Caregiving Q&A With Barry Jacobs

Clinical psychologst and family therapist answers your questions about caring for a loved one

Comment From Marian: I am an only child taking care of my 100-year-old mother. Although I have good caregiving assistance, I'm still resentful that I'm left with this responsibility.

It is understandable, Marian, that you are resentful about caregiving. Many family caregivers have similar feelings, though they often feel guilty about having them. I counsel family members that it is normal and expectable to feel ambivalence — positive and negative feelings — about one's caregiving responsibilities. What's key is to distinguish between resenting caregiving and resenting your mother.

See also: 12 resources every caregiver should know about.

I'd ventilate your feelings about caregiving to other caregivers, perhaps at a local caregiver support group or on AARP's online support group, as a way of garnering validation and support. However, if you feel consumed with feelings of resentment toward your mother — and especially if you find yourself taking those feelings out on her — then that's a sign that you need to change the caregiving plan.

That could mean reducing the responsibilities you have by utilizing greater assistance. Or, if your feelings remain intense, it could mean deciding to place her in an assisted living facility or skilled nursing home.

Embracing Mother and daughter in hospital - The emotional side of caregiving

Caregivers become very focused on their loved one's needs and neglect their own needs. Helping yourself will empower you to be able to help your loved one. — Jose L. Pelaez/Corbis

Comment From Pam: I am in my late 50s and have a friend, the same age, who was diagnosed with early-onset Alzheimer's. What is the best thing I can do to help my friend with this disease?

Research finds that people with early-onset dementia find that, as soon as their diagnosis is revealed, other people distance themselves from them. It's wonderful that as a true friend you want to draw closer to her.

Please engage in activities that the two of you normally enjoy. If she has memory problems, please matter-of-factly prompt her. Encourage her to do as much as possible for herself. Reassure her that you enjoy her and want to spend time with her.

Comment From Sharon: I am caregiver for my mom, who is late stage Alzehimer's and does some weird things that I don't understand because she does not talk anymore. She sits and does rocking motions, and also waves her hands? Help.

It is highly frustrating for caregivers when their loved ones with Alzheimer's dementia develop "aphasia" — the inability to use language — or other communication difficulties. How are you to know, Sharon, what your mother wants or needs at any given moment?

There are excellent family education programs offered locally and online by the Alzheimer's Association that help caregivers understand aphasia and other cognitive deficits, as well as how to maximize communication with patients with Alzheimer's.

Your mother's neurologist or primary care physician may also have educational materials and suggestions that would be helpful.

Comment From Saskia: Dear Dr. Jacobs, when I finally have some time for myself I don't know what to do or where to start. I almost feel guilty when I have some time for myself. How do I fix this problem? Best wishes.

Caregivers become very focused on their loved one's needs and neglect their own needs. But taking time to replenish yourself will make it possible for you to sustain yourself through the caregiving years. Helping yourself will empower you to be able to help your loved one.

Comment From Yvette: Are there signs at the onset or early stages of anxiety that can be self-identified?

We all worry, especially if we are providing care to someone who's ill or disabled. The definition of anxiety is worry that is uncontrollable — that is, racing thoughts or nagging concerns that we can't slow down or turn off.

Anxiety frequently interferes with sleep and concentration. In its most extreme forms, it can cause intense physiological reactions, with pounding heart and rapid breathing, that we call a panic attack. If you are having any of these of symptoms, Yvette, then it would be wise to confer with your primary care physician. He or she can make an appropriate diagnosis and offer behavioral treatments (e.g., physical exercise, relaxation modalities, psychotherapy) or medications.

Comment From Sarah: My husband has been very depressed since his heart attack. How do I deal with his depression and irritability?

Research shows that about half of all heart attack survivors will develop depression afterward. Irritability is a common symptom of depression, particularly among men. I suggest that you have your husband evaluated by his cardiologist or family physician, specifically for depression and anxiety. Psychotherapy and/or medications may be very helpful.

Comment From Anne: I'm caring for my mom (she had been living with me but is now in a nursing home) and my brother, who lives in a different state, is completely unhelpful and isn't even there for me emotionally. I'm so frustrated and angry at his total disconnect. What can I do?

There are gender issues in family caregiving. Oftentimes, the brunt of caregiving responsibility for an aging parent falls to the oldest or youngest daughter; the sons seem to get away scot-free. Not only is this unfair; it makes sisters more likely to burn out and eventually weakens the bonds between siblings.

