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My father moved into our home at the end of June 2018, just a bit over a month ago. He was very unhappy with his previous living arrangements and felt he was not getting the support he needs. Dad is 87 years old and has stage four Parkinson’s Disease. He uses a walker, sometimes a wheelchair if he is having a very bad day. He is also dealing with anxiety, sometimes quite overwhelming for him on an almost daily basis. He is on levodopa/carbidopa 5 times a day with a CR tablet at night. He is also on 50 mg of quitanapine and lorazepam 2 mg 2 times a day as required to ease the anxiety. He has wanted to be taken to the ER at least once a week. We took him the first time but his symptoms seem to disappear as soon as a decision is made to go, so of course, once we get there the doctor has nothing to address. Twice now, when I try to figure out what “I feel crappy” means, nausea? headache? pain?, he says he doesn’t know, if I ask what he would like the ER doctor to help with, he tells me to “read my POA” or “they can just kill me”. I ask him if he would like some acetaminophen or lorazepam when he obviously anxious. He gets angry with me when we tell him that the ER doctor needs to know more than “I feel crappy” so he/she knows how to help, and that the ER doctor won’t kill him. I’m not sure how to deal with this sort of behaviour to help ease his physical and mental pain. Any advice would be so welcome.

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I hate to say this, but that is the way it is here, every day it seems, which has made me feel like if you can't tell me other than "I hurt" or "I'm sick all over" there is nothing I can do to help, as I have yet to develop mind reading skills, and I don't think ER has those skills either.


It's a rough journey; for them and us.
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Is there a hospital that he does not like? If so, tell him that his regular (favorite) hospital is under lock down with too many patients, and everybody is being referred to the hospital he does not like.
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Do you think it would help if the ER doctor told your father that he didn't need to go to the hospital and discussed when it would be appropriate? My husband was the opposite. He was terrified of hospitals and wanted to avoid them at all costs. When I was working, we would end up waiting until after midnight, and I wouldn't get home until a few hours later, so that it was very difficult to work the next day. But I think both your father and my husband (in same age range) had the same motivation: to keep themselves safe and get the attention and care that they need. Your father has faith in the medical profession and believes he needs to be saved and taken seriously. Do you think that is correct?
It seems as though your father uses his emotion to judge whether a situation is an "emergency." A situation can definitely be an emergency--but not necessarily a medical emergency. I think you might make a little progress by discussing how best to use the emergency room when he is feeling no pressure. You can start by reminding him that he moved in because he wanted more care, and tell him that you are determined to care for him in the best way possible.
Because of his health conditions and medicines, you could discuss what would be the proper reason to go to the ER. And discuss these with the ER doctor the next time you visit. Perhaps then you could remind your dad that the doctor is an authority on health as well as illness, and that he is safest when he follows the doctor's advice (which, hopefully, will include guidelines of when he has no need of the hospital.)
Then when your father has an overwhelming need to go to the ER, you could remind him that he is "Ok." It seems that he only thinks of the ER benefits--and not the dangers of hospital infections, treatments that prolong pain and suffering. Does he want to die in the hospital?
Also these visits are placing a strain on your relationship. Your dad (and my husband) probably don't care as much--thinking that you are healthy and can afford to take care of them. I would argue that you are both in this together.
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PracticePeace Aug 2018
I think you’ve hit the nail on the head. I’ll have to think about how to word a conversation with Dad and posy, with the ER doctor as well. Sounds like a very sensitive approach. Thank you! My Dad and I did talk to his GP about nursing services but unfortunately, Dad doesn’t qualify for the services here. He could have personal care support but he preferred to leave that as is with me assisting him. There is still the choice of paying full cost for a nurse to visit but Dad would have to pay for that, and he’s hesitant. I may see if he wants to reconsider if, after having a heart-to-heart, it’s still an ongoing concern. It’s so wonderful to “talk” with people with so much experience and insight.
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My father was the same too. At first it was a legitimate issue but he had surgery for that but by then he was hooked on the attention an ER visit generated. He an me ragged for about 2 years before I had enough and quit the ER taxi service cold. My situation was different because I did not live with him. He would call me at work saying he felt 'awful' and needed to go to the ER. The most I would do is leave work, pick him up and drop him at the door of the ER and return to work. He cried wolf so many times that I was totally desensitized to ER trips. Then he would try and go on the weekend for something minor because the doctor's office was not open. There was no way had 6 hours to waste sitting around and ER while he had a leaky catheter changed. Often he would get himself to the ER (he called so often the local town cops would even take him in a police car) but expect me to bring him home. I had to stop answering the phone if I saw it was the hospital. I would only answer when I was done with everything I HAD to get done because I knew the rest of my day would be lost.

