For those who care for someone with Parkinson's disease
[Forum] [Home] [Help] [Search] [Register] [Login] [Books] [Commentary] [Contact] [Donate]
You are not logged in


Topic Embarassing Moments anyone else? Go to previous topic Go to next topic Go to higher level

By Trusting On 2015.11.11 21:11
Okay, it's safe here, right? I'm feeling like a horrible wife and caregiver and wonder how you handle this problem. My husband can't drive, he can't remember how to dial his own phone, has trouble with the remote, is beginning to have trouble eating without food dropping, and is having trouble hitting the toilet most of the time.

I am handling all of these problems. I realize he is lonely and wants to be normal again, but he wants to go visit people, have dinner with friends, have me dial the phone for him (did I mention he can hardly hear) and more.

I become embarrassed for him when he tries to talk to people and can't finish a sentence or goes into a long stare while trying to talk to them. We have had wonderful friends who try hard to include us but I think some of these things are beginning to bother them. It is awkward for everyone. If we go to someones home I worry that he will leave urine on their floor (he won't wear the pads), if he tries to call someone he can't hear them. Sometimes (often) the things he says don't make any sense). They usually call me to see if he needed anything. I don't want to see him humiliate himself in front of people or in restaurants. I'm not sure I'm making sense but I don't know how the rest of you handle this. People know he's sick but at what point to we stop trying to socialize. I think we are getting close but ........ Help!

By VioletV On 2015.11.11 21:33
Oh, Trusting,
Believe you me, I know what you are talking about. Indeed you are NOT a horrible wife or caregiver. It's realistic to see that the PWP is having these difficulties. To pretend that they aren't there is just delusion. Still, it is hard to know what to do. I think that the embarrassment, however, is ours, since the chances are that the PWP doesn't realize that he is failing in so many of the social graces.

I do think, too, that we caregivers have a right/responsibility to say - "I will take you but I don't want to worry about... so I need you to ...." And he he disagrees, then you have to say. Well, I 'm just not comfortable with going to Joe and Mary's unless you can wear a pad. It saves me from worrying."

We don't socialize much at all. Periodically my PWP husband will call old friends back in his home country, and they will be kind and warm, but there isn't much substance to the conversation. I'm beginning to think that I will prep people before he calls them...his memory is so weak that he won't remember from time to time what he has said/done.

It gets very lonely for us, the caregivers, when our social lives fade away. I thank goodness for text/chat with my sisters and other family members. This group, which I visit daily, feeds me emotionally more than almost anything else in my life.

Thanks to you, and all of the forum people for being here.

By exhausted wife On 2015.11.12 05:30
[deleted]

By carman96 On 2015.11.12 09:53
Trusting, I have the same problems with my husband. I'm not so much embarrassed as it's just a hassle for me. He wants to call people and then says non sensible things. Going places is so difficult. I know its good for him to get out, but have the same problems you do.
He has Dementia, so even if he has a good time, he will forget it the next day. But getting him in and out of the car, having him in the car playing with the Windows, door locks, heater, radio. One time he even shifted my automatic into neutral! Worrying about bathrooms, if he's going to pee on someone's couch, or spill his drink, if he's going to fall down, etc. I am such a nervous wreck by the time we get home.
So so sad.

By umajane On 2015.11.12 12:19
I so agree with all the posts. It is tough going anywhere at all but I try every so often. Restaurants are out of the question now. Visiting friends is tough and I have to be sure all the food is something he can handle.. I am a wreck when we do go out but feel it's necessary for my husband even though he is happiest at home where everything is set up for him.. We went to the movies last week and he immediately fell asleep there. So since he is happy at home and I like to go out occasionally I have been making lunch dates with friends or even go out for dinner and have my caregiver here..
Sometimes I get take-out from our favorite places and just serve it at home where it is easier.
It's amazing how we took our life before PD for granted...I dream of one more day of normalcy but that would never be enough. Carman, my husband fiddles with the car too. He shifted my car out of gear recently..I was a wreck till I figured out what happened..


© 2003-2016 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you