I Will Not Give Up This Fight

Hi my name is Dee Anna Simpson, I am 51 years old, just recently married my best friend, Mike, and one of my biggest supporters. I’m also a mother of 5 and grandmother of 4 and great grandmother of 3…So here is how I got here! When I was around 28 years old, one of my Aunts was diagnosed with Alzheimer’s. Then in April of 2009, my own mother was diagnosed with the same dreaded disease. My mother, my best friend, my go to for strength, lost her battle with it in September of the same year. So for 5 months I watched a once strong vibrant woman, slip away from me with each passing day she would lose more and more of herself to this horrible disease and she was not able to remember those around her.

Growing up, my mother was the strength and backbone of our family, she was an amazing mother with a grand sense of humor, but as I watched her slowly change and become angry and frustrated with every day things. Plus, she was battling Parkinson’s as well so it did not make things any easier for her. She became a very fragile woman, and I saw she would try so hard to do things but couldn’t. It never stopped me from helping her to dress herself and bathe herself but 5 months she no longer knew anyone and was bedridden and stopped talking and eating and would not open her eyes. On September 29th, 2009 she gave up and lost her fight, but that is not the end of my story because in June of 2020, I myself was diagnosed with early onset Alzheimer’s. I never thought the strength I gained from her as she slipped away would one day help me to deal with this disease again.

All to often do we forget what is truly important in our lives and since dealing with this disease I have realized that the most important thing is family and time and those moments and memories we make with them. So if my short story can some how help just one person, whether it be a caregiver, the one living with it or the people behind the scenes who provides support, education or just a shoulder to cry on then I have done my job by sharing. So now I am doing all I can to stay focused and also to help my family to understand the different stages I will eventually go through, so like my mother I will not give up this fight for myself and so many others until I absolutely have too. I am very passionate about this and will do all I can to educate and participate until I can no longer do it.

Thank you all for reading this and I wish you all the best! Hugs and prayers!!! Stay strong!!! I am adding a few pictures. My Mother Judy and my father Ronnie, My new husband Mike and myself, Me with my two children my son and his wife on the right and my daughter and her partner on the left, two of my grandchildren and my smallest granddaughter…These are just some of my inspirations to keep going every day… Thank you!!!

– Dee Anna Sapp 

Keeping People Living with Alzheimer’s and other Dementias Safe and Engaged during COVID-19

The COVID-19 pandemic threatens the health of millions in this country and around the world, but the novel coronavirus presents unique challenges for more than 5 million Americans living with Alzheimer’s and more than 16 million family members and friends serving as their caregivers. Most notably, public health strategies aimed at limiting contact with others is nearly impossible for people living with Alzheimer’s and other dementias, who rely on family caregivers and others to live their daily lives. The Alzheimer’s Association is here to help families take the necessary measures to prepare for and cope with such extraordinary circumstances.

Tips for Alzheimer’s and Dementia Caregivers

Foster safe hygiene habits. People living with Alzheimer’s and other dementias may forget to wash their hands or follow other precautions to ensure safe hygiene. Caregivers are encouraged to be extra vigilant in helping individuals practice safe hygiene.

Monitor sudden or sustained behavior changes. People living with Alzheimer’s and other dementias may not be able to communicate if they are feeling bad or showing early symptoms of illness. Caregivers should monitor family members closely and respond quickly to any signs of distress, discomfort or increased confusion. These signs do not necessarily indicate a serious condition like COVID-19, but it’s important to determine the underlying cause.

Prepare for potential changes in care and support. As public health containment strategies for COVID-19 continue, families need to anticipate that less help may be available. It’s important for families to anticipate these changes and make plans for filling gaps in caregiving.

Be calm and create a nurturing environment. The current COVID-19 pandemic is creating added anxiety for everyone. Do your best to remain calm, particularly in your interactions with family members living with dementia. These individuals often take their cues from the people around them. Creating a calm environment will help them feel safe and protected.

