Month: December 2019

By: Tracy Harding

Before I begin, I just want to say how honored I am to be able to share my story with all of you. The following is the mission speech I gave at this year’s Walk to End Alzheimer’s in McHenry County. I walked to honor both my mom and my aunt. 

My journey began 10 years ago when my mom started having memory loss. We had her tested but the doctors said it was due to stress. As the years went on, the memory loss got worse. She soon forgot how to do the simple things that we all take for granted in our daily lives. She forgot how to turn on a stove. She forgot how to use a cell phone. She even started to struggle with how to brush her own teeth. In 2014, we went back to the doctors, but this time she was diagnosed with Early-Onset Alzheimer’s. She was 58 years old. Three months later, at the age of 62, her sister, my aunt, was also diagnosed with Early-Onset Alzheimer’s. Our families were devastated and my mom’s spirit was broken beyond repair. We had to continue to take away her independence, one of the worst being when I had to call the police to ping her cell phone after she got lost driving. She never drove again after that. I soon realized that to have any type of relationship with my mom, I had to start learning how to live in her world. A world that wasn’t fair, a world that didn’t make sense, a world that she had no choice that she was living in.

She went through the stages incredibly quick and soon began to forget how to dress herself – and even worse, take care of her personal hygiene. It became too much, so in 2017 we decided to put her in a memory care home. The week before we moved her, I went to visit her on Mother’s Day when I wasn’t feeling well. She must have known somehow because she put her hand on my head and said, “Is it better now?” It will always be one of the fondest memories I have of my mom after she got ill. In my heart, I knew I still had a piece of her left. Moving her into the home was one of the hardest days of my life. Yes, she still had some spunk left in her step, but I saw what this disease was doing to other people and I knew that she would not be that far off from it.

Unfortunately, this disease has pretty much taken all of my mom from us. I remember doing a speech a couple of years ago at the high school I work at about Alzheimer’s. I stood there in front of everyone and said, “I am terrified for the day that she will no longer know my name.” I do not know the last time I have heard it. She doesn’t say much these days and if she does it is incoherent. She is dependent on someone for everything and is wheelchair-bound. She sits in a chair most of the day and sleeps. When she does her open eyes, there is not much behind them because the smallest of tasks exhaust her mind. I don’t like to admit to it, but I often find myself asking “when will this be over?” 

My mom turned 64 in September and I hate every time her birthday comes around because it is a reminder that this disease has stolen another year from us. I miss calling her on my way home from work. I miss her holding my hand when I would wake up from a surgery. I miss her beautiful voice when she would sing. I just miss my mom, yet she is still here. It is such an ironic feeling of grief that is so difficult to explain to those that have never experienced a loss with Alzheimer’s.

It is human nature to want to fix things. That is one of the toughest parts of being a caregiver or watching somebody live with Alzheimer’s because currently, we can’t. We all need to raise awareness about how this disease not only how impacts the people living with Alzheimer’s but also their families. We all need to raise the much-needed funds to find a cure to end Alzheimer’s. Simply put, we all need to fight. Like Jimmy V once said, “Don’t give up, don’t ever give up.” I know I will never give up. We WILL find the first survivor of Alzheimer’s one day! We must continue to forge ahead and be the voice for those that can no longer speak up for themselves. We must make the choice to wake up each day and fight again. We must remember that the “darkness part of midnight is right before the break of dawn” – and because of that, we must believe that we are on the brink of a cure!

I will never understand why my family was chosen for this path. But there is one thing I do know, because of this path I have some incredible people in my life. They are my strength. They are my light. They are the ones that remind me the sun will rise again and because of that and because of them, I will always be grateful to have joined this fight. 

Take a moment and look at the people around you, they see you, they hear you, they feel you but most importantly they understand you. Please know that you are never alone in this journey and if you ever do feel alone, remember today, and remember what it feels like today because today, today we are all one as we fight to find a cure to end Alzheimer’s! Keep love in your heart, keep fighting and keep believing.

Much love to all of you. Thank you. 

For families living with Alzheimer’s and other forms of dementia, the holidays can sometimes be less than happy and instead filled with anxiety and stress. When adult children travel to visit older parents there are often changes that have been occurring over the time apart. Things like short-term memory may be the first symptoms to appear however, judgment, speech, balance and even personality changes may also increase in between visits. If some family members live nearby and interact with mom and dad regularly the changes may not seem so significant as for family who isn’t around quite as often. The holidays also bring increased anxiety with larger crowds to serve at meal times, more planning and activities spent together, loud conversations and a desire to maintain harmony at any cost.

