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!