Wednesday, September 14, 2016
The wheels are in motion for MM's return to home. I need to clear out living room furniture: an old sofa handed down from my parent's retirement home in West Virginia. I remember taking MM there while I was still figuring him out before the first of two breakups. The figuring took me a good 20 years. Now I will move that old sofa out for good. I remember my Dad and wish he were here. Monday a hospital bed, wheelchair and other ecoutrements will arrive. Tuesday MM himself will arrive, barring further complications before then.
Yesterday was long. Melanoma Man was feeling good, awake, alert. It took a very long time to determine exactly what he was trying to say, but he was trying to say a lot. Molly leaves tonight Uncool Wayne arrives tonight. I worked a mini day: 9-2 today. Still trying to save my remaining FMLA days. MM is eating again and talking non-stop. I slept every night while Molly was here. Hopefully the same will be true once Wayne arrives. The docs at the inpatient hospice are buying me some time by tweaking his meds. That allows them to keep him longer. He still can't walk but can't remember that he can't walk. He cried off and on all day yesterday. The funny parts are still there. For 45 minutes he kept telling me " Mike Pence is a Beagle Scout." I was thinking about Tippy and Tiger and other beagles I have known picturing them having their scout meetings. I don't think they would have let Mike Pence into their troop, do you? Surprisingly, "Mike Pence is a Beagle Scout" actually means "Would you take my contacts out?" It took me 45 minutes to figure that out. I think they have the same rhythm, those two statements. Try it. Mike Pence is a beagle scout. Would you take my contacts out.
Sunday, September 11, 2016
It is Sunday morning. Melanoma Man looked a little better yesterday, a little more color in his face. I spent the day with him. My Molly, who is my birth mother, arrived Friday night. I don't talk about Molly much because I almost feel as if it will jinx her and none of it will be real. More often I feel disloyal, like a cheating spouse, receiving kindness I don't deserve. She took the boys to the beach yesterday morning, while my friend Kris brought over every cleaning supply known to man and two friends to help. Kris, Heather and Stephanie spent 3 hours cleaning my house, even steam cleaning my rugs. They made breakfast for us before the cleaning began.
When awake Melanoma Man asked to go home all day. On the drive home Butter asked, " is Dad still dying?" Yes. The social worker came to see me and discuss Medicare criteria for inpatient hospice stays. She was nice, but some of what she said wasn't true. While Dr. O had said they would keep MM until the end, the nurses and social workers are ushering us out the door. iMac is anxious. He says he doesn't know how we could do it, perform the level of care that MM requires. Social work has talked about a long term care facility. Images of my mom, stuck in her non- working body and unable to speak in the nursing for 7 years pop into my head. I reassure myself that this can't possibly go on for years. I get out the calculator to try to figure out the cost of a CNA at home to help me, upwards of $500 a day. I can't move him on my own. It always takes two people to pull him back up in his hospital bed after his 6'4" self has scrunched down to the bottom of the bed. I tell myself to just take things one day at a time. I am able to do that only about 10% of the time. It is 6:49 am. I am about to get dressed to go see him. When I arrive each morning he is usually a little frantic, wondering where I have been during the night. I have slept better this week than I have since August 3rd, which is the day he returned home from his last hospitalization.
Thursday, September 8, 2016
Whew! Yesterday Dr. C was here. Today Dr. O. Dr. O said "We are keeping him here. We can keep him comfortable. You can't care for him at home and the kids can't. I'm sure you've been fed information that has led you to believe that you need to care for him at home. This level of care is just too burdensome and cannot be expected of you."
I had asked the boys bout their wishes and collectively they decided they would be most comfortable with their Dad dying at a hospice center rather than at home. Still I thought we would have to do a transfer back home in the interim and it worried me, how we could do it. Now that worry has been lifted and I am so thankful.
