Q. My 59-year-old mom had a tumor removed in 2002 and although her MRIs remain clear, her mobility is fading. My dad is her primary care giver for 11 years now, and he is exhausted. I let him vent and encourage where I can, but I am unable to physically help him with mom because she is fairly overweight. He is frustrated with everything, insurance, paperwork, and just the situation of her not being able to walk. They have hired a part-time caregiver to help shower mom and help with light house duties. What is the best thing for a caregiver at this point? How does one get help?
Caregiving for a loved one with limited mobility can be physically and emotionally overwhelming. Help comes in many forms, and it sounds like a combination of both practical and emotional support might be most helpful to your family now.
Asking for help when needed is an important part of the caregiver experience. It sounds like the part-time help your parents have enlisted is a good starting place to help ensure that her basic day-to-day needs are being met. Checking in with local community agencies, religious organizations or hospital social worker may provide additional information on respite care or volunteer services to help your dad manage the practical aspects of caregiving.
You can ask your mom’s doctor about possible mobility devices (e.g., walkers, seat risers or swivel seats) that can help her move around more easily. Also, you could ask for a referral to an occupational therapist who might be able to address and work on specific mobility issues.
In some cases, a person’s physical needs exceed what family members or friends are able to provide, regardless of how much they want to or try to help. If you are finding this to be true, you may want to explore USA.gov’s Caregivers' Resources as they may help offer information on assisted living and nursing homes, and other resources and support for caregivers.
It’s also important that you and your dad are taking care of yourselves. CancerCare’s workshop, Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally, may offer some tips on managing the emotional impact of caregiving. CancerCare’s staff of licensed oncology social workers can also provide free counseling and support groups (including online and telephone support groups for caregivers) to you and your dad to help you cope with your role as caregivers.
Q. My dad was diagnosed with cancer last month. He and my mother live in another state, and I have a family of my own so I can't be there to help them out on a daily basis. What can I do to support them from far away?
Being a “long distance” caregiver is a unique experience that can be especially challenging. Working to find balance between your own needs and the needs of a loved one with cancer can feel overwhelming for anyone in the caregiver role. But remember, there are many ways you can be supportive and involved in your loved one’s care regardless of the distance between you.
Offering emotional support is one of the most helpful things that you can do for your loved one. Simply checking in and letting your dad know that you are thinking him can go a long way; call, email, Skype, send a card or visit when you can. Those reminders not only show that you care, but may also leave you feeling more connected.
You can also help your parents with day-to-day tasks like managing bills, paperwork and getting organized. Similarly, you can help them navigate the medical system. Dealing with insurance companies, remembering doctors’ appointments and accessing resources can be overwhelming. You can help your family with this by taking on some of the responsibility, communicating with their doctors and nurses, and staying informed. This can alleviate some of the practical challenges for them, while keeping you in the loop.
There are also programs such as My Cancer Circle which exist to help caregivers easily enlist additional support. This online forum creates a sense of community that helps the caregiver, but also ensures that their loved ones needs are met. Family, friends and community members are often looking for ways to help: My Cancer Circle allows them to sign up for specific tasks, like cooking meals or providing transportation, which can help them feel useful and give you some respite and comfort in knowing that these needs are covered.
And lastly, it’s important that you take good care of yourself and your family. Know that there is support available to you, too. CancerCare offers free counseling and support groups that specifically address the needs of caregivers. We offer those supportive services in person, over the phone and online. These services can help you to take care of yourself and your needs, and put you in touch with other caregivers who can relate. This support can be a comforting and powerful experience, so please call us at 800-813-4673 for more information.
Q. My grandmother has cancer. I'm worried about her, but even more so, I'm worried about my mom. She tries hard to be strong for everyone, but she is just so run down herself. She seems uncomfortable letting us be there for her. Any advice?
Many caregivers find it difficult to accept help. Caregivers often feel a sense of responsibility to take care of things on their own in order for them to feel that they’re doing “enough.” However, this can become quite burdensome, and often leaves the caregiver feeling run down, just as you mentioned your mom is. This fatigue may also be a sign of distress and can indicate a need for more support.
Letting your mom know that you are concerned about her may initiate a conversation about the importance of self-care. It is very true that in order to be a good caregiver, it’s important to take care of oneself – this often starts with the most basic of needs – healthy eating, sleeping and exercise habits. The American Cancer Society’s Caregiver Self-Assessment Questionnaire may identify specific areas where your mom can use more support. This might give you a better idea of how to help her, and how she can help herself.
