Symptoms of end-stage Parkinson's? When should hospice step in?

[zelda2012]

Hi there, I work at an ALF and I have a resident who has pretty severe Parkinson's. 87 years old, has had pneumonia twice in the past 3 months, 95 lbs soaking wet, can't do any of her ADL's besides feed herself and even then we usually have to step in and feed her. She can still get up and walk (or shuffle, rather) on her own, when the mood strikes her. Sleeps all the time. She's actually not appropriate for our ALF as we only have a standard license, but that's another story..

She was hospitalized a few weeks ago with pneumonia, but has been doing better since returning to our facility. Today, she was very lethargic, difficult to rouse, resting tremors seemed worse. Rubs in bilat lungs, sometimes sounding like she had phlegm caught in her throat. Percussed her back, tried to get her to cough up secretions but she couldn't. V/S and SpO2 WNL. Mainly, she was just zonked out all day. No apparent respiratory distress. Her husband is freaking out.. I don't think her neurologist or primary MD has been completely honest as to what to expect with Parkinson's Disease and the progression, or the complications (recurrent pneumonia being one). As of the time I left work today we were still waiting to hear back from her primary and hopefully get an order for at least a CXR.

She is a full code, which freaks me out. I can't imagine doing CPR on this tiny lady.. her ribs would crack in half. Her primary MD ordered physical therapy for her last week.. I guess to palliate her husband. Surely her doc knows no amount of PT will help her get better. She also saw her neurologist last week, who merely bumped up her Aricept dosage. You'd think as a physician that deals with this disease all the time, they would notice her decline and speak to her husband about it..

I know only MD's can order a hospice consult, but would I be out of line to suggest this to her doctor? Honestly, to me she looks like she is dying already, albeit slowly. I feel, at least if hospice is a no-go, she should be made a DNR.

[Raviepoo]

To me it sounds as if she would qualify, if her MD ordered an eval and treat AND her husband agreed to hospice services. None of it makes any difference without the husband's buy in. He is in full control. An army of MDs, MSWs and RNs can try to educate him. If he wants "everything done" you may have to code her in the end. It's sad, but some people only learn by going through it.

[tyvin, BSN, RN]

It is more than likely she has DLB or PDD. If her Parkinson's is diagnosed and kosher she should go for another assessment to establish one or the other which could put her in a more eligible state when the time comes for hospice. Does she have a neurologist?

What is her Diagnosis for the aricept? It appears from your description and the length of time she's had the disease that she has more going than the Parkinsons. I know that aricept is prescribed to parkinson's patients, but to really nail it down that it's helping cognition, you need a more refined Dx.

Who does the medication reviews? Side effects from aricept are many, including drowsiness and weight loss. Is the benefit from the medication outweighing the side effects...

I can't understand why people who should be in LTC stay in ALFs. I know it sounds much nicer to be in an ALF, but doesn't that make the resident ineligible for more services?

Someone who knows their stuff about his could you please fill me in...

As for her husband, there is always legal action if his decisions are in fact, not to the benefit of his wife, and in fact causing harm.

Thank you,

[SickofLBD]

My mom was diagnosed with Parkinson's disease at Cleveland clinic in August of 2004. She had been falling for sometime & was being treated for some muscle disease. She was diagnosed with the kind that her brain did not trigger her left side to move. More of the stiffness kind than the tremors. In Nov. 2014 my dad past from Alzheimer's where my mother had been the primary caregiver. Exactly one week after his services were over (11/14/14) she started hallucinating. After spending a week at hospice facility to regulate her medications we were told she is in the final stages. She walked with her walker into the ambulance to go. Today, she barely speaks, eats soft foods, can't walk, ,incontinence, barely opens eyes, & her legs move nonstop without being sedated with phenobarbital. Is this the end,how long does have, or is it because she is not on the right meds? She takes Stalevo primarily, phenobarbital for sedation a stool softener, anxiety medicine for agitation& generic for nexium. What can I do as her primary care giver? We have her at home. Afraid I am not doing enough:(

[SickofLBD]

My mom was diagnosed with Parkinson's disease at Cleveland clinic in August of 2004. She had been falling for sometime & was being treated for some muscle disease. She was diagnosed with the kind that her brain did not trigger her left side to move. More of the stiffness kind than the tremors. In Nov. 2014 my dad past from Alzheimer's where my mother had been the primary caregiver. Exactly one week after his services were over (11/14/14) she started hallucinating. After doctoring with neurologist & psychiatrist her health has deteriorated over the last year and 11 months. Two weeks ago she spent a week at hospice facility to regulate her medications we were told she is in the final stages. She walked with her walker into the ambulance to go. Today, she barely speaks, eats soft foods, can't walk, ,incontinence, barely opens eyes, & her legs move nonstop without being sedated with phenobarbital. Is this the end,how long does have, or is it because she is not on the right meds? She takes Stalevo primarily, phenobarbital for sedation a stool softener, anxiety medicine for agitation& generic for nexium. What can I do as her primary care giver? We have her at home. Afraid I am not doing enough:( help!!!