On caregivers, faith, family, and writing…

GuiltAs a dementia caregiver, I lived under a perpetual load of guilt. It was not true, rational guilt that came from wrongdoing, but rather a constant vague feeling of unrest that continually ate at me. No matter how good a job I was doing, I never felt like I was doing enough. No matter how well I handled a situation, I always felt like I could have done better. Somewhere in the back of my mind, I had the unrealistic idea that if I did everything right, Mom and Dad would get better. When this didn’t happen, when they continued to slip away from me, I wrestled with the feeling that they were losing the battle and that somehow it was my fault.

For several years I helped facilitate a caregiver support group at my church, and I discovered that I was not alone in my struggle with guilt. Most of the members of the group dealt with the same issue. We knew that, for the most part, our feelings were unfounded and that we were doing the best job possible under the circumstances. We focused a lot of attention on encouraging each other and finding ways to overcome this guilt.

There was an article in the September 18 edition of AgingCare.com about the “Top 8 Truths of Dementia Caregiving.”  One of the eight things author Carol Bradley Bursack wrote struck me as a good antidote to caregiver guilt:

Don’t judge your caregiving skills by the response of your care receiver. People with dementia are going to have bad days. If you are educating yourself on how to cope with negative behavior, and asking for help when you need it, you are likely doing fine. Try to remember a good day when your care receiver seemed to find some enjoyment and see if you can replicate that to some degree.

There are over 4,300 members in Memory People, the Facebook support group for those touched by Alzheimer’s and related dementias. Many of the posts deal with perceived failures: Dad was angry today, Mom didn’t want to eat today, my husband refused to take a shower today. Occasionally I see a positive post about the good days – the laugh, the successful outing, the I love you – but these are few and far between.

We're Red Hat Ladies now!

We’re Red Hat Ladies now!

I know we need to talk about the bad times; I would have exploded and burned out long before I did without the opportunity to vent. But I wonder how my attitude would have improved if I had focused more on the positive. I kept a gratitude journal for a while. I bought a small spiral notebook, and each day I wrote down at least three things for which I was thankful. Some days the best I could do was to be grateful I had made it through the day. But there were positive days when it was easy to come up with more than three things, and on the bad days, it helped to go back and remember.

I wonder how much more effective it would have been if I had added pictures to my journal. If I had taken pictures of Mom and Dad when they

Mom and Dad, Christmas 2009

Mom and Dad, Christmas 2009

were clean and groomed and smiling, it might have helped on the days when they were uncooperative and didn’t smell so good. If I had taken a picture of Mom in her pretty pink nightgown when she had just said Thank you for taking such good care of me, I might have been less frustrated when I had to mop the bathroom floor again because she didn’t quite make it to the toilet. If I had made a note each time a doctor looked into my eyes and said You’re doing a great job, I might not have felt like such a failure.

The Apostle Paul wrote about being thankful and focusing on the good things in his letter to the church at Philippi. Maybe he was thinking about caregivers, too.

do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.                           Philippians 4:6-8 (ESV)



Comments on: "One Way to Deal with Caregiver Guilt | by Linda Brendle" (8)

  1. Sue Allen Brown said:

    Feeling particularly like a failure today, so thank you and thank God for this well-timed reminder. The days are hard.

    • Sue, I’m so sorry you’re having hard days, but I’m so grateful that God’s timing was perfect as always. Love you and praying for all of you.

  2. Linda, there was and is no reason for you to feel any guilt. You had to be like an angel to them and I have no doubt that you went above and beyond what could be expected from anyone in your situation. Your parents were lucky to have such a good, loving daughter. Hugs to you.

    • Thanks, Krista. As I told my brother who worries a bit when I write a post like this, I’ve dealt with it and put the guilt behind me. But I know there are so many caregivers out there who are still going through it, I think it’s important to write about it from time to time. Hope you’re feeling better.

  3. Linda Greer said:

    Came across this on fb and brought tears. I, too, am my Dad’s primary caregiver. We have private paid daily caregivers because I work and frankly, I’m not sure I could do it 24/7. 15 hours a day is a lot. People don’t get it. It’s hard to stay positive, but yes, those smiles, those “I love yous” are SO worth it.

  4. Struggled with guilt when Mama was alive and still struggle with it at times now, even though she’s been gone more than a year, when I realize all the “would have, should have, could have”‘s I didn’t then. Have, after much prayer, finally realized that I can’t undo anything I screwed up then. All I have is today. I can live it buried in the past that I can’t change or I can take the lessons I learned and move forward and help others. I chose the second. Thanks for your post!

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