Guest post

Caregiving blogs are, themselves, terminal in nature. So far, I have not opted often to write here instead about grief or some other kind of remembrance. My friend Misti Crane did not know Bonnie, but she knows mourning the loss of a mother and she knows writing. She published the below post on Medium, and I asked if I could include it as a Momsbrain guest post. I’m so glad she said yes.

On perfume and permanence

How Mom is still with me after 7 years

 

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Sibs in the City

And just like that, three years have passed since Mom died. Oct. 27 was the anniversary of her death.

Earlier this month, Laura, Jeff and I spent a weekend together in New York to celebrate Mom. The year she died, we got together shortly after her funeral for a November weekend in New York, where Jeff and Laura lived at the time. We decided then that we would gather each fall for a weekend in memory of Mom. I call it Sibs in the City. And we have kept that promise to ourselves.

Below is a photo of us having drinks at the Whitby Hotel in New York on Oct. 6 after seeing a matinee of a terrific play. Our annual agenda would be roughly the same if Mom were along for the trip: some moderately fine dining, but nothing too fancy; a Broadway show – or two, or three; a little shopping; a museum exhibit if we can fit it in; blocks and blocks of walking; and time for a midday nap.

It is something positive associated with losing our mom.

We texted each other on Saturday (Oct. 27), Jeff first.

Jeff: Happy Mom day. Thinking of you two.
Me: Same to you. Will be writing a blog post. Love you.
Laura: Love to you both. You and Mom have been on my mind today.

Mourning the loss of a parent is an unpredictable experience, and we all grieve in our own way. I’m grateful, though, that the three of us have elected to lean into the shared experience, so at least sometimes, we don’t have to do it alone.

Suppression impossible

Why was I breathlessly anxious while walking my dogs this morning?

Why did a bag of spoiled cauliflower in the fridge make me so mad?

Why can’t I recall a single bit of the funny podcast I streamed in the car on the way to work?

Why do I feel that mild sting of potential tears in my eyes?

Hello, heartburn.

Oh, yes. I guess I’m trying to trick myself into forgetting. Today is Mom’s birthday. She would be 81.

Happy birthday, dear Bonnie.

DSCN0201

Mom blowing out candles on her birthday cupcakes in June 2009 at a little party Patrick and I threw for her at the Park of Roses. This was just two months before she transitioned from assisted living to the Alzheimer Care Center. She looks so good.

Bonnie was here

Since Mom died, I’ve wondered if she might visit me in my dreams, and I’ve hoped that I would sense her presence during sleep or waking hours – either way would be fine. And yet, these wishes conflict with my belief system about death – or at least my expectations about my own death. I think of it as eternal rest, in a comforting way, and as the end of suffering for those who are sick. I like the idea of continued spiritual activity and am open to that existing, but I like evidence, too. So I struggle to reconcile the difference between what I think makes the most sense and what I would like to be true.

A novel I just finished has heightened my interest in having a visit with Mom. It’s a story about a family coping with the death of a young boy, told from multiple points of view – the dead boy, his sister, his parents and his aunt, and even the family dog. The boy is fixated on getting a message to his family to help reduce their suffering. They sense his presence in the house and in their dreams. It’s just a piece of fiction, and it interested me because of its focus on grief. But I found myself wondering each night as I turned off my Kindle if tonight would be the night that I’d see Mom in a dream. And I was consistently disappointed. Until last night.

Now, the brain is still largely a mystery to scientists, and we may never have a firm grasp on what the brain is doing during our dreams. But what we think we know is that dreams are, at least in part, an important function for processing information and sorting memories. They are all about us – not about some spirit out there that wants to penetrate our thoughts. So even as I say I want Mom to visit me in my dreams, what I mean, I suppose, is that I want to be able to remember the Mom of 15 or more years ago in whatever way I can. Dreams might be my best opportunity.

