I installed cameras throughout the first floor of my house so I could watch over my mother. Some people thought I was crazy. Hell, I thought I was crazy.
She’s getting frailer, seemingly by the day – sometimes by the hour. There are days when I think, “she is great, just like before!” And days like today, where I clearly know that she is not like before, and she’s not great.
It was three years ago when she shared with me that her next door neighbor was sneaking into her basement and stealing her hot water. “He” then escalated to stealing the quarters out of her Easter Lenten folder and the batteries from her smoke detectors. “He” started to bring a friend with him and “they” began to sit on the steps that led to the basement waiting for her to fall asleep. Mom started to sleep sitting up in the living room on the couch to catch “them”. It was about that time that I told her to pack her suitcase and I was taking her to come live with me. Some people thought she was crazy. Hell, I thought she was crazy.
Several doctors and psychiatrists later, mom was diagnosed with early onset dementia and paranoia. It took about a year and the help of a little pill called Risperidone, to quiet the voices which had moved from her basement to mine in the form of a new “him” — my next door neighbor.
It was 7 months ago at a routine doctors’ visit when my mom’s red blood cell count prompted a red flag for additional testing. Two specialists and four CAT Scans later, mom was diagnosed with stage 3 lung cancer in both of her lungs. She’d never smoked a cigarette in her adult life and was quite possibly the nicest, kindest person I have ever known. Lung Cancer for MY mom, now that’s just crazy.
It was just 2 hours ago as I was working in my home office that I decided to take a peek at my newly installed “mom-cams”. I saw her sitting on the floor beside her bed. Not moving, just sitting on the floor. Her nightgown was off and there was a pillow beside her. It took me a moment to really understand what I was seeing. I just sat there staring at the screen thinking it must be frozen and she’s really standing up now. What’s strange is that when you get yourself ready day in and day out to see something bad on these cameras, when you finally do, your brain doesn’t want to register it. It took less than 3 seconds to take the stairs three at a time and fly into her room to help but it seemed like forever. She was not hurt at all, but she couldn’t get up. She had taken her nightgown off so that it wouldn’t gather around her ankles as she was trying to stand. I tried to pick her up but she was too heavy for me to lift from that position. I scooted her around the room on the pillow to try and find a spot that she might be able to leverage her weight to pull herself up. If it hadn’t been my mom it was happening to it would definitely have been a funny sight to see. All 130 lbs of me trying to get a grown woman off the floor and not having the faintest idea how to make that happen. It took about 40 minutes, several breaks, a step stool, a real stool and many prayers, but finally we got her up. I wanted to cry after it was over but that would have been crazy.
The truth is, from the dementia to the paranoia to the cancer, I really have no idea what I am doing. I am trying and I am learning but I feel like I am always about three steps behind getting it right. After two days of her blood pressure being super low, I realized that she was probably getting confused with which day was which and over taking meds from her 7 Day pill box. I knew she was struggling with remembering the days of the week and I had seen pills missing on the wrong day but I didn’t put two and two together until the blood pressure readings. So now I keep the pill box and I hand her medicine throughout the day. I feel like I should have realized it sooner and made the change quicker.
I knew my mother was getting weaker. Many times I have to grab the back of her jacket when we are walking so she doesn’t fall. I see her teeter when getting up from her chair and the past three weeks she can’t get into bed without my help. I had mentioned it to some nurses and they said she should get physical therapy. I said yes, great idea but nothing happened and I never followed up. Finally three weeks ago at a doctor’s appointment, he asked me about her stability and I said she needs help. His office followed through and we finally got approved for 2 day a week in home physical therapy. Ironically today was the first day that the new physical therapist showed up — an hour AFTER I struggled to pick my mom up off the floor. To say I could have used that help a little sooner, is let’s just say a crazy understatement.
I have no idea what I’m doing. I’ve never done any of this before and I wonder why no one has come up with an app yet to take care of your elderly parents. I worry every day. Even the days when it seems like everything is fine, I am worried. I am worried that I am not doing enough, not doing it right, not doing it fast enough or well enough. Worried that I don’t know what the hell I am doing and I am figuring it out on the fly, and she deserves better than that. Worried that I’m going crazy.
At the same time, I do realize I am being too hard on myself and that as everyone reminds me I am a good daughter that is doing a great job taking care of her mother. I know that is what it IS, but it’s not what it feels like to me. We all have our emotional baggage and I suppose for me, I am still holding on to a 50 lb. carry-on packed tightly with guilt about my father. The “would haves” and “should haves” I still battle with about his passing away in a nursing home two years ago.
I haven’t written in this blog since May when I graduated, I said then that I was done with it – that I didn’t need it anymore. Today, I felt like I had to tell this story out loud. Today it doesn’t matter if anyone ever reads this or knows about it. Today, the fact is this story lept from my heart to this piece of paper and it was just enough to make me feel a little less crazy. Today, I needed that.