Alzheimer’s and Mother’s Day, Remember Mom the Way She Used to Be

In a few days, Mother’s Day will roll around again, and if your mother has Alzheimer’s, you’re probably dreading the festivities. You don’t know whether to ignore it or pretend everything’s all right. Your heart feels like a concrete block. Heavy and vacant. You want to honor your mother, but the mother you once knew and loved doesn’t seem to exist any more. Caregiving a mother with Alzheimer’s can be heartbreaking, there’s no way around it.

Working through the emotions that come with Alzheimer’s caregiving isn’t easy. Anger, even rage comes to mind. Sorrow, loss, frustration, longing, and grief also come in tow. You hardly have time to feel anything, you’re too busy keeping them safe, finding the next solution, and hiding behind every numbing way to avoid you can.

My mother had Parkinson’s and then developed Alzheimer’s. I felt like we jumped from one burning, sinking ship to another. At least with Parkinson’s she knew who I was. She didn’t try to hurt me or act and talk in ways that my mother would have never done.

And then something changed. I had this moment of clarity. My mother’s never going to be herself again. She’s never going to remember me or her husband or her life–ever again–and even if she does for a brief moment, it won’t last.

But I can remember. I know the stories, the bedtime songs, the recipes, the funny, crazy, even awful moments we shared as mother and daughter. I have the strength and perseverance to keep on loving her–the her she is now and the mother she’ll always be to me.

Somehow, that brought me comfort. I could let go of what I couldn’t change.

This Mother’s Day I hope you too, find a sense of peace. It’s far from idyllic, I know. But even a little peace is a blessing.

May 7, 2010 at 1:39 am 2 comments

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

    Is It Safe to Leave a Person With Alzheimer’s Alone?

    Is it safe to leave a person with Alzheimer’s alone? What if you have to work, have to go to the doctor’s or just  need to take a walk.  Is it safe to step out for a  few minutes? Few hours? All day? Caregivers want to know. They have jobs, need to take care of their personal life and health, and just need a break. The answer is…it depends.

    Alzheimer’s is a form of dementia. Both effect parts of the brain, including memory, but it can also effect other cognitive abilities such as our ability to reason–and even our impulses.  Alzheimer’s has stages, can progress slowly–or rapidly, and can even plateau for a period of time. That part of the disease is difficult to measure and is usually observed and diagnosed–meaning they look at a person’s symptoms to figure out what stage they’re in.

    I’m skipping the medical jargon, but here’s some great sites that explain Alzheimer’s for the layperson.

    Check out:

    Stages of Alzheimer’s (Alzheimer’s Association)

    The Alzheimer’s Brain (Mayo Clinic)

    So deciding whether to leave your loved one who has Alzheimer’s is a lot like parenting. You know your loved one better than anyone. You have a better feel for the situation and your gut can guide you. But if you have a check, you need to ere on the side of caution. Too much is at stake.

    If your loved one has early stage Alzheimer’s/dementia, you may be able to run to the store and leave them for a half hour. If your loved one can’t remember how to press the emergency call button or dial 911, or will get confused and leave the house to try to find you, it’s probably not wise to leave them.

    That’s why it’s so important to build your support system. You do need to run errands, take care of your health, and even meet a friend for lunch–but it’ll be even better if you can do it with a peace of mind.

    Build Your Caregiving Circle of Care:

    • Ask a neighbor to sit with your loved one
    • Ask an extended family member
    • Call your local church to see if they have a list of volunteers
    • Call your local Council on Aging or other elder resources in your community and ask for volunteers
    • Check out adult day care centers in your area
    • Call some of your loved one’s old friends or coworkers. They might enjoy an afternoon visit while you run errands
    • Call your local college and ask for the nursing department to see if they have interns who could help
    • Hire a local college student
    • Check out various home health agencies–many are resonable. A CNA can cost about $15-$20 an hour
    • Be sure to also check out respite care for longer times–a long weekend
    • Check out local care homes to see if you can pay for your loved one to stay for a few weeks if you need to plan a surgery for yourself or need to take a long trip

    Ask and keep asking. Don’t give up if the first couple of call lead you to dead ends. I promise, one of these will work–and not only will you get some additional help, you create relationships and can even enrich their lives.

    Perhaps the question isn’t whether or not your loved one can be left home alone…it’s that they don’t have to.

    April 2, 2010 at 12:56 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

    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

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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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