Dan’s Caregiver Video Blog

Two of our heroes here at the Georgia Chapter, are Dan and his wife Denise. Denise was diagnosed with dementia at the young age of 56, about 3 1/2 years ago. Since then, their lives have changed dramatically. Inspired to use their voices about this terrible disease, both Dan and Denise have become Champions and Advocates for the Alzheimer’s Association. They meet regularly with their legislators, they join us at our annual Advocacy Forum in Washington D.C., they volunteer, they speak, they share.

Since October 2015, Dan has been keeping a video blog, sharing some of his experiences as a caregiver and an advocate. He repeatedly has run into individuals who think that Alzheimer’s disease is nothing more than forgetting things every now and then. In part to educate others about what Alzheimer’s Disease is really like and in part to support others on their own care-giving journeys, he has been generous enough to share these video blogs with our chapter.

You can find all of his videos on our YouTube channel, under the Dan’s Caregiver Video Blog playlist. Here is a link to the playlist: (https://www.youtube.com/playlist?list=PLEgDnYIdVJ15XZx9113lFmq3TnVBfqD-d)

And here is a sampling of what those blogs are like:

Thank you Dan & Denise: for sharing, for caring, for being courageous and for raising your voices to END Alzheimer’s Disease.

 

Macon yoga and dance classes help Alzheimer’s patients and caregivers

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maconyogagroup

Caregiver Coping Part 4: “Take Care of Yourself”

* This is the fourth and final installment in a series where we will be discussing some realistic ways that Caregivers can cope with the stresses of care-giving.

Okay, I said it. You need to take care of yourself.

If you are a caregiver, you may be rolling your eyes at this point, or laughing maniacally because self-care may FEEL like an impossible task. I get that, I really do. But it is a NECESSARY task.

I’m not going to tell you to relax, or to go get a massage. I mean, if you can do those things, great. But I know it’s a rare opportunity that you get a whole afternoon to yourself and can actually unwind in those few hours before returning to the care-giving. I know that being in a perpetual state of “survival mode” may mean that when you finally DO get a few hours to yourself, you have no idea what to do with them. I also know that finances may be tight and running on over to your local spa is not a luxury that everyone can afford. (But again, if you can, by all means please do so).

The bottom line is that no matter how much you love the person you are caring for, the physical and emotional stress of care-giving is high. It is not unusual for care-givers to suffer serious health issues or even die before the care recipient. For these reasons, it is part of your job to take care of yourself so that you can continue to care for your loved one. For all of you guilt-ridden care-givers out there, let me say it one more time – It is part of your JOB to take care of yourself.

Here are a few everyday ways that you can start the self-care process:

  • Move Your Body: Exercise is a natural stress reliever. You don’t have to run a marathon to reap the benefits of exercise. Try going for a walk; maybe a longer-than-usual one with the dog (if you have one!). In addition to exercise, meditation is key to stress-relief. Combine movement and meditation and guess what you’ve got – Yoga! You don’t have to sign up for an expensive yoga package at your local gym – instead rent a yoga video from your local library or try finding some YouTube videos that can guide you through at-home yoga (there are all levels and kinds – consider chair yoga, laughter yoga and gentle-stretching and meditation if you’re a beginner and check with your physician first to make sure it’s safe!)

Woman meditating

  • Treat Yourself: It can be something very small that doesn’t take much time or money that can make your day. Can you get yourself a cup of coffee from your favorite shop? A favorite magazine? Do you have a few minutes to give yourself a manicure or go for a drive? Can you listen to a few minutes of your favorite podcast while you complete a chore? Is there anyway to squeeze in a hot bath or a nap?

  • Get Support!  The importance of this cannot be overstated. Expand your network of support so that you have a mix of family, friends, neighbors and others that you can lean on when you need to. Support groups, counselors, our Helpline and other professionals should be a part of your network. For more ideas on exactly how to reach out for support, refer back to our last post in this series! 
  • Talk to your doctor: If you are experiencing ongoing stress, anxiety and/or depression – that’s serious. Don’t wait to talk to your doctor about this. Care-giving can be very overwhelming and your feelings are normal but we don’t want your symptoms to worsen over time. Think that on-going stress isn’t a problem? Click HERE to heck out a cool video about how it impacts your brain. 
  • Be kind to yourself: This is really hard. We are our own worst critics. You are probably going to make some mistakes. At times you may lose your temper. It’s okay. Laugh when things are funny. Cry when things are sad. Don’t be afraid to feel your feelings – they’re all normal and a part of the journey. Doubt is inevitable and caregiving is chock-full of tough decision after tough-decision. If you are making decisions from a place of empathy and with your loved one’s dignity in mind, then you’re doing just fine. Trust yourself, be kind to yourself, you’re doing the best you can.