Play gatekeeper with outside caregivers and guests. Carefully monitor who is coming into the home to ensure all who enter are healthy. Be proactive in asking outside caregivers and guests about their current health status and make sure they are not experiencing any early or recent symptoms of illness.

Ask residential care facilities about communication policies. To protect the health of residents, many facilities are restricting access to outside visitors. Ask the facility about alternative communication methods during the crisis, including phone calls, video chats or emails. If your family member is unable to engage in calls or video chats, ask the facility how you can connect with staff to get health updates.

Tips for Engaging People with Alzheimer’s/Dementia during Quarantine

Tips to help caregivers identify activities

It is important to help the person living with Alzheimer’s or another dementia remain engaged. Having an open discussion around any concerns and making slight adjustments to activities can make a difference. Consider the following tips:

Start by asking yourself these questions. What do they like to do? What are they able to do? And, what are they in the mood for today? Spending time with a loved one with Alzheimer’s and other dementia can remain meaningful and fun — especially if you take your cue from the person. 

Be prepared to adjust and modify activities. Activities may need to be adjusted or modified to adhere to stay-at-home orders. Play a game — checkers, cards or board games. Work on a jigsaw puzzle. Look at photo albums. 

Encourage involvement in daily life activities. Activities that help the individual feel like a valued part of the household — like setting the table — can provide a sense of success and accomplishment.

Focus on individual enjoyment. A former office worker might enjoy activities that involve organizing, like putting coins in a holder, helping to assemble a mailing or making a to-do list. A former farmer or gardener may take pleasure in working in the yard.

Ask for help. Ask family members and friends for help with some non-contact chores, like putting the trash out, getting the mail or mowing the lawn. Consider meal and grocery delivery services.

Tips to help caregivers modify or adjust activities

If you notice a person’s attention span waning or frustration level increasing, it’s likely time to end or modify the activity.

Help get the activity started. Most people with dementia still have the energy and desire to do things but may lack the ability to organize, plan, initiate and successfully complete the task. You may need to show the person how to perform the activity and provide simple, easy-to-follow steps. 

Concentrate on the process, not the result. Does it matter if the towels are folded properly? Not really. What matters is that you were able to spend time together, and that the person feels as if he or she has done something useful.

Be flexible. When the person insists that he or she doesn’t want to do something, it may be because he or she can’t do it or fears doing it. If the person insists on doing it a different way, let it happen, and change it later if necessary.

Assist with difficult parts of the task. If you’re cooking, and the person can’t measure the ingredients, finish the measuring and say, “Would you please stir this for me?”

Encourage self-expression. Include activities that allow the person a chance for expression. These types of activities could include painting, drawing, music or conversation.

Try again later. If something is not working, it may just be the wrong time of day or the activity may be too complicated. Try again later, or adapt the activity.

Tips for Supporting Alzheimer’s/Dementia Caregivers

Providing help and support to caregivers can be easier than most people think. Even little acts can make a big difference. The Alzheimer’s Association offers these suggestions:

Learn. Educate yourself about Alzheimer’s disease – its symptoms, its progression and the common challenges facing caregivers. The more you know, the easier it will be to find ways to help.

Build a Team. Organize family and friends who want to help with caregiving. The Alzheimer’s Association offers links to several free, online care calendar resources that families can use to build their care team, share takes and coordinate helpers.

Give Caregivers a Break. Make a standing appointment to give the caregiver a break. Spend time with the person with dementia and allow the caregiver a chance to run errands, go to their own doctor’s appointment, participate in a support group or engage in an activity that helps them recharge. Even one hour could make a big difference in providing the caregiver some relief.

Check In. Many Alzheimer’s and dementia caregivers report feeling isolated or alone. So start the conversation – a phone call to check in, sending a note, or stopping by for a visit can make a big difference in a caregiver’s day and help them feel supported.

