The Zen of Caregiving

Bipolar Dementia Art Chronicles - 36

(continued)

In early December I dreamt I was about to call my brothers and sisters to tell them that Mom and Dad were dead.  In another part of the dream, Mom was sitting at the kitchen table playing solitaire.  I hugged her and savored the solid feel of her and told her how glad I was that she had come.  I needed her so much.  Why couldn’t she have been the one that survived?

I felt very sorry for myself the next morning, overwhelmed by the huge needs of Dad and Elsie, and the feeling I had every time I was with Elsie that I should be spending that time with Dad.  Yet I was the one who had brought Elsie here, so I was responsible for her.

No good deed goes unpunished.

At the doctor’s office with Elsie, while I watched a technician give her an echo-cardiogram, I saw how enlarged her left ventricle was.  This was a sign of atrial fibrillation—a very fast, uncontrolled heart rhythm caused when the upper chambers of the heart quiver instead of beating.  The technician also pointed out the colorful sparks indicating mitral valve prolapse—tiny leaks in the heart valves.  Elsie’s pumping action was good for her age, though, at forty-five percent.  That’s what we needed to find out.  In order to prescribe a channel-blocker to control the atrial fibrillation, Dr. M needed to know that her heart’s pumping action was strong enough because a channel-blocker slows this down.

The technician told us there was nothing to get excited about, that Elsie’s heart was aging normally.  He said sometimes an extra cup of coffee or chocolate will cause atrial fibrillation because the aging body becomes more sensitive.  Later at lunch Elsie had a big cup of coffee and we each ate a Lindner’s Tort for desert.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Free NIH Conference on Preventing Alzheimer's & Cognitive Decline

The National Institute of Health is offering a free conference on Preventing Alzheimer's Disease and Cognitive Decline on April 26-28 in Bethesda, Maryland.  If I lived anywhere near there, I'd certainly want to attend.

This conference is for both health professionals and the public: invited experts will present the latest information; attendees will have a chance to ask questions and join discussions; and at the end a panel will prepare and present a consensus statement on the issues.

Some of the questions that will be addressed include:

    1) How can the risk of Alzheimer's disease be reduced?

    2) How can cognitive decline be reduced?

    3) How are the factors that affect cognitive decline and Alzheimer's related?

    4) What are the therapeutic and adverse affects of intervention?

    5) What studies should be done to improve our knowledge of such interventions?

It is easy to register online for this conference.  To find out more about it, see Preventing Alzheimer's Disease and Cognitive Decline. 

When a Parent Has Alzheimer's or Other Dementia, Children Have to Grow Up

Most children change roles with their parents at some point in their parents' aging process.  Usually a child who is self-reliant and doing well in life will be ready for the change sooner than a child who continues to struggle to get his own life together. 

Adrian has always been the kind of father his sons can turn to when they need help.  He has taken on that role happily, but now that he is 83 years old, frail, and suffering with dementia, possibly Alzheimer's, he can no longer do it.  No one in their right mind would expect him to.

Having a parent with Alzheimer's or another form of dementia requires that you immediately grow up, if you haven't already.  You will now have to be the strong, protective and caring one. You will no longer ask your parent what he can do for you, but what you can do for him.

With Alzheimer's, Simple Things May Become Complicated

Adrian has been managing quite well since he was diagnosed with Alzheimer's and started taking Namenda.  But recently he has been having a problem figuring out the difference between incoming and outgoing mail.  The concepts of "recipient" and "return address" are hard for him to get a handle on.

Because of this confusion, sometimes Adrian brings back mail I have put in the mailbox to go out.  This is by no means a big deal, but it frustrates him because he can't figure it out.

When small things begin to get complicated for someone with dementia or Alzheimer's, it's best for those of us who are the caregivers to find ways to get around these problems.  I can make sure I alert Adrian that there is outgoing mail in the mailbox.  Or I can take the mail to a public mailbox in town.

If all Adrian has to do is bring mail home whenever he sees it in the mailbox, that will simplify things for him. 

