Tag Archives: Alzheimer’s wife

Taxes + Alzheimer’s =Anxiety x Ten

Alzheimer's Spouse Issue, Money and Alzheimer's, , , , , , , , ,

tax anxity

 

We were due a nice refund on our tax bill this year, but a few days ago a letter came from the IRS saying they would be “reviewing” our return before any payment would be sent or further action was taken.

I emailed my accountant, “Assume this is routine but thought you should know.” Less than a minute later she emailed me back, “This is not routine, but I’m not saying you have anything to worry about.”

Yikes. I have been through an audit and it was not fun.

The next day I received another letter, with a form to prove Ralph and I are really the ones who filed the return. So now I am trying to convince myself this review is part of the government’s crackdown on fraud returns and that the IRS doesn’t want to send our check to the wrong person.

But of course I am a nervous wreck.

I share this TMI (I know I know; talking about money is a turn off) because I cannot share it with Ralph.

And as I type the words “talking about money” I realize such talk is in fact one of the more intimate aspect of a marriage and that Ralph and I did a lot of such talk, weirdly enough, with gusto. Weirdly because money should have been a sticking point; he came from a working class family always on the brink of financial disaster while I was a pampered daughter of the bourgeoisie. He was a self-proclaimed capitalist, I was a righteous democratic socialist. But although as I’ve written here before, we argued about most things—childrearing, politics, how to spend our free time, where to live, what to eat, making friends, you name it and we argued—we seldom if ever argued over money. Money we discussed rationally.

We were in agreement that Ralph was the one with a talent for earning money, I was the one with patience for nuts and bolts bookkeeping. He went with his gut instinct. I played devil’s advocate. We could while away hours, days, TV seasons, analyzing a financial decision together. Even than nightmare audit was not a cause of tension; we were in it together, like partners in a school science project we discussed endlessly.

But I can’t talk about money issues with Ralph anymore. It’s not that he drives me crazy asking the same questions repeatedly (although he does) or that he might bring up a financial question at an inappropriate time (although the other night our dinner guest blanched when Ralph asked how much we had in the bank in front of her).

It’s that the anxiety of financial decision-making is more than Ralph can or wants to handle. He’s made it clear he doesn’t want to know too much but wants to feel secure. So I give him the basics and repeat them as often as necessary.

But knowing there is a difficult decision to make or a real problem (because I’ve foolishly spilled the beans) spikes his anxiety and the issue gets lodged like a loose widget in his cognitive gears. He can neither grasp it nor let it go.

There’s been no value in putting him through that pain. And selfishly, re-explaining a problem every time he returns to it has usually raised my own anxiety even higher than it is already. So I am keeping this new financial glitch to myself.

If this all sounds dark and self-pitying, there is an UPSIDE of sorts. As I teach myself how to think about money and compartmentalize that thinking, I see more clearly than ever that money, while necessary, is never the end in itself. As Ralph now jokes, as long as he has five bucks in his pocket and me on his arm, he’s happy.

“So, How Is Ralph Doing?”

Caregiver/Spouse Issues, Tracking Changes, , , , , , , , ,

question man2

 

An old friend called to catch up yesterday. We talked for maybe 40 minutes, were nearing the end of the conversation, when she asked, “How is Ralph doing.”

She’d clearly been both hesitant and dying to ask. I had been equally hesitant and dying to answer.

This scenario seems to be repeated in one form or another multiple times a week these days. Everyone who knows, however vaguely, about Ralph’s cognitive problems wants an update but everyone seems slightly uncomfortable asking.

For my part, I am both reticent and overeager to share.

I always find myself answering, “He’s holding steady,” and then launching into all the little negative changes I’ve noticed, interrupting myself to say, “I know this sounds trivial but…”

Because, really, I don’t know how he is.

