Just call me Lipton and pour the hot water.

Early in Peter’s the long journey, people warned me, Take care of yourself, take it easy, don’t wear yourself out. They were right, but I didn’t take their advice.

Several months ago, I added more hours to Peter’s two helpers’ schedules to give myself some time off. With those hours I run errands without worrying about getting home to Peter who can’t be on his own for more than a few minutes at a time. Really, he can’t be on his own for any time at all. And I’ve been able to schedule massages every other week, or go to the bookstore and sit with coffee and a new book for a whole hour.

I’ve wondered, how long can I continue doing this 24/7? What would happen to Peter if something catastropic happened to me?  He couldn’t live alone and he would make life miserable for himself and a caregiver without me as a buffer. Carolynn and Leslie have always said they’d take turns taking care of one or both of us. I know they mean it, and they would do it too, but at what cost to them? These are the kinds of questions that keep me awake nights.

I’ve known for months what I must do, but I played ostrich. I should have done my research, should have put my husband’s name on lists. The multiple choice answers to my question include Assisted Living? Nursing Home? Memory Care? Private Care Home? Additional Care at Home?

When it comes down to it, assisted living is what Peter has now. I assist. In any case, he would not qualify now — he is cognitively impaired, he wanders, and he’s close to late-stage Alzheimer’s.

Nursing homes conjure thoughts of elderly residents parked at the nurse’s station in wheelchairs. No thank you. He doesn’t need nursing care, he needs loving care.

Additional in-home care would likely expand quickly to ’round-the-clock. It may yet come to that, but that would be the last resort. My husband is uncomfortable, always has been, with too many people around, and I’m a loner too.

What about a “memory care” unit at a nursing home, I wondered? Six weeks ago, when I began to scribble thoughts for this post, I wrote, …no need yet for that level of care.

That was six weeks ago.

Since then, my emotions and any rational ideas I might have had have tossed in my head like wet blankets in a malfunctioning dryer — around and around, flip and flop, toss and turn.

After Peter’s accident four weeks ago (two previous posts) I understood what my friend Lourie meant — she has faced these questions too — when she said, “You’ll just know when it’s the right time…” to put him into care. Or when Karen, owner of a caregiving service, said, “Remember, you ‘have Alzheimer’s’ too. You have to choose what is best for Pete, and for yourself.” And I took comfort from something gerontology professor Dr. Elaine Eshbaugh wrote in a blog, “You are just a person — doing the best you can under circumstances that aren’t great. And you’re not alone.”  Others I begged answers from had similar thoughts — don’t feel guilty and don’t let anyone tell you what to do unless they’ve walked in your shoes.

So, after Peter fell on his face, literally, I was smacked in the face figuratively. I had not done my homework and I was not prepared  for the awful days that followed. Somehow, in the swirl of emotions, I thought of respite care, something I hadn’t even considered before. Leslie went with me to visit likely facilities. Respite seemed like the right answer for the short term. Rescue for both of us. Peter would get good care in a more pleasant setting than I would have imagined, and I could put my crumbled self back together again.

I started the process, I talked to family and friends and all agreed it was a good idea. They knew Peter’s state was precarious after his accident, and how exhausted I was. Then, then, Peter’s awful journey changed course. He morphed into the person he was several years ago, before his brain was ravaged by rampant plaques and neuro-tangles

Again my own brain tumbled with conflicting thoughts, but after further counsel from friends, I put respite care on hold. Our life is now paused in that blissful place where romance first bloomed.

A delay was the right thing to do.

“A woman is like a tea bag — you can’t tell how strong she is
until you put her 
in hot water.”  Eleanor Roosevelt

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am


‘I believe that tomorrow is another day & I believe in miracles.

Three weeks ago my husband’s already steep downward trajectory propelled him to a crash-landing in a muddy ditch — “The second worst day of  my life so far” The ten days following were worse, but then darned if a miracle didn’t happen.

Cruel disease that Alzheimer’s is, I know this upward swing won’t last, but I’ll enjoy it while it does. Peter can’t put his feelings into words,  but I see the twinkle in his eyes again.

Several things happened to precipitate the miracle…series of miracles really. First, ten days ago, his feet slipped out from under him while he was trying to get dressed in his closet. That doesn’t sound like a good thing, but it was.

Until that day, he’d been barricading himself in the closet. Not by locking the door, rather by pulling out a drawer in the built-in dresser, thus jamming the door. He did not want me to help him get dressed no matter how long it took him. “What if you had a heart attack or a stroke or something? I wouldn’t be able to help.” I said. He snarled. Later I removed the drawers and hid them.

But that day, with no barricade and him flat on the floor, I was able to shove my way in by using the door to push him out of the way. I couldn’t lift him though, and he couldn’t get up by himself. I grabbed a towel from the laundry basket, Peter shifted his bum onto it, and I pulled him across the floor to a chair. He managed by himself then.

When he fell, I think he jarred something in his brain back into place. After we both rested for a bit, I told him he smelled like road kill on a July day, and he needed to shower. Once clean — I did wait outside the door to help if need be — he came downstairs hungry for the first time in ten days. He ate his usual big lunch and was hungry again two hours later. He was actually quite chipper!

