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How to Explain Alzheimer’s to Your Children and Grandchildren

“Grandpa has Alzheimer’s” isn’t what you want to have to tell a child, but 5 million Americans suffer from this disease and the best thing you can do as a parent–is to talk. How to explain Alzheimer’s to your children and grandchildren isn’t as big or scary as it sounds. By having a conversation and explaining clearly and simply, according to their age and comprehension, you can comfort and inform your child–and even bring your family together.

Suggestions For How to Tell a Child Under Six That Their Grandparent Has Alzheimer’s:

  • “Grandpa has a hard time remembering stuff. He might forget your name, or where he put his keys. He might forget what keys are for–that they unlock doors and start cars. They call it Alzheimer’s–that’s a big word. You know how you have to be patient with your little brother (or cousin or neighbor) and not get upset if he grabs your toy or starts to cry for no reason?  Well, we have to patient with Grandpa kind of in the same way. Remind them that even though Grandpa might not say it, he still loves you–and you love him.  Answer their questions as simple and as honest as you can. If you don’t know the answer, or wonder how to say it, ask if you can think about it.  Tell them “we have to be patient with Grandpa and pitch in when we can because that’s what families do. Can you help me do that?”

How to Tell a Child About Alzheimer’s Ages Six to Twelve:

  • Start with the conversation above, but add to it. Tell them it was named after a doctor who helped figure out what was going on. Show them pictures if they’re interested. Let them “see” what the brain is doing. Explain that older people get it, but not everyone. Explain that it’s not contagious. Explain that it does get worse over time. Tell them you’ll let them know what’s going on. You’ll explain it, answer their questions, help them figure out what to do or say. Encourage them not to avoid their elder loved one. Tell them it’s not as scary or as awful as some people think and even though they might forget who you are and even who they are, they’re still your family–and in many ways, they’re still in there. Give them the option to visit or not visit–to stay for just a few minutes, to say when they’re uncomfortable. Let them know that hanging out together isn’t difficult–you can just sit together–not talking–looking at the birds or eating ice cream. Let them find their own way.

How to Tell a Teenager a Grandparent has Alzheimer’s:

Build on the information above, but encourage them to explore for themselves. Give them the names of some websites, check out some movies or videos that approach Alzheimer’s from various perspectives. Encourage them to do a report on Alzheimer’s for school or write about it in English class, or drawing/painting/photographing a picture. Give them a journal to write down their feelings and memories. Encourage them to find ways to keep Grandpa alive–by telling his stories, asking for his tools or photos. Talk about the scary stuff. Bring it up. Share your own fears–that you’ll be forgotten, that you won’t be able to reach them anymore, that they’ll die and you never got to say the things you needed to.

Alzheimer’s can ironically bring families together. So talk about it. Kid about it. Ask questions. Ask them to pitch in. Thank them when they do. Let them off the hook when they need to flake. Accept the love and support they give you. My mother lived with my family during the last almost 3 years of her life–and she had Alzheimer’s. My teenage daughters learned about the disease, but more important, they learned about family. You’ll find that having a grandparent with Alzheimer’s isn’t about all the memories you lose–it’s also about the memories you make.

For more information, check out: http://www.caring.com/articles/talking-to-kids-about-alzheimers

April 16, 2010 at 10:03 pm Leave a comment

What is Vascular Dementia?

A lady raised her hand at a caregiver workshop and said that her husband was recently diagnosed with vascular dementia. She wondered how that was different from Alzheimer’s.

Dementia is the big umbrella name for diseases that are neurological and effect our memory and other cognitive abilities. Alzheimer’s is the largest sub-category of dementia followed second by vascular dementia.

What is vascular dementia?

Vascular dementia is caused when the blood supply to the brain is blocked. It affects a person’s memory and cognitive functioning, which includes our ability to reason, recognize things, and make sound judgement. It tends to affect people between the ages of 60 and 75. it affects more men than women and appears to be related to heart disease, and particularly, high blood pressures.  It can come on gradually or suddenly.  

*Vascular Dementia Symptoms Include:

  • Memory problems; forgetfulness
  • Dizziness
  • Leg or arm weakness
  • Lack of concentration
  • Moving with rapid, shuffling steps
  • Loss of bladder or bowel control
  • Vascular Dementia Can Affect:

    • Slurred speech
    • Language problems
    • Abnormal behavior
    • Wandering or getting lost in familiar surroundings
    • Laughing or crying inappropriately
    • Difficulty following instructions
    • Problems handling money

    There is a bit of good news: by doing all you can to prevent heart disease and high blood pressure, you help to prevent vascular dementia. Daily exercise, eating healthy, taking medications prescribed for our conditions, and keeping our brains sharp and engaged are the best ways to prevent vascular dementia and heart disease.

    Know the signs of a stroke:

    • Brief episodes of numbness
    • Temporary loss of vision, speech, or strength may indicate a mini-stroke (TIA) or a stroke.

    If you experience these symptoms, call 911 immediately. There are medications when taken early, can help to prevent or deter the effects of a stroke.

    The better we educate ourselves, the more empower ourselves. Share this information with family and friends. Vascular dementia is one disease we can help to prevent.

    *from Helpguide.org.

    April 16, 2010 at 6:41 pm Leave a comment

    Protect Your Alzheimer’s Loved One from Wandering: 5 Tips to Keep Them Safe–and Home

    My mom was determined to call a taxi and “go home.”  Problem was, we moved 2 states away! She had Alzheimer’s and I couldn’t convince her that this was her new home. Every time I turned around, she was trying to “escape.” I called my little Houdini. Once, I found her in the bushes outside the front of our house. That scared me.  She was quick and stubborn–and it was time to get my act together. Every day, hundreds of elders wander off–many due to Alzheimer’s or dementia. The sad fact is that some don’t make it back.

    Every family caregiver with a “wanderer” knows what a challenge this can be. It’s like having a toddler (or a teenager) you can’t turn your back on. You panic and think of every awful, terrible scenario the second you can’t find them.

    5 Tips to Keep Our Elders Safe from Wandering:

    • “Elder Proof” your house just as you would for a toddler. Move dangerous chemicals and medication out of reach, make sure your bath water isn’t too hot, and taking extra caution when you’re cooking. Be sure to declutter stairs (or even consider a gate if you’re concerned). Even consider keeping your keys put away and take precaution if you have a pool or live near a body of water.
    • Get an alarm system on your house and doors. It’ll beep any time there’s activity–because wandering happens all hours of the day and night–even when you are home. Also get dead bolt lock (great for doors you don’t use all the time) and keep the key on your keychain–hooked to your person or put up safe.
    • Get your loved one an ID bracelet or other forms of identification. Be sure to have a photo of how they look now.
    • Check to see if your state has the Silver Alert system. It broadcasts a missing elder to the news and on the highways.
    • Be friendly with your neighbors and ask them to help “keep an eye” out–nothing is more helpful than being surrounded with people who care. If you need to go off, ask a neighbor, church volunteer, or community volunteer to come and sit with your loved one. If they’ve wandered once–they’ll do it again.

    These simple tips can keep your loved one safe–because in the end, gadgets don’t keep people safe. People who care, who check on them often…and simply hanging out together–keeps everyone safe.

    April 4, 2010 at 2:32 am Leave a comment

    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

    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

    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

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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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