The Emotional Toll of Caregiving is Killing Our Family

Our love for our parents makes it difficult to make decisions as caregivers.

Do you know what it’s like to care for an aging parent who has multiple physical and/or emotional problems? If not, you may be in for a rude awakening.

No matter how much you love your parents, caregiving is a difficult experience for everyone involved. My mother suffered with Alzheimer’s for years and my two sisters, two brothers, and I juggled the responsibilities of helping take care of her — emotionally, mentally and physically. My father was unable to provide a lot of the care because of his own declining health, but he did as much as possible. Our family pulled together to do what we needed to do for as long as we could. We adapted their home for handicapped access to ensure a safe environment, but that was just one small step involved in caregiving.

Eventually my mother’s caregiving needs became not only challenging, but almost impossible. It took 24/7 care, medical assistance, medical management, emotional support, and lots of money to keep it all going. Finally, we made the most difficult decision of our lives – to place her in a nursing home where she could receive optimal medical support, while providing our own emotional support and love as much as possible. Never a day passed that two or more of us did not visit her, eat meals with her, roll her wheelchair around the hallways for hours, and we even spent the night with her. Although it was the responsibility of the nursing home staff to care for her medical needs, it was our responsibility to continue loving her in the way that only a family can do for another person. And we did it until she passed away 3 years ago. She spent less than 5 months in the nursing home thanks to our ability to care for her at home for so long.

This sounds like a rationale, reasonable and practical solution to the situation doesn’t it?

While most people would think so, there are others who do not. The decisions we made tore our family apart in many ways – physically and emotionally. As decisions were made, one sibling agreed, one sibling vehemently disagreed, one was not sure — and so on. Emotions were charged and ever-changing as we all grappled with the loss of our mother in many ways. We felt we lost her multiple times as her mind slipped away and she eventually stopped calling us by name. Our own personal hurt got in the way of our sensible decision-making at times and we ended up challenging the motives and decisions of each other. The decision to move her to the nursing home for her last months was heart-wrenching and it tore us all apart.

The result? A family torn with disappointment, anger, and finally deeply mourning over the ultimate loss of our mother — and questioning our own caregiving decisions.

The pain still emerges from time to time. It never really heals after going through such an experience. We have tried to mend relationships and regain the closeness we had as siblings, but our own emotional hurt still plagues us.

Now, we have embarked on another journey with our father who requires almost constant caregiving. Three of my siblings live very close to him, while two of us live further away. We all have our thoughts and ideas on what needs to be done, but our emotions get the best of us at times. Each and every one of us has my father’s best interests at heart when we make decisions or suggestions because we love him so much, but due to the volatile and emotionally charged nature of the situation, it is difficult to always be objective. With 5 siblings, there are bound to be differing opinions on what is best for him.

We have already learned that the hard way.

At 85 years old, my father deserves the best care possible – no matter what that means for each of us. We must learn to put our own personal needs aside, and think about his needs. What feeds our own emotions and needs may not be what is best for him and that makes it extremely difficult to make rationale decisions at times. Unfortunately, humans often make decisions that are best for them and not the person directly affected with an issue. After seeing the pain we all suffered as we made difficult decisions for my mother, we face a similar situation with my father and the emotional anxiety and dread escalate with every new event.

There is one thing for sure when it comes to caregiving for a parent. There is no single way to handle the situation — and with 5 siblings, there are likely to be 6 different opinions at any given time.

If you find yourself in a caregiver situation, or if you require the services of a caregiver, take time to consider what you want out of it. Don’t wait until you need help and force someone else to make these decisions for you. I have already made my wishes clear to my two precious daughters so they won’t have to make decisions on my behalf that tear them apart when I need help.

As I face today and the challenges ahead, I realize that we can only do what we believe is right. As for my siblings, I know that their hearts are all focused on what is best for my father, and I must remember that fact as we navigate yet another difficult time as caregivers. Our opinions and ideas may not always be the same, but our love for our parents has never wavered.

And as for me, I must find peace in knowing that what ultimately happens to my father is not in my hands but in the hands of God. I can only do what I think is best to make his life more comfortable, safe and enjoyable for as long as possible.

And now, my mother-in-law is on the fringes of Alzheimer’s as her dementia worsens. Yet another caregiving situation to manage….that’s a story for another day.