For a mom with Alzheimer’s who has always taken on meal planning and preparation, the holidays may simply prove to be too overwhelming. As the disease steals the ability to perform daily tasks, doing the grocery shopping, following a recipe or even setting the table may be too complicated with too many steps to remember and follow. For dads who traditionally host the viewing of the holiday football game, crowds of people all talking at once may cause anxiety and even anger as the ability to keep track of conversations decreases.

There are a number of things families can do if they are aware of changes before descending on mom and dad for the holidays. Sharing with friends who might stop by can also help eliminate stress and worry about whether a visit might go well.

Tips to enhance communication with a person who has dementia:

• Always approach the person from the front to say hello or hold a conversation.
• Use name badges for all guests so no one has to remember names and ask everyone to introduce themselves even if it seems silly. “Hi Grandpa, it’s Billy”
• Address the person with dementia by name or nickname. They may not always remember they are Dad, Uncle, or Aunt.
• Maintain eye contact.
• Be patient and encourage the person to continue to express themselves even if it’s hard to understand or it takes a long time.
• Avoid criticizing, correcting, and arguing. Be prepared to accept the reality of the person with dementia, whether that is today or 20 years ago on the farm. Who benefits by correcting the person with dementia? Why remind them someone has died if they don’t remember?
• Be calm and supportive.
• Avoid using negative statements and quizzing (e.g., “You know who that is, don’t you?”)
• Use short, simple, and familiar words but don’t speak to adult using childish, cutesy phrases.
• Avoid talking about the person as if he/she weren’t there.
• Try not to use phrases like “remember that?” for recent memories instead reminisce about general family memories. Do we always have pumpkin pie? Instead of “remember that Hanukah when we all went to the cabin?”
• Instead of television or games, pull out family albums and let the person with dementia share stories and memories.

Tips for success at mealtime:

• Suggest a grandchild help out in the kitchen as a way to practice following a recipe and measurement skills.
• Have everyone pick a job to do, even if this is a change for the family who always relied on mom to do everything in preparation for the big meal
• Try new recipes with foods that are easy to eat, more finger foods and less cutting up of meat.
• Use solid color plates so food can be more easily seen and not compete with flower patterns.
• Offer the role of carving to a new or younger family member as a way to pass the torch while keeping sharp knives out of the hands of someone with dementia.
• Offer sparkling water, non-alcoholic wine, and beer to all guests. Alcohol is not a good mix with dementia medications, depression, and mood swings.
• Help keep clothes clean and maintain dignity for the person with dementia by suggesting everyone tuck a napkin into their shirt or blouse.

Caregiving is a 24/7 job. The Alzheimer’s Association describes caregiving as the 36 hour day. The responsibility is non-stop. Caregivers are often managing the household budget, cleaning, cooking, doing laundry, taking care of the children if the person has Younger Onset Alzheimer’s, personal care and hygiene for the person with dementia as well as maintaining their sense of comfort, safety and security, and even sometimes, the caregiver is juggling care with a full-time job. It is exhausting and without a break and/or support, the caregiver will feel the effects physically as well as emotionally. When visitors come from out of town there are many ways they can assist the caregiver.

Tips for helping caregivers:

• Visitors from out of town can provide much-needed respite for the daily caregiver.
• Offer to sit and visit so the caregiver can grocery shop without a sense of vigilance.
• Give the gift of a night out with movie tickets or a sit-down dinner at a local restaurant.
• Offer to run errands to the store, the pharmacy, the hardware store
• Home repair and gardening may have become lesser priorities, offer to rake, clean up, or do simple repairs the caregiver is unable or doesn’t have the time for.
• Take the person with dementia out for coffee or to the hairdresser so the caregiver can get things done at home or simply sit and enjoy the quiet.
• Ask how the caregiver is doing not just the person with the disease.

If concerns arise after a visit with family over the holidays, start by talking with siblings. If it’s possible, try and get consensus about what everyone experienced to see if concerns are shared. If there are conflicting opinions, the Alzheimer’s Association can help sort things out. Additionally scheduling a visit with mom or dad’s family doctor to talk together about concerns might be helpful. There might be medication interactions or vitamin B deficiencies that are contributing to memory issues without signs of dementia so ruling out what might be causing concerns is the best first step. Suggesting a visit to the doctor’s office could actually put mom or dad’s own mind at ease as there are bound to be concerns they haven’t shared with family and friends.

While the holidays should be a time of celebration and being together with friends and family, a little planning ahead may help relieve stress and anxiety for everyone, especially for the person who is seeing things slowly change as the disease progresses. For more tips and support contact the Alzheimer’s Association Illinois Chapter at 800.272.3900 or go online to alz.org/illinois.