Monday, September 5, 2011
Heartbreak With a Positive Attitude
It is very different providing for your father than it is providing for someone else's father. As the wife of one of my former patients told me, "there is no going home after the shift is over; this is my life." Watching my father deteriorate on a daily basis is difficult, challenging and even devastating, but it is also rewarding. Being able to provide the loving support that he would not receive in a nursing home is the rewarding portion, what I focus on when the times are tough. Cancer in the brain causes deterioration of motor skills, memory of more than people, and abilities to care for one's self as well as provide information about pain, discomfort, confusion and a variety of other problems.
What is this thing and why do I need it?
As my father sinks deeper into the dementia caused by the cancer, I have more challenges. My father has been incontinent for many years due to the bladder cancer which began in 1987. Since that time, Dad has had a cystoscopy twice a year and numerous other procedures involving tubes inserted into his bladder. This is painful because the residents who are allowed to perform these procedures at the VA in Omaha are improperly monitored or supervised, incompetent and totally without regard for human dignity or the pain they inflict. We who see the care at the Omaha Veteran's Hospital are aware that at least 20% of the people there are more concerned with their paycheck than they are with the patient. There is another 10% who can not get jobs elsewhere so they work at the VA. That 30% seriously undermines the other 70% who work their tails off every day to provide the highest quality care for our veterans. The incompetent are the ones we see and remember. We do not remember the ones who smiled and were gentle with his rolling veins when blood is taken; we do not remember the nurse or CNA who sat patiently by his bedside while he tried to explain his need. We remember the one who was impatient and inconsiderate in his time of need for gentle, tender care.
I have so many names of tender loving care at the Omaha VA. Nurses, doctors, CENAs, CNAs, VIS coordinators, Audiology clerks, Oncology receptionists, and the list goes on and on. I have a couple of names of those who told my father, "We don't do that procedure anymore on you. We need to save those funds for the young veterans coming back from the war. You are over 80 and no longer a viable member of society". These things have been said to my father over and over as he fought to keep going. Now, the VA has "washed their hands of" him. He is terminal and there is nothing more they can do. It hurts my heart that he has suffered at their hands. While he has gotten some really good care, it is amazing to me that his primary care physician, Temple Brennan, ordered him to be on a diuretic when he is dehydrated and has been for years; ordered him to be on two blood pressure medicines and two cholesterol medications and his blood pressure was above 180/ 50, but when he came off all of it, his BP is 120/65. Did it suddenly drop because of other reasons or was he improperly medicated? There is no way to answer that question. Any answer I give would be slanderous or cause for legal ramifications. I can say that when I went to ask that he be taken off the diuretic, she told her nurse to refuse, saying it would be too high a risk for a stroke. Interestingly enough, the minute he was taken off the cholesterol medications, the blood pressure meds and the diuretic, his blood pressure returned to a relatively normal rate, not perfect but better than when he was medicated. Since he is on hospice, we are allowed to remove his medications and he is allowed to refuse it but prior to this he was not allowed to refuse or there are repercussions.
Today VNA, Visiting Nurse Assn, is providing Hospice care for Dad. His aid, a great man named Frank called on Friday and said dad is scheduled for a bath at 8 am today. I said that would be fine. Knowing that Dad may or may not be going to breakfast with my brother before my nephew leaves today, I agreed. My brother said he would be taking dad this morning at 9 am, which would be fine. Frank is only here an hour to bathe Dad so I knew it would work. Then Frank was 30 minutes late. What a mess. This throws my day off for hours. My brother is frustrated because he wants to schedule his last day with his son to include time with Granddad, but I messed it up. I don't pass the buck beyond saying the aid is late and I will drop Dad off to them, which my brother declines. He arrives, Dad is ready, and then Dad says, "What is this thing and why am I wet?" I discover that when I thought Frank was monitoring Dad's getting dressed, Dad put the diaper and guard on with the crotch on his left side, meaning the diaper is only getting wet on the side and the pad meant to absorb is absorbing only what fluid gets to his right hip (none) and I am really mad because I have to change his diaper, guard, his pants, his socks, his shirt and his shoes. Everything he has on is wet. The shirt tail is wet, it dribbled to his socks and his pants are soaked in a few minutes. Starting over. Called hospice and asked that they council Frank, not remove him. These are training issues which can be resolved and a good, compassionate aid can be retained. They offered not to send him back but I would hate to have Dad lose a caring aid who just needs to understand the family's needs as well as the patient's needs. Finally, Dad is off with brother and nephew to enjoy a bit of best-can-be-expected-quality-time with his son and grandson and my husband and I are off to take care of chores we have not taken care of. We have a business and have discovered a quality issue from the factory which needs to be dealt with immediately. This is an issue which could close us down if any others leave our store without being checked. We discover two others with quality issues but it takes an hour of our time to inspect every piece to ensure there are no rips or tears. We then are off to pick up my car, drop Jeff at his office to study for his test while I take the dog to the dog park and get some rest while our 5 month old labradoodle runs and plays. Bear is such a good dog. He is loving towards Dad and everyone. He is a puppy and loves to play so I take him to the dog park when I can. Jeff used to take him daily but with working full time finally, he can not do that every day. Soon I will be able to take him several times a week. We will see what this week brings.
