The Aftermath of Long-Term Caregiving: Is Stress the New Normal?

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Often long-term caregivers wonder if their lives will ever return to normal. The short answer is no; at least for most of us. There will be changes in your personality, both positive and negative, so what you view as normal will change.

Each day as a caregiver (to some degree) hinges on the health and welfare of our care receivers. After months or years of caregiving, stress can become a daily companion.

I believe caregivers often recognize one or more triggers that symbolize this stress.

For me it was the blinking message light on the home phone. Though the multiple elders I cared for are now deceased, to this day I rarely consider the fact that that an unexpected phone call or a message on my answering machine could possibly signal anything other than troubling news.

How the telephone became my enemy

Once my dad had moved to a nearby nursing home because of a failed brain surgery and Mom was still living in their apartment, it seemed that every time the phone rang past 5:00 p.m. there was trouble somewhere.

Sometimes the call was from the nursing home because of a problem Dad had. Occasionally, it was Mom just checking in. Too often, however, it was the dispatcher for mom's personal alarm system. This call meant that I'd need to dash over to Mom's to see what happened and send for 9-1-1, if necessary.

Mom's call generally went out because she'd fallen. Sometimes she was barely hurt. Other times there were more serious consequences. Whatever it was, I'd have to cope.

My panicked drives from my home to my mother's – too often during terrible weather, or so it seemed – loom large in my memory. Still, I was grateful that Mom could summon help.

After Mom moved to the nursing home, her calls were not so gratifying.

Mom had her own telephone in her room and she called me often. Since I spent significant time with her on a daily basis, all that was needed in the evening was for us to touch base. That, was perfectly okay. What was not okay was that she'd forget she'd just called and repeat the process multiple times each evening. Eventually, I'd have to stop answering the phone, knowing that the nursing home would notify me on my cell phone if there was an emergency.

I'd feel guilty ignoring Mom's fifth call of the evening, but I had to do it for self-preservation. Other caregivers have contacted me saying that they ignored repeat calls and they seem comforted when I tell them I did the same.

Guilt – even unearned guilt – loves company.

Finding a new normal

I believe caregiving changes us forever.

Much of the change is positive. We become more compassionate toward those who have physical and mental difficulties. We become more understanding when we see a person who is trying to cope in public with an unruly child or an adult who has dementia. We become larger people because we've experienced more difficulty.

We've gone the distance, doing what we can to improve another's life, and we are better for it.

The hard part can be letting go of a crisis state of mind even when it no longer relates to our new reality.

Yet, when we don't learn to let go of the stresses of caregiving once it's over, our physical and mental health may continue to suffer. Adjusting to a new – hopefully better – normal takes courage, insight and time.

For me, the road to normalcy meant trekking backward through my mind to keep alive memories of the times before my loved ones became so vulnerable.

I don't discount the many years of caregiving nor do I minimize their neediness. I try to give myself credit for a job well done even though I know that I was imperfect as a caregiver, because every caregiver is imperfect.

Slowly, the warm memories of my elders and what they were like as I was growing up have regained their proper perspective in my mind and heart.

These days, I think consciously of them less often, though I feel their spirits with me more. My new normal has brought me peace for the most part.

If the only thing I need to struggle with now is the still reflexive dread at the sight of the blinking telephone message light, then I'm very fortunate.

May you all find a new normal that celebrates your growth, yet allows you to lower the stress level that was so often your way of life while caregiving.

You'll never be who you were prior to caregiving, but would you want to be? You can leave a legacy through caregiving. And, though it may take time and some inner work, you should come to an acceptable normal where you can feel pride in your growth as a person and maintain a more relaxed attitude toward life.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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19 Comments

oh my. im a big , ugly, hairy, guy having my first teardrops since mothers death tonight im not even certain why. i guess i have a right to, that last year of dementia care was life the challenge of / for a lifetime .
spending time with aunt edna now. shes 90, fairly demented, and fading . i take her thru the store and help simplify her decisions and some strange thoughts go thru my head. the most prevalent one is " im actually experienced at this s**t ". cant put these emotions into words..
lost my mom but still need a care recipient.
Stress seems to come full circle (repeats itself) by many little 'triggers'. I'm finding that you're in a 'no-win' situation being a caregiver. When you 'think' you've 'solved' a problem or get to a place where things are looking 'up' something else comes up (siblings, working with medical staff/institutions, money situations...) that works against you and your 'good' intentions/will... Suddenly, your stress is right back where you started from. I'm starting to think that caregivers' (due to their kindness and good nature) are unwantedly masochists of sorts. So, somehow we have to learn to deal with it by ourselves or some kind of counseling (maybe). This scenario has been the most difficult (by far) that I've had to deal with in my whole life: Coming to terms of endearment for my 'self'... knowing that I'm doing and have done all I can do and not berate myself over and over again... it's extremely difficult for the kindhearted... isn't it?... so, the answer to me is 'yes' and 'no'... because stress in caregiving has always been 'normal'... (it's not 'new')
My mom is in LTC now but I am still very much her caregiver as I receive all the trouble calls and I make all the decisions regarding her care. But I made the decision a few months ago that I must figure out how to address her needs and live my life at the same time. As tomorrow is not promised, I may not have time to get back to things I enjoyed before I became a care giver. I was extremely exhausted and didn't do anything for myself and was becoming bitter and resentful that my other 5 siblings turned a blind eye. After much prayer and meditation, I finally realized that I was the only one who could change my life. So after 5+ years I now call my girlfriends and say let's get together. I go to the movies and the theater and I get my nails and hair done. I visit my Mom several times a week and I leave my depression about not being able to save her from this disease at the door of the home when I walk out. I realize I don't control like and death and I did not make my Mom ill. I can help, but I can't fix it. I can help her live the rest of her life with dignity and at the same time continue to have a life for my husband and children as they need me too. I had to tell myself it's not wrong to live my life while I'm a caregiver. So even if I'm exhausted I have some time every week for me now. I still have many sleepless nights and stressful days and lots of tears, but now I am no longer focused on when this will all end, it's just one of my many responsibilities. My new normal now just includes being a care giver. It no longer defines me. I still tense up when the phone rings, but now I answer it, address the need and stop at the ice cream shop on the way home to reduce my stress level afterwards. I pray that all caregivers develop a strategy to help u cope better. I did as I had too. Otherwise I believe I was on the way out.