the part of you that wants to sleep

When I called Mom's room at noon, I wasn't surprised that she was still in bed but I was surprised that none of the care aids had been in to get her up for lunch (or, in her case, the first meal of the day). Or at least that's what she said. If that's to be believed, given her current memory. But I said I'd call her back in 15 minutes, thinking that a care person would come in by then.

I was wrong.

I told her, "Mom, press the button on the thing around your neck." Sometimes I don't recall the name "pendant." It's no piece of jewelry, that I can tell you for sure.

Well, today she was able to press it and while it was blinking we had at least lots of time to talk. You know that having conversations with somebody with dementia can be challenging. 

"I'm tired," said she.

"I know," said I. 

"I just want to go back to sleep," said she.  

"Well, you can go back to sleep after lunch. It's not a very busy day. I don't have anything scheduled for you," said I. I know to say this, to promise her she can go back to sleep, which she can. I'd rather she do an activity, or sit outside in the sun, but I know to promise her the thing that will give her comfort. The thing she wants to hear. Then something surprising happened.

"I'm afraid," said she.  Now I start to think maybe I should have the facility psychiatrist come in and talk with her because she's talking about emotions! And she's in touch with them. This can be a good beginning.

"Afraid of what, Mom?"

"I just want to sleep." This is not such a stupid statement. This is a moment of self-awareness. For a person with dementia to be so self aware and to be able to share that, to bring me in to this thinking, is a moment I'm cherishing.  "I'm afraid that I"m going to be like this."

"Like what, Mom?"

"To be like this, and I'm not going to be more active." Suddenly we are in another zone of consciousness.  This word "active" is not a word I've heard her say in a long very long time.

"You me to be more active, and do things? Like what, Mom?" Am I pushing too much? Too fast? How far can I take this? Will I get another chance to have this conversation again?

She doesn't answer. The pendant is still blinking and the care person has not come in. I know that lunch will be over soon but I want this conversation to continue.

"So part of you wants to sleep and part of you wants to be active. Which one would you like to have right now?"

"I want to be active but the one that wants to sleep is stronger."

It is strong. And it's her biology at this moment. And while this moment is intimate, I think that after lunch the part of her that wants to sleep will win.

She may not remember this conversation but it made my day.

 

Today Is Not That Day

If you don't know what a rollator is, you are either not old enough yet or you're probably not a caretaker. I fit into the latter group. Those who are also caretakers understand just what a challenge it is.  In my case, we do it by phone. We live 300 miles apart.

 

I think I've got it down to a science now, even though all science pays big respect to the notion of randomness. And there are lots of things that even science cannot predict.

At least I know to phone my mom between noon and 12:30 every day- sometimes even in the middle of a doctor's appointment - because that's when she's waking up. Not from her nap but from her night's sleep. Getting her up and to eat is a delicate maneuver.

"Why is she sleeping so much?" people ask. The easy answer is "That's her disease." But I"m not sure really what disease she has, other than one symptom is she sleeps an awful lot. Whatever disease she has, this is what it does.

I'm not sure what disease she has because the doctors say it's one thing but none of us believe, even 4 years later, that that's what she really has.  Like Alzheimer's.  They don't really know if you have it until you die and they look at your brain and even the they don't really know because many people with a so-called "Alzheimer's Brain" are perfectly fine. But she does have a disease.

The other phone call is, on most days, between 3:30 and 4pm and that call also is a wake-up call, after she has gone back to sleep after lunch. This call is to get her to get up, stand up, walk down the hall.

"I'm comfortable here in bed," she says. "Why can't I just stay here under the covers?"

Then I have some sort of answer. I've been practicing this answer for a long time. "Well, you need to stand up straight, it's better for your back"

"I'm tired." I've practiced this too. "Then you need to walk some and get your blood circulating and get some oxygen to your brain." 

"But you told me I could sleep until dinner."

"No, Mom, I didn't. Somebody else might have said that but I didn't.  I said, "I'll phone you between three thirty and four and you'll take a walk and you said "okay."" They tell us to go along with people who don't remember things like that. I've found that telling her somebody else may have promised her that she could stay in bed until dinner works.

And back and forth we go.  Doing this for close to a year now, I know to say "Take the walk and then you can go back to sleep until dinner."  The promise of being able to go back to sleep is often enough to get her willing to walk down the hall and back.

Today we had version B of this. As she was getting up and out of bed and reaching for her rollator, she said, "I'd rather be dead than get up and walk down the hall." She wasn't kidding, either. We don't take this lightly. I know life is difficult for her.Wanting to live is difficult for her. But this is no time to focus on this truth.

