Some people are shocked by my candidness in my book, Mothering Mother–about my resentment, my anger, my fears about caregiving. I wrote my book in “real time,” as I was caregiving, so the exhaustion, the confusion, the rabid fear are all there–blemished and flawed. Even though my story is at times, scary, I would have given anything for such a guide–for someone to tell me the truth about caregiving–however gritty it might be.
My mother had Parkinson’s for years. We had grown accustomed to the medications, the schedule, the times or days when nothing worked–and while it was challenging, we had no idea what was to come. My mother also had some heart disease. She had had a mild heart attack and was taking medication, but it was nothing like my dad’s heart condition–he struggled for every breath. But the coup de grâce was when she started showing signs of dementia/Alzheimer’s. It was like juggling five plates in the air while tap dancing on an open fire. Alzheimer’s tested my mother, me, my family, and all of our relationships in every way possible.
So I thought I’d recap a few truths I learned about caregiving along the way.
- Caregiving will uncover every fear and flaw you have. This isn’t to destroy you, but it is an opportunity to learn about yourself.
- Do what’s in your heart. Don’t care-give because you think you should do it because you love someone, and do it in the way that’s best for you–part-time, full-time, in your home, in theirs, placing them in a care facility–it’s nobody’s business–you’re the one giving the care and it’s between you and your loved one.
- At times, you will over-extend yourself–BIG TIME. You will be sleep deprived, perhaps abuse some substance–food, alcohol, sleep meds–just to get by. You will at times, ignore your health, ignore your other relationships, and take yourself to the bitter edge. It’s just part of the process. Sometimes, there’s no one else to help you, and you go and do and push past what’s sane or smart. Just try not to stay there.
- You will be really ugly. You will curse, get violent (hopefully with a pillow). snap and yell…and you’ll feel really bad.
- You’ll want to quit, give up, and run away. It probably won’t happen on a bad day, or a day you lose your temper. It will just come over you. A calm, “I’m done,” feeling. Sometimes it happens because you’re so bone-tired you can’t see straight, and for others, it’s because you’ve done all you can and something in you knows you need to stop.
- You probably won’t get to quit caregiving when you want to or need to. Exits usually have to be planned. Your love and commitment will keep you from just driving off. Fantasize about it all you want–it’s a great stress reliever, but when it’s time for a change, make a plan that’s good for everyone.
- Alzheimer’s in particular taught me to dig deep inside myself and decide what kind of daughter (and person) I was going to be. Was I going to be mean just because my mother was mean to me? Was I going to let go of all the petty hurts that had built up over the years? Was I going to be able to hold true, love deep, and stay committed to my mother’s care even if her mind completely unhinged? These were the challenges I faced every day–the ethics of the heart that I had to ask myself again and again.
- There are things you’ll never tell anyone. Both tender, private moments–and times when you really lost it, or didn’t do what you know you should have done. Eventually, you have to accept all aspects of caregiving. You’ll have to incorporate all of you–forgive yourself for things you’d never want to admit, and even praise yourself for the few times you really stepped up to the plate. Most people have a harder time accepting the good in them–than admitting to their dark side. Sad, to think that we can hate ourselves easier than love ourselves.
- Death is really scary, but you can do it. If you’re one of those people who haven’t been around a lot of people dying in your family, then all this is going to seem really foreign. Death and dying are like a lot of things-it’s more scary in concept than in reality. When it’s your mom, dad, brother, sister, spouse, it’s in some ways cathartic. It’s finishing something. It’s biological and quiet. Part of it can be a grueling pressure, and if the dying process lasts for days or weeks, it’s really, really hard–but by then you’ll need to stay and see it through. You’ll be glad you did it. There’s something about closure that’s really, really important. Don’t miss this part of your journey. There’s much to learn. It’s also healing, whole, and part of what it means to be here on earth.
I now look back at my caregiving years with a sense of reconciliation. It didn’t happen all at once. The first year after my mom had died, I felt that I killed her–that I had let her down. I couldn’t keep her alive. I had to accept me, her, her–Alzheimer’s and all.
How else will we learn if we don’t accept the opportunities and circumstances that come our way?
[…] This post was Twitted by AlzheimersRead […]
Great read. Well done. Linking….Glen
[…] ARTICLE FOUND HERE: https://caroldodell.wordpress.com/2009/08/14/the-truth-about-caregiving/ Some people are shocked by my candidness in my book, Mothering Mother–about my resentment, my […]
Every sentence you have written resonates deeply inside me. I am a caregiver too (my mother has dementia). Reconciling to this role has taken a long time, and even now, there are days of overwhelm and fear, and when I notice areas I need to ponder about and resolve.
Honest sharing with other caregivers help; thanks for sharing.
Swapna Kishore
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