Moving “With” Ralph

 

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I meant to write about our last Christmas on the farm, about Ralph and his oldest son taking out guitars and playing together as everyone sang along on Christmas eve, Ralph thoroughly engaged for those few hours, how family and friends who’ve celebrated with us every year for decades and decades gave speeches at dinner that moved others to tears, how difficult I found it (still find it) to grasp the import because my bittersweet emotions were tinged with relief.

I meant to write but really once the 26th came, I was too embroiled in the present and future to worry about the past, event the immediate past.

It is the second of February and our movers are coming on the fifth of March. All my books are packed (minus the hundreds I donated to the library). So are most of my pictures, handmade glass and most of my kitchen. Next weekend I am driving to Nola with our bed and however much I can squeeze in a u-haul. I want the bed ready for Ralph when we arrive on the fifth to beat the movers who will show up the next morning.

The fact is that the practical issues are all falling into place.  There are no serious glitches. The farm is under contract to my next-door neighbor who plans to put it into the rural preservation program. The movers are hired. The renovation is only a few weeks behind schedule and not too over budget so far. I have been able to get things done and keep up with my other work and with my social life. My days are full, but not overwhelming. In fact last weekend a friend and I organized our mutual birthday trip that will take place in May (with my son coming to stay with Ralph while I’m gone—a lot easier asking him to come to Nola than to the isolated farm).

I meant to write an update on all this because part of me is frankly proud of myself for pulling things off so well, but I haven’t until now. And lack of time has not been the real problem.

The real problem has been that since Christmas, I have been avoiding facing my feelings toward Ralph too closely.  I do his life list, I make sure he takes his pills, takes his shower, eats his meals. But I have filled my days with chores and conversations and decision making that I deal with on my own. And while I dutifully, even obsessively worry about how I can make Ralph’s adjustment as easy as possible—from walking to the corner store instead of driving, to dog walking and poopscooping, to learning his way around a new house—I have felt basically numb where Ralph is concerned. Numb has seemed better than admitting the mix of resentment at having to do everything myself and exhilaration at doing everything the way I want without kowtowing to him as I did through most of marriage.

Or that’s what I have assumed. But then this week I was jolted out of my stupor. Early in January I contacted the neurologist who’d been recommended by multiple sources as the best in Nola for Alzheimer’s. I was told to have Ralph’s current provider, Emory, send a referral. So I called the social worker at Emory who told me to contact my medical provider for the referral. I used the portal that everyone must use these days to send a message asking for the referral. I didn’t hear anything back for over a week so sent a new message, this time to more than one of my providers asking what was up. Someone called me back the same day and said the referral had in fact been sent, I just hadn’t been told. I immediately called the Nola doctor’s office and was informed by the scheduling secretary that less than ten minutes before my call she had received a memo from the doctor’s nurse saying he was not taking new patients. I explained that I had just learned that Ralph’s referral had been sent in a week ago. She was extremely sympathetic and immediately messaged the doctor’s nurse who responded that she knew about us and would call me back“ shortly.”

I heard nothing that day. I called the next day. A different scheduling receptionist found Ralph in the computer as having had contact with the nurse. Again I was told she’d get back to me “shortly.” Again I didn’t hear anything.  For three days I kept my phone at my side wherever I went, kicking myself for not checking with Emory earlier, for not starting the whole process last year in fact, for really screwing up. And just when I had given up and stopped expecting the call, there was the nurse on the phone as if it was the most natural thing in the world. Ralph’s first appointment with his new doctor will be in May.

Suddenly my stupor lifted. Having a doctor in place has shifted my whole orientation. I am still resentful and exhilarated, but more exhilarated than resentful. Now that I’ve found Ralph the doctor he needs, I know everything else will fall into place

 

PS  I should have gotten the ball rolling sooner. If anyone reading this is contemplating a move, start your doctor search as early as possible. Alzheimer’s specialists are at a premium. I feel a new empathy for expectant parents who put their unborn babies on waitlists for daycare and preschool.

The Moving Process for An Alzheimer’s Spouse

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I know I have not been posting as often as usual, but this moving thing is sucking up my life. And giving me new insights into my life with Ralph.

First there are the practical mechanics. And the financial mechanics. And the physical mechanics.

Then there are the emotional mechanics, which are not mechanics at all, but underlying realities.

So about the mechanics—whatever problems our marriage had, and there were plenty—I was spoiled for over forty years when it came to mechanics. Practically speaking, Ralph was the one who made decisions about what we needed as homeowners; he dealt with contractors and service people because he understood their language and knew how to do the jobs himself while I didn’t. In fact, physically, I was an inept moron. Ralph did not trust me to do much more than change a light bulb. I have to admit here that I didn’t try very hard to win his trust, preferring to let him take charge. Financially I was not inept, but although I did balance checkbooks and do much of the bookkeeping, Ralph did the heavy lifting when it came to making financial decisions like dealing with our accountant on long term planning, deciding what price to take on selling or buying real estate, choosing insurance plans.