Ralph is scheduled for his annual testing in two months. As the appointment nears, I find myself thinking about it more and more with both dread and anticipation. (Ralph doesn’t know it is coming up and there is no reason to mention it; either he would quickly forget or the fact of the looming appointment would lodge like a lost jigsaw puzzle piece in his memory, making him anxious on a constant basis.)

Whenever I think that Ralph’s cognitive abilities have slipped, I wonder if I am over-analyzing. This testing will tell me if we are maintaining the status quo. But a sliver of me also wants to hear that my perception of Ralph’s condition worsening is correct.

This is not comfortable to admit. I realize it sounds as if I want Ralph’s diagnosis to be worse than it has been. Maybe part of me does; the Purgatory of our current status quo is certainly preferable to the Hell that may well lie ahead, but the gray haze of impermanence is difficult to sustain emotionally. Sometimes I just want to know the worst and get on with it.

Also I can’t help hoping that once we have definitively crossed the River Styx from MCI to Alzheimer’s, Ralph will be more willing to discuss our situation and plan for the future (ie. leaving the farm) in ways he will not consider now—of course I realize that not only is this wishful thinking but dangerous wishing because what is more likely is that once is denial defense system stops working, a spiral of distress will set in.

So I mostly hope that I am wrong, and that he IS holding steady…that as imperfect as things are, we can continue to muddle along as long as we can. Like any couple in a marriage full of ups and downs.

Has Ralph’s Cognitive Impairment Turned Me Into A Butterfly, Or A Moth?

Caregiver/Spouse Issues, Uncategorized, , , , , , , , ,

 

IMG_0250[Fittingly this moth (or faded butterfly) has fossilized onto our garage wall]

The fishing trip Ralph was scheduled to go on last week didn’t happen. His fishing buddy’s wife got sick and needed him at home. Ralph did not mind AT ALL…”I am dreading it”he kept saying as he usually does before going anywhere… and I was secretly relieved that the four days I had resigned myself to giving up were suddenly restored. I briefly considered not telling anyone, using the found time as a holiday from the world.

But I didn’t.

Instead, I called my vegetable garden partner to do some playing among the squash and corn on Monday.IMG_0298                                                                   I spent all Tuesday morning at a business meeting I’d forgotten to cancel, then called my Tuesday walking buddy. Wednesday I went to my Pilates class and then drove a visiting photographer, sponsored by the ArtRez committee I’m increasingly involved with, into Atlanta to spend the day at the Martin Luther King Center. I made a lunch date on Thursday with a friend I knew needed cheering up. And on Friday I headed back to Atlanta for a meeting of the patient and family advisory committee at Emory’s Brain Center.

Then I picked up my daughter at the airport. She and her husband came to stay at the farm for the weekend and we all attended a wedding together.

In the years before Ralph’s diagnosis, this week would have seemed a whirlwind of social activity.

But as Ralph’s social world contracts, mine seems to expand, as my recent posts attest. This is in many ways a good thing. I love having new friends, love being engaged with the world around me. But I also recognize a certain manic need that I need to face more squarely….

I was the kind of child whose grandmother caught me hiding in the coat closet at family gatherings. As I’ve written here before, I was the introvert, Ralph the extrovert. He loved to go to parties and stay late. I wanted to stay home or leave early.

So why have I turned into this gadabout who joins committees, seeks out new friendships at every turn, commits to projects without thinking?

FEAR is the word that pops into my head.

Our life together, Ralph’s and mine, could so easily become a constant retreat from the world. And to be honest, I feel drawn to drift along on Ralph’s rhythms. To rise late and go to bed early. To spend my day not doing much or talking much.

What I fear is the attraction I feel to downshifting with Ralph.

A lot of dealing with a spouse with cognitive impairment revolves how much to accept, how much to fight and push back. I cannot see into Ralph’s brain or read his thoughts. I understand he is viewing the world differently these days and that his needs have changed. But we don’t really talk about it. I sense he doesn’t want to, and I am not eager to press. All I can do is to [try to] accept who he is at the moment and not make unfair demands.

