Most of us have an idea of what we like to do.
We like to have BBQ’s in the backyard by the pool, with the twinkle lights on at dusk; the laughter of good friends or family around us.
Maybe we enjoy making a fire and curling up with a good book and a cup of hot cocoa on a cold, rainy day. Sitting in our favorite easy chair, waiting for our grandchild to climb up beside us, to watch an episode of her favorite TV show.
What if all that could no longer be done?
What if you were in so much pain at that BBQ that you couldn’t focus on the twinkle lights or participate in the laughter, much less manage the grill? What if you were unable to sit in the chair with your granddaughter and watch TV, because you couldn’t lift your hand to hold that book or cup of cocoa, much less turn on the tv? And you definitely couldn’t help your little one into the chair beside you.
When we are asked to define “Quality Of Life”, this is the important stuff we’re talking about.
A New Normal
There will come a time when you’ll talk to a doctor and they’ll tell you “This is it. This the new normal.” This is your new quality of life. This could be due to a disease or an accident, due to a decrease in mental ability because of dementia, or simply due to the regular aging process.
The question is, is this acceptable to you or your loved one? And, if not, how does this change ideas around living arrangements and the help that is needed?
Secondly, how does this change what medical interventions would be wanted to prolong life — including CPR and life support machines?
It’s important to have these conversations before something happens. If a crisis situation was to come up and you can’t speak for yourself, your family is left to navigate what they think your values are. They have to make decisions that could impact both your quality of life now, and their grief for years to come. So whether you’re a caregiver or a care recipient, it’s important to have a plan.
Making a plan
Quality of life is subjective and is not exactly the same for any two people. Jim (name changed for privacy) had Lou Gerrigs disease (ALS). This is a terrible neurological disease that slowly paralyzes your muscles while leaving your mind intact. This man stated, “When I can no longer feed myself, my quality of life is gone”.
He had a very clear idea of what his quality of life meant, and it centered around his independence. He refused a feeding tube as well as any other medical interventions that might prolong his life. He stated he wanted to die with dignity and comfort, in his home.
Jim discussed his quality of life with his medical power of attorney, who was also his durable power of attorney, and together they made a plan to honor his wishes. This included 24-hour in-home care, interviewing hospice agencies (so they knew who they would use when he was eligible for hospice care), funeral planning, and assistance with “saying goodbye” to the people he loved.
Defining Quality of Life
Whether you’re defining your own quality of life or helping a loved one to define theirs, it all starts with a lot of questions, and time to think. So grab a notebook and a drink, and give yourself some time to write down anything that comes to mind.
Note: We’ve framed all these questions in the first person for simplicity, but if you are trying to help someone else, or thinking on behalf of a loved one, just switch “me/I”, for “you” or “them/they”.
- What is important to me?
- What activities bring me joy?
- What atmosphere do I want around me?
- Who do I want around me?
- As long as I can ________, then I have quality of life.
- If I could no longer do _______, then my quality of life shrinks.
There are many areas of life to think about when it comes to defining quality of life. To help think fully around the subject, ask yourself these same questions again as they apply to the following:
- Your family
- Your social life
- Your spiritual health
- Your mental health
- Your physical health
Ask for help if you need it.
These questions are doubly hard if someone is depressed and/or hasn’t come to terms with their “new normal”.
There are “helpers” out there who can assist you with this, including social workers, psychologists, licensed professional counselors, and multi-disciplinary medical teams that specialize in these conversations. There are also certain documents that can be helpful, including The 5 Wishes (www.fivewishes.org).
Quality of Life and Treatment
Outside of “normal” or “new normal” life, if you or a loved one are facing an illness or disease that requires treatment, it’s important to know how this could affect your quality of life.
The first question to ask any doctor is “Will you be honest with me about my health?” Once that has been established, here is a list of questions that will help you weigh the value of the treatment against the cost of the side effects.
- Is this treatment going to extend my life, and for how long?
- What kind of help will I need during this treatment?
- Will I still be able to do the things I enjoy during treatment?
- What is the goal of this treatment?
- How will I know this treatment is working?
- If this treatment is not working, will you talk to me about my options?
It’s also important to ask what kind of care is available if you decide not to go through with a treatment, or are not eligible for treatment.
It’s a good idea to make a written list of these questions and bring them with you to the doctor to ask on behalf of yourself or your loved one. This can help you remember to cover every point in an emotional situation.
Take the next Smart Step
All these questions can help you define your quality of life, and to make informed decisions about treatments that are in alignment with your values.
Once you know what your definition is, talk about it: With your children, with your spouse, with your Power of Attorney.
Then, make it official by putting it in a Living Will, upload a copy to your Ruby Vault, and give a copy to your family.