Archive for August, 2009

Nighty-Night: Bedtime Rituals for Caregivers

As challenging as it is for caregivers to get their day off to a good start, it’s even more important (and sometimes difficult) to create bedtime rituals that help you and your care buddy fall and stay asleep. My mother had sundown syndrome for much of the last two years of her life. She was living with my family and me, and it seemed that as soon as it hit six p.m., my mother came alive. Not only alert, but downright ornery.

I did my research and found a few ideas that would help, but I also found that creating a bedtime ritual both of us could depend on triggered our minds and bodies to begin to relax. Sleep deprivation is downright dangers when it comes to driving and dispensing meds, not to mention it’s unhealthy and can lead to all kinds of health problems.

Start early in the day, and even prepare for a good night’s sleep.

Bedtime Rituals for Caregivers:

  • Create a peaceful room.Declutter the bedroom. Even if you can only box items up and deal with them later, create a serene environment. Consider moving the TV out of your bedroom if you’re using it as a crutch and staying awake an extra hour. An hour’s sleep is a big deal!
  • Make it dark. If you can’t sleep, then make sure your room stays dark all night. Get a motion sensor nightlight that will stay off unless you get up to make a potty run. Invest in light blocking curtains or shades.
  • Consider a porta-potty for your care buddy. If your spouse/parent can get out of bed themselves, then don’t risk them falling in the middle of the night. Rent or buy a porta-potty and place it next to the bed. This practical item can make life so much easier.
  • If you have to get up, then build it into your routine. If you know your care buddy needs to potty in the middle of the night, then plan for it. The quicker it is, and the more regular it is, your body will adjust and be more likely to allow you to fall back asleep.
  • Nix the caffeine and sugar. Now, I’m a coffee-junkie, so I limit myself to two cups in the morning of the real thing, and then I rinse out the pot. Curtail all liquids after 7 p.m. Sugar addiction is a cul-de-sac. You eat, you crash, you eat again. Replace sugary treats with diet jello, and sugar-free ice cream or sherbert. Even better, reach for a piece of fruit or air-popped popcorn.
  • Don’t fall for manipulation. My mom was worse than any three year-old when it came to bedtime excuses. I had to be firm and consistent.
  • Does your care buddy need a care buddy? My mother admitted to me that she didn’t want to sleep alone. She shared her bed with my dad for 52 years. I bought her a body pillow for comfort, and that helped. Your loved one may like a teddy bear or some other form of comfort.
  • Create a night-time ritual that makes your loved one feel safe and loved. Prayers, a song, listing 3 things you’re grateful for, talking about what you have to look forward to the next day, tucking in the covers–all these gestures prompt our bodies to relax. It’s not just children that need night-time rituals. We all do.
  • If you’ve tried everything under the sun and your nights are still crazy, then do the best you can. Sometimes all the hints and all the rules don’t help. It’s a battlefield and you have to get by any way you can. Sleep when you can and make your days as easy as possible. If you hit a bad jag, then hold on, it won’t last forever. 

You’ll get to where you look forward to your nightly rituals as much as your loved one does. Ending our day with a sense of peace and closure is a way to honor ourselves. Forget falling asleep on the couch. Take a bath, put on your jammies and read a story together. Night-time routines make for great memories–at any age.

August 28, 2009 at 2:27 pm Leave a comment

Start Your Day Out Right: Create a Caregiving Routine You Can Live With

Sometimes while caregiving my mother (who had Parkinson’s and Alzheimer’s) I felt that my time was not my own.

When a person feels they have no control over their day, it’s unsettling. Both my mom and I felt scattered, and sometimes lost because we didn’t have anything to look forward to other than medical-related activities. It’s not that we meant to plan our lives around doctor visits, home health care visits, medications, or catastrophes such as a fall, but it sure seemed that way. I finally realized that I would most likely get the day I planned to have.

So I started making a plan. 

Ask yourself (and your care buddy) a few questions:

  • What’s a good time for you to get up and get busy?
  • How much private time do you need to exercise, journal, shower–whatever helps you feel you’re off to a good start?
  • What time would your care buddy (mom, dad, grandmother, spouse, etc.) like to get up?
  • What’s the ideal time to start their medications?
  • Can you compromise and start your day at a time that’s agreeable for both of you?
  • Do they move better with some stretches?
  • Does your loved one have a long-standing morning routine they’d like to continue? Prayer or meditation? a favorite morning program? A call to a dear friend? Be sure to incorporate this.
  • What’s a breakfast that’s good for both of you?
  • How can you make this first meal pleasant and upbeat for both of you?
  • Can you include music, radio, crossword puzzles, sodoku, a quick stroll outside or something else that’s stimulating into your morning routine that also helps set the mood of the day? Be sure to stimulate the body and the brain.
  • Is it best to schedule doctor appointments or home health care in the morning hours–or should they be scheduled later in the day to ensure continuity?

