Tag Archives: Alzheimer’s spouse anxiety

TRUST and CAREGIVING

Alzheimer's Caregiving Issues, Alzheimer's spouse, , , ,

Ralph and I are back into a routine after our rocky summer and landed on another plateau of what is normal. The changes I noted over the last months have set don’t bother me so much. And there has been a positive development. Ralph now plays music not only in his therapy sessions but also once a week with a neighbor our age who has been teaching himself the harmonica. The neighbor and his wife are newcomers to Nola and have become what I never expected Ralph and I to have again—couple friends. While our two husbands play music together, we two wives share a glass of wine around the corner. Having  witnessed Ralph get agitated at an unfortunate outing to a restaurant, the couple seem undaunted, particularly since we usually meet in our sun room where Ralph is much more at ease and therefor his most cognitively alert, charming self.  

So Ralph is happier these days, as am I. So I take more time to ponder the larger issues.  And what I find myself thinking about lately is trust. Trust in a marriage is always an issue. Trust as a caregiver spouse brings up another complexity altogether. 

In our pre Alzheimer’s marriage, we had a lot of problems but trust was not high on the list. We never cheated on each sexually. Even when we hated each other, we used up too much emotional energy in our relationship to have any left over for others. Our general modus operandi was to argue, sometimes with alarming openness. Several friends whose marriages fell apart after seeming much calmer than ours have said maybe being so openly angry at time saves Ralph and me. Maybe?  Ralph was nothing if not straight forward and vocal, sometimes loudly vocal, in his views, but I could be secretive, nursing grievances and fears I couldn’t bring myself to share. As we bickered our way toward making decisions together, I didn’t always trust his judgement and he often ignored mine. What I did trust in those days was Ralph’s competence. If he said he could fix the plumbing or make the business deal, I believed him.

Well now the parameters have changed.

Ralph really has no secrets—he says whatever pops into his head, loving or nasty—but he also has no judgement. I have had to teach myself not to trust him to do anything. I can’t ask him to chores because 1., he won’t remember that I asked and 2., if he does remember he’s likely to mix things up. His once amazing mechanical aptitude in shot, he can’t read directions, and he has no capacity to problem solve.

On the other hand, he trusts me completely, a trust I am not sure I deserve. He assumes I will do what is best for him. I try but trust is a burden. I make sure his daily needs are met, but sometimes I hide in another room when I know he’d like my company. Sometimes I say I am going to run an errand when I am actually having lunch with a friend, or even our daughter. 

And I no longer discuss with him any issue of substance, for instance tax issues, business decisions, or whether we may need to move to a different living situation in the next few years.  He has no idea that I have been looking into options and I have no plan to tell him until such a move in imminent. I know that closing to keep difficult problems from him is largely for his benefit and that discussing decisions would have no actual benefit. He has no capacity to think through or even follow and would only be upset. But I also feel a bit uncomfortable with power I suddenly can wield over his life.

Covid with Alzheimer’s–UGH

Uncategorized, , , , , , , , ,

Yep, Ralph got Covid. And luckily it has not been life threatening. But the last few weeks have been “interesting” to say the least. In part because Ralph was the last to fall from our family outbreak:

Several Thursdays ago (I’ve lost track of time) Granddaughter A had her high school graduation Ralph did NOT attend the ceremony or celebratory dinner. I did, along with her three parents and various other relatives. It was a lovely day. Over the weekend A attended graduation parties, then spent a special evening with my daughter and son-in-law 

That Monday A tested positive. Not terribly sick.  

On Tuesday my daughter tested positive. Very sick but went on anti-viral meds which helped

On Wednesday my son-in-law tested positive.  Very sick but went on anti-viral meds which helped

On Friday the one-and-a-half year-old tested positive. Not too sick, but he couldn’t really tell us.

On Saturday Ralph tested positive. Very sick. But like the baby, he really couldn’t articulate well.

Everyone but the baby is fully vaccinated. Everyone but the baby masks. The two left standing, five-year-old  mini-Ralph and I, are still wearing masks around each other; we’re basically not allowed to be around anyone else in the family until tomorrow. 

The thing is, Ralph had not been anywhere, and once A was positive, precautions wen into high gear—masks, washing, and quarantining. Over and over I told Ralph to stay in his room and never never to leave it without wearing his mask. The only people he came in contact with at all were me, Mini-Ralph and the baby since  they had to stay with us once their parents and sister got sick. And I don’t think he was ever around them for more than a few minutes at a time before I shewed him back to his lair. But Ralph did wonder out of his room unmasked occasionally. While I always caught him it was not always immediate and those few minutes mattered. That baby who was not masked was the innocent culprit. He is too hard to resist. I know I snuggled him. And Ralph must have too. But I was never unmasked. That might be the difference—or it might be pure luck.

