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

Topic Someone kick me, please!!!! Go to previous topic Go to next topic Go to higher level

By Cindy Bystricky On 2009.01.07 21:51
I know you have surely seen the ad on tv for the oldies but goodies CD set. Well, it made my husband SOOOO happy just to see the commecial ads I thought it would be great to order it for him. WHY???? didn't I realize it was better to let him see the ad than to deal with 10 CD's and a CDplayer??????? I am about to go crazy! He cannot even understand the sequence of removing the CD from the case and putting it into the player, he cannot even understand how to remove it from the case!!!! I am sorry if I sound like a BI--H!!! But I am at the point of no return!!!! I have a man (69) who doesn't know how to open a CD case and a 102 year old MIL who knows less!!!! God , please forgive me but I am going crazy and I cannot do anything about it!!! Thank you all for allowing me to tell you this....................

By annwood On 2009.01.07 22:58
Hi, Cindy
When we get so overwhelmed it doesn't take much to set us off. I totally understand your frustration. Don't you ever wonder when someone will do something for you? I remember the feeling of being trapped and feeling like everyone aorund you was crazy - Alice in Wonderland.

I have those CD's and they are great. They have the potential for keeping him occupied for hours which is a good thing. The cases are difficult to maneuver even without PD. My recommendation is to take all of them out of the cases and not worry about the cases anymore. Put the MIL to bed, pour a glass of wine and sit with your husband and enjoy some music.

By susger8 On 2009.01.08 13:22
I know what you mean! My dad is an engineer, but he can no longer work a TV remote or turn on a radio. He presses all the wrong buttons, decides "It's broken" and takes it apart, usually destroying something perfectly good. It kills me to see him like this.

But if I mention a problem with my car, he can be totally lucid and will run down a list of diagnoses like nothing is wrong with him.

It's a mysterious and very frustrating disease.

By annwood On 2009.01.08 17:40
Yes, we finally had to hide all of the remotes from my husband and for some reason he wanted to sit and listen to Spanish speaking television all day - he knew no Spanish! I think there was something about the cadence of the language that soothed him. When the mind gets disorganized it seems to do strange things. I believe that the lucid times were the strangest. He would suddenly be ok for a day and then he was off to another world the next day. It is a tragic disease.

By Cindy Bystricky On 2009.01.09 00:03
Thanks , ya'll. Again you have made me feel so good by relaying your stories. I can say, "Yes, that's how it is!!!" You understand completely. I have decided to take the CD's out of the cases like you suggested. I do enjoy the music just as much as my husband. We have to just find a way to make it easier for him and I will. God Bless!

By Ilovemydog On 2009.01.09 09:15
Annwood, it is funny that you say your hub like to listen to spanish channels.
I have a monitor in my Dad's room and I woke up last night to the sound of a Spanish talk show.

By susger8 On 2009.01.09 09:52
That's funny about the Spanish TV. One time my Dad called me because his bedroom TV was "broken" and everything was in Spanish. He had been pressing random buttons, got the setup menu and accidentally changed the language to Spanish. Unfortunately it didn't seem to soothe him, he got aggravated because he couldn't figure out how to get it back to English!

At least he didn't break anything that time and I could fix the problem. I never would have thought I would become the household technology expert.

By deflo On 2009.01.09 10:53
It seems we all have the same problem with remotes and gadgets. My husband can change the channels and work the volume button(unfortunately because he loves it on extra loud), but anything else is a challange. Even the phone is difficult for him.

By deflo On 2009.01.09 10:55
I forgot to mention that he also loves music and sings along with no problem. He has a beautiful voice, still. When his voice therapist is here he manages to have a booming beautiful voice, as soon as she leaves, he goes back to speaking softly. It infuriates me because I know he can do it but I sometimes feel he can't be bothered since it's only me listening. ARRRGGG!!