There’s nothing better than making a plan, looking forward to something and then getting it. Start with a morning routine, but don’t go any further–not yet, anyway (sometimes I go overboard and plan too much and then get overwhelmed or let myself–and others–down).

 Getting off to a good start that doesn’t focus on aches and pains can change your entire day. Yes, it’ll take up a good portion of your morning hours, but you and your loved one can feel so settled and so cared for by getting off to a good start that you’ll make up for this time investment later in the day.

August 26, 2009 at 1:31 am Leave a comment

Great Ideas to Help Our Elders Stay Sharp

Our elders are no different than we are–every human from babies on up need to stay physically and intellectually stimulated. We crave it, even when we don’t realize we do. Caregivers and their loved ones are susceptible to depression and lethargy. Why? We see less people and we move less–unless we pay attention and make a special effort to stay active and sharp.

Great Ideas To Help Our Elders Stay Sharp:

Get information in. Whether you’re a book reader, enjoy audio books, watch the news, read the newspaper or magazines, or enjoy surfing the ‘net, continue to bring information into your life–for you as a caregiver, and your elder. It doesn’t have to be just the news or politics–branch out a bit and pursue some interests you’ve dabbled in before. Join a history-based chat room, or buy Archeology Today or some other magazine that interests you. Even if reading tires your elder’s eyes, then read to them and discuss it–get into a friendly debate–it’s good for the brain to get all worked up. Don’t get hung up on differing political or religious views, just enjoy the discussion and watching come to life. Those neurons will start an electrical storm in the brain and that’s a good thing.

Ask questions. Our elders have a wealth of wisdom and experience we can learn from. Ask them about the economy. Ask them what it was like during and after the depression. Ask them how they got through a difficult time in their career, or in their marriage. Our elders have so much to give–and even if you don’t agree with them–who cares? Listen and realize they’re living history.

Play games–all kinds. Get your kids and your grand kids in on the fun. Before television, people were really into cards and board games. Now there are great computer games and the Wii is great for all ages–(my mother-in-law is the best bowler in the family and she’s getting ready to celebrate her 80th birthday). Horse shoes or dominoes, checkers or charades–it doesn’t matter what game–it matters that you’re together. One of my favorite pictures is of my daughter (she’s about 9), my husband and my mother playing a kid’s game called “Pretty, Pretty Princess.” All of them have on crowns, rings, and beads–and it’s such a sweet picture–one I’ll always treasure.

Stay active. Activity isn’t necessarily exercise. Dance or walk around the house. Dancing combines music with movement, and that’s a winning combination that will lift your spirits and raise your heart rate. Walk to the mailbox together. Go shopping just for a stroll (pick a smaller store if walking long distances is a problem). Throw the ball to each other in the house. Do a yoga DVD together. Don’t feel like it? The feeling comes after you start…not before. Do it anyway. It’s good for you. You need it. Your elder needs it. Don’t take “no” for an answer from either of you.

Shake up the routine.Our brains get so accustomed to the same ole’-same ole’ that it runs on automatic pilot. Face it, most of us in these modern times are just plain bored with our predictable lives. While your elder needs structure (for meds, sleeping, etc.). you can still vary the day in small ways. Take a different way home from your errands. Try a different grocery store or restaurant. Go for a drive–remember when people used to just get in their cars and take a drive on Sunday afternoons? Why not find the prettiest-nature route near you and go for a 20-30 mile ride? Talk, look out the windows and just relax.

Socializing is good for your brain. Invite someone over who hasn’t been to your house in a long time, or perhaps never before. Serve store-bought cookies and store-made lemonade–no one will care. Just having someone new to talk with lifts your spirits. I remember how much perkier and together my mom acted when one of my daughters brought home a new boyfriend. She had a new “victim” to tell all her stories to–and we all joined in with our favorite family tales. (We’re like show-and-tell). Even though my mom had Alzheimer’s and Parkinson’s, she’d smile and laugh when a “young gentleman” took the time to talk with her for a few minutes.

