Welcome Home: Helping People Transition to Life After Amputation

By Miki Fairley
graphic of couch

Losing a limb is life-changing. How much life changes depends on variables that make the challenges facing each person unique. An amputation might be just a blip on the screen of life for some; for others, it may be like stepping into another world where even the most ordinary activities of daily life have to be rethought and relearned. The person undergoing an amputation is likely not alone in his or her transition. Not only is he or she affected, but to some extent so is everyone connected with that person, including his or her spouse or partner, children, other family members, friends, employers, and coworkers.

"The psychological impact of amputation can be just as significant as the physical challenges," points out Colonel (Retired) Paul F. Pasquina, MD, and colleagues in an article, "Ethics in Rehabilitation: Access to Prosthetics and Quality Care Following Amputation" (Journal of Ethics, June 2015, 17 (6):535-46). "The perceived loss of ability to engage in previous vocational, avocational, social, sexual, and leisure activities can play a greater role in post-amputation quality of life than the absence of the limb itself." Amputation can negatively influence body image, self-esteem, and quality of life. Returning to work can be difficult as well. However, the key to better outcomes is ensuring that patients receive appropriate and comprehensive interdisciplinary care for physical and psychosocial needs, with prosthetic care as a fundamental need, the authors point out. "Increased prosthetic usage is associated with higher levels of employment, increased quality of life, decreased phantom limb pain, and lower levels of general psychiatric symptoms. Additionally, prosthetic use has been shown to facilitate a reduction in secondary health issues and therefore a larger degree of mobility and functional independence for those with amputation."

Families and healthcare teams, including prosthetists and physical and occupational therapists, can do a great deal to bring about a successful, fulfilling life for individuals with amputations as they adjust to the changes in their lives. To garner insight into helping patients and their families with the transition, The O&P EDGE talked with several experts.

Carla Vollmer

Zach Harvey, CPO, Creative Technology Orthotic Prosthetic Solutions, Denver, is an experienced clinician who has provided prosthetic care for a range of patients, including hundreds of injured service members and veterans as chief prosthetist at Walter Reed National Military Medical Center (WRNMC), Bethesda, Maryland, and has authored textbook chapters and journal articles. Mona Patel, LCSW, who is employed by Hanger Clinic, San Antonio, is the founder of the San Antonio Amputee Support Group, and executive director of the San Antonio Amputee Foundation (SAAF). At age 17, she underwent a forefoot amputation-leading to a later transtibial amputation-after being struck by a drunk driver. University of Michigan Limb Loss Support Coordinator Carla Vollmer underwent a transfemoral amputation due to osteogenic sarcoma at age 13. She leads the university's peer support group, provides information and resources, and arranges peer visits between people with similar amputations.

Mona Patel and her daughters

Confronting Challenges

Unlike most people who lose limbs to dysvascular conditions, people with traumatic amputations sometimes suffer post-traumatic stress disorder (PTSD), Harvey notes. Additionally, fault could be involved with traumatic amputations, provoking regret and anger. "Dysvascular amputation is due to a disease process. If fault is involved, it could be because of a patient's pattern of self-neglect rather than an external source."

Patel concurs that experiencing shock and PTSD is likely with traumatic amputations and can be complicated by circumstances in which someone else caused the injury that resulted in amputation. "I remember having a lot of frightening thoughts about my perpetrator," she says. "Whenever I'd see a man remotely resembling him I remember experiencing anxiety and fear."

Unexpected Challenges

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"One of the main things people are unprepared for is the reality of the recovery and healing time," Patel says. "We all want to be healed and begin walking yesterday. When I do preamputation or post-amputation counseling, I always tell my patients that patience needs to become their middle names. I always begin by asking if they are patient people-many times, especially when family members are around, it becomes a joke and lightens the mood."

Patients don't always know what to expect regarding timeframes for their rehabilitation and mobility, Harvey agrees. Returning to work is affected by how quickly the patient is able to regain mobility. The number of appointments necessary for medical and prosthetic care, as well as for physical or occupational therapy, is also contingent on the patient's mobility and other rehabilitation progress. For that reason, "a discussion about timeframes helps to reduce anxiety and helps families plan ahead financially and for needs such as transportation and time off work."

