I have learned many lessons as Menorah Manor’s Director of the Bresler Alzheimer’s Disease & Related Disorders Program. Being a caregiver can be difficult. These are lessons I have learned and things that all caregivers should know:
1. Caring for someone with dementia is best described as a roller coaster ride. It comes with highs and lows. Some days you will visit and your loved one will be able to have a conversation with you, but during your next visit they may not know who you are. At times you will wish that the ride was over and other times you will find yourself hanging on, hoping it will never end.
2. Trust your gut. You know your loved one better than anyone. Trust this. You need to be an advocate for them.
3. Don’t be embarrassed to ask for support or help. The statistics are high for the person with dementia outliving the caregiver. As flight attendants tell us, “Put your oxygen mask on first.”
4. Even after you admit your family member to a nursing center, you are still a caregiver. We want you to be a partner with us in this journey.
5. Knowledge is power, but sometimes “googling” is not such a good idea.
6. You decide what is best for you—not your children, not your friends, and not your spouse. Everyone handles the role of caregiver and the journey in their own way. You decide when you visit after the admission, how often you visit, and the decisions you make on your loved one’s behalf.
7. When interpreting your family member’s advance directives, you are “their voice” following their wishes. Your loved one took a lot of time and thought deciding what they want to happen at the end of their life. Your role is to advocate their wishes, not yours.
8. We want to know what you have to say! It is helpful when we obtain family input. Your observations help us to improve. We understand that this journey is an emotionally charged one and that you will not always be able to communicate your words in a calm manner. We have big shoulders and we will understand.
Being a caregiver for someone with dementia is not a ride that anyone chooses to go on. Luckily, you don’t have to ride alone. We are here for you.
Gwen Kaldenberg, MA, MSW,CDP, CADDCT
Director of the Bresler Alzheimer’s Disease and Related Disorders Program