Today is a tough day.
It’s hard not to get down and depressed.
I always blame it on my hormones but I have reason to be depressed, sad and angry. I know everybody has problems and I don’t want to diminish them… but I wonder… does everyone who has a loved one with Alzheimer’s feel this way? Does everybody stop living their lives to live the life of a caregiver?
How in the world do parents who have disabled kids manage? It’s forever and it’s so sad. I could totally burn out and put Rick into a memory care facility, but I can’t because I love him. When you have a disabled kid, I can only imagine how much more mentally debilitating it can be for everyone. One of the parents wouldn’t be able to work right? And they would need their other kids to help and also hire a babysitter 24/7. I really don’t know how they do it but I am fed up today with my kid. I have a caregiver but is not enough. I’m angry and exhausted. That this is my life now.
I had so many plans for our future together. I loved and I still love this man more than my own life. We had many happy years and many happy times and memories and I should be grateful for the 35 years that we had, but I’m not. I’m so mad. I am fed up. I don’t want to play this game anymore.
I wake up every day wondering how I am going to get through this. I can’t stand the thought of Rick getting worse and becoming non-talkative and incontinent and all those things. I know that his condition is getting worse. I don’t want to see. My sisters try to open my eyes. Faby tries to open my eyes. But I don’t want to see. I want to be blind and do I have that right? It is my life!!! I still have hope for a cure. If I don’t have hope, what do I have…pity? Rick doesn’t deserve pity from me or anyone. If he could see himself now, he would have killed himself. He was strong and independent and sure of himself and confident, a completely different man not a walking dead.
Faby says that I need him more than he needs me. Maybe she’s right. People always look at me and feel bad for me or feel sorry for me and I hate that I’m putting that on people. Sometimes they say “I don’t know how you do it”. I don’t either. I have no choice. I can’t give up. I don’t know why I just can’t. I think that giving up would be letting him down or accepting this evil disease. I want them to come up with a cure using that gene editing thing Crispr to fix his Alzheimer’s and put him back to the way I knew him. I want it and I want it now! I’m so angry at his family too. I know that it isn’t their fault that they have these horrible genetics but I blame his grandmother, his mother and I believe his great-grandmother too. I blame them all for not doing something to save the love of my life. I am mad because they don’t help me but as my sister always reminds me, we were absent Uncle and Aunt all these years with his family as well. So we are partly to blame. I just feel like my family helps me so much and Rick’s doesn’t at all. I wonder what will happen next year, next month, next day. It is always a surprise and not a good one.
Won’t something good ever come again? Am I destined to put him in a memory care facility like they did with his mother? Even though they try to make the place lively and happy it isn’t. It’s hard for me to be there. It’s sad. I can pretend I am ok but I always leave that fk* place crying. It is too sad to imagine him living there forever.
Alzheimer’s robs you of your brain – dignity- humanity- your soul. I wish there was a way to fight this. I read yesterday that every 65 seconds someone in the U.S. is diagnosed with Alzheimer’s. I feel like they aren’t trying hard enough or fighting this hard enough. It’s like everyone just accepts it. I want to enjoy life again but it’s really difficult. I find that other people have such mundane problems compared to mine. I know that sounds selfish but it’s just hard to hear that you are upset for example because your People magazine didn’t arrive when you are dealing with AD.