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.

A Place for Mom? What the Pictures (and the Administration) Don't Tell You

The photos of the stately homes-turned-senior living look so nice you want to live there yourself. The lawn is green and plush. The dining room is so plush it looks like it could be in the Waldorf. Or Trump Tower. Or the Titanic.

Your grey-haired mother, or grandmother, is surrounded by and being hugged by care staff, and all are smiling profusely.

Don't fall to the advertising gimmick. Just think how great these photographers make your greasy Chinese food take-out orders look  But this is your mom, or your grandmom, or your dad, or your granddad. This is her life, and in many ways yours too. Or it will become yours.

They may show photos of the Independent Care on the Assisted Living page. 

You look at what's nearby, look at the websites, maybe A Place for Mom, but this is not like Amazon, where the information is readily available. You cannot see the reviews until you register. Worse, you cannot write a review until you register. 

You take a trip there, for the day. Looks nice enough. You may see a golf course. You may see tennis courts. They show you all the beautiful stuff.

Then the application. There's usually a lot of questions about finances, your elderly parent's, and maybe even yours. There's a nonrefundable deposit for the application. There's a Plan A and a Plan B and a Plan C, each one requiring a different amount up front and a different monthly fee. How do you choose? This is new stuff.

Because of the up front deposit, you really cannot be doing too many applications and you don't have time to really go and talk to residents. 

And when you or they have to make that decision, it may need to be rather quick.

I'm going to write a series about what to beware of. Believe me, you won't read this on the senior living websites, and you won't be told this stuff when you go check the places out.

But it's all very deliberate, and once your parents has made the decision, or you for your parent, you're pretty stuck, with the upfront money usually required. This is the rest of their lives.

Never forget that this place is in it for the money. They are in the business of helping senior, but they are in it for a profit and that profit motive will affect every aspect of your or your parents' lives. Smaller corporations become bigger, and pay dividends to shareholders. It's much more complicated than you realize, before you begin this journey to help yourself or your loved one.

Let's visit this. I'm happy to share what I've learned the hard way.

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?"

Caregiver? STRESS ALERT: Take care of your own health.

"One sixty nine over eighty," the nurse at the CVS Minute Clinic said as she unwrapped and removed the inflatable cuff from my arm. "That's high. Do you always have high blood pressure?"

Always? I never had high blood pressure. I'm the one who everybody points to as living a healthy lifestyle and getting plenty of exercise.I'm the one who does yoga. Back home, I put the numbers into the search bar on the internet. 169 over 80. Hypertension. I don't know what those numbers really measure, but I know it's not good.

My annual medical exam was scheduled for the following week. I would get my blood pressure remeasured by my primary care physician, and we would discuss this.

One week later, it was slightly lower but basically the same thing. It was as high as that of some long-time heavy smokers I know. 

THIS is stress. Stress caused by a full year of managing, or dealing with, my elderly mother's issues. Trying to save her from financial devastation and medical destruction. All the while I was trying to write, publish, and promote my book, and other creative and professional endeavors (not to mention time and energy for my husband). I knew that I wasn't getting much exercise, I wasn't sleeping well at night, I knew that my routine was so centered around her, but I never gave a moment's thought to that this might be affecting my own health in some major way. I knew I didn't have as much time for my work and writing and my book as I would have liked, and that created internal - I would call them philosophical but they play out in the real world and in real lives - debates about taking care of others vs taking care of self. I knew I was stressed but you should see the looks on people's faces when I tell them I have hypertension.

"You?"

At my annual medical exam, my doctor asked the usual questions: "Are you getting exercise?" My response was limp. Sometimes riding my bike, but no long distances any more. Sometimes but rarely getting to yoga. Sometimes but rarely running. Playing tennis with my husband, but only on Sundays in the spring and summer.  And my doctor told me to get more exercise and come back in three months and get retested.

This in combination with also being told I was borderline diabetic created some serious talks and evaluations regarding how I manage my own health, diet, life, and also my mother's.