See? It’s not so difficult to stay sharp–and you need it just as much as your mom or dad (or grandparents) do. Staying sharp is just about having a great life.

August 20, 2009 at 5:49 pm Leave a comment

How to Share Caregiving and Not Ruin Your Sibling Relationships

Caregiving isn’t meant to tear your family apart, but sometimes it feels like it might.

 Here are some of the concerns caregivers share with me at conferences:

“I’m so angry at my brother. He won’t lift a finger to help.”

“Both of my parents have Alzheimer’sand need caregiving, but my sister doesn’t see it.”

“Our oldest brother is the Durable Power of Attorney, and he controls the finances and won’t share any information. We’re not after our parent’s money, but we have a rigt to know what’s going on.”

“I’m so disgusted with my siblings over how they’ve acted about our parent’s will that I want nothing to do with them.”

How do you notlet caregiving issues go this far?

  • Talk early and talk often.Don’t wait until your parents are in need of daily care to begin to discuss your caregivingoptions. By then, you’re scrambling. Run different scenarios. Speak up. If you want to be the one who coordinates or does the day-to-day care, then say so–but insist that the other siblings pitch in–financially, emotionally, helping with household duties or giving you adequate respite care. If you don’t want to manage your parent’s physical care, say so! You do have a choice–but you need to recognize that there is some level of responsibility involved–and you can offer other alternatives.
  • Accept right now that no one is going to do things your way.Your siblings (like everyone else in the world) have an opinion, and most likely, it won’t be exactly like yours. Respect this. Listen and don’t overreact. Go into caregiving with an open mind.
  • Respect each other and vow to stay a family. If your family’s intention is to work through issues that arise, you’ll be much more likely to come to a place of compromise and understanding.
  • Keep the “main thing” the main thing. Your goal as a son or daughter is to make sure that your parents are cared for properly–that they’re safe, honored, and their physical and emotional needs are met to some extent (you won’t be able to do it all, I promise you that). If the “main things” stay front and center, then you’re on track as a family. Yes, there will be lots of gaps and loop holes, but if safety, health, and proper care get met–you’re doing great as a family. How these goals get met are negotiable.
  • What would your parents want? Do you really think they want their care to be the demise of the family? I doubt that. Even dysfunctional families (meaning all of us) want their children to get along. Try your best to honor the fact that your parents want peace–for all of you. Forgive. Try again. Try to communicate clearly. Take a deep breath. Bite your tongue before you say something destructive–and remember that most people are just scared and hurt more than mean and selfish.
  • When all else fails (yes, there are a few mean and selfish people in the world), then dig deep and do what’s right. Just make sure you’re not myopic and stubborn. It’s easy to believe you’re so right. When in doubt, ask a mediator to step in and give everyone some perspective.

I didn’t have any siblings to help out, but I’ve seen so many people hurt over the issue of sibling caregiving than over caregiving itself. Perhaps it’s so hard because we expect–and hope–that caregiving will bring us together, not tear us apart. But as in all of life, it’s a choice two people must make.

August 18, 2009 at 9:03 pm Leave a comment

Why Lack of Sleep is So Dangerous for Caregivers

Lack of sleep is dangerous for anyone–but caregivers are particularly prone to sleep deprivation.

My mother had Alzheimer’s and Parkinson’s and she developed Sundown Syndrome–as the sun set, my mom got  perky. Perky isn’t the right word–agitated is more accurate. It made for some long and crazy nights. My mom was also in and out of the hospital, and each time our routine was disrupted, so was our sleep. Many, many days I walked around feeling like a zombie. Caffeine became my all day companion–from coffee to diet sodas, and many days were just a blur.

Why lack of sleep is so dangerous:

  • You’re most likely having to drive to get to doctor appointments and errands
  • Research has found that if you drive after being awake for up to 17 to 19 hours, you drive as if you are legally intoxicated–as if you have a blood alcohol level of .05 percent. The same study found that “16 to 60 percent of road accidents involve sleep deprivation.”
  • As a caregiver, you’re in charge of dispensing medication. The Institute of Medicine  reported that an  estimated that “44,000 and 98,000 people die in U.S. hospitals each year due to preventable health care errors.4 Even greater are the numbers of preventable errors that do not result in death, but potentially lead to acute or chronic illness, injury, and/or disability.” Those are statistics for doctors and nurses–but as a caregiver, your risk of giving the wrong medication or wrong dosage is similarly high.
  • Your own health is at at stake. Five dangerous risks are directly related to sleep deprivation: obesity, cancer, heart disease, diabetes, and accidents. That’s quite a list. Personally, I found that I was using food to wake me up–I felt that if I ate something, I felt a surge–(most likely a sugar high), and it was comforting. I was snacking all day–and night. I gained close to 30 pounds in two years.

