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.

PartTwo: How Not to Act for Emergency Room Physicians

I didn't figure that I would have to write a Part 2 but as it turns out, I did have to after all. The only "redeeming" aspect of having to re-visit the subject is that the physician who inspired this piece of writing is not the same physician who inspired Part 1.

1.  Glance at the paperwork which declares patient to be receiving hospice services. Grumble.

2. Order and have completed four tests which involve a C-T scan, an x-ray, bloods, and urinalysis to be completed before family arrives.

3. Ask family if Old Man "has cancer." Tune out short explanation given by knowledgeable family member about the benefits of hospice for Old Man, even though you asked about the benefits. In fact, you admit to not knowing that hospice has a hospice in the same small town that the hospital is located in but hey, that does not matter. Tell family that Old Man "is not dying."

4. Admit to not knowing what Lewy Body Dementia is but tune out the short explanation given by knowledgeable family member [who admittedly is sick and tired of explaining the differences between L.B.D. and Alzheimer's to medical personnel].

5. Push for Old Man to be admitted to hospital as a non-hospice patient in order to aggressively treat something which has a low chance of being bacterial even though the full results from the lab will not be known for at least twenty-four hours.

6. After making your pitch, ask family if they will support this.

7. When family informs you that they are calling the hospice team first before supporting anything, present them with the telephone by slamming it on the top of the desk. [Family in fact did not need to use the hospital phone. Family comes equipped with freshly charged cell phones].

8. After family informs you that hospice is coming to the emergency room, try again to talk family into hospitalization and aggressive treatment. Tell family that if not, you will send home a script for a broad-spectrum antibiotic. [See #14].

9. Stomp around a bit. Come back into the room where patient is sleeping and say, "Hospice is not here yet. Are they coming?" Family responds in the affirmative. Leave the examination room. Mill about the nursing station.

10. Act annoyed when hospice in fact calls the emergency room and directly asks to speak to you. Tell hospice over the telephone that you-- an emergency room physician who have never even met Old Man before this emergency room visit-- think that Old Man should not be receiving hospice services.

11. When hospice shows up, tell hospice and family that the first and best option is to admit patient to hospital in order to aggressively treat the possible bacterial infection for which patient is non-symptomatic at this time. 

12. Demand to know if case manager is also a nurse. [The answer is yes].

13. Advise that the hospice case manager will have to call the lab to get the results so patient can be admitted to the hospital [in a day or two] in order to aggressively treat the supposed possible bacterial infection. Don't ask what the patient [who still has opinions about his health care in spite of his current health status] or the family may want to do about this situation.

14. Insist that the best option is to allow patient to be hospitalized right then and there. Allow as to the second option is discharge without any script for an antibiotic. [This results in the case manager having to contact Old Man's doctor for said script].

15. Waltz away with your huge false ego and awful bedside manner intact. During the whole time, do not say two words to Old Man. [Family and hospice know better than you do about patient dignity and therefore strive to include Old Man in the conversation whenever he is awake].

sapphoq on life says: Fortunately, not all physicians are like the two physicians that Old Man and family have encountered in the particular emergency room.
     Unfortunately, hospital does not have a written protocol for medical staff to follow when dealing with patients on hospice who arrive in emergency room. This leads to situations where the treatment encountered by a dying hospice patient will be extremely variable, depending upon the personal beliefs, philosophies, and attitudes of whatever emergency room physician happens to be on duty at the time. 
     All physicians ought to honor the choice that terminal patients have made to utilize hospice. Hospice allows patients to avoid over-treatment and aggressive treatments according to their wishes. I will be advocating for systems change in respect to hospitals in the state where Old Man lives and procedures for care of all hospice patients who have to utilize emergency room services for an acute medical emergency.
     

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.

This Morning, This Afternoon

     This morning, I took my old dog and her young companion who lives around the corner to the park by the river. They frolicked together in the fallen leaves as I picked up beer cans. (Fifty cents is fifty cents). The sky was cloudy but the air was fresh. I was comfortable in a sweatshirt and sweatpants. The grass was dry, not dewy. 

