Thursday, May 29, 2014


The grouchy face of an overworked, overtired caregiver
Paul and I at the beautiful San Elijo Lagoon 2007 (photo by 5 year old Alexander)

The following is another piece from my talk at the California Brain Injury Assoc. conference

From Spouse to Saint=No Fun Zone:
The rest of this story is about me landing on the ground....taking things one day at a time, becoming a responsible adult that could work and make a living, take care of Paul and our young son and find some time for myself. It's was a daunting enterprise.

I found friends to be extremely helpful. As things with Paul worsened some friends went away and some came closer. In retrospect I wish I'd gotten myself into some kind of therapy or self help group earlier. Eventually I went back to a 12 Step Program I'd been in years before, Alanon, which became very helpful. I needed a place to put my anger and sadness. I felt like I had to 'buck up' suck it up, and take it all on, and be a warrior for my family.

Eventually I found a few helpful resources. One was the Southern Caregiver's Resource Center in San Diego. I arranged a meeting and told the social worker my story. We talked about what she called Caregiver's Burnout. She made me feel okay about what all I'd done so far by saying "Some caregiver's in your position would have given up a while ago, and some could go longer. It all depends on what you can handle and only you will know your limits". She helped me get onto a temporary program called Caregiver's Respite Time and the State of California paid for Paul to go into a very nice and nearby Alzheimer's care facility for 12 days. It was a lovely place, they sewed his name into every shirt and pair of trousers he came in with. And it was heaven for me, and Alexander to be free to drive out of town, or just hang out somewhere besides home for hours at a time.

Avoiding Caregivers Burnout:
1. Make time for yourself (steal it wherever, whenever you can)
2. Honor your feelings and make time for them
3. Know when you are reaching your caregiving limits
4. HALT: don't let yourself get too- hungry, angry, lonely, tired
When It's Time To Ask For Help

By 2009 I could no longer take care of Paul. Our son Alexander and I could rarely get away and Paul was not easy to take out of the home. It was dangerous leaving him alone, for fear he might start a fire.

He did indeed start an oven fire when we were away for a day even with our neighbor looking in on him every hour, Paul put a pan in the oven with oil in it, the apartment alarms went off and when we got home our neighbor was spooning oil out of the bottom of the oven.

I rallied a little money from Paul's family and used some savings and hired a full time "baby" sitter to stay with Paul while I was at work. It was expensive. I didn't have enough, nor make enough money to keep this up and I couldn't handle this for long...

San Elijo Lagoon w Paul and Alexander 2007

*      *      *

And a memorial thank you to this kind hearted friend from our church who watched Paul and Alexander on numerous occasions, just to give me a little sanity break. Bless you dear friend, Heidi Salomone.

1 comment:

  1. At least there is symmetry when a child takes over as the primary caregiver for an aging parent. A spouse is supposed to be a support, not a burden. It's important to take time to relax. Someone gives me a back rub, and suddenly I am aware of all kinds of soreness that was hidden from my consciousness. Back and neck muscle tension are a sign of packing around emotional and physical burdens for me.

    Paul |