The evolution of Dad's care has been a ten year process. Before Mom died, she had always taken care of the housework and meals in their house. She was diagnosed with bladder cancer in the fall of 2003, about a week or two before Halloween. Her diagnosis was a complete shock to our family knowing that she had always taken exquisite care of her health. Mom watched her diet, walked 2 to 3 miles a day, didn't drink or smoke...basically she had a very clean and healthy life. She was stage 3 when her cancer was discovered and she immediately started chemotherapy. Over the next two months, during the course of Mom's treatment, I sometimes had to keep the kids away which I know was terrible for her. She lived for her grandchildren and visited with them a couple times a week. Unfortunately Kelly was in grade school and Allison was still just a toddler. The possibility was too high to risk one of them exposing her with her weakened immune system to some illness they had brought home from school.
By Christmas Mom was in constant pain from her treatment. She tried to make the house beautiful for all of us as she did every Christmas but it was very difficult for her. We all pulled together to decorate the house, prepare Christmas dinner, and make sure there were plenty of gifts and treats for the kids. Mom dressed in a festive holiday dress and Christmas tree earrings, looking beautiful in spite of her illness. Later we would look at the photos of her taken that day and we could see the pain in her expression that she was trying so hard to hide. That was the last time she would see all of us. A week later, after caring for her around the clock for 2 days, Dad and Paula had no choice but to admit her to the hospital. Paula told me as they wheeled her in that Mom reminded her, "Paula, you're my power of attorney". "I know, Mom", she reassured her, "But, you're not going to die". Mom replied, "I'm not..?". Paula and Dad saw her to her room, kissed her goodbye and promised to be back in the morning. Within a half hour they received a call to return to the hospital. An accident had happened. Mom had been given a drug to sedate her while they inserted her catheter. The staff performing the procedure failed to watch her airway. She was without oxygen long enough to slip into a coma. She would never wake up again. Mom spent two weeks in ICU fighting for her life. We all took shifts watching and waiting, hoping for some sign that she would rally. All of her healthy habits were probably what kept her heart beating the last week. Her brain was no longer active.
Ultimately we had to make the decision to turn off the machines. We, her children, our spouses, her grandson and Dad, all gathered in her room with the curtains drawn, blocking out the rest of the unit. We stood in a circle around her bed, everyone holding a hand, a foot, touching an arm or a leg. With the machines turned off we watched her heart monitor continue for several minutes. Eventually her line went flat and I saw Dad lean over and kiss her head. "Godspeed, love..", he said softly. Our family was frozen in that moment for a few minutes. We trickled out of the room one by one. Dad's face was very red but I never saw him cry. It was not his way. He would show his grief in the weeks and months that followed...but never through public tears.
We all had our ways of dealing with mom's passing. Paula and Hillary assembled dozens of duplicate photo albums with years of pictures starting with our parents high school pictures all the way to her last Christmas. We were all expected to participate in this project. I found this a bit frustrating because I was in the process of completing my accounting degree in addition to working and being a parent of two young children. In the end, though, everyone appreciated the wonderful keepsakes they created and sent to many of Mom's relatives.
Paula, Hillary and I all worked in Dad's office. The three of us took turns making lunch for Dad the way Mom did, but we all started noticing dad's rapid drop in weight. Paula started checking up on him at home more often and found he had almost no ability to take care of himself. She began showing him how to make simple meals, teaching him how to run the washer and dryer and other basic household skills. He slowly began to adjust. That's when we all started visiting him once a week. It was an idea Paula initiated to subtly confirm that Dad was taking proper care of himself without making him feel he had us looking over his shoulder all the time. After a while he began to look healthier and we all let out a sigh of relief.
His grief during that time was very apparent. I remember one day before he went in to surgery he stopped me. I could tell something was bothering him.
"What's wrong?" I asked.
"I really loved her....I hope she knew I loved her."
"Dad, I know she knew you loved her. I know it for a fact", I said confidently.
"How do you know?" he pressed.
"Because I was with her for her last chemo treatment. I asked her how she was doing and she told me that you were her greatest support. She said that when she was having a particularly bad day and was feeling like she might not make it, you told her not to give up, that you weren't giving up and modern medicine creates new things every day...that she might even be the first person to receive an artificial bladder", I told him.
