Being a care partner is one of the most physically, emotionally and spiritually draining roles you will ever play. It is a 24/7 job that is oftentimes thankless and without much external reward. You have to dig really deep into your soul to be able to face the challenges, day after day. It seems like there is no respite, no fun, no escape. But it doesn’t have to be that way.

It is vital for you to create and maintain boundaries. This is not only acceptable and reasonable, but it will help you cope and survive over the weeks, months and sometimes, years of life as a care partner. It is perfectly okay for you to admit that there are some things that you just cannot…will not… or are unable to do. That doesn’t mean that you don’t care about your loved one. It doesn’t mean that those tasks aren’t essential to the well-being of your patient. But you don’t have to think that you need to be 100 percent responsible for every nuance of care that goes on day after day after day. That would be unreasonable. That would be exhausting. That would be deleterious to your own well-being.

So how do you set boundaries? In the early stages of your loved one’s diagnosis and treatment, it is always about the patient and their needs. It is normal for everyone’s physical and emotional energy to be focused on the patient. Once, however, the acute phase of that illness is addressed and treated, the larger picture becomes one of the day-to-day long term living with the aftermath and chronicity of the condition. Life changes. Spirit changes. Career changes. Income changes. Emotional changes. Physical changes. Social changes. The list goes on and on. How does the care partner cope?

Most importantly, you first have to identify your own physical, emotional and spiritual needs. This identification of personal needs helps you validate them and accept the fact that these needs cannot go unmet for long, before you begin to de-compensate, with a plummeting of your own level of wellness. Recognizing that you also have needs will help you focus on getting those needs met. Guilt is not part of this process. You cannot be a capable care partner if your own needs are not met. That concept is basic Psychology 101. By identifying your own needs, you begin to see your own limitations and your own strengths. It will help you focus on what you are willing and capable of giving to your loved one without putting your own wellness at risk. This is a matter of self-preservation. You need to fight really hard not be brought down by the physical and emotional components involved in being a care partner. Once you identify the things that you can and cannot do, this helps you set boundaries in your care partner relationship. You can breathe easier knowing that you have re-established what you need to be good to yourself as well as being a good care partner. But where does that leave your loved one? How will their needs be met if you are unwilling or unable to meet them?? How will they cope with the boundaries you have established?

If possible, this is a conversation that you and your loved should have together, perhaps with all relevant family members. Consensual agreement about needs and how they are best met is an important part of the conversation. Needs that you or others think are significant may be of no significance to your loved one. That eases your burden considerably. Discussing and identifying what needs your patient can meet for themself is a great way to promote empowerment in that person. Having autonomy over one’s own care as much as the medical condition will allow, and being offered opportunities for such self-care activities, can provide your loved one with a renewed sense of purpose and power. And it gives you a break!

It is critical to include other family members or significant others in the care partnership. No family member can shoulder the entire responsibility…nor should they be expected to. Even when relevant family members live in different localities, there can be sharing of ideas and related tasks, such as necessary phone calls, medication renewals, bank and other financial communications, insurance inquiries, opportunities for respite, etc. Family or other significant others can help you maintain the boundaries you’ve set as a care partner. In business, you hire to your own weaknesses. The same is true in a care partner relationship—you can also “hire’” to your own weaknesses.

One thing I have learned in life is that if you don’t ask, you don’t get. Asking the right questions to the right people will usually get you the right answers—or at least a referral to where those answers can be obtained. I’ve also learned that when others offer to help, you should be assertive and tell them exactly how they can help. Don’t just thank them and say, "I’ll see." Keep a list of the names and phone numbers of people who have reached out to you in an offering of help. Tell them what the needs are (both yours and the patient’s) and get them onboard. This will allow you to maintain the boundaries that you have set for yourself in the care partner relationship. People truly want to help. You need to tell them what the needs are. It’s wonderful when others embrace you at your time of greatest need. It lets you know that others care and are willing to help. It lessens your feelings of isolation and oftentimes, despair, which are normal emotions given the circumstances you may find yourself in once you assume the role of care partner.

There are a lot of resources available in your community and on the Internet where you can also ask for help in getting your loved one’s needs met. Some of these include: doctors' offices, social service agencies, nursing agencies, faith-based organizations, Google searches, the American Cancer Society, www.PatientPower.info, www.PatientAction.com, Internet communities of others with similar situations, etc.

May your week be filled with good thoughts, kind people and happy moments,

Lorrie Klemons, RN, MSN

Co-Founder, PatientAction.com,

Patient Power Care Partner Guest Contributor