Tackle the To-Do List. Ask for a list of errands that need to be run – such as picking up groceries or prescriptions. Offer to do yard work or other household chores. It can be hard for a caregiver to find time to complete these simple tasks that we often take for granted.

Be Specific and Be Flexible. Open-ended offers of support (“call me if you need anything” or “let me know if I can help”) may be well-intended, but are often dismissed. Be specific in your offer (“I’m going to the store, what do you need?”). Continue to let the caregiver know that you are there and ready to help.

Help for the Holidays. Holiday celebrations are often joyous occasions, but they can be challenging and stressful for families living with Alzheimer’s. Help caregivers around the holidays by offering to help with cooking, cleaning or gift shopping. If a caregiver has traditionally hosted family celebrations, offer your home instead.

Join the Fight. Honor a person living with the disease and their caregiver by joining the fight against Alzheimer’s. You can volunteer at your local Alzheimer’s Association chapter, participate in fundraising events such as the Walk to End Alzheimer’s and The Longest Day, advocate for more research funding, or sign up to participate in a clinical study through the Alzheimer’s Association’s Trial Match.

For more information, visit alz.org/help-support/caregiving/daily-care/activities. Also visit alz.org or call its 24/7 Helpline at 800.272.3900. 

The Journey…

Nov. 29, 2018 – little did I know that morning that this day would forever change my life and my family’s life. 

Many years before, my grandma – my mom’s mom – was diagnosed with Alzheimer’s Disease in her early 80s. I was a young wife and mother at the time, so I was very busy with our young new lives, but I was also very aware of the care and time my mom spent with her parents. Eventually, my grandma was moved to a nursing home (unfortunately this was before memory care facilities were available), and my grandpa was moved to an assisted-living facility across the street from her. We watched and loved my dear grandma as she became more and more confused. A clear memory I have of her is sitting in her wheelchair as she just giggled while you tried to talk to her. This is also when I noticed my mom becoming very worried and consumed with the idea of herself falling victim to this horrible disease.

Nov. 29, 2018 – the day this fear of hers was realized as we (my dad, myself, and my daughter, Betsy – also a nurse) sat in her neurologist’s examination room and heard him tell us that my mom definitely had the beginning of Alzheimer’s. This had been a long and difficult journey to get to this point, and although we were not completely surprised, it was breathtaking to hear the words.  Later that week, I would show my mom a picture from that day of my dad and I walking in the parking lot holding onto my granddaughter’s hand, and she just cried and said, “That is the day I got ‘the news’.”  This just broke my heart.

Looking back, we were able to see some of the beginning signs. I don’t know if we were trying to ignore them or were just too busy to stop and realize, but I now see them: my mom leaving doors and drawers open in her kitchen when we were there for family dinners, my mom writing notes around the house as reminders about words and names, the numerous items around her house that she seemed to be collecting or hoarding (toothbrushes, toilet paper, cleaning supplies, etc.), her becoming a little more anxious about upcoming dates and events, as well as numerous other little signs. Although there were many signs, she also did a very good job at staying the same great wife, mom and grandma she had always been. I cannot imagine how hard she was working to keep things all together.

After her initial diagnosis, her life and ours did not change a great deal. We were more aware of some of her difficulties, but overall, life continued to move forward. We also worked hard to try to keep “life” as “normal” as possible  for everyone. I remember that Christmas, still spending Christmas day and dinner at my parents’ home with our family there, but that year we took the ingredients out to her house and my daughter and I helped Mom with all of the cooking – something we have only had to assist with in the past.

I was NOT at all prepared for the changes that would occur in the next year! I am an only child, and I am fortunate that my husband and I live and work in Litchfield where my parents also live. The pain and stress this horrible disease places on a family is indescribable! One of the first BIG changes came when we made the extremely difficult decision to take my mom’s keys away from her. My mom was a very independent and “busy” woman who loved to be running around and doing things for her family and others. Taking her mode of independence away from her was devastating for all of us! It was also life-changing for myself and my dad. Something I regret as I look back was not reaching out to available resources and help. If you are going through this, please reach out and get the help that is available for you and your loved one!

