What Can I Do?

NFCA recently received inquiries from two family caregivers, both of whom are attempting to provide assistance to a loved one who is rejecting the caregiver’s efforts. Because these situations deal with such similar issues, we felt it would be helpful to publish the questions together. Dr. Jacobs’ response to both caregivers follows the questions below.

My 90-year-old aunt lives in another state. Her only other relative is a brother who is also a long distance from both of us. My aunt is a very difficult person. Her doctor has said she is not to be alone or to drive. We finally found an assisted living home and she agreed to go, but after the deposit was made she changed her mind. She fired the caretaker I hired and fought with the visiting nurse. I took the car keys away but she hid one and is now driving. I sent her doctor forms to have her driver’s license taken away but he hasn’t done a thing. She has messed up her bank accounts and some of her bills. At one time I could help her pay bills but she made some changes to the status of her accounts and now I’m not sure if I still have power of attorney. She accuses both her brother and me of stealing from her and won’t let us help her. Now her doctor will not speak with me. She consumes several alcoholic drinks a day and eats very little; she is down to about 80 lbs. She can’t remember things from one day to the next. She goes up and down basement stairs on her hands and knees if necessary. I’m at my wit’s end. My children tell me I’m not aggressive enough and that they could handle things better. I’m not happy with their advice but now I’m questioning myself.

(See next question for more on this topic, followed by the answer.)

My single, 41-year-old brother was diagnosed with ALS late last year. I am his main caregiver. On top of the ALS, he suffers from bipolar disorder, which he refuses to treat. He has also refused any medicine or help for the ALS. I convince him to shower about twice a month. I’m watching him suffer and go downhill so quickly. He’s not eating and, with the lack of food, the disease is progressing faster. He did sign a medical power of attorney and has listed me on all his HIPAA forms. My understanding was that the medical power of attorney only comes into play when he is unable to make decisions. When I discuss my concerns with him, the discussion isn’t well received. I’m feeling very lonely and I don’t know what to do.

What are the limits of caregiving? Limited time, money and energy certainly affect caregivers’ capacities to do their jobs. But the greatest barrier is probably the resistance of the person who is the object of care. Despite our own good sense of the realistic needs of our loved ones, they may vehemently disagree, either because they’ll lose face by accepting care or because they lack the judgment to realize they no longer can fend for themselves. A third possibility is the saddest: They have simply stopped caring enough about themselves to want to be helped. An old supervisor used to say to me that if you care more about the other person than he cares about himself, then you have a conflict. Many caregivers find themselves stuck in such power struggles.

The other important consideration is that, as a society, we preserve people’s rights of self-determination until it is proven that they are at imminent risk of harming themselves or others. That includes the right to make pig-headed, contrary decisions that one day could lead to disastrous results. We strip people of their rights only when we’ve proven in a court of law that some kind of brain impairment — typically dementia but occasionally severe depression — prevents them from caring for themselves. That legal process is time-consuming and arduous.

In reference to the first question above, your aunt has many of the hallmarks of dementia, including short-term memory problems, probable paranoia, and poor self-care. You aren’t going to be able to reason with her to allow you to help her. I disagree with your kids; in my opinion, attempting to aggressively strong-arm her will only exacerbate her paranoia and resistance. So what viable option do you have? You could contact the Area Agency on Aging where she lives to express your concerns about her and to request that she undergo a competency evaluation. That agency’s Protective Services division may then initiate an investigation that will include having a psychiatrist or other mental health professional determine her capacity to understand the consequences of the decisions she’s making. If, on the basis of the psychiatric report, Protective Services believes that she is incapable of maintaining her own safety, it may ask a judge to appoint a guardian to make financial and medical decisions for her.

It is impossible to know exactly what Protective Services or a judge would say about your aunt’s need for a guardian. What I can predict with reasonable certainty is that, if you do nothing, your aunt is not likely to allow you back into her life but will continue to make poor choices that place her at some risk. I think you have nothing to lose and much to gain by initiating a competency evaluation.