     I took pictures of them. I got annoyed later because I could not locate the mini-storage card holder I needed to copy the new pictures to the computer.


     This afternoon, I went to my mother-in-law's. She is old. She is moving to a daughter's house. She is having a difficult time letting go of stuff. I feel bad. It's like watching people divide up your possessions before you die. 

     I helped pack a few boxes. Two for housemate and three for his sister. I got annoyed because they were shouting at their mother in order to be heard. She is quite deaf and has never gotten used to her hearing aids. So she doesn't wear them. She is also losing her memory and repeats herself. I don't like the new color of the front door. Did you take the Homer? It's a chorus of repetition.


     This afternoon after leaving my mother-in-law's, I went to visit Dad. It was raining by then. But it still wasn't cold out. I was comfortable in my sweatshirt and sweatpants. I was thinking about how many words I had to write for NaNoWriMo later. The pumpkins at the adult assisted living had faces drawn on them with markers. One had pipe cleaners sticking out of the top, like stray wild hairs on an almost bald man or a scarecrow.

     "My voice is getting better," Dad said. I know he is thinking once again about finding a job and regaining his independence.

     "I want you and your sister to get to know each other," Dad said. I swallowed hard. "I want that too," I said.

     "I know that guy took my wallet," Dad said. "I almost had it back." I gently remind him that his wallet is downstairs in the safe. He ignores this. 

     Dad goes into coughing fits in-between the bits of news I offer him about the dog and my mother-in-law. He waves at me to stop talking until he can catch his breath. He sounds like he is almost choking. But it is not choking. It is the effects of the Lewy Body Dementia on his throat.

     We talk a bit more.

     "It's time for you to go," Dad said.

     I do. I forgot why I'd been annoyed earlier.

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

The Partial Plate Has Been Sent Away

     Dad went to the dentist the other day. He went to the first dentist who he no longer remembers but the entire office remembers Dad. That particular dentist had given his own personal home phone number to Dad during the last visit in case complications arose from the dental work done. [None had].

     The partial plate is now being repaired and should be back sometime "next week."

     Dad wants to go shopping once the plate is back and in his mouth. We used to go shopping a bit and I think Dad misses those days. Those days were a bit more carefree for him. He was able to walk after a fashion that did not resemble lurching. He inquired after the cars of strangers in the parking lots. He returned to his room with lots of candy. He wasn't actively dying then or receiving hospice.

     He is weaker now. I hope that I can take him shopping [if he lives]. He is so pale. He was always darker than I am and now he is pasty white. His fingers are so very cold to touch.

     I love my dad. I want his suffering to end.

sapphoq on life

Teeth

     My mother didn't "believe" in anesthesia for kids-- or at least for me-- when it came to doing any sort of dental work. Maybe I had four cavities. All of them were filled without long needles being inserted in my gums first. One baby tooth with massive roots was pulled the same way. The dental work must have hurt some but I don't remember that now. I remember noticing the body odor of a dental hygienist. To me, it smelled like pea soup.

     We changed dentists once. The new dentist was farther away and probably cheaper. I did learn from him that there were four types of saliva. They ranged in terms of protection from cavities. That was the kind of thing I was interested in as a child [and still]. Small factoids that not too many people knew. I collected them like I collect different sorts of rocks and feathers now.

     After I went to live with Dad, the time came for me to go to the dentist. It was a new dentist to me. A filling had to be repaired. Having never had any sort of pain duller before, the needle in the gum routine was new to me.

     "Can you feel this? Can you fill this?" The dentist leaned over me as he gently tapped the side of my cheek.

     "Yeah, I can feel it." 

     Ten minutes later. "Can you feel this? Can you fill this?"

     "Yeah," I growled. "I can feel that." Another needle went in.

     Ten more minutes. "Can you feel this now?"

     "Yeah."

     "I can't give you any more. I've given you enough to kill a horse."

     I was impressed.

     Twenty minutes after leaving the office, the numbing agent kicked in. I chewed up the inside of my mouth without knowing it.




     Seems like we forget that old people have teeth that need professional cleaning, partials that need tightening, and dentures that need more than soaking without any scrubbing. I remember one old lady at a nursing home I visited and the dentist there.

