My mother with dementia will no longer leave the house, what should I do?

2 answers | Last updated: Sep 22, 2016
Sisterred asked...

My mother suffers from dementia and she lives in her home with an irresponsible daughter. I was in the process of finding an assisted living community for my mother that specializes in dementia care when her condition began to rapidly deteiorate. I can not complete the assisted living process until her condition has been diagnosed. Her internist sent her for a snogram and discovered a tumor behind the thyroid which needs to be surgically removed. The hyperparathyroidism is the likely cause of her rapid mental decline. I have a major problem. The internist wants her to come in for another appointment (so he can refer her for an MRI before referring her to a surgeon) and I am no longer able to get her to leave the house. We already cancelled two appointments. She is irrational, uncooperative and has no short term memory. (PLEASE don't offer suggestions for getting her out of the house and accept the premise that I can no longer do it.) What should I do? She needs to have this surgery ASAP. Additionally, my mother needs Veteran's benefits in order to receive Assisted Living Care. This process is also on hold because we can't get the benefits until the doctor "confirms" his diagnosis. (He has already told us in very certain terms that she has hyperparathyroidism and that she needs surgery to have the tumors on her thyroid removed - but he will not complete the form we are required to provide to the facility until she has an MRI. I am extremely uncomfortable with her current living situation. I live an hour away and her other daughter is not caring for her properly. She needs to be in assisted care as soon as possible. I desperately need some advice.

Expert Answers

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

Dear suffering daughter:

It sounds as if you're really between a rock and a hard place, and based on your own statement, "PLEASE don't offer suggestions for getting her out of the house and accept the premise that I can no longer do it." I must tell you that you have only a few options available to you.

The first approach I would consider is doing whatever it takes to get your mother's care provider, your sister, on board with your level of concern for your mother and HER needs. Ask your sister to meet with or at least talk with the doctors who have indicated that your mother needs help. That would be the best approach, assuming your sister will accept your suggestions and begin working with you in support of your mom.

Failing that, you might consider working with your mother's doctor, the one who states that she needs to have surgery, and perhaps together, contact adult protective services to have your mom removed from the house for her own protection and good, and placed in a hospital for observation and tests, including the MRI to confirm the diagnosis and need for surgery. This can be done through Adult Protective Services over the objections of your mother and your sister, whom you say is being irresponsible, and your mother is in danger or a desperate situation.

It may also be possible that the doctor, if he fully understands your situation, may be able to take steps that alter the sequence of events by signing the medical forms to admit your mother for the validation testing of her condition. And once she's in the hospital, based on your ability to convince him of the seriousness of the situation do what has to be done. But by law, he cannot force your sister or your mother to be tested or to enter a hospital or other facility.

To accomplish all the steps you say you wish to take, you may want to start by seeking to gain legal control of your mother, perhaps by working with an attorney to establish guardianship. If you succeed in that effort, and the court appoints you as your mother's guardian, all the other assistance you want to provide your mother can be accomplished. Guardianship establishes the legal controls you seem to want and need, and will make applying for Veteran's benefits, as well as resolution of the initial medical problems regarding your mom easier to initiate.

Barring the aforementioned steps, you really have no authority to force your mother or your sister do anything they choose to avoid, at least as long as they are considered competent adults in the eyes of the law. Sometimes, there's nothing we can do to stop self-destructive behavior or alter bad decision-making by members of our family. Unfortunately, everyone loses when that occurs.

It appears that other than the suggestions noted above, you have done just about everything in your power to help your mom. Without legal control, the truth is, there isn't much more you can do, and the fact that you live an hour away makes a difficult situation even worse.

I wish there was a better response I could offer, but the obstacles you stated are extremely difficult to surmount, particularly in a timely and cost effective manner. If you cannot convince your sister of how dire your mother's situation is, I'm afraid that your options are going to be quite limited. I wish you the best of luck in your efforts to help your mother.

Community Answers

Caringdenise answered...

Hello, I'm sorry to hear about the situation you described. In addition to the guidance you received from Mr. Kauffman, I wanted to share some resources you may also find helpful...

Family Matters: Avoiding Conflicts Over Money and Legal Issues

Adult Guardianship and Conservatorship

Directory of Local Home Health Agencies

Directory of In-Home Care Providers or Personal Care Assistants

Area Agency on Aging -- which can help make referrals for legal assistance and other senior care resources in your community

Veteran's Benefits info

Steps & Stages for Alzheimer's and dementia caregivers

Online Support Groups for Alzheimer's and dementia caregiving

Thank you for asking, and all the best to you and your family at this difficult time.