In any case,  Ralph’s Covid has been difficult for him because he doesn’t understand exact and has complicated life in general for the rest of us, especially my daughter the nurse practitioner who has basically banished me and Mini-Ralph to the second floor (a bit of a problem given I’m still not quite as strong as I’d like on my new hip) and taken over Ralph’s care.

Fortunately over her Covid symptoms (but still masked), my daughter has been sleeping on the living room couch and caring for Ralph while her husband, also post symptoms, cares for the baby at night. They are also back to their jobs, taking turns keeping the baby during the day using up PTO. (A is fine by now, and back at her job.)

Ralph went on the anti-viral meds as soon as he tested positive, but whether they are helping or not is impossible to tell. I haven’t actually seen him, except from a half closed doorway. I do talk to him regularly but 

  1. He doesn’t remember how he felt the day, or hour, before so there is no point of reference. He knows he’s sick but keeps forgetting it is Covid and will ask me what is wrong with him.
  2. He always has a cold this time of year and has been stuffed up for weeks and weeks—I was testing him regularly even before the family outbreak just in case. He is if anything less cold-like than he was, but he is thoroughly listless.
  3. He embraces his listlessness, which breeds more listlessness. So even as other Covid symptoms abate, his lack of energy continues because it always is there. His favorite activity is sleep under the best of circumstances.
  4. The anti-Covid medication gave him stomach issues that others I know also suffered but could deal. Ralph had more issues because he is so passive about his personal habits under the same best circumstances as above. Or because he had to stop taking some of his normal drugs.

I am taking over Ralph from my daughter on Sunday—and sending Mini-Ralph home to his folks. Ralph will be past the infectious stage by then, although masks will be worn. I am a bit nervous but also ready. I am also thinking that barely over two years ago, just before our move to New Orleans, he had to be hospitalized with a blood infection; afterwards his cognitive skills declined sharply and never full returned to their pre-infection level.

I am a little worried.

WHAT HAPPENS WHEN THE CAREGIVER NEEDS CARE?

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

Ralph and I are about to enter new territory, at least temporarily.  And for me at least it will be a new kind of balancing act, mental and physical.

Next week, exactly two years to the day since moving here and one year since I began a cycle of accelerating pain in my left leg and backside, I am getting a hip replacement.  

The good news is that hip surgery is usually very successful and I am thrilled that there is a solution to stop the pain and give me back most of my old mobility. 

But every time the doctors describe what I will not be able to do during the recovery, I wonder how Ralph will fit into the picture. I will be the one heavily dependent on others for around two weeks and then have limited mobility for awhile—i.e. no bending more than 90 degrees, limited household chores, etc., depending on how quickly my body recovers. At that point I should be able to manage my own needs fine, with a little help, but will I have the energy to manage Ralph’s too? And I certainly can’t count on him for help. 

Arranging my own immediate care has been easy. My son came last weekend to prepare the house, putting a TV in the bedroom for me, cleaning my car and moving furniture. My daughter, a nurse practitioner, is taking a week off to stay with me. When she goes back to work, my son will come back until my post-op check up. Reorganiing after-school care for my grandkids—I usually pick them up every day and keep them until their parents get off work—was not my problem but has been taken care of, fingers crossed.

As for Ralph, we are entering uncharted territory. He is clearly nervous, when he remembers the surgery is coming. Typically, his biggest concern is whether he might have the same problem. He also says he will do whatever I ask him to help. I have already taught him many times, each time it is the first, how to load the dishwasher and feed the dog. Actually the dog, who is learning to sleep in Rick’s office instead of the downstairs bedroom with Ralph, where I have re-installed myself to avoid stairs, has adjusted very well.

Ralph’s adjustment may be trickier. He functions best when he can stick to his routine of eat-read-nap.   I am worried that after the first weeks, once I am back on my own yet not back to full strength, I won’t have the patience to keep that simple routine running smoothly. Intellectually I know the details will work themselves—his pills, his beers, the laundry, unloading the groceries, defrosting the stews and casseroles I have pre-frozen—but I have been obsessing because there is something deeper bothering me.

It showed up last week when I had two scares. One was over my blood pressure, which was worrisomely high when I was checked at a pre-op appointment. When I checked it again the following day the numbers were even higher, dangerously high, so high I was advised to take an extra dose of my blood pressure medicine and then when it stayed up high to go to an emergency room. Which I did, driving myself after telling Ralph I was just going to a doctor’s appointment. He barely looked up from his book. Fortunately the numbers dropped and I was home to make dinner. And the numbers have continued to drop so my surgery is still on. 