     " My-name-is-Vincent. I'm-a-dentist. I-want-to-see-your-teeth." he yelled.

     "But mister, I only have one tooth."




     Dad always took care of his teeth. But by time he got here, he had some teeth missing and a temporary partial plate. 

     He complained that the first dentist was too rough and blamed him for cracking a tooth.

     He complained that the second dentist's office assistant overcharged him for the new permanent partial. [She hadn't].

     He complained that he didn't have money and would have to find a dentist that took "time payments." He refused to go otherwise.

     Once the powers that be finally acknowledged that he should not be managing his own financial affairs, staff at the house lost interest in taking him to any dentist.

     When old people become slow and pokey and difficult to "transport," excuses are made. It's too late [in his life] to take him to a dentist. (He's dying). He needs the extra money to buy incontinence products. All of the dentist offices that I called the other day were closed. Do you suppose that a dentist could come here to see him??? [I'm not running the house. I don't give a damn about the mechanics of him seeing a dentist. I want his partial plate adjusted and possibly a professional teeth cleaning].


sapphoq on life says: I get it. I understand that brushing partials is "gross." I get that helping someone to brush teeth more thoroughly-- especially someone who is resistant to help-- is "not easy." I know that quite a few folks here prefer to let their own teeth rot out of their mouths rather than visit a dentist.
     What you are doing is still wrong. Meanwhile, I keep pushing to get this stuff done. 

Dementia Church

     "I want to see the old priest," Dad said. It was time for the abbreviated mass offered to Dad and his housemates.

     I helped him out of his chair and waited for his feet to be able to walk instead of repetitively tapping the floor due to pseudo-parkinsonian symptoms from the Lewy Body Dementia. Dad is now refusing to use his walker at all. [I suspect because he is determined to not need a wheelchair as long as possible and he knows that is the next piece of equipment after a walker]. Once he gets walking, he does not want any form of help. But that does not stop me from watching him like a hawk as he does ambulate anywhere in my presence.

     Once off the elevator, Dad waited in the doorway until the old priest was done reading from the gospel. It was the story about Jesus telling folks to "love your enemy" and if the enemy steals stuff from you, to give them more stuff. [Matthew 5:43-48]. I tried to steer Dad to a chair but he was having none of it. Then I just stood there behind him bracing myself in case he fell. He didn't.

     The old priest stopped reading. Dad indicated that I should sit in one chair and he sat in another.

     "You want your [regular] chair?" one old lady asked Dad.
     "No."

     The old priest began expounding on the verses he had read. It was the anniversary of 9/11. So he talked about the bombings and Al Queda. And he threw in be-headings and ISIS. 

     "Jesus commands us to love Al Queda. And ISIS." the old priest said. 

     I was fairly certain that Jesus wasn't commanding any such thing but I shut my mouth. The old people-- the seven old ladies and my dad-- said nothing. Who knew how much of his message they were catching. None of it, I hoped.

     "No one records our prayer. But we can change people by praying for them. We just don't know the results. Here and there one [terrorist] gets changed."

     I started diagnosing the priest with several forms of insanity.

     "Why would Jesus tell us to love those people?" the old priest asked.

     No one hazarded a guess.

     The old priest went on in a similar vein for the next ten minutes about the bombings and terrorists and be-headings and The Islamic State. The old people directed their faces towards the old priest vacantly. 

     He sputtered and stopped. "Did you get that?" he asked my dad.

     "Yeah," Dad said. I was sure he didn't. If he had, he would have argued with the old priest.

     The old priest said a few more of the Catholic call-and-response prayers. One old lady knew the "Lord have mercy" thing. Dad tried.

     The old priest started a rendition of the Our Father. "This prayer is how we get along," he explained.

     Most of the old people, including Dad, knew the Lord's Prayer. The Roman Catholics cut it short. One Protestant lady said the rest of it, smiling mischievously as she did so. 

     "The Mass is ended. Go in peace," the old priest intoned. 
     "And you too, Father," Dad said.

