Archive for May, 2009

Does My Parent Have Dementia or Alzheimer’s: What’s the Difference?

What exactly is dementia? Is it different than Alzheimer’s?

Most family members aren’t quite sure what the difference is when their loved one is first diagnosed. The questions continue:

How will our lives change? Can Dad still drive? Should Mom continue to with us? Is it safe?  

I felt like I had been kicked in the gut when my mother got Alzheimer’s. I had all the ghastly images in my head of people locked in a facility, completely devoid of thought and not recognizing their family, or even who they were. I went to the worst place possible.

In time, and with much reading, learning, asking questions, and figuring out how to handle my mother physically and emotionally, I became less scared. My mother was still my mother–and perhaps most importantly–I was still her daughter.

If you’re at the beginning of this journey and you’re still in the freaking out stage, then realize you’ve got your own processing to do. In the beginning, I could hardly bring myself to say the word.

After you catch your breath, start on the learning curve.

What’s the difference in dementia and Alzheimer’s? Well, there’s no better place to visit than the Alzheimer’s Association or Mayo Clinic. When it comes to something this life changing, their research and commitment to caring for those who struggle with these diseases are unprecedented. 

In a nutshell, dementia is the deteriorating of mental functions–to the point to where it effects your daily life (job, personal care, relationships). Dementia is actually a name for a group of symptoms. It can be caused by many things (alcohol abuse, accidents, other medical conditions). So consider the word, “dementia” as an umbrella term–and your first of many stops along the way.

Alzheimer’s is actually a type of dementia. It’s the most common type and it causes a severe decline in intellectual and social function. The brain begins to degenerate, which causes the symptoms to increase over time.

How Do I Educate Myself about Dementia and Caregiving?

  • Piece it together. There’s no one straight path. Go to the ‘net, but remember to “consider the source.” For medical information, stick with the professionals, for personal experience, check out blogs and other more personal experience based sites.
  • Go to the library or buy books on the subject. Get several, and make sure some of them offer practical every day advice–on how to handle behavior issues, which is a big issue when dealing with Alzheimer’s.
  • Join a caregiving support group. Most communities have one, or more. Call your local Alzheimer’s Association chapter, call your local hospital, check out your local  elder affairs office or senior community center or adult day care center. There are so many people out there ready to help you. Just poke your head out and you’ll find you’re among friends.
  • Do it your way. Don’t limit yourself to just the medical community. Literature, poetry, art, and music all explore this experience and can offer you insight and relief. How you perceive dementia and Alzheimer’s effects how you deal with it.
  • Keep an ongoing list of questions. Ask everyone. Ask your doctor, your nurse, your neighbor. Questions get answers, over time–so don’t give up.
  • Don’t settle. Find a doctor you like and respect. Ask your caregiving group who they recommend.
  • Don’t try to go it alone–get home help now. Don’t wait until things are out of control.
  • Check out a care home. As difficult as that may be, take a friend with you and begin to explore your options. One day you may need them, and you don’t want to have to make a rushed decision.

Is it all bad news? Absolutely not! My mother and I still had many, many good times together after her diagnosis. We shopped, laughed, had a couple of good mother-daughter squabbles. I value that time. In so many ways, she was cuter and funnier, and I could forgive and let go of so much. After all, how do you stay mad at someone who calls you “little girl?” (That was what she called me after she forgot my name).

I learned a lot in those first few years, and the more I learned, the less afraid I became.

May 29, 2009 at 2:40 am 3 comments

5 Great Ideas to Help Our Elders Stay Sharp

Is Dad getting a little forgetful?

Is Mom’s memory a bit rusty?

It happens with age. In fact, memory issues start in our 50’s, but it doesn’t mean your loved one necessarily has dementia or Alzheimer’s. What it does mean is that caregivers are wise to pay attention and track any changes. Even if your loved one has started  to forget a few things, you can help.

