The Atheist and Loss of a Loved One via Death

     1 Thessalonians 4:13 "But I would not have you to be ignorant, brethren, concerning them which are asleep, that ye sorrow not, even as others which have no hope." KJV

I took the picture of the garden spider, altered it myself on my legally obtained digital photography software, and added the quote from Charles Bukowski. Yes, you may save it to your computer and upload it to any social media of your choosing. If you are a copyright monopolist troll, you are not welcome here so go mentally masturbate somewhere else. No love for you.

     I have hope. It is not formed from the quasi-expectation

 that I will be reunited with Dad in some grand heavenly 

scheme. My hope is not the feeling of certainty that 

accompanies many believers when confronted with the 

suffering and deaths of those near and dear to them.

     My hope is different than that.

     The author of First Thessalonians made an assumption. 

Those of us who are unbelievers mourn heavily in certain 

ways because we don't have the hope of reunion after death

 that Christians have. I have not found any good-enough 

evidence for survival after physical death. I prefer to live 

life as if this is it. Because for me, this is it. Life is 

fantastic. I have not found the need to insert any sort of 

divinity into the formulary.

     My hope is in the application of stem cell research to 

medicine. 

sapphoq on life says: In the course of his Lewy Body 

Dementia, Dad lost a lot. He lost his marriage, his career,

 his money, his friends. 

     It was a privilege to be with Dad during the last years of

his life. Although there were some difficult times, I would

not have missed being with Dad for the world. Dad died

knowing that his life mattered. He certainly made a

difference in my life.

     I lost one person to death. Dad lost everyone. 

RIP Dad; UN-dear E.R. doctor

sapphoq on life says: To the emergency room physician, no love. Dad indeed was dying when you saw him. He was dead within a week and a half, having gone peacefully and without pain thanks to the hospice that you didn't think he should be in. Hospice is not an easy decision for anyone to make. Dad wanted hospice and he signed himself up for their services. There comes a time in the life of a terminally ill human being that the burden imposed by continued medical treatment is very great. You had a lot of nerve trying to talk me into extending his life and insisting that he needed to be hospitalized for a possible bacterial infection that [as the lab results indicated] it turned out that my father didn't have. That "...do no harm" stuff wasn't written in to the Hippocratic Corpus for kicks. In my unasked for opinion, you are a bastard.



     After the unfortunate e.r. visit talked about in the last blog post, Dad went back to his assisted living facility. The hospice nurse and I struggled to get Dad into my car, then out of my car and into a wheelchair and up the ramp to his home. The emergency room physician who didn't think my dad should be in hospice would have had to sign off that an ambulance was needed to transport him back home.

     Dad spent the rest of that Sunday very weak and unable to stand up, never mind staggering around the house at will. On Monday morning, the hospice nurse noted an increase in congestion in his lungs but no signs of pneumonia. By Wednesday, Dad was very weak and bedridden. He had begun actively to die.

     I sat with him from last Wednesday through Christmas Eve about 8:42 p.m. (with private duty home health aides to fill in about four hours a day so I could have a bit of time off each day). Through Sunday, Dad was able to talk in hoarse whispers. He had long bouts of terminal restlessness. The hospice stopped his regular meds and ordered oral morphine gel and oral Ativan (tm) for pain and anxiety respectively.

     Because of a fluke in the law, the staff at the house are not allowed to administer meds unless the resident/ patient/ Dad was able to take it himself. Consequently, a family member or designee (the hired outside help) had to be there to do so. The house was also experiencing an outbreak of the flu. Although my mother's sister [Mom and Dad had been divorced for many years but Dad and my aunt had gotten very close during his time up here] and several members of my husband's family offered to take shifts with Dad so I could have time off, I was unable to take them up on their generous offers. This year's vaccine was found to be ineffective against this year's strain of the flu.

     I have an opinion. My opinion is that if a hospice patient is in an assisted-living home, the staff ought to be allowed to administer the meds when a hospice patient is no longer able to do so. Period. The law as it stands represented total fricking hardship to me. 

     Dad had the last rites administered on Thursday. When the priest said, "In the name of the Father and the Son and the Holy Spirit," Dad waved his arm across his chest in response. The hospice chaplain came several times during the week, something Dad appreciated. Staff people and residents started trickling in to say their goodbyes to Dad.

