Perfect do-nothing day.

“Do you want tea or coffee for ‘second breakfast’?” I asked my husband. “I’m fixing waffles.”

“What? Tea or coffee? What are you having? What are we having?”

“I’m having tea, we’re having waffles…and fruit, lots of fruit,” I told him.

“OK, tea then. What’s the occasion?” Peter asked.

“It’s Father’s Day.”

“You’re making me waffles?”

“Mmm-m,” I said, “it’s Father’s Day.”

“What can I do to help?”

“Nothing. It’s Father’s Day, do nothing until I tell you it’s ready.”

“I’m good at doing nothing,” he said.

“Yes, you are,” I said.

This day is perfect — a Crayola box of colors, balmy air, bright sun. I set the table outside, made a pot of tea, washed raspberries, blueberries and a peach, got out real butter and real maple syrup, and popped a whole package of frozen waffles into the toaster.

Peter ate as if he hadn’t had a meal in days. “I would like to have two birthdays every year…” he said, smacking his lips.

“This isn’t your birthday, it’s Father’s Day.”

“Not February? What is it then?

“June. It’s never warm like this in February,” I said.

“Well, I’d like two birthdays like this. This is good.”

“It’s still Father’s Day.”

“Are we doing anything special later?” He made a silly, little boy face.

“Yes, Leslie is taking you…and me…to a movie and dinner.”

“Wow, I’d like another birthday like this.”

IMG_3297

UnknownA card arrived from Carolynn yesterday. On the front, the unmistakeable silhouette of Mickey Mouse, Peter’s hero, and a “Hooray for Dad” message. He looked at it again and again, then put it next to his chair. When I looked at it this morning, I realized why he’s confused about today. The message says:

As far as dads go,
there’s not a more classic
character than you.
Hope your birthday’s
as special as you are.

Beneath that she wrote, I know you can’t remember all the cool things you did with Leslie and me…but we do! Happy Father’s Day!

Birthday? Father’s Day? Doesn’t matter. He’s loved by “his girls” and he’s happy.

DSC01438

 

Mickey Mouse webgrab/Pinterest

‘Consider yourself reminded.’

He stood at the kitchen table and puzzled over the red envelope I’d tucked inside the morning paper. “Is it my birthday?” he asked as he opened the card. It showed two goldfish smiling at each other from their side-by-side bowls. When he jumps into her bowl they live happily ever after, presumably.

Right month, wrong date. “No, Valentine’s Day,” I said.

“Oh, I didn’t know. Why didn’t you remind me?”

happy-dancing-red-heart-cartoon-isolated-on-white-background-valentine-s-day-greeting-three-dimensional-character-render_123656113I pointed to his message board where I’d put frolicking red hearts every day this past week. He shook his head and shrugged his apology. In fairness, the card isn’t a Valentine, strictly speaking. It’s teal and gold, not red and pink, and it’s a general purpose card about happiness. It could be a birthday card.

I picked it because of the goldfish. They’re known to have exceptionally short attention spans. Peter is my goldfish.

Leslie, on the other hand, delivered a red and pink, glitter-encrusted card that said, “Happy Valentine’s Day…consider yourself reminded.” She often reminds me to be as direct as possible with my husband, no complicated explanations, no double meanings. He had no trouble remembering  she’d brought a shiny red, heart-shaped box of chocolates. We each had one with our breakfast porridge.

I said it was OK that he didn’t remember the day. “You gave me the best present Wednesday…”

“I did? What was it?” He looked pleased with himself.

“…extra-special hugs after our dinner at India Garden.”

“Why’d I do that?”

“We hadn’t been there in a while. You cleaned your plate and mine, it tasted that good to you.”

“I don’t remember.”

“We’ll go again before too long. Maybe I’ll get more hugs…?” I batted my eyes.

He took the hint and hugged me. “Don’t get used to this,” he said, as I knew he would.

Maybe there’s something to be said for predictability.

IMG_2369

Chocolates for breakfast. What a way to start the day.

