The Zen of Caregiving

Does Aging Automatically Equal a Narrower Life?

We all know of, or have heard of, a person in their eighties and even nineties who is in good physical and mental health with lots of energy, sense of humor, and the joy of daily living.  But for the most part, getting older means losing:  strength, energy, movement, memory, looks, and hair.  If you don't lose in one category, it will be another. 

How do we gracefully deal with these losses?  And do they mean we must live narrower, less interesting and joyless lives? 

At the age of 83, Adrian has two bad shoulders, balance problems, poor vision and hearing, and the early stages of dementia (most likely Alzheimer's).  These losses make it difficult for him to find joy in daily life, though he perseveres.  Having been a jock all his life, he feels the physical losses greatly.  But he continues to ride his bike, take our neighbor's dog for walks, and play ping-pong when his shoulder can bear it.  He continues to read and learn new subjects, even if he can only concentrate for 20 minutes at a time, and keeps misplacing his reading glasses.

I am probably having a harder time with Adrian's losses than he is, in the sense that I feel my life has been constrained.  We used to play tennis and go for long hikes together. Now, simply walking is hard for him and he walks so slowly it can drive me to distraction to hang back with him.  Typically, I can't, and walk ahead of him.  That is not kind.

I am fifteen years younger than Adrian, and feel younger than that.  So how do I reconcile the differences in our abilities, and his increased need for more attention from me?

Losing Touch: A Sign of Alzheimer's

The other night I rented The Truman Show and watched it with Adrian.  About half-way through, we stopped for a break.  He said the movie frightened him.

"I feel like I'm gradually losing touch with everything," he said. 

The movie had a "happy" ending, when Truman left his make-believe world inside the studio for real life.  Unfortunately, the loss that Alzheimer's patients feel will not be restored.  The best that can happen is that good care and medication postpone the most devastating effects.  And at some point, when the disease has advanced far enough, the patient is not as cognizant (it is believed) that they are suffering the loss. 

I wanted to comfort Adrian, but I didn't know how to.

I listened.  And then he wanted to watch the rest of the movie, so we did.  Afterward, he said he felt better. 

Super-Brain Yoga Exercise to Improve Memory & Brain Function

This morning at Sunday's meditation group, I learned an exercise that is supposed to help with memory and brain function.  This "super-brain yoga" video describes the benefits to everyone, from children with autism to seniors with Alzheimer's. 

The video doesn't show the exercise completely, but it gives you the general idea.  With your left hand grasp your right ear-lobe, then with your right hand grasp your left ear-lobe.  Now, bend at the knees and as you bend, breathe out.  As you rise, breathe in.  Continue to do this for three minutes.

I came home and taught the exercise to Adrian.  He said the 3 minutes felt like a long time.  We will attempt to do it every day and report here how it works.

Have you tried it?  Please comment below and let me know how it worked for you.

Caregiving Before Zen

I have dipped my toe in the waters of meditation and mindfulness from time to time, but having my husband diagnosed with Alzheimer's brought me to understand that I had no other option.  I could sign myself into the psyche ward at the hospital, or change.

I'd already done caregiver duty for my father and ex-mother-in-law.  I didn't manage that one well either, but was able to finally pull out of my depression with the help of medication, therapists, and the deaths of my charges. 

When my husband started gradually showing more and more signs of dementia over the past two years, all I wanted to do was escape.  "I can't do this again," my mind said.  "But you must do it.  You love him and he's been a good husband for 27 years.  He deserves to be cared for.  You'll do it whether you want to or not." 

And so I did.  But not gracefully.

On World Alzhemer's Day - An Urgent Call for Funding

Those of us who have or had a loved one with Alzheimer's know the cost, but an Op-Ed by Alzheimer's Association President Harry Johns warns what is in store if more is not done.  We have cut coronary disease mortality by 63%, thanks to funding averaging $3.70 per American.  We are spending the equivalent of $8.60 each for cancer research, which has resulted in a decline in cancer deaths.  But we are spending only $1.39 per person for Alzheimer's research.

Official statistics recognize that Alzheimer's now kills as many people as diabetes, and more than breast and prostate cancers combined.  According to the Alzheimer's Study Group, those with Alzheimer's will cost taxpayers $20 trillion over the next 40 years.

We can change this by increasing funding for Alzheimer's research.  There are exciting scientific breakthroughs and opportunities which are not moving ahead quickly enough because of a lack of funds.

Read The Op-Ed piece in its entirety here: World Alzheimer's Day Op-Ed.

It's important for caregivers not to take things personally

It's hard sometimes when we give and give and give, not to get upset when our loved one gets angry at us or says something inappropriate.  The other day Adrian said to me, "I'm not sure I can trust you."

