Because I Love You

This was written yesterday...

IF YOU ARE FAINT OF HEART PLEASE DO NOT READ THIS POST

I want to remind anyone reading this that it is a diary… my diary. I write from my perspective about my experiences. This post may be more graphic, more brutal, more intense, than what I usually write but death is graphic, brutal and intense. If you decide to continue I will point out that I have left out many events and details between the last post and this one. Because, sometimes, it is more than enough to simply live it.

It is 2:00 in the morning here. Today is Tuesday Oct. 23, 2012. Dad's blood pressure (BP) has fallen to 90/61 (at last reading) with a heart rate of 130 (It's been above 120 since 7:00 am yesterday morning). His oxygen saturation is down in the lower 50% range. His temperature is 97 degrees even and he is currently breathing approximately 30-32 breaths per minute (bpm). I have increased the oxygen to 3 liters. He is in a coma now, as his body is slowly shutting down. I was blown away to discover that his kidneys are still functioning. It's only surprising because he only had about 40% function to start with. I totally thought they would be among the first organs to fail.

Dad appears to be gently snoring as I sit here writing this. But sounds can be deceiving. The soft sound is actually the beginnings of the death rattle and he is beginning to experience small bouts of apnea (pronounced pauses in breathing). His lungs are beginning to show signs of having fluids in them (the lower lobe of the right being worse than the left). His hands are held in the same position he has been holding them since I wakened on Friday morning. His circulation is slowing down. His feet are like ice though his hands are still very warm. Cyanosis (something that causes discoloration to appear in certain places on the human body as life slips away) has begun to appear, shades of purple and blue are appearing on his knees, across the bridge of his nose and on his upper lip. Under his fingernails the color seems to deepen more each time I look at them. His head is held almost rigidly in place but his jaw is slack, the correct term is that it has "dropped". He has breathed only through his open mouth since last Friday. His tongue is a purplish hue pushed toward the back of his mouth which causes the snore.


I know he is not suffering, but I am, as I watch him... as I listen to him... as I wait with him.


That reminds me of a time when he was hospitalized (there were so many of those). Because he was being discharged (he had been admitted through the ER in his pajamas a couple of nights previously), I had run home to get him clothes. As I walked in the house, the phone began to ring. It was Dad and he had no memory that I had just left him ten minutes before. He thought he was at a movie theater and he wanted a ride home. He was impatient because he thought he had been there waiting for me all afternoon. When I assured him I would be there in just a minute, he began to cry. Again he insisted that he was tired of waiting and he just wanted to go home and eat. He then shouted at me, "I am sitting here waiting, waiting, waiting, BECAUSE I love you!" The entire situation was founded in the delusions of a demented mind, but those words have replayed themselves a number of times since they were originally hurled at me. They have been an odd litany for me over the past few weeks, but never more so than throughout this seemingly endless night. My mind screams, “Dad, I am sitting here waiting, waiting, waiting, BECAUSE I love you!”

It's 4:00 am. That means time for vitals, assessments, and all the medical stuff again. Well, no significant change in any of the numbers, only his BP has dropped a bit. However, the physical changes are pronounced. His fingers are now turning shades of purple in addition to his bluish fingernails. His eyes and cheeks are suddenly sunken and hollow. His breathing is erratic and the bouts of apnea are worsening. I take great consolation in the fact that he is in absolutely NO pain, he is in his own home instead of a cold institution, and that there isn't a nurse alive who could love him as much as I do or care for him as gently.

6:00 am and the sun is finally rising. We have made it through another night. Morning brings with it more rigidity to his worn out body. The blood in his feet is gathering at the back of his heels (called pooling) and he is developing flat spots where they rest against the mattress. The signs are slowly coming together. His BP is the highest it has been since midnight (which is still abnormally low for him). His feet are cold now as his body temperature begins to drop.

At 8:00 am his blood pressure has dropped significantly again. His breathing pattern has changed drastically. His breaths per minute have slowed down slightly. The bouts of apnea have lessened for now. There are no fluid sounds in his throat and he is back to a slight snore.

9:00 am if you didn’t know what the shadow of death looked like you would probably think he is simply sleeping.

10:00 am and everything is changing now. His breaths per minute are down to about 20. His oxygen saturation is down to 46%. His pupils are fixed and have begun to dilate. I have bumped the oxygen up to 4 liters. I know we are nearing the end of his life. I repeatedly assure him that Mom is waiting for him and it is okay to go join her. I tell him frequently that I love him and it is finally time to go. There is nothing more I can do.

