Comment from Scott: My sisters and I can't agree on where my mom should be placed. My wife and I would like to bring her home with us to care for her. The problem is my sisters and my wife don't get along so my sisters refuse to have my mom live with us. We are financially and physically able to care for her in our home. Also, none of my sisters visit her regularly and certainly haven't offered to care for her. Why should we pay for her to be cared for in a facility when I have a space for her in my home? I am torn between my wife, sisters and what is best for my mom. What can I do to come to a final conclusion? My mom can't live alone for much longer. I really need to make a decision. Thank you for any advice you can give me.
Barry Jacobs: I appreciate your devotion to your mother, Scott. But what's missing from your question is your mother's voice. Where does she want to live? If she still lives alone, I would guess she still has the cognitive capability to make such a decision. If she has asked you to make the decision for her, then I imagine that your sisters are pretty sore that you — and not them — have been given that privilege. If you have the power to decide to move her into your home, then please go out of your way to reach out to your sisters.
Can peace be brokered between your wife and them? Could you offer your sisters direct access to your mother without having to go through you or your wife? I have no doubt that your mother would be gratified if all her children get along and pull together.
Comment from Angie: I am the main caregiver and power of attorney (financial and health care) for my grandmother. None of her six children will step up and take an active role in helping to manage her care. But when I go to make any decision they all jump down my throat. I know that she is their mother but I am frustrated that they just jump in and out of the situations. Legally I don't have to consult with any of them but personally I want to keep a good relationship. How should I talk with them about this?
Barry Jacobs: The bond you have with your grandmother seems to prove the family psychology cliché that grandparent-grandchild relationships are often easier and more trusting than those between parents and children. Yet, when it comes to caregiving, your family's arrangement is highly unusual; one or another child of an aging parent is almost always the primary caregiver.
I imagine that your grandmother's children have mixed feelings about the key role you're playing. That may be one reason they are questioning your judgments and trying to assert their own.
I suggest that you try to solicit their help while, at the same time, limiting their power. By creating a listserv with which you post regular updates on your grandmother's status, you will better establish yourself as the true family expert on the medical and logistical details.
You will also ingratiate yourself by keeping them in the loop. But providing them the courtesy of regular information is not the same as offering them a say-so over caregiving arrangements.
Your tone should be polite but authoritative. If they write back to you with demands and protests, you should take seriously their concerns but also make clear that matters are well in hand.
Persist in this strategy and they will eventually acknowledge your leadership.
Comment from Lawrence: When caring for an adult of sound mind — what is the best method to effect compliance with medical treatment? As an example, a person with diabetes refuses to alter their eating habits and adversely affects the progression of the disease.
Barry Jacobs: This is a very common problem. Many caregivers get angry at care recipients who don't seem to care as much about themselves as the caregivers care about them. My advice is to talk directly to the parent about the ramifications of his choices of health behaviors. Don't mince words. Tell him that he's making your job harder. Beyond that, there's not much you can do; there's no way to force people to change lifestyle habits they simply aren't interested in changing.
Comment from Sarah: What do I do when my mom needs therapy but refuses to get it?
Barry Jacobs: As an old supervisor used to say to me, "You can open the door but you can't make people go through it." Forcing your mom to attend psychotherapy sessions will likely make her so angry and guarded that she won't get any benefit from them.
I suggest, instead, having conversations with your mother and her primary care physician about what may help her to better manage her stress at this point in her life. When the idea for therapy comes from a doctor rather than a family member, people often hear it differently and consider it more seriously. If your mom's physician can help your mother become more positively inclined to giving therapy a try, then you could offer to attend the first few sessions as a way of smoothing the way for her new relationship with a therapist. But please don't push even this idea too hard. Ultimately, she has to decide to walk through the door on her own.
