For those who care for someone with Parkinson's disease
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By lurkingforacure On 2014.12.10 20:19
Does anyone have their PWP follow them around? I have noticed lately that my husband follows me everywhere, all the time. It is unnerving as I am the kind of person that needs at least a little space to myself.

If I am cooking, he comes and sits at the bar. He doesn't say anything, just sits there and looks. I am busy cooking and can't really carry on a conversation unless I want to burn dinner, which I did the other night. Kids were not happy. I also burned breakfast this morning because he was sitting there watching me and every once in awhile would mumble something I could not hear over the hustle of cooking, so in trying to hear what he was saying so I wouldn't hurt his feelings, I burnt another meal.

If I am trying to work, usually at my computer, he will come sit in the chair next to my desk and again, say nothing, and just look at me. I can't carry on any kind of conversation then either, because I can't talk and type and read emails and respond to emails all at the same time:(

I have a laptop and have even moved to our dining table to work but he follows me over there too. It really is getting on my nerves because especially at the end of the day, I need some privacy and space!!!

I can't even sit on the sofa to look through the mail without him coming over to sit and watch me. I've offered to let him go through the mail, or even just open it, but he doesn't want to touch it, just wants to watch me sort it and deal with it.

It's not just me, either-he sits and watches our oldest do her homework and it drives her nuts because he doesn't say anything to her either, just watches. She has resorted to getting her books and papers together, going into her room, and closing the door:(

This is so frustrating. I don't know if he's bored or afraid or what. Is this PD or something else? Anyone deal with this?

By LOHENGR1N On 2014.12.10 20:41
Lurking, Just a guess but maybe He wants to spend time with you. Perhaps he is scared, I doubt it is boredom. You mentioned he mumbles at times so maybe this is his attempt to "be" with you and your daughter. Children can be tough explaining things like this to, however maybe every now and then she can include him? Like this question asks and this is what I think ....he doesn't have to answer but just include him every now and then. I know it is hard to deal with but with families many times a spouse will wish the other would spend time with them or take more interest in the children's lives and sometimes they come around. Your husband might be now coming aware of needing to do just that but he's trapped by P. D. Limited in communication abilities now and trying to be there for and with you the best he can. I could be wrong but by what you're describing that's what it seems like to me. Take care, best of luck and hang in there

By makrivah On 2014.12.10 21:23
We have a similar situation, but rather than sitting beside me, he stands behind me at the kitchen counter, at the bathroom sink, etc. if not behind me, then standing way too close as I dress, put on my coat, trying to go in or out a door. I don't make light of this and please no one take offense... It is EXACTLY like having a puppy who suffers from separation anxiety. He doesn't want anything, nor try to talk. He just wants to be near. On the one hand, his actions are sweet. On the other hand, it is incredibly obstructive and... Well, he invades my space. I do my best to work around this behavior. If I ask him to give me a little working room, he goes to his recliner and watches Law and Order SUV in a semi-stupor. And that breaks my heart. Suggestions anyone?

By bksquared On 2014.12.11 00:54
My husband follows me like a puppy. Spoke with his behavior psychologist. She helped set parameters . If I am cooking he is not to be in the kitchen until I tell him the meal is ready. She made him understand that it is not safe to be around me when there are hot pots or liquids. He could fall into me and we would both be injured. Twice when he was standing close behind me when I turned I nearly fell. I once punched him putting on my coat. She also told him he had to give me space. He was allowed to interrupt or ask for help 3 times a day and delay any other requests unless the house was on fire or an ambulance was needed. I keep count of what he has asked and when he gets to 3 I must be firm and remind him his daily allotment has been used. If he comes back continuously for more "help" he is asked if the house is on fire. If not write it drown and I will deal with it later. Then he just keeps trailing me with the list waiting for a break in my action. Part of his trailing me is to get attention and part is boredom. If he is engaged with updating ITunes or reading email I get some space or peace. His new project is to sort his cds, download the songs he wants to ITunes. Then we will give the cds to our public library..Seems to give him purpose and focus. After the cds, his project will be to sort our old photos to give to our children. He needs purposes and focus to decrease his hot breath on the back of my neck like a puppy.

By VioletV On 2014.12.11 11:08
Oh, this is so familiar.

I know that my husband is aware of how much he asks me to do -- because he tells me so, and is hard on himself about it. Then he starts to do something himself, and can't really do it, so I drop what I'm doing to help him. Hardest for me? when I offer to help him and he says no, he will do something (put on a jacket, get out of the car, pick up a fallen item) and then 5 seconds later asks me to help him. Sigh.But there is just so much he can't do -- I can't imagine limiting him to 3 requests per day.

He needs my help to put on his shoes and socks (he often dresses himself these days!!) to stand up from a chair, to unscrew the top of a water bottle to refill it, to bring in the firewood, to add a log to the fire, to put the dog on a tether if a workman is in the house, to take the dog off the tether, to make coffee for the people building our new garage (in 10-degree weather the other day!) and take it out to them, to scoop the dog poop, to re-fold the newspaper when it gets all mussed up, to plug in the cell phone headphone plug so he can call an old friend, to google something he wants to know, to find a CD he wants to listen to, to pay the bills, to organize his pill boxes, to make doctor's appointments and track them, to make tea for him, to help him shower, to wash his hair, to drive him anywhere he needs to go, to make travel arrangements, etc etc. And I shouldn't complain, since we have help in the house, so that I don't have to do all the cooking and cleaning.

Parkinson's is just HARD.

The standing too close, I have decided, is because of an unawareness of the location of his body in space. If he asks me to look at a red spot on his face, he will continue to look in the mirror, turned away from me, and have to be told to turn so that I can see the thing he wants me to see. Similarly, he truly can't tell when he is standing too close--he doesn't "read" the space. I have to sometimes ask him to step back so that I have space to move.

And yes, he follows me. If I help him settle into the family room (where we plan to have dinner in front of the fire) and I go into the kitchen to finish preparing dinner and bring in on a tray, he comes into the kitchen after me, and then I have to carry in dinner, help him walk back into the family room, get him settled into his chair again, etc. etc.

I just try to remind myself of the indignity he must feel in being unable to even clean himself up in the bathroom, of how it must feel to him when he asks "is there anything I can do to help?" and there isn't really. I end up making small jobs and we both try not to notice the difference. The other day I was sorting a tangle of computer wires, old charging cables etc and he offered to help. I gave him one thing to untangle, which he did, in the time in which I did a dozen or so.

I think we just do the best we can, and we caregivers have to, as you've said, create (as best we can) the conditions we need in order to keep doing what we must/and want to do.

VV


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