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Topic Haven't posted in a while, need to just talk Go to previous topic Go to next topic Go to higher level

By Cindy Bystricky On 2009.06.13 00:49
I am so tired. I see things in my husband that make me think he is doing great for a PD'er in his 15th year!!!! Then he is so pitiful, not knowing the simplest things. Can't fasten a seat belt, can't use the remote or microwave, can't put his shoes on, doesn't know what day it is, absolutely can't understand any sort of directions or instructions. He looks at me like I am speaking a foreign language. The dementia is bad one day and worse the next.When we go to the neurologist he thinks my husband is doing so well! He just brags how his "symptoms" are being controlled so well by the meds! ha! Yep, he is right, I guess. Symptoms, that is the key word. What about the rest of it??? I can still see that he is "there", the man I have known for 36+ years. He is still physically well. No tremor, walking without an aid, eating without swallowing problems. I keep telling myself he is doing "great", but inside I know he is not. I sound so contradictory, I know. But that is what this disease is all about!!! One day is fine, one hour is fine, then it all falls apart!!! I am so worn out with the unpredictability of it all!!! I have not posted because I cannot state any specific problems that I need you all to respond to. I don't know what to ask. All I know is this is wearing me out. I don't have a compulsive gambler, sex maniac, or any of the things so many have listed in this forum. I just feel like I am dealing with a demon that will not expose his true colors! One minute we can feel human and the next I think , where did that come from??? Thanks , guys for listening......I just don't know what to say, except "Help".

By lbellomy On 2009.06.13 08:40
Cindy, I can relate to many of the symptoms you mentioned. My husband was diagnosed with PD in 2002 so I have not been at this near as long as you. My husband does have the mobility problems though and is in a wheelchair much of the time. I just wanted to say that I understand - can't use the phone or remote, fasten the seat belt, etc. He used to fix things around the house and work on our cars. Then he started to "fix" things that I would have to end up throwing away. Go to this link and see if you can relate. This is a forum you can read and do not have to join unless you want to contribute or ask questions.
http://www.lbda.org/forum/index.php
Lorraine

By annwood On 2009.06.13 10:23
Cindy - it is good to hear from you but I am so sorry you are having problems. All of the things you described unfortunately go with PD. It is so hard to watch this decline and be powerless to do anything about it.

The physician things just drives me nuts!!! I know what you are going through. They just have those little boxes that they need to check and once they tally them they say "he is doing well". It seems that they are unable to look at the entire picture and God forbid they ask you how he is doing. Perhaps that is how the physicians cope with dealing with PD day in and day out. It probably doesn't matter because they are currently unable to do anything aabout the mental decline.

Accepting the fact that your PD loved one is no longer there for you and that many of the things you shared or expected are gone is to me the most difficult aspect of this disease. We are so geared towards fixing everything and this is just something we can't fix. It helped me when I finally accepted this and understood that I was "taking care" of my husband as if he were a child. Learning to deal with the anger, fatigue and frustration was more difficult - I never did get a good handle on that.

Remember that you don't have to have a question to be here on the board. Someimes just venting what you are feeling is beneficial. I send you prayers.

By dkleinert On 2009.06.13 11:43
Oh, Cindy - you are where I am at. My husband has been diagnosed for almost 5 years now, and I am at my witts end!!!! I so feel your pain. I am sick of his Neurologist thinking he is doing so well.......my husband is a great pretender - he performs when we are there. But I (and you) live with the reality.....I think the child-like behavior, the dementia, all of it is worse than the physical parts. If Joe was confined to bed because he could not walk or needed a feeding tube or whatever - it would be easier to excuse the problems, but my husband - like yours - can walk, has slight tremors however, but it does not stop him for doing most things - even can hammer a nail straight on - won't drive a car (thankfully), but does not have trouble eating at all either. You can feel free to email me and talk about any frustrations you are experiencing - I am living in the same hell. At this moment my husband is angry and pouting in the bedroom because I was upset that he charged medications on our joint account checking account when the money he spent will keep me from paying a bill I need to pay.....he acts like a child over the fact that he did it and I am upset......

By bhowson On 2009.06.13 22:55
I can relate to the physician thing...not really going deeply into what you are experiencing...forbid that they should spend the time to actually answer questions. My husband, who's been diagnosed with PD for a year, but has had symptoms much longer that we thought was from his hydracephalous, was making violent gestures in his sleep, like boxing one night, and another night actually grabbed my arm in a vise-like grasp...I had to pry off his fingers...and scooted as far away from him as possible. I don't know if anyone else has experienced this, but it scared me. He was asleep the whole time and didn't remember a thing about it in the morning. I tried to call the neurologist to ask questions and was told he "doesn't do consultations, in person, or on the phone...only with another doctor!" I totally freaked out!
I just joined this forum...it is so nice to actually hear about what others are going through. I wish you all great strength and courage...and good friends.

