Hello everyone I'm sorry if I am going to sound horrible but I'm finding things really hard at moment
My husband was diagnosed late 2015 but probably had for a long time
He started hallucinating and confused 3 weeks ago and I thought he must have an infection but it was too much Madopar so the neurologist cut out a lot of Madopar and physiatrist gave Seraquil but he gets restless legs bad an hour before and an hour after taking meds and he thinks I'm giving wrong pills and is so horrible to me
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I'm sorry to learn of your troubles. I hope you can find a caregiver's support group or a trusted friend or family member to confide in. No one should fight this battle alone. Peace to you and your husband.
Thank you for your reply Yes I have a couple of friends who are there for me Some family members just see what they want to see and although when he was in hospital a couple of weeks ago they saw him at his worst with nastiness he is home now and it's my problem . I feel that it's my fault and I should just do anything my husband says
His situation is NOT YOUR FAULT! It is the medication and the sickness that is cause this. Don't let what he says get personal or the situation will get worst.
Make sure you let his doctors know what is going on so may adjust the medications.
We are going through the same with my father. All the best to you and your husband!!!!
Is his nastiness constant or occasional? Are you able to have assistance in caring for him? Can you assert yourself and let him know that being sick does not give him the right to abuse you.
Thank you yes constant when he has off time which is quite a lot now .Although he doesn't help himself he just stays negative and I try to say that on good times have positive thoughts
I have the same problems as you. It helps to give him a lorazapam for anxiety and trazadone to sleep, along with the Seraquel when he gets awful to live with. Being asleep is better than having him up and raging around with you being the one he gets mad at. My husband doesn't get mad at his adult children, just me. Fighting back when being told about all the things that are wrong with you, does no good. The big problem is the Parkinson's dementia and there doesn't seem to be anything to do except quiet him down. My husband is a nice person until the Parkinson's rage hits due to stress.
Thank you You make me feel much better I just think I don't do enough We are going to see the Neurologist as soon as we can for something for the pain
Yes I realise the dementia is setting in and I have been an assistant nurse in Brisbane especially with the dementia and nothing prepared me for my own husband
My husband doesn't have pain, so I suppose pain makes yours even more angry. I try and try to make him happier, but it just isn't to be.Being mad seems to release serotonin that makes him feel better. My son now sees what it is like and tries to help, or at least understand. I didn't want to complain about him to our kids, it just didn't seem right after being married for 57 years. I worked as a registered nurse and I had to laugh about you never knowing he would be your patient. That's how it is with me. We don't have a choice but to keep hanging in there. The thing that makes it the worst is when mine gets under stress of any kind, like trying to play chess, his whole body freezes and he feels sick and has panic attacks.
I don't like our neurologist. The last time we were in the office he made me cry, saying he has no other patients like my husband who gets panicky over the off times on his Sinemet. One woman in our Parkinson's support group hates him so much, when she heard he plays in a band in a local cafe, she kidded about throwing a bomb into the place. But, he the the only neurologist in our small area with our insurance plan.
I wish you all the best, I know what an awful time you are experiencing in your life. Marijuana does calm him down during panic attacks and I am growing my own now in what was formerly our sauna. I think it would be great for your husband's pain.
Mine does have an Alexa that he has play his music requests all day long and it is really good for him.
What a lovely reply and you even know when I said I wasn't prepared for my own husband being the patient
He does like his music so he has an iPad which is simple to use as the dementia is rushing in now
We live in Australia and I'm not too sure about our neurologist he can be rude we only got him when my husband got so confused and I thought he had an infection and he had to hospilitized and he changed all his medications
I feel so much better seeing replies from lovely people All the best to you both 😊😊
It doesn't do any good when I get righteous and upset and I say (admit it, sometimes i yell) "quit it", because he isn't in a normal state of mind.
I'm going to order some oil of lavender as mentioned in another letter here. Probably Amazon sells it. I always wondered about lavender in aromatherapy ,because he can't smell.
Seraquel helps him immensely (and me, because he isn't psychotic anymore),Niacin, not so much. I know the whole problem is that he is really scared; he still has his mind, but, there is nothing I can do to help in any big way.
My daughter married an Australian and I spent a lot of time there. It's a great country! I was so shocked when i walked into a pharmacy and they filled the drug I needed , instead of the ,"come back in half an hour."
hi 9284 well i can understand him as a lot of us are in great pain with p,d im not excusing him as im not like that, im not sure were your from can you get him some medical cannabis as it will take away a lot of his pain.if hes nasty tell him to cook his own meals and do his own washing if hes nasty just walk away.regards.
Very sorry to hear about this. Please explain this all to the neurologist, so thst, perhaps, medicines can be adjusted and prescribed for help, with the several problems that you are having with him. Also, please ask for advice, like, perhaps, a hobby diversion, to get his mind off his problems, could be of some help. As one who has PD, it is not a pleasant ailment to have, in any way, shape or form. When I feel angry, or irritable, I try not to take it out on others. Instead, I listen to music, or play with my dog, or watch an action movie. If dyskenisia is a problem, it is harder to control one's movement, so sometimes a distraction of sorts is necessary. Mood altering medicines are helpful, if prescribed and taken in the right dosage. Perhaps an adult group day care could give you a little relief in the day-to-day care. It might be something worth looking into. Wishing you only the best.
My mom gets hallucinations and can be nasty as well. SHe has dementcia caused by anxiety. I have found that cbd oil has helped her tremendously. It has been proven to help people with anxiety. It also helps those with neurological disorders. Just make sure you purchase a good quality oil. This is what our whole family uses. Before anyone accuses me of trying to plug a company at the expense of struggling people, I want to assure you that I am not doing that! Music also helps my mom as does old movies from her younger years.
