Tag Archives: Personality changes MCI/Alzheimer’s

PANIC ATTACK! (mine)

IMG_0342It is 3:57 and I am wide awake thinking I may have screwed up royally this time.

We are at our vacation cottage in North Florida (actually a garage apartment with no house attached but that’s another story for a another time). We got here around seven this evening after a rough day. I had risen early to bake brownies for a baby shower I was co-hosting at a friend’s house . While I was at the shower, Ralph and my 12 year-old granddaughter loaded our truck according to my checklist. When I got home at noon, I quickly cleaned the brownie pans, went over the checklist, packed the coolers, and into the truck we all jumped.

It was a long drive of especially after we received a couple of texts from our daughter and son-in-law who arrived in Florida the night before.      1. They texted that the garage was infested with fleas and they had set off a flea bomb.          2. They  mentioned that Ralph’s boat motor seemed to be missing a part.

So Ralph divided his fixated attention between the fleas and the motor, asking me questions I couldn’t answer on one issue, then the other for five hours. Thank God for the car games my granddaughter insisted we play. I have never enjoyed Ghost and Twenty Questions so much.

By the time we reached the cottage I was exhausted. We had a quick, late dinner before I unpacked and went to bed at around 11:30.

About an hour ago I sat up wide awake

—Ralph’s doc kit? The kit where Ralph keeps his toothbrush, his razor, his e-cig charger and his Alzheimer’s meds. The thought of it had pulled me out of my deep sleep.

Or rather the thought that the kit wasn’t in the black footlocker when I unpacked it. So I tiptoed barefoot down the narrow stairs and outside to the truck. One carton of diet soda left under the back seat, but no doc kit.

Which brings me to now.

My mind is racing: Ralph and my granddaughter said they had packed it when I went over the check list but why did I take them at their word. Ralph can’t miss his meds for five days, that’s the bottom line. It’s the wee hours of Sunday morning. Can he miss a day until I can get his doctor to call in a prescription Monday?

Up pops the angry question, “Why can’t Ralph remember one thing!” followed by the obvious answer, “Because he literally can’t remember.”

So it is my fault.

Why didn’t I check the truck before we left? When am I going to learn not to take Ralph’s assurance he has remembered as actual assurance? When am I going to accept that I have to check and double check behind him? When am I going to realize that I need to pay attention to Ralph’s needs with more undivided focus?

  This trip is going to be a disaster!

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Nine A.M. Sunday morning and guess what—

Disaster Averted. My wonderful, adorable granddaughter did follow the check list to the letter. She did put the doc kit is in the truck after all. It was lying on the floor by the front passenger seat where I guess I didn’t look carefully enough last night.

I am the one who forgot. I am the one repeating myself this morning. “I am so relieved!” “I am so relieved!” I am giddy with relief. (But really, I should have double-checked the truck before we left, and will not make that mistake again, for my own peace of mind as well as his well being.)

Now, if it ever stops raining, we might just have a good time…

 

 

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

 

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

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

But I didn’t.

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

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

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

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

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

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

FEAR is the word that pops into my head.

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

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

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

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

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

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

Ralph’s Good Memory Mood Lets the Good Times Roll

 

IMG_0154.JPG                                           (rainbow at our farm one recent evening)

Anger, resentment, frustration, impatience, worry, guilt—wow, I have really sounded like an unhappy person lately.

But spring has arrived, the sky is clear, and so far the mosquitoes are staying away.

Also, Ralph is in a good mood.

Which means that he is in a good memory mood. Which means he is relatively relaxed. And when he’s relaxed, his memory lapses don’t escalate. And I have more patience. So the cycle turns positive instead of negative.

It helps that our son is visiting for two weeks—an unheard of treat although since Ralph’s diagnosis he has really stepped up to the plate in terms of making time to spend with Ralph. Last weekend we threw a dinner party with my son’s friends and ours in attendance. Guess who was the life of the party? (“Ralph is so smart and funny,” one of our newer friends said to me the next day.) And I had a good time too.