     I waited, without reacting.

    "But I'm not sure I trust anyone," he continued.  "I guess everyone feels that way."

    "No," I said gently.  "Everyone doesn't feel that way. I think it's a touch of paranoia you're experiencing."

    "Maybe you're right," he admitted. 

    The important thing was that I stayed calm, did not get defensive, and did not say, "You're paranoid."  He knows from past experience that he sometimes lets paranoia take charge, so he was ready to consider this.

    I must say that a couple of months ago, I don't think I'd have handled this as well.  Self-righteous indignation or panicked defensiveness was my usually mode of response in the past.  I'm trying to learn a new way. 

World Alzheimer's Day coming up September 21: Memories Matter

As we watch our loved one's memories being ravaged by Alzheimer's and other forms of dementia, it is comforting to know that all over the world, people do care.  Scientists are working on cures, patients are volunteering for drug trials, and many organizations are raising money for more research.

In the UK, the Alzheimer's Research Trust has set up a website for people to share their memories, with the important message that memories matter: memories-matter.org.  This is a major new campaign that draws attention to the memory loss experienced by the 700,000 people in the UK who live with Alzheimer's and other dementias.

In the US, the Alzheimer's Association is the leading voluntary health organization providing support to families facing Alzheimer's and funding research that will get us closer to a cure.  On their website, they offer several ways to participate, including joining or starting a memory walk, hosting a tailgate fundraiser, or coordinating a "casual for a cause" at your workplace.

In Delhi, there will be a talk at the India International Center by Smt Nirmala M. Narula, President of the ARDSI-Delhi Chapter in collaboration with the Alzheimers & Related Disorders Society of India.  Working together around the globe, we will hopefully save millions of memories that otherwise will be lost.

The Agony and the Ecstasy of Medication

I've been trying out various medications for depression lately, and so has Adrian.  He needs his to cope with the onset of dementia and possibly Alzheimer's.  I need mine to cope.  I briefly tried Cymbalta and Celexa, which gave me headaches and nausea and kept me from sleeping. 

Now I'm taking Lexapro, which seemed to have fewer side effects, except that slowly I started turning into a zombie.  No energy, no ambition, no desire to do anything but sit around and take naps.  Yes, I am more mellow with the Lexapro, but at what cost?

The good news is that I now have an idea what Adrian has been complaining about for months: feeling tired and unmotivated all the time so that you have to force yourself to do anything. My natural state is to have lots of get-up and go in the morning, tackling my to-do list with zest.  There's no way I'm going to put up with this lethargic monotone.  

I'm pretty sensitive to drug side-effects, and that's why I usually do best on none.  I thrive better with lifestyle management like exercise, fresh air and meditation.  But Adrian really needs to be on the meds he's taking, and it's unclear which ones might be having negative side effects in the first place. 

When we're caring for someone and helping them make decisions about medication, it's always tricky to weigh the benefits against the negative side effects. But it's important to take all complaints seriously, even if it takes much longer to find a combination that works.

Caregiver Guilt

As a caregiver, how much must you do before you stop feeling guilty? 

Whenever I take a "break" from my husband, it's hard for me not to feel guilty, even though I know it's the best thing for me and for him.  If I fall apart, what good will that do him?  

I was talking with a daughter who had left her elderly father in the care of live-in help.  The daughter was traveling with her own family and was enjoying this time on their own.  "I don't feel guilty," she said, "but my sister always does." 

Both daughters are devoted and loving, spending as much time as they can with their father.  But they have children, husbands, and jobs, and cannot spend all their time with their father.  I admired the one who could walk away without guilt, at the same time realizing, "that's not me."

As caregivers, we need to have as much or more compassion for ourselves as the one we are caring for.  I need to put this good advice into practice.  How about you? 

Hearing a diagnosis of Alzheimer's

I haven't been keeping up this blog as regularly as I had been since the neurologist said to my husband, "You definitely have dementia, and it's probably Alzheimer's."

Getting such news is always a shock, certainly to the patient.  But I was shocked as well, even though I had seen more and more evidence over the past few years to confirm this diagnosis.  I was pretty sure Adrian had dementia, but the word "Alzheimer's" was much scarier. 

Neither of us has done well emotionally with this news.  Adrian denies he has Alzheimer's, and I feel isolated and lonely, as if I am dealing with the problem by myself. 

What is the best way to cope with this?  Do I pretend he's fine?  Do I write up an argument of proof and show it to him whenever he denies the truth?  I wonder if other couples have had this issue and how they've handled it?

I promise to update more regularly, and to fill in the missing pieces.