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.

Aromatherapy for Seniors, Alzheimer's Patients (and Others)

"There is no cure for Alzheimer's" I read again and again. I've alternated between accepting that claim and refusing to accept it. Scientists promise a cure in the future, but what about now? Even if there is no cure currently, maybe it's possible to stop its progression. This - stopping the progression of Alzheimer's - is in itself a blessing and this is my goal for my elderly mom.

I think I get a wisp of a sense of how difficult it is to remove plaque when I think about my semi-annual teeth cleanings! Ouch! It is so  much easier to not allow the plaque to build up in the first place. Or when I think about my own high cholesterol numbers, which is why I've been on Lipitor for so many years. As I just discussed with my doctor, the plaque in the arteries cannot be removed, but it can be stabilized. Or its buildup can be contained by smart eating. Such would be the plaque in the brain of Alzheimer's sufferers.

When it comes to my elderly mother, my mission is to halt its progression, and to stop this dreaded disease from further debilitating my mom's mind and robbing her of her intellect and memory. When Aricept had to be discontinued due to gastrointestinal side effects, I discovered that the Exelon patch bypassed that issue, as it was transdermal, and she's been on the Exelon patch ever since with minimal side effects.

My most recent protocol is aromatherapy. AROMATHERAPY? I do yoga and all, but I have my limits in this wellness craze. 

Still, need mandated that I venture forth once again into cyberspace, at which time I found a study done by faculty at the Tottori University, Yonago, Japan, which used the essential oil rosemary. Rosmarinus officinalis. The same rosemary that we use for cooking to make food smell yummy? The same herb that I have growing in my garden? The study also used the essential oil of lemon. In this study, the two essential oils, rosemary and lemon, were added to water in a diffuser. Both are presumed to have properties that, by traveling through the nasal cavity, and thus avoiding being broken down in the liver, directly affect the hippocampus or amygdaloid body, which is in charge of discharging neurotransmitters. A compound in rosemary, 1,8-cineole, causes an increase in a neurotransmitter called acetylcholine. It is the breakdown of these neurotransmitters which causes the lapses in memory and cognition.

What did I have to lose? What does my mom have to lose by trying this?

I ordered a diffuser and ordered the essential oils, and we went to work. The morning aid comes in to give my mom her meds and follows the protocol indicated in the study, exactly. She puts just enough water in the diffuser that the oils diffuse in under two hours, while my mom goes back to sleep. She sleeps as close to the diffuser as possible because she loves smelling the sweetness. Pretty interesting from somebody who insisted she had no sense of smell. Is there something in this essential oil is igniting her sense of smell?

If there's any water left over, in the evenings she holds the diffuser close to her nose and just breathes in the vapors. She loves the sweet smell. And as a bonus it may actually be helping to WHAT the neurotransmitters.

Is it affecting, or improving her cognitive functioning and her memory?

I believe so.  I maintain a log of what she does, what she says, and have been keeping this for months now. We also have a week-at-a-glance book that her aids and she fill in daily. In the last 5 weeks I've seen extraordinary improvement. In addition to the Exelon patch (which, by the way, is designed to block the enzymes that break down the neurotransmitters), she is also taking the doses of coconut oil (see next blog post.)

Doubtful? Read the Japanese study for yourself by following the link above. If your parent or spouse is suffering from Alzheimer's, what do you have to lose? What does he or she?

As for the rosemary growing in our garden, I have snipped off some branches and every now and then take a deep whiff. A big inhale... AHHHHH! And while inhaling I think about how much my brain loves this.....

And this is over-the-counter! The same type of naturally-growing plant that pharmaceuticals often try to mimic in their medications.

With this nasty disease, Alzheimer's, which usually results in death, it's best to take an all-inclusive approach. And remember, it takes 20 years for the symptoms of Alzheimer's to appear. So why wait until it's too late? Do some aromatherapy with the sweet-smelling scents of rosemary and lemon.

(See also: BBC: What Does Rosemary Do To Your Brain?)

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!!

Memory Loss from Stress

We're reading about so much memory loss, memory loss from Alzheimer's, and then we read stress is actually the NUMBER ONE cause of memory loss among seniors. 

Forget about seniors for a moment - what about all the rest of us??? The effects of stress on memory is strong enough to be identified amount people under 50! That means people in their 40's.

I have my theory about my mother's inability to recall. I won't get into the details but I'm sure it's because there's so much she wants to forget. She has NO symptoms of Alzheimer's. She just has things she wants to forget. Many things.

I also think that when life gets so complicated - so many lies, so many things you want to deny - that the mind deals with it by just shutting down. What is true and what's a lie? One lie begets another lie. For her to deal with how she's disappointed me, she has to deal with the reality of those who have been lying and stealing from her, those whose love she's been trying to gain (whereas mine she was secure in????).

Doctors do a few tests, ask some questions, they see her hysteria when certain people's names are mentioned..... but the lies in our family, the splits, the bad-mouthing,the anger, the hatred, are so rampant that even lately I have been unable to deal with anything, unable to remember. So that's why I'm taking a simpler approach. I'm simply saying THIS relationship is too complex for me to even have. So let it go. Then the next. Then the next. 

The other day I went nordic skiing. it was beautiful, simple, quiet, exuberant, exhilarating. It was nothing like the way I'd been living the past 2 years. It brought me back to the years of my life when I had that quiet and simplicity in my life. It was transformative. And I can't go back.

But back to my elderly mom.... Who can tell me that this memory loss of hers is NOT due to self-imposed stress?

And who among us can think that the effects of the stress in our lives NOW will not be seen LATER?