Archive for March, 2010

Cultural Caregiving: Where Family Caregiving Is Sometimes Expected

Different cultures perceive family caregiving in different ways. For some, being a female means you will be expected to care for your elders. For others, it’s a family affair–everyone pitches in, but it stays primarily in the family. This is admirable–but many progressive families find that this model no longer suits their lives–or needs. It’s not that they don’t love their moms and dads, it’s that it takes two incomes to keep the family going–and women have fought long and hard for higher education and working opportunities. Cultural caregiving expectations keep them from pursuing their dreams.

Nadya is 32. Her family is from India although she has lived in the United States since she was five. She’s married, has two children, and is well educated. She works at the University of Arizona and so does her husband. They juggle their work schedule to cover the care of their young children. Her parents, about to turn 70 are beginning to hint that it’s time for Nadya to consider their care needs.

“I feel a family responsibility. In our culture, my parents going to an assisted living home or hiring outside help is just not heard of–they would be embarrassed and their peers would be shocked if this were to happen. They want to move in with us and even say they can help with our children. That sounds great, but our house is small–and we have our system all worked out. I love my father, but we don’t see eye-t0-eye, and this would cause many problems. Still, I feel that I have little choice in the matter–and would be considered a “bad” daughter if they don’t move in.

How to talk to your family about their caregiving years:

  • Talk often, when it’s natural–in the car or while you’re doing chores. Chip away at it slowly.
  • Be sensitive to their cultural expectations. Listen and realize that “losing face’ might not be a big deal to you, but it is to them.
  • Do only what’s necessary when it comes to caregiving. Some families expect too much–you may have to be the one to hold up the wall. Opt for safety and true health needs.
  • Try to delay the big move–if that’s what you’re concerned about. Help them find alternatives so they at least give it a try.
  • If there’s no way around it, make the best out of it. See how it could benefit you. Laugh at the crazy times, forgive quickly and don’t get hung up on the small stuff. Sometimes life surprises us–you might find some unexpected gifts in the arrangement.
  • Use the time to find out about your heritage. You only have a limited window before that generation is gone–and you–and your children will glean so much from finding out about your family’s legacy.

Sometimes family expectations can seem too much, and there’s a time to speak up and hold onto the changes you’ve earned and fought for–and there’s time to embrace your wild and crazy family–and make the best of it. Only you know when–and what’s right for you.

March 24, 2010 at 11:04 pm Leave a comment

Single and Caregiving: Protect Your Finanicial Future

Divorced, widowed never married, a 20 or 30 or 50 something caregiver…being single and caregiving poses a few unique problems. For one thing, it’s all up to you and this sense of responsibility and isolation can really get to you. Your family members might expect you to be the one to sign up for the job–after all, you have no kids or spouse.

You may feel obligated, especially if you’re the only child or grandchild. Everyone, including you may think it’s a good idea financially to move in–only you may find yourself trapped, unable to date, go out with friends. What began as a way to help out those you love may have turned into a situation you wonder how you’ll ever get out of. 

The price of caregiving can effect your health and your finances.  

national study on women and caregiving found some startling work related issues:  

  • 33% of working women decreased work hours
  • 29% passed up a job promotion, training or assignment
  • 22% took a leave of absence
  • 20% switched from full-time to part-time employment
  • 16% quit their jobs
  • 13% retired early

Caregivers cope. We love fierce and long, and that’s to be admired. Oftentimes, single caregiver have to work–there is no other choice, but their caregiving responsibilities can put their jobs and financial security at risk. If we put ourselves at risk–financially or health-wise who do we expect to care for us? 

Simple Ways to Protect Your Financial Future: 

  • Educate yourself about finances. Get some books from the library containing sound financial advice, listen to audio books in your car and visit websites that help you orgaznize and keep track of your finances. Take pride in knowing where your money is going.
  • Refuse to be the family’s easy-fix. While you may seem to have free time, you are not obligated to be a loved one’s soul caregiver. Look out for your own future and demand family involvement.
  • Don’t take your frustrations out on your loved one who needs caring for–not if they’re not the ones demanding your 24/7 devotion. Don’t complain to them. Go to the ones who can help make a difference.
  • Utlize your community elder-care resources. Check on Meals on Wheels, ask your church, your Council on Aging. Ask for help. Accept that help, even when they don’t do things your way.
  • Make noise. If you feel “dumped” on, then speak up. Call a family meeting and inform them what you can–and can’t do. Don’t fall for guilt trips. Make wise decisions for yourself.
  • Find a co-caregiver. One person in your family should feel your dilemma. Befriend that person and begin to brainstorm together for solutions.
  • Look and plan ahead. Invest in a 401K. Have an emergency savings. Save for a vacation. Work on short-term and long-term goals. No one will look out for your future but you.
  • Value your health and your well-being.  Walk every day. Don’t neglect your friends. Do what you can to care for your loved one and there will be times of sacrifice, but resist living every moment for someone else’s care–it’s a well you can’t fill.
  • You’re going to have to live with the fact that you can’t do it all. You have to place yourself high on the priority list. Refuse to be bullied or guilted into caregiving. Do what you can, what you know is right, and let go of the rest.