In a couple of days our sixteen-year-old grandson is arriving for one of his understandably infrequent visits from his home with our former daughter-in-law in Namibia. S’s father, Ralph’s son from his first marriage who now lives in California but talks to Ralph on the phone at least four days a week now, wants S. to have some quality time with his grandfather while he still can.

Everybody will be here to attend the art show Ralph’s art class is having on Saturday. Ralph is the only male in the class. I suspect he’ll be feeling the love on Saturday.

Then on Sunday, we’re having a picnic for S’s extended family—Ralph’s first wife with her husband, kids and grandkids as well as S’s mother’s sister’s growing family. It sounds complicated, lots of blended families.

But the thing is, there will be lots of kids here. Kids love Ralph and he’s great with them. He’ll have a ball.

As for me, it is interesting, because my reactions have become oddly less complicated. If anything, I am surprised how little I mind doing all the organizing legwork.

In the early days of our relationship, I used to resent Ralph’s charisma, his skill and desire to socialize. I wanted him to pay me the attention he paid everyone else, and I often felt like an uncomfortable afterthought among his friends.

Now that our life together has reduced down to a narrow, often lonely routine,  I get more attention from Ralph than I need or want (although I do sometimes get jealous of the dogs I suppose). So it is a gift to see Ralph caught up in the whirl of social interaction with others for a change, to see him following and actively participating in conversations.

While the others laugh at his jokes, I can relax and enjoy Ralph himself in ways I forgot, if I ever recognized, were possible.

Let the good times roll.

Mea Culpa–Sometimes This Caregiving Spouse Gets Angry (And That’s OK)

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Ok, so the truth is that I have been walking around all week furious at Ralph. Is that allowed, to be angry with someone with cognitive impairment? I have a voice in my head that I’ll call White Rabbit but that I also imagine (perhaps unfairly, but if I’m going for honesty here…) represents Alzheimer’s activists who would tell me, “No you don’t have that right. You can’t expect him to be a practical helpmate. You have to support him, not the other way around. You are a selfish bitch.” (I don’t really imagine the activist saying that last bit, but White Rabbit definitely.)

Well, my answer, this morning anyway, is so what? And I think it is important to accept my real feelings. As I try to define my role in Ralph’s life going forward, it doesn’t help to sweep the uncomfortable, unpretty emotional bits under the carpet. And the fact is that some of the ways he infuriates me now are no different from the ways he infuriated me before he was diagnosed.

So why am I angry this week? The details as I try to put them in typing sound almost silly: We have a rental townhouse in Florida that was recently flooded out after the neighboring townhouse’s pipes burst. I have had to take all the responsibility for dealing with insurance and repairs. I have been doing a lot of driving 5½ hours each way for 24 hour visits. This weekend is the final push—taking all the supplies and furnishing unavailable there and setting up the place. Usually I go alone but I need Ralph’s physical help this time. And he is driving me crazy.

I understand that when he repeats questions or statements, he really cannot help it. I may get impatient but I do understand. I understand why he keeps asking why we’re taking all these things to Florida, why he can’t remember to do the basic tasks he’s been assigned, why he keeps saying we can fit everything in the back seat when we obviously can’t since it’s already full. The annoyance of our repetitive dialogue gets on my nerves but is not why I am angry (well, a teensy bit).

I am angry because his obliviousness, which I usually convince myself to accept as a symptom of Alzheimer’s, is nothing new. During most of our marriage I could not depend on him when I was overwhelmed with responsibility.

And that’s what rankles.

Because I may be Ralph’s caretaker, but I’m also his wife. I imagine the wife role will recede more than it has already—and it keeps receding as our communication becomes more limited and we share less and less except the mildest chitchat—but for now the wife in me still has stored resentments that burble up when I’m triggered into remembering all the other times I couldn’t count on him, when he was self-important and impatient with my requests for help, when he was belittling, when he was generally a jerk—and all the times he was a delight too of course, but that’s another conversation.-

Scattered,Bothered and Bewildered Am I–But Not a Nurturer by Nature

tire change

So yesterday, driving Ralph home from his shrink appointment in Atlanta an hour away, I hit a curb and flattened three tires. The day before I was writing an important email to an editor I wanted to impress and somehow hit send halfway through the first sentence. Sunday I was annoyed that all the guests arrived late to the brunch/shower I was co-hosting until I discovered the invitation said 11:30, not 11:00 as I assumed. (Well, my co-host got that one wrong too).