Someone with a new amputation also often has to learn new methods for activities of daily living (ADLs) such as bathing, cooking, and cleaning, Vollmer says. "It doesn't happen overnight, and you can't plan for everything. It's a process."

Elizabeth Balcazar and children

Harvey's patient Elizabeth Balcazar, who lost her leg as a result of a motor vehicle accident, poses with her children, who are holding two of her prosthetic foot options. Photograph courtesy of Zach Harvey.

Home modifications, such as installing a ramp or widening doorways to accommodate a wheelchair, may be needed, Vollmer points out. "Suppose the patient's bedroom is on the second floor-how are they going to get up there? These are the things that people often don't think of, and they may need professional help in figuring things out."

Preparing for an Amputation

"It is imperative that amputees are treated holistically," Patel says. "The totality of every aspect of their lives should be addressed, including how family dynamics may change, resuming employment or school, and dealing with insurance, comorbidities, and other health issues." Patel lists some other ways to prepare:

  • Keep the patient's support system-family and friends-involved and informed so they too can prepare.
  • Communicate with significant others. Patel talked with her husband at the time about her options, their feelings about them, and how each choice might affect their marriage.
  • Enlist the help of other family members, friends, or church members to help take care of things until the patient gets back on his or her feet.
  • Meet with employers. "I met with my boss and HR to talk about my time off. I was able to secure an extra two months from the sick pool. If the amputee is working, it's imperative that they meet with their employers to ensure all the proper communications and paperwork have been completed."

Getting in shape prior to a planned amputation is important, Harvey says. "A strong body and good cardiovascular health will help during the recovery period following amputation. This is a good time to invest in a nice pair of forearm crutches and get comfortable using them. This also might be a good time to modify the home with grab bars in the bathroom, a shower chair, and wheelchair ramps if needed."

Harvey also suggests that patients and their family read preparatory literature that the patient's physician or prosthetist provides and talk with other people with amputations and their family members to learn more about what to expect. "Perhaps an employer will allow working from home. Setting up an ergonomic work station ahead of time may be helpful. Meal planning and chores around the house may fall on the rest of the family members' shoulders, so it's important to figure out these changes in responsibilities," Harvey says. "Overall, the idea in preparation is to reduce anxiety, delineate roles and responsibilities, and promote a safe and efficient place to recover after surgery."

Ian Warshak

Ian Warshak doffs his prosthesis during a peer support visit. Photograph courtesy of Mona Patel.

Healthy dialogue and communication is essential for patients and loved ones, Patel says. "Everyone will have their own unique concerns that must be heard and addressed." She notes, for instance, a child might be afraid that peers will laugh at him because his mother is missing a leg. The child may act up or not want the parent involved in school activities. A husband may be anxious about taking on childcare responsibilities that his wife was handling. A wife may be afraid that her husband won't be able to work and support the family. "Family counseling might be required as another tool toward adjustment."

"This time after surgery may add stress and challenge a relationship that is not doing well," Harvey says. "People most successful in making the adjustment and reintegration into the family and community are ones who have supportive family relationships, so it makes sense for those in tenuous relationships to seek family counseling, ideally before surgery."

Peer Support: A Pillar of Help

Patel is enthusiastic about peer support. "I underwent 20 surgeries before my elective below-knee amputation. As I was at my crossroads, I received peer support from another amputee. She helped put so much comfort into my heart with the questions and concerns I had most, which for me was around pregnancy and caring for children as an amputee. I did not want to elect to do something that would make it difficult for me to remain independent or hinder my abilities to be take care of future children." Editor's note: To find a local support group, visit Amplitude Media (www.amplitude-media.com/Resources/SupportGroups), Amputee Coalition (www.amputee-coalition.org), or Hanger Clinic's AMPOWER (www.hangerclinic.com/
newpatient/ampower/Pages/Amputee-Empowerment-Partners.aspx
).

The sooner the patient receives support and education about what to expect, the better the outcomes will be, Patel says. "When I am able to provide preamputation counseling to people, their emotional and physical recoveries are so much healthier than those that received no support prior to amputation. They feel supported, validated, and know they have a person as part of their treatment team that they can lean on for ongoing education, guidance, and support." With a group that is diverse in age, levels of amputations, causes of amputations, and stages in the physical and emotional recovery process, Patel says the support group she leads provides "a safe place where people can come and share and feel understood and validated-priceless."