     By Sunday evening, Dad responded with facial expressions and bits of hoarse laughter-- if something I said was funny-- rather than with words. He was still able to move his hand away from over mine when he did not want to hold hands.

     By Monday, Dad was too tired to open his eyes. Mottling started up his legs but never did get to his knees. A swollen lymph node popped out on his neck. The house director told him "it is going to be okay" and he shook his head no.

     By Tuesday, there was veritable light show cascading along Dad's body. I watched as arms and chest and neck and face turned gray and white and blotchy in random [to me] sections.

     Christmas Eve Wednesday arrived and Dad was not scheduled to last past the afternoon, according to the best guesstimate of hospice. He did not experience any apnea until the very end. During the last three minutes of his life, he had a bit of apnea, then a few times where he breathed in but not out, a yawn, another breath in but not out, two yawns, two more breaths, and then a huge smile. Another breath in and Dad was done. Dad died holding my hand.

     I opened the window in a bow to an old Polish tradition [and because that seems to help the staff after a patient dies]. Phone calls were made. A hospice nurse came. I was really tired and went home. She called the undertaker and arranged for his corpse to be transferred.

   
     My Dad had Lewy Body Dementia for more than a decade, almost fifteen years. He struggled hard to keep functioning. He worked until he could not possibly work anymore and long past the age of retirement. He was always there for us kids. He never put a time limit on us when we needed him. I was honored to be there for Dad during his last week. Although the past several years presented many difficulties, hardship, and heartbreak for both of us, we also experienced as much joy as we could squeeze out of life. I wouldn't have missed the extra time I had with Dad during the last several years for the world.

Dad

     "I want to buy a car," Dad says. He is sprawled out on his easy chair at the assisted living house, barely able to keep his eyes open. He is tired. His color is ghastly-- like the color of rotting leaves after a heavy rain. I don't even know how he is still alive.

     "It's hard to get anywhere without a car," Dad says.

     I think to myself I don't blame him. If I could, I would have driven both of us out of his current life years ago.

     Dammit.

Tired

       He is tired. So tired. He closes his eyes and sings along with the choir that has come to entertain the old people. It is near the end of his life. He can feel that. Death has entered through the back door. She waits for him swishing her skirts. A breeze dances by. It tickles his sunken cheekbones. Not quite yet.

     After, he will accept a cup of punch thickened with powder so he can drink it without choking too much. He will refuse the offer of a cookie. His taste has changed. Food he used to enjoy now not so much.

     The shakiness of confusion is evident in his quiet voice. He turns to me and tells me that someone here at the home has stolen his wallet. This is a claim that he makes often. "The boss lady has your wallet in a safe so other people can't steal it," I remind him. He mutters something about social security checks. I know he is thinking about getting a part-time job and his own apartment. But he can no longer do those things. His past enjoyment and independence are now fading memories.

     "It's time for you to go now," he says gently. And I know he is tired. I take my leave, unsure as always as to whether or not he will be alive in a few more days.

                                     ~ sapphoq on life ~

Mirror

     Yes you can save it to somewhere on your computer and use it on the internet at will. Credit and link back not necessary. Oh, and copyright troll monopolists, bugger off.

     Headlights flash by on the front window. I cannot sleep. It is a cop car going after who or what I do not know. I shush the two year old cat whose name is Sirius Black the Cat, with apologies to J.K. Rowling. Although if she were to meet him, she would understand and nod in approval. Sirius continues to play with the free-form cement like object I found on a construction site under a bridge near some train tracks. It hangs from the curtain rod on a red string. He finds it irresistible.

     The housemate snores. The bedroom is too hot. Sirius has shifted to a pillow at the bottom of the bed. I stretch my legs. He bites one of my feet. Yeah, that hurts.

     I toss the blankets away. Still too hot. Aspirin substitute I think. I stagger out of the bed and through the living room. The vertigo is moderate. Whenever I first start walking after sleeping or not sleeping, my body is awkward. I am used to it by now. The world spins and bobs to the left. When I do fall, I fall to the right. A swallow of soda from a half-emptied can in the fridge. And so here I am.

