Compassion and Guilt

7BaS98D9RZyQVaRPKtRPVA

Caregiving 24/7 often feels like a rollercoaster of emotions. The two up there in the title are Big and Frequent for me.  Compassion: How horrible it must be to literally lose one’s mind!  How awful to be so dependent!  How frightening to search for words and not find them!

Reality intervenes.  Is it anxiety or forgetfulness that prompts the persistent questions I get daily: Where are we going? (4 times en route), Do the tulips need water? (three times during breakfast).  Who is coming over?  When are we getting the car back from the mechanic?  I can’t discern whether it’s his anxiety or memory, but–alas!–I do become impatient.

So then comes the guilt. I “should” on myself.  I shouldn’t snap back.  I shouldn’t use that tone of voice.  He can’t help it. I should be kinder, more patient, more forgiving, more COMPASSIONATE, more–more–more.  Give me my hairshirt and lash.

Compassion does come from the outside as well.  Some friends offer visits, outings, understanding, golden ears that just listen to me whine.  But there’s another kind of compassion that isn’t necessarily helpful.  There are folks who want to help by offering ways to fix the problem.  They provide suggestions about herbal supplements and links to websites that tell how to reverse dementia.

I’m ashamed to say that my initial reaction is negative.  You’re asking me to do more than I’m doing already?  I already make weekly rounds with doctors, provide activities and entertainment, meals, transportation–and now I have to watch infomercials and read articles about magic bullets?  My first thought is No, thanks.  

But then I think: What if?  What if the brain tonic helps?  And so off I go into cyberspace, just in case.

If I find a cure, I’ll certainly let you know.

 

 

I – You – We

 

fullsizeoutput_4f4

 

Once upon a time…

I was “I.” I moved at my unique pace.  I had freedom and choice.  Freedom in the solitary pleasure of introversion.  I could–and did–choose to spend hours or whole days absorbed in my singular pursuits, until my own voice startled me.

My partner came and went, doing his good work, joining me for our mutual interests.  He stayed up late reading after I fell asleep.  I rose in the dark to meditate alone as the dawn peeked in. The weaving of together and alone protected my “I.

The “yous” we were to each other had a rhythm like breath.  You fix the vacuum, I shop, I get the oil changed, you make dinner, you mow the lawn, I call the plumber.

As his memory and management skills began to fade, my “I” became more of an “i.”  A lower case overshadowed by  a weighty WE.  “Are WE going to bed now?”  “What are WE doing today?”  “Are WE going to watch TV or read?”

Nowadays I think for “WE.”  I plan and make meals for two, pack suitcases for two, manage finances for two, choose daily clothing for two.  As others in this situation have said, it’s like caring for a toddler, but without the promise.  The only path is down.

And though I often feel like this:

IMG_0163

here I count the blessings WE do have: good health, loving family and  friends, stimulating activities, and a variety of resources and support.

 

 

In our area, we make use of:

-Ulster County Office for the Aging — 845-340-3456 (caregivers’ support, inexpensive legal assistance, respite care and more)

-Jewish Family Services of Northeaster New York – Albany — 518-482-8856 (counseling, aging in place, transportation and more)

-local Community Center (ping-pong, senior lunches, outings, games days, and more)

-Lifetime Learning Institute SUNY New Paltz — 845-257-2892  lifetime@hawkmail.newpaltz.edu (variety of classes offered in fall and spring semesters)