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). 

Adult-Class-mix1

  • 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!

alz.org capture

 

  • 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.

rake-leaves
“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.

 

 

Living and Loving with Alzheimer’s Disease: Kim’s Story

kimand phil

Phil and Kim Wilson have been happily married for seven years. Their home in Rome, Georgia is recognizable for its well-tended garden, ablaze with vibrant colors. Kim’s children live nearby along with her grandchildren – 3 boys: Mason, Oliver and Dexter. Phil and Kim have a close-knit family and a wide circle of friends and colleagues, but 18 months ago Kim’s husband and her friends began to notice some unusual changes in her behavior.

Kim too, was noticing that something was not quite right. “Honestly I think it was when I was still working, that was when it got me a little bit torqued out and I just couldn’t handle the stuff that I needed to do, and I found that to be very hard for me, and I’m like, what’s wrong with me? When I did not have a job I would stay at home most of the time. I felt like I was very cloistered. Sometimes it was very frightening, because I would have to think first, and listen internally and then it was almost like boom, I woke up again. I was asking myself, what is really happening with me? ”

Phil explained that the first time he really noticed something different was when he visited Kim on a lunch break with some of her colleagues, and she didn’t really appear to know where she was. After this, he began to add things up that he hadn’t really paid attention to before.

“Last Thanksgiving,” said Phil, his voice thick with emotion, “is when it probably hit us all. Kim has always cooked Thanksgiving dinner, always. She gets out Aunt Jean’s recipe book and follows it to a T, and just charges through it.” But sadly, this last holiday, was very different. “She opened the recipe book and burst into tears because she could not follow a recipe. She could still do the cooking, but I had to prepare all the ingredients for her.”

Kim’s children were also becoming increasingly concerned about her because they noticed that during conversations, she would get lost in sentences. “She would be half way through a sentence and would just stop, and just wouldn’t know where she was coming from. She would say opposite words, instead of saying day, she’d say night, instead of in, she’d say out,” said Phil. “We sat down with Kim as a family group and expressed our concerns.  We were very worried about her; she’s one of the most brilliant women I’ve ever met in my life. I was worried that someone who was so switched on and so smart, could get stuck on such simple things.”

In March of 2014, Kim’s family physician recommended that they see a neurologist, and he and his team conducted a battery of cognitive, psychological and physical tests. At that time, the tests did not indicate that Kim was suffering from Alzheimer’s disease. “Each time we got the results of a test,” said Phil, “we were going yes, yes! It’s not Alzheimer’s.”

But at the same time, the physicians were unable to find the cause of Kim’s symptoms. The final verdict came in March 2015, when local neurologist, Dr. William Naguszewski performed a lumbar puncture (also known as a spinal tap). This test examines cerebrospinal fluid – the liquid that bathes the brain and spinal column – for changes in two important proteins. These changes may indicate the early stages of Alzheimer’s disease[1]. The results of Kim’s lumbar puncture were positive for early onset Alzheimer’s disease.

A subsequent series of MRIs revealed that Kim had also experienced a series of mini-strokes, which are the result of blood clots blocking blood flow in the brain. This condition, though relatively common for anyone over 50 years, can lead to a form of vascular dementia, which may have been what initially steered the doctors away from a diagnosis of Alzheimer’s.

In July 2014, Dr. Naguszewski referred the Wilsons to Emory University Hospital, in Atlanta, to meet with Dr. Alan Levey, Professor and Chairman of the Department of Neurology at Emory University, and Director of the Emory Alzheimer’s Disease Research Center. Dr. Levey concurred with Dr. Naguszewski’s diagnosis of Alzheimer’s.

Kim is still being treated by Dr. Levey and his team. She has recently been invited to participate in a Dian-Tu study[5]. This 2-year prevention trial targets individuals who have a family history of a type of Alzheimer’s caused by gene mutation. This is particularly relevant for Kim since her great-grandmother, grandmother, aunt, and father, all suffered from Alzheimer’s disease. The ultimate goal of the research is to isolate the genetic mutation so that a bio-marker for Alzheimer’s can be identified in children at risk.

“It’s important to me (to be part of the study) because I’m trying to do this for me, and for other people and for my children and grandchildren,” said Kim.

Although Kim is well aware of the symptoms and risks of her condition, she retains a positive outlook for the future. “I would like to think that the next day is going to be a great day, but sometimes it is very, very hard. Sometimes I get to the point where I want to just go and sit down and have a big squall. You just never know. It’s the dynamics that are so hard. It’s like a tornado. It comes in and then it goes. When it happens you’ve got to roll with the punches, other than that I’d just be sitting in a corner all my life. I don’t want to do that.”

To remind her of how much she is loved, Kim’s daughter bought her mother a poster, which hangs on her kitchen wall. It reads: Always remember you are braver than you believe, stronger than you seem, and smarter than you think, and twice as beautiful as you ever imagined yourself to be.”

