Q. I live 3000 miles away from my parents. My mother suffers from dementia and is cared for by my 83-year old father who has no help. Her short-term memory is fading; she does not change her clothes or bathe and wears only a light-weight sweater when she goes out in the cold. She no longer shops or cooks. My siblings who live close by ignore the situation.They just say, “Mother just won’t listen to us.” They have refused to hire a paid caregiver, although they can afford to help with the costs. What can I do to convince them to hire someone to help my mother and relieve my father of some of the responsibility and stress? Note: we all like my father more than my mother for a variety of reasons. L.J.
Family dynamics often come into play during a family problem or crisis. Let’s begin by trying to understand the resistance. Do you have any idea why your siblings are against hiring a paid caregiver? Is it money? Are they concerned your parents will drain their finances, which in turn may mean less inheritance? Over the years, what has been the relationship between your mother and your siblings?
Consider holding a family meeting, perhaps using a video conferencing tool such as Zoom. That meeting can elicit some thoughts about how each perceives the problem, some possible collective responsibilities and resources that can make a difference.
Assuming your mother has been properly diagnosed, no one can fundamentally change your mother’s behavior. If you try to modify or control the behaviors you likely will not be successful or will be met with resistance.
However, there are some tips published by the Family Caregiver Alliance that can help your father, and hopefully your siblings, respond to the challenge.
Try to accommodate the behavior, rather than control it: For example, if a person insists on sleeping on the floor, place a mattress on the floor for comfort. If a person refuses to wear a warm jacket in cold weather, consider whether a few lightweight sweaters would suffice and spend only a short time outdoors.
Behavior has a purpose: Those with dementia typically cannot tell us what they want and need. For example, when a dementia victim takes all of the clothes out of a closet, the Caregiver Alliance suggests the individual is fulfilling a need to be busy and productive.
Try different approaches: Behavior occurs for a reason and can be triggered by something a person did, has said or just the physical environment. To change behavior, try to disrupt the pattern and use a different strategy.
Each day may be different: Be flexible. Don’t assume what worked yesterday will necessarily work today. Many factors influence troubling behaviors. The natural progression of the disease changes behaviors and how to respond to them.
Your siblings might have more concern for your father than your mother: One strategy is to focus on your father’s welfare which may be the tipping point to convince your siblings to seek some help. Part of that strategy would be to increase their awareness of the risks caregiving can have on one’s physical and mental health. We know that family care givers frequently are depressed. Forty to 70 per cent have clinically significant symptoms. About a quarter to half of these caregivers meet the diagnostic criteria for major depression.
Older caregivers in particular put their own health at risk: They report not getting enough sleep, poor eating habits, lack of exercise and not stopping when ill. They also report ignoring their own health by postponing or avoiding medical appointments for themselves. Studies confirm that caregivers also are at risk for depression and excessive use of alcohol, tobacco, and other drugs.
Fortunately there are some documented coping strategies that may be relevant for your father:
Seek and accept help. This may be the most important. Be realistic about the demands, responsibilities and your level of fatigue.
Use stress reduction techniques such as prayer, mediation, yoga and tai chi.
Get enough rest and good nutrition.
Exercise, even if it’s only 10 minutes a day. Go for a walk around the block.
Take some time off and a vacation from guilt.
Engage in pleasant nurturing activities such as reading a good book, listening to music or taking a warm bath.
Seek out and join a support group for caregivers and family members.
For more resources in the Los Angeles area go to Alzheimer’s, Greater Los Angeles at https://www.alzgla.org/. To find an Alzheimer’s Association in another geographic area, see https://www.alz.org and type your zip code and state.
L.J., Thank you for your important question. And best wishes for success in getting the help that is needed.