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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, February 2015 (1 story)

Story 1. Received: February 9, 2015

In his early 80s, my Father was first diagnosed with a "benign tremor." My Dad was an active outdoorsman, and always in great shape. He was even-tempered, a kind man with traditional values. During his last "good" physical in his late 70s, Dad was told he had the general health of a 40 year old man. Yet a few years later, his regular GP noticed tell-tale signs of Parkinson's, especially his expressionless "flat face" and his statue-like lack of movement as he sat. A separate neurologist diagnosed him with Parkinson's.

He was now retired, so too many intellectual demands weren't put on him. But I (his youngest son) noticed how he would get lost and confused, as he gave his opinion on something. I would often finish his commentaries for him, in an attempt to help him express himself. His voice would also become hoarse, or fade away... the more he spoke.

I'm a middle-aged man, who lived with both of my parents for several years, in a symbiotic help relationship. Due to an extreme debt, they helped me to live rent-free, and I in turn cared for their needs... driving, shopping, cooking, or anything very physical.

His dementia (Lewy body, I assume... from reading how this dementia manifests), seemed to kick in a few years after the Parkinson's was diagnosed. He was very restless in bed, thrashing and acting out his dreams. Mom had to find another bed to sleep in. He started to fall down more and more. His driving seemed more erratic, so we decided he couldn't drive anymore. He was a mechanic and technician, but now the easiest things became confusing... like where to pour gas into a lawn mower. He would start something mechanical, but quickly get too confused to finish it... certain things he had done for years.

My oldest brother, his son, had terminal cancer and he came home to die. We sat at his bedside, as he passed away ... looking like a skeletal prisoner from Auschwitz. Dad had mild dementia at this time, but the witnessed event hurt him deeply. Now we wondered if depression was adding to his dementia. He went on a variety of meds, like Carbidopa Levodopa, Aricept, and an antidepressant. His decline continued.

One day while I was at work, my Mother called the restaurant I managed. She told me that neighbors found my Dad by the road, stuck in a bush... and naked. She was in the bathroom for several minutes, and I believe he went outside to relieve himself. The neighbors called an ambulance, and I left work to go see Dad at the hospital. He was okay. We now realized that Dad needed a visiting nurse, while I was at work.

More stresses were to come. Mom needed open heart surgery, to replace a heart valve. As a caretaker, she would be rendered useless. Dad fell down in the bathroom, in the middle of the night... and broke his rib. Dad was also diagnosed with Atrial Fibrillation, and was on meds for his heart rhythm. Dad needed around-the-clock care, but the nursing organization couldn't provide it. To hire a caretaker would be extremely costly. So I quit my job to stay with Dad when the nurses couldn't. I had experience in special needs group homes, I knew much about such care. My expenses would be covered by Dad's pension money, since I came much cheaper than any home companion or visiting nurse.

Dad's language skills declined. He would often stare at other people in the living room, instead of watching TV. Yet he was still mild to moderate on the dementia scale. Mom survived her surgery, and after rehab she came home to recover. Dad seemed to not understand what was going on around him, but he cried profusely the night his wife returned home.

A few weeks later, another blow... while Dad's nurse was with him, his left side went weak. He seemed paralyzed on one side, and was unresponsive for awhile. He had an obvious stroke. I had him admitted to a Hospital, and they confirmed that he had a stroke. After a few days, he was weakly using his left side again. He answered questions. He was sent to a rehab nursing home, where they would give him physical therapy. Dad complained of the night nurses and said they were rough. But Dad was very confused as well. Dad's room-mate, a fellow Marine, told me that he found Dad on the floor one night (this man had cancer, and wasn't senile). The night nurses put him back in bed, but seemed to cover up the incident... no incident report. I was steaming mad and chewed out the administrators. They stuck to their guns, insisting that my Father's room-mate was wrong. Dad spent a few more weeks there, and I was with him every day. The rest of his stay at rehab was uneventful, and his walking greatly improved.

Dad's behavior worsened. At the nursing home, buzzing for a nurse became a waiting game. Wanting the bathroom was a wait, and using the bathroom a big ordeal. This angered Dad a great deal, and he started swearing and behaving in atypical ways (some of which could also be due to the stroke).

After bringing Dad home, a very hard time ensued. Dad was now on "Hospice care" with the visiting nurses. Come sundown, Dad often became delusional. He thought we were on a boat, that kept rocking. He thought objects on the floor were snakes. He thought the house was on fire. He would go to bed, and sleep for maybe an hour, then wake up. Agitated and angry, he would want to wander the house... and I never let him walk anywhere alone. He became angry at me, and I debated angrily with him... thinking my "old Dad" was still in there, and that he would respond to my arguments. My "logic" would win out. Soon I realized, that behaving as I was made everything worse. Dad's agitation and insomnia continued. Dad was prescribed an "as needed" dose of sedatives. These helped the situation, and my calmer and more professional reactions helped further. Soon Dad established a night-time sleeping pattern again.

