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When to Say When, A Caregiver’s Look Back

Updated: Jan 26, 2023

“I called my sister and said, ‘I... NEED...A... BREAK!”

Donna felt guilty, but caring for her mother was taking its toll. Mel and Donna began the care giving journey with Donna’s mom six and a half years earlier. All her siblings worked or operated businesses with their spouses. Donna, a homemaker, felt like she and Mel had the bandwidth to care for Mabel. Mabel had hidden her mental decline by writing things down, so, when her progeny called, she could carry on a fluid conversation. This began after falling and hitting her head a year earlier. The hour had come, and the doctor insisted that she not live alone any longer.

After moving to Donna and Mel’s home, Mabel was able to help cook, garden and occupy her free time handily. Quilting was a favorite pastime. However, cognitive ability started to diminish, and confusion reigned with small tasks such as celery sticks becoming small pieces. Donna realized that simple, ordinary assignments were beyond Mabel’s recall and she would need more guidance in everyday tasks. Little by little, grief made its appearance as the mother she once knew passed away gradually in front of her eyes. Donna’s role was changing with each passing day as she became the guardian and Mabel became her dependent.

A delicate balance ensued that had to be tempered with respect due the aged. As Mabel’s dementia increased, repetitive questions frayed Donna’s patience. To keep her from losing her temper with Mabel, Donna started to write down answers.

“Donna, what are we doing today?”

“Mom, what does the paper say?” Upon reading the answer, Mabel was satisfied. That scenario was repeated like clockwork daily.

One of the hardest days came when Mabel introduced herself to Donna and Mel. They did not scold her, just politely responded, but Donna mourned privately away from her mom. Regrettably, as Mabel declined, Donna’s frustration and anger increased. Donna would call friends to pray for love and patience. Neighbors, family and friends would keep an eye on Mabel, especially a faithful friend, Karen, who came to their house once a week while Mel and Donna led AWANA, a children’s program, at their church. In addition, family members would keep Mabel for one to two weeks to give respite. Looking back, Mel and Donna felt they should have had respite weekly, just to get away alone. Even a senior’s daycare weekly would have helped.

Sadly, things came to a head after Mabel suffered a compression fracture in her spine from just bending over. As a result, self-care was limited, and Donna was exhausted.

Normally, Mel and Donna would be ready to receive Mabel back happily from a two-week respite, but this time was different. After two days, Donna realized she was at a breaking point and the call to her sister was desperate. Calling a family meeting to discuss Mabel’s care was imperative. Some of the siblings felt that their mother only needed assisted living care, but Donna knew their mother needed skilled care.

Thankfully, one of Donna’s nieces is a Physician’s Assistant and gave them some wise counsel.

“First, If you want to know what a care center is really like, visit at around 7 p.m. You’ll see how many staff are at the facility and how the residents are treated. Second, make sure to ask about their medication policy.”

One care center they visited automatically put their patients on additional meds that were not needed. Mabel did not need anything other than a thyroid medication. Rejecting that nursing home, they found Good Samaritan Senior Care Facility in New Underwood, South Dakota. It was a smaller, rural home where staff took good care of the residents.

Finally, moving day arrived and Donna, one of her sisters and her sister-in-law tried to make Mabel’s room homey while she was occupied with the care facilities activities. The nurse warned the family members that Mabel would forget them, but they wrote down everyone’s name so she could pray for each person. Guilt was like a smothering cloud as Donna left the facility and she wept as her heart broke in pieces.

Mel and Donna visited Mabel every three weeks because they lived a state away. Thankfully other members lived nearby, and Mabel had visitors frequently during the week. Nurses commented that Mabel was so loved, since most residents never saw their relatives. She and the residents loved to hear Donna play the piano. Mabel never lost her love of music or talking to Jesus about her family and friends, and talking to others about Him. Mabel died eight months after going to the nursing home.

Donna and Mel moved to the East coast for a temporary job change for Mel. The rest they so desperately needed healed the hurts and physical exhaustion of six and a half years of caregiving. As experienced care givers their advice is:

1. Have a plan for respite – Get in writing what family members are willing to do

2. Take a break once a month – preferably a weekend away

3. Take a weekly dinner break from your loved one.

4. Your role is changing from child to guardian.

5. Grief is always different and gradual for each step of decline.

6. Be aware of your emotions, it’s not your parent’s fault. If you experience anger or resentment – take a respite.

7. Realize your first 2-3 days of a lengthy respite is rest, nothing else.

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Jan 28, 2023

Oh Donna..... Your dedication to your Mom touched me greatly. My Mom is so far away, but I'm just a plane ride away. I wish I could be there more. Having the support from Mel is wonderful, generous, and a Blessing.

Thank you for telling your story to help others in the future.

Feb 02, 2023
Replying to

I will pass your kind words along to Donna and Mel. Thanks for responding.

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