02-23-2014 Mom's death

I’m kind of numb tonight, more wounded than numb, broken hearted. Mom had an episode last night about 4am when I got up there, stayed until she rested and went to sleep, about 5:30am, the walked home. She was talking normal after I gave her something for pain and something to calm her nerves. It only took a little of each, mush less than normal. We adjusted her pillows and fluffed them, repositioned her in the bed, covered her up. Mom ask me to stay so I did until she went to sleep. Megan stood watch the rest of the night and said she slept well. She had a very rough night until then, after that she had a good night. Denise went up there right before 7am and sent Megan to bed. 

  I had come back home and went back to bed, mom’s BP was good and her heart was beating about 72, all was great. At 10:15 Denise called and woke me up, she was saying to come up there, mom was breathing funny. She called a second time before I could get out the door, I could hear the panic in her voice which is unusual for Denise. I put my teeth in, pants and shirt on and was up there by 10:30. Denise was standing there in a panic, she was crying and saying she couldn’t find a pulse. Mom had died right before I got there, just minutes before. She looked peaceful on my face, still warm, she had sweated in her sleep. Denise said it came on suddenly, no strained or laboring, she just breathed shallow for a few minutes, then stopped.

   I didn’t take it with the strength I thought I would, neither did she or Megan. I am lost. I don’t remember crying this hard, ever. Mom is out of pain, yet that doesn’t ease the pain of her passing. I know there are no goodbyes but this certainly feels like one. I called the Hospice nurse, then Tina, Misty, and Annie... by then I was pretty much all to pieces. Denise called and talked on the phone after that. The Hospice nurse came down and talked with us, she called the Funeral Home for us and hugged us. So thank you goes out to Jean Knight of UT Hospice for being so helpful and kind today and throughout this. Johnny from Farrar Funeral Home came to get mom's body, he offered to wait until we left the room to take her from the bed to the board for transport. I stayed. 

  We went to the Funeral home at 4pm to start getting everything arranged, but mom had told Johnny most of what she wanted already. I told him whatever mom said is what mom gets. Johnny was helpful and nice, mom loved him. I managed to hold it together until all that went by, even when the preacher came by, thought I unraveled a bit then. 3 other people from the church came by, didn't know them, but they were nice. After everybody had left and Denise was inside, Megan was home, I went on the back porch and went to pieces. Denise was inside in pieces while Megan was home, so we all hid. Everything changes now... 

  Mom was born and lived in the Great Depression as a child, born in 1928. She was upbeat and smart, remained that way the whole time through. Like JFK, she lived her life under something that still stands out today to me. "Some see things as they are and ask why. I see things as they could be and ask why not." She got her GED in her 50s, then went to Vocational School to train for office work, then onto Real Estate school to be a Realtor. In her 70s she went after her Broker License, then onto opening her own company, American Homes & Realty Inc. I worked there with her after I left UPS until the Throat Cancer. Mom had planned on me taking it over one day, I already had paid to study for my Broker when the throat cancer hit. I ended up not being able to go back into the business. Imagine at her age those accomplishments. Some said mom was greedy since she kept on working, but she wasn't. Mom made tons of money yet died in debt, not from bad anything, but from giving it out. She could not enjoy having anything if she saw someone who didn't have but needed. 

  Mom took me in at 6 months old and her and dad raised me as their own, yet my biological parents still had a part in my life. Technically my grandmother, but completely my mother. She never practiced tough love but rather unconditional love. She believed in me even when I didn't. She saw the good in everybody and held no grudges. I was made better not by her words but by her and dad's examples. I am broken right now yet I know I have been blessed by God allowing me to be in the company of such great people, and still am, my wife and kids. Mom lived her life like dad, to an old Cherokee proverb without probably even knowing it. "When you were born the world rejoiced and you cried. Live your life so that when you die the world cries and you rejoice." I know mom is with dad now and everything is great. Surely Heaven is brighter by her addition, while the world is a bit darker by her passing. 

