The stress has taken over her days. The stress has become her life.

I think you can all relate. It’s what makes stress so insidious—it will grip your mind and soul with such a tight hold that it leaves little room for anything else. And, in caregiving, the cures for the stress, like getting more help (sometimes, you can’t get enough) or having Mary attend a local adult day center (there isn’t one nearby) can be an impossibility. It would be great if Mary could take a walk to tire herself out so she sleeps better. But Kristin lives in a remote area, in the mountains, which makes it hard for her and Mary to go out for a walk together. And, it’s long drive into town; a shopping mall for safe walking during the winter isn’t an option.

So, how do you keep Mary occupied long enough so that Kristin can take a break? It’s a caregiver’s conundrum.

We’ve put together a few ideas to increase a caree’s activity (to help promote a better sleep) and/or keep a caree occupied (so you can take a break):

Buck and Buck: The company makes dressing easier. It also makes undressing difficult—which comes in handy if you’d like to keep your caree either clean or simply clothed (or both). For instances, back-zip jumpsuits ensure a caree can’t slip out of clothes or reach into what you don’t want them to reach. Shop here.

Collector’s Choice Music: Purchase your caree’s favorite music, including Big Band, classical/opera and soundtracks. Also available are old radio shows. Visit www.ccmusic.com or call 800-993-6344.

Innovative Caregiving Resources: Researchers from the Gerontology Center at the University of Utah concluded that video respites work—and developed their own series as result. The videos are now available through an unrelated company, Innovative Caregiving Resources. Videos cater to a wide range of care recipients; in “Ladies…Let’s Chat” female carees will enjoy a visit with Diane and her  grandchildren and in “Lunchbreak with Tony” male carees take a lunch break and discuss first cars and stick ball.  Other videos are geared toward specific ethnicities (Hispanic, African Americans, Jewish) and toward holidays, such as Christmas. For more information, visit www.videorespite.com or call 1-800-249-5600 .

NASCO: Its online catalog, at www.enasco.com/senioractivities, features products to captivate your caree. You’ll products for persons with Alzheimer’s, as well as puzzles, games, sing-a-long videos and arts and crafts. You’ll want to peruse this company’s catalog and/or web site; it offers great ideas on how to keep you caree occupied with meaningful activites. Call for catalog: 800-558-9595.

Alzheimer’s Store: You’ll find products that keep your caree. Products are categorized by stages (Early Stage, Middle Stage and Later Stage), wandering, safety, forgetfullness. Visit www.alzstore.com or call 800-752-3238.

Puzzles and Games: You can find puzzles specifically for persons with dementia. Check out Memory Jogging Puzzles, MGC Puzzles, DignifieDesigns and Springbook Puzzles. You also can find more game ideas at Marbles the Brain Store; if you’re unsure of which game would be appropriate for your caree, call (877) 527-2460 to speak with a Marbles’ “brain coach” who can offer suggestions.

Sit and Be Fit: Sit and Be Fit is a line of exercise videos developed and lead by Mary Ann Wilson, who you’ve probably seen on your local PBS station. Mary Ann has tapes for persons with chronic illnesses, such as arthritis and Parkinson’s, as well as tapes for persons new to an exercise program. “The Caregiver’s Guide To Exercise Video” is perfect for carees who are wheelchair and bed-bound. Call 509-448-9438 to learn about the right exercise video for you and your caree. Or visit the Sit and Be Fit web site at www.sitandbefit.com.

Senior Yoga: In this DVD, yoga teacher Debbie Russo leads you through a series of chair poses to help you and your caree increase your strength, endurance and flexibility. You’ll enjoy improved balance and stress relief. Learn more here.

No-cost activity ideas include folding laundry, organizing recipes and looking through old photos. Your caree also may be able to complete simple household tasks, like water the plants or help with cooking or baking or help feed and groom the pets. You also can reminisce, asking questions about a caree’s past, and play a favorite DVD of a treasured event (like a family member’s wedding). You also can ask family and friends to regularly call and write letters or send cards.

