*This post was originally written in May of 2014 but has been updated.
Alzheimer’s is a disease that not only destroys the life of the patient, but it also tries to rob them of the relationships in their lives on the way out. The patient’s personality changes so drastically that sometimes you can’t recognize someone you have loved your entire life, but this is just an illusion. The person you love is still there, but it is behind this awful disease that is making them do the things that they do. It is hard to remember this day after day.
I read “Alzheimer’s Dementia Caregiving–Learning to Deal With Difficult Behavior” multiple times because it seems to have a calming effect on me. It becomes my mantra. I know that my mom can’t help the way she is and I know that if it wasn’t for the disease she would be horrified herself by some of the things that she says. But she does have this terrible disease and I have to remember that right now it has the bigger voice.
I sometimes pretend that Alzheimer’s is one of those obnoxious relatives that always overstay their welcome and talks over everyone else. You know what I am talking every family has one of those relatives. The kind that shows up on every occasion to eat you out of house and home, destroys your house and stays way too long. This is Alzheimer’s in my mind. While my mother is whispering ”
While my mother is whispering “I am scared“. Alzheimer’s is yelling “I want to go home“.
While mom is terrified of the water in her shower. Alzheimer is laying around in stinky clothes and doesn’t care.
While mom would love to have her family together for a big cookout. Alzheimer wants to pout in the corner and say harsh things to people that it is supposed to love
I have to think like this if not I would be heartbroken most of the time.
People who are not living with a person who has Alzheimer’s Disease just can’t understand the ups and downs all in a days time. Some moments I feel like “Yes! I’ve got this everything is going to be okay”. Ten minutes later when she tells me she is thinking about moving back home. I get that tightening in my stomach and that feeling of hopelessness.
It is a constant roller coaster and by the end of the day, I am so exhausted from all the emotional changes throughout the day I just can’t wait to close my eyes and rest. But even that is impossible. Your mind immediately starts thinking of ways to avoid the ups and downs for the next day, even though you know that this is not possible. You just have to try to keep a positive outlook even though sometimes that is easier said than done. You have to ALWAYS lead with love.