**We use caregiver and care partner interchangeably**
The information provided is a starting point for some of the more common experiences you may encounter on your journey with early onset Alzheimer’s disease. The Gayle Wells Foundation for Early Onset Alzheimer’s & Care is here to help you along this journey. We can provide you with “What to Expect” tips and suggestions as you notice new symptoms being exhibited by your loved one. We can assist in finding local community and medical services within your area. We can provide additional ideas and suggestions for home safety guidelines, behavioral situations, personal care activities, and other concerns you encounter as your loved one progresses through this disease. Do not be afraid to ask—that is why we are here.
Being an advocate for your loved one will be one of the most important and loving gestures you can do for them. As the disease progresses, your loved one will not be able to speak up for themselves in times of crisis or when they know something isn’t right. You as their care partner know them better than anyone else. You are the one with them on a daily basis. You will come to know what triggers many of the behaviors. You will come to know what makes them calm and safe and you will know what agitates and scares them. YOU are the authority on your loved one.
There is no pre-determined path for how any one person will experience early onset Alzheimer’s disease. While we can explain the stages, common symptoms and behaviors, your journey and that of your loved one with the disease, will be uniquely yours. As a caregiver, you may get upset with yourself for not knowing how to handle certain situations or not being able to anticipate what will happen next. Please do not get upset with yourself. There will be really good days and there will be very difficult days.
Lessons from Gayle: Gayle would tell you that while the journey through Alzheimer’s is full of uncertainty, some things are certain throughout the disease. Never lose sight of the following:
- Your loved one is still here, despite the changes in memory and behaviors associated with the disease.
- Say “I love you” at least once a day
- Your loved one did not choose to get this disease
- What is gone is gone; focus on what remains. Your loved one is fighting hard to do the best they can with a disease they have no control over.
- Advocate for your loved one at all times
- A kiss is still a kiss
- A hug is still a hug
- You are stronger than you know
- Lean on others for support
- Be patient with your loved one and yourself
Additional Family Member – Caregiver Resources: