In an experience where so much feels and sounds different, you feel intimidated, out of your element, inadequate. You feel frightened that you won’t know what to do, how to do it and how to say it. You worry that you’ll look silly in front of others.

And, so does everyone else. Sarah reminded me that our fears are universal and that when we connect with others who feel the same fear, we create a bind that helps us all move forward. When we stand alone in our fear, we stand still. When we pretend we don’t have fears, we can’t embrace a way to overcome them.

When we share our fears with others, we find the courage to face them, to keep moving. And, when we share our own vulnerability, we help others share theirs. That’s an incredibly powerful connection.

When you can, find a safe place to share your fears—in a support group, journal, close friends. And, of course, please feel free to share in our comments section, below. Chances are, we know exactly how your fear feels.

Updates

1. Help get the word out about Job Jar Day! On October 22, we’re encouraging family and friends to help the family caregiver in their lives. Feel free to share our press release on Twitter, Facebook and with your local media.

2. Our next #carechat takes place on Sunday, October 16, at 8 p.m. ET. We’ll talk about how to cope with the changes in caregiving. To join us, just go to tweetchat.com, log in with your Twitter credentials and enter our hashtag: carechat.

3. Our next live call-in episode of Your Caregiving Journey airs October 18 at 7:30 p.m. ET. Call in and share your answers and insights to this question: What’s scary about caregiving? 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.

Related Articles

• Tell Us: What Was Your Caregiving Culture Shock? (caregiving.com)
• No Regrets (Fingers Crossed) (caregiving.com)
• Tell Us: In Six Words, What’s Your Responsibility? (caregiving.com)
• Job Jar Day is October 22 (caregiving.com)
• Tell Us: When Does Caregiving Steal Your Spirit? (caregiving.com)
• Ready (caregiving.com)
• Respecting Yourself with Boundaries (caregiving.com)

I’ve been down this road before so I hope not. My own mom died 2 ½ months after a cancer diagnosis.

Tests were run today and we should have more definitive answers tomorrow morning.  PET scan tomorrow if the tests today don’t give them enough information.

She has had a rough year: stroke, heart attack, valvuloplasty, infection from valvuloplasty, lots of PT & Speech therapy as well.  She was just starting to feel good again.

My dear husband has been her main caregiver (doctor’s appointments, driver when she couldn’t drive, etc.) and this is hitting him hard.  They’re very close.

Caregiving never seems to involve just one caree, does it?  Whether it’s consecutive or simultaneous stints – maybe it’s because we’re so good at what we do.

I don’t want to “take” too much from everyone here – you’ve all been so incredibly supportive of my caregiving path with Robert but I did want you all to know what was going on.  I know I can lean on you just as you can lean on me and sharing this with you is important to me.  Thanks for listening.

What Color is Your Plate by Max Wallack

http://www.alzheimersreadingroom.com/2010/08/what-color-is-your-plate.html

some highlights:

“Forty percent of Alzheimer’s patients don’t eat enough…”

“…vision plays a role in Alzhemer’s patients reluctance to eat. This phenomena is explained by Boston University bio-psychologist Alice Cronin-Golomb and her research partners in an article subtitled — ‘If you couldn’t see your mashed potatoes, you probably wouldn’t eat them.’ ”

“Previous explanations for this phenomenon included depression, inability to concentrate on more than one food at a time, and inability to eat unassisted.”

“Cronin-Golomb and her colleagues took a different approach. “They believed this behavior might be explained by the visual-cognitive deficiencies caused by Alzheimer’s.  Patients with the disease cannot process visual data—like contrast and depth perception—as well as most other seniors.  So Cronin-Golomb’s team… tested advanced Alzheimer’s patients’ level of food intake with standard white plates and with bright-red ones.”  “What they found was astonishing — patients eating from red plates consumed 25 percent more food than those eating from white plates.”

Which begs the question, as one commented posted, “what color do we use to… stop eating?”

Dealing with my husband’s progressing brain tumor is bad enough, but I just don’t know what to do with his family.  I feel so invisible at times, bullied at others.  Not sure if I want to hide in the closet or yell.

Can anybody relate?

Sometimes, managing the family (yours, your caree’s) can seem like managing a regiment of complicated medications. Some family members you can take in the morning, others cause you to take too much candy after an interaction. And, if you mix up the regiment, you get too many complications—misunderstandings, hurt feelings, awful arguments. And, of course, you also get the upset stomach.

So, what’s it like for you with family? Please share your experiences in our comments section, below. And, one of our commenters will win an autographed copy of my book, Good Morning! Sunny Reflections to Start Your Day.

Thanks so much for sharing!