Being a caregiver also takes its toll, and though Phil is hopeful that a cure for Alzheimer’s will soon be found, looking down the road to his future with Kim can be daunting. “My biggest fear is that a cure is not going to be had, and I’ll come home one day and Kim won’t know who the hell I am,” said Phil. But whatever the future may hold, one thing is certain, Phil and Kim Wilson will continue to love each other while living with Alzheimer’s.

Kim’s disorder has currently progressed to the point where she has difficulty with mathematics. She is challenged with hand writing, telling the time, and she sometimes has moments of general confusion. However, she has a message of inspiration for anyone who is going through the same thing as she is right now: “Be strong, carry on, don’t let it get you down. You have a life right now, so it’s very, very important to live that life as long as you possible can, just one day at a time. It makes something for everybody else, that’s what’s important. Yes, this is a sh**y thing that has happened, but I’m still alive and as long as I’m still alive I will keep movin’, and goovin’, as long as I can. Let’s go, wherever it is we’re going to go, let’s keep moving.”

On November 14, 2015, Kim and Phil, their family and friends will be keeping it moving in the Walk To End Alzheimer’s. The event will take place in Rome, Georgia and throughout the United States, with participants raising money for the Alzheimer’s Association[6]. You can find more about participating in the Walk To End Alzheimer’s and how to make a donation here.

  • Corinna Underwood: As well as being a long-time friend of Phil and Kimberly Wilson, Corinna Underwood has been a freelance health writer for fifteen years. She has been published in many outlets worldwide. She is also the author of several fiction and  non-fiction books. You can find out more about Corinna and contact her here.

[1] http://www.alz.org/research/science/earlier_alzheimers_diagnosis.asp#Cerebrospinal

[5] http://www.dian-info.org/

[6] www.georgiawalk.org/

 

Guest Post: Accepting a Diagnosis of Dementia

Featured image

My mother-in-law’s diagnosis of dementia forever changed the lives of everyone in our family. I remember sitting with my husband in a row of metal chairs along the hallway in the medical facility while she was being examined by a geriatric neurologist. It seemed to take an eternity. Finally the doctor emerged from the scan room and told my husband and me, “She has significant brain shrinkage indicating dementia or Alzheimer’s disease. There is not much we can do at this point. There are medications, but their effectiveness is questionable. Her situation is progressive and will probably worsen over time.”

Neither one of us was surprised. Our concerns had finally been verified. Then two questions immediately came to mind. First, how were we going to provide her with the care she was going to need in the future? And secondly, how were we going to help Nan understand the reality of her diagnosis? It was in these mind-numbing moments that I began my journey into the complicated world of dementia care. Its complexities were unimaginable and I knew its future was unpredictable. And I was afraid; afraid for Nan and afraid for us. The only thing I knew for certain was that Nan’s cognitive skills were diminishing at an alarming rate and she needed help now.

Watching Nan slip down through the stages of dementia has been like witnessing two deaths simultaneously. I know this may sound emotional counterintuitive. Either someone is here or they are not. But this is not the case when someone suffers from dementia. A schism occurs between the mind and the body.

I don’t know when Nan began to separate from the world. I can’t put my finger on the time when her disease finally overtook her mind, and I don’t know if it even matters. But I do know that it seems to have happened in the blink of an eye, sometime when I wasn’t looking. Dementia will trick you like that. It distracts you with its initial symptoms that send you scurrying about on endless missions to solve daily problems and search for cures. It sneaks up behind its victims and snatches them while you are busy making sure that they are taking their medicine correctly and eating a balanced diet.

I wish I had a way to spare you the highs and lows of the acceptance process. I wish that I could catapult you past the pain and make you see the happiness that is possible even in the light of all that you are facing.  But I know that is impossible. So instead, through this blog I will give to the gift of the lessons that I have learned and hopefully, in the end, they will make all the difference.

 

Ronda Parsons

Ronda Parsons lives in Williamsburg, VA and is a caregiver to her mother-in-law who has dementia. She is the author of the book Creating Joy & Meaning for the Dementia Patient: A Caregiver’s Guide to Connection and Hope

 

This post originally appeared on Ronda’s blog: https://thedementiaconnection.wordpress.com/

For those of us who don’t love fundraising…

I am the first to admit that fundraising is not my strong suit. Which is exactly why I work on the programs and services team here at the Alzheimer’s Association and not on the development team. But as I’ve said time and time again, it is going to take ALL of us working together AND fundraising to bring an end to Alzheimer’s Disease.

So for those of you, like me, who would rather hide in the bushes than ask someone to buy your girl scout cookies (true story) – I have some great news. Charity Miles is an app that you can download that raises money for a cause of your choice (pick us! pick us!) and all you have to do is download it and get moving. Seriously. That’s it.

Charity Miles is backed by sponsors who donate 25 cents per mile for walkers/runners and 10 cents per mile for bikers. It’s a fun and easy way to raise money for the Association! This does not replace fundraising efforts for say, The Walk to END Alzheimer’s for example – so just think of it as icing on the cake. The easiest of your fundraising efforts in this fight.

I hope you’ll join in the fun, download the app and get moving! Instructions are below and more information is available at http://www.charitymiles.org/.  Please tell your friends and family too!

