It has been 19 days since mom was released from the physical therapy rehabilitation nursing home. What was initially her conscious, annoying preference to have assistance with everything and be super clingy and chatty, brought on by the attentiveness of the nursing home staff has developed into a genuine helplessness. Mom's dementia is the worst I have ever seen it. At first she just refused to exercise because she didn't want to listen to me. Now, she's so weak that her arms and legs tremble after five minutes (or less) of activity.
Here's the problem: she won't sleep. I'm not sure what is happening in her dementia-wracked mind, but it must be nightmarish. She will only close her eyes for a few minutes before opening them again and sitting up. I tried giving her the Norco that she was prescribed, but she still won't sleep. The drowsiness just makes her weaker and more confused. It seems to also make the unpleasant stuff in her mind worse. Without the sedating meds, she needs help finding and using the bathroom when she gets up at night. During the day she usually knows where she is going although she often needs help getting there. When sedated, she can barely get out of bed, but she still tries it. She doesn't know why she is getting up. Sometimes she has to go to the bathroom, but she has to be both convinced and assisted. She's so unsteady on her feet that I've had some close calls avoiding injuring myself to keep her from falling. I can't sleep at night because she needs to be monitored so closely. I am also becoming a safety concern as my sleep deprivation builds up.
I sat with her at dialysis for the whole three and a half hours yesterday. She has a cold with a nasty cough (which is definitely not helping the insomnia). Since her dementia is so bad and she's so exhausted already, combining those with the energy drain of dialysis treatment makes her a loopy, frail mess. She often blows her nose into her hand, spraying and dribbling mucus everywhere and spits wherever: ground, floor, garbage, any cup within reach and often onto her own clothing or bed linens. I had to assist with the nose-blowing and spitting, distribute snacks, keep a germ mask on her as much as possible and clean everything up. That's, of course, in addition to keeping her relatively calm through her episodes.
After dialysis, she was in a state of inconsolable misery. Physically, it was much worse than sedating her. Most of my safety close calls occurred during that time. Around 7pm, her groaning and whining escalated to loud wailing and calling for Jesus's mercy. When I asked her what was wrong, she couldn't tell me. She just kept repeating herself. When I asked if she was in pain, she said yes. I asked her if the pain was bad enough to go to the emergency room, and she said that it was. She NEVER wants to go to the ER! I usually have to either threaten her or trick her to get her into the car for a hospital visit of any kind. Although we can't afford another ER visit (so far we're at three visits since rehab with a $75 copay each, and, without me earning a single dollar for the past two weeks, we are literally on the verge of losing everything from transportation to housing), I knew we had to go. A few miles into the drive, Controlla by Drake came in the radio. Her groaning ceased, and she sat quietly for the rest of the trip. After taking the hospital exit off the freeway, I asked her how she felt. She said she was fine. I asked her if she was still in pain, and she said no. I asked her if she still wanted to go to emergency, and she said that she didn't care. Since we were already there, I told her that I would at least pick up her prescription refills. Well, I couldn't afford them. I had $11 in my bank account, $7 on her credit card (I had to order a new card for mine because of a weird charge last week, so I don't have one at the moment - even if I did, I only have $50 available credit left). She needed her blood sugar pills for today. Luckily, the co-pay for that med was $10. I would've given them a roll of quarters from my trunk for those pills if I had to. One of her prescriptions is over a hundred dollars! How on earth am I supposed to pay for that?
So, anyway, here we are. I have about $50 in change that I can coinstar for food. I have to make the fuel in the car last as long as I can. I'm still riding around on a spare because I can't afford another new tire. A friend loaned me money for that, but my bank hasn't posted the PayPal transfer, which I initiated on Thursday. I can't drive for Lyft in my car until I get my scheduled maintenance and safety inspection ($800+). I suppose I could deliver DoorDash or Instacart in a pinch if it was safe to leave mom home alone for a while, but it simply is not. I want to use the money, whenever the hell they decide to post it, to rent a car with the Hertz-Lyft partnership program, but I will need to be out of the house for long hours. That's really the only way I can see to earn enough money to start making a dent in the massive debt we're accruing and have an acceptable quality of life.
The government program (Medi-Cal is the gateway to all the senior care and support services) won't help us because her retirement income is a couple hundred a month higher than what they consider low income. My lack of income while I am primary caregiver doesn't even come into play, which is such bullshit. I can't even get her a damn wheelchair!
My February car loan payment is overdue because of the double blowout. I was driving for Lyft on the last few days of my last valid safety inspection in an effort to make enough money to pay for that and a rental, but I instead ended up spending more than I made. I had to buy a new tire so I could go pick mom up from dialysis (almost three hours late). The second flat is still in the trunk. I know that I'm not supposed to ride a spare so long, but... no fucking choice. I have nine days until my March car payment is due, and I haven't yet paid February, and I have no income. My car insurance is due tomorrow. I will pay it late from mom's SSI when it posts Wednesday. I don't know what I'll do about the car loan payment yet. I will also need to pay my cell phone.
Last night, after a brief, wonderful few hours of lucidity (which I used to get some much needed rest), mom went back to the crazed insomnia and coughing. She had a bathroom accident just before 6am. She almost got there in time. If she hadn't been so confused and combative, we could've made it. However, there we were, both exhausted and irritable. She could barely stand while I cleaned her up, but we somehow got through it. An hour prior, I helped her go pee. An hour later, I had to calm her down and assure her that she didn't have to get up because it wasn't a dialysis day, and she wanted to discuss the music I was playing for her (yes, I've had the Bluetooth speaker on in her room ever since the Drake incident, but she seems to prefer Billie Holiday and others from that era over newer tunes). An hour after that, she wanted breakfast. It's noon now. Neither of us has slept since the bathroom accident. Her coughing has gotten much better. I gave her Mucinex Friday night despite my reservations about drug interactions because she just couldn't breathe and she was suffering so bad that I was desperate. A trip to the ER the night before was fruitless. They wouldn't help her at all. They just ran a bunch of tests and told her to drink more water. The Mucinex worked pretty well. I sat with her for a few hours and urged her to close her eyes every time she opened them. She slept for a while that night. I tried repeating the same process again after dialysis yesterday, but it didn't work. I don't think she needs any more medicine IF SHE WOULD JUST GET SOME SLEEP. I'm tightrope walking on my last little tender nerve. I keep explaining to her that she needs to go to sleep because the body and mind need sleep to heal and function correctly, and she does this crazy, delirious debating that doesn't even make any damn sense. Grrr. Go to sleep!
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