Helping Those Who Care for Parkinson's Patients
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Mom and I had a minor argument, leaving me overwhelmed again for a couple hours. ... I had to take her to her Prolia shot today at 4. I got home about 3:10, and she was dressed and ready as far as that goes, but she was clearly in off time. I gave her a quarter sinemet on top of her Rytary, but that wouldn't kick in for at least an hour. Anyway, she's going slow, and I'm trying to get her out the door and in the car so we won't be late. That in itself is a half hour argument. ... Then we get there, I roll her in on her walker, we get called in within 10 minutes, and the nurse says that she hasn't had bloodwork in 8 months so she might not get the shot. So that annoyed me, and mom's still going slow. Finally they decide she can get the shot, and we leave. By 4:40 in the car she's finally better. ... She's still doing well before 5pm, so I wait until 5 for her Rytary (I usually give those 10 minutes early because of off time in the evening). Before her 7pm pills she's moving pretty well, so I wait until 7pm for those pills. She's doing fairly well at 8pm, so I go to the store. When I get back at 8:30, she's clearly off and anxious, and won't stop asking me for ice and tea and an icepack and helping her up and on and on and on. ... I told her she needs to put a large, flat pillow on her chair so she's high enough to stand up on her own. It was working a few weeks ago but my first day back to school she tossed it behind her chair. She promises me she'll use it from now on, then 10 minutes later she wants me to take it off the chair because the pillow is hurting her. Why I'm arguing, I don't know because it's pointless. I'm telling her it's a pillow, it's soft and doesn't hurt. Then she's crying and I'm mad, and she's asking if her brothers or the caregiver want me to put her in a nursing home. ... I tell her I just want her to try to help herself once in a while and do what I ask. More and more she thinks the things that help her actually hurt her, and the things that make her worse make her better. Up is down, left is right, etc., it just drives me NUTS. ... On top of that the doctor suggested I try giving her the Donepezil at bedtime and see how that works. I've only been giving her a quarter pill at bed the last 2-3 days, and although she didn't have diarrhea this time, she was going a lot today. And with the "hard" off time with crying, etc., I think I've just given up on it. Google tells me it can cause worse off time in a small number of people. ... I wrote too much again. I'm just angry and I have no one to tell. |
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this is the place to let it all out! No judgement. I get so frustrated with my PWP sometimes and it's nothing compared to what some of the caregivers here deal with. We just found out Thursday that my husband's right leg is once again clogged up. He has vascular issues and has several stents in the right leg and has had femoral artery bypass in the left leg along with stents. So now we are scheduled for the 2-3 hour procedure on 3/31. Getting him to any of his appointments on time is a challenge. He still thinks he can shower and dress in 30 minutes. NOT!!! It's a battle every time. To get to a 9:00 appointment we have to get up at 5:00. For this procedure on 3/31 we have to arrive at the hospital at 6:00 am. It's going to be a very long day. He has drawn every short straw it seems. Parkinson's, heart disease, vascular issues, diabetes, and this past fall cancer in the form of a melanoma on his arm. Fortunately that was removed along with Lymph Nodes in his armpit and the lymph nodes came back clear. Whew. OK I'm done whining for now. Just know that the folks here get it, we understand the frustrations and hopefully can provide you a safe place to vent and give you some encouragement. |
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Mom finally stabilized this evening at 6pm. At 5pm, I gave her a quarter of her old sinemet on top of her Rytary, and turned her DBS all the way up on the program that works the best. At 6pm she was better, so I gave her another quarter sinemet. She was still good at 7pm, so I gave her Rytary plus another quarter sinemet. 8pm, another quarter sinemet. At 9pm I just gave the Rytary since it's getting close to bed time, but it's now 9:30pm and she is still doing fine. ... Usually with that much extra meds, and the DBS turned all the way up, she'd at some point start with her obsessive cleaning and mumbling, but so far she's just even and watching tv. It's the calmest evening I've had in weeks. I hope this doesn't mean she takes off in the middle of the night. I'll be turning the DBS back down in a few minutes, but sometimes that doesn't seem to matter. The effects of the regular sinemet doesn't seem to follow into hours later like the Rytary sometimes does, seemingly kicking in at random much later. ... My hope is that after a few days, whatever withdrawal or lingering effects of the Donepezil will subside...if that's what the problem was, but I'm pretty sure it was/is. |
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Oh how I appreciate you all. We are all dealing with such similar problems. I am feeling very frustrated too. I am trying so hard to tell myself that the only objective is my husband's happiness, safety and my patience for him, but it is always something. We end up in a debate/argument/disagreement which bates me into feeling upset. On the worst days it feels as if he is sabotaging my efforts, which is of course not true. We just end up talking in circles. Due to my TBI three years ago I have many challenges of my own. The worst of these issues seems to be my inability to roll with the crazy things he says. It is taking all of my ability to get the necessities done and then he throws crazy statements at me and I am stopped dead in my tracks with smoke coming out of my ears while I rack my brain trying to make sense of what he just said or did (which will not happen because the sky is not green nor the grass blue...) I don't seem to be quick enough to tell myself that what he says does not make sense until I have wasted my energy trying to take him seriously (though I am only starting the day with a quarter of the energy I would have without my injury). I have been working on my lack of patience and am still looking up how to care