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Caregivers: The Most Important Care Providers for Cancer Patients

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Behind every patient with cancer, there are caregivers. In the medical literature, this caregiving is referred to as “informal caregiving,” which simply means that it is not paid caregiving from a home care agency or care provided in a skilled nursing facility. Informal caregiving provides the majority of care to patients in this country; if informal caregivers were paid, their value would exceed that of all home care agencies and skilled nursing facilities combined.

What do caregivers do?

The better question is, what are they not doing? In a 2010 study from the University of Minnesota and NCI, caregivers of lung and colon cancer patients were surveyed regarding their activities and stress and resources; these were caregivers who provided 50% or more of their loved one’s care. What they found was that caregivers, without formal training, were having to monitor for treatment side effects, manage troublesome symptoms like pain and nausea, administer medication, and decide on when to call a doctor or give medication. This is evident here at GRACE with the very thoughtful questions and discussions that caregivers have on behalf of their loved ones. Half of the time, these caregivers were also working their own jobs; 1 in 5 had health problems. In studies of caregivers not specific to cancer, caregiver stress leads to more healthcare, both for themselves and for the loved ones for whom they care. In comparing caregivers to people who don’t do caregiving, caregivers of patients with cancer have a higher incidence of mood disorders, i.e. depression and anxiety, as well as stress-related health problems. Compared to caregivers of patients with Alzheimer’s, a disease known to carry significant caregiver burden, caregivers of cancer patients experience the same amount of psychological stress.

Strategies for Caregiver Stress Management

Clearly caregivers carry tremendous burdens at times, but also find tremendous meaning and joy in being able to give to their loved ones. However, as the proverbial flight attendant advised before take-off, “please place your own oxygen mask on first, then tend to others around you.” This applies in spades to caregiving. Caregivers need to care for themselves in order to care for others.

Ask for help

I mention this, not to state the obvious, but to consider sources and strategies for help.; caregivers are notorious for not asking, putting their loved one’s needs ahead of their own. First of all, let your loved one’s oncology team know; sometimes there are resources within their practice or their cancer center that can help with identifying basic practical resources (equipment, for example). Consider tasking out what you spend your time doing and then see what others can do instead of you. Often, people will come to you asking to help, and it is often easier to dismiss them (kindly) than think of things on the fly. There is no reason to answer inquiries immediately; take some time to identify tasks and assign them. The flip side of this is that there may be close friends or family who are having trouble getting involved in helping; people have lots of reason for this, and it is sometimes difficult to discern why. However, know that people cope in different ways with challenging situations; some will surprise you and help out when you don’t expect them.

Have your feelings, or they will have you

Cancer is a life-changing diagnosis for your loved one who has cancer, and for you as you care about them and for them. Just as your loved one can go through emotional responses with their cancer, so can you. This is normal and expected. It can often help to share these with a trusted friend or a counselor. There are also resources such as support groups that can provide a community of folks who are facing similar issues.

Take care of yourself

I know this sounds painfully obvious, but I don’t think I can stress this enough. This certainly includes taking time out for yourself on a regular basis, but also getting to do your regular personal maintenance-things like going to see your doctor for your own check-ups, going to the dentist, getting regular exercise and sleep, etc. These are key basic elements of personal care, but are often set aside when one gets busy with daily life, and more so when the stress of cancer enters the picture. I would go one step further and recommend getting to do something you enjoy that is just for you, since I’m not sure too many of us enjoy going to the dentist-it doesn’t have to be anything monumental, even just eating your favorite meal, going for a walk or run, or catching your favorite TV show. Know that you deserve it and it will help both you and your loved one.

For more information:

http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver

http://www.cancer.org/Treatment/Caregivers/index


10 Responses to Caregivers: The Most Important Care Providers for Cancer Patients

  • Laya D. says:

    Dr. Harman:

    Thank you for this very thoughtful post (and reminders). When dealing with a loved one’s illness, it’s so easy to be dismissive of everything else that is going on in life, including taking care of one’s own physical, mental and emotional well-being. Everything seems to just get back-burnered. The illness and treating the illness takes over. But, as you point out, it is important to put the proverbial “oxygen mask” on yourself first before tending to others. It’s a good analogy to remember. . .

    Thanks again,
    Laya

  • Dr Harman says:

    You’re very welcome. I’m glad it rang true. I’m always so amazed at what caregivers bear.

    -Dr. Harman

  • tanny says:

    What a great article/reminder Dr. Harman, thank you for sharing.

