Tag Archives: Alzheimer’s wife

A Healing Vacation for Caregiver, and Maybe Caregivee

 

The last few weeks definitely created a change of pace in our lives. After I came home from my hip replacement surgery, I was basically unable to do much of anything for several days except walk, with a walker, to the bathroom and the kitchen table. My daughter took over for the next week—she organized and cooked meals, kept Ralph on his schedule and trained him to sleep in an upstairs bedroom, made me rest and then rest some more.

When my daughter went back to work, my son came for the next eight days. He maintained a similar routine although by then I was moving a lot more, in bed less and transitioning from walker to cane. He set up an office for me downstairs and solved myriad computer issues I’d been having. 

Both son and my daughter prepared elaborate, surprisingly delicious meals that took into account my new low-sodium blood pressure diet. They spent lots more time talking with me than I usually get. They brought me hot tea before I asked. Meanwhile, the post-surgery pain was much less than I anticipated, requiring only Tylenol and muscle relaxer. I listened to books on Audible, binge watched the television my son had set up in the downstairs bedroom and did my very easy physical therapy exercises. 

In other words I not only got a new hip but enjoyed a rather luxurious two week stay-vacation. 

As for Ralph,  he got to sleep later than I usually allow, didn’t have to clear the dishes after dinner, and—not that he talked to them very much—definitely enjoyed having our son and daughter hanging around. In fact, he still has not quite ire-adjust to the fact that my son isn’t here, asking several times daily, “Where is J. Has he gone back to New York?” But any change in routine is  difficult for Ralph, even small tweaks in what time he eats dinner, so he also became slightly discombobulated, slightly grumpy and more than slightly anxious.

For the last week we have been back on our own. I still use a cane outside but am walking cane-free around the house. When asked, Ralph loads the washing machine and dryer for me because I am still not quite able. And he carries in groceries that I cannot lift. But otherwise I don’t ask for much more because, frankly, it is easier to do most tasks myself even at half energy. Since stairs are something I do only with care, I still make him sleep upstairs but still let him sleep later than I used to. He has made his own adjustment. He asks me daily how my leg is and wants to chat more. Or maybe I am just available more since I can’t escape upstairs to my office like I used. (He has interrupted me repeatedly as I’ve been typing just now.). He’s actually agreed to walk around the block with me once or twice; we move at about the same pace for now and have about the same stamina, although I hope for my sake that will change.

What I have realized over these weeks is that I am lucky. I have a new hip that means I will be able to resume a more active life that includes walking, shopping, visiting museums, etc. I have genuinely supportive children. And to speak in bare practical terms, l can pay someone weekly to do a light clean and change of bed linens (no small thing since this is one activity I cannot imagine doing at the moment and know Ralph can’t). 

Most important, I have been reminded that all in all  Ralph is still holding steady, still able to function within his narrow parameters, as defined by our yard and his limited daily routine. His Alzheimer’s related limitations can be annoying, but they are not yet seriously debilitating. I want to make use of this time, once my leg is healed and my energy is back to normal, because it may or may not last.

ps. Shortly after posting this, I misplaced my cane and guess who found it–Ralph!

Living Between the Cracks as a Caregiver

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. 

Back Into the Fray: Adjusting To Ralph’s Alzheimer’s world as the Real World Re-0pens

In the first years after Ralph was diagnosed with MCI, I rushed to record all the nuances of his condition and my reactions. Lately not so much. The nuances have become…well repetitive: Ralph’s moments of clarity and confusion, my moments of impatience and remorse, his conversational loops, my problem-solving to work around his lapses. Intellectually I know there has been a slow deterioration but after six years, I don’t notice so much. My life is what it is. Even the last 18 months in a Covid world have made a minimal impact. The routine we inhabit reduces the impact of Ralph’s limitations. 

