Eight Beautiful Lessons from Late-Stage Alzheimer’s Care Partnering

by lori | Jul 7, 2016 | Acceptance, Alzheimer's, Essays, Grace, Story

For the past three months, I’ve been an almost daily care partner for our mom, who is moving into late-stage Alzheimer’s disease. Our family has been living with the disease for a decade now. Dad has been caregiving for mom, mostly on his own, for more than a decade (because he saw the disease long before the rest of us did). I am utterly amazed by what he has done. For the past seven weeks, I was with them 24×7 as we travelled across the country and then prepared and sold their home, boat, and trailers. I finally—fully—saw what a toll this is now taking on my dad. I wish that I’d spent this intensive time with them sooner, because there are things I wish I could have helped him do for himself years ago. That said, how about I drop the guilt and just share the beautiful things I’ve learned this month?

1. Scheduling a weekly meeting or call with others like you

Care partners need a place to vent. We need a place where people can completely relate to what we’re going through with insider knowledge, a willingness to listen, and without judgement. We need a safe place to weep. A place to tell our stories of the adventures of Alzheimer’s: many of which are remarkable and amazing and some of which hurt far beyond what we think we can handle. We need this. Period. I don’t care what you have to do. Make this happen.

2. Saying “Yes!” when loved ones freely offer gifts

I learned to do this only this year. Now I see why it took me so long. To this day, as a caregiver, my dad’s go-to response to offers of gifts and help is to say either “You didn’t have to do that.” or “You shouldn’t have done that.” or “No, I’ll do that.” or, my least favorite, “You can’t do that.” (The hell I can’t buddy!) This is not the voice of the man who raised us: the man who accepted our gifts and allowed us to help do everything as kids (as the imperfectly stained fence can still attest). I empathize with wanting things done a certain way: especially in the face of a chaos-generating disease like Alzheimer’s and when your priority is protecting a family member who needs significant quiet, order, and a reliable schedule to reduce the load on their always over-worked brain. And still, from my perspective, learning to say “Yes!” to others, when gifts are offered freely and in love, is among the deepest gifts that attend this disease. Mom is the QUEEN of this. She’s a rock star. To survive as a long-term caregiver, and to thrive as a family, caregivers and care partners also have to become really good at receiving gifts and help.

3. Letting go of people unable to give you the benefit of the doubt right now

The effort required by Alzheimer’s caregivers (especially those who struggle with receiving help) is so intense that I compare it to being caught in the gravitational pull of a black hole. There is no getting away. No down time. All your energy must be directed inward to yourself, immediate-other care partners, and the person with Alzheimer’s. And this can go on for years. This means that you become a very different friend, family member, neighbor, citizen, employee, manager, worker, playmate, life partner, spouse, sibling, gardener, and human being than you used to be.

Your ability to people please, and even to work out small differences, outside your immediate small circle all but vanishes. Communication to the outside world, for example, becomes difficult and often impossible. This can hurt people around you who consider themselves part of your inner circle but who, for a while, must—for your sake—be pushed outside that circle. Some people will turn on you for doing this. Dislike you. Even hate you. They will ascribe the changes in you to all sorts of interesting things—from selfishness to stubbornness to flawed character to greed to arrogance to indifference to not really listening to them. It’s funny. People with ample free time can do a great job at fooling themselves into believing that they can judge, fix, and change other people. We can’t. We cannot suffer these same delusions: we simply don’t have the time and spare energy. Instead, we must let people go. In our case, we’ve let go of a whole lot of people across the last decade. It hurts, I’ve learned, only as long as you fight it. Only as long as you beat yourself up about being unable to fix things that you cannot change. Those who matter to your future will accept you as you are even now, they will either forgive you or see that you don’t need forgiveness, and—I’m learning now—they will find their way back to you eventually. Those who fiercely hang on to you do come back. Those who fiercely hang on to judging, blaming, or trying to change you are most likely gone from your life for good. This hurts. And yet this, too, is a blessing.