Noon brings major changes. His blood pressure has fallen to 79/43. His pulse is at 46 beats a minute. His body temperature continues to fall. I know in my heart that I will not be checking his vital signs at 2:00 pm. I whisper my goodbye in his ear and leave him alone with his daughter. I know how much she needs this time with him. It is her time to say goodbye, to read him psalms and to pray with him.

At 1:30 pm I am on the phone with one of my nephews when Richard rushes up and says I need to check on Dad. ”Get your stethoscope,” he shouts as I toss him my phone mid sentence and rush to Dad. As I approach the bed, I see that he is still breathing… barely. I listen to his heart beating very faintly. I put my left hand on his now cold forehead. He took three breaths and his heartbeat faded away. At 1:35 pm Dad’s soul left his body and he is finally at peace. He is finally reunited with those who have gone before him. Most importantly, he has left behind the Alzheimer’s that robbed his mind. Now he is once again whole.

Squamous Cell Carcinoma is One of the Dirtiest Things I Know

Well, here we are. Dad’s mental state is deteriorating noticeably. He has this annoying new habit of laughing to himself when he disagrees with anything that is said to him. I never knew a laugh could sound so painful… so hateful. He is becoming more paranoid and delusional daily. He frequently has no idea where he is and asks why we “brought him here to visit”. He is transported back in time to Louisiana and believes he still lives there. It isn’t uncommon for him to ask me to “take him back to his bride”.

Physically he is doing amazingly well. Ask anybody that knows him and they will tell you he looks better than he has in years. If you were to ask his doctors, they would tell you that he is in remarkable shape for someone with his list of physical conditions, diseases and age. He is frequently referred to as a medical miracle. It’s as if his physical state is improving as his mental state declines.
Tomorrow, we will go in for yet another surgery. Dad has squamous cell carcinoma on his right ear, again. They will do Moh’s surgery and it will be gone… until the next time.

This past week we found out my mother has squamous cell carcinoma. It’s not on her, it is inside her. She has lung cancer. It wasn’t there in April when she had a CT scan because of pneumonia but it is there now in August. I wish to God there was a treatment like Moh’s that could fix her as easily. Hers is inoperable. We are so in need of a medical miracle here. What a difference it makes to have something like this inside your body rather than outside it! I hate that I am here and not there. I hate that I constantly end up feeling like I am letting down someone in my life, someone that I love. It is all part of the curse/blessing of being a caregiver.

For those who may not know it, my mother spent the last seven years of my grandmother’s life as her caregiver. She devoted herself to her mother. She gave up her home, her time, her everything to be there and care for her mother. We lost Grandmama 5 months ago. Needless to say, Mama has been killing herself trying to settle her estate, deal with all the little things that have to be done, all while dealing with her grief. As she has physically deteriorated, we all assumed it was just a part of the insane stress she has been under. We never guessed there was a time bomb ticking inside her.

Caregiver stress weakens the immune system. A weakened immune system allows things like cancer to grow. I can’t help wondering if there isn’t a direct correlation between the amount of stress and the rapidity of the growth of her disease. I am so frustrated and angry at something so far beyond our control. But I do know that those feelings, too, will eventually pass. Isn't it odd how much of everything in our lives depends on the passage of time?

My mother is one of my heroines. She is one of my best and dearest friends. She raised me and my little sister as a single mom in an era where we were the minority. Very few of my friends growing up lived in a one parent household. If they did, it was usually because a parent had died, not divorced. Mama worked for a pittance and struggled to provide for the three of us. She held her head high and did the best she could (with much help from her beloved parents). She taught me that I can do anything I put my mind to as long as I believe in MYSELF. Most importantly, she loved us.

Over the last five months, I have thought to myself countless times that Mama finally has an opportunity to LIVE. She can finally live her life for herself… she can do the things she has never been free to do… she can live a life where she doesn’t have to answer to another living soul. I’m a bit pissed off that a stupid disease is invading her and trying to knock her down. It is a strong reminder that life is too short. It’s a shame it takes reality biting us in the butt to remind us that life is ALWAYS too short!

I have often said that I come from a long line of Steel Magnolias. It is strong, female, southern stock that always seems to rise like a phoenix amidst the ashes of circumstance. Yes, I know I am somehow mixing metaphors but I also know that the people who read this will completely get my meaning. I also know that there is always a chance my mom will beat this thing simply because she is who she is and she is a Steel Magnolia.

If you know my mother, you know what a great person she is. If you don’t know her, I sincerely wish you did because your life would be enriched by the acquaintance. But whether you know her or not, I ask that you lift her up in prayer, kind thought and wishes. Every little bit helps. And we all need a little help sometimes.