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Posts Tagged ‘caregiver depression’

Do more people die around the holidays? Yes, sadly they do–at least hospice numbers reflect a rise in deaths during the holiday season.

Some factors are obvious–flu, depression, car accidents to name a few. It’s hard on families–to have a loved one on the brink of death during what’s supposed to be a joyous time of year. Caregivers are torn between exhaustion and sometimes feel a tinge of relief after a long bout with cancer or heart disease. It’s hard to face the holidays while you’re grieving–and grieving starts long before your loved one dies.

A dear friend of mine worries if her dad will make it through this Christmas. Everything seems bitter-sweet. Her mom died near the holidays as well, and she misses her each year when she’s decorating the tree–something they used to do together. “I try to enjoy the season, but it’s hard. Hospice is coming three times a week–and we all know it won’t be long now.”

Perhaps the hardest thing to face is a new death. Recently, I met a woman at a care conference who just lost her son to AIDS. It’s only been two weeks, and she looked completely depleted–physically and emotionally. She says she doesn’t want a tree–she couldn’t stand to look at one. I told her I understood. It’s okay to “skip Christmas.”

Grief may get notched up a bit during the holidays. It may be that someone you love died during this time of year (even long ago) and your body has a “muscle memory” of that time in your life. You may not have verbalized it, but then it hits you-and it all makes sense.

Maybe it’s that you’re supposed to be happy that makes it so impossible to muster any joy or sentiment. Nobody wants to be told they have to decorate cookies or deck the halls. That’s not a should. Trust that if it’s a really rough time in your life that it won’t always be. It’s just for now. Be where you are. The only way I know through grief is to take one moment at a time. Even breathing or thinking can be so difficult at times.

Do what feels good. If you like driving around looking at lights, or going to see a performance of the Nutcracker, or sitting in front of a fire cracking nuts–do only what brings you a sense of peace. That’s the essence of this season. Don’t get caught up in the busy-ness, just do what’s easy.

“Treat yourself like you would your best friend,” I said to a friend who’s having a tough time. She’s one of the kindest, most giving, patient people I know. Too bad we don’t always extend that generosity to ourselves. I asked her what her best friend would tell her to do–she said, “She’d make me hot tea and tell me I can go put on my jammies.” Good advice–we should listen to ourselves once in a while.

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Caregivers are often told to take care of themselves, and sometimes this advice is a little annoying.

Exactly how am I supposed to take care of me? Not give my mom her pills in the morning? Go to the gym instead?  Not take her to physical therapy? Not help my kids with their homework or fix dinner? Just soak in the bathtub all day? Right…

Yes, the stress builds and you can’t sleep, you’ve gained 40 pounds and you’re pretty sure you’re depressed but you don’t care to go to the trouble it would take to find out. Self care sounds like a fairy tale most days, but don’t think that the self-help movement is some new-age 70s feel good way of thinking. It’s not. In fact, it’s as old as Socrates…

One of my favorite books is Eye Witness to History, edited by John Carey. It’s first hand accounts recorded throughout history, and as a memoirist and writer, I love having a front row seat to the most stunning and scary historical moments man has ever witnessed.

The first account is written by Plato and recounts the death of Socrates. The year was 399 B.C., and for those of you (us) who might be a bit fuzzy about Greek history, Socrates was a philosopher and teacher, (and he’s still widely debated today–both as an individual and for his teachings). He got in a bit of trouble with the Atenian government and was considered a “gadfly”  (a fly who stings the horse into action). He wound up in prison and was proved guilty of corrupting the minds of the youth of Athens (political minds, that is) and was  ordered to drink a deadly mix of hemlock poison, which killed him.

On the last day of Socrates life, his friends, including Plato came to visit him and asked,  “Do you wish to leave any directions with us about your children, or anything else. What can we do to serve you?” 

Socrates replied: “Nothing new. If you take care of yourselves , you will serve me and mine and yourselves.” 

So this idea of caring for yourself first is the best way to care for another isn’t new. It just makes sense and that’s why it’s been around for so long. When we “sacrifice” ourselves for too long, we lose ourselves, we deplete who we are. Sometimes it’s needed–giving all you have–but it isn’t a sustainable long-term model.

During the last couple of years of my mom’s life (she had Parkinson’s, heart disease and Alzheimer’s), I can tell you, there wasn’t a whole lot of self-care going on. I had to pull it out–long hours, lifting my mom, hospital stay after hospital stay. I rested when I could–napped in the middle of the day–or any other time for that matter, took long showers. when my family members could take over “mom duty.”

I simplified my life–letting go of work, friends, saying goodbye to many activities–but I held onto a few lifelines. I journaled every day. Not a lot, but when the tears or screams built inside, I’d anchor them onto a page. I slipped  outside to pray and think, allowing nature to nurture me. I returned to take a college class one night a week–up until the last six months of my mom’s life. I got a new puppy to bring us all joy and laughter and remind us that life does indeed go on. Other aspects of my life were put on hold. That’s just part of it–for a season.