Last year is pretty much a blur as we rode the ups and downs of this disease. I am a teacher, and thankfully my principal and superintendent were very understanding about my circumstance. I missed over 20 days of school last year because my mom and dad needed my assistance. Finally, on March 15, the day everything closed down in Illinois, out of desperation to keep my mom safe and healthy and my dad healthy as well, we made the difficult and heart-breaking decision to move my mom into a local memory care facility. Visiting through her window and watching her confusion and sometimes anger at what is going on is the hardest thing I have ever done in my life. I have never felt as heartbroken and helpless as I do watching the woman I love, cherish and treasure diminish before my eyes without being able to do anything for her. 

Important lessons I have learned through this experience:

  • We need much more support and education for Alzheimer’s patients and their families.
  • When I retire in 4 ½ years, I will definitely work with our local memory care facility to help support families of Alzheimer’s patients.
  • Cherish every minute you have with your loved ones. I cannot even begin to count the number of times I go to pick up my phone to call my mom about exciting moments, sad moments, or times I need to talk through something, and I can’t do that anymore. 
  • People can stand up and state they are cancer survivors – this is NOT possible with Alzheimer’s – there is no cure.
  • We need to be diligent about finding a cure for this awful disease.
  • Love and support those you know who have loved ones suffering from Alzheimer’s – deserting them in this time of need is NOT what they need. Yes, you may not know what to say or do, but trust me they just need you to be there for them.
  • Having said that, I would NOT have survived last year without the love and support of so many who HAVE stayed by our sides – my wonderful husband, two loving children, an understanding and supportive son-in-law, two adorable grandchildren, amazing friends who have been the rocks I needed, and aunts and cousins who have filled in as the sisters I don’t have. There are not enough THANKS or LOVE to send you.

Mom, I love you and miss you every day. What this awful disease is doing to you makes me so angry! Thank you for all you have been for me and my family – we love you! -Amy

“Peggy, promise me that you’ll enjoy your life.”

My Fellow Caregivers,

When I was asked to share my story, I readily agreed. Always-anything to support the cause. My mom has been in heaven close to 6 years, I am no longer in the role of active caregiver, so the emotional payout to me, in this already challenging year, would be nominal. Or so I thought. Though I have been writing ‘our story’ (Alzheimer’s. A window inside) for the past several years, I had put it aside-both because it was hard to go ‘back there’, and because I was rebuilding my life after our 10 year journey through Alzheimer’s. But, before starting this story here, I thought, let me read some of what has been shared by others in the past.

The very first line from the very first story I picked up, my heart and eyes filled with emotion. I was ‘back there’-not physically, but emotionally. You see, our stories are the same. We really are woven together in this purple tapestry called Alzheimer’s. You don’t know me & I don’t know you, but our stories interlock. I know what you’re going through, because your story is my story. And my story is your story. As Caregivers, our common thread is LOVE, shown & given through sacrifice. Repeat that to yourself please. Say it out loud. We sign on, not knowing for how long, often unprepared for all that lies ahead (even though we think we are prepared), but knowing in our heart it is the right thing to do. It is the only right thing to do. We also know-through Faith-that no step is taken alone. We will be given the strength we need for the journey, start to finish, however long. Philippians 4:13 I can do all things through Christ who strengthens me. This was my life verse, especially through Alzheimer’s, with everything personalized…I can do— (fill in the blank) because He will provide all that I need to do in what has been asked of me.