Now things were unpredictable. Dad had good days, and bad days. He could have almost normal conversations on some days, sounding like the father I always knew. On other days, he was confused, anxious, or crying. I gave him a sedative whenever he seemed to have an anxiety attack. His walking was okay, with a walker. I would spot him. He ate and drank okay, with very little coughing. I ground up any meat he ate. He would get constipated, however... and I would often "help" his feces fully emerge from his rectum... much to his displeasure.

Although Dad ate and drank well, each month he became a bit thinner. But his moods stabilized, with a comfortable daily routine. His Insomnia was gone. His bed had rails, and bed alarms... should he try to get up. And with each passing month, he talked less. He slept more. Sometimes he hated being driven somewhere, sometimes he didn't. He seemed to enjoy sitting in the yard with me, watching the birds and squirrels.

Dad started having mysterious rashes, on his chest, inside his arms, and inside his thighs. They looked like hives... raised red welts. Benadryl seemed to calm down the outbreaks. I also noticed that dad would have certain parts of his body feel hot, like some odd localized fever.

With Dad's moods stabilized, things went smoothly. The only time I ever left the house is when Dad's visiting nurses were with him. He smiled a lot and seemed to take pleasure in things. I bought him a foam dart gun, and he would shoot at empty soda bottles (with hand over hand help, of course). He enjoyed listening to old time folk music, like the Kingston Trio. He took pleasure in holding hands, and I would hold his hand for long intervals of time. He became childlike. On occasion, he might ask to go home, and I would remind him that he was home. On Thanksgiving, he independently polished off a loaded plate... Turkey and several side dishes. Dad's walking was less coordinated, and I pretty much supported him as he walked. Come December, he became lucid for a short time, and would say things that broke my heart. Once he said, "My future is dim." I told him it wasn't, because he was home with his family. He did seem to enjoy Christmas, and smiled at all the relatives. He even called his great grandson by name.

Come early January, I placed Dad on the toilet and sat next to him, on the bathtub edge. He looked at me with a loving gaze and grin, and took my hand. He then said "good... good." I wasn't sure what was good, or if he was thanking me. But come a week later, Dad was sick. His subtle, loose cough was worse. He had a high fever and night sweats. His visiting nurse listened to his lungs, and she said he had pneumonia. I knew pneumonia was the number one killer, of elderly people with Parkinson's or other health issues. Despite being on Hospice, we got Dad an antibiotic. His quality of life wasn't horrible, and we wanted to give him an opportunity to beat the illness.

I set a humidifier by him in his room. I gave him large amounts of thickened Pedialyte and Gatoraide to drink, and Ensure plus became his meals. His intake was good. His cough was weak, and I knew this was dire. I also knew if I wanted more aggressive treatment, I would have to take him off Hospice and get him to the hospital. But I also promised Dad to keep him "home." Since Dad seemed to continually break his fever, I was optimistic.

Two nights later (on a Saturday night), he had a phlegmy gurgle as he breathed. I called my niece, a Hospice nurse, and asked her what the best position was to allow Dad to breath freely. She suggested his left side. She then suggested that Dad could be having "terminal secretions" ... something I did NOT want to hear. She came over, believed he was having secretions, and arranged for us to get an emergency prescription that weekend... of morphine, and some behind-the-ear patch that minimized secretions. My mother and I STILL didn't give up hope.

On very small amounts of Morphine, Dad didn't drink much thickened fluid that Sunday. I positioned him on his left side, so that his face hung over the warm steam of his humidifier. Come evening, I took a finger tip reading, and his temp. His blood oxygen was great! His pulse was good. His temp was almost normal! Excited, I gave Dad a thickened cup of Ensure, and Pedialyte. He swallowed with some difficulty. When I left him to sleep on his left side, he had that subtle gurgle back.