Tuesday, September 6, 2016
It was an extra long weekend, as the whole city was preparing for Hurricane Hermine, who thankfully did not arrive in our beach community as expected. My clinic announced it would be closed for the day on Friday. Melanoma Man called as I was on my way home. He was proud that he could remember how to make a phone call. He and Ishamel had moved some things in preparation for the hurricane. As a result the cable tv was out and he was a bit frantic. When I arrived home I found that there were a few missing elements to our backyard hurricane readiness. Sandbags were in place, the pump was set up without any outlet hose. Since our yard and house flood when it rains for 24-48 hours, a functioning pump was critical. A quick trip to Ace hardware, then home to complete the pump set up and work on tv. My evening attempts to get the cable up and running were unsuccessful. Friday morning we awoke to wind, but no rain. Hermine was headed farther north. The days are long for MM and I so when 8:30 pm hits we usually seize the opportunity to get in bed. I don't remember much of Friday or Saturday. Sunday we went to church. MM wanted to walk the last 2 blocks of the journey home, so I let Melanoma Man and iMac out of the car two blocks short of home. A few minutes later imac came racing through the back yard and in through the sliding glass door to the kitchen. "Dad fell. There's a lady waiting with him." The lady just happened to be writer, fighter, mother. iMac and I raced through the backyard and a neighbor's backyard to MM. Rescue was on the way. They assessed MM, no breaks, offered transport to the hospital, which MM declined. They helped me get him in the car and made him promise to use his walker from the car to the house. Monday morning MM told me he knew he was having seizures during the night, he felt that he was deteriorating quickly, wanted me to call Bob, one of the priests from our church and our hospice nurse K. Bob was in Vermont as it turns out. By afternoon MM had lost the ability to put together sentences, and I had caught his falls 3 times. He couldn't remember to tell me he was getting up from the sofa. So I stayed in hearing distance. K came at 3:30, but was not hearing my message which was I need to be set up in the house NOW with a wheelchair, hospital bed. I told her this was moving fast, as in a brain bleed or edema. She told me to do a google search for safety tips for a person with brain tumors.She told me to read the pamphlet. Read the pamphlet? Are you kidding me? This was not a pamphlet situation. She told me I could go to Target to get a side rail for a toddler bed. This was "off the record" advice because she said it would be considered a restraint and legally she couldn't recommend that. I told her I can't go to Target. MM is too wobbly. She told me she couldn't give me any advice regarding whether MM needed a CNA rather than Ishmael, his companion. She left me with a bag of disposable briefs and a leveraging belt. An hour later MM got up from the sofa. I ran to help him. I was right behind him. As he fell I caught him under his arms to soften and guide his landing. I called iMac. iMac helped me lift him onto the toilet, and pull off his boots and wet clothes. By this point MM was an unconscious six foot four inch long, 195# bag of horse feed stuck in a tiny bathroom. iMac and I could not move him. I remembered that Writer/Fighter/Mother had told me that both she and her firefighter husband were freakishly strong. I called. She sent her husband over. iMac, Firefighter and I carried MM out of the tiny bathroom to the bed. I told him hospice had just been here. He said call again. Nurse David arrived this time and noted the mental status changes, loss of consciousness, incontinence and inability to follow commands. "Would you be ok with admitting MM to one of our inpatient centers for symptom management?" David asked. Of course, since the only tools I had to manage him with were the leveraging belt and disposable briefs that K had left for us, me sitting on the edge of the bed to keep him from falling out and a bunch of seizure medications that he certainly couldn't swallow in his current state.