     The Protestant lady reached forward and touched the back of the old priest's white robe. She winked when she saw that I was watching. I smiled back.

     "Jesus wore sandals. So I do too," said the old priest as he took off the garment to reveal his black shirt, black pants, and black socks. The sandals were brownish.

     The old people thanked the old priest profusely for showing up and rendering the brief Mass. He helped my dad out of the chair. 

     "I'm going to a better place," said the man that didn't want to ever talk about death. "Some people go to the bad place. But I'm going to the good place." [Dad seems to have gotten "saved" a couple of years ago].

     "Right now, you're going to the dining room," the old priest teased him gently.

     A late arrival waltzed into the sitting room. "Did I miss it?" she asked.

     "You have to get the staff to call you for the Mass," the old priest responded.

     "I'm going to give them what-for."

     "I thought about being a priest when I was younger," Dad remarked.

     "But then you were thinking about your daughter."

     [Actually, Dad discovered girls and any thoughts of entering the priesthood abandoned him promptly].

     "I love men. All men." This from the late arrival. "And he is precious," she added, indicating my dad.

     "I wish I could feel precious," the priest said.

     "You're precious too." The late arrival was a flirt. "I'll make you feel precious."

     The old priest laughed. "I wish I could feel precious before I come here."

     "I'll make you feel precious," she repeated.

     The old priest exited.

     "Let's go to the porch," Dad said. We walked and lurched over to the front door. We stood and talked about the squirrels.

     "I've fed the squirrels here," Dad told me. 

     "I put out peanuts in the shell yesterday and every blue jay in the neighborhood showed up and took them away one by one!" I told him.

     "I have to go to the bathroom. You better go. Drive carefully!"

     Dad and I hugged.

     For once, I was happy that the dementia protected his brain from the ramblings of the old priest. Some things truly aren't worth preserving in the memory.

     Later, I sought out my Oathkeeper friend. "I would have raised my hand and told the priest that I will love the terrorists to the ground," he re-assured me.

     "Thank-you," I said. "That really helps."



     



     

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

         

Plan B

     The hospice social worker and I were sitting with my dad recently. Applications had to be filled out just in case. Just in case Dad doesn't die soon in his sleep. Just in case he needs to be moved to the hospice itself. [He is already receiving hospice services]. Just in case he gets worse.

     Lewy Body Dementia is different from Alzheimer's in that there is no staging with L.B.D. Any of the symptoms in LBD can occur at any time during the disease. [The symptoms of Alzheimer's are more clearly tied to stages]. As a layperson, I understand about as well as can be expected. As my father's adult child, there are days when I want to scream at the world in frustration.

     Getting someone from the V.A. to call me back about arrangements after Dad dies has been impossible so far. No one has called me back. Whether I am supposed to contact a funeral parlor after he dies or call the Veteran's Administration to come and pick up his corpse, there are certain things that I need to know. Things like this make me want to scream. Losing a parent is painful. Not knowing how things are supposed to work immediately after his death is irritating as all get out. Not being able to speak with a human being at the VA hospital is rage-inducing.

     My dad has the true pain. I recognize this. As difficult as it has been for me to bear witness to his struggles, my dad has lost pretty near everything to his form of dementia. He lost a marriage, a livelihood, money in the bank. He lost friends, his standing in the community where he lived for so many years, his ability to maneuver safely throughout his environment. Although logical thinking is difficult for him and at times impossible, he continues to demonstrate that he has desires, wishes, and dreams. These things have changed within the past fifteen years or so that he has had this thing, but he does have them.

     For a time, I did not recognize my father in the fog that his dementia intermittently brings. Now I do. Some parts of his personality have been warped or accentuated by his neurology. But my dad is very much "in there" still.

     Having once been confronted by the extreme focus on self that I had to have during the first several years after the motor vehicle accident which induced my traumatic brain injury, I had to confront the extreme focus on self that people in general with dementias-- and my dad in particular-- engage in as a survival mechanism. Mine mitigated somewhat. Although the t.b.i. literally changed some of my preferences, I still very clearly knew and do know who I am. Dad is not so fortunate. When dementia is non-reversible, the self is intensely threatened. Focusing on the self is a healthy and reasonable response when neurology goes amiss. I say that his neurology has gone haywire. I suspect that his brain is rotting. Dad says his brain is failing.