Resources

• 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.

http://www.whitehouse.gov/citizensmedal

I don’t know if she is eligible because of some nuances of the qualifications but one of the first people I thought of:  our very own Denise Brown

Consider the medal criteria:

Someone who has engaged in activities that have had an impact in their local community, on a community or communities elsewhere in the United States or on fellow citizens living or stationed around the world.

“Denise debuted Caregiving.com in 1996.  She is the author of The Caregiving Years, six stages to a meaningful journey; Take Comfort, reflections of hope for caregivers; Good Morning, sunny reflections to start your day; Take Comfort Too, more reflections of hope for caregivers.  Denise’s insights into caregiving have been featured in the Wall Street Journal, SmartMoney.com, Time Magazine and the Chicago Tribune and she is a professional caregiving coach working with family caregivers and professionals.”  That’s a broad impact.

Individuals who have demonstrated notable skill and grace, selflessly placed themselves in harm’s way, taken unusual risks or steps to protect others, made extraordinary efforts to further a national goal, or otherwise conducted themselves admirably when faced with unusually challenging circumstances.

On top of all her list of accomplishments, and on-going coaching responsibilities Dennis conducts webinars, writes blog posts herself, and even Tweets several times a day.  She’s now started a new site, AfterGiving.com because she knows life doesn’t end when the caregiving does.

Have you ever noticed that she comments on nearly every post we write. If you’re like me you wonder when does she eat and sleep?  It has to be taxing.  I doubt she would endure it if she this wasn’t more than just a vocation to her, I suspect it’s a passion of her life, helping those of us privileged to be Caregivers.

Individuals who have made efforts to combat stubbornly persistent problems that impact entire communities, for example those who have taken innovative steps to address hunger, homelessness, the dropout crisis, lack of access to health care, and other issues that plague too many Americans.

Talk about stubbornly persistent problems, it has been said that “There are only four kinds of people in this world… those who have been caregivers, those who currently are caregivers, those who will be caregivers, those who will need caregivers”  Around 2008 it was said that there were “34 million people caring for parents today, a figure expected to double in the next 20 years.”  These figures obviously don’t include those caring for spouses, siblings, children, other family members or even non-relatives.  To say this is a huge issue is an understatement.  With good reason 2011 has been designated the Year of the Caregiver.

Denise Brown has intentionally positioned herself squarely in the midst of this unfolding tidal wave.  She’s not on the sidelines safely publishing journal articles poo-pooing the declining state of family caregivers; she’s in the trenches, coaching, encouraging, referring additional help, broadening the community of support, she serves where she feels she can do the most good.

The ideal nominee for a Citizens Medal is a person whose work has had a meaningful and lasting impact on the lives of others.

You can each best answer this but I’ve read numerous blogs here expressing how grateful they are for Denise and her outreach.  Perhaps one of the most appreciated of her resources are the blogs.  Via the blogs we have a voice, an outlet for our emotions, a journal for our thoughts.  It is a priceless tool to give voice to what is happening to us and to those we love.

The Presidential Citizens Medal offers an opportunity to say “thank you” for a life of extraordinary service.

Denise Brown you exemplify a life of extraordinary service.  This will probably never reach the President of the United States but I want to stand in what is a long line and say to you, “thank you and may God bless you!”

I loved this book, as you’ll hear during our discussion. Amanda provides really helpful exercises that help you gain acceptance of exactly who you are. We often place labels on ourselves—what’s good (kindness), what’s bad (selfishness). With these exercises, you learn that nothing about ourselves is bad. In other words, it’s all good. With this acceptance of ourselves, we become more accepting of others. We lose our judgments. As we lose our judgments, we become much better at receiving.

Think about it: When did you judge an offer of help? As you judged, you said, “No.” That judgment is a way to not receive.

Amanda gives us another option: Receive everything; decide later. With this approach, you offer yourself options and choices while still receiving. You’re still open for business as you decide how to stock your caregiving store’s shelves.

Amanda also offered us a perspective on the importance of receiving. When we only give, we end up surrounding ourselves with only givers. When we give and receive, we have both givers and receivers in our life.

Doesn’t that sound nice?

Please feel free to share any thoughts about our show in our comments section, below.

I’ll admit it. Robert hasn’t seen a dentist in several years.

(I’ll wait a minute for the outcry to die down. . .).

Sorry, okay? I didn’t take Robert to the dentist.  It was on my list of things to do but it never got done. Now that Robert is in this new “system” he sees a doctor once a month for a check-up, has his eyes and hearing checked at least annually and will see a dentist quarterly. Thank goodness! Things I can cross off my list!

Robert had to go to the hospital to the see the dentist. This dentist uses anesthesia on his patients so he is able to do a very deep cleaning and also take care of any extractions at the same time. I found this to be a little bit of overkill but cleared it with Robert’s neurologist and gave my consent.

Because I hadn’t taken him to see the dentist (yes, the guilt is creeping in) I was expecting the worst at this appointment (seizure medications are known to rot a person’s teeth). I thought there was a very real possibility of extractions. A lot of them.

