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If you are a caregiver, chances are you have heard “God doesn’t give you more than you can handle” a time or twelve. I think people who say this truly believe this well-meaning (?) sentiment. I beg you, please don’t EVER say this to a caregiver. Chances are, you haven’t been in their shoes. And more importantly, nobody knows what another person can handle. While some people can handle changing urine-soaked compression stockings, giving enemas, and changing adult diapers with grace, others find it harder to handle.

I will say that it’s amazing what you are able to handle as you take on a caregiving role. Most of us probably thought we could have never given our family member a shower, changed a diaper, or even harder…changed a diaper in the bed when the patient can’t help. I didn’t have to do this often, thanks to our amazing overnight caregivers, but when I did, I was not afraid to close the adult diaper with duct tape when the diaper ripped. If you have cared for a brain-injured person, chances are you have been hit, kicked, punched, pinched, and/or bitten. You have definitely been cussed at! Again, some people handle this with more grace than others. My point here is that caregiving is downright HARD on many levels. Instead of offering sentiments, offer your friends and family some HELP! *rant over*
XO,
Lucy

Holy cow – I haven’t blogged in 4 years. Caregiving really takes over and lots of things go by the wayside. If you are reading this blog, you know EXACTLY what I mean. My Mom died 2 years ago after 12 years of living as a total care patient. I can’t believe we were able to care for her until the very end. I am so proud of my family – we finished the marathon. I will always remember being in the Emergency Department right after my Mom’s brain aneurysm burst. The neurosurgeon told us “it’s a marathon, not a sprint”.
Boy, was he right.

Some days I didn’t think I could continue caregiving. Our caregiving team got us through the hard times. Again, we were lucky to have help from a wonderful caregiving team who truly cared about my Mom and our family. I realize we were extremely lucky to have the help we had. Now that my Mom is gone, I miss her terribly. I am grieving my pre-brain-injured Mom and my brain-injured Mom. Both versions of my Mom were funny, creative, and had a sharp wit. Both versions of my Mom would ask if I was OK if I sniffled or coughed. Only my brain-injured Mom would cuss me out for seemingly no reason. But I miss that too because it was always unexpected and funny.

What does life look like now? Life is sometimes sad, sometimes happy, and great on the days when I remember something funny or sweet about my Mom. I only came out of the grieving fog about 6 months ago. The first year and a half after she died I lived in a haze. It’s gotten significantly better with time. Time heals, as they say. I don’t know if time truly heals, but it makes it easier to talk about her or the 12 years of caregiving without bursting into tears. Luckily, I am a positive person by nature, so I feel very grateful for that. Caregiving and grieving are both easier if you are wired to be positive.

The hero in our family’s story is my Dad. He was determined to care for my Mom at home, come hell or high water. My brother and I have tried hard to help our Dad enjoy his retirement in the last couple of years. We’ve taken him on a couple of trips, which we all enjoyed. We had to postpone a trip due to COVID, but hopefully we can make the trip after the COVID crisis is over. My Dad retired when my Mom had her brain-injury. So he never had a true “retirement” as he was a 24-7 caregiver for my Mom for 12 years. My brother and I are bound and determined to give him a true retirement of travel and spending time with family. Now that he’s 80 years old, he deserves it!

XO
Lucy

I racked my brain this past Mother’s Day on something fun to do with my brain-injured Mom to celebrate.  We have a painting place in our neighborhood (I live a mile from my parents to help with the caregiving) – you can go and drink Mimosas and an artist shows you how to paint a picture.  Perfect!  Off we go to paint a picture.  When we arrive, there are 4 ladies loitering around the handicapped parking space where they just parked their 4 able bodies.  Obstacle #1 – no big deal.  Since it’s the only handicapped spot I ask politely if they will move their car as we have a wheelchair to unload.  They moved their car but the driver loudly asked “what difference does it make” so I replied “it does actually make a difference because the ramp is here and I need the space on both sides of the wheelchair van to unbuckle my Mom”.  I brushed it off as “I hope they learned their lesson” and my Mom, the caregiver, and I breezed into the painting place.  Obstacle #2 – the same 4 able-bodied ladies were at the table that would have been easiest for us with the wheelchair. Whoopsie Daisy.  One of the ladies realized we were struggling and offered her table to us for my Mom and her caregiver.  Drama over and let the painting begin!  Obstacle #3 – my brain-injured Mom keeps trying to paint her caregiver with the brush.  I head over to the bar to turn in my Mimosa ticket and for good measure, use my Mom’s too.  1 Mimosa into the painting I ask my Mom if she’s having fun.  “No, hell, no, why would this be fun?” she asks.  I tell her she is very artistic and it’s Mother’s Day, so we are doing something FUN!  We are having fun, dammit.  Aren’t we? The good natured caregiver giggles and continues painting/keeping my Mom from using the paint brush as a deadly weapon.  2 Mimosas into the painting I realize my red poppy flower looks like a UFO on final approach. I tell my Mom I’m having fun regardless and after all, it’s nice that we can do something fun on Mother’s Day.  “Oh, damn, it’s Mother’s Day?” she asks.  I tell her it is and she says “Oh, good.  Good, good, good.  I love you Lucy.”  Totally worth all the prep work and drama to get that one moment with my Mom!

XO Lucy

Hello to my fellow caregivers!  If you’re reading this blog, chances are you are deep in the caregiving streets!  I am in my early forties and have been a caregiver to my Mom since her brain injury 10 years ago.  10 years has gone by in the blink of an eye and verrrryyyy slowlllllyyyy all at once. Some days I don’t know how I keep going and that is WITH caregiver help. We are very lucky that my Mom purchased Long Term Care Insurance 2 years before her injury (lucky, lucky, lucky!) – so those of you who are caregiving without any help, I don’t know how you do it.  I often don’t know how I do it, even with so much help from wonderful caregivers.  I hope to connect with other caregivers as we are the only people who truly know what it takes to get through the days with total care patients. Friends and family try to understand, but they won’t get it until they walk a mile in our caregiving shoes.  Join me as I blog my way through the ups and downs of caregiving!  XO Lucy