Archive for February, 2010

Are You Avoiding People Because Your Loved One Has Alzheimer’s?

You don’t meant it to happen, but it does. You start avoiding people. You don’t want others to see your parent or your spouse differently because they have Alzheimer’s. You don’t want the person you love to be pitied. You don’t want to have to explain–or deal with the embarrassment. Is there a stigma attached to getting a disease such as Alzheimer’s or dementia?

So your world grows small.

You stop going to church–what if dad acts out?

You decide to skip this year’s family reunion–you want mom to be remembered as she was–vibrant and funny.

You suggest to your husband that he doesn’t attend a friend’s retirement party–people might suspect.

You stop calling family members–or you avoid talking about what’s really going on.

Is this the right thing to do?

I don’t know if there’s a right or wrong here. It’s part of the journey. As a caregiver and family member you have to process how you feel and how you think your parent or spouse will be perceived. You think you’re protecting their reputation, and maybe you are, but does their reputation really matter?

Every family is different, but I’ve found that I wanted to shield my mom in the beginning. She had Alzheimer’s and Parkinson’s. She was proud. I didn’t think she’d want people to know. (She used to call it “P.D.” because she didn’t want to say she had Parkinson’s).  But as time went on, I got used to the diseases and I got tired of hiding.

So my mom had Alzheimer’s. I realized that doesn’t make her less herself or less of respectable. That doesn’t take away from all the amazing things she did in her life. Looking back, I wish I had been brave and said to the world, “So what? Mom’s got Alzheimer’s.”

I think of that old saying, You’re only as sick as your secrets.

The world is changing. More people are aware of Alzheimer’s.

We take the sting out of the disease when we stop hiding.

February 25, 2010 at 12:26 am Leave a comment

How To Comfort Someone With Alzheimer’s

A caregiver has to have nerves of rubber–not nerves of steel. In the course of just a few hours, your loved one with Alzheimer’s can go from being pouty and grumpy to paranoid and belligerent. It would be easier to ping-pong with an octopus than to try to manage the emotional needs of someone with dementia. And yet you have to try. You know they’re lost, confused, agitated, and scared. So how do you comfort someone with Alzheimer’s?

You have to have a full bag of goodies. There’s no one way–but there are tactics that can help.

Ways to Comfort Someone with Alzheimer’s or Dementia:

  • First, don’t sneak up on them. Many elders have vision issues–tunnel vision, periphery issues, cataracts and starbursts. They might startle, yell, or try to hit–wouldn’t you if you if someone snuck up on you and you didn’t remember who they were?
  • If they’re sitting or in a wheelchair, get on their level. No one likes to be talked down to–but don’t assume they can’t hear. Take the time to find out so you’re not yelling–or if you need to speak clearer. Nothing’s more frustrating than to not figure out what’s going on.
  • If your loved one is agitated, act like you’re in charge. My mother responded to my husband’s strong male voice–it made her feel safe–as if someone were going to take care of things. I found that providing a sense of security was something she longed for.
  • Be empathetic. If they start talking about their dad who passed away when they were a child, don’t hammer the point that he’s dead now. Instead of focusing on the death part, ask what they used to do together. You can add that you used to fish, too, but don’t expect too much connection–while they may for a brief time remember their past, they might not be able to make the visual/imaginative leap to yours.
  • Connect with feelings. Don’t step on the merry-go-round of “where am I/I’ve got to go to my house/I’m supposed to go work–if you do, you’ll never get off. Go to the feeling underneath: Where am I? You’re safe here–let’s get some cookies and milk. I’ve got to go to my house–tell me about your garden. Or I’m supposed to go work–so you’re a school teacher, that’s something to be proud of. Pull out a photo album or go look at the pictures hanging in the hall.
  • Try swaddling. New research has found that if a person is feeling anxious (such as those suffering with OCD or an eating disorder), swaddling–or holding them firm for a few minutes–can relief the acute attack. We wrap our newborns tight in a blanket to simulate the uterus, so this makes sense.
  • Give them a comfort object–a doll, a stuffed animal, or a blanket. Women especially like to hold something–years after holding babies that biological need returns. What an easy and warm way to provide comfort.
  • Distract and substitute. If dad’s about to hurl a vase across the livingroom, ask him to hold the dustpan so you can sweep. Ignore the volatile situation and get them involved in a ordnary activity and help them feel useful.
  • Let go of a bad day. We all have them. Sometimes everything you try falls flatter than a roof shingle. Take a hot shower, cry, ask someone for a hug…and know that tomorrow is a new day.