5 Ideas to Help Our Elder Parents Stay Sharp:

  • When you’re riding in the car together–running errands or going to doctor appointments–use the time to sing together. Remembering the old songs of your childhood (lullabies, camp songs) and even songs of their youth (dating years) is a great way to share a memory. Songs are a great way to remember something, so even sing old commercial jingles or kid’s songs. Act like you’ve forgotten a line and see if they pick it up.
  • Ask for help. Whether it’s cooking homemade biscuits in the kitchen with mom or changing the oil in the lawnmower with dad, include them. Let them be a bit bossy and tell you what to do. We all need to be needed. Follow their directions and say thank you for their help.
  • Get them to help you make a list. The next time you need to go to the grocery store or to the hardware store, ask them to help you make the list. Even if they can’t write, they can look in the frig and see if you need eggs. Let your mom or dad help plan the menu for Thanksgiving or for an upcoming family birthday party. Let them have some choices about what will be served, what music will be played. We feel most engaged when our opinion matters.
  • If you haven’t started scrapbooking, now is the time. Maybe it’s not your number one hobby, but placing some photos in albums together is a great way to pass an afternoon. Ask questions about who’s-who. Gossip a little (you know you always wanted to know the truth about crazy Uncle George). Let them go on and on about a story that doesn’t really have an ending. The point is to get them thinking, remembering, and feeling that what they have to say, to give is important.
  • Play a game. What about checkers–or tic-tac-toe? While the rice is cooking or you’re waiting on the doctor to call you back, get out a deck of cards and play a game of Spades. Don’t be a stickler about the rules, but use this time to let them practice counting or utilizing strategy techniques without it seeming artificial.

Once I learned to relax around my mom, I found that she was good company. Helping our elders stay sharp doesn’t need to be hard or feel like a test.

It felt like two people hanging out together.

May 26, 2009 at 6:35 pm 1 comment

What Does Dad Want? Father’s Day Tips For Siblings

What does Dad want for Father’s Day?

Probably not a tie or a cake.

Dads come in all shapes and sizes, and caregiving a grown man who has raised you, supported you, and prides himself in taking care of others is a challenge. Dads come in all varieties: some dads are grumpy, some are procrastinators, and some are drill sergeants who have every intention of running your life like a military encampment. But we love them, each one, just as they are.

Our dads inspire us. They are a source of strength and even as they age and when disease comes into play, we see our dads as we did when we were children. But sometimes our dads really do need us, and figuring out what it is that they do want and need takes some thought.

Father’s Day Tips for Dad:

  • Keep your Father’s Day celebration short and sweet–most dad’s get choked up with emotions, so be thoughtful about how much (or how little) he might choose to express.
  • Think about what your dad would want–or need: we tend to give gifts from our point of view–but try to think about his from his point of view.
  • How about a dad outing? Go fishing, bird watching, to a car show…gotta think like a guy to make a guy happy.
  • Check his “supplies.” Some men don’t think about replacing socks,  underwear, wallets and belts. Father’s Day is a good time to get dad stocked up on the necessities–and he’ll appreciate this kind of thoughtfulness.
  • Get a few of his old buddies together. Work buddies, army buddies, Shriner buddies…arrange a gathering and then get out of the way and give them some “guy time.”
  • Don’t forget your camera. This is for you more than him. Remembering our dads is too important to miss.
  • Does your dad have Alzheimer’s or is he just plain forgetful? Take this special day to tell him your favorite daddy-daughter/daddy-son story. There’s no better gift than helping him remember.

Enjoy Father’s Day by remembering what makes dad unique.

May 22, 2009 at 12:55 am Leave a comment

How Do I Handle Caregiver’s Guilt?

When it comes to guilt, caregiver’s have a corner on the market. We feel guilty about things we did, things we thought, things we wish we had done…the list goes on. Any of these sound familiar?