  • Advocate: Do our legislators know how difficult this is? Do you wish there were more resources for care-givers and people with dementia diagnoses? Do you pray for a cure? The way we increase resources and funding for research is through our advocacy efforts. Not only is this how we make real, sustainable change, but it is a great way to meet other people going through the same things that you are struggling with. If you’re feeling dis-empowered by Alzheimer’s Disease – take back your power and become an Advocate for the Alzheimer’s Association. Get more information about that HERE.

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Caregiver Coping Part 3: Reach Out For Help

* This is the third installment in a series where we will be discussing some realistic ways that Caregivers can cope with the stresses of care-giving.

Reaching out for help – it sounds simple, right? There are actually some pretty significant barriers that caregivers might have to overcome before they reach out for help. The biggest barrier, is admitting that they need help. This can be really tough. Some caregivers may be under the impression that if they ask for help, they’ll lose all control; others may feel tremendous guilt about allowing someone else to care for a spouse/loved one; still others may have run into barriers previously and have given up on finding help at all.

Help is available, in a variety of forms. The first thing that I often coach new caregivers to do is to start saying YES when someone asks if they can help with anything. It happens all the time, a neighbor or church-member or friend says something like “Is there anything I can do to help?” or “If there is ever anything you need, just let me know!” If you’re a caregiver, I want you to start speaking up right at that moment! Have a mental list ready if possible! It doesn’t have to be something big, like caring for your loved one for a whole day. Small things can make your load lighter. For example, asking if they can arrange for someone to mow the lawn or fix something around the house. Perhaps someone can bring a meal by on night. Maybe someone can watch TV with your loved one while you go for a 20 minute walk. If you’re feeling lonely/isolated, see if someone might be willing to stop by just to visit, play cards or have coffee sometime. Most people who express concern and offer to help, really do want to help! They probably just don’t know how! Having a list of ideas ready will help you say yes to help and will help them identify a way that they are comfortable helping.

There are other (FREE) ways that you can reach out for help and support. Here are a few of the programs and services that the Alzheimer’s Association offers to help you get started:

  • 24/7 HELPLINE: I know I harp on this, but honestly, it is an amazing resource. Our Helpline is staffed 24/7 with master’s level counselors and social workers who specialize in dementia-care. They are they to talk, to listen, to problem solve and to advise you. They can also point you in the direction of community resources if needed. Write this number down and put it on your fridge! 800-272-3900.
  • Alzheimer’s Navigator: If you need to get education about different dementia-related topics and create a care plan and if you are also trying to get other family members or professionals all on the same page as you, then the Alzheimer’s Navigator tool is perfect for you. All online, you can go at your own pace, invite others to join in and create a care plan with action steps assigned to different team members. This is great for long-distance care-givers in particular. Check it out HERE. 
  • Support Groups:  If you’re feeling isolated and alone in your care-giving experience, you aren’t. We have in-person support groups all over the state of Georgia and even some telephone support programs for people who have difficulty getting out of the house. Check out Georgia support group options HERE.
  • Alz Connected:  An online-way to connect with other caregivers through message boards and forums. Alz connected is great for people who are computer-savvy and who need to connect with others virtually. Check out the latest caregiver’s forum HERE.

Other, less free ways to get help and support:

  • Geriatric care managers:  When situations are complex, when family dynamics are difficult and when caregivers are far-away from the person with the diagnosis, a geriatric care manager can really save the day. This person is usually a Master’s-level social worker or Geriatric-professional and often has a medical or nursing background too. Case management, care planning and in-home assessments are just a few of the services that they may offer. You can find a care manager near you by visiting the Aging Life Care website.
  • Respite Care – Nothing beats a break. It’s important, it’s necessary and if you’re a caregiver, you deserve one. You can use our online Community Resource Finder to locate home care agencies or you can call us directly (800-272-3900) to get a listing sent to you for your area. If you need financial assistance for respite care, then definitely give us a call to see if there are any respite programs available in your area. You may also want to check with your local Area Agency on Aging and County Senior Services offices for respite programs in your area.

Stay Tuned! More to come on practical coping mechanisms for caregivers.

 

Support Group

Caregiver Coping Part 2: Prepare for the Worst

* This is the second installment in a series where we will be discussing some realistic ways that Caregivers can cope with the stresses of care-giving.

