Finding Rays of Joy in the Dark Clouds of Alzheimer’s

Joy & her father, 2011

Joy & her father, 2011

As an admitted pessimist, I watched with a heavy heart as Alzheimer’s crippled my dad’s mind and body. On one visit home, my dad restlessly paced the living room floor, then suddenly stopped in front of the couch where my mom and I were sitting. He asked, with complete sincerity, “Where’s Jane?” My mom’s name is Jane, and my parents were married for 40 years. I felt like someone had punched me in the gut. My mom remained calm, obviously used to this line of questioning. She simply responded, “I’m right here.” Mom’s strength as my dad’s primary caregiver continued to amaze me throughout my dad’s battle with Alzheimer’s. After breaking her shoulder due to a fall no doubt caused by exhaustion, she still boarded a bus for the hour-and-a-half trip each way to visit my dad in the memory care center he was residing in at the time, her arm wrapped in a blue sling. Mom also taught me about the power of laughter, even in the darkest of times. Any time my father would do or say something humorous, she would let everyone know, from the nursing home staff to family members. Sharing these funny little stories boosted her spirits and she spread that joy to others, brightening their day as well. When I saw submissions were being accepted for a special fundraising edition of “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias,” I knew I had the perfect story to submit. If you want to read my story, “French Toast,” and all of the inspiring and moving stories included in the book, please purchase a copy at your local or online book retailer. The book goes on sale todayApril 22, 2014. All royalties benefit the Alzheimer’s Association. It’s not easy finding those moments of joy when you are caring for a loved one with Alzheimer’s. Some days will indeed be very dark. My mom’s actions as a caregiver certainly proved  how laughter can help soothe the sadness associated with Alzheimer’s. But it was something my father said to me, on that same fateful visit when he did not recognize my mom. He told me, “You have to keep your sense of humor.” That’s a message I hold near and dear to my heart every single day.

Chicken Soup For the Soul: Living With Alzheimer's and Other Dementias

Chicken Soup For the Soul: Living With Alzheimer’s and Other Dementias

Joy Johnston is an experienced digital journalist who has been producing online content since 2002. Her father’s death from Alzheimer’s complications in 2011 inspired The Memories Project blog, which was featured on NPR. Joy lives in Atlanta with her partner, two spoiled cats, and a goofy pit bull.

The Next Generation in the Fight Against Alzheimer’s!

Esha and her Display Board

Esha and her Display Board

When she was a young child, Esha Sunthankar realized that her grandmother, Kalan, was not the same person that she used to be. Esha didn’t get to see her grandmother often, since she lived in India, but Esha still realized that things were changing. Her grandmother had been diagnosed with Alzheimer’s Disease. “It was hard seeing her forget and stop doing the things that she used to enjoy doing” says Esha. Kalan passed away in 2011, but her memory lives on. Today Esha is a bright and cheerful 13-year-old 8th-grader. Recently she participated in a project at school called “Project Impact.” For this assignment Esha and her partner (MacKenzie – another student who’s great-grandmother is currently living with Alzheimer’s Disease) chose to focus on Alzheimer’s Disease. They created a project board and wrote a report about Alzheimer’s Disease. Esha says that through her research she learned that Alzheimer’s was a type of dementia and was surprised at the prevalence of the disease. “I thought it was kind of a rare disease, but now I know that it is really common.” Next, they participated in “Market Day” where they shared brochures and information with all of the students in their school and sold items to raise money for their cause. Esha and her mother made handmade Alzheimer’s Awareness ribbons (see below) to sell along with t-shirts and bracelets. Esha and MacKenzie raised the most of any individual group – $250 – which they donated to the Alzheimer’s Association, Georgia Chapter.

Handmade Ribbon

Handmade Ribbon

We are THRILLED and so proud to see Esha’s accomplishments and dedication to increasing awareness about Alzheimer’s Disease to her peer group. It is so encouraging to see such a young generation take an interest in joining the fight to End Alzheimer’s ! Thank you Esha and MacKenzie, you’re an inspiration to us all!

Adult Day Programs for Persons with Dementia

Adult Day Activity Center

We humans are all social creatures.  We like to see some friendly faces, share a meal, and share a laugh with others.  That doesn’t change when a person has dementia.

The problem is, having dementia can be a very isolating experience.  The person is often not able to participate in activities in ways he or she once did.  And, many people with dementia begin to withdraw from activities they once enjoyed.  “I don’t feel like going to church today . . . maybe next week.”  The truth is that the person may fear embarrassing herself in a social situation.  No one wants to see the puzzled or disapproving looks on the faces of people who don’t understand why one couldn’t quite respond “normally.”  And, busy caregivers simply don’t have time to “entertain” the person.  All too often, the result is a bored and depressed person with nowhere to go and nothing to do.

For many, it doesn’t have to be that way.  Adult Day Services programs provide caring places where people with dementia can interact and enjoy activities.  These programs are different from many programs at Senior Centers; most Senior Centers are for older adults who are cognitively normal and can function independently.  Adult Day Services programs adapt their programs to meet the special needs of persons with dementia.  They have staff who understand how to make people feel welcome and accepted, exactly as they are.  They greet each person warmly and “make a fuss” so that everyone feels special.  Who wouldn’t want that?

