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By shirley On 2009.11.14 15:50
My husband was diagnosed with PD 10 years ago. He's tolerated the meds pretty well but has had to move up the line as the old meds stopped being effective. Had started to exhibit more memory problems in the past 6 months. Three weeks ago had a fall, fractured pelvis and left hip. Admitted to hospital from Mon to Fri. Had terrible reaction to narcotics in hospital, became violent and psychotic. Released and was to go to rehab facility before coming home. Refused once we were there so I brought him home. We have physical and occupational therapist coming twice weekly. However, still very confused. Thinks we are not home, wants to go home constantly. Becomes angry esp. with me. I am the cause of everything that has happened. Finally able to get someone in at night 5 days a week. He does not sleep very much at all. Today is very angry at me. Can do nothing right. Do I correct him when he's wrong (not our house, etc.) or do I play along and say we'll get to go home soon? Don't know which way to go. Doctors have finally prescribed seroquel. Had first dose last night, but only slept couple of hours total. I'm grasping at straws trying to figure out the right thing to do. Any suggestions?

By LOHENGR1N On 2009.11.14 16:31
shirley, yes please read this link narcotics are one class of drugs that really wreak havoc with Parkinson's patients. Generally they are avoided. By the sounds of it you're describing delirium more so than dementia. I know right now it won't seem to make a difference which you are going through with your husband. Try getting through to His doctor, make Him listen to your concerns. Many times if a diagnosis of dementia is made the Doctors view it as a you'll have to get used to it because there's nothing you can do about it kind of thing. A no cure no recovery disease. However if you can get the doctors to consider delirium as results of reaction to narcotics then they may be more open to try different treatments as a strong possibility of recovery exists. Please keep Us posted on the situation. Wishing you the best. Take care, best of luck and hang in there. Sincerely Al.

By Pearly4 On 2009.11.14 17:02
My mother had back surgery 5 years ago and we went through exactly what you're going through. She was intolerable once she got sent to rehab but I couldn't manage her at home and she had to stay. She threw things, saw things, called the police repeatedly, called me, claimed to have been sent to sleep in the garage, etc. etc. Once she came home she experienced less of the hallucinations, delusions but that was 4 weeks down the road.

Surgery and anesthesia is hard on the body. I just had outpatient knee surgery at 60 and felt the effects for at least two weeks. Imagine what an already compromised brain and body are going through in your husband or my mother's case. It should lessen, gradually, very gradually, and he should come back to his "normal" state, though we found each health crisis left my mother 80-90% of her "normal" state. She too was put on Seroquel but it takes a few weeks to hit the correct doseage and raise the blood levels of the drug. It all takes time -- hang in there.

By Emma On 2009.11.14 17:09
Shirley, I know how hard this is and I feel for you. You said that your husband had a bad reaction to the narcotics he was given. Is he now taking any medication at all that is a change for him? Some seemingly innocent drugs can cause havoc at times. Last Christmas Eve my husband was having delusions and hallucinations like crazy (for one thing he thought his brothers dead body was on our floor). I had to call his doctor at 3:00am on Christmas day because I didn't know what to do. It turned out that it was caused by the Nyquil he was taking for a cold. Go figure. You do need to discuss this with his doctor, the sooner the better.

In addition to the Nyquil episode there are times that my husband has hallucinations and delusions. Today for instance he has taken off his underwear four times because he is convinced that I am putting womens underwear on him. Last week he didn't believe the house was ours, similar to what you're going trhrough right now. I usually find that it's best to stay neutral, don't buy into it and don't try to talk him out of it. Usually if it's a delusion (he believes something that is false) I will ask him something about it like "whose house do you think this is?" or I'll just say something like "I'll look into it". If he's having hallucinations (where he sees something that isn't there) I'll say "I don't see it but I believe that you do". It's tough no matter what you do. I'm interested in knowing what the doctor says. Hang in there.

By lurkingforacure On 2009.11.15 11:28
My FIL just had experimental heart surgery and boy, was he loopy afterwards. He was convinced he had two hearts, among other imaginations. It is almost a month post-op and he still is not back to where he was before surgery. He is 79 and the docs in rehab have told us that ANY anesthesia is really hard on the body and the older the patient....the harder it is. They have not come right out and told us not to expect him to get back to where he was cognitively pre-surgery, but I that is what I expect. It is just such a hard thing for a tired body to go through.

I would not worry too much about dementia unless things do not only not get better, they actually get worse...why add that worry to your pile? There are so many cases of seniors having this issue after surgery that I really think they should add it to the list of post-op care. It does go away, perhaps not completely, but it is not dementia. I hope that this is all you are dealing with and that things improve for you.