Now all practical matters are in my hands. For better worse, Ralph trusts me completely to make decisions. He doesn’t do physical chores, although he is happy to carry boxes I’ve filled to the car, a fact I am extremely grateful for especially since he never complains the way he might have in the past. He has no interest in dealing with contractors or service people or even lawyers and accountants. He asks how things are going but doesn’t want to hear if there are problems. And I have talked here before about his lack of interest in financial issues.

None of this is new but the stakes are higher, the decision-making and activity more intense. I am making choices for his well being but also my own. I am elated at moments when I see how much I am accomplishing on my own and I am fearful and resentful at how much I am doing alone without someone to share doubts and fears with.

So to be honest, I am proud how competent I have proven in navigating the business end of things (although since the farm is only under contract at this point, I don’t want to jinx myself there). There was a whirlwind of the kind of negotiations and quick responses Ralph always relished; while he’d ask my opinions as a kind of devil’s advocate, he was the decider. Now I make the decisions and so far, they have been working well. I also seem to do fine working with contractors and service people. I admit my ignorance but I ask questions. So far no one has cheated me; if anything they’ve gone out of their way to be helpful. Not only am I proud of myself. Ralph is proud of me too.

Of course he has no clue that there have been snags and problems along the way. He doesn’t want to take on the devil’s advocate role he used to hand me. And I have learned I should not discuss my own doubts with him.  Whenever I do slip up and talk openly out of the need to think things through out loud, his anxiety sends him into the loop of repetitious thinking and questions that drive me crazy. Better to say all is going well, even when it maybe isn’t.

The result is that I don’t have a partner with whom to share my own anxieties while I am managing his anxieties too. I am pretty much on my own. But I know plenty of folks who are living alone and manage on their own just fine. It’s only a big deal for me now because I had different expectations. And frankly I am getting use to my new normal. While I often still feel scared or lonely, it is not all bad. I have grown in ways I might not have expected at this point in my life.

Also it’s a relief that I now live with someone who won’t mind if the wallpaper I splurged on for the powder room is more flowery and girlish than Ralph would ever have allowed. But then again, what if it’s hideous once it’s up and I have no one else to blame but myself.

TWO DISTURBING ALZHEIMER’S SPOUSE DREAMS

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I don’t usually remember my dreams but in the last week I had two about Ralph.

Dream 1.

I am in a school building with Ralph When he heads to the boy’s bathroom, I can’t follow him. But he doesn’t come out, and he doesn’t come out. I decide I must have been pre-occupied and not noticed him come through the door. Or maybe in the dream I am pre-occupied, enjoying myself, and then I realize I have  I missed him coming out the door. I start to search for him, walking down various corridors but stopping along the way to have small happy adventures. I never find him and wonder how I’ll explain to people that I mislaid him. When I woke I felt unsettled, as if the dream needed to be finished. I felt the need to double check that Ralph was indeed in the bed, safely asleep.

Dream 2.

Ralph announces he has fallen in love with another woman and asks my permission to get a divorce. The woman and I talk. I ask if she is prepared to take care of Ralph if/when his condition worsens. She says yes. She seems perfectly nice and normal, but I find it odd that Ralph says this woman, whom I evidently know slightly, is his intellectual soul mate. I feel a little hurt since before we married or even dated  we were intellectual buddies.

My stronger reaction, though, is curiosity. I ask Ralph what he talks about to the woman, who wears a 1950s-style black dress and wide brimmed hat. After all,  he and I don’t have more than perfunctory conversations most of the time. Ralph tells me they talk about real estate, the subject that used to obsess him but that he now avoids discussing—somehow in the dream I think to myself about our awake life. We are in a room together, maybe a restaurant, where I begin to worry about the woman’s motives–is she after his money [that part of the dream probably comes from reading Anne Patchett’s The Dutch House in which a second wife cuts her husband’s kids out of their inheritance]. Suddenly I realize Ralph’s kids are protected by his will. Relieved, I decide to let the divorce happen. He and the woman are very grateful. I am glad to be making Ralph  happy and also happy that now I can move to a smaller house and live alone.

One dream of losing Ralph physically, one of losing him emotionally. Losing or chasing to lose. What these dreams reveal is both obvious and murky:  ambivalence, ambivalence, ambivalence.

Our New Best Alzheimer’s Buddies

 

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So the other we got together with a couple we met years ago and always liked although we saw each other mostly at parties thrown by mutual friends. Or at the grocery store—actually I have run into the couple surprising often at Publix, every six months or so. We always end up talking in the aisle for ages, promising to call to make a date that never happens.

