final stages of parkinsons

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missing my wife
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/14/2012 12:01 AM (GMT -6)   
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.

jane t
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Date Joined Nov 2012
Total Posts : 9
   Posted 1/6/2013 5:58 AM (GMT -6)   
HI We have my mum in law living in a annex with us who also has Parkinson she ius 85, she also see's things and people that are bit there .....she sleeps some times for days at a time ....some times she will eat oithers she wil tell you sha has already eatten ......this seems to be a pattern  with parkinson we have mentioned to the Dr about sleeping but nothing was wrong all test came back fine ....the latest rick is not to swallow pills but to suck them ....we have now to crush mediction that can be crushed and that that can't haws now to be given in liquid form which aparently iis not so good......mum had a fall 15 months ago now and has not walked since .....so is not bed ridden so no more ovens left on or cookers with burning pans .....Dementing is not a nice side effect she has phone out police ...said she was being held hostage ...armed response unit came 0ut to that one ....grin ...thank goid they saw the funny side to it and used it as a learning curve ...fire department in respinse to her saying they were on fire ....the phone was given to her by a care worker we had to remove all cordless phones from the house so she could not be given one ...now she is here there are no phones in her room either .....Talk to her Dr some times a medication reveiw can help her seeing things in the beginning .....mum sees flies so a smple thing like a fly swat made her so happy she sees em she kills em end of night mare ....

blessedwife
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Date Joined Dec 2012
Total Posts : 23
   Posted 1/6/2013 10:38 AM (GMT -6)   
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.

jane t
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Date Joined Nov 2012
Total Posts : 9
   Posted 1/6/2013 3:53 PM (GMT -6)   
Hi So wonderful to know we are not alone ...When Jons mum called [we live in UK ] She dialed our 999 got the emergency operater who asked which service she then said police am being held at gun point ...they then put her through she chatted away then fell asleep they thought the theives had got her and sent out the boys in blue our top lot in the big black van mask armed to the hilt she got the full monty full armed respoinse unit ...and god knows how many back up- cars ....the village still talks of it ....quite little sleepie village and she calls out the armed police unit ...can you imagine ...my father in law was asleep in his chair head in his lap he awoke to several coppers all masked up- padded uniform with guns so shockied he had a stroke in fact he had 5 in two days because of it .....it was this that prompted us to build a annex to our home to put them in he lived to move into it and was here for the ast 2 months of his life so saw his boy each day ....and now mum is in it on her own ...she is bed ridden but looks out into the garden she has 18 windows in hr room which is 8mtrs by 4 mtrs so a large space for her ....I have a back injury that I got in a car accident so cant do the caring for her we have a care team that come in 3 times a day to wash her in the mornng rotate her at lunch time then rotate her to her backi at tea time and we pressure point move her by the electric bed untill they come back in the morning ......does your dad sleep alot???? I knoow I let a post some where else on this web site but cant find it so nice to meet some one who undrstands sending a smile your way Jane [from over the pond ]

blessedwife
Regular Member


Date Joined Dec 2012
Total Posts : 23
   Posted 1/7/2013 5:00 PM (GMT -6)   
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?

jane t
New Member


Date Joined Nov 2012
Total Posts : 9
   Posted 1/8/2013 3:14 PM (GMT -6)   
Hi Blessedwife.... So good to hear back ...the heart problem could be due to the Parkinson as Parkinson brings on hardening of the muscles .....Vera has arithmia [think I spelt that wrong but you get the drift ] also very low blood pressure and to be honest not sure what else .....Jon and I are still learning we have a care team that come in bath her and move her 3 times a day but since the do with her pills on the week end we now give pills ...that was a awful shock finding all her night time pills n her mouth the next day can you imagine 11 hours later and her sucking the blnking things ....nightmare ....vera has a pea bag so no need to potty her and the other only takes place 1 a week so they hoist her for that .....but she is bed ridden because hr bones are rubbish the spine has gone ...today she says she s making cakes again and was not happy when we could not find them ...Jon tried the tack that he had taken them to work for the boys to share was having none of it ...do you get this does your dad thnk he has done things to ?????sending you a smile from over the pond ....Jane

blessedwife
Regular Member


Date Joined Dec 2012
Total Posts : 23
   Posted 1/8/2013 8:05 PM (GMT -6)   
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.

