A Promise Broken Because of The Effects of Dementia

Earlier in the year, before dementia got the best of Romeo, we decided that this is the year we would see Paul McCartney in concert. I promised Romeo that we would go -- no matter what. At the time, little did I know that "no matter what" was to become unthinkable, utterly un-do-able.

When I heard that Paul would be in Denver on July 17, I went online immediately and bought two tickets, knowing that Romeo could not come. But before that, I struggled -- do I get tickets, do I go to see Paul without Romeo? And what would Romeo say when I told him, how would he feel? Do I not go at all?

Perhaps another woman would not have gone. I chose to go. After all, it's PAUL McCARTNEY. I've waited 46 years for this, and Paul isn't getting any younger either. So of course I was going to go. It was an easy decision, but it wasn't so easy to reconcile, to make peace with the fact that Romeo couldn't come, that I had to break a promise I'd made to him, that we couldn't be together for the concert.

Why couldn't Romeo come? What exactly is it about this concert, or any such event, that Romeo wouldn't enjoy? The answer, simply, is: all of it. Every piece, every detail, about getting him there, to being there, and getting him back afterward, would have been a major production.

Perhaps the easiest details to arrange, but the most costly, would have been transportation. It is impossible to get Romeo into a car (or SUV, in our case). We would have had to hire a van equipped to transport an individual in a wheelchair. The van would have to have the proper belts, straps, and fasteners to secure Romeo sitting in his wheelchair. The cost would have been beyond my budget.

Next in the easy detail department: we would have had to purchase handicapped seating for the concert. Easy enough, except they were sold out when I checked.

Finally, the main reason why I thought it best that Romeo not accompany me to the concert is perhaps the most hidden to those who have never been caregivers, never been around someone with dementia. Simply, it is that Romeo (and many people with dementia) would not have been able to tolerate the noise. It was going to be loud. Noise is bothersome to him, where it never used to be. He often doesn't want to listen to classical music -- his favorite, or what was his favorite. At Paul's concert, even with everyone in the stadium singing along with him, we could still hear Paul loud and clear. It was high energy, high noise, the entire three hours. Romeo would not have made it through 30 minutes of it, let alone 10 minutes.

For the past two years or so, Romeo hasn't done well attending events. He usually doesn't make it through any movies we go to (we stopped going). Last summer, we had to leave during the intermission of a performance of Shakespeare's The Two Gentlemen of Verona. This past spring, Romeo could hardly tolerate something as low-key as sipping tea in a coffee shop with conversation and overhead classical music for 40 minutes. No, as much as he would have wanted, he could not have made it through Paul McCartney's concert. I was satisfied with that decision.

But after the relatively easy decision, I did not anticipate what came up next. Huge sadness and near-bottomless grief. It weighed me down for days. Romeo couldn't come to the concert with me. I cried, I fretted, I felt guilty, I cried some more. And then it was gone. It had passed, and I was okay.

Earlier this year, in the spring, when the weather was nice, I took walks alone in places where Romeo and I would always walk together. It felt odd to be there without him, but I never cried or worried or felt guilty. This walk, I knew, would be just one of many without him. It foreshadowed other routines and other occasions and events that I would be doing or attending without Romeo. But this Paul McCartney concert...it involved me breaking a promise to Romeo. Something I'd never done before. And hoped I would never have to do again.

So what did Romeo think of all this? What were Romeo's feelings toward not being able to see Paul McCartney? For all the crying and fretting and worrying and guilt that I felt, it was a non-event for Romeo. It didn't register on his emotional scale whatsoever. He had forgotten we had talked about going to see Paul this year. He had forgotten my promise that we would see him this year, no matter what. And the day after the concert, he had forgotten that I had gone to it until I reminded him. I talked about it a little, and Romeo listened intently, smiling. He was happy that I had enjoyed myself. And after a minute or two, he asked me if there was any more chocolate in his room. Ahhh, how he makes me smile.

These songs are for my love, my amazing Romeo:

Inbox Q and A: What Does Romeo Do All Day in the Nursing Home?

From time to time, Romeo and I receive questions from family, friends, acquaintances, that are good to answer on this blog because: (1) a number of people ask the same question, and it's easier for us to give one answer; and (2) it's simply good, educational material about dementia. Our intention is to open up the world of dementia to you, to help you understand what you would only know if you spent a few days with us, if you were to actually see and experience what it's like living with dementia.

The question we'll answer today is:

What does Romeo do all day?

Good question. Although dementia limits him, he feels that his days go quickly. First, there are the routines: the nursing assistants get him up and going somewhere between 6:30 and 7:00am. Breakfast is at 8:10am, lunch at 12:10pm, and dinner at 6:10pm.