He is in AL now. He still runs to the ER quite often...twice a month if not more. I never go unless he is being sent to 'rehab' and needs a change of clothing. Most of his trips are just because he wants attention. They never find anything seriously wrong....other than old age
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Judysai422 Sep 2018
My mom was the same. We had a heart 2 heart talk with nurse as AL. They are now going to do a mini triage before sending her to ER to determine what she really wants because the ER visit is so disturbing to her. Fingers crossed this helps. You might try the same approach.
Oh, BTW, the last time she went it was because she wanted some Tylenol burned did not say that. The ER nurse told her she was going to have to wait way longer for Tylenol in ER than in AL cuz they had to run a bunch of tests first...
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I feel your pain! Before my wife had a major stroke at the end of October 2017, she had gone to the ER in excess of 65 times between Jan. 01, 2017 and October 30th 2017. Of these visits, she was admitted 3 times and kept for observation 3 times.

She has been in a NH since with several hospital stays of up to 5 weeks. About 2 weeks ago, she started asking the facility to send her to the ER. She is now asking daily, and cries and raises a fit because they can find no reason to send her. It's a part of her bipolar disorder and a desire to be the center of attention.

I am so glad that it is up to the facility to decide whether or not she needs to go to the ER and not on me. I am in no hurry fro her to come home but I do see her daily, usually about 5 hours.
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PracticePeace Aug 2018
I can imagine how stressful that was for you! I try to be as aware of my Dad’s “situation “ as possible, with it changing so often. I would feel so awful if I thought a trip tp ER was “unnecessary “ and turned out to be wrong. The saddest thing about it, I think, is knowing that to my Dad, the emergency is real and in saying no, he thinks I don’t care.
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I share your frustration. I'm always getting "I just feel crummy" from Mom, with no specifics.... :( Very hard to handle....
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An ER is for emergency medicine only. You can call 9-1-1 and the EMT's will ask him "Do you want or need to be taken to the Emergency Room?" You can tell him "Dad, you will have to wait 28 hours to be seen by a doctor - sometimes longer." And he's on generic Seroquel. Plus calling 9-1-1 frequently, they're going to wonder.
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I'm envious of those of you who have great relationships with your doctor's/doctor's office. In my area, if someone called an M.D. office with vague complaints, the staff would not assess the caller. Instead the staff would immediately tell the person to go to the ER. To avoid potential lawsuits. Also, (hate to be a wet blanket) but those in the US may end up paying out of pocket for certain home health services if there's no "medical necessity".
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It's a tough spot. My mil said she was always sick so by ambulance she would go. Of course the ER couldn't treat her for anything since there was nothing they could treat. Anxiety did this to her every time. Now since living here, she has only gone (knock on wood) to the ER once. Diagnosed and treated for a uti. She still has anxiety attacks that last for days, unfortunately.
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Papa’s Doctor put him on a half of a Xanax during the afternoon when he gets anxious and agitated. That seems to do the trick so far. Since it’s only half a tab, it doesn’t make him too sleepy. Just another suggestion.
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My mom (88/dementia) called EMT's one day and they took her to the ER - I did not go. I've heard it all before...waited until they called me to tell me what was going on - however by the time that happened mom had me on the 'no contact' list...long story short - once it was determined that she had no real medical issues - only mental issues - the verdict was to discharge her but I'd have to find her a place to live - no going back to her apartment to live alone under any circumstances!

Fast forward: She called one other time to go to the hospital as she thought when she awoke from sleeping and her arm felt 'numb' that she was having a heart attack/stroke and insisted on going.

Now I tell her that she should call her doctor's office FIRST. They have a doc on call - maybe he can talk her down? Since I gave her that advice she hasn't dialed 911 - at least not so far.