You know your spouse or your elder-parent better than anyone. What worked yesterday might turn up nada today–but just about everyone I know has one of those magical/surprising moments when you know that you know that the two of you connected. 

Share your victories (and defeats) with your caregiving group or online forum–and maybe someone will have a good tip for you.

Be willing to try the unorthodox–if it’s not illegal then go for it. All’s fair in love and Alzheimer’s.

February 20, 2010 at 1:30 am Leave a comment

The Day I Faced That my Mom Had Alzheimer’s

I didn’t realize I had been avoiding. That’s why they call it avoiding. I was already caregiving my mom but I believed her excuses because I so wanted her life–and if we’re being honest–my life not to change. I had dealt with the fact that she had Parkinson’s and heart disease. I hadn’t faced the fact that my mom had Alzheimer’s.

Punch in the gut.

I was scared. How do you care give a person with physical–and neurological issues? How wild was it going to get? Could I handle it?

I was heartbroken. I thought we had more time. I thought it was hard enough already. I hurt for her, how lost she felt, how nothing seemed to comfort her. 

It made sense. The confusion, agitation, paranoia, the million little things started to add up. We had been dancing around this for months and months.

I knew I had to get educated. I knew I needed a plan. But like most huge things, from the moment I didn’t know to the moment I did, nothing cataclysmic had changed. She was still my mom. I would give her the next dose of meds, make her dinner, and then we’d watch a bit of television.

The changes would come in the next few weeks. I’d go online, make some phone calls, schedule a doctor’s appointment.

I didn’t know what was up ahead. Not the specifics. I’m glad I didn’t.

Yes, there were rough times and sweet times.

The day I faced Alzheimer’s was in some ways a relief–and a re-committment.

Whatever was to come–we’d face together.

February 16, 2010 at 10:28 pm 2 comments

Is Your Elder Bored and Acting Out? 5 Tips to Spark Home Care

One of the challenges of caregiving is finding ways to add a little zest to life. Even if your loved one has Alzheimer’s, they need stimulation–to find life interesting. We all do. Caregivers can feel bored, too. Meals, meds, doctor visits become so monotonous we don’t realize it’s been weeks since we’ve had a great conversation or enjoyed something new–even a different ice cream flavor would be interesting!

In fact, care home studies have proved that bored elders act out–or worse–zone out. There’s nothing as sad as to see a once vibrant loved one completely pull in and not respond. Your mom or dad (or spouse) might be fussy and hard to get along with because they’re bored–not ornery. It takes a little work and creativity, but we can help our elders stay vibrant.

Keeping busy is important, but don’t think that’s the magic cure-all. Our elders don’t want or need as much stimulation as we do necessarily, but they do long to feel engaged. Do things together. Enjoy the connection and find things that give you–and your loved one–purpose.

5 tips to Spark Home Care:

  • Make sure that there’s something to look forward to every day: Tivo a favorite TV show you Tivo and  watch it together while sipping on hot cocoa. Consider getting Netflix so you get lots of good movies right in your mailbox. They have a decent selection of oldies as well.
  • Connections: keep ’em coming. Plan for an old friend to visit, or call your church, where your parent or spouse used to work, or civic organization and reconnect. Dial the number of a cousin and hand them the phone. They might not make the initiative, so you might have to.
  • Create a routine you look forward to: make a monthly trip to the library and another for a pedicure. It’s worth the money and trouble to get out and connect. It’s better to plan a pleasant outing than to spend all your time at yet another doctor’s visit. Lunch out is cheaper than dinner–so find a place your mom or dad likes to go–bundle them up and get out. Take a ride after you eat. There are parts of your own home town you haven’t explored.
  • Make something together–an indoor garden, a quilt (even if all they can do is pick out the colors), learn your favorite recipes from the master, or refinish a piece of their furniture. They may only be able to keep you company–or boss you around–but the more you invite them to participate, the more they realize you’re not going to let them curl in a ball and give up.
  • Enjoy nature right around you. No matter how much they balk, sunshine and fresh air is good for them–and you. Insist they go outside for at least 20 minutes a day in order to get the recommended dose of Vitamin D. Make a small barrel garden with a tomato plant and flowers (marigolds go well and bugs don’t like them). Do some bird watching or plant a butterfly bush or red flowers such as canna–hummingbirds love them.

Keeping our brains and bodies in good fitness takes a bit of a nudge as we age, but learning to enjoy life again–is worth the effort.

February 10, 2010 at 11:35 pm 1 comment

Can a Person With Alzheimer’s Live Alone?