Last night, I had an anxiety dream. This is not unusual. I still frequently dream that I am in graduate school and the term is nearing its end, and rather than completing papers or taking exams, I blow off all of my final projects. Those dreams typically end with me standing in line to pick up a transcript – without ever seeing my grades. But last night, I fretted through a dream during which I was desperately trying to book a flight from New York to home, or from Columbus to New York. My brother Jeff and sister Laura had roles: Jeff gave me subway instructions and Laura had an apartment in New York. But mostly, I remember a solo pursuit of searching for flights, roaming through airports and never reaching my destination. And Mom was there. She didn’t do anything or say anything. She was basically inconsequential to the running story of the dream. But she was there, and something about the urgent need to travel related to her.

I’ve never seriously tried to interpret my dreams, but Mom did. I’ve come across notebooks that she kept at her bedside, and I suspect I will find more as I go through her things. I have a theory, though, about what might be going on in my mind. The new year has inspired Patrick to begin going through boxes in the basement, sorting items to keep, recycle, send to family members or throw away. I asked him to leave the boxes of Mom’s things for me to go through, while at the same time declaring that I am not inclined to do that just now. So I feel guilty about foiling his plans to organize the basement and simultaneously intensely curious about what I will find among Mom’s things. There’s really no excuse to keep avoiding the task. I just have to be ready for the emotions. Maybe Mom showed up in my dream to tell me it will be OK.

Anniversary

I didn’t think about this being the two-year anniversary of Mom’s death until about 9:05 a.m. today, when I was in a meeting. That makes me feel guilty, because how could that not be the first thing I think about when I wake up on Oct. 27? But also, given that this 10-day-or-so stretch of October will always be a reminder of Mom’s final days, I guess there is something to be said for the mind’s ability to wander away from a painful past, if only for a few hours.

I will raise a glass in Mom’s memory this evening, and, I’m sure, keep her in my thoughts for the rest of today. Feeling wistful, but not broken. At least for today.

Mom on my mind

I was weary from a 10-hour car ride, my clothes a little disheveled and my arms draped over my backpack and a small cooler to keep them from falling off the tram bench. After 20 minutes on the ferry and now riding in an open-air shuttle to our rental condo, my hair was a wavy, windblown mess. I imagine my face registered the fatigue of the day as well as the satisfaction that comes with arriving at a vacation destination.

“You look a little like Bonnie,” Patrick said.

Mom wasn’t necessarily disheveled on a regular basis before she got sick, but she was typically informal in dress and manner. The same could be said about me, too, I think. I’ve tended to believe all my life that my facial features favor Dad, but there is no question that I share many of Mom’s mannerisms. Slouching my way through a tram ride at the end of a long day would fit that description. My affection for lounging on a couch – any couch – is also a Bonnie trait that I cannot deny. I have a brother-in-law who jokes that Caldwell women have never met a couch they didn’t love to lie on. I spent every evening of this vacation lounging on a couch and I end most days at home that way, too.

It was fitting to be thinking about Mom. This vacation to Bald Head Island, just Patrick and me, was sort of a do-over of our just-us trip to celebrate my 50th birthday 18 months ago, almost exactly, that was interrupted by Mom’s rapid decline and swift transition into an active dying process. We stayed at the same condo and had the same low-key agenda. We had no special occasion to celebrate this time and no need to worry about Mom, either – something that I did during every trip to Bald Head Island from 2005 to 2015. But in my mind, at least, it represented a chance to make up for a vacation gone wrong and also a reason to reflect on what followed that – an intense and meaningful 10-day period spent shepherding Mom through her last days with this most dreaded disease, letting her go and celebrating her life, all the time surrounded by people I love and who love me and loved Mom.

I like to take long walks alone on the island, and I get all mushy about how pretty the maritime forest is and how relaxed I finally am or I dread an upcoming departure and I have a little cry. Last Sunday, I took a long walk and thought about Patrick telling me I looked like Mom and lamented the 10 years of vacation opportunities with Mom that Alzheimer’s stole from me and tried to imagine Mom walking with me on that perfect day. And I had a little cry.