"Well, Mom, I don't think today's going to be that day." She doesn't bite back.

 "Are you ready? Okay, let's go!" 
 
I've gotten out of that one, for now.

Presidential Primaries Among the Amyloid Plaques and Tangles of Alzheimer's

 

In the tumult and the excitement of the decades of the '60s and the '70's, my dad insisted that I go to college, and ranted and raved if I indicated any level of disinterest or interest in attending a college that wasn't on his list. Although I would be the first child, and daughter, to attend college, the word "feminism" was never spoken in our home. I was expected to attend college but, ironically, the notion of women's rights was taboo.

My mom knew when to keep quiet so as not to raise her husband's hackles, and quiet she continued to keep for years when he had his temper tantrums -- even for years after he, the self-appointed chief of our family's Thought Police, walked out. It took another 45 years after Dad left home for my parents to be officially divorced, allowing Mom to finally sell the family home and discard as much of the old (emotional as well as physically moldy) baggage as possible, and move into the present. The hallelujah celebration was muted, however. Just a few months earlier, signs of Alzheimer's had appeared. Mom now finally free from one form of oppression, another toxic and unknown form took its place. I wondered about lots of things.

Among all the millions of little details of moving an elderly parent from one home to another, and one year later to yet another, is the change of address for the Bureau of Motor Vehicles. And in that process is yet another question:

If you are a registered voter in PA and are changing your drivers license or photo ID address, would you like us to notify your county voter registration office of this change? Yes or No?

YES! Sometime later, she received her official new voter registration card, which I put in a safe place.

In a political vacuum, Mom and I would talk about whether she was registered as a Republican or as a Democrat. The ghost of the conversation was always about what party her ex-husband, my father, chief of the now former Thought Police, thought was best. Pennsylvania had a long history of being a Republican state. Meanwhile, her memory and cognitive functioning were in declinem as was her ease with walking.

And then came Hillary.

Primary after primary I heard my mom talk about Hillary. Mom wasn't interested in watching the debates on TV. If the content of the debates was lacking in substance or difficult to follow an argument or a position, the brain disease of Alzheimer's made it even more impossible for her to follow the candidates. No matter. My mom knew whom she wanted to vote for. Hillary. She also knew whom she hated. Trump.

"I want to throw things at the TV when I see him."

The Pennsylvania primary was months off but meanwhile we would just have to figure out how to get her to the polls. The senior community would be running buses to the polling site. My biggest fear was that I would determine she had registered as a Republican and would be unable to vote for Hillary in the primaries. When I had time one day, I checked that out... Nope, Democrat. My other fear was that when she got into the voting booth, she would forget whom she wanted to vote for, or wouldn't be able to figure out how to actually vote. Or maybe she just wouldn't want to get up and out of bed on that day.

The Pennsylvania primary was one of the last. THIS POST WAS ORIGINALLY POSTED on youreadermejane.com The afternoon before the primary, I phoned her to check in. "Hi, Mom."

In the most casual voice, she answered: "I'm sitting on the floor. I just fell. I used my cane to pull the phone toward me. My legs are off to one side. "

Okay, I remind myself to not panic. Among all the other thoughts encircling what remained of my brain was: Had she broken a bone? Had she fractured the hip that had been replaced years earlier? Did I need to figure out how to get her to the hospital for evaluation and x-rays?

"Mom, I'm going to call the front desk but they might want you to go to the hospital for x-rays. Would you be willing to go?"

"I'd rather not."

I phoned the front desk, who got security there right away and a nurse from the clinic to her apartment to assist. The nurse determined that it was most likely a groin pull. That was a relief! Still, the nurse asked me to make a judgement call on whether to get her to the hospital for x-rays, just to be certain. I hate making judgement calls like that. Just to be certain.

The rest of the evening, her aid made a special trip in offer assistance, as did my mom's sister, with ice, food, anti-inflammatories, over-the-counter painkillers, and love and comfort. Mom's sister brought the supplies of a democracy: a paper sample ballot for a serious training session. She had my mother practice picking the candidates of her choice. Also of concern was now getting my mom to the bus to the polls the next day. Mom already was walking slower than a sloth even with the assistance of her walker and making more and more stops along the way to catch her breath. How would she ever make it to the Main Building where the bus was picking everybody up?

The following day, my mom's aid showed up, got Mom dressed, and fed, iced her knees, groin area, and hip area, applied Voltaren Gel, and had her take more over-the-counter painkillers and anti-inflammatories. She stayed a little longer, long enough to get my mom into her car and drive her to where the bus would pick her up for the 4pm run to the polls.

