Questions on falls, aggitation/combativness, Seroquel, and moving to SNF

WhatNow?

I added additional background after questions, so you didn't have to read through it all to get to what I was asking

I guess here are what I'm looking for advice on:

1. When a person won't use a wheelchair or doesn't know how to use a walker how do you keep them from falling?  What would should I ask that the memory care facility to do or what should I look for them to implement?

2. How long does it take Seroquel to be effective for agitation in Alzheimer's, I'm sure they should give it longer than 4 days to see if it helps?  Have other's had good results with it, helping to calm their LO and be able to allow them to allow care?

3. What are thoughts on having her do an inpatient geriatric stay? 

4. Thoughts on moving her from her MC to the SNF, with her somewhat mobile still (with or without in-patient geriatric stay)

Mom is probably currently late stage 6 and in a MC facility.  She still talks, but I don't really understand what she is attempting to say.  She has no attention span and it impacts her train of thought and relaying information.  I don't know if she always understands what I'm saying.  At times she thinks I'm her sister and at other times she knows I'm her daughter.  She has been having a lot more trouble walking within the last couple of months.  She shuffles slower than a turtles pace.  She doesn't use a wheelchair or a walker.  According to the staff they have transported her a few times to meals and such using a wheelchair, but they say she won't always get in it and doesn't like it. I doubt she would physically/mentally be able to use a walker at this point, but I did find one so I'm going to attempt it. I asked them about getting a wheelchair for mom and they wanted us to have 24 hour companions with her if we did that because they were afraid she wouldn't use it properly and it would cause more of a fall risk.  I guess I do see their point there.

She also has always been reluctant to allowing the caregivers give her care.  Now because she is urine incontinent this is becoming a real challenge because she won't let staff get her out of her wet pull-ups and pants. When they attempt to provide her care she becomes agitated and aggressive.  The staff has said she is better in the morning than in the evening.  I don't think she has been aggressive towards the other residents yet...I believe only when the staff is trying to get her to do something.  It does take a lot of time to convince her to get cleaned up, I have experienced this myself.   It seems to me that most of these issues are somewhat common in the Dementia world.  

She just had her first fall that landed her in the ER department.  Luckily she didn't break anything or have a brain bleed.  She did have to get stitches in her lip and has a pretty nice shiner. She was combative with the ER nurses when they would try to change her bedding or take her vitals.  She would hit, pinch, dig her nails in and even kicked once.  I see this as a response to being anxious about being tossed out of bed or not understanding what they are doing to her.

MC just started her on Seroquel to help with the agitation - 12.5 mg two times a day.  It has probably been about 4ish days, which included an ER visit.  During her ER visit they did get a urine sample and the results of the culture was negative for a UTI.

MC is also talking about having her go to do a inpatient geriatric psychiatry stay and moving her to SNF.  I feel as if these suggestions are premature, especially with the fact that they just started her on Seroquel.  Also, I feel like a whole different set of issues will arise in a SNF since she probably would be sharing a room, she isn't completely immobile and does wander, and she has no attention span and despises a noisy environment.  She currently has her own studio apartment in MC. 

Thanks!

Love Matters

This is my Mom too, following your post for any advice. My Mom will use her walker, the staff at MC calls it her Cadillac. It is a nice one with easy to move wheels, a break and a seat that opens so she can carry things in it and if she gets tired she can sit down. I'm not sure what the name of it but I think it's called a rolliator. The doctor recently upped Seraquel to 25mg and added Ativan prn. The Ativan helps calm the exit seeking and anxiety but makes her sleepy so I ask if they would cut it in half. See how that goes. I don't like medicating but necessary for now. She has been in MC almost two months so hoping after adjustment she can come off meds. It's hard.

Jo C.

Hello WhatNow, the situation as it exists is more complicated since your mother has cancer that has metastasized. She is a dual diagnosis patient.   One would wonder which condition; dementia vs mets cancer is causing some of the issues as cancer can metastasize to the brain. I wonder if she is beginning to have bone pain from the mets or internal discomfort from the mets pressing on organs or other tissue which may be showing by agitation.  The input from me will be rather scattered as there is so much to be considered.

All input here has been regarding dementia. What have the cancer specialists had to recently say about her condition? Has she been seen in regard to her metastasized cancer lately? Is she in pain including the possibility of bone pain which can be terribly painful or other cancer discomfort such as pressure on her internal organs or tissue from mets? 

