December 8, 2017. We didn’t know changing Pam’s address with the Social Security Administration (SSA) was going end up being an Alzheimer’s anecdote until the deed was done. For that matter, I didn’t realize it had been that long since I’d written one of these posts, either. Publication date of the last one shows April 11, 2016.
At that time, 20 months ago, both my wife and I felt she didn’t have long to live. We were almost right.
In late October of 2016, she entered the hospital in Sierra Vista with an extreme psychotic break. Colors were assaulting her senses and she could see bright reds and whites that were invisible to we mere mundane mortals. Worse, she’d become obsessed with using tiny, torn bits of tissue paper to place one color over the other, producing a third color and somehow magically preventing the evil Dark Side forces from taking over. In her broken mind, I had become her personal Public Enemy Number One, every car out there belonged to law enforcement (even the invisible cars fit this category) and every one of those official vehicles had their light bars running, coming to get her.
She only walked into the hospital to seek treatment after I decided she shouldn’t. If I said it was bad, it was good.
Seventeen days, two hospitals, and one Life Flight later, she was ready to be transferred to a charity hospice room. (We had no insurance at that time, which automatically qualified her for consideration.) In St. Joe’s hospital in Tucson, a few hours before heading to the hospice, she asked me–via lip reading, as she’d been intubated and could make no sound–“Why am I here?”
“Because you’re dying,” I replied. And she was. Hospital staff had informed me that the feeding tube through her nose had to come out and the next step was a PEG tube, the kind they punch in through a hole in your gut. Her mind was clearer that day than it had been for a long while, so I informed her of that. She has a fair bit of medical knowledge; she knew exactly what a PEG tube was and how it was inserted. Her answer? Not only no, but “Hell, no!” Which meant she would “go tubeless,” go to hospice, and die of thirst and/or starvation. The repeated intubations had damaged her throat; she could not swallow food or even the trickle of water from an ice chip held in her mouth.
Knowing we’d given up on her made her mad. Not insane, which she’d most certainly been for some time. It was a rational kind of mad. In hospice that very night, she began drinking water and eating pudding by midnight. Four and one half days later, she was out of there, shaky and with one lung not working so well yet, but on her own two feet.
Never underestimate a redhead.
Fast forward to May, 2017. We closed up the Border Fort, put it up for sale (which it still is, listed by Jackie Collins of Hereford Realty in Hereford, Arizona), and moved to Montana. How the decision to move came about is a bit complicated, too much so for this post. Suffice it to say that she was ready to leave Arizona and I needed to get back to my home stomping grounds, having grown up a Montana rancher’s son and rodeo contestant among other things.
The move was enormously complex, involving a 40 cubic yard roll off dumpster going to the landfill with stuff we did not need, juggling finances with a finesse worthy of a circus act, entirely remodeling Pam’s “new” bedroom in Deer Lodge before loading the U-Haul, and her son, Zach, making the stress for both of us manageable by helping me load the big stuff and then driving one of our vehicles to Montana with his Mom and one of the cats in it.
It wasn’t long after we got more or less settled in that I managed to get my address updated with SSA. However, the process had involved a couple of steps:
1. Trying to set up a “My SSA Account” online did not work. For extreme identification, I had to try answering a bunch of questions lifted from data shown on my credit reports, among other sources. Unfortunately, either Equifax or Experian (not Transunion) has some of somebody else’s loans and contact data showing as mine…and since I couldn’t answer the questions about those people and/or contracts, I couldn’t go any farther with SSA. I later discovered that trying to contact the credit agencies online is no easier; they blocked me in the same way.
Not that I care about correcting them. Transunion’s record is 100% clean and accurate and I’ve had zero problems getting loans when I needed them. For me, correcting Equifax’s and/or Experian’s records is not worth the bother. But it did mean I’d need to come at the address change from another angle.
