Memorial Day 2016

We may have more information to share after a doctors appointment tomorrow. 

In the meantime, let me say that this has been a very nice weekend. Son Scott with his wife Helen and son Ender came down from Kirkland.  We spent a few hours with them at Silver Creek Falls Saturday, along with daughter Dianne and her beau Mike (I will call him MM for clarity). We walked the paths around South Falls Lodge  and the observation areas. Then we claimed a picnic table, had some snacks and played bocce ball -- which even Mike was able to do from the wheelchair! Oh, and Ender gave us a private concert with three songs on his violin.

We got to see the Kirkland gang again Sunday.

Monday we had Brooke, Nate, and K for a few hours -- Nate mowed the lawns for us. Then my mom and (most of) her sisters stopped by after their annual visit to the cemetery near us, where several of the Love family are interred.

Hope your weekend was as pleasant. 

Saturday, May 14, 2016

We have been trying to contact individuals with the latest news; I'm so sorry if you read this before we've caught up with you.  Mike's PICC line was removed Friday.

The PICC was not safe to use anymore, and we have started discussing goals of care. The original hope with doing TPN (IV nutrition) was to give Mike's mouth and throat sores rest from irritation, time to heal, and ability to heal (no nutrition means no nutrients to aid healing). Since we haven't had those things occur in a reasonable time, we started discussing if he wanted to continue or if he wanted to focus on comfort and quality instead. For the past year he has said quality of life, and he confirmed it again this past week.

UPDATE: question was asked, "So he's not eating 'real' food and the PICC will not be replaced?"  Answer: "He's 'eating' very little, taking fluids fairly well but only a few soft foods. Today (Sunday noon) he's had an egg, cup of milk, about 12 oz of a mixture banana-milk-ice.cream-protein.powder-breakfast.shake-mix, 1/4 c canned mandarins."

What would he like to do with his remaining time?  Besides family and friends, he said national parks, fishing, and photography. We will be looking at more local, accessible day-trips.  

Maybe dangle a worm from the wheelchair dock at St. Louis ponds (not too far from us). Probably not going to head to the Snake River and Hell's Canyon.

Plenty of state parks, and we have an annual day-use permit.  

We've been very lucky to have lots of friends/family visit just this past week; Benz's, Erickson's, Leighty's, Ringsage, Hayley; and Mike's cousin Greg (and Chris) from the Spokane area. And we got to Skype with son/daughter-in-law/grandson.  We got our own private violin concert from Ender.  (If you know Scott, tease him about the technical difficulties being on his end.)

Please don't worry yourself and others by asking "What's wrong with him and why can't they fix it?"  If you know him well enough, you know he's been in decline for some time, taking multiple hits from Parkinson Disease, arthritis, congestive heart failure, lymphoma. As for me, I'm lovin' this guy who is still "my knight in shining armor," the one I've sailed with so many times, planted gardens with, lived in four homes, RV'd with, had our combined five kids grow in the blink of an eye, over 27 years. He might say he's put up with my hooliganism.  I have no idea what he's talking about.

Our love to you all. Keep thinking happy thoughts.

Tuesday, May 3, 2016: Life's Transitions

This two weeks have been very challenging for Mike.  With all the setbacks he has had the past two months, he is now falling more than once a day. Most of it seems neurological; the muscles are strong enough, so sometimes he is okay, but other times he just crumples when he tries to transfer from the bed to wheelchair (or to the lift chair or to the car).  We have used the hoyer lift eight times.

I talked with daughter Dianne (who, if you didn't know, is the charge nurse at a continuing care community).  She explained some options, and observed she's been concerned about Mike's increasing needs. She and I had an opportunity to talk with Mike later that day. Mike was fairly lucid.  In short, he understands he needs more care than we can give him at home. His main concern is he doesn't want to be 'trapped.' We talked about that, and what it means to him, and covered some other topics. I reassured him I was not 'dumping' him right then and there. 

So we will move forward, timing and location to be determined.  I keep telling myself being a caregiver also means knowing my own limits, and what is best for him.  Yes, I keep thinking it between and through bouts of crying.

