Today, I brought Trent to a hospice facility.
I struggled a little with this decision. I first had to reconcile to myself that I would have to make this decision without his input. I want to do what is best for Trent and what he wants. Those 2 things don't always mesh. I look at him and watch him grow weaker every day. I think about the logistics of our house - tiny doorways and walkways, tiny bathroom. I wonder how much weaker he will get before this is over. Even if I can handle his care now at home, will I be able to if he gets much weaker? Honestly, I just don't know. I see how hard even a little bit of noise and motion are on him, and I know it is not realistic to expect the kids to be silent and still all of the time they are home. There is also the factor that at home I am more than just total caregiver. I am also Mom, and there are dishes and laundry and phone calls and clutter and homework, etc. - all while keeping things quiet and still. When I am spread that thin, am I really doing anyone the good they need?
I know my kids need me. Trent needs me, too. I can meet my kids' needs and still have them feel secure using the help that has been offered to me. Trent has requested that I be with him - that is what makes him feel secure right now. His needs are for a brief season. I have put much prayer into my decisions and have gotten counsel. I know some people may disagree with my choices, but the fact is that I have to make the choices that I feel are best, and I am at peace with the decisions I have made.
The plans were set in place yesterday. The social worker ordered an ambulance transport, but when she said that, I saw a look on Trent's face that I really hate to see -- It was a look that tells me he feels things are being done to him rather than for him. He also thought that I was sending him away and not going with him. I stepped in and told her that I would bring him in our van. She really never agreed with me, but it is my choice; and I want to do what makes Trent feel the best as a whole - physically, mentally, and emotionally. Dr. Illig agreed with me, too.
I have had to talk with Trent several times about this decision -- he doesn't remember many conversations. I talked to Trent about the facility and told him I thought we should give it a try. I talked about the fact that it is a little bit more like home - definitely less clinical, but offers advantages we don't have at home -- an easy-to-maneuver set-up and less busy-ness. I did tell him that, if he really doesn't like it, we don't have to stay. I felt badly because he really never agreed to this - I think he just resigned himself to it.
Even though he has had much confusion lately, he was surprisingly lucid this morning. He could answer all of Dr. Illig's questions. He knew where we were going and why. He said to me, "So this is where I am going through the end of my life?" Oh, how I hated to answer that question! I answered that it did seem likely. Then he asked, "Is that why you've been so quiet about it?" I told him I had been quiet about it because, first of all I hated to see him upset about it; and the second reason is that I don't like to think about it because I will never be ready to say goodbye.
The emotional weight of the day has been great. The conversations were heavy. There was a great deal of finality in leaving the hospital. I really have no words to describe the emotions of bringing Trent here. Many times today I have cried out to God to strengthen me and to direct my focus and to rule my emotions.
I don't know that I've said it here, but I have told friends that this has been such a journey of trust and surrender. Trust that God has a plan, that He will give the grace and strength that I and the kids (and the rest of the family ) need, that He is in absolute control. Surrender of our plans, surrender to His will, and to His timing. When I purpose to trust and surrender, then I can have His peace. It is God's grace and peace that carry me through each day.