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.
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).
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