Archive for May, 2009

Mom’s (Or Dad’s) In and Out of the Hospital, A Caregiver’s Challenge

Having your loved one go in and out of the hospital is a caregiver’s challenge. You barely establish a decent routine, start to get a bit of continuity to your own life, and wham! Back in the hospital. Back to square one. It’s a challenge, yes, but it’s also a reality. How do you handle the changes in schedule, the interruption to your life, your loved one’s physical and emotional issues that come with hospitalization–and, just when you thought your head would explode–you have more doctors, nurses, and aides to deal with than ever before!

One of the hardest times I faced as a caregiver came when my 90 year-old mother who suffered from Parkinson’s and Alzheimer’s was in the hospital for the third time in 8 months. After getting my mom through the initial medical issues at hand and got her settled, I came home absolutely exhausted and fell into the bed. I fell into a deep sleep only to be awakened by a phone call.

I had hit a physical and emotional wall.

“Your mother has finished her IV, please come and get her,” The nurse said.
“Tomorrow morning?” I asked, trying to wake up and sound nonchalant.
“No, tonight. She’ll be ready at 8pm,” The nurse replied.
“Tonight? Who releases a 90 year-old woman at night?”
I hung up the phone and laid in the bed and cried.
I showered and cried.
I dressed and cried.
My husband drove me to the hospital and I cried all the way there.
I dressed my mom, put her in the car and drove all the way home–crying.

But we got through it. It wasn’t mom’s last hospital stay by far. It was just the hardest.

I had to learn to minimize the effects of hospitalization for my mom as well as finding ways to adapt to the in-and-out, up-and-down, crazy chaotic family caregiving life. Here are a few things that helped:

Keep a bag packed and ready to go for you and your loved one:
Remember when you were pregnant and you kept your hospital bag packed? It helps to have little things like house shoes, a clean gown and underwear, a paperback or crossword puzzle book, a night light, and a small blanket ready to go. These creature comforts nurtured me (and my mom) in small, tangible ways.

Always take the meds with you:
Even if you think you’re just going to the ER and you’ll be back in a few hours, take your loved one’s medications. If you get delayed, you’ll need them. I know the hospital will tell you they’ll administer the meds, but it could be hours and hours to get checked in so it’s best to keep on schedule as much as you can. Nothing is more worrisome than to not have your meds available when you need them. And of course, take your ID and insurance cards because you won’t get far without them.

Be Nice to the Staff:
This is just being smart, but it’s also the nice thing to do. The nurses, aides, and other hospital personnel are overworked and overwhelmed, and when you think about it, a person can’t really be paid to actually care about another human being.  Hospital staff are paid to do their jobs but the real emotionally-centered and empathetic part of  caring must come from their hearts and it can’t be paid for — they must give it free.  So be kind and caring to the care staff and you and your loved one will be more likely to have the gift returned to you. Say thank you–verbally and in other ways. Bring in bagels for breakfast, or chocolate covered popcorn. Stop by and say hello on your way in–little kindnesses add up. Your loved one will benefit, yes, but you’ll also start to feel that you have partners in caregiving.

Know When to Speak Up:
As much as I advocate being nice, there are times when you have to be firm. You are your loved one’s advocate. Your loved one doesn’t have anyone else but you. You have to know what’s going on, you have to be aware, and you have to speak up when it’s necessary. Medical mistakes happen all the time. You know your loved one’s medications, you know how much they take and when, you know what procedure has or hasn’t been done. You have to be there to talk to the doctor, to help decide the course of treatment, and to make sure a “mistake” doesn’t jeopardize your loved one’s life. Take notes, listen carefully, ask questions, and summon all your nerve to address a potentially serious issue.

You’ll get to where you fall into “hospital mode,” is what I coined it. To this day I can walk into the hospital, locate the best coffee, the good chipped ice, the hall closet with the extra blankets, request a cot or a more comfortable chair and start chatting with the staff–all within the first few hours. It’s an odd skill but you can learn how to make a temporary home out of an orange vinyl chair.

May 5, 2009 at 6:00 am 1 comment

“I Just Can’t Seem to Get on a Good Schedule,” Finding a Caregiving Routine that Works for You

Are you the “put-it-off-til tomorrow type?” Or are you the “get-it-done-now” type of caregiver?
It’s okay to be either way. Caregivers and families come in all types.