2. Knowing it could be a long wait, I picked a time when that was possible and settled in, on hold with the SSA for something like an hour or so. When an SSA employee did come on the line, our conversation was courteous, to the point, and pretty soon the deed was done. Sure, I’d needed to know my phone number, Social Security number, old and new addresses, mother’s maiden name, where I was born and where she was born, but other than that, nothing to it.
For me, that is. For Pam, the cards were stacked differently. She was in no shape to tackle the change of address just yet. We were then in the process of finding out the hard way that western Montana physicians were not going to be any help at all. Despite the fact that she’d doctored locally (in Anaconda, 25 miles down the road from Deer Lodge) until I had to leave the state to find work in 2006, none of them would touch her case. Pain management was a sticking point but far from the only one. In the end, we concluded that Montana doctors were a bunch of arrogant, cowardly, lazy wimps (I’m using polite language here) and we had no choice but to drive her back to see her practitioner in Arizona every other month.
Yep. Come sun, rain, snow, or subzero temperatures with black ice, we’d have to keep on trucking. Pam hadn’t even recovered from the move north when we had to make our first summer run south and back. She did get to visit with her son, her doctor in Sierra Vista is absolutely wonderful, and she bonded with the staff at the hotel where we stayed–but driving back in the 2006 Subaru Outback we’d acquired almost killed her all over again. In a small truck stop 29 miles north of Sierra Vista, she lost me. Couldn’t find me for something like 20 minutes. Panicked. Was crying in terror when we finally spotted each other. Plus, the bed we’d rigged in the back of the Subaru was not enough.
“I can’t make another of those runs like that,” she said, and I agreed wholeheartedly. I’d already begun planning how to make the bimonthly runs more survivable for her. Mere days after our return to Deer Lodge, I’d purchased a used 1998 Class B Pleasure Way motorhome. When I wasn’t working on the 1972 mobile home we’d purchased, or the enclosed back porch that needed some serious TLC, I was focusing on getting the van ready to for long distance commutes. (The van is now named Harrison Ford because it’s a Ford Econoline chassis and the main shopping drag in nearby Butte, Montana, is Harrison Avenue,)
With all that (and more) going on, it’s no wonder Pam’s change of address with the SSA sort of drifted to the back burner. Basically, we forgot about it.
That is, we forgot about it until SSA sent Pam a letter telling her what her Social Security check would look like in 2018. It was good news, in large part because the amount deducted from her benefit to pay for Medicare Part B insurance will be reduced compared to 2017. Nice surprise even though the reason for the lowered premium is our lower income in 2016 compared to 2015.
But the letter had been sent to our old address in Arizona, then duly forwarded by the good people at the Hereford Post Office.
“Whoa,” I told her. “We need to get this done.”
Which proved out to be a bit of an adventure, to wit:
1. The funky credit report questions blocked us from initiating the change of address online, just as it had done with me.
2. We called SSA . I volunteered to wait on hold until an SSA human came on the line. After about an hour and a quarter of waiting, give or take, a woman did speak to us.
If you could call it that. Pam happened to be holding the phone when Selma (Pam thinks, though she can’t be sure that was the name and the woman would not repeat it.) came on the line. The call went south right from the start. The SSA employee was mean, nasty, rude, and crude with attitude–and those were her good qualities. This was not expected; until that moment, we’d received nothing but courteous, professional treatment from SSA folks. But Selma quickly confused Pam with her abrupt, terse, dismissive questions and demands. When Pam handed me the phone so I could act as her interpreter, the chat went something like this.
Me: “We need to get Pam’s address changed.”
Selma: (In a nasty tone.) “You can’t do that! Only she can do that!”
Me: (Snapping, because I don’t take this from anybody.) “I understand that, and I will hand the phone back to Pam. You just need to listen to me. She has dementia and you have confused her.”
Selma: “(Gibberish to my ear.)”
Me: “If you will slow down a little, I will hear you better.”
