This last Monday my mom had a caregiver in her house for the very first time.
I was incredibly anxious about how things would go. My mother had been incredibly anxious about it as well, as she felt like I was buying her a ‘keeper’. She didn’t tell me that until after her first day with her caregiver, and I don’t know that her feelings would have influenced my choice, but I’m glad that she was able to be honest with me about her feelings, even if only after the fact.
The happy report after her first day? She absolutely loved her caregiver!
You’d think I’d be relieved, and to some extent I am relieved. I am absolutely thrilled that she likes her caregiver, and since the caregiver is a friend of mine that I trust, this makes arranging medical tests and other appointments much easier.
The problem is that along that all that relief, I also feel incredibly guilty.
I feel guilty that I didn’t demand that she get in-home assistance much sooner. The caregiver’s observations reveal that my mother is far more confused and incapable of adequate self-care than I realized, and I have suspected the onset of dementia for over a year now.
I feel guilty that I didn’t have the guts to talk to her about her cognitive decline sooner. It took a series of crises over the summer, followed by a week of strange behaviors that were concerning enough by themselves; combined the behaviors and crises were such a red flag that I couldn’t remain silenct anymore. Confronting her was painful, and her PCPs unconcerned, almost non-response was frustrating. My mom’s primary care physician gave her a list of neurologists that she recommends for cognitive evaluations; I had to beg the neurologist for a copy of the list as my mom loses just about every important paper she is given. Later that night I had to reassure my frantic mother that her PCP did not want her to schedule an appointment with all 14 neurologists on the list. It has taken weeks just to get to the point where we can have a functional MRI, and we still have another cognitive evaluation to go before we get the results. I confronted my mom about her decline in mid-August and it will be mid-October before the doctor gives us his opinion on what is happening. I know that eight weeks doesn’t sound like long, but I hired the caregiver sooner rather than later because I was afraid of additional crises like the kind we had over the summer. I was also concerned about the difficulty of getting my mom settled with a caregiver as we entered the holiday season, which is stressful even in the best of times.
As I watch my mom’s fear increase as we work our way through the blood draws and medical imaging that will lead to a diagnosis, I feel incredibly guilty that I cannot save her from what is coming. I can’t change the cognitive decline that has already occurred. I can’t save her from the diagnosis she is likely to receive. I can’t relieve her fear of that diagnosis, or change the fact that she has already lost two people in her life to that same diagnosis. I can’t relieve her fear that any other diagnosis regarding the health of her brain would be just as terrifying and possibly worse than the dementia she is so very frightened of. I can’t change a damn thing about this, and it breaks my heart and makes me wish that I could shield her from all of it.
Most of all…
I feel guilty because I’m not the one doing the caregiving.
It doesn’t matter that the caregiver is a close friend that both I and my mother adore.
It doesn’t matter that the caregiver’s observations validate my own observations and evaluation of my mom’s decline.
It doesn’t matter that having a caregiver frees me from constantly worrying about my mom while I’m trying to work during the week.
It turns out that caregiving an elderly parent is much like parenting young children: no matter what you do, you feel like you are doing it wrong, or not well enough, or not soon enough, or somehow not lovingly enough. In the end, I feel guilty for paying a caregiver in the same way that I felt guilty putting my kids in an afterschool program just so that I had more hours for uninterrupted studying while I was in graduate school.
Why is caregiving so fraught with guilt? I also question if this is a gender issue. Do men carry this much guilt when they are caregiving, or is this some ridiculous social construct forced onto women a society that tells us that we can never be beautiful enough, patient enough, feminine enough, sweet and accommodating enough… Basically, caregiving appears to be just another ruler for measuring women that relentlessly demands we be more than is actually humanly possible, leading us to realize that no matter how hard we try, we will never be enough.
I don’t have any answers for these questions, and I imagine that I will not get any answers any time soon. I’d spend some time living into the questions, but the reality is that I have to keep making decisions about my mother’s care and the issue is advancing rapidly enough that I don’t have much time to sit with the questions before I’m moving on to the next phase. So it looks like I’ll be taking my lunch from the guilt buffet for the foreseeable future.
Don’t get me wrong: there are plenty of people in my life telling me that I am doing the right thing. There are so many other families that have walked this path before me. Everyone I talk to tells me stories of frustration and fear; they talk about feelings of inadequacy and guilt. To a one, they tell me that they lost patience with their parent and hated themselves for it. They tell mee that they struggled with grief even though their parents were right in front of them. I have plenty of people who know the song I am singing, every verse and chorus, and they are more than willing to sing along with me with me so that I don’t feel alone. It’s just that singing the chorus of guilt and frustration doesn’t actually relieve the guilt and frustration, and it doesn’t make me feel any more certain about the choices I am having to make.
The only reassurance that I can give myself comes from the last time that was a caregiver. My father’s dementia was stealing him away from my family faster than we realized, and my friend Teri was dying of metastatic breast cancer, exhausting her husband who was trying to care for his dying wife and three children at the same time. At that point, I was living minute by minute, and I didn’t have a master plan then either. Guilt was a daily companion as I often thought of fantastic ideas for helping Teri’s husband or her children that would have been perfect if I had only thought of them about six months earlier.
In the end, all I could do was deal with the crisis of the moment and respond with as much grace and patience as I had at that moment. It wasn’t perfect, and it often wasn’t the right answer. But in the end, after both my father and Teri were dead, I looked back and saw that I was right there in the fray with them, fighting through the challenges and the setbacks and the terrifying test results…and when I looked back at those moments, I found sweet memories. When I looked back at the two years of ever-increasing time spent caregiving, I found that I had no regrets, even though I was stumbling and bumbling through each crisis.
I guess that ‘no regrets’ is all that I can aim for now. To be there in the fray of whatever illness is diminishing my mom’s brilliant mind, day after day, fighting through the challenges and the setbacks and the terrifying test results right by her side. I suppose I’ll feel guilty right up to the end; I did last time, and only found that I had no regrets in retrospect, after I had time to process and begin to grieve my loss. I suppose that might be enough now—to have no regrets when all is said and done.
So for now, I’m the slightly inadequate daughter/caregiver, and I’m guilty as charged. And when it’s over…
When it is over, I’ll cry and cry and cry, and with any luck and the grace of God, I’ll have no regrets at all.