     I am glad that the housemate buys cheap light bulbs. That used to infuriate me. Now with the increased light sensitivity-- pure photophobia the t.b.i. eye doc called it-- I celebrate dimness. And quiet. But there is hardly any quiet. I can hear people farting from a block away. Go figure.

     It does not take extraordinary sense to know that my father is dying. I'd gone to see him before dinner. He was slouched in his easy chair in the bedroom. Even on his death chair, he was plotting how he could go back to work. "The partial plate didn't cost me any money," he said. [It did. But his rep payee takes care of his bills now]. "I want to go back to work. Part-time. I think full-time would be too much for me to handle." I nod. A concession made to his deteriorating physical and cognitive condition. Part-time will have to do. I hate it when he does these things. He worries about money. All the time.

     "What would you do with the extra money?" I asked. He wants better quality clothing. He is a stick figure now. His shirt and pants hang off him like rags. I want to run away. Dad was always such a sharp dresser. Damn.

     After the visit, I drove to the gym. Burned up seven hundred calories on the treadmill. Punished my muscles for his pain.

     Before the visit, the hospice social worker called me to check in. "Are you wanting a visit?" she asked tentatively. She is young. New. I've only met her once. "I appreciate the phone calls," I told her. I am exhausted. I don't think I can show up for one more thing. It is too much.

     Everything is too much. Not sleeping. Dad dying. The noise. The lights. The irregular sleeping and not sleeping. Sirius playing and banging around. It is all too much.

                           ~ sapphoq on life

He says

Yes, you can take it, save it, and use it on the internet. I don't care.
Credit is already on the tag. Link back is not required.

     He stirs from his after lunch nap on the easy chair. He is frowning in his sleep. His mouth hangs open. I wait.

     He wakes up. "I'm getting weaker," he says. I say, "Yes." I've learned to allow him to talk about his illness and impending death. Anything other than simple agreement gets him riled up and then he says he doesn't want to talk about it.

     I wait.

     He traces his sunken cheekbones and his chin with the fingers of his left hand. "I'm losing more weight," he says. I nod and say, "Yes."

     He points in the direction of a newer housemate. "She stinks," he says matter-of-factly. "She will die first."

     "Saturday," he says. "My teeth are coming back Saturday." A staff person bounces over just then. "Tomorrow honey. You and I are going to the dentist tomorrow to get your partial plate." They exchange pleasantries. "I'm going home now for the day," she says. "You just got here," he laughs. And I know that he knows that she is part of the morning crew. "I worked the whole eight hours by myself," she tells me. I know that had to suck. One staffer with all these impaired older folks. Too many frail elderly people to look after.

     "Saturday?" he asks me. "My teeth are coming back Saturday?" "No, Dad. Tomorrow. Tomorrow is Tuesday." "Who is taking me?" I tell him the staffer who just left will be taking him. "Oh, okay. Have I had three meals yet today?" I realize that he is using breakfast, lunch, and dinner as markers for how long before nighttime. "You've had two meals today, Dad." He accepts this. "Saturday for my teeth?" he asks again. "Tomorrow," I reassure him. "Not Saturday."

     "I'm going upstairs for my afternoon nap," he says at last. "Be careful driving home."

                                   ~ sapphoq on life

"Death is a Medical Decision," said someone at the Veterans Administration

     "You have to call the V.A. and have their meat wagon come and pick him up. Or else you will charged for the cremation," said one friend who is a vet.

     "The Veterans Administration pays for all the funeral costs," said another vet friend.

     "Medicaid buried John 'for free.' " said a third [non-vet] friend. 
     "Was John a vet?"
     "No."


     I was stick-a-fork-in-me done. I called the area veterans hospital. "What do I do with my father's dead body after he dies?" I asked the operator. She transferred me to a department called DETAILS. I left a voice mail. No one returned my call. Ever. To date.

     I called the veterans hospital several days later. "I need the number for the county patient advocate for the vets," I told the operator. She transferred me to the patient advocacy office. The person who answered that phone did not know there was an advocate in this county. "Hold on." I was transferred back to the operator who originally had transferred me to the patient advocacy office. Neither the operator nor myself knew why I'd been transferred back to her.

     I called an acquaintance. "Here's the office of the aging's phone number. You can reach the local county patient advocate through them."

     I called the county office of the aging. The lady answering the phone didn't know what I was talking about.