Sometimes you may have to just allow him to call his doctor's office and have the person on call chat with him a bit to discern 1)If there's really anything medically wrong or 2)If it's just, well the other issues - maybe they can say something to help calm your LO. In any case those ER visits are so often not helpful or useful - and many hours are spent waiting as the staff there only takes 'emergencies' (Bleeding, Heart Attacks, unconscious people)...everyone else waits...and waits...and waits...once they assess that you're not in immediate danger you're given the 'waiting room status' - sometimes not always the best way to handle it..but they have their pocedures/processes so they can take the true emergencies. Best to you for next time!
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I think You need to look into some cannabis.
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Ask his doctor for Fluoxetine! The words “I love you dad, I’m so sorry you feel that way” then change the subject.
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YsLadyMN Aug 2018
not sure what Fluoxetine is, but the validation and statement of love definately help... my Mom needs a frequent visitor card at the ER. Thankfully my dad's retirement health insurance made is a less painful choice to induldge with the non-specific complaints of feeling too awful to do anything. It's heart breaking.
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Yes, this pretty much summarizes my dad's days at times; his security sense going to the ER might be associated with the aggitation and anxiety more so than actual medical condition.

At this stage, Parkinsons along with the mental/cognitive decline goes hand in hand. Consult with his Neurologist/ PCP as well as geriatrics doctor to better address.

Hang in there, I understand the anxiety & aggitation is more debilitating than the actual movement issues; nothing compares to the mind playing tricks and our love ones not able to move because of Parkinsons is nothing (not a big thing in the scheme of things). Stay strong for your dad =(
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PracticePeace Aug 2018
I agree, it’s much more difficult for me to deal with the emotional side of caregiving than anything else. It’s definitely fear that drives his anxiety. Thanks for the vote of support:) It’s great to know there are others out there who understand.
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You & only you decide whether a hospital visit is necessary ...my mother can ask everyday to go because her back hurts or whatever...she had back problems all her life which she refused to fix anything when she was younger & healthier. I don’t feel a hospital visit is always best with all germs around & can pick up anything w compromised immune system. Unless it’s emergency like bleeding everywhere or fell & can’t get up...you get picture?
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Yes, dementia does frequently will arise along with Parkinson's. There are about/over 150 diagnoses causing dementia type symptoms. Some potentially reversable such as uti, dehydration, etc. Even medication side affects. And with the elderly often antipsychotic medications that should not be given to those with various types of dementia, especially because they can't clear the meds quickly enough and they retain too much so their being dosed at "a higher" amount than intended. Further, at some stage in the dementia the patient will not be able to describe whether their source of pain or discomfort is from constipation or infection or simply hunger or the need to urinate . The suggestions of nurse visits are ok but they need daily frequency, once a week is too infrequent for the Caregivers to understand what is really the causes. A geriatrician is my number one recommendation to check on all medications And If the dementias are lurking. Bless you, be patient as you care-partner. Also, do a search on the internet for PAINAD . This will show a pdf from dementiapatways on assessing pain when someone isn't able to really tell you either incapably or untruthfully.
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I am not sure how "with it" your father is. My mom is pretty spry still, but we have almost monthly or bi monthly "emergency" situations. The first three times she ended up going and quickly learned that it cost her money to ride in an ambulance, she now insists she MUST go, but I must drive her since she cannot afford an ambulance ride. Like your father, once we get going she is immediately better. She is on a very mild anti anxiety med and her doctor won't prescribe anything stronger because she is elderly? Whatever that means. I am always afraid to say no to taking her, but sitting in and ER for three hours when I have a handicapped son at home who also needs my attention is irritating when there never turns out to be a problem. Mom's biggest problem is her crying wolf for so many years that it is hard to tell now if she is actually sick.
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He may qualify for Hospice if so he/you would have a Nurse that would come to the house to see him once a week. You would also have a CNA that would see him a few times a week. This might make him feel that there are more people tending to him and they are coming to him. Along with that you can call Hospice 24/7 with any questions or concerns and if needed they will send a nurse out.
If this is not an option you want to take at this time keep it in mind for later.
It is possible that he is stressed about the move. Do not know if it was a local move or a long distance move but any change can cause anxiety. If he moved away from friends and an area he knew well this may be causing more stress.
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NicoleLR77 Aug 2018
Or if he doesn’t qualify for hospice or he is not ready for that. Ask the Dr to order home care. Services include nursing, Physical and occupational therapy, home health aid, and medical social worker.
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i took my mom to urgent care sometimes .do have to pay the co payment up front but it will relieve going to er well i keep saying give him melatonin it will help get him calm walmart sells them a purple top ,,they sell them in vitamin section give him a pill or 2 tell him try that 1st if not take him to urgent care .good luck
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I feel crappy or *sh*tty* are the daily complaints my husband gives me or any doctor. Getting him to get specific is very difficult.
I go through a list of words to ask him each day.
Dizzy?
Lightheaded?
Weak?
Nausea?
Confused?
You get the drill.
In the ER yesterday he kept saying crappy and the doctors kept trying to narrow it down.
I think a visiting nurse would be a great idea too. It let's them tell someone daily how they are feeling and sometimes just telling someone else helps?
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“Crappy” is nonspecific, so could he use a visual to help him narrow down his complaints?
“Nauseous, dizzy, hurting (then finding site of pain), __________ache, can’t- (pee, poop, take a deep breath, swallow, etc). Pictures to illustrate from the internet.
Advanced Parkinson’s does produce a lot of intermittent stuff that waxes and wains.
Weekly nurses’ visits sound like a really good idea too, and hopefully you’ll get help from the neuro in November.
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I can empathise with this. My Father is now in care facility but same as yours at home. Convinced he had a dis ease that could not be found. Wanting to go to emergency at hospital. Wanting me to call doc cause he is " ill".
Mad with me when I said more information required. His doctor was sure it was linked to anxiety and attention seeking to get me to his home cause he was scared. This does not happen now as he sees medical staff in care facility.
Maybe the nurse coming in will be best solution. Good Luck. Know its not easy and you cannot win
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You’re welcome, “Double P”. 😁. When my husband came home from 4 months in rehab, we had a visiting nurse, one RN and one LPN who alternated weeks. Since Hubby has heart issues, I was over the Moon to have them come. When their 3 months were up, we all cried! It was all arranged by the rehab hospital through his Medicare, so his GP’s office could also approve it for you. The world runs on paperwork so you and they will have to fill out forms. They’re usually provided by the VNA. Ours even ordered incontinence supplies for us. Boy I still miss them! Let us know how it works out. Between my mom and my husband, I was at the ER so much I got to know all the staff One time the doctor looked at me and said “Don’t I know you?” We had a good laugh over that one!
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He hasn’t been but his GP is becoming aware (lots of phone calls to him as well), and he has an appointment with a new neurologist in November. I know we’re fortunate to get an appointment so quickly, although to Dad it seems an eternity. The neurologist is part of a Parkinson’s Team, so I’m certain the assessment is coming.
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Ativan wasn't cutting it with my mom either for her agitation and anxiety. Xanax (Alprazolam) is doing a much better job and she's much more calm and relaxed now.