I’d love to add your suggestions as well. In our comments section, please tell us: How do you keep your caree occupied?

Reminders: Our next talk show airs on Tuesday, January 10, at 7:30 p.m. ET. And, I have our question (inspired by our show with Kristin): How can our communities help prevent family caregiver burn-out? Call in and share your suggestions; first caller wins. You can listen here. And, we chat on Twitter tonight (January at 8 p.m. ET (7 p.m. CT, 5 p.m. PT) about your best caregiving tips. To join us, just go to tweetchat.com, sign in with your Twitter credentials and use our hashtag: carechat. Finally, be sure to sign up for one of our classes; you’ll be amazed at what you learn about yourself!

Related Articles

• Encouraging Kristin (caregiving.com)
• Alzheimer’s and Hospice (caregiving.com)
• *This* Is My Life (caregiving.com)
• Your Caree Declines, Your Health Care Costs Increase (caregiving.com)
• To Kristin’s We Went (caregiving.com)
• In Six Words, What’s Your Unexpected Benefit? (caregiving.com)
• What Do You Know About Caregiving That the World Doesn’t? (caregiving.com)
• A Tip for a Tough Day: Appoint a Love Substitute (caregiving.com)

You’ll love listening to Kristin, who shares how she became Mary’s family caregiver. Mary, most likely the victim of a traumatic childhood, had abused her children; as adults, her children could not care for Mary. Kristin stepped up to help and moved in to care for Mary.

At the show’s end, she described how she learned compassion from a person incapable of being compassionate. We’re going to continue this discussion when Kristin joins me for another show on Wednesday, June 29, at 9 a.m. CT (10 a.m. ET, 7 a.m. PT); she’ll also share the safety system she developed which keeps Mary safe in the house while she’s out gardening.

And, during the show, Kristin told us about receiving the CareGifters funds, how she used them and what a difference they made for her. The arrival of those funds was truly a miracle. Thanks so much to all who donated!

Reminders

• 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.
• Submit your story about “help” (however you define it) for our upcoming book. Deadline is July 1. Details are here.
• Our next show is Tuesday, June 21, at 9:30 a.m. CT. Anna Stookey joins us for a continuation of our conversation about depression in a caregiving life. Listen here.
• Take a class in our Caregiving Summer School! We’ve got a class to help you start Mondays with a quiet and calm heart; to help you learn the meaning behind your journey; and to help you start your journal. Each class costs $27; Denise leads the class. Register here.

Related Articles

• It’s Kristin Day! (caregiving.com)
• Talking Candy, Help and Bands (caregiving.com)
• Tips for Communicating with Dementia (caregiving.com)
• From Worrying to Trusting (caregiving.com)
• Resolving Money (caregiving.com)
• Jail (caregiving.com)
• A 15th Year Celebration (caregiving.com)

1. “What if your recipient does not have Alzheimers?? What if Grama is just spoiled and mean and spiteful to you and other family members. How do we handle this? She is 92. Sharp as a tack..Has all her marbles. She has been spoiled all her life. Was spoiled by our grandfather. Never worked a day in her life. Had a maid.. never shopped, did laundry.. nothing! Now she’s living with us instead of a nursing home. She was sleeping through her meals and insulin injections. That’s all.. other than that..she was taking care of herself for 3 years after our grandfather died. Now she’s in our home..and is treating me like her slave. She is abusive and complains about stupid stuff. I didn’t announce her meal at the table.. I didn’t turn her bed covers down.. I didn’t make her bed.. I didn’t put her pills in a cup that she doesn’t use anyway. She says’s I’m supposed to do these things for her! She doesn’t need a caregiver she needs a servant! I’m getting stressed.. I’m uncomfortable in my own house. My husband ..her grandson, is trying to help with this. He can do no wrong in her eyes.. by I do. I am the in law. But I am with her all day , everyday.. I do most everything for her. My husband helps a lot when he is home. When he is not home she can be quite mean. I am very verbal about not taking this from her. Yet she continues.. she is so spiteful and mean with her mouth. I don’t know what to do. If she goes to a nursing home and treats them this way she will be neglected and possibly abused. any suggestions..?? Need help”

2. “My mother is 85 and has been living with me for 18 year. I need help taking care of her, so so mean and mad all the time.”

