Helping Those Who Care for Parkinson's Patients
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Mom is not doing as well on the Vyalev pump as I had hoped. I still feel like we are close to some kind of optimal setting, between the DBS and the pump and possibly meds. But I have no idea what it is. She does well over night, and well between 7am and around 9:15 am, but the caregiver can't even get there until 9am so mom stays in bed. Monday last week she got up on her own and fell off the toilet, so I had to go home to lift her up as the caregiver couldn't get her up. ... Anyway, between 9am and 4 or 5pm, she's hit and miss. She's also had the injection site infection and is on the fourth round of antibiotics for that. Her neuro has asked we switch out the cannula that connects to her skin every day now to avoid another infection. ... I've tried several different combinations of things, but I'm at work during the day so that makes things difficult. Sometimes if I turn the pump off for 10-20 minutes right when I get home at 3:30pm or 4, and then switch to the low rate, after an hour or two she can have 4-5 pretty good hours after that. But she's still needs help standing, toileting, etc., and doesn't go in the kitchen at all anymore (all things she could mostly do on her own with the pills). ... Her confusion and hallucinations are slightly worse. I messaged the doctor's office and the only guidance the nurse gave me was if we wanted to just go back to the pills. What? I asked for an appointment before winter because the doctor is 250 miles away over a mountain pass that snows heavily. She gave me a link to make my own appointment. They were all for 7:30 am, except for one at 3:30pm in January. I told her I couldn't do those appointments. She said she'd talk to scheduling, but I heard nothing back. ... I'm going to reach out to the Vyalev nurse today to see if she has any suggestions. She called me a couple of weeks ago and left a message, but I was at work (which she mentioned in the message and apologized for calling at that time). I called her back at 4pm and she didn't answer, and never called me back. ... I feel like I only occasionally have 30 minutes where I feel she is good enough that I can go to the store and get groceries and rush back. She sometimes gets in these cycles where she has to go to the bathroom every 10-15 minutes. I told her maybe we need to just bring the bedside commode into the living room, and she is adamantly against it. She struggles to pull her pants down to go to the bathroom because the pump on a belt around her waist, and she either pulls the belt down or just can't pull her pants down. I have to help with that over and over. (And if her poise pad or brief or pants are wet, we have to go through changing all of that, too.) Plus she calls the pump her "jumper" or "dumper" or "jump", and more often is talking about me in 3rd person (I think she thinks I'm dad, who passed almost 3 years ago, but now in the middle of talking to me I become some combination of dad and myself--I took the dog out last night and she said to the dog, "Go with Chad and Larry. I mean Chad." So she realized what she did, but it's getting sad and scary for me. ... I'm terrified to go back to the pills and I'm terrified to stay with the pump. |
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Things are a little better, I think. The primary doctor thought her injection site looked good on Monday, so stopped the antibiotics. The infection and/or antibiotics may have been making everything worse. She's improved since Thursday, and the infection site started draining on its own Friday (finally). She is generally doing better during the day, and now has periods where she can get up by herself, and get her pants on and off by herself for toileting. But much of the time she still needs some help. ... I'm getting a better reaction from turning the pump to high now, also. I just hope the infection doesn't come back, or start at another site. The doctor wants us rotating the injection site every day now. So far it seems to be working, but she just stopped the antibiotics on Monday, so I want to see how this works with no antibiotics. |
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| You have so much on your plate! Sending lots of supportive thoughts your way. |
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| Thanks. I get the feeling at work sometimes that people don't understand my situation at all, even when I tell them. |
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| Just venting. I called home around 1:50pm today to see how she was doing. The caregiver got on the phone and said the tube for the pump was not connected to her body--that it was like that when she arrived at 9am. But the caregiver's English is very broken, and she kept saying the "needle" was in the pouch for the pump. The tube goes from the pouch to the cannula on her stomach, but the caregiver kept saying it was in the pump. Mom was talking fine, so I thought that would be impossible if she was disconnected for 5 hours. Guess what? She WAS disconnected. I got home at 3:30pm, and her belt was on backwards and upside down. She had taken the bandage off her infected site and wrapped it around the cannula (which she apparently pulled out of her skin) and stuffed it in with the pump. So the caregiver was right...but it still made no sense. (I don't know if the caregiver put it back on her upside down and backwards, or if mom did--not that it mattered since it was disconnected from her anyway.) I don't know if mom did that and forgot, or just didn't want to "get in trouble" so denied it entirely. I got her moving enough to go to the bathroom, but her briefs were soiled with another mess. She has finally fallen asleep in her chair and seems relatively ok. I added a couple halves of sinemet hourly, and turned the pump up to high after I got it reconnected. |