  • I raised my voice yesterday, and I think I really hurt my mother’s feelings.
  • Sometimes I think about what my life would be like if I were to place my wife who has Alzheimer’s in a care home.
  • My dad was shouting for no reason, and I got so aggravated that I squeezed his arm really tight to get him to be quiet–tighter than I should have. Now I feel awful.
  • I hate to admit it, but I didn’t call my mother back–and she had fallen and was lying on the floor for over an hour!
  • I lied and told my husband his prescription was out–just so I could have an excuse to run to the store and have a few minutes to myself.

Caring for my mother who had Parkinson’s and Alzheimer’s meant that I had to give up the notion that I’d never raise my voice, or that I would never forget a medication time, or that I wouldn’t snap back with a sarcastic response.

While I was caregiving my mom, my husband was called to jury duty–a pain and suffering case. After several hours of deliberation in which no one seemed to be budging, my husband suggested a compromise.

“Look,” he said, “all of us agree this person deserves some monetary compensation. Why don’t we all write a number down, then we gather them and throw out the high, throw out the low, and average the rest.” They went home within an hour.

That got me to thinking…so I throw out the low part of my day–the moment I gritted my teeth and yanked the sheet too hard, and I throw out the high–when I make her banana pancakes for breakfast, and I averaged the rest. Overall, we had  pretty good days if you averaged them out.  

I call that “good enough” caregiving. 

Good enough caregiving means that you remember why you started caring for your loved one in the first place. They need you. They don’t need just anyone–they need you–the person who loves them, the person who is dedicated to making sure they’re cared for properly. These are reasons you can believe in.

Good enough caregiving means that you self-correct when you get “off.” So you got snippy. Make a mental note on how to handle it better the next time.

Good enough caregiving means that you say you’re sorry, and you don’t beat yourself up all night. It also means that you forgive easily. Even when your care buddy, or care professional doesn’t ask for forgiveness, you just know they didn’t mean it that way.

Good enough caregiving means you can step back and look at the big picture and accept the imperfectness in yourself, in others. You’re okay with all that life has handed you–even the less-than-great-parts.

Perfect caregiving? No such animal. Every situation offers a chance to learn and grow. Sometimes we’re tired and we don’t say or do what we know we should. Sometimes we do. And that’s good enough.

May 19, 2009 at 12:48 am Leave a comment

3 Keys to Caring for Dad

“I always thought Dad would go first,” my friend Jenny shared after her mom died of pneumonia last year.  “It’s different, caring for your dad. I think I worry more about him not letting me know where he’s at, and I worry that he’s too isolated. ”

Caregiving dad  can be a different experience than caring for your mom. It’s part personality types and part typical “male behavior” differences.

“I’m close to my dad, but I think it”s easier in some ways, for a woman to take care of a woman–and I don’t want Dad to lose his sense of dignity–how do I strike that delicate balance and still meet Dad’s needs?” Jenny shared at a recent caregiving support group.

3 Keys to Caring for Dad:

  • Watch for clues. Most men aren’t going to come right out and tell you about their aches or pains or if they’re feeling a bit depressed. Listen and observe. Psychologists suggest that men open up easier while they’re doing something else–something with their hands. Clean out the garage together, or ask him to help you do a minor repair–then gently start a conversation.
  • Be matter of fact when it comes to handling delicate physical or emotional issues. Treat it like a procedure. Reassure him that cleaning his catheter or helping him in and out of the shower is just something that needs doing. Talk about something else the whole time–give him a mental “problem to solve,” such as asking him how to do a repair or if he’s into sports or politics, get him engaged in thought.
  • Encourage your dad to develop a social life–on his terms. You can’t take dad shopping to cheer him up like you would your mom.  Don’t be surprised if your dad becomes quite the socialite. Many seniors enjoy a second teenage hood. Some seniors meet daily for coffee, others enjoy playing poker or Mah Jong at the local rec center. Others are simply content putzing around home and running errands.

“I’m actually surprised how much I enjoy my Dad,” Jenny said at a recent caregiving support group. “it took him some time, but he’s adjusted to bachelorhood, and we talk about everything under the sun. In some ways, I feel like I’m getting to know my father for the first time.”

