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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

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

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

Reading Aloud, A Comforting and Connecting Caregiver’s Gift

Poems, nursery rhymes, hymns,  patriotic songs, Psalms, Ecclesiastes, the Torah, Shakespeare, James Patterson or Robert Ludlow’s adventure books, Agatha Christie and W.B. Yeats…the list could go on and on. Babies to centenarians enjoy the lyrical sound of a voice reading aloud. Alzheimer’s studies show the brain light up when a poem is recited. It taps into our childhoods, our histories, our loves, our faith. We begin to repeat the familiar words thought long forgotten. What a comforting and connecting caregiving gift.

As my mother began to forget how to read and write, I would sit next to her at the end of the day and take my Daddy’s well-worn Bible and read her the Psalms. She snuggle down in the bed and I watched her arms and legs begin to relax. Her mouth would move. She knew these words, the cadence in my voice. Her face softened.

It took me back to my childhood when my mother was the reader and I was the listener. It took me back to my faith, to Sunday school, to gold stars for memorizing a passage, to the love of language and the poetics of old English. I wanted to hear the “shall’s” and “beholds.” Tell me the story of Noah, of great wars with crushing defeats and cheering victories.

I would open an old hymn book and read the words of Amazing Grace. We recited the Star Spangled Banner in the car. I sang her the lullaby’s she sang to me as a child. I found that it soothed all we couldn’t talk about. As Alzheimer’s continued to ravage her mind and she forgot the name of simple objects, of even knowing who I was to her, she still responded to Robert Frost’s line, “and miles to go before I sleep.”

I learned to let go of what I couldn’t keep. We lost parts of my mother, I can’t deny that, but we didn’t lose all of her. We still had our poems, Psalms, and songs.

March 12, 2010 at 7:40 pm Leave a comment

Why Do People with Alzheimer’s Mumble, Babble or Moan?

“I visit my grandfather in a care home every other week, but now that he’s been transferred to the memory disorder unit, I hesitate about bringing my kids. Other patients there mumble, babble or moan, and I feel it would upset my children (ages 8, 10, 14). My grandfather doesn’t do this, but maybe he’ll start. Does everyone with Alzheimer’s eventually do this?”

A woman in her early 40’s asked me this question at a care talk recently. Since this type of Alzheimer’s behavior tends to occur in the later stages, many home family members don’t experience this at home in the beginning to middle stages of Alzheimer’s and don’t know to expect it.

I talked to my friends at the Alzheimer’s Association and here’s an easy description of what’s going on:

 There are 5 stages of Alzheimer’s/dementia–stage 1 being most severe. Babbling, mumbling, and moaning usually occur in stage 2 or 1 as the brain deteriorates and most language ability declines.

At this level, brain waves fall into “grooves” (I’m paraphrasing here) and repetitive habits, patterns loop over and over and are almost comforting. Some patients repeat words, other pat or tap or knock. Others like to touch silk or something knobby with texture. Some pace, bang their heads, or yell. Part of it is pent up energy and stress. Part of it due to the profound isolation and lack of stimulus that come with the disease and being sectioned from the rest of the world. Many neurological diseases share these behavioral traits such as severe OCD and schizophrenia.

An excellent tutorial on dementia/Alzheimer’s that’s clear and concise can be found at  North Carolina Alzheimer’s Association site (click here) 

This presentation by Ms. Snow includes photos of the brain in the various stages, descriptions of different of dementia, including Alzheimer’s, each stage, and how to “reach” your Alzheimer’s/dementia loved one. Honestly, this one document tells you most of what you need to know about the disease without dumbing it down–or drowning you in too much medical jargon.

While your loved one may not be able to communicate with you at this stage, they can still know your presence, send your mood by facial and body gestures, and respond to touch. This is the time when being their care advocate it crucial. While it’s painful to see someone you love in this state, they need you to protect them, be their voice, and make sure they are not in pain or neglected.

I encouraged this sandwich generation mom to sit with her kids and explain in simple terms what Alzheimer’s does to the brain, and why people at this stage act the way they do, and that it’s not something to be afraid of–it’s a medical condition. It’s not contagious, and if they’d like to visit, they are welcome–and the minute they want to leave, you’ll leave. Give them the option.

By demystifying Alzheimer’s/dementia, we help educate our communities. We don’t have to be afraid to visit our loved ones. By understanding what’s happening and how we can reach them, we bring the world a little closer together. One family at a time.

March 10, 2010 at 2:13 am Leave a comment

Why Do People With Alzheimer’s Act So Mean?

