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Topic Guilt Go to previous topic Go to next topic Go to higher level

By hapidawg On 2010.06.01 18:36
Heedee - I don't know how anybody could say they didn't have guilt. How can anyone possibly be upbeat and patient all the time with so much overpowering your every move, every day, month after month, year after year? I am feeling particularly "short" these days. Of course, I don't feel well myself and there is always so much to do . . . so many back and forth errands for the PD patient - are the prescriptions up-to-date, does the car need servicing, bills to pay, is there food in the house that the PD person can chew, are the gardens weeded (finally hired the mowing done), etc. Then, I get short. I have GREAT guilt. After all, he is very ill - and will NEVER be well. He didn't ask for that. He deserves, patience and tenderness - always. Well, almost always. He is not a complainer and is appreciative. Thank goodness.

By LOHENGR1N On 2010.06.01 19:34
hapidawg, Guilt is a common and very normal feeling. Hell, we patients feel guilt also. Guilt for being sick, for being a burden. Guilty for not being able to do that which we once could. Guilt for your sleeplessness, guilt for needing help to do some of the most basic tasks. Guilt for being snappy or saying something mean. Guilt for not hugging or showing affection at times because our tremor or dyskinesia's will be felt. Guilt that we seem to be pulling away, when that's not what we want to do but we're afraid of pushing you away when you feel how this disease has and is ravaging our bodies. Guilt that this isn't the future We imagined, our golden years aren't going to be a rosy sunset. This just skims the surface of the guilt.

I haven't gotten into the guilt caregivers/partners feel, I've just voiced it from the patients side, my side for those who might lack the words or means to express this.

I guess we've hit upon another secondary symptom of Parkinson's Disease; Patient/Caregiver guilt. Thank's to this forum we can lay some of it out here, loosen the load and learn from others. Take care, best of luck and hang in there.

By karolinakitty On 2010.06.01 20:58
hapidawg .... Guilt is a funny thing .... i went through a period at first dx with guilt, but I found a way around it ..... my guy ... he felt it too.
We have only been together a short time and then he gets dx. Tell me he didn't feel guilt. We love each other to the core, and he knows even before PD i would do anything for him. Now, i do, do anything for him. I keep the books, i keep the property, i keep track of docs, meds, meals, drinking, and all the rest.
Feeling guilty at first, due to the things running in your head, did i do enough before, do i really want to go forward with our relationship, all that stuff. However now i feel no guilt ... he feels no guilt .... this is what our future holds and this is what we have to deal with. Later on, as things get much worse, i may have a different story, but i draw strength from knowing that there is a higher power at work here. I know that, no matter what the circumstances, i can draw on His joy to get me through. If i even start to feel sad, or get mad, or feel frustrated, i pull from that source.
Part of the "psychology" of guilt is feeling remorse over the fact that we have done something we shouldn't have. Freud rejected the role of God as punisher in times of illness or rewarder in times of wellness, that may be the only wise thing he came up with. Guilt is also often associated with anxiety and depression. With this said, our pdrs didn't ask for this, we, as caregivers, didn't ask for this, we shouldn't feel guilt. Guilty, that we can't do as we used to do? We try to do as much as we used to, it just takes longer or I have to make sure things are in place to make it easier. Guilty that friends have no room for us anymore.. i say that's their problem. For me life is way too precious to let a little guilt get me down.
I am probably the rare one, i know i am "different" and my outlook on this whole disease is different, and, please, i am not knocking anyone for guilt, i just deal with things in a ..... let's say .... "happy go lucky way" .... some might think i am in denial, that's fine too.... but i know the future is unknown .... and as things get worse i hope to be able to have this same attitude......

By lurkingforacure On 2010.06.01 22:54
I would recommend anyone feeling guilty to read "When Bad Things Happen to Good People". Written by a rabbi whose own son was afflicted with the early-aging disease that took his life before he turned 12, it is a truly moving account of why bad things happen to good people and how we can change our perspective in dealing with and accepting those things. He has a lot of analysis of biblical passages, particularly the Book of Job, and it helped me immensely years ago when we had not one but three miscarriages in a row. I re-read it every now and then, such as when a dear friend got diagnosed with cancer, when my own husband got his diagnosis of PD, because I need to be reminded of the lessons. I'm sure there are other books out there like this and I do think it helpful to read them, when you have the time, of course.

By Emma On 2010.06.02 07:35
Guilt is a useless emotion but I have it. It was a gift from my mother :) We are all human and when we have negative feelings or attitudes or do something that causes pain to another person we feel guilty. Whenever I get angry with my husband, or feel a little resentment, or get fed up with repeating the same thing for the millionth time, or get impatient and snap at him I feel guilty. I feel guilty when I talk about him to other people because I feel like I'm betraying him (that's one reason that this board is such a great outlet). It's all part of the package. And like Al said, the patient's feel guilty too. Here's the interesting thing though, I don't feel as guilty about feeling guilty as I used to, if that makes sense. I have given myself permission to be human. That said, I will read "When Bad Things Happen to Good People". Thanks for that tip lurking!

By Emma On 2010.06.02 08:25
note to kk, for what it's worth I don't think you are in denial. I think you have a good attitude. A lot of us started out where you are now (really, we did). We weren't always negative old crones :) but things changed as the disease progressed and started taking a bigger toll on us and our loved one. I think you know that and are realistic about it. You have often said that you want to know it all, the good the bad and the ugly so that you will be prepared if and when those things happen to you and your husband. That's not denial, that's being realistic. You offer support to those of us who are dealing with different issues than you are and are not doing as well as you are. I think that you are in a good place and I hope you can stay there. We are all here for you too, no matter what and we appreciate your perspective and support.

By karolinakitty On 2010.06.02 20:01
Thank you Emma for your kind words .. i, too, hope i can be in this same place as things go on in this journey.

Lurking... i too read that book after a dear freind of mine died from Aids.... it is awesome !!!!!!!

By lilflower On 2010.06.27 16:19
Guilt yes we all feel it we wouldn't be normal if we didn't. But take joy in every day we have with our loved ones even the most difficult and trying ones. My hubby he has PD helps me because he has a positive attitude and a great sense of humor which really helps. Granted there are days when I wish we could be hiking through the woods somewhere or that I could turn back the clock and things could be the way they were but this is the way it is and we treasure every day together because life is just that one day at a time.

By parkinit On 2010.06.27 23:05
I do feel guilty, too, at times. He's facing possibly cancer on top of PD. Why does my spouse have so much on his plate and I'm healthy?

I prayed this and my answer was "to take care of him." I have been commissioned to do this for him.

My dad, who has inoperable cancer that is spreading, is at peace, he enjoys life still yet while he can. My mom said she wakes up and takes "one day at a time." I also hope their joy in the face of sadness and amazingl wisdom is something I can strive toward.


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