Care partners for persons living with dementia need a back-up plan. There needs to be someone who can temporarily or permanently care for the person living with dementia. Best to plan for the situation now, rather than scramble under difficult situations.
Care partners are familiar with medical emergencies involving their loved one. But what if the care partner suddenly has a heart attack? This situation is becoming more common, especially among spousal care partners. The spousal care partner often ignores his or her own health needs because of the all-consuming nature of caregiver. “I can’t deal with one more thing right now.” But then the care partner’s body reaches a limit, and the health care issue takes center stage.
One creative care partner placed signs throughout his house:
To Emergency Workers (Fire, Police, Paramedics):
My wife has dementia and can not be left here alone. She either comes with me to the hospital or stays with one of these people:
Kathy (daughter): 205-555-3371
Melanie Roberts (neighbor): 205-555-1690
He placed these signs on the refrigerator, over his bed, and on the front door inside of the porch. He even provided this information to his local police precinct and fire house.
Urgent Healthcare Needs
It breaks my heart seeing care partners dragging oxygen tanks into the clinic. I know of care partners who have multiple physical problems but continue to provide intense, hands-on care to their loved ones living with dementia. These care partners delay important tests and procedures. If you recognize yourself in this blog, please start putting together a respite team. If you have access to in-home care through your state’s Medicaid program, sign up and start using it. Reach out to your families, be they biological, by choice, or by faith. Please do not assume that others will say “no.” If you know of people in this predicament, offer help. It can be as basic as going with the care partner to the appointment and keeping the person living with dementia occupied.
A power of attorney pertains to financial matters, period. Too many people believe that a “power of attorney” makes them legal guardians for people living with dementia. No, it does not. Most hospitals and long-term care facilities do not demand proof when a care partner announces that he or she is the decision-maker. However, if two or more individuals assert that they are the decision-makers and the decisions are different, problems happen. It is best early in the dementia journey to have a living will and healthcare proxy. The living will describes what life-saving measures the person living with dementia is willing to accept and under what circumstances. The healthcare proxy identifies the MEDICAL decision-maker. Honestly, everyone should have a living will and healthcare proxy.
I asked about a living will and healthcare proxy while working with a woman with mild dementia. She shrugged and simply said, “My children will make the best decision when the time comes. I trust them.” Her two adult daughters looked at her with pained expressions. This was not helpful. I gently explained that she was going to cause her daughters guilt unless we talked about some options today. We did. I think more clinicians need to be a bit assertive in these types of situations. Click here for more information on advance care planning.
Care partners seem to assume that they will outlive the person living with dementia. Some care partners go to great lengths to minimize the seriousness of the situations. These care partners do not want to burden adult children. Or, they want to preserve the dignity of the person living with dementia by hiding deficits or care needs. These desires are understandable. But one day, the care partner dies and the remaining family members are unprepared for the amount of care the survivor requires. In fact, the adult children may believe Dad is “just a little forgetful” and they unwittingly place him in an unsafe situation by leaving him alone with no supervision or support. Meanwhile, Dad has no ability to prepare meals or even dress appropriately. Utilities are shut off and a neighbor discovers Dad collapsed outside, dehydrated and covered in filth.
Care partners should be having honest conversations now about the needs of the person living with dementia. Just like parents select individuals to raise their children if the unthinkable happens, so must care partners select alternative caregivers. If there is no one to take over, then the care partner should make arrangements with a memory care facility or nursing home. This sounds cold, but if adult protective services becomes involved, placement will happen…at the first available facility, not the preferred facility.
All of us prepare, to some extent, for the unexpected and unwelcome. Dementia caregiving is no exception.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.