I am amazed at how quickly things have changed. Just a few days ago the chemo had robbed so much strength that every step Daddy took was a teetering brink of disaster and I was sure he and I would both end up on the floor even when using his walker and a gait belt. I feared every sound would wake him from a nap and bring about a new barrage of incoherent confusion. I don't know how else to relate it, but it sorely reminded me of when the girls were babies. I slept when they slept. My eyes and ears were in tune to every breath and movement they made to guard over their safety. That is life with my daddy now.
Things are a bit different now. We have started him on a medication cocktail called ABH which is an acronym for Adivan, Benadryl and Haladol. I know using the drug Haladol brings concern for many because of its reputation. Frankly the hair stood up on the back of my neck when our hospice nurse first suggested it. But I have now learned that the combination of the three together offsets those side effects. For us it has become the key element in balance for Daddy.
The ABH is counteracting the agitation and anxiety along with his confusion to a certain extent. The nurse says that over time the chemo treatments have really taken a toll on the cognition firings of his brain. Like I said before, it is how his body has shown over time to handle stress. We are all realizing over time we saw signs that he was pretending and going with the flow when he wasn't sure about things. We attributed it to him waking from a nap or confusing the days because he didn't get out of the house much. It was so much more than that but he didn't want to admit it either.
The ABH is helping to balance that out. Eventually we will need to increase his dosage as things progress. For now his time line is blended with a somewhat manageable mix of past, present and dream images all at the same time. He knows me as his daughter, trusts me to answer all of his questions and do all things for him. At the same time he questions several times a day who's house we are in or when I decided to move away from Phoenix (even though I have never lived there). He will regularly ask me to get his brother George from the next room (who died some 45 years ago) and then, like last night, cry at his own admission that brother Marvin will be the last one alive of all the 6 boys. I have to give him constant directions around the house because he forgets where items as well as rooms are and often thinks we live in a 2 story home instead of a ranch style. Last night when I told him it was a one story home again he sighed, looked me in the eye and said, "Julie, just go ask your mother and she will explain it all so you can understand ok."
This morning he was too agitated to sleep so I gave him some mail to open. I don't mean it to sound bad by saying I did it to occupy him. It is just that his brain needed something to focus on. He can't focus to read what he is opening but he knows the envelopes need to be opened and it calms his need of knowing he is supposed to be doing something.
Physically his strength is returning from the run of chemo. He is more sure footed and I stopped using the gait belt 2 days ago. His strength doesn't last long as we found last night when he wanted a shower. It took us both a hour to complete the task because of needing breaks. I think from here on out I will arrange for a bath aide to come by a few times a week.
Over the weekend my step siblings and cousin came over for a meeting so we could all be sure to be on the same page of understanding. While I know they have their own lives: families, homes and jobs to tend to....I have asked for help. I can't keep watch over Daddy 24 hours a day with no breaks at all and they totally understand. I have asked for a minimum of one day a week to run errands and get away and 2 nights a week to get a full night of sleep with no worries. I also posed to them that while I can sometimes pick up the phone to call for help, I need them to be making most of the effort to check on us. Much of the time my hands are too full to think of grabbing the phone for balance. They understand completely and want to do whatever they can to pitch in and help; not only for my sake but for spending time with Daddy.
There is only one in the family that refuses to come over right now because it is too hard to accept and see Daddy this way. I Know it hurts greatly. I understand and can only pray that God and time will heal the painful reality before the are regrets.
For now that is all I can update you with.
Thank you so much for your faithful consistent prayers and encouragement.
God bless you richly as you go about your day.