By Jean Wentz, Production Assistant
November is National Family Caregivers Month, with the theme focusing on respite. I’m a caregiver one day a week for Colette Kolstad, a woman in the advanced stages of early-onset Alzheimer’s. She celebrated her 67th birthday last week. Ten years ago she was forced to retire from a thriving and successful career teaching, coaching, and being the first female athletic director at Preble High School in Green Bay. I didn’t know her then. I’ve only been helping with her care for the last two years. By the time I came on board through the caregiving agency, she had already had the seizures that robbed her of most of her ability to talk, walk, and participate in meaningful activities.
Her husband, Jerry Olbrich, whom she happened upon relatively late in life, is devoted to her. He has been, and still is, her primary caregiver. They have no children. With the high level of care that she needs, many people are amazed that he has not put her into a skilled care facility.
Early on, Jerry took advantage of any resources he could find that would not only provide the best care for his wife, but would give him some respite as well. Shortly after diagnosis, he enrolled her in an adult day program at Curative Connections three days a week. The specially-trained staff there led brain-stimulating activities specifically for people in the early stages of Alzheimer’s and other dementias. She made new friends, got to sing, dance, do crafts, and a host of other activities. This gave Jerry the freedom to run errands, go to appointments, do housework and shopping, and sneak in a few rounds of golf.
Until…he himself needed a caregiver. In 2011, he had to have emergency quadruple bypass surgery. On the heels of that, Colette had the seizures that ended most of her ability to do anything for herself. That’s when he called in Home Instead Senior Care for round-the-clock care for Colette while he convalesced. After his recovery, he kept them on to help him care for her the two days of the week that she wasn’t at the adult day program, and for half days on the weekends.
Although this may sound like a lot of help, if you’ve ever been a primary caregiver, you realize that still leaves seven evenings and nights of solo care. This includes meals, toileting, dressing for bed, and getting to (and staying in) bed. And three mornings of solo care, including getting out of bed, toileting, washing and dressing, and breakfast. Not to mention two afternoons to fill.
Recently, Jerry finally brought himself to make the call to hospice care to see what they might be able to offer. They have been sending a CNA three mornings a week to help get Colette out of bed and ready for the adult day center. They also provide supplies such as disposable underwear, absorbent pads, wipes, creams, rubber gloves, and even some prescription medications. All at no charge to him – – covered by Medicare.
Which brings me to an often unspoken conundrum of caregiving: the expense. After the initial emotional roller-coaster of an Alzheimer’s diagnosis, the prospect of not only lost income, but paying for care, can be just as frightening. In the United States, the cost of living in a skilled care facility is at least $225 per day, depending on the facility and where you live.
Deciding to care for someone at home does not mean you have to do it alone. Caregiving is emotionally, physically, mentally, and spiritually trying. Burn-out is high. If you think you can do it alone in order to save money, you are not being fair to yourself or the person you’re caring for. You owe it to both of you to seek out and utilize all the resources available, of which there are many. None of them will be as good (or as cheap) as never having gotten Alzheimer’s disease in the first place, but they will offer incredible support and be worth every nickel you can scrape together. You’ll probably make some friends along the way, too.
Although I didn’t know Colette before her seizures, I do get glimpses of her former self. I’m often treated to a beaming smile when I say good morning. Sometimes she laughs at my dumb jokes. She never criticizes my singing. When we’re together, I am reminded that all we have for certain is this moment. There is no frantic scurrying or hurrying to get this or that done on time. There is only now. I hold her hand and we watch the world go by. I know she can’t possibly remember me from week to week, but I hope that something in her heart knows “friend.”
And Jerry? He has adopted the motto, “Shit happens!” While he tries to inject a sense of humor into daily bad situations, his underlying sadness is apparent. He had high hopes when they started on this journey that if Colette could live five or six years, that they could beat the disease. Now, however, seven years after diagnosis, one failed trial drug, two seizures, and no real possibility of a cure/treatment in the immediate future, he has pretty much lost any hope of getting his wife back. He has resigned himself to accepting the fact that, “I can only give my wife the best care possible and slowly watch her die.”
Just because Colette is unable to tell us, it is impossible for anyone to know what she is still taking in. Jerry still takes her to mass every Sunday. They go regularly to local musical theater productions, summer outdoor concerts, out to eat, to parties with family and friends, and for walks around the neighborhood. They have not let the disease rob them of a full life. Which reminds me of their other motto, displayed on a plaque in their kitchen, and also engraved on a bracelet Colette wears every day: “Never, Never, Never Give Up.”