QUESTION:  Is she at this point, a candidate for Hospice?  If she is a candidate for Hospice and it sounds as though she may well be, Hospice can assist in managing all of this; they are also wonderful for extra eyes, ears and hands for their patients who are in care which is quite valuable.   They will also assess and address pain.   You may want to speak to whichever Hospice is credentitaled to go into your mother's care center.  You can explain the issues and address the ca mets to the bone and all the other issues; they can relate to you how they would come in, assess and manage if your mother fits criteria for their care.

You can also request a multidisciplinary meeting with the MC staff which would involve you; the supervising licensed nurse, an aide, PT, dietary, Social Worker, and any other involved staff.  The patient would be discussed in detail and a plan for appropriate care to best meet needs could be discussed. If the staff feels they can no longer meet your mother's needs at the MC level, that too is important and staff can explain why and give examples.  If this MC Unit is pretty much based on an ALF basis, then this may well no longer be the best setting for your mother's care needs.

Since she cannot communicate to be heard and since she is unable to really understand what is being said to her, it appears that compounds things; one cannot teach and have it retained between the lack of communication and the effect of dementia not to mention the possibility of cancer mets effect.

In this situation; starting low and going slow with meds for agitation would be the best approach.  She is probably having great difficulty processing what is happening as others try to provide care and also try to transport her and she does not understand communication.  Sometimes processing can be very, very slow for the person with dementia. If a person is hurriedly put into the wheelchair and then swiftly pushed down a hallway past other people and other things, that inability to process may be very upsetting. All of that plus the possiblity of unidentified pain from the cancer that has spread may possibly contributing to the difficulty .

If she has a favorite aide she tolerates best, I would ask for that aide to be assigned to her each day she/he is on shift.  I would also ask that all care be done slowly and with care and soft speech sounds with her even if she cannot understand.  Transport down the hallway in a wc if tolerated can be done slowly and no fast turns or twists in the hall; that can cause dizziness and affect processing. If she does not tolerate that at all, perhaps meals can be in her room if that will help with her nutrition.

As for using a walker; from what  you have written, it appears she is far too high a risk for falls and would not be able to use it properly.  Be very, very careful with this approach and if you are going to try this, please have a second person with you as she may well have a mishap.

As for meds; it is a, "start low and go slow" process.  My LO did well initially having low dose Ativan for high irritability and agitation. It comes orally or as a topical cream.  Orally, it is available in 0.5 mg; 1 mg or 2 mg.  My LO had the 1 mg tabs. It starts to take effect in about a half hour and goes to full effect in about an hour and a half and lasts about six to eight hours.

However; as time passed, my LO (who could speak and understand speech) needed far more assistance as her behaviors were over the moon as were her delusions (rigid false beliefs).  She was put on Risperdal (an antipsychotic as is Seroquel.)  It did work very well for her within a day and all behaviors were ever so much better.  Not perfect, but much better.  After four days on Seroquel, I would think the behaviors should have at least begun to be modified IF it is the dementia causing the changes without complication from mets'd cancer.  The Risperdal, similar to Seroquel did help my LO in about 24 hours; some LOs have taken up to almost a week to have full effectiveness on antipsychotics.

Whether this will be successful between the dementia as well as the mets'd cancer, it would be something to do a trial of to see what works best.  Hopefully the staff is not forgetting the cancer issue and focusing only on the dementia.  However; the unit's purpose is Memory Care; dementia, so they may not be tuned into the other.

I am not certain of the inpatient GeroPsych stay especially since communication would be nil. Does she have a dementia specialist?  Perhaps a Neurologist who could assess her being that she has a dual diagnosis?   It may be that a psych stay may be able to focus on her issues more easily than can the memory care staff; personally I would consult with them first since so much is going on what with dual diagnosis and lack of communication; let them tell you whether they can manage this effectively or not.  Really important to communicate the dual diagnosis issue. If they had to do a scan to ascertain what is going on inside the brain to r/o mets effect, she would  all probability have to be sedated to be able to do a scan.

Just realized she is in her own private memory care apartment.  She is no longer a candidate to be living alone in a room without good oversight if the risks are extremely high and her care needs are really high.   Memory Care is not usually staffed as much as are the extended custodial care nursing care units.  By the way; SNF units also have private rooms.

