Those stories were frustrating for me to hear but even worse were the stories people told about care giving that even terrific documents do not really address.
The documents don’t help people deal with uncooperative seniors. This is a particularly difficult issue when cognitive decline is involved. In my own family, as my dad’s dementia got worse, he would not do many things he was supposed to do. For instance, when he passed, we found lots of pills he stashed in weird places rather than swallowing them.
My mom was his primary caregiver, and it took a toll on her. By the time dad died, she needed a new hip. It took two and a half years for her to get the surgery. Some of the delay was not her doing but much of it was because she was not doing things she needed to do. She did not want any of her children to go to some of her medical appointments and she often would deny she had any health issues or that she wasn’t following the doctor’s recommendations.
It can be extremely difficult to try to help someone that won’t help themselves. As I can attest, the helpers need help helping. When I was particularly frustrated, I reached out for some tips from my friend Carolyn McClanahan, MD, CFP, who has been on a mission to help financial planners help their clients with these matters for a couple of decades now. She regularly writes and speaks on the intersection of health and personal finance. You can find a compendium of her columns and more information at www.carolynmcclanahan.com
Carolyn started by imparting to me the importance of understanding what is actually going on medically and getting the information directly from the medical personnel involved is the best way to get good information. Patients don’t retain much of what they are told, it can be complicated and even those that try to convey information accurately can have trouble doing so.
Understanding why a care receiver might be uncooperative is helpful. The person that needs to address the underlying issue is the named health-care surrogate. If there is no surrogate, one needs to be put in place as soon as possible. This is usually a family member, typically one of the care receiver’s adult children.
With respect to not wanting anyone in medical appointments, a suggested approach for the surrogate is to basically say to the parent, “I really love you and want to make sure we all understand what is going on with your health care. In my experience, health-care conversations can be complicated, and by me being there, it reduces the chance of miscommunication. Can you please share with me why you don’t want me in all of your appointments?”
The surrogate should expect some common answers. For instance, some say they don’t want to burden their child. Others feel like the children will take over and others are embarrassed that they have problems they can’t fix or control. Often, if that reason is addressed, the care receiver will be more open to help, and the surrogate can get the information that is needed to better handle matters.
Carolyn offered a few examples:
“Mom, helping you isn’t a burden at all. It is a much bigger burden worrying about you and not knowing what is going on with you.”
“Mom, you are totally in charge of your health decisions. My bigger concern is understanding what is going on so I can help you if something ever happens where you can’t make decisions for yourself.”