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Update from the Farnhams

Hi Circle Family, Did you hear we actually got snow? The kind I like...it's gone by the time I get up. I know I always write long updates?I?m just sharing our lives with our friends. WE ARE BLESSED ABUNDANTLY.  This does not make my heartache less painful.  I am thankful through the pain and thankful for the pain. GOD has taught me things I could not have learned any other way.  But still, I hurt deep. I know one day He will call on me to use what He has taught me. It?s been a struggle since Mike came home from the hospital a month ago.  A continual downward spiral?mentally and physically.   We have turned the page to the next chapter of our story.  I need wisdom and direction in a way like never before. Yesterday I spoke to a really nice lady at a local hospice.  She gave me tons of information, but I don?t know what I need. Everything she named off I?m managing. Mike?s needs are complicated because of his continued hallucinating and confusion.  His mind is distant. He can be looking straight at me and I can ask him a question and get no response?even asking more than once?he just has a blank stare. I know from everything I've read about PSP that Mike is still in there.  He?s trapped and can?t tell us he?s there. All outward signs say he?s not.  About four days ago he was trying to tell me something. I was able to figure it out.  He was saying, ?I?m praying for you.?   A couple of days ago he said, ?I love you? without me saying it first.  Of course, when he says those things then I feel guilty for all the times I lost my patience with the outward symptoms.  I admit, this is challenging me to the max!  I've never hesitated to pray for patience!!!! He is still sleeping on a mattress on the floor. He fell off of it five times last night.  I have to get him back on the bed and propped back up because of his feeding tube. He can?t lay flat.  His leg and arm trimmers when he sleeps or naps are wild. I've had to hold down his legs several times to stop it. It leaves him panting heavy.  I can?t move him with the walker now.  He is totally confused directionally.  Instead of stepping toward the chair or bed he steps away from it or starts to turn around.  A six foot man-plank with no balance is more than I can physically maneuver when he?s not cooperating and unpredictable.  He is a resistance training workout!!! .  I can?t put him into the wheelchair by myself. His body stiffens up like a plank and he goes straight back EVERY TIME instead of bending at the waist. To fix this mobility issue, I had this ?brilliant? idea yesterday to move the floor-to-ceiling disability poles from the bathroom to strategic locations next to his recliners and bed.  Then he could hold onto the sturdy pole and lower his self into his wheelchair. I?d be able to wheel him back and forth from the bedroom to the family room.  We used the poles and wheelchair this morning a few times?WORKED AWESOME!!!!    THEN?three different times today, while hallucinating, he grabbed the pole next to him and pulled himself up. He can?t reason out in his head what to do once he is up.  One of the three times his hands slipped down the pole and he was desperately gripping it hanging 10 inches above the floor.  Another time he spun around and was hanging over the end table.  I HAD TO TAKE THE POLES DOWN TONIGHT.  I can tell him not to touch them until I?m blue in the face, but when he hallucinates he is in another world and all rules are out the door.  I've probably got a list of 50 do?s and don?ts that I waste my breath repeating over and over. Today, I sent an email to his neurologist asking about medications to settle him down.  I waited, not wanting to jump into new drugs hoping it would settle down, but it?s not, it?s far worse.  So we wait to hear from the doctor. I told Dr. Mike that my creative genus is all tapped out. I?m totally at a loss on how to safely manage Mike?s mobility and sleeping needs. Not to mention the unpredictability of his mind. PLEASE, MY JESUS, MAKE A WAY for me to safely move and protect Mike so I can care for him at home until YOU call him HOME.  Please calm his busy and confused mind.  We trust that YOU know what is best.  Please renew my strength and my joy to finish this journey well. JESUS, PLEASE POUR OUT BLESSINGS ON OUR PRAYER PARTNERS! We love you Circle Family, Mike & Sandy