Dear Diary
It has just been a little over two weeks since I lost my dad. It is still very hard not to cry every time I think of him. We were very close, I was daddy's little girl. I am the oldest and the only girl. I guess that makes me the favorite. Daddy's favorite daughter! I cared for daddy during his battle with lung cancer, so we made lots of memories & got even closer I guess. This is why it's so hard I suppose ? I tried to prepare myself since he was diagnosed, January 31, 2012. I didn't do a very good job I guess, because this has been very difficult. I look back now and wish I had written more about our journey (dad and I) I usually write everything down, everyday and sometimes more than once a day but for what ever reason this time I didn't. Only God knows I guess why I didn't, I do still have the memories. Looking back I wish I had written about his experiences to be able to help others. I wish I could write some sort of manual they could give you when you are diagnosed with cancer to help you and ease your pain, but maybe that was not meant to be right? I would like to maybe write something from a caregivers point of view to help others? It would have been nice to have some sort of place to go for resources, ideas and other helps. I would like to have a place for recipes & ideas for how to organize medical lab results ? Toward the end (last 6 months, wish I had done it from the beginning) I got a three ring binder & sheet protectors, every time we went to the doctor I put the paperwork in the three ring binder newest on top. This was a help when we called Hospice in. The nurse would ask a question and I could go to the paper work and find her the answer (if I could not remember) I also used a spiral notebook the last month he was alive, I recorded when he got up, when he took medicine, when he ate, etc. This was extremely helpful. This sounds awful but you need to keep track of food intake and output. I wanted to be sure daddy was as comfortable as possible so I wanted to be as organized as possible to help him the best I could. I put his medicine into a pill organizer to be sure he had taken them for the day, because the days run together and you think you have taken your medicine and you have not. The three ring binder helped when going to several doctors, this way I could say when his last chemo treatment was or how much he weighted on which day, even what his blood pressure was, all of those things at times were important I found that having the information at my fingertips helped me. I kept all his appointments in a calendar that I kept in my purse. I kept doctors phone numbers in it as well, this way when I needed a number in a hurry I went right to the back of the calendar and there they were plus if I needed a number while we were in town the calendar was in my purse. I also had a little pill box that I carried in my purse I carried one day of all dad's medicine in it. This way if I needed one of his pills or we stayed some place and I wasn't at home I had his medicine. I also kept a "hospital go bag" ready behind dad's favorite chair. It had a change of clothes for him & me, t-shirt and shorts (I could sleep in), house slippers for dad, cell phone charger, gum, mints, word search book, pen, flashlight, as well as box of pop tarts. I had it ready for whenever I went to town with dad I never knew when he may end up in the hospital for fluids. He got dehydrated about every three weeks or so when he had his chemo. I just grabbed when I went out the door to the doctor, it was easy to pull because it had wheels. I kept it in the bravada so if I needed it I had it. I made it nice the couple of times I called the ambulance for dad because it was already packed I didn't have to think! I also had all his pill bottles in a zip lock bag that I would grab so they would know what medicine he was on & the dose. I even had the OCT medicine in there. I wanted him to be as comfortable at the hospital as he was at home. I think digital maybe better than paper in some ways, you might be able to search things quicker ? will need to think of this one. I did use a digital calendar when we first found out dad had cancer then anyone who had user name and password could access it to find out appointments. If I had had an Ipad or Iphone the digital may have been better and easier. Use what you have available to you. For me the digital seemed like a good idea (which it was) It was just more time consuming for me to put it on the computer when I got home so I found that a small pocket calendar was a better match for me. For the first year I had a calendar book that was about the size of half sheet of paper it had places for phone numbers, address book in the back which was nice but it was big and once in awhile I forgot it, the beginning of 2013 when that one ran out I found that the small pocket one was perfect it was always in my purse (not lost somewhere) I took it out at the doctor when they gave us our appointments and wrote it in right at that minute so I didn't forget. I still stuck the little papers they give you (appointment reminders) in there too (held them to the page with paper clip) this was in case there was a problem with the appointment (which did happen on occasion) another reason I keep all papers in the three ring binder was because when dad some times had tests they wouldn't' have his orders it just made it quicker if I had a copy of the orders too. I also took a small lunch with us and snacks. It would make it easier if doctor would want to send him for tests right away We didn't have to eat out (costly and not healthy) I had small insulated lunch sack and I put in blue ice. I also took bottled water for dad. He got thirsty it seemed and water was better for him than stopping to get a coke not to mention cheaper. Just for us because dad had problems with his prostrate I kept a urinal in the car (from recent hospital stay), I also kept baby wipes and Ice cream bucket on the floor in the back seat. The ice cream bucket we used if he felt he was going to be sick. (it was a life saver a time or two) I bleached it if we had to use it. Then I put just a little dash of Odo ban in it to keep it smelling fresh (I kept the lid on it this way if he got sick I could put the lid on it so it wouldn't spill inside the car) I know this is not very organized but I am writing from memory, when I think of something I just add it. I kept a box of Kleenex near him too. I put a Wal-Mart bag on the gear shift in between us as a trash bag and if he had to cough up something he would use the Kleenex and toss it into the bag. (I know it sounds gross but it was a big help to me, instead of pulling over digging through the glove box looking for tissues. (plus it kept him from coughing it onto his clothes which would have been much worse) oh yes, I had hand sanitizer in the console too I tried to have him use it if he coughed up something. Speaking of hand sanitizer. . . when we first found out daddy got sick Amber went to Sam's club and bought Gloves, Wipes, Masks, Sanitizer, Lysol, Odo-Ban, liquid soap for all the sinks. I bought the 100ct plastic gloves that they use in the deli to use whenever I was in the kitchen. I didn't touch anything without those gloves on. It didn't matter if I was fixing something for him or the family I still used gloves everyone else used them too. I got 10 packs of 100ct. I put them in the draw to the left of the sink every time somebody would go to the kitchen they would get a pair of glove before they would begin to prepare anything. If anyone thought they may have been around anyone who was sick or if they felt bad they wore a mask! We sprayed Lysol onto everything all the time. I used Lysol wipes to wipe everything down too. Everyday I cleaned computer keyboards, remotes for tv, telephones, cell phones, door knobs, I was probably as close to a "germ a phobia" as you could be but I didn't care. I didn't want my daddy getting sick. I think dad only got sick once in the year and a half! Let me sing the praises of Odo Ban. I put it in the laundry, dad had accidents often because of his prostate problems so I used it took get rid of urine smell. He also had diarrhea often because of the chemo it helped with that as well. I used odo ban in the laundry, to mop floors and as spray deodorizer. I will write more later, I want to write about my experience with Hospice too! They were great, I didn't get to use them long but they were wonderful!!!
Recap:
- Medicine bottles in zip lock bag (prescriptions and OCT)
- three ring binder with paperwork and lab results, paperwork from prescriptions
- calendar with doctor appointments (kept in purse)
- hospital go bag
- extra day of pills (kept in purse)
- spiral notebook with daily activities (when ate, took meds, unusual pain, symptoms)
- lunch, snacks & bottle of water
- ice cream bucket with lid
- urinal &baby wipes
- also kept box of Kleenex for dad (he coughed and spit up stuff often)
- Gloves, masks, sanitizer, Lysol (spray+wipes), odo ban, liquid soap at sinks
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