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Topic feel so guilty Go to previous topic Go to next topic Go to higher level

By phoenix On 2013.07.12 23:03
I get two blocks of four hours off every week, one paid for by the government of Ontario (thank you) and one paid for by me. On Thursday as I was driving home after my time off (which was mostly spent at WalMart shopping for briefs and disinfectant and other fun things) for the first time I really, really didn't want to go home. The man I love is hardly ever here any more. The person I live with now doesn't know me most of the time, and when he does know me, he thinks I am trying to poison him, or make fun of him, or that I am taking cocaine or having an affair or whatever. He has no idea what I do for him all day long. I feel so guilty for not wanting to do this any more, but will keep going because there is no choice. Sorry, just needed to vent to someone who will understand.

By Threadhead On 2013.07.13 06:48
[deleted]

By lilflower On 2013.07.13 22:26
Sometimes I have a quiet time in the morning while my Husband is still a sleep , that's when I enjoy my cup or two of coffee I read a daily devotion and a story from the Bible. Yes there are times when I'd like to jump in the truck and go to the beach for the day or even go shopping and out to lunch with my girlfriend , but then I hear the snoring down at the end of the hall and his conversations with his dreams and when he wakes up he tells me he was walking with me on the beach and running through the water. Guilt yes I feel guilt but more than that I feel a great love for this man I've been with for over 31 years. Yes I am tired and stressed but he still makes me smile when I'm sad and makes me feel loved everyday. Saying I love you and looking into each others eyes understanding that you are both suffering from the disease makes each day easier. Not that any of this is easy but just knowing we're fighting together to get through each day makes the fight worth it. Having this forum has also been a very nice addition to my life, to know we are not alone there are many of us going through the same things.

By lurkingforacure On 2013.07.13 23:38
Boy can I relate. Sometimes I look at my husband and wonder what is happening inside of his head, physically, to ruin his life in so many ways. What does his brain look like now, and how did it look before dx? I am amazed at how PD can ravage the smartest and strongest of men, and reduce them to crawling on the floor at night to reach the loo. Devastation on every level. It is so very sad.

I have also had the thought of just leaving, I have no idea where I would go or how long I could be gone, but then I look at our kids and realize they are stuck, too, and their childhood is being stolen from them on top of everything else. Who would feed them, and take care of them? Who would tell them that even as our world is falling in around us, we still love each other and will take care of one another? So hard, and so unfair for them.

By phoenix On 2013.07.14 22:37
Threadhead, this is why I come here. Your husband sounds very wise. I am going to work at not feeling guilty for my thoughts. You are so right, what I do and say is what impacts others, but my thoughts are my own.

Lilflower, cherish the time that you can say I love you. My Hubby so rarely knows who I am any more, very sad. today he said that I have ruined his life, and he hasn't liked me for a very long time. I know it's dementia talking, but still hard to take.

Anyway, thanks to all for listening. Feel so sad and robbed by this disease.

By chroop67 On 2013.07.16 11:13
Ok I get the wanting to run and yes good for you for coming home but what about admitting the reality that our loved ones need more care than we can offer. Its OK to admit that and its OK to look into alternative care, ie. long term care. As I have said before, my husband and I have discussed the future. We have agreed that one life stolen is one life too many but we will not let disease steal both. We will live life well for eachother and if one of us needs to move into care then that is already agreed upon.
I cared for my PD mom for as long as I could. When it became obvious that despite the help from homecare, her care was going to become 24/7 for me we looked into long term care. She has been there for 2 and a 1/2 and although I would like a different life for her, this is now our reality. We are only human and admitting our limitations is just a part of the path.

By beadobee On 2013.07.30 12:33
After reading most of your stories, I feel almost worse. Most of you are such troopers! Their is NO way I could clean a diaper and even consider sex ever again. Just can't go there. We've been married for only 10 years and 6 of them with PD. He really does pretty well on most fronts, but still it's hard. I have to constantly check on every thing he says he's doing or going to do, because he almost never remembers to lock doors, turn appliances off, take pills..the list goes on and on. He looses everything, but blames me. I also see him "using" his PD when he just doesn't want to do some things. I don't have the 35 years of wonderful memories to hold onto. I'm very healthy and 61 and feel like I've been robbed. I'm just tired of being a care taker, but I have no choice. Venting helps, and you sweet hearts out there help me cope. Thank God for red wine!!

By parkinit On 2013.07.31 08:29
Yes, I enjoy my time away, which makes coming home easier. If I do something enjoyable mixed in with the grocery store run and running other errands for my husband, it seems coming home is easier as I'm in a better frame of mind. I'm still not thinking about "PD care" and all that entails, but have other, more pleasant thoughts to dwell on. This helps me.

I, too, don't have many years invested in my spouse (eight years married), and I have wondered if this is the element that makes it "easier" for a spouse/caregiver - having that lifetime investment and some experiences/memories before the PD. I married my spouse knowing he had PD.

Being blamed for losing things, boy does that ring a bell, too. My thoughts are that when a spouse is "high" on their meds, they don't have good cognitive functions - so much that they don't remember much of what happens during this time. My spouse used to do this A LOT and used to blame me for losing things or moving things around on his desk. Now that we have reduced his meds and he rarely has these "PD highs," he is better in this area.

Thanks for sharing, all. It certainly does help to know we are in this boat together - paddling against the flow of the river.

By carman96 On 2013.07.31 10:44
Sometimes I feel like running away from home! I would never do it though. Next month is our 28th wedding anniversary. It's so bittersweet to think of all we did in the past. Sometimes I think I'm sure glad we got to do that. Other times I'm just so mad that we don't get to anymore.
He keeps asking everyone to take him fishing in his boat. We are all afraid he will fall overboard or something. Plus the major hassle of getting him in and out of the boat without him falling.
I feel bad because I hardly take him anywhere except doctors or physical therapy. It's difficult getting him in and out of the car and I'm afraid he might fall. Then he gets really tired and complains about his back hurting.
So I do feel guilty about that. All we can do is try our best to cope. Sometimes our best isn't good enough. Then we cry rant and rave....say life's not fair and I want to run away!
Then the next day we get up and do it all again. And hope today is a better day. And lots of time it is!


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