If you are a caregiver reading this, you may be thinking, “That’s fine for others, but my Harry will never agree to go to a program like that!”  Well, Harry is in good company.  For people with dementia, anything new is generally greeted with “no!”  Understandably, most people with dementia seek the familiar, as they already feel vulnerable and fearful.

So, that’s our “starting point” – realizing that we’ll need to introduce something new in a thoughtful way.  Here are some pointers that may help with a successful experience with an Adult Day Services program:

Start by making a appointment to visit a potential program(s) without the person who has dementia.  This will give the caregiver an opportunity to see the program and ask questions and begin a plan.

  • Avoid “overselling” the program to the person (“You’re just going to love this place!”)  This approach may backfire.
  • A low-key approach is generally best.  A first visit might simply involve stopping by for a few minutes.  Staff might suggest coming for lunch or for an activity.
  • Realize that the person may need to attend for a time, in order to begin to feel comfortable.  Don’t space visits too far apart.  With short-term memory loss, it could feel like starting over each time.
  • If, after a visit, the person says, “I’m never going back there again,” don’t argue, but don’t give up.  Allow at least three visits for the person to begin to feel comfortable.
  • Some people respond well to the idea that they are attending as a “volunteer.”
  • Let staff help.  They will meet you more than half way.

 

   For more information, call our Helpline at 1-800-272-3900, during business hours.  Staff will be glad to help you find programs in your area and talk with you about how to have a successful experience.

Difficult Conversations: Driving and Dementia

Hands on Wheel

It is the very conversation that so many of us dread having – when is it time to tell a loved one that driving is no longer a safe option?  Or perhaps we are navigating those waters on our own – you have been given a diagnosis of dementia and feel that you’re still okay to drive, but want to be cautious and safe. How do we know when the time has come to have “the talk” with a loved one, or with ourselves?

The following list provides warning signs that it may be time to stop driving:

Forgetting how to locate familiar places

  • Failing to observe traffic signs
  • Making slow or poor decisions in traffic
  • Driving at an inappropriate speed
  • Becoming angry or confused while driving
  • Hitting curbs
  • Using poor lane control
  • Making errors at intersections
  • Confusing the brake and gas pedals
  • Returning from a routine drive later than usual
  • Forgetting the destination you are driving to during the trip

This is one of the most difficult conversations for many families. Driving equals independence for so many of us, especially here in the United States. It is often a celebrated right of passage that marks our freedom and “adult hood.”  Fortunately, there are LOTS of resources for helping families with this process. The Alzheimer’s Association Caregiver Center online contains the following resources related to driving:

  • Details about how to have the conversation and 4 sample videos that demonstrate how that conversation may go
  • Tips for planning ahead
  • A link to Driving evaluation and assessment centers
  • Topic sheets on safety and driving
  • A link to alternative transportation options
  • A sample “driving contract”

Visit the Caregiver Center Dementia and Driving page by following this link: http://alz.org/care/alzheimers-dementia-and-driving.asp

 

 

Meet the Forget-Me-Nots! : Carol Moore

Carol Moore, volunteer extraordinaire!

Carol Moore, volunteer extraordinaire!

The Forget Me Nots club is a group of people with early stage dementia and their care partners which has been meeting once a month for well over ten years now!  The club meets at a different restaurant in the metro Atlanta area every third Wednesday to socialize, eat good food, and just have fun.

We will be having a recurring segment in this blog called Meet the Forget Me Nots!  to introduce you to some of our fabulous members.

First up is Carol Moore, who was diagnosed with early stage Alzheimer’s in 2012.  Carol retired from government work (Including the Social Security administration) after 30+ years, and has two children and a grandson.  She has lived in Atlanta for over 30 years.

Carol says that for several months after her diagnosis, she withdrew.  “I was experiencing a lot of emotions—sadness, confusion, fear—and didn’t know what to do; I felt lost. Then one day I decided I really needed to move forward.  So I called the Alzheimer’s Association, and  I am so grateful that I did!”

Carol got connected with Susan Formby, a care consultant at the Association, and started seeing her regularly for counseling.  Their sessions focused on how a person can live fully, with purpose and meaning, after a diagnosis.  From there she got connected with other early stage programs, like the early stage support group, our peer support program, and the Forget Me Nots.  Carol has also gotten involved with our advocacy efforts, and has spoken to the media about her journey.

Carol says the Forget Me Nots gatherings are a great way to meet other people who understand what it is like to live with memory loss.  “The lunches give me an opportunity to meet other people who are going through the same thing that I am, to laugh and socialize, and not have to worry if I can’t remember a word!”  she says.  “It’s a wonderful bunch of people.”

 

Dear Helpline: How do I convince Mom that she needs the caretakers that we have hired for her?

