Saying a final goodbye to a close family member or friend is something that has crossed everyone’s mind at one point or another. They dread how hard it will be to never have the same conversations or take that annual vacation to the beach once they’re gone. But what doesn’t cross many people’s minds is saying goodbye to that same person twice (or maybe even more times). I’m not talking about about a Groundhog Day situation, living the same day over and over again. I’m talking about dementia.
According to the Alzheimer’s Alliance, dementia is a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. One of the most common and well-known forms of dementia is Alzheimer’s. Dementia affects each individual differently, affecting language, concept of time and even long term memory. Damage on long-term memory can then result in forgetting important events in one’s life (i.e. getting married or having a child) or not remembering a friend or family member.
Those that have dementia struggle every day knowing their memory is fading and there is nothing they can do about it, but it is just as hard when you’re on the other side. The tables have now turned and someone you once depended on is depending on you. They were able to stay so strong and supportive throughout your life, but you feel as though your strength isn’t quite as comparable. How can you be strong and supportive for them when there isn’t any way to stop or change what is happening? This role reversal can apply to daily emotional support with words of affirmation or support in completing tasks such as what to wear for the day or making meals.
Fear takes over and every time you go to visit them the same thought crosses your mind, “Is today the day? Is it the first of many goodbyes?” Because when someone you love has dementia, sometimes you have to say goodbye to them more than once; once when they physically leave us, but also little goodbyes every time they don’t remember your face, every time you have to reintroduce yourself, or every time you tell them how you both know each other. “I’m Danielle, Robbie’s daughter… your granddaughter.” There will be those times where it’ll click, and they’ll be both happy you’re there but ashamed their memory failed to realize who was standing right in front of them. Sometimes those little goodbyes take their toll and going to visit can be too hard. You know there are only so many little goodbyes left until you reach the hardest goodbye.
The hardest goodbye… This is the time when no matter how hard you try to explain who you are, there is no going back. This is when no matter how much you visit them, call them by their nickname, or try to reminisce with them, you’re gone. You’re gone from their memory and you have to say goodbye. You say goodbye to the person you know and love so very much. You say goodbye to your old jokes and stories, and you say hello to the result of dementia. Now, you get to know the new person. They can get lost easily. They get lost physically because they can no longer remember the floor plan of their home of 30 plus years or they get lost mentally because they don’t remember the family trip you’re reminiscing about. They may start speaking their native language rather than English because they forgot no one in the room has spoken Lithuanian since they were in middle school and don’t understand. But you can start to form new memories and jokes (in hopes they’ll survive in their mind until your next visit), and you love the new person they’ve become just as much, if not more, than the old. Be strong for them like they were for you.
The fear of saying goodbye caused me to skip out on weekly visits to see my grandmother since I had a “first in, first out” mentality. I'm the youngest grand-child, so I figured if anyone in our family was forgotten first it’d be me. But I realized willingly removing myself from my grandmother’s life would just cause her to forget me faster. So if you have a loved one with dementia, just remember it’s a trying road and you will stumble sometimes.
Remember how strong you and your loved ones are.
Some people can’t even handle saying goodbye only once.