Comment from Cheryl: My father is 89, living independently (2 minutes away from me). He is still able to drive to grocery store but complains all the time about how weak he is, breathlessness, neuropathy, depression, food is flavorless. etc. etc. His primary care physician (PCP) retired and was replaced with a younger, foreign doctor whom my dad does not like. The doctor will not prescribe meds unless dad sees him every three months. Dad won't go, so he is splitting his meds in half in order to prolong them. He won't go to a new doctor, either. He is immobilized by this. I made an appointment with a neurologist for neuropathy meds. He got angry and told me to cancel it, which I did. I am tired of hearing about his doctor dilemma if he won't let me do anything about it. (I have told him to make an appointment and I will go with him. He can't hear and refuses to get hearing aids, so I go to all his appointments anyway.)
Barry Jacobs: It sounds very challenging, Cheryl. Grumpy (i.e., depressed) and stubborn are a tough combination. Is it possible for you to reach out to your father's retired physician to ask him or her to introduce your father to a new doctor he might like? Or are there other people who your father trusts (e.g., old family friends, pastor) from whom he'd take a medical referral? If at all possible, you don't want to be in a tug-of-war with your father about this issue. Recruit someone else with influence to convince him he needs ongoing medical care.
Comment From Alex: How do you deal with a 90-year-old man who has always been abusive and still is? My father-in law who I have never gotten along with now lives with us. He is verbally abusive to us, but mostly me. When my wife is around, he acts civil enough. But when I'm caring for him alone, he becomes a monster. He curses at me, yells (LOUD) and threatens me. I thought he might mellow out with age but it seems like he has gotten worse. Our marriage is hanging by a thread. Forget about a rest home, my wife won't do it. Any suggestions?
Barry Jacobs: I'm impressed that you've hung in there with your father-in-law as well as you have. But no one should have to put up with that mistreatment, especially when he is trying to help.
I recommend that you tell your father-in-law that you will leave the room every time he yells. Tell your wife, too, that you will distance yourself from him each time he abuses you. Explain to her that you think this is the best way to encourage your father-in-law to actually change. Please take the threat of sending him to a nursing home off the table; your wife clearly won't tolerate that. Instead, assure her that you will do what you can for her father within reasonable limits.
Comment from Courtni: What do you suggest: I have a father who had his fourth stroke two months ago that involved left-sided weakness and my mom has congestive heart failure that had worsened just prior to my dad's stroke. They both have not completed a will and refuse to let anyone in the family help them with completing the will. They are both 76 years old.
Barry Jacobs: Many people, unfortunately, believe that preparing a will or a living will somehow makes them more likely to die or suffer some untoward medical event. This is, of course, specious magical thinking that doesn't help them or their caregivers. I think you need to talk directly with your parents about their attitudes about preparing for the inevitable. As part of that discussion, I suggest you tell them that their lack of preparation will create greater burden for you when they die. Bring in a trusted family friend or religious counselor to speak with your parents to reinforce your point.
Comment from Guest: What is the best method of communication between siblings not living near each other? Is there a better way than cc-ing all?
Barry Jacobs: I recommend that siblings have at least quarterly meetings — in person, if possible, but via conference calls, if necessary — to discuss their parent's medical situation and caregiving needs and to fine-tune the caregiving plan. By communicating regularly in this manner, siblings can better communicate their respective concerns, as well as convey changes that have taken place in their individual lives that impact their abilities to be caregivers. This makes for better teamwork and better sibling relationships going forward.
Comment from Rachel: Do you recommend mediators? What if I can't afford it?
Barry Jacobs: You can use a pastoral counselor or trusted family friend to convene a meeting. If conflict is severe, a mental health professional still may be worth the money.
AARP: Thank you Dr. Jacobs for answering these great questions from obviously caring — yet conflicted — families.
Barry Jacobs: I've really enjoyed talking with all of you. Good luck with the important work you're doing.
AARP: Continue the discussion on our Discussions Boards in our online community. And, as always, you can find online caregiving resources in our Caregiving Resource Center or call our free Caregiving Support Line at 877-333-5885 to find services and support groups, both nationally and locally.
Barry J. Jacobs is a clinical psychologist, family therapist and the author of the book The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006).