     My father is actively engaged in dying. As grief-stricken [and worn out] as I am, I continue to keep up front the idea that I am losing one person but my dad is losing everyone. When I was younger, he rescued me from a bad situation. I didn't suspect then that someday it would be my turn to rescue him. I cannot save the fractured relationships that exploded during his disease process. I can advocate for him to be as comfortable as possible during whatever life he has left. I hope to give him a "good" death.

     In the midst of the paperwork routine, the social worker indicated that Dad needs to know why this stuff was being done. "I don't want to tell him," I said. But then I did.

     "The hospice house is beautiful," I explained. "You will have your own bedroom, your own patio, and a private bathroom. And there are gardens too."

     Dad stared at me. I tried again.

     "It's a plan B. In case you get worse. It's much better than a nursing home."

     "You mean like at the end?" he questioned me. 

     "Yes."

     "Okay." And that was that.

     "Maybe you won't have to move," I continued. "But if you do in the future, this is something we have to set up now."

     "As long as the [present] house director comes to visit me, I agree to go." He smiled.

     Dad was happy at the thought of his own bathroom. He was not impressed by the promise that the cooks will make him whatever he wants to eat at any time.

     "Pasta fazul!" I said. 

     "You like pasta e fagioli?" the social worker asked.

     "I sure do," Dad told her.

     "And chili too," I added.

sapphoq on life says: You gotta have a Plan B. Period.

     

Pools

     One aunt and uncle had a couple of kids and a pool. It was a large above-the-ground in a square shape with a deck. The pool itself was surrounded by long timbers on the outside. I've never seen one like it before or since but I suppose other folks probably had one like it.

     They also had beds of flowers surrounded the house. I liked the pansies especially. "They seemed to be such happy flowers"-- a phrase I must have heard somewhere. I didn't think that then but it's what comes to mind now.

     Their downstairs bathroom also had fish wallpaper and a couple of fish figures on the walls.

     Later, the pool was traded out for an in-ground of the same size, shape, and depth. I preferred the old pool but never said so. Aunt and uncle seemed rather proud of the new one so I said nothing.

     I learned how to swim in a big army pool in the southern part of North Carolina. We'd gone visiting and a day at the base was a treat! I was never afraid of the water that I remember. I always could float well and swimming involved adding arm and leg movements to what I could already do.

     I was exposed to a pool at a Y during gym class in elementary school. We were bused there. I hated that. The locker rooms were not private enough. The kids were too loud. The instructor decided that I needed to learn how to breathe after every stroke of the front crawl rather than after every five or six stroked when I needed to. Because of that, I was put into the "beginner" swimmer class instead of into the more advanced class where my other classmates went and where I truly belonged. I was overly quiet and didn't advocate for myself then. Loud tears at the least, or a screaming tantrum may have gotten my message across better than my whispered short protest. My swimming did not improve during that class. I already knew how to do all sorts of things in the water contrary to what the Y staff thought. 

     Dad preferred apartment living to renting part or all of a house. [Later, he preferred owning a condo]. One of the apartments had a pool in the back. We had lots of fun there in the summer. Once my mother refused to let me take a bathing suit along. I don't know why. Dad allowed me to swim in my clothing [blue laws meant that swimsuits could not be purchased on Sundays] which was then washed and dried before I went back to my mother's. 

     At the apartment pool, I swam, floated, jumped or dove off the board, swam underwater, and perfected my side strokes. [I can swim on either side equally well]. I also learned to do headstands in the water. When not in the pool, we played Rummy 500. 

     Dad saved a little boy from drowning in the shallow section of the pool once. Even the lifeguard did not see that the toddler was in trouble. I learned that choking can be very quiet.

     Dad's days enjoying pools, lakes, and the ocean are over. His card-playing is over now too. When asked if he wanted to play Rummy 500, he shook his head and in a rare act of vulnerability acknowledged that the game would be too difficult for him now.

     Dad admitted recently to no longer being able to "keep up." 

