For those who care for someone with Parkinson's disease
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hello - Has anyone noticed personality changes? Specifically, that the one with Parkinson's has become manipulative? |
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Yes somewhat with my HWP Sometimes he's just plain nasty even when I'm saying something nice, he may just snap back at me. What I've noticed is that if he has something else on his mind, he can't think about anything else. Like he'll say "Can't you see I'm eating here?!!" Well, yeah, but so am I. Or "What's your hurry?" When I just simply asked are you ready to go? Just hang in there and try to tolerate his behavior. It could be entirely different tomorrow. |
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Hello seashell & poollady. This subject is one I have been wanting to address. Forgive me for the length but I need to unload today. You guys are my outlet. Parkinson’s has numerous “features” that the caregiver must contend with. I have definitely noticed a personality change in my HWP (31 yr marriage; 33 yrs together) because he has had this disease for SO long that he has become increasingly burdened by it and this, in turn, affects his mood & how he relates to those around him….mostly ME the caregiver, of course. Of course I feel so bad that he has to go through this and it is making both of our lives difficult. I know he’s not doing these things on purpose. (Although he may “milk” it once in a while and, as you say, act a little manipulative sometimes). He says he is not doing that at all. If he had his choice he would not ever speak harshly to me or cause arguments. If he had his way, we would be happy/active & he would be the fun easy going guy he used to be. The way it was back when we used to have a marriage. I feel now like we aren’t even really married; in the traditional sense. & it makes me so sad but I’m getting tired of being sad all the time. We are just patient and caregiver living together; struggling to try to make it thru each day. I don’t mean to sound so negative but my HWP has been dealing with this since, at least, 2010. That’s a long time & I am getting TIRED. I do have empathy for him and always have. Now the day has come where I am a senior and I have my own health issues that I must contend with…. this complicates our delicately balanced life even more! God forbid the caregiver gets ANYTHING. All attention is always on him but now I have to leave him more to go to my own doctor appointments. Trying to do this, of course, adds to the daily tension & anxiety that he is already experiencing about every little thing that is out of the ordinary. As if he didn’t already have enough anxiety. Anxiety is the name of the game constantly. Yes he is on Lexapro but that doesn’t solve much. I pray I don’t burn out. Every little thing we try to do seems to be such a huge difficult thing (not to mention argument inducing) that I find myself just NOT doing the things we used to do or not doing things that need to be done. This is the point where things (both personally & house-wise) begin a downward slide unfortunately. Keeping up appearances is tougher than ever. |
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Hello, my friends: Let me express the care and concern with which I read these entries. I know we are all struggling and reading these makes me want to reach out and hug you all. I realized I had just found myself missing my marriage too. We only go to doctor appointments and I miss him when he is standing right in front of me. I, too, pray for the strength and sanity our future together will require. Glad you friends reached out-I am here for you and I am so proud of you all. It is so brave to strike out on each day with the intention of making it the best it can be. NoMatterWhat |
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I lost my husband to PD two years ago but still research this awful disease, and I come back here from time to time-this forum saved my sanity so many times. Daytoday made the comment that keeping up apeparances was getting harder....this probably won't surprise anyone, but as hard as it may be to keep up appearances now, it will become impossible. If I may offer some advice I wish I had learned earlier in my caregiving journey, it is that you have to let stuff go. Everything, actually. You will simply not be able to keep things going as you used to, unless you have tons of money and a maid, lawn service, etc., you just can't. You have a finite amount of time and energy, and your loved one will need an increasingly larger percentage of both as time goes on and the illness progresses. Once I finally realized that the world would not come to an end if I didn't get the floors vacuumed, or the lawn mowed, or the dishes done before I collapsed at the end of the day, etc., and just accepted that "this is where we are today and I've done the best I can with it", it was such a relief. I had to learn to meet my husband where he was, that day, that hour, instead of trying to keep him active in our family's world (my way of denying how PD was taking over our lives). Talking to him and expecting him to engage with me about the kid's new teachers or an A one of them got on a test was only setting us all up for disappointment, because he was too distracted by his pain and how shitty he felt to participate, and later, he could not follow the conversation. I guess I got to a point where I just didn't care anymore about things that were not critical to my husband's care or immediate needs of our kids. And I was able to not care anymore because I realized the more help my husband needed, the more impossible it was for me to continue doing it all. Once I got past my pride at not being able to continue doing everything like I had been, it was an unexpected relief to let so many things go so I could take care of the important things. I wish I had learned that earlier 
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Thanks everyone for the insightful words. Just knowing that I'm not alone in our struggle helps. Like you I just feel like I'm practicing to be a widow every day. The wonderful, caring, loving, strong husband I used to be married to is gone. So I've (like you) am learning to take one day, one hour at a time and not take it personally. |
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We should start realizing that we have to let go of trying to do everything….for our own sanity. Letting go is hard to do. We are so programmed to do everything that trying to reverse that way of thinking is a new concept. I will work on that. Sometimes I feel like my husband is so scared down deep inside that he wants me to experience every little nuance of what he is going thru so that he doesn’t have to experience it alone. It is this practice that makes me worry that I may actually go before him….it makes life too stressful. I try to help him as much as I can but if my thoughts even stray to maybe doing something for myself, socially or whatever, he pulls me back into the misery he is in and wants me to just constantly do do do for him. Feels like I am sounding selfish. I can’t help it, sometimes I need to be in order to keep ME. I feel like I am somewhat disappearing. What is the rest of my life going to be like? Caregivers can get smothered by this disease if they don’t look out for themselves a bit. |
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Day to Day, the way to look at it is this: How can I take care of him if I don't take care of myself? You definitely need some time just for Yourself. Try to find a church group or family member or Visiting Angels or someone to take care of hubby while you and friends go shopping or to a movie or play or whatever. Think of it as actually helping HIM |
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The one way that my husband may be manipulating me is by his refusal to make any food for himself. He was always a great cook and did most of our cooking, but now cooks absolutely nothing for himself. Yesterday was the first time in months that he actually grabbed some fruit from the fridge for himself. Usually, he just asks me for what he wants and I get it. It is tricky with a walker, but still… I feel like he could sit at the counter and help with cutting up vegetables or do other simple and time consuming food prep things, but he doesn’t. I wouldn’t want him carrying a hot dish or a knife because he falls a lot, but he should be able to grab a snack from the fridge, right? I have also found that he is generally nicer to me so far. He thanks me a lot as I do things for him and actually empathizes with me as he knows that I would be so much happier if I could get out and go places with friends. Unfortunately, our lives revolve around PD. We rarely do anything! I have a paid caregiver for 3 hours per week and am adding an extra day soon. That helps a lot! Surprisingly, He has even accepted these “babysitters”. I think he is being so nice largely because he is afraid of having to go to a nursing home. |