Life as a Caregiver

Patrick and I (Johannes & Vineet behind us)

I'll admit when I see a photo of an ALS patient, I look around to determine who is with them. Where is their caregiver? I know, that somewhere nearby, whether in the picture or not, is a "me." Someone who cares for the patient, making sure their needs are met and is responsible for their well being. With ALS, the level of care provided by a caregiver varies by the progression of the disease and areas of the body affected. But as the disease progresses the need to have someone care for the patient is absolute. ALS is not a journey one takes alone.

A few months back, I was sitting outside Starbucks enjoying some hot tea while Patrick was at an ALS Board meeting. A couple of gentlemen sat at the table next to me and began discussing what sounded like a business proposition. I'm not exactly sure of the context, only that one gentleman was obviously trying to sell his company's services for a large project. The man emphasized a number of times that he could commit 100% of his time to the project because he was "unencumbered." He went on to describe that his mother had passed away a couple months back and his divorce was now final so he was excited to be able to put all his energy into his business. He looked about my age - 50ish and genuinely seemed delighted at his newly found freedom.

I've considered this conversation a few times and I'd be lying if I didn't say that I have moments where I'd love to be unencumbered. No responsibilities, no worries and no expectations; and if this where my thoughts ended, I'd likely be in the Bahamas somewhere soaking up the sun. But after my romantic interlude with being unencumbered, my thoughts always drift back to a couple of truths; first, and probably because I am a caregiver, I think, wow I hope this gentleman doesn't get ALS, Parkinson's, Alzheimer's, cancer, etc. because whose going to take care of him? My second and much more significant, is how lonely it must be, being unencumbered.

The life of a caregiver is not glamorous. I hold many hats; I'm a barber, home care aide, cook, waitress, pharmacist, respiratory care therapist, dental assistant, comfort specialist, bug killer, back scratchier, driver, entertainment coordinator, nurse, secretary, manicurist and bookkeeper - to name a few. Caregivers are always responsible, so even when given a break, if something happens, we are the first number to call.

I've been caring for Patrick since his diagnosis, now nearly three years. The responsibilities started with simple things: buttoning his shirt and clipping his nails. Now, three years later everything he does is managed by me from showers to eating. I've learned a lot during this period and admittedly I'm not the same person I was at the onset. I've learned to:

• Find the humor in situations... Things are easier when you can laugh about them. Don't take yourself too seriously... the worst times are when I just can't find the humor in the moment.
• Find things that make you happy and enjoy them like a pig in slop! It's amazing how wonderful that morning cup of tea is when you really give it some thought. Simple things are often the most enjoyable.
• Make sure to have time for yourself; I have a group of friends I have dinner with on a monthly basis.. It can be bumpy sometimes getting out the door, but I always manage to get there and never regret it. Additionally, Caitlin and I go to the movies each month while Patrick enjoys an evening with his old KPMG buddies Johannes and Vineet. We are huge fans of Studio Movie Grill in Rocklin.
• Find a support system filled with people that understand your situation and support you. I have a group of fellow caregivers that I see off and on at various functions and I communicate with them through our vast array of technology options. A big shout to my fellow caregivers: Melinda, Therese, Rebekah, Betty, Lachke, Jennifer, Ron, Steve and Dara to name a few. A special thanks to Cliff who cares for his wonderful wife, Susan and meets me every couple months for coffee at Starbucks. I truly value our friendship. If you'd like to read about the daily life of an ALS patient from the perspective of a patient, here is a link to Susan's blog, http://www.susanssteps.com/

  

  Susan, Cliff, Me and Patrick

• Keep a sense of self. Do stuff that is uniquely YOU, for me that means doing things that are not ALS related, not caregiver related and not because Patrick likes it (although, we've always liked quite a bit of the same things). Just stuff I like... I read Jack Reacher novels, decorate for the holidays (generally a little over the top) and walk Jake, the dog, each morning. This is me.. and it reminds me that I'm unique.
• I've learned how important the job of a caregiver is and having said that I owe a huge thank you to my mom! My mom took care of my dad while he struggled with health issues his last few years and for a number of years was a caregiver to my grandparents (her in-laws). I recognize the tremendous role you played mom and owe you a debt of gratitude! (I know my mom will read this blog because she's always been my biggest fan).

  

  Mom & Gt. Grandson Christian

• Additionally, on the thank you note. Sending hugs and thanks to Sean and Debbie Timmons who regularly visit, bring soda pop (as Shirley would say), take to dinner and spend time with Patrick's mother Shirley. Patrick and I have always felt tremendous gratitude that you are able to be there regularly when we cannot.
• Out of all the things I've learned, absolutely the most important is this, "tomorrow is promised to no one." - Live now, love now, forgive now!-

November is National Caregiver's Month so celebrate the caregiver in your life. We are great in numbers, so I suspect you know someone who regularly cares for a spouse, parent, child or friend. Send them a kind word, give them a hug and remind them that they are important!

I wish you an encumbered holiday season with family, friends and lots of joy!