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miracleseeker

Loss of confidence

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I hope  you all will continue to post, and will continue to help those of us with PD as our conditions evolve and we need more and more help from our caregivers. My DH has been a rock ever since I was diagnosed and continues to support me in every way now that I am wheelchair-bound and dependent upon others for basic care. We have been married 48 years and I keep thinking that he would be so much better off without me. But he insists that in the reverse situation I would do the same for him. I love him dearly, and tell him so often. Our 3 children are grown and have families of their own, but would do anything in the world for us. There is great comfort in that knowledge. I wish the same were true for everyone in a similar situation. Thank you all for everything you are doing.

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Thanks swamper!  I wish my family situation is the same as yours.  My dad died years ago so my mom lacked the security of having a spouse to count on.   All my siblings left home so I stayed behind with mom knowing one day I will be left holding the bag.  I do believe everyone has a purpose in life and I'm fine with my decision.  I do whine and cry when it gets bad because I am handling it alone but it is what it is.  I also have days where I wish my mom would just go in her sleep but it's just stress talking.  Your DH needs you as much as you need him. 

 

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Tom and others,

my DW sabotages a lot of things so we can't do the trips. I have an afternoon off so she schedules piano lessons that day, things like that. I talked to the neurologist and she doesn't think it is dementia. It is mild cognitive impairment as far as I know. In the past it was hard to tell since the medication side effects caused so many problems. I have told her that she takes me for granted and went through all of the things I have given up for her. She was upset and felt sorry for herself that she had done that, but not for me so I had to console her, not the other way around. It is always that way, She is a difficult person to deal with. Her one aunt at the family reunion this summer said it must take a lot of patience to deal with her. I really had a bad day yesterday. It was my afternoon off and I was going to do something and I couldn't find something I needed (a vest with my license) so I couldn't go. I went over all the places I might have put it and tracked down a son with one of the trucks and couldn't find it. I asked her while we were eating supper if she had seen it. She went out and said here it is. I had taken the vest off Sunday morning and she had hung it up somewhere new where nothing had ever been. I was so upset, she constantly moves and puts my things away, but the kitchen, bathroom, dining room, back room, and our bedroom are a mess. It is mostly her stuff. She just says that's the way it is and acts like I have nothing to be upset about. I had just told her how it drives me nuts when I can't find things the kids use and don't put back in the right place. She is in her own little world where everything she does is right and anything that isn't is just a mistake. Sometimes it is like she tries to push all of my buttons at the same time. It gets to the point where I don't even want to go home at times. I am sure others have felt that way. We also can''t talk about anything except what she wants and she always knows best so nothing really changes. She has turned into her father in a lot of ways. She just left on a trip someone invited her to go on. It is like a burden was lifted off of me for a while. I can clean the kitchen while she is gone, she won't let me unless she is gone  or in bed otherwise. She will physically stand between me and the sink so I can't. She did tell me once she feels guilty that she doesn't do those things. She won't let me cook in the same way, etc., etc., etc.. Her ego is such that she has to be seen to be as good as everyone else. I am going to paint the bathroom ceiling while she is gone since some mildew developed and she wanted to get a professional since I might not know what to do. She treats me like I am incompetent when she is the one that doesn't know much about things like that. She also doesn't tell me about things going on around or in the family then acts like I am stupid. It is all about power and she wants to be in control. The kids don't trust to do so many simple things for them anymore. She finally screwed up enough that the son that didn't live locally doesn't trust her now either. Not a good thing with a marriage let alone dealing with PD. We have gone to counseling, but it does some good for me, but not her since she thinks she doesn't do anything wrong. There is more, but this rant has gone on long enough. Thanks for listening. I will enjoy my vacation now. Have you noticed I haven't talked about dealing with the physical problems?

 

Coach T

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If she was like this before PD then it's just her!   We have to remember that bad people get hit with diseases too.   You are a loyal and good man so I assume this is the only reason you stay.  It really shouldn't have to be this way.  My sister has the worst temper and she's a tyrant with my BIL.  He just takes her abuse year after year and she is in control of everything.  One time I asked him if she is bipolar and he kept quiet.  Don't ask don't tell.   I hope you have a quiet peaceful break.

 

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Thanks all,

I am going to do some things I like that she doesn't. Also, by nine she is ready for bed most nights. What got me was the time that she said I was the nicest guy she had ever met and that I treated her so well, but that I had changed. She had changed and now I don't put up with a lot of stuff any more.

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One good thing is that I started a low carb diet yesterday and I will be able to stick to it with her gone. I have a chance to lose ten pounds or more if it works out. Less stress and eat what I want when I want. :)

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Miracle Seeker,

I was thinking about what you said about being taken for granted by my DW. I told her that and she said, "I say thank you." I said that is just good manners. It just shows how she can't even understand the issues.

I have also lost five and a half pounds in the first two days and am sleeping better. I know a lot of it is water weight, but it is better than nothing. I'm not going to say anything to her and see if she notices when she gets home. She never notices a hair cut or anything like that.

 

Coach T

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It really shows how stress can affect us when it is relieved even for just a small amount of precious time.   I wonder if your DW will use the victim card if you ignore her or downplay her discomfort next time she complains.

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Miracleseeker,

She never plays the victim card, she just ignores my needs because she knows best. She is the same most of the time about the PD. She said not to worry (even plan) about the future because they will come up with a cure. I was surprised a couple of months ago when she asked me how I thought she was doing. I said she was doing much better than a month before. Mainly because her problems with switching her DBS every day had been solved and her brain had settled down. Now she is getting worse again. It seems to be accelerating with the problems she had before DBS coming back, but faster than they originally did. We will see.

Thanks for the reply,

Coach

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Miracle Seeker.

down 16 lbs and I have until Tuesday, maybe I can make 20 lbs off by then. the weather is terrible here.

Coach T

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I am going low carb, plus with this cold weather I am getting more exercise. Also, my plantar fascitis pain is gone so I am walking. I would like to lose forty pounds overall and the way she cooks I can't do that with all of the carbs, (Carb Queen). I also do stress eat and she stressed me every day. It is so hard just to have a conversation with her, and I admit I am getting defensive. I am always afraid of what she will do since she hears about half of what I say and thinks I said the opposite of what I did say. It is so hard to parse your words so that things are communicated well. I gained 10 pounds per kids so I gained forty pounds.

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I hope you can keep up the walking.  CG's and PWP have different perspectives of what they are going through.  "You don't understand"  is true for both parties.   I need to quit complaining and  keep everything to myself.  I'm damned if I do and damned if I don't.  I just can't win.

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Miracleseeker,

I know what you mean. She will ask me my opinion about something and if I don't say what she wants to hear she gets this big scowl on her face. Tomorrow is the day, but I have lost 18 lbs total so far. 25 to go to get where I was when we were married. I have also put on a lot of muscle so we will see if I can get to a six pack. I have one now but it is covered in insulation.

 

Coach T

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Update,

Things have slowed down, but I am down 34 lbs so far. I gave blood last week and my resting heart rate was 63 and my blood pressure was 103/58. Something positive there I think.

Coach T

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