3 Inevitable Emotions of Caregiving

It happens every time.


As soon as I turn away from my mother’s door in assisted living and walk down the hallway – away from her, the emotions hit me. You’d think I would be used to them by now. For ten years my family struggled with Dad’s dementia and all the accompanying emotions. Now that Mom has been diagnosed with Alzheimer’s, I should expect the same feelings.


But still – the emotions grip my soul and I cry all the way to the car – then sit in the driver’s seat until my vision is no longer blurry.


When we become caregivers, certain emotions come to live with us. One of these emotions is sadness. The long goodbye, aka Alzheimer’s, triggers a sadness unlike any other grief I have suffered. It is not the unexpected grief of a sudden loss – a miscarriage, unemployment or illness – but rather the day-by-day grief steps caused by the regressive nature of the disease.


Even though Mom remembers me today, she will someday forget how to introduce me to her friends in assisted living. Sad, but true.


Another sadness lies ahead. If Mom does not graduate to heaven within the next few years, we will have to relocate her to the nursing home section of the facility.


“Never put me in a nursing home.” I can still hear the echo of her plea.


Sadness reinforces the truth that at the end of this particular journey, my siblings and I will be orphans.  Grief will multiply.


3 emotions caregivingAnother emotion, rejection, surfaces every time Mom forgets a memory that is important to me. “Remember when?” is no longer a game we play. And when Mom does hesitate with my name, rejection swallows logic.


I know she doesn’t mean to reject me. Somewhere, cached in her soul is my baby face, her firstborn. But I miss our shopping trips and the way we used to talk about the books we were reading. I no longer hear her laughter, because she can’t comprehend jokes anymore. When I send her cards and she shows them to me, clearly imprinted with my signature, then tells me they are from someone else – I feel rejected.


Although sadness and rejection bring pain, guilt is the emotion that tortures me.


No, Mom, we never wanted to put you into assisted living, but you couldn’t live alone anymore, and all of us work long hours. No one else can take care of you. I’m sorry and I hate it. I feel guilty.


When I hug her goodbye and tell her I have to go back to Kansas, she can’t understand why I’m leaving. Reality screams that my work is a state away, and my life cannot make room for my mother. I am the long-distance caregiver in the family, demoted by miles and the work I cannot do anywhere else. Guilty again.


Even while writing this post, I feel guilty that my emotions are front and center when Mom deals bravely with her own fear, rejection and sadness.


It helps to journal about these caregiving emotions, include them in my next book, or vent with a friend. The emotions of caregiving are now my reality, and I know they affect me deeply because they are foreshadowed by love. If I didn’t love my mother so much, I wouldn’t care.


And because I love her, I’m sad that she can’t be who she used to be.


©2013 RJ Thesman – “The Unraveling of Reverend G” – http://amzn.to/11QATC1


Lying to Mom

A TV pastor recently said, “White lies don’t exist. A lie is a lie, and deception is always wrong. Tell the whole truth.”

While I understood what he was trying to teach, I wondered—does he have any loved ones with Alzheimer’s?

One of the struggles my siblings and I now face is that we sometimes have to tell Mom an almost-lie. It feels like deception and in the black and white world of that TV preacher, it probably is.

But the entire truth sounds like a cruel answer to a simple question. For example, every day and many times a day, Mom asks, “When can I go home?”

The absolute truth is, “You’re not going home, Mom—ever. You’re going to stay here in assisted living until Alzheimer’s steals the rest of your brain and you end up in the nursing home. The next stop after that is the cemetery, but your spirit will be in heaven with Dad and Jesus, so you won’t care.”

The almost-lie is, “Maybe in two weeks you can go home, Mom, depending on what the doctor says.” Then after two weeks, the answer is still, “Maybe in two weeks.” And two weeks after that…ditto.

Thus, two weeks becomes a month which becomes 12 months and a year, which is the scenario for the Alzheimer’s patient.

We have learned that the kindest way to respond to Mom is to tell her the same almost-lie every day. Since time and space have disappeared, she accepts these answers and seems more peaceful.

Helping mom through this stage of her disease means not telling her the entire brutal truth, but trying to create a temporary world she can somehow accept.

But inside my gut, it still feels like a lie.

With Alzheimer’s, the borders of the black and white box fade. Grey is also a color and for now, that’s where we live.

In the end, the truth will finally be revealed. Then we’ll stand on the hope that both God and Mom will forgive us.