Monday, May 20, 2019



I am very happy as I write this blog.  One of my friends from the support group has moved her husband Bill to The Piper!  Bill is about in the same place in the Alzheimer's journey as Bob, but he got to that point much faster, so Sheryl was faced with finding a place quickly.  She has been looking for places for ambulatory residents, but suddenly Bill wasn't ambulatory.  She had already been looking around (which I highly recommend not waiting until the last minute) but then her focus had to change as Bill became wheel chair bound.  She knew others in the support group (an added benefit of support groups) had been happy with The Piper.  She also called me and we discussed her options.  She had hurt her back trying to lift Bill, and a room had just opened up across the hall from Bob, so it became a done deal in just a few days!  Now they sit in recliners in the day lounge together where there is a TV,  and share meals at a separate table in the sunroom.  And now Sheryl and I can visit while we feed our husbands, and although they can't join in the conversation, we tease them and they just smile at us! 
While we are talking about not waiting until the last minute to make decisions, I have been going with my 86 year old friend Mac to look at different options in case her health conditions would suddenly change, say from a stroke or fall with followup rehab.  On our last foray, and with the suggestion of my elder care attorney, we found a wonderful place that we were both very impressed with.  They are associated with the Lutheran Church and have been in the same place for years, not one of the newer startups in the area that are having trouble finding staff.  They are the only place I have found in the area that takes Medicaid pending, which would be a huge help in the timing of moving to a facility.  But they also have about a 6 month waiting list.
I am going to relate two instances of proof of God's impeccable timing since my last blog.  The first is about the opening of the new Family Center at the hospital--now renamed Advent Health Merriam.  I was having Easter brunch with some friends and Joanne was telling me how she worked closely with the founder of the Infant Development Center, Lee Ann Britain.  She said when the flood came and the Center had to move, she asked Lee Ann where she was going to go now.  Lee Ann told her "Shawnee Mission Medical Center, but they don't know it yet!"  Lee Ann was that kind of person. And Joanne said she remembered Lee Ann talking about a "Bob" that helped her so much.  Of course now we know who the Bob was!  God's timing of sending a flood precipitated the moving of the Center to the hospital campus exactly at the right time!
The second story involves Bob.  I had gone out at lunchtime to feed him, and the nurse practitioner from hospice was there.  I had never met her, but she was very nice, and we had a nice chat, and she did a mini physical on Bob.  She had no sooner walked out of the door when Bob gave a blood curdling scream and went into a full grand mal seizure, which if you are not a medical person, could also be called an epileptic fit.  I have seen many seizures during my career, but it is always a horrendous sight, especially if you are not expecting it.  The convulsing of the muscles is followed by a period where they don't breathe, and they turn purple.  I yelled for the clinical associate to get the nurse that just went out the door, but then I looked out the window and saw her car drive away.  I wanted her to witness it as well.  After what seemed like an eternity Bob started breathing again, and I asked the CAs to put him in bed.  I called hospice to see if they could get the nurse practitioner back, but they said they would send his regular nurse.  While I was waiting for her, I went to Dr. Google and googled "seizures in Alzheimer's patients."  It said that about 25% of Alzheimer's patients have them, and it is a progression of the disease.  But it also gave a case study that one lady got her full capacity back for about a week after the seizure and knew everyone and could hold an intelligent conversation.  When the nurse came and was checking Bob I asked her "May I ask if the nurse practitioner was here to recertify him and was she thinking of taking him off hospice?  She sheepish said yes.  I told her I didn't know what I would do without hospice.  In addition to the moral support they give, they supply all the equipment and incontinent supplies.  I asked about that, and she said I could rent the equipment by the month.  I was afraid to ask how much it would be, as he has the special bed, the wheelchair, the lift, and the shower chair.  I asked if they would take him off hospice after the seizure, and she smiled and said "Not now!"  So once again, God's timing was perfect.  What if I hadn't been there to witness it?  They would have thought he had had a stroke.  He remained unresponsive for about 12 hours and then started waking up.  And wouldn't you know it, something got rewired during the seizure, and he was much more engaged and talking in sentences again, some of which made sense!  The social worker from hospice called me when she was there to see him a  week ago and told me he had told her he was going home, was going to apply for a job, and was going fishing.  I had just left an hour before, and he had not gotten to that level with me, before or since.  Wouldn't you know he would show off for the hospice worker?!  The past few days,  he has gone down again to about the level he was before the seizure.  Another example of the roller coaster ride that is Alzheimer's.
As A.J. Cronin puts it "Life is no straight and easy corridor along which we travel free and unhampered, but a maze of passages, through which we must seek our way, lost and confused, now and again checked in a blind alley.  But always, if we have faith, a door will open for us, not perhaps one that we ourselves would have thought of, but one that will ultimately prove good for us." 
Would I have thought Bob would have a seizure?   Absolutely not!  But maybe it was through the seizure that God opened the door to buy us more time on hospice.  And it was certainly well timed!

I leave Wednesday to drive to Tennessee to bring back our 9 year old granddaughter for the summer.
I know we will have a great time and be very busy, so I may not write a blog for a couple of months unless something changes drastically.  I am not getting on that roller coaster in the meantime!  I know many of you pray for us daily.  I would appreciate it if you would pray specifically now that Bob will be able to stay on hospice.  Also, two of Bob's brothers need your prayers as they are both facing a health crisis of their own.

Thank you, and love to you all,
Betty