One of the hardest things about dealing with this disease is coming to terms with the role reversal which it brings. As my mom's abilities become less and less, we have to step in to do more and more for her. With every forced clothing change or face and hand wash after lunch or assistance in the bathroom, I feel like I am ripping her dignity away from her; especially when she tells me,
"I'm your mom, you should support me."
Deep down I know that I am doing the right thing and taking care of her the best that I can. Still, I feel as if I am disrespecting- and in some instances violating-my mom. I can only imagine how my dad must feel.
Today was probably the toughest in this aspect that I've faced in a while. It wasn't just one thing that I had to play mom for today. It was several. It started when I first arrived to her house. Dad had warned me that mom's make-up has gotten dramatically worse over the past few days. I didn't think that was possible but sure enough, mom had globs of make up on her face when I walked in her room. I can assume that she poured a bottle of foundation in her hands and then smeared it all on her face, without rubbing any of it in. It was wet and runny and gloppy. I got some toilet paper and wiped her face in sections, with her swatting my hand away in between each section. I had to wait until she was distracted with brushing her hair to quickly rub some more of the residue off her face.
Mom's been so antsy lately to get out of the house. Unfortunately, she doesn't get out often because she is difficult for a lot of her caregivers to manage. I don't mind taking her out; I usually feel like I can handle it (although it's getting harder and harder when I have my 4 year old sidekick in tow). I knew mom wanted to go to her sister's, so I told her that I would take her. She really wanted to get exercise and I kept repeating to her that she could walk up to the top of the street and then get in my car. The instant that front door was unlocked, mom plowed through the door and sprinted up the street. I quickly got my son and myself in the car and followed after her (thankfully she used the sidewalk this time). By the time she got to the top of the street, her sprint had turned into a shuffle and she was panting quite hard. I urged her to get in the car and she did.
When she was ready to leave her sister's house, she was insistent again on walking. My Aunt lives on a busy street and I am not comfortable with mom walking to the end of the street alone as she tends to walk in the middle of the street now. My Uncle helped me block the door so that I could get a good hold on her arm before she darted out the door. I practically had to drag my mom to the door (she was trying to drag me to the street) and my Uncle and I finally got her in the front seat, buckling her seat and closing the door. But mom is mischevious. As soon as I began walking around the car to get to my side of the car, she unbuckled her seat and darted out the door. My Uncle caught her and I decided it would be safer to put her in the back seat with the child lock on. I tried to get her seatbelt on, but she kept taking it off. Unfortunately, we drove the mile home without her seatbelt fastened, but the child locks prevented her from getting out (she reminded me, also, to lock the windows!!) I forgot to mention that in the process of getting her into the car, she spilled her opened can of root beer (which she keeps in her purse) ALL over my car. Ugh.
Once we were at home and mom went back to her room, I tried to get her to change her pants. She had root beer and jelly all over pants but of course didn't understand the need to change clothes. I knew she'd make a big mess everywhere she went, and especially on her bed, with her pants in that condition so I tried to take control of the situation and change her pants. That meant pulling down her pants and physically fighting her to get them off. This is where I feel as if I'm violating my mom. Sometimes I just don't know if I'm doing the right thing when I have to be forceful with her, especially when it violates her privacy. As I was trying to change her, I made a strange discovery. Mom had on no underwear beneath her pants. I'm not sure how she missed that step in getting dressed, but poor mom forgot to put them on (I have no idea if this is a first or not). Furthermore, I discovered that both her undershirt and her bra were on backwards. I have to admit I chuckled a little bit at that one; sometimes I don't know whether to laugh or cry so to keep my sanity I try to find the humor. After being pushed and kicked at, I lost the battle with changing mom's clothes. She's a lot bigger than me nowadays and while I am pretty good at restraining her from running into the street, I am no match against her at clothes changing time. Thankfully, my dad came home around noon in between appointments and was able to change her. It really amazes me how he is able to just get in and get the job done.
I'm not sharing any of this to embarrass my dear mom; it's not really her I'm writing about. It is the disease. Still, I debated if I should post about this or not (particularly the underwear issue); there are a lot of things that I opt not to write about because it feels too personal. I do feel a little bit of guilt for exposing some other personal situations. But I want people to understand the real challenges of this disease. Dementia isn't only losing memories; it's losing all abilities. It's so much worse than portrayed in movies like "The Notebook". It's an ugly, horrible disease that rips away all dignity.
I have readers who have written to me and shared that my blog has helped them to know what to expect from their loved one who is stage(s) behind my mom; I write this for them as well. It's not easy to see what lies ahead, but knowledge is power and preparations (mentally and physically) help a lot in the management of disease.
And I suppose I also needed to share some of my thoughts for my own therapy. I try to be optimistic and find humor when I can. Overall I'd like to think I'm pretty good at keeping positive and being strong. But today left me feeling really down for some reason and I felt like I needed to write to get some of these feelings off my chest. There are days when I feel like I'm not ready to lose my mom (physically) quite yet, and other days where I wish that she could leave this earth before the rest of her dignity is completely gone. I hate what this disease has done to her. Dementia is a beast.