Because I had something at work that couldn’t be changed, the Sister House Manager brought Robert to the appointment and would stay with Robert for the entire appointment. I could only stay for a portion of it. This was very upsetting to me but the dentist is so busy that a change in the appointment time was out of the question (and after neglecting his teeth for so long, I didn’t want Robert to have to wait another six months). See how responsible I am?

Sometimes it’s very difficult for me to accept help (um, don’t talk to my Hubby about that one). Oh, fine. It’s always difficult for me. In this case, I had no choice. Reluctantly, I relied on Sister House Manager to help me with this appointment. She turned out to be a fabulous, sweet, caring woman who was very patient with Robert. I felt comfortable leaving Robert in her care.

While we waited for Robert to be called back and prepped for the appointment, Sister House Manager stepped away to get coffee which left me a perfect opportunity to have a private conversation with Robert. I spoke to him about his recent behavior (the yelling and the refusal to let people help clean him up). I was firm in my instructions to him (you have to be nice and you have to let people help you get cleaned up). I told him I understood it was embarrassing but the workers were there to help him and he had to be nice to them.

“Okay.”

Do you understand, Robert?

“I understand.”

Are you going to yell anymore?

“No.”

Are you going to let them help you get cleaned up?

“Yes.”

Thank you, hon.

When Sister House Manager returned and Robert had dozed off, I talked to her about Robert’s behavior. I told her that I had a talk with him and there shouldn’t be any more problems (for a while anyway). I also told her I was afraid they would evict him or the Day Program would evict him and she assured me that would not happen. She was so convincing that I actually believed her and felt such relief that tears welled up in my eyes (either that or it got very dusty in the hospital lobby all of a sudden).

I also talked to her about the stool softener Robert was on and asked if that might be part of the problem. WARNING! WARNING! – GROSS DISCUSSION AHEAD. (Oops, too late?)

Robert has been on Colace for more than two years and if this is making his stool too super soft then that has to be contributing to his problem of keeping himself clean. She agreed that might be part of the problem and promised to discuss the issue with the nurse. I explained that Robert was first put on this medication when he was hospitalized two years ago and the “order” followed him to the Skilled Nursing facility to the Assisted Living facility to this facility. No one (including me) had reviewed whether or not he actually still needed to be on it. I think it’s time for a review!

The dentist was running late but I was able to stay until Robert was taken to the prep room. He had four nurses helping him get comfortable and taking his blood pressure and doing a quick EKG. I joked about how he had so many women working on him and he slowly looked around at each of them letting a grin spread across his face. “They’re all good looking too.”

The nurses went wild! Who knew Robert was such a flirt? The nurses were in love and I knew he was in good hands. Sister House Manager was laughing and assured me he would be fine.

I left to take care of my stressful task at work knowing that Robert’s behavior problem had been addressed, that his hygiene problem may be resolved with a simple change in medication, that he was having his teeth checked and that he was enjoying himself and entertaining the nurses. I felt a little bit of relief when I left there. (Although I still expected Robert to wake up with far fewer teeth than when he went in).

A few hours later, Sister House Manager called to say Robert was awake and doing great. They would be returning to the New Home soon.

What about his teeth? Does he need dentures now?

Nope, Robert didn’t have any cavities or extractions or any other problems with his teeth!

“Feel guilty about not taking Robert to the Dentist sooner.”

I’m crossing that one off my list.

After a few issues and glitches, I’m happy to say we have online support groups again! The groups are part of the site, which differs from how we used our previous groups. With the other groups, we emailed each other. Now, you can visit the site to read our content AND connect with your group.

I’ve created 14 groups for us. One group is open–meaning its messages can be viewed by anyone, including members. The other groups are private, so only group members can view the messages. You’ll recognize the groups and a few new ones I’ve meaning to add for a long time. Feel free to join as many as you’d like. To join a group, just request membership.

Even better: You can start your own group. Perhaps you’d like to provide regular updates to family members and friends. You can create your own private group, invite your family members and friends to join, and share updates and messages on your own forum. Or, perhaps you’d like to start a group about a specific disease—that’s great. Go for it!

The groups are free and available to all members of Caregiving.com. And, membership is our other new feature. I think you’ll love the membership feature; all members have a profile making it easier to get to know each other. And, as a member, you can keep us posted on how you’re doing by sharing regular updates.

Give yourself time to get used to the new features. Change can be stressful, but I think you will like this change.

Thanks so much to everyone for your patience and understanding as I get us back on track with our groups. I’ll be adding new features soon and will keep you up-to-date as I do.

To join Caregiving.com, go here. Joining is free and easy.

Are you already a member of Caregiving.com? Go here to join our groups.