Because Ralph has a reason, an excuse, to withdraw from more active engagement with the world. (And dementia activists aside, he has made that choice.)

The problem is that sometimes that withdrawal is scarily appealing to me. Is that appeal innate within the mentally and physically lazy woman I’ve always been? Or is it a sign that I am becoming that dreaded condition called “old.” Neither option sounds too good.

I’m not about to cut back on my friends and commitments in order to burrow into a domestic burrow with Ralph. But I am going to work for a little more balance.

Keeping the Stories Alive Part 2: My Infamous Adventures in Recording

daily life with MCI/Alzheimer's, , , , , ,

IMG_ecorder

Many of you will be glad to know I followed your advice and have begun recording Ralph’s stories.

Sort of.

My saga of good intentions gone awry began a few days after my last posting–and the many comments encouraging me to get those stories down–when I brought up to Ralph the possibility of collecting his stories. He was not exactly excited.

“I can’t write it all down.”                                                                                                                                                 “Then we’ll tape them.”

“I don’t like my voice on tape.”                                                                                                                                                      “We can tape and then transcribe onto the computer.”

“I don’t type.”                                                                                                                                                                                     “I’ll do the transcribing.”

“I don’t have any stories worth telling.”                                                                                                                                          “Let’s make a list of ideas.”

“Why are we doing this again.”                                                                                                                                                          “To give as Christmas presents to the kids.”

That last seemed to get to him. So I wrote down a list of ideas and we talked a little about each until his memories of his youth started tiptoeing back.

The plan was that I record Ralph on a digital recorder—the kids would not want cassettes from the apparently obsolete machine I have used for years—and then transfer the stories to flash drives for the kids. My local Apple guy told me to go to Radio Shack for the best choices and assured me that all I needed to do was make sure the digital recorder was “Mac compatible”. That sounded easy.

I bought the recorder that clearly said “Mac compatible” and the guy at Radio Shack spent half an hour teaching me how to use it.

That afternoon, Ralph and I sat on the porch for our first story. The hog killing. He complained he could barely remember, but once he got started, there was no stopping him. One remembered detail sent him toward another. The result was a great story.

Ralph was hooked.

He immediately launched into a second story about his Aunt Della, including generations of family lore.

Then I tried to transfer the stories to my computer and save them. The directions, at least the ones in English, were vague at best. I was able to plug the recorder into the computer and a file would show up, but nothing would save. I am not the world’s greatest techy, but I sensed something was seriously wrong above and beyond my ineptitude.

Although Ralph was raring to go with more stories, I was afraid to continue.

I returned to Radio Shack the next morning. My still helpful clerk Corey couldn’t get the computer to save the recorded file. He suggested I go to the Apple guy. The Apple guy was also willing to help. After much fiddling and frustration, as closing time approached he graciously installed some kind of music program he was semi-confident would take care of things. If not, I was to come back in two days, after his day off, and he’d figure things out.

Guess what still didn’t work.

I went back. Apple guy called Apple. He then apologized. Being “Mac compatible” is evidently not adequate after all. I went back to Radio Shack. Although I had obviously used the recorder, Corey gallantly exchanged it for “MP-3 compatible.” Then he spent another half an hour teaching me how to transfer from recorder to computer.

I came home and told Ralph we’d need to re-record his the stories he’d already told because they were lost.

“Why are we recording these stories again?”                                                                                                                      “Christmas presents.”                                                                                                                                                                    “Oh yeah, that’s right.”

But it was already time for dinner and then bedtime. The next day I was tied up, then yesterday he had his art class. So here we are three days later.

Ralph is ready to start recording. He likes the idea of giving the flash drive presents. “It’s great we’re doing this.”

It will be. The problem is that now I’m not sure I remember how.