By sachet On 2009.01.10 01:55
deflo my husband can mess up the remote more times in a day and also for that unknown reason ends on the Spanish channels for hours.
When he mixes the remote he will call my daughter who lives a mile away and she come right over and fixes it---but has trouble makes phone calls and always uses his cell phone--can't use the auto dial gets to confussed but he can call Cindy when he needs his TV fixed--

By rajenriver On 2009.01.10 10:54
We got a Jitterbug cellphone for my FIL when he went into the nursing home. It is about the most simple cell phone to follow and has big buttons. Cheaper than a landline, too. It was extremely important to him to be able to have his own phone to be able to call long distance if needed. Even with how simple it is, my FIL still struggles. He thinks it needs more AA batteries even though every time we visit, we explain that it has its own battery and recharger.

He has some obsession with batteries in general. He is always taking them out of his remote or his clock because he doesn't think that they are working. He is one of 8 children and was always the smart one and the only one that went to college. His dementia is keeping him from being able to operate the electronics or to tell time so because he is "smart" he thinks that they are just not working. So we get him more batteries.


By annwood On 2009.01.10 12:14
I am seeing some common threads - batteries and Spanish. I still have my husbands collection of batteries - we have enogh for several years.

By caregivermary On 2009.01.10 15:00
OMG, same thing here. Batteries galore and the Spanish TV drives me nuts. So happy to hear this-and to think I actually thought I was going crazy! The little things that didn't make sense now I understand. Thanks!!!

By LOHENGR1N On 2009.01.10 16:57
Ok let Me weigh in here from a Parkinson's patient side. Remote controls; Unless they start making them the size of a laptop computer, We're going to have troubles with them! The buttons are so close together..........I know you care givers put up with a lot but probably your loved ones aren't doing this stuff on purpose. If You're frustrated think about how frustrated We are, for crying out loud we can't even work a remote properly anymore. Imagine how we may feel finding ourselves stuck with Spanish coming over the volume? They could be stopping there figuring they've done enough damage for the time being. It might not be pushing random buttons. We don't sit around all day thinking up things to do just for fun. We reach for things and come up short, or over reach and knock it over spilling it. We push a button and because of tremor either make multiple pushes or hit the button beside, above or below. With complete concentration we can call a number (like the one that will summon help with the remote and not result in too much scolding)
As for voice....volume. Don't take this personal! I assure You it's not. Voice therapy, when the therapist is there, He is projecting all He has into it. He can't do this all day long. Imagine how hard and tiring that would be. I'm sure if you brought this up to the therapist they would tell you it's normal.
Batteries; ? Don't know but can hazard a guess, We're from the pre-everything has a re-charger built into it world. So we have to have a good supply of batteries in case they go dead right when we need then?
I hope I didn't upset anyone with this post. I'm just trying to say we are frustrated just like you are with our inability to now do seemingly simple tasks without messing up. We realize we can't do them anymore, we know we're messing up, we can't help it most times. I myself as I type this I have to look at each button on the keyboard and still hit the wrong one as my fingers have a mind of their own (the smooth movement from brain to arm to hand is interrupted by poverty of movement or tremor, take your pick.). So now I ask what are we supposed to do? It seems in this disease we're damned if we do try to be independent and damned if we don't. I have no answer. Think of a bad day, I've spilled the morning coffee, messed up the remote and tv. can't seem to make a phone call, stepped on the cat's tail, fallen trying to get to the bathroom. Answered the phone, my voice soft and slurred (med's weren't working), been accused by some ignorant tele-marketer of being drunk. Been scolded about my trying to walk around by myself because you know it makes you fall! You get the Tv straightened out and on a show I like to watch, get me seated and bring lunch in on a lap tray turn to go get yours and my leg decides to jerk tipping over my lunch! You're frazzled, I'm frazzled! What's the answer? I don't know. Communication? Count to ten, lean in because my voice is soft and I am not able to pump up the volume right now. Soften you voice and agree it's been a rough day so far but we're both going to get through it together. Take care, best of luck and hang in there. And don't get too mad at Me I'm trying the best I can too.

By caregivermary On 2009.01.10 17:33

Thanks for filling in the rest of the story. I know you are right. I was surprised to hear others were dealing with the battery and spanish tv too.