    Quick question, maybe it’s just me but the links don’t seem to be working? I think it’s a typo on the GRACE side, redirecting to a slightly misspelled URL. IT support anyone?

    I found looking after my mom got very challenging in the final weeks. But I was too exhausted to find ways to do things better. And there was the fact that we knew the end was coming and so you felt compelled to be there as much as you could. It’s definitely not easy but clearly having others around, helped. When I look back, I wish I knew what to expect earlier, but having said that, I don’t know emotionally if I would have been ready to receive that information. Very delicate situation.

    Thank you,
    tanny

  • catdander says:

    Thank you Dr. Harman for your reminders. It’s easy to forget about, well, almost everything at the moment. It took me 20 months, 30 pounds, and quite a few aches and pains to start taking care of myself again. I never would have thought I’d fall into such a trap, but there are so many factors involved in seeking out quick easy comforts that are so obviously bad for you. I’ve also wondered if guilt for being healthy or being the one who will live past this disease has anything to do with it (especially for spouses and parents).

  • admin2 says:

    > It took me 20 months, 30 pounds, and quite a few aches and pains to start taking care of myself again.
    I know from personal experience that taking care of yourself is difficult, when, sometimes, you can’t see the future. I delayed getting married as a young man because I wanted to be married forever. Forever and cancer are hard to reconcile.

    > I’ve also wondered if guilt for being healthy or being the one who will live past this disease has anything to do with it

    Yes, absolutely.

  • Dr Harman says:

    I’m not sure why the links aren’t working. Here they are again: http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver and http://www.cancer.org/Treatment/Caregivers/index.

    These are all great points you bring up. It is very difficult to see beyond what is happening in the present and to plan, especially with uncertainty. And even if someone is not ready to hear about a limited prognosis, it can be helpful just to give oneself some respite time so that your caregiving can be more sustainable. I tend to advise patients and families to err on the side of “too much help” but then peel back accordingly. The other thing is that getting additional help does not mean that you are not there as well; it simply means that at times, a caregiver should have the opportunity to be the spouse, the parent, the child, the close friend rather than that PLUS the nurse, the home health aide, the occupational therapist, etc.

    -Dr. Harman

  • Terryl says:

    I am not a caregiver, but I have come to realize, through my cancer diagnosis, how important it is to allow others to help us. I don’t know if it is just me , or an “American thing”, but when ever anyone asks what they “can do to help”, I never accepted their offer, stating everything is ” fine” and under control. After my thoracotomy I realised how much other’s really do WANT to help! Friends and family are feeling helpless much of the time, and allowing them to help me, actually helped them to deal with their own feelings about my illness. I know, the last thing I need to worry about is the concerns of everyone else while I am dealing with lung cancer ( or if I was a caregiver, caring for someone with cancer) but in this case, it actually helps all concerned deal with a difficult situation. I get the help I need, and those who love us het the “help” they need. Just this month I had to make 4, three hour ( one way) trips for SBRT. My husband had planned to go with me, but instead each trip was taken with a different friend or family memeber….we had lots of fun along the way, and I was so glad to have the time I spent with each of them. It took a tremendous burden from my husband who would have otherwise had to go with me every time ( even though the dear man never, ever complains when it comes to anything to do with my care). Sometimes we don’t even have to “Ask for help”..sometimes it is just waiting for us to allow it…..

  • Dr Harman says:

    Well spoken, Terry. I often tell patients that it is a gift they give to their loved ones by allowing them to help.

    -Dr. Harman

  • Dr West says:

    Sorry for the errors with the links, now corrected. My fault — Dr. Harman provides a perfectly good post, and when I move it to the blog software, it’s all I can do not to screw things up.

  • cmcintosh says:

    I sometimes have these feelings that creep up on me regarding feeling guilty for being healthy. I usually shrug them off cause I know they are natural feelings and my heart and mind tell me that they are rediculous notions but still they do creep in at times. I took up running and that does help alot. My husband is wonderful and has always supported everything I do and he encourages me in my new passion (running) and eating healthy. He would tell me to knock it off if he knew I had those feelings. He handles his cancer with such grace and strength, he is my hero. He goes to work everyday and does things around the house too even though he doesn’t feel good. He never complains at all! I am an RN in geriatrics and my husbands caregiver and I wouldn’t have it any other way. I know that every precious moment we spend together is a chance to make a memory. I pay really close attention now to the details of him. I know what I as a caregiver of a loved one with a terminal condition is, I can’t imagine what he faces in his own mind and thoughts every day. Thanks for letting me vent! Carla.

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