Dear Friends:

Wanted to share these comments I made at a recent church service on caregiving. I’d love to hear from you about any experiences or concerns you have in connection with caregiving.

Here goes:

A few years ago, a small group of us sat in a circle at church doing some New Year’s sharing. I talked about how my stepmom was experiencing a lot of memory loss. I was not only constantly worried about her, but I was also grieving. Slivers of my then 91-year old mother were disappearing. Although she was very much alive, I mourned the loss of this fearsomely bright, endlessly energetic woman who for decades had finished her Christmas shopping by October and never encountered a Sunday New York Times crossword puzzle she couldn’t figure out.

Afterward, a friend came up to me and said, “You really need to drop by our monthly caregiver’s support group.”

“But I’m not a caregiver,” I said.

“You’re a long distance caregiver.”

And so I went, even though I felt like an imposter, sitting and talking with amazing folks, many of whom were caring fulltime for loved ones who were no longer the same people they’d been raised by or married to. It really was helpful to share our experiences and feelings, and know that we were not alone.

But still, I think one of the emotions long distance caregivers like myself deal with is guilt. It’s not that I’ve checked out on my mom. I call her every day. And I make several trips a year to Boston where she now lives in assisted living.

But I feel guilty anyway. I’m not there. In these last few years, there’s never been a phone conversation when my mom doesn’t say, “I miss you. When are you coming?” Sometimes, I’ve been there the day before and have barely stepped off the plane when she says this. She has no memory that I’ve just been there. But I tell myself that at least so far, I’m fortunate because she still knows who I am, and that she likes having me around.

Dementia is a progressive disease. At first, my sisters and I noticed that our mom would repeat herself, seemingly not remembering what we’d just spoken about. Then there were the changes in mood and the sudden outbursts and paranoia. Someone was stealing her things, she insisted. We’d call up and she’d be crying—lonely and depressed.

She’d always been fiercely independent and stubborn—and now was only more so. We didn’t know what to do. We were worried that she was still driving and refused to have anyone come in to help her, let alone consider assisted living.

Finally, we decided to stage an intervention. My two sisters and I descended upon her for a visit and begged her to have someone come in a few days a week to help her. She adamantly refused and became furious with us, insisting there was no problem.

It was my brilliant physician niece who came up with the idea of getting my mother help surreptitiously. She arranged to have the aide of one of my mother’s friends drop by to see my mother, along with the aide’s dear friend, Tina. Tina began dropping by several times a week and doing things with and for my mother. My mom truly believed that Tina was a friendly person who just liked doing nice things for other people.

Fortunately, Tina, who really is a lovely person as well as a professional caregiver, was with my mom when she had a perforated ulcer and underwent emergency surgery. After that, there was 30 days of rehab, and then my mom agreed that the time had come to move to Boston where a huge chunk of our extended family lives. I spent three and a half weeks in Connecticut dividing time between the rehab hospital and cleaning out my mom’s condo with my oldest sister. Then my other sister flew in, and we drove my mom to Boston and helped her move in.

I wish I could say everything is fine now, but my mom still misses her old life. Time is very fluid for her. She frequently announces that she’s had to give up her car, as though this is new news. Giving up driving “is like having your legs cut off,” she’ll lament. I’ve realized that the car is a metaphor for all the losses she’s experienced: her independence, her sense of competence, her whole identity as this amazing whipper-snapper who could go anywhere and do anything she set her mind to.

That person is gone, but I cling to the pieces of her that are left, including her sense of humor.  When she complains about having no memory, she still laughs when her great-granddaughter reassures her that “It’s just your forgettery,” or when I tell her, “Not to worry. I’ve ordered a new memory from Amazon. It will be here any day.”

Glimmers and glimpses of the amazing woman she was are still there. And I feel very blessed to have had so many decades of loving, and being loved, by my mom.