This is what I learned:

• Walgreens is amazing for anybody with high or low blood pressure. They will take your blood pressure for free. When you go, write down the result, and date it. I keep mine on my "notes" on my iPhone. I went monthly. With Walgreen's, there is no excuse for not getting your BP checked. No Walgreens? There is surely some pharmacy nearby. Senior centers often have regular and free BP screening.


• The gym was amazing, especially given this awful winter. Even without the winter, it gave me a routine that I could stick with. I usually went late afternoon or early evening. I made sure I listened to music on my iPod that was relaxing, but kept me moving. For me this meant Neil Young, especially "Harvest Moon." I had a full workout, including 20 minutes running on the indoor track. Once a month I would use the steps machine, which would measure my average and high heart rate. THIS TOO I would write down and keep a record of. Because I don't have enough time to go to the gym and do yoga, I incorporate my yoga breathing and 'asanas' and relaxation techniques into my gym workout.


• Vulnerability. We know we are stressed but it's more difficult to acknowledge how that stress is affecting us physically, and the degree to which it is affecting us physically. While some physical conditions are beyond our control, high blood pressure is often well within our control.  As we age, we become more and more vulnerable to stresses on our system. We are faced with conflict - ourselves vs those we love. And some of us are in the "sandwich generation." There are things I couldn't not do: Help my mother with her divorce, help her move from her home to her apartment, help her move from her apartment to the senior community, and so on. But many things, such as maintaining her car and making sure those bills were paid monthly, were unnecessary and only added stress to my life and my body. oing off for the day or weekend or week with my husband became an big deal, because nobody else in my family was willing to share responsibility for our mother with me. Dealing with the continued blood-letting of my mother's finances in her codependent relationship was another that I ultimately had to take by the horns, be strong, and weather the harsh disapproval that I knew I'd be up against.


• Don't miss your annual medical exam. Schedule it. Put it in the system. Then make it to your appointment. If you're afraid of what the results will say, then face that and ask yourself honestly what you can do differently to make sure that your health is not irreparably damaged and that you haven't given yourself reason to avoid going to the doctor's. Have this discussion with your spouse or significant other, if one is in the picture. My doctor warned me, and I gave myself a goal of three months to get my emotional and physical house in order. Me, the healthy one.


• Do what you need to do to lighten your burden around your elderly parent. That will pit you against your parent but for your life you need to. For me, it meant selling her car, and other difficult actions I write about. We fought. Often the fights were about her desire to have her car, versus my need to reduce my stress level, which was, literally, killing me. The fights were horrible because they pit me and my needs, physical and emotional, against my mother, who couldn't "hear" me, and what she wanted to do. The fights brought up other feelings and long-term issues. But being dead is no picnic, either.

The next time I got my BP taken, just one month ago, it was 142/74. Lower but still hypertension. 

Today was my last visit before my three-month visit to my doctor for a retest. 

This morning I went before I had my morning cup of coffee. The pharmacist came out and took the reading. My BP was 120/79. I phoned my husband and reported the good news, as if I were 14 and had gotten straight A's on my report card. Then I came home, had my coffee, and made an appointment for my 3-month checkup.

And wrote this blog post.

Why?

Why?

Today's NYT "Neediest Cases" write about a woman who put her "Life on Pause To Care for Her (Elderly) Parents".

Then she got sick and needed help from many organizations to help her purchase food, pay rent, pay her bills, etc.

I've been stressed out for years dealing with my elderly parents - not just their aging but their going through divorce, when they're 87 and 89 respectively, bitter divorce, moving my mom three times as a result, finding my brother who lives 20 minutes away from my mother not helping at all while I, who lives 300 miles away, have to manage her and her entire life by the telephone every day of the week, her memory that's been failing and failing, and failing... and my own health has been failing as a result (high blood pressure, pre-diabetic, all from stress and lack of exercise, memory lapses due to stress...) and that puts pressure on my husband.... and I wonder why G-d rewards those of us who are caretakers - isn't this a mitzvah? - with failing help ourselves.

We pray for refuah shalema for our aging and ill parents - and in so taking care of them our own physical and mental health begins to fail - and we ourselves become needy of prayers for health and recovery.