One of the things that often happens when a person faces major illness or injury is a loss of control. The body does not work the way that it used to, sometimes temporarily, sometimes forever. When that happens, the patient often experiences feelings of fear, anger, and frustration. To compensate for the loss of control it is common for patients to try to reestablish feelings of empowerment by exercising control over every aspect of their life that they can. Sometimes the patient may want certain things done in a particular way or at a particular time or in a particular order. This can sometimes present a challenge for the caregivers and family members who are supporting the patient.
One of my clients has a permanent disability that impacts her ability to speak and walk. Something that I have noticed in my interactions with her is that she insists that many things are done in a particular way. For example when I drive her to an appointment she pays careful attention to the route I take and lets me know when she thinks I should drive a different way. I always change the route to the one she wants because I've learned that it is important to honor a patient's reasonable request for control of his/her environment.
If you are providing support and care for someone with a major illness or injury you may sometimes find it difficult to cope with the demands of the patient in addition to all of the other responsibilities you manage. Speaking from my own experience with caring for my late husband, it is not always easy to do. Sometimes what the patient wants may seem unnecessary or even unreasonable or unfair. However, allowing the patient to have control over their environment and body is an important right that should be honored. To deal with this challenge, I have found that it is critical to strike a balance between the patient's desire and the caregiver's ability to honor those desires. It's not a simple thing.
As I often recommend when dealing with healthcare challenges, it is important to choose your battles wisely. It is easy and reasonable for me to drive to appointments on the route that my client requests; it poses no hardship and it gives her a sense of being in control so I do it. However there are other requests she makes that I cannot honor. For example she prefers to walk with a cane outside the home instead of using her wheelchair. Since some of her appointments are in locations without parking nearby, it presents a safety concern for her to walk several blocks in a hilly San Francisco neighborhood crossing busy intersections. So I insist that she use her wheelchair for those appointments rather than walk with her cane. I don't like telling her she can't do what she wants because I understand it must frustrate her. However, I know that if she fell while walking on an uneven sidewalk we both would feel much worse.
I find one way to help make these challenging interactions go more smoothly is to talk to the patient about why they want something done a particular way. You may find there is a compromise that could be reached that will still allow the patient to have things partially the way that they want. So, for example, I make sure my client brings her cane as well as her wheelchair on appointments so she has the option to use her cane while she is in the exam room and leave the wheelchair in the waiting room if she wants. Look for creative ways to partially accommodate the patient's desires when possible.
Another option is to place the blame for not honoring the patient's desires on a neutral outside force. For example I often let patients know I can't do something because my insurance provider won't allow it. That can help soften the denial of their request. As another example, you may remind the patient that what they want does not comply with the doctor's orders. That puts the contention away from you and no longer has it be about your opinion.
It is important to remember that if the patient in your life suddenly becomes very specific about what they want and how they want things done that this is a normal part of the process of coping with illness and injury. It's critical to listen to the patient and honor their requests when it doesn't present a safety concern or undue hardship on you. The best way to figure out the balance is to have regular communication about it. The more the patient and caregiver can understand each other's point of view, the easier it will be to find solutions to the conundrum.
Story shared with permission.