       

02-21-2014 New Doc

Been a wild day, but an eventful one. Me and Denise went to UT to my appointment with Dr Bushkell that Sally recommended. We both liked him. I stripped down (except the underwear) and he examined me, can't recall word or term, but Denise said it meant all over or wide spread. I also had him check my scalp and the sores and hair loss, which he said something about stress and that was causing all that. Had him freeze a place off my forehead and he cut a place off my back, I'm assuming he stitched it back, not sure. He decided to take a biopsy of my left leg and I'm to do fasting blood tests Monday. Maybe that is how they stage this type of Non Hodgkin's Lymphoma, not sure there either. Him and Denise talked, I just listened, Denise will interpret all of it for me. Thing is, some comfort may be on the way. He prescribed a special shampoo, creams, ointments, and something to relax me a bit at night to go to sleep... which ain't likely to happen just yet. I told him I was one of Dr Zic at Vanderbilt patients, but it is just too far to drive, ain't like it can be cured anyway. Zic is a good doctor and one of the leaders in this type cancer.

  So I have my blood tests Monday and combined I guess with the biopsy, they can stage it. Bushkell knows Zic and he said he was going to talk with him. I have a Narrow Band UVB machine, but side effects are Squamous Cell Carcinoma, aka, what my throat cancer was, and I pray I am using the correct term... was. He stitched up my leg, said he could tell I was feeling it and asked if I was ok. I told him I could feel it but I've felt worse, not a problem. I think I may have screwed up the area though tonight. If I did I did, its a small hole any way.

  From Sunday night until Thursday night, 9 1/2 hours sleep, slept right through the storm Thursday night, got in bed probably about 12:30-1:00am and tonight, probably 2am by the time Megan is suppose to call to update me again on mom. I come back home about 9pm, but by 11pm mom was back in A Fib and sick at her stomach, so back I went, then again at 12:15 to measure out the med dose to help her with the pain. Now she is nervous and loaded with anxiety, so I wait for Megan's call that may come at 2am to see if the pill I had Megan give her that I already prepared works. I stand ready to go back up there to attempt to figure out yet another dosage.

  So now for something that happened today.

  We got back from Knoxville and when we got home Megan had company, Tina, Charlie, and William were there. Mom was staring at the ceiling, we were all more of less just talking. Megan went into the Kitchen to eat the food we brought for her. Out of the blue, as clear as a bell, mom said, "Is Gene out there?" It all got quiet. "Is Gene out there in the garage?" Tina spoke softly and said yes. "Is he ok?" Again Tina softly said yes, he is fine. Mom made a few more questions and statements, then wanted to know if dad was smothering and wanted somebody to check on him. Then she ask if dad was dead. The room was quiet. She said, "Anthony, tell me the truth, is Gene in the garage?" I thought and finally told her,  "No, he's not in there momma."  "Is he dead? Tell me the truth." I said, "Yes, dad has been dead almost 4 years now mom." She was silent. "Dad is ok though, he is great, he is in Heaven with God now, but I'll bet he is looking down."

   "Is he smothering?" mom asked. I thought about when he was on the ventilator, mom worried about him smothering, that has worried her so much. "No, he isn't hurting anymore, he is probably singing and dancing. You will see him again one day, so will I and all the rest of us... in God's own time though. Where daddy is nothing can ever harm him or even bother him now. I'm sure he will be waiting for us one day, just as I'm sure he is watching down at us." The room grew quiet again and mom stared at the ceiling silently, her mouth moving from side to side, she just laid there. Finally she said, "So Gene is dead." I said, "Yea mom, dad is dead, but he is alive in the real world."

  I still don't figure just what happened. I maybe should have lied, but then again she demanded the truth. No tears ran down, she seemed to be satisfied, either that or came back into her mind. Maybe it was her way of testing us, or maybe she saw something we didn't. As the day progressed, so did mom. She done so well today after that. Tonight though Megan calls, I've been up there twice since I left, and expect a another time. I just called and mom is better. Thank God. After 2 days of no eating and hung somewhere between life and death, today became a good day as she came back to herself.

  It is a hard job trying to figure out what to give, when to give, and how much to give. You want to keep her comfortable yet cognitive. I have no idea what meds do what in power, but Denise has told me and the Hospice nurse labeled all the meds and what they do. I know what it is like to be where mom is, but I never knew what it is like to be where Denise was/is. When we started this we knew, and was told, the burden would be on us for caregivers. Would it have been easier to care for mom here, yes. Did we have a spare room, yes. Was that what mom wanted, no. The 1st two questions together do not, I repeat, do not, equal the last one. Is that what she wanted, she wanted to go home. I was the same way, if I were to die, I wanted to be home. It is hard when one doesn't want to send them into lala land, yet leaving them in pain isn't good either. What works today may have to be altered tomorrow. Each night, when I say my prayers before I sleep, my prayers now include a plea for help. To allow me to do no harm while at the same time take care of mom, who knows, maybe even build her up. But that seems impossible now, we seem to not be able to get her out of A Fib. The heart looks to get her before the cancer does.

