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Topic Psychosis? Go to previous topic Go to next topic Go to higher level

By tfmayka On 2010.01.10 12:07
Hello again,

I am back again with an update and questions. I began posting under "reading and posting" but decided to start here today. Mom fell and broke her hip 9 days before Christmas. She broke the other hip less than two years ago. This time, I was standing just feet from her but was not looking at her so couldn't break the fall. Sometimes I feel guilty, but I have to let that go!

Mom is in a nursing home in the rehab wing, in a nice private room with very attentive and caring staff. They try like crazy to make things nice - even making her ice cream sundaes because she said she likes them.

Unfortunately, her interpretation of things is often a whole lot different from reality. She is diagnosed now with psychosis because of paranoia, poor memory, confusion, hallucinations, and the accusations she is making. My sweet and funny Mom is not that at all, she is complaining and critical and sarcastic now.

She often thinks I am in the hall or visiting the man across the hall and won't stop in to see her. Yesterday I walked in and the aide was desperately trying to calm Mom and when the aide saw me, "thank God, you are right on time" was her immediate reaction. Mom's anxiety and confusion is difficult for the staff to deal with, and her faulty reasoning is creating havoc. I am going to get her back to the neurologist, hopefully this week.

The drugs she is being given may be a big part of the problem, on top of Sinemet and Requip, she is taking Antivert for the leaning, Mestinon to maintain her orthostatic blood pressure, Exelon for the hallucinations, and now Seroquel for the psychosis. She has never responded well to medications and always had to start with small doses and increase if there was benefit observed. We have tried a lot of medications and have discontinued a lot. Having frequent urinary tract infections also causes mental and physical changes which look like deteriorating Parkinsons symptoms.

The urinary incontinence is a huge issue - Mom wants to be continent but has not been for a long time. Yet she figures if she can get to the toilet, even though she is already wet, if some of the urine goes where it is supposed to go, then she figures she is not fully dependent. But asking for help to go the toilet every half hour or even every hour is a bit too much for anyone to deal with, especially on two bum legs. But how to get her to accept "just let it go" and someone will help you get cleaned up and changed on a 2 hour schedule? She is not getting it, therefore she criticizes the aides.

The Social Worker told me Mom will not be able to be alone at all, IF she returns home, but I had figured that out already. That will be very difficult because I have to work and I have to sleep, and we are not wealthy people so cannot afford 24 hour care even if we could find competent folks for an unreasonably low wage.

My sister and I are meeting with the Social Worker Wednesday morning, then with Independent Living for Seniors - who would be willing to put her into "shared aide" housing which is absolutely a "no". But is a nursing home any better of a choice?

My thinking is getting ragged, and my ability to reason out all of the possible options is getting worse lately - full time working as a nurse takes about all I have left in me at age 61 - what is best to do with/for Mom is a whole other issue, and it has me a bit frantic.

If I need to have have her go to a nursing home full time, is it better she is in one here where I live where she knows only my sister and me and a few others who would not visit (she moved her a little over a year ago), or would it cognitively help her to be in a home in her hometown 300 miles from here where my brothers and sister-in-law and her friends can visit her?

She misses her friends terribly, but I am not sure with her mental and cognitive decline if they would even visit regularly or if there is any benefit in such an upheaval. I would only be able to see her about every three months or less often with our weather.

She is really bonded with me now, and sees me as the one who rescues her from whatever she is imagining when I show up. That was occuring at home before the fall, even. I'm the oldest of six, can you tell? She often says to me, "you are the only one who offered to take me in" - yeah, like for about 10 years I was after her to move here with me, and she did it only when her doctor told her she couldn't drive any more. So I am the hero in her eyes. Fortunately we are good friends to each other, too.

I mentioned my sister, who is local but not medically minded and has a family and a job also. She is great when it comes to helping out, but cannot take on any of the consistent responsibilities beyond visiting, encouraging, and some respite for me here and there. She has the capability of remaining rational when I come to the end of my rope, and is my best friend.

I am at a loss, can you tell? Where do we go from here? If she is declared at a plateau, Medicare won't allow rehab to continue, so the decision about placement has to be made very soon.

