The day-to-day tasks of caregiving for someone with Alzheimer’s can be so challenging that the toughest, long-term decisions are put off until a crisis occurs.
“There’s so much physical and emotional work in progress that it’s hard to set aside time for proper planning,” says Daniel Kuhn, MSW, Community Educator at Rainbow Hospice and Palliative Care in Mt. Prospect, Illinois, and author of Alzheimer’s Early Stages (Hunter House, 2013). “So, unfortunately, a lot of caregivers have a reactive approach when a crisis comes up instead of a proactive one.”
Decisions as a Caregiver
Below are some of the hardest decisions you may have to make as a caregiver — and the ways to approach and implement them.
- Taking the car keys.
Enlist your loved one’s health care provider in this decision, says Kuhn: “Driving is a sign of independence and autonomy. So, taking away the car keys can be devastating to your loved one’s ego.” It’s your responsibility to let the doctor know your concerns about your loved one’s driving, says Kuhn, but let the decision come from the doctor.
- Moving to round-the-clock care.
Beyond the early stages, people with Alzheimer’s should not be left alone, says Kuhn. The issues include personal safety, cooking dangers, taking too much or too little medication, and wandering. If you can’t be with your loved one 24/7, you will have to introduce a helper into her life.
“Any helper should be seen as a companion who is doing things with your loved one, not for her,” says Kuhn. “The failures come when someone comes in and says ‘I’m taking charge.’ That creates stress and threatens self-esteem and autonomy.”
- Assuming financial and medical responsibility.
Do this early when your loved one can still decide who in the family she wants assuming the responsibility, says Kuhn: “If you don’t do it early, that can lead to financial and legal battles.”
Every state has its own forms you can print from the internet, says Kuhn. You can also print a legal form called “Five Wishes” from www.agingwithdignity.org.
- Moving your loved one to an Alzheimer’s facility.
Start looking for a facility early, doing exploratory visits, finding out what the costs are and what signs of quality you should look for, says Kuhn: “Many people wait until there is a medical crisis that takes their loved one to a hospital, and then they have to decide on a place within 72 hours. You need to have plans in place before that happens.”
- Stopping Alzheimer’s medications.
Again, ask your loved one’s health care provider about when this should happen, says Kuhn: “There’s no evidence that the medications have benefits for those in the final stages of Alzheimer’s.”
[Subhed] Denial May Hide Red Flags
The difficulty of accepting a love one’s diagnosis of Alzheimer’s can lead to denial: No one is eager to face what lies ahead. And some tough decisions — such as taking away the car keys, taking on financial and legal responsibilities, and perhaps hardest of all, placing a loved on a Alzheimer’s facility — can mean huge changes not just for the loved one but for you and other family members.
“Some tough decisions can be fraught with complications,” says Kuhn. “For instance, if your loved one has to give up her car keys, you may then have to provide transportation or relocate your loved one. Some caregivers just don’t want to break that news.”
One way to ease the burden of tough decisions is to make them early, when your loved one can still be involved. Another is to involve your loved one’s health care provider. “A health care provider can couch some tough decisions as medical ones, not personal or emotional ones,” says Kuhn. “That can shield the caregiver from fallout that is inevitable.”