Got Guilt?

Part 1 of the trip every long distance sibling takes

Guilt. We’ve touched on the topic a few times already here. The Alzheimer’s journey comes with a Samsonite factory of guilt to unpack. Today we’ll reach into a piece of it I know well — the guilt that went along with being the long distance sibling.

DISTANCE—THE MIXED BAG

For a long time I thought I did not have grounds to even write about the Alzheimer’s experience because I had lived so far away during it. Caring for Nina had been comparatively easy for me so far. I had distance, and space, which allowed me to avoid dealing with the complicated logistics and pure work of every move and of daily care.

I didn’t have to engage with caregivers or mobile dental visits, deal with UTIs and changing medications and diaper supplies; I didn’t have to consider, every day, if and when I would visit, or rationalize not having the energy or patience or humor to sit through an activity session. I also had the luxury of shaking off the sadness. Our new, drastically changed reality impacted each of us differently, and me only in episodes. The rest of the time I could live my life with the freedom of knowing my sisters were there caring for Nina, responding to any issue that came up, assuring her she was loved.

Distance from family is always a mixed bag with advantages and challenges. On one hand, it’s easy to avoid drama and conflict; but you also miss out on big family events and the little day-to-day interactions that guide family evolution. I was already having trouble with mom’s transition, and living 3,000 miles away didn’t help. There were plenty of times, alone on my side of the country, when I’d just start crying, wanting to be next to her, trying to make her feel better even if that would only make myself feel better. And sometimes you just want your Mama. Even if so much of the mom I knew was gone, she still lit up whenever she saw any of us, and I missed getting that hit.

There were also practical complications of living far away. Each crisis (starting with Dad’s heart attack there would be many) came without warning and upended my life. I spent the night on the floor of the Denver airport; cried at the ticket counter in Boston when the last flight of the day got canceled and I thought Nina had mere hours to live; limped through presentations after taking the redeye home; left kids with friends with no notice, and so much more. Through it all was this guilt. As discussed in “The Art of the Outing” guilt was my constant, bummer of a companion.

FULL CIRCLE

In the 20 plus years since I’d moved away from home, this was the first time I’d felt guilty about it. It was ironic that I was the kid of the family to move across the country, considering that at age five I had vowed to go to nearby Mills College so I wouldn’t have to leave home, or mom. Just as I never imagined raising a family all the way across the country in the east, Nina probably never imagined raising a family of heathens in the west.

Once she made her choice, however, she never looked back. Growing up, we flew to Boston to visit Nina’s family once a year, for exactly one week. In retrospect that seems entirely inadequate, though air travel in the late Sixties and Seventies was no picnic. Still, even then I wondered how mom could bear to see her family so rarely. I remember her mother Babbie, my grandmother, soaking up those visits, just like Nina soaked up every moment of ours.

A snapshot of cross-country family travel in 1969. ‘

I had re-enacted Nina's path, in reverse. I visited from the east more than one week per year, but never for long stretches and never for major holidays. Nina never asked for more than I offered, or suggested I visit more. She simply reiterated, at every visit, how much she looked forward to our next visit, and hoped it would be soon.

After Nina’s own father died, and Babbie could no longer live on her own, Nina stood by her man, and left her two younger siblings to do the heavy lifting. They found the facility, moved her in, visited her regularly, tended the finances, coordinated medical appointments and communicated with the caregivers. Nina came in for her short visits, but perhaps the guilt of leaving Buck for long stretches of time overrode the guilt of not visiting Babbie. My own guilt was tempered by knowing that Nina understood my choices, and me, all too well.

LOTS OF LISTENING. NO SOLVING

Backstory notwithstanding, guilt gnaws at the long distance family member every day you are not present. The choices are hard and murky; the sibling relationships are a tightrope at all times. Physical distance, and the time between visits, does give you a fresh perspective on levels of decline. This would come in handy later, and would change the course of our journey at the most critical time. At this stage, however, the distance was a pure guilt-making machine.

There were countless days when I felt bad for not feeling bad, or for not thinking of Nina enough, or for being annoyed at one sister being annoyed with the other.

One thing I could do was field phone calls from my siblings, and be an outlet for whatever, or whoever, they needed to vent about. I can only hope that they were able to vent to each other about me, and that offered them some relief. I tried to use the distance advantage to understand, forgive and sometimes ignore when that seemed wisest.

It was clear that there was a lot of tension surrounding the topic of how often to visit Nina. Did it have to be every day or was every other day enough? Was a daily visit to Nina more important to her health than the mental break of a day off for my sisters’ health? I wanted to be sympathetic and supportive to both without throwing either under the bus, because, frankly, there just wasn’t enough room under the bus for all of us. I didn’t know the right answer, even if there was one, and the guilt just kept growing.

CINDY WISDOM

My friend Cindy came to the rescue on one of our many walks. I talked about Cindy and her therapeutic sessions way back in Community Matters, and again in The Best Medicine. The youngest of seven kids, Cindy was the on-site sibling for her aging mother, Nancy. As such, she was living a similar drama in the opposite role as me.

On our walks we’d update each other on the “State of the Siblings" and our family dynamics. Cindy has a knack for capturing complex emotions and expressing them in concise terms. When I described the tension and judgement built up around how often to visit Nina, she cut to the chase: “Fuck THAT!”

She went on to make the case for quality over quantity of the time spent. In her own family, and in others she met while caring for Nancy, she’d seen the gamut of caregiving tactics: the “full martyrs” who give themselves entirely to the care of others, at their own expense; the martyrs-on-record who show up to alleviate their own guilt, but are on their phones or otherwise distracted half the time; the long-distance siblings who swoop in with cheer and energy, and, upon seeing their outsized positive affect offer liberal advice on day-to-day caregiving, diet, exercise, fashion, enriching activities, etc.

Cindy reminded herself not to take their directives and judgments too personally and blamed it on guilt. “They’re feeling guilty for not being there and they are trying to feel like they have a purpose,” she reasoned. That was big of her. I realized I could use her perspective to inform my own behavior as the long distance sibling. I could help by staying in my lane, knowing when to step in and when to stand down.

Coming Up

And that, my friends, is what Part 2 of this breezy little Guilt Trip exposé will cover.

Thanks for reading and see you next week.