The Caregiver's View: Part 1

As National Family Caregivers Month comes to a close, we wanted to share with you a personal and in-depth interview of the caregiving journey of two of our patient advocates, Angela Robb and Angie Hott. By sharing their stories, we hope to continue spread recognition of how crucial caregivers and care partners are in their loved one's lives.

What’s the biggest care challenge you’re currently facing as a care partner?

Angela: Not sure if I have a “biggest care challenge” right now – more like life challenges! Maybe care challenges are just life challenges cloaked in caregiving themes. There may be a lot of caregivers/care partners who can relate to this dilemma. I recently met a fellow PD care partner who said something to the effect of “I really didn’t know I was a caregiver because I just do what needs to be done and it’s part of my life”. I can completely relate to this thought - that life is good and living as a care partner is just what I do.

Right now, my Parkinson’s disease care partner role is coasting right along. My husband, Karl is doing very well! He’s exercising regularly, actively engaged in his work projects, and our life. My biggest challenge recently hasn’t been as a PD care partner, but as a long-distance care advocate for my mother, who has just been diagnosed with a chronic condition. I’m now more aware of the struggle of being present for my husband and my mother, at the same time.

My current challenge is making time to do the things I need to do for work, home, volunteer tasks, and myself. For example, just carving out time to answer these questions took me a few weeks to set time aside to gather my thoughts then sitting down and typing them up!!! I feel so behind the curve just trying to keep up with my commitments. I’m trying to do the most urgent first and really have had to work very hard to carve out the times for even these most urgent commitments. So, if I could just get a few steps ahead on my to do list, that would be great! It would help me reduce some of the mental stress and anxiety I have.

Angie: Sleep! How crazy is that? But, honestly, I feel like the last month "sleep" has been the biggest care challenge for both my husband, Dan, and myself. Sure, as I continue to watch my husband's symptoms progress, I am concerned about caring for his symptoms down the road as Parkinson's disease progresses. Frankly, when I see patients with advanced PD in the waiting rooms of the Baltimore VA or Johns Hopkins Hospital, the thought of being a care partner scares the crap out of me! When, actually...I guess..., these small glimpses into other families living with PD is gradually preparing me for what lies ahead. I suppose the fact that Parkinson's progresses so slowly is a good thing; like...it will give me time to adjust and prepare for the next stage.

Sleep. Along with the long list of symptoms like stiffness and rigidity, Dan's once ability to sleep through the night is interrupted with restless nights, severe cramping, and the most disturbing of all: nightmares. Frequently, he would wake up cursing and physically violent, until finally the neurologist prescribed him with clonazepam. After careful management of this new med, Dan was able to rest peacefully through the night almost regularly. With a peaceful rest, the following day's Parkinson's symptoms seemed to be more manageable. Occasionally, a nightmare crept back to the bedroom now and then,... until about three weeks ago. Guess what happened?

The VA messed up his prescription. Now nearly three weeks without medication to help Dan sleep, the nightmares have returned on a regular basis. Without a healthy night's rest, the following day's levodopa is less reliable as well. So, our biggest challenge we are currently facing is sleep. For both of us.

For Dan, it makes him exhausted the following day to get less than two hours of sleep, often causing his PD symptoms to be even more problematic. And for me, it is difficult to juggle kids, home, work, and teaching nearly 400 students. I know this challenge will not compare to those that lie ahead; however, sleep is currently our biggest obstacle.

With all that said, I’m doing very well on my own self-care; going to the gym, doctor’s appointments and other therapies (yoga, reflexology, and massage therapy).

How do you keep communication active with your spouse?

Angela: I like that we share coffee together in the morning and talk about the day ahead – this helps me check in with him. We also use the time in the car to discuss issues that need our attention. Last month, we re-instituted “date night” - where we go see a movie and have dinner, every other week. It’s a great way for us to talk about something completely different and enjoy each other’s company!

If we do have a time where we are not talking to each other but at each other, I try my best to step back and ask myself and him, “What is really going on here?”. I find this very hard to do but without addressing the communication issue, the discussion can get out of hand.

Angie: Well, let me see. Communication is typically pretty active with for us. In fact, I rarely find myself at a loss for words. I have often shared with my classes that Dan will be the first to say that I have a talent for talking. As I see Dan become way more apt to stay home when his physical and non-motor symptoms are at their worse, my constant desire to communicate kinda talks for the both of us. After spending a long day with 8 year olds, I am often eager to have adult conversation and find Dan mostly ready to listen after his long quiet day when he is alone while I am at school. He frequently shares all the latest news I never manage to read, which keeps me up with the latest.

Additionally, our daily routines are well, not so routine. Other than the timely dose of medication and regular functions like house stuff, we always have much to talk about. Mostly, we have to manage the lives of two teenage boys in school, one college daughter at Columbia, and her sister's busy life in DC. Add in a mirage of doctor appointments, older parents to care for, and our various community commitments, our communication is quite active. We typically have a daily conversation just to keep track of each other's whereabouts. And for the more sensitive issues, Dan probably wishes me to be a little "less" active. Fortunately, he tolerates my babble.

And, I am getting used to tolerating his PD silence.

Continue on to Part 2 of The Caregiver's View here.