By annwood On 2009.01.10 17:54
Lohengrin - you are so right. It has to be so very frustrating for the patient. That was what I was trying to say when discussing obstinance. I really don't believe any of you are just trying to make life miserable. One of the ways I got through the days with my husband was by telling myself that he really would not have wanted to be that way. I will tell you that it is hard because it really seems as if the fates are against you as a caregiver and your husband has been sent to carry out their demands. I would often have to remind myself that I could actually get away from it but he couldn't. It is such a nasty disease and it involves many more than the patient. I hope that you continue to stay with us and to keep us in perspective.

By lynn On 2009.01.10 20:48
I can't believe what some have said about batteries. My husband purchased a digital camera a year ago. He has yet to take a picture but he has bought about 4 large packs of batteries. I thought this was odd. Now I know he has the "battery fetish"

By Cindy Bystricky On 2009.01.11 12:30
Boy, I got something started, huh???? You are all correct!!!! Our PD'ers DON'T mean to do the things they do. As my husband tells me,"I'm doing my best." It is unfortunate that his best isn't what it used to be. NO fault of his or mine, just the way it is. He worked for 35 years as a office machine tech and manager. All the way from mechanical typewriters and adding machines to the computer age. He is a very intelligent man who has gone farther than anyone in his family. But the one thing they all have in common(including his 102 yr. old mom) is the desire to do their best, always!!!!! So when he has so much trouble with simple things like CD's,remotes, phones, shoes, clothes, etc,etc,etc, I KNOW he is doing his best. BUT!!!!! We are too. As caregivers, we are not condeming their actions we are just so frustrated with this situation! How on earth can I make things better for us both?????? God bless and good luck to all of us in this task!!!!!!

By Ilovemydog On 2009.01.12 06:24
Batteries at my house also!! My dad will get someone to take him to the wholesale club. There are enough batteries in his room for the next 5 years.

By anidaholady On 2009.01.12 06:57
Lohengrin - Thanks for reminding me of the things I am going to need to hear. I didn't think you were trying to offend anyone, just to remind us that your frustration is greater than mine and you can't take a break from it. My husband is doing pretty well so far and I am thankful for that, and trying to prepare myself for the sake of both of us. (An impossibility?) Your words are a great reminder.

By susger8 On 2009.01.12 08:06
Logengrin, you are entirely, right and there's no question that our age of technology is hard on those with iffy motor dexterity! Have you seen the remotes that are available with huge buttons? I bought my dad one like this for Christmas -- I got it at CVS. He still gets confused about which button does what, but at least the buttons are big enough that he hits the one he aims for.

Yes, my dad is always taking batteries out of things and when something isn't working I check to see if the batteries are missing or reversed.

By Ilovemydog On 2009.01.12 11:11
Susgar8, I bought this remote for my Dad for his room. Big Mistake, for our household anyway !! If the batteries weren't out, then he would take the original remote to the tv....not the remote that comes with our cable......and change stations. He doesn't understand that the remote that comes with the tv will never be used, I had to hide it. When the batteries were in, he would undo the whole remote and take the insides out. Oh and did I specify that he takes electronics apart? No matter what the cost?
Right now he has a box of remotes , headphones and radios that he has ruined.

By susger8 On 2009.01.12 11:23
Ilovemydog, your dad and mine seem to be identical twins. My dad takes apart radios, flashlights, remotes, meters, you name it. He doesn't realize that he can't put them together again any more, the way he used to. We've ended up having to put all tools and sharp items up on a high shelf out of his reach.

More than the cost of replacing things, what really upsets me is that he has always been a mechanical genius who could build or repair anything. It's just so sad to see him like this.

By Ilovemydog On 2009.01.13 16:20
Susger8, early last year my dad went behind my back at order a set of Bose headphones over the phone. They were $299 plus tax, plus S & H.
They arrived on a Monday, they were destroyed by Tuesday morning. I called Bose, nothing they could do for me except put a red flag next to his account.
When I asked him why he did this, he answer......."I don't know, I don't remember"

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you