While Dad Was Out

Last week, my dad flew out to his home state of Connecticut, with his 4 sisters, to attend their cousin's wedding and have a little family reunion. He was gone for 8 days and 7 nights. It was a very much needed break for him and I'm really glad he got to go. I know he worries leaving mom behind, but he knows that he can count on us to help him out.

I've watched mom plenty of times in the past when dad has gone out of town. We have the usual routine of caregivers during the day and between my sister, her husband, my husband and myself, we rotate turns spending the night. I'm finding it a bit more difficult as her disease progresses. She is to the point now where she needs some help getting into the shower, so that was one of our jobs while dad was out-making sure she showers. It's not an easy thing to have to disrobe your parent and force them into a shower. The first time I had to do that, I really felt like I was violating her in some way. The first time is the hardest. After that, you learn what is necessary to do and you just learn to it. It's probably more difficult emotionally than anything else.

It's hard to put into words all the emotions that I felt during this week of caring for mom, but I was glad that I was able to come over and help my mom (and dad). While it's been difficult to have to take on a parent role with my mom, there were some tender moments as well. One night, mom was laying in her bed and I went to lay down beside her, just to keep her company (and maybe for my own comfort as well). She was mumbling that her face hurt. She hasn't been washing it well and I discovered that she is using her body wash as a facial moisturizer; needless to say her skin is dry and peeling. I knew she would fight me, but I decided to try and wipe her face with a cleansing cloth. At first, she protested and pulled her sheet over her head and began laughing hysterically, which made me start laughing as well. Eventually, she let me finish wiping her face as the dead skin wiped off in the cloth. I brought over her face moisturizer and began rubbing it into circles on her face. She initially started swatting my hand away, but she finally calmed down. She laid her head back and closed her eyes as I rubbed the moisturizer into her thirsty skin. For a quick minute, I thought she might have even enjoyed the nurturing.

There were definitely ups and downs of the week. I felt a huge weight of responsibility on my shoulders while my dad was gone. Even though I had help from other people, ultimately I felt the most responsibility for her. I was in charge of coordinating the caregiving schedule so I had to worry if people would show up or not and fill in when people cancelled at the last minute (which I usually do every week anyway, but not 24/7). It's no different than being a parent; your children are on the forefront of your mind constantly, and that's how it was with my mom. But with the responsibility of caring for someone also comes a growing love for that person. My heart swells with love for my mom. It is so hard to balance my family and kids and all of my other life responsibilities and I'm not perfect. By Thursday night, I admit I did have a little bit of a meltdown and was feeling discouraged. But I think that comes with the territory of caregiving. Caregiving is hard and it takes a lot out of you, and there are times that you have those meltdowns, but it doesn't change your love for the person. It made me realize and appreciate more of the weight that my dad carries around with him every day. I am really glad that he was able to have such a fun week with his family; it is well deserved.

I feel impressed to say one more thing; someone made a comment to me that I want to address. It was insinuated that I write about things to put it out there and show off to everyone what I do for my mom. That insinuation really hurt my feelings. It's often difficult to write the things that I do and I hesitate sometimes to do it. And I've always had the personality that worries what people will think (though I'm learning, with age and experience, to get over that). I write for a few different reasons: to educate about the disease, to help others in their journey and because writing is therapeutic for me. People leave me very kind comments which I appreciate, but it sometimes makes me uncomfortable because I really don't feel like there's anything extra special about what I'm doing. I think it is what anyone would do. I do not write to seek praise or to get a pat on the back, simply to share our journey with others.