None of us like to think about the worst case scenario if we don’t have to.  In fact, most of us who are caregivers think that the worst case scenario has already happened. Isn’t the diagnosis and continued deterioration of my loved one’s mind as bad as it can get? What could possibly be any worse?

Unfortunately, it can get a lot worse. The list of things that could go wrong is long and terrifying: people with dementia can get lost; on foot or driving a vehicle; people with dementia may lose or give away thousands of dollars; people with dementia may be unsafe at home and risk being involved in medication mismanagement, house fires, falls or firearm accidents. As the disease progresses, people with dementia are more and more at risk. Being prepared for what may go wrong is smart, safe and can also be empowering for you as a caregiver.  The good news is that there are plenty of things that you can do to prevent a worst-case-scenario. Don’t wait for something bad to happen – take action NOW!

Where to begin? If you haven’t already read it, take a look back at step 1 – getting educated. Start by learning about what safety risks and dangerous circumstances may exist and then you can get started figuring out how to prepare for and prevent those incidents.

Here are some of the most common safety concerns we see:

  • Driving: Driving is one of the toughest issues for families to talk about, and many people wait too long to bring up the subject with their loved one. We have some excellent videos online that show four different families having the driving conversation with a loved one with dementia. Check those out HERE. Georgia also has several driving assessment centers and the Georgia Chapter can give you information about where to find those. Give us a call at 800-272-3900.
  • Legal & Financial Planning: Again, this is an area where you really need to act right away in order to accomplish the necessary tasks while the person with dementia is still able to understand them. Ensuring that power of attorney forms are signed, copies made and in the right hands and advance estate planning for future healthcare costs have been considered will not only ease your mind now, but prevent you from having to operate in crisis mode in the future. Learn more about what legal and financial affairs you should be considering HERE, and call us at 800-272-3900 to get a listing of elder law attorneys near you, or to ask additional questions.

  • Home Safety: Home safety can include fire safety, fall safety, medication safety, firearm safety and many other items that require a person to be able to exercise good judgement and reasoning in order to be safe. This is especially important to consider if you are caring for a loved one who is still living independently/alone. Take the time to review our Home Safety Checklist and get in touch with us if you have any questions.
  • Wandering – Six in 10 people with dementia will wander. A person with Alzheimer’s may not remember his or her name or address, and can become disoriented, even in familiar places. Wandering among people with dementia is dangerous, but there are strategies and services to help prevent it. Medic Alert/Safe Return is an ID jewelry program that can help you prepare for a wandering incident and the Georgia Chapter has grant money to help pay for it! Call us and ask how you can sign up: 800-272-3900. Read more about wandering prevention HERE.

Being prepared when a crises strikes is extremely important, but preventing a crisis is invaluable. Get educated on the risks, dangers and ways you can prevent crises now. As always, call us with any questions: 800-272-3900.

 

Stay Tuned! More to come on practical coping mechanisms for caregivers. Next week we’ll take a week off from caregiver coping because we’ll be participating in Georgia’s Annual Alzheimer’s Awareness Day at the State Capitol. For more information, or to get registered to attend as an Advocate, sign up HERE! 

Caregiver Coping Part 1: Education

* This is the first installment in a series where we will be discussing some realistic ways that Caregivers can cope with the stresses of care-giving.

 

When you become a caregiver – whether it be sudden or gradual – there is typically a pretty significant learning curve. All of a sudden, you may be expected to know not just about your loved one’s preferences and routines, but about insurance, long-term-care options, behaviors, physical changes, medications, hospice, legal and financial matters, etc. The list of things that you don’t know you don’t know just seems to get longer and longer. Many caregivers end up constantly in ‘survival mode’ – one step behind the next change and/or crisis. That’s normal, but there is a better way!

I know what you’re thinking! “I don’t have time to sit in a class and learn what I probably already know or learn what I may never need to know!” Or perhaps,  “I don’t see how learning MORE about this terrible disease is going to help me feel LESS stressed out!” Or maybe even “I don’t want to know what comes next – it’s too hard to know.”

I hear you. Almost every single thing about this disease is hard. But I promise that the more you know, the better you can cope with the different aspects of what’s ahead. The more familiar you are the disease and what changes in mood and behavior might occur, the less you’ll be thrown if and when they do. If you have a good sense for how this disease progresses then you can potentially trust yourself a little more when it comes to decision-making, identifying red-flags and planning for the future. You can also manage your expectations for your loved one, which will alleviate some major frustration. Getting educated about Alzheimer’s Disease and how to plan for things to come may feel overwhelming at first, that’s only natural when there is so much to learn. Ultimately though, our goal is for you to feel empowered and better prepared to respond to tough situations with an arsenal of knowledge and support in hand.

