Pamelia Lake hike (8/13/2016)

Dianne Ramsby (Mike's daughter) said it best, so in her words:

"Yesterday [Saturday, August 13] we went on a hike to Pamelia Lake to honor Dad. It was a goal of his to hike there again 6 months ago after he was trying to get stronger and recover from his latest hospitalization. We went there as kids, and it's been a happy memory for all of us. It was a beautiful day, great company, and made me feel closer to him and his love for the outdoors."

We took part of Mike's ashes with us -- yes, he finally went on the hike again!

Obituary and Celebration of Life

Mike's obituary can be viewed at Cornwell Chapel's site.

Celebration of Life will be held Sunday, September 11, 11:00, at Wooden Shoe Farms. Mike would want this to be a festive occasion, so please wear color, Hawaiian shirt, tie-dye, or the like.

33814 S Meridian Rd
Woodburn OR  97071

Mike passed away August 1, 2016

[repeated from Facebook post]

Michael Ramsby passed away Monday, August 1. We had so much support these last months, thank you all. Every couple of days we had a phone call, or a visit, or a text, or an email, or a note in the mail.  We are putting together plans for a celebration of life to be in another month. (Plan to wear color, Hawaiian, tie-dye, etc.!)

Weds, July 20, 2016: Funnies?

Mike is doing about the same.  Pain is under control.  Lots of sleep, lots of hallucinations, no deep conversations.

Some people are finding comfort in stories of his drug-induced silliness.  I will share some of those stories, but if you see them as cruel or demeaning, please know it's not my intent to make fun of my husband. The girls (Dianne and Brooke) and I find it much easier than the 'Kleenex-alert" moments.

1.  Mike has put me 'under arrest' several times, and a caregiver at least once.  One example:  He wanted me to use the flashlight I had earlier (no such thing), and was upset when I just got the nearest flashlight.  Wanted me to check under the dresser because a person was there.  No, there wasn't, I checked.  Then I looked at me sternly, "Julie Jackson, you are in serious trouble.  Where's that flashlight?  I'm the Sheriff and you have to answer to me."  I laughed.  Outright laughed in his face, "No, you're not a Sheriff and you never have been.  I'm going to get your meds." He was trying to be very authoritative, "You stand right over here..."  

2. My more recent 'arrest:'  I was under arrest for refusing to provide my resident address.   Then it was for driving under the influence.  Then I was not under arrest, but under request to assist the county sheriff's office.  Then I said, "You know that's not true, right?  The county sheriff has not requested my assistance?"  He answered, "You're lying.  You know I have."  "Mike, you're not the sheriff."  He was not happy, "No?  Then tell me his name, right now."  I looked it up, Craig Roberts, with picture.

3. Mike asked the caregiver to scramble two eggs.  She asked if he was going to eat them, because otherwise it's a waste.  He said it's an exercise.  And four scrambled eggs are worth two in the field (?).  "It's an exercise."  The same day he said we needed to practice putting on the firefighter outfits to be ready for the wildfires.

4. He said I wasn't cooperating; I didn't want to participate in his practice to extract somebody from a hole. (Holey-moley)  Yeah.  I was trying really, really hard not to laugh at him because it was so ridiculous.  (By the way, he canceled the exercise!)

5.  My mom and Aunt Susan seemed to think this was extremely funny -- I sure didn't at the time.  Mike was upset I had taken time to mow the field, "You need to stay right here for me now."  I got up with my mug and asked if it was okay to get more water.  He didn't answer, so I asked again.  Still no answer.  I got the water, sat back down, and he announced I was being an asshole.  

6. Yesterday he wanted to rearrange his end table and little wine cabinet into a sergeant's desk.  I reminded him he's retired, and he can relax.

Many of my texts to the girls these days start with: *sigh*

Thursday, July 7, 2016

Time to make a new post because I can't sleep anyway. 

I can now tell you about an option Mike wanted, started to put into motion, and then became not eligible to use.  If he had remained eligible, and chosen to use the option, I would never have included it in a post.  Only the closest family members would have known.

Death with Dignity.  Mike wanted some control for the end.  He has slowly and agonizingly lost control of his own body over the years.  This hasn't been just normal aging. Parkinson's, diagnosed at age 51. Severe arthritis (knees, replaced; shoulders; ankles, braces). Non-healing wounds (twice, half-year process each time). Congestive heart failure. Kidney disease - surprisingly reversed with chemo for lymphoma.

One afternoon in May he was in uncontrollable pain.  I called the doctor's office for the next step up in control, but we wouldn't be able to get the med until the next day.  As his pain continued into the evening, he wanted to call the kids because he was sure he was going to die that evening.  I told him I was so sorry for his pain, but he would have help the next day, and there was no reason he was going to die that night, or if it would be in a month or two.