We have articles with suggestions on how to manage situations with uncooperative carees here. (Please Note: We adopted the term “caree” in January 2010 so articles previous to that date use the term “care recipient.”) We also have a webinar on embracing your limits here.

I’d like to correct one assumption about a difficult caree receiving poor care in a nursing home: Good nursing homes provide good care. In a good nursing home, the nursing home staff effectively cares for residents with both difficult diseases and difficult personalities.

So, what suggestions can you offer to help your fellow family caregivers? What do you think about their situations? Please share in our comments section, below.

Resources

• Our next Caregiving Class starts tomorrow! Join us in “Finding Joy,” a four-week class to help you bring back what you thought went permanently missing: Joy. Learn more and register here. And, check this week’s issue of Caregiving Deals for a deal on our class. (Deal ends tomorrow!)

Elizabeth shared great reminders with us:

1. Keep choice. Allow your caree choices (when appropriate) in the day. And, remember that we can only choose happiness for ourselves. We can’t make it happen for others.

2. Avoid personalizing. As Eleanor Roosevelt said, “No one can make you feel inferior without your consent.” It always seem to be so much about and because of you. Really, it’s not. Let yourself off the hook.

We also spoke about the value of a caregiving responsibility. In caregiving, it can hard to see value because it can be hard to hear a result (i.e., “thank you, I’m so grateful for all you do”). In caregiving, the value is the means—what you do. Feel proud of how you manage, what you accomplish, how you delegate, when you advocate.

It can be hard to see all that you do and even harder to feel good about it. So, I’d love to know: How do you define success for yourself in your caregiving role? How do you feel your value? Please in our comments section, below.

Related Articles

• The Chemistry of Happiness (caregiving.com)
• Happy for Others (caregiving.com)
• Want To Be Happier? Avoid False Choices. (psychologytoday.com)
• How Do You Use Your Intuition in Caregiving? (caregiving.com)

This week, The New York Times toook an interesting look at the prevalence of hallucinations among hospitalized elderly patients. Pam Belluck, the article’s author, writes:

“The cause of delirium is unclear, but there are many apparent triggers: infections, surgery, pneumonia, and procedures like catheter insertions, all of which can spur anxiety in frail, vulnerable patients. Some medications, difficult for older people to metabolize, seem associated with delirium.”

Belluck followed up this article with a second, “Six Questions to Protect Elderly Patients.” Her six questions are really helpful as are the comments following the article, including this one:

“My late father, an anesthesiologist, said the quickest way to bring on dementia in an older patient was to give them demerol. He said it was a good drug, reduced pain, cleared quickly, etc. BUT it did often induce dementia in older people. He refused it when he was in the hospital even though he’d ordered it for thousands of patients. When my 88-yo grandmother was given demerol after a car accident, she insisted she was in a bad hotel rather than a hospital room and spent hours picking ‘bugs’ off her sheets and trying futilely to put on her pants which were actually a blanket. Once we persuaded the staff to ditch the demerol in favor of tylenol, she cleared and was fine in a couple of days. I just routinely tell people I’m allergic to it so they won’t give it to me. I’ve never had it, but don’t want to risk anything.”

I’m not sure how true or valid this advice is, but I will certainly take it under advisement.

How about you? How have you managed your caree’s hospital confusion? What tips can you share?

Related Articles

• Why Can’t Hospitals Do Better? (caregiving.com)
• Hospital Helps (caregiving.com)
• Quick Tip: Have a Bag Ready for Hospitalization (caregiving.com)
• Obama Requests New Hospital Rules for Patients Rights (caregiving.com)
• Updated Discharge Planning Guide Available (caregiving.com)

But, some days, well, you just find yourself wishing for a pink slip. If only you could just walk away from your caregiving role, you think, life would be so much better. And, worse, the wish to walk weighs heavily on your heart. You feel like the worst person in the world. But, every family caregiver, at least once, has hoped to be let go from caregiving.