May 14, 2009 at 8:00 am Leave a comment

Caregivers, You Don’t Have to Hit the Gym to Feel Good

If someone told me I should work out while I was at the height of caregiving my mom, I would have laughed. My mom’s Alzheimer’s, Parkinson’s, and Sundowner’s Syndrome (when they get their days and nights mixed up) was more than enough of a work out. That would have been my argument, but the truth was that I gained almost 30 pounds during my full-time in our home caregiving experience.

Stress. Cortisol. Exhaustion. I had every reason to exercise, but I didn’t see it that way. It was a matter of what I believed.

I believed exercise would take too long.

I believed my mom would interrupt me to the point it would just be frustrating.

I believed I was too tired.

Caregivers are great at coaxing. We have to be.

We coax Dad into giving us the car keys. We coax Mom into using her walker. We coax our spouse into holding our arm when walking down the stairs. We speak gently. We sound encouraging. The tone of our voice convinces our care buddy that this is no big deal, easy as pie–and it is when you’ve got someone coaxing you along.

I decided to use that coaxing technique on myself.

I’m not exercising, I’m just moving.

Turn on some music and just dance.

Take some deep breaths and enjoy stretching.

Why don’t you buy some small hand weights–just for fun?

Ten minutes in the morning, that’s all I’m going to do.

My goal is to feel good, that’s all.

That inner-coaxer worked!

I felt so much better just moving a bit. The music lifted my spirits–and my mom’s. I found that my mom liked to watch me exercise. She “instructed” me, and before long, she was trying to show me how to do it.

“Is it time for stretches?” My mom asked one morning after breakfast.

Yes Mom, time for stretches.

May 12, 2009 at 12:39 pm 1 comment

“When Mama’s Happy…” Can Caregivers Make Their Loved Ones Happy?

You know the old saying, “When Mama’s happy, everybody’s happy.”

 But making sure your mom is happy, feeling loved and appreciated can be a challenge when you’re also her caregiver. Trying to make anyone happy is nearly impossible. We have to want to be happy. Later in life, your mother may become dependent on you–physically and emotionally–and finding ways to help your mom feel loved and appreciated (especially on Mother’s Day) is important.

There were some days when I knew that no matter what I did, I wasn’t going to be able to make my mother happy. I could have been standing over her with a palm branch fanning her while she sipped on orange juice I squeezed with my own hands and box of Godiva chocolates–and she still would have found something to complain about.

One day, (when my mother was living with my family and me), my mom shuffled into my kitchen, slammed her hand down on the counter (half in jest) and announced,

“I’m not happy,” she said.

I didn’t answer her. I wasn’t quite sure what to say and it was hard not to smile. I appreciated her forthrightness, her awareness, but I also didn’t feel like it was my sole responsibility to poof, make her happy. I continued loading the dishwasher and wondering where exactly this conversation was going.

“I said…I AM NOT HAPPY!” She yelled.

I stopped what I was doing and offered my mother a cookie and some Sprite. At that moment, I knew that while I couldn’t stop Parkinson’s and Alzheimer’s, I could offer her a small gift–a creature comfort.

I realized I was only responsible for my happiness. I could try to make my mother happy–and make isn’t really a good word here–I could offer kindnesses, gifts, my time and my focus–but it was up to her as to whether she would–or could turn that into “happiness.”

That day, I came to the conclusion that perhaps only one of us might be happy. And I chose me. As selfish as that sounds, each of us has to choose our own path.

But I did know a few tricks. I knew what my mother enjoyed–Klondike bars, playing the piano, talking to a friend or relative on the phone, reading the Sunday newspaper, playing in her jewelry box (rearranging it), and eating pretty much anything sweet.

I tried to make sure that every day I offered something she enjoyed. It’s such a simple gesture, and on Mother’s Day it’s one of the simplest things we can offer–to know them, to know what they love, to know what might give them a few minutes of happiness.

May 7, 2009 at 8:00 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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