Hopefully you have many more decades to live. If you haven’t planned and saved for those decades, how will you live? As cold-hearted as it sounds, it’s your responsibility to protect your health and financial future. No one can do that for you. Being single and caregiving  means you might have to work even a little harder to maintain your boundaries.

Imagine yourself at 75…what does your future look like? It starts today.

March 22, 2010 at 6:40 pm Leave a comment

How Do You Tell People You Have Alzheimer’s?

You get the diagnosis–Alzheimer’s or some other form of dementia. You and your spouse are reeling. You know you’ve been forgetful, off your game, confused…but you never thought…this.  It’s been weeks and you can hardly say the word out loud. You know that you’ll have to tell your adult children, perhaps a few close people, but how? You don’t want to be pitied. You don’t want to think about what’s up ahead. You don’t want people to treat you differently. It’s easier to hide it than to talk about it, but how long can that go on?

Perhaps we should take a lesson from history and remember how former President Ronald Reagen delivered the news–by letter. I’m not sure how he told his children, but this is how he told the world. He did it with dignity and grace. He did it all at once, and although the news waas devastating, his eloquent style of delivery seemed to buffer the blow and not make him appear weak or small.

From his example we can glean a bit of insight. He delivered the news via letter/announcement. His words were touching and eloquent–and yet he appeared strong and brave–and humbled.  

How Do You Tell People You Have Alzheimer’s? 

  • Decide who you should tell first. Start with closest family members and friends.
  • Take some time to grieve, reel with anger, question and doubt–with your spouse. All these emotions are natural and the only way to deal is to work through them one by one.
  • When it’s time to tell others and if it’s too hard to say, then write a letter or make a video. Let them read it privately so they can deal with their own initial shock, but have a pre-planned time to meet and talk so they don’t rush you–or avoid you.
  • Have some information available for them. Go to the Alzheimer’s Association site and print out some basic information that’s easy to understand. Try to anticipate some of their questions–what stage are you in, what’s it going to be like, how long can they expect for you to be “you,” and perhaps a general plan of what you might consider as far as help and future living arrangements when the time comes. Assure them you’ll not move too fast or make hasty decisions.
  • Get the news to that second circle–friends, colleagues, extended family in a timely manner. News spreads and it’s best heard from you, not a second source. Keep in mind that their reaction has a lot to do with themselves, not you. All of us tend to go to the “what if it were me” place. Don’t get sucked in by their emotions.
  • Create a circle of wisdom to surround you. Your doctors, your local Alzheimer’s Association, elder-care specialists, an attorney or someone who will handle your legal matters, and don’t forget your clergy or therapist. Ask them to be your “advisory board” and request that they be available for counsel and support as you and your spouse need it.
  • Get your affairs in order. Update your will, put financial matters in your spouse’s name or some other person who you can trust. Create a living will and other advanced directives. Do this not because you’re afraid, but as an act of love for those you love–so they’re not grappling with “what would Dad want” as they’re also grieving.
  • Begin a video-tape or journal. Share as much of “you” with those you love now. Leave little notes, words of advice, recipes, how to change the oil on the lawnmower, how to back-up the computer–little things that can help make life easier and also mixes in a bit of your spice and flavor. Check into ethical wills. Preserve the best of you.
  • Live! Yes, it’s a tough disease, but try not to look too far ahead. Gather your loved ones near and appreciate life today. Go for a walk with your grandchild, go fishing with your best buddy, and tell those you love how much they mean to you.

How you tell people can well determine how they treat you in the coming months and years. Right now, you have some “say” in all this. Write down what you want, who you are, and what you value. Make preparations so that your loved ones aren’t left wondering, and share with people what you think might work best for you in terms of future care. Leave a legacy of gratitude, because in the end, it’s how we respond to whatever life throws at us shows the world who we are.