But a new wrinkle has cropped up:

Now that vaccinations have arrived, so have visitors. I’ve been worrying for months that the new house was too big for us, but it is suddenly the perfect size for the influx of friends and family members who love that’s we’re only a block and a half a block from the streetcar line. Our guest room has been booked for weeks and will be until mid June. I already have “reservations” for the fall.

I suddenly have company for eating, shopping and hanging out, even for watching TV, all the activities in which Ralph is reluctant to participate.

The issue I have to figure out is how to incorporate Ralph. How much to push him to engage, how much to let him be. So far the visitors have been folks who know him know him well and have known him both before and since his diagnosis so Ralph has been comfortable. 

Most recently my oldest friend—we met in preschool—and her husband stayed for five days. While we have seen each other for brief visits (and I have visited them solo quite often), we last spent this much concentrated time together barely a month after Ralph received his initial diagnosis of MCI when we met for a vacation in Savannah.  Back then Ralph was still very much himself in most ways. The only symptom was his tendency to repeat himself, so although our friends knew about the diagnosis they barely noticed any change. That is until he had a panic attack; the husband was alone with Ralph at the time and clearly shaken when Ralph became frantic to find me. His newly prescribed meds, including an anti-anxiety pill, had not yet kicked in and he was petrified and slightly disoriented.

This visit, there were no anxiety attacks. There was a moment at dinner the first night when Ralph did start to fixate on how long the waiter was taking to bring his drink and my anxiety rose because I sensed a loop starting to take shape. But the beer arrived and Ralph settled down before our friends seemed to notice.  Ralph was charming and chatty the rest of the evening. “

He’s better than I expected,” my friend’s husband said with obvious relief, a relief I shared.

The next few days we ate together as a foursome some of the time, and other times Ralph opted to stay in his chair with the dogs at his feet while I took our friends to explore the city. Ralph appeared to enjoy the company although each morning I had to remind him we had guests in the house and who they were. 

At one point as we were driving somewhere as a foursome, women in front, men in back, Ralph joked that the wives would some day be sticking the husbands in facilities once they were “out of it and incontinent.” Everyone laughed as if such a possibility was unimaginable. But I can imagine all too well. 

By the fourth day of being around Ralph, my friend commented on how hard caring for Ralph day in and day out must be. I appreciated her awareness even as I bristled with a certain defensiveness. “Oh it’s not that bad. I’m used to it.”

And I am used to Ralph as he is now, even comfortable with it as long as we’re just the two of us. But as I reconnect with the world outside our front gate, I find myself less and less comfortable. My challenge is now to find a way to give Ralph the comfortable security he needs while keeping myself invigorated and challenged.

When Forgetting The Past Becomes Remembering the Present Wrong

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“So, Alice, when do we have to leave for the birthday party”

I come home at five in the afternoon to find my husband showered, shaved, and dressed in a clean shirt. Sounds great, doesn’t it, Ralph getting ready on his own?

Only problem is that the  party he is talking about is a dinner I wrote about here weeks ago. The one he clearly didn’t enjoy attending at the time.

“We aren’t going to a birthday party.”

“Are you sure. Well, why did I think we were?” Puzzlement all over his usually placid face.

“I’m don’t know. We had dinner for H’s retirement three weeks ago.”

“We did? I don’t remember.” It is almost physical, how hard he is thinking before a memory takes shape. “Oh yeah, it was boring. Well, I’m relieved. I spent all afternoon dreading the birthday party.”

“Since you’re dressed, why don’t we go out to supper?”

“I don’t feel like going out. It’s too late.”

“Are you sure.” He is spiffed up after all, and it would be good to get him out of the house and his rut. Also, frankly, I wouldn’t mind not having to cook.

“No, I don’t feel like going out anywhere.” He shakes his head, standing by the door to the porch. “You sure you didn’t tell me we had to go to a party tonight. Why would I think we were going to a party?”

“I promise, we went to dinner for H’s retirement three weeks ago. Maybe you had a dream while napping and it felt real?”

