Acceptance

     I met with the sympathetic funeral director. Dad's death arrangements are now complete from my end. I even picked out what his stone will say.

     Dad is still alive. Barely. His color is cheesy. I figure that his liver will be shutting down soon. I'm no doc. I could be wrong about that.

     Dad does not stay awake for longer than a few minutes at a time now.

     "Your face is full of sunshine!" he told me when I went to see him [after the appointment with the funeral director]. He allows a bit more hand-holding these days. 

     I will miss Dad terribly when he dies and then for the rest of my life, however long or short that may be. 

                                                       ~ 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.

Gonna Drive Away

     A couple of days after the visit where we talked about death, I was greeted with this:

"I want to renew my driver's license."

[Yes, he still has one. I reported him. They re-tested him. He passed, slept with someone, or paid off a politician. Not sure which].

"Uh, maybe in the spring. Winter's coming."

"Okay."


     I can't blame him for wanting to escape all of this dying crap. I want to just drive away sometimes too.

     Through the course of his dementia, my hope has changed. Right now, it's "I hope he dies soon in his sleep before things get much worse."

     His hope has not changed. He wants to exercise his body back to the way it used to be. He wants his brain to power up. He wants his life the way it used to be. And I can't give him any of those things.

     My dreams take me on the trains traveling around the country-- something I haven't been able to do in awhile-- we really do have a great country. My dreams take me into the backwoods with only a backpack and an old dog. My dreams take me on a warm sunny beach someplace I have never been before. My dreams take me on a book tour for one of my books. [I've written one. Once that one gets put out in e-book form, it will be time to write book number two. I used to think that I had a book in me. Now I know I've got a bunch of them kicking around in there].

     His freedom is limited now. And there's absolutely nothing I can do about that.

                                  ~ sapphoq on life ~ 

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 ~

Lies

I took pictures and I altered them and I made this. Please right-click to download to your computer if you wish to save it and/or use it.

     I detest being lied to. There is no reason to lie to me about where you are when I call you. Hey, vacations are great. Long ones are wonderful. Where do you get off telling me that you can't talk because you are at work?

     The truth would have sufficed. I'm out with friends right now and I can't talk. Can you send me the info? Yeah, I would have understood that. Totally. I get that. 

     It's considered "rude" to take phone calls when entertaining. Even though a large percentage of people do it anyway, it is not cool. I tell people I need to call them back when I am with friends. So the truth would have been respected.

     Things are stressful enough when advocating for a dying parent. I visit several times a week. Until recently, I was transporting to doctor appointments. I watched as yet another mini-mental status was conducted. The results never improved. "I haven't seen her in eight months." I had no words to explain your absence. He loves us both. Now he is actively dying. Your lies roll off your tongue.

     This is not about you and it is not about me. We are losing one person. He is losing everyone. Take your drama and your lies elsewhere. I am burnt to a crisp.

                          ~ sapphoq on life