This is going to be a challenge no matter which type of unit she is on.  Extended care nursing unit is staffed better.  She has met's cancer; what level of care does she need for that and how is her pain and other care needs?   Would she need a sitter?  Either unit is going to need some sort of alarm for her getting out of bed especially with the high risk for falls. 

I so wonder if  she has unmet needs re spread of her cancer; that would be something to perhaps address in whatever way it could be done just to be able to manage her discomfort and possible frank pain if it is present.

It is a very difficult situation that you find yourself in and you are a very dear and caring daughter on behalf of your mother; she is blessed to have you by her side.   There will be no perfection in all of this, you can only do what can be done under the circumstances with the challenges at hand.  Do think a bit about all of this and do let us know how she is doing and also how you and your sister are doing; we really do care and will be thinking of you.

I send warmest of thoughts your way from one daughter to another,

J.

WhatNow?

Wow Jo C.  You gave me a lot of good things to think about and consider and also remind me to stop and look at everything as a whole.  I definitely needed that, so thank you.  I know it helped my sister too.    

Unfortunately since early this year we don't have a whole lot of status on mom's cancer and how it is or isn't progressing.  She has become too much to handle and take to appointments. Nothing like waiting in waiting rooms with someone that has no attention span.   As of her last restaging in January her cancer was still holding steady.  There were no new mets to be seen and the ones they already knew about was stable, however that was 10 months ago. 

I do think it is time to start thinking hospice and seeing if she does meet the qualifications.  I'm sure they would let us know if she does not.  We will definitely pursue this. 

It has been a crazy few days.  I feel like the MC facility is at their wits ends with mom and they keep saying they have noticed a recent change in mom's behavior, like within the last week or so.   I have seen her declining, but nothing I would say is out of the ordinary, but I'm only there a few hours a week.   There have been some recent staff changes as far as an interim Director of Nursing, since the other one is out for a while due to health issues. Then to top it all off, all the medicine changes in the last few weeks for mom.

As of yesterday, her MC facility sent her on another ER visit to get her admitted to a Geriatric Psych ward.  She was admitted.   My sister was there to make sure she was ok and she could speak for mom, she also mentioned the cancer to them and that we were also up for talking about hospice.  She told them that our goal for mom was to make her comfortable.  

We talked to the Nurse in MC today, that was pushing for her to get admitted to Geriatric Psych to try to understand what they are hoping gets solved. She mentioned mom being in an anxious state and finding something that will allow the staff to help mom get the care that she needs.  

I guess now we just wait.  Wait to talk to the social worker at Geri Psych, wait to find out how long they are targeting to keep her, wait to see what their overall plans are, wait to see if it helps her.  I am hopeful since the hospital did say they will also have an Oncologist consult on her too, so maybe we will get some new news on that front or at least be able to scratch it off as a cause.

I Just feel like we are drifting about right now, waiting to see what is next, which is not very different from every other step of this journey we have been on.  Hopefully we land on something that is a little more solid in a few days.  

Jo C.

WhatNow; you and your sister are doing all the right things as best as can be done.  It is good to hear that your mother will be receiving an Oncology consult.  A one stop shop while she is an inpatient so to speak as she cannot be transported.  A lot can happen with cancers in ten months; especially when metastasized.

Sometimes our Loved Ones (LOs) will become very agitated when there are unmet needs. This can be as simple as being too cold or too warm; or being hungry; or being constipated.  One of the most difficult issues is when our LO cannot communicate with us due to loss of ability to communicate and even having the inability to self identify what is causing them such discomfort and/or difficulty.  The most serious of these is pain which is not being addressed to be relieved. Sometimes the pain is moderate, other times it can be pretty severe. Pain can be persistent all the time, or it can come and go and sometimes when being moved, etc.  So . . . having Oncology taking a look and even ordering a scan if necessary while she is in the hospital to assess the progression of the mets would at least give a good grounding for treatment.  If the brain has been affected by metastasis, then knowing that will give knowledge for her treatment plan.

So hope all of this is managed well at GeroPsych.   You may have to check with staff at GeroPsych about the Oncology consult to ensure that gets done asap as they get so busy on those units that sometimes things that were intended get missed.

Here's hoping that all goes well for a much better tomorrow,

J.