“Maybe.” He shrugs and heads onto the porch, unlit cigarette already  in one hand, beer in the other, dog at his heels. We will repeat the same conversation throughout dinner but now, clearly shaken, he needs time to himself (as do I).

The way that facts once forgotten can’t be retrieved has become our normal problem as an Alzheimer’s couple, annoying but easily handled. But now Ralph has presented me with a created, or rather mis-created memory. A new process has misremembered, twisted and reshaped a fact before lodging it in Ralph’s brain. Will our new normal problem encompass not simply a loss of Ralph’s sense of the past but a reshaping of his present reality into something unpredictable, unreliable and disturbing.

Alzheimer’s Benefit–Exposing A Goodness Quotient

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I am prone to cynicism in general. And like a lot of people, I have been more demoralized by the state of the world than usual lately. So I am a bit surprised to find myself celebrating what, for lack of better phrase, I’ll call the goodness quotient in human beings.

Martin Luther King Jr., Gandhi, Anne Frank, Nelson Mandela, Saint Francis—their lives are awe-inspiring and intimidating in equal measure. They have had their human imperfections here and there, but few of us aspire to their level of goodness. At least I never have. (In fact, I admit to spending MLK Day sitting around the house when I should have been out volunteering.)

But after reading the recent spate of articles surrounding Reverend King and John Lewis as well as a post entitled Gratitude in the Land of Dementia on the blog One of Life’s Little Surprises, I am struck by a reality that I seldom consider, the capacity of so many “normal” people to help others.

In particular, how do so many people find themselves able to accept challenges and responsibilities they never imagined they would face when their loved ones became increasing cognitively impaired. Why don’t they walk away (as I am often tempted to do from a so far less difficult situation)?

Individuals may answer, “I love my husband/ wife/ mother/ father/ sibling/ friend/ partner;” but that’s not it, not in any conventional sense. Of course I can’t speak for anyone else when I acknowledge that whatever emotional chemistry existed between Ralph and me before his diagnosis—whether the early passion or deep marital affinity—has definitely altered since his mind and identity have altered along the Alzheimer’s spectrum. I suspect the same kind of alteration has occurred between other caregivers and caregivees.

So, what specifically is the mix of loyalty, generosity, duty and sympathy/empathy that makes so many of the caregivers I’ve run across (who know who you are, Mary, Nancy, and all you others) tick?

I certainly don’t have an answer, but it is heartening to realize that when faced with the challenge, a large number of flawed, normal people are capable of being kinder and more caring than we expected of ourselves

A New Year’s Resolution: Self-Caregiving

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We all hear from and tell others how important it is to take of one self as a caregiver. Lately a Caregiver’s Bill Have Rights Has Been Circulating. The suggestions make a lot of sense, in particular to take care of myself; to recognize the limits of my endurance and strength; to maintain facets of my life that do not include Ralph; to allow myself to get angry or be depressed occasionally (that’s an easy one); to stop being manipulated into feeling guilty (that’s a hard one, no manipulation required); to accept affection, and appreciation; to protect my individuality.

But in talking to others in the trenches, I find I am not alone in feeling that, even with a Bill of Rights posted one my wall, it is not always clear what taking care of oneself means.

One example: Back when Ralph and I were first dealing with his diagnosis, I loved reading about Alzheimer’s Wife’s quick trip to Paris at https://alzheimerswife.wordpress.com/?s=paris, especially since I took a similar two day trip myself. Now my daughter is about to have her first baby and I will be traveling alone quite a bit to help out (I am dragging Ralph with me when the baby arrives but he’s made clear that he does not want to leave home more than absolutely necessary). I want to go and look forward to Nana-ing, but I find myself as worried about the arrangements for him as excited about the actual travel.

The ying and yang here is the question–Do I let myself relax into the slow down, or do I try to squeeze in some activity that ends up putting more pressure on me. My resolution for the new year is to work on finding the answer, for my sake, but also for Ralph’s because he is definitely happier when I am.