One probably reason for the high numbers was an attack of high anxiety over the second scare: I was told that my surgery date was going to be changed causing all the plans I’d put into place to be scratched and leaving me alone with Rick and barely able to for five days. Fortunately my surgeon stepped in and said my family situation made schedule changes impossible.  But for a while there, I was petrified. Even writing about the possibility gets my pulse rising. 

The reality is that caregiver spouses have very little leeway. I want to relax into my recovery, and I will try—have books and movies at the ready—but part of me will be worrying about Ralph as much as I’m worrying about myself.

PS. As I wrote this I remembered that a less than a year after Ralph’s initial diagnosis I fractured my right ankle on black ice. Ralph was still driving then and actually drove an hour on his own to meet me in the emergency room. He drove me back to the hospital for surgery on the ankle weeks later and was a huge help in general during my five months off my leg. His reaction and behavior were in sharp contrast to his unhelpfulness, born out of fear and discomfort, when I had a mastectomy ten years earlier. Ironically, MC/Alzheimer’s has made Ralph a person who wants to help but has also ended up robbing him of that ability.

Do You See What I See-the Alzheimer’s spouse refrain

Alzheimer caregiving, , , , , ,

Ralph enjoyed his Christmas from what I can tell. He was not excited about going to my daughter’s house on Chrismas Eve, but he was totally involved in “surprise present” game in which Ralph opened a big cardboard box inside which LittleBoyRalph popped up pretending to be a mechanical toy with an off and on button—both Ralphs had no problem repeating the game over and over to everone else’s delight. Nor was he excited about Christmas dinner but then was charming. I was told by several at the dinner how “good Ralph seemed, better than I expected.”

I always hate those comments, well meaning as I know they are. And KG’s recent response to my last post definitely came to mind. What he wrote—“Others don’t see what I see”—really hit home. I am struck that there are elements of daily life with Alzheimer’s that don’t get discussed because they seems so trivial in the scope of things (the weather and certain small fixations like Ralph’s daily Nutty Buddy) or slightly embarrassing (issues of hygiene come to mind and my allowing Ralph nightly beers). I see the hitches in his most basic problem solving, his passivity (often a godsend frankly, like this afternoon when I had to drive our neighborhood streets aimlessly for an hour because I had a napping child in the backseat and Ralph was perfectly happy in the passenger seat), his social disconnect when he wanders back to his bedroom despite having guests in the room talking to us. 

At the same time, I don’t think I pay the same degree of attention as I used to in the early days. I’m afraid I don’t note as carefully as I used to every small Alzheimer’s wrinkle as it crops up. I don’t worry so much about whatever new normal has arrived. Everything is normal.

I think I see Ralph as clearly as I need to. But then he still can surprise me. Ralph used to be something of an artist. After his diagnosis of MCI I found him an undemanding art class he attended weekly with great devotion for years, but then the teacher had to stop teaching and although I set up a studio-office for him behind our house here, he has not picked up a paint brush or pencil since we moved in. Until yesterday.He had found a blank artist pad I’d bought at the drugstore for LittleBoyRalph and sketched from memory our old dog house on the farm as well as some kind of fighter jet. He also wrote his name on the sketch pad to make clear it was his. It now sits between the cushion and arm of his chair. I am amazed at his initiative and his spark of pride, like a sudden blip on a flat graph line. I also wonder whether he remembers that the sketch pad, which he didn’t touch today, exists. 

Living Between the Cracks as a Caregiver

Alzheimer's Spouse Issue, , , , ,

Lola has not adjusted to the switch from daylight savings time so last week I started a new regiment. I fed the dog at 5:30 am, was at the pool at by 6:20 and home by 7:40 to bring Ralph his coffee and pills. 

I do not think of myself as either disciplined or a willing early riser, but midweek as I was kicking slowly down the length of the pool on my back, I realized that this schedule was actually perfect and also a metaphor for how I was learning to handle my life in my newest normal by finding personal time between the cracks, even if the crack is at dawn or ten pm.  

Then this Wednesday a child in my four-yea-old grandson’s pre-school classroom tested positive for Covid. Everyone in the class was (understandably) required to quarantine. Because the kids are so young, the school is not letting kids return for two weeks although once a child tests negative at five and seven days he can be around others. Since Four-year-old Ralphie’s one-year-old brother is not vaccinated, the family has divied up. Baby, Papa and teenage sister are staying at their house while Ralphie and his mother are with me. Both parents are working full time. So I have been spending my days masked, like Ralphie, playing hours and hours of his version of The Christmas Elf and of Christmas Day (A lot of the same small household items end up under the tree and in stockings and I get to express great surprise, O a coaster!)