Bereavement leave, one year late

Mom’s death occurred at a difficult time for me – not that it ever would have been a “good” time for her to pass away. But professionally, I was a wreck: Our office had lost four total staff members in the preceding several months, and I was also transitioning from one position to another, which was intended to be a promotion. Unsurprisingly, it took months for the transition to be made official. So I was trying to do my old job as well as the new one, the volume of work was as high as I had ever experienced because we were so short-staffed, and I was trying to prove myself worthy of a promotion without actually knowing exactly what that promotion would be. So let’s just say I was experiencing a tremendous amount of work-related stress.

Some may remember that she also took a very bad turn while Patrick and I were away on a vacation to celebrate my 50th birthday. We arrived at our rental on Bald Head Island, N.C., on Sunday, I got a worrisome call from the Alz center on Monday and on Tuesday, a nurse told me she might not make it through the night. We sped back to Columbus on Wednesday to find Mom stable but showing obvious signs of labored breathing. I spent most of Thursday, my 50th birthday, at Mom’s bedside until about 5 p.m., when I got a massage that Patrick had scheduled for me. That evening, I wrote the first draft of Mom’s obituary.

This year, Patrick and I entertained thoughts of returning to Bald Head Island to try again for a birthday vacation. We thought we would fly instead of drive to save time and have a shorter trip. While I was looking at flight options and finding no good options, I began to cry – not because of the frustrations with scheduling, but because I realized I didn’t really want to go. And not wanting to go to Bald Head is a very unfamiliar feeling. My interpretation of my emotional response is that I anticipated that I would be reliving much of that period of time as I approach the first anniversary of Mom’s death. And the early departure from vacation was disappointing and upsetting and frightening because I thought Mom might die before I got home. So, for now, no October visits to the island. We now have our eye on a spring trip.

I am thinking a lot about that difficult week last year, from the Tuesday (Oct. 20) I realized we needed to get home to the next Tuesday, Oct. 27, when Mom died. I don’t care that it all occurred around my 50th birthday – that created an interesting symmetry to my caregiving life. Mom was diagnosed a couple of weeks after my 40th birthday and died five days after my 50th birthday. Ten years, and 20 percent of my life – for some reason, I find meaning in that timing.

But I do regret how bad I was at taking care of myself. I finished my vacation time watching over Mom and spent two days of the following week by her side and the third just collecting myself on the day after she died. I went back to work two days after her death, at that time thinking that keeping busy would be better than being alone at home. (My brother and sister had the same experience – they missed very little work and had to travel two weekends in a row. And when Patrick’s dad died in 2013 and he struggled with taking time off of work because he would miss an important meeting, I said to him: Nothing is more important than your dad’s death. And your colleagues will understand that.) We had the memorial service on Saturday, and I returned to work on the following Monday. And it was clear to me that day, and for many days after, that I should not be at work, that I needed time to grieve and to rest. But I didn’t. I was so desperately busy – all of us in my office were swamped – and I just felt I would be consumed with guilt if I took more time off. Guilt would be worse than grief, I reasoned.

Today, one year later, we are at full staff and I’m no longer uncertain about my role in the office. That makes taking time off easier, of course. But I also have a different perspective about self-care and don’t intend to deny myself R&R again when I clearly need a break. It’s better for my health and will make me a better worker and colleague. In lieu of traveling, Patrick and I are taking a staycation today through next Tuesday. My birthday falls in the middle, but even better than that is committing to six days of letting our wants and needs dictate how we spend our time. Patrick is studying for a licensing exam and I might do some deep house cleaning. Or, I might not. It has lifted my spirits in a way I didn’t expect to schedule this time off and decline to set any expectations for myself. It’s not really bereavement time, exactly, but it is definitely put-Emily-first time. Better late than never.

Going there

If I were so inclined, I could cry five or six times a day. But I am not inclined. What a mess I’d be. I make this claim, though, because my eyes threaten to generate tears in response to a variety of stimuli: a moving radio story, cute pet photos, news of a tragic death (human or pet, which may seem ridiculous, but it’s the truth), a positive human interaction that gives me a warm feeling, my own rambling thoughts about Mom. Etc. I always stop myself, though. I kind of feel like if I let myself cry, I won’t be able to stop … at least for a long while. So I don’t go there. As my brother Jeff so aptly put it when I threatened to cry when leaving New York City last fall after our sibling visit, I suppress (it’s helpful to visualize here the lowering of hands as if pressing down on something. In this case, emotions).

