This post really hit home with me. It would be so helpful if others just came by for an hour, so I could get a bath or just fold a load of clothes, or talk on the phone in peace. Many days it is as if I have a hyper, angry, jealous two year old in a 6'2" body. If I talk on the phone he gets upset that I am not talking to him or he gets paranoid that I am talking about him. If I fold clothes, he wants to help, but this task is becoming more of a hindrance than a help. (I thank him and refold later.) If I take a shower, he is constantly opening the door to see who is in there, or he decides to cook. Last week I came out after a QUICK shower, and he had a glass bowl of water on the stove ready to turn it on to make oatmeal. (Thoughtful but scary.) If someone would call and instead of saying "Let me know what I can do," just drop off a bowl of cut watermelon, a plate of spaghetti, a small pot of soup - this would help take care of the caregiver. Or, if i can't do things with friends, "why don't you get a sitter?" is not a great solution. Finding the right person to stay with an LBD patient, is a mountainous task and VERY expensive. If others would visit for a bit (even just 30 minites) and let me read, write a thank you note, or just close my eyes and have a moment to shed a tear or two would be such a help. The constant reminders to take care of myself are becoming empty words, because I would love to do that, but it is not possible. This journey is not anything I ever could have imagined. It is constantly fluctuating, changing, unpredictable, and emotionally confusing.
Thank you for starting this post...I needed a place to write this - even if it is 6AM and he is getting up now - so back to caregiving!