for someone with dementia. I have learned a lot and am trying to model my own behavior after the examples in the videos. We signed my HWP up for more physical therapy because he is so stiff and struggling to keep any range of motion. We went to repeated appointments which were only available too early in the morning which, as you all know, only adds to the stress of the day. I have to attend the appointment with him and be prepared to be responsible for doing the exercises with him because his dementia makes it close to impossible for him to do them without me. We leave the appointment and life takes hairpin turns, including him not knowing me and hours with him not routed in reality, errands, Rx runs-so very many prescriptions between us, many appointments, etc, etc. When we return a week later I have to be ashamed that I was not able to handle it all and although we understand we need to do them, we haven't been able to. So then they give us a few more ideas based on his limitations and we are once again off to the races. Same issues, same result the following week at that appointment.... Mixed in with this are also the frequent cancellations because he does not feel he can leave home either due to bowel issues or an active dementia attack. We finally were told that we could hold off scheduling any more appointments. Meanwhile, I had received an offer by our friend who is an occupational therapist who also runs a once a week slow yoga class that we should come to her class and she would help us in the class, that it would be good for us. So, we went. WTF? What Was I Thinking! My HWP was not able to do any, ANY of it and I myself was immediately overwhelmed by the motion, sunshine, unfamiliar equipment,... it was all I could do not to run. Our friend was lovely but I don't ever want to put us in that kind of a position again. I guess I was feeling the need to show him my commitment to his therapy. So much is already gone; it is too late. Trying to deal with this situation has found me boxing up many household items I have no need for now nor do I see a world in which I will ever need them again. I have purchased Tinkertoys and Lincoln Logs for art/play/distraction. I have purchased red dishes with substantial edges to encourage eating and hopes that the food will stay on the dishes. I have gone on too long. Thanks for listening. No Matter What |
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I'm right there with you, NoMatterWhat. ... I started building a home theater set up downstairs in 2014, adding surround sound, speakers, etc., over the years. At first it was because mom used to like going to the movies (the last movie we saw together was that Jodie Foster movie with the big airplane--I just looked it up at that was "Flightplan" in 2005...so that's depressing; she was diagnosed in 2010, but I don't remember her going to a single movie in the 5 years before). I could get her to go downstairs for a movie once in a while after 2014, and dad was really into it the first couple years. Then they both just lost interest. (To me it was like going to the movies at home, because neither of them could actually go to a movie anymore.) ... So in 2018 I invited a cousin on Sundays to watch shows/movies, and that worked pretty well except I had to run upstairs to give mom her pills every so often. ... Then Covid hit, so even those Sundays got canceled for nearly 2 years. ... Then we started up again, but dad got sick in 2022 with his heart failure, and passed two years ago this month (January '23). And mom didn't want to be left alone upstairs on Sundays, so my cousin and I started watching movies upstairs with mom. It's sometimes ok, but other times she is sending me for water, tea, help her to the bathroom, yada yada all through the few hours that are supposed to be the only time I look forward to during the week. And of course we end up watching things she's not going to complain about, or things not too loud for her, or whatever, so once again it's not really "my" time anymore. ... I bought a new surround sound receiver with Atmos and a couple more speakers for myself for Christmas. But it just sits down there and thinking about it depresses me. ... I've been adding extra quarters of sinemet to her afternoon doses of Rytary, and after I get home I've been giving her an extra quarter every hour in late afternoon/evening, and that seems to be working. But even then I'm not much in the mood to watch anything, and my mind is in the habit of just watching her, getting her food, making her comfortable, etc. ... It seems like life has been reduced to so little living. But I know it could be worse, because it has been in the past. |
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Thank you for sharing all the emotions. Frustration, uncertainty, and exhaustion seem to be a common thread between everyone here. I find that I am more frustrated with myself than CK. He is stubborn and his obsessive behavior comes through in watching YouTube on PD. He learns a lot but then starts questioning if he "has it". CK talks about PD dementia as he wonders if its now here. My frustration is feeling like I always have to be is protector or watchman. My biggest concern is: Is he safe? We live 15 minutes from each other. Although he's independent, we've talked about when is the time for a 'roommate'. The richness you share from your hearts is wonderful. I am taking notes, learning, listening, and supporting you. Your insights are very real & helpful XoxD |
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I need to say today was a good day. I made mom do her exercises Friday and Saturday, so I think that may have helped. My cousin came over and we ended up watching two movies downstairs on my theater setup, like it was old times. Mom was fine upstairs by herself. I checked on her every hour or so, but she did fine. I only used a couple of the extra quarters of sinemet today, and may not have even needed those. By 7:30pm or so, she was obsessively cleaning the bathroom again. I turned her DBS down, and she was better by 8pm. She was leaning into off time around 9pm, but not that bad, and mostly got herself ready for bed on her own. ... I figured today was a break from exercising, but I'll have her do as many as possible tomorrow. The more often she does them, the better she is in the days afterward. It's just getting that "virtuous" cycle going in the first place. |