I worried if I really could take care of my mom properly. She had Parkinson’s, heart disease, and later, Alzheimer’s. Those are some tough diseases with lots of medication and physical needs.

I’m a laid back kind of gal and I wondered if I “had what it takes.” On top of that, my mother didn’t mind telling me what to do…every day, all day long. Her personality was at the other end of the spectrum. She used to say to me, “I can do it while you’re still thinking about it.” I had to learn that each of us have gifts, and all our gifts are needed.

My mother’s medication schedule and doctor appointments ruled our days. I needed some “me” time–time to journal, to stretch, to call a friend, and to be with my husband or just take a bath. Figuring out how to put “me” on the “to do” list wasn’t going to easy…

I had to find a system that worked for me. I knew that if I cracked the whip and forced myself to get up at 5am that I’d be fussy and miserable, and I’d crack. I read up on my mom’s various medications and came to the conclusion that as long as I was consistent, it didn’t matter when I started or ended—every four hours was the important part.

I knew that my mom couldn’t walk well without her Parkinson’s medicine in her system and so I learned to appreciate our routine. Staying on schedule with her meds and exercise benefited both our lives. I wanted her to be able to walk. I wanted her to feel good and move easily. I sort of struck a compromise and created an 8, 12, 4, and 8 schedule of meds that allowed me a few precious hours of sleep in the morning. That helped because I usually got up with my mom 2 or 3 times a night. I encouraged her to prop herself up in the bed and spend the first few minutes in the morning relaxing and letting her meds “kick in.”

I came up with a sneaky plan to slowly “trained” my mom to sleep in a bit later than she was naturally used to. That meant backing it up and limiting her afternoon naps and getting her in bed for the night at about 8:30. Even getting my mom out each day to sit in the sun would help to set her circadian rhythms. She fussed at this, but once I got her out the door she loved sitting in my garden.

Isn’t a bit too bosy to give your mother a bedtime? I wish someone would give me a bedtime, make sure I’m bathed, tucked in cozy and kissed goodnight! Besides, her body needed one, and most definitely, her daughter needed her to have one. What if she woke up 6am? II made a plan: I kept a small container of crackers and a sippy cup of water near her bed—and made sure she could reach the remote control. Some mornings it actually worked!

Have you found a routine that’s working good at the moment? \

I hope you’ll leave a comment and offer your suggestions to fellow caregiver.
It’s so great to get a tip you’ve never thought of.
In the meantime, don’t give up, plan your day to match your natural rhythms.

May 2, 2009 at 6:11 pm Leave a comment

Caregiving is Like Running a Marathon with a Bear Chasing You

Caregiving is a lot like running a marathon…with a bear chasing you.

You have to pace yourself because the according to the Family Caregiving Alliance, the average caregiver is in that role for 4.5 years. If that’s the case, then just like a marathon, you have to somehow figure out how to build your stamina and sustain it for the long caregiving haul.

And like being chased by a bear, caregiving has a “fear factor” element. You know that antsy feeling you have all the time? It’s probably fear based.

Deep in your brain are worry-thoughts: I can’t do this, I don’t know how. What if they die? what if i die? Who would care for them? I’m scared to go in his/her room in the morning. What if I hurt them? What if this goes on forever? Fear-based thoughts we rarely allow ourselves to utter out loud.

So the goal is to keep moving, (marathon), and stay ahead of the fear-factor (bear).

For many, that 4.5 year statistic represents only a portion of their time. Your loved one may have early onset Parkinson’s or may show symptoms of Alzheimer’s in their 50’s or 60’s. After several years of home care, you may have to move your mom, dad, or spouse into a care home. It starts all over then. You have new adjustments, new challenges, and your caregiving journey is nowhere near over. It may feel that your big old snarling bear is getting the best of you. In time, you and your loved one find your rhythm again, and yes, even manage to savor a few more sweet times together.

I don’t share this with you to depress you. I share this with you so that you don’t burn out—and so you’ll begin to examine those scary whispers you’re hearing and begin to face them one by one. Caregivers aren’t perfect, but the good news is that you don’t have to be. Just like becoming a parent, you can read a few books, get tips from other moms and dads, but in the end, you just have to do it. Love you child with all your heart. Educate yourself the best you can. And learn to accept the mistakes you make along the way. Caregiving follows that same path. Love big and hard and do the best you can.

