctor.
The time between his breaths became longer, as the kids cried out , "Breathe, Dad, breathe!" We were all around him, the breaths taking up to 30-45 seconds it seemed, they cried a few more times for him to breathe, he did, and then he took his last breathe. He passed away at 9:16 am. I noticed the clock on the phone, and the hospice nurse in the other room heard our wails, and sobs, and angst in tears- and logged the time of death from our wails.
He died so peacefully, needing no medicines of any kind. In the Orthodox faith this is considered a true blessing , and there are those that consider it a miracle. The night before, I asked God to heal Ken completely, but that if it was not in his plan, to please keep him from this mental suffering that Ken was going through in this state.
Ken did not want to leave us. My sister said that he had one foot in heaven, and three here on earth. I am reminded of the movie Princess Bride, when mad Max(?-Billy Crystal) says that the main character(Elwes-I am forgetting his character's name right now) is almost dead, but not quite. He asks him, what is so worth living for/for hanging around, and he replies faintly, "True Love". Again he asks, and again he replies, "True love". Only the week before, Ken told me that he was scared of dying. He came to a peace on that Tuesday.
We kept him with us for a few hours, not wanting to let him go. Puma, my little kitty who loved sleeping with him, and by his head so many times, slept with Ken until the funeral parlor came for him. Kiska was scared of everyone coming, and when they had taken him, and everyone else had gone, he came upstairs looking for Ken and was upset. But, of course he knew, as animals can smell death .
The house was quiet, but then it filled up again with friends and neighbors, bringing food and flowers, hugs and kisses, and tears. We got tons of chicken that day.haha
There have been some blessings, as does occur when loved ones leave us. We are always looking for the blessings, especially when they stare you in the eye. A neighbor friend and their family, having been estranged w/one another since a death in the family, became reunited that very day in front of our home. Blessings. A cousin visits another after 25 years of not having travelled before. Life just never gave the chance to visit. Blessings....there are many more.
The next day we visited 2 local cemeteries. I had previously thought about where in the world would he be buried if he left us. I tried talking w/him about this , but his answer was always, "I don't know". We decided on the one hidden more from the road in the neighboring town. But, when we got there the next day to speak with the caretaker, they only allowed markers in the ground, which upset me, because it made me feel as if it was in a military cemetery. The monuments in this cemetery date back to the 1700's with beautiful carved angels hovering above throughout.
I made an appointment with the cemetery in our town , 2 minutes away. It also is from the 1700's, but is more simple overall. When we drove in, the gentleman, Eric, stated that the spaces available were in the front by the road. I had told my kids that I didn't want anything by the road. I started to cry that nothing was working out right. Eric said,"Wait.Wait. We have other areas, on the side by the trees". I asked if there was anything to the back overlooking a beautiful, old farmette. He answered that there was. He broke up a 4 top plot to make a 2 person plot, and it was under a tree overlooking the farmette. And so, Ken has the most beautiful spot in the cemetery under a cedar tree on top of a tiny hill, overlooking the serene farmette. Everyone who sees it remarks, "How did you find such a spot??? It is just wonderful!"
My good friend and her husband have planted wonderful flowers beneath the tree and around. Technically we are not able to plant anything, but I told the caretaker that my husband loved gardening, and that I would have to plant a little something. He was not upset. He buried his young son there 2 years ago. He had just graduated college, and was in a car accident. The loveliest man. He even stopped by the house to drop of the deed to the plot. That's what living in the country is like.
My brother and his wife had the reception catered at our home, following the burial, by our favorite local bakery & cafe. The food was amazing. The people were extraordinary.The house was filled with laughter, and stories, and much love, 'til late at night, with a few young friends overnighting as guests. Someone even left a pair of black, men's loafers by the front door (Do you know whose they are??haha) Ken's blown up pictures, from the surprise 55th birthday party last July were spread throughout the home(and still are). Flowers were everywhere for the longest time, and I talk to Ken at the drop of a hat.
Larissa and I have had dreams about him. I saw 2 flashes of something to the sides of me, at 2 different times, while crying and talking to him. Years ago we promised one another to communicate to the other whenever the time came. I don't even know if he'd remembered that . One day while thinking about him on my bed, his eyes came to my mind's vision, off to the side. They stayed there for a minute or so.
At times it feels as if the family is falling apart, in order to regroup and become the new entity that it will be. I remember that happening after my father died, and again after my Mom died. And good things came from both sad events. They always do.
May you find the good in the bad, the open window after the closed door, may you accept God's guidance in the little and big ways that unfold. I am trying hard to remember that all is in God's hands and that there is a reason for this all, and to trust in the 'master plan' as I choose the details of my new life. Be blessed.
We miss you big time.
xo Lydia
To say that it's difficult without Ken is an understatement. So we've changed things around a bit. We have been keeping busy. The headstone came in a few weeks ago and looks very nice. Peonies on the upper corners. Those who knew Ken at work were privy to our peonies from our garden, which came from his parents' yard on Long Island. Although with the drought this summer, I don't know how they've survived. We shall see.