Mike said, "I don't want to be here in a month or two."  Wrenched my heart.  He started receiving the new med the next morning, but he also had me make the calls and get a referral and appointment for the "first request" with a doctor.

(Under Oregon Law, a patient has to make a request to a doctor, and a second request at least two weeks later. The doctor and a second doctor have to agree that he is terminal with less than six months to live.)

Mike saw a doctor who receives a request, or more, every week.  Very nonjudgmental. So he made the referral for the second doctor review, and an appointment was made for more than two weeks later. And I called our primary care to say we were ready to be admitted to hospice care.

But.  Over the next two weeks, Mike rapidly lost cognition. He was doing what I call all-day sundowning. At one point, I texted our daughters, "*sigh* sundowning, he says I'm not cooperating. Cuz I don't want to participate in his practice to extract somebody from a hole. (Holey-moley)."  He announced the exercise was canceled.  There were similar examples several times a day.

The form Mike would need to bring to the second doctor, to formally request meds is called, "Request for medication to end my life in a humane and dignified manner."  It has to have two witnesses.  If I were to be a witness, one of the things I would be asserting: he is of sound mind. Nope. Nada. Nyet. So second appointment, and the whole thing, scrubbed.

Meanwhile, hospice has worked on pain control, but it's not a quick calculus solution. He could take his newest pain med more often (every 2 hours if needed, instead of 6 hours). They aimed to put him on a longer lasting drug, but he had to be off one of his Parkinson's meds for two weeks before starting! And then it took about a week to build up in his system. He still has break-through pain about once a day, different times, and I have to throw everything (multiple meds) at him, and wait up to an hour to see him relax.

Let's add to the mix. In the last week, he's had more episodes of being highly agitated, so we throw an anti-psychotic at him.  Crushed, mixed with water, and dosed into his mouth with a syringe. And wait 30-60 minutes. 

That's the emotional roller coaster. The journey will eventually end, giving him comfort and peace.

Tuesday, June 21, 2016: Sharing kid memories

Father's Day weekend: Scott, Helen, and Ender traveled from Kirkland.  We got to see them Saturday and Sunday; Dianne and 'her man' Mike also came Sunday.

Scott sat with his Dad and related some of the adventures and vacations they had in Scott's youth.  Camping trips, some with the Scout troop.  One in the snow, and snowshoeing. Family camping at Blue Lake.  River trips, with white water rafts, kayaks, or jet boats. The hard work of a snow ski lesson at Mount Bachelor, without a tow rope, and having to walk up the hill for just a short slide down. Bicycling while camping at Silver Creek Falls (and not remembering he stopped his father's heart when he sped right across the highway without so much as a glance for any traffic). Horses at Sunriver and at Kahneetah. A week in Washington DC.  College campus tours in California. 

Dianne remembered Pamela Lake, which brought up the question, where is that?  Google Maps revealed it as Santiam Pass, between Detroit and Marion Forks, the southwest foot of Mount Jefferson.  Easy walk for them as kids. Something about a big log in the water - I think they all climbed up and it spun them into the water.

Memories.

Thursday, June 9, 2016

In April, our doctor told us she would write the order for hospice any time we were ready.  Today I made the call.  Hospice care will be through Willamette Valley Hospice, with Mike staying at home.   We are hopeful for good pain management.  Mike is currently using a lot of Lidocaine for the mouth and throat pain. Surely there are other options.

He's lost about 25 pounds in the last three months.  Or, really, the loss was in two of the last three months, given he had a month of nutrition-by-tube.

He is still enjoying the visits and phone calls from family and friends. Lots of naps.  And some 'sundowning,' which can be quite interesting.  

Friday, June 3, 2016: No appointment

Sorry, there was no appointment with the doctor on Tuesday.  Well, he had an appointment scheduled but it got canceled.  Primary care is referring Mike back to oncology for the discussion Mike wants to have - and get some prognosis on the timeframe, if the doctor can make one.

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.

April 4, 2016: At the hospital

Mike has been dealing with mouth sores for one month now. They are extremely painful, to the point that has not eaten any solids, very little intake of softs/liquids, and very little water.  He started getting IV fluids every other day over the last two weeks.  

Yesterday he was doing so poorly I took him to the ER for fluids again (being Sunday, and no clinics open).  He was running a temperature (101) for this first time during all this.  They started fluids, which seemed to take forever before it started.  They also drew blood, took chest X-ray (no problems) and ordered other tests.  The doctor really didn't like how bad Mike looked, so they seem determined to get to the bottom of "it," and admitted him to the hospital (Meridian Park, in Tualatin). 

Mike has started having pain with swallowing, so the plan is to do a scope tomorrow - hopefully getting a definite diagnosis of what's going on and how to treat. 

Hello to whoever might be out there.  I know it's been a very long time since I've posted.  Thank you for your kind thoughts.