This post is by and for primary and secondary caregivers of someone living with mid-stage Alzheimer’s disease.

We’ve been living with mom’s Alzheimer’s disease for almost 9 years now. I can’t believe she’s still with us. Still knows us. Laughs with us. Helps where she can (teaching, for example, of the extraordinary joy to be found in folding warm, just-out-of-the-dryer laundry). We are so lucky. These days I occasionally receive questions from other caregivers and family members living with this disease too. I’ve decided to blog my answers here, as questions come up, to save time. Here’s the first one–actually four that are variations on a theme.

Question: 

How do I make my other family members:

• help my family member with Alzheimer’s disease?
• help me?
• do their fair share?
• offer better/very different support than they’re offering now?

My answer:

You don’t. You don’t have the time and energy to bother with trying to make other people do things. Welcome aboard the S.S. That Ship Has Sailed. I used to think I could make other people do things. That me spent hours, days, and, in some cases, years, trying and failing miserably at this. That’s not me anymore. Thank you, Alzheimer’s.

Try this instead. It actually works. Plus, it gives you precious time instead of taking it.

1. drop old expectations. If it helps, write them down on paper, crinkle that paper into a ball, and drop it on the ground. Step on it for good measure. Or toss it in the fireplace.

2. begin to surround yourself with people (and things) who are more naturally really good at helping you. For example, the friends who’ve been caregivers before, other caregivers online, social organizations that get it, neighbors who get it, books, blogs, dogs, cats, children, playful adults, trees, birds, sunbeams, local support groups, and professional help. Look at all the people/creatures/beings who can actually help!

3. let go, for now, of the people who drain your much needed, very precious, caregiver energy. This includes the old you. Say a fond farewell to them and to the you who thought she could make other people do things, failed, got disappointed, got angry, and then got tired. It was so strange. That day. The day I realized that mom’s disease wasn’t making me tired. My own expectations, anger, and disappointment–in myself and other family members–was. Most days.

4. use the time you receive wisely. Your heart knows what you need. What feels good? Rage? Rest? Reflection? Re-find you. Utterly surround yourself with you-centered energy creators. This might mean new people, fewer people, new things, and/or fewer things around you. Let your heart be your doorman. Your bouncer. People allowed in your door now are those who you create energy with. You literally feel your heart lighten up when you see them. Get over what you SHOULD be doing. The people who actually light up your heart are your people now. Find them. Stick with them. Or be your most-honest, true, vulnerable self, and they’ll find you.

Our story:

In the early stages, for years, we tried keeping the whole extended family together, across thousands of miles in some cases. We’d been a close-knit loving family of 40ish sweet, gentle, and conflict-adverse mid-westerners. By mid stage, however, the care requirements for both mom Linda and for failing-health-primary-caregiver-dad Jim, grew time-consuming enough that we failed at extended family communication. We had to become ok with a rift in the extended family. Dad snapped, turned on some family members, and some relationships shattered.

Here at mid stage, for us to thrive, it takes three groups of people:

1. The A team. The 10ish-member caregiver improvisation troupe, willing to laugh together, work together and love each other no matter what. We call ourselves Team Jinda. Professional caregiving help has joined the team too.

2. The B team. The 20+-member love-from-a-distance team, the family who still loves us and checks in with us via Skype and by sending words of encouragement now and then. They boost our spirits from time to time in person and also when we think about them. They are providing support to both the A team and the C team now, so they, too, have their hands full.

3. The C team. The 10ish-member has-to-move-away-for-now team. These friends and relatives have enough heartache and worries of their own that they can’t handle us as we are right now and/or we can’t handle them. They have their hands full too. We love them and don’t blame them. And the A team had to break contact with them to focus on caregiving and keeping caregivers strong. Fortunately for us, a member of our C team loved us so much that she broke ties with us first, in a most loving way, at great personal cost to herself. Taught us that it is ok to do the same. This break freed us, and we are so grateful.

The year leading up to the break–trying to keep all 40+ family members together and communicating the way we used to be–was horrible. Horrible. Lawyers and judges became involved. Hearts shattered. But since the break, we are lighter. We have so much more time. Our hearts are being healed by different people now. People who can listen to us without being hurt by us. And we find ourselves with the time again to be ourselves, finally, and to wish the same healing for the C team.

Nothing prepared us for this reality. We were lied to by a voice in our heads (our culture? our own fear?) that told us we should be able to keep everyone together and that everyone should care equally and should contribute in similar ways or how we want them to contribute or in the exact same ways that they used to. That our wise, beloved father should be strong enough not to turn his fear and heartbreak on others.

To that voice of fear in our heads, we now say “Bullshit.” We have no time for shoulds. I learned that it’s perfectly ok, fabulous even, to let some people go for now. Some people offer us more by leaving, so we can focus where we need to. And we offer more to them by leaving, too.

Our small caregiver team can be more flexible, more free. We have to adapt to new realities daily now, sometimes hourly, sometimes by the minute. Much easier to do this as a lean, mean, caregiving machine.

Sometimes the most loving choice you’re left with is to let go of someone before anger hardens into contempt within you. If you are part of an Alz A team, or a lone caregiver without your A team yet, you literally don’t have time for contempt anymore. How cool is that? And if you’re really lucky, and you accept the break, you gain time to find new support.

It’s possible to love people with your whole being and still say “Not my circus. Not my monkeys.” I love my C team members more now than ever and know that one day, after my parents pass, we will find and hug each other again. On the other hand, mom and dad have shut the door, likely for good, on the C team. It’s all they can do. It is what it is.

From my perspective, our A and C teams let go of each other several months ago now. In hindsight, I wish we hadn’t waited so long. I wish we hadn’t hung on to old hopes and expectations as long as we did. We could have saved ourselves a year of inadvertently being hurting each other. We could have opened this new time, this new rest, this new energy, for ourselves and our parents sooner. Found new companions and new help sooner. And began healing, sooner, too. After the break, life is still hard, but suddenly, life is sweet again.

Here at the center of the fire.
Here where we live out our worst fears, year after year, and cannot look away.
Here on Team Jinda, life is beautiful.