Every care decision you make must be grounded in a clear understanding of what Quality of Life (QoL) means for your parent. Decisions become difficult when QoL is unclear.
Knowing your parent's QoL priorities empowers you to be an effective advocate for them, regardless of who you are advocating with -- be it their assisted living care team, their doctors, dentist, attorney, your siblings, etc.
When you know what matters most to them, it means you also know the top criteria for every decision you need to make.
It can reduce family conflict because instead of having a battle of opinions, you can all focus on what is right for them.
It can reduce unnecessary medical procedures as you deepen your understanding of their attitude on dealing with chronic illness.
Most importantly, it will inform what to include in their care planning scenarios (and what to exclude).
What are your parent’s top 5 QoL non-negotiables?
Instead of talking about QoL in general, focus on what we call the top 5 QoL non-negotiables. These are the simple things they need to have a life worth living. It is your job as their primary caregiver to ensure you keep those things at the forefront throughout their journey.
For example, my mother’s top 5 non-negotiables:
1. Having her own private space
2. Taking daily walks outdoors
3. Starting the day with the morning newspaper, ending it with ice cream before bed
4. Spending time with family
5. Not being a burden on her children (or others)
Talk to your parent, observe them, talk to other family members and friends. When do they seem most energetic and engaged (and who makes them feel that way)? When are they most agitated? What are they afraid of? Note your observations in a journal. Talk through the list with your parent to validate your understanding.
The conversation will also reassure them that you understand what’s most important to them and that you are looking out for them.
QoL for you, the caregiver, is also important.
What are your top 5 QoL non-negotiables? What level of care are you willing and able to provide? What support do you need? Where do you draw the line to prevent losing yourself as you care for them? List your top 5 QoL non-negotiables since these will factor into your care scenarios as well.
QoL is a big topic, but using the top 5 QoL non-negotiables helps you, your parent, and your family focus on what matters most.
When things get tough and there’s no “right” decision, use QoL as your guide.