What lurks in the shadows of his mind, cont.

Same evening. Further attempts to talk in the noisy restaurant. Same puzzled expression on my husband’s face.

“What do you think it’ll be like fifty years from now?” he asked. He spread his hands and flapped them around.

“Here? This restaurant?”

“No-o. The world. Here. How many people will there be? Will they all fit?”

“Fit? I don’t know.” I said. He poses this sort of  question a lot.

“This is a small island you know…” he said.

“Island? What island?”

“England. Scotland. Ireland. Wales.” He nodded, proud of himself.

“Peter, where do you think we…”

He slapped his head. “Oh, silly me. We’re not there, we’re here.”

“Where? Where do you think we are?” I asked.

He squeezed his eyes shut and shook his head. “Virginia?” he said at last, then asked, “Did you know me before I got like this, before my mind went away?

“I did.” I said. “I remember. We met forty-two years ago. Your mind was fine back then.”

“Oh you, you remember everything,” he said.

“Someone has to.” I said. I knew what was coming.

He sighed. “What would you do without me? No, no, I mean…”

“What would you do without me?” I asked, as I always do.

He laughed. “That’s a good one, isn’t it?” He loves his own jokes.

 

 

What lurks in the shadows of his mind?

He sat across from me. The restaurant was very crowded, very noisy. Talking wasn’t possible, not really. But Peter kept trying to converse. I reminded him we seldom talk across our own dinner table, so it doesn’t matter if we don’t talk when we’re out.

“But, it’s different,” he said, “when we’re somewhere else.”

“I can’t hear a word you’re saying anyway,” I reminded him.

He nodded and sat back. He studied a spot on the wall behind my head. I watched his face. The V-shaped creases between his brows deepened, his left eye twitched, he shook his head slightly. He was far away.

“What are you thinking about?” I asked.

He shook his head again. “I’m trying to remember what it was like when I first came here.”

“To America?”

“Yes. Things have changed, but I can’t remember…”

“But that was in 1968! Nearly fifty years ago.”

He nodded.

“I’m going to have to learn to read your mind,” I said.

His eyes brightened. He smiled. “Well, if you do, tell me what you find in there.”

His remark was so apt we broke into laughter. The people at the next table must have wondered what was so funny. If they only knew.

 

Random thoughts, not remembered.

Peter has trouble expressing himself more and more frequently. The other evening he was trying to explain something, but his words were jumbled. I leaned closer hoping I could catch a few words and make sense of them. Instead, he smacked himself on the head and said, “My thoughts just won’t stay in one place long enough for me to remember what I’m trying to say.”

We both laughed, but that in itself was quite a mouthful for him these days.

APHASIA (uhfey-zhuh) noun, Pathology.
The loss of a previously held ability to speak or understand
spoken or written language, due to disease or injury of the brain.

It’s so difficult for those of us whose thoughts do stay in one place to imagine what it would be like to have some form of dementia. Peter falls back on his sense of humor to get by, and I borrow on that a lot. At times, though, it’s exhausting, probably as much for him as it is for me.

Screen Shot 2015-09-22 at 2.56.34 PM

©Dan Murphy cartoon, 6/18/95

Later Peter asked, “Did you know me before my mind got like this,” he waggled his hands above his head, “before my bike accident?”

“Of course I did, silly,” I answered. “That was in 1980. We met in 1974. Besides, your mind didn’t get ‘like this’ until a few years ago. ‘”

“How do you remember all that?”

“‘Elephant brain’,” I joked. “Important stuff. How could I forget?”

“I did,” he said sadly.

 

Header photo: web grab

Answer the phone already!

The home care manager with our health insurance company —  I’ll call her “K” — phones each month and asks for Peter. Since my husband will neither answer nor talk on the phone, I take her questions. Or if I’m busy, I’ll say the timing isn’t convenient. I hope she doesn’t get upset when I put her off. She sounds very sweet, and she is just doing her job.

