AboutMargot RN BScN GNC Expertise Please feel free to ask anything, but the more specific you are, the easier it is for me. Please share as many details as you are comfortable doing. I do check my Emails daily Monday through Friday so you should receive an answer within 24 hours on most business days. Thanks.
Experience GERONTOLOGY (NURSING ISSUES RELATED TO THE ELDERY) I have 15+ years experience working with the elderly. I would be pleased to offer any assistance I can. My areas of expertise include: Gerontology / Geriatrics, Long Term Care, Community Nursing, Palliative Care, Private Nursing Services, Intermediate / Extended Care. I also have a personal interest in Homeopathic and Eastern Medicine. If I can not answer your question I'll do my best to direct you to an appropriate resource. Thank you. Experience in the area 20 years of Long Term Care and Community Nursing, specialising in Geriatrics, Gerontology and PalliativeCare.
Education/Credentials Registered Nurse , Certified Gerontological Nurse, Bachelor of Science in Nursing
Question QUESTION: My father-in-law has Parkinson's and seems to be entering the final stages. He is completely bed-ridden, totally incontinent and unable to care for himself at all. My mother-in-law is his constant care-taker. I have read that in the end stages, PD victims become quiet, and loose the ability to speak. Unfortunately, my father in law has the opposite problem--he screams. ALL THE TIME. He has severe dementia and rarely knows where he is or what is going on. If he can't hear people or my mother-in-law isn't right there next to him (like when she's trying to sleep) he shrieks. It will go on for hours and as you can imagine, is horrible to witness. My poor mother-in-law is beside herself, never gets ANY sleep (he screams all night most nights) Have you ever heard of this? The screaming or the not sleeping? What can be done? Is this end-stage? We're all afraid he's going to have a massive stroke or heart attack during one of these fits or my mom-in-law will. Anything that would help her out would be great.
Thanks.
Jennifer
ANSWER: Hello Jennifer and thanks for writing,
I'm so sorry to hear about your FIL's struggle with PD and Dementia, he is obviously having a very difficult experience.
We did have one patient years ago who had similar issues, she would scream for hours on end (she was in the later stages Dementia as well). We tried many different medications but to be honest nothing really helped, we could reduce her over-all agitation, but the screaming continued despite all of our efforts. We had several different physicians assess her and make suggestions (mostly pharmaceutical), but not much changed as I stated. We did notice that she seemed to go in 36-hr cycles where she would be ok for 12 hrs, then the agitation would build over the net 12 hours then she'd scream almost non-stop for the remaining 12 hours.
There was one other gentleman who was in early Dementia and would yell if alone so we needed to give him almost around the cock one-on-one attention. Eventually we had a schedule for him with family, volunteers and staff so we'd have someone available to be with him when he started yelling. This was more behavioral than the lady with late stage Dementia who had no conscious control of her creaming.
I would advise you speak to the physician about all possible treatment options and also look into respite relief for your MIL so she can at least get a break. Maybe your FIL could go to a respite bed in a facility for regular breaks, and maybe the community healthcare can provide caregivers to spend a few hours in the house so your MIL can at least get out an have a break. I do worry that she will burn out and not be able to care for him due to exhaustion. You should look into any and all available services in the community which can offer some respite relief for your MIL. It may also help to have a family meeting to discuss how you can all support her through this very difficult time.
I hope this helps and I wish you all the best,
Margot
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QUESTION: I appreciate your quick response, thank you. Yes, my MIL does have some in-home respite, but not during the night. She can get the shopping done, but can't get any sleep. Its very sad. And yes, I agree, he does seem to go on cycles, but they seem to be for days at a time, then he'll quiet down for a day or so then start over.
I agree she is going to burn out, but she refuses to put him in a home of any kind, (I think she feels it would be disloyal to him) and as that is her choice, we can't do much. We all try to help as we can, and unfortunately, FIL tends to get very violent with anyone but her and even then, sometimes he'll hit or bite. Its just one of those rock-and-hard place situations. I am relieved just to hear that other people have dealt with this. Maybe someone out there will read this and find some relief in it too.
My next question would be this: His doctors keep trying to put him on either Parkinson's meds that deal with dopamine or on psyche drugs that have side-affects that worsen his behavior. I was wondering if maybe the path that might help would be sedation. Is there a difference between the Parkinson's/psyche drugs and say, good, old-fashioned sleeping pills? I know that many meds do not work the way they are supposed to because of the disruption in brain activity in PD patients. Are we risking that sleeping meds would back-fire and make him act worse? What about something like chloryl hydrate?
Also, reading your response brings the question about the cause of this screaming. You say that the lady who did the same thing had "no conscious control" of the screaming. Is that the case, it's just a random behavior or do you think there is a source? If we found that it was something specific irritating him, we might be able to help him. But if its just screaming for screaming's sake, then there's no point wracking our brains trying to analyze it. We just have to bear it.
Thanks again, its so nice to talk to someone that has experience with this!
Jennifer
Answer Hi again Jennifer,
I think it would be worth trying to see if there is an apparent cause or trigger for your FIL's outbursts - obviously there may be no "cause", but it can't hurt to put a little effort into investigating any apparent patterns. You should start by tracking his sleep - use a graph where you chart when he is awake but calm, when he's agitated, and when he's sleeping (if you want I can email you a common Sleep Chart we often use in senior's residences).
As for the medications, yes you should try to find one that will help your FIL be less agitated; not only will this help your MIL and other family get some peace, but it would also increase your FIL's quality of life - obviously no one enjoys being agitated and yelling. I would start by speaking to his GP, you might also speak to a Pharmacist for a second opinion (if you can find a Geriatric Pharmacist that would be the best) - you might also look into Geriatric mental health services in your area, they can be an excellent resource and may have some good ideas about effective medications.