I think of this as a lasting element of grieving. But I suppose it also could be that I am a middle-aged woman whose hormones are playing tricks on her. I really don’t know.

I do know that thoughts of Mom drift in and out all day, every day. I recently told a friend/co-worker about the emergency department experience we had when Mom fell and needed stitches. (That was five years ago. Seems like yesterday.) We were talking about our experiences with various medical staff – in this case, their shortcomings. I remembered the doctor was confident Mom’s stitched-up wound would heal in a cosmetically satisfying way. And that the automatic blood pressure cuff scared Mom. I can laugh when I tell these stories and she did some funny things on that day. But then I fret about how scared she must have been. And how, that long ago, she could not understand instructions or make sense of the world around her. The doctor asked if her neck hurt and she replied, “Bonnie Caldwell.” That is funny. But I shudder to think about her physical pain that resulted from that fall, and her inability to tell us what hurt.

I began writing this post on Aug. 24. Since then, two anniversaries have passed: Aug. 27, 10 months since Mom died, and Aug. 28, what would have marked seven years since she moved into the Alz center. Facebook memories from Augusts past have been full of reminders of her transition from assisted living to standard nursing home, being kicked out, and her improved mood upon moving to the Alz center. And also last August, when we had a family staycation in Columbus, and we were all together with Mom – including her two granddaughters.

The bumpiness of this post is a good representation of how I feel these days: scatterbrained, fretful, wistful, grateful, sorrowful, joyful, grumpy, peaceful.

Mostly I just wanted to check in. Mom is still a big part of my life.

An ‘expert’ source

I revisited the caregiving life recently when I was interviewed for a blog post on OurParents.com titled “Preparing for Dementia.” A writer had found my blog and asked me to be a source for a story she was writing about moving a loved one into long-term care. I thought I’d be one of many people quoted, but I’m the only one. So various components of the story of Bonnie and Emily are sprinkled throughout an article otherwise offering some advice for people making decisions about long-term care for family members with dementia.

The interview was conducted via email, and my answers were lengthy. I like the quotes that the writer selected for her story. I felt some pangs of guilt over the references to Mom still driving after her Alzheimer’s diagnosis and then having an accident (in which no one was hurt) that abruptly ended her driving for good. But then again, what to do about driving is a classic dilemma for families dealing with Alzheimer’s, and maybe our experience could help convince someone to stop the driving before an accident happens.

The writer sent me a link to the story Monday. Today, I feel sort of melancholy. Coincidence? Possibly.

Even if it did make me a little blue, I was glad to do it. There is some joy in recalling that my experience with Mom was quite tolerable as far as these things go – a truth it took me some time to appreciate. The post covers the move to assisted living, and then to the Alz center, and how Mom made friends and adapted well to the changing environments. And I am always grateful for the chance to share my belief that moving a family member to a nursing home does not represent failure or selfishness. It can be better for everyone, including the patient.

These are the closing paragraphs:

“Bonnie Caldwell passed away in October 2015, and Emily considers it an honor and privilege to have seen her mom through her final years, from Assisted Living to Skilled Nursing care.

“‘Moving a loved one to long-term care is not betrayal, but a loving act,’ says Emily. ‘I had so many special moments with Mom, just holding her hand and taking a walk. She was childlike, and very sweet, and that’s how I remember her now.’”

Failure to launch

I think about this blog every day. I think about Mom every day. But thinking has not translated into action. For days and days, and weeks and weeks, and actually months, I have not written anything about Mom. Similarly, I didn’t do anything about Mom’s death once the memorial service was over and I returned to a new life, no longer a caregiver. I didn’t make a decision to ignore the things I needed to do. I’d call it a very serious case of avoidance: If I didn’t engage in tasks related to when Mom was alive or now that she had died, I wouldn’t have to consider how I felt about her being gone.