Self-care isn’t always a bubble bath and candles. It isn’t impractical nor is it selfish. The only way for a caregiver to do it is to incorporate small amounts of self-care throughout the day. Read a line or two of a poem. Buy your favorite coffee and refuse to get up off that couch and take care of anyone until you drink that first cup. Put a lock on your bedroom door and use it. Take short five-minute walks in your yard. That may be all the self-care you get to, but those few snatched moments here and there add up.  You’ll find a sense of calm comes over you when you’ve honored your own soul.

Take care of you and yours and you will serve me well. Good advice. No wonder Socrates is still remembered today.

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Caregiving takes all of you–your heart, your arms, your back…and like all relationships, we’re bound to make a few mistakes along the way.

I made plenty of mistakes caring for my mother. She had Parkinson’s and Alzheimer’s and her care progressed over the course of 12 or so years. At first, my caregiving consisted of calls, driving her places, overseeing her medications and doctor appointments–to eventually moving my mother into my home so I could give her full-time care. My mother passed away in our home and those last few months were some of the hardest and one of the most important times of my life.

So I understand why caregivers do it–push themselves to the edge. We have to give it our all at times–during hospital stays, as Alzheimer’s takes a dark turn, or as cancer ravages those we love.

I was watching a special on NASA’s quest to land on Mars. It’s 100 million miles away. That’s quite a dream and they’ve made lots of mistakes along the way. Costly mistakes. Some blunders can be blamed back to one person or one department, but some accidents are random, unpredictable–human error, solar flares, that most dangerous time when they enter the atmosphere that could wipe out everyone’s work in an instant and set research back years. It’s a huge risk, but the alternative is not to try at all.

They call that time the six minutes of terror. That’s when they’re not in communication and whatever happens is just going to have to happen.

That’s what it’s like to love someone, to try, make mistakes, deal with other people’s mistakes–and it all comes down to six minutes of terror when you have no idea how it’ll work out–all you can do is hope.  

There are a few caregiving mistakes you can avoid:

  • Caregiving too soon. Those first few calls from the emergency room scare you do death and it’s so easy to buy into the drama, to freak out, worry, and jump in. But the problem is, you’ve got to pace yourself. Caregiving can be one long journey and it’s wise not to react emotionally to every blip, to ask for help, and to look at the big picture and make short and long-range plans.
  • Caregiving too late: I was so busy being a mother to my children that I believed my mother when she insisted she could live on her own. I had little checks, little moments of concern–but I denied and ignored them. I wanted–and needed–her to be okay. I knew she was happy living at home–but I wasn’t paying attention. She wasn’t eating right, she was falling all the time (lots of bruises, lots of excuses), and although I was driving her or arranging for her transportation needs, she was desperately holding onto a life that was slipping away.
  • Leaving Yourself Out of the Equation: Worry, lack of sleep, long periods of recuperating from a bad fall or an extended hospital stay…you start to forget. You throw on your clothes, forget to comb your hair, don’t bother with check-ups, don’t fill your prescriptions. You’re always on alert. You don’t mean to, it just happens and months or years down the road and you forget a piece of you. You forget how to have fun, how to let go, how to relax. 
  • Taking Every Piece of Advice or None at All: Either extreme is exhausting–and scary. When I first realized my mother had Alzheimer’s I read everything i could get my hands on–it freaked me out.  I could see our future–her completely mad, me attempting to reach her. In truth, it wasn’t like that–not for a long time. We still had each other. We laughed, We ate together. We held hands. Yes, it got bad at the end but I’m still glad I went down this path. Too much information can drive you crazy. No information is foolish–there’s good out there. Treatments, medications, resources that help–but it has to stay in balance. You have to decide what you listen to.
  • Giving into Guilt and Depression: Both are bricks on your soul. They’ll drown you. I can’t say it’s not going to happen, that you’re not going to have bouts of guilt. You will. I can’t even tell you that depression won’t sneak up on you. But be careful. Depression is tricky. It’s like an alligator–it’ll take you under and won’t let you back up.
  • Not Trusting the Journey: You’ll get off center. You’ll lose your way. You’ll go to the bitter edge–but don’t believe that can’t find your way back.  Humans are amazingly resilient–we can nearly freeze to death or drown, fall down a mountain, recover from life-threatening illnesses–and survive. Don’t think for a minute that you can’t recoup from caregiving. You can. You gave of yourself and the good that you gave will return to you.
  • Not Letting Go: There comes a time when you have to let go. Whether it’s creating a healthy emotional distance or grieving an impending death, we have to learn to let go. I remember one very difficult night when my mother was having a bad episode. She was frantic, not knowing where she was, and I had to pry her hand loose from the rail just to get her back in the bed. I couldn’t do it by force and I didn’t want to hurt her.  I had to undo each finger, gently, calmly, and I knew right then that I was meant to help her figure out how to let go of this world. Letting go isn’t about giving up. Letting go is really about trusting.

All we can do is self-correct. We get off. We yell. We beat ourselves up for saying or doing the wrong thing. We fall into a funk. We lose our way–and all we can do is recognize it and alter our course. Every day, every hour offers a new choice.

Life’s a lot like that bouncing Land Rover on Mars. Will we survive the impact? Will we survive our own mistakes? Will we experience our own six minutes of terror?

Sure we will, but we have to try. 

~Carol O’Dell

Author, Mothering Mother

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