I can’t give a cure-all because sometimes you just have to pull the all-nighters, and it may take awhile to get you and your loved one’s sleep habits worked out–so what to do in the mean time?

Starter Steps to Better Sleep for Caregivers and Loved Ones:

  • Become a creature of habit. Put you–and your care buddy on a strict routine. Get up and go to bed at the same time. Make your bedroom dark. Don’t eat, watch television, or work on your laptop in the bed. Beds are for sleeping (and other fun stuff).
  • Get respite care help. Don’t try to care-give alone. Ask for help. Ask a neighbor to sit with your loved one so you can take a nap or take a bath. Arrange for respite to come for the weekend. I know you might not be able to afford to go anywhere, but can you afford not to? Is there any way for you to get away and have at least 24 hours to recoup? If you have a relative, insist they pitch in. Have them come to your house to watch your mom/dad, and you go sleep at their house. Don’t take no for an answer. Ask for help and expect to get it.
  • Give up being perfect. Opt for the nap rather than doing dishes. Don’t over-schedule your days. Be easy on yourself. If you lose your temper, say you’re sorry and let it go. Simplify your life and your schedule as much as you can.
  • Don’t neglect your own health care. Take those vitamins. Make your doctor appointments. I know you’re tired of all thing medical, but don’t put yourself last–go see your gynecologist, get that pap smear, see the dentist. Prevention beats winding up in the ER.
  • Hold on. It won’t last forever. Get help. Make yourself a priority. Find ways to have mini-breaks throughout the day. Laugh–or cry–as needed. Both a valid forms of release. Realize that you can only take so much, and one day, you may have to make a different care decision. Give your “future self” permission to do that when it’s time.

August 13, 2009 at 8:36 pm Leave a comment

Should I Consider Hospice?

For some, hospice is a scary word—they think it means the end is near. For others, the word, hospice represents a time of peace and support. Why the discrepancy? I admit I was on the apprehensive side of the word. My mother was 92, had Alzheimer’s and Parkinson’s, and I was her primary (and basically only) caregiver.

The word “hospice” made me feel that my mother was dying and I was giving up. Not true.  Hospice isn’t a place or even an organization–it’s a way of thinking–it’s about honoring the time you have. Caregivers struggle with this decision because for many, they feel as if they’ve failed. Hospice helped me understanding that my mother’s passing was natural. I began to realize how very important this time in our lives was for all of us–and that it wasn’t necessarily happening tomorrow and my mother’s life could still have quality.

Misconceptions about Hospice:

  • There’s only one hospice and it’s throughout the country
  • Only a doctor can recommend a person for hospice
  • Hospice means you’re dying within 6 months
  • Hospice means you won’t be able to take your normal medications
  • You have to pay for hospice services
  • You only need hospice if you’re planning on dying at home
  • You only need hospice if you’re planning on using pain medicaiton (such as with cancer)

None of these are accurate. Let’s break them down:

  • There are many types of hospice. Some are public and not-for-profit, and some are private. Medicare actually covers the cost of public hospice and if you’re over 65, you’ve already paid for these services.
  • Anyone can recommend someone for hospice. You can call your local hospice for yourself, your spouse, or for a neighbor. They have doctors who work closely with hospice who can assess your situation.
  • Hospice does not kick you out if you haven’t passed away after six months–or a year. Your situation is reassessed and the best care is recommended–which may include continuing with hospice if you still have a life-limiting condition.
  • You may continue with your medications–for Parkinson’s, cancer, whatever diseases you have. The cost of these medications are often picked up by hospice.
  • Most hospice services are availble to everyone with no additional costs, but do realize that all hospices are not created equal and they vary as to what they can offer you. Many large cities have more than one kind of hospice, so be sure to ask what services they have and if there are any fees attached.
  • Many hospices have hospitals for those who need additional nursing and medical support–or if you do not wish to die at home. Again, this varies so be sure to ask ahead of time.
  • Yes, hospice can help you with pain medication, which is called palliative care–whether you choose to stay at home or in a hospice care center (hospital) or they can also assist you if you’re in a nursing/care home or a traditional hospital.

