Published on May 15, 2015
Care partnering is exhausting. It annihilates your days and trumps your sleep. Its paradoxes require the most delicate of balancing acts between negative thoughts and a positive attitude; of knowing when to establish control and when to relinquish it. It even tampers with your feelings of guilt and love. Care partnering can be isolating.
My friend and colleague, Esther Schorr, has written beautifully and passionately these past two weeks, sharing a glimpse into her world as Andrew’s care partner, wife, and business partner. Many of you no doubt read between the lines that her words resonated with the life you now live as a care partner. Although my husband is now gone, I remarked to her at one point that she had reawakened feelings and memories I had begun to forget. Being a care partner does that to you: it consumes your days and subsumes your life.
But you have a choice: take pity on yourself and expect the same of others, or get perspective, as Esther says.
Perspective is a viewpoint, a measured evaluation. When you have perspective, you are in control of the situation; the situation does not control you. This allows you to practice acceptance and to find whatever silver lining suits you and your partner. It is from this perpetual exercise of measured evaluation and acceptance that your positive thoughts will flow. When you are asked for the thousandth time how things are going, you will be able to honestly answer that you and your partner are going to be okay. Because you are. You have made that decision.
Perspective is also proportional. Everything is not fine, but neither is it unbearable. Life’s difficulties are relative to our dysfunctions. For example, a teacher with good communication skills will find lecturing much easier than a teacher who struggles with public speaking. The trick is to find coping mechanisms that ease the struggle. In our example, the teacher who lacks public speaking skills might find guest lecturers or employ various media outlets to mitigate her speaking responsibilities. She stills has to lecture—but not as often—reducing her stress and allowing time and effort to be focused on her own set of skills.
What are your skills? Do you exercise and eat right? Do you tend to focus on the positives? Perhaps you find humor in a lot of things. Or maybe you know how to set limits and stick to them. These are your strengths. Use them to set expectations for yourself, your partner, your family and friends, even your medical team.
Are you a worrier? Do you approach difficulties with apprehension and passivity? Learn to say, “Yes!” when offered assistance. Join and attend a care partner support group. Give yourself permission to “Take Two”: You take two stress-free minutes and take a mental vacation, breathe deeply, stretch and choose to relax.
Perspective also comes from the act of assessing. Assessment requires intent of action. It is calculated and considered. This is the practical side of being a care partner. Those of you with exceptional organizational skills will excel at this. For those of you less functional in this regard will be challenged, and you may need outside help. Getting organized and staying organized will alleviate some of the stress associated with assessing all of the moving parts that are part of being a care partner. Although not comprehensive, the following list may help you in your quest to achieve or to remain organized with your partner’s health concerns:
- Create a running list of all your doctors with their name, contact info and specialty. I collect business cards from every doctor ever visited and keep them in a card file.
- Create a list of all medical procedures with dates, preferably in reverse chronological order (latest on top).
- Become an expert on your partner/loved one’s insurance policies: medical, dental, vision, auto, home, life. If CMS (Medicare/Medicaid) is involved, be prepared to have some long phone conversations. You are expected to know patient rights and expectations. Hospital social workers are superb resources for this.
- Know every drug, including “over-the-counters” (OTCs), that your partner/loved one takes: name, quantity, time of day the drug is taken, what it is for, and who prescribed it. Research contraindications. Get to know your pharm tech and pharmacist. They have access to a large database of subsidy and grant information.
- Have a calendar dedicated to medical appointments and take it with you to every appointment.
- For some states, you should obtain Durable Power of Attorney (DPOA) even if you are the spouse! In some states, DPOA trumps spouse. It’s usually free to have the paperwork drawn up, and you will want to have it notarized, preferably by the notary on staff at your main hospital.
- If you are not the partner/loved one who runs the finances in your home, start learning about everything: mortgage, banking, business, retirement, investments, car payments/tabs, etc.
- Start collecting all of the website user names and passwords in one book. I keep all of mine in a journal created by the same people who write the “For Dummies” series.
- Have the talk about Wills & Testaments. Know what it says, where it resides, and who your lawyer is (including contact information).
- While it will be hard, have the Advanced Directive conversation. DO NOT put it off. Have it more than once. Be confident of your loved one’s wishes. These are not decisions to be made while under the stress of end-of-life care or grief.
- Ask your partner/loved one’s doctor for information about palliative care and hospice. Use of these programs do not necessarily indicate the end of life; rather, it is patient-directed comfort care. Some doctors may discuss a POLST sheet with you also. If you have questions, it’s never too early to ask.
- Decide ahead on funeral arrangements, and then make them. Again, it’s never too early to start. I knew my husband’s wishes, but I had failed to make the necessary prior arrangements. You cannot imagine how difficult it is to have this discussion less than an hour after your loved one has passed.
- Make a list of all the things that need to be done around the house including errands. When friends ask how they can help, you won’t have to remember what needs to be done. If this is too stressful, ask one person whom you trust implicitly to run interference for you. They can help organize the well wishes and offers of assistance.
- Find a person or group with whom you can be totally honest. Schedule time to talk to them. Tell them about how lonely and isolated you feel. Share your frustration and resentment. Talk about the future and your fears.
We all hope for the best. We desperately want our loved one to get better, and some days will be better than others. Enjoy these moments and capitalize on them. The hard reality is, though, that your loved one’s health is now central to your daily living. And health is not a given nor a certainty. Make every moment count. My husband’s health slowly declined over the space of five years. During that time, I focused on making him comfortable, making memories, and living with no regrets. It’s been three years now since he passed. I may not have him anymore, but I have a lifetime of sweet memories and absolutely no regrets.
Standing in the storm, adjusting my sails,
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Your site is AWESOME! Thank you all so much for this incredible resource to families who are in crisis/affected by cancer.