For the True Angels, It's a Calling

"I'm tolerating her,” Mom said when I asked how things were going with her live-in caregiver. My heart sank. I wanted things to work out with this woman we placed in Mom's home to take care of her. I needed it to.

After Dad died a year ago, my siblings and I regrouped. There was no disagreement among the 10 of us that Mom, 88, needed care. She had beginning stages of dementia, diabetes, congestive heart failure, and now the tremendous grief of losing her husband of 66 years.

But we couldn’t agree on how much care Mom should have. So for the time being, we went back to "the schedule," which meant the four in-town sisters would take one day a week each (our day off from our fulltime jobs) and use the two hired independent caregivers for the other three days. The plan was to be with Mom from 8 a.m. to 8 p.m.

We’d arrive in the morning, give her breakfast and morning meds including insulin; get her showered and dressed. Sometimes we’d be able to realize the plans we had made and take her out. Other times, she’d be too tired or just didn’t want to go out. She’d sit in her recliner, tethered to her oxygen tank, and watch TV or nap.

In the evening, after dinner, we’d perform the leave-Mom-for-the-night regimen. We'd get her ready for bed, leave a night snack on the counter, prepare coffee for the morning with a sticky note that read: "coffee ready, push button to start." We'd leave a second note reminding her what day tomorrow would be and who was coming. We'd make sure the knobs were off the stove and the night lights were on in the kitchen. Then we'd kiss her good night, encourage her to use her walker and leave, locking the door behind us.

We didn’t talk about what happened next, but we each did it. Before pulling out of her driveway, we sat in our car and cried. Sometimes just a little. Sometimes a lot. We admitted it to each other months later.

And in the morning, before opening the door, we’d take a deep breath and say a little prayer. We never knew what we’d find. One morning it was this: a fry pan on the stove, nothing in it, the smell of gas in the kitchen. Because the knob was gone, she used a towel to grip the little metal piece and turned it enough to release gas but not make a flame.

Another morning it was this: she was in the bathroom, trying to take off soiled pants and socks. She was struggling to keep her balance on the wet tile floor.

Meanwhile, the miracle we had been waiting for happened. The reverse mortgage we had been working on with Senior Equity Income of Okemos, was approved. Before long, Mom’s newly established trust fund account held enough money to pay for 14 months of 24/7 care.

The family strife that followed is almost too painful to recall, but I must. I know what happened between my sisters and me is all too common in families struggling with similar life-changing decisions. We were divided. Two of us wanted to hire full-time care. We openly admitted it wasn’t just for Mom; it was for us, too. Rita and I could no longer do it. We needed a break and said so. We also felt strongly that Mom needed professional care. This, according to the other two sisters – and two out-of-town siblings they lobbied – meant Rita and I were selfish and didn’t care about robbing Mom of her independence. They also worried the money would run out.

After endless telephone conversations (many that did not end peacefully) and text messages with siblings across the country and around the corner, Rita and I convinced the majority. One sister held out, didn’t speak to us for months and no longer socializes with us. She’s been heard to say her life is much less stressful without us in it.

We found an “affordable’ home care agency and set an appointment at Mom’s. I didn’t like the fact that the representative, I’ll call her Mary, hardly spoke to Mom. Nor did I like the fact that she didn’t ask to see the house. But I did like the price. So we signed, and I convinced myself it would be fine. Rita agreed.

When I first met Carol, the caregiver who would stay with Mom, I didn’t like the fact that she barely talked to Mom and didn’t look any of us in the eye. But, again, I liked the price and convinced myself it would be fine.

It was ok, but never fine. Carol and Mary women took adequate care of Mom. She was always clean and never hungry. But she watched too much television and seemed more depressed than ever.

I asked Mary about activities, senior day care, anything. She said she had heard of a place, but couldn’t remember the full name. I found it searching the internet: “A Neighbor’s Place” run by Catholic Services of Macomb, was less than a mile from Mom’s home. I enrolled Mom and arranged for Carol and Mary to take her two days a week. I thought it odd that Mary didn’t have a list of such places at the ready, and even odder that I had to ask in the first place.

