Category Archives: Uncategorized

OUT OF THE HOSPITAL AND BACK INTO ALZHEIMER’S QUESTIONS

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The good news:

Ralph got out of the hospital on Friday afternoon seven days after he was admitted, once the infectious disease lab was able to pinpoint the bacteria and determine which antibiotic he needed. By the time he left his white blood count was back to normal and he had a sense of humor back. The nurses loved him.

 

The bad news:

The bacterium was rare and hard to pinpoint because it came from the mouth of dogs. Since the onset of his MCI, Ralph has had an obsessive need to scratch at the dry skin on his hands, to the point of breaking the skin, so it is likely the infection came from a lick for one of his two best friends.

 

Other bad news:

Ralph has to receive intravenous antibiotics daily until March 16 and because I know my limitations as a nurse, I am not attempting to give them at home. Instead, I will be driving him to get them at the infusion center at the hospital every morning. Our plans to move to Nola on March 5 are obviously delayed.

 

Other good news:

  1. 1. We get to wake up to this view again; since Ralph can’t climb upstairs at this point, I moved the guestroom bed down.
  2. 2. I have learned to ask for help and have received it from so many people. Friends will come stay with Ralph for two nights so I can go to Nola just long enough to meet the movers and set up furniture as originally scheduled. An other friend will bring the dogs down in his truck—actually what was until today Rick’s truck because I have arranged to sell it to him, one large chore off my list!

 

Both good and bad news:

  1. 1. Ralph is happy about the sale and shows no happiness about no longer driving; I am torn between being glad Ralph is not putting up an unpleasant fight and sad that one more part of his identity has been chipped away.
  2. 2. Ralph has stopped smoking cold turkey because a cat scan showed tiny nodules on his lungs that could either be a result of the infection or pre-cancerous. He will have a follow up CAT scan around the 16th to see if the nodules have shrunk. Meanwhile the doctors told Ralph no smoking and he agreed. Of course he doesn’t exactly remember but he continues to agree every time I remind him. And he is not showing any major symptoms of withdrawal.
  3. He also has not asked for a beer, which is good, but then again he has very little appetite in general, which is not so good.

 

Beyond Good or Bad

Ralph’s bout with physical infection has given me a lot to think about as I try to evaluate how much being on the Alzheimer’s spectrum might have affected his physical health and how this physical crisis might affect the progression of his Alzheimer’s.

According to medical people, being on the Alzheimer’s spectrum probably did make him more vulnerable to illness and/or caused his reaction to be more extreme. It certainly made it harder for me to detect something was seriously wrong with Ralph. I am pretty sure the signs of the infection would have been obvious sooner in someone without Alzheimer’s; after all what might seem abnormal in others—sleeping too much, inattentiveness to one’s physical state, lack of appetite, mental withdrawal—seemed almost normal if exaggerated behavior in Ralph. And he never articulated that he was feeling sick.  I don’t feel guilty that I didn’t catch on sooner; if anything I feel lucky I caught on when I did.

What concerns me more now is the ambiguity of his condition now. I have talked about adjusting to “the new normal” as Ralph and our relationship change. Now Ralph is very changed. The no smoking, no beer, no driving are in their way shocking changes. I have professed to wish for them, yet now I see them as scary sign posts if permanent. IF–I suspect Ralph’s taste for beer will return and a fight over smoking may loom in the future.

What I don’t know is whether this physical crisis will have a permanent effect on Ralph physically and mentally. That he is incredibly weak at the moment is to be expected while recovering from a major bacterial infection and while taking strong antibiotics. But I don’t trust he will bounce back. He cannot hold onto the memory of having been sick, has already forgotten the hospital, cannot remember he has an IV portal in his arm.

(In fact as I was writing this he got out of bed and wandered in to where I am typing.

What are you doing I asked.

I need to go to the store for cigarettes.

Remember, you’ve stopped.

Why?

Because of the CAT scan. They found nodules and said you can’t smoke any more.

Oh, I forgot.

And with that he wandered back to bed).

I don’t know if being weakened physically will cause him to lose ground cognitively.

