Dealing with Feelings
The emotions of living with PAD
Peripheral artery disease (PAD) is a chronic condition that is often painful and affects a person’s mobility. In Part 1 of our three-part series on PAD, we discussed its early stages, when there may not be obvious symptoms such as the pain of intermittent claudication — leg pain upon exertion that stops with rest. In Part 2 we investigated the more advanced stages, critical limb ischemia and acute limb ischemia, and the interventions associated with them — angioplasty, stents, bypasses and, in rare cases, amputation. In both parts we followed the story of PAD survivor Frank Diaz who, with the support of his wife, Maria, experienced multiple procedures and ultimately a partial amputation of his leg. Now in Part 3, we look at the emotions that may come with living with an incurable disease that can cause pain and affect mobility.
Dr. Barry Jacobs
“People react to this chronic, disabling condition exactly as you’d expect,” said Barry J. Jacobs, Psy.D., a clinical psychologist and author of The Emotional Survival Guide for Caregivers. “They are frustrated because their quality of life is compromised. They can wind up feeling hopeless and helpless and very angry because they have the will to do things, but their legs just won’t do what they want them to do. Or the legs just don’t feel the way they want them to feel. In a way they feel trapped because the more they exercise, the more they hurt. When they rest, they feel better. But then they become sedentary, and they know that isn’t good for them. People with this condition may have a sense of despair. They may have depression, too.”
Guilt is another feeling that people with PAD may feel: about what they did — such as smoking; or didn’t do — such as eating healthy and exercising. They may feel guilty about the perceived burden they have become to their family. “People blame themselves and beat themselves up, and that makes it more likely they become depressed,” Jacobs said.
Impact of PAD
It’s unlikely that these unhappy emotions will leave the person with PAD unaffected. “When people feel guilty about being a burden, they have a tendency to withdraw,” Jacobs said. “When they don’t feel well or feel incapable of doing what they used to do, they hang back. They confine themselves to home or to bed and don’t go out.”
Not only does withdrawal affect a patient’s engagement with life, it impacts their relationships. As people withdraw, their relationships become weaker. “Sometimes, friends and family get kind of tired of having to walk slowly or not walk at all, but what I see more commonly is the person with PAD or another chronic pain condition limits themselves. They pull back because they’re afraid of being a burden, and they don’t want that to happen.”
PAD often hits later in life and may limit how active a grandparent can be with grandchildren — How can I possibly keep up with them? Not to worry says Jacobs: “I actually think kids adapt better to these things than adults do,” he said. “They can love someone just as much if they’re in a wheelchair or if they’re in a chair as when they’re running around with them. Kids don’t require people to get down on their hands and knees and play. Kids just want the adult to be present.”
Frank and Maria Diaz are very engaged with their families and especially their grandchildren. “My family has been a great support network,” he said. “I couldn’t have made it without them. This is not something you should try alone.” And he can attest that grandkids want attention: “We have two beautiful granddaughters who Maria and I take care of a lot,” he said.
The impact on kids may not be great, but PAD can be hard on marriages and undermine marital satisfaction. It’s hard to feel good about receiving care all the time. “And for the spouse caregiver, as patient as they can be, this can become very trying for them. Then they start tuning out, not that they leave the marriage necessarily, but they look to other family members and friends to provide the social nurturance that they’re no longer getting in their marriage.”
It is not uncommon for the care receiver to have a feeling of being in debt to the caregiver, a feeling Jacobs identifies as debilitating. A strategy that helps is to find other ways of caring for each other. He uses the example of a husband who was the handyman at home and feels less a man when he can no longer fulfill that role. “I think what’s necessary in a situation like that is for the couple to find a way that the patient can give to the caregiver,” Jacobs said. “Instead of cleaning the gutters, they find a way to be companionable, they sit and talk, play a game, go to a movie or do different sorts of activities. People have to re-negotiate this a lot. The hazard here is that the person who is in pain and can’t do what he did before doesn’t try to give in other ways: If he can’t give the way he used to give, then he just feels useless and he just withdraws. Then actually, that action of withdrawing makes him more of a burden than ever.”
Frank and Maria Diaz
Frank and Maria were newlyweds when his PAD was diagnosed. “Before his leg was amputated, Frank and I sat down and talked about it and the changes that were coming and how those would affect our lives,” Maria said. “The first six months after the amputation were the toughest, because he didn’t have the prosthetic and I had to do all the driving and many other things that he was able to do before the amputation.”
Frank adapted well to his prosthetic, Maria didn’t have to drive or do other chores for long. “I consider these chores part of my occupational therapy,” Frank said.
