Alexandra Williams of Fun and Fit shares a deeply personal and important story about dealing with a major life change for a loved one and how she feels – with honesty and candor.
A family member had a thalamic stroke in September, then a TIA (transient ischemic attack) in March, followed by a combination atrial fibrillation and cerebellum stroke in April. These exciting events changed a person who was active, busy, smart and fairly easygoing into someone who has serious memory issues, cannot walk, cannot swallow (which means a stomach tube), is cranky a lot, and will require 24-hour supervision for a long while upon release from the rehab hospital. Are you envious yet?
I write this, not to feel sorry for myself, because I’m actually not, but to share some of the things I wish someone had told me about the non-medical implications of stroke. I would have been better prepared mentally if I’d known more than just the medical checklist. Maybe my experiences will help you if you’re ever in a similar position.
You’ll Get Angry
At first, I was told the September stroke was due to obesity and plaque that broke off into the bloodstream. In other words, lifestyle. I discovered it’s entirely possible to simultaneously care about someone and be super pissed off. How dare he not bother to take care of himself, then put me in a position of having to take care of him? Why should I be a caretaker of someone who didn’t bother?
It now appears that the strokes were also related to an underlying heart issue, which helps me forgive, yet I still want to acknowledge that it’s probable (and permissible) that you’ll be pissed off. I haven’t taken it out on anyone, nor will I, yet I would have appreciated it if someone else in this sudden and unexpected role would have told to me plan on being angry. Be angry without guilt. But also be careful who you share your anger with. Not the patient, obviously. Not your children. And not any family members who will try to talk you out of your feelings or imply you’re a bad person. Friends who understand that it’s possible to be pissed, scared, loyal and responsible all at once are the best.
You’ll Get Sad
Not just for all your loved one has lost, but for your losses too. There is a long, freaking list of losses – sleep, free time, vacations, the ability to come and go at will, companionship, future plans, income, hobbies, predictability, expectations, appreciation, ability to focus on kids and their events, help maintaining the household, illusions, independence, identity, and a lot more but my memory is shot from dealing with everything.
In addition to being sad for the person who’s had the stroke (or heart attack, etc.), you’ll feel sad for your kids too. Even with older kids, the illusion that their parent (or uncle/ aunt/ sibling) will always be around comes to a screeching halt. What do we want more than anything for our kids? To protect them and watch them lead happy lives. I’m sad I cannot protect them. I’m sad they’re unhappy and grieving and helpless. We tell our kids that we’ll always be there for them, and that lie keeps our illusions and theirs going. I told my 21-year-old, “I may be overwhelmed and tired, but I’m still your mom. I’m still here for you. I still have time for you. I have other things I can give up, as you are my priority.” And it made me sad that I had to say that, as our kids should be able to take our “momness” for granted.
You’ll Feel Guilty
No matter what you do, you’ll feel you haven’t done enough, spent enough time, been patient enough, researched enough, updated concerned family and friends quickly enough, written thank you letters to people who brought meals or gave rides– even taking time to sleep or relax will seem like “cheating.” Part of your brain will recognize that it’s impossible to do everything, but that other little nagging part will work on your guilt complex like a dachshund with a squeaky toy.
But you know what?! Let it go, and not in a “Frozen” way. Yes, you are standing while another is suffering, but there’s no rule of physics that says only one person can suffer at a time. You have also lost a lot, and it’s not disloyal or selfish to take time off for fun, or to sleep in, or accept help. Bottom line – if you aren’t taking care of yourself, you’re incapable of taking care of another. Besides, that would put you in a never-ending loop, as I just mentioned above that it’s normal to feel angry about someone else not taking good self-care. If you’re too exhausted to function well, someone else will have to step in and rescue you. I doubt you want that.
The martyr thing is a dead-end, and renders you useless. Yes, of course you will do everything you can, and it’s a given that you will provide compassionate care and handle the extra load. We all know someone who has been or is a caretaker, and we all admire them for their selflessness, right?! Speaking only for myself, I know I’m not selfless or selfish; I’m just a responsible person who tries to do the right thing.
And I think part of doing the right thing is saying that you are not alone if you end up angry, sad and guilt-ridden. It’s just part of the deal.