The Grief Edumacation Group

     Since Dad died, I haven't really felt any agonizing grief or deep holes within. I do miss him. I also understand that he was done for long before he actually died. The Lewy Body Dementia in his brain dictated that to be so.

     I did have a month or two where I did sleep a bit more than usual. Yeah, I also respected my needs to be alone or to socialize. I did need a bit more solitude and so I stuck to smaller gatherings rather than parties. I wasn't in a party mood and that was fine.

     Three months and a few days out. 

     I've been to the grief support group at the hospice that meets monthly. It's a small group throughout the winter but nice.

     I saw that hospice was offering a six-week once-a-week grief education group so I signed up. I was expecting education. But it really wasn't.

     The composition of the group is made up of several siblings who lost a parent, several spouses, the moderator, and me. Tears and tissue boxes. And the sentiment expressed was, "It's nice to be with people who understand."

     I think I was the only one not crying out of the bunch.

     And although I am not a separatist of any description, I did learn a couple of things. When my mother buried my step-father and didn't tell me until two weeks later, I experienced "disenfranchised grief." And every once in a while, thinking that I don't have to rush back to check on Dad, that's called "adjusting to not having a caregiver role anymore." It's nice to have the word labels.

     And I really do like the Grief Education Group, in spite of the fact of it being somewhat mis-named. Just as well really. Had it been named something else like "Early Grieving Support Group" I would not have signed up. I reluctantly admit that the group is helping me. I'm not in the same place or even close by as the other folks in the group are. Then again, I've been pegged before with the "marches to her own drum" so this should not be a surprise. I do feel miles away in terms of where my grief is compared to that of the others there. Also not a news flash.

     There are differences in belief systems-- I don't have one-- to be sure. That much is evident by what other folks there talk about. I don't make an issue of my non-belief out in public unless someone is trying to convert me or verbally attacks me or asks me about my religious practices outright. There has been no reason for me to self-identify as an atheist at the grief group so I haven't.

     The similarities. I am the youngest one there. But not by much. We all say yes to coffee or hot chocolate or tea. None of us have touched the food brought in for us. We all speak English. [I don't know if anyone speaks other languages or not like I do]. All of us have experienced the death of a loved one since December 2015. All of our loved ones died with hospice services and supports. We are all human beings. That will have to be enough.

     Life is incredible. And I love living.

sapphoq on life

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.

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.

     

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