“No judgment, but I could never do that.”
“I wish she would go to assisted living. She wants to stay in her home, so I have to deal with it.”
“I can’t keep this up, but I made a promise. She would hate me.”
I hear these types of statements from caregivers when discussing finding a place for their loved ones all the time. I even said these very things. After all, I had made a promise to my mom beginning when I was eight years old, and she was diagnosed with her illness. She begged me to never let her go to a “home.” She believed it would be tantamount to killing her. This fear she had became my fear and so, for decades, I “filled in the gaps” of what she could not do so that she could be “independent” and live at home. Even as it became more and more difficult for her to tend to herself, including the very basic of tasks and even as it became more and more difficult for me to fill in the gaps, “moving to a home” was not on the table.
As the therapists and doctors began encouraging it, I kept my promise to my mom.
After all, what kind of daughter breaks that kind of promise? A terrible, selfish one, I thought.
The undercurrent of judgment that “putting a loved one in a home” is somehow a breach of trust, a break in a contract, or even abuse or neglect permeates the family caregiving space. Sure, they will say, “No judgment,” but it’s there.
Like those who place their parent in a facility of some kind are somehow weaker, less dedicated, or selfish.
It took me a long time to break free from the misconceptions I had about what it would mean to allow my mom to live in a nursing home. It all came back to my promise and what it would say about me if I broke that promise. I could not reconcile being a good daughter or a good caregiver with the idea that I would “put my mom in a home.” This constant struggle, one where I was falling apart emotionally and physically and needing something to change with the part of me that thought making the change that was recommended by doctors, care team managers, and medical professionals would be “killing” my mom.
I started to examine my promise. Why I had made it and what exactly I was promising. I realized I was asked to make this promise without understanding it. I was a child, after all. By the time I was an adult, I had internalized my mother’s misconceptions and fears. Those perceptions kept me from examining the reality of my mom’s situation and the opportunities for her care beyond what she deemed acceptable, namely me and others who could tend to her in her home. While we did “make it work” as long as it did, when being in her home was no longer safe, regardless of how much help I or others could give, what then?
So I went back to the promise. I could understand that I made a promise without knowing what it meant, but what about now? Did I still believe that “putting her in a home” would be killing her? And even if I didn’t? Did that matter if she didn’t want to go?
Of course, there are so many horror stories about assisted living facilities and nursing homes that it can be easy to assume that any care provided by a family member must be better. I decided to take a more narrowed approach. I didn’t need my mom to want to go anywhere; I needed her to feel comfortable and safe in a place—or at least more comfortable and safe than she did at home.
And by the time I had to confront my promise and what it would mean to “break” it, my mom was no longer feeling safe or comfortable. She was scared and in pain, and we were running out of options. In fact, she was in a short-term rehab and they were recommending long-term care. Immobile, incontinent, chronically ill, and very weak, my mom would need 24-hour care, something that we could not afford. This facility, which had treated her well during her short-term stay, had a spot available.
Now it was up to her, to me. The promise. It all came back to the promise and what it would mean to break it.
What do you do when the promise you made is the very thing that is keeping you from doing what you believe is best for them?
I could no longer keep my mother safe if she came home. Even though I had promised to keep her “home,” was that promise null and void if doing so put her in danger?
I decided to reframe my promise. I had, for so long, believed my role as caregiver for my mom was to do whatever she wanted. She had her full faculties and was very knowledgeable about her illnesses, so I was to facilitate and support her wishes. We made decisions based on what it took to “keep her home.” However, I began to rethink my role as her wishes put her and her caregivers in danger.
I told my mom, “I know I promised not to put you in a nursing home, but I think it is more important now to make decisions based on what you need to be safe, not necessarily to be home.”
I went on to say that because there was no way to keep her safe at home, we needed to consider the option we had avoided for decades. She could stay where she was already receiving good care from a kind, knowledgeable, and compassionate doctor. Or, if she chose to go home, it was just a matter of time before she got an infection, had another fall, or worse.
In the end, I did not have to break my promise. My mom agreed to stay.
Almost two years have passed, and she has had ups and downs, but our relationship is still intact. I am still her caregiver, supported by the amazing staff where she lives.
Is it perfect? No, but neither was her home situation. I have to remember that.
I don’t know what is right for you and your loved one or what opportunities are available. But I do want you to know that sometimes we have to do things we don’t want to do or they don’t want us to do what is best. Will it be perfect? No, but understanding that it is ok to rethink, reframe, and reexamine our roles as caregivers is vital to providing support and care without breaking ourselves apart.
If you need help with that process, I am here to help. Message me to discuss how I can support you in your caregiving journey.
Thank U for sharing the struggle of your decision process. I appreciate your strength and courage. You are a good Caregiver and a Loving, Caring Daughter.
I hear you and agree. The toughest part of the rollercoaster or role reversal is contradicting our loved ones wishes, for the sake of their safety when things are untenable. How and when 'that' journey point is reached can be traumatic.
As you've noted, the availability of options/resources/services is a key question. Here in the UK,
- social services are under-resourced (people, money, etc.) and overburdened. Availability and finance trump quality, unfortunately.
- The agencies that provide support, care homes and hospices are usually not-for-profit businesses/charities & many are now being hit with an increase in business costs
You can imagine the heartbreaking situations I read about in the Carers forums.