Last summer, I made a trip to scatter my uncle’s ashes in the headwaters of the Colorado River. He was a lifelong trout bum, and I was fulfilling his wishes. He told me he wanted them at Pumphouse, just below Gore Canyon, not far from Kremmling.
Months later, I asked him about it to confirm. And he said, What do I care? I’ll be dead.
It was easy to ask him questions repeatedly. He had Alzheimer’s, and so would not remember. In fact, I learned that it’s best to repeat anything you know that "works" in dealing with Alzheimer's. Frequently. The repetition can drive the caregiver nuts, but when you find the right things to say, it can give the afflicted patient a lot of comfort. You can tell the same joke a hundred times, and get a laugh every time. Every. Last. Time.
A special welcome to anyone who is new to The Grieving Room (earlier entries here.) We meet Monday evenings. Whether your loss is recent or many years ago, whether you have lost a person or a pet, or even if the person you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time) you can come to this diary and process your grieving in whatever way works for you. Share whatever you need to share. We can't solve each other's problems, but we can be a sounding board and a place of connection.
I kept the ashes around the house for the better part of a year. I wouldn’t have taken that pilgrimage up into the Rockies without his instructions, a gift I am grateful for. A gift it's worth considering in writing one's own will. We ended up going to a different place, upstream, where the Colorado River is just another mountain stream. Countless similar tributaries join together to create the mighty force that carved the Grand Canyon over millions of years. No matter how big a river gets, they all start small:
I hadn’t quite realized that cremated human remains aren’t like the stuff I clean out of the woodstove. They’re very dense, being comprised mostly of bone chips, and sank like a stone. (In the picture below, the little white smudge of the ashes is nearly a third of the way up, centered L to R.)
I hadn’t been up that way in several years, not since before the Alzheimer's diagnosis, in fact. I was shocked by what major infestations of insects had wrought on the forests of the Western Slope. It kinda bothered me to be leaving Uncle's ashes in a blighted landscape. But this is eternity we’re talking about. The landscape will change and evolve over the centuries, the ages, no matter what. That's the way of the world.
ALZHEIMER'S
Summer of 2001, some of his friends in Denver contacted me that Uncle was having trouble. They’d gotten him to the doctor for a variety of tests, and I was summoned for a doctor's appointment to review all the test results. Bad luck - it was scheduled for my birthday - and I spent it getting his Alzheimer’s diagnosis. The Alzheimer's diagnosis comes as a fallback when everything else has been ruled out.
Uncle was widowed and childless. He was still living on his own, in a little condo apartment after having sold his house. But he wasn’t doing a very good job of taking care of himself any more. He had that early Alzheimer’s trait of constantly asking what day it was, what time it was. I tracked down a fishing buddy, an attorney with an estate planning and probate practice. That was a stroke of luck. We were able to get Powers of Attorney and Living Will in place. It might have been hard to do if a long-time trusted friend weren’t the one doing it. In the years since then, the Terry Schiavo case taught us how important having those documents in place is.
Uncle was cantankerous and independent. There was no stopping him from driving, which he should ought not to have done any more. It's a miracle he didn't hurt anyone. Friends reported he was sometimes very late to engagements. He did forget where he was going sometimes, and probably got flat-out lost, too. More seriously, he had a tooth requiring work, but he couldn't remember to go to the dentist. It abcessed, and a friend took him to the emergency room on a September weekend. But his memory was too far gone to remember to take the prescribed antibiotics.
SEPTEMBER 11
And so, on the morning of September 11, 2001, I got a phone call that he had been admitted to the hospital. The untreated abcess had complicated to meningitis, and he was gravely ill. All flights were grounded, and I was the only relative close enough to drive. And so, while the rest of the nation was in a stunned state of shock over the World Trade Center coming down, I was packing my bags and heading the 300 miles north to Denver. And I used to work at the WTC, so it was an especially crazy day.
