For those who care for someone with Parkinson's disease
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I'm just venting here so bear with me It just seems like whatever I do for HWP isn't good enough. For instance I help him put on boots or shoes, have them all tied up nicely, he unties them and tries to re-tie them himself. He accidently spills something, I get a towel and mop it up, he takes a paper towel or tissue and does it "better". I poured OJ for him this morning, he put it back in the fridge and poured himself cranberry juice. OK I know he likes cranberry juice, but he never says anything. (That's another subject - his inability to talk when I bring up a subject for discussion) He drops food in his lap, I hand him a napkin, he says I need a knife to scrape it off. Each little thing is not a problem, but it goes on and on like that every day. All the stuff I do for him, he just makes me feel inadequate. |
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poollady I am saying a prayer and hoping you get the answer you need. I have learned that venting is a good thing for a person to do & not hold it in. Ben1 |
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Hello PoolLady: I can understand how frustrated you must feel when your care and attention is met with such contrary behavior. Even when we know he would not behave this way without PD making him, our feelings become bruised, exhausted and in need of of reciprocal care that can no longer come from the person we need it from the most. Of course you feel hurt, and tired, and perhaps unappreciated. May I offer that on some level he may be trying to apply the last vestiges of his own power of choice even if he cannot express it kindly? I hope being able to share your feelings here can help you recuperate strength for another day. Although there are limits to the lengths this forum extends, we are here to listen to each other and you are not alone. I am, and others are, listening to you. I will be checking back frequently for anything else you need to add or for anything anyone else might need to share. I have appreciated the responses to my posts and am here to respond to yours as well. Wishing you the patience of Job…. NoMatterWhat |
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Thanks NMW and you too Ben1. I think you're right. He's just trying to do things himself that he used to do with no trouble at all. It must be really frustrating for him. Just being able to express my feelings on this forum helps a lot. Take care of yourself too. Best wishes to all of you! |
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| Need some venting today. I can’t help but feel a little bit of resentment and I can’t share with anyone but you guys. My DH of course is suffering everyday with all the ups and downs of living with this disease and he is doing the best he can (about 12 years in) but I can’t help but feel like my life is being sucked up by this disease too. He has the physical and mental symptoms and I only have the mental ones but it’s still hard. My life is intricately entangled with every aspect of his life so I feel I have the disease too. I hold my resentment inside and never express any of it and never would but maybe this is not a good thing to do. Does anyone have similar thoughts or am I being selfish and silly? |
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| Omg! I am exhausted trying to help my spouse. Nothing I do is right. In addition to PD he had open heart surgery in November and has to go to Cardiac Rehab twice a week. It is at 10:30 am and we need to leave at 10:00 to get there on time. I set the alarm for 7:00, reminded him again at 8:00 that he has Rehab. He got up and went to the computer room. At 8:30 I reminded him he hadn’t taken his meds yet and needed to eat breakfast. He finally came to breakfast at 9:00, after reminding him again took his meds at 9:30 (usual time is 8:00) at 9:45 I asked him if he needed to change clothes and he said I’m going to take a shower. I said we need to leave at 10:00. He told me to quit nagging him. He went upstairs to take his shower and get dressed. At this point I’m furious. At 10:10 he called down and asked me to come upstairs, I went and found him with his shirt and one sock on, and he said, I don’t feel up to going today, at least I tried. I just turned around and walked off. I know he realized how late he was and was struggling getting dressed by himself. (I do help him at times) he also knew I was pissed. I chose to walk away so I wouldn’t say anything to just further aggravate the situation. This is similar to what we go through every time we have an appointment… I AM SO TIRED. It’s exhausting dealing with his stubborn childlike behavior. He came down after he finished dressing and scolded me for not being understanding when he doesn’t feel well and he’s tired of me nagging him and treating him like a kid. I lost it… I said it would be helpful if you didn’t act like a child. You didn’t really try or you would have gotten up when I reminded you the first time, you would have taken your meds on time you would have showered, dressed and ate breakfast before you played on the computer. I understand if you don’t feel well but tell me that coming out the door not after you dilly dallied to the point you were so late it didn’t make sense to go. And I’m still crying. I’m trying to be patient and kind but he pushes every button. It’s sad but so comforting to know I’m not the only one who struggles. Thanks to you all for being a safe place to vent. |