  This has led me to an even deeper understanding and respect for Denise and any caregiver. It is hard to fight death every day, hard to be sick, hard to even see the light at the end of the tunnel after so long. But I tell you truth, as straight as I can, it is equally hard to be the caregiver. It is so hard to see a loved one struggle and slowly wither away, and not be able to stop the pain. Life is full of moments, yet few moments define one and change one. This is one of those things and you will never come out of it without scars. Scars can signify a battle turned bad, or badges of honor. We may not get to pick these moments but we do get to pick how we become after the changing moments have passed.                             

02-17-2014

Mom dwindles at a fast pace lately. Megan mentioned she saw a big "knot" while changing her diaper today. I explained that with her loss of so much weight so fast it is probably one of the tumors. Megan has really amazed I think us all, some more than others. The Hospice ladies are very impressed with her, especially with her hearing loss, but at least one of them also has hearing problems too. The baby at 21 has grown up in so many ways. She may not have her mom's professional training but she has her heart and compassion. Megan has moved in with mom and tends her during the night and many times throughout the day.

  Mom's BP was 71/54 and her heart rate at 103 this morning. Denise always checks mom's vital signs before heading to work, again after work, and later that night before bed. Denise makes the call on heart meds to give, over 20 years experience, she knows more that I will ever forget. I usually call her at 10am to give her the vital signs and she says what if anything mom needs, then I carry that order out. This morning though I got a late start and wasn't there long, called Dr Schindler after Denise fussing with me last week, perhaps I should have listened. They gave me shots and called in meds for me, double pneumonia, I'm not for sure if that includes the Bronchial part. On the way back I noticed the cows needed feeding, so I stopped in and fixed mom, Megan, and me some breakfast... mom ate it. I scrambled the eggs without butter to try and keep mom from getting sick again, but laced them with salt in an attempt to get her BP up. Denise had already given mom her meds for A Fib, which she was in again. I had her eat 2 salty crackers and drink GaterAide over the course of the day and eventually her BP came to 104/54, her heart back in Rhythm, but that eventually went back out later in the night. I fed the cows and Donkeys in between getting mom salty stuff to eat, she is easily made sick and throws up.

I'm about to go to bed, hopefully sleep a little more than the previous nights. It seems to be worse at night, feel like I'm coughing up a lung sometimes. I have 2 appointments tomorrow, God willing. Friday I finally have my appointment at UT with Bushkell for the NHL, I'm not sure what I will have to do to try and regain control of it. That appointment I will have to keep, this has become pure misery, a living Hell. I hope this guy is good, I really don't want to have to go back to Vanderbilt, long trip.

To Denise & Megan, for all I have seen them do both now and in the past, I think this song applies.

        

02-12-2014

   Mom has been back home since Saturday (8th), started out rough but so far so good. Denise worked her butt off when mom went into A Fib the first few hours of being home. She got her back in adjusting mom's meds, I sometimes forget just how good she is at that stuff. Denise stops in and checks mom's vital signs out, gives mom her meds, and leaves instructions for me before she goes to work. At 10am I call her with mom's BP and heart rhythm and Denise says what if anything and how much to give. I fix or buy breakfast, fix lunch and dinner for mom. Megan stays the nights and sleeps during the days at mom's. She attends mom's needs. Despite the lack of faith a family member had, Megan has done an excellent job, she just needed the chance to prove that she can do stuff. I dare say nobody could do it better. She is hard of hearing not stupid, and if there was ever a doubt there isn't now. This same family member, who is a nurse sent hot dogs over yesterday! Who feeds Hot Dogs to a person who has had A Fib, BP problems, and Congestive Heart Failure, especially when they are a nurse. I played the role of a bad guy and told her she couldn't have them, too much sodium content in them.

