3:13 p.m. Today's project was to attend our usual second service at church. Steve started moving around in the dark bedroom at 4:38 a.m., which woke me up, but the caregiver's arrival at 5 a.m. allowed me to go back to sleep. Blessed rest! You don't appreciate slumber until it gets disrupted. I was so thankful for God's gift of rest in the morning..
Being awakened in the wee hours certainly causes one to use the time to pray; in my case, for Steve to be healed and sleep normally, and, an issue that's never far from my mind, asking my Father what to do when he begins fully "sundowning" as dementia patients often do, being fully awake and active at night. Hire an agency caregiver for 10 p.m. to 8 a.m. for the home (which would cover until the bus comes Monday through Friday) or a residential placement? There is no one answer that suits every family.
The tricky part is, that the more expensive hourly care I hire now, the fewer funds I will have available for the day when residential care becomes a must for medical and safety reasons. My desire is to have choices, not to have to settle for a nursing home that Medicare/or Medi-Cal would completely cover. Steve and I have, by God's grace, worked too hard and sacrificed too much for him to end up neglected because of a crowded or understaffed facility that doesn't have the capacity to create a pleasant atmosphere specifically for dementia victims! I must continue to pray and trust God for the timing and perfect answer for Steve's needs, since He is the one who laid it on my heart to begin looking for more professional future care. Isaiah 30:15 says,
In quietness and confidence shall be your strength.
Steve has been walking better lately, due, I think, in the physical realm anyway, to the organic supplements our son has been providing for us. Our walk from the handicapped parking space to the sanctuary door went smoothly, once I got Steve backed up enough that the closing passenger door wouldn't hit him in the head, and then turned him around to walk in the right direction.
During the worship songs, Steve was very attentive, not singing much any more, but keeping his eyes closed and and his hands lifted a bit. The Holy Spirit has always ministered to him through music, whether at home or in the car. The two of us used to sing to and with our children every night--he has a nice voice, and in musician son Kriss' words, "Dad never misses a tone." I do hope Steve gets his singing back, even if it is just a silent moving of his lips.
The weekly problems start with the sermon. Steve' head goes lower and lower, until I have to "stage whisper" for him to "sit up and look at Pastor John!" at least 12-15 times per message.(We have been sitting in the last row so no one will be disrupted by Steve's leaning over or dropping anything). I ponder just letting him sit there for 45 minutes literally bent in half, so I can focus on the Word, but he seriously could tip over and fall down, or at minmum hit his head on the back of someone's chair, and not even wake up.
I suppose that getting up in the early morning could make Steve sleepy when sitting down, only this is just an extremely exaggerated case of his dropping off at church since the time I met him 32 years ago. Of course, the difference is that back in the day, he would wake up and be alert after a reminder. Not so now. He is oblivious as to what everyone else is doing--listening and following in their Bibles--and doesn't know which direction to turn his head once he lifts it up. With a jumbo screen on each side of the pulpit, it's hard to miss the speaker's face. So, so sad...
At this time, Steve's involvement in the worship is plenty reason for me to keep bringing him to church, because the music ministers so strongly to him. As at every other step on this tragic journey, God will give me a peace, and the appropriate action to take.
Amos 3:3 asks,
Can two walk together, unless they are agreed?
May I walk in agreement with my God, in regard to His child Steve!
Sunday, May 20, 2012
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