I have so many names of tender loving care at the Omaha VA. Nurses, doctors, CENAs, CNAs, VIS coordinators, Audiology clerks, Oncology receptionists, and the list goes on and on. I have a couple of names of those who told my father, "We don't do that procedure anymore on you. We need to save those funds for the young veterans coming back from the war. You are over 80 and no longer a viable member of society". These things have been said to my father over and over as he fought to keep going. Now, the VA has "washed their hands of" him. He is terminal and there is nothing more they can do. It hurts my heart that he has suffered at their hands. While he has gotten some really good care, it is amazing to me that his primary care physician, Temple Brennan, ordered him to be on a diuretic when he is dehydrated and has been for years; ordered him to be on two blood pressure medicines and two cholesterol medications and his blood pressure was above 180/ 50, but when he came off all of it, his BP is 120/65. Did it suddenly drop because of other reasons or was he improperly medicated? There is no way to answer that question. Any answer I give would be slanderous or cause for legal ramifications. I can say that when I went to ask that he be taken off the diuretic, she told her nurse to refuse, saying it would be too high a risk for a stroke. Interestingly enough, the minute he was taken off the cholesterol medications, the blood pressure meds and the diuretic, his blood pressure returned to a relatively normal rate, not perfect but better than when he was medicated. Since he is on hospice, we are allowed to remove his medications and he is allowed to refuse it but prior to this he was not allowed to refuse or there are repercussions.
Today VNA, Visiting Nurse Assn, is providing Hospice care for Dad. His aid, a great man named Frank called on Friday and said dad is scheduled for a bath at 8 am today. I said that would be fine. Knowing that Dad may or may not be going to breakfast with my brother before my nephew leaves today, I agreed. My brother said he would be taking dad this morning at 9 am, which would be fine. Frank is only here an hour to bathe Dad so I knew it would work. Then Frank was 30 minutes late. What a mess. This throws my day off for hours. My brother is frustrated because he wants to schedule his last day with his son to include time with Granddad, but I messed it up. I don't pass the buck beyond saying the aid is late and I will drop Dad off to them, which my brother declines. He arrives, Dad is ready, and then Dad says, "What is this thing and why am I wet?" I discover that when I thought Frank was monitoring Dad's getting dressed, Dad put the diaper and guard on with the crotch on his left side, meaning the diaper is only getting wet on the side and the pad meant to absorb is absorbing only what fluid gets to his right hip (none) and I am really mad because I have to change his diaper, guard, his pants, his socks, his shirt and his shoes. Everything he has on is wet. The shirt tail is wet, it dribbled to his socks and his pants are soaked in a few minutes. Starting over. Called hospice and asked that they council Frank, not remove him. These are training issues which can be resolved and a good, compassionate aid can be retained. They offered not to send him back but I would hate to have Dad lose a caring aid who just needs to understand the family's needs as well as the patient's needs. Finally, Dad is off with brother and nephew to enjoy a bit of best-can-be-expected-quality-time with his son and grandson and my husband and I are off to take care of chores we have not taken care of. We have a business and have discovered a quality issue from the factory which needs to be dealt with immediately. This is an issue which could close us down if any others leave our store without being checked. We discover two others with quality issues but it takes an hour of our time to inspect every piece to ensure there are no rips or tears. We then are off to pick up my car, drop Jeff at his office to study for his test while I take the dog to the dog park and get some rest while our 5 month old labradoodle runs and plays. Bear is such a good dog. He is loving towards Dad and everyone. He is a puppy and loves to play so I take him to the dog park when I can. Jeff used to take him daily but with working full time finally, he can not do that every day. Soon I will be able to take him several times a week. We will see what this week brings.
