Teammate & Caregivers Guide

A - Support Team & Caregivers

Precious and Vital

Thank God for the support team and the caregivers. No one can run a bell lap without you – crawl may be, but not run. You are the true friends; you are ever so precious. You are the encouragers, the listeners, the pacesetters, the nurses, medics, coaches and counselors. You offer the certainty that there will be a witness to their lives – that they are valued.

You will find yourselves collectively on the track, running the lap right alongside the cancer patient. You have got to keep up or lead; if you fall behind, you’ll slow the runner down. So, you must treat this run as if it were your own bell lap. And that can’t hurt. You’ll be in better shape if and when your own turn comes if you have run a practice lap. Until then, the rest of your life will be richer for having done so.

Even though you are not the patient, you may go through some or all of Dr.Kubler-Ross’ stages of reaction to terminal illness with them or on your own: denial and isolation, anger, bargaining, and depression before reaching the acceptance that allows you to run free. Be alert to what each stage might look like; be intentional in dealing with each one so that you can help the cancer patient do the same. Every stage is disconcerting, but living through them is easier with a companion. Be that companion, but don’t be mistaken into thinking that’s all you are. If you can really imagine yourself facing your own death, you may be able to take your own spiritual journey to new depths and heights, and become more than a caregiver -- maybe a virtual runner, maybe a pacesetter.

One person cannot do it all. An effective caregiver must marshal a team early and keep every member involved, even if only in small ways, right from the beginning. It is far better to have a few of your teammates complaining about riding the bench on the sidelines early in the game than to be shorthanded going into the fourth quarter.

One thing that is often overlooked but that you can and should do early on is to construct a care plan that will enable everyone to stay the course. Compassion fatigue is very real and affects every caregiver sooner or later. It is hard to see it coming. It grows insidiously and chips away at your resolve to do what you have intended. The longer the course, the rougher it gets, the more you are needed, the more likely that burnout will take its toll. The antidote to this is to make your care plan specifically provide for relief for yourself by planning and requiring rest, diversion and refreshment. Above all, don’t feel guilty about providing for your own and other caregivers’ needs. This is essential if you are to be effective and persevere.

Caregivers are no better prepared for their role than the sick are prepared for theirs. The challenge for both is to keep the care-giving and the illness in their proper places. This is hardest when your efforts go unnoticed, invalidated and unrelieved. You need a team to validate and support each other.There are multiple fine caregiver resources http://HelpForCancerCaregivers.orghttp://CaringInfo.org to guide and encourage you all.

Be intentional about taking care of yourself for the patient’s sake. Take time-outs -- run, ride, read, walk, nap. Do all the things that feed your own soul and fill your love tank so you can be and do your best. Pace yourself by sharing the load with other team members. It will be richer for everyone. Every race has a home stretch and every care-giving team needs to be fit and prepared for it; there are always unforeseeable challenges.

And don’t be surprised or feel guilty if the person you are caring for turns the tables and winds up caring for YOU. Let it be. It may be their way of thanking you or redressing past disharmonies when they can’t say the more difficult words. 

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B - Caregiver Teammate Role

Go With Them

When cast in a patient role, we are all somewhat discombobulated. Our normal faculties become compromised in unpredictable ways. The foreign medical environment is disconcerting to everyone, often compelling them to surrender much of their time and autonomy. This is when an attentive caregiver/team member who goes along to appointments  can run interference by reporting symptoms, representing needs, taking notes, gathering information, keeping the calendar, managing the schedule and listening, listening, listening. Later they can be an invaluable source of facts and perspective for both the patient and family.

I encourage patients and caregivers to be assertive with the medical community: Ask lots of questions and hard questions. Press through for the hard answers. Press past the change- of- subject- sidesteps some physicians use on the hard issues. Press until you get an answer, or an "I don't know.” Then ask, "When will we know?” and “Will we ever know?" or “Who else should I ask?”Take a tape recorder with you and just turn it on at the beginning of the visit. Many patients do this because the doctor’s office is often a stress induced brain-dead zone. 

Working memory is what we use to manipulate new information so it can be integrated with remote memory. The average individual can only juggle 6 – 10 new bits of information before adding another will cause one to drop off. In my experience this number decreases with stress, foreignness of the information, age, and pain medications.

As cancer information is all new, it will be displaced rapidly. Emotionally charged information displaces information that is already on the bench even faster. If data is not understood, categorized and integrated, it is not transformed into long-term memory. Instead, it is lost. When needed for decision making 12 – 15 bits later, you are out of luck. Caregivers can collect their own 10 bits and hang on to them better when they are less emotionally involved, but a tape recorder gets it all.

The recorder can be particularly valuable to playback for absent family members who may have a role in decision-making or simply need to be accurately informed. When I have spoken to family about what they have been told by the patient regarding our office visit, I have been astonished at how little of what I have said made it home accurately - or at all.

This can be critical when it applies to how to take medications. A recording can supplement a written record. It is a good idea to keep a small ring binder with two sections, the first for recording home data and the second for physician/office/hospital data. It that can travel to each appointment with the patient and be passed from teammate to teammate to serially record specific physician instructions.

If the caregiver takes the notes it lets the patient focus on what the doctor saying. Then the binder can be used at home as a log for recording side effects and symptoms, questions for the next visit, the use of pain medications and their efficacy over time. All of these are often forgotten by the time the next physician’s appointment rolls around.

The caregivers can also post their patient's status and key bits of data on to keep family and friends up to date and to save the patient from having to repeat and explain the same information repeatedly - which may be exhausting and plunge them back in the misery of constantly revisiting their disease state.

C - Caregiver Role Expanded


Recruit others to read in this book about the issues patients encounter coming off the starting line and through the near corner so you all can help your patient deal with feelings of denial, fear and anger by asking questions as well as being a sounding board. Some disappear into themselves and a black hole of sour feelings and need to be drawn out to understand and process all they are feeling. Help them put a face on their fears (faces of the dragon) to give them a  target to deal with.  Keep your fears to yourself, they don't need them.

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