Dear Helpline,

My mother, who is in the early stages of Alzheimer’s, lives in another state and I am here in Georgia. I have hired caretakers for her for several hours during the weekdays to help her run errands, make meals and do other tasks that she is no longer able to complete on her own. On the weekends another family member checks on her. She is cordial to the caregivers but every time I speak with her, she laments and fumes about how she doesn’t need the help. I have explained to her that she isn’t able to do things on her own anymore, but I don’t seem to be getting through to her. 

Please help, 

Frustrated Daughter

_DSC9538

Dear Frustrated Daughter, 

If it makes you feel any better, this is a very common experience. It is probable that there are a couple of reasons your mother doesn’t think that she needs any assistance from caretakers: 1) She honestly does not know that she can’t do the things she used to be able to do and  2) Even if she has an inkling of her changing abilities, she doesn’t want to lose her independence. She is likely in a very frightening place – maybe aware that something is a little “off” but not sure what it is, struggling to do things that used to be very easy for her, and fighting to maintain dignity and independence. And why is it that you are the lucky family member who gets to field all of the complaints? Well, you’re very likely someone that she feels close to and safe around – safe enough to know that if she tells you what she really thinks, that it will be okay. 

So what to do? First I would recommend that you listen. Listen to her frustrations and validate those for her. You might try something like “Mom, I hear how upset you are about having caretakers in your home and I’m so sorry that you’re upset.” Let her express her feelings and let her know that you really hear her without trying to argue or provide reason for your own position. That can be the hardest part, but it is one of the most important things you can do. Validating her feelings and then saying “but, you have to have care because…” negates what you just did to help her feel heard.

If your mother does demand an explanation for why the caregivers are needed, you may consider explaining that you worry about her because she is so far away. That these caretakers give you piece of mind since you cannot be there to check on her yourself. Be willing to be the bad guy and take the blame. It’s probably going to be much easier for her to accept that you are the reason she needs caretakers rather than because she is incapable of doing things on her own. 

Finally, be ready to redirect. After you have listened, validated and taken the blame (if needed), redirect her towards an activity or topic that she enjoys. This will take a little detective work on your part and you may want to make a list of her favorite things so that you have many ideas ready to try. The redirection is important because it gives some closure to the conversation and allows for a follow-up experience that is positive. Maybe this means going for a walk, going shopping, talking about a happy memory or helping her make her favorite tea. There are likely many things that can help create a positive transition away from the conversation at hand. 

In closing, these recommendations are by no means a one-size-fits-all solution, but instead a good starting place. Remember that the person you are caring for is a unique individual and the more you know about them and are able to empathize with how they’re feeling, the better equipped you’ll be as a caregiver. Also remember that you can call our helpline 24/7 if you need to speak to a counselor for any reason! 800-272-3900

Alzheimer’s Awareness Day at the GA State Capitol

Advocates Cross the street to the Capitol to meet with Legislators

Advocates Cross the street to the Capitol to meet with Legislators

Last Thursday was windy and cold. In fact, I admit that I ran from the parking lot to Central Presbyterian church because the wind was so shocking. But when I got inside the church doors, it was awash with warmth and excitement. Advocates began arriving shortly after 8 a.m. from all over the state: Albany, Augusta, Dalton, Savannah, Macon, Columbus and of course, the Atlanta area. Some had spent the night in town the night before, some had gotten up at 4:00 and rode on a bus with other advocates to arrive but ALL had given of their time and were there for a reason: Alzheimer’s.

Currently, Alzheimer’s has no cure and very few treatments. It does not just “infect” one person and then quietly go about it’s business of destroying that one life. It changes everything for the family and friends of the diagnosed as well. Alzheimer’s is unpredictable and cruel and cannot be contained. Alzheimer’s is an epidemic. Alzheimer’s is everyone’s concern. Especially our law-makers.

So these bold advocates reminded and educated their legislators about the crisis that is Alzheimer’s. They told their own stories of diagnosis and fear and loss. They were the face of Alzheimer’s to the staff that they met with. They encouraged their legislators to pass bills that would assist in the development and delivery of services to those diagnosed and their caregivers. But more than anything else, they expressed a hope for a better future.

I think that is the part the is the most remarkable to me about the whole day. Not that people would come together from all over for a cause – though I am thankful that they did. And it’s not that they would advocate for what they feel is important – but again I am thankful and more voices are always needed. It’s the hope – in the face of hopelessness – that is what I found so amazing during this day. No one would have come if they hadn’t felt hopeful that a better future was possible. A future that would include more support and services. A future where the word Alzheimer’s does not just strike fear or conjure up the image of a nursing home patient, but instead recalls a name – a face. A future where everyone is working to find a cure.

So often with this disease, we feel not only hopeless but helpless. These Advocates reminded me that we are neither. There is much more work to be done and more voices to be raised. But we are many and we will continue to work for a better tomorrow.

Thank you Advocates for another great Awareness Day!  

Lee White, Board of Governors Chair, speaks to Advocates from around the state

Lee White, Board of Governors Chair, speaks to Advocates from around the state

Alz Awareness Day

Governor Deal poses with Alzheimer’s Advocates from around the state.

Alz Awareness Day

Advocate Nancy Moe speaking with Dr. Brenda Fitzgerald, Commissioner of the Georgia Department of Public Health.