THANK YOU for your help in ENDING Alzheimer’s!

charitymiles

How it works:

  1. Download the free Charity Miles app to your iPhone or Android from the app store.
  2. Create an account by logging in with your email address or through Facebook.
  3. Choose the Alzheimer’s Association from the list of charities.
  4. Select whether you are walking, running or biking from the top activities bar.
  5. Press Start and get going.
  6. Walkers and runners earn 25 cents per mile; bikers earn 10 cents per mile, courtesy of sponsors secured by Charity Miles.
  7. When finished, swipe up on the screen and follow the steps to save your miles.
  8. If you’re grateful for the sponsor’s support, please be sure to thank them at the prompt on the screen.
  9. Spread the word! The easiest way to double your impact is to get a friend to join you!

To create or join a Charity Miles online team:

  1. Press the + button in the upper right corner of the screen.
  2. Type in the hashtag and name of the team you’d like to join or create.
  3. Anyone who tags themselves with the same hashtag will be on that team, and you’ll be able to see your collective impact and team leaderboard.
  4. You can join or create as many teams as you want.

Being a Long-Distance Caregiver

long-distance-caregiving

“Something is wrong with mom!”  The realization is frightening no matter where you are, but especially when you live far away from a loved one exhibiting signs of dementia. What can you do when you live hours away and a phone conversation with your loved one turns into a confusing jumble of past conversations or paranoid rants? Lately, I’ve had several conversations with long-distance caregivers embarking on this new and scary journey.

Recently I spoke with *Cassandra, a young woman who is her elderly aunt’s only living relative. Cassandra flies across the country fairly regularly to ensure that her aunt’s bills are paid, home is maintained and her medical needs are met. On her most recent visit, Cassandra arrived to find her aunt’s air conditioner broken, the house steaming hot and her aunt looking unkempt for the first time in her life.  Cassandra felt heartbroken, afraid, embarrassed and unsure of what to do next.

No two caregiving experiences are the same, but the feeling of helplessness is pretty universal when it comes to long-distance caregiving.  There are some signs that long-distance caregivers can be on the lookout for when they are speaking to loved ones or during visits:

  • Repetitive Conversations: Often one of the first things long-distance caregivers notice is that a loved one begins repeating stories in the course of a single conversation. Someone with worsening memory loss may also have difficulty following lengthy conversations.
  • Trouble with finances: Are bills going unpaid? How often does your loved one go to the bank to withdraw money? More than they used to? Check in about finances to see if you notice any red flags in that area.
  • Medication Usage: When you visit, can you tell if medications have been taken every day? If all of the bottles are still full, there may be a problem. Setting up a pill minder is a great intervention, if your loved one can remember to use it.

Like Cassandra, you may have already discovered that you are caring for someone with increasing needs.  You may also be trying to coordinate with other family members, near and far, to agree upon a caregiving plan. All of these challenges can be daunting, but the Alzheimer’s Association is here to help. Part of what I do is work with families locally to help develop a plan of care – everything from legal and financial planning to making referrals for home care, adult day care, living facilities and safety services. The other part of what I do is provide education and training about the disease process – this is especially important when there are lots of caregivers involved. It is nearly impossible to get everyone to agree to a plan of care if everyone can’t agree on what the problems are to begin with! And finally, I am here to provide emotional support to you on this journey and to help you widen your network of support. Caregiving is often an isolating experience and it doesn’t have to be. There are plenty of support groups with people who have been there, or who are there, and who can help you get through this.  Whether you are local or long-distance, caregiving takes a mental, emotional and often times physical toll.

Here are some quick tips to get you started in the right direction:

  • Identify resources and use them.
    Learn about what is available in your community by contacting your local Alzheimer’s Association at 1.800.272.3900 or using our online Community Resource Finder. You can also use Alzheimer’s Navigator, our free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.
  • Reassess care needs during each visit.
    Dementia is a progressive disease, and care will need to be adjusted over time. While someone in early-stage Alzheimer’s may live independently, by the middle stage, 24-hour supervision will be required. Each time you visit, assess the situation to make sure care needs are being met.
  • Keep communication going.
    As a long-distance caregiver, you may coordinate many moving parts. Whether it is with family, neighbors or home health aides, set aside time to regularly discuss the needs of the person with dementia. If the person with dementia lives at a residential care facility, set up a regular time with the managing nurse or physician to get updates and maintain ongoing communication with care staff and friends who visit regularly.
  • Gather pertinent information and keep it handy.
    Make sure you have contact information for physicians, pharmacies, care providers and neighbors, as well as important financial and legal documents easily accessible in case they are unexpectedly needed.
  • Be kind to yourself.
    Living out of town does not mean you aren’t involved or that you don’t care. Get support by connecting with others who are long-distance caregivers through our online community.

LEARN MORE: https://www.alz.org/care/alzheimers-dementia-long-distance-caregiving.asp

The Alzheimer’s Association can be your partner in care. Don’t walk this journey alone. Contact us 24/7 at 1-800-272-3900

*Some details of the families are altered to protect their privacy.