Editor's Note:This chat transcript has been edited for clarity.
AARP: Welcome, Dr. Jacobs. A lot of people tell us one of the hardest parts of caring for a parent or loved one is the family turmoil. We're glad you're here to answer our readers' questions.
Barry Jacobs: Thank you so much. I appreciate being here.
Comment from Larry: As a caregiving spouse I find that some children disconnect with ill parents. Younger children may feel resentment. How can you support your children when spending so much energy caring for your spouse?
Barry Jacobs: Larry, this is very challenging. Caregiving spouses are often caught in the dilemma of wanting to protect their children from the caregiving duress and hoping they'll step up and pitch in. Most parents try to strike a balance between the two, taking into account the child's age.
Older children are often expected to assist more with the care of their ill parent. Teenagers, though, are frequently in the midst of distancing themselves from their parents as a normal part of their development, regardless of whether they have a parent with illness or not.
I suggest talking with your children as openly as possible about their mixture of feelings about having an ill parent. That would be a good starting point to lead to a further discussion about the roles they do or do not want to play, as well as your expectations of how they will contribute to the family. In general, I recommend that the children play some role but not one that is so onerous as to deprive them of the normal joys of childhood. For example, you can expect them to stay connected enough to spend time with or do simple tasks for an ill parent but those activities shouldn't preclude them from seeing friends, participating in sports, or just hanging out.
For an excellent new book that explores these kinds of issues in depth, please see My Parent Has Cancer and It Really Sucks by Maya Silver and Marc Silver (Sourcebooks, 2013).
Comment from Steven: My eldest brother, an attorney, is shamefully absent from the care of his mother. He barely calls once a month any longer. He seems to be in denial that his mother has a mild cognitive impairment. How do you get a "professional" to be a man and get involved?
Barry Jacobs: Too often, the brunt of caregiving falls on one family member's shoulders. The reality is that — however unjust the imbalance of efforts may be — no family member can compel another to do the right thing. I recommend that you write your brother a handwritten letter in which you summarize what the doctors have told you about your mother's condition and her needs for care now and in the future. Then tell him you are committed to caring for her and that you hope all of her children and close relatives will make similar commitments. Explain to him that the stakes are high; how much he chooses to contribute (or not contribute, for that matter) during this time of family duress will have long-term effects on his relationships with his mother and with you.
Finally, don't ask him generally for more help; make a concrete request, such as, "Would you be willing to call her weekly?" or "Can you visit this summer to provide me with some respite?" If your brother rises to the occasion and begins to do more, then you have engaged him as a member of the caregiving team. If he ignores your letter or tells you he's too busy, then you know he's chosen to sit out. As sad as it sounds, if he's off the team, then there is no use wondering further about his willingness or his loyalty.
Comment from guest: When caring for a parent or child the caregiver can release stress by discussing things with their spouse. If caring for a spouse you lose this connection. What can spousal caregivers do to alleviate the unique losses they face?
Barry Jacobs: When spousal caregivers stop sharing their feelings with the ill spouse, they lose some of the emotional closeness of the relationship. If possible, please keep talking with your ill spouse, even if some of what you have to say sounds negative. I've seen ill spouses who continue to be a confidante to the well spouse even if they no longer have the physical capability to be an equal partner in earning a living, doing household chores, etc.
Comment from Ralph: My sister is mad that my parents have asked me to handle their financial matters when the time comes, while she was asked to handle their medical needs. She feels like it isn't fair that she got "stuck" with the "hard one." I feel that it's my parents' choice and if she has an issue than she needs to bring it up with them. I would rather not deal with this but want to get things figured out before a crisis happens and we are not all on the same page.
Barry Jacobs: Caring for an aging parent often brings to the surface sibling rivalries that have lay dormant for years. When your sister says that the current arrangement isn't "fair," she is saying, in essence, that you were always your parents' favorite and are still being given special privileges. Brushing aside her complaint will only compound her feeling that she is treated like a second-class family member. Getting angry at her will just pique her sense of injustice.