Ralph’s Famous Adventure in Hog Killing —or Keeping the Stories Alive Despite Alzheimer’s

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , ,

shutterstock_275552708

I was making dinner the other night when Ralph called me out to the porch where he was having his daily late afternoon cigarette and beer listening to the radio. A story on All Things Considered had piqued a memory from his childhood.

“Have I ever told you about the hog killing?” he asked.

Oh God, not the hog killing story again, I thought as he launched into it. How many times over the years have our kids and I have heard this story–how he was a little kid visiting relatives on a farm with his family one fall during hog killing season, how his easily hysterical mother started shrieking, how the gory killing is mixed into a memory of getting ice cream cones. But it’s a better story in his telling than mine.

“You know you should write that story down,” I told him. “All your stories, actually.”

He nodded. “Yes, I should.”

This conversation is not a new conversation. Every few weeks we agree he has a lot of great stories, and is (or was) a natural storyteller of the Southern charm variety. I suggest he get a notebook and write the stories down. He says, yes, he definitely will do that.

But given Ralph’s inertia fed by his place on the Alzheimer’s spectrum, that’s only going to happen if I make it.

And so far I have been a slacker. I tell him and myself I will get a notebook and set aside time each day for us to work on stories, but then I let the whole idea slip off my radar as quickly as it slips from his. His excuse is cognitive impairment. Mine is laziness at making one more effort. The discipline it will take for me to get him to get the stories down is the same discipline I need—and have so far lacked—to get him to exercise more. His lack of enthusiasm gets me off the hook and feeds my own penchant for lethargy.

But I am making early New Year resolutions. I need to get Ralph walking before he puts on more (not to mention my inches and pounds). More important, I cannot wait until Ralph and I are both inspired to record, whether on audio or in writing, his stories.

Because otherwise the day will come when I ask him to tell me one or he tries to remember, and the story is gone.

Alice Has a Pity Party

Caregiver/Spouse Issues, , , , , , ,

Mad-Hatter-Tea-Party

When friends compliment me for being patient and nurturing toward Ralph I have to laugh. Empathy for others easy, empathy for Ralph not so much.

Especially today. Maybe I can blame the bad cold I’ve come down with, but I feel like griping. I don’t blame you if you don’t feel like sharing my self-pity party, and if that’s the case, you might want to stop reading now.

I just spent the morning re-ordering his meds, which never arrived last week. I ordered refills weeks ago and have assumed they were on the way but when I went to feel his weekly box, I realized they still haven’t come and we are getting dangerously low. Evidently Ralph removed the post office’s post-it note without telling me I needed to pick up a package. The package got returned, we’re down to less than a week of some meds and I was on the phone with the mail order pharmacy working out how to get his meds for half an hour. In the old days, I would have yelled at Ralph for forgetting to tell me because he wasn’t paying attention, but how can I now, knowing it’s not his fault.

Then I re-organized the clothes in Ralph’s closet yet again. One of the more recent hints of slippage has been sartorial. He was never a snazzy dresser, but he was vain about his admittedly good looks. Now whatever is closest at hand is what he puts on. I no longer bother reminding him about the separation between work and dress clothes, but I do try to steer him in the right direction, mostly by having fewer choices visibly available.

Then I dug out a few Natty Lites from my secret hiding place and put them in the fridge for later this afternoon. Ralph more or less accepts this system for limiting his daily alcohol consumption although he’s remarkably able to find my hiding places, his memory and sense of direction still acute where beer and cigarettes are concerned.

This is all so trivial, and I know others’ problems concerning Alzheimer’s, not to mention poverty, hunger, war, are much worse. But I have noticed that managing these silly daily tasks with their subtle reminder of something amiss, something out of balance, sometimes drains more energy and patience  than dealing with Ralph himself. Or that after taking responsibility for the practical details of Ralph’s life, my patience for dealing with the man himself is compromised.

But as I said, I have a cold.

