Dear Attorney Tully: My father is in his late 80’s and can’t handle the stress of caring for my mother, who has Alzheimer’s. He is in failing health and has tried his best to care for her for years.  Between her not sleeping, the need to monitor her 24 hours and the enormous cost of home care, he doesn’t know if he is coming or going.  Please help our father and give us some direction.

ANSWER:   You have already acknowledged that your mother’s care has become too much for your father and that he has his own health issues.  To protect his health, it is important that he understand that your mother needs more care that he can provide.  The next step is to get proper advice on how to find good care and how to pay for it.  

Many families who come into our office are concerned about taking care of both parents when just one of them needs to go into a nursing home.  When they see the cost of care after Medicare benefits run out, they are alarmed at how quickly stress and bills add up for the “community” (still at home) parent, whose spouse of so many years is now gone. 

Much of the planning that we do is geared toward making sure that one parent has a spot in a facility that will provide good care, while the costs of the care are managed.  That way the community spouse can be an advocate for his or her life’s partner without having to live in poverty.  In the context of qualifying for Medicaid (Title 19) benefits, this is called community-spouse planning.  If community-spouse planning is done correctly, a good portion of the couple’s assets can be saved for the spouse living at home, who can then better advocate on behalf of the spouse in the nursing home or supportive living facility.  

One real-world example was when our client Andy (not his real name) and his son, John, came to our office for Medicaid planning.  Andy’s wife, Alice, had developed Alzheimer’s disease and Andy was losing sleep because of Alice’s condition, which was drastically affecting his own health.  We were able to convince Andy that the best option was for him to make the transition from being the primary caregiver for his wife to being her primary health care advocate.  This meant that he would need to place her in a nursing home.  Otherwise, we predicted that his life would end sooner than hers and, as a result, Andy would be unable to care for Alice at all.  Through community-spouse planning, Alice was approved for Medicaid benefits and obtained professional care while substantial funds were protected for Andy to use to take care of Alice and himself then and in the future.

A few years later, Andy developed Lou Gehrig’s disease.  Because of proper planning, Andy was able to hire, manage and pay for a full-time caregiver in order to spend more time with his family.  Just before Andy died, he called us to make sure that all of his affairs were in order, so he could truly rest in peace.  Other than family, this was one of the most important things for this individual.  

In fact, when Andy’s health was seriously declining, his children arranged for his wife to leave the nursing home to visit him at home.  For the first time in weeks, he directed his caregiver to get him out of bed so he could shave and dress himself.  He sat in his favorite chair and was able to spend time with Alice, holding her hands and smiling. After a while, Andy said to Alice, “Honey, I am tired and I am going to rest now.”  He leaned his head back on his chair and closed his eyes and never opened them again.  

According to his son, John, placing Alice in a nursing home and obtaining financing through the Medicaid system allowed Andy to better care for Alice and free up his time and moral obligations so that he could be closer to his daughters and grandchildren, with whom he had not been close before.

Andy is survived by his wife, who is still in a nursing home, with the necessary funds to pay for continuing care already in place for her.  Unfortunately, or maybe fortunately, her disease has progressed to the point that she does not even know that Andy is gone.  Without guidance in planning, Andy may not have been able to have those three extra quality years with his family and establish lasting memories for his grandchildren.

Helping parents through disability and dying is an emotional roller coaster, but through proper planning, we can all have the peace of mind that Andy felt as his life moved on.