No word strikes such fear as the words “cancer” or “Alzheimer’s.” Both of these disease draw a line in the sand–the day before we got the news–and after. Our lives and the lives of our loved ones are irrevocably changed. Our fears leap-frog and we imagine the worst possible scenario. As caregivers, spouses, and adult children, we do the same thing–we hear those awful words, cringe, and then rush ahead.

But the facts are: many types of cancers are now curable, and there are meds for cancer and Alzheimer’s that offer hope, buy us time, and make these two difficult situations more tolerable. While there’s no cure for Alzheimer’s, it doesn’t always happen quickly or with immediate cataclysmic results.

Most people have lived with dementia or Alzheimer’s for months, if not years–undiagnosed. They’ve been driving cars, keeping house, and going on vacation. Were there some slips? Some gaps? Sure, and yes, there will come a time when it’s not safe to live alone, but that might not be today.

The major factors that will determine if they can live alone is understanding how functioning they are and making sure that there’s a very strong  and active support system in place. Without these, it’s just plain unsafe. 

Simple guidelines for Living Alone with Alzheimer’s:

  • Safety first: Do they still understand the basic concepts of safety? Can they manuever in their house? Will they lock themselves out? Do they remember how to call for help?
  • Are they isolated? Does a family member live nearby? Can someone check on them daily? Are there support services such as Meals on Wheels, home help, and transportation services?
  • Can they manage their medications? Will they ask for help if they get confused, or will they try to cover it up?
  • Can they prepare their meals or is there a way to provide their meals? Are cooking fires and spills a concern?

Family, friends, and community support is key, and while your loved one may insist on living “home alone” begin to explore other options. Alzheimer’s and dementia are degenerative–it really doesn’t reverse its course. You may be able to cobble together enough support to keep them at home for a few more month–but there will come a time when it just isn’t safe, manageable, or feasible. At that point, you may have to step up and be the “bad guy,” but making sure they’re safe and cared for is too important to let it slide.

Remain vigilant and brainstorm–is there a family member who needs a place to stay? So many of us have family members who face unemployment and would be a good fit for general upkeep and meals in return for keeping a watchful eye and companionship. There are also small group homes and care facilities right in their community that would allow them to still take part in their local church and other activities they enjoy.

Visit this great resource to gauge whether your loved one can live alone.

February 10, 2010 at 10:43 pm Leave a comment

Spousal Caregiving: “I’m Not Caregiving, I’m Just Caring for My Spouse”

My husband reminded me the other day that he wouldn’t necessarily consider himself a caregiver if  (or when) I were become ill. “I love you. I’d do what you need me to do.” That’s sweet, but I think of all the spouses out there who go the distance–and more–for their spouse. We will sacrifice, do without, and even go to the point to where we put our own health in jeopardy for our spouses.

According to the National Alliance for Caregiving, 52 million Americans are providing care for loved ones, and almost 22% of all caregivers who are age 65+ are caring for a spouse. About 62% of all primary caregivers are caring for a spouse.  

And if those spouses are like my husband and not really identifying themselves as a caregiver, that means they’re not reaching out, attending caregiver support groups, reading material, going online and educating themselves about the disease, or about the impact of caregiving on their lives, their relationships, and on their health.

It’s not that spousal caregivers aren’t amazing. They are, especially our guys. I speak to hundreds of caregivers a month and I find that our husbands and sons are thoughtful, considerate, and trying very hard to meet the needs of those they love. But I also find that like any caregiver they grapple with loneliness, isolation, exhaustion…and are plagued with worry and guilt that if something happens to them, they don’t know what will happen to their wives.

Alzheimer’s expounds the dilemma. We don’t want our children, our neighbors, our friends and business associates to “see” what’s happened to our mates. We want to keep their dignity in tact. We don’t want anyone to feel sorry for the strong, intelligent, capable person we know and love. So we hide. We make excuses. We avoid lunches and reunions. We suffer in silence.

As a society, we have to take away the stigma of caregiving and of Alzheimer’s. We, this first geneartion to be hit with these staggering numbers have to be williung to step up and speak out. We have to view it as a disease, that’s all. We can still celebrate the soul and spirit of loved ones. We can laugh with them, laugh at life and all it throws at us, and laugh about the disease–to take away the sting.

We must defy the urge to cower, or to go it alone. As humbling and vulnerable as Alzheimer’s can make us feel–as spouses or as persons with the disease–it also reminds us how very much we need our communities, our faith, our families, and our friends.

February 4, 2010 at 3:16 am 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.

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