So I’m off to make myself tea and toast and pretend I have someone to take care of me for a little while.tea

Finding the Right Words for Ralph’s Condition

Tracking Changes, , , , ,

I have been struggling with terminology lately after reading essays by people who do not want to be called victims or patients just because they live with dementia.

I totally understand. I hate victim theology.

But I am also uncomfortable when I hear the word hero being batted around. Or survivor. As if the world owes gratitude or praise. Why does dealing with a certain disease or a disability make you heroic? Don’t most people deal with something? And what seems unbearable to one person is no big deal to another because everyone’s pain threshold—physical, emotional, and psychological—differs.

I don’t think of Ralph as a victim and he certainly would never describe himself that way. He would say he’s a guy with a memory problem. Of course, that’s not quite the whole story either, but I respect how he sees himself. So I usually don’t say more unless someone presses or unless Ralph is going to be in a situation that might be awkward; for instance his art class teacher knows why he has difficulty finishing each painting and knows she has to tell him he’s ready to move on to the next or he never would—not a simple memory problem but easy to manage. He loves his class. And the paintings once he’s told they are finished.

And Ralph is frankly no hero and has no desire to be one. He does not want to acknowledge anything in common with others in his condition. He won’t attend a support group for MCI/Early Alzheimer’s. He is not interested in educating the public on the condition or talking about it. He also doesn’t have much interest in fighting the manifestations in himself, in exercising his brain or his body. He is going “gentle into that good night” watching the sunset from his chair on the porch.bird night

Ralph is not a victim, not a patient, not a hero. Not suffering from Alzheimer’s or dementia.

I tried out a new term with him the other morning. I explained (for the umpteenth time because this is one fact he chooses not to remember) that, yes, his brain shows the plaque build up connected with Alzheimer’s, that there is no telling how quickly or slowly the Alzheimer’s will progress but so far his meds are holding his memory function steady. He accepted both the facts and the term I offered.

So from now on if anyone asks, Ralph is on the Alzheimer’s spectrum. Not a perfect description, but it works for us.

Alzheimer’s Cost-to Women-A New Study

Support and Research, , , , ,

I received the following press release from Emory University  this week:

Study finds women bear heavier economic burden for Alzheimer’s care

ATLANTA – An Emory study published today in the journal Women’s Health Issues finds women bear six times the cost of Alzheimer’s disease (AD) care, per capita, that men do. The authors say the greater cost burden is largely due to the informal care women deliver to family members with AD.

Alzheimer’s disease is a progressive brain disorder that slowly destroys memory and thinking skills and is ultimately fatal. It is also one of the most expensive diseases in our country—more costly than heart disease or cancer.

Authors Zhou Yang, PhD, assistant professor in Emory’s Rollins School of Public Health, and Allan Levey, MD, chair of the Department of Neurology and director of the Emory Alzheimer’s Disease Research Center, used a lifetime perspective to calculate AD costs and looked at three factors: the probability of developing the disease, the disease’s duration, and the formal and informal care needed for the AD patient.

“There is strong evidence that women face higher risks of being affected by Alzheimer’s as either patients or informal caregivers,” says Yang. “It is critical to develop public policy interventions aimed at curing or slowing the progress of the disease to benefit the health and economic welfare of women everywhere.”

Yang and Levey used 2000-2010 data from the nationally representative Medicare Current Beneficiary Survey to calculate costs for clinical care paid by Medicare, long-term-care costs paid by Medicaid, out-of-pocket costs for care at home, and the costs of informal, uncompensated costs.

They found women AD patients have 16% higher Medicare costs and 70% higher Medicaid costs than male patients over their lifetime. And the greatest gender difference was in the cost of uncompensated informal care, where a female family member of a male AD patient will bear a burden six times greater than a male family member of a female AD patient.

Yang and Levey initiated the study in coordination with WomenAgainstAlzheimer’s, an advocacy group committed to stopping Alzheimer’s by 2020.

