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.
It's a rough journey; for them and us.
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.
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
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...
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.
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!
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 =(
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.
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?
“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.
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
Just a thought.
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.