By Deb Risden
My mother turned 100 in May 2024. She lived independently in a 55-plus community and enjoyed good physical health. However, she had developed dementia, which took us on a long and twisted journey through the health care and legal systems.
I learned a lot about finding appropriate care, the uniqueness of every individual who has health challenges of all kinds and, in our case, the inconsistencies of dementia.
One of those challenges was finding a facility that would take my mother, as she had a pending Medicaid application. Most facilities would not take her unless she paid privately for one year. That was a head-scratcher. If someone needs to go on Medicaid because they have no funds, then how are they supposed to pay upward of $90,000 for a year of care? I worked with CarePatrol, a free service that helps families find the right care for their loved ones, to find a facility that would take my mother pending Medicaid approval.
With numerous health care challenges, I learned a lot about what I could and could not do legally for my mother based on old legal documents she had in place. I was grateful she had something for me to work with.
In a University of Michigan National Poll on Healthy Aging conducted in April 2021, less than half (46%) of adults age 50 to 80 reported having a written medical power of attorney or advance directive in place; 59% had spoken with someone about the medical treatment they want if they should become seriously ill.
Once I became aware that my mother’s legal documents were complicated and restrictive, I sought advice from attorney Lynn M. Vanatta Perry, Juris Doctor, in Colorado Springs.
Vanatta Perry’s review of the documents indicated my mother’s medical power of attorney stipulated that her “agent” (me) could not make medical decisions for her unless two physicians wrote a letter stating she was incapacitated. In order to get those letters, there would need to be extensive testing and evaluations. There are long wait times for those appointments and her cognitive issues were escalating, however, they were inconsistent. She would be evaluated by medical professionals and found to not have cognitive issues. I was left feeling helpless in trying to do the right thing but having too many legal hoops to jump through.
In the back of my mind during this difficult process was the burning question: What do I need to do to ensure that my daughter does not have to go through this?
Vanatta Perry said having the right legal documents in place ahead of time is important and necessary, but there is so much more.
It was hard to see what was happening to my mother and frustrating that she did not recognize it and agree to getting help. Vanatta Perry said, “What you kept running into is that she was not making good decisions, but she was not totally incapacitated to the point that you could step in and take over that role. We have to step back and support, even though it can break our hearts. It’s about respect.”
When an older person is no longer able to make decisions, it is good to have a financial power of attorney and a will, but the most important document is a comprehensive medical power of attorney that is immediately effective. Vanatta Perry said, “Even if you sign a POA that says it’s effective immediately, that doesn’t mean the agent named in the POA is immediately in charge. It just means there are no other hoops to jump through for a designated agent to step in and help you. It’s important to know that under the law, nobody can step in and make decisions for you until you cannot make the decision for yourself.
“There are so many different decisions that fall into the medical world. Sometimes people can make some of them but not others. Most of us don’t go from completely lucid to totally incapacitated.”
Vanatta Perry said sometimes there are situations in which a person needs to be in a skilled nursing facility because of a health crisis but then improves and their medical POA thinks it’s easier to stay there. She said people can be reevaluated at that point and maybe moved to assisted living or even home. An ombudsman who works within skilled nursing facilities or adult protective services are good sources because, Vanetta Perry said, “They are there to help people who are not being allowed to be as independent as they are able to be.”
A financial POA is also a good document to have completed, Vanetta Perry said. However, she said there is certain language that must be included in order to be accepted by state agencies, such as for Medicaid applications. “It’s a good idea to work with an experienced attorney even though it can be expensive because it can save time and money in the future,” she said.
Next is a will. Vanetta Perry said a will is “just about the stuff.” She said it is good to have things spelled out ahead of time. “People are looking at your assets and relationships right after your death when the emotions are running high. People are not thinking clearly. Old baggage suddenly gets opened, and all sorts of ghouls and nasty things pop out.” Having everything in order ahead of time, including a list of possessions that people might want, can go a long way in sorting things out easily after a death, she said.
Having the right paperwork is important, and talking about things ahead of time is helpful in making decisions. Vanatta Perry suggests going through the 5 Wishes workbook together (https://www.fivewishes.org) and completing a Medical Orders for Scope of Treatment (MOST) form.
Eventually, my mother was diagnosed with dementia by a hospital physician, and I was able to move her into an assisted living facility that also has memory care services. It wasn’t easy. I typed a summary of her “story” from the past few months so she could read it when she was cognitively able to do so. She said she didn’t remember any of her behaviors and hospital visits, and it made her sad. Up until this time, she had an amazing memory along with cognitive and physical capacity. I told her that she was no longer able to live by herself because she wasn’t safe, and she accepted that. The assisted living facility accepted the legal documents I had along with her consent.
My mother passed away two weeks after her move to assisted living. The death certificate states her death was due to complications of dementia.
I learned how important the right documents are for my daughter when the time comes, and I’m working on the biggest challenge — talking about it.
Resources:
Lynn Vanatta Perry, JD, INHC, 719-636-2003, is an attorney in Colorado Springs whose professional focus is on elder law and guardianships, estate planning and families with disabilities (guardianship).
.Alzheimer’s Associations has a plethora of good information and local resources on their website, https://www.alz.org.
