Helping Those Who Care for Parkinson's Patients
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Long story short, we've had a new caregiver for 6 hours a day for the last couple months. Her English isn't great, and mom's hearing isn't great, so they don't communicate very well. ... For years we've used the disposable bed mats with three towels folded in half on top of that (giving six layers of towel), in addition to the generic Fred Meyer briefs mom wears (she won't wear anything else). In June the new caregiver didn't like that. She told me to get washable bed mats. Fine, I got washable bed mats, and her briefs were soaked up to the waistline (the mats didn't soak up the pee fast enough). I had to start putting her pump in a tupperware bowl instead of on the belt around her waist just to keep it dry. Which was fine at the time--I was home from school over the summer and the pump was new, etc. The caregiver told me to get a different kind of pad, so I did. Same result, and the caregiver sometimes doesn't even know what side is supposed to face up (I have to fix it half the time--it has a tag on the wrong side that said "this side down". The "up" side is green and down side is blue--so how she can forget, I don't know.) ... Now that school has started, she needs to wear the pump on the belt over night because the caregivers are not allowed to mess with the pump at all. (And mom is pretty much inert in the morning so I can't get the belt and pump on her before I leave.) I tried putting plastic wrap around the belt, but the pee seeps through, and around the belt, and the caregivers don't even take the plastic off anyway so mom smells like pee all day. ... So I went back to putting the towels down, which has worked. The pee stays way below her waist and the belt and pump are dry. Now the caregiver is telling mom every day to tell me not to put towels down because of bacteria. (We did this for years with no problem using hot water, detergent with oxi, and an extra rinse cycle in the washing machine. The disposable bed pad under the towels got the rest.) ... And the caregiver turns my internet cameras around as soon as she gets here, except for the one angled on mom's chair because she'd have to crawl behind the chair to do it. She says she doesn't want to be on camera. And Friday I think she gave her an extra antibiotic from the bottle (something they've told me a million times they cannot do), possibly because mom just asked for it (she's confused most of the time--why she would do it just because mom asked is bizarre to me). I checked the bottle and one pill was missing. There is a small possibility--I'm thinking 1%--that I made some mistake or the pharmacy did. I can't get a straight answer out of mom, but she blurted out that she took an antibiotic that day as soon as I got home. (Later she couldn't remember.) ... Last week when school started the caregiver was gone for four days because her car was in the shop (they sent substitutes). ... With the pump, mom started wanting to get up at 8am instead of 9am. So I changed the caregiver hours to 8 to 2. The caregiver said fine, and showed up at 8:30 the first day, 8:45 the second day, and asked if it could be 8:30 because she has to take her niece to daycare. Fine. Then she shows up 8:45 and says she can't be here until 9. Ugh. ... I hate to ask for someone new yet again for fear they will be even worse, but I'm getting to the end of my rope. Mom has certain routines she's had for 15 years, and this caregiver is trying to change everything. Mom can't remember well enough to change, and doesn't need to. |
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Last week when mom's pump was broken, I called the caregiver company to let them know to tell mom's caregiver that the 9am pills would have to be given at 9am (since the pump was broken, and we had to go back to the Parkinson's pills). I checked the cameras at 9:04, and she looked in on mom before turning the hallway camera around, but didn't give her the pills. So I called and told her mom needed her pills, the pump broke, etc. She said ok. But the camera on mom's living room chair showed she didn't give them until 9:40 (the only camera she doesn't turn around is that one). ... I emailed her supervisor, but she was out for a few days. The caregiver was 45 minutes late to our house on Tuesday. She was on time on Wednesday, but didn't give her the pills until 9:45am. Thursday the supervisor finally got back to me and we switched to a new person yesterday. I just really had enough. |
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| I can't imagine the frustration! When my husband was in the hospital the last time for a procedure unrelated to PD they were horrible about giving his meds let alone on time. If I hadn't been there pitching a fit I'm not sure he would have received meds at all. If I was paying for in home care I would expect someone who could communicate well, be on time, and professional in every way. I'm so sorry you are dealing with this. Hugs. |