Yesterday was different. When she called, I simply handed the phone to him. He glared at me. “Hello?” He was wary. “Oh, so far, so good,” he said, his stock answer these days when anyone asks how he is. When he answered “Six each morning,”  I knew she’d asked about his medications. “What do I take every day?” he stage-whispered to me. I was up to my elbows in sudsy water cleaning cupboards, so I yanked a drawer open and showed him the prescription bottles so he could read them off.

Next she asked about his exercise. “Yes, the dog still walks me every day, twice a day. Yes, nursing homes every week…no, oh no, not for me! Nobby visits the people who live there. No, they don’t want to see me,” he laughed.

She already knew all the particulars from talking to me, but I was glad I’d made him take the call because it forced him to talk. I constantly try to engage him, to draw him out. It’s exhausting.

“K” had a few more things up her sleeve. “Hm, let me ask the wife,” he said. I glared at him. He knows — he hasn’t forgotten this — that I HATE being called “the wife.”  “Do I have any doctor appointments?” he mouthed as if it was a secret. I told him the dates.

Screen Shot 2015-09-02 at 12.02.10 PMThen came the routine cognitive impairment questions: day of week, month, year? Peter thought she asked because she didn’t know, so he walked over to the dry erase board I update every morning. “No you don’t,” I yelped, quickly wiping the board clean with my finger. “She wants to know if you know!” He tried to get around the corner to the calendar, but I blocked that too. “You sneaky devil,” I said. Of course I laughed.

He chuckled and told her, “My wife [he didn’t say the wife this time] won’t let me look at the calendar, but I know it’s August…um, tenth? Year? I know it’s two-thousand-something…thirteen? Oh-h, twenty-fifteen! Already?”

I’m sure the conversation left her laughing. It did me.

 

Header photo: JodyWissing, Digital Fondue, (11/16/10)

 

 

Attention span of a goldfish.

Screen Shot 2015-08-19 at 3.16.32 PM

Ten symptoms of caregiver stress were listed in an Alzheimer’s Association newsletter with this caveat: Alzheimer’s caregivers frequently experience high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other dementia, but too much stress can be harmful to both of you.

 No kidding!

Screen Shot 2015-08-19 at 3.14.18 PM

In any given day I deal with several of these, and I’m sure other caregivers do the same:

  1. Denial – Early on, I was convinced that if I kept trying to force Peter to remember things, to eat right, to get out more he’d at least maintain his status quo.
  2. Anger – Screams, like geysers ready to erupt, lurk just below the surface of my “looking for laughs” demeanor. 
  3. Social withdrawal – Sometimes it takes too much effort do anything at all, much less be sociable.
  4. Anxiety – I’ve finally done what I should have done sooner: hired more help for Peter and for me. What a difference to have the house cleaned and tidied by a young lady who is energy personified, the garden maintained by a woman who knows first-hand what it’s like to be a caregiver, niggling tasks done by a handyman friend.
  5. Depression – Big mistake to think that I didn’t need anti-depressants. Hindsight and a meltdown proved me wrong.
  6. Exhaustion – I used to keep my house to a certain standard, not the same white-glove-test standard my mother used, but I kept the dust bunnies at bay, food in the fridge, cookie tin filled, laundry done. When I realized it had been weeks since I’d cleaned the bathroom or changed our sheets, I knew I needed more help. (see #4)
  7. Sleeplessness – Guilt wakes me in the wee hours, especially when I’ve crabbed at him for things he can’t help. Peter’s attention span is worse than a goldfish’s and he’ll ask the silliest things over and over. Within a few seconds he forgets I yelled and when I apologize he doesn’t know why.
  8. Irritability – No one has ever called me patient. Lately Peter has started reorganizing the pantry every few days, lining up jars and moving boxes so I can’t find anything. Most wives would be thrilled if their husbands undertook that task, but I’m an angry bumble bee.
  9. Lack of concentration  – I used to be so organized, so tidy, but no more. My personal spaces are in the same sorry state as my mind.
  10. Health problems – Many times I wonder if his dementia has rubbed off on me. Am I losing control too? Is it stress, or am I destined to be a statistic as well?
    I talked to my doctor. He did the basic tests and I passed. “Stress,” he said, “it’s stress. You’re doing fine, but take time for yourself, do what you can to alleviate stress.”

