He has Alzheimer’s disease but she refuses to accept help caring for him: What is there to do?
Q. My father-in-law, who suffers from Alzheimer’s disease, needs care and can do little for himself. My mother-in-law who is 82 years old takes care of all of his needs and rarely takes any time for herself. Much to my frustration, she refuses to get any help. I am more worried about her than my father-in-law. Do you have any suggestions on what to do? I also need to have a better understanding of the disease. M.S.
You and your mother-in-law are facing a dilemma.
Let’s start with a few facts: Alzheimer’s disease is a degenerative brain disease affecting over five million Americans. Caused by damaged or destroyed nerve cells, the disease gets worse with time. It is the sixth leading cause of death in the U.S., often beginning 20 years before the appearance of any symptoms such as memory loss and language problems. When the symptoms increase and interfere with what is called activities of daily living such as walking, bathing, eating or dressing, the individual is said to have dementia due to Alzheimer’s disease, according to the 2019 report, “Alzheimer’s disease: Facts and Figures.”
In the early stages of the disease, the brain initially compensates for brain changes that enable individuals to continue to function normally for many years. Some cases begin with mild cognitive impairment (MCI) which might include some memory loss, language problems or losing focus, none interfering with daily living activities. A recent study found that 15 percent of those 65 and older with MCI developed dementia in a five-year follow-up.
There is no agreed-upon cause or cure. And the final stage is not a good ending. Individuals typically are bed-bound and require around the clock care; the disease ultimately is fatal. Although we do not know the timeframe of progression, we know the trajectory and outcome. So, it is important to prepare.
Caregivers are at risk. A study found that caregivers of chronically ill patients die four to eight years earlier than they would have if they had not been a caregiver. It may seem odd that they would not want help and relief if for no other reason than to preserve their own health and even life. This reasoning would apply to a completely rational situation. Caring for a chronically ill loved one involves more than logic.
Here are some reasons for the resistance as referenced in multiple Alzheimer’s resources.
The instinct to protect: Caregivers may know that they cannot restore their loved one to health yet they want to be the person who provides care and safeguards their well-being.
Feeling guilty: Caregivers may feel it is their responsibility to take care of their loved one. If caregivers feel they are not living up to their commitment and responsibility, they may feel guilty.
Fearing a stranger: We hear horror stories about caregivers from families who had a bad experience with hired care. Consequently, a family caregiver may feel it’s his or her duty to protect the loved one and personally monitor all care.
Valuing privacy: Some people find their homes a safe space and consider family happenings personal. A hired caregiver, churchgoer, neighbor or sibling may make the care provider uncomfortable opening the home and sharing information with outsiders.
Pride: Others may feel that they always have been able to care for themselves and needed to ask for help. Consequently, they take on the caregiving challenge the same ways they confronted challenges throughout their lives.
Financial concerns: For many families, outside caregivers are expensive. Typically, our medical system does not pay for in-home care although some programs support such care through the VA, Medicare, Medicaid as well as long-term-care insurance.
The big question is what to do? First, try to understand the reason for the reluctance. If it’s financial, perhaps family members can help. If it’s fearing a stranger, a family member might assist in getting references, hiring and monitoring the care provider. Counseling from a trusted outside person such as clergy or a therapist might be useful. Also, consider a support group for yourself and your mother-in-law.
For more information, contact Alzheimer’s Greater Los Angeles at www.alzheimersla.org or call at 844-435-7529 (844.HELP.ALZ). They provide care counseling and other resources.
M.S., Thank you for your important questions. Best wishes in finding the support that your mother-in-law needs. Take care and stay safe and well.
Helen Dennis is a nationally recognized leader on issues of aging, employment and the new retirement with academic, corporate and nonprofit experience. Contact Helen with your questions and comments at Helendenn@gmail.com. Visit Helen at HelenMdennis.com and follow her on facebook.com/SuccessfulagingCommunity