Identifying & Managing Stress in Care Partners
Studies have shown that dialysis patients do better, live longer and are more likely to follow their treatment plan when they have social support.1,2 A recent review of 20 studies found that family members and friends who serve as “informal caregivers” to home dialysis patients can feel overwhelmed when they have to add dialysis-related tasks to other tasks they do daily. Some tasks care partners do relate to a patient’s health but not dialysis specifically, such as:
- Scheduling medical appointments
- Providing or arranging transportation
- Planning, shopping for healthy food, and meal preparation
- Ordering and reminding a patient to take medication as prescribed
- Managing medical supplies
- Talking with medical personnel and advocating for the patient
- Seeking emergency care when needed
- Encouraging the patient to do as much self-care as possible
The study also found that when care partners said performing tasks helped them become more resilient and aided their personal growth, these positives helped to offset the burden.3
Two years ago, I wrote a post for KidneyViews entitled Caring for Home Dialysis Care Partners, hoping that what I wrote would:
- Increase and improve communication between dialysis staff and care partners.
- Help staff see the value of encouraging patients and care partners to share dialysis tasks.
- Lead staff to help as many patients as possible to take primary responsibility for home dialysis.
- Allow patients who are willing and able to do solo dialysis.
- Encourage clinics to consider the option of offering staff-assisted dialysis.
In that post, I provided a link to MEI’s Partner Agreement on Tasks for Home Dialysis (the PATH-D for HHD or PATH-D for PD, which can help patients and care partners decide together which tasks each is willing and able to do. I believe that if home training nurses encourage patients and care partners to fill out the PATH-D for PD or HHD, it might open a discussion of what the tasks are for each type of treatment and how to share them. However, posts from care partner members of the Home Dialysis Central Facebook group make me think it is time for a renewed effort to identify causes of care partner stress and ways to reduce it.
One example of a post describing a care partner’s stress received over 100 responses. Below is what she wrote and a few of the responses from patients and other care partners.
I am the careGIVER for my husband not the care PARTNER, which is what it is supposed to be. We’ve been on HHD since May, 2016 and he just recently went to nocturnal. Even though this is better, he does absolutely nothing to help me with his care. He won’t clean the machine, load the cartridges, break down boxes, restage supplies, order supplies - NOTHING. I am about at the end of my rope.... thanks for listening. I feel like a failure and very selfish, but am really considering putting him in clinic.
One man offered a comment:
The more you do and do not push back, the more they let you do. Men are very good at letting their spouse or care partner do everything. If you do not push back or say things, he will just let you keep doing it. Of [sic] he needs to get retrained to setup his machine or take it down, his clinic can help with that.
A care partner commented about what helped a patient take greater responsibility:
We hired a friend to be my husband’s care partner so I could take a 2 week vacation. While I had to still do all the arranging, it really made him own his treatments. He now does just about everything himself and I just do the taping at the beginning and end.
A solo patient shared her opinion:
…home hemo isn’t for everybody. If he can’t handle the responsibility and feels the need to lay it all on you then he needs that responsibility taken away from him. I’ve been on home hemo for 12 years. I’m solo. I don’t have a care partner or caregiver and that’s okay because I know it’s my responsibility because it’s my chronic disease and nobody else’s.
A post in another thread was started by a home HD patient who explained why she believes it’s best for care partners to encourage patients to do all they can. She wrote:
As a person who dialyzes, it’s hard to explain how enabling hurts us. We can and will wallow if we’re allowed. All too often people forget the person we were-independent, self sufficient...they start to see us as patients and kidney patients and forget that what makes life worth living sometimes is responsibility. Both to yourself and your relationship. If as care partners we slide in and “rescue “ the warrior from responsibility then what is there left? It takes very little. IF the warrior can dress themself and use the bathroom on their own—then they are MORE than capable of setting some treatment task goals. It should not be the partner juggling everything. I’ve been on ALL three sides, I was a paramedic over 20 years, I cared for my blind, double amputee, diabetic dad, and I am currently doing home hemo. I’m not ‘downing’ anyone, what I am trying to say is “give a man a fish, he eats today. Teach the man to fish and he’ll eat for a lifetime.” Sometimes people need nudging. If they don’t TRY and that care GIVER gets sick, then what? It becomes catastrophic. They feel like a burden and lose hope.
As you can see from these posts, how much help a patient needs and how much his/her care partner is willing to do can be plotted along a continuum. Some patients are trained and approved to do dialysis solo without a care partner. Some patients are fully able to do all dialysis tasks themselves and a care partner may be present, but only provide help if it’s needed. That care partner may need to be there because a clinic requires it. Some patients may do some tasks but are unable to do others. Others may not be able to do any self-care tasks and their care partner chose to be trained and willingly does all the dialysis tasks to allow the patient to be at home instead of having to do dialysis in a clinic. Still others may be so angry or depressed about having kidney failure and needing dialysis that they refuse to do even those tasks they could do, putting their care partner at great risk of burnout. Do you know how burdened your patients and their care partners feel?