No one signs up for their first marathon knowing exactly what they’re in for. You can’t think about the blisters, the chaffing, the tears, the “I can’t do this” moments that seem to go on and on.

Just like in a marathon, I had to learn to chunk it down. Caregiving was way to daunting to face all at one time. Just like with a good run, start with walking around the block, then walk/run one mile, then two. Eat better, get to bed on time, find a running buddy, and envision yourself actually running the marathon. Over the course of a few months you’ll go from barely able to complete three miles to actually enjoying a good, brisk run. You’ll be proud of your accomplishment, and one day, you’ll actually say to someone, “I’m a runner.”

Caregiving has many surprises along the way. Hey, it’s not all bad! Yes, some days are going to be tough Some days you’ll wish you could run all the way to the other side of the continent! But other days you’ll feel a profound sense of pride. You can actually manage your wild and wooly life for brief moments at a time.

And one day, you’ll turn around and face your bear—and ask it for a dance.

May 1, 2009 at 6:04 pm Leave a comment

Are You Knee-Deep in Laundry? Family Caregiving Overload Examined

Being a smart caregiver isn’t about getting a degree in geriatric care. It’s about being prepared. It’s about caring for yourself so you can take care of those you love. Smart caregivers look ahead. That’s not as easy as it sounds. In fact, it’s downright contradictory to all you have on your plate. Caregiving overload.

Who can look ahead when your feet are mired in laundry, your counters are covered with prescription bottles, and your mom is calling your name…literally every five seconds! What is in your favor is that caregivers are problem solvers extraordinaire. You have to be.

I was my mother’s caregiver (she moved in with my family and me) after she developed Parkinson’s and later, Alzheimer’s. It was all I could do to meet the day’s requirements—medications, laundry, food needs, doctor appointments and interrupted sleep (mom had sundowner’s, which means she was more alert in the evening hours and even awake much of the night). Looking ahead was scary—and overwhelming. So I say this gently–start to formulate a plan for what’s next.

Will your loved one eventually need more care than you can physically or emotionally give? Begin to look around and find out what’s in your community. Attend a caregiver’s conference, go online and join a caregiver’s chat forum, and/or make a few calls. Preparation can save you valuable money, time and frustration. There are so many resources out there you don’t know about yet. Create a folder (on your computer and on paper) and begin to gather information. Knowledge is power. You don’t have to figure it all out right now, but begin to ask yourself those tough questions.

Taking care of you is almost cliché nowadays. What does anybody mean by that anyway? In terms of caregiving it means that you don’t compromise your physical or emotional needs in the name of caregiving—not to the point of it truly being detrimental to your health and your “life.” Yes, there is an element of sacrificing involved in caregiving. I had to go without sleep, spend many, many nights in the hospital at my mother’s side, strain to help lift and care for my mother (probably more than I should have).

But there comes a point to where it’s downright unhealthy or dangerous for you not to care for yourself. Too much neglect or abuse and your body and spirit will break down.

Ask yourself this question and answer honestly: Where am I neglecting or abusing myself (physically or emotionally) and what one small thing can I do consistently to change that?

Consistency is the bonus key that actually turns the lock. Just like your loved one needs their daily meds and meals, you need daily care and nurturing. You need to take your vitamins, stretch, walk, eat properly, take your medications (most caregivers are on meds themselves) and create routines that nurtures their mind and body.

Can you imagine going day after day without eating? A little self-care is fuel for the soul. If you remember those two “golden rules to caregiving,” your love and loyalty will do the rest.

Being a smart caregivers means looking at the whole picture.

May 1, 2009 at 5:49 pm Leave a comment

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Hi, I'm Carol O'Dell. This blog will include stories and lessons I've learned while caring for my mom, and now as I speak to caregivers around the country. I hope to offer suggestions, ideas and insights that will help others.

While this blog is supported by Dakim Brain Fitness, I’m not blogging to promote the Dakim company or products. Instead, I’m writing about how caring and being cared for affects your life and your family. My hope is that this blog gives you a place to learn, reflect, gain new perspective to make it another day.

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