When my dad was diagnosed with invasive bladder cancer and colon cancer in May of this year, just 3 ½ months ago, the urologist told me he thought my dad would do okay through this summer and fall and start having problems as winter began. While that didn’t seem like very long, it still seemed like we had all the time in the world.
My dad weakened a lot over the weeks, and plans we had made to take him to see the new fire station (he’s a retired battalion chief), and to the casino were postponed when he didn’t feel like going on the days that were planned. I had no idea at the time that the time would never come.
When my dad first began having the hallucinations, we weren’t sure if they were caused from dementia, which was possible but unlikely due to its quick progression, or if perhaps his cancer had spread to his brain. At first, the hallucinations were just every once in a while. But two weeks ago he was up walking around and actively hallucinating 24/7 on Monday and Tuesday, causing me to sleep with one ear open at all times, and having to get up at least once every hour to calm him down, give him meds if it was time, and put him back to bed, just to hear him up again in another hour wandering around. He slept part of the night Wednesday night and I was relieved to get a little bit of sleep. However Thursday and Friday we were back to 24/7 and a constant vigil, and ultimately Friday night he fell. I found him face down in the hallway, uninjured, but completely unable to help me get him up without assistance from my husband. After a full week of me not sleeping for more than two hours at any given time, I called hospice in tears.
The hospice nurse suggested that we transfer him by ambulance to their hospice house where he could spend a few days trying to get his medications figured out in order for him to sleep at night so I could care for him again at home. By the second night there, however, his health began to plummet and the realization came that he was not going to be leaving the hospice house for home. Ever. The doctor said that death was very near; he suspected within the next day or two. We kept a constant vigil by his side, but as of my writing this, a full week later, he is still there, alive but struggling.
It seems like the only thing harder than being a caregiver is having to NOT be a caregiver and watch your loved one struggle to pass on. I feel guilty for not being able to allow him to die at home, but relieved that there is such a place as this hospice for him to remain. The facility is beautiful, as are all the employees. But while caregiving in the home is sort of a day to day survival, this has now turned into an excruciating wait, not wanting my dad to die, but not wanting him to continue to live this way. He is rarely awake and alert and most of the time when he is, the fear in his eyes just destroys my heart. I hate to have him be sedated constantly, but I certainly don’t want him to lie there being afraid.
So we sit with him, hold his hand, pray, read, talk to him, talk with each other, and reassure him that we are there. We have all said our goodbyes, told him we will miss him and it’s okay for him to leave us whenever he’s ready. But apparently he isn’t ready yet. As difficult as it has been caring for him 24/7, at least I had what seemed like some control of things. This watching and waiting is even harder.
So, my blogging days are coming to an end, certainly a whole lot sooner than I anticipated. I’ll be sure to let you all know when it happens. It could be tonight, or he might hold on another week. I’m trying to just get through each day, loving him and trying to let go.
- Taking Vacations, Hallucinations, Dealing in General (caregiving.com)
- My First Blog – An Introduction (caregiving.com)