We got together this time through another mutual friend who thought the couple might be interested in buying our farm. At her suggestion I called “Jo” and “Jordan” who invited me to stop by their house in town to talk. I had another meeting scheduled at 2 so I dropped by at one for a quick visit. Once I sat down, it became clear we had more than real estate to discuss.

One of them Jo has been having some memory and confusion issues. Their internist, (who happens to be my internist as well) recently sent them to a local psychologist who gave Jo the ten minute memory test, which Jo passed.  But Jo and Jordan both sense something is wrong. And they know, because I told them one day in the bread aisle, about Ralph’s diagnosis.

So for an hour they talked about the problems Jo has been having and asked me questions in an atmosphere of mutual trust. Before I rushed to my other appointment, we agreed they should come out to see our farm the next day (although it was clear they were not going to buy it). In the meantime I printed out research information and the phone numbers of resources.

The next afternoon Ralph and I spent several hours with Jo and Jordan. It was different from any other socializing we have done in years.  We all chatted a little. Than while Ralph took Jordan off to show off the farm, I spent time with Jo. Then we all spent time talking together, going deep and honest fast. We shared details and insights about our current situation. Ralph was articulate about what he feels and struggles with, as was Jo. Whether or not Jo’s cognitive problems will lead to a diagnosis similar to Ralph’s, they share similar difficulties and it was obviously they found describing their problems to each other easier than they have to outsider.

“Oh yeah, I get that.” was the mood of the afternoon.

So what made the afternoon so special, was that it was so relaxing. Ralph and Jo didn’t feel forced to be together, the way Ralph felt when he the support group (at my insistence), but it was obvious he and Jo could talk openly in a way Jo never would normally in a group. There was no anxiety about trying to keep up.  Instead there was laughter over the kind of memory jokes my friends and family would probably never make in their sensitivity to Ralph’s condition. But we could with another couple facing the same issues. God it felt good.

Of course, the bittersweet news is that we’re moving away soon, but meanwhile I envision spending quite a bit of time with our new best friends. And once we move, finding Alzheimer’s friends is going to be a priority, one I’ve not really considered until now.

Future Ready? Not Quite Where Alzheimer’s Is Concerned.

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I have not posted much recently because I’ve been caught up in a flurry of moving preparations (although the move is months away), arranging repairs and renovation at the new house, starting the process of getting rid of stuff at the old. And in that flurry I have probably not been paying as much detailed attention to Ralph as usual. But we just spent half an hour together in my car after dropping his car to be serviced. In that time we had this exact same conversation close to ten times, approximately every two to three minutes:

What else do we have to do today?

Dr. Ling at 1.

What time will the car ready for us to pick up?

They’ll call us when it’s ready.

Should I leave the dogs locked up?

Yes, because we have a doctor appointment.

 

I’m used to the repetition of course. But it seems to have become more intense lately. I casually asked him whether he’d noticed any changes in his memory.

No. Have you?

Yes, I said then caught myself so added to soften the blow,

But then again my memory is worse too.

In fact, it is worse and I worry frequently about a factoid I read early on—that Alzheimer’s caregivers are statistically more prone to develop Alzheimer’s than the general population.  Every time I lose my keys, cell phone, or someone’s first name I do panic a little. And to my dismay, those occasions are increasing.

But Ralph loved my answer.

Well, that’s not going to be good, he laughed. We’re going to be rambling around the house saying “Who Are You?” to each other.

Yep. I forced my own laugh, thinking of the changes I am making in our new house to make it both wheelchair accessible and generally easier for caregiving down the road. Ralph is not ready to think about that possibility in a real way, but I have to. Just writing that makes me realize why my anxiety level has been high and why I have been avoiding posting here—the act of moving brings our future into stark, unavoidable relief.

This Inattentive Alzheimer’s Spouse Gets Caught

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So hours after bragging about how beautifully I’ve handled Ralph lately, I naturally got my comeuppance.

Shortly after I posted my little self-congratulation, Ralph announced that he could not find his phone. Misplacing a phone is as common as morning coffee for most of us these days, why the find-your-phone app is essential as that morning coffee. But Ralph’s basic flip phone, which he has never been willing (able) to switch from, doesn’t have that app. So there was no find-your-phone button we could use. Instead we (I) dropped everything I had on my schedule to begin the search.

“Have you checked your car?” he asked every few minutes, and I dutifully looked there again. He had not been in my car for days, and I had seen him on the phone the night before but anxiety pushed him into one of his memory loops. He was sure he had placed the phone in my passenger door pocket although he had not been in my car since a visit to the dentist the week before.