I cooked my Mom and myself a quick meal, and we ate feeling elated. I still had hope. When I checked back on him, about half an hour later, I noticed that Dad's breathing was more labored. The gurgle was worse. My elation quickly went to despair. I sat him up and asked him to cough... and after he weakly coughed a few times, a very juicy sounding cough, now he was in distress!! It seemed like he was chocking to death! His body jerked, as he tried to breathe. I had my Mom call my niece again to quickly come over. We didn't have a suction machine or anything like that. I tried turning him to his other side... it didn't help. I tried swabbing the back of his mouth. No good. I found a flexible tube and thought I could somehow suction his throat... but that didn't work. Finally, I leaned him way over the left side of the bed, over the humidifier... and fluid and mucus oozed out of his nose and mouth. Finally, he could breathe. But the incident was traumatic. His respiration rate was high, and his blood oxygen reading was much lower. I became so angry with myself... for giving him the damn Ensure milkshake... for leaving him alone for that half hour... for having him cough. He was BETTER, and I had to shake the apple cart. My niece arrived, and calmed Dad down with some more Morphine and sedative. His breathing returned to almost a normal rate.

Come Monday, Dad's breathing was labored. The nurses agreed, Dad was dying. His fever was a yo-yo. The secretions were minimal though, and there was hardly any "rattle" or "gurgle." The patch was doing its job. Dad was still on low dose Morphine. Naturally, I was scared to death to try any thickened fluids with him... so scared he would choke again. The nurses didn't think he would swallow. The Morphine was absorbed under the tongue, and other meds were now given rectally. Dad's blood oxygen was decent, but his A-fib was worse.

I tried to "entice" him to swallow, by rubbing popsicles on his tongue. He wouldn't.

When the nurse and I repositioned Dad, to change his bed linens and clothes, just a short time on his back seemed to put him in some respiratory distress. I knew he needed to be on his left side, to breathe. My Mom and I went into mourning and gave up hope.

Tuesday, Dad still wouldn't swallow. His breathing became intermittent. He would stop breathing, for 40 seconds intervals. He would then do some "catch up" breathing. I knew this was one of the last "signs" of impending death. I spent much of this day holding his hand, and a night nurse came in so I could sleep.

Wednesday, I woke up... to find Dad improved? His breathing was labored still, but better. No apnea? His temp was normal? I was baffled. I tried to entice him to swallow, with a popsicle, to no avail. Improved or not, he needed fluids to live. Now I was literally going out of my mind. Dad was fighting his pneumonia! Dad was possibly beating his pneumonia! And here I had the hospice vultures circling him, pumping him with "comfort meds" that could be working against him?? Dad's RN came in, listened to his left lung, and told me it sounded better. I was going INSANE.

In a fit of guilt, I called Dad's primary physician... he was new, since Dad's old one recently retired. While waiting for the doctor to call me back, I argued with the Hospice nurses, my niece the RN, and family members. Dad needed fluids, so I wanted him to have an IV. To have an IV, I had to take him off Hospice, and send him to the Hospital. But the ambulance ride could be traumatic for him. His fragile condition... his breathing easily in only ONE position. The nurses told me that dying patients sometimes "rally" with renewed energy, before letting go. It was a horrible thing, to have his ultimate fate in my hands. The Doc finally called me back. He said that Dad's swallowing would continue to get worse, and he knew we didn't want a feeding tube. He said Dad wouldn't ever recover to the point where he was, before the pneumonia. He then finally hit me with one question... he said, "What would YOUR FATHER want?"

Dad was nonverbal for three days. I argued that Dad wanted to live, since he was still fighting. But my Mother said, "J. He wants to stay HOME." This hit me hard. I wanted his passing to be comfortable, in his home... not in an odd, clinical environment. If I could get him an IV for home care, I would have... but it wasn't allowed, or possible. So we kept him home. Through the day, however, I gave him small amounts of fluids in his mouth, and kept all his meds going. Night nurse came in, so I could sleep.

Thursday morning, Dad still had labored breathing, but he seemed worse to me. For the first time, his fingers and toes were cool. His blood oxygen was poor. I manually cleared some feces from his rectum, and gave him some meds anally. I heated him some chicken broth and started giving him tiny amounts. No real swallowing, it would dribble out again. Then I saw his eyes partially open, but not looking at anything. He was too weak to keep the lids closed. I knew it was time. His breathing stopped for long periods of time. I held his face, and told him to "go to the Lord Jesus." With one raspy exhale, he was gone.

Dad fought to the end, because he was a fighter. It was his nature. But he had a terminal disease, with no cure. Parkinson's, with (probable) Lewy Body dementia heaped on top. I miss him terribly, and consider this past year of caretaking him an honor. Don't assume these elderly people with dementia can't have any pleasures or smiles... they can. Hold their hand a LOT. Talk with them. Listen to music. They may not talk back, but that's not the point... it's all for THEM. They're not less than human, with this horrible disease, they're still your loved ones. Treat them as such!

Stories, March 2015
Stories, October 2013 - August 2014
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