When is it for you? Take our quick poll (below) and we’ll share the results on Saturday’s Table Talk show. (If you select “Other” please be sure to write in your answer.)

Related articles

• Sometimes, We Can’t Move the Clouds but We Can Shift the Sun (caregiving.com)
• Balancing the Happiness Scale (caregiving.com)

But, you already know that. You know that because of the resistance you receive when you try to bring in professional help.

This study was interesting to me because of the perspective it took. The study asked the question of care recipients: Are you happier receiving care from a family member or from a paid professional?

Asking just that question, though, overlooks an important factor: Can the family caregiver afford emotionally to be the only one who provides care?

I think it’s important to know that your care recipient loves that you are involved in care. But, it’s also important to remember that one person providing care to a frail elderly person with multiple chronic illnesses is a tall order. To go it alone is tough. Sometimes, you have to sacrifice a little of your care recipient’s happiness to ensure you both make it through the long haul of caregiving.

The bottom line: Take turns sharing the happiness. Your care recipient is happy when you provide care. You’re happy when you have the option to hire a professional to lessen your load. It’s a great way to keep a scale balanced.

Related Articles

Rather Than Fight, Be Flexible

Finding, Then Keeping, the Happiness

My Care Recipient Won’t Cooperate

Image via Wikipedia

On Thursday, I gave an eldercare presentation to a group of employees at a large corporation based here in Chicago.

At the end of the presentation, an attendee asked:

“What do I do about my mom? She insists on going to the doctor. A few years ago, she was seeing 24 doctors who all prescribed medications. I stopped that. She now lives in a retirement community so I know she has access to transportation, help and meals.

“But, every time I visit her, she wants me to take her to the doctor. So, we’ll go to the doctor, who will refer her to a specialist, and then we get back on the merry-go-round. My husband and I have been going through this for 25 years. We’re exhausted. What can we do?”

And, Maria, one of our site visitors, posted this comment on Gary’s blog:

“Mom is physically fine but always have something to complain about. I work 8-10 hours a day outside of the home and put in another 6-8 when I get home. How do I get off this treadmill. Once I am home (she live with me now-have an aide in the days), she expects me to answer at her beck and call. She is rarely pleasant and never seems appreciative.”

There’s nothing worse than the stomach-churning merry-go-round and treadmill. The best way to get off, I believe, is to set boundaries.

Let’s take the first situation. The family caregiver has gone above and beyond. She’s committed to helping her mom; it’s okay to set limits about how often. So, in this case, I suggested to the family caregiver that she tell her mom: “I understand how important your health is. I understand your need to go to the doctor. I support you. I’m available to take you to the doctor once a month. The retirement community has transportation that can bring you any other time you want to go.”

The power in the statement lies in affirming your parent’s needs while stating clearly how/when you can help and providing an alternative when you can’t.

In the second situation, a family caregiver is trapped by an expectation that she can make a care recipient happy. It’s just not possible. (Read: Can You Be Successful in Your Caregiving Role?)

In this situation, an appropriate boundary may be expressed this way: “I’m glad to see you when I get home from work. So, I’ll check to make sure you have what you need. Then, I’m taking a few minutes for myself and starting dinner. I’ll be available to you once dinner is ready. After dinner, I’m taking an hour for my own work while you watch TV. Then, we’ll spend some time together and I’ll help you get ready for bed.”

When the beck and calls come, simply say: “I’m making dinner. I’ll help you when I’m done.” Or, “I’m working. I’ll help you when I’m done.” “I’m taking a few minutes for myself. I’ll help you when I’m done.”

A care recipient with unrealistic expectations and overwhelming demands can make you miserable. As long as your care recipient is safe and has the care he or she needs, you can set limits. You have to give up so much in a caregiving role. You shouldn’t have to sacrifice your sanity. Boundaries can be your savior.