View from the 96th floor, south tower
Uncle never returned home. I spent much of the fall in Denver. First, I had to get all the proper authorizations to get the financial Power of Attorney kicked in, so I could sign his checks and the bills could be paid. I had to deal with his "stuff", almost the same as if he had died. Sell the condo, sell the car, sell the boat. And who knew what to ask for real estate at that highly uncertain time? There were annuities I had to get a handle on, a safe deposit box, and so on. Certified copies of the various documents had to be provided to the bank, the realtor, the DMV to sell the car, the utilities (to shut them off), and so on. Lotta work, but it would have been much, much harder without the legal documents in place.
There was a kaleidoscopic array of hospital emergency admits, nursing homes sojourns and assisted living facilities. Uncle saw no reason he should be locked up, and busted out of one after another. They'd declare him dangerous, and evict him. There were lots of billing disputes over all this. It was a wild time. An exhausting time.
I decided I'd have to bring him home to stay with me. I didn't like the idea, because he didn't know anybody here but me. But nothing else was working. I was exhausted from all the drama, and the many trips to Denver.
Some friends - another fishing buddy who had set up Uncle's annuities - asked me to bring him over for a visit. And they offered to take him in as a boarder. It was a bit of a challenge, because they're full bore wingnuts. But it worked out for a year. The best that year could possibly have been. They took him on his last camping trip, fly fishing down around Durango. I still get the occasional letter, asking for support for playing in a golf tournament to raise money for Watergate Chuck Colson's Prison Ministries, a dominionist charity. I suppose there's some value in knowing these kind of people up close. Opposition research of a sort, but it was a real challenge. And I had to be polite.
I guess I forgot to mention that Uncle had cancer, too. Prostate cancer. He'd had surgery a few years earlier, but opted out of other treatment. Probably the hardest part of the whole process was making cancer treatment decisions. I'm so grateful he'd made his wishes clear ahead of time, and there were legal documents with instructions. It worked out OK in the end, as he died while he could still recognize people. But I'm getting ahead of myself on that.
ROAD TRIP
When it comes to end of life care for an Alzheimer's patient, it's like an arranged marriage. You negotiate a dowry, and it's a "Till death do us part" deal. He eventually went over to Medicare Title I-forget-the-number, which required accounting for all financial transactions for three years. If you find yourself with this kind of responsibility, make sure to keep receipts and records. It helps the paperwork move through the system much more quickly than if it's missing.
The wingnuts were neither willing nor able to provide care after a year. And so, in December 2002, I drove uncle and his dog across country, ostensibly to visit my brother in New England for Christmas. Alzheimer's patients, with their diminishing cognitive ability, are generally distressed by change, so we didn't tell him that he wasn't coming back.
A friend with a whitewater rafting company loaned me some of those waterproof duffel bags. I built a rack on the car, and loaded it up. It was all done with subterfuge, to avoid getting Uncle agitated. The last bits were loaded up as he went ahead with some friends/co-conspirators for lunch at a restaurant.
That road trip! I've driven across the country more times than I can recall. This trip was one of the most difficult of them all. I learned to use the car's child locks after he opened the door on the Interstate in western Nebraska - at 80 mph!
We were delayed by an ice storm, he screamed and swore at me in a roadside rest area, I had to recruit a stranger to fetch him from a men's room in Sandusky after he'd been in there for an hour. And he wanted to drive. Lord, but he wanted to drive. He'd bring it up, and I'd put it to rest. But twenty minutes later, he'd start in on it again. I know he couldn't help it, but it drove me nearly mad. There were more little challenges and misadventures along the way than you could shake a stick at. I yelled at him a few times out of frustration, and crumbled into tears once or twice, too.
That ice storm came on the last day. We made it to a friend's place for the night, a few hours short of the final destination, my brother's house. We finished that last leg in time for lunch the next day. They offered to help me unload, but I said, "Just keep him busy. Don't let him see what I'm doing." I had to unpack all those ice-encrusted dry bags, which I had to return when I got home. There was no hope to untie the icicle-laden ropes that held them on the rack, so I cut them with a saw.
