PICC line plus fall risk disqualifying mom from nursing homes, what to do?

ReallyScaredSon

My 68-year old mom was moved into a memory care facility (MCF) in early February.  She and my dad were slowly starting to adjust to the change.  At this point, her memory was very bad, and she was upset that she had to stay at the MCF, but she was otherwise in great physical health, able to do self-care, eat, walk, recognized her friends and family, etc.  She could have stayed at home, but was having regular episodes of substantial agitation.

About a month into her stay at the MCF, she had a seizure in the morning.  She has no history of epilepsy or seizures.  She was taken to the hospital, where she had another seizure.  She stayed in the hospital for about two weeks, then stayed at a skilled nursing facility for about a week, then back to the MCF.

After being back at the MCF for about a week, she fell.  No one saw her fall, one of the MCF staff came into her room and found her on the floor.  They called 911, checked her for broken bones or fractures, found none, and sent her back to MCF.  Two days later she fell again.  This resulted in another long hospital stay that brings us to today.  (There is some suspicion, though we'll never know, that her falls were actually more seizures.)

At this point, her meds have changed seemingly every day.  She now additionally has a PICC line (for administration of IV antibiotics, for potential neurological Lyme infection - a "Hail Mary pass" for her dementia).  And she continues to be a fall risk; at the hospital, she's had to sleep many nights in the Posey bed, or at least had the restraints put on.

Her current state is similar to someone recovering from a stroke: she's often delirious, rarely coherent, needs to be fed, needs help walking.  Her most recent brain CT scan report says "Bilateral subdural hygromas... Compression of the cerebral hemispheres. Chronic
small vessel disease."  Basically, she has pressure on her brain from the hydromas, and numerous small bleeds.  The best guess is these things were a result of her falls, or even possibly from the seizures.  Basically, she has physical damage to her brain, which would cause anyone cognitive impairment, but she was already cognitively impaired.  And on top of all that, she still has periods of considerable agitation (which is why she had to move into MCF in the first place).

The hospital basically says there is nothing more they can do, and they want her out.  She cannot go back to the MCF.  We called all the nicer/reputable nursing homes in the area, all turned her down except the one she was at a couple months ago.  That place is not bad, but is understaffed (they would call my dad for help when my mom was having issues).  And I can't help but wonder, if all these other places turned her down, they must consider her a liability, which means she's a risk to herself.  In fact, there is no doubt in my mind, she is a risk to herself.

What other options do we have here?  My dad cannot take care of her alone.  I am an only child and live about three hours away (and have a full time job and family of my own).

We know the Lyme disease thing is a very long shot, and would truly be a miracle if the IV antibiotics addressed the dementia.  The more realistic perspectives are: (1) she recovers from the brain bleeds and hygromas, and gets back to where she was before the seizures; or (2) all these things taken together look an awful lot like what I've read about the latest stages of Alzheimer's, and I'm sure everyone here knows how that ends.  But we have to give her the benefit of the doubt, that, with proper care, maybe she can recover a bit.  But we are struggling with how to achieve the best care at this stage.

abc123

Dear ReallySaredSon,, I am so sorry to hear about all that is happening with your mother. You must be exhausted. Hopefully others will come along with some sound advice for you. I am extremely fortunate that my mother is not a fall risk. You and your mother will be in my prayers. Please keep posting to let us know how you are doing. I wish you the best.

Quilting brings calm

I guess I don’t understand why she wouldn’t qualify for a nursing home.  I thought the skilled nursing homes took everyone that needed medical care long term.  Were you possibly  asking about short term rehab inside of the nursing home since you are hoping this treatment will make her better?    My mom had to be able to move about her room unattended before the rehabs inside nursing homes would accept  her for her short term rehab stay,

dayn2nite2

What is the barrier to placement (is MC just refusing to take her back?  Is the PICC line keeping her out of a SNF)?

If it's the PICC line, who made that decision?  And realistically, since she already has what is regarded as a terminal illness, why are we doing a "Hail Mary" here?  Just to say you did?  Where is your father currently?

If the PICC line is the reason given, I would have it removed.  It's really not likely to help.

M1

I would agree with discontinuing the picc line and the IV antibiotics.  Much more likely to hurt than help.

jmlarue

Has anyone suggested that hospice care might be the more compassionate choice of treatment? If the best you can hope for is that your mother may improve "a bit," my question would be: will that hoped-for small improvement give her back some quality of life or merely prolong her suffering? There is nothing good that comes out of repeated falls, repeated seizures, or being restrained either physically or pharmaceutically. It doesn't require any commitment from you and your father to have your mom evaluated for hospice care. Choosing hospice is not giving up - it's an active and thoughtful way to go about providing specialized comfort care so your mom can have a more peaceful existence until her natural end of days. It also provides enormous help for the family with access to social workers, chaplaincy, and taking on much of the daily hands-on care that your mom needs and family can't provide. Something to consider.

ReallyScaredSon

I guess I don’t understand why she wouldn’t qualify for a nursing home...  Were you possibly  asking about short term rehab inside of the nursing home since you are hoping this treatment will make her better?    My mom had to be able to move about her room unattended before the rehabs inside nursing homes would accept  her for her short term rehab stay,

Different facilities gave different reasons.  Some were not licensed to manage a PICC line.  Some flat out would not give a reason.  Some were simply full.  And one looked at her history, and saw that she was in the hospital for aggression prior to moving into the MCF (which is true, she was having episodes of extreme agitation, essentially psychosis, that was too much for my dad alone to manage).  My dad, or in some cases a hospital staff person, did all the talking to these facilities, so I'm not completely sure of their reasons, since I got the info second- or third-hand.