But you know how resolutions usually turn out.img_0154

(PS—Happy New Year…I’ll let you know if disinterest in grandfatherhood lasts when there is a real baby for Ralph to hold in his arms)

Ralph “Passes” the Test to Participate in Alzheimer’s Study

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The research nurse at Emory’s Brain Center called a week ago asking if we—Ralph and I because caregivers play an active role—would be interested in participating in a research study.  The nurse had already looked at Ralph’s chart and said she thought he’d be a good fit.

The study is  being conducted by the pharmaceutical company Merck  on a possible treatment to slow the progression of Alzheimer’s. As the Merck brochure says, “This study is designed to test the idea that inhibiting a specific enzyme, BACE, may slow or stop the progression of Alzheimer’s disease. The drug in this study, MK-8931, is a BACE inhibitor, which means it helps stop the BACE enzyme from producing amyloid beta peptides. Amyloid plaque deposits in the brain may be the underlying cause of Alzheimer’s disease. By inhibiting the actions of the BACE enzyme, it may in turn help stop the formation of those amyloid plaque deposits.”

In other words, the study hopes to find a way to slow down the build up of the plaque that is assumed to cause Alzheimer’s and that is evident in Ralph’s brain according to the spinal tap his doctor administered several years ago.

I glanced at Ralph, who was on the couch having his afternoon nap, and said yes, I thought we might like to participate. I was actually quite excited. In the past Ralph has not qualified for studies and drug trials like this because of his MRI problem—the bb pellet that has been lodged in his tongue since a shooting accident when he was eight-years-old not only uncomfortably heats up during the procedure but distorts results—but this particular study has dropped the MRI requirement.

The nurse immediately emailed the study’s descriptions and consent forms, which I read and explained to Ralph. And explained again.

“I hate taking pills.”/“You won’t even notice the extra pill.”

“How often will I have to go see the doctor?”/“Every other month.”

“What if I’m stuck with the placebo? It’ll be a waste of time?”/“But the study will give you the real pill afterwards, and in any case, the study will benefit others, like your kids who are at genetic risk.”

“Ok, it sounds good. But I hate taking pills.” The familiar loop repeated itself over and over, and each time he ended up agreeing to participate, if with tepid enthusiasm.

Three days later we were at Emory. (Evidently the study, which has already been going for a year or two, needed a few extra last-minute entries and the deadline got pushed up so we were a rush job.)

Ralph took two memory/cognitive tests which have qualified him although “passing the test” is not the term I’d use exactly, at least not for the second test in which the cut off number had to do with having too much memory. Ralph evidently “passed” with flying colors because his memory score was very low. I have to say when the nurse whispered the news to me, my heart sank a little.

Now we are waiting for Merck to look at the scores before scheduling some physical tests. If Ralph makes it through through those, he will begin taking the extra pill with his Namenda and Donepezil daily. There is a one-third chance or receiving a placebo, a one-third chance of receiving a lowish dosage of the medication, and a one-third chance of receiving a higher dosage. I will be expected to keep track of his progress in some form that has not yet been clarified—I warned the research nurse that I may be travelling some in January after my daughter gives birth, but she said that would not be a problem.

Once Ralph starts the pill, we will meet every two months with medical personnel, including his neurologist, a dermatologist and the research nurse, for the next two years. When the two years are up, if he’s been taking a placebo, Ralph will then receive the higher dosage of the actual medication; otherwise he will continue on the dosage he started with.

I see no downside (except, if I am honest, the extra effort required on my part) and plenty of pluses. Because we are entering the study late, there is plenty of knowledge about side effects—minor and rare. The frequent visits to Emory are a great excuse to get Ralph out of the house and into the world. Plus he will be receiving more detailed health check ups on a more frequent basis. We will no doubt have a better sense of where he is on the continuum than we do now.

