A gentleman wheeled his wife into the area of the cancer center where I volunteer, to sign her in for a PET scan. After she was taken back, he came back to the front desk and ask me if the hospital had any support for caregivers. He looked almost furtive, even embarrassed, to be asking! I told him there was a caregivers’ support group that met once a month at a local civic center. I could easily see that he rejected the notion of a caregiver support group, out of hand. Typical! Lots of people (especially men), even if they are stressed-out to the max, still aren’t interested in joining a support group. I get it. They say they don’t have time, they don’t want to be around others telling their own sob stories, they are uncomfortable speaking out in groups, yada yada…….
So, I backed off and asked, “What do you think would help you?” He blurted out, “I just need to vent!!” OK, I get that, too. Lacking the time and privacy to really sit and talk with him at length, I had two suggestions: First, find a friend that he can be “real” with, so that when he gets overloaded, he can call and have a five-minute, stress-releasing, full-on rant – without the conversation getting back to anyone whose feelings will be hurt by it. Second, check to see if his insurance benefits include getting a few sessions of individual counseling. (And, no, just because you go see a therapist doesn’t mean you are admitting you are a basket case. It just means that you recognize that, to be the best help you can be to your loved ones, you could use a little time to just focus on what you need.) Most health plans these days cover a series (e.g., 4-6 sessions) of counseling. Just a few sessions spent with a professional therapist can not only provide a much-needed place to vent, but also a resource to get some useful coping suggestions and tools to help you, as you continue this journey of living with the cancer of someone you love.
The encounter sparked the subject of this next blog. And I am writing it most specifically to the guys out there whose spouse or partner, adult child, mom or dad, or a good friend has need of a caregiver’s support. (I am in no way saying that gals in this same situation aren’t facing the same load of very stressful issues; I just think we women are generally better wired to take on the role of caregiving, and better experienced with seeking out and getting emotional support when we need it, without worrying that they will show weakness by doing so – not always the case, but certainly more often.)
You have become “caregivers” by default, when someone you love was diagnosed with cancer. No one really prepared you to take on the task. All-of-a-sudden, you are a caregiver! You are frightened your loved one will be taken from you, you want your loved one to feel supported by you but are unsure how to make that happen, and you don’t know what will be expected of you. Most of you are employed, and are juggling job responsibilities with this new caregiving role. And caregiving can be, often feels like, a full-time job! BC (before cancer) life goals and priorities are in a re-set mode. AD (after diagnosis) realities are day-by-day and unpredictable. And you are trying as best you can to manage your time between work, other home obligations, and a sick loved one’s needs. What to do? To begin with, I suggest three tasks.
Task I. Talk with Your Loved One.
Really talk. Determine the “must do’s” that you both agree are priorities, the things that are “core” to your life together. (If you find this an easy task, let me know, because everyone else wants to know how to get this done without a lot of soul-searching.) What absolutely can’t be allowed to fall through the cracks? What are the vital parts of your life that you want to preserve and prioritize, no matter what else happens? This is a hard conversation. But here is what you gain by doing this: It gets you both on the same page as you begin living with cancer. And, hopefully, also allows your loved one to communicate what she (or he) needs most from you right now. Illness, fear and worry are evils that contrive to disrupt and divert communication. Don’t let that happen.
Task 2. Write a “job description”
Based on Task 1, and on your other roles and responsibilities, list what needs to be done daily and weekly (to be revised as needed, as your role evolves in helping your loved one). If you are a list-maker, this is will be easier than it will be for others. If you are not, role your eyes, but do it anyway – because you will find it invaluable going forward. First, list what you need to do to keep on top of the core things you and your loved one talked about in Task 1. Then, after examining what flexibility you may be able to have with your job and other family responsibilities, add to the list all the things that your job and home demand of you. Then, add to the list the things you need to do in your new role as a caregiver. The list may include going to all doctor’s appointments to be a second pair of ears to hear what is being said; scheduling appointments for doctors and procedures and lab tests, and making sure that they are kept; providing transportation; managing medicines; grocery shopping and meal planning and preparation; household chores; getting legal documents in order; dealing with insurance claims, etc.
I know that this new job description is going to look impossible, but it is better to wrap your mind around the whole scope of what is going to be expected of you, so that you can plan creative ways to get it all done. It will allow you to be proactive rather than reactive — a huge step in getting control, in this out-of-control time.
Task 3. Optimize the Use of Concerned Loved Ones and Well Wishers
You’ve heard this before: delegate. Acknowledge that you have a “home team” of people who want to help. Here is a wise cancer patient’s quote: “I had to learn that to accept help is to give a gift to the one helping.” It is true! When family and friends ask how you are doing, and what can they do to help – get out your list!!! Usually, they can’t help with your responsibilities to your job, but they can very often, very willingly, help with almost everything else. And, if you can give them specific tasks, you will avoid having them do stuff that they think of as well-meaning, but really is more unhelpful than helpful.
And, find one of them to take on the task of keeping everyone else updated, either by e-mail or Facebook or Caring Bridge. You are too busy to spend hours on the phone telling all those concerned how the patient is doing. Your caregiving responsibilities going forward are more than likely going to grow. Establishing this network of family and friends and well-wishers is your safety net, so you don’t end up doing a high-wire act solo.
So that it is it – Three not-so-simple tasks. But worth the time and effort.
And, to finish I would like to give you my own list of things I think may be helpful to each of you:
- Look up every tip you can find (that resonates with your situation) on how to communicate effectively with the cancer doctors and other oncology care professionals. Doctors need to know your concerns and needs, as well as your loved one does. Make sure you are told what to look for that would be cause for you to contact them in between appointments. Make sure you have good contact information for emergencies and non-emergencies.
- Organize the medical information and insurance claims information, so it is up to date and easy to find. (Use My Notebook’s section on “Getting Control” and “Getting Organized”.)
- Maintain an up-to-date medications list so you have a chronological record of what is prescribed, by whom, and when it was started and when it was stopped. There is a template for a med list in “Getting Organized.”)
Get legal documents in order. - Take care of your own health issues – both physical health (adequate sleep, nutrition, exercise, and regular check-ups); and emotional health (read the companion blogs, “Being Well While Living with Cancer” and “Coping Techniques to Deal with Chronic Stress”); and mental health (watch out for signs of depression in yourself; don’t delay getting professional help when you need it).
- Forget the knight in shining armor and all that nonsense about being able to slay dragons. This is probably the most vulnerable time of your life. You need to be strong, so you can help your loved one to be strong.
- Find ways to take respite breaks by relying on your home team. Pick one friend you know to whom you can “vent” without hurting anyone’s feelings.
- Let yourself “connect” with other people who are going through what you are going through, when you encounter people who have the same positive attitude that you hope to maintain. Steer clear of the others!
- If you feel like you have dropped the ball trying to juggle caregiving while also working and taking over the role of the sick loved one for your children or parents – forgive yourself and move on.