I will appreciate any and all thoughts from this forum of heart-to-hand lovers of the PD folks in our lives. Blessings, Terrie

By LOHENGR1N On 2010.01.10 16:15
Terrie, I'm not sure I'm qualified to give advice on the subject, however, who dx'd the psychosis? Was it a Doctor at the nursing home? A lot of times the Doctors aren't familiar with P.D. and the med's. A friend of mine went into a local nursing home for rehab after and operation to make a long story short the put him on a tranquilizer which put him into the fetal position for the time they kept administering it. Which was until his Neurologist found out and stopped it. I'm sure some of the great caregivers here can advise you better than I on options that might be out there for you. Take care, best of luck and hang in there.

By overwhelmedinFL On 2010.01.10 21:50
Your story sounds like mine in a few years. I hope you find some clarity. I am one of 6 and the local hero to take care of mom. My mom is not as progressed as yours but not far away if she doesnt start taking care of herself better.

I wonder if your mom still has a UTI and the psychosis and stuff is from the UTI still? I just had my mom tested for a UTI. My dad broke his hip on Xmas eve and he is in rehab now (he is not PD, he is 91 though). He has a terrible UTI right now and is slurring his words, grabbing for stuff that he is hallucinating and also is confused and talking about kids playing on the wall. I find out tomorrow if mom also has one, it would explain her recent fast progression, confusion etc.

I also have the incontinence issues with mom. When it gets to where they are constantly having accidents what happens? Do they get permanent catheters? Ouch! Mom had a urologist tell her he could fix her urine in continence but I am so scared for her to get any elective surgery.

It is so hard to make decisions as a caregiver. I try to give my mom the options and let her thoughts weigh heavily on the final decision. I don't know that you can do that with your mom's current state...and often the lack of $$ keeps most of the options out of reach.

It is great that you and your mom have such a close friendship. I hope she gets out of rehab soon.

By karolinakitty On 2010.01.10 23:03
I'm definetly not a doctor, nor would i recommend anything crazy but get ahold of your neuro. From all the drugs she is on i bet the hallucinations and lashing out are side effects.
When you talk to the social worker, make sure you get all your options, stop and think about your decision. If she has resources WITH insurance get all the help you can. If she doesn't ....get all the help you can. Contact your local department of aging, united way and whatever else you can to try and get the assistance she needs.
Don't know what to tell you about the incontinence, we haven't reached that point yet. But try and convince her it is for health reasons or personnal hygiene.

By susger8 On 2010.01.11 09:49
My dad's time in rehab after breaking his ribs was the first time he showed psychotic symptoms. He actually got into a fight with the aides -- kicking and punching them, because he thought they were trying to kill him. They were just trying to help him back into bed after he fell. He was there for six weeks and was really loopy the whole time. But when he came back home, he improved a lot. His memory was still shaky, but the delusions and hallucinations went away for the time being.

I had already seen that he would need a full-time caregiver when he came home, which the rehab center recommended also, and fortunately he had enough savings that we could hire a live-in aide. (Live-in aides are cheaper than getting someone in for 8 hours a day, strange as that seems.) I considered assisted living, but my concern was that he would not get much attention or social contact, since he is not much of a socializer and would probably just remain in his room most of the time. With the aide, he has one-on-one care, which he would never get in assisted living or a nursing home.

I think that a person who already may have some impaired thinking often deteriorates alarmingly when removed from his or her familiar environment. Hospitalization seems to be very disorienting for a lot of PWPs.

The rehab center should have a social worker, and you should also be able to get help from your department of aging, as already mentioned. Definitely make use of those resources. They can be extremely helpful. Our elder care system is so fragmented, you need a guide to find your way through it.


By tfmayka On 2010.01.17 14:02
Hello all - what a wonderful response to my situation, you are all right on top of being helpers. I am going to try to respond to all the suggestions and ideas and questions - this week I have met with a lot of folks for answers.

I was pleased to see that Mom is better, but a long way from being capable of any form of self care. She is less anxious and less confused which makes her situation easier to handle - she has learned to release the wheelchair brakes and scoot around the room - very slowly, but she gets what she wants sooner or later.