And, although he says he doesn’t care, the idea of doing something useful for others, of being part of a cause larger than himself, will give him a sense of purpose; even at Emory the other day I saw the shift from anxiety (which may have caused his low memory score) to energetic good cheer as he interacted with staff.

And if the medication makes a noticeable difference in Ralph’s condition, well that would be great too. Fingers crossed.

“I LOVE YOU”–Easier Said Than Done For Caregivers of the Cognitively Impaired

I happened to read a post at the Alzheimer’s Reading Room call Three Little Words. I am sure the article’s author Bob DeMarco is right. I realize that saying “I love you” is a wonderful thing to say. I am sure DeMarco is also right that changing patterns of behavior as a caregiver is a good idea.

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But frankly I am not feeling it at the moment. I can hear you responding, that’s the point. If you say it, you will change how you are feeling and behaving. I get it intellectually and I don’t not love Ralph. But saying those words, and I do, sounds hollow. The truth, which is not always pretty, is that being together with him day in and day out is an emotional drain. Solitary even when we are in the same room and de-energizing because I tend to let myself drift into a slough of inaction with Ralph that I find both debilitating and anxiety-producing. (And yes, I know I should do things to make him more active, and I try, I really do.)

So, politically incorrect as this may be, I admit that I often put my own needs before Ralph’s these days. As I have said here before, we never had exactly an easy, or even happy marriage. I blame myself as much as him because I passively allowed him to be what he called “the captain” of the family, what the rest of us sometimes called the bully. My reasons were the usual complex mix of love, laziness, fear, and indecision.

Now, of course, Ralph is someone else altogether. As am I.

He has become the passive, gentle man who sat in the car today without complaining while I did grocery shopping on our way home from his aborted shrink appointment—for which he blamed not his therapist or me but himself for screwing up the dates and which despite the two hours spent driving in the car was not a complete waste of time because it gave his day a focus. The new jovial Ralph didn’t care that my run into Publix for milk turned into a full-fledged six-bag expedition.

Ten years ago, even if all I needed was a quick pint of milk, I would have driven him home and then driven back to the store we were passing on the way rather than argue over the practicality of adding an extra hour of driving to my life. For better or worse that weak-kneed version of Alice has disappeared. I have become a woman who tries to be diligent in her care but is seldom anything approaching affectionate.

Which brings me to this further shocking-to-me admission: Lately I have found myself transferring my affections from Ralph to another love object.

lola                I snuggle with Lola. I baby-talk to her the way I always made fun of other dog owners for doing. I encourage her to lie on the bed with me while I drink my morning coffee (especially since Ralph prefers to sit outside with his first cigarette). For the last month we have been taking classes together to make her more obedient. She now comes as soon as I call and stays sitting in “place” until I tell her otherwise. Along with obedience, she has become much more attached to me. All I do is look her way and she is by my side licking my ankle.

Ralph’s attachment comes with complications. Lola’s is much simpler (except that she eats my shoes). For me having Lola to love on has been a real help. And Ralph is not the least bit jealous.

Cognitive Impairment and Contentment, An Odd Couple

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Ralph and I have our best conversation while driving, the same way my kids and I did, and for the same reasons: we have each other’s undivided attention and we can’t escape.

So of course I was maneuvering my way through rush hour traffic the other day when he brought up his concern that his IQ has dropped seven points since what it was when he was a boy—this statistical tidbit from his first diagnostic testing lodged in his brain three years ago; he’s brought it up occasionally ever since but rarely so bluntly.

I responded that most people’s IQs probably drop as they get older, then added as an afterthought (how I tend to break bad news) that his memory loss has probably made his drop worse. He nodded. When I used the term Mild Cognitive Impairment, he flinched, but only slightly. (We don’t use the word Alzheimer’s aloud in our house.)

He brought up how well his medications Namenda and Donepezil have worked. He also said he was wasn’t worried that eventually they might stop working as well because his doctor had assured him that there will be new drugs in the process being discovered and he can take them when these stopped being effective—I don’t recall the doctor saying that exactly but I didn’t contradict him because, after all, who knows?