By annwood On 2009.06.14 00:13
The violent dreams are quite common in PD. It seems to be centered around someone trying to hurt them. It can be dangerous for the bed partner and often results in seperate bedrooms. Good luck. No recommendations but just know that it does happen. Perhaps you should find a different physician! With this disease you have to have a way to contact the doc.

By annwood On 2009.06.14 00:14
P.S. I forgot to say welcome to our forum. It is a great group of people going through some very tough times but they seem to always be able to reach out to someone in need. Stay with us.

By karolinakitty On 2009.06.14 09:31
Bhowson ... i know how that feels .....
My Jim was recently diagnosed and i know he has had it for a long time now i've read up about PD... He too has the nightmare thing. He has gotten me in an arm lock and i knew he was dreaming. He also does alot of loud talking and yelling in his sleep. I know these are mostly from nightmares but some are quite funny and i can carry on conversations (sort of). In dealing with these episodes of arm locks and flying arms, i found that talking is the best way, panicking and yelling back seemed to make it worse. I talk soft and gentle saying to give me my arm back. i need it to do things, almost like talking to a child, it seems to help with him anyway. Hope this helps, at least at this time seperate beds is out for me and hope i never have to....

By bhowson On 2009.06.14 17:43
Thanks everyone for filling me in about the violent dreams. Also the crying out...a really awful sound. Something new everyday with these disease. It is wonderful to have this resource, to have support and information, and just to know that others are out there going through this. And also thanks for the tip about gentle talking during the nightmares to calm him down. I'll try it.

By annegirl1 On 2009.10.10 02:26
Does this ever end or get better? We just put Bob in a nursing home. One day when I can sign him out he is almost his old self. He will walk around shopping, but as we get to the time of his next dose of medicine, he get himself in to such a fit that he is so hard to manage. If I am not able to get to the nursing home he has been so upset that he leaves, trying to find me. He is so afraid of everything. He seems to work it so that he acts up in order to have the home call me and I have to come and settle him down. The doctors and nurses are asking me what would I like to do about this. I don't know I am just a wife and mother. I have no medical background. I do know that I don't want Bob drugged up and drooling in a wheelchair. One day he is with me shopping or going to the park, then the next he is being restrain and uncontrolable.

By Emma On 2009.10.10 04:01
Cindy, I know exactly how you feel and what you are going through. My husband does many of the same things you mentioned. I do want to say that the nightmares, also called REM Sleep Disorder or REM Behavior Disorder, can be very dangerous. My husband started having them years before he was diagnosed with PD. I finally moved to another bedroom after I woke up with him on top of me pinning me down, as I struggled to get away he punched me in the jaw. I heard his fist make contact and thought sure my jaw was broken (it wasn't). Before that I had been kicked, pushed out of bed, shaken and choked. He also picks things up in the night and throws them around. Be very careful.

By annwood On 2009.10.10 10:39
Hi, Cindy
So sorry that you are going through this. I feel as if I am always saying I have been there, but I have. Does it help to have people tell you that all of this is a result of the disease - it is. This is not your husband. Those intermittent periods when they appear normal are cruel in some ways because it gives you false hope.

I also put my husband into a facility. I was there every day and it tore out my heart to see him so miserable. You wonder if you made the right choice, could you take him home, was there some magic combination of drugs that would make him happier. The guilt is always there. I remember the telephone calls asking me to come and calm him down - more guilt. In my case, they kicked him out after three weeks saying they couldn't handle him. I brought him home and hired a lady to help me. It took both of us 24/7 to keep him at home. He died 3 months later. I don't know how much longer I could have handled the situation.

In looking back I think I would have distanced myself more after I placed him in the home (hard to do). Tell the staff that you are not a physician and they need to figure out what to do - they are being paid for that. If they need him calmed down it is not your responsibility. Nursing homes are short staffed and if they know that you will come running on demand they will take advantage of that. Understand that this is not your husband, he would not have wanted to be this way. At the same time, he is that way and there is nothing you can do to change it. As I like to say, they are now small children and not above manipulating you just as a child would do. If he goes out with you and starts "acting up" take him right back to the nursing facility. Try not to feel guilty (if you figure out how to do that let me know). You can no longer provide the kind of care he needs and you are putting him into a safe environment. I used to try to imagine what my husband would have done if the situation had been reversed and that helped me with the guilt. I think he would have put me into a nursing home as soon as we left the doctor's office with the diagnosis. Sorry guys, but most men could not handle this. You don't see many men caregivers posting here, do you?

Stay with us - we are always here for you.

By lynn On 2009.10.10 18:49
annwood- You left something out. After the diagnosis and checking you into a nursing home, most husbands would find another women too! I thonk it's the nature of the beast.

By LOHENGR1N On 2009.10.10 19:22
HEY!!! That's a sexist remark! (Good thing You put most in there, some might be more appropriate. Grumble, grumble....)

By annwood On 2009.10.10 20:34
Sorry, Al. We would never think that of you (ha,ha).

I used to tell my husband that if I died first he would have a date for my funeral.


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