My mother always said, no matter how bad things may seem, there’s always someone who is worse off than you. I’m glad I’m not a goldfish.

Screen Shot 2015-08-19 at 3.24.59 PM

There’s always hope.

The Longest Day™ is a team event to raise funds and awareness for the Alzheimer’s Association. Held annually on the summer solstice, [June 21, 2015] the duration of this sunrise-to-sunset event symbolizes the challenging journey of those living with the disease and their caregivers. Carolynn Lyman of the Cancer Program is leading the ‘Poppy’s Hope’ team.
— Announcement in Faxton-St.Lukes Hospital newsletter, Utica, NY

I’d planned to organize an event for The Longest Day ™ this year, which coincidentally, is Father’s Day…tomorrow. But a couple of nasty bugbears, Stress and Anxiety, got in my way and totally discombobulated me for a time. It’s been said that the caregiver’s days are 36-hours long, and I believe it, even though Peter and I are “lucky” because he’s not in as bad a shape as some are…yet.

11160623_10205473130926745_8702219380988922005_o_3

‘Poppy,’ Carolynn, me, May 2015.

Carolynn picked up on the thread I’d dropped and started “Poppy’s Hope.” As it turned out, she didn’t have time to organize the golf tournament she’d dreamed up, so she went for a simple Facebook announcement and got a write-up in the hospital newsletter where she’s the Radiation Oncology Charge Nurse.  Though only up for a short time, her site has raised more than 535 dollars.

Screen shot 2015-01-20 at 4.22.16 PM

Purple streak.

Then, Leslie got in on the act too by posting a photo and a plea — “Wear purple for Peter” — to her Facebook page. I’m not an enthusiastic Facebooker, but I changed my profile and header photos to show the purple streak in my hair and my purple sage. Purple is the Alzheimer Association’s color.

Screen shot 2015-06-19 at 1.46.40 PM

Martin, left, Peter, me, Leslie, April 2014.


Every day is the longest day for Dementia sufferers. 
In the inaugeral year, 2012, The Longest Day™ events raised 236 thousand dollars and attracted more than 635 partcipants on 200 teams. Now in its third year, teams are as varied as the participants. Activities range widely, from playing contract bridge, quilting, and gardening, to golf, volleyball, walking, cycling, dancing, and fishing, to name a few.

Yesterday, I received a thank-you letter for the check I sent to the Alzheimer’s Association in lieu of organizing a team activity as I’d intended. A paragraph at the bottom reminded me of something I already knew: Alzheimer’s is the sixth leading cause of death in America and the only one among the top ten that can’t be prevented, cured or even slowed significantly. In Virginia alone, 130 thousand people, aged 65 and older have the disease. Worldwide, the number of Alzheimer’s and related dementia sufferers is a staggering 44 million!

Screen shot 2015-06-20 at 10.30.20 AM

The desire of sage is to render man immortal, according to a late medieval treatise. The sage plant has been praised highly throughout history for its power of longevity. Sage, L. salvia,  means to be in good health, to cure, to save.

If I thought it would help, I’d roll Peter in sage, sprinkle it on his pillow, and rub it behind his ears!

11165067_1122051104475978_1668361203311054294_o

My sage is a huge plant that I moved to Virginia from our garden in upstate New York 17 years ago.

 

Ten more years.

We set off for Charleston, West Virginia just before 9:00 a.m. Our destination was the US Customs and Immigration Office (USCIS). My English husband had to be photographed and fingerprinted so he’d be a legal permanent resident for another ten years.

Our little corner of Virginia is tucked into an indent in West Virginia’s border. The drive is a beautiful one that hugs the New River as it flows north, continuing to carve away at the Allegheny Mountains as it has done for millennia.

