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By lurkingforacure On 2013.09.24 23:36
Tonight my husband came out of his bedroom in just his tidy whities, just walking around in front of our kids (including daughter who was mortified) one knew what to say. It was very, very ackward.

He seemed to know what he was doing was improper, but didn't seem to care. And that made me mad.

He said he was looking for his other underwear, the boxers....which, if there are any clean ones, are in his dresser drawer. He shuffled around for a bit and then went back into the bedroom. I looked over at our kids and they were dumbfounded, mouths open, staring after him.

I didn't even know what to say to them. What do you say?

The other thing that seems to be increasing lately is, he seems really obsessed with food, more so than usual. He will ask me what I want to eat, when I have just eaten, and he is already thinking about eating again. It makes me nuts. Is this an issue anyone has dealt with?

If I come home, he now comes out of the house before I have even stopped the car, which he never used to do. It's not to see me, it's to look in the car to see if I have been to the store. If I have any grocery bags, he busts into them before I can even get them unpacked. I have been hiding food for over a year now but he has found all of the hiding places. Our kids are beyond tired of things being eaten before they even have a chance to get some of whatever it was. If I find one more block of cheese that he has simply taken a big bite out of so there are teeth marks in it, and then stuck it back in the refrigerator with no wrapping so it dries out, I am going to scream. And who likes to open the salsa or sour cream to find a half-eaten tortilla chip stuck in there? It's so frustrating.

He is also getting annoyed with the kids more often and more easily. Last night everyone was working on homework and he came in and announced that everyone needed to go to bed because he wanted to go to bed. He always goes to bed the earliest because he wakes up many times during the night and needs to get sleep when he can....but that doesn't mean everyone else has to have that schedule. He got mad when I told him we couldn't go to sleep because everyone had too much homework, and my son got mad at him. I don't know how to handle this situation either.

I read an article some time ago about a family whose dad was ill and the mom said he was detached from his children and had little to do with them. I used to think that wouldn't happen to us, but I'm scared that it is. My husband hasn't gone to a single one of any of our kid's activities in years and barely has a conversation with them anymore, he treats me like a translator between him and whichever child he is talking to. It's exhausting for me because I can't be translating/explaining everything our kids say to him, which he doesn't understand because he knows next to nothing about their lives. It's almost as if when he got dx'd, it became an excuse to not have to participate in their lives at all. He has missed so much that he could have, but chose not to, do with them for all these years.

And speaking of kids, he also wants me to take all of the calls from his mom. He is perfectly capable of doing this, and she's a lovely lady, and calls often to ask about him. She called today. I just recently started telling him no, that I was not going to take her call or call her back for him, because it is his mother, and she's calling to talk to him. I don't ask him to return my relatives' calls, and I think it too much for him to ask me to do this on top of everything else I have to do. Plus, he can do this, he just doesn't want to. Ugh.

I guess I'm just really, really tired. And I feel so sad for my kids. I wonder if they will have any good memories of their childhoods.

By Threadhead On 2013.09.25 08:11

By Reflection On 2013.09.25 09:17
Amen to Threadhead's words of wisdom.
My husband was diagnosed with PD when the kids were in 3rd grade. They are now through college. For ~ 10 of those years, he was on the dopamine agonist Requip.
The behaviors you are reporting are all too familiar. Now he's been off Requip for a few years, because I wrote his neurologist a series of three letters detailing his behaviors (my husband LOVED his meds, tried to prevent me from having contact with his neurologist lest the meds be reduced.) He is way more "himself."
I don't want to paint an unrealistically rosy picture. PD kills neurons. Cognitive impairment, dementia are very common, especially after many years. BUT - the worst that my family went through, by far, was the medication side effect, NOT the "lost neurons" issues.
While you are in the middle of it, it's so hard to understand what's the PD, what's the medication side effects - and, you think, the medications are necessary, so you just have to deal with the side effects.
Not so.
I've made the analogy before - too much insulin doesn't make a diabetic even better - it makes them worse. The right amount of meds helps those with PD, too much, or the wrong kinds (for us, dopamine agonists) is horribly, unnecessarily destructive.
In my family, the "lost" years were damaging to my kids, destroyed their relation with their father. It is worth going through a lot of pain in the form of resistance from your husband, challenges of getting through to his neurologist, etc. to try to get your concerns about his behavior addressed. I hope your family fares better than mine has. After years of hell, we're emerging, but permanently scarred.

By pickles On 2013.09.26 01:37
I don't have much to add but thank you for sharing. We are coming off from Requip for other reasons but it is helpful to know that it was a medication that was loved by your PWP. Thanks for sharing.

By pickles On 2013.09.26 01:47
Oh forgot to mention my original thought!

lurkingforacure I would suggest "sportscasting" the inappropriate events. It is a popular technique in mindful parenting and very respectful way of communicating something that is going on that your person may not have considered. Basically you are a strictly factual commentator of what is unfolding (you are in your underwear in the living room) or repeat whatever inappropriate thing is said back to the person so they can hear it again and be given a chance to revise or comment further. Sometimes it is enough to encourage a change without actually telling them what to do. It allows them to think about it again and respond. Sometimes people don't realize the impact their actions have on others despite their seeming coherence in other issues. Sportscasting or acting like a commentator allows them to see what YOU are seeing instead of being in their own heads all the time but it is less confrontational than correction.