That evening, Carolynn and Bill arrived to help us for a week and, not incidentally, celebrate Peter’s eightieth birthday. He perked up when they arrived, though he grumbled that I hadn’t told him about their visit.

From that day to this, his “Parkinson’s shuffle” ceased and he began to walk almost normally. He goes up and down the stairs easily, still holding the bannister, but not with the two-handed white-knuckle grip like before. Once again, his steely determination prevailed, and his clenched-teeth warnings, Leave-me-alone. I-can-do-it-myself, were validated.

There were a lot of laughs at his new normal, but none more so than his telling Carolynn and Bill over and over about the times he hitchhiked in big trucks to get up and down I-81 or back to college in England. The story varied as often as he told it.

He was surprised by his birthday, didn’t realize he’d reached 80, nor that the pile of presents were for him. He kept us in stitches while he opened them. The family gave him thoughtful things he enjoys and cards he looks at every day. I, ever practical, told him the accessible toilet Bill and Martin installed was a present from me. He was pleased. In addition to a selection of tiny  French pastries in lieu of carrot cake which he no longer likes, I gave him a fake cactus similar to the type he raised years ago. He thinks it’s real and waters it several times a day. If it were real, it would have drowned by now. Makes me a laugh to see the puddle and gives him something to do. I don’t remind him it’s plastic.

Most miraculous of all, he calls me “Luv” again the way he used to do. He gives me hugs and kisses, about 23 so far, and murmurs, “What would I do without you?”

I’ve thought about that, but I don’t dwell on the possible answers. For now, I’ll hang onto an Audrey Hepburn quote for as long as I can: “I believe that tomorrow is another day & I believe in miracles.”

Header: The fake cactus looks as real as the real begonia nearby.

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am



A last hurrah?

“Where have you been?” Peter asked. It was the wee hours of Monday morning and he was just getting into bed.

“Los Angeles…I just got back,” I said. “The plane was late.”

“Why were you there?”

“Columnists’ conference, remember? I marked it on the big calendar downstairs.”

“Hm-m,” he muttered and, lights out, he was asleep. So much for a welcome home hurrah.

Leslie had been in charge my four days away. She (and Carolynn, too) can handle Peter, often more easily than I can. She’d been asleep on the couch and went home as soon as I came in.

When Peter came downstairs next morning, I said, “Gooood morning,” as I do every day.

He affected his fake startled look, as he always does, and said, “Oh, hello…I thought you were away.”

“I came back…two o’clock this morning,”

“Where were you?”

“L.A.” I said, pointing to the calendar on the kitchen counter.

“Mm-m, that was a long time ago. I don’t remember.” The previous Thursday was ancient history in Peter’s mind

I didn’t expect him to remember, but still it rankled. “It was one of the most exciting things I’ve ever done,” I said. I wanted to tell him about it, but showed him photos on my phone instead.

“I’m sorry, there’s just nothing in my head anymore.” He sighed and knocked on his forehead with his fist.

“But it doesn’t sound hollow,” I said and we laughed.

I didn’t even try to tell him that I’d won the number two spot in my category. Or that the award came with two hundred dollars or that I sat next to my idol Leonard Pitts at dinner.

IMG_3374When I showed him this photo of Los Angeles’ infamous rush hour traffic, he asked, “Who would want to face that every day?”

“Not me,” I said. “Coming downstairs is as far as I want to travel to go to work.”


UnknownNational Society of Newspaper Columnists 2016 contest winner —
online, blog, & monthly under 100,000 unique visitors category

Bragging, right?

At the urging of my friend Kathie, I submitted three posts from this blog to the National Society of Newspaper Columnists Contest, Online Blog, Multimedia Under 100,000 Unique Visitors Category. Whoo, a categorical mouthful!

UnknownIn a May 6 email from Cathy Turney, NSNC Column Contest Chair, she informed me that I was one of three finalists in that category.

My happy dance shook the rafters. There might even be a hairline crack in the foundation. I so wanted to tell Peter about it, babble on and on the way I used to do when some small triumph came my way.

But I can’t, not anymore. I’ve told him about this blog, as well as my other one, “Wherever you go, there you are.” He isn’t the least bit curious. I’ve tried to encourage him to read some posts, but he simply will not. Maybe he cannot. I’m not at all sure he can read very well anymore. He can’t concentrate long enough to remember the plot, and he often  asks me the meaning of words. Typical of Peter, he jokes about it, deliberately mispronouncing a word he doesn’t recognize.

There are days when I think he’d enjoy some of my shorter posts because the blog centers on him. He likes to know he’s noticed, a star in his own galaxy. Yet there are other days, too many lately, when knowing that I write about him would infuriate him. He’d retreat to what I’ve always called his “Mt. Rushmore mode.” Stoney. Silent.

So, except for an email in all caps to Carolynn, Leslie and a few others, I’ve been mum. Until now. Maybe I’ve earned bragging rights.

I wish I could share my excitement with my husband and that he could understand my thrill.

I with I had no reason to write this blog. Dementia really isn’t funny.

Screen Shot 2016-05-10 at 5.26.17 PM

“Dementia isn’t funny” NSNC contest entries:
“Magic pills? Wonder drugs? Snake oil?”
“Chips, a food group unto itself”
“It’s the little things.”