Throughout every day and evening at the nursing home there are a variety of activities Romeo can participate in if he wishes. He does not choose to participate in much, and I see where he's coming from. Most of the residents are 20 years older than he is, so the activities are geared toward them. But there are exercise classes that he likes to go to, drum circles, musical performances, and some games.

In addition, one of the recreational coordinators comes by every day or two and chats with Romeo and wheels him around -- outside if the weather is nice -- and will also get him up and walking. Twice a week, Romeo receives a maintenance type of physical therapy, where he is walked until he tires. Sometimes it's only 50 feet, sometimes 500. I also get him up and walking during my daily visits.

Visitors are few and far between for him; most people don't like nursing homes, I'm guessing. But I am there every day, usually for four to six hours. Sometimes less, sometimes more. Each day he asks that I bring him steamed soy milk and an oatmeal raisin cookie. I read aloud to him, and we discuss what we've read. And we talk...about everything, as we have done since we first met. Occasionally he wants to hear some classical music, so I'll pop in a CD and we'll listen to Mozart or Bach for a bit. He also enjoys The Essential Snatam Kaur: Sacred Chants for Healing. And we have watched two DVDs: Deva Premal and Miten in Concert, and Earth Drum Visions featuring the music of David and Steve Gordon.

As a young adult, Romeo taught Transcendental Meditation (TM) and has since been a lifelong meditator. Until now, that is. He feels that he doesn't need to meditate anymore because there's nothing to meditate on. He meditated daily until four or five months ago. And the reason why he doesn't meditate anymore? He says that he has come to the end of the road and feels that he doesn't need to meditate anymore. His mind is blank, and he likes to hang out with his blank mind. Romeo believes that during the time when he has no thoughts he connects with the Universe, the Divine, Existence, God, the Presence, whatever you want to call it. He says it's a peaceful place to be and the time passes quickly.

Even so, he still has occasional thoughts. He often wonders what happened to various friends. He wonders what he is doing living in a nursing home. Thinking about this is depressing to him, so at that point he goes to sleep. He also says that he thinks about me, his Juliet, frequently. He wishes we were together more. He misses going out to tea, driving to the mountains, taking long walks, being together every minute of every day.

And that is a typical day for my Romeo.

The Arrows and Daggers and Golf Balls of Caregiving

Dementia, in addition to affecting memory, can often cause unusual behaviors. Romeo experiences this from time to time. Since he's been living in the nursing home, he has taken on a behavior not like him. I know it's dementia speaking and acting, that it's not him. Still, it's difficult.

Nearly every day in a week, Romeo will mentally "attack" me with arrows and daggers. It always happens at the top of my first visit of the day (since I live so close to the nursing home, I often split visits during the day). I never know who I will be greeted by on any given day -- my sweet Romeo, or the attacking marauder Romeo.

The sweet Romeo will smile when I first walk in his room. He'll hold out his hand for me to take, and we'll sit quietly for a few minutes. The attacking Romeo is quite different. He will stare at me with anger in his eyes, propelling the poisoned arrows and daggers launched toward me. When this happens, my heart literally sinks to my stomach, and I close my eyes for a moment and direct my breathing to my gut, where the emotional pain (his emotional pain or mine?) settles.

I sit and listen to his list of complaints. Some I can act on, most of them not. They are products of his dementia, misconceptions on his part, and logic is a language he no longer speaks or understands.

So I take his arrows and daggers, dissolve them, and get on with the day. I often feel like a golf ball hitting a steel plate at high speed:

The Long-Term Care Truth About Flying

"I wouldn't fly with you," said Romeo.

"What?"

"If you were piloting an airplane, I wouldn't fly with you."

We were reading about small planes, about how a non-pilot wife landed a plane when her pilot husband became incapacitated. A flight instructor talked her down safely, giving her instructions and encouragement the entire time.

"Romeo, if I had a pilot's license, you wouldn't fly with me?"

"No."

"Why not? I think I'd be an awesome pilot."

Romeo rolls his eyes and turns away.

"I never told you this because it never came up," I said. "But at one point in my life I wanted to learn how to fly."

"What happened?"

"Never got around to it. Just like I never got around to learning how to fence. At least not yet."

"Fence?"

"Yep, fencing. You know -- beat, lunge, perry. All for one and one for all."

"Oh."

"So why wouldn't you fly with me? I'm an excellent driver."

"Driving isn't flying."

"Well, no," I agreed.

"In an airplane there's no road."

It took me a few minutes to stop laughing, and when I did: "That should make it easier to fly."

"No, no, no." Romeo was frustrated. He wasn't able to articulate his thoughts. I still don't know why he wouldn't fly with me. Perhaps if I bring up the subject in a few days he won't remember the conversation and we can start again. Maybe he'll be able to tell me then. Maybe then he'll be able to find the words. But more likely, not. Ahhh, this is dementia.