By LOHENGR1N On 2013.09.26 16:06
lurking, I'm not sure what's going on there. You've mentioned for years about your husband dis-connecting from the family from the get go. So I'm not sure if it is being caused by medication or the disease. (If the neurons involved in this behavior are under stimulated or over stimulated).

I'm not sure that "sportscasting" is the answer to anything. We're not raising the patient. If this is because of the disease and the start of executive function or a social function decline this behavior might encourage the children to join in becoming a way to poke fun of Dad. One has to remember at the start of mental decline people start to un-learn. Teaching techniques used for children don't work because we learn in one way but now that way is defective and doesn't function anymore. Which is why when seeking help from Doctors We must seek out those who are learned in working with Parkinson's Disease and with cognitive problems if not Parkinson's Disease then those with a working knowledge of Dementia.

By jcoff012 On 2013.09.26 17:57
Al, as always, good points. It never occurred to me that people are un-learning, not simply forgetting...and, after raising four children and being part of two grandchildrens' upbringing, you are correct...part of a child's life is making fun of things they don't understand...sad for anyone and everyone involved in this case...I think I need to do more research on this, as you know, we prefer to search out answers ahead of time.

By pickles On 2013.09.26 23:58
LOHENGR1N perhaps your are right that sportscasting may not be the best option in this case.

Please know that I do not actually sound like a sportscaster or make any funny tone whatsoever. My tone is usually very flat. It is just called "sportscasting" so that the person using the technique can remember to call out the plays instead of correcting a behavior.

I actually use this technique respectfully with adults and children and it usually works out quite well. I shudder to think that someone would make fun of anyone in that situation. It is nothing comical.

Forgive me for not making that part clear and distracting from the original thread topic. I felt the need to clarify in the event someone came along later and thought it was a suggestion to make fun of anyone.

By parkinit On 2013.09.28 22:15
This has been for us a symptom of too many meds. Whatever they are- dopamine agonists or simply sinemet. My souse rambles, sometimes forgets points he was trying to make or gets horribly inappropriate (thank goodness this hasn't happened often).

The longer he has had this disease the more unpredictable the meds are. Taking the same dosage and sometimes he appears extremely underdosed and then a few hours later may be extremely overdosed.

By Mom45 On 2013.10.09 12:32
Lurking, this only my second post but I wanted to tell you about my husband's issues with food. I wish he did come out to the car when I come home from the store-- I could use the help.He does ;however, want to eat whatever you are snacking on. He will never eat an Apple but if I have one he will eat at least one half because I will slice it into pieces. This is really not a new trait just more exaggerated from his younger days. But still seems slightly odd. He is only on carbidop/levoxdopa , mirtazapine that was given for depression and appetite, and Arricept . Our son who lives with us has noticed this behavior. I don't know if this is a regressive type symptom or just more pronounced because he doesn't"t want to get up and move due tday?r
arthritis and stiffness from PD. I have a question. Do all PD patients c/o dizziness every day. Not room Spinning but inside his head. He uses a cane to balance on uneven ground., not in house. Thank you.

By LOHENGR1N On 2013.10.09 15:33
Mom45, I don't think it is a regressive behavior I think it is just more noticeable because now you and your son are watching him more closely, as you said he did it before, so it is more likely you just became used to it but now your son pointed it out. No not all Parkinson's Disease complain of dizziness every day.

By parkinit On 2013.10.13 22:40
Mom45 -
My spouse frequently complains of dizziness, but not every day.

By Cheryl525 On 2013.10.16 00:01
I could have written this post myself. My husband has yet to walk through the house in his underwear but he goes for day on end without putting on street clothes.

The food issue drives me nuts. I get so tired of text telling me to buy junk food. I hit delete because he needs to eat healthy. If I do buy a snack cake because I want one I know I had better eat it before I get in to the house. I did break his habit of eating everything a couple weeks ago when I was headed out the door to work and I reached in the package to get an Oreo and he had eaten the whole package the day before. All I wanted was ONE Oreo and he ate the last one. I was so mad I left without saying a word, When I got home from work we had a talk and he will never eat the last Oreo again. :)
I realized even before he was diagnosed that I was a single parent. I go and do everything I would do if he was with me. If he chooses not to be a part of our family I go on without him. I have said to him that this is our life and we just have to accept what it is and move on. I had a dear friend lose their spouse to cancer this summer and another to a heart attack within a month of each other not long ago. Despite everything we have in our lives we still have it much better than my friends and I remind my spouse of that often.

As far as the bed thing, my husband tried that with our 19 year old. She politely told him he just as well get over it and go to bed. 9:30 was not her bedtime. I have learned there is solace in staying up after he goes to bed. I have even learned to use the remote since I get to touch it now.

You are not alone in your frustration. Hang in there and have the Oreo talk.

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