A sense of purpose. Sometimes this may be our primary source of strength, endurance, and resiliency at a time when health issues and medical diagnoses start to affect all areas of our lives.
"I have to get up early every morning to open up the day spa we own."
"This is my home of over 35 years. I've cleaned it and taken care of it my way for over 35 years. I don't want anyone else to clean the house. I'll do it."
"I'm a Mexican folklore dancer and performer. That is who I am."
However, due to any number of health reasons that affect our ability to get around on our own, we may no longer be able to act on what is most meaningful to us. As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I have listened as numerous patients expressed frustration, dismay, anger, grief, and/or wistfulness over this particular type of loss. They may even express grief or anxiety of an anticipated loss [read Post 35: Grieving Loss (and Change) That is About to Come – Six Coping Suggestions].
"Since my diagnosis, my daughter won't let me do anything in the house. I feel useless sitting here on the couch."
"I've always coached softball. I'm not just the girls' coach; the girls are like family to me. Some don't even have enough to eat at home, and I invite them over for dinner. I don't know what I would do if I couldn't coach anymore."
Often, our identities are entwined with the work we do, the roles we play, and goals we have achieved, and losing our sense of identity could also result in losing our sense of purpose (read Post 86: How Has Your Physical Health Affected Your Spiritual Health?).
"What do I do if I can't work?"
"I am a dancer. I am a performer. What am I if I'm not that?"
As a physician, I realize sometimes the best I may be able to do is solely to actively listen and acknowledge a fellow human being's distress (and at certain stages of a loved one's medical illness or health decline, being present may be the most valuable thing one can do for a loved one).
Then other times, I sense that a person may be ready to have a back and forth discussion on how one could move forward in a new reality.
The following are suggestions I might make depending on one's readiness to hear:
Suggestions for mindset change
Anyone who suffers great loss, including loss of purpose or loss of identity, should be allowed opportunities to mourn their loss. It is a time to process, perhaps accept, and then attempt to let go a vision of our present and future selves.
Sometimes, however, the mourning may evolve into dwelling on the loss for a prolonged period of time or allowing the focus on loss to become all encompassing. There may be no room in one's mind to consider alternate ways of finding meaning and purpose.
To take the first step towards a mindset change, I suggest trying one's very best to reflect every day on at least one thing for which they have gratitude.
"My daughter moved down from Ohio to help manage our day spa. I get to see my grandchildren every weekend."
"I have wonderful children with wonderful spouses who are able to take turns staying with me so I can remain in my home."
"I enjoy watching the latest documentaries on Netflix."
I have seen again and again that the patients who express gratitude - even despite big loss - seem to more easily open their minds to possibilities.
Suggestions for finding new purpose
One may find purpose from unexpected places, so this may require both outside the box thinking and a willingness to explore. This creative thinking may be especially true if one's body is physically changing for example with decreased strength or stamina, loss of ability to get around on their own, or diminished vision or hearing. This would also hold true if one's mind were changing resulting in for example forgetting to pay bills for multiple months, confusing tax forms and inaccurately completing them, or getting lost on their way home from church.
"My daughter takes me to our business three days per week, and I talk with the customers. I don't run the business anymore, but you could say I'm the 'face' of the business. I'm a ' people' person, and I'm good at promoting the business."
"I have my 'throne' in the kitchen, and I direct the kids on how to cook. My specialty is posole. I'm trying to teach the kids their heritage."
"You know I was never a puzzle person, but since I can't get around much, I decided to start a 500 piece jigsaw puzzle. And you know what? It's been therapeutic, and I've done three. My goal is to get this done by the end of the month so my wife can frame it and give it to her sister as a Christmas present."
"My mother may have dementia, but she can still write. She has the most beautiful handwriting. She has trouble figuring out what to write, so we give her scriptures to copy into her notebook, and she LOVES showing it off."
Of course, sometimes what a family member or caregiver think SHOULD interest a loved one may not actually be what sparks an interest. This may be a time for well intentioned family members to let go of preconceived notions.
"I keep getting coloring books, like I'm a child. What do I need to color for? I used to own my own accounting firm. Just because I've had a stroke and can't get up like I used to, people around me keep telling me to 'rest' and then they hand me yet another coloring book."
"My son in law said a puppy really helped his mother. The puppy gave her a renewed sense of purpose, to be able to care for another living being dependent on her. The puppy made her feel needed. Well, I thought about it because he keeps bringing it up. And I just feel dread, thinking about cleaning up the poop, the pee, and the vomit. I can barely clean my own poop, pee, and vomit!"
For some people, outlining and working on a legacy project can given them a renewed sense of purpose (read Post 12: Legacy Work and the Five Senses). Legacy work can be done at any stage in one's life, whenever and where ever one feels a desire to create something tangible that can be passed on to either loved ones or to the world.
Suggestions for seeking help
If you were to find yourself wanting to change your outlook and struggling to articulate anything positive day to day and/or are feeling overwhelmed or possibly even hopeless of finding purpose and renewed sense of meaning as you try to make the most of living with serious or complex illness, it is okay to seek help. In fact, most healthcare providers would probably say what you are feeling is human and normal, and they would likely encourage your seeking help.
Help may be talking to any friend, family, or colleague whom you know will actively listen without jumping too quickly to give advice. Help may be asking your doctor to speak with a counselor or therapist. Help may be reaching out to your social worker to ask for community and online support groups; this may be the social worker at your dialysis center, cancer center, rehab center, nursing home, assisted living facility, or other facility OR the social worker via a referral from your primary care doctor, specialist, or palliative care specialist.
If you are the family member, best friend, neighbor, or closely involved caregiver who sees your loved one struggling to cope with loss of purpose, you may have to recruit the aid of others (read Post 68: 7 Suggestions for Supporting a Demoralized Loved One). This may be especially true if you wonder if your loved one is also experiencing depression, anxiety, or spiritual distress. Concerns about depression and anxiety should be evaluated by a healthcare provider in case medical treatment could help, and spiritual distress often requires the help of a spiritual advisor such as a chaplain.
Remember, there are multiple ways each of us can find purpose and meaning. This may be hard to remember when our health place limitations on our physical, or even mental, abilities, but there are truly multiple ways we can find purpose, whether it be as outreaching as starting an online fundraising campaign for research of a particular disease or as personal as setting a goal to listen to two classics on Audible each week.