I recommend writing your brother a calm but firm letter. (Yes, the old-fashioned kind with an envelope and stamp; it will get his attention.) Tell him that you love him but need more of his help. Enclose some of the tips on long-distance caregiving on the AARP website. Ask him to step up to do more for you, if not for Mom. Give him a list of specific tasks to choose from — e.g., visiting and providing respite, paying for certain expenses. Tell him that the stakes are high; your relationship with him will be irreparably harmed if he doesn't heed your cry for help. Hope he responds, even in some small way.

Comment From Bonnie: Is there an accurate method to determine if I am going to get dementia and/or Alzheimer's?

The diagnosis is generally made today on the basis of clinical symptoms — for example, memory deficits or problems with reasoning skills. There are other methods in development that test the blood or spinal fluid to help make the diagnosis. These methods are not currently widely available.

Please speak with your family physician with your risk factors for dementia and steps you can take to preserve your thinking skills, such as remaining physically fit, keeping your blood pressure at a healthy level and lifelong learning.

Comment From Sylvia: I'm exhausted. All my energy goes towards caring for my parents. I feel burned out. What can I do?

Caring for aging parents can feel like you're running a marathon. Unless you've paced yourself well and taken in plenty of replenishment along the way, you can deplete yourself long before the race is finished. I'm concerned, Sylvia, that you haven't run your race in a sustainable way and now you're tuckered out.

Your caregiving plan needs to be altered — by increasing the amount of support you use and decreasing the responsibilities you have — or I doubt you'll be able to continue for as long as your parents need your help. That will not be in their interests or your own. I suggest that you talk with your local Area Agency on Aging to identify community resources. You may also want to be evaluated by your family physician to ensure that your burnout isn't deepening into a debilitating depression.

Comment From Dinah: How to caregive with a spouse who doesn't really want to be ill but knows he is. Still going to work but also getting chemo.

Many people who are undergoing treatment for a life-threatening illness try to play down the effects of that illness and its treatments in order to cope better emotionally. This is particularly true for men who are proud and need to save face by not showing what they consider to be weakness. I really wouldn't challenge your husband on this coping style unless you think that he is not caring for himself well enough (or allowing you to care for him) and thereby putting himself in harm's way. Otherwise, I'd recommend doing what you can for him without asking him if he needs help. It sounds like he is lucky to have someone as concerned and conscientious as you in his corner, Dinah.

Comment From Melba: My husband is in the very severe stage of FTD. Very few people call or visit and it is very lonely. He is under hospice care. How do I enjoy any activity when he is the love of my life and he is not here.

Melba, I'm sure it is very hard to enjoy life without your husband. Many caregivers don't feel like they deserve to be happy if their loved ones have been diminished or have died. But I'm sure your husband, if he were in sound mind, would want you to still participate in living, not just go through the motions of existing. Time does heal. You may yet learn to be happy with a new kind of life.

Comment From Diane D.: When is it time to place ALZ-dementia survivor with moderate DX?

This is an excruciating, long-debated question for many families. The short answer is that it depends on what you are willing to tolerate. Seventy percent of Alzheimer's patients reside in their own or family members' homes, some with advanced symptoms of dementia. But families often place their loved ones during the middle phases of Alzheimer's when patients are frequently agitated and disruptive. This is what happened in my own family a year ago.

My stepfather repeatedly wandered around his apartment in the middle of the night, rummaging through closets and taking the metal covers off of the electrical outlets. He was in danger of shocking himself electrically. That was the last straw for my mother; she placed him soon afterward. I believe it was the most loving thing she could have done for him and for herself at the time.

When it is time for you to place your loved one, Diane, I hope you feel the same sense of surety that my mother felt.

Comment From Jeanette: What are my chances of getting Alzheimer's if both my mother and uncle (her brother) developed the disease in their early to mid-70s? My brothers and I are terrified!

Research suggest that genetic variables play only a small role in the development of Alzheimer's dementia in most people. Early-onset dementia — before age 70 — is more likely attributable to some genetic factors. Your family physician can more likely speak to your relative risk. The best defense against dementia for you and everyone else is taking care of your health by eating well, not smoking and keeping your cholesterol and blood pressure in check.