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oh my, I am so very very sorry. I have been in your shoes, as my husband passed several years ago. Please allow me to share what helped me navigate through some of the feelings you all have mentioned. I, too, had all kinds of appointments that were to help my husband. PT, music therapy, exercise, etc. As the disease progressed it just got harder and harder to get him to go. We had many of the same issues mentioned in this thread, compounded by the fact that we still had young children at home. It is so very hard. What helped me is when I realized that I had to let it go. One day I just realized that all of my begging, pleading, crying, and attempts at reason were not only not working (they were not making my husband get ready faster, or at all, for his appointment), they were stressing my husband out, making him feel bad, and making me upset as well. If he didn't want to go to PT, I could not make him. I could wash him, give him his meds, cook for him, do his laundry, everything, but I could not exercise for him and if he did not want to do it, then I had to accept that. It is very, very hard to get to this point, and excruciating to surrender yet another aspect of your life to the disease. But once I did that, things were calmer and we did not have the stress of preparing for and getting to appointments my husband did not want to go to. Did he progress faster because he would not do the exercises? Who knows, but I do know that my trying to force him to go to exercise or music therapy class caused him stress that I will never forgive myself for. It's a big adjustment in your thinking and attitude to get to this point. It is painful, exhausting, depressing, and I felt like we were just giving up. I remember telling my husband at one point: "It's so hard to be the cheerleader when you've given up the game." The other aspect of getting to this point of surrender, or acceptance of where you are in the disease, is that as the disease progresses, the patient's ability to care about getting better disappears. They lose motivation, and chemically just cannot gear up like they used to. It is heartbreaking for both them and you. It is hard to envision a time when you no longer go to these kinds of appointments, or try to go. After I had surrendered on trying to get him to go (one of many surrender milestones), I realized that, without a cure, at some point he would quit going, he would not physically be able to go, it was only a question of when. You have to decide when that time is. Get input from your loved one, if possible. Gently say something along the lines of "It doesn't really seem like you want to go, or that you get much out of it for the effort it takes you to get there. Do you still want to go to PT/music therapy/exercise class? I'll do whatever you want, just let me know." Maybe talking about it when things are calm can help you reach a decision that results in less stress for everyone. I hope this is helpful, hugs to you all 
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Lurkingforacure…thank you for trying to help us. You are so kind to come back to this site and offer insights to us. I’m sure there are times all of us feel resentment toward our mate ….the problem is our affected spouse is so sick and compromised, that we have to “eat” our feelings and that’s not good for our mental health. I am trying so hard to stay healthy physically and mentally. I just pray that this disease doesn’t take us both down. I went to a therapist and was so disappointed in her. Ended it at 45 minutes and yawned twice. I never went back. Sparkysgal…I so can identify with the challenge of going to appointments. We have cut back dramatically on trying to do all we are supposed to do. DH said he doesn’t want to go to PT so I said fine and we moved on. Even the dr who put in the DBS doesn’t force appointments so we haven’t been there in quite a long time. If DH has to go in a yr or 2 for another battery replacement (in the chest) I DREAD that. The last one in ‘20 was tough to get thru and now he will be even more fragile. We go to the general doc, oncologist and urologist and that’s about all he wants to do. Only made it thru that Boxing class once and said he couldn’t handle it. Yesterday, he pulled the towel rack off the wall in the master bathroom. He is starting to tip backwards more often so that’s what caused it. He then tries to fix what he broke and that causes even more marital friction. He cannot do what he could before so I think WHY EVEN TRY? If I say don’t worry about it I will get a handyman to put up a new one, he feels inadequate and then he gets feeling down. What a negative cycle this all is. Feels good for me to vent. I can’t tell family members this stuff. They don’t seem to want to hear the nitty gritty details of our lives. His sister is a negative person always ready to find blame with every little thing. I always feel if I say anything she will point the finger at me that I am not doing enough or doing things the right way. She cared for his elderly mom for years so she is the know it all now. Great, even more negativity to deal with. I stopped sharing with her. Maybe that’s how she likes it. Twelve years is a long time to be dealing with all of this everyday. I am thankful I don’t have to raise kids though simultaneously…you out there doing that…you have my prayers. |
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WOW! I know what all of you are going through. I face the same challenges every single day. I would've responded earlier to these posts but I have been out of town and didn't have good internet connection. Anyway take care everyone. Be sure to take care of yourselves as well as the PWP. |
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I finally got back on this site. It accidentally got deleted. Now that I'm back on I can breathe a sigh of relief. So how is everyone doing? I'm hanging in there taking it one day at a time. Hubby had an appt with a nuerologist at the Cleveland Clinic yesterday but they call and cancelled it...rescheduled for April 17. He has a cold now which is not helping with strength and he has fallen several times in the last few days, most recently at 1:30 this morning. Oh well at least I a few hours of sleep. |