Decluttering the Clutter of Memory Loss

Romeo says that because of his dementia, the things he uses routinely must be in plain sight. This includes toiletries. The counter by his bathroom sink is cluttered with numerous packets of dental floss, three different types of soap, an assortment of tubes of various lotions and creams, and three different toothbrushes, to name only a few examples.

What Romeo doesn't know (well, he does now) is that periodically, as the number of his lotions and potions grew, as they began to take over my half of the bathroom counter, I put most of them away in his glass-fronted cabinet. And why not? He would ask, "Have you seen my first aid cream?" I would lift it off of the counter and hand it to him. He was surprised, of course, to see that although it was right in front of him, he couldn't see it. So much for his argument that he needs things in front of him to find them.

Now that Romeo has been living away from home for two months, I am beginning to declutter his clutter. Plugging away at making life here simpler for me. There is a long way to go, but I did not begin with the bathroom.

The first job I tackled is the top of Romeo's dresser. This is a relatively easy task. Put books on the bookshelves. The list of titles tears at my heart:

• Evolve your brain: the science of changing your mind, by Joe Dispenza, D.C.
  

• Making a good brain great: the Amen Clinic program for achieving and sustaining optimal mental performance, by Daniel G. Amen, M.D.

• A better brain at any age: the holistic way to improve your memory, reduce stress, and sharpen your wits, by Sondra Kornblatt

• The brain trust program: a scientifically based three-part plan to: improve memory, elevate mood, enhance attention, alleviate migraine and menopausal symptoms, boost mental energy, by Larry McCleary, M.D.

Of course, nothing Romeo tried worked. As good as these books may be, the information in them is for people with normal-functioning brains, not for people with dementia. Romeo never understood that. Neither did a number of his friends and acquaintances who recommended the books. Reading the books and faithfully carrying out the exercises did not result in a better brain for Romeo, and his disappointment grew with each book he read, each exercise he tried.

The next step in decluttering Romeo's dresser top is putting away the CDs. Just a handful, really: Beethoven, Bach, Amici, Deva Premal, and a self-hypnosis exercise on dressing recorded several months ago by a friend especially for Romeo. Although Romeo saw no improvement in his ability to dress himself, I certainly did. I encouraged him to play it often.

Next to come off the dresser is a stack of handwritten notes and a notebook: random thoughts, instructions for writing memoirs, notes from the Brian Swimme discussion group we participated in for a number of years. These I move into the study, place on a bookshelf, waiting to be better organized once I start the detailed decluttering work in the study.

I find miscellaneous items: a magnifying glass that I put in his desk drawer, a flashlight that I put in the drawer of my nightstand, pens and paperclips and paperweights that go in the study, a purple speckled round box I painted for him a year and a half ago when I took my grandsons to a paint your own pottery place. There are framed photos of Romeo's spiritual teacher, Osho. Romeo does not want them on his nightstand in his room in the nursing home, so I put them in the study for now. Later I will have to decide -- we will decide together, when that makes sense -- what to do with his bric-a-brac in the study, what to do with his pens and books and bookmarks, the elephant statue, his tapes, photographs. I suspect that much of it will end up in boxes in the storage room. But for now, I want to see all of it in front of me. Romeo is still living, although we are not living together.

Lastly, a couple more things on Romeo's dresser: two decorative wooden birdhouses that he painted and decorated last spring when he attended an adult day care program. These I put in a place of honor in the china cabinet we use as a dresser in our bedroom, my bedroom now. And while I'm at it, I gently fold a few sweaters he haphazardly stuffed onto its glass shelves last spring. I'll take them to him in the autumn, when the air turns crisp and cool.

Ah, on the floor is the humidifier Romeo liked to run during the winter. Although there is a humidifier on the furnace, Romeo liked a bit more humidity. I don't need it, so I stash the humidifier in the storage room.

I survey my work. The dresser top is now clear, except for a lamp. Before Romeo moved in with me, there was no dresser there at all. Instead, a bistro table and two chairs with that same lamp. I consider moving the dresser out and bringing in the bistro table and chairs again. But no, the dresser will stay where it is. I need it for Romeo's out-of-season clothes. It stays.

Then I turn around and see on the narrow wall behind me -- the wall that signals the bump-out that houses Romeo's dresser -- I see Romeo's dressing gowns hanging on the hooks I installed on that wall. (An aside: this is the only evidence in my speech that I am married to a British gentleman. I now say dressing gown instead of robe.) He could never find his dressing gowns in the closet, so I consented to the hooks.

But now, I can't think of moving the dressing gowns, of removing the hooks. Too tired, too drained to deal with that now. Later, tomorrow, next week, whenever, I will put the dressing gowns in the closet. I will take the hooks down, spackle the holes, and finish the job with touch-up paint. But not now. Now I will sit silently for a while. Now, with the clutter gone, there is room, there is space for my sadness.