Once I finished, I came inside for lunch, too, and said to Uncle. "Well we made it! Now that we're here, how was the trip?" He smiled peacefully and said, "It was lovely. Thank you very much." Wow! He didn't remember a thing, and was simply winging it. Making an appropriate polite comment because he learned good manners as a boy. What can you do but laugh at that point?
He was back to his hometown, where there were a few friends and relations still around to visit him and talk about times long ago, which he could still remember. Here he is as a boy - the one in the middle. He was born in 1922. Looks like Norman Rockwell, or the Little Rascals on the 4th of July. It wasn't a bad time to be a kid, just before the stock market crash and the Great Depression.
UNCLE
I haven't said much about who Uncle was to me. And this diary's already overlong, so I'll keep it short. He was the family black sheep, and my rebellious nature loved him for it. My mom never much liked him, her husband's brother. Complained that he was "irresponsible". She thought he was a bad influence on us kids.
Uncle was an outdoorsman, an old-style Teddy Roosevelt, Trout Unlimited kinda Republican. He knew rivers as well as anyone and was an ardent conservationist. He worked summers as a back-country wilderness fly fishing guide at Yellowstone. Pretty much every fly fishing author, over the span of a few decades, mentioned him somewhere in their work. He had a wonderful way with the language himself, but only employed those talents to write exquisitely delightful letters. It was sad to watch him lose that as the Alzheimer's progressed. He introduced me to Aldo Leopold, one of the great writers of the 20th century IMHO. He gave me a head start on understanding large-scale environmental issues like watersheds. He hated dams. Hated 'em with a passion.
By the time he died, his time had come. He hadn't been fishing in years, or barely even outside. He was in an excellent facility, five minutes from my brother's house. He was content there. As the cancer advanced, he had surgery, but just for palliative care. He knew my voice on the phone right till the end, and recognized my brother, who was with him when he died.
When I left his ashes and walked away, I wept. But they were peaceful tears, if that makes any sense. He was where he belonged, in a trout stream with no upstream impoundments. And he had lived his whole life, finished all he needed to do. I ran into an old co-worker from Taos Pueblo on their feast day last September. (I was there registering voters.) He asked after Uncle. When I told him about the trip to the Colorado Rockies, he smiled and said "That was the right thing. He left in a good way." The simple truth.
I rinsed out the plastic container provided by the crematorium and its inner plastic bag a few times in the river. But then what to do with them? After all the sentiment in leaving the ashes behind, the deep spirituality of the headwaters, I tossed the plastic in a roadside bear-proof trash can.
ALZHEIMER'S (again)
In addition to managing all the business in Denver, I had Uncle in my own care some of the time, too. It's a strange thing, looking after an Alzheimer's patient. They don't remember anything half an hour after it happens, so even though you're with someone, you're still very much alone. And it reminds me of the movie Groundhog Day. If they have something on their mind (like Uncle wanting to drive on that December road trip), they'll bring it up again and again. Eventually, you find an answer which satisfies them, which doesn't upset them.
Occasionally, I'll get angry enough that I feel like I have some kind of a hangover the next day. It's my intuition that these are the biochemical aftermath of emotions, as surely as the fight-or-flight adrenalin rush which leaves you drained later. It seemed that if uncle got agitated, it lasted much longer than he could remember the triggering incident. Biochemistry. Neurotransmitters. Cell signals. Sometimes it was fascinating, the insights about non-verbal processes. I learned to go with Uncle's flow, how to keep him calm. My brother had a harder time of it, worrying about "lying."
Example: While Uncle stayed with my brother, he'd get all fixated on getting a driver's license. Brother would try and explain why he couldn't drive anymore, and an angry argument would ensue. Because brother thought it was wrong to lie. The SIL and I both agreed that the right answer was "Let's go down to Motor Vehicles tomorrow morning." Uncle was happy with that answer, and would have forgotten it all, entirely, by morning.
I'd be particularly interested if others who have cared for someone with Alzheimer's would chime in on the comments.