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He was trying to get to the bathroom and headed for the closet. My partner got up during the night and needed to use the bathroom. He became disorientated and headed the wrong way and cut his fingers on the rough wall of the closet. He tried to turn around and got out of the closet and fell AGAIN. He is becoming more disorientated and hallucinating more and more. He still knows who I am and is very appreciative about my being here with him. I would never be anywhere else. I will hate the day when he no longer knows who I am. I am afraid to let the nurse know he fell again. I don't want them to force me to place him in outside care. Can they do that? I want him home until the end. If need be I will hire outside help, but we both agreed that he would never go to "the Home". Can they make me send him there?

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Before my father passed away, he was having to get up at night yo go yo the bathroom and had some episodes go almost falling due to balance issues. When there are underlying balance issues they are worse in the dark. We placed low level night lights in several strategic places and they helped a lot and did not interfere with sleeping. Also told dad to make sure he had his balance sitting at the edge of the bed before he stood up.
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Sendme2help- to follow up on your medication point- there are some drugs that a ER would normally give to a person that would be extremely bad for a person with Parkinsons. I work with Parkinsons a lot and there is a special list of drugs that should never be given to them. Caregivers need to have a copy of this list if they take a person to the ER. Moondance- have no idea who you are talking to but I understand- I like to know a situation before offering advice- info on a posting has a chance to misused in the wrong context.
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NO~contact me personally for advice. I choose not to post professional advice here.
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Thank you ALL of you for your tremendous suggestions. Reading everything here and all your answers, I have already called the nurse from home care and she has not called me back yet. What if it was an emergency. Of course, I would then call 911. The Home Health is a real let down for me. I am calling tomorrow to start investigating a care giver. I DO NOT want him living anywhere but at home. It would kill him for sure. And neither of us wants to be separated. We are just not ready for that yet.
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Another thing, with Parkinson's patients, I am finding it miraculous how they bounce back again and again! It is truly encouraging to be a part of this, watching the brave be really brave!
Have you seen the blog by John Schiappi here on aging care.com?
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There is a list called the Beers List of medications that the elderly should not take, check this with his doctor and pharmacist.
Be sure to plan ahead with the medical power of attorney and other legal documents that will allow you to act on his behalf, unless he has children who will do this. With the new HIPPA laws, the doctors cannot tell you anything.
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I don't tell my Mom about appt or visitors until just before. If I tell her she will be up in the middle of the night. I 've told her no getting up in the dark works most of the time. She has a hard time telling time even with the numbers 2 in high. She can get the first # so I tell her no getting up until it says 8. She gets up for bathroom visits. Sometimes it w
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A bedside commode could help a LOT!
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His doctor can definitely refuse to release him to come home if he feels either he or you would be in danger. My partner was admitted to the emergency room after having hallucinations for one night and the next day. After anything medical was ruled out they sent him to the psychiatric hospital for an evaluation and after 2 weeks he was sent, by ambulance to a care facility. The doctor said it was out of my hands, and I had no say in it anymore. He is in a facility about 50 miles away in a big city where I can only get to see him once a month. We are both very unhappy about it, but he appears to be getting decent care with few exceptions. It's heartbreaking for me, so I sympathize with you.
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I agree with the above, it could be a side effect from a medication. You might also try to limit the amount of fluid he intakes a couple of hours before bedtime. Speak with the doctor about these symptoms, it could be something medical.
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My mom's nighttime disorientation seems to occur less often and less severely now that we stopped giving her tylenol PM before bed. Someone in elder care alerted me to studies which show that this can be a problem for older people. agingbraincare/uploads/products/ACB_scale_-_legal_size.pdf
Be sure to read the bottom of the page where it tells how each category is determined. The PM ingredient is on this list as possibly causing delirium, so I quit giving it to my mom and it has helped. The doctor recommended melatonin, so we are trying that now.
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it could many things that caused his disorientation, but by all means you should advise the nurse of his falling. it could be something else that caused that as mentioned in one of the posts above. maybe he could ring a little bell when he has to get up, or remind him to call you and you can help, that is what my dad did (for awhile anyhow). You might want to enlist some "night time" help so they can help him IF he wakes in the middle of the night to use the bathroom.
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Good, good suggestions. Sometimes disorientation isn't related to age. My brother (in his twenties) peed in the corner of his room several times while sleepwalking- of course that was in his bar-going days....................................
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Early on in my moms diagnosis my father didn't want her getting out of bed by herself at night. He is hard of hearing so without hearing aids in he would not hear her. He decided to tie a ribbon on both their wrists so he knew when she was getting out of bed. This actually worked for quite some time. As things progressed we just put the commode beside the bed. I would always put a little water and a squirt of bathroom cleaner in the pot to keep it fresh smelling.
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I know you are only trying to protect him And you want to keep him with you, But maybe it would be best if you alert the nurse to his behavior,, so they can give him the help he needs. He may hurt himself wandering around, fall down the steps or something. After awhile, you can only do so much, it is out of your hands. I'm sorry you are going through this.
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oregangirl, it may be something as simple as getting up too fast and his blood pressure dropped or maybe in the very early hours his blood sugar was too low.They can not force him out of the home as long as proper care is being provided. By all means tell the nurse and then get busy with some sandpaper on that rough door. I know you live far outso you can even use steel wool or those name brand scouring pads. Make sure you have enough night lights so he can see what he is doing or get him a urinal or comode.
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Oregongirl, you may take comfort in knowing that if it is Lewy Body Dementia or Parkinson's Disease with Dementia that he has, he may continue to recognize you and others to the very end. That is not usually a part of the brain that is damaged in those diseases.

I recall a night when my husband got up, opened a closet door, and stood there peeing. Yup, a bit disoriented I'd say. This is not unusual with dementia.

I really think you should discuss all of his medical symptoms with his medical providers. Falling is common with his diseases. It isn't your fault, and it is not the fault of being at home. But his medical providers may be able to provide some help if they know the full range of symptoms.

Good luck to you. I hope you will be able to keep him home. I think Garden Artist is right about starting to investigate what in-home care help is available, so it won't be an emergency search when it is desperately needed.
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Why would you be afraid to notify a nurse of an additional fall? First, they can't force you to place him in a facility for falling. Second, it may show a pattern which they can investigate. Has any medical workup been done to try to identify the falling episodes?

You've twice mentioned disorientation. That could be from medicine, even from stress, from ear or sinus infections....these are worth checking out.

What about the hallucinations? W/o reading your other posts, I'm assuming that these have occurred in the past and some medical reason has been identified for them?

I don't know how they can force you into a facility placement unless they apply for conservatorship, but given the challenge for medical practices of maximizing their time and profit, I doubt if they would be inclined to do that. They might contact APS though, but I'm wondering if you are concerned there's more happening beyond the falls which could trigger intervention.

In the meantime, if you are legitimately concerned about this, start identifying in home care solutions to demonstrate that you're prepared to care for him at home, barring unforeseen circumstances.
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