Happy Mother's Day

Mother’s Day is a wonderful celebration of Moms. Whether it is going out to a brunch buffet with your family (which I am doing today) or your kids bringing you breakfast in bed (which mine have done many times in years past) or calling your grandmother who lives a few hours away (which I will do later today), it is a day to pamper Mom and reflect on what Mom means to you.

It’s a day to give your Mom a hug and tell her how much she means to you. Yes, even if she nags you sometimes! (Which, of course, I never do . . .).

Mother’s Day can also have difficult moments for those who have lost their Mom. Other Brother, Robert and I lost our Mom almost twelve years ago and we still think about her and miss her. She wasn’t perfect (because, really, who can be a perfect Mom?) but there’s no one like Mom.

Weighing the Risks

It has been just over a week since Robert got six staples in his head after falling during a seizure (and that was with his helmet ON!). It actually took longer than I expected but the New Home would now like Robert to use his wheelchair at all times (apparently, they didn’t get wind of the doctor’s bubble wrap idea so are going with a conventional solution).

Our family has been trying to balance Robert’s independence with his safety for most of his 45 years. We have always leaned toward independence over safety which means sometimes Robert gets hurt.

It is certainly a balance we struggle with. I would prefer Robert be both independent and safe but his abilities change (daily, it seems) which means we have to adapt and constantly weigh the risks of what he can safely do. It does not mean we are evil, neglectful, irresponsible or thoughtless. No matter who says we are.

Little Robbie

Before Robert was “Robert,” he was Little Robbie and Little Robbie was a little terror! I even wrote in my diary once that I didn’t like him (yes, there were such things as “diaries” and “pens” before Facebook). I was probably ten and knew everything and he was five and couldn’t sit still. He loved to destroy things; he wouldn’t listen to me; he got lost in every store we visited. Curly hair with round cheeks and a stocky build to go with them; blessed with dimples just like Other Brother and me.

At ten, I didn’t have the patience for him. I pulled out my treasured diary one day, took the tiny key out of its hiding place (long since forgotten although Other Brother may remember as I’m sure he sneaked a peek at it occasionally) and unlocked the book holding all of my deepest secrets (like which boy I had a crush on that second and how much I LOVED John Travolta and Peter Frampton).

“I don’t like Robbie. I don’t know why. I know I should love him but most of the time I don’t.”

Ugh. Brutal. Since I’m so good with guilt, it still stings a bit when I think about it.

I think about that little guy and know that I loved him in spite of him being a typical annoying little brother. And in spite of him having this strange thing called "Epilepsy."

He must have expended most of his energy in those early days because he moves pretty slowly now (unless he’s pushing his walker downhill, then he picks up some speed!). He’s grown up into a polite man who didn’t have the same shot at life that most of the rest of us do but who makes the most of his days and who probably lives in the moment far better than anyone I know.

He plows through his Word Search puzzles with the same intense concentration that I have when working on the Budget at work. Robert continues to shave and brush his hair and dress himself even though it takes him ten times as long as any of us (although it does take me a while to choose which shoes I’ll be wearing for the day).

Robert does not get discouraged. He perseveres through seizures and trips to the hospital and people staring at him because he wears a helmet. He only shows his stubbornness when he isn’t allowed to do something he thinks he should be able to do (like standing up to close a bus window while it is moving).

Robert enjoys simple activities like going to the park and flying kites. He recently went with Day Program to the park and they flew kites. That night, Robert told me when he flew the kite it went “way up high. Way, way up high. I mean, it really went way up there!” There was a flash of Little Robbie when he told me about flying that kite. The excitement, the newness of an experience, the pure joy of accomplishing something. Day Program shared with me that they had a hard time getting the kite back from Robert since he was enjoying it so much!

I didn’t have patience for Little Robbie but Robert teaches me patience now (it’s sometimes difficult for me to transition from “work speed” to “Robert speed”). He flashes his dimples when I visit and gives me a smirk when he’s won yet another card game. Obviously, he doesn’t hold grudges either.

Either that or he didn’t read my diary.

Caring for the Caregiver

When I became more involved in Robert’s care, I didn’t consider myself a “caregiver.” I thought that term was reserved for people making room in their home to care for their elderly parents. Boy is that wrong!

One out of every five households are involved in caring for someone aged 18 years or older (and those stats don’t even include the parents caring for a sick or disabled child).

Caregiving comes in all shapes and sizes. It can be a mom caring for her terminally ill daughter who spends weeks in and out of hospitals. It is a woman caring for her husband in their home after thirty years of being soul mates. It is a son arranging care for his father who lives three hours away so his dad can continue to live in his “forever” home. It is a wife and children blindsided by their patriarch’s cancer and ensuring his comfort to the end. It is a daughter and her husband and children making room in their home to provide loving care for her mom who is living with Dementia. It is a son keeping track of medications and doctor appointments after his mom suffered a stroke so she can live independently. It is a sister advocating for her disabled brother so he can live a happy and fulfilled life even with his deteriorating cognitive and physical abilities.

Even though Robert doesn’t live with me, there’s still a lot to do to take care of him (aside from the obvious of finding him a home and a day program): making sure he is well stocked with his personal supplies (7-Up, shaving crème, toothpaste, razors – yes, that is in order of priority!); trying out different protective briefs so he can stay dry at night and during the day; keeping a detailed log of personal expenses (I am his “Representative Payee” and need to report expenditures to Social Security); working with him on behavior issues (repeat after me: no standing on the bus while it’s moving even if it is to close a window); teaching New Home to communicate; dealing with seizures and falls and staples and hospital visits; taking him to doctor appointments; shopping with him for presents for the nieces and nephews; even renewing his ID at the always enjoyable DMV.

Playing cards with Robert sometimes even gets put on the “to do” list instead of something I’m doing for fun. (Don’t judge. I’m just being honest.)

Caregivers tend to neglect their own health with one study even showing that women caregivers are six times as likely to suffer from depression or anxiety than their non-caregiving counterparts.

Support groups are a wonderful resource for caregivers. Because caregiving can be an exercise in isolation, the internet can be a valuable tool. An online caregiving community which has proved to be very helpful and supportive to me and several others can be found at www.caregiving.com. Other helpful resources are Today’s Caregiver at www.caregiver.com, The Family Caregiver Alliance (www.caregiver.org) as well as the National Family Caregivers Association (www.nfcacares.org).

Caring for yourself is as important as caring for your loved one. If you need more assistance than what is briefly mentioned here, please let me know in the comment section and I’ll see what other resources may be of help to you.

Be good to yourself. You deserve it.