By annwood On 2009.11.15 21:39
We have discussed this in the past but it is good to bring it up again. Anesthesia will always make PD symptoms worse and it can take months for it to wear off. This includes dental work. Avoid ALL surgery unless it is absolutely necessary. In the same vein, any hospitalization is a problem. Few nurses and physicians understand PD unless they work with it all of the time (even then some don't). Medication schedules go to pot and PD symptoms usually become magnified. Even ER visits can be traumatic. I finally started taking my husband to an Urgent Care facility when he fell or had a problem. They can perform x-rays there and it is so much faster. I was always opposed to the "doc in the box" facility but after visiting the one close to us I found the staff to be very good. They can handle about anything and seem to be good about referring a case out if they are uncomfortable with it. In both the ER and Urgent Cares you have to be vigilant about the medications prescribed. Narcotics can be a disaster so don't let them prescribe them. I always found that Extra Strength Tylenol did very well for my husband.

By shirley On 2009.11.16 10:56
Thank all of you for responding to my post. It does help to know that this has happened to others. My husband is just not himself and it is worse at night. We will see if the seroquel will work. He's had it two nights now.

By WitsEnd On 2009.11.16 16:56
Unfortunately dementia seems to start at night. They call it sundowning. If it progresses, it will start happening earlier each night until the periods of being lucid become less and less. Some meds do help for awhile.

Other things can make this worse. Dehydration, some meds, sleep deprivation (PD can cause terminal insomina), new places/surroundings, stress. Addressing all things that can make it worse may also help.

God bless and hang in there.

By trapper On 2009.11.16 21:31
No, you are not alone. My wife who has Parkinsons was hallucinating when she was recovering from hip surgery a couple of years ago but is okay now.

I can tell you that hallucinations are a scary thing for the caregiver, as well as for the patient.

Take care, and "one day at a time"!

By Pick On 2009.11.17 22:29
Hi Shirley,

I just wanted to write a quick note to say that while it's tempting to correct someone experiencing dementia, a delusion, whatever it may be in your husband's case, experts recommend that the most helpful actions are validation and distraction. Validation can be difficult because we may feel like we are lieing to our loved one, but it doesn't have to be an elaborate lie. It can be as simple as "I know that you want to go home, but why don't we have a [insert favorite snack or beverage] first?" And there you see the distraction.

I also think it's important to consider that all behavior, no matter how "out there" it seems to us, has meaning. A classic example of this is the widower who asks every 10 minutes where his wife is. It would be cruel to remind him every 10 minutess that his wife is deceased.....but the meaning underlying the behavior might be that he is lonely and would benefit from an increase in social activity. Asking to go home, stating that this isn't home, when the person is in fact at home etc. is fairly common I believe. Oftentimes the person is actually thinking about a home from their past such as a childhood home which may live in their memory much more vividly than the current, more recent home.

I hope this helps....I know from personal experience it's easier said than done.....especially at 4 AM when your loved one (in my case, my dad) insists on checking every door and window in the house because (gasp!) someone is trying to break in!

Good luck. Pick.

By WitsEnd On 2009.11.18 09:05
Pick is absolutely right. I learned that less when one time my dad kept insisting he had pills in his hand and kept swatting at the dog to stay away. I tried to tell him he didn't have any pills and got no where. Someone else came over and said honey, "give me those pills--I'll take them for you". He turned his hand over and poured absolutely nothing into her hand and then he was perfectly satisfied. When someone is in the middle of a delusion, if its one you can go along with, it's better to go with the flow.

Where mom and dad were at actually had mailboxes and door knockers and door bells on the wall so if somebody got fixated, they could go "check their mail" and "visit somebody". It put them "at peace".

I think there is also something about the physical action of moving and physically making movements that mimic what they think they are doing must also help too.

By in-faith On 2009.11.19 20:26
Regarding the effects of anesthetics, does this also apply to dental freezing?

By annwood On 2009.11.19 22:17
What is dental freezing?

By in-faith On 2009.11.20 08:09
Dental freezing is when they give you a needle so you can't feel anything in that area. My MIL may need some teeth pulled. I know she can't have a general anesthetic, but will the needles affect the PD? (My son had 4 wisdom teeth pulled just with needles.)

By mylove On 2009.11.20 09:34
It depends. Stay with her for the first time she has local anaesthetic to make sure. My DH had a terrible reaction to the lidocaine + epinephrine that dentists typically use to numb an area. It negated ALL of his meds immediately, and he spent several hours in the dental chair unable to move. It was a frightening experience, and one we have been careful not to repeat. We talked to his new dentist about the experience and there are other drugs they can try that work better (the lido/epi combo is just the standard).

There is something about the lido/epi used in a dental dose that is the key; not necessarily the drug itself. He had the same drug combo on another occasion when he needed some stitches in his hand, but it worked well for that purpose. We were perplexed until we talked to the emergency doc about what had happened. He said that a dental dose used to block the nerves in order to do dental work is FAR larger than the little bit they use to do stitches, plus it's up in the face closer to the brain. (If you remember your last dental visit, you may remember that they don't just use one poke; it's generally several spread out all around the area. They do that to make sure that all the enervation of the area is blocked so you don't accidentally get un-numb during a procedure.) Plus the dental lido is a longer lasting formulation than the ones the regular docs use.

Just be careful, communicate with the dentist (and educate him, if necessary! We had to), and be prepared for any consequences. It's largely trial and error.

Hope this helps! Good luck.

By in-faith On 2009.11.21 09:19
Thanks mylove. I'll take this info with me when I speak with the dentist.

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