Our happiness is a combination of genetics (60%) and our efforts (40%). Elizabeth gave us tips to help us increase the impact of that 40%. If we can feel better, why not? Her suggestions:

1. Become aware of your positive to negative ratio of comments you say. For most, our ratio of negative to positive comments is 5 to 1. We say five times the amount of negative comments as we do positive. EEK!
2. Before communicating, catch yourself. Be aware of your comments, facial expressions, even thoughts.
3. Try to increase your positive to negative ratio to 5 to 1.

When you have more positive thoughts and comments, you’ll feel a change in your mood. You’ll feel more positive. You’ll feel happier.

We also spoke about the importance of finding happiness during a difficult life event, like caregiving. Caregiving will steal so much—don’t let it take your happiness. And, rather than chasing happiness, I think it’s actually something we can give ourselves.

What do you think? Do you notice that you work much harder at having happiness during caregiving? Please share your thoughts in our comments section, below.

Related Articles

• Happiness Project: February (caregiving.com)
• Can You Be Happy, When It’s Serious? (caregiving.com)
• Tell Us: Who (or What) Steals Your Joy? (caregiving.com)

Transitions and turning points are natural parts of the caregiving landscape. Make decisions, change decisions. Devise plans, undo plans. Settle into a rhythm and the beat changes.

One of the toughest transitions? Knowing when your caree needs more services.

Family caregivers know that things will change. They understand that their caree’s health will decline. They recognize that certain treatments may help but that, at some point, treatment alone will not suffice.

But knowing and doing are two very different things. It’s one thing to recognize when your caree moves into a new phase of the disease process. It’s another to stop and say, “She needs more help.” And then it’s another thing entirely to call a professional who can provide that help.

First, there’s the guilt thing. Why can’t I provide what she needs? What if the person I hire doesn’t do things right? What if he thinks I’ve given up on him by getting help?

If your caree needs more help, it doesn’t mean you have failed. It means that the person under your care has new needs to be met, needs that may require more specialized services or more hours of care than you can provide. You can’t add more hours to the day, so you may have to add more people to the caregiving equation…and it’s okay to do so.

Then, there’s the next step thing. What help do we need?

You’ll find your answers by taking time to assess the current situation. You may want to ask other family members and friends for their input. What do they notice? What services do they think would help? Even though it may be tough to hear their suggestions, input from outside your situation may provide you with helpful perspectives.

If possible, talk with your caree about your concerns. He or she will likely notice if you’re under pressure, which may in turn influence the quality of care you provide. An honest and open conversation may make all the difference.

If your caree visits the doctor regularly, then the doctor can probably tell you whether your caree’s physical condition requires more specialized services.

How you feel during your day may be the strongest indicator that caregiving is getting the best of you. You will know when you and your caree needs more services if you feel…

• …you don’t have enough hours in the day for what needs to be done (both as a family caregiver and as a person with other responsibilities and needs of your own),
• …stressed out (i.e., you can’t sleep, you’re depressed, you lose your patience easily, you’re eating too much, etc.),
• …overwhelmed (Which meds does she get on what day? When is his next therapy appointment? Where is the cancer specialist’s office located?), or
• …exhausted, especially after a good night’s rest or a period of respite.

If you identify with even just one of the above characteristics, then it’s time to evaluate the caregiving state of affairs. You can gain a better understanding of your situation by asking yourself these questions:

• Which tasks and responsibilities feel like a struggle?
• What times during the day do you feel the greatest amount of stress?
• When do you find yourself running late, losing your temper, scrambling for a solution?
• What do you find yourself dreading or hating?
• When do you find yourself in a tug-of-war with your caree?
• What times of the day are tough for your caree?
• When during the day does your worry about your caree intensify?

Your answers to these questions will help pinpoint when and with which tasks you need more help. Then, begin brainstorming options. Solutions may be scheduling more respite or hiring a cleaning service or delegating more responsibility to your children/spouse. Look for professionals, like home care agencies, to manage the more complex and intense care needs.

Above all, remember that being at your best means you have to take care of yourself. If you’re not factoring your needs into the equation, things will eventually fall apart.

Living in the moment with a spirit of flexibility is crucial to successful caregiving. Easier said than done, right? Of course – but there is great freedom in flexibility. Letting go means accepting what is to come without putting the entire burden on your own shoulders, a weight that even the strongest person cannot manage forever.

How did you know when you and your caree needed more help? What additional help did you get? Please share your thoughts in our comments section, below.

Visit SeniorsforLiving.com to find out about home care options that may provide some assistance to you.

Resources

You’ll learns lots of great coping strategies by listening to our monthly free webinars, all archived here.

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• National Kidney Foundation Needs Family Caregivers for a Survey (caregiving.com)
• Family Caregivers Want Help from Web-Based and Mobile Technologies (caregiving.com)