Wednesday, October 2, 2013

Alzheimer's Association Caregivers Conference.

Last week I spoke at a Caregivers Conference for the Alzheimer's Association. I hope to write more about my experience another time but for now I just wanted to post what I wrote in case anyone else would like to read it (and because I promised my cousin I would...).

Several months ago, when I was asked to speak here today, my initial thought was, "Um...thanks but no thanks." I was flattered but just didn't see any reason to add something new (and challenging!) to my plate. I'm a busy homeschooler with two boys, a husband who travels for work, a full social calendar and, on top of all that, my mom has Alzheimer's. Throwing something else into the mix just didn't make sense.

Plus, nobody panic but... I'm not actually a speaker. I'm a writer. I figured this was more than enough to get me off the hook so I ran it past my seven year old thinking he would totally have my back. Instead he just kind of looked at me and said, "Mama. Seriously? If you can write and you can read, don't you think you can 'speak'?" I don't know if you've ever gotten air quotes from a seven year old before but I can tell you from experience, it means business.

Since I really do try to practice what I preach - at least most of the time - I knew I was going to have to say yes. So I did. Obviously. But I still felt hesitant. How can I call myself a caregiver when my parents and I don't even live in the same state?

My mom was diagnosed with early onset Alzheimer's about four years ago, just before her 62nd birthday. It didn't exactly come as a surprise - we all knew something was wrong - but the diagnosis still hit like a ton of bricks.

The journey started long before we had ever heard the dreaded A-word. It's hard to say how long but I know we were all worried about her memory for quite some time. At least my sister and I were. I'm pretty sure my parents thought we were just being dramatic. Losing your mind is just one of the many joys of getting older, girls. We're FINE. What's the big deal...

But to us it felt like a really big deal. We even went so far as to check my mom into the hospital after a random fainting spell at my sister's bridal shower. She was perfectly fine and we knew it - mimosas on an empty stomach are never a good idea - but it was like we finally had a legitimate reason to get her in front of a medical professional and weren't about to miss our chance. I swear, my mom hadn't so much as hit the floor and my sister and I were already looking at each other with raised eyebrows like, "You thinking what I'm thinking..." We totally went rogue.

The doctor on call diagnosed my mom with depression, which he said can sometimes look like dementia in older people. We were so relieved.

Depression felt manageable; Alzheimer's did not.

Fast forward about a year. There hadn't been any noticeable improvement in my mom's memory but I didn't think she seemed to be getting much worse. Of course, I was in Nashville while she was all the way across the country with my dad. My sister, who lived near my parents at the time, was definitely concerned. Every time we talked it was doom and gloom. My dad said not to worry. I chose to listen to my dad.

Then my parents changed insurance and my mom had to see a new primary care specialist. She went in for a routine visit, sort of a meet the doctor type appointment, and within 20 minutes she had been diagnosed with early onset Alzheimer's disease and had her driver's license taken away.

Like I said: ton of bricks.

Of course, since then, it's been a bit of a roller coaster. My mom's been diagnosed, un-diagnosed and re-diagnosed. She's been on Aricept, done crossword puzzles and even bought some coconut oil. She earned her license back from the DMV only to have it taken away again by my dad a few months later. She's been completely blank one moment and perfectly lucid the next.

When I think about the fact that it's been four years since she was first diagnosed, it's hard to wrap my brain around. On the one hand it seems like a lifetime. Because four years ago, my youngest son hadn't even been born. I hadn't written or illustrated any children's books yet. Our old dog was still alive.

Four years ago my sister was in college, living near my parents - now she's a working mother and lives with her husband and son in Louisville.

Four years ago my mom was able to fly to Nashville for Thanksgiving. Now she doesn't even know who I am.

When I think about it like that - about how much she's changed, about how much everything has changed, it's impossible to imagine how it all happened so fast.

When my family started on this journey, I thought I knew a lot more about caregiving that I actually did.

There were primary caregivers, of course, like my dad, who did all the day-to-day stuff. Like cooking, grocery shopping, doctor's appointments...all the stuff the person with Alzheimer's can no longer do on their own.

I figured my role as a long-distance secondary caregiver would be to swoop in a few times a year and just kind of take over for a while. I'd probably take my mom to get a pedicure or have her hair done so my dad could have a break. So what if we'd never gotten a pedicure together EVER in our lives - this was prime mother/daughter date time! I'd make a whole bunch of healthy meals and stock the freezer, clean the house, then say goodbye and return to my life back home where I would obviously be kept in the loop and all of my opinions and suggestions would be seriously considered if not immediately implemented.

In reality? It's nothing like that. Turns out, my dad is completely uncomfortable with me doing any of that stuff. He's still very much the dad and I'm the kid. My parents don't actually want me and my sister - or anyone - to be that involved. Especially at the beginning we were on a need-to-know basis. And as far as they could tell the only thing we needed to know was that everything was fineWe're good. Things are good. No need to worry about us. How are the kids...

At first this was really hard. We couldn't believe they weren't telling us everything. Didn't they value our input? How were we supposed to help our mom if we didn't know what was going on? What about planning for the future? I mean, if I was going to have to move my whole family across the country to take care of my mom, shouldn't I get a little head's up?

