I recently asked a client with memory loss, “Who knows you best right now?” She was very aware of her journey through the early stages of dementia and we were trying to get her feet back under her. The pieces of her identity which were tied to managing the household, caring for her partner and keeping in touch with family were gone. She teared up a little and put her hand on her heart, “I’m not sure….” she said.
“Well, could I tell you who I see?….” I asked. She nodded and then I told her the pieces of her that stood out to me. She was talented at making conversations flow smoothly and recognizing when people were kind. Her sense of taste in clothing tended toward comfortable and outdoorsy with a love for wool. She had beautiful eyes that picked up on everything happening in the room. We talked about her always being a mother no matter what. I noted that her sense of humor was still very much intact and a lot of the pieces she had always managed alone she was now able to accept help with. Not easy things but she relaxed as we talked, as if she finally had something to hold onto again.
Memory loss, however, doesn’t happen in a vacuum. In the same way, her partner was also experiencing the loss and he admitted that his path included a great deal more anger and grief. His own disabilities took up a significant amount of mindspace and he said he’d been slow to realize she could no longer initiate the tasks she once did to keep their household afloat. In fact, he said, it was hard for him to even identify who she was if she wasn’t doing all the things she had once done….as if doing things, he recognized, was the only thing that makes us who we are. His grief centered on the person who knew him best now wandering aimlessly around the house. Their marriage hadn’t been perfect and he was struggling to figure out how to make things work when they both weren’t at their best and maybe never would be again. He thought the hardest part would be that she was unable to help him without guidance but the real difficulty, he said, was that he lost his favorite person to talk things over with and she could no longer spontaneously show affection.
Years ago now, the Area Agency on Aging that I worked for participated in a pilot study for a new model of “family caregiver support”. The gist of the program was to screen the primary care provider in a situation for burnout and then provide referrals to support the dyad.
We knew from our work as advocates that the role of caring for someone looked different in every single household. Some clients called us for a listening ear; others called to figure out how to pay for care. What was new in our experience was the pilot’s evaluation tool for assessing what kind of stress the person experienced in taking care of someone else. Four pages into the eval, however, a simple tally showed that people were feeling the stress or “burden” from providing care in at least one of four basic areas — financial, social, physical or emotional. It followed that we could provide resources to address these four areas and, if we provided resources that specifically addressed the kind of burden someone was feeling, the more likely that this support would be successful. Little did we realize that the organic work we were doing to advocate for clients could actually fit into a system.
Being a pilot program, the rules and reporting we adhered to were a bit clunky. We quickly learned how to enter the information so that the system would give us the referrals that we knew would help clients. One client told me that the only thing that really drove him bonkers about his wife having dementia was the physical task of having to change the sheets every day because she couldn’t remember to put absorbent briefs on at night. He scored high on the physical tasks of being a care partner being the most burdensome so we started looking for someone who could come to do laundry a few times a week.
Another woman who cared for her husband who had Parkinson’s carefully told us all of the pieces of her situation that made her frustrated but mostly that she couldn’t see her friends at water aerobics anymore. For her, the stress was related to the social side of things and giving up time to be with friends. As much as we talked about other supports, it was when we found someone to stay with her husband so she could go to the pool that she gained this piece of herself back which made all the difference in the world.
With the woman who needed to be reminded of who she still is, her husband finds the emotional tasks like having to initiate conversations and hugs to be the most taxing. He wonders how he’s going to be able to go on. I remind him that it takes courage to bring in someone like me when their relationship is being pushed to the max with loss after loss, that they both are feeling a little adrift at the moment and we need to find things to ground the emotional piece. Some distant flickering sense of self is not giving up even though they both think they can go no further. I mention that it takes a significant amount of confidence to be frustrated with a situation and not ready to try something new but perhaps we could talk about ideas to make day-to-day challenges more bearable. It comes to mind that these are ideas we all can use:
1. Find the notes — you don’t need a whole symphony. As a supervisor once told me, sometimes we need to find and acknowledge between us the good bits of life, the little things that are sweet, the pieces we can like about what has changed. When we feel like we’re starting from the lowest place, this is a more gentle way of reminding ourselves: what is one note or drop that is still good, that I still love about myself, about this person? We’re not talking about looking on the bright side, but giving our brains a chance to acknowledge what’s not lost for this does give us “fresh heart” to keep going.
2. Don’t let yourself miss the party. We all do this. We imagine that if that one thing (usually someone else) were different, we too would be a different person and be able to be happy. And then we obsess about everything that’s missing and wrong, as if this could make it better. Think of it this way….you finally get to the day of a party which you’ve been planning forever. All of your favorite people are there, your favorite food, your best playlist ever. Then you see a family member whom you really don’t like roll up. Who told her the party was today?! you think, and all of a sudden dealing with this uninvited guest becomes the whole focus….They are going to ruin the whole thing! So you think through your options. You can try locking the door but she’ll likely bang on it ‘til you notice her. (Not a good way to enjoy your party.) You can hold the door shut for a while while she yells and tries to get in…but, guess what?….then you’re standing at the door while the party continues without you in the kitchen. Finally you realize you have a third option which is to just let her in, acknowledge that she’s going to dominate the conversation sometimes, probably eat more than her fair share of snacks….but you’re not going to make her the center of attention and there’s no way in hell you’re going to let her be the reason you miss the party. And guess what?! your friends don’t want you to miss the party either. Letting ourselves overthink what’s missing in our situations is missing our own party.
3. Update your owner’s manual of you. When we go through things that change our relationship with ourselves and others, it’s easy to feel incongruent with who we are on the inside. Maybe we go through the motions but say things like, I just don’t know who I am anymore….For the client who felt lost because of early stage dementia, we needed to find a way to remind her of who she was, both as an individual and in coupledom with her husband. We decided she needed to update to her personal owner’s manual and installed a bulletin board in the main living area. Then we enlisted all the help of those close to her to make lists and find pictures of anything that reminded us of her. With help, she made a list of “Things I’m Really Good At” like deadheading the flowers, not leaving the stove on (a dig at her husband’s expectations of dementia) and (she said brightly) losing things! We listed “Important Themes in my Life” like trusting God and praying, always learning, and having a beautiful living space. Part of her “owner’s manual” came to display her artwork after she took up coloring to calm her mind. The husband started leaving her notes to watch her read them even when she couldn’t remember to hug him anymore — a sweet moment he needed in order to feel connected still. The bulletin board became their little window into seeing all the unique pieces that made her her and them them, convincing me that everyone needs an owner’s manual like this.
In her book, Counting on Kindness, Wendy Lustbader beautifully describes the dynamics that go on when we lose pieces of our health and must depend on others to help us. “Fresh heart” is what she calls it when we can focus on what is there now and how it balances what is not, even when it’s something we never wanted or hoped for. And she rightly calls it courageous to see what is in front of us, saying, “The word courage comes from the Latin cor for heart. We give ourselves fresh heart by pulling our attention away from what has been lost.”
Finding ways to stay visible when our identity is shaken and remembering who we are, bit by bit…taking note of what is still there in a world that tends to hide any kind of loss — it’s making sure we don’t miss the party when the party is ourselves.