     Dementia sucks.

                    sapphoq on life

First Grade

     I was in first grade when Dad showed me some Mexican jumping beans. "There's a small worm inside," he said. We also experimented with magnets. He explained about the north and south pole. There were little magnets and one larger one that had a red handle. There was a cellophane-like "fish" that would rise up from the counter as you stroked it, "face" first to tale. And a white furry critter that did the same. There was also fun with balloons. "Static electricity," he told me as we rubbed them on our pants legs and then stuck them to the wall. We also made static by scuffing across the rug as we walked.

     I went outside once to play with some neighborhood kids. I didn't know them well. They started fighting with acorns. They flung them at each other across the driveway. I didn't like that. I was afraid of getting hurt by the sharp acorn points. So I went back inside.

     Dad has been forgetting more and more about the old stuff. He struggles to recall how old he is. He no longer knows the town he lives in. His brain is stumbling over newer memories. He remembers things from four days back [usually, after a fashion] but not three days back. And certainly not what he had for breakfast.

     Dad's veins in his hands are shriveling. His bones are very prominent, almost skeletal. Even his coloring is off. What used to be a rich olive complexion is now rancid.

     Some days he is aware that he is dying. On other days, I find him planning his escape into a new job, new apartment, old relationship. He can be quite adamant about some land that he thinks he still owns [which was sold off years ago] which he thinks will yield him about three or four thousand dollars to start over. During one of my visits last week, he complained to me vigorously that he had wasted his time by signing up to live [in the adult home]. Today, he was content that a relative had paid him a surprise visit on Friday [but he denied having the visitor return on Saturday].

     A staffer had stopped in today with two little ones in tow. Dad was delighted to see them-- he loves babies-- but they were not delighted to see any of the old folks there. The older one who I took to be around pre-school age hid behind her mother's legs and insisted that she wanted to go say hello to the people in the kitchen only. The toddler demanded carrying and turned her face away from Dad and his housemates.

     Dad insisted upon walking me out. He doesn't walk so much as stagger around. With me holding his hand and a staffer spotting him from behind, he managed an awkward lurch to the front door. He is receiving hospice now. Death is at the back door quietly waiting for him to be done with life. I will miss him forever after he dies.

     ~ sapphoq on life

Silk Flowers

     Dad had to go on a business trip or something, I don't quite remember now. He had a layover in Atlanta and found some silk flowers in one of the gift shops at the airport. 

     They were shades of blue and pink. I loved them and treasured them.

sapphoq on life

Cookies

"You're a frig!" she yelled at the frightened and withdrawn child. "You make me sick."
The child knew at a young age that 'frig' was her mother's word for 'f*ck'. And the word 'f*ck' was one of the worst swear words ever. The child did not understand how she could make her mother sick. 

Sometimes on a Saturday, we made cookies.

"Where were you?" she screamed at the teen. "I was worried sick about you!" Curses followed in a rapid-fire linear equation.
"I told you the school fair was today after school."
"No. You. Did. Not."
The teen held out a cheap trinket that some teacher had suggested she purchase for her mother.
All smiles then.

They were sugar cookies. With icing.

"Go downstairs and apologize to [step-father]. [Step-father] does not remember last night."
The teen stared at her mother from her bed.
"No. I will not apologize. He may not remember but I know that you do. I did nothing wrong."
The teen pretended to go back to sleep. 
"Come live with me," her dad said when he called her later that day.
She moved out shortly after that.

Dad didn't make cookies with me. But he didn't beat me up or curse at me or call me bad names either.

How NOT TO Act: for Emergency Room Physicians

1.  On old man's first emergency room visit of the weekend-- on Friday morning-- give him a mild over-the-counter non-aspirin "pain reliever" for excruciating lower left quadrant back pain after running a ton of blood work [all negative].

2.  Only prescribe an effective agent for pain relief after old man's adult child appears in the emergency room and insists on something stronger.

3.  Diagnosis: back spasm. Illustrate this by grabbing that part of the back suddenly. Ignore the discomfort of the old man while doing so.