What can you simplify things for the person you are caring for?

Caregivers: Are You Prone to Passive Aggression?

It's so easy to fool ourselves, as caregivers, into thinking we are doing everything in the best interest of our loved one.  Unfortunately, it's all too easy for resentment to build up to the point where we outwardly seem to care, but our actions tell the truth.

I've been under stress lately because my relief person is away on holiday.  I am alone with Adrian 24 hours a day, and his needs are so great sometimes, they get me down.  That is no excuse for passive aggression, but it reared its ugly head anyway.

I was taking time out on Christmas Eve afternoon to call an old friend in Canada.  In the middle of my call, Adrian approached and started to show me his glasses.  I waved him away, indicating I wanted to finish my phone call, but he came back a few minutes later.  I told my friend, "I've gotta go.  Adrian needs me."

Adrian's glasses had fallen apart, yet again.  I've never known anyone whose glasses were so prone to fall apart like his, and I'm not talking about a single pair.  He must be awfully rough on them.

First, I tried calling some local opticians, but they all seemed to be closed or about to close for the holiday.  So I found my kit with screws and tiny screwdriver to fix them myself.  I managed to replace the screw, but it didn't seem very tight, so I found some super-glue to make it permanent.

Well, in my hurry, I put the glue in the wrong joints--the ones that are supposed to bend.  So I kept bending them back and forth to keep them from sticking.  Then I added glue in the right spots, but I put in too much, and the glue dripped onto the lens itself.

Panicked, I grabbed a tissue and tried to rub off the glue, thereby creating a blur across the lens.  I was doing all this over a piece of paper I had put down to protect my desk, but when I tried to pull it up, I found it was now glued to my desktop.  Then I noticed the scissors I had used to cut the end of the glue bottle also were stuck, and while trying to get the glue off them, almost stuck my fingers together.

That's what passive aggression is all about:  you seem to care and to be helpful, but you are actually screwing everything up because you are angry or resentful.  Wouldn't it have been better for me to ask my friend to hold a moment and say to Adrian, "This call is really important to me.  I will help you when I'm finished."

I need to learn how to set better boundaries, how to say "no," how to protect my own space.  This is necessary in order to be a loving caregiver. 

 

When the Caregiver Wants to Crawl into a Hole

That's how I feel right now.  I don't know why I'm so low, but it's very hard to pull myself up and out. 

In some ways, it's making me a better caregiver, because I'm more sympathetic to Adrian's struggles.  Recently we received the gift of a "sodamaker" machine that makes seltzer from water by pumping in CO2.  I learned how to use it quickly, but Adrian has been complaining that he wants to be able to use it also.

"You don't need to know how to do it unless I die before you," I told him.  But then I relented and offered to show him.

Unfortunately, with his bad eyesight and bad shoulders and arm, he couldn't do it very easily. 

"This really boosts my self-confidence," he said sadly, as I took over the job.

We are old, we are old, we shall wear the bottoms of our trousers rolled. (Taken from Prufrock.)

A friend called to tell me his father died.

This morning I was reading Pema Chodron, and it felt so true.  My immediate emotional response was that I don't love myself.  Fortunately, things change, and maybe tomorrow I will.

A Caregiver's Lament: Does It All Rest On My Shoulders?

Adrian started a new medication (Strattera) a month ago, and today we had to see the doctor for a follow-up appointment.  What was I going to tell him?  Was Adrian experiencing any bad side effects?  Were we seeing any positive results from the drug?

I felt bad because I didn't have any solid information on either question, and I considered it my job to know the answers. 

As caregivers, we often feel that it all rests on our shoulders.  If we don't take care of it, who will?  But we are truly NOT responsible for everything and will NOT always know the answers.  

I take a breath in, a breath out, soften, relax, and let go. 

The doctor's visit went fine.  It was too early for positive results from the Strattera, and Adrian reported no significant side effects.

I have to remember that I AM NOT IN CONTROL.  LET IT GO.

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?

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.