Yes, three days in and I am already exhausted

Ralph, on the other hand, is very happy having Ralphie around the little he sees him. He must be masked when in the same room so has been spending a lot of time with Lola in his room.Since I am basically not leaving the house—no swimming and no socializing over coffee, that’s for sure, also very little time for my editing and writing work— he also has me at his beck and call, albeit my attention is divided.

The cracks in my metaphor have temporarily all been spackled. And yet as I look forward to the time ahead when our schedule re-normalizes into whatever normal may be in two weeks or two months, I have a sense of how to approach my time—I’ll grab what I need when I can, feel not an ounce of guilt for grabbing but also accept the limits. 

Marking Ralph’s Alzheimer’s Six Years In

Alzheimer's Spouse Issue, , , ,

brain

Ralph usually has his annual cognitive check-up in July, but not this year. Because of Covid we have yet even to meet with our new neurologist.  After several rescheduling, our telemed introductory appointment is now set for the end of August and obviously won’t include intensive testing (at least I hope not—Ralph testing by phone would be a nightmare; zoom is going to be challenge enough).

Gauging where Ralph sits on the continuum these days is not easy. Between his hospital stay and slow recuperation, the long preparation for our relocation, the actual move one day before Louisiana went into quarantine, our new home/life under Covid, and Ralph’s anxiety in adjusting, not to mention my own, I have lost perspective. 

Last year’s check-up was uneventful, so uneventful that I wrote no more than a sentence about it in my journal. I had been concerned that Ralph seemed a little fuzzier in daily interactions but he scored pretty close to what he’d scored the previous years. We were assured he was maintaining a steady but unusually slow progression.

By then I was already house-hunting, and our practitioners felt we were moving at exactly the right time, with Ralph was still able to adapt and adjust to a new place.  I remember discussing that I should teach him the route to the nearest stores and coffee shop, then make sure he carried good, explanatory ID and introduce him to storekeepers and others in the neighborhood so they’d know his situation in case he got lost on a cigarette run. 

Fat chance. In the five months since we moved here, Ralph has taken one brief walk with me three blocks around the corner and back. Cigarette runs are unnecessary because he has forgotten smoking all together, thank goodness, and he has absolutely zero interest in leaving our porch. He has been to dinner at my daughter’s house once, seen his internist once and been to a hospital lab for blood tests once. Otherwise he has been in the house. We did spend a week away with my daughter’s family at a house with a pool to escape the heat, making no stops on the way and never leaving the house once we arrived saw how few others were wearing masks; Ralph enjoyed watching the rest of us splash around though he didn’t dip a toe in the pool himself, preferring to follow his usual routine of wake, eat, nap, eat, nap eat, bed.

But does his increased inactivity mean anything under the circumstances. He seems to function fairly well as long as he sticks to his rote routine, which is not that different than it used to be. The big change is swapping in BoyRalph visits for cigarettes, a clearly positive change. 

The less positive changes are all in the gray, hard to decipher margins.

He has never returned to a life list. He had been getting sloppy about following it and then he was so out of it during his recuperation from the blood infection, and so helpless.  Now I don’t trust him to mark thinks off. Or remember where the list is Or maybe the truth is that I find it easier to give him his pills myself, to tell him to shower, to track his meals that I would to nag him about the list plus the actual behaviors it tracks. He can still make a sandwich for himself at lunch but often asks me moments later if he’s eaten yet. I’ve also taken over feeding his dogs, a minor chore he used to like but never thinks about now. I worry that I’m coddling him, but then I try to stretch his world by asking him to do a minor chore like takeout the recycling and he gets slightly but noticeably befuddled.

He hasn’t paid attention to the world for a while, but now he seems to have lost his visual acuity a certain ability to react and judge. I’ve been filling bookcases the last few days and he doesn’t notice the difference between objects arranged on a shelf or placed there helter-skelter to get out of the way. In some ways those shelves are like his thought process, a random organization of discrete thoughts. He doesn’t always button his shirt correctly–true, neither do I on occasion, but then I am mortified; he could care less. 

But I need to take into account that everyone’s memory is worse these days. Everyone is a little depressed and a little disconnected.  A little spacier than usual. A little sloppier. Where does Covid Brain stop and Dementia begin? 

Thinking about that way, I tell myself that nothing I’m describing here about Ralph sounds that much worse than a year ago. But it is worse. I just can’t articulate or even pinpoint the deeper shift–a letting go, a deterioration. Not only of remembering but in comprehending. Conversation is gone which is sad. More depressing, so is my trust in his reasoning, in his ability to care for himself, to think clearly. Less than a year ago, I was able to leave him with his life list for days at a time. Now I am afraid to leave him alone in the house for more than an hour or two.  I’m afraid that is a marker more important than any test. 

TWO DISTURBING ALZHEIMER’S SPOUSE DREAMS

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

DREAM JPEG

 

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.