4. Recognizing that your pain is their pain

Many people—our mom included—experience a significant increase in empathy living with Alzheimer’s disease year after year. For my mom, at this point, living with the disease doesn’t appear to be the hard part. She accepts all the things she can no longer do. Including, at this point, speaking no more than one or two words at a time. She graciously accepts gifts. Gratefully allows us to help. Loves life most days. The same has become true for me, most days. Right now the hard part for her—and for me and my sister Jen—is watching my dad try to do everything himself, rush, exhaust himself, get frustrated, get angry, and beat himself up emotionally and physically about his own mistakes and completely normal exhaustion-generated human lapses in memory and judgement. When dad is happy, mom is happy. When he hurts, she hurts. When I am happy, Jen is happy. When I hurt, she hurts. Prioritizing ourselves, our health, and our well-being as caregivers and care partners IS how we best serve our loved ones. Neglecting ourselves and our needs hurts not just us: it hurts everyone connected to us.

5. Dropping guilt

Guilt is you carrying a kayak across the desert. You may have needed it in the past for something, true. And you don’t need it anymore. Your family doesn’t need it. Your community doesn’t need it. Certainly the person with Alzheimer’s doesn’t need it. Your guilt is not needed here, care partner. It is unnecessary weight. Let it go. And if you can’t, connect with places, people, and things who help…

6. Opening to nature

What we need in our lives now is more time with people, things, and places that allow us to just be who we are right now, feeling what we feel, as messy as we really are, and that/who show up without a deep need for reciprocity, fairness, correctness, and perfection. We humans may not be great at doing this, but we do at least instinctively turn to nature for help. Here is a partial list of things that are better at allowing us to just be ourselves than most humans are. Increase your contact with one or more of the following things: trees, flowers, dogs, cats, deer, fish, grass, vegetables, fruits, sky, clouds, sunshine, rain, lakes, rivers, oceans, forests, fields, moss, tree stumps, sunsets, sunrises, beaches, rocks, driftwood, soil, seashells, fog, mist, wind, leaves, meadows, birds, music, poetry, art, babies, and puddles. Also, increase your time in spaces that make you feel welcome (from an inviting sunbeam to a soft chair to a neighbor’s front porch). Spend more time in places that make you feel grounded, relaxed, needed, and home (from the presence of a dear friend or sibling to a street or park or forest that you love).

7. Opening to new community

My folks have done a great job of this the last few years, and I think it saved us all a great deal of pain. Open to becoming friends with new people. Different neighbors. Other caregivers who appear to have literally nothing else in common with you beyond caregiving. Talk to random people in stores and restaurants. To friends of friends online (or even strangers if you’re up for it). Delivery people. People in doctors’ offices. People of different ages and energy levels and cultures and backgrounds and previously imagined societal levels. Find authors and characters you’ve never encountered before. People and animals outside your comfort zone. It is these people—this new community—that is integral in helping you survive and thrive as a care partner and as a family. You need them. They save you. And unlike the old you—trapped by old beliefs and ways of thinking—this time you’ll be more fully aware of the fact that these strangers, these new-to-you friends, are saving your life. Co-creating your life. You’ll be more fully grateful for it this time. And, remarkably, in your own gratitude and openness to new community, you will save them in return. Without even trying…

8. Experiencing everyone as a leader

When she’s well rested and feeling supported, our mom makes friends with everyone and everything she meets now. Without even trying. Most days, she couldn’t care less about your size or shape or past or abilities or flaws or political affiliation or gender or age or orientation or beliefs or IQ or planet of origin. In her presence, you are beautiful and perfect as is. If you slow down, and join her in being fully present, it’s easy to see the same in her.

Last week, for example, in the middle of a large family gathering, she left the room for a while and then walked back into the middle of the kitchen wearing only her swimsuit and shoes. She stood smiling at us, waiting patiently, until we offered to join her in the lake. And then we did. And then it was wonderful.

Does it really matter that she can no longer say “I’d like to go swimming now. Will you join me?” Does it really matter that she no longer knows what state we’re in? Or our names? Or her own last name? Mom has become a better leader every year of her life with Alzheimer’s, because she sees everyone around her as a leader too. She is such an amazing gift. In her presence now, we are all leaders. We are all gifts. And we are all helping.

Sympathy is the standard response I receive when I say that our mom has Alzheimer’s disease. If only the world knew how incredibly lucky we really are.