Friday, August 19, 2011
Love is Eternal; Only Life is Terminal
In the last two years I have watched my father go from being the strong, independent guy, with a tremendous sense of humor, to a helpless individual who is not quite sure what is happening around him. This change came slowly in many ways, but overnight in others. In some respects there are still glimpses of the man I call my Daddy, but at other times I know he is gone forever. The grieving process has begun for me because I already know he is mostly lost.
So who was my Dad? Born June 27, 1920, he was one of the best looking men of his time. Strong, medium height, thin build, great posture and a handsome smile. He was the epitome of the professional salesman of the 1950s. My dad could sell his products, office equipment, to anyone. He was gentle, soft-spoken, polite and respectful every moment of his life. He was the man others came to when they had a problem with a customer or client. He was the man everyone everywhere called friend. My dad was well known and well respected in the industry, in Omaha and across the country. He could walk into places like Standard Duplicating Machines in Boston, All Makes or Emarines locally, and walk out with anything he needed, on his signature; because his word was his bond, and everyone knew that.
Then his daughter, my sister, was diagnosed with kidney disease in the late 1960s and his baby girl was going into renal failure. The shock was huge but he dealt with it, as he dealt with everything: he prayed and he kept going, knowing that God had a plan and he could do nothing more than work that plan as best he could. Dad was the rock, our strength. Joann, my sister, was the baby girl whom he adored. He and Joann spent many years being best friends and she could do no wrong in his eyes. When the diagnosis came, it rocked his world. The safety of his family was in jeopardy. His mother died just a few months after the diagnosis and he was thrown for a loop, but he kept on going. The answer to his prayers came with the discovery of organ transplantation. My brother gave my sister a kidney on my mother's birthday in 1970. My sister was safe for an as-yet-undetermined-period-of-time. Dad's prayers were answered and he was grateful. That is who this man is and has been for the better part of 90+ years - grateful for all the blessings and wonders of life - grateful for every day to live with "positive thinking" and to thank the good Lord for everything we have in life, because without Him we have nothing. It is not to be considered that while his two children were recovering from the transplant, someone broke into our home and stole my mother's purse off the counter in the kitchen. This purse contained a number of things which could never be replaced, but thieves don't care about anyone but themselves. I still hope someday they find out what it is like to be victimized the way they victimized others. My father never experienced that type of wish for revenge. He just said, "well, they must have needed it more than we did, that's all".
Here we are with this same wonderful, strong-willed, man who can take on the world for his family. This is the man who is now battling cancer in his brain and in his lung, and God-only-knows where else it has spread. He is 91, 5'7" tall, weighs a mere 140 pounds. He is mostly blind, somewhat deaf and has lost his ability to reason. Not his ability to think, only to reason. He can understand that he can not make sense of things. I think it is worse that he can't reason but can think because he knows what he is missing, but knows he can't figure out what to do to stop it from happening.
This is the beginning of the end. This is where it is up to me to keep him out of a Warehouse of the Living Dead, as he has referred to nursing homes for many years. This is where his daughter steps in and says it will not happen, if I can help it. It is where this daughter says, "No, Pop, we will do this for you. No matter how hard you make it for us, we will love you the way you would love us in the same situation." Because no matter how tough it got for my dad during those years, he never turned his back on his family for one minute. I won't turn mine on him. Because Love Means Never Having to Say "I Won't."