March 18, 2010 at 3:49 pm Leave a comment

Reading Aloud, A Comforting and Connecting Caregiver’s Gift

Poems, nursery rhymes, hymns,  patriotic songs, Psalms, Ecclesiastes, the Torah, Shakespeare, James Patterson or Robert Ludlow’s adventure books, Agatha Christie and W.B. Yeats…the list could go on and on. Babies to centenarians enjoy the lyrical sound of a voice reading aloud. Alzheimer’s studies show the brain light up when a poem is recited. It taps into our childhoods, our histories, our loves, our faith. We begin to repeat the familiar words thought long forgotten. What a comforting and connecting caregiving gift.

As my mother began to forget how to read and write, I would sit next to her at the end of the day and take my Daddy’s well-worn Bible and read her the Psalms. She snuggle down in the bed and I watched her arms and legs begin to relax. Her mouth would move. She knew these words, the cadence in my voice. Her face softened.

It took me back to my childhood when my mother was the reader and I was the listener. It took me back to my faith, to Sunday school, to gold stars for memorizing a passage, to the love of language and the poetics of old English. I wanted to hear the “shall’s” and “beholds.” Tell me the story of Noah, of great wars with crushing defeats and cheering victories.

I would open an old hymn book and read the words of Amazing Grace. We recited the Star Spangled Banner in the car. I sang her the lullaby’s she sang to me as a child. I found that it soothed all we couldn’t talk about. As Alzheimer’s continued to ravage her mind and she forgot the name of simple objects, of even knowing who I was to her, she still responded to Robert Frost’s line, “and miles to go before I sleep.”

I learned to let go of what I couldn’t keep. We lost parts of my mother, I can’t deny that, but we didn’t lose all of her. We still had our poems, Psalms, and songs.

March 12, 2010 at 7:40 pm Leave a comment

Why Do People with Alzheimer’s Mumble, Babble or Moan?

“I visit my grandfather in a care home every other week, but now that he’s been transferred to the memory disorder unit, I hesitate about bringing my kids. Other patients there mumble, babble or moan, and I feel it would upset my children (ages 8, 10, 14). My grandfather doesn’t do this, but maybe he’ll start. Does everyone with Alzheimer’s eventually do this?”

A woman in her early 40’s asked me this question at a care talk recently. Since this type of Alzheimer’s behavior tends to occur in the later stages, many home family members don’t experience this at home in the beginning to middle stages of Alzheimer’s and don’t know to expect it.

I talked to my friends at the Alzheimer’s Association and here’s an easy description of what’s going on:

 There are 5 stages of Alzheimer’s/dementia–stage 1 being most severe. Babbling, mumbling, and moaning usually occur in stage 2 or 1 as the brain deteriorates and most language ability declines.

At this level, brain waves fall into “grooves” (I’m paraphrasing here) and repetitive habits, patterns loop over and over and are almost comforting. Some patients repeat words, other pat or tap or knock. Others like to touch silk or something knobby with texture. Some pace, bang their heads, or yell. Part of it is pent up energy and stress. Part of it due to the profound isolation and lack of stimulus that come with the disease and being sectioned from the rest of the world. Many neurological diseases share these behavioral traits such as severe OCD and schizophrenia.

An excellent tutorial on dementia/Alzheimer’s that’s clear and concise can be found at  North Carolina Alzheimer’s Association site (click here) 

This presentation by Ms. Snow includes photos of the brain in the various stages, descriptions of different of dementia, including Alzheimer’s, each stage, and how to “reach” your Alzheimer’s/dementia loved one. Honestly, this one document tells you most of what you need to know about the disease without dumbing it down–or drowning you in too much medical jargon.

While your loved one may not be able to communicate with you at this stage, they can still know your presence, send your mood by facial and body gestures, and respond to touch. This is the time when being their care advocate it crucial. While it’s painful to see someone you love in this state, they need you to protect them, be their voice, and make sure they are not in pain or neglected.

I encouraged this sandwich generation mom to sit with her kids and explain in simple terms what Alzheimer’s does to the brain, and why people at this stage act the way they do, and that it’s not something to be afraid of–it’s a medical condition. It’s not contagious, and if they’d like to visit, they are welcome–and the minute they want to leave, you’ll leave. Give them the option.

By demystifying Alzheimer’s/dementia, we help educate our communities. We don’t have to be afraid to visit our loved ones. By understanding what’s happening and how we can reach them, we bring the world a little closer together. One family at a time.