I do know that our relationship has changed, at least for now. I cannot make even the small demands I did ten days ago. I bring him his pills. I feed the dogs and care for them. I tempt him with snacks every few house because he will skip eating unless I remind him. I stand at the shower to make sure he keeps his arm dry. He has no interest in the world or the people in his life. He wants me nearby as his guide—each time the nurse asked him what year it was, he looked at me to give him the answer—but we have almost no conversation. And while I might leave him to go to the store or run a few errands, I cannot imagine leaving him overnight with a life list to follow. The life list is on hiatus.

I assume some of his strength will return. But this episode has exposed his fragility and vulnerability. Also how far he has drifted from the Ralph he used to be. Whether the decline is in the last week, whether it’s permanent, or whether I just didn’t notice before remains to be seen…

RALPH UPDATE—When Having Something Physically Wrong is Good News

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First, I want to thank everyone for your concern.

Ralph is still in the hospital, but the buzzer issue is fixed so we both got some sleep last night (although the fact that I lost both my phone and then my cup of coffee in the course of ten minutes in Ralph’s room this morning tells me I may need more rest.)

More important, new test results came in overnight showing Ralph does indeed have a bacterial infection. I am terrible with medical stuff so can’t articulate the details, but Ralph is now on intravenous antibiotics. More testing is needed to pinpoint the infection so he has to stay in the hospital at least one more night. But he is clearly doing better—still without an appetite and sleeping most of the time but his voice is stronger when he speaks and he seems to be paying some attention, answering questions, even occasionally smiling at a joke. His skin has normal color and his eyes are clearer.

I am obviously relieved. Actually I have come home to do his laundry and to hide all evidence of cigarettes because for now he shows no interest in smoking. Once he’s better, the smoking desire may return but I can hope….

This type of crisis was going to happen soon or later and I’m just glad we survived it. I am now facing a reality I’m not sure I realized, that people with Alzheimer’s are going to react to infections and other physical and also emotional problems more intensely while being less able to articulate what they are experiencing. And while being in a hospital is not easy for any patient, for a patient with Alzheimer’s the stakes and danger are much higher. The hospital medical staff has been diligent and caring, but if I had not been around, his medical caregivers would have been unable to interpret what was normal for Ralph and what was off-kilter.

The hospital doctor says he thinks Ralph will be able to go to his annual mental check up scheduled for later this week. I was hoping to have a cognitive baseline for Ralph before moving, but will tests be accurate right now? Of course I will ask Emory if taking the tests is a good idea and if he’s well enough will probably take him to see his neurologist one last time whether he’s tested or not.

I was going to write that I’m not sure if the hospital stay has had any long-term meaning. But the truth is I know there has been at least one important long-term change. I will no longer leave Rick alone. Maybe it’s been true all along and I have travelling in a fool’s paradise believing Ralph could still function for a few days on his own, but now I have to acknowledge Ralph cannot gauge if he is experiencing a mental crisis and perhaps lacks judgment in general. If I had been gone, I might not have picked up signals that he was falling apart—phone calls can be misleading—and then what would have been the outcome? Whether the slide is steep or still slow and steady, there is a slide and we have crossed a new care-giving line.

 

One Very Bad Day In Memoryland– A Blip or Ralph’s Future?

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IMG_0470This is the view I went to sleep and woke up to this morning and will again tomorrow, a far different view that I posted, was it only yesterday morning? And was it only yesterday that I mentioned a niggling suspicion that something was more “off” than usual with Ralph? It seems like ages ago.

After I posted those concerns yesterday, I went to wake Ralph up for the second or third time in the morning and this time I made him get out of bed. He’d slept for about sixteen hours and although he was not as spacey as the night before (including symptoms I realize now that I downplayed in my post) he still didn’t seem quite right to me.  I couldn’t exactly say why, but intuition kicked in and I called the Brain Center at Emory. They took my symptom description extremely seriously and told me to head to an urgent care. Urgent Care listened to the symptoms and immediately sent me to my local hospital emergency room. It freaked me out a little that Emory was so concerned.

Even as we drove and I repeatedly retold Ralph where we were going and the reason, I wasn’t sure if I was over-reacting. Was there something actually wrong or was Ralph just exhibiting his new level of cognitive impairment (that scary word dementia swirling in my head)? And which would be worse—that he’d had a small stroke (or that a large one was about to come) or that his Alzheimer’s had progressed?