HempHealthInc.com
2 oz. 450 mg peppermint flavored cbd oil in a tincture form (pump)
I will be reporting back in a few weeks how this is helping two friends of mine with Parkinson’s. One who has had it over 25 years and the other recently diagnosed.
I’m sorry you are going through this. Try to understand it’s not your husband it’s the disease/meds and they kind of get outside of their selves and can’t control it. My motto is love more care less. While anything abusive would call for immediate interventions, trying to show “over the top” love and care often times turns those mean thoughts scary hallucinations into happy ones. It is not easy. I’m so sorry. Prayers for you and your husband.
Abrham Hoffner, MD treated hallucinations with 1000mg niacin (not niacinamine) 3x daily. my husband had them for months as a result of a med and was put on seroquil which made things worse. internist took him off the med and said it would take 6 months to get it out of his system. that night, in a moment of desperation, i found out about niacin. the next day, i started it and within 24 hours, after months and months of hallucinations, they stopped. they stayed stopped as long as i didn't forget to give the dose or run out. Caution: niacin can cause a 'flush' which is nothing more than temporary opening of the capillaries and feels like a bad sunburn for about 20 minutes. best to start low and work up.....we started at 1000 because i knew my husband didn't get the flush reaction.
Chastisement: why on earth would you think this is due to you or that you have to cater to him? Get over that....he has a disease, caused by alteration of his neurological system. He probably feels better and stronger with anger because it causes a temporary shot of adrenaline. You are in charge now, you are the adult in the crowd so you can expect some blowback from a man who has lost his sense of manliness and feels out of control and helpless.
Encouragement: we used Oil of Lavender caps, made by Integrative Therapies, to control the anxiety along with L-Theanine, an extract of green tea. They were like miracles without all the side effects associated with pharmaceuticals. Even though he was sickest the last two years of his life due to heart troubles and PD, those days were the best he had experienced in 15 years of uncontrollable anxiety and anger. His panic attacks had gotten so they recurred every 3-4 hours and made him feel like he was going to vomit...EVERY TIME. He never did but i can tell you he felt like it and as a result, we had NO social life. After the Lavender (he took it every 4 hours, not once a day per package directions...doc said he could have whatever it took), all that stopped....it was like a miracle. with the theanine, it was a double miracle. just don't take theanine too close to bedtime as it can keep you awake. his last dose of that was right after a 6pm dinner and then not again until morning.
DONZIM, thank you, thank you for writing again. I am saving your posts in case I'm ever going to need it. My thinking on it is that after a while of taking all those drugs you are developing a deficiency in nutrients. This should be shouted it from the highest rooftop. Mary
go online to UpNature. i am not an Essential Oil aficionado nor a customer but they have a good list of essential oils and what they are good for. I only have first hand experience with Lavender oil because I buy supplements from Integrative Therapy and stumbled on their oral lavender oil. UpNature does not sell it for oral use other than to say that most all oils can be used orally if you know what you're doing. I didn't know what i was doing but took my cue from Integrative which has really good products otherwise so considered them trustworthy. I do use Tea Tree oil myself for skin things that appear from age like skin tags and other mysterious stuff (it is a good antibacterial/antiviral). Also Sea Buckthorn oil l(nobody calls this an Essential Oil but they probably should) which i got from a really smart Russian neighbor who saw all the bruises on husband after a bad fall....returning from ER with a few stitches and a LOT of bruising, more than most as he was on a blood thinner. Russian rushed upstairs and gave me his bottle, saying, "USE! Me mother doctor surgeon in Russia. Use all time for this. Only use Siberian." All directions in Cryllic or Russian or something on the bottle and not much more online but gave it a try.....unbelievable. so much so that all the nurses wrote down the name. I read that the Chinese are planting thousands of acres of the plant for probably medicinal use. the fruit is used to eat, cook with and for salad oils and medicine.
Let's face it....until things could be made in a petrie dish, most meds were made from plants, etc. The old timers scoured the earth looking for medicinal cures....why do you think all those ships returned to their homelands laden with trees and plants? not for food. To this day, such medical research and exploration continues. Just a reason in my mind to keep an open mind....if it works and doesn't hurt you, use it.
As a man married for 51 years to a faithful and adoring wife, I can speak for men in my frame of mind. My spouse cannot be expected to suffer the vagaries of my illness should it turn unreasoning, nasty, incoherent, or dangerous to her. There is a point where the cord must be cut with love and the person suffering from irrational actions be put in professional care. Secondly, do not let it drain your financial resources and leave you in your own private hell of poverty and destitution. Divorce is an option to transfer the outrageous cost of the disease at that point to government if need be.
You all can rant at me now but I cannot in good conscious relegate my loving wife to a hell of my making when or if it comes to that.
I have been married for 65 years to a wonderful woman, with whom I share four beautiful daughters and an, until recently, a happy life. Then, as the result of a medical operation under general anesthesia gone awry, ( March, 2016), I (we) have lived a situation which, in many ways, is similar to yours. It would be imprudent, here, to describe events in detail or put names on them, but suffice it to say I was terrible to her on occasions. Somehow, she put up with me and gradually my worst qualities seem to be receding. Prescriptions have been upgraded and are working well. My wife, who is 85, seems to have "weathered the storm" and has resumed her position as "mom". I hope it will work out as well for you
I Hope I am not horrible to my hubby as he cares for me have had,Parkinsons 4;years. He is 9 years older with his own health problems, I worry about him , we also help 91+year Old frail house bound Mum
Hubby does get a morning respite gets a Bike ride with no worries.
Mum cared for my dad and Nan with Parkinsons, Carers do feel guilty if they have time of their own.
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Any suggestions for managing this kind of dyskinesia?
Massive facial hair 🙁
Night time medication