Patrick Hayes and wife Maria

Patrick Hayes is supported by his wife, Maria, as he uses a rowing machine, demonstrating the importance of family involvement. Photograph courtesy of Mona Patel.

Among other peer support activities, Vollmer leads a parent and child support network. The children know they aren't alone, and parents can network and share experiences and tips. "They connect with one another and that's what it's really about. You're not alone; you have someone to talk to who understands what you're going through."

Caring for the Caregiver

Various peer support groups and organizations offer camps and other activities that caregivers and other family members can participate in as well-a benefit for caregivers and siblings of the disabled child, who can feel left out and that their needs are overlooked.

"There is a lot of extra work required by the caregiver and it's tough, especially when health complications arise and a seemingly temporary situation becomes extended," Harvey notes. "Caregivers should try to be patient, keep a positive attitude, and not neglect their own needs, otherwise, they may start feeling resentment or develop compassion fatigue." The person receiving care should express gratitude, not be afraid to ask for help, and try to stay positive. "Humor, it seems, is common ground in a relationship, and is a good distraction from reality now and then," Harvey adds.

How Prosthetists Can Help

Patients may be reluctant to see their prosthetists when things aren't going well because they feel they are being bothersome or revealing a failure, Harvey says. "As prosthetists, we should make our patients feel comfortable and welcome these follow-up and adjustment appointments. As we know, it's very common to have small problems become big problems and for these problems to become limitations in mobility and function. Addressing problems before they affect the quality of life of our patients is our biggest challenge and biggest opportunity to create relationships that build our reputations."

He continues, "We can empower our patients by offering them choices, getting them more involved in their own decision making, and getting them excited and talking and asking questions. For example, have them pick out fabric or a t-shirt design or send a family photo that could be printed onto cloth for their [socket] lamination. That could be a fun way of getting the family members excited about the process as well." Encouraging patients to send photos of new activities they are doing as they progress is another idea he offers.

Providing a list of local resources, such as peer support groups, adaptive sports events and organizations, vocational counseling resources, family counseling, and names of healthcare providers, is another helpful tool interviewees mentioned.

When a Patient Needs More Help

graphic of LL amputee

It is vital for prosthetists to recognize when patients need help outside the O&P scope of practice and refer them to that help. "Some telltale signs that prosthetists could look for are missed appointments, fatigue, low energy, memory impairments, difficulty comprehending a task or question, [or] poor hygiene," Patel says. "These symptoms could point to other underlying mental health concerns. If the patient voices suicidal thoughts, immediate action must be taken to assess mental status and take precautionary measures to keep them safe." However, people will experience normal feelings of sadness, anger, denial, and fear in their own unique ways and timeframes, while some adjust to their amputations with no psychological concerns, she adds.

Knowing a good psychologist and knowing when to refer patients is important, Harvey says. A patient mentioning thoughts of suicide would be an obvious time. "A person struggling with body image problems, anxiety, depression, or any other mental illness would also benefit. Peer support is also important and a good prosthetist can recognize when to suggest a person see a psychologist versus when to recommend peer support."

Coming Out on the Other Side

"You find your new normal, and that becomes what your life is," Vollmer says. "Over time, things get better and easier, become second nature; you don't think about it all the time. And that's the way you want it to be."

People with amputations should never lose sight of their goals, but rather realize that a new direction is needed to reach those goals, Patel says. "All of us will encounter some sort of adversity or challenge. What matters most is how we handle that challenge."

Individuals with amputations can overcome the woe-is-me mindset by focusing on the positives and what they still have, setting goals, and celebrating the strength that has enabled them to survive limb loss, Patel says. "I don't want to say that people who already had a positive outlook or a winning attitude are the only ones who will fare better," Patel says. Before her accident, Patel says she was very timid and insecure, and her parents worried about how she would handle her disability. "My experience strengthened me and provided me a launching board to help others. I always feel that people don't know what they are capable of handling until they are tested."

Miki Fairley is a freelance writer based in southwest Colorado. She can be contacted via e-mail at .