The Post That Shall Not Be Named

This blog post has alternatively been titled, “Laid Bare,” “Kicked in the Gut,” “Is This a Guy Thing?” and “WTF?” I thought about leaving the prompt, “Enter Title Here,” but that seemed a little too odd.

This post is about how, in the face of loss, differences in personality and coping approaches are laid bare. It’s about family. It’s about needing emotional support and not always getting it. It’s about how we are all human, including my brothers and me.

When my mother was ill and in hospice in 1999, my brothers’ personalities and mine were on full display. One brother responded characteristically by getting organized and applying his keen mind to the problems of medication and comfort; he was utterly reliable, a rock, and a little on the anal retentive side (said lovingly). Periodically his tough outer shell would crack and you could see the anxiety and pain that he held in check.

Another brother seemed to avoid coming around during Mom’s 3 1/2 month illness. He would come be her caregiver if asked, but there was a reluctance. After she died, he poured out his heart in the form of rituals and writing a speech about his memories of her.

From this and other experiences, I have learned how differently people grieve. I place no judgement on it. It just “is.”

We as a family — or as a team of caregivers — are not unique in the variation of our emotions and response.

My fellow member of the Caregivers Social Club (which has a membership of two) went through a health crisis last weekend when her husband, who has Alzheimer’s, was hospitalized with a life-threatening slow bleed in the brain. When we met for a glass of wine Thursday, according to our standing date, we talked about her husband’s sons’ responses. They talked about the brain bleed, the procedure and the prognosis for the procedure. But noticeably absent was any expressed emotion about seeing their father impaired by Alzheimer’s, acknowledgement of their own feelings, or sympathy for how hard this is on my friend — his wife — emotionally. But I know how hard it has been on her. While one part of your brain is whirring away managing symptoms and preventing problems with carefully executed clinical steps, another part is watching, feeling and hurting. She is constantly managing her husband’s emotions with patient reassurance, but most of the time no one is taking care of hers.

This week, I felt like I was kicked in the gut when two brothers cut their plans for visits shorter. Like my friend, I am busy – very busy – with Dad’s medical and physical needs. But I am also a little overwhelmed emotionally as I see new signs of decline arise every couple of days, if not every day. Dad’s not in crisis, but there is a slow-drip of worsening symptoms.

Maybe the mental thought process goes something like this:  Betsy sends near-daily email updates about how new problems have been identified and managed. Needed more caregiver help? She got it. Needed medications adjusted? She did it. Conclusion: “Betsy’s got it handled.”

Part of what has kept me going for the past four weeks has been looking at the calendar to the next date when one of my brothers would come and take over for 5-7 days. Unfortunately, through no fault of his own, the one who was to come yesterday got sick. But oh, did I feel crestfallen.

I wrote an email asking my brothers to start committing to a longer stretch at least once a month. I talked about the physical and emotional challenges, and about wanting make sure that I also spend some time with my husband, who now has my attention and company for a half hour or so before Dad awakens, and about 15 minutes after I come to bed and he falls asleep.

By happenstance on Wednesday night, one brother sent an email shortening his upcoming stay from four days to three saying that he needed to be home. The next day, my brother who had rescheduled his trip from January 4 to January 16 sent an email saying that he was shortening his visit from the requested six days to three so that he could celebrate a family birthday.

I hate asking for help. I really do. I’m a “handle it” kind of woman and always have been. I figure that my brothers know that. I think my emails all but beg for reinforcements.

My friend, Ellen, who I wrote when I was crying and needed to vent, observed that my brother’s email saying he was shortening his planned six day visit to three days contained no expression of feelings. I also thought it was interesting that he didn’t call. Just sent a two-sentence email. The day before, my Caregiver Social Club buddy described the same lack of emotional expression when she conversed with her husband’s sons.

Is this a guy thing? I don’t know. I think it’s a not-here thing and a scared thing. If you’re not here, you don’t see it and can comfort yourself by knowing Dad is getting great care. And a terminal illness – whether Alzheimer’s or congestive heart failure – is scary. Alzheimer’s perhaps especially so because of the genetic linkage (although the sons supposedly don’t carry the same gene).

When family members respond by sharing and pulling together, they grow closer. Unfortunately, the reverse is also true. I’m frustrated, hurt and trying not to be angry.

My hope is that when the brothers visit who have not seen Dad in a month or more, they will get it. They will understand that we need to be a true caregiver team and take turns. And that we each have something to say to Dad, some special kind of comfort that only we can offer. It’s time. Dad needs them and so do I.