The unknowns were really stressful. Since we didn't know what else to do, my sister and I spent a lot of time being angry. Angry that nothing was done sooner. Angry that more wasn't being done now. Angry that we weren't in charge. We were angry at my dad, my mom, Alzheimer's, you name it. Looking back, I guess we thought if we had more control, everything would be better. Of course we all know that wasn't true. But we had no idea what else to do.

As time passed and my mom got worse, I realized the anger wasn't helping anyone. It was only making things worse. The situation was going to be the same whether or not I was upset about it. If my dad didn't want my help, I couldn't strong-arm him into taking it. And, besides - there really wasn't anything I could do. At least not to make my mom healthy again.

I had to face the facts: my mom was sick, my dad was in charge and there wasn't anything I could do about either of those things. What it really boiled down to was this: did I want to square off against my parents in a fight none of us could win or take another look at the situation and figure out what I could do?

I stopped pushing and accepted the situation. Instead of judging my dad for not doing a better job - which is so easy to do when you're not in the driver's seat - I started to appreciate him for stepping up and doing the best he could. Being a primary caregiver is a HUGE responsibility. I'm so thankful for my dad and have tons of respect for anyone else who has stepped into this role.

I was at a homeschool playgroup the other day, talking to some of the other moms about all of this, just kind of getting some support, and I said something like, "I honestly don't know how my dad does it. Day in, day out, every single day. I really can't imagine." One of my friends said, "You know, that's probably what people think about us..."

I had to laugh. I'm sure she's right! It was such a simple moment but something I really needed to hear.  I know that there are lots of great ways to raise kids. As a parent, it's your job to figure out what works for you. What works for your family. If you have more than one child, what works for each individual person. I think caregiving is very much the same. There's no right way. You just do what needs to be done and when that changes, you figure it out.

Now, instead of feeling frustrated that my dad won't let me make a healthy dinner, I just have a beer with him on the porch and we talk about what books we're reading. If he let's me take my mom for a walk or on an outing with the kids, I do it. If he won't, I let it go. When I'm here and he's there, I call him up just to talk. Not about my mom - unless he wants to - just about whatever. It may not look a lot like caregiving, but in our situation, it's something helpful I can do.

The last time I was visiting, we were hanging out on the porch when his neighbor stopped by. She was trying to convince him to go to a caregiver's support group and told us that when she started taking care of her dad she had to go to therapy just be be able to say, "Look Dad. I know it's weird but I'm in charge now..."

We were keeping it light but also just kind of shaking our heads at how overwhelming the whole thing is. My dad and I kind of locked eyes and I said, "Don't look at me! I don't have any more answers than you do. I mean, I'm supposed to speak at a caregiver's conference and I have NO IDEA what I'm supposed to say." It felt like a little bit of a risky move - I didn't know if my dad was going to be upset that I was sharing our stories with strangers - but it just kind of came out.

Without missing a beat he said, "You know what you should say? Tell em that when you were younger, heck, even two years ago, you would have never guessed you'd be homeschooling. But here you are, doing it. That's just how life works sometimes. You find yourself in situations you didn't expect and you don't have to think about what you should do, you just do it. You rise to the occasion. Just tell em that. You'll be fine..."

So there you go.

He's completely right, of course. There's no secret to why we do what we do. It's just part of being human. And how we do what we do? I guess it depends on the day...

Some days are easy while others are anything but. With a progressive disease like Alzheimer's, the only thing we really know is that it will always be changing. There's no way to win at something like this. We have to just find a way to roll with it. To show up day after day and do whatever it is that needs doing.

And when we don't know? It's okay! There are so many people who have been there, done that - we really don't have to reinvent the wheel. Sometimes all we have to do is say okay. Oh, there's a free conference for caregivers with lots of great resources and respite care? Okay! There's no reason to make this harder than it already is.

Any questions you may have or resources you need to get connected to, I'm guessing you can find it here today. Even if it's not an expert by trade that you need but an expert by experience. Someone who just GETS IT. Someone you can call when your mom puts blue fingernail polish on her lips waiting in line at Walgreen's who will be able to laugh and let you laugh and neither of you will have to feel like a jerk. Whatever kind of support you need - being here today feels like a really good step.

Thank you for letting me share my story. It's probably in some ways just like yours and in other ways, completely different. This isn't a one size fits all situation; this is life. These are our loved ones. This is my mom. No one can tell us exactly how to be a caregiver. But if we're open and loving and willing to do what needs to be done, there's more than enough support to help us get through it. All of our situations will be unique but none of us has to do this alone.


Anonymous said...

Maggie I am so proud of you and your mature attitude towards learning as much as you can about the disabilities associated with Alzheimers. No one can understand this horrible disease, needing much more research,unless their family is directly affected. A book written some years ago, "The 24 Hour Day" was helpful for family members to grasp the difficult job the caregiver experiences daily. I will get it and review it so maybe I can be of help in the coming months. You are a special individual....Lucky me!!!!!

David Tal said...

This article is very helpful information about Alzheimer's and related dementia, and resources for people with Alzheimer's as well as their caregivers and loved ones.

Dementia specialist