I saw his face change as he listened. He said, "Thanks, Erin. Thank you for telling me that. I had no idea." He hugged me and we went back to work.
Dad was in the process of winding down his practice. Few surgeries were scheduled as that year passed affording plenty of time for us to observe how he was handling life without mom. He was still an attractive older man and some of his patients hinted that he might remarry. "I am married. My wife is deceased." he would respond. It became very clear he had no intention to ever have another partner. The love of his life was gone. She was not only his wife but his best, sometimes only, friend. How could he ever even come close to that kind of relationship again?
Keeping dad entertained was a high priority since we all suspected he might allow his depression to take over his psyche. After his practice closed he spent many hours in his workshop, working on his latest project, a kit plane he hoped to eventually fly. My brother, Tom, worked with him, their shared hobby keeping Dad at least a little active and his mind focused. It was a wonderful hobby and probably made for some of his happiest moments. We also wanted to make sure dad had some kind of pet to keep the house from being completely silent when no one else was home, so we all chipped in and bought him a small parrot. He enjoyed the parrot, naming him Mickey, and talked to him often. Mickey had a bit of an attitude and when one of us came over to check on Dad, Mickey made sure we got an earful as soon as we entered the house, squawking and bitching until we left. He had to be put in time out in a back room during family gatherings in order for us to hear each other.
For a while things seemed okay. Our visits were a few times a month with no specific schedule.
It was with Mickey we noticed the first signs of Alzheimer's. Dad frequently forgot to feed him and it became common to find empty seed and water cups when we checked on him. We had many pets growing up and Dad had always taken very good care of them so it was troubling to see him neglecting Mickey. After a while we started noticing his memory getting worse. It was suggested at the time that it might be the beginnings of grief related dementia. He was always very engaged in conversations about science, school, pets and hobbies. Although his interest was still there, we noticed he would occasionally repeat questions or statements. It was a subtle beginning to the looping with which were are now all too familiar.
Then Dad started losing time, too, forgetting what he was doing and why. He would get into his car to go to the grocery store just a few blocks away and forget where he was going. Because of this, we decided to start hiding his keys and offering to go to the store for him. When his memory really started to go we told him his car had a dead battery. After a while he stopped trying drive. I think deep down he was afraid to drive and was glad others were willing to do the driving for him.
Dad was aware he was losing his memory and it terrified him. He would call Paula in the middle of the night and say, "Paula, I'm worried about Mom. She's not here and I don't know where she is." Paula would then have the terrible job of reminding him that Mom was gone. That was never easy and it happened more then once. Another time, he called Hillary around six o'clock and told her, "I'm really worried. I know what time it is and I can't remember a thing I've done today". By then we all knew what was happening and had no idea how to reassure him. It was a very helpless feeling.
The watershed moment in Dad's daily care occurred about three years ago. We all started visiting dad a couple times a week. He would have lunch or dinner with at least one of us every day. Most visits were just a meal and some conversation, usually not more then an hour. Then one day someone, Hillary, I think, notice his leg was swollen...so swollen he could not put on the jeans that he practically lived in. She got him into a pair of scrub pants and took him to the hospital. It was a clot and it was dangerous. He spent several days in the hospital mostly arguing with the doctors about when he would be discharged. He was finally released but needed round the clock care as he had been put on a medication that caused hallucinations and night terrors. He was also unable to get around without a walker and was very unsteady on his feet. The likelihood of a fall was a very real concern. Jennifer was still alive then and since Tom, Paula and I worked all weekdays, she and Hillary alternated day shifts with Dad while the rest of us juggled nights. Tom had the misfortune of the first night shift. He had come from a long day at work to relieve me. I had been sitting in the family room close to Dad's bedroom, within good earshot if Dad were to get up and try to move around. Tom was quite tired and didn't think there would be a problem with him sleeping in the guest room, just across the hall from Dad. Although it is no further away then where I sat during my watch, this guest room, as we discovered that night, is practically sound proof. Poor Tom never heard Dad get up to use the bathroom, lose his footing and fall. Dad may very well have been on the floor for hours. It was Hillary who came for her early morning shift and found Dad on the floor while Tom slept in the guestroom unaware. Tom felt terrible.