4.  On old man's second emergency room visit of the weekend-- on Saturday morning-- insist that the prescription given yesterday will work.

5.  Order a C-T Scan "just in case". [negative]. Oxygen level: 88. Ignore the implications of that and give oxygen until the old man leaves the emergency room.

6.  Advise the adult child to "pretend to be stupid" and lie to the trusted family doctor in order to get him to order physical therapy with ultrasound treatments for the misbehaving muscle.

7.  Diagnosis: back spasm "but really more of a back pain." Ignore the protests of the adult child and the nurses who think there is something more going on.

8.  On old man's third emergency room visit of the weekend-- on Sunday night after he was found on the floor [because he fell]-- insist that his back AND neck pain is from the misbehaving back muscle, left lower quadrant.

9.  Send him home. Nothing much wrong here. Diagnosis: back spasm/ back pain.

Note to idiotic physician: Had you LISTENED TO HIS CHEST with a steth, you might have discovered the pneumonia which the family doctor was able to diagnose on Tuesday without grabbing the old man's back and causing him more pain.

The pneumonia was spreading to the other lung by Tuesday and required two antibiotics to treat.

Grade: FAIL. 

Drying Out

     The second time around, my mother found a drinking partner and married him. Their drinking was not the usual. They got blasted off-the-wall drunk. 

     The family doctor was an alcoholic too. When my step-grandfather died, the doc showed up at the funeral home drunk. Very drunk. And the family said, "Oh he's drunk. Look how much he [the doctor] loved him [dead step-grandfather]."

     It came to pass that my step-father needed a few days in the hospital in order to dry out. In those days, people were not admitted for alcohol withdrawal. The alcoholic family doctor arranged for my step-father's hospitalization under the guise of "heart problems." Step-father dried out and returned home to continue drinking in the manner that he had been drinking. Being an active drunk himself, the family doctor thought this was just fine.

     Years later in a classroom, I asked "An alcoholic can go to the hospital, dry out, and then drink again?" That was the first time that I was told that an alcoholic cannot drink safely.

sapphoq on life

Cracked Ribs

It had snowed. I was in kindergarten. Dad picked me up [he was living in his own apartment then-- the folks had gotten divorced]. I remember a hill and a toboggan. Dad was laying on it. "Jump on," he said. I remember the toboggan starting down the hill. I jumped on. We went down the hill.

I was a thin little mite. Even so, I had succeeded in cracking several of his ribs. Things were a bit painful for Dad for awhile. Coughing. Breathing. Laughing.

sapphoq on life says: It's not the weight we throw around. It's how we throw around our weight.

Repetition

     Dad has been repeating himself for awhile now. Housemate's mum has just started. For a few months, she would play catch-up with conversations. A few minutes after a group of us was done discussing something, she would bring up the same thing using some of the same words. Within the last month, she has started repeating a question or a sentence several times within five minutes. Then she would act surprised that she'd already told us.

     An example:
          "My sister called me. She said she fell and sprained an ankle."
     This would be discussed. A few minutes later:
          "My sister called me. She said she fell and sprained an ankle."
     And a few more minutes later:
          "My sister called me. She said she fell and sprained an ankle."



     My dad and housemate's mum have never really cared for each other. I could imagine a conversation between the two of them.

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"


     The verdict is not in on housemate's mum yet. But the eerie repetition sounds strikingly familiar to me.

     It is not the long-term memory that suffers in dementia. It is the short-term memory, followed by an inability to create new memories. Thus, many folks with some form of dementia can tell you about their childhood but not remember what they had for breakfast.


     Dad told me the other day that soon he will not be able to talk at all anymore. His expressive aphasia has certainly gotten worse in my unprofessional unasked for opinion.

     
     Dad did not prepare me for his dementia. I suppose dementia is something that is subject to lots and lots of denial aided and abetted by any lesions that happen upon the left side of the brain.

     Dementia sucks. Don't you doubt that for a minute.

sapphoq on life

No Gods to Save Him

   Dad always remembered my birthdays. If it was on a school day, he'd drop off a big cake during lunch time. He also sent singing telegrams-- the kind sent over the phone-- to me. I knew that I was always being thought about.

