caregiver stress and burnout are normal but not always necessary.
we must care for ourselves in order to care for others.
Caregiver survival is especially significant for caregivers over the age of sixty-five who care for loved ones with dementia and Alzheimer’s–a significant number die before they’re finished caregiving.
Shortened patience, lengthened anger.
Inability to sleep.
Drinking and/or smoking more or self-medicating.
Denying there’s anything wrong with loved one.
Denying the need for help.
Hopelessness, ongoing depression.
The average length of time a caregiver cares for a loved one with Alzheimer’s is six and one-half years. That’s 2,373 days. It’s hard to hold onto hope that things will get better when you’re facing what feels like an uncertain time frame.
Remember, those stress surveys from the late seventies and early eighties?
There was a condensed list of 25 stressful life conditions and you were asked to check each one that applied within the past year. The statements included items like–
Death of a Loved One
Marital separation or Divorce
Illness in the family
Back then, when life was less volatile (yes, even during those stellar inflationary years), the assessment tool warned us that if we checked one or two we’d be suffering from high levels of stress and should seek help.
Back then, many of us would not be able to check one much less two items. Today, we could easily check five or ten!
What does this say about LIFE today versus yesterday? We are living in very stressful times!
Below are a few examplesof caregiver stress and burnout. You may have others and I welcome you to add them in our comments section.
LACK of SLEEP
While my father lived in our California home, we lay awake at nights because he would get disoriented between night and day and wander. He’d jiggle the door knob of our bedroom door, which we were advised to lock most nights in order to catch up on lost sleep.
My thoughts and worries also kept me awake at nights. There was so much to do that I feared I wouldn’t remember it all. (I had a calendar and I wrote lots of To Dos, but when that spark of an idea strikes in the middle of the night, I didn’t want to forget!)
LOST PATIENCE … ANGER
My father would go through stubborn phases. With my husband David helping me, we had an outlet in each other. We were able to temper our anger but when we grew so exhausted and couldn’t, we did silly things that turned out to be ridiculously funny.
One day as my father was having a temper tantrum and insisted that David show him where his “home” was (his room); I followed David and my father and pretended to strangle him. I called David’s attention to my action, which made him laugh. My father stopped to look at David then me. Seeing us laugh, he smiled and then began laughing. We all began laughing!
What if I was the only caregiver and didn’t have a support partner in David? It is easy to see how one caregiver can grow exhausted and lose patience and even grow angry.
Most caregivers don’t take care of themselves. However, David and I made sure to sit with my father and eat well-prepared balanced meals since we were concerned about my father’s nutrition. Isn’t this sad? We care more for others than ourselves.
Once we placed my father however, we went back to our old ways of one meal a day. This was not an ideal arrangement to maintain our strength as caregivers. Despite not having 24-hour responsibility for my father’s care, we still were tethered to him as is described in detail starting with The Great Escape chapter in “Where’s my shoes?” My Father’s Walk through Alzheimer’s .
CAREGIVER DEMENTIA Just as people with Alzheimer’s suffer memory loss, get disoriented, and even hallucinate, so did we! The label, caregiver dementia, has described for some time the Alzheimer’s-like symptoms experienced by caregivers.
David began hallucinating. The Ultimate Betrayal chapter in “Where’s my shoes?” My Father’s Walk through Alzheimer’s includes David’s letters to me (while I was on travel) of feeling pinned down under the covers of the bed or people taking his things (a common complaint of those with dementia).
I was not immune either. I backed into the garage door three times–two power antennas, one back-end repair, and one new garage door. I even became disoriented while driving on a familiar street.
Although, the stress and burnout we were suffering were normal for caregivers, we didn’t have to suffer. We grew more and more exhausted each day and realized something must be done for my father’s and our safety.
David and I started showing signs of Alzheimer’s trying to keep up with my father’s care!
We explored options of in-home care, board and care, assisted living, and nursing care.
The third and final article of Surviving Caregiving will address
Self-Care for Other Care.