During the day Hillary noticed the hallucinations brought on by his meds. Dad would call her attention to birds flying around the room, would refer to her by the name of his former scrub nurse and at one point appeared to hallucinate performing surgery on her arm, finishing by saying, "There. Now keep that good and clean and I'll see you tomorrow".
When I came over he slept much of the time but he was having nightmares. He woke up from one saying, "Did you see that?"
"No", I said, morbidly curious, "What did you see?"
"Some asshole just walked in here, said something that made absolutely no sense and then flew away!" he said angrily.
"You were having a bad dream, Dad. No one has been in here, I promise."
"I've been having terrible dreams about being seriously disabled. It's pretty scary, Erin. I don't want to be disabled."
"You're going to be okay, Dad. It's just the meds. You'll be off of them soon."
It took longer then we expected for Dad to recover and the round the clock care was exhausting. It seemed as soon as one problem was resolved another would pop up. When his mobility began to return we were able to allow him to be alone for an hour or so between caregivers...and as I found out ANYTHING could happen in that short time.
I arrived for one of my visits entering from the door at the carport. As soon as I walked in a wave of foul odor hit me. I called out for Dad and heard him making his way out of the laundry room. He was shuffling out in a shirt and a pair of briefs, embarrassed and immediately started to explain.
"I am so sorry. I have had explosive diarrhea and I'm afraid that front bathroom is a mess. I really tried to clean it up."
"Aw, don't worry about it. You rest and I'll handle it, Dad," I told him. Actually I was terrified of what I was about to find. I went to the bathroom he had indicated and, well, he had not exaggerated. His jeans lay on the floor, the inside coated. He clearly had not made it on time. There was diarrhea on the toilet, smeared on the counter...pretty much everywhere. I sent a text to Paula letting her know the latest disaster and began the horror of cleanup. Paula decided to come over and help but by the time she got there I had taken care of the worst. After everything was in the wash, mopped and/or disinfected we went to the kitchen and slumped in two chairs at the table.
We were both quiet for a moment and then Paula let out an exasperated laugh. "Ya know..." she began, " God's right. We really don't have enough to do. God just said 'I know what they need! EXPLOSIVE DIARRHEA!!'" throwing her hands in the air. We both laughed at the situation. Then she smiled. "You know, Erin, you and I are the only ones who could have handled this one."
"Yeah, your right." I agreed. "Once you've had kids you're more prepared for this sort of thing.
This was one of the worst incidents I can recall but it was a glimpse of things to come. Dad could no longer be alone for long periods of time. It was the beginning of the schedule that would so vastly change all of our lives.
(To be continued)
By Christmas Mom was in constant pain from her treatment. She tried to make the house beautiful for all of us as she did every Christmas but it was very difficult for her. We all pulled together to decorate the house, prepare Christmas dinner, and make sure there were plenty of gifts and treats for the kids. Mom dressed in a festive holiday dress and Christmas tree earrings, looking beautiful in spite of her illness. Later we would look at the photos of her taken that day and we could see the pain in her expression that she was trying so hard to hide. That was the last time she would see all of us. A week later, after caring for her around the clock for 2 days, Dad and Paula had no choice but to admit her to the hospital. Paula told me as they wheeled her in that Mom reminded her, "Paula, you're my power of attorney". "I know, Mom", she reassured her, "But, you're not going to die". Mom replied, "I'm not..?". Paula and Dad saw her to her room, kissed her goodbye and promised to be back in the morning. Within a half hour they received a call to return to the hospital. An accident had happened. Mom had been given a drug to sedate her while they inserted her catheter. The staff performing the procedure failed to watch her airway. She was without oxygen long enough to slip into a coma. She would never wake up again. Mom spent two weeks in ICU fighting for her life. We all took shifts watching and waiting, hoping for some sign that she would rally. All of her healthy habits were probably what kept her heart beating the last week. Her brain was no longer active.
Ultimately we had to make the decision to turn off the machines. We, her children, our spouses, her grandson and Dad, all gathered in her room with the curtains drawn, blocking out the rest of the unit. We stood in a circle around her bed, everyone holding a hand, a foot, touching an arm or a leg. With the machines turned off we watched her heart monitor continue for several minutes. Eventually her line went flat and I saw Dad lean over and kiss her head. "Godspeed, love..", he said softly. Our family was frozen in that moment for a few minutes. We trickled out of the room one by one. Dad's face was very red but I never saw him cry. It was not his way. He would show his grief in the weeks and months that followed...but never through public tears.