Side note: Ben texted Brooke the previous day, said he's worried about me. I didn't know until after our talk with Dianne. On Sunday, Brooke said maybe I should get a maid to come in the mornings for a while. Later, in her own take-charge way, she messaged me "My friend Sabrina is going to come clean at your house this week. Not sure when yet. She's working today but will let me know her schedule later tonight.".  Yes, Sabrina came Monday, and she will be back on Wednesday and Thursday!

Wednesday, April 20, 2016: Mike is home

Friends, I will catch you up, but most importantly, Mike is home.  

I have a thousand things I would like to do outside (okay, maybe just a couple hundred); for now I'm staying inside today until I know he's really settled back in.

Infusion supplies should be delivered soon, and a nurse is coming this afternoon to train me. 

For my daily rant (skip if you dislike the negative): the facility noticed I posted comments on the Internet (Google, one star). Director of nursing and another woman -- forgot who already -- came in yesterday and wanted to address my concerns. They say he was never given Ativan. I stopped short of saying BS; instead I told them two staff, including the nurse practitioner, told me he had received it and they explained why. 

My comment also said it was very noisy.  They acknowledged his room was in a noisy area, but they wanted him right by the nurses station, he is a fall risk and they wanted to keep eyes on him.  I'm not bowled over by their concern. Interesting they monitor internet comments.

Today's positive: He's home.  He's sleeping. It's a beautiful day. 

Friday, April 15, 2016

The new facility has not, unfortunately, been a great move. I was told they would discontinue the Ativan (which caused confusion and hallucinations in the hospital) but someone called the nurse practitioner because Mike was being "agitated," trying to get out of bed, and tugging on his PICC.  She okayed another dose.  This was in addition to getting two doses of hydrocodone, 11pm and 4am.

He was so friggin' out of it when I arrived at 8:30 yesterday.  And a few minutes later the med aide came in to give him another hydrocodone! NO, no, God no.  Thankfully I was able to stop that dose.  As it was, he didn't start coming out of it until after noon.

The nurse practitioner "explained" that most of the patients are post-surgery with knee replacements and such.  The staff just need to be reminded Mike doesn't need constant pain management.

His biggest problem is the Parkinson's, and I've been telling everyone he must have a half dose of his main med in between his full doses.  It's labeled "as needed," but I've had a hard time convincing the great 'someone' to lock it in.  

Today I came in and his nutrition was still running (through a PICC line), but I noticed an error and told the nurse.

He's drinking a lot of fluids, which we want.

We had a 'care conference' today, and Dianne attended to help with our message.  I stated I would like to get him home, maybe Monday, and get him off their hands.  In my heart, I meant 'out of their hands,' of course.  They said it might take to Tuesday or even Wednesday to make all the arrangements for him to get care at home.  Fine.

Please don't think I'm a witch.  I love this guy, and I have to advocate for him.  My professional nursing credentials?  None.

Oh, but let's end with something funny.  Mike.  During the care conference he was mostly out-of-it.  But at one point, "I have a question," as he looked at the nearest employee, "What gives you the authority to hold me here?"

Bwa-ha-ha

April 13, 2016: To "The Pearl"

First: happy birthday to my "littlest" brother, Michael!

Now, to my Mister: he moved from the hospital today to a skilled nursing facility.  Hopefully he can now rehab quickly and get home.  His blood pressure has been dropping when he tries to stand, so we need to be sure he will be stable enough when just one person is helping him.

Also, found out after the transfer that somebody at the hospital had put him on Ativan (lorazepam). Not good. Very bad with Parkinson's, can cause confusion and hallucinations, which have been happening the last four days.  Julie is pissed, but the current facility has discontinued it.  I will DEAL WITH IT later.  (hah, anybody have any doubts?)

Saturday, April 9, 2016: Mike, Mystery Man

Diagnosis: we don't know.  We know a bunch of things the mouth and throat sores are NOT.  Not an infection. Not cancer. Not a virus.  One doctor seems set that the food pipe ulcers must have come from a pill getting stuck sideways for a while.  But that wouldn't explain the mouth ulcers.  They have taken him off the antibiotics and antiviral.

Discharge: there have been three plans so far!  So I won't even mention the latest possibility until, perhaps, we're walking/rolling out the door.  But he could discharge Monday.

He is getting nutrition through a PICC (central line) to give his mouth and throat a rest, but he can have "full diet" if he's up to it.