"He's being lazy. He was fishing a year and half ago. He should be able to get out of bed."
"He's being stubborn. He knows what he needs to do. He just doesn't want to do it."
As a supportive palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I meet with patients when every domain of their lives start to be impacted by worsening health. I listen as family members sometimes speak in frustration about the measures they take to encourage their loved one to move (Post 78: “If You Really Loved Me, You Wouldn’t Leave Me” and Other Things We Say When We’re Hurting).
"I tell him if he's fighting to be with his daughter, he has to get up and move to the bathroom on his own."
"I say to him if he wants to live longer - if he wants to STAY with us - he has to walk!"
Sometimes family members have a difficult time reconciling their active and independent loved one with the frail or gaunt person lying in the bed. They may express incredulousness over the rapid change or severe change in their loved one. "This is not him."
Depending on the severity and rate of decline in their loved one's ability to care for themselves and to eat, I may be concerned that their loved one's disease or health condition could possibly be approaching late stage or end stage and that their average prognosis transitioning from "years" to "months," or perhaps even "weeks" (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3 and Post 95: Statistics Is Not Prognosis).
Often, regardless of prognosis, family members' goals for their loved one are for their loved one to "get stronger," "not be in bed all the time," or "be able to walk again." Their loved one may nod their head in agreement and respond quietly, "Yes, I want to walk,” which family members may interpret as an agreement in goals.
This may be the time that we discuss giving another (and possibly final) attempt for the patient to become “stronger” and out of bed. "It sounds like trying to get stronger and seeing if you can walk is important to you and your family at this time. In that case, let's try our very best. The home health physical therapist may come to your home for half an hour or so two to three times per week, but you're responsible for doing your homework. You do your exercises a little at a time every day, and the goal is for you to get stronger and feel stronger."
If a patient were eligible to receive a physical therapy evaluation, the physical therapist would likely evaluate different aspects such as the physical or mental ability to follow instructions (and therefore, ability to follow physical therapy exercises), balance (such as the ability to sit on the edge of the bed without support), strength (such as core strength or leg strength), and endurance (such as the number of steps one is willing to attempt).
Otherwise, some family members may find that they prefer to research on their own and find bed or chair exercises that their loved one would be willing to endeavor.
The following are potential suggestions for encouraging a loved one – who is already notably physically weak from their underlying health condition and on the chair or in the bed for much of the day - to do exercises:
- Gently remind your loved one of their motivation (their "why") to get stronger and more mobile. Let's not have to use the bedpan you hate. We can get to the commode.
- Break down the big goal to smaller, less overwhelming, short term goals. For now, let's work on leg raises ten times each side every day.
- Achievable goals may require taking frequent breaks to achieve that goal or breaking that goal to even smaller steps. Breaks may be required because of symptoms such as increased fatigue or decreased ability to stay focused (read Post 30: How to Make the Most of Every Day Even with Fatigue – The Five P’s). Ok, how about instead five leg raises each side morning and afternoon.
- Do the exercises with your loved one at their pace. We'll do this together, and if you want to take another break, that's okay.
- Think about what your loved one used to enjoy in the background when they were more active. I remember you liked to listen to this playlist when you working in the shop. Do you want me to turn it on now while we’re working?
- Keep the exercises as stress-free and positive as possible, including possibly using humor when things do not go as expected. So...that was awkward. Let's try a different way.
- Minimize placing burden to perform, which may increase stress or anxiety about exercises. Be respectful and patient instead of unintentionally taking out frustrations on your loved one. It’s normal to have "on" days and "off" days. Let's rest as much as possible today so we can really try these exercises again tomorrow.
- Embed exercises into the daily schedule or daily routine. I wrote on here leg raises at 10am and 1p every day.
- Pair daily exercises and/or physical therapy exercises with something enjoyable. We'll do your leg exercises, and then I'll push you outside where we can sit for a bit on the patio.
- Consider replacing designated exercises with a purposeful activity that is more meaningful for your loved one. We’ll count it as your afternoon exercise if you can get to the dining table for lunch. The kids are eating with us today.
- Acknowledge attempts. That's great you helped when I sat you up. I could feel you were really trying.
- Recognize when "rehab" is occurring even if it is not called "rehab." Do you realize when your friends were visiting, you were sitting straight up in the bed for almost the entire visit?
- Celebrate even the small accomplishments. We did two more than yesterday; that’s good!
We always hope that our loved one will respond to physical therapy and/or get stronger with exercises, and we continue for as long as possible.
At some point, however, our best efforts may not be resulting in the outcomes that we are fervently hoping for. Our frail loved one may not be able to do physical exercises consistently and/or they may repeatedly have setbacks due to recurrent hospitalizations. They may have other conditions such as arthritic or sciatic discomfort or significant anxiety about falling that limits their ability to perform exercises. They may have such fatigue and such severe decline in strength, energy, alertness, or attention that they turn away from the physical therapist.
Various family members may respond differently when their loved one starts turning down the physical therapist or turning away from family members attempting to pull them up to a sitting position. These responses may include sadness, grief, frustration, guilt, or a combination of emotions.
Depending on the situation, I may remind them of the following:
1. Sometimes, the will is strong, but the body does not behave. Someone can still "fight" even if they are physically weakened (Post 46: How Being a “Fighter” Can Alter Your Path).
2. No one chooses to leave the people they love the most. It is not "laziness" when someone is not working with physical therapy or doing their exercises. It may be that their disease [whether it be cancer, dementia, congestive heart failure, chronic obstructive pulmonary disease (COPD), cirrhosis, kidney failure, or possibly a combination of multiple health conditions] has progressed to end stage and is sapping physical energy and strength. It is not their choice to become physically weaker; it is biology.
3. Family caregivers may feel guilty that they did not do enough or act fast enough or push hard enough to prevent a loved one from weakening. If a person's disease is advancing to severe or end stage despite doctors' and family's best efforts, then we attribute dying to the natural progression of the disease. It is through no fault of the family caregiver. Some family caregivers at this time choose to transition their focus to easing some of the discomforts of losing independence and losing control.
This may be the time to consider changing goals and values towards prioritizing our loved one's comfort and ease. "While your dad appreciates your encouragements to sit up, bend the arm, raise the leg, take a step...keep going with the exercises! It makes sense to stick to the goal of trying to get him stronger. However, if or when your dad were to repeatedly say your words are 'nagging' or turn his head away from you when you encourage sitting up or become irritable when asked to work with physical therapy, that may be the time to acknowledge, 'We tried, but his body is not responding to therapy or exercises. This may be the time to switch the focus to keeping him comfortable and at ease.'" [Often, at this point, the goal of pursuing comfort and ease is done so with guidance from a hospice team (read Post 93: No Two Hospices Are the Same).]
Seeing a loved one lose strength and mobility can be difficult, especially when realizing that this may be a situation that is not "fixable" or improvable. I hope this post is helpful in providing guidance and perspective as you and your family navigate living with declining health and strength.
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