It is not my wish to go into the negatives of the disease. We all know those-we have or we are living it. The Alzheimer’s Association is your most valuable resource to assist with all of the stages. I don’t want to talk the Good, the Bad, the Ugly with regard to Dr.’s, Caregivers, stages and the like. No, I want to give you Hope. Though you may not know it now, you are in the midst of creating some of the most beautiful moments for you and your loved one. Defining moments. Moments that you’ll remember, moments that you’ll cherish, moments that will carry you. You have been positioned to help the one you love finish well, that is your sole focus. This season of life requires that you give it your all. When you think you can’t, you will. Believe me, you will. Alzheimer’s will bring out the best (and the worst) of who you are-all the while showcasing the true beauty and heart behind sacrificial love. God was with us. He walked in front, behind and alongside. He may show up in a moment that is personal only to you, but that moment will come when you need it most. He may show up through friends, or an encouraging word, a support group, or your own strengthened resolve. But He is there. In your next breath.

My mother was my best friend. I honestly felt that no one in this world would ever love me more. And when the time came for her to leave, how hard would that be? How could I go on without her and that love? A gift came to me during one of her lucid moments, it came smack dab in the middle of a very hard, trying hospital stay. She looked at me full on, with intention and asked me to promise her that I would enjoy my life. It made me cry then. It makes me cry now. But that is exactly what I am doing. I know I will see her again one day in heaven. I also know that she lives in me and through me. There is nothing I do that does not cycle back to her influence and love. My mother, like all those who are living with Alzheimer’s, was very courageous. They deserve our best. They did not ask for this diagnosis. We, the Caregivers, are courageous too. We are Warriors. But one day, the battle will be won. One day we will have our cure, and all of us, will have played a part in that victory.

Fellow Caregivers, stay the course.  THANK YOU for all that you do – hear this loud and clear-what  you do matters. Tuck that away in your heart for as often as you need to hear it. May God bless you and yours on your journey. We, all of us are praying for you and supporting you. 

Sincerely, Peggy Martino

On behalf of my mother, my best friend, my Boopa… June Martino 

There Is Help and There Is Hope

Candy has been a caregiver since her husband was diagnosed in 2008. She has had quite a difficult journey with Alzheimer’s as many people in her life have been diagnosed. Her grandma had it, her step grandparents and both her mother and father had the disease. When her husband was first diagnosed, she stepped into the caregiver role. Candy first noticed that he needed help with little things and then it progressively got worse. This is when she did research and found out about the Alzheimer’s Association. She discovered all the great resources they offered that really helped prepare her for what she was about to endure with her husband.

Caregivers have a very difficult job that only they can understand. There is really no one they can go to, to just vent. It is especially hard adjusting to the new lifestyle when you witness your spouse start to forget all the things they once loved. Candy’s husband loved to cook. As his condition worsened, he began to forget the little things like his recipes and how to use the stove. He needed her help. Her husband has always been a very proud man, so at first it was difficult for him to accept that he needed help. It was painful seeing her husband deteriorate every day.  This is when she turned to the Alzheimer’s Association for support.

The Alzheimer’s Association has helped her so much throughout her journey being a caregiver. The support groups and 24/7 helpline are lifesavers for caregivers. Candy became a support group facilitator in hopes of helping others that are going through the same thing as her. It gives her joy to know she can help someone. Being that she lives out in the middle of nowhere, some resources are limited. She regularly attends a weekly Wednesday Coffee & Conversation group to stay in touch with local friends for support. Several of her support group members also attend these meetings and they stay in touch more often than just their monthly scheduled meetings. Caregiving is a very difficult role to take on, especially if it is for a loved one. Candy emphasized the importance of just being there for everyone she can whether it be with this small group or just a quick phone call to know that someone is always there for you. They have even started Zoom meetings for caregiver support in the midst of COVID.

For Candy, being a facilitator has helped her to relieve a lot of stress. It is nice having someone to talk to who understands what you are going through. She wants others to understand that that you are not alone, and the weight is not all on you. You are going to screw up and it is okay. Sometimes it is very stressful being a caregiver and hard to watch someone you love become someone totally foreign to you. It is hard to watch them slip away every day. Do not be afraid to go to support groups, it is reassuring to be understood by people going through the same thing. There is help and there is hope!

To learn more about becoming a support group facilitator with the Alzheimer’s Association Illinois Chapter, click here.