     I called the veteran's administration hospital back. I asked for their patient advocate. She called me back within ten minutes. "Dad's receiving hospice services," I said. "How do I get him buried?" She interrupted me, "Death is a medical decision. You need to arrange all of that with the V.A. social worker in... ." Cripes! 

     The V.A. did not have a contract with the local hospice. I knew this because the local hospice people had told me that when Dad signed himself up for hospice. Ergo, I had figured that no veterans social worker in the county was needed to approve these arrangements. But the patient advocate at the hospital did not stop talking long enough for me to get that sentence out. I tried several times. I gave up.

     "The county V.A. social worker can be reached through the V.A. primary care office in the county," she finished finally. My eyes filled up with tears. I knew I would be losing it shortly. "You mean the one at the V.A. primary care doctor's office that never calls me back?" I asked. "I'll transfer you to the head of social work here at the hospital. She'll help you."

     I left a voice mail for the head of social work.

     I lost it. Totally. I could not control the tears. How could I have been so stupid not to know that death is a medical decision?!? I've lived my whole life not knowing that. Wow.

     I cried for my father. I cried for all of my frustration that I've had dealing with other people during the course of his Lewy Body Dementia. I cried for his life, for everything that he had lost because of his failing brain. I cried for his pain and mine. I gasped for air. Then I called information for the number of an area funeral home.

     The guy from information swore there was no such funeral home in the area. "Any funeral home," I told him. I started to cry again. I hung up. Not only was I clueless. So was almost everyone else I had managed to rouse up on the telephone. I began wondering if I would have to transport my dad's imminent corpse to the veterans hospital myself for cremation. I could't afford to pay for his funeral. Or, I'd have to take out a bank loan to do so.

     Overcome by hysteria, I called two friends from another state. They were able to find the phone number I needed and gave it to me.

     I called the funeral home. The owner answered the phone. He knew what to do. He'd done it before for other dead veterans. 


     Later, I discovered that my dad did indeed have enough money in his bank account to cover his funeral expenses. This was not because he had set aside this money. [His dementia had rendered him determined to give every penny of any money he had or received to an ex-wife who he believed-- and still believes-- is "starving."]. The money was there because he had become unable to manage his own checking account. He simply didn't know that the money existed.

     The funeral home owner called me back. "I will need your Dad's army discharge papers in order to have him buried at the national veterans cemetery." I took a deep breath before answering. "I don't have them. I told you his ex-wife took everything." But it turned out okay after all. The funeral home owner would contact the county veterans patient advocate to obtain a copy of the discharge papers.

     I stumbled into the bedroom and collapsed on the bed into a deep sleep. All of this pre-death mourning is exhausting. My dad has been sleeping more because he is dying soon. I've been sleeping more because I am emotionally spent.

sapphoq on life says: Professional people everywhere, when dealing with overwrought family members of dying dementia patients, I beg of you to please don't ever tell any of us "death is a medical decision." It just isn't. Really.

On The Wind

Death is on the wind by sapphoq 8/11/2014

"People come in here and people go out of here. Some of them die."

"Yes."

"Am I going to die soon?"

"What do you think?"

"Yes, that could be on the wind."

"I think so too. Are you afraid to die?"

"No."

[redacted]

"What's going to happen to me?"

"When you can't stay here safely, you're going to move to the  hospice."

"Okay."

"What comes next after the walker?"

"A wheelchair. But using a wheelchair is better than not being able
 to go places."

"Okay."


     Some years ago, Gloria Thomas put out a New Age album called, "When I Become The Wind." Her husband B.J. Thomas was featured on it along with some other folks. I could not find the lyrics to the title song on the web. I only found one site-- in New Zealand-- that still sells the album. I have the cassette tape.

     "When I Become the Wind" is about death. Unless you have the album yourself or are better at web searching than I am, you'll have to take my word for it. It is a haunting melody.

     During my own near death experience (triggered by fear and not by being close to dying), a wind knocked me back and I awoke. The idea of death being a wind or of us becoming wind after we die is not alien to me.

     Until the above conversation, I pictured Death at the backdoor and waiting for Dad to be ready to go. Now I think she is the wind that will free him from his physical body. After Death there is nothing. Just the wind whispering that Love Was Here.

                              ~ sapphoq on life ~