Then he took a puff of his e-cigarette and said, “Anyway, I’m content.”

“Did you say content?” I asked.

“Yes, I am very content these days.”

I could tell he meant what he was saying, not “fluffing the goods” as he likes to describe people whose stories he doesn’t believe. I felt glad for him, and definitely relieved.

But also, I have to admit, I was a bit jealous. Ok, a little resentful too.

Because I am not content with my life these days. It’s fine to be told what a good, caring wife I’ve become, but it’s kind of a backhanded compliment coming from friends with exciting careers going full steam ahead. Not that my career was ever that full of steam, but my ambitions have flagged. I find myself drifting along, adjusting my rhythm to Ralph’s, wondering if my own days of productivity are over along with his.

I’d rather blame the heat. Maybe once the temperature drops below ninety I’ll be full of focus and energy again, ready to care for Ralph and myself with equal vigor. I’m going to borrow from Ralph’s new playbook and assume the best….

Taxes + Alzheimer’s =Anxiety x Ten

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We were due a nice refund on our tax bill this year, but a few days ago a letter came from the IRS saying they would be “reviewing” our return before any payment would be sent or further action was taken.

I emailed my accountant, “Assume this is routine but thought you should know.” Less than a minute later she emailed me back, “This is not routine, but I’m not saying you have anything to worry about.”

Yikes. I have been through an audit and it was not fun.

The next day I received another letter, with a form to prove Ralph and I are really the ones who filed the return. So now I am trying to convince myself this review is part of the government’s crackdown on fraud returns and that the IRS doesn’t want to send our check to the wrong person.

But of course I am a nervous wreck.

I share this TMI (I know I know; talking about money is a turn off) because I cannot share it with Ralph.

And as I type the words “talking about money” I realize such talk is in fact one of the more intimate aspect of a marriage and that Ralph and I did a lot of such talk, weirdly enough, with gusto. Weirdly because money should have been a sticking point; he came from a working class family always on the brink of financial disaster while I was a pampered daughter of the bourgeoisie. He was a self-proclaimed capitalist, I was a righteous democratic socialist. But although as I’ve written here before, we argued about most things—childrearing, politics, how to spend our free time, where to live, what to eat, making friends, you name it and we argued—we seldom if ever argued over money. Money we discussed rationally.

We were in agreement that Ralph was the one with a talent for earning money, I was the one with patience for nuts and bolts bookkeeping. He went with his gut instinct. I played devil’s advocate. We could while away hours, days, TV seasons, analyzing a financial decision together. Even than nightmare audit was not a cause of tension; we were in it together, like partners in a school science project we discussed endlessly.

But I can’t talk about money issues with Ralph anymore. It’s not that he drives me crazy asking the same questions repeatedly (although he does) or that he might bring up a financial question at an inappropriate time (although the other night our dinner guest blanched when Ralph asked how much we had in the bank in front of her).

It’s that the anxiety of financial decision-making is more than Ralph can or wants to handle. He’s made it clear he doesn’t want to know too much but wants to feel secure. So I give him the basics and repeat them as often as necessary.

But knowing there is a difficult decision to make or a real problem (because I’ve foolishly spilled the beans) spikes his anxiety and the issue gets lodged like a loose widget in his cognitive gears. He can neither grasp it nor let it go.

There’s been no value in putting him through that pain. And selfishly, re-explaining a problem every time he returns to it has usually raised my own anxiety even higher than it is already. So I am keeping this new financial glitch to myself.

If this all sounds dark and self-pitying, there is an UPSIDE of sorts. As I teach myself how to think about money and compartmentalize that thinking, I see more clearly than ever that money, while necessary, is never the end in itself. As Ralph now jokes, as long as he has five bucks in his pocket and me on his arm, he’s happy.