Tips for Caregivers of Loved Ones with Chronic Pain

Alice Francis and her husband Alan had always been a dynamic and evenly-matched couple. They both worked in high-energy careers that they loved; they traveled the world together; they exercised together regularly, and led extremely active lives. When Alan’s first flares of chronic back pain prevented him from keeping up with their fast-paced lifestyle, Alice quickly realized that their relationship was about to undergo some drastic adjustments.

 

“This transition has been life-changing,” she admitted, “and although I wouldn’t want anyone to have chronic pain, I have learned a lot of lessons regarding pain care and advocating for my spouse in this ‘adventure’ ”.

 

Alice does not like referring to herself as her husband’s “caregiver”, but it is an apt description of the role she has had to fill in Alan’s health care management. As her husband’s treatment progressed through office visits, complex pain regimens, and four corrective surgeries, Alice has taken on an active role in helping her Alan to manage his chronic pain. In the six years since Alan’s degenerative disc disease was first diagnosed, Alice has learned to be an effective champion of her husband’s medical care while maintaining her own positive outlook on life.

 

Thousands of spouses and children of pain sufferers find themselves in Alice’s position every year. Becoming involved in the care and treatment of a suffering loved one is a natural and loving gesture, but it can easily take its toll on even the most patient caregiver. Here are some of Alice’s tips for others who are caring for loved ones suffering from chronic pain.

 

Selecting doctors

  • After you or your partner have researched several doctors, set up “appointments/interviews’ with your top 3 choices.
  • It’s a good idea for you as the partner/caretaker to attend these appointments so that you have two sets of ears. It’s amazing how things can be interpreted differently between the person who is in pain and the person who is there to support!
  • This sounds crazy, but I suggest you and the pain patient dress nicely for the appointment. We have found we are definitely treated with a higher level of credibility and respect.
  • Let the doctor know that you are deciding what will be the best match in terms of a relationship with a new doctor and you have some questions as well. Sometimes I asked the questions and sometimes my husband did. It really depended on his pain and anxiety level that day. If a doctor is reluctant to be “interviewed”, that should tell you something.
  • Take notes! It is very important in all appointments, quite frankly.
  • Here are some good questions to ask at an initial interview:
  1. How long has the doctor provided pain management?
  2. Does the doctor give injections, and if so, where were they trained and what is their general outlook on patient injection needs? (In our experience, doctors who were trained via Mayo Clinic will give only 3 injections per year. Doctors trained in other programs are sometime more open to assessing the number of injections based on the need of the patient.)
  3. What is the doctor’s general philosophy on pain management? If they don’t have one, that’s a red flag.
  4. How many doctors are in the practice? Will patients generally see the doctor or the physician’s assistant?
  5. How far in advance do you need to make an appointment?
  6. Who is the contact when you are unable to reach the doctor?
  7. Will you be able to get copies of all medical records and appointment notes? (I always request this on a monthly or quarterly basis. It’s important to see what the doctor’s interpretation of the appointment was, which can be quite different than yours or the patient’s.)
  8. Has the doctor ever experienced long-term or chronic pain? Although this isn’t a deal-breaker, the doctor’s firsthand experience is a plus. They will most certainly have a high level of compassion and understanding for what the patient is going through.

Alice stresses that finding the right rapport between a doctor and the patient is extremely important, since this doctor-patient relationship could potentially last for years. She found that helping Alan to be proactive about his own emotional needs made it easier to find doctors who were a good match for Alan. “At the beginning of our pain journey, it was very important for my husband to explain to a doctor who he was before pain. He wanted them to have a glimpse of what his life was like before this happened. He was struggling to deal with all the changes going on, and needed people to know that he hadn’t always been the ‘patient’.

 

“Some doctors were very attentive during this dialogue. Others were very dismissive and condescending. Their reaction was almost always a sign of the care and compassion to come. I suggest the patient or caretaker come up with some brief summary of activities and interests prior to the pain and see what kind of reaction you elicit.”

 

Providing care for your loved one

  • Carry a list of all medications and amounts the patient is taking. If there is an emergency situation, it will be necessary to provide the EMT’s or other medical help with that information
  • If you live with the patient you care for, be observant as to what time of day they take their meds. Make it clear that this isn’t policing, but rather just another set of eyes. When someone is in chronic pain, memory can be affected, and it’s just good to have a general idea of your patient’s pattern of medication use.
  • Get to know your pharmacist. I know our pharmacist very well. In fact, I can call the pharmacy and say, “It’s Alice”, and they know who I am! It’s important to build a rapport so that you can ask questions and receive the best customer service possible.
  • LISTEN to your loved one! This was VERY difficult for me to learn. When he would complain about the pain or express frustration, I wanted to ‘fix it”. Listening was not part of my plan. Many times, he didn’t want me to fix anything. He just needed me to say, “That must be really hard”, or “ I’m so sorry you are having to go through this”. Understanding and improving our communication has helped both of us a great deal.

 

Alice offers further perspective on the changing relationship of chronic pain patients and their caregiver companions. “My husband went through not only a huge physical adjustment to dealing with chronic pain, but an equally large psychological adjustment. Without work or exercise or the ability to live an active lifestyle, he just didn’t know who he was anymore. I went through a similar adjustment, I’m sure.

 

“Acknowledging this transition, and how hard it must be, was very important for both of us. Be patient during this time, because your loved one really needs to feel vital and normal. Strongly suggest to your loved one they go see a therapist or psychologist to work through these issues. It can be a huge help to you both.”

 

Take care of yourself

“Of all the things I have done in my life,” says Alice, “taking care of or being in a relationship with someone you love who is in chronic pain is by far the most difficult. In the beginning I felt like my good days were completely dependent on his good days. That’s no way to live.

 

“You do need to provide love, compassion, sometimes some physical and mental support. But you also have to realize that you CANNOT fix or change the situation. You can’t make the person take meds or not take meds. You can’t do physical therapy for them. You can’t take the pain away so you just have to let it go. “I developed a sense of normalcy around all of this. I have a career that I love-- it keeps me very busy. I go shopping and traveling some with girlfriends. I exercise on my own, and do things just for me. This new ‘normal’ life really helps provide Alan with a sense of ‘normal’ as well. I strongly encourage you not to forget about you in this process.”

 

This article is summary and companion article to Taboo Talk's April 6th (2011) radio show/podcast.

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