Framing the conversation about self-care in a way that allows your mom to see how taking these measures for herself will also benefit her mother may make it easier for her to accept. CancerCare has a fact sheet entitled “Caring Advice for Caregivers: How Can You Help Yourself?” that may also give some helpful tips to make all of this more manageable.
Similarly, you may be able to assist by offering to help with specific tasks, like taking your grandmother to treatment or grocery shopping. This approach is generally more helpful than asking how you can help, as it gives your mom one less thing to think about or to delegate. This way, you are giving your mom a moment of respite without sacrificing your grandmother’s needs.
And talking with other caregivers may give you and your mom an additional layer of emotional support. Connecting with others in a similar situation may offer other ideas and suggestions on how to better manage these responsibilities. We also offer telephone and online support groups for caregivers and can help you find support groups in your area.
Q. How can I support my cousin who has cancer without saying something stupid or wrong that would upset her more?
It is common for family and friends to be unsure of how to best help support a loved one with cancer. There are so many different ways to be supportive, and everyone has a different set of needs as they cope with a cancer diagnosis – this means that there’s no one right way to provide support. However, you can’t know what your cousin needs or how you can help if you aren’t acknowledging her experience with cancer.
Your cousin probably has many mixed feelings given the news of her cancer diagnosis; keep in mind that the diagnosis itself is upsetting in its own right. That said: it’s okay to ask her how she is doing and to let her know that you are available to talk or listen when she needs it. Opening the doors for communication will give her an opportunity to let you know whether she is comfortable talking about her feelings or not, which may also help you to better gauge how to be helpful. Regardless of where she is with this, she will likely appreciate your willingness to listen. And if even if she’s not “there” yet, knowing that you’re open to this type of conversation may leave her more willing to take you up on your offer when she is ready. If you are still unsure of what to say, it may be helpful to read our fact sheet, What Can I Say to a Newly Diagnosed Loved One?
People with cancer also often express a need for “normalcy,” so don’t forget to have conversations with her about regular things like television, movies, books and other current events, just as you would prior to her diagnosis. Talking about more simple things may give her a break from thinking about cancer all the time – for many people with cancer, this is helpful.
Q. I'd like more information about how to help a close friend being treated for cancer. I'm also wondering if a support group could help me too?
One of the most powerful ways to help support a friend with cancer is to be emotionally available. Providing a listening ear and an openness to talk about even the most difficult of topics can provide your friend with a real sense of comfort and give them a safe place to share whatever is on his or her mind. Know that you don’t always have to know exactly what to say; simply being present and supportive goes a long way.
Offering specific tasks may help your friend to know exactly what you can provide and when. Caregivers can be helpful in day-to-day chores like laundry and transportation, and can also help coordinate medical appointments, get to know the medical team and advocate for their loved one’s needs both health-related and otherwise. CancerCare’s publication Caregiving for Your Loved One With Cancer offers more information about how to be helpful.
Many caregivers find that support groups are helpful as they give you a space to process your own feelings and get support and insight from others who can relate. Support groups often provide practical tips on managing the tasks of caregiving, help in finding balance between caring for yourself and a loved one, and can provide a powerful level of camaraderie. Seeking support by connecting with a support group or counseling can be a healthy outlet that many caregivers appreciate and learn from. CancerCare offers free counseling and support groups for caregivers.
Ask a Question
Do you have a question regarding Caregiving? We invite you to use the space below to Ask CancerCare®. If you have questions about any other topic, please email email@example.com
Questions are submitted anonymously, and responses to selected questions will be posted on this page. Please note that not all questions can be answered, but if you would like to be contacted regarding your specific question, please submit your name and email address.
Answers from Other Experts About Caregiving
Q. Do you know of any organization that would help me pay someone who takes care of me? She is not related but takes me to all my appointments, cleans my house, does my shopping and anything that needs done.
Unfortunately the financial impact of caregiving, whether by a relative, friend, or hired help, is under recognized. The type of assistance available for caregivers may depend on where you live, the medical need for services, and your own financial situation. You could contact your state Health and Human Services Department to find out if there is a state specific program to assist with the cost associated with caregiving.
Additionally, CancerCare offers limited financial assistance for cancer-related costs, including home care and transportation for individuals who qualify. You can call us at 800-813-HOPE (4673) and speak with a CancerCare professional oncology social worker.
