Hello to all! It’s nice to be able to share my caregiving experience with others who understand or are looking for someone to understand what they are going through. Although I often feel so alone in my caregiving journey, I know I’m not. It’s hard to remember this every day. I found caregiving.com and found a place that I could talk with others about the good, the bad AND the ugly. So often, I find myself venting about a situation only to have to calm down and accept it, as is, often stepping back and excusing the situation, even if I don’t believe I should.

There are also days that I am so thankful for something someone did. I can tell them over and over how grateful I am but I just don’t think they really truly understand. Just holding the door open for me as I push my daughter in her wheelchair into the school is huge. Having a home to stay at on our numerous trips to the Hospital is amazing; lovingly and financially. I believe everyone is good and usually mean well but so many people really don’t know what it takes when you are caring for someone else, 24/7.

Thank you for giving me a space to share and also, welcome to others who are on their own caregiving journeys. Peace and Love, Kristen

Call (646) 652-4944 to share during our live show. Or, join our show’s chat room to post your insight. If you’re on Twitter, you can tweet during the show using this hashtag: #caretalk. And, to thank you for calling in the during the show to share, we’ll give our first two callers a Caregiving.com gym bag. Join us here.

Can’t join us tonight? Feel free to share your insights in our comments section, below. Let us know what feels scary and how you can overcome the fears.

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The pressure in caregiving can make the experience ripe for regrets. You worry about what’s right and what’s best, which means you may second guess every move and every decision. The pressure intensifies because you feel like you won’t have a second chance. This is it.

So, I’d love to know: What do you think about regrets? How have you handled regrets you’ve had? Please share your thoughts (and your reactions to our show) in the comments, below.

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Dictionary.com define responsible as “answerable or accountable, as for something within one’s power, control, or management.” The key component of this definition, Anna said, is the second part: It’s within your power, control or management.

And, that can be so hard in caregiving. You can may find yourself holding on to too much responsibility—otherwise it seems all will spin out-of-control.

Anna suggested that the presence of an overwhelming feeling of stress can be a signal that you hold yourself responsible for too much. What if you were to let go, Anna said, of what you can’t control?

I hope you enjoy our conversation. And, as always, feel free to add your thoughts and insights in our comments section, below.

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Call (646) 652-4944 to share during our live show. Or, join our show’s chat room to post your insight. If you’re on Twitter, you can tweet during the show using this hashtag: #caretalk. And, to thank you for calling in the during the show to share, we’ll give you either a Caregiving.com t-shirt or tote bag. Join us here.

Can’t join us tonight? Feel free to share your insights in our comments section, below. Let us know how it feels to be burn-out and what you did to feel better.

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Yesterday on Your Caregiving Journey, we began our new monthly series on dementia care. Claire Day, Vice President of Constituent Services for the Alzheimer’s Association Delaware Valley Chapter, joined us to explain what Alzheimer’s is, its warning signs and to answer two questions from a listener. You can listen to our show via the player at the bottom of the post. (Note: Claire will join us on the fourth Tuesday of every month at 10:30 a.m. CT, 11:30 a.m. ET, 8:30 a.m. PT) to share tips and techniques for coping.)

Claire reminded us that Alzheimer’s disease is disease of changes and loss of function. It’s not that we can’t find our keys. It’s that we don’t know how to use the keys we’re holding. And, the disease changes who we are—our moods, our personality.

During our show, Claire also answered two questions from a listener:

1. My mother hasn’t got up and dressed in the morning on her own for several months. On Saturday morning, she was up and dressed and sitting in her living room (although not dressed properly, still up and dressed). Is this another “unexpected” in dementia?

2. On certain days my mother is so opposed to sitting; she wants to be doing something, feels as though she should be doing something. Physically because of a stroke, she is not able to. Is reassuring her unsettledness enough? I often feel like I should be entertaining more.

Do you have questions for Claire? Be sure to share them in our comments section, below, or by sending me an email.

Resources

• 101 Activities to Enjoy with a Person with Alzheimer’s
• 10 Warning Signs of Alzheimer’s disease
  

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When we’re children, we sing all the time. We sing songs to learn, to express ourselves, to connect with others.

And, then somehow, as adults, we seem to stop our songs.

Sometimes we stop singing out of embarrassment that others may hear our imperfect key. Other times we stop singing because we decide the song can do without our voice. Many times we stop singing because we decide a tough time is no time for a song.

When we don’t sing, we unknowingly send a message that the world can do without song.

And, that’s just not true. We must sing. We’ve been given a voice (perfect in its imperfection), words and melodies. And, if we look around, we can see we’ve also been given a choir—family, friends, strangers looking to us to start the song.

To not sing, because of shame or self-doubt or judgment, means we choose silence. And, that’s just not acceptable.

Sing. When you sing, you give courage to others to raise their own voice in song. The louder we all sing, the better our world.

Updates

• We’re taking submissions for our Caregiving Art Show and our Help book! Be sure to share your art and your story with the world.
• Our 2011 Family Caregiver Survey report offers a snapshot into the day and life of a family caregiver. Purchase the report for just $9.95 here. (Did you complete the survey? You get the report for free; email Denise to request.)
• Last chance to sign up for one of our three-week caregiving classes, including Three-Word Journaling. The classes take place conveniently over the phone and help you feel better exactly where you are. Register here.
• We’re counting your miracles. Add yours here.