What is the barrier to placement (is MC just refusing to take her back?  Is the PICC line keeping her out of a SNF)?  If it's the PICC line, who made that decision?  And realistically, since she already has what is regarded as a terminal illness, why are we doing a "Hail Mary" here?  Just to say you did?  Where is your father currently?  If the PICC line is the reason given, I would have it removed.  It's really not likely to help.

The MCF is not licensed for skilled nursing.  So the PICC line is an immediate (legal) disqualification for her.  We were lukewarm on that facility anyway.  We picked it without fully vetting it or even touring other places, as my mom's situation escalated extremely rapidly starting in December last year.  (Not to mention, the time my dad brought my mom back from the hospital after her first fall, and she was barely able to walk, and he was struggling to help her.  He asked the nurse if there was a wheelchair available, and all he did was point to a folded one up against the wall - he didn't say anything, didn't offer to help, nothing.)

The story with the PICC line/IV antibiotics is as follows: she did have Lyme disease in 2012.  It was discovered and treated with oral antibiotics.  Even though she was supposedly cured, that time marks the beginning of her earliest dementia/memory symptoms (and she was only 58 years old at the time).  Not only that, but she had a litany of other strange and on-going ailments in the last decade.  It seems to me that the official stance of the medical community is that, if you get a timely course of oral antibiotics, that is enough to fully cure the Lyme disease.  That said, there is an awful lot of anecdotal evidence about "post-treatment Lyme disease", where, for whatever reason, people, even after treatment, continue to have symptoms of Lyme disease (which is a very long list, since a Lyme disease presentation can take on many forms).  Whether or not this is due to an on-going Lyme infection, or some other process that was triggered by Lyme is unknown.

Dementia and memory loss are possible side effects of untreated Lyme or a neurological Lyme infection.  While in the hospital, we wanted mom to have a lumbar puncture, to check for Lyme and a whole bunch of other stuff.  But an LP is unsafe given her hygromas and vessel damage.

So, our perspective is, there is indeed a very small chance that the IV antibiotics will essentially cure her.  But the infectious disease docs we spoke to said it was an acceptable risk tradeoff, i.e. that the risk of IV antibiotics were minimal, and worth taking on the off-chance that she has some tick-born bacteria in her cerebrospinal fluid.  We feel she deserves trying everything.

I said in my original post that, taken as a whole, her symptoms do, based on what I've read, look like late-stage AD.  That is true.  But, everything I've read suggests that the transition from one stage to the next isn't a step function, but gradual.  It appears to us, she had a radical/dramatic change in late December, and then again starting with the seizures.

And I will say, she is making some progress, albeit very slowly.  I visited her in the hospital for three days a couple weeks ago.  Two of those days, she didn't open her eyes, or say more than one word at a time.  But the day before I left, she opened her eyes, was smiling, made a couple lucid phrases.  Now, she has her eyes open far more often, has more lucid moments, no longer has a catheter, can walk (almost unassisted), and is starting to feed herself.  My paternal grandma had a stroke a while ago, and my dad says that her recovery looked just like what my mom is going through now.

Quilting brings calm

It is true that some forms of dementia, such as Alzheimer’s, have a long gradual decline.  Others have a faster decline. Vascular dementia is known for a stair-step ( or falling off a cliff) decline where the capabilities change drastically suddenly.   It’s associated with strokes.   It can sometimes have a gradual decline also.  

https://www.dementiacarecentral.com/aboutdementia/vascular/

The doctors should be able to tell you whether she had a stroke using the scans they’ve already done. Especially if it’s the hemorrhagic kind ( bleeding).  Your original post  does mention small bleeds. 

You may have to have her moved to a geriatric psych unit/ facility to get the aggression under control with medication in order to get her accepted to either a skilled nursing or MC facility even after the PICC line is removed.  I’m assuming that it will be removed after the antibiotic treatment is done?  How long does that take? 

eaglemom

You certainly have explained yourself well. I wish I had some answers for you. Something you can do is to call the ALZ Helpline 800-272-3900 and ask to speak with a care consultant. They might be able to specifically help to point you in a direction.

Let us know what you do find out.

eagle

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mommyandme (m&m)

Really sorry for these struggles! 

Hate this for you! 

JDancer

Would she qualify for a short rehab stay? If she's falling, it certainly sounds like she would benefit from physical therapy. The hospital should have staff available to help with discharge planning- case managers, social workers, etc. The health care system care be difficult to navigate, i hope you find the help you need

Lafmore

I'm so sorry you're having this struggle. I too had problems finding something appropriate for my sister who has pretty advanced Alzheimer's and had a history of falling- hers were not seizure related. She is still mobile, but needs help with every aspect of daily living. What I found, and also found that the state will pay for it once her retirement money is gone, was an adult family home who specialize in dementia clients. There are only 5 clients there and two staff on duty all time- except one at night, and the staff live there at the home as well, so more help is available if needed. They have been absolutely wonderful. They monitor the residents frequently- and provide an emergency button. My sister did have a fall there and since it's small enough, they actually heard her fall and were there in moments to help. So, if you haven't already checked, I'd look into adult family homes. Our state provides a listing of which homes accept state funding- which might be prudent unless you're sure your private funding or insurance will cover for the remainder of her life. I hope you're able to find something where she can be as safe and comfortable as possible.