  Now we stumble upon a not so good thing, I have caught a cold of sorts, feels like flu or pneumonia. I came home early today and just laid, leaving Megan there, which I know mom was in good hands. The Hospice nurse and case worker came, both were nice, the Chaplin the other day, which I didn't meet but mom and Megan said was nice. Mom can now turn herself too!!! Denise even had her setting up for a brief period. I know mom is terminal, I'm not in denial, but I also know that we leave no faster than God calls us, and in the meanwhile, I want her to enjoy while she has. Selfishly, I'd keep her from now on. She wants to walk again, and maybe she can and maybe she can't, but only time will tell. Meanwhile, I have to have a little faith, faith that if it is is His will she will, and if not she won't. Either way, we have to try. It is 220am, and I can't sleep. So I write. I think even my thoughts hurt these last couple of days. Read Sally's email, she is back home, she was in the hospital, but on her way to recovery. It occurred to me today while I was feeding the cows. We are all terminal, but only the lucky ones know it. We feel the slip each day, day by day... and that makes us enjoy what we have more than want what we do not have. Sometimes blessings come through pain and tears.        

02-06-2014

  It was a long day, seemed like everything kind of crashed together, and some things didn't have to. I was tickled that mom's equipment came in today, until I saw the bed. The 2 young men that delivered it and set it up were nice, which was a plus, but then the bed. I mulled it over back and forth, talked it over with mom and she thought the same as I did, it should have wheels. Kind of flimsy looking too. So I started what seemed an endless search for who was in charge of mom's Hospice service to request wheels. The whole bed seem to snap together so it shouldn't have been a big deal to add them but it seem to grow into a big deal. For that matter, figuring out which division mom comes under. Meanwhile I was all everything is great to mom, she never suspected a thing. We still aren't sure who supplies what, us or Hospice, but if mom comes home tomorrow we will be. A lot of the day was spent fighting over a bed.

 I spoke with Pulmacare (spelling ?) and they would not provide mom a bed with wheels, a guy named Mike said they didn't supply Hospice patients with beds with wheels, but they did have them. Hospice said they thought all beds had them while this guy said not for Hospice. He was rather belligerent over the phone and I guess thought I was just talking when I said I would get them to look elsewhere. I never threaten. I called McFarland Medical, who said they supplied beds with wheels, but would have to have an order from Hospice. I told them expect a call. The lady over mom's division of Hospice was nice and when I told her Pulmacare wouldn't but McFarland would, then called to have them pick up their stuff and was ordering mom's equipment through McFarland Medical. Tracy had our backs on that one and understood when I told her it would be better to have one that moved to clean up in case mom had an accident. Shortly after Tracey's call we got a call from a lady at Pulmacare, asking if we would be available to swap out the beds. I told her they could call and come after their stuff whenever, but it needed to be gone before the new company brought their equipment. Then she said they wanted to swap beds, if that was ok, and boy how I wanted to say no. I told her that with Mike's asinine attitude that Hospice was changing over the order and that it was up to Hospice, which the lady said she left it up to you. Due to the nice young men who brought the equipment, I agreed. Note this: If I had based it on this guy Mike's service and distant attitude I would have said no. If it was that Pulmacare wanted to do the right thing, when they were forced to, I would have said no. I got respect for the fact that McFarland Medical was doing the right thing for their customers because it was the right thing to do. As for Mike, I hope you will come upon someone like you when you really need something, maybe then you will become a decent person.

  Meanwhile, tonight I try the new cream Denise found that we had left over from God only knows what. I read about it last night, ain't crazy about the side effects, just worn down. It is called Triamcinolone Acetonide Ointment, and still in date. I looked it up and it is used for many things, of which is NHL, CTCL. I am at the itching that can't be ignored in some places and into the pain in others. It is the worse I have had an outbreak yet, over 75% of my body, so if this brings some comfort so be it. I go the 21st to see a new doctor Sally recommended, she has the same kind of cancer. Its in the T Cells so not a whole lot I know left to do, and Sally is not only a victim of this, she is a retired nurse as well, and has had it longer and at a more advanced stage. I didn't hear from her last night, the night before last she was sick and had a fever, if she don't email me tonight I'm officially worried, more so than I already am. We have been friends for years now and I briefly was friends with her late husband, who also had this stuff, and a retired doctor. I know she has an appointment with Zic at Vanderbilt soon, just don't remember when. I like Zic but that is a long drive so I'm switching to a doctor at UT.

  Been a long day.