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In 2018 mom fell and got a compression fracture in her back, and they wouldn't allow me to give her Parkinson's meds because all the meds had to be from the hospital. It took hours and hours before she got any. I have no idea how that works if people need meds to stay alive, lol. I'm assuming they make an exception. ... And when she had her DBS surgery, her med schedule was really weird--half of the 25/250 sinemet every 65 minutes, and she was on oxycodone for pain that was the 5/325. That script was for 4 a day, but the most I would ever give her was 3 and 1/2 a day--and only 1/2 at a time--because she would get confused if I gave her a whole pill at once, or the full 4 pills a day. But since the doctor had prescribed them, they gave her one whole pill 4 times a day during her whole hospital stay. She was really confused and out of it by the time I took her home. I remember her local neurologist asking me how long it took her to come "back to the land of the living". I told him she finally stapped out of it at bedtime around 10pm, and I gave her zero oxycodone the rest of that day. Shortly after that I weaned her down to zero, and there was no difference in her pain (actually, after DBS, and stopping the oxy, she said her pain was a 3 or 4, the lowest numbers she ever gave). The pain clinic said the pills didn't seem to be helping so we didn't need to come back. DUH! I was baffled as to why they hadn't ever suggested we try to wean to zero before to see if there was any difference in pain. They just assume it must be helping, and if you keep going to the appointments, they keep prescribing it. |
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Oh my greyeyed, I can't imagine the stress of what you are going through. Paid caregivers are so hard to manage. I am a nurse and I worked for an insurance company who managed the Medicaid (TennCare) program in Tennessee. Some of the agencies I got caregivers through were really good but most were not. It was hard to get and keep really good caregivers. They are unlicensed low-paid people who don't know what they are doing and frankly don't care as long as they get a paycheck. Long term care in a facility can have its problems too. Luckily my daughter works for a long-term care facility so if it comes to that for me I will have an advocate on site. My big issue right now is that my HWP is lying to me. Obviously he knows enough to realize he has done something that is unwise but he lies to me about whatever it was and how he "fixed" it. He has started to decline at a rapid rate in year 6 of the disease. I won't be able to take care of him at home when he as advanced as your Mom. I'm just venting too but it helps to be here and know I am not alone. I hope that helps you too. |
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| Bless your hearts both of you Greyed and July. I don't know which is/was worse. Trying to be a good caregiver or living without him. All I can say is hang in there and get help for yourselves whenever you can. |
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I finally gave up and asked for a new caregiver about 6 weeks ago when mom's pump broke, and we went back to the pills for a week. On that Monday, I called the caregiver and told her that mom needed her 9am pills at 9am because the pump broke, and the timing was now very important. The caregiver answered and said mom was sleeping. I told her it was ok to wake her up to give her the pills. Long story short, she didn't give her the pills until 9:40am. (The only camera she didn't turn around, the one on mom's chair, recorded her giving the pills at 9:40am and saying, "These are your 9am pills.") ... Anyway, that was the last straw. She would get confused using the microwave (she always put 22 minutes and 22 seconds, then waited until she thought whatever it was was hot). She put the canned fired extinguisher next to the Pam Cooking spray--something I expected mom to do, but not the caregiver. She argued with her about the wet towels on the bed. She kept complaining that the dish soap was too harsh to wash her hands with, and her doctor told her not to use dish soap. (There were bars of soap in the house, for cryin' out loud.) ... Anyway, the new caregiver is much better. She wasn't afraid to help us try pushing the extra dose button on the pump, even though it technically broke the rules (ultimately it didn't work). And she would change the dog's water once in a while, even though they are not technically supposed to do pet care, or whatever. (The old caregiver told me I should change the dog water more often because of bacteria. There is nothing more annoying to me than needing a caregiver to help with this enormous job, and they tell YOU what more YOU should be doing. Good grief.) ... And she also picked roses off of our rosebush without asking. She did put them in a vase for mom...but others she took home for herself. She also brought some flowers from her home for mom, so I guess that was supposed to even things out, but I thought it was weird. I can't imagine clipping someone's roses without asking them first. ... Anyway, the new one is much better. (And we switched back to the sinemet/entacapone/sinemet CR schedule from spring of '24, and program 1 on her DBS. So far, so good. She's had some dyskinesia, but manageable and only 30-60 minutes. And she's moving around again, toileting herself again, going into the kitchen again, and her mood is better. I have no idea why the Vyalev just wouldn't consistently work for her. I also told the doctor we wanted to stop the Rytary and go back to the sinemet because she was better on the sinemet. The doctor immediately said that was fine.) |
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july7553: I meant to comment on the lying. Mom has done this before also (many times). Sometimes it is lying, but sometimes it is more confusion/dementia related. It always SEEMS like lying to me because what she is saying is not true, and it is about something she did or didn't do. But sometimes she just doesn't remember, or the reason she did it was compulsive due to the meds/disease, so denying she did it is a complicated mixture of things that sounds like a lie to us, but may not seem that way from their point of view. ... Even so, I do find myself arguing with her when I probably shouldn't. She'll say something like, "I didn't put that in there," and I'll say, "Well it was on the counter 20 minutes ago, and now it's in the microwave, and we're the ONLY two people here! The dog didn't put it in the microwave." Then I feel bad, and try not to get angry. |