Greetings everyone. This is Jim's third son, Chris, again. I am writing because Dad is in no longer in any condition to comprehensively express his experience. We have seen significant physical decline this week, to say the least. Further, his windows of lucidity are becoming shorter and sparser in number.
Two days ago, during one of these moments of alertness, I asked him whether he wanted me to continue with these posts in his stead. I know that he cares that this community has an honest look into the hospice experience so others can know what to expect and prepare. This concern extends to loved ones and caregivers as well. I took his answer of yes as further affirmation of his continuing intent to help others through this website.
Consequently, this post will be directed primarily at the caregivers - what we are seeing, and steps we are taking to relieve confusion and suffering. It can be bisected into two parts - before moving Dad to the hospital bed; and after.
Last Friday when Dad wrote his post, he was still in his own bed, and in his own bedroom. He had previously expressed a desire to eventually die in his own bed, a place where he had spent significant time together with my mother, and I imagine, where has had had many conversations with our Lord. However, he had become acutely aware of the increasing pain in his most "comfortable" positions, and it was becoming increasingly difficult to provide adequate care on a King-size bed while still attempting to make trips to the bathroom or to use the bedside commode.
Nitty gritty details follow: Bathroom trips had become a three-person affair. Dad, plus at least two helpers. While dad walked from the bed to the bathroom, he would need to be steadied and led, while followed by the other. Someone would have to hold his bag with intravenous medication and "dance" with the tubes to move it around him as he made his way to the toilet. One of the most painful parts of this process for Dad was what he referred to as "docking," - sitting down on the toilet. It is vital at this point to have adequate hand rails and countertops at appropriate heights to assist in steadying him down onto the toilet. His skeleton is littered with tumors, sending nerve pain all the way through his body from any movement or jostling. Absent hand rails or countertops, you can hold his hand to steady him. One time I used too much force, which overtook his ability to stand while holding my hand. I realized I needed to simply steady him, as if spotting someone while lifting weights in the gym. This proved much more helpful to Dad.
The most precarious part of bathroom trips was to follow - making it back to bed, and into it. We would once again "dance" with the bag of medication and its tubes, while maneuvering Dad into a position where he could sit and lay back onto his side of the bed. This also involved himself "inching" his way back up to rest on his pillows, always a painful proposition. The final time doing this was last Sunday, where he got stuck too far down on the bed and no longer had the strength to move himself up. We had a frank conversation about our ability to provide him care in his bedroom, and advised that a hospital bed was in the living room that would lead to more effective care. He agreed and he gathered his strength for "the last dance" to the living room.
The bed in the living room has been outstanding. It's narrow enough to where we can stand on either side of him, and we can raise and lower the rails on the side as well. He has used them for leverage, both while laying down, or standing up after using the commode. Further, the head and legs can raise and lower, allowing us to mechanically place him in more comfortable positions without the need for him to use his strength to do so. While he's still in significant pain, I believe it's less so with the use of the hospital bed.
Dad hasn't left the bed since Monday. We are blessed to have a mother who is committed to providing 24-hour care, while us four sons coordinate schedules to ensure there's always at least one of us present, staying overnight, and ready to help at any given time. Dad's mental acuity has declined significantly in the last few days. I would estimate we've had less than an hour's-worth of true awareness and alertness to what is going on. With that said, it has been fascinating to see where his mind has taken him during this time.
He asked my younger brother where he should put out his cigarette, even though he hasn't had a cigarette since the 1970s. When a hospice nurse was scheduled to arrive, he asked me to check the living room for classified weapons of mass destruction - a clear call back to his days in the United States Air Force. He became genuinely frustrated yesterday with me and my mother, because he thought he had duties or an appointment with the Red Cross, the place where he last worked before retirement. He became even more upset when we couldn't hide our smiles, but it was proudly clear to us his sense of duty was once again overcoming his own personal discomfort. It reminds me of when he broke his arm while playing basketball in the Air Force years ago. He refused to wear a sling on duty because it prevented him from saluting. With his broken arm.
Through all this, the one thing that has snapped him back into the present is prayer. He is no longer initiating it, but becomes acutely aware when others are praying for him. He joined in with me yesterday, and I while I could not comprehend the words coming from his mouth, I knew that God could, and that God could also reading the subtitles on his heart.
I've also come to realize for the first time that Dad is very tactile, in that his hands unconsciously fiddle with things in reach. This is ok when it's the rails of the bed or an offline cell phone. It's less ok when he tries fiddling with the tube routing intravenous painkillers into his body. He likes to hold my mother's hand for long periods of time. Absent that, placing something else in his hand, like the end of his blanket, can help protect the tube. It does make me nervous when he holds his phone now, because it's only getting heavier and I'm worried he is going to drop it on himself.
Finally, I wonder whether the lighting in the living room contributes to the hallucinations or delusions Dad has experienced. The Red Cross incident happened yesterday morning, where he was bound and determined to leave the bed and get to work. At this time, we had the overhead lights turned off, and had softer lamp lights gently illuminating the room. After that we turned on the main living room lights for most of the day, and I noticed more effective awareness of his surroundings. I wonder if the softer lights contribute to a more dream-like state. Just a personal observation with no basis in scientific fact.
A couple weeks ago, Dad expressed how much he appreciated the gallows humor from some of posters here. He, himself, joked that he thought he might get out of Christmas shopping this year. Well Christmas has come and gone, and I don't think he has considered the fact that he may be subjected to a terrible rendition of Auld Lang Syne tonight at midnight.
I can't express our thanks enough for the continued well wishes and prayer. My own prayers have been reduced to the simple and ongoing request to ease Dad's suffering. There is no way for us to know how much longer until Dad is in heaven. It could be a matter of minutes, or even weeks. My Dad's younger sister referred me yesterday to Psalm 139:16, where it is written all of our days are ordained and written in His book before any of them came to be. Therefore, whether it's minutes, hours, days, or weeks, the timing will be perfect. God bless.