March 10, 2010 at 2:13 am Leave a comment

If Your Elder Gets the Flu

No, I didn’t get a flu shot. Now I wish I had. I can’t imagine if I were 85 and had other conditions what this would be like. The flu is dangerous for our elders. It can lead to pneumonia and it can be fatal. But even when caregivers are prepared, our elders can still get the flu. What you do could save their lives.

The CDC ( Centers for Disease Control) reports that more than 200,000 people will be hospitalized this year due to the flu–36,000 will die.

How to avoid the flu:

  • Flu shots–at the beginning of the flu season is wise
  • Avoiding highly contagious areas during the height of flu season–doctor’s offices, grocery stores, day cares, etc.
  • Not only washing your hands for at least 30 seconds (sing happy birthday) but also wiping down highly contagious surfaces such as phones, remote controls, and door knobs.

Flu Symptoms:

Cough (can be a dry cough or with yellow green phlegm, aches, chills, fever, headache, and sometimes diarrehea or nausea.

The problem with the flu is that it opens the gate for other illnesses and because the body’s immune system is already under attack. The flu can lead to sinus and ear infections,  respiratory infections such as bronchitis  and pneumonia, to name a few.

Dr. W. Paul McKinney, associate dean of the School of Public Health at the University of Louisville, explains that viral pneumonia is of particular concern. In our elders we also have to be aware of congestive heart failure, chronic lung disease, or renal failure as well as something as simple as dehydration that can be dangerous for our elders. 

If your elder does get the flu:

  • Go on high alert. Don’t miss a symptom. This is the time as a caregiver when you’ve got to be on your game. Consider wearing a mask and glove and wash your hands like crazy. Make sure they cover their mouths when they cough or sneeze.  You might want to quarantine them to one area of the house to try to keep the germs contained.
  • Ask your doctor if they should take a flu inhibitor–several brands are available that will diminish the symptoms.
  • See the doctor. While a healthy adult may just have to endure the flu, an elder should be checked for secondary symptoms and monitored closely.
  • Disclose all medications and allergies.
  • Push the liquids.
  • Have a back up person in case you get sick.
  • Don’t forget to be encouraging and thoughtful–your elder feels horrible (trust me, I know) and might be scared. Placing a candle on their dinner tray, rubbing their feet, or tucking them in at night lets them know you care.

Being a care advocate means being ready–and although you might not be able to prevent your elder from contracting the flu, you can do all you can to protect them during the flu season.

March 4, 2010 at 8:06 pm Leave a comment

Gimme a Break! Ten Tips to Help Caregivers Plan for Respite Care

Are avoiding respite?

Are you worried you won’t find a good fit?

Are you worried your elder-parent won’t take their meds or find other ways to rebel against you leaving?

Are you worried the care person won’t do all the little things you do?

Caregiving is all-consuming. You’re on call 24/7. You run errands, plan meals, are in charge of meds, help with rehab, talk to doctors and insurance, deal with behavior issues, sundowning, and the list goes on and on. You know you need a break, but even planning a break takes time and energy.

10 Tips to Help Plan your Respite Time Well:

  • Start planning at least 2 months out
  • Make reservations–something you can’t get out of easy
  • Start by asking a friend or relative–someone your care buddy already knows
  • If you do need outside help, start by contacting your local care resources–many have volunteers
  • Invite the care person over for at least 2 visits so your care buddy gets a chance to feel comfortable
  • Make a clear and detailed list–but don’t go crazy.  Focus on the main things–medication times and amounts, safety concerns
  • Don’t be surprised if your care buddy tries to sabotage your break at the last-minute. Don’t let them. Unless it’s a true medical emergency, you should go. Even if they don’t seem happy–some of that is just for show.
  • Don’t be surprised if the first time you take a respite you don’t know how to relax. It’s been so long your mind and body doesn’t understand what to do. Don’t cut your trip short. In time, you’ll learn how to kick-back.
  • Resist the urge to micro-manage. Call only once a day–they’ll call you if they need you. Don’t ask for details. Trust the important things are getting done. Let go of being a caregiver for just a few hours.
  • Plan your next respite time soon after. If you’re caregiving long-term, these regular breaks are a necessity.

The great thing about respite is that once you get the hang of it, it gives you something to plan for and look forward to. For a few days you get to reconnect with other aspects of your life. It even makes you a better caregiver. You come back refreshed and with something new to give. And it might even surprise you that your care buddy might appreciate the break (from you) as well.

March 3, 2010 at 9:00 pm Leave a comment


This Blog

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.

Brain Fitness Twitter

Error: Twitter did not respond. Please wait a few minutes and refresh this page.