     Every year around the time of Dad's birthday, I wonder. Will he die within the next three months? And every year he doesn't die, the Lewey bodies continue their relentless assault on his brain. His hips get weaker, his saliva gets thicker, he loses more of his thinking abilities. He doesn't even want to watch his television anymore. I thought it was because he thinks his cable bill is around seventy five dollars. [It isn't. It's about five dollars]. Housemate says Dad can't follow the news or the stories and so he has given that up. I figure the housemate has the right of it. Dad's recognition of my housemate has gotten dodgy. 

     Dad attends church services offered to the folks in the adult living house he is in. He likes to sing. He insists upon "Amazing Grace" and "God Bless America."

     But whatever gods are blessing America, they aren't blessing my father. There are no supernatural or preternatural miracles waiting in the wings to swoop up Dad and restore him to good health. There is the sameness of each day, the spiraling and irregular progression of his dementia, the narrowing of his world. The days when he knows what is happening to him and the days when he doesn't all run into each other in one ruinous blur.

     So believers, do your best. Storm the heavens. Intercede and argue with whatever gods you subscribe to. Whether you call your sense of divinity Jesus, Allah, Kali, or any of the little gods and goddesses of old. It does not matter. Dad has been condemned without a trial. He will deteriorate and then he will die. I will cry. Some of the family will argue afterwards. Some won't. Ultimately, the results are the same. 

     There are no miracles. There is only this: We are all of us truly alone in our own skins. Absolutely nothing can permanently alter that.

~ sapphoq on life

No More

Valentine's Day was always special with Dad. He would buy us each a card, a box of chocolates and a tiny whimsical stuffed animal.

We visited Dad on Friday at his adult living home. He was sitting on the couch next to a woman who used to be his sworn enemy just months ago. The two of them were talking and laughing. 

"He's having an off day," the house manager indicated to us as we sat down. I noted that Dad had paired a fancy dress shirt with his flannel pajama bottoms. The socks matched, I will say that. Dad had a glass of wine in one hand. He asked us how the drive was from Florida!

The medication woman came around. "No," Dad said. "I'm not taking that." She tried her best to talk him into it. But Dad was steadfast. After she went away, Dad turned to me and said softly, "They're not helping. I'm not taking them anymore." 


sapphoq on life

Loss

     In his younger days, back before I was thought of, Dad was into motorcycles and motocross. He liked riding around with some buddies. He liked racing and he was good at it. I don't remember him ever riding a motorcycle. I knew he had no problems on the little mopeds in Bermuda. And I knew that he had gotten an International Driver's License. So I was surprised to find out [when watching motocross on television together one day] that he was into motocross. He was also in an organization of motorcyclists. The club had its own tracks to ride around on [in preparation for motocross races? I don't really know]. And the guys did go ramming around together on weekends to various dances and things. 

    I knew that Dad was good at dancing. He had been a dance studio instructor [before I was born I think] at one time for Arthur Murray Studios. Dad taught me how to dance some waltzes and swings in a large room in a club. I don't remember the name of the place now-- just that it was on the second floor of a very large building with big windows overlooking some water. Dad kept telling me that the guy was supposed to lead. That was something that I finally learned with difficulty. But dancing with Dad was great fun. I had and have a natural rhythm at it and am good enough for someone who is not a professional. I pick up dances easily. One of my most treasured memories was dancing with my father at my wedding.

     Dad and his wives entered and won dance contests at various clubs and cruises. He was that good. I was proud of that. I would have liked to have known Dad in his motorcycle days but I didn't. He did take me to some car races as a kid. I prefer things like tractor pulls and cars smashing into each other on a track to a straight race.

      Shortly after arriving at assisted living, Dad did teach a few of the old folks living with him some dance steps. His most successful pupil was a woman who had a bum leg. With his encouragement, she was soon dancing in spite of her leg.

     All of those things are gone now. Dad cannot drive. And the Lewey Body Dementia has now progressed to the point where ambulation is difficult and dancing is impossible.

sapphoq on life says: Appreciate what you and others can do today. None of us know when those abilities will be gone.