Since he’s in home hospice, a nurse visits twice a week to check in and clean his catheter. Another healthcare professional visits three times a week to bathe him. Her mom gets out of the house twice a week when a retired nurse’s assistant comes to stay with Calandra’s dad for 5 hours. During this time, she shops, runs errands, and goes to her own doctors’ appointments.
In spousal care situations like the one Calandra’s parents face, Meuser said the healthy parent can put their own well-being in harm, and that caregivers are at increased risk for anxiety and depression.
“Caregiving is not only the time it takes to care and the act it takes to care, but there is real psychic stress with respect to witnessing change and decline and the prospect of impending death,” said Meuser. “Often times [spouses who are caregivers] will carry a very heavy load and not share with their adult children how heavy that load is. The adult children only learn when there is a real collapse of the caregiver parent, and then they end up in the situation where they have two people needing help and care.”
“Many times, the visits are more for me and my mother because she ne interaction with people who are responsive and engaging. She’s secluded and suffering in her own ways. Sometimes my siblings and I think she’s being robbed of the good years she has left,” Calandra said.
Drew said giving a caregiver a break like this is the best way you can help someone caring for a person with Alzheimer’s. Also, taking on small chores such as cleaning, doing laundry, paying bills, providing lawn care, servicing the car, and picking up groceries can help in big ways.
“It’s not about barking orders, but saying [something like], ‘Mom, clearly there are things that you do that only you can do, but are there things that I can do that would be helpful or it doesn’t matter who does them as long as they get done?’” said Drew.
Meuser agreed, noting that sometimes a more extended break is needed, such as one that can be achieved by putting a loved one in an adult daycare periodically.
“Let the person know how much you appreciate what they’re doing and the fact that they’re doing it is such a gift to the person with the disease and to the family. Caregivers feel isolated and that whatever they do they are failing, so [showing] appreciation… and supporting what they’re doing rather than criticizing it means a lot,” she said.
“I miss talking to my dad so much — about my life, and silly things and just everything. But I know he is not who he used to be,” Calandra said. “It helps to focus on the time I have left with my mom.”
Still, she admits it can be hard to focus on one parent over the other. While there can be guilt around spending time with a healthy parent when the other parent is ill, Drew says think about it in terms of human connection.
“We all need human connection in one way or another and helping people find connection that is meaningful to them and giving them the breaks that are helpful to them is what really matters,” said Drew.
For information about helping a caregiver, the Alzheimer’s Association offers around-the-clock support through its online community and hotline (800-272-3900) as well as face-to-face support groups around the country.
“When it comes down to it, it’s still the family that’s providing the bulk of the care and carrying the heaviest burden of this disease, and that won’t change until we find a way to treat Alzheimer’s,” Meuser said. “It requires constant messaging to support families to realize that there are structures to help you and to not let it overwhelm you to the point where you can’t reach out.”
Cathy Cassata is a freelance writer who specializes in stories about health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.