This journey will be complete with tears, frustration, anger, fits of rage where I just want to throw in the towel, and Jeff, my partner, husband, best friend, and lover helps me to stay sane. There will be moments when Jeff and I are at each others throats and I won't be as loving towards him as I should, but it will be at those moments when Jeff and I will still turn to each other and reach out for the love we know the other holds. These moments are the reason Jeff and I will survive no matter how difficult it is, because we have that bond that is deeper than just love. It is knowing that no matter what happens there is true love and support an arm's length away. When I put out my arms, Jeff will hold me until the stress or pain is manageable, no matter how long that takes. I will support him while he deals with this because it is more difficult being the son-in-law than it is being the daughter in this situation. He doesn't have the same level of obligation. He took this on by choice and it makes me more proud to have him as my husband, knowing that he will do this for me, at the expense of so much of his life.
So who was my Dad? Born June 27, 1920, he was one of the best looking men of his time. Strong, medium height, thin build, great posture and a handsome smile. He was the epitome of the professional salesman of the 1950s. My dad could sell his products, office equipment, to anyone. He was gentle, soft-spoken, polite and respectful every moment of his life. He was the man others came to when they had a problem with a customer or client. He was the man everyone everywhere called friend. My dad was well known and well respected in the industry, in Omaha and across the country. He could walk into places like Standard Duplicating Machines in Boston, All Makes or Emarines locally, and walk out with anything he needed, on his signature; because his word was his bond, and everyone knew that.
Then his daughter, my sister, was diagnosed with kidney disease in the late 1960s and his baby girl was going into renal failure. The shock was huge but he dealt with it, as he dealt with everything: he prayed and he kept going, knowing that God had a plan and he could do nothing more than work that plan as best he could. Dad was the rock, our strength. Joann, my sister, was the baby girl whom he adored. He and Joann spent many years being best friends and she could do no wrong in his eyes. When the diagnosis came, it rocked his world. The safety of his family was in jeopardy. His mother died just a few months after the diagnosis and he was thrown for a loop, but he kept on going. The answer to his prayers came with the discovery of organ transplantation. My brother gave my sister a kidney on my mother's birthday in 1970. My sister was safe for an as-yet-undetermined-period-of-time. Dad's prayers were answered and he was grateful. That is who this man is and has been for the better part of 90+ years - grateful for all the blessings and wonders of life - grateful for every day to live with "positive thinking" and to thank the good Lord for everything we have in life, because without Him we have nothing. It is not to be considered that while his two children were recovering from the transplant, someone broke into our home and stole my mother's purse off the counter in the kitchen. This purse contained a number of things which could never be replaced, but thieves don't care about anyone but themselves. I still hope someday they find out what it is like to be victimized the way they victimized others. My father never experienced that type of wish for revenge. He just said, "well, they must have needed it more than we did, that's all".
Here we are with this same wonderful, strong-willed, man who can take on the world for his family. This is the man who is now battling cancer in his brain and in his lung, and God-only-knows where else it has spread. He is 91, 5'7" tall, weighs a mere 140 pounds. He is mostly blind, somewhat deaf and has lost his ability to reason. Not his ability to think, only to reason. He can understand that he can not make sense of things. I think it is worse that he can't reason but can think because he knows what he is missing, but knows he can't figure out what to do to stop it from happening.
This is the beginning of the end. This is where it is up to me to keep him out of a Warehouse of the Living Dead, as he has referred to nursing homes for many years. This is where his daughter steps in and says it will not happen, if I can help it. It is where this daughter says, "No, Pop, we will do this for you. No matter how hard you make it for us, we will love you the way you would love us in the same situation." Because no matter how tough it got for my dad during those years, he never turned his back on his family for one minute. I won't turn mine on him. Because Love Means Never Having to Say "I Won't."
This journey will be complete with tears, frustration, anger, fits of rage where I just want to throw in the towel, and Jeff, my partner, husband, best friend, and lover helps me to stay sane. There will be moments when Jeff and I are at each others throats and I won't be as loving towards him as I should, but it will be at those moments when Jeff and I will still turn to each other and reach out for the love we know the other holds. These moments are the reason Jeff and I will survive no matter how difficult it is, because we have that bond that is deeper than just love. It is knowing that no matter what happens there is true love and support an arm's length away. When I put out my arms, Jeff will hold me until the stress or pain is manageable, no matter how long that takes. I will support him while he deals with this because it is more difficult being the son-in-law than it is being the daughter in this situation. He doesn't have the same level of obligation. He took this on by choice and it makes me more proud to have him as my husband, knowing that he will do this for me, at the expense of so much of his life.
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