At 3:35 I phoned my mom. "I'm sitting outside. The breeze is blowing and it's lovely here. I'd rather be here than inside." So far so good. Her sister would be along shortly and the two would take the bus ride together to the polls. Mom was relaxed and calm. I was not. "This is so exciting, Mom!"

"What's the big deal" my mom asked. "I've voted before."

Later that night I phoned my mom.

Through all the amyloid plaques and the tangles of the Alzheimer's brain, through the loss of memory and what they call cognitive functioning, through her depression and her desires to stop living, feminism - and Mom's voice - had finally broken through. Mom had voted for Hillary.

In the aftermath, I asked her what she liked about Hillary. Said she, after she'd had some rest, "She's a woman. I like the fact that's she's married to a president. I like her policies. Liberal woman. Aggressive. Conservative. I think she'll do what's good for women. Good for the country. Her husband was a good man and they can talk it over. I voted for a Republican candidate once but I can't remember who." 

Then she answered the question that hung in the air, which settled this question, "I wouldn't have voted for a woman if I didn't like her policies."

Nice going, Mom!

Haiku: The Calendar, our Blessing

I call it a weekly ritual, but it's not really.  Really, mom and I do it whenever we can. Ideally, it's every week but sometimes it's every two weeks. And sometimes it's whenever I can, whenever other things haven't intervened to bump this one down the priority list.

It was exceptional when we did it on the first day of January of the new year. Off the wall came the one calendar, and up onto the wall went another. Something we all do, but for an elderly parent who has dementia and isn't sure what day of the week it is, marking a new year carries heft.

My preference is to do the calendar each Sunday. It's the lightest day of the week, and prepares her for the coming week. She finds her pen and marks a big X on the day that just passed. 

It's always interesting to see what she's willing to do if we do the calendar at, say, 9pm and there are only three hours left to that day. She is not willing to X that day.

"I'll just leave it." 

I see that as a good sign. There is still time in that day, time to be lived. "Okay, Mom. That's fine."  In fact, that's great.

The ritual usually begins with "What day is today?" and I'm not willing to tell her. I want her to figure it out. 

"Well, Mom, yesterday was your doctor appointment. What day of the week is your doctor's appointment?" I want her to think this through. I want her little nerve endings to fire away and connect. I'll supply the safety net when the memory fails, which it is inclined to do.

"What day is today?" It could be overwhelming. More than 1, less than 30. Last night when we did the calendar, I suggested she try to find my birthday. She found it, and was surprised when I told her that my birthday was two weeks ago. She X'ed the days and there were a good number of X'es but she ripped right through them and landed properly on Sunday the 25th. 

Last night she also wrote down her 2:45 hair salon appointment for today. While I doubted she'd remember when "tomorrow" came, it was important for her to do, for many more important reasons.

All the more interesting is this process, because we do it by telephone: I'm 300 miles away.

TJ's household weekly haiku website challenges us this week with the household item, a calendar. To me, this has a unique significance. To elderly moms, to elderly dads, I dedicate this haiku:

I summon Mother

to mark this day from others.

Behold! We're still here!

This is the blessing!

The Burden Interview: Of Mothers, Caregivers, Sons and Daughters

"You're better at it," wrote my brother in an email after I complained that he wasn't doing anything for our elderly mom while I was doing everything. 

His words still sting like a bumble bee.

Was that really supposed to appease me, or my primary care physician who was becoming extremely concerned as my blood pressure was rising higher and higher and higher and I was becoming pre-diabetic from lack of physical exercise? Or was it supposed to provoke?

Add to that the layer that he, my brother, lived only 20 minutes away from our mother, while I lived 300 miles away. 

A Boston-based 2012 study indicated that daughters, twice as often as sons, become the elderly mother's caretakers. But still, sons comprise up to 30% of those care giving for elderly parents.  In Canada up to 30% of those caring for elderly parents are sons, shows a Canadian study. The "elderly parents" are usually mothers, since women generally outlive men. 

While the men in the Canadian study indicated positives as well as negatives in caretaking, they still assumed that responsibility. Married men generally had the support of their wives, with whom they discussed decisions they were making. 

So how does it get to be the daughter living six hours away becomes the primary caretaker when the son, living 20-25 minutes away, does virtually nothing? And what repercussions does this have on my, the caretaker by default, health, finances, social life and emotional well-being?

After another email months later to my brother in which I outlined everything I'd been doing vis a vis my mom and the toll it was taking on me, his response was "Thanks."

