final stages of parkinsons

My wife is 59 years old and she has had Parkinsons since 1999. She is very dillusional and is seeing alot of tings that are not there. She will call me and tell me that someone is going to send her to jail. She does not remember all the time that I am wiht her but will say that I have not been around to see her. I have her in an assisted living for her safety. I havde tried to take care of her and it has got to where I canot do it my self. She has lost a lot of weight and now weighs around 94 pounds. She is nothing but skin and bones. I am at a lost and do not know what to expect next. Please if some one has more to say I would love to hear what is next.

Hi Jane -- I responded to you on a different thread, but just saw this one about your mother-in-law calling the police. This is too funny -- my dad did the exact same thing! He called 9-1-1 and told them he was being held hostage! They transferred his call to the local police department and they sent out three officers at 11 p.m. We were sound asleep and it scared the daylights out of us. They came in and talked to him -- he told them to be sure and check on me and my husband because someone was holding a gun to our heads! They were very kind and understanding, thank goodness, but I did promise them that I would take his cell phone away, which I did. That was close to a year ago and he still sometimes whines about wanting his phone back.

Hi Jane -- So sorry to hear about your father-in-law. Our situation thankfully didn't bring on anything that drastic.

My father sleeps off and on all the time, but doesn't sleep for a long time at once -- more like little cat naps. We get him out of the bed 3 or 4 times a day with a lift machine and he sits at a table in his room to eat his meals and take his medicine -- occasionally he will sit on potty but doesn't really like to. He used to eat real good, but lately has gotten to where he doesn't.

He has other health issues besides the Parkinson's -- heart problems -- so it's not always easy to pinpoint what's going on with him. I think the Parkinson's meds make him sleepy because he usually sleeps 2 or 3 hours after he takes them, but that's just my opinion, no one has said that specifically.

How are you and your husband holding up? Taking care of someone that's bedridden and completely dependent takes some getting used to doesn't it?

Hi Jane -- You could be right about the heart problems. My father had his first heart attack at least 10 years before he was diagnosed with Parkinson's, but I personally think he had Parkinson's way before they diagnosed it. He has never been the type to voluntarily go to a doctor, so unless it was an emergency and he ended up in hospital they would never have the opportunity to find out what was wrong with him. Even now with all his problems he doesn't want to go to see a doctor unless he needs to get his prescriptions refilled. Of course, that's all mute now as his condition wouldn't allow for us to even take him to a doctor's office -- if he gets sick or something happens (like a fall) we have to call an ambulance to take him to the hospital. We had home health care for about six weeks, but after that they quit coming "because they couldn't do anything for him." We just trudge along and do the best we can.

Your mother-in-law sounds like a real trip -- and no I cannot imagine finding pills in her mouth after 11 hours! That is wild. My father mostly strangles on his and ends up spitting them out -- then I'm crawling around on the floor trying to figure out which ones he didn't get down!

My father was a gambler and played cards and shot dice before he got too sick to participate -- and that has only been within the last year! He was quite a character when we were growing up, and actually still is. When he has dreams that he wakes up from and thinks are "real" he's always been in a card game, and has usually won a bunch of money. I wish! He's always wanting to know where his money is and telling us to look in pockets, drawers, etc. Kinda like your MIL looking for her cakes I guess.

Another problem we are currently having is him not wanting to be lifted with the lift machine. He can't understand why we can't just pick him up. He gets highly irate and several times has just said that he's not hungry, or is tired and wants to sleep. He has no concern at all of what he was doing to my husband's back before we got the machine. That has absolutely got to be the worst thing about this disease -- when they get real bad, they have no concern whatsoever for others.

I have already told my son that when I get old and sick, if I am anywhere near this bad, I want him to put me in a nursing home. My worst nightmare is that I would ever put someone I love through this. If nothing else, this is a good learning experience.

I really enjoy hearing from you about your episodes "from over the pond." I get a good laugh and it encourages me that we are not alone in this.

Hi Jane -- Glad mum was in a good mood today, and also glad to hear you may have solved her sleeping problem. However, if she keeps it up about her checks and ruining the linens you may be wishing she would go back to sleep. LOL

We've had a good day so far, very quiet and cooperative for a change. Don't know how long it will last, but going to enjoy it while it does! And, I'll have to try the pill trick you suggested -- he does love sweets.

I would love to see your dolls house on FB. Please send me a link.

Hey Jane -- I visited your FB page and sent you a message. Your page is great!

Hello there people, looking at the mentions of hallucinations reminded me of the day I received formal diagnosis. We went through what I could expect and the drugs to be used and it was then that the topic came up. I asked the neuro what , in his opinion, were the worst side effects of the medications his patients had reported to him - those that caused most distress. He told me that hallucinations were the ones that freaked people out the most as when they first happen they can be so realistic. I nodded and said 'yes, I used to spend a lot of money getting into that state.' He only stopped laughing when he realised that |I was serious. The hallucinations are induced by long term levodopa treatment he told me. Like the agonists with their frequently reported obsessive/compulsive associations we are darned if we do and darned if we don't. It can be equally distressing for those around us when these things take hold as you are all aware by your postings. I am ten years into this thing and am now starting to to be dyskinetic [only mildly so far] and I like to kid myself that I am awaiting the hallucinations with interest. If they hit. And it is a big if as like all things PDR it is unique to the individual. We cannot assume anything. I wish you all well in your life and those of your loved ones dealing with this.
The Bear

Post Edited (The Bear) : 2/15/2013 5:33:05 AM (GMT-7)

Hi , Iam new to this forum.  It is a big step for me. My husband is 59 years he has had parkinsons for 12 years.  He has deterioated very fast the last 2years I am lost as to what comes next.  His dr will tell me he is in late stages with dementia but even after reading everything I can find i do not know what this means.  We have two children one is only 12 year old.  I am finding it more difficult daily to find new strenghth.  I wish someone could tell me you still have 5 years or 6 years , but the truth is no one knows I don,t know. Watching him slip away daily is emotionally painful for me and my children.

This isn't the channel that I normally read (Lymes) however my Father in Law (the outlaw) is now 85 and has had Parkinson's for quite some time.

I have added NAD+ to his diet and it seems to be doing wonders. Can tell when he's not taking it.

You might go to youtube and check this out. Seems that there is a clinic which puts iv nad into their systems and they make great recoveries.