Retirement plans can also be a victim of PAD, especially since today’s retirement usually includes being active. “People have all kinds of ideas — traveling, visiting family, doing volunteer work. When those activities are no longer possible because of chronic pain, people often feel very stymied and angry, and then they lose their sense of identity. They no longer have their work identity, and whatever dream they had developed for their retirement is impossible, and they simply don’t know what to do with themselves. That can really undermine one’s quality of life in that last quarter or third of life.”
Because PAD can be a progressive disease, we asked Jacobs to share ideas for coping with the emotional changes that may occur during different stages of PAD.
Pain in the Legs (Claudication)
Jacobs advises to approach this with a multipronged pain management plan and not just rely on pain medicines. “What’s important is that they are also looking at other things,” Jacobs said. “That means that they exercise to tolerance; that they do as much activity as they can bear without overdoing it but without underdoing it; that they do stress management techniques like meditation or relaxation exercises to decrease their stress; that they engage in things that are important to them. Take up a hobby that they can do sitting down. When people are enjoying something or engaged with other people, then they’re not focusing on their pain so much. Because when people do focus on their pain, their perception of that pain intensity is only greater. People with pain may need to use medications, but they should also be physically active and use the mental tools we have to help people live as well as they can.”
For many years, Frank Diaz has had his own band, Frankie’s People, that plays Puerto Rican music in the Chicago area. “I’m busy trying to find clients and get gigs and perform all over,” he said. “It keeps me very motivated and gives me a reason to get up in the morning, as they say.”
As PAD progresses mobility can become a problem, and Jacobs suggests a basic approach: “Rather than focusing on what they’ve lost and forever regretting the decisions they’ve made and forever grieving the loss of who they were — some of that is going to go on and can’t be helped — but there has to be an intentional effort for people to begin consciously thinking about who are they going to be now. If they’re going to be someone who is still contributing to others, who is still caring for others, then they may have to find different mechanisms for that than they had before. So, if they’re not going to be umpire at the baseball game, not going to be walking the dog, then what other ways can they still be a valuable family member? People have to think about this, and then they have to throw themselves into the effort to do what they can. No one can do more than they can do, but I think it’s our responsibility to do what we can with what we have. Just because someone is in pain or can’t walk or lost a limb doesn’t mean that they are no longer of value. The emphasis here is to grieve your losses, learn to manage the pain, and then seek ways of contributing to others because that will make you feel that you have a vital role, and that is the best medicine for any disability.”
Regarding amputees, Jacobs has had relevant experience: “Years ago, I ran amputee support groups, mostly for people who had bad neuropathy from diabetes. In our groups, we found that people would take care of each other and counsel each other. The experience of caring for others distracted the participants from their own pain and gave them a sense of purpose. Those changes decreased their perceptions of pain, and that made a huge difference in terms of whether they sat around feeling sorry for themselves or felt they had a sense of purpose that would continue to keep them moving forward in their lives.”
Frank started a support group at the clinic where he got his prosthetic about 18 months after surgery. They have met once so far. In addition, to face-to-face interaction, Frank is also active on Facebook and feels he is able to get and give support there.
For people living with PAD at whatever level, Jacobs has unequivocal advice, change your lifestyle! Quit smoking, eat better, collaborate with your doctor on a regular exercise routine. “And maintain a sense of purpose in your life even if you have to adopt different activities to achieve that purpose,” he said. “Too much regret, too much grief, or too much feeling sorry for yourself is not going to help you live as well as you can. And people who don’t live as well as they can, who withdraw, who feel angry, depressed, guilty or even ashamed that they have something like this, unfortunately those people are more of a burden to other people than they would be otherwise.”
Obviously, family caregivers, whether grown children or spouses, play a critical role, one in which their understanding and patience will be called upon. “Caregivers need to understand that the person’s pain is real and very significant, and that there’s no point in blaming someone who smoked, for instance. That doesn’t help them deal with their current situation. They need to understand that change is hard. As much as they want to quit smoking or remain as active as possible, people with PAD are struggling. The caregiver has a role of encouraging them and coaching them without being harsh, but very patient and help the person with PAD find ways to be helpful around the house and still contribute to the family.”
Maria Diaz has thought a lot about caregiving, especially after reading the experience of other patients and their caregivers on Facebook. “Some of those posts sound dreadful because they are so stuck,” she said. “There were some tough things at the beginning, but we had to ask ourselves ‘Are you going to stay stuck here or will you move forward?’ It was hard to be tough on Frank, but the therapists and doctors warned me not to baby him.”
“Even though I knew it was serious, I never felt hopeless,” Frank said. “To be honest, my approach to the post-op period was relax and go along with treatment, and the healing process will take care of itself. It wasn’t anything dark or dramatic. I dealt with the challenge with patience and faith in a positive outcome, the same way I deal with most everything else.”
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