Tag Archives: Moving with Alzheimer’s

Moving “With” Ralph

Alzheimer's Spouse Issue, Uncategorized, , , , , ,

 

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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

Alzheimer's Spouse Issue, Uncategorized, , , , , , ,

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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.

Ralph–A Change of Perspective

Alzheimer caregiving, Alzheimer's Spouse Issue, Uncategorized, , , , , ,

Ralph and I just spent almost a week in New Orleans together babysitting while my daughter and son-in-law were away. With the change of scenery came a change of perspective.

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Here on the farm, life plods along. We get up in the morning and drink our first cups of coffee together and then we go about our days.  I have various deadlines, meetings, and activities at home and around town that keep me active so I’m not necessarily paying attention to how Ralph is filling or not filling his time. Of course I check with him regularly to make sure he is following his life list and of course he calls me repeatedly—whether over the phone or in person from the bedroom to the kitchen or over the phone from the bedroom to the kitchen—to ask whatever question has lodged in his brain for the day. And yes I am increasingly involved in getting him to do small activities (Did you take a shower? is one of my favorite nags and is about to go on the life list) and driving him to doctor appointments. But I don’t yet have to think about him minute to minute.

In New Orleans, we were much more in each other’s faces. While BabyRalph was in pre-pre-school, Ralph and I were alone in a house with an open floor plan where neither of us had space to escape to. Ralph wasn’t tucked away in an office or the bedroom. Ralph actually found the stairs to the bedroom too steep to climb more than absolutely necessary, a fact I have to note as I look for a house for us. He was either on the living room couch “reading” (mostly with his eyes closed) or on the back porch smoking. I was sitting in the kitchen trying to concentrate at my computer as he asked me repeated questions when he wasn’t sleeping.

And then there was the smoking. At home, although it drives me crazy that I can’t sit on my front porch anymore, I can almost ignore his smoking. In New Orleans I was responsible for a two-year-old who cried to be with his Bop. If I said, “Bop is outside,” BabyRalph said, “I want to go outside with Bop.” Of course I couldn’t let him outside with Ralph, or to play in his own backyard where the smoke from Ralph’s cigarettes hung paralyzed in the damp heat.  And each time Ralph came back inside, he had to, or at least had to be nagged to de-cigaretize (i.e., wash his hands, etc.,) before he could be around BabyRalph.

And he did love to be around BabyRalph. In the late afternoon for a few hours, Ralph and BabyRalph were inseparable. While they played, and that is what they did-play—I was free to clean up the house and get dinner ready. Ralph was fully engaged with BabyRalph in a way his own children never experienced him.  Of course, we are all more playful and relaxed with our grandchildren than we were with our kids. But there is definitely added-value in Ralph and BabyRalph’s case. Ralph was energized by BabyRalph because they share sense of presentness. BabyRalph has very little past to remember, while Ralph has very little memory of a lot of past.  And neither thinks about the future.

But I do. And what I have realized is that the biggest reason to move to New Orleans is not that we need to downsize or get and give family support but that Ralph needs to interact regularly with BabyRalph, oops now ToddlerRalph, as much as possible because those interactions bring him to life in a way nothing else does.