Some care partner members of the Facebook group report that dialysis staff have never asked them how they’re doing. When you ask, know the signs of stress and burnout so you can recognize them and make sure they’re addressed quickly. Unaddressed stress can affect health and relationships. Relationship problems can lead a home patient to switch to in-center dialysis. Some patient who switch feel like they failed, which can add to anxiety and depression. The AMA developed a printed Caregiver Self-Assessment Tool that allows care partners to screen themselves for stress. There’s an online version as well. Asking care partners to do this and share the results with you, can be very helpful to the care partner, the patient, and you.
Signs of stress and burnout
According to Psychology Today, “Stress generally refers to two things: the psychological perception of pressure, on the one hand, and the body's response to it, on the other, which involves multiple systems, from metabolism to muscles to memory.”4 It’s a part of life to have short-term stress, like when you’re waiting in line of traffic and need to be somewhere at a certain time or you have to finish a project by a deadline. But having a life-altering chronic illness or taking care of someone with that illness can cause ongoing stress, anxiety, depression and can lead to burnout. Psychology Today, defines burnout as “a state of emotional, mental, and often physical exhaustion brought on by prolonged or repeated stress.”5
According to WebMD:
- Emotional symptoms of stress include:
- Becoming easily agitated, frustrated, and moody
- Feeling overwhelmed, like you are losing control or need to take control
- Having difficulty relaxing and quieting your mind
- Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
- Avoiding others
- Physical symptoms of stress include:
- Low energy
- Upset stomach, diarrhea, constipation, nausea
- Aches, pains, tense muscles
- Chest pain, rapid heartbeat
- Frequent colds and infections
- Loss of sexual desire/ability
- Nervousness and shaking, ringing in the ears, cold or sweaty hands and feet
- Dry mouth and difficulty swallowing
- Clenched jaw and grinding teeth”
- Cognitive symptoms of stress include:
- Constant worrying
- Racing thoughts
- Forgetfulness and disorganization
- Inability to focus
- Poor judgment
- Being pessimistic or seeing only the negative side
- Behavioral symptoms of stress include:
- Changes in appetite – not eating or eating too much
- Procrastinating and avoiding responsibilities
- Increased use of alcohol, drugs, or cigarettes
- Exhibiting more nervous behaviors, such as nail biting, fidgeting, and pacing.” 6
- Reframe by looking at a situation in a different way
- Practice relaxation techniques like mindfulness, yoga, meditation, tai-chi
- Eat healthy
- Exercise regularly
- Set limits and stick to them
- Make time for friends, family, social activities and hobbies
- Practice good sleep habits
- Accept that none of us can control everything
- Avoid alcohol or drugs
- Reach out to the dialysis social worker or outside counselor
- Kimmel PL, Peterson RA, Weihs KL et al. Psychosocial factors, behavioral compliance and survival in urban hemodialysis patients. Kidney International 54(1), 245–254, 1998. https://www.kidney-international.org/article/S0085-2538(15)30637-2/pdf↩
- Ibrahim N, Sharlene S.L.T., Din N.C. et al. The role of personality and social support in health-related quality of life in chronic kidney disease patients. Public Library of Science 10(7), 1–11, 2015.↩
- Hoang VL, Green T, Bonner A. Informal caregivers' experiences of caring forpeople receiving dialysis: A mixed-methods systematic review. J Ren Care. 2018 Jun;44(2):82-95. https://www.ncbi.nlm.nih.gov/pubmed/29357407↩
- Psychology Today. Stress. https://www.psychologytoday.com/us/basics/stress↩
- Psychology Today. Burnout. https://www.psychologytoday.com/us/basics/burnout↩
- WebMD. Stress symptoms. https://www.webmd.com/balance/stress-management/stress-symptoms-effects_of-stress-on-the-body↩
- American Psychological Association. Effects of Stress on the Body. https://www.apa.org/helpcenter/stress/↩
Unmanaged stress causes discomfort and can be dangerous. It can affect multiple organs in the body, raise blood pressure, and increase the risk of stroke and heart attack.7
Dialysis staff can help encourage a patient, care partner, and the rest of a family to agree on what household chores each person can do. In addition to using the PATH-D, other ways dialysis staff can help care partners manage stress include encouraging them to:
Life can be stressful. Most of us can handle short-term stress. However, chronic stress that occurs with a chronic illness can cause emotional, physical, cognitive, and behavioral symptoms and affect relationships. To help our home dialysis patients have a happy and healthy life, we need to understand and acknowledge that caring for a loved one who is on dialysis is stressful. Home training should never turn a capable patient into a passive receiver of care or turn a care partner into a care giver. Avoiding this is one way we can limit stress before it happens. We owe it to care partners and patients to help them learn ways to better manage stress.