Dementia Daughter

How are you today? I’m fine. I find that I am saying “I am fine” more than ever now. Do people really want to know how I am really feeling? I think some of them do, but most just want to hear “I’m fine.” I’ve been caregiving for over 8 years now and juggling work, family, growing older and my own health challenges. It’s not pretty. I’m absent minded, moody, short tempered and overall, just meh.

My husband knows I am not really fine. He sees me crying or hears me on phone calls with doctors, hospice, caregivers and relatives who mean well but aren’t living this every day. He tries to support me in sweet ways and give me encouragement, but he knows he can’t change anything or help much. But he is there, and he is supportive. He wishes he could do more.

My real friends of course, know I am not really fine. They listen, they offer advice, they ask questions and talk me through the tough times. They share their own stories and support me on my long journey of caring for my parents. Some are not there yet, some have been through it, some are going through it right now, too. I lean on them and they lean on me.

Work friends ask how I am doing, and I try not to sound down or depressed, but I am. I don’t really want to work, and it is a mere distraction to reality of losing my father and now my mom to dementia. Thirteen years of Dad’s journey, losing him and now on year two with Mom. My career has taken a back seat. My heart is not in it. I work hard to do my best and sometimes I am stellar and sometimes I just can’t. Work friends mean well. They care. They just have a lot going on, too.

Family members are in denial. That is the part that really hurts. I don’t think they follow me or even know I have this blog, but if they do read this, know that it is hard to do this alone. They care, but they don’t know what to do or don’t want to do anything. Everyone is different and I probably shouldn’t be bitter about it, but I am. I’m not fine with it.

My dog doesn’t ask me how I’m doing, but he knows when I am fine and certainly when I am not fine! He just knows. I get an extra snuggle, a look, a wink, and or a paw on my arm to let me know he is there for me.

Me? I tell myself I am fine, but I know better. I am tired. I am sad. I am struggling. I am overwhelmed.

I know what I am supposed to do if I am not fine. Ask for help. Call a friend. Exercise. Eat right. Get a good night’s sleep. Start a hobby. Have a good cry. Read a book. Meditate. Do yoga. Scream into a pillow. Go to a support group. Eat ice cream. Play catch with the dog. Do what makes me happy.

Today I will try to be better than fine. I just came back from seeing Mom and she was so happy to see me. She told me I looked gorgeous. She asked me how the party was. (There was no party, but I told her it was fun, and we had a great time.) She looked beautiful since her aides had makeup on her and earrings on and even had her tooth in! She had a cute outfit on and was drinking her favorite, Diet Pepsi. She talked about babies and parties and happy times. She was in her own world and I think she is better than fine today so I will try to be better than fine, too.

If you are also on this journey with a loved one or on it yourself as the one with dementia, I support you from afar. I want you to be better than fine, but some days you may not be fine and that is okay. Feel it but know there will be days ahead that will be better. Give yourself space and time to rest, regroup and remember to take it one day at a time, one “I’m fine” at a time and EVERY single “better than fine” you can get.