Actually, at this point in real time (real time interrupted every two minutes as I jump up to turn off his malfunctioning hydration buzzer) I don’t know which is true. The hospital admitted him because the tests run yesterday showed his white blood cell count seriously elevated, but the doctors are puzzled because the tests so far show no sign of the infections that usually accompany this kind of count. The count itself  has come down somewhat today, perhaps because Ralph has been getting intravenous hydration, but the numbers are  nowhere near normal and the hospital is keeping him at least another night while waiting for some more testing results.

Meanwhile, again perhaps thanks to hydration, he seems lucid when he is awake. But, except when a couple of close friends visited, he has mostly been asleep. I’m not sure if he is exhausted by this experience, if he is ill, or if this is about how much he’d like to sleep most of the time at home if I let him. Similarly, is illness or being in the hospital or some combination of both the reason he has no appetite and is generally shaky weak and without a modicum of energy? More worrisome because so out of character, Ralph has not asked about his dogs; nor, amazingly, has he voiced any interest in smoking.

The doctors have said that cognitively compromised individuals are more prone to becoming disoriented as a result of what would seem minor illnesses or health issues, including anxiety, for others. Given that we are moving in three weeks, (and don’t let me get started on the practicalities that threaten to go awry now) Ralph is certainly under stress. But has the stress caused him a temporary physical and mental set back or has his new normal dropped a notch or more. The doctors tell me I did the right thing in bringing him in, and given his blood count I guess they are right, but I wonder if he is now on a slope that is only slippery but also more steeply downhill than I am ready to handle.

And there goes that damn buzzer again!

 

 

Missing the View Ralph Has Forgotten

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This is the view Ralph and I have woken up to for over 25 years but no more. Although we don’t move for another two weeks, I took the mattress and box springs to Nola last week (so Rick will have a bed waiting for him when we arrive). For the last days here we are sleeping in our guest room in the antique double bed we slept in when we first married. A kind of poetic justice.

Waking to that view, though, was always my favorite thing about living on this farm I came to against my wishes; at times it was the only thing I liked about living here. Since there are no neighbors except a horse or two, we never bothered with curtains, and whatever the weather, sunny or cloudy or stormy, it was wonderful to sit in bed with a cup of coffee looking out.

Our bedroom always had a good view, but about 12 years ago, around the time we became empty nesters, we did some renovating and enlarged our span of windows. Afterwards Ralph and I went through a period of intense bird watching. We set up feeders outside the windows and armed our selves with bird-watching guides. Ralph made sure the feeders stayed filled. We had struggled in our marriage, particularly because we seemed to have few interests in common except our work and kids, but with the kids gone, we had more time before heading to work and the bird watching became a shared focus.

By the time Ralph was first diagnosed with MCI, evenings were when he functioned least well. We stopped hanging out together much once the dinner dishes were cleared. But mornings, he was sharper. I made a point always to be available from eight, when he woke up, til about nine. We’d bring each other coffee in bed—sometimes I made it but just as often he would—and spend an hour listening to NPR and talking about the view out the window. During that relaxed hour I would bring up subjects that might be harder to discuss other times of day. Ralph’s memory seemed better in the morning and he would converse with surprising clarity and even humor. Then around nine, he’d want his first cigarette and I’d start my day.

I’ve been telling myself we still have that schedule, but we don’t. I still wake up at sixish and read or do work. But now I have to force him to wake up, and although he goes to bed earlier and earlier, it’s getting harder and harder to get him going by eight. And even if I do, I end up drinking coffee alone because he goes to the porch to smoke as soon as he’s up. More than once lately, I’ve come home from a morning errand to find him still in his bathrobe on the porch as noon approaches.

This is a change that has crept up on us, but as I prepare us to move, I’m suddenly aware and worried that there are more changes I’ve been ignoring. A decrease in conversation, less care in how he’s dressed,  a vacancy around his eyes. Tonight he seemed particularly out of it—even momentarily confused where to find the milk he always pours himself for dinner.    I asked if something was wrong. He said he felt unwell, but when I pressed him, he said he didn’t ache or hurt,  just felt “spacey.”

I want to think he was just having a moment due to the strain of the move. The truth I am afraid to face is that Ralph is accepting the move because he has withdrawn so deeply into himself. He gets tested next week so I guess I’ll find out then.

Meanwhile, what I already know is that Ralph has forgotten the birds and the view. Funny to think I’m the one who will miss them.

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

Alzheimer's Family Issues, Alzheimer's Spouse Issue, Uncategorized, , , , , , , , , ,

 

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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.