I tell these screw-ups on myself because I am aware that lately I have not been paying attention, that I am even more scattered.

Of course, I sometimes worry that I am “catching” Ralph’s Early Alzheimer’s, but more likely I am paying the cost of doing business as a caretaker without a caretaker personality.

The other night a friend from my adolescence called, and we had one of those wonderful rambling two-hour phone conversations that seldom happen anymore. Back when such calls involved sitting on the floor mindlessly twisting the phone cord while I chatted, she was the one everyone in our circle assumed would be the one with a big family. She was the warm, loving one. I was the one with edge.

But the other night she told me that dealing with her elderly parents who live across the country has taught her that she is not a nurturer after all. Fortunately, her more nurturing sister is taking most of the daily responsibility.

I have never thought of myself as the nurturing type either. As far back as I remember I was angsty and rebellious, even as a toddler. My younger siblings will attest that I was seldom a protective older sister. I avoided my family whenever possible. At thirteen I decided I wanted to be a Jewish nun to avoid marriage and children.

Yet here I am. I helped raise a step-son and two kids of my own. After my mother-in-law had her stroke, I was primary caregiver until her death two years later. After my mother had a psychological and physical breakdown, she moved in with me for the next nine years until her mid-nineties when she spent her last months in a nearby nursing home.

And now I am transitioning from Ralph’s wife to caregiver. The shift has been more gradual, luckily, than in many Alzheimer marriages, but it is always in process. And if Ralph is still in denial, I am less and less.

The patience required doesn’t come easily to me. I read other caregiver blogs and am amazed at the resilience, the selflessness, the willingness to give up so much.

I am not so willing. I have if anything thrown myself into more activities, begun more friendships. And although I do bite my tongue most of the time and don’t think Ralph notices too much, I am impatient.

And I am not as focused on Ralph’s needs as a nurturer would be. I don’t know what he is doing for hours each day. I encourage his painting, but I don’t push him to listen to music or talk about his past the way I know I should. I don’t get him to dance or bowl or join some activity to get him out and about. I don’t suggest we take walks together because I like walking with my women friends more.

And you know what, I am not a bad person. This is what I tell myself, anyway. I do what I can.

And I just need to calm down, take a breath, and put one foot in front of the other without tripping on my shoelace again…

The Larry David Cure for Dementia

LARRY david

It was just turning 8:30 pm. As usual, Ralph was already in bed with the lights out. He goes to bed by eight most nights and will sleep past eight in the morning if I let him. He is genuinely tired, but I also suspect that he doesn’t know how else to fill the time. Neither books nor television hold his interest for very long. Neither does music or the kind lengthy conversation he used to be famous for.

I was in another room half reading the newspaper, flipping TV channels, thinking a little guiltily about a recent comment from Going Gently into That Good Night about the way those with dementia suffer.

Mostly, though. I was feeling sorry for myself over having another long night alone—no need to remember that in my thirties and forties, a night to myself without family would have seemed a gift; that’s another story. Suddenly I stopped clicking.

Because there on some random cable channel was The Larry David Show. Actually an hour and half of Larry David episodes was listed on the schedule. I rushed into the bedroom and turned on our set in front of our bed.

Ralph grumbled when I woke him, but he sat up. After all,

“I am nothing like Larry David,” Ralph said when I reminded him how the kids used to tease him that he was Larry’s spiritual twin,  (Of course they teased me that I was the spiritual twin of George’s mother on Seinfeld) but soon he was sucked in. Ralph began to chuckle. I began to chuckle. Sometimes I had to explain a character who had been introduced earlier, but Ralph had no trouble following the complexity of the wit. We laughed out loud at the same jokes.