“This is the first study of its kind to document the disparate economic impact of Alzheimer’s on Women as patients and caregivers and the concomitant burden on our public health systems,” said Jill Lesser, President, WomenAgainstAlzheimer’s. “It illustrates the urgent need to reform reimbursement policies for Medicare, Medicaid and long-term care and alleviate the public and private impact of this tragic disease that burdens families for decades.”

I have nothing to add except “Duh?”

No, that’s not fair. I am not surprised that a study proves that women are impacted more often and that their financial costs are heavier. BUT I also sometimes worry that men who care for their wives get short shrift in discussions of Alzheimer’s. And I don’t want to buy into another case of women as victims mentality–mainly because feeling like a victim is less useful than feeling in control.

Beside, in support groups, I am always amazed at the devotion and patience of the men attending. They are less comfortable with the talky format but they are also trying so damn hard and have often given up so much.

So, even though this information rings familiar bells in my brain, there is plenty of pain to go around and alleviate….

“Younger Adults With Alzheimer’s Are Key To Drug Search”–My Greatest Hope and Fear

Support and Research, , , , , , ,

lifestyle dementia technology multitasking

I realize there is much controversy about how money should be spent on Alzheimer’s research—whether more funds should go to a cure or go to prevention. Self-interest has kept me hoping that research finds a way to prevent Ralph from the currently inevitable slide into more serious dementia, yet I also have told myself that preventing Alzheimer’s from affecting masses of others is the more altruistic approach.

Then I read the article,“Younger Adults With Alzheimer’s Are Key To Drug Search,”  . Focusing on a 37-year-old woman diagnosed with Alzheimer’s, it claims that testing for certain Alzheimer’s genes could be a crucial part of the research to prevent Alzheimer’s:

“Until recently, people who inherited this gene had no hope of avoiding dementia and an early death. Now there is a glimmer of hope, thanks to a project called DIAN TU  that is allowing them to take part in a study of experimental Alzheimer’s drugs.

The project also could have a huge payoff for society, says Dr. Randall Bateman, a professor of neurology at Washington University in St. Louis. “It’s highly likely,” he says, that the first drug able to prevent or delay Alzheimer’s will emerge from studies of people genetically destined to get the disease.”

I hope Dr. Bateman is correct. But I can’t help thinking about Alzheimer’s in purely personal terms. And really, the pros and cons of the research were not what came to the forefront as I read the story.

All I could think about were my kids. Basically the Alzheimer’s gene is the monster in the room that has scared me too much to acknowledge out loud.

I doubt I am alone in this avoidance. I’ve noticed that children, most of them already grown, receive only passing mention on many spouse caregiver sites devoted to Alzheimer’s. And the heroic children caring for their parents with Alzheimer’s are so busy writing about their concern for those parents that they never mention fears about their own future.

But the genetic connection of Alzheimer’s within families does exist as this article, and many others make clear [“Alzheimer’s Disease Genetics Fact Sheet for the NIA”,   ”Alzheimer’s genes: Are you at Risk?”,    and a variety of scholarly studies.

The thought that Ralph’s and my kids may be at high risk for developing Alzheimer’s is horrifying.

But the thought of them getting tested horrifies me too. There are all kinds of genetic risks my descendents already face. Cancer, heart disease, and diabetes to name a few. Do they need to be burdened with the certainty, or even the likelihood of Alzheimer’s? I am someone who would rather not know my future (or the future of those I love, especially if that future is going to happen once I’m not around frankly). But my kids are not me. Eventually each will decide what course he or she wants to take.

While I certainly wish Ralph had not developed Alzheimer’s, we are adjusting day by day. In fact, I am fast reaching the point of not quite remembering what life was like before. Alzheimer’s has become central to our life as husband and wife, or as the ever wise Alzheimer’s Wife  recently posted, “part of the bargain.”

The kids didn’t buy into that bargain. But they eventually they may have to own it. It’s not fair, but it’s life.