I hope this helps you make a more informed decision. After I got over the initial “word shock,” I found it a relief to have hospice support not only my mom, but my family and me. They offered physical care, medical services, bereavement counseling, and faith support. I didn’t feel alone, and I knew that my mother was getting the care she needed. Most of all, hospice gave us time to be a family.

August 13, 2009 at 1:12 am Leave a comment

Friends Don’t Let Friends Care Give Alone: Cultivating Friendships in Your Caregiving Years

The easiest thing in the world to do (as a caregiver) is to isolate yourself.

The hardest thing in the world to do (as a caregiver)  is to find the energy to find new friends or keep a friendship going.  It may feel hard, but the benefits are well worth your efforts.

Caregiving is a time in your life when you need support. You are asking an enormous amount of your body, mind, and emotions–and without finding a way to replenish the well, you’ll run dry. So on top of caregiving someone else, you have to find ways to nurture yourself. This may sound like yet one more thing to do, but it’s your lifeline–literally.

Caregiver burnout is real. It can cause a host of physical and mental ailments. The Journal of the American Medical Association at the University of Pittsburgh conducted a study and reported that “elderly caregivers are at a 63 percent higher risk of mortality than noncaregivers in the same age group.” When I read this, I decided that taking care of “me” definitely got moved up on the priority list!

It’s easy to remember to pop a multi-vitamin and you already know all the things you should be doing–getting enough sleep, taking a 30 minute walk a day, eating more fruits and veggies–but it’s less easy to remember what friends add to your life. Nothing is more stress relieving than a good conversation–when you feel you were heard and understood. This is the best way to stay healthy and to find the joy and purpose that caregiving requires. 

Five Simple Ways to Cultivate Your Friendships During  Your Caregiving Years:

  • Have at least one friend who is currently caregiving–or has been a caregiver. You know the old, “Misery loves company?” Well, let’s spin it a bit, “Caregiving needs company.” There’s nothing like two people who have been through something similar–that knowing nod, how easy it is to open up, vent, and be honest when you’ know the person you’re talking to has experienced what you have–it’s comforting, you don’t feel judged, and it gives you a new-found strength. If they’re making it, so can you.
  • Have one friend who isn’t a caregiver. It’s important to keep the other parts of “you” going. If you were a quilter and you don’t have time to quilt, don’t throw out all your friendships–call a fellow quilter and talk fabric. Turn that caregiver side off for a few minutes–and be something different–a knitter, a poet, a hiker, a gardener, one of the college girls…whatever reminds you that you have many facets.
  • Keep friendships going online. You may not be able to take a trip with your girlfriends right now, but you can email or Facebook each other. Check out some online caregiving chatrooms–you can give–and receive advice online. Before you knock it, know that many people have found true and lasting friendships that started online. It’s something to look forward to–something doable, even when caregiving keeps you at home and takes up much of your time.
  • Cut any friendships that are draining you. This may sound like anti-friendship, but let’s face it, most of us have held onto a toxic relationship or two for far too long. Toxic people make you feel guilty, heavy, foggy,and they’re always negative and pulling you down–or they’re drama queens and their issues are way more important than yours. You leave their presence or hang up the phone feeling worse than when you started! Caregiving isn’t the time to have this kind of weight in your life. Use (or blame)  your exhaustion, lack of patience, and quickness to become irritated as an easy way (okay, excuse) to let go of these kinds of relationships–at least for now. I let go of a couple of toxic relationsips when I was caring for my mom who had Alzheimer’s, and years later, I’m so glad I did! My mom’s Alzhiemer’s helped me see how precious life was, and I simply couldn’t deal with people who pulled me away from that.
  • Be your own best friend. You know that internal monologue you have playing your head? You know what I’m talking about–all the guilt you heap on yourself–all the less than kind things you say about your body, the way you beat yourself up all the time about every little thing? Would you let anyone else in the whole world talk to you the way you talk to yourself? It’s time to talk to you the way you’d talk to a good friend. Even when you need admonishment, you’d do it in love.

Surrounding yourself with friends is a surefire way to stay healthy, to feel supported, and to sustain yourself in your caregiving years. You’re also doing your friends a favor. We learn from each other, and sharing the lessons you learn while caregiving could make it easier for someone else.

August 8, 2009 at 12:27 am 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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