In reference to the second question, you want your brother to fight to live as long and as well as possible. But you can’t force him to share your goals. Depression may be affecting his willingness to take his ALS medications, but it’s also conceivable he may be making a sound-minded choice to allow the disease to take its natural course — one that others without a history of bipolar disorder have made when dealing with an unrelentingly devastating illness such as ALS. I suggest taking the following steps: Tell your brother that you respect his right to decide for himself whether or not to battle ALS but that you would feel much better about any choice he makes knowing that he isn’t depressed at the time he makes it. Ask him if he is taking his medications for his bipolar illness. If he isn’t, please urge him to do so — the better to ensure he is approaching ALS with his best sense of equanimity. You may also want to ask his permission to confer with his psychiatrist about your concerns. If your brother is taking his psychiatric medications and his psychiatrist and/or therapist believe that he isn’t actively depressed, then, as painful as this may be, I would accept your brother’s decision not to take ALS drugs. Asking him how you could help him live comfortably for whatever time he has left will allow you to be his ally, not his adversary, for the remainder of his life. Under those conditions, he will be more likely to accept your help and love.

But if your brother isn’t taking his psychiatric medications and his psychiatrist believes that he is severely depressed, you may need to take drastic steps to ensure the veracity of his decision-making. The psychiatrist could help determine whether your brother needs an involuntary psychiatric hospitalization to treat his depression aggressively so that he can then make sound-minded choices about ALS treatments. Another option less likely to succeed would be to seek guardianship for your brother through the courts. Both these actions would certainly upset him and probably cause him to further distance himself from you in the short term. In the long term, he might come to appreciate that what you did was the most loving act you could think of to help him live as well as possible with a very bad disease.

I am the family caregiver for my husband and four children, all of whom suffer from the same degenerative condition. We live in a rather remote area, so getting here takes some travel time. It’s wonderful that people want to stop by to visit, but they often turn up when it’s inconvenient. I find that all I can do is be nice and entertain them while actually there’s a caregiving crisis going on; then later I have a meltdown. How can I let people know politely that it’s not a good time, or, better yet, how can I be proactive and set things up so that inconvenient visits don’t happen in the first place?

The implicit question here is whether it’s all right to set boundaries around your home and family. In other words, is it OK to set the laws governing your domain so that extended family members, close friends, and neighbors have to pay heed? I believe it is. Most non-caregiving families do this as a matter of course. We tell people not to call us during our dinner hours or late at night when we’re likely to be asleep. We don’t want them to drop by while we’re in the shower. Such simple rules ensure us privacy and a sense of control over our homes. The adage “good fences make for good neighbors” underscores that if we set boundaries, then we feel safer and more comfortable and, consequently, are more likely to get along well with others.

How could you set boundaries that would provide you with safety and security but still be permeable enough to make others feel welcome? Here are some possibilities: Ask everyone, as a courtesy, to phone first at least a half hour before they arrive; you could tell them you need that time to straighten up your house. You could set specific visiting days or hours during which you have a completely open-door policy and anyone could just show up. You could issue regular invitations — engraved, if you like — so that others feel they are welcome on a regular basis but you would still maintain control over when they would come.

Especially given your complex family situation, you need those types of boundaries in order to manage your life better and be the best caregiver you can be. If others take offense in some way, then they don't understand your caregiving role -- or simply choose not to care.

What Can I Do? is a question and answer column aimed at helping to meet the needs of individual readers. Answers to questions in this issue were provided by Barry Jacobs, PsyD, Director of Behavioral Sciences for the Crozer-Keystone Family Practice Residency Program of Springfield, PA. Dr. Jacobs is a clinical psychologist who specializes in family caregiving issues. His first book, The Emotional Survival Guide for Caregivers — Looking After Yourself and Your Family While Helping an Aging Parent, was published in June 2006 by Guilford Publications. Go to www.emotionalsurvivalguide.com to learn more.