Instead, Ralph, I suggest you help her step back from her old childhood feelings and assume a more adult stance. Please empathize with her frustrations. Voice your trust in her talents by telling her that you know she could do either job very capably. Ally with her by offering to meet with her and your parents to revisit how the roles have been divvied up. She will appreciate your sensitivity and support and be more accepting of whatever arrangements your parents ultimately decide.
Comment from guest: How do we "protect" our dad from his wife, who seems to either be in denial about his dementia, or not intelligent enough to deal with it? And, at the same time, she can handle everything — no problem. She can't. (Assume we're not grabby, resentful, hateful "kids," OK?)
Barry Jacobs: I'm assuming that your dad's wife is your stepmother. I recommend that you talk with her about how important it would be for you to be able to give back to your father for all he has done for you in your lifetime. In other words, you are asking her to allow you to be a good child to your parent. This is a much better approach than casting doubt on her capabilities or encroaching on her right to make decisions about your father.
Comment from guest: My parents treasure their independence so much so that they both were hospitalized recently and didn't tell my sisters and me. What steps do I take to prevent this without stepping into being the "oldest" again?
Barry Jacobs: I admire your parents' sense of independence. At the same time, it would be important to communicate to them that they are doing you a disservice by keeping you out of the loop by not informing you of the important events in their lives. Please tell your parents that you do not want to take over their lives but instead just want to be a conscientious and responsible child. Reassure them that you will always respect their privacy and their wishes but that it isn't fair for them to cut you out completely. I hope they relent and share more with you.
Comment from Ann: My mom and I have never had a good relationship. She really did not raise me and I was always the "adult" in the relationship. Now she suffers with a variety of conditions and is in the early stages of dementia. I am an only child and have no one else to help take care of her. I am angry that I have to take care of her even though she never took care of me. At the same time I feel guilty for carrying around all this anger because she is sick and obviously needs my help. What can I do? Am I wrong for being angry? I am so torn. Please help.
Barry Jacobs: Ann, you have no reason to feel guilty about being angry. It sounds like you were victimized by her neglect when you were a child. Now you are victimized by her needs while you are an adult. I'm sure that you do what you do for her now, to a large degree, out of a sense of obligation. My guess, though, is that part of your motivation is simply that you're a good person.
Good people sometimes make sacrifices because they believe in the morality of what they're doing. They have values that override the calculus of who-did-what-for-whom. You may decide to continue to provide care for your mother as her dementia progresses because you believe that it is a moral thing to care for the vulnerable, not necessarily because you relish caring for the inadequate mother she was. That said, you may still decide over time that values alone can't stave off the feeling that you are being unbearably victimized again. If so, then please minimize your role as her primary caregiver and find other family members and professionals to take the lead in meeting her burgeoning needs.
Comment from Patricia: I am my mother's primary caregiver and have just found out that my brother-in-law stole money from her account. My sister helps out with her care as well but is angry with me for confronting her husband. I don't want to stress my mom, who is dealing with a host of medical conditions, but I am at the point of not wanting to deal with my sister and her husband at all. As if I don't have enough stress. What is the best way move forward?
Barry Jacobs: Patricia, your situation is wrenching. Nothing raises one's emotions than the thought of an older adult being swindled out of her savings. I understand your disgust over your brother-in-law's actions and your anger at your sister's complicity. That said, I've never recommended cutting off family members. I believe it is still in your mother's interest to have all of her children, their spouses and all other loved ones working together as well as possible on her behalf.
Certainly, protect your mother's assets. But find a way to forgive just enough to keep your sister and her husband in the fold as interested parties who can provide your mother with cheerleading, meals, hands-on help and love — just not financial management.
Comment from Courtni: I need suggestions on how to better handle the stress that comes with helping my mom take care of my dad. My mother yells at me when she is stressed and I am the only one out of her three children that helps with my father. She seems a little jealous of the time and care I give to him. Her anger hurts me and I want to retreat from her. I know I can't because she needs help.
Barry Jacobs: I assume that your mother feels a kind of proprietary pride in caring for your dad. But please remind her that you had a father-daughter relationship with him prior to his becoming ill.
Tell her that you don't want to step on her toes but that you want to continue to relate to your dad — just the two of you. You can ask her for tips on how to care for him properly. That may help her feel that you are respecting her expertise and not encroaching on her territory.