We all had our ways of dealing with mom's passing. Paula and Hillary assembled dozens of duplicate photo albums with years of pictures starting with our parents high school pictures all the way to her last Christmas. We were all expected to participate in this project. I found this a bit frustrating because I was in the process of completing my accounting degree in addition to working and being a parent of two young children. In the end, though, everyone appreciated the wonderful keepsakes they created and sent to many of Mom's relatives.
Paula, Hillary and I all worked in Dad's office. The three of us took turns making lunch for Dad the way Mom did, but we all started noticing dad's rapid drop in weight. Paula started checking up on him at home more often and found he had almost no ability to take care of himself. She began showing him how to make simple meals, teaching him how to run the washer and dryer and other basic household skills. He slowly began to adjust. That's when we all started visiting him once a week. It was an idea Paula initiated to subtly confirm that Dad was taking proper care of himself without making him feel he had us looking over his shoulder all the time. After a while he began to look healthier and we all let out a sigh of relief.
His grief during that time was very apparent. I remember one day before he went in to surgery he stopped me. I could tell something was bothering him.
"What's wrong?" I asked.
"I really loved her....I hope she knew I loved her."
"Dad, I know she knew you loved her. I know it for a fact", I said confidently.
"How do you know?" he pressed.
"Because I was with her for her last chemo treatment. I asked her how she was doing and she told me that you were her greatest support. She said that when she was having a particularly bad day and was feeling like she might not make it, you told her not to give up, that you weren't giving up and modern medicine creates new things every day...that she might even be the first person to receive an artificial bladder", I told him.
I saw his face change as he listened. He said, "Thanks, Erin. Thank you for telling me that. I had no idea." He hugged me and we went back to work.
Dad was in the process of winding down his practice. Few surgeries were scheduled as that year passed affording plenty of time for us to observe how he was handling life without mom. He was still an attractive older man and some of his patients hinted that he might remarry. "I am married. My wife is deceased." he would respond. It became very clear he had no intention to ever have another partner. The love of his life was gone. She was not only his wife but his best, sometimes only, friend. How could he ever even come close to that kind of relationship again?
Keeping dad entertained was a high priority since we all suspected he might allow his depression to take over his psyche. After his practice closed he spent many hours in his workshop, working on his latest project, a kit plane he hoped to eventually fly. My brother, Tom, worked with him, their shared hobby keeping Dad at least a little active and his mind focused. It was a wonderful hobby and probably made for some of his happiest moments. We also wanted to make sure dad had some kind of pet to keep the house from being completely silent when no one else was home, so we all chipped in and bought him a small parrot. He enjoyed the parrot, naming him Mickey, and talked to him often. Mickey had a bit of an attitude and when one of us came over to check on Dad, Mickey made sure we got an earful as soon as we entered the house, squawking and bitching until we left. He had to be put in time out in a back room during family gatherings in order for us to hear each other.
For a while things seemed okay. Our visits were a few times a month with no specific schedule.
It was with Mickey we noticed the first signs of Alzheimer's. Dad frequently forgot to feed him and it became common to find empty seed and water cups when we checked on him. We had many pets growing up and Dad had always taken very good care of them so it was troubling to see him neglecting Mickey. After a while we started noticing his memory getting worse. It was suggested at the time that it might be the beginnings of grief related dementia. He was always very engaged in conversations about science, school, pets and hobbies. Although his interest was still there, we noticed he would occasionally repeat questions or statements. It was a subtle beginning to the looping with which were are now all too familiar.
Then Dad started losing time, too, forgetting what he was doing and why. He would get into his car to go to the grocery store just a few blocks away and forget where he was going. Because of this, we decided to start hiding his keys and offering to go to the store for him. When his memory really started to go we told him his car had a dead battery. After a while he stopped trying drive. I think deep down he was afraid to drive and was glad others were willing to do the driving for him.
Dad was aware he was losing his memory and it terrified him. He would call Paula in the middle of the night and say, "Paula, I'm worried about Mom. She's not here and I don't know where she is." Paula would then have the terrible job of reminding him that Mom was gone. That was never easy and it happened more then once. Another time, he called Hillary around six o'clock and told her, "I'm really worried. I know what time it is and I can't remember a thing I've done today". By then we all knew what was happening and had no idea how to reassure him. It was a very helpless feeling.