We saw the neurologist and learned that psychosis is indeed the diagnosis for the hallucinations and paranoia. The first step in trying to bring that under control is to increase the Exelon patch dose. If that does not help to improve the hallucinating, then that will be discontinued and consistent use of Seroquel in a small dose (12.5 mg - 1/2 of what they gave her in the past) will be tried.The leaning is worsening also, which is vertigo. The plan for now is to slowly increase the Meclizine - and within 24 hours she was sitting up straighter!

My sister and I met with the social worker at the nursing home and learned that P.T. is seeing actual regression. It may be due to the urinary tract infection which is being treated so maybe things will look up this week as the infection is resolved. The hard thing to learn was that Mom is showing decreased ability in ambulation, she is not taking the initiative in physical activity, she has poor motor planning and needs verbal cues for everything - which she cannot consistently respond to. We were told Mom needs to make a big cognitive and funtional improvement in order to be considered safe to go home, even with help.

I cannot say whether it is fortunate or unfortunate, but Mom has been spending down her inheritance over the years since Dad died at age 61. I think she believed she would die young also, because she needed a pacemaker just a month after he died, and had a heart attack a year later. That was almost 20 years ago. But her money has dwindled significantly and now we are facing the daunting task of completing a Medicaid application in case she has to remain in a nursing home.

There is a lot of community support and senior services in the county we live in, but Mom has been resistant to checking out day programs, or visiting helper programs. She believes all will be well if she ignores the tough stuff - Ms. Scarlet O'Hara, for sure! For years she has refused to consider that her Parkinson's would get worse or that she would need assistance, in spite of my best attempts to educate her about the realities of life as seen from the perspective of a nurse. She would not participate in P.T. early on, she did not want to know about or visit programs that would keep her involved in community activity or help her to meet more people her age since she moved three hundred miles a little over a year ago to live with me.

The incontinence has been a major issue and now that it has become so much worse that dribbling, she has used it as an excuse not to leave home. She was very creative in handling it though and still wear her beloved blue jeans. She finally gave in to wearing the incontinent briefs when pads overflowed too often, but she would put a pad inside it so she could change the pad without having to change the brief too often. Now the folks who make these things have a product called Boost which is a super large liner that absorbs a lot, much like a pad but without the plastic liner. These products work well, but if you are a blue jean wearing senior with poor sense of balance and severely arthritic hands it can be a challenge to toilet yourself without falling forward or backward! Catheters are frowned on - they are a huge source of infection because of the in and out movement and close proximity to bad germs. There is such a thing as a suprapubic catheter that is surgically placed through the lower abdominal wall just above the pubic bone. It has less infectious problems. But take a specialist to place it, and can have a raft of it's own problems as I found out in an internet search. Incontinence boils down to accepting it a as a reality and finding which products work best for the individual. Sometimes just medication can help a lot, but Mom's doc didn't want to go down that path with all the other medications she takes because of the possibility of side effects making her worse.

Psychosis in the form of hallucinations comes as part of the Parkinson's package I have been told, and it also comes from the medications that are necessary for the PDr to move about easily. Incontinence is also part of PD. What a dignity thief this disease is!

Has anyone experienced loss of sense of smell and taste as an early sign of PD? I have found it listed as an early symptoms in some of the websites I have researched. Mom experienced it years and years ago. And I have lost a lot of my sense of smell in recent years, which makes me a bit worried that I am next in line for this.

Blessings, Terrie

By susger8 On 2010.01.17 18:22
Yes, apparently loss of the sense of smell is a very early sign of PD. My father lost his sense of smell in his early 60s and was not diagnosed with PD for another 15 years. But I am sure there can be other causes than PD, so try not to worry too much! PD does not usually run in families.

By karolinakitty On 2010.01.17 21:17
Yes sense of smell can be an early symptom, but i wouldn't get too into You having it. there are other reasons for it, but if you are truly concerned, being a nurse, have it checked out. Have you had any head trauma? Mine was losing his sense of smell almost 10 years before PD, due to head trauma.
Looks like you have done great research on this disease, at best, just watch your symptoms. But as susger8 sais, it usually is not genetic, at least at this point.

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