As happens so often these days, a thought lodged in Peter’s mind. Over and over, like a needle stuck on one of his 78 rpm records, he said, “I can’t imagine how they moved all these rocks and trees to make this road, can you?” I always try to answer his questions until I realize he’s in repeat — in my mind it’s “rePete” — mode. After about the fifth rePete I murmer the noncommittal and very useful British “mmm.”

Even with a stop for coffee, we arrived in Charleston two hours early. “Arriving at your destination. Turn left. Turn left here!” the GPS nagged frantically.  Silly thing failed acknowledge the median down the middle of the street. I had to drive another two blocks to make a U-turn in order to truly arrive.

The name on the building wasn’t the same as the information USCIS had furnished, so I parked and went inside to make sure we were in the right place. We wanted to have lunch before Peter’s two o’clock appointment.

Not only was it the right place, but the young man in charge offered to process Peter right then. He began to sign in and, as I often do, I tried to help. I was told politely that Peter was to do it himself. I whispered to the fellow that my husband has dementia and would need some prompting. He whispered back that he understood. “We’ll take care of him,” he said.

He handed Peter additional papers and a pencil. It was the very same form I’d completed on-line several weeks earlier to expedite the process! Peter worried about using a pencil instead of a pen, but I assured him that’s what they wanted.

“Hm, do you think his eyes are hazel,” the young man asked when Peter completed the paperwork. “I think they’re blue,” he said as he studied my husband’s eyes. Difficult for Peter to hold eye contact for so long, but he managed.

“Well, he’s always said ‘hazel.’ But he did start to write ‘gray’ for eyes and ‘hazel’ for hair color,” I said.

He laughed. “OK, hazel they are.”

Peter was processed quickly — no messy ink these days, nor film either — and we were on our way to lunch within minutes. At his scheduled appointment hour, we were almost halfway home.

The drive was punctuated with another question that had snagged in his brain. “How long before I have to do this again?”

“Ten years. They probably won’t even care by then,” I said. “And I certainly wouldn’t drive you to Charleston anyway!”

“Why not?” he asked.

“Can’t drive a wheelchair on the interstate,” I said, and we laughed.

Screen shot 2015-06-18 at 7.23.48 PM

National Park Service photo.

 

Header photo: New River, Virginia, Eric T.Gunther, Creative Commons Attribution.

A life sentence.

Periodically, our long term insurance company arranges for a nurse to come assess my husband — they want to  make sure he still has dementia, I guess. Today was the day. We were lucky to have Caroline again. Peter clicked with her before and again today.

The questions she asks are almost exactly the same as those his neurologist asks, and we were at her office yesterday. They want to know if he has any physical limitations, dizzy spells, or loss of strength, and if he can do household chores or handle bill-paying.

No, no, no, no, and no.

The hardest questions for most dementia patients are: can you name the day of the week, the month, the year, the season?

No, no, no, and no.

“Now I’ll ask you to remember three words,” Caroline said. Peter groaned and she smiled, but went on. “You’ll get one point for repeating the words correctly right away, and then again after you’ve either counted backwards from one hundred by sevens, or spelled the word “world” backwards. OK?” Peter nodded. “Your words are table, book, tree.”

“Table. Book. Tree,” he said. One point.

“Now, would you rather count backwards by sevens or spell “world” backwards?” she asked.

No hestitation. “D-L-R-O-W.”

“Great!” Caroline said. “Now, the very last part.” She handed him her clipboard and asked him to copy the multi-sided figures shown. After that she asked him to write a simple sentence.

“Sentence about what?” Peter asked.

“Anything at all,” she said. “A short sentence, but it has to make sense.”

Peter quickly copied the three figures, and after thinking a few seconds he wrote a sentence.

She looked at the clipboard. “Oh-h, that’s so sweet,” she said. She showed me his sentence: “I still LOVE my wife.”

Even though he didn’t score as well as he did the last time she was here, my unsentimental, undemonstrative husband got an A+ from me.

DSC09436