The three episodes flew by. It was ten o’clock and Larry was over. Some lame movie started, but  I wasn’t  ready to go to sleep. Miraculously, neither was Ralph.

I switched channels. Another miracle: there was Seinfeld.

seinfeld

And one of the classic episodes. Jerry’s car is stolen by his mechanic; Newman and Kramer try to make their fortune with a mail truck full of recyclables; and George, after being sent briefly to a mental hospital, can’t get a tune from Les Miz out of his head.

“This was fun, wasn’t it,” I asked and Ralph agreed. As he rolled over to sleep, I turned off the television plotting what other comedies we might watch.

Then I tried to sleep, but George’s damn song was in my head.

“Master of the house,” I sang softly.

Ralph hooted. I repeated the line. Soon we were whooping it up like five-year-olds.

God it felt nice. I honestly cannot remember when we last shared such a genuinely good time. No soft-pedaling or covering for memory lapses, no manipulating behavior, no compromising my needs for his, no resenting the limitations of our life.

Just Ralph and me laughing away on the same joyful wavelength.

A Benefit of Ralph’s Cognitive Impairment–My Strengthened Self?

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Last week I posted information about a study concerning the impact of Alzheimer’s on women. Since then I have found myself thinking in a more deeply personal way about how I have been impacted, specifically in terms of my sense of identity as a woman.

My (even) more self-centered than usual thoughts are flowing after spending a weekend with an old college talking and eating non-stop (the eating important since the setting was New Orleans).

Jane and I explored the challenges that shaped us over the last thirty years and the directions in which we are currently evolving. We talked a lot about whom we have each become and why. It turns out that we have remained alike in many ways—our politics, our private and social ethics, our taste in food, even our TV preferences.

But there is a major dividing line: I have a husband and children. She doesn’t.

In college, despite high ambitions and avowed feminism, we shared a tendency to let men we loved take over our lives including those ambitions. (Ironically, the fact that we were at different times drawn to the same young man brought us closer as friends.)  In our twenties, we each married a charismatic if self-absorbed man with big ambitions of his own.

Then our life paths diverged.

Jane’s marriage lasted only a few years. After the divorce, she went on to have an extremely fulfilling life with an exciting career and plenty of important friendships and relationships. After Jane’s early marriage to a dominating man ended in divorce, she went on to have an extremely fulfilling life with an exciting career and plenty of important friendships and relationships. She has her regrets, but she has developed an amazingly strong individual identity, which includes confidence that she is a woman who can take care of herself. She is not certain that she could have become that woman within the confines of a marriage.

My marriage—to Ralph—has lasted and my primary identity became tied up in being a mother and a sometimes resentful wife struggling not to be overshadowed by Ralph’s powerful personality. I fought to forge my own identity, eventually publishing several books including my first novel.

But I never put my ambitions first and in our shared life, I usually let Ralph get his way in decision-making. I would rail against the decisions he made—like to move us to a farm or buy a certain car—but I always went along. And when one of Ralph’s decisions went bad, as they sometimes would, I could always think not my fault.

Jane did not have that luxury. She had to make every practical and metaphysical decision concerning her life on her own, and then she had to live with the consequences.

So now she is a woman used to making decisions for herself, used to the tension and the fear and the joy, and I am a woman learning to make those decision for myself and for Ralph.

Making decisions alone requires a mental muscle I never adequately developed and now have to exercise. Ralph no longer has any interest in making decisions. Along with memory loss, his mild cognitive impairment has caused a major personality change. He is the passive one who cheerfully, and without the resentment I used to feel or any questioning, goes along with whatever I say.

I am not downplaying the reality of Ralph’s cognitive impairment and its negative aspects. But learning to cope with Ralph’s condition has created a potential for growth for me as a woman. It is scary and intimidating to be the decider, also liberating. I am learning what Jane learned over the last thirty years: to be strong-willed, self-reliant, independent, and in charge of my own happiness.