Wednesday, October 5, 2011
That didn't work out so well
2:22 p.m. Today's project was for Steve to go for a "trial day" at an adult daycare center. The center is highly recommended by people I know whose Alzheimer's-affected loved ones attend, and after Steve realized that nobody lives there, and he wasn't being sent to a rest home, he agreed to give it a try for a few hours. This has been a matter of prayer for me and for others, and encouragement from them, too, to provide solitary, quiet, concentrated time once a week, for me to get started on the book God has placed on my heart and is gently but persistently urging me to begin. And even more convicting is what Jesus said in John 15:14:
You are my friends if you do whatsoever I command you.
That word doesn't only refer to tasks that are easy, convenient, or agreeable to all concerned. I have found myself hesitating, and that is a form of disobedience!
I woke Steve up before six o'clock, so we could arrive by 8:45. Staff had already scheduled him for his intake day, so we needed to be there on time. The two of us had our devotions. Soon it was time to wake up our grandsons, with a courtesy 15-minute warning, so they could make their 7:15 deadline. The plan at the center was for Steve to join the group activity, and for me to spend about 45 minutes with a staff member filling out detailed paperwork. Then I would leave with the boys, making some stops at local businesses to raise support for donations of wrapped hand cream gifts for the participants in the daycare program's Christmas party. The three of us would then go to the nearby mall and have some lunch. Steve, meanwhile, would have a number of activities and a lasagna lunch with all the trimmings. We'd be back at 1 p.m. to pick him up. The normal schedule is 8:30 a.m. -2:00 p.m.
As Steve and I talked with the nurse-manager, she noted that he looked a little apprehensive. He agreed, but I kissed him and he went off in his usual manner with her to join the group. I went to an office and completed the paperwork. (The boys had decided to stay in the Jeep and play on their smart phones. Since they are high schoolers, I figured it wouldn't be child abuse if the vehicle was unlocked and the windows were down as far as possible with rain coming down)!
At the end of the paperwork, I made a fatal error, either suggesting, or agreeing to the staff member's suggestion, that I take a peek at how Steve was doing. Instead of having me look through a window from behind unnoticed by him, she walked me right into a hallway where he was sitting in the front row of a large group listening to the news and weather report being shared by one of several aides. Steve looked up, and I thought, came toward me as if he thought it was time to go. I said, "You're not going yet."
Steve suddenly yelled out,"I'M NOT STAYING HERE!" and came running down the hallway in a panic and rage! The staff member and I were utterly shocked, because had gone into the living room area very willingly, and he'd been seated calmly with everyone else and attentive. He ran up to me and said in a voice shaking, stuttering and out of control, "It's so dark in there! And they all keep staring at me!" Keeping myself calm, I led him to sit down with me on the couch, hoping to restore some measure of reason to the moment, and he weepingly said, "Am I that bad off?" (He assumed that no one there was as well-off as he is because some of them were in wheelchairs. The stroke victims probably have more comprehension than he does, but are physically compromised, so he took it to mean that they were "out of it"). I said, addressing his first remark, "It's dark because it's a rainy day. and the people were looking at you because you're new. Or maybe, because you can walk all right and look fine, they thought you were there to help them." He jumped up and acted like he was trying to stomp out, but that would be impossible, because the staff has to punch in a code to exit. So he calmed down a little bit. I said, "Let's pray," and he did pray that he would be compliant and get along with everyone there, and I prayed for him, too. But he was still struggling. He finally refused to stay.
The manager asked me to come into her office, along with other staff, while Steve waited on the other side of the glass. He stood there calmly waiting. She let me know that with me there, with a soft spot, Steve knew that I would give in to his demand to leave. I honestly told them that I had specifically asked not to be taken to a location where Steve could see me, and it was an error for me to be seen. The manager said that there is a whole group of people like him, whom he could do activities with and get to know. She said that since he didn't stay the entire time, he would have another trial day at no charge. But I need to just say goodbye and leave decisively.
So we will try again, with all of us more prepared next time. As I spoke with him privately at home about his behavior at the center, he was shocked--he doesn't even remember being there! I need to keep in mind that no matter how frightening, novel, or difficult the situation, his memory of events is nonexistent. Something he sees may trigger a problem, and he might have a poor reaction once again, but Steve tends to be very cooperative for others, being concerned with their opinion. And instead of wandering around the house once his chores are finished, he would enjoy a Bible study, exercise, games, and a creative activity on the Wednesdays he attends.
The Lord may have another answer, such as having a caregiver take him there, or take him out on a several-hour outing once a week, or a friend may even volunteer to spend time with him as Bob and Howard did earlier this year so I could write Galatians. Until then, I'll pray and use my best judgment as to a once-weekly environment that is safe, active, and encouraging for my husband in our time of need.
Knowing that this disease is not going away, and that Steve's deterioration is speeding up, I need to trust in God alone to see us through, and to provide the people and services we need to come alongside. I have no grandiose illusions of handling the un-handleable by myself! Just a few minutes ago, his neurologist's nurse called to say that his EEG shows "the minor brain damage consistent with his current diagnosis." So the physical evidence is there for what we know experientially and through family history. We'll hear more on October 20th, Steve's next appointment. I will turn to the scripture that has comforted believers through the centuries, Philippians 4:19:
And my God shall supply all your need according to His riches in glory in Christ Jesus.
And another exhortation of encouragement from I Thessalonians 5:16-18, NLT:
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.
Thank you, Lord!