Pretty soon, the phone went back to Pam. Selma whipped off a bunch of ID questions, all of which Pam answered promptly and correctly. Then she asked Pam for her old address. Pam couldn’t remember that precisely, so I held up the SSA letter (which had the address on it) and read the address to her to relay to Selma, bit by bit. Before we’d reached the end, Selma snarled in Pam’s ear, “Tell him to STOP reading the address!”
Pam duly relayed the message. I stopped. Pam attempted to finish up with that so she could get to the new address part. Suddenly she put the phone away from her ear and looked at me with disbelief. “She just sent me to the survey!” Which is where you go after any SSA call is finished.
The witch had hung up on my disabled wife.
Pam, being a natural redhead and angry at Selma telling Pam’s husband to STOP, wanted to track her down and kick her butt. I was merely disgusted.
So much for Step 2 in the process. Now what?
Well, we had one more option: Visit the Butte SSA office in person. It would mean extra unnecessary stress for my baby, who struggles to pack a suitcase given a month to do it and is 98% housebound these days. Not a good thing. Maybe, as our friend Manny suggested, Pam could sign a Letter of Authorization, notarized, for me to take over to Butte as her agent, along with the Medical Power of Attorney we do have on file. Local Montana folks were likely to be a lot more accommodating than Ms. Selma by default if nothing else.
But that would mean Pam would still have to dress up enough to leave the house, go out into the cold, head downtown with me, and sign in front of our favorite notary. Less stress, but still stress.
That looked like it would be Step 3.
Until this morning. Pam got up around 3:00 a.m. and I went to bed at 4:00 a.m., so we had an hour or so to chat together. “I may call SSA in the morning, she said.” So I left out the SSA letter for her, having added our phone numbers in large print because she can never remember the “new” Montana numbers.
I got up again at 7:30 a.m. or so, working in a trip to the bathroom, the logging of a dream state experience, and another brief chat with Pam before returning to bed. (Eight hours of straight sleep is unheard of in this house.) Pam had an update.
“I called SSA. They (meaning the computer) said they’d call me back. I’m 55th in line.”
“Exscellent,” I said, and went back to bed.
It was nearly noon before I rolled out for the “day” (my “day” including most of the night, usually). There were things to do, smoothies to make, rice and burger and peas to eat. All in all, it was around 3:00 p.m. when Pam decided she had to crash for a while and headed for her bedroom. Only then did I seriously sink into my office chair…and notice the orange “SSA-PAM” folder sitting atop the lid of the trash can next to my desk. I’d just popped back to her bedroom doorway and called out, “Guess SSA never called you back, eh?” She hadn’t answered, being already deeply asleep, and that was a good thing.
She’d added a note to the SSA letter:
“SSI Called back
At about 81:0 am / Eric
VeRy Polite < P: DoNe"
Moral of the story? Alzheimer’s or no Alzheimer’s, never underestimate a redhead. Especially Pam.
Pammie got back up (briefly) around 5:30 p.m. I mentioned the note, told her how extremely proud of her I was for such an accomplishment, and asked her about the phone call with Eric at SSA.
“He was really nice. Very polite.”
“Did you tell him about the conversation with Selma? What did he say to that?”
“He said he was really sorry that had happened to me and that he could never imagine doing that to anybody. He asked me if I needed to get you to help me and I told him no, I’m on my game this morning and Fred’s in bed. When we were done, he said, you don’t have dementia!”
My redhead does have dementia, of course, but she can still sometimes fake it really well on a good day. Typical of Alzheimer’s sufferers, she can pull out long held memories without any effort at all, so spitting back proper responses to Eric’s queries regarding mother’s maiden name, place of birth, etc., do not present a problem. Plus, she knows how to cheat. She had the old address right there in front of her, along with our current phone numbers.
One of her greatest super powers is the knowledge of when she’s having a good day and when she’s not. This one was planned to a tee, she knew she was functional and she got it done.