Battling the Caregiver Blues (or How Not to Drown)

shelley winters swim

We had a terrific storm last week. When I came downstairs the next morning and saw the sun trying to peek out from behind the clouds, guess what song popped into my head? That’s right: “The Morning After,” the theme song from The Poseidon Adventure.

Then I thought of Shelley Winters swimming underwater. Happens every time. You say “Poseidon Adventure” or play that song (usually the grocery store is the culprit), and I think “Shelley Winters underwater.”

It’s a perfect image for what the past week has felt like: days on end underwater. Not literally – I’m talking about that feeling you get when you can’t shake the blues. When depression feels like a wearable garment you’d like to take off, but can’t.

Dementia sucks. Sometimes the sadness just overwhelms you. I could stop right there and you’d know what I mean. But it might be more useful to talk about how to survive the caregiving blues, otherwise known as how not to drown.

When you read articles on drowning prevention, they all include tips like “put a fence around the pool,” or “avoid dangerous water.” Well, we can’t fence off dementia and we can’t avoid caregiving, but we can learn how to survive the depression that inevitably comes with it.

If you consider the constant stress, fear and uncertainty we live with as caregivers, it’s easy to understand why depression is a common issue. In “7 Depression Busters for Caregivers,” Therese J. Borchard states that approximately one-third of us suffer from depression and anxiety. Based on my research, that’s almost three million of us!

When you feel overwhelmed by caregiving, and depression and anxiety strike in force, what do you do? How do you keep from drowning?

1. Learn to Swim

Right? I mean, that is the most obvious and practical advice. In our dementia caregiving world, that means studying the disease.

Fear of the unknown takes me under every time. I find it much easier to cope if I know what’s coming, instead of just guessing what’s coming. My guesses are usually worse than reality, which creates undue stress, which leads to helplessness and depression.

I’ve become a student of the disease, and it’s helped alleviate my fears. My favorite expert resources are: Teepa Snow (her YouTube videos are fantastic); The Best Friends Approach to Alzheimer’s Care; and The Alzheimer’s Association.

When I read about the stages of dementia, I can better understand why my mom is behaving a certain way. I can learn what’s coming, so I’m not shocked when changes take place.

I remember thinking when Mom was diagnosed that she would never get aggressive or angry like some dementia patients.  That just wasn’t her personality. But I kept reading about how frustrating it was to have dementia, and how that translated many times into angry outbursts or aggression.

The first time Mom behaved that way towards me, I was trying my best to convince her we needed to participate in an activity with the rest of the memory care group. We were midway down the hall and I was cheerfully explaining how much fun it would be when Mom turned to me, grabbed my arm and screeched “I DON’T WANT TO GO!”

I had already read how it was best not to react to those outbursts, but instead to calmly validate their feelings and just let it go. So even though inside I was beyond shocked and a bit frightened, I somehow remained composed and said, “ok, let’s just go back to your room and talk.” She instantly relaxed.

Now that she’s in the later stages of dementia, many changes are taking place, but I knew they were coming. She sleeps more, has trouble swallowing, and communicates far less. I hate this, but I understand it. It’s how dementia affects her brain, and it’s a textbook description of dementia’s final stages.

2. Use the Buddy System

If you’re swimming in rough waters, it’s best to take a buddy along, just in case. Even if you’re swimming laps in your backyard pool, it’s nice to have someone else there to cheer you on.

Caregiving can’t be done in a vacuum. It’s too stressful, too demanding, and far too sad to handle alone. We need to talk to others. We need to be nurtured, consoled, and encouraged. Sometimes we just need someone to listen.

Support groups work for a reason. They’re a place to vent, to ask for advice, and to get help. They’re full of folks in identical situations, or those who’ve already experienced what we’re experiencing, and who can offer invaluable advice. Keeping all the anger, fear, frustration and grief inside is a recipe for depression disaster.

In the past weeks, I’ve really been struggling with grief. I see my mom declining so fast now, and it terrifies me. I had to do something to break out of the depression I was in, so I talked to my friends.

Many of them have already lost their parents, and many of them lost parents to dementia. Other friends have lost spouses to cancer; so they, too, have endured the slow disappearance of their loved one.

I asked them how they survived, and was flooded with love and incredibly wise advice. More importantly, I let them know I was in trouble, and they came to my rescue. They held my head above the waves until I could catch my breath.

They gave me hugs and told me they were here for me. They checked in on me frequently by text, email or phone, just to let me know they were thinking about me. They made me laugh; they fed me dinner; they made me exercise.

While community can’t take away our pain, it sure can help lessen it. It’s our life jacket.

3.  Float on Your Back

When all else fails, flip over and float on your back. Dog paddle. Tread water.

There are times when the reality of your situation will hit you so hard, you just have to survive until you feel better. Do whatever it takes.

Loving someone with dementia brings grief and loss in many stages over many years. It’s exhausting. Every time I get to a point of acceptance at one level, it seems Mom gets worse. Then I have to start the slow acceptance process all over again. Unfortunately, that’s the nature of the beast, which I’ve had to accept as well.

Reaching a new level of acceptance these past few weeks wiped me out. That’s ok. I’ve been resting A LOT.

I’ve spent lots of time being quiet, trying to connect with a Power Greater Than Myself. (I call that power God. Anne Lamott calls it Phil. You may call it whatever you like: Jehovah, Goddess, Wind, Door Knob.) I’ve asked for help, strength and faith.

I’ve read countless articles from the folks that minister to dementia caregivers. I can say quite literally I don’t know what I’d do without the vast dementia community out there. Websites (and their respective Facebook pages) like The Alzheimer’s Reading Room, The Long & Winding Road…An Alzheimer’s Journey & Beyond, Alzheimer’s & Dementia Weekly and The Caregiver Space have helped me get through each day.

An amazing memoir, Inside the Dementia Epidemic, helped me not only know I’m not alone, but also gave me incredible caretaking advice.

And I’ve watched squirrels dancing to Michael Jackson. Ludicrous, hilarious silliness. As Erma Bombeck once said, “He who laughs … lasts.”

Loving someone with dementia is not for sissies. But it doesn’t have to take us under. Learn to swim, use the buddy system, and when all else fails, float. Stay brave, and keep your head above water!

 

 

Carol Fant