The watershed moment in Dad's daily care occurred about three years ago. We all started visiting dad a couple times a week. He would have lunch or dinner with at least one of us every day. Most visits were just a meal and some conversation, usually not more then an hour. Then one day someone, Hillary, I think, notice his leg was swollen...so swollen he could not put on the jeans that he practically lived in. She got him into a pair of scrub pants and took him to the hospital. It was a clot and it was dangerous. He spent several days in the hospital mostly arguing with the doctors about when he would be discharged. He was finally released but needed round the clock care as he had been put on a medication that caused hallucinations and night terrors. He was also unable to get around without a walker and was very unsteady on his feet. The likelihood of a fall was a very real concern. Jennifer was still alive then and since Tom, Paula and I worked all weekdays, she and Hillary alternated day shifts with Dad while the rest of us juggled nights. Tom had the misfortune of the first night shift. He had come from a long day at work to relieve me. I had been sitting in the family room close to Dad's bedroom, within good earshot if Dad were to get up and try to move around. Tom was quite tired and didn't think there would be a problem with him sleeping in the guest room, just across the hall from Dad. Although it is no further away then where I sat during my watch, this guest room, as we discovered that night, is practically sound proof. Poor Tom never heard Dad get up to use the bathroom, lose his footing and fall. Dad may very well have been on the floor for hours. It was Hillary who came for her early morning shift and found Dad on the floor while Tom slept in the guestroom unaware. Tom felt terrible.
During the day Hillary noticed the hallucinations brought on by his meds. Dad would call her attention to birds flying around the room, would refer to her by the name of his former scrub nurse and at one point appeared to hallucinate performing surgery on her arm, finishing by saying, "There. Now keep that good and clean and I'll see you tomorrow".
When I came over he slept much of the time but he was having nightmares. He woke up from one saying, "Did you see that?"
"No", I said, morbidly curious, "What did you see?"
"Some asshole just walked in here, said something that made absolutely no sense and then flew away!" he said angrily.
"You were having a bad dream, Dad. No one has been in here, I promise."
"I've been having terrible dreams about being seriously disabled. It's pretty scary, Erin. I don't want to be disabled."
"You're going to be okay, Dad. It's just the meds. You'll be off of them soon."
It took longer then we expected for Dad to recover and the round the clock care was exhausting. It seemed as soon as one problem was resolved another would pop up. When his mobility began to return we were able to allow him to be alone for an hour or so between caregivers...and as I found out ANYTHING could happen in that short time.
I arrived for one of my visits entering from the door at the carport. As soon as I walked in a wave of foul odor hit me. I called out for Dad and heard him making his way out of the laundry room. He was shuffling out in a shirt and a pair of briefs, embarrassed and immediately started to explain.
"I am so sorry. I have had explosive diarrhea and I'm afraid that front bathroom is a mess. I really tried to clean it up."
"Aw, don't worry about it. You rest and I'll handle it, Dad," I told him. Actually I was terrified of what I was about to find. I went to the bathroom he had indicated and, well, he had not exaggerated. His jeans lay on the floor, the inside coated. He clearly had not made it on time. There was diarrhea on the toilet, smeared on the counter...pretty much everywhere. I sent a text to Paula letting her know the latest disaster and began the horror of cleanup. Paula decided to come over and help but by the time she got there I had taken care of the worst. After everything was in the wash, mopped and/or disinfected we went to the kitchen and slumped in two chairs at the table.
We were both quiet for a moment and then Paula let out an exasperated laugh. "Ya know..." she began, " God's right. We really don't have enough to do. God just said 'I know what they need! EXPLOSIVE DIARRHEA!!'" throwing her hands in the air. We both laughed at the situation. Then she smiled. "You know, Erin, you and I are the only ones who could have handled this one."
"Yeah, your right." I agreed. "Once you've had kids you're more prepared for this sort of thing.
This was one of the worst incidents I can recall but it was a glimpse of things to come. Dad could no longer be alone for long periods of time. It was the beginning of the schedule that would so vastly change all of our lives.
(To be continued)
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