Q. My husband was diagnosed with cancer in 2009. He finished treatment and is cancer free, but he continues to act like he still has cancer and is dwelling on it instead of getting on with his life. Is this normal?
When a person with cancer has completed treatment and shifts from life as a patient to life as a survivor, the transition period can bring up mixed feelings and often takes time to process. Each person is unique, and it is common to have an adjustment period. Life after cancer is often referred to as the “new normal,” which can be challenging for caregivers.
As you know, cancer affects not only the person with cancer, but also caregivers who must adapt after their loved ones complete treatment. CancerCare offers helpful tools that address survivorship issues, including our publication, After Treatment Ends: Tools for the Adult Cancer Survivor.
CancerCare’s Connect Education Workshops, which are accessible both by phone and online, offer a wealth of information about coping with survivorship issues. Past workshops are available through our website and you and your husband may find the following workshops helpful:
- Survivors Too: Family, Friends and Loved Ones – Managing the Fatigue of Caregiving
- Living With, Through and Beyond Cancer, Part I: Managing the Stress of Survivorship
- Support for the Caregiver: Balancing Your Needs and Your Role as a Caregiver
- My Treatment is Over: Why Do I Feel So Alone and Sad?
Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally is an workshop that might also find helpful.
Q. I'm wondering if there are any good resources out there that would help me know what to expect as I'm taking care of my mom who has advanced cancer.
Caring for a family member or loved one with cancer can be a full-time job. There are lots of unknowns and by asking for help, you have taken the first step in helping your mother. Luckily, there are a variety of resources available to assist you with caring for your mother. I encourage you to start by taking care of yourself so that you can be as prepared as possible to assist your mother. You will find suggestions in our publications, “Caring Advice for Caregivers: How Can You Help Yourself?” and Caregiving for Your Loved One With Cancer.
Our free Connect® Education Workshops provide helpful, practical information:
- Survivors Too: Family, Friends, and Loved Ones – Managing the Fatigue of Caregiving
- For Caregivers: Coping with Holidays, Special Occasions, and Birthdays, Throughout the Year
Family Caregiver Alliance is an organization that focuses solely on the needs of caregivers. They offer many resources on their website including the section, Caregiving Info & Advice, various publications and fact sheets, and educational webinars such as Caregiving 101: Exploring the Complexities of Family Caregivingiving.
The Caregiver Resource Directory includes chapters about symptom management at home and the goals of care in progressive illness.
Another helpful resource is the American Society of Clinical Oncology’s publication, Advanced Cancer Care Planning: What Patients and Families Need to Know About Their Choices When Facing a Serious Illness, which may be downloaded from their website or ordered free of charge.
Caregivers have their own unique set of needs, and although you do not have cancer, you are living with the disease every day. You may find speaking with a counselor or joining a support group for caregivers helpful. CancerCare offers counseling as well as online and telephone support groups specifically for caregivers. You may also want to listen to our Connect Education Workshop, Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally.
Q. Three weeks before the holidays, my father was diagnosed with advanced cancer. Hospice care has started but I find it isn’t enough and other family members who live in town really don’t offer help. Some days seem too overwhelming - how do I focus on everyday activities?
Depending on your particular family and faith traditions, there can be a lot of expectations at this time of year, many of them focused around finding joy in the season. When illness or grief interrupts those expectations, it can be difficult to manage.
Be kind to yourself during this time, and consider what is truly important to you now. That can require you to adjust your expectations about everything from shopping to housecleaning. Make a list of those things that you truly enjoy and decide which of those traditions you would like to retain. Give yourself permission to “pass“ on those traditions that generate stress or involve a good amount of effort
This may also be a time that you can ask others to provide additional support. This can include a conversation with the hospice social worker concerning what other services may be available. You might use the services of a hospice volunteer or have the ability to engage additional home care supports on your own.
While it would be ideal for family and friends to volunteer their help, it may be necessary to ask them. Consider whether there are specific tasks that you can ask others to perform which can provide you a break from the day-to-day demands of care giving. Is there someone who can stay for a few hours, offer to go to the market, or bring your father to a scheduled appointment? Many times family and friends would like to help but are at a loss as to how to be helpful without being disruptive to routines.
An additional resource you might find helpful is our Connect Education Workshop, Coping with a Loved One’s Cancer During the Holidays.