Resources

• Do you love our comforts? Then, you’ll love Take Comfort, Too, More Reflections of Hope for Caregivers. In Take Comfort, Too, Denise M. Brown takes 108 words—including Parade, Green, Red and Glory—and then turns each into a reflection. The reflections focus on a family caregiver’s reality, sprinkled with hope. Denise’s insights about the caregiving experience feel like a warm hug, a helpful smile and an encouraging nudge. Order here.

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During our conversation, Jennifer spoke about the feeling of camaraderie she feels from reading and sharing with fellow family caregivers. Her comments, as well as a recent post from Kristin, gave me a deeper insight about the power of sharing about a difficult life experience. Both Jennifer and Kristin spoke about taking inspiration from other family caregivers, that knowing others persevere inspires them to do the same.

So, I wonder: Do you think sharing about your experiences makes you a better family caregiver? Does sharing give you the energy (and, perhaps, faith) to keep going? Please share your thoughts in our comments section, below.

Updates

• Congrats to Brenda, who won autographed copies of Take Comfort, Too, Reflections of Hope for Caregivers and The Caregiving Years, Six Stages to a Meaningful Journey for sharing a six-word caregiving tip.

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To help manage her time away, Holly breaks out the trip into three parts: The planning, the trip and the return. For Holly, the planning can become overwhelming, which can tempt her into not believing the trip is important. When she’s feeling like she has too much to do, she remembers she has an Effort Knob, which she can dial down. And, she asks herself: Am I making this harder than it has to be?

She also reminds herself:

• I want to go.
• It’s best for me.
• What’s best for me is best for him.

We then talked about the trip itself and being in the moment of the break, rather than taking on a moment of worry (“I wonder if everyone is okay at home?”) which takes away from the purpose of the trip. We also talked about how family caregivers can get caught in the thought that staying home can prevent terrible things from happening. We worry about leaving and something awful happening. The idea that our presence can prevent can trap us into never feeling like we can leave. Holly reminds us that it’s absolutely okay to take a break.

Finally, we spent a few moments discussing what it’s like to go home after a trip. Going back home can sometimes be hard. For Holly, she has a realization of the reality of her life: “This is the marriage I have in my 50′s.”

And, that thought (“Oooooooh, this is my life”), which often comes after taking a break with others in a non-caregiving situation, will be the topic for our next talk with Holly. I’ll let you know the date when we’ve schedule the show.

After you’ve had a chance to listen to the show, I’d love to know: Which of Holly’s comments could you relate to? And, what’s been helpful to you in planning and enjoying breaks from caregiving? Please share in our comment section, below.

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You’ll have those days when you want to throw up your hands, scream “I’m Done,” and then just walk out the door, never to return.

You’re done with caregiving.

It could be that the day just became too much of not enough going well. It could be that the day included unhelpful comments from unsupportive family members. Or, it could be that you couldn’t get out and, wow!, did you want to get out. Or, you just had no idea what to do for your caree.

When any (or all) of these events happen, you want to turn your back on caregiving. Wave it good-bye for ever. Break up for good.

When you’re done, it can be so hard to stay. Here’s how to stay:

1. Accept your bad day. Fighting it often only makes it worse. You’ve having a bad day. Sometimes, you’re having a really bad day. It’s okay.

2. Know your bad day will end. Really. There’s only 24 hours in a day. And, you have to sleep at some point. Take comfort in knowing there’s an end point.

3. Stop doing what’s stressing you out. Sounds simple, but we often keep doing exactly what makes us miserable. Maybe you’re worrying. Maybe you’re doing laundry. Maybe you’re engaged in a battle of the wills with your caree. Maybe you’re visiting with family. Whatever it is that’s making you miserable, stop. Take a break from the worry. Save the laundry for another day. Put down your weapons. Excuse yourself from the family. Stop trying to solve a problem on your own. Just stop.

4. Give in to the day. Allow you and your caree (and any other family members) a break from the routine or the “must do’s” or the “have to’s.” Take time for a glass of lemonade (or water or soda) and two cookies for both of you. Give in so you can breathe.

5. Laugh at what is your undoing. When you step back and really look around, something funny is happening. Find the funny.

6. Do whatever you can to give yourself sleep as soon as you can. Take a nap. Rest in your chair. Go to bed early with permission to sleep in. Sleep often solves the problem of a bad day.

7. Write it out in your journal. Say exactly what’s on your mind and in your heart. If you’re worried about writing it out in your journal, then write it out on a separate piece of paper you can toss later.

8. Forgive. Forgive the disease, forgive your caree, forgive yourself.

9. Finally, know a bad day isn’t about you being a bad person. The bad day is about a circumstance, a situation, an incident. Keep the bad day in its place rather than letting it place you in the position of being wrong or bad or unworthy. You’re a good person whose bad moments seem to be overtaking the day. That’s it.

Days will come when you want to be done. Put the done in your rear view mirror by knowing good days lie ahead.

Updates

• What’s caregiving like for you? Share your experiences in our 2011 Annual Family Caregiver Survey; get a 30-minute coaching session with Denise and a chance to win a $100 Amazon.com gift card. Take the survey here.
• Do you love our comforts? Then, you’ll love Take Comfort, Too, More Reflections of Hope for Caregivers. In Take Comfort, Too, Denise M. Brown takes 108 words—including Parade, Green, Red and Glory—and then turns each into a reflection. The reflections focus on a family caregiver’s reality, sprinkled with hope. Denise’s insights about the caregiving experience feel like a warm hug, a helpful smile and an encouraging nudge. Order here.

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