Resources:

Building Boundaries

Finding Your Voice, Defining Your Role

Finding the Right Words to Ask for the Help You Want

How Do I Deal with the Guilt when I Leave?

Caregiving Mantras: Making Your Healthy Perspective Your Healthy Realty

Adjusting Your Care Recipient to Your Changes

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• Ask Denise: What Happens When She Becomes a Burden? (caregiving.com)

I came across your website looking for some help for my mother-in-law’s niece, Alice.

Alice’s mother, 79, died on May 30, 2009. Now Alice must care for her 85-year-old father. He is very difficult and stubborn and physically hard to handle. He won’t go to the doctor because he says Alice wants the doctor to poison him. He cusses and is verbally abusive too.

Her sisters won’t help. What can she do to get him to the doctor? He behaves better when company is around, but misbehaves around her.

Where can I guide her for help?

Hi,

Thanks so much for writing–I’ll do my best to help.

I think the key is that Alice’s father responds better to others. That’s very common, although still so frustrating for Alice. So, who can influence her father in a positive way? Perhaps a pastor (or rabbi), family friend, or neighbor whom her father respects can assist by going with him to the doctor. My other suggestion is for Alice to contact his doctor and ask for suggestions. Can they recommend a physician who makes housecalls? What options can they offer to make sure her father sees a physician?

It also may be easier to find a way to get him help without actually going to the doctor. For instance, the local senior center may be an option. Sometimes, a senior center has a physician assistant or registered nurse regularly visiting the center who offer wellness check-ups with seniors. And, her local church or synagogue may have a parish nurse program. Parish nurse programs are great in that the nurses will make home visits. She also can call the local Area Agency on Aging (call ) and ask the staff also may have ideas.

“Coping With Your Difficult Older Parent: A Guide for Stressed-Out Children” by Grace Lebow and Barbara Kane, with Irwin Lebow is a book that may be helpful for Alice.

But, nothing’s working. You and your care recipient are at odds. And, the odd-makers seem to be betting against you. Caregiving is getting the best of you.

It might be time to look for more help and help from a home health agency may be just the ticket. We’ve come up with reasons to use outside help:

–when you take your care recipient to physician appointments. Wouldn’t it be nice to drop off your care recipient at the front door of the medical building so the home health aide can assist him or her inside? Just think, no more slooooow walks from the parking lot, no more maneuvering a wheelchair through a door that doesn’t (but should) automatically open.

–when your care recipient’s physician changes the care regime. For instance, your mother’s physician wants her to forgo the incontinence pads for a few days so that a rash can heal. You know how tough getting your mother to the bathroom is. This is a great time to get some help.

–when your care recipient moves into a period of difficult behavior. Sometimes a new face and a different voice can work wonders in calming your care recipient.

–when your care recipient is recovering from the flu or a cold. Rather than wearing yourself out trying to do everything, enlist the help of a home health aide until your care recipient feels better.

–when your laundry seems to control your life. Just one day without laundering soiled sheets. Wouldn’t that be nice?

–when your sister wants to go out for coffee to complain about her youngest daughter; it’s so great to hear about someone else’s problem for a change.

–when your care recipient suffers from cabin fever. A young face visiting three times a week for a few weeks to help with personal care and housekeeping may put the spark back into him or her.

–when you’re working overtime during your company’s busy time. With a home health aide in the evening, you can work late without worrying (too much).

–when you’re expecting company for special events or holidays. An extra pair of hands may take the air out of your elevated anxiety level.

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To find a home health agency in your area:

1. Call the ElderCare Locator at 1-800-677-1116; you’ll be referred to your local Area Agency on Aging, which can tell you about local home care agencies.

2. The National Private Duty Association consists of home care agencies throughout the country. To find a member in your area, visit the association’s web site at http://www.privatedutyhomecare.org/.

3. National Association for Home Care and Hospice offers information about using home care agencies and an agency locator.