So where to begin? Here are a few education resources for those who like to learn with others, individually, online or the old-fashioned-paper-way. I believe that there is something here for everyone:

  • In-Person-Education Classes with the Alzheimer’s Association

The Alzheimer’s Association, GA Chapter has 7 regional offices around the state. Those offices regularly organize and provide in-person trainings for family caregivers and professionals. The best place to see what’s happening in your neck of the woods is by checking our website: alz.org/georgia . (Click here to go directly to our education calendar). 

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  • Online Education Options

Did you know that the Alzheimer’s Association has a nationally recognized award-winning website that is chock-full of information? It’s true. Everything from symptoms and diagnosis to behaviors and common myths and a million things in between. You can even take an interactive tour of the brain! Check out Caregiver Center to get tips on how to be a healthy caregiver, how to respond to specific behaviors and take the caregiver stress test!

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  • Educate Yourself the Old Fashioned Way with Books! 

Not interested in reading lots of information online? No worries, there are plenty of printed materials to help you get started! The Alzheimer’s Association has a recommended reading list, which can be found HERE and which is organized by topic. We have written about great book options for caregivers before; take a look back at that post HERE. Finally, the Atlanta office of the Georgia Chapter has a library of books in-house if you need us to ship you one, just give us a call!

 

  • Call Us With Questions – 800-272-3900

This won’t be the last time you see the Helpline number posted in this series. The Alzheimer’s Association is so dedicated to you not going through this experience alone, that they have staffed the Helpline 24/7 with Master’s Level Social Workers and Counselors (called Care Consultants), who want to help you get the information, resources and support you need. Have a specific question about a loved one’s behavior? Give us a call. Not sure where to turn for a listing of financial planners or elder law attorneys? Give us a call. What’s the difference between Medicare and Medicaid again? Give us a call! We are here to help, 24/7, however we can!

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Stay tuned for next week’s follow-up: Caregiver Coping Part 2: Prepare for the Worst

“People Tell Me to Take Care of Myself…Yeah Right!”

Caregiver Stress

Caregivers hear it often – “You should take care of yourself!”

“Well how, exactly, am I supposed to do that?”, many caregivers wonder to themselves as they politely smile and nod. It’s true. It seems impossible. Care-giving is not just a full-time job, sometimes it is a bunch of full-time jobs. Are you the nurse? The driver? The housekeeper? The food and personal necessities shopper? The appointment scheduler for doctors, lawyers and resource providers? Are you the accountant and bill-payer? In charge of home and vehicle maintenance? Hopefully you don’t have pets or dependents to look after and heaven help you if you’re still trying to work a full or part-time job! Odds are, that “taking care of yourself” is not high on the priority list.

The reality is that for a lot of caregivers, there is hardly any time for self-care. It isn’t unusual for caregivers who finally get an hour or two to themselves to be unsure what to do with that time. These experiences and feelings are normal and it can take practice to know how to un-wind after being in survival mode for an extended period of time.

Over the next few weeks we are going to explore various ways that caregivers can cope with the stresses of caring for a loved one and within those coping mechanisms, ways that caregivers can ultimately help care for themselves. Stay with us! If you’d like to be alerted to new posts via email, click “Subscribe to This Blog” on the right side bar of your screen.

 

 

Not sure if you’re stressed? You probably are! Check out our Caregiver Stress Check online at: http://www.alz.org/care/alzheimers-dementia-stress-check.asp

This is our Thanksgiving. It’s not perfect, but it is precious

When a loved one has dementia, you lose so much. In fact, sometimes, it seems that every day, every encounter is just one loss after another.

Visits with mom are best when we are doing something: looking at photo albums, walking around the mall, working in the yard. Sitting around and making conversation doesn’t go so well anymore. So this morning we raked leaves. And in the midst of all the losses I feel when I’m with mom, I found much to be thankful for.
“We raked leaves” is not exactly true. I raked leaves; mom put the rake down and picked leaves up one at a time to place on the tarp. “Wouldn’t you rather use the rake?” I urged. Efficiency was my goal.

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“Look at this one, how curvy it is!” Mom exclaimed, holding up an ordinary dry brown leaf. “I should keep this one, and this one too!” The other leaf she was holding was smaller and round. Her pleasure was tangible, her joy contagious!


Suddenly I was transported back to the days when I would rake the yard with my own preschool-aged children. There was delight in their work, constant discovery in their actions, simple joy in living. They would laugh and play as we raked, noticing things I was too busy to see. Those are such happy memories to recall!


