Monday, April 9, 2012

They keep on telling me, Part 1

8:15 p.m. Today's project was to meet with nurse Penny Brown from Genworth long term care insurance for our semi-annual assessment of Steve. She stuck with the detailed questions for me this time, and skipped the "Mini-Mental" exam, thankfully. Steve has failed it every time, from question #1, "What day is it?" His most recent test was last Monday with the doctor at Anderson Clinical Trials. He has tried to run out of our house, as well as the neurologist's office, crying and shaken. The cruelty of this disease is that a person is aware of what is happening to their mind--they don't just suddenly "lose it."

The Lord gave me the idea to have the meeting at the kitchen table where I served Steve Ritz cheese and cracker rounds. That was she could observe his lack of speech; wobbly gait getting to the table; the constant struggle we have getting him to sit down on any height or type of seat; his difficulty picking up the snack and putting it in his mouth; his trouble setting his water glass down on the table between sips; and his eventual spilling it all over the table and floor.  [I choose not to react to these accidents, but keep things low-key, just getting a towel from the garage and cleaning it up]. I've learned to trust the Lord for my attitude change, because I am normally a super-quick, impatient person! It's been humbling, but Psalm 25:9-10 reassures me that,

The humble He guides in justice, and the humble He teaches in His way.

This is the second assessment meeting with Penny where she has said that I have absolutely got to get more help--whether more from family; or more days for Steve at Care Connexxus daycare (to stop the patchwork care scheduling I do now, and cause insurance dollars to be spent more economically). She was very insistent that I can no longer be the one mainly caring for Steve, because of the physical pain and damage I already suffer helping Steve get to bed, when he just stands or sits stiffly,  not comprehending his role in helping change his own clothes. He already has to be bathed, shaved and dressed, and helped in every personal way. Even the caregivers have a more difficult time at his 7:30 bedtime. He's ready for bed and goes right upstairs (with guidance). But grasping directions like "bend your arms?" He just doesn't seem to comprehend simple movements any more, even though he's in good physical shape..  At least he sleeps very well and comfortably all night!

But the very experienced nurse was insistent--"You cannot move around a person so much bigger than you! You have to have more, even 24-hour, help!"

Proverbs 12:15 says,  "He who listens to counsel is wise," and I agree. It's just that some counsel is hard to take and put into practice, because I don't want to pressure others for help, or think 6 months ahead from now, when our home may no longer be suitable for Steve's care or safety.

Tomorrow, I'll be taking Steve for his annual physical at his Medicare provider CareMore. I can discuss some care options with him or her. Right after that, we'll be headed to see his neurologist for her best advice, especially about medications at this stage. Please pray for strength in my shoulders and arms, because in order to walk along with me, Steve has to be physically moved along as we link arms. Again, he sees himself as cooperating and is quite cheerful as we go! Praise the Lord he isn't one of those surly dementia patients that make some family care givers absolutely miserable!

Changes are coming swiftly for Steve and me, as are urgent admonitions to step up his care level. The Lord will be mighty in our behalf, of that I am sure. Lord, let me listen, pray, and obey Your voice through Your wise and compassionate servants!

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