Friday, July 29, 2016
Call Me Ishmael
July10-Ishmael's first day. I haven't read Moby Dick, but have become acquainted with the first line of text in recent weeks. July 5th I began formulating a plan that would allow me to save my last 28 days of Family Medical leave. By this time I had exhausted all of my sick leave and vacation caring for Melanoma Man during 3 brain surgeries, a week of radiation, seizures and radiation damage. MM survived it all but no longer has the skills to be home alone. I thought back to the day Mom died which also happened to be the date of MM's first seizure. It is that life insurance policy of which I am one of the beneficiaries which allowed me to bring Ishmael into our lives. If I stay home to care for MM myself I will exhaust all of my FMLA, lose my job, lose the health insurance on which my family relies. Mom, with whom I had a difficult relationship made it possible for me to pay 66% of my gross earnings toward Ishmael's salary. I can't say I know him well, but what I do know is that he is kind, he looks out for MM, he preserves MM's his dignity.
Butter's Birthday and the Smell of Cancer
August 13-Butter turned fourteen today. We took Butter, iMac and four friends to Suicide Squad, which as it turns out may have been inappropriate to take other people's kids to. It was PG13 but I did no research ahead. Oh well. MM came along too. I'm glad he was up to it. There was another hospitalization August 3-August 5. MM signed up for hospice on August 5. His pareital lobe surgical cavity has refilled with 3 cm of enhancing matter, which means it could be either a tumor or some necrotic/dead brain tissue. The 8 new enhancing companions sprinkled throughout his brain strongly suggest that the parietal lobe mass is melanoma. MM's hands began to shake on July 30, more confusion on the 31st. He decided to wait until Monday August 1 to have me call Dr. Mody. She called me back herself and mapped out the differential diagnosis, recommended he go to the ER to have the necessary tests.
Today at the movies MM sat next to me and the smell of cancer wafted toward me again and again. I thought maybe it's something else, maybe it's not cancer. But it is, I've smelled it before. It is somewhat nauseating. I sleep with it every night. I pray for crazy things like a massive brain bleed. Yes I would like to order a fatal brain bleed for my husband, quick and fast please. It sounds crazy to a lay person, but probably not crazy to a nurse or a doctor who has had patients die brutal deaths, to wish for a peaceful drifting away rather than a struggle. I don't want my kids to see the struggle or the brutality. They already have, watching their Dad lose the ability to swallow and then get it back, lose the ability to create sensible sentences, get it back and lose it again. They have watched their Mom dress him, trim his fingernails, put his contacts in, take his contacts out, watched him refuse to get glasses. He put his oxygen tubing on backwards, so the oxygen flowed onto the back of his scalp instead of into his nose. I offered help. He slapped my hand and said "you know better than that." I remarked "your mama must've been a hand slapper," and left the room. Then I thought to myself "who cares about the oxygen," it doesn't matter. If he gets short of breath he'll sit up and ask for help. Some days he is grateful and sweet, thanking me for each bit of assistance. Other days he is critical and demanding. Everyday I am tired, trying to take the high road, sometimes missing the mark. I am grateful for Ishmael who comes in good cheer to be with MM each workday so I can go to work.
Monday, July 4, 2016
We have gone to Riverton every year for the Fourth of July since we married, except those years we were overseas.It is where MM's grandmother, Maude was raised. The original house burned down years ago. Maude and Willam built their retirement home in Riverton. MM's childhood summers were spent here. I wasn't certain we would be able to make it this year, nor was I certain he would understand if we couldn't. My packing was a disorganized mish mash with a few critical items: bathing suit, oxygen concentrator, MM's pill box, beach ball, living will, Do Not Resusicitate order, allergy and asthma medications for the kids, durable power of attorney.
Last night we arrived late. iMac and Butter found their cousins and were off for a game of manhunt. I brought the linens from home, Nemo and Thomas the Train. MM purchased them for Riverton along with the rickety bunk beds years ago. I couldn't remember which boy got Nemo and which got Thomas. MM recalled that iMac had always used the Nemo sheets. These are the details that blur in my mind. MM always remembers. He tucked in the corner of a fitted sheet on the top bunk. I realized this is the last time we will make these beds together. I started to cry. Since the tumors, radiation and seizures his remarks are now more than a little bit off. "I'm really going to miss you," he said. It almost made me laugh, but didn't. As if I was going on a long trip.