Comment From Lynda Primavera: I am the only child of a 90-year-old mother with Alzheimer's, which is progressing. I work full time (leave the house at 7 a.m. and return around 4 p.m.) and she is alone all day long. She used to be very active, but now refuses to leave the house. I had a service come to pick her up to bring her to a chair yoga class; she refused to get in the car. They were great, but after the third refusal, they could not come any longer. I tried to get her to go to a day care center, she refuses. I mention nursing home and she screams and cries. She does not want a caregiver in the house, and I am also hesitant about having someone in the house all day; and the expense is not something I can easily cover. She goes from the den to the bed. She surrounds herself with books, magazines and the daily newspaper — she used to be a avid reader — she looks at a few pages of things, but of course, doesn't finish or remember anything she reads. She sleeps constantly. She refuses to eat normal meals. All she wants is ham and cheese. If I don't buy that, she doesn't eat at all. She used to be an incredibly healthy eater. I am extremely worried about leaving her in the house all day while I'm at work — I teach school, so I call her on my lunch and free period (if I'm not subbing) but that is the only contact she has during the day. This sounds so calm as I write this, but my stress level is over the top. I do not know what to do. My only break is when I'm at work.

There comes a time in the lives of families dealing with a progressive dementia when the most prudent step a caregiver can take is to use her own judgment instead of the impaired judgment of her declining loved one. You are a devoted daughter, Lynda. You want to respect your mother's dignity by continuing to support her right to make choices for herself. But the choices your mother is making nowadays are potentially harmful. Her poor eating habits will jeopardize her health; her excessive sleep will ultimately sap her physical strength. In the event of a fire or other emergency, I doubt she'd have the wherewithal to take steps to protect herself.

To best help her now, you need to take greater charge, despite her vehement protests. I suggest arranging for her to go to an adult day care center or have a home health companion with her most of the day. Yes, each option is expensive. Yes, she will balk at both. Surely, that will make you feel guilty. My hope is that you will take solace in knowing that you are making the kind of thoughtful decision for her that, if she were of sound mind, she would be making for herself.

Comment From Nadyne: Very reluctantly mom was placed in assisted living "memory" care. She was living with us. There are no support groups in Lehigh Valley, Pa., who meet on a weekly, not monthly, basis. I need other people who are going through this too.

Please check with your Area Agency on Aging or Alzheimer's Association chapter for resources in your area. You can also check out AARP's caregiver support group.

Comment From Martha Stettinius: What's the one thing you would recommend to people who are new to caregiving?

Learn the lay of the land by reading about your loved one's illness or disability. Cherish every day but also begin to look down the road to better prepare yourself for increasingly difficult caregiving demands. Use whatever support is available as early as possible in the process. Be creative and nimble about periodically revising your caregiving plan in the face of changing needs. Pat yourself on the back for doing good, loving work.

Comment From Peggy: Is your book electronic, like for a Kindle?

Look for my book in hard copy or electronically on Amazon or at any other bookseller.

Comment From newbie: There are days when I want to just scream, rip out my hair. Nothing I do helps. I take care of my parents but feel like I'm alone in the world. Help for this newbie?

Caregiving is all the more difficult if you feel isolated and alone. But you are not alone. Millions of Americans are in the same boat. Connect to support groups in your area or read the many books available on caregiver resources and support.

Comment From Guest: Dr. Jacobs, I'm 22 years old and my mother suffered a stroke two years ago, at the age of 45. I'm not resentful toward her because it's not as if she asked to get sick. But I often wonder if I'll ever be able to have a normal life outside of caring for her. I'm afraid of the everyday things like finding a husband who understands I have my mom to care for, along with my two little sisters who need a mom. I'm afraid of not being able to have a life of my own. I'm also constantly worried that she'll have another stroke, as the chances are high they've told me, especially since because of the stroke she's also suffering from depression and has extreme lack of interest in caring for her eating habits and exercising, despite advice. She waves it off because when she suffered the stroke they never found the cause of it, so she thinks her eating habits don't matter.

You are handling a tremendous amount. Your family is very lucky to have you. The key for you will be to develop balance between caregiving and pursuing your other life goals. No one should have to sacrifice the entirety of their dreams. Ask other family members to pitch in and allow you to live in a way that you had expected to.

AARP: That will have to be our last question for the day. We would like to thank you all for joining us. We also want to thank Dr. Jacobs for being here today.

For me, I want to wish you all good luck and best of health in vital work you're doing. Thank you.

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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