When A Parent or Loved One Resists or Refuses Care
There are many families today dealing with aging parents or loved ones. They generally feel like a little rowboat in the middle of the ocean being thrashed around by waves, hoping and praying for calm seas and sunny skies with navigation to get them to a safe harbor.
There are many different reasons a family is put in the situation of needing to hire outside help to provide care for a loved one in the home. As a rule, families seek care as a result of slowly emerging health, safety, and aging issues, or the family is thrust into the eddy of finding care as a result of a sudden turn in a loved one’s physical health or mental health condition.
Having a conversation with a loved one about hiring care in the home is vastly different when the process takes place over time, as opposed to when a sudden change necessitates immediate decisions. When it is planned, family members and friends can broach the subject patiently to test the waters and determine a loved one’s receptiveness. An absolute “no” one day may be replaced by “maybe” a month or two later, and acceptance two or three months after that. Time is a luxury for addressing and readdressing your loved one’s needs.
When the need for care arises suddenly, families find themselves in different and often murky waters. Rather than thoughtful conversations about the options, a sense of urgency can cause family members and friends to become impatient and frustrated with a loved one who resists or refuses care. How does a family move forward if a loved one insists they are capable of doing it themselves or, possibly worse still, insists that any and all care be provided by family members?
Under these or similar circumstances, a plan or strategy will be critical, but it is absolutely possible to move from point A to point B in a loving way that doesn’t jeopardize relationships or compromise the level of care that is required.
Set Your Coordinates
The first step in moving forward is communicating with other people involved to set the coordinates for what you hope to achieve. Whether that includes siblings, other relatives, health professionals, or friends, you should strive to be united in your approach. Communicate with everyone involved, decide on a plan or strategy, and move forward as a team that is rowing in the same direction. The “coordinates” are essentially to assist in hiring care for your parent or loved one.
Let Your Loved One Steer the Ship
Aging individuals who are confronted with needing assistance with tasks for daily living can experience a whole host of emotions and fears. If there is one single concern that consistently arises people in this situation, it is the fear of losing their independence. While they anticipate and expect assistance when they are in a hospital or transitional care facility, they forget that the same level of care is needed at home.
While it will be important for family members to provide guidance, decision-making control should stay in the hands of your parent or loved one. When there are signs of dementia or diminished mental health, this will be more difficult, but it should still be done. Not allowing a parent or loved one to make decisions will only lead to increased resistance and resentment and may damage family relationships. Avoid the temptation to simply take control of the situation.
Leaving the decision-making authority in the hands of a parent or loved one does not mean stepping out of the boat. Instead, it shifts the role of family members from captain to crew. The goal is to lead your parent or loved one to a self-realization of what he or she needs. You need to allow your parent or loved one the independence and autonomy to make these decisions.
Try to remember that your parent or loved one wants to do things for themselves. It may be clear to others that this isn’t possible, but it is not always clear to your parent or loved one. One way to lead a parent or loved one to a realization is to make a list. Provide your parent or loved one with a notepad or notebook. Explain that it should be used to make a list of tasks the he or she either wants help with or is simply incapable of doing alone. Each time a family member assists with a task, particularly if your parent or loved one specifically asks for assistance, recommend that it be put on the list. If possible, your parent or loved one should be writing it down, not someone else.
This is going to be extremely effective if your parent or loved one has mobility issues and requires a lot of assistance performing daily tasks. If your parent or loved one does not have mobility issues and is adamant about being self-sufficient, watch for circumstances that raise safety issues or tasks where your parent or loved one is struggling to do it alone and talk about it immediately. Point out the safety risks. Tell them you noticed that they had a bit of a hard time performing the task. Ask your parent or loved one if they would like to add it to the list.
Each time a task is added to the list, it allows your parent or loved one to recognize in a subtle way that he or she can’t do it alone, and actually puts it in black and white. At the same time, it empowers your parent or loved one to decide for himself or herself that they need or want assistance. The list may end up including help with grooming, dressing, bathing, toileting, mobility, transportation, and preparing meals. It may also include light housekeeping and laundry.
After several days spent creating a list, sit down with your parent or loved one as a family or group to review it. It will be important to refer to the list as belonging to your parent or loved one. It will also be very important to make is clear your parent or loved one is running the show. Ask your parent or loved one to read from the list the tasks he or she has identified as tasks where they need assistance. Explain that you would like your parent or loved one to tell YOU what assistance he or she thinks they will need or want. Avoid trying to make the choices for your parent or loved one. Make recommendations using examples of when you knew assistance was necessary. The list is the guide, and hopefully the reality of the list will keep your parent or loved one from refusing assistance.
Plotting an Alternative Course
On the OFF chance your parent or loved one added nothing to the list, continues to refuse assistance, and care continues to be provided by family members and friends, ask for permission to let someone come in to help YOU. Since you are providing all the care, it is an indirect way to get an outsider into the home. Once a person is actually coming in, ease into this person into the routine. Have them do housekeeping, laundry, or meal preparation. Allow your parent or loved one to get to know the person and get used to someone other than a family member being there. After a day or two, intermix the outside caregiver’s work around the home with providing assistance to your parent or loved one. This allows for a natural shift and adjustment for your parent or loved one, and hopefully a transition from family care to outside care.
Spotting the Lighthouse
There are many ways to approach a situation with a parent or loved one who resists or refuses care. The discussion here is focused solely on the fear of losing independence, yet there are many other reasons senior resist or refuse outside care. Communication is essential for identifying, discussing and resolving these issues. I recently attended a lecture where the speaker quoted a care professional as saying “We want safety for our parents but independence for ourselves.” Never lose sight of your parent or loved one’s autonomy and need for independence. Recognizing, acknowledging, and addressing a parent or loved one’s fears lights the way for identifying care solutions that meets the needs of everyone involved.
© 2015 CareAparent™
All rights reserved. No part or portion of this article can be reprinted without the express written permission of the CareAparent.™
Lisa McLeod Lofquist is an attorney in St. Paul, Minnesota and is the co-founder and President of CareAparent™, a home care agency for seniors. Contact Lisa by email at Lisa.Lofquist@CareAparent.com.