Lesson #23: Guilt, Grieving and Giving In

I’m putting myself right out there with other family caregivers today, and admitting that I’ve been fiercely protecting my “me-time” this month… those oh-so-valuable hours when I can push away my worrying, do something positive, take time to recharge, and shrug off the heavy emotions that weigh me down daily. I can’t even think about this without feeling enormously grateful to my sisters, my brother, and the amazing caregivers who are now in place to help meet my parents’ increasing needs.

This is allowing me a little more flexibility in getting back to work, although I’m not there yet. I haven’t had a lot of time to market myself and, to be honest, I’m nervous about the stress of deadlines on top of everything else. Maybe it’s my November gloom, but I feel more fragile than ever before. I wake up obsessing about my parents and wanting to do more for them, even though they probably have better care than most of their peers. I’m constantly second-guessing myself, wondering if I’m doing enough, if we’re doing all we can, if something is being overlooked… that in itself is exhausting. And yet telling myself to stop worrying is about as useless as telling myself to go back to sleep when my to-do list presents itself at 3 a.m. Might as well roll with it. 

My emotional fragility seems to mirror my mother’s at times. She, too, has been in some distress this past week, and I can’t help but feel it’s because of my pulling back and taking on a less active role. To ease the transition, I’ve been dropping in every day for a few hours at different times. Too often, though, these visits are resulting in my mother’s tears when I prepare to go, with her eyes pleading with me to stay. And maybe it has nothing to do with me! Maybe she is just entering a different stage of her dementia, and experiencing a foggier, more confused state of mind. Either way, though, the pain I feel on her behalf is real, the guilt I feel when I leave is sharp, and the episodes drain me.

I read recently about how caregivers, on the front lines of this battle, find themselves in a constant state of “anticipatory grief”, a complex and powerful feeling of loss. As explained in the book*, anticipatory grief is a feeling of loss before a death or dreaded event occurs. It can result in mood swings, crying spells, anger, depression, an inability to concentrate, forgetfulness and changes in the caregiver’s health. Bingo! The author says it is often dismissed as a bad mood, but can be much worse:

“Your thoughts jump around from past to present to future, a cycle that can make you think you’re going crazy. You are dealing with an incomplete and prolonged loss. If caregiving lasts for years, this loss can contribute to your exhaustion. Each day is filled with anxiety and dread.”

When I read this, I realized how true it is; and that this type of grieving is not specific to any disease state or age group. Whenever a person suffers for a long period of time, it shreds their soul and the soul of any empathic person around. Long suffering, for both the person suffering and their care partner, is relentless. There is no helpful perspective. Looking back, looking around and looking forward are all equally tricky.

Everything is always changing…
I keep wanting to get back to my perky old self, but I’m starting to think that she is a memory, not an interrupted state. It’s quite possible that the person I was before I began this journey is long gone, making way for an entirely new version – one who is learning the importance of patience, perseverance, balance and dignity, while also learning to speak better in the language of love.

Gazing into the future is not something I do often, and yet the sombre reality of my parents’ decline is very much a part of my existence. It’s not as if my parents are going to get better. There’s no happy ending here, just hopefully a beautiful one. And to live in the shadow of that hope can be painful, there’s no denying that. Because we certainly can’t control life or death and we absolutely can’t fix everything. I have to keep reminding myself of that. We can only do our best and trust that there will be no regrets. 

And we can only do our best when we’re at our best – so this post is a reminder to all caregivers to take care of themselves. Don’t feel guilty about that chocolate bar you stuffed into your mouth last night, or that hour you spent sitting and staring at the wall after having a good cry or a private hissy fit. Don’t chastise yourself for ignoring social commitments if you’re exhausted. Don’t feel that you have to look your best if you don’t feel your best. More importantly, recognize and accept that you are in a state of grieving, that you are experiencing more emotions than the average person, and that you need to be kind to yourself, on top of everything else. Embrace your sorrow, let your heart ache, give anger a place without letting it root, and find those moments of joy which are always there.

Easier said than done, I know. And if you’re feeling this way, just know that you’re not alone. Find some comfort, for starters, in knowing that we’re all in this together.

To be fully alive and completely awake is to be continually thrown out of the nest…
– Pema Chodron



*The Family Caregiver’s Guide, by Harriet Hodgson, available from Amazon. 


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