The activities director at the Alz center called me a few days after Mom died and asked what she should do with Mom’s belongings. They filled one bin and two garbage bags. She said she could donate them to other residents or to a local charity. I told her I wanted to see her things – mostly clothes, a few pairs of shoes, and miscellaneous trinkets that hadn’t been lifted by other residents in her seven years at the center – and then I’d return everything usable for other residents to have. Mom’s jewelry, some of her shoes, eyeglasses, stuffed animals and a variety of other items had disappeared over the years. Residents went “shopping” in others’ rooms – that’s how staff described it. (This was not theft, of course, but the result of confusion and memory loss.) So we were discouraged from having anything of value in Mom’s room. She had taken to wearing costume jewelry shortly before she moved to the Alz center from assisted living. And she was wearing glasses when she moved in. But those small and portable items went missing fairly quickly. I suspected that a replacement pair of glasses would disappear, too, or, worse, somehow cause Mom an injury. It was safer, really, to just let her go without.

I told the activities director I’d come in to get the items the following week. That would have been early November. On Feb. 8, accompanied by Patrick, I finally returned to the Alz center for the first time since Mom had died in late October. Her belongings were long gone, the staff member there at the time said, and that made perfect sense. And that means I didn’t have to go through them and think about what should go back to the residents and what didn’t merit keeping at all. Mom’s clothes were laundered so frequently that most of them were very worn. Not getting the chance to see her belongings caused me no anxiety, and potentially saved me from performing a sad task. But I did regret putting the center through the trouble. Meanwhile, I have many boxes of Mom’s belongings – mostly of sentimental value – in my basement. I haven’t gone through those, either.

While at the center, Patrick and I went to the skilled nursing section to have a short visit with Bobbi, who had led Mom’s nursing care in her last days. Bobbi put her hand on the counter and I put my hand on top of hers. “I just never came back,” I said. “It’s different for everybody,” she said. I didn’t have to explain a thing.

The same day, a Monday that Patrick and I both took off of work, we went to the funeral home to retrieve the urn containing Mom’s cremains. The director had called to ask me to take them home. After a certain amount of time, the funeral home has concerns about losing track of such things. And it really wasn’t their problem anymore. She didn’t say that, but there was no reason for the urn to stay there.

The urn is heavy. It is marble, a durable enough substance for burial. The plan is to bury the urn in a local cemetery. The funeral director had called the cemetery on behalf of my siblings and me to price out a plot. But I haven’t done anything to secure a burial site. To his credit, my brother Jeff, while in town for a music directing job, suggested we go to the cemetery to look at the possibilities. We found a stretch of a section that is open for the burial of cremated remains and stones flush to the ground. It’s a nice section with some trees. Mom liked trees. We’d like it if her final resting place could be near a tree, so we’ll see what we can do.

And then there was the bank account. I had joined Mom’s checking account about 10 years ago when she started showing signs of misunderstanding her finances. After I wrote a check for funeral costs that ran above the sum I had prepaid in 2009, the account had a balance of about $14. As the months passed and fees for a low balance were assessed, I got notices about the overdrawn account in my email. Finally, in late March, I went through the box of items from the funeral home to find a death certificate and went to the bank to close the account. The banker who helped me decided to waive some of the fees so I had to pay only $3.50 or so for letting the account become overdrawn – a kind gesture considering I had simply been negligent about closing the account. His wife’s grandmother had Alzheimer’s, he said. Maybe he took a little pity on me for that reason.

I’m kind of disgusted with myself for this behavior, this avoidance and neglect of my duties – especially since they were not really that daunting. The excuse I give myself is that I was on the hook for 10 years of caregiving, and the instant that responsibility went away, I shut down. Did things on my own time. Set my own deadlines. Had no Medicaid case worker or nurse or business manager to answer to. The thing is, the only thing that accomplished was punishing myself with more guilt. I guess I’ll never learn.

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