Many of us feel honored to provide care for our aging parents or ill spouses, but this honor can also present serious challenges.
Even when we have had conversations with our loved ones about their wishes under certain circumstances, life is rarely so neat that we are presented with clear choices of which there is a straightforward “winner.” For this reason, caregivers often need to make tough decisions under sometimes murky conditions.
The responsibility weighs heavily on us, but my personal feeling is that respect for the dignity and legacy of the person we provide care for can be a comforting guide as we travel this trying road. Yes, we may get frustrated or even angry over having to deal with another mess or dilemma. We are human and won’t always handle these situations well.
Having a solid foundation of respect for your care recipient will help you approach these uncomfortable duties in a kinder manner. It will enable you to think more clearly, even when you risk your loved one’s anger as you strive to ensure their safety and best interests. This is one way to make caregiving a little easier.
Respect Yourself As a Person and a Caregiver
To make the best decisions, whether for yourself or for someone else, it is vital to have self-respect. When you’re faced with a difficult choice that affects your loved one, there is added pressure. You want to know that you’re doing your best to weigh all available options and providing quality care that is in line with their desires, even if they can’t vocalize them.
Don’t even begin to think about striving for perfection. Aiming for this unattainable goal is a recipe for caregiver burnout. Instead, stick to asking yourself one simple question: Are you doing the best you can under the circumstances? If the answer is yes, then fret no more. That’s all you can require of yourself.
Don’t second-guess past decisions, either. If you feel you’ve made mistakes, learn from them and then move forward without allowing them to affect your self-worth. If you’ve developed a healthy sense of respect for yourself, it’s likely that you will suffer less caregiver guilt. Self-respect is also crucial for setting and maintaining your own boundaries. Caregiving constantly presents difficult situations where your well-being seems to be at odds with that of your loved one. Understanding and respecting your own limitations is mandatory, not optional.
When you must face difficult decisions and realizations, you’ll still feel some pain. For example, placing a loved one in a skilled nursing facility is an upsetting transition for most people, especially those who promised their loved ones that they would never resort to this option. However, if you hold yourself to realistic standards, you’ll know that you are doing the right thing for the right reasons. Therefore, there is no reason to feel guilty. By providing the best care you can under the current circumstances, you have honored the spirit of your larger promise to do your best for your care recipient.
No one knows what the future may hold. Yet, caregivers are faced with the present and must often make decisions that seem counter to the beliefs and preferences of their loved ones. Self-respect should help you cope with these new and changed realities as they arise.
Making Difficult Decisions for Someone You Do Not Respect
Of course, there are some people in our lives who have done little to earn our respect. This may be an abusive parent, an uncaring spouse or some other family member or friend who has always been difficult to interact with. Unfortunately, many of these people still require care as they age.
If you are tasked with making decisions on behalf of a demanding person like this, the truth is that finding even an ounce of respect for them is a crucial part of your caregiving and decision-making. Even if you must dig into their past to find some minor thing about them that you can admire, it will help you feel much more comfortable making difficult decisions for them.
Perhaps this person did the best they could despite enduring their own difficult childhood or marriage. Maybe there is one act of kindness or bravery that they performed in their youth that you can appreciate. Applying this concept doesn’t mean that you forget the hurts you have suffered, but it may help you move on with your own life and focus on the present and the future rather than dwelling in the past.
Of course, there are families where emotional and/or physical abuse was so harmful that it’s simply not possible for the adult children to provide hands-on care for their aging parents. That’s okay. There are other ways of securing proper care for individuals who are so toxic that they can’t be interacted with personally. Even going no-contact is sometimes necessary. I’ve addressed some of these issues and solutions in this article: Caring for Parents Who Didn’t Care for You.
Respecting Other Relationships
I’m a charter member of what has been dubbed the “sandwich generation.” While caring for multiple elders over the years, I was also raising two children. Balancing relationships with friends and family as a caregiver is never easy, but for those caught in the sandwich generation, it is a constant source of worry.
One of my first agonizing dilemmas as a caregiver trying to balance my relationships came as my beloved aunt was reaching the end of her battle with cancer. I’d spent significant time with her in the hospital, and my parents stayed with her around the clock. My oldest son, who was then in sixth grade, had his first ever band concert during this difficult time. I had to choose whether to continue keeping vigil by my aunt’s bedside or support my son at this important event.
I decided to go to the concert and my aunt died during my son’s solo performance. To this day, I don’t regret my choice. I felt her spirit with us as she left her comatose body behind. I believe my aunt, who was an opera singer, would have applauded my choice to support the next generation’s musical prowess.
This is only one example of the many difficult choices I had to make between my elders and my children. Being a member of the sandwich generation can feel defeating at times. There are so many relationships, wants and needs to balance. I got through by respecting my elders’ legacies, but I also made a point of respecting my children’s time-sensitive needs to be nurtured and supported. (Keep in mind that we only get to see our children grow up once.) I’m not confident that I always made the right decision. In fact, I can think of a few times when I know I did not. However, I did the best I could at the time. I must respect myself for that much and move on.
Making End-of-Life Care Decisions
Of course, the most serious and nerve-racking decisions in caregiving concern life and death.
Should a certain procedure be done to keep someone we love alive when there’s little hope that the person will enjoy a high quality of life? When is the right time for hospice care? Should pneumonia that will likely take an elder’s life be cured, only to leave them struggling with pain and/or advancing dementia until the next bout of illness?
Even if an elder has provided us with legal documents that give us instructions, like an advance directive, a POLST form or a do not resuscitate order (DNR), these are decisions that we hope we never have to face. Yet, many of us find medical professionals and other family members looking to us for answers at critical moments.
The bottom line is that caregiving isn’t for the faint of heart. We must admit our humanity and our perceived imperfections and do the best that we can. Respect for all our loved ones and respect for ourselves will provide us with a solid foundation for shouldering tough decisions and living with the consequences without guilt.