Just a thought.
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PracticePeace Aug 2018
Thank you for the suggestion. I’ll raise it with the doctor.
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I knew my mom was ready for a facility when she called 911 three times in one week, once because she had an accident in her bed. When she was hospitalized for a raging urinary tract infection, her behavior was so off the wall, they evaluated her and determined she could no longer live alone.

I’m wondering if it wouldn’t help to have a visiting nurse come by once a week or so. She could do a cursory exam of Dad and pronounce him “fine”. He could share his “feeling crappy” with her instead of you and the ER. He may need to be tested for a UTI although there are usually no symptoms.

Was Dad previously in a facility? If so, he was not happy with the care and not enough attention? He’s had a change of scenery and caregivers but maybe not of attitude. His protestations may be a bid for attention and this is why you should have him evaluated for dementia. My father-in-law had PD and after about 5 years also had dementia. It shouldn’t be difficult to get him to the doctor as he knows it will be all about him there.
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PracticePeace Aug 2018
Thank you for your suggestion. It sounds like a great idea. I’ll speak to Dad’s GP about having a nurse come by weekly. It may help him to feel safer knowing there’s a professional there for him, more often than his doctors can be, and he wouldn’t need to go anywhere either, which is definitely a lot easier for him.
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Dementia goes along with Parkinson's. Has he been evaluated for it?
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