Helping Those Who Care for Parkinson's Patients
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When dad passed in January of 2023, I tried for a time to see if mom could get along at home alone while I was at work. Suffice it to say, she couldn't. She did ok sometimes, but one day fell down and couldn't get back up. It freaked me out a little because A) dad just passed away, and B) she fell outside the reach of my internet cameras so all I could hear was her saying she needed help. I went home early that day, and she was fine, having fallen on a pile of dirty clothes (and missed a couple of doses of meds). Nevertheless, I couldn't leave her alone anymore. ... So we hired a caregiver through the same local outfit that sent someone during dad's last two months, and this caregiver (different than dad's) has been with us since then (just over two years). ... We did 6 hours a day at first, but mom improved with some DBS adjustments, and the caregiver was just sitting on the couch for at least 2 of the six hours anyway. So I changed it to 4 hours a day a few months into it. (We actually could have kept it at 6 hours without much problem, but it wasn't worth the money for what she was doing.) ... The caregiver has been ok, not great. She started out being late almost every day, until one day she was 40 minutes late and I contacted her supervisor. It improved for a time, but then she was 5-10 minutes late every day. I really try to give people the benefit of the doubt, but her supervisor called me yesterday, concerned that she was not doing enough. I think mom and I were a little attached because dad had died. In any case, I told the supervisor that the caregiver does sit down a lot (playing on her phone), and she doesn't make the bed (she puts the incontinence pad down and that's it--I end up doing the rest at night). She often puts her empty water bottle on top of a full garbage can and leaves at the end of her shift (so I know she saw the full garbage can and left it there). ... Anyway, the supervisor nudged me to accept a different caregiver who worked harder because we are spending a lot of money on this, and much more should be getting done. I agreed, because it was all true (we had a sub caregiver for a few random days over the last month, and she was reporting back to the supervisor). But mom was a little sad about it and doesn't want the caregiver to lose her job (I don't think she is, but I don't really know). I kinda felt bad about it too, but I'm tired too, and I end up having to do all the odds and ends that don't get done when I get home. ... But I think both mom and I were more attached than we realized. Anyway, it is what it is. I checked the cameras today as this caregiver is supposed to finish out the week--and she didn't seem to mention it to mom and was being very nice (not sure if the supervisor told her yet, but probably). I wish I didn't feel bad about other people not doing what they are supposed to be doing. But it's been two years and I'd give her a D or C- . |
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Hey Greyeyed. So sorry that you have this (completely understandable) exhaustion with this type of emotional baggage. Why do some people do this? I feel like I can really identify with you - not about the care help but with the aggravation with a person with whom there is an understood agreement (for her to be paid for a job done). It is so hard to accept that some people do the absolute minimum in any situation, or less. How do they get through life? Things sure are complicated. It is just another thing -not just for you but for your mother. The amount of energy it takes to call up a supervisor and address this kind of an issue is just so hard to come by. Talk about preying on the vulnerable. You have spread yourself so thin, my heart goes out to you. So, consider this a hug. Let me take this opportunity to tell you, you are doing a great job. Feel that and let it help you feel resilient. You are all doing a great job, friends. We are a community of strong people whether we take time to realize it or not. Happy weekend. NoMatterWhat |
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| Yeah I can see what the problem is. I would like to hire a caregiver for hwp but the minimum time is 4 hrs a day. We only need help to get him showered and dressed each morning - 1 hour at most. Then we leave and go to our store next door. So what are they going to do for the other 3 hours?? Just sit around the house and play on their phone or watch TV? Seems like a waste of money to me. Even though I could definitely use the help. |
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| I got mom a walk-in tub in August, but she only uses the shower attachment (which is fine). If she takes a shower with no help, it can rarely (one every 3-4 months) take 20 minutes. Most of the time it takes at least an hour, usually closer to 2 (and occasionally I can't get her to leave the bathroom for 3 or more hours--I do all the caregiving on the weekend). The caregiver does get her in and out within an hour, which is nice. |
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This month has been pretty full of at-home physical therapy, occupational therapy, a social worker and an aide to help my HWP bathe and dress one day per week. (This all came after there were two episodes of weakness, confusion, etc though we now know there were no strokes involved.) I have been grateful for the help and we have needed it. The shower aide, though, has left me feeling glad that she will not be coming after next week. I told her when she first came that we are on a well and that since the farmer up the road completed an extensive drainage project our well has suffered and the well can run dry. She turned on the taps full blast and ran them the entire time it took for my husband to get undressed for the shower which took longer than the shower itself. I have also explained to her that my HWP is very sensitive to the water temperature and needs it just above lukewarm or it will feel too hot to him. I hear him telling her to turn the temperature down numerous times and my heart rate just explodes. We have had a really rough time adjusting to the new medical equipment in the bathroom but at this point I will just be happy to be left to ourselves to work it out. (I have to say, I am not sure which one is giving my husband a harder time - the shower bench or the over the toilet commode. I believe they are both running about even at this point) I have been forewarned that after next week there is no approval for additional help at this time but that there are private options for caregivers which, as you all stated, have a 4 hour (3 hour?) minimum. The variability of the cognitive issues makes it impossible for me to feel that I can take steps to use one of those services. My husband's mental decline within the last couple of months has left me researching how to deal with caregiver stress. I have been reviewing the information and trying to find ways to help myself. I realize I just cancelled a doctor's appointment today. (With my husband's extreme dementia I just could not feel comfortable leaving him in a waiting room nor could I picture my pap smear appointment with him in the room...) Hearing what to do and being able to put it into practice are two very different things. NoMatterWhat |
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| Not sure if the caregiver was told she's not coming back after today (Friday) or not, but mom said she did have an attitude today (but she often does, so it's hard to tell). She ran out of laundry detergent so didn't do the laundry (I think she pours too much of the detergent in for each load, but I'm not here to stop her during the day...so...), didn't make the bed (she never did anyway), and pulled the curtain I have over the sliding glass door downstairs mostly off. I have that curtain held up with clothes pins because the downstairs needs some work I never have time to do, but the caregiver seems to want light down there so pulls the curtain aside every day. She often pulls it too hard and the clothes pins come off, but this time it looked like it was on purpose and there were clothes pins all over the floor (I had it pinned up pretty good since she had done that before). At this point I think I'm done feeling bad about it, even if she does get fired. Either she doesn't like her job, or didn't like mom or me, or whatever. She was 27 (25 when she started) and too often acted like a moody teenager. I deal with that enough teaching school. (Also over the last two years she pressured mom to go back to 6 hours a day, told mom how much mom could get for our house if we sold it, asked if we were going to keep dad's tractor, wondered aloud if we were getting rid of dad's truck, and recently was apparently asking mom if she could buy or "have" dad's guitars (some are worth several thousand dollars). I shrugged off most of this because mom gets confused and I'm not always sure if she interpreted the conversation correctly, and what bits and pieces I can see on the internet cameras don't always tell the whole story, but I think enough of it was correct to make me feel better about getting a new caregiver.) |