As we searched I thought about how important Ralph’s cell phone has become as a safety net. Thanks to the cell phone Ralph and I each have a degree of independence we might not have. I can check on him regularly. And he can push one button and talk to me wherever either of us is. But my comfort level depending on the phone assumes I can trust he has one nearby and will pick up. What if he’d lost the phone while I was out of town or even at the grocery store? The idea of him being on his own and unreachable for days or hours, or even a few minutes frankly, is terrifying. (It might have be time to get to a land-line again). 

We started looking for the phone midmorning. At three in the afternoon I was at Verizon while Ralph waited at the farmstressed out. Fortunately he was  only semi-unreachable since our tractor man, soon to be farm caretaker, was nearby with his phone.

As it turns out, Ralph’s 3-G phone will be obsolete and unusable within a matter of months so getting a new phone was in the cards anyway. I considered switching him to some kind of relatively easy-to-use smart phone, but common sense—and the salesperson—prevailed. Ralph, who had enough difficulty operating his lost flip phone,  would resist and resent a change. The good news is that the updated flip phone I bought looks exactly like his old one, but unlike the old phone it will be connected to my phone in such a way that I’ll be able to locate it and by extension Ralph in an emergency. So the small snafua turned into a win-win scenario-except for the stress and anxiety that took a definite toll on both of us. The lesson I learned: I need to keep track of Ralph’s phone and make sure he has it on him whenever he leaves the house (although while I sit here writing,  I realize I didn’t check on him and his phone before I came up here).

Two days later an even smaller snafu handed me a second reminder about the importance of vigilance. We were invited by some friends for dinner. As we headed out the door, I went to the refrigerator for the bottle of Spanish white wine I planned take along to go with the paella being served.  Evidently Ralph had noticed the wine, which I’d purchased the previous afternoon, and partaken. I was annoyed and let him know it —not my finest moment.

After all, it  was my own fault. I wasn’t paying adequate attention. I should have known that he would see the bottle in the fridge and not remember he wasn’t to drink it. It’s not like this hasn’t happened before, but my mind was elsewhere and I let things slide.

As soon as I yelled at him, he apologized profusely and I felt terrible. I shut up and quickly changed the subject.(And really how trivial and stupid of me was it to be embarrassed about showing up with an opened bottle of wine, as if anyone cared.)  Three days later, he has no memory of the unpleasant moment but I do. 

I can’t help reacting as a wife when Ralph complicates my life. But these petty problems remind me Ralph is not just my husband but my responsibility.  And just because he seems content doesn’t mean I can lower my guard.

ps.The lost phone remains unfound although I imagine it will turn up eventually. I have marked the new one in bright colors to differentiate just in case.

Ralph’s Ready to Move: A Small Alzheimer’s Victory Worth Celebrating

 

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So Alice, are you excited about moving?” Ralph asked last night striding into the kitchen as I was dropping corn into a pot for dinner.

Yes, sure.” I said carefully keeping my eyes on the pot, not daring to ask him the same question back, afraid what he might answer. (Also, to tell the truth, my own eagerness to move is mixed with plenty of anxiety I don’t share with him about the practical details and emotional upheaval involved.)

Well, I think it’s going to be great. I’m over the farm. I’m ready for something new.

What? Did I hear him right? Going to be great? Over the farm? Something new? I listened as he went on to say how much he was looking forward to spending more time with BabyRalph and his big half-sister and looking forward to doing things in Nola.

Was this enthusiastic guy Ralph? My Ralph who greets every suggestion of an activity, whether dinner at a favorite or a visit with his oldest friends  or a call to his children, with resistance? Whose most positive response afterwards is usually “It was okay“?

Yep, that Ralph. He actually is showing a new energized interest. He is choosing to be happy not scared.

I admit I am patting myself on the back a little for handling this major change better than I thought I could. For waiting until the time was right, for slowly readying Ralph for the idea, for involving him in the decision-making even if I might have chosen differently, for spending time each day showing him pictures until he actually remembered and got the mental reality of the move locked in place.

I may be premature in my self-congratulations; so much might still go wrong, like Ralph getting there and being miserable. But I want to share this moment because none of us—carers and carees both— congratulate ourselves enough for all the hurdles we manage each day. I am/we are busy worrying, second guessing and struggling to maintain against the tide of Alzheimer’s, whether it is coming as a slow undertow or massive waves. But facing incapacity, managing meds, making a quick or deliberate decision, swallowing impatience, struggling with frustration, facing grief—it’s hard to remember these are efforts that deserve to be applauded.

So here’s to all we do right despite ourselves! clapping.jpg(And tomorrow when I am back on the dark side, annoyed and impatient, you can remind me what a happy Pollyanna I was today.)