Mine back was was "I don't want your thanks. I want your help."

While I could never anticipate my mother's declining cognitive, and physical, condition, I also could never anticipate that I would get absolutely no help or support from my "bro" or support from my sister-in-law, receiving instead just the meek justification for why it was that he was totally defaulting on the small things, including asking for information about her current health, and the very large and major things and decisions.

The word "burden" is used repeatedly in all studies about adult children as caretakers of elderly and frail parents.  And it completely amazed me that there is something actually called "The Burden Interview," which I discovered on an online search.

This discovery was a true relief, and I gladly read the questions and circled my answer, recognizing so many aspects of what the questions addressed. Twenty of the 22 questions on the Zarit Burden Interview begin "Do you feel....."  or "Do you feel that..." One question begins "Are you afraid about..." and the last and 22nd question begins, "Overall, how burdened to you feel..."  Answers ranged from Never (score of zero) to Nearly Always (score 5).  I wish that the question "Do you feel that your health has suffered because of your involvement with your relative?" should score a 5 and that my doctor's feelings about this should add in a bonus 5 points. Feelings are big in this test.

Test takers have 30 minutes for this test. Mine took much less, let's not say how much less. Then I added up my score. Yup! "Moderate to Severe Burden."

The one question that I'd like to see the questionnaire ask is: "Do you feel angry at other family members who are doing less than you are?" or "Do you feel that other family members should be doing a better job at caring for your relative?"

I do, and I do. I wish the Burden Interview asked these questions because the complete lack of participation in my mother's caregiving by the person geographically closest to her adds a lot of stress too.

When one family member is clearly dis-involved, and wants to dis-involved, there is no communication that is going to get you the understanding, and the help, that you want. There is no way to go but to accept that and let go. To do otherwise would be to increase ones emotional stress, and therefore burden and the consequences of that. 

"Anger deprives the sage of his wisdom, a prophet of his vision," says the Talmud.  More conversations, more attempts to get somebody to see your distress or point of view would end in just more frustration, and disappointment, and a self-destructive cycle of anger.

CARETAKERS of ELDERLY PARENTS: How many others like me are there out there? I would guess I'm not the only one. 

It's often repeated how commonly families break up over money, especially after the death of a parent and the distribution of the estate.

Or, in this case, they functionally and emotionally break up long before. And when that's the case, don't hang on and let it raise your BURDEN SCORE even more!!

Eat your vegetables, Mom.

Mom has to eat. 

But she likes to sleep very late. Very late. This is a problem because she occasionally wakes up slightly hypoglycemic and dehydrated.Then she doesn't have the strength to make it to the refrigerator or the kitchen.

Mom also likes to drink wine. She can get dinner with wine every night. This is nice. She feels great in the evening after dinner. But it is a double-edged sword because with the wine she feels great, but in the morning she wakes up slightly hypoglycemic and dehydrated.

Parenting magazines are encouraging parents to teach their kids to love vegetables and fruit. They're encouraging parents to not try to hide the vegetables and fruits in another dish, say a casserole, but to appreciate the veggies as is. They're encouraging parents to serve fruit for desert, rather than carbs.

Isn't fruit salad what we, when I was a kid, used to eat for desert?  I remember as a kid always having fresh fruit salad for desert. Even in restaurants. Rice pudding was about as sweet a dessert as we ever got. Ready-made cakes weren't as available as they are now. Economic policy and a more urban lifestyle has also made carbs cheaper and more affordable than fresh fruits and vegetables.

Over many years, Mom has become too dependent on sugar and cake: THAT IS, she has become too dependent on carbs for the main meal and carbs for desert. Carbs and simple sugars, which are carbs. 

Is my mom any different from most seniors? Or most of us, who want to hang onto eating what we like?

Now I ask her to tell me what she has in the refrigerator. 

"Cantelope."

"Great. Have that." I hear her chewing away. "What else is there?"

"Pineapple."

"Great. Have that. "I hear her chewing away." What else is there?"

"Spinach."

"Spinach? Great, Mom. Lots of potassium and low carbs, Vitamin A, Vitamin C...  Especially because the doctor doesn't want you eating bananas."

Of course I only know all this because my doctor is also telling me to watch what I eat because I have become pre-diabetic. He's warned me. I've learned the hard way. I'm also beginning to love my vegetables. I've been reading AARP, the magazine that nobody wants to admit they get. Frankly, my mom's not interested in nutrition. But she does listen to me. She is interested in life.

"Great, Mom. Eat your vegetables. What else is there in the refrigerator?"