It’s been a year and you have found yourself in a new role. You are working forty hours a week or more, trying to raise tenacious teenage boys, and now your parents are dependent upon you. Despite your overwhelming duties, you consistently juggle it all. Unfortunately, it’s beginning to take a toll on you.
You suggest hiring in-home assistants, but your mother who is leery of new visitors, objects. Without considering your perspective, she reminds you that you have been able to help in the past, and insists that you can continue to help her. Not only that, your father continues to take on tough projects at home despite his declining health. He declares confidently that he will be okay and pushes you away as you stress your concern. Your grandmother who is in the beginning stages of Alzheimer’s disease has begun wandering from the house in in the middle of the night. She refuses to move into an assisted living facility because those “old people” are depressing.
This is familiar experience for family members who have found themselves in their new role as caregiver to their elderly loved ones. Sadly, there is nothing harder than caring for a love one who refuses assistance. According to Donna Cohen, Ph.D, a clinical psychologist and author of The Loss of Self: A Family Resource for the Care of Alzheimer’s Disease and Related Disorders., “this is one of the most common and difficult caregiving challenges that adult kids face.”
You realize that your constant pressures to get help are not working and wonder if there is a better way. Cohen, says “Many older people see themselves as proud survivors. They think ‘I’ve been through good times and bad, so I’ll be fine on my own.’ Plus, they don’t believe their children understand the physical and emotional toll of age-related declines.” As a caregiver, you must take a step back and understand your loved one’s fears about aging and giving up independence.
The most difficult love one to work with is one who is in their primary stages of cognitive decline. According to Cohen, “Your angry father or agitated mother is aware of this miserable change in their brain they don’t quite understand.” As a caregiver you should acknowledge this and calmly help them cope with their fear.
Many caregivers experience significant frustrations because your role is confusing. You experience anger because your increased workload is taking a toll on your wellbeing, no matter how much you hold your head up high. You feel guilty when you take time for yourself. According, Barbara Kane, co-author of Coping with Your Difficult Older Parent: A Guide for Stressed-Out Children, “You may revert to the same coping mechanisms you had during adolescent power struggles with your parent — screaming, yelling or running out of the room,” she says. “You need to understand what parental behaviors trigger your emotional response and realize you have other choices.”
Elizabeth Pope, of Care.com, offers nine strategies to help you overcome the objections of a resolute loved one:
1. Begin Planning Now. Many times, familial conversations take on a theoretical tone before serious challenges occur. There is a lot of “should do this or that” and might do this or that”. They go through the motions of discussing care planning, but those motions generally do not result in concrete and actionable steps to take when serious issues arise. According Pope, “Look for opportunities to ask questions like, ‘Mom, where do you see yourself getting older?’ or ‘How would you feel about hiring a housekeeper or driver so you could stay home?’” These are excellent questions because they yield concrete answers and actionable results. If mom says that she sees herself living at home, you know to begin setting up systems and resources that will allow this.
2. Keep your patience. Mary Stehle, LCSW, senior care counselor at Care.com suggests, asking open-ended questions and offer your loved one time to respond. You can say, “Mom, how do you feel about the assistance the aides are providing?” The question should yield more than just a yes or no. It is important to stay focused on the subject because your loved one might get off track, repeat things over again, and not add significant details to your questions.
3. Ask for details. If your loved one is only touching the surface of your question, do not be afraid to go a little deeper and ask for more detail. If you mom, responds to your question, with “I do not like or want their help,” consider asking questions to determine why your she reacts negatively to an assistant’s help. Your question can contain possible reasons such as “Is it about a lack of privacy, prior abuse, or giving your trust to a stranger?” Caregivers, must work to build trust. Begin by listening with empathy. As suggested by Pope, attempt to try to validate first, rather than deny their opinions.
4. Give them options. Allow your loved one to be a part of the care planning process. Let your mother take part in interviewing new assistants and planning her day, suggests Mary Stehle. Let her maintain as much independence as possible. For example, let you your mother choose her social outings. Also, try modifying your terminology by excluding certain words such as “help”, “care”, and “health aide” and replacing them with “escort” and “assist” and “companion”. Use terminology that demonstrates they are getting 5-star concierge treatment versus simply help.
5. Know your options. In Senior Lifestyle Concierge’s, Pyramid of Care, there are three levels of caregiver assistance. On the primary level there is the immediate family. On the secondary level, there are the friends and neighbors. On the tertiary level, there are community resources. Assistance typically proceeds in the primary to tertiary sequence, and it is pertinent that caregivers form their team from all three levels. According to Cohen, “Sometimes it’s easier for a parent to talk to a professional rather than a family member.” You have to know who your resources are on each level and what resources they can provide for you and your love one. It is unfortunate, but at times your loved one will not value your opinion. It will be necessary for other resources to make appropriate suggestions to the elder.
6. Prioritize problems. Make a list. In the first column, write loved one’s challenges. In the second column, write down the steps you’ve already taken. In the third column write down where to get more help. Next, rate each challenge. “If you don’t categorize your efforts, caregiving becomes this huge weight,” says Cohen. As a suggestion, if any challenge does not have a corresponding action taken, make those top priorities, followed by those that can get accomplished efficiently. Writing down challenges with subsequent actions and rating its necessity will bring clarity and decreased stress to your life.
7. Less is best. Providing too much information will, at times, become overwhelming for your loved one. This confusion will lead them to resist your efforts. Stehle suggests, “You could let your parent know the aide is someone very helpful who can take your father on walks, fix him meals, and help him throughout the day. You don’t need to explain every aspect of care the aide will provide before the relationship has been formed. This may make your loved one feel less threatened.”
8. Take it slow. Gradually introduce support systems. By totally disappearing out of the picture after all the prior support you have provided, this can leave your loved on feeling abandoned. Faced with the need to learn someone knew, your loved one may not quickly open up to a stranger. This increases the likelihood of them refusing support. Kane suggests starting with short home visits, gradually introducing more tasks. This does to things it helps the new caregiver assimilate into the scene and determine if this is a job he or she wants to take on. Second, your loved one becomes more familiar with the assistant as you slowly transition out of full time care.
9. Accept your limits. Know when to step back. If your well-being is continually compromised and you find your relationship with your parent becoming transactional, pull back as long your loved ones is not endangering themselves or others. It might be hard to do, but you too must focus on optimal living. Part of helping loved ones live independently is letting them make their own choices, says Cohen. “You can’t be at your parent’s side all the time. Bad things can happen, and you can’t prevent them,” she says. “You need to accept limits on what you can accomplish and not feel guilty.”
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