A few times when I dropped in for a visit or went to pick Mom up, I didn’t like the way Carol spoke about Mom in front of her – retelling something Mom did wrong as if she were a child who had to be reprimanded. When asked, Mom said Carol was “cross” with her. “But don’t say anything,” she pleaded. “I am tolerating her.”

When Paul, representative of the new agency we were considering, came to Mom’s house, I hung back, waiting to see how ­– if – he engaged Mom. I waited for him to tell us what kind of day we could expect Mom to have with his staff. Then I asked him about the women he employed to live with elderly people. He didn’t hesitate: “They see this as a calling, not a job,” he said.

Angels, I thought, like the nurses and volunteers of Seasons Hospice of Madison Heights who tended to Dad during his last days.

The next day Vivian came to meet Mom. As I sat with Paul in the kitchen signing papers, Vivian talked with Mom in the living room. I strained to listen, and this is what I heard: “They told me you’re a wonderful baker, that you make the best apple pies and banana cakes from scratch. I can’t wait to learn your secrets.” They both laughed.

Michigan has no licensure requirement for private duty in-home care. Caregivers are not required to have formal training. But the good ones do. They invest the time and cost to become Certified Nursing Assistants, Home Health Aides and Medical Assistants. Agencies aren’t required to do background checks on caregivers. But the good ones do. They do drug screening and a 50-state criminal record check.

Look for home care agencies that employ Certified Senior Advisors and are accredited by The Joint Commission, a national health care watchdog organization that audits hospitals and clinics to ensure the highest standards. BrightStar is one of the few that requires its franchised agencies to become accredited within a year of opening its doors.

Here’s the lesson: Don’t ever settle for care that you’re not absolutely over-the-top happy with. Ask tough questions in the first conversation. How do you screen your caregivers? Do you conduct background checks – in all 50 states? How long have your caregivers been with you? Who are the women – and men – who do this work? Why do they do it? Tell me about the person you think would be a good match for my mother.

Then wait and listen. What does the person on the other end of the line or across the table ask you about your loved one? Do they ask the right questions – ones that give them a real picture of who your mother is? Do get the feeling this person is really trying to understand your predicament or just pitching a service.

Does a nurse or other qualified medical person come to assess your mother or father and inspect the safety of the home? Do they suggest a customized daily activity plan? Do they promise to return often to check on things? What other aspects of care do they offer to make your life easier – to give you full and complete peace of mind?

Make notes and follow up. If the activity plan – or plan of care – is not being followed to your complete satisfaction, call the agency. If your loved one is merely “tolerating” her or his caregiver but not delighted, ask for a new one. If they don’t respond immediately, find another agency.
Reach out to the expert support services in your area for guidance.

The Area Agency on Aging 1-B (800.852.7795 or www.aaa1b.com) calls itself “your link to community resources” and for good reason. The seasoned call center operators can help you assess your situation and connect you with the appropriate agencies and services. They’ll also help you determine if you qualify for government assistance programs.

Services for Older Citizens in Grosse Pointe is dedicated to helping seniors “maintain their lives in independence and dignity.” The staff is compassionate, knowledgeable and always has time. The programs are creative: chair fitness classes; movies and pizza; armchair traveling. (313.882.9600 or www.socservices.org)

A Neighbor’s House in Clinton Township (586.412.8494) and Warren (586.759.8700) welcomes seniors for half or full day of activities. Their skilled team offers dementia care among many other valuable services. Transportation and lunch are also provided.

Rick Lemanski at Simasko, Simasko and Simasko of Mount Clemens (586.468.6793 or www.simaskolaw.com) can help you determine your father’s VA benefits eligibility or your mother’s surviving spouse benefits. The legal staff there can help with estate planning and other elder law issues.

Use these and other community resources. Remember, you’re not in this alone. And you shouldn’t tolerate anyone in this field who doesn’t view their work as a calling.

Only angels should ever get through your mother’s front door.