jane t
New Member


Date Joined Nov 2012
Total Posts : 9
   Posted 1/9/2013 3:22 PM (GMT -6)   
Evening Blessed wife ....Just her across the pond again .....this site gave me a virus yesterday so Jon had to clean my c omputer so am on line late today ....do you hawve fb ?? I have fb page where you can see the miniature dolls I make in my spare time to keep me sain I have a large dolls house that I am working on if for fun younwould nlike to look and see ??? tody mum was in good humour I found out one of the tablets she was taking could have been the cause of her sleeping cos guess what since we had med change on Saturday she has been awake 5 days awake wow ....for us that is something will be interesting to see how long this last ....our care bills are huge worries us to death ...today mum has been wanting her checks tht came in the post ....she has rattled on about them all day problem is not had any come in the post she has driven us mad we tired a old check book she blew her stack ...tired telling her Jon had taken them to the bank ...nothing worked soon it will be bed time wonder what tomorrow will bring ....she like her pills crushed and n the jam also like the ones that desolve ...not as good quack said but heh cant have pills stuck on hr tongue either ....today we turned our beding around and she removed the duvette from its coover and then managed to tear a dirty great hole in the cover I had put on the duvette to make it6 water proof and poured water in it ...I caught her as she was doing it she said she was washing it .......GR rrrrrrrrrr one vry wet duck down duvette ....big BBBBBBBBBBBbb comes to mind [this is a swear word over here grin ] the B that is ......so into the drtyer it had to go ....of to store to buy another watr proff cover will now have to put ties on all sheets at bottom to tie to the bed so she can no longer do this .................we to have hoist two of them one that hangs ovr her hospital bed and oone that is portable ...you try the pills in Jam most parkinson folk have a sweet tooth for some3 reason see if that helps with the pills worth a try eh ...sending a smile let me know if you would like to go see my dolls house on FB ....Jane accross the pond

blessedwife
Regular Member


Date Joined Dec 2012
Total Posts : 23
   Posted 1/9/2013 3:37 PM (GMT -6)   
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.

jane t
New Member


Date Joined Nov 2012
Total Posts : 9
   Posted 1/9/2013 6:11 PM (GMT -6)   
hi Blessed house wife ...my face book ID is Jane Templeman just type in my name in search engine on FB ok you will know you have found me because on my fb picture it is a doll in Georgian costume ok she is dressed in blue silk she is but 5 1/2 inch tall she was made for my pal for a xmas gift from me and now lives in her dolls house ....this site keeps giving me a virus any way just friend me on FB to see all the dolls house pictures on FB also my baby dolls that I make when the weather gets to hot to paint th china dolls always making something just have to keep my hands busy ....mum is now asleeping so peace rains in our house my computor is now clean again look forward to you visiting on FB stop in at my Rosehip cottage and part take of tea with Aunt Agatha she is busy baking for a WI tea so you will be made most welcome I am sure ...and if you have time you can also go to see Miss Elizabeth and #Darcy in doll wood Manor sending a smile Jane

blessedwife
Regular Member


Date Joined Dec 2012
Total Posts : 23
   Posted 1/9/2013 10:15 PM (GMT -6)   
Hey Jane -- I visited your FB page and sent you a message. Your page is great!

youngest of 8 kids
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/21/2013 7:11 PM (GMT -6)   
hi to all on here. I have been reading posts to see if there was anyone in the same boat as me.. and stumbled onto yours.. my father passed away last saturday of pd. he had it for about 7 years, but the last 2 were the worst.. he followed all the steps, of everyone i have read about on here, until around christmas this year.. then he stopped eating and drinking anything and lost every bit of weight a body could lose and still survive, for a while. the battle is over, and I miss him so much, but for anyone with a loved one still here... fighting this horrible disease, please.. hug them.. right now.. and tell them you love them every day.. before you know it they are gone. I would give anything to see my dad one more time.. but i said all i needed to and wanted to. he knew i loved him, as did all of us children.. but he needed to go. It was time. This disease is cruel. so cruel. But when the time gets close, you will know.. and dont waste a minute of it. cherish any moments you have left. if just to hold their hand.. they know you are there. hope this helps someone.. just felt I had to say how i felt. I miss my dad...
 

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 2/15/2013 6:47 AM (GMT -6)   
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)


la detente
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/4/2013 11:25 AM (GMT -6)   
My mother in law has parkinson. She is now unable to walk use her right hand and is starting to have difficulty use her left. She has muscle rigidity and when standing is in a stoop posture. Lately she has started drooling and sometimes is chocking. Her speech is really becoming difficult to understand has she substitute word and does not really open her mouth to talk.
She is constipated always was but takes medication for it everyday.
She is not incontinent.
She is now very depressed since her husband of 65 years passed away in December.
Her eating habits have not changed she eats well.
She lives with us and we have a wonderful aid everyday.
What should I expect now.

makenzie48
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/25/2013 2:48 PM (GMT -6)   
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.

logistics
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/9/2013 3:51 PM (GMT -6)   
We will be seeing a movement disorder specialist at Mayo later this month for my husband.  After lots of research on the net I suspect PD.  He has not been able to smell for 20 years.  He is 60.  Has a tremor in one hand and sometimes his chin (which a doctor caught on a follow-up).  I also suspect dementia.  He has acted out his dreams for years also and has a pacemaker.  We were an active couple but now he doesn't want to do anything but watch TV.  This is not the life I had in mind but life is unpredictable.  I don't know how someone with young children can cope.  My saving grace, literally, is my faith. 
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