I don’t know about you, but when I’m lost, scared, and am in unfamiliar surroundings, I tend to get a little mean myself. For a person with Alzheimer’s, this state of fear and agitation never really stops. Even if they remember who you are, who they are, and where they are…five minutes from now they may lose it. One of the best things we can do as caregivers is to lovingly detach from their tangled emotions and not take what they say or do personal.

 Easier said than done. 

Alzheimer’s can cause the areas of the brain that house our emotions to go haywire–so those feelings of mania, anger, and anxiety are all lit up even where there hasn’t been a trigger such as an event to cause such feelings. Understanding why our spouses or parents are “acting mean” can help us  realize that they can’t remember what we said five minutes ago, they can’t necessarily control their unpredictable and unstable  emotions, and they can’t always feel love or connection with us.  Also know that drug interactions can aggravate behavior and increase feelings of paranoia–so mention any changes to your loved one’s doctor.

I grieved when I lost my mother to Alzheimer’s. I grieved when I finally hit that wall and knew she didn’t know me, didn’t feel anything for me. It felt so cold. So lonely. And yet I had to keep on keeping on, as the saying goes. I had to do intimate things for her–change her clothes, bathe her, brush her hair–and yet to her–I was a “nobody.”

 Finally, I turned the corner. I chose to remember for the two of us. Her “mean” behavior didn’t throw me near as much. I would be our anchor. I would love when she couldn’t. I would show kindness and patience when she couldn’t.

 Yes, there are neurological explanations for Alzheimer’s behavior, but the bottom line is that we, the daughters, sons, spouses, friends, and caregivers have to dig deep–and choose to go on, to love, to act with maturity and grace–regardless.

January 22, 2010 at 6:13 pm 6 comments

Incessant Questions: Manage Challenging Alzheimer’s Behavior

“Can I go home? Will you take me home? This isn’t my home–will you call me a taxi? Where do we live?”

My mom asked me these questions all day long. She had Alzheimer’s and this is typical behavior for a person with a neurological disease. Sometimes I’d answer, feeling my frustration rise to the point to where I was gritting my teeth and on the verge of laughing–or crying–or both. As my mom’s full-time caregiver there were many days when there wasn’t anyone else around. Sometimes I’d ignore her–but that certainly didn’t curtail her incessant questions. Some days it felt as if my head were going to split in two.

No matter what I said, how I handled it, I couldn’t get through.

I knew that Alzheimer’s made her feel lost. Her thoughts were like water draining through a sieve. She couldn’t hold an answer anymore than I can hold water with open fingers. I felt for her, tried to comfort and console her, but how do you get through? How do you offer a sense of peace and closure to someone who can’t hold on to a single thought?

At first, my heart was breaking. I was angry–at the disease, at what it had done to my mother, to my life–and hers. But what good does it do to be angry at a disease? Finally, and it took some time, I found the resolve I needed.

It was okay that she couldn’t remember. I could remember for the both of us. I remembered we were mother and daughter. I remembered for the two of us that I was adopted and the love and home she and Daddy extended to me. I could remember she ate breakfast. I could remember her stories, her songs, her recipes. And with this paradigm shift came peace.

I learned that it’s best to distract and replace. These are two terms professionals in the caregiving and Alzheimer’s field use.

Distract: When your loved one starts asking a million questions, turn on some music, turn on a favorite old tv show, ask them about their mom (they tend to have their long-term memories in tact) or about their wedding day, get them to help fold clothes or get something tactile like coins they can help sort. Keep them busy and focused on something else. Sometimes this works, sometiems it doesn’t–but you learn what works for them–what tactics they respond to.  

Replace: If your care receiver is doing something you’d rather not–handling breakable, touching themselves in public, picking their nose etc., then have a few things on hand that they like–to replace the dangerous or inappropriate activity quickly. Some women respond to holding a doll. Some people like the tactile sensation of playing with two strips of Velcro or touching a lap blanket made of velvet, or knobby material that also has buttons. For others, they’ll respond to singing a favorite song–if you start singing it. Quickly replace the object or behavior not bringing attention to your actions, but distracting them while you divert their attention and then help them to focus on something else.

It takes practice, but it can make such a big difference. For my mom, I found that she responded to my playing the piano. I had moved her piano from her house to mine when she moved in, and when I sat down to play, it made her want to sit down to play. She’d sit beside me and place her hands on the keys–and even though she couldn’t remember that she had breakfast or what my name was, she could still play Amazing Grace.

I also kept a small book of photos of her mother, her sister, and my dad from years ago. She recognized them and liked flipping through the album. Over time, I found lots of ways to keep her entertained. It took some ingenuity but I liked knowing I could alleviate her agitation.

Who knew? Caregiving takes a fair amount of creativity.

December 10, 2009 at 9:37 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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