Then mom spoke again. It was an irrational complaint about the neighbors, the neighbors she doesn’t even know. This is the dementia speaking, a script she repeats frequently, utterly ugrounded in fact but as real to her as the crunchy leaves under our feet. My emotions whiplashed from her sweet pleasure in the shape of the leaves to the horribly frustrating clutches of her disease.


Not wanting to deal with the present, I directed my thoughts back to the warm memories of raking with my young children nearly a decade ago. And that’s when I remembered: Raking with preschoolers wasn’t all together easy or fun. They would mess up the neat piles I made, wet their pants, cry when they pricked their finger. Raking leaves with preschoolers was a constant juggling act, a challenge. And yet those were precious days.
And so are these. This is our Thanksgiving. It’s not perfect, but it is precious. Mom won’t always be able to do yard work. In fact, I think she may be picking up the leaves by hand because the coordination of using a rake is nearly out of her grasp. There are frustrations and constant reminders of loss. But look, if I don’t let myself get overwhelmed by the sense of loss, I will see her joy in the present.


“Look mom, see how big this one is!” She thinks she will save that one for her collection too. It is a happy Thanksgiving after all.

 

Rev. Kendra Grimes Swager is an ordained Elder in the United Methodist Church and currently serves as the Chaplain and Director of Church Relations at Randolph-Macon College in Virginia. 

The Alzheimer’s Association, Georgia Chapter Welcomes Local AKA partners

Welcome Alpha Kappa Alpha, Sorority, Inc.®

The Alzheimer’s Association, Georgia Chapter is proud to announce a new partnership with Alpha Kappa Alpha Sorority, Inc.® to help raise awareness about Alzheimer’s disease and increase education, care and support resources in the African-American community.

On Thursday, October 29, the Georgia Chapter celebrated this new partnership with a kickoff event at our Chapter office. The following local chapters were represented: Rho Zeta Omega, Psi Alpha Omega, Tau Pi Omega and Tau Epsilon Omega.

AKA

African-Americans are twice as likely to develop Alzheimer’s and other dementias, however they are less likely to be diagnosed, or diagnosed at a much later stage. This partnership will help the Association better connect African-Americans with important Alzheimer’s information and support.

Alpha Kappa Alpha, the nation’s oldest African-American sorority, is a trusted source of information within the African-American community. Members of Alpha Kappa Alpha will work with the Metro Atlanta Alzheimer’s Association chapter to better engage the African-American community in the full mission of the Association. This may include:

  • Connecting the Alzheimer’s Association to community partners, businesses, contacts and churches to open the doors for Alzheimer’s education, care and support
  • Volunteering for Alzheimer’s Association events, activities and planning committees
  • Becoming a trained Alzheimer’s community educator or support group leader
  • Becoming an Alzheimer’s Association advocate

The Alzheimer’s Association, Georgia Chapter is elated to be working with Alpha Kappa Alpha to better reach, educate and engage the African American community in resources. This partnership will connect the African-American community in the Metro Atlanta area to education, care, support, research and advocacy programs that are so important for individuals and families impacted by Alzheimer’s disease.

Your Hidden Resource Center: The Alzheimer’s Association

Did you know that the Alzheimer’s Association, Georgia Chapter offers a wide range of publications designed to meet the unique needs of families caring for people with Alzheimer’s disease and related dementias? We have literature and books that are designed to help people who have been diagnosed, family caregivers, professional caregivers and even kids/teens.

Brochures Galore!

We have many many brochures to choose from!

Brochure Topics include but are not limited to:

Basics of Alzheimer’s Disease

Know the 10 Warning Signs

Caregiver Stress

Caregiver Center Information

Behaviors

Communication

Money Matters

Legal Plans

LGBT

I Have Alzheimer’s Disease

Younger Onset

Driving

Staying Safe

Facts & Figures

Alzheimer's Library

A snippit of our Alzheimer’s library- something for everyone! Call us 800-272-3900 to learn about buying or checking out books!

Books, Media & Lending Library include but are not limited to:

36 Hour Day
Coach Broyles Alzheimer’s Playbook

Living Your Best with Early Stage Alzheimer’s

Chicken Soup for the Soul

What’s happening to Grandpa?

 

Of course we also have a wealth of information available online at http://www.alz.org.  So much information can be very beneficial, but also overwhelming. If you’re struggling with something specific or need certain topical-information, please give us a call at 800-272-3900 to discuss. We’re happy to do all the foot-work for you and send you the brochures, books and/or online resources that will best meet your needs. We’re here to help! Give us a call anytime, 24/7 at 800-272-3900.