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quick update after a long silence
CodyW
Posted: Monday, March 20, 2017 9:00 PM
Joined: 4/5/2013
Posts: 775



(This thread is a few months old.  An update is at the bottom.)

Hi friends,

Although I read posts and occasionally respond, it's been quite awhile since I've posted about my mother.  For those who remember me, here's a quick update.  The background:  my Mom lives in a CCRC.  She's been in MC assisted living for a little over 1-1/2 years.  Previously she was in regular assisted living for 2 1/4 years, and independent living for 2 years prior to AL. 

Friday my Mom was transferred to skilled care. The DON recommended that she move to SNF the same day I complained of inadequate care from the MC aide on Sunday.  Her care plan was not followed that day at all;  she was neglected.  She ate breakfast and lunch without her denture, took off her own wet depends before lunch, and soiled herself that afternoon.  When I arrived at 1:30 this particular aide was sitting at the desk, which is typical for her.  After discovering the mess, I questioned the aide about Mom's care plan (toileting every 2 hours) and requested that attend to her.  The aide got defensive and blamed my mom for refusing care.  The way she went about cleaning Mom up brought her to tears, and I had to step in to calm her down.  The aide left Mom's room as soon as Mom was dressed without offering to help deal with the soiled pants, shoes and toilet area.  She pointedly addressed my mother with a sing-songy goodbye, knowing damn well that it would elicit an unpleasant response from my mom, and then gave me a little chuckle on her way out the door as if to prove her point that my mom was difficult.  I was beyond disappointed.

I think that the DON for AL is lazy about addressing problems and disciplining staff. Fortunately for the residents, most of the aides are dedicated, skilled and caring.  The suggestion to move my mom to SN smacked of retaliation.  However, after speaking to the ombudsman, the executive director, and head of health services I decided to go ahead and allow the transfer to SNF.  The move was presented as a 3 week trial.

Another thing that really bothered me is that the whole care team was blasé about pressing for the psych consult, which I requested back in January after noting that Mom was becoming more delusional and uncooperative.  After 2 months, all I got from the psychiatrist and his NP was a recommendation for some Zoloft.  Finally, today - her 4th day in skilled care - the geriatric psychiatry NP did a comprehensive med review when I just happened to be on the unit.  She reviewed several options with me and we agreed on a plan.  Assuming this plan is put into action promptly, we should see the results before the end of her 3 week trial and team meeting.  At that point it will be decided if the move is permanent (and I suspect it will be.)

Moving my mom to the skilled nursing section of the CCRC always seemed like a question of when, not if.  But the way this has gone down is just so disappointing.  I refuse to argue with the DON over whether the aide was doing her job.  If an adequate care plan can not be followed in the MC ALF, then something had to change.

IMO, resources are stretched so thin across the board that our LOs need us to act as constantly vigilant, assertive advocates.  Advocating can ruffle feathers and result in  blow-back.  Nothing about this damn disease is for the faint of heart.  I hate Alzheimer's.

CodyW


dayn2nite2
Posted: Monday, March 20, 2017 9:34 PM
Joined: 6/20/2016
Posts: 1168


If you were unhappy with the care received in the MC portion, you likely won't be happy with the SNF care either.  It's all the same facility, right?  With the same policies for employment and expectations of employees?

If it were me and my LO had been neglected and cared for in a harsh manner as you describe, my LO would be moving out of that facility period.  

Find another facility for her and move her, but check the contract that was signed regarding notice, etc.


His Daughter
Posted: Monday, March 20, 2017 11:09 PM
Joined: 6/25/2014
Posts: 1766


Hi Cody!  I'm so glad you popped back in about your mom.  All I can say is I'm sorry this has been so difficult.  Thank goodness I kept my dad at home, cause Honey, I don't think I'd have the patience as you.  And I mean it.  (Not a patient women here.)  Kuddos to you, sounds like you handled it beautifully!  So I really hope things go smoothly from here on out. 

Fingers crossed, her new care plan helps. And you can get the comfort you deserve for both you and your mom.

 


King Boo
Posted: Wednesday, March 22, 2017 9:19 AM
Joined: 1/9/2012
Posts: 2544


Hi Cody-we've shared a few chats along the way, I am stopping by with my 2 cents.

-you handled the reality of   the situation beautifully.  One bad insensitive caregiver does not make an entire facility bad - but if poor care becomes the norm the tolerance of such a person becomes a worrisome sign.  My Dad had such a caregiver, who in my eyes joked and teased him (inappropriate for cognitive issues), and clearly had little tolerance for my oh so challenging LO (who was beyond frustrating).   I requested a caregiver  change and was accommodated .The bad caregiver did better with women and less frustrating residents.

In my many tours of facilities I came across good MC with poor snfs and vice versa.  So, move forward optimistically.  If poor care is evidenced you can pursue other options, but with so much of Mom's $$ invested you do not want to move as she will have priority status for the snf and Medicaid. It is great to have peace of mind now about geriatric psychiatry, finally competently managed.

My LO's move to the snf came quickly....I was called at work and counseled....amidst my tears and sobbing...I gave consent and he was moved that afternoon - had to grab the bed, the y went quickly in the higly regarded snf.   I knew it was coming, but it still hit me like a shock.

The timeline of care you report seems to ballpark what  I would expect from reading & my own experience.  Dad had 3.5 years in high acuity AL/MC before a move to skilled.

The will be cherish worthy moments ahead for you with Mom in the snf and hopefully with new staff relationships. I will never forget how staff advocated for Dad and supported me during this time, and how staff gathered to say goodbye during dying long after their shifts were over.  I pray for them often.

Be proud of yourself for your rational decision making in the face of emotional upset


CodyW
Posted: Wednesday, March 22, 2017 12:59 PM
Joined: 4/5/2013
Posts: 775


Thank you for all your responses. 

King Boo, your remarks were particularly reassuring. 

His Daughter, I am very sure that you have more patience than I do.  If I lived with my mother, my patience would have been completely depleted many years ago, my marriage would be in shambles, I would be 30 pounds heavier, I would resent my siblings, and Prevacid tablets would be consumed like M&Ms.  With a nod to Clint Eastwood I paraphrase:  "A woman's gotta know her limitations."

These next few weeks will be one of adjustment, learning, trail & error.  For now, I am trying to withhold judgement about the appropriateness of this transition to skilled care.  It is apparent that my mom's care needs have increased, especially in regards to incontinence.  However, an option that is supposed to be available is for her to remain in assisted living with supplemental support (private pay home health aides.)

I evaluated the quality of this CCRC's skilled nursing care facility before my mother entered the community 6 years ago.  It was very good at the time, but I do have to look for updated information.  So far the SNF staff that I've met have all seemed very professional and compassionate.  My mother's room is very nice, and there is always a concern about bed availability down the road. 

The CCRC's SNF is divided into 2 sections, and her 20 bed section is the one designated for residents with dementia.  Sometime this year they will be breaking ground on additional SNF wings, then transferring all the residents who are living in the other wing to the new rooms so that those rooms can be refurbished.  If my mother stays in this current SNF room, she will not be effected by all the construction turmoil.   Remodeling projects should not drive decisions about her level of care, but it is a factor worth considering.

I'll update again in a few weeks.  Thanks for your support!



TessC
Posted: Wednesday, March 22, 2017 1:55 PM
Joined: 4/1/2014
Posts: 3861


Wow, I commend you on being able to keep your cool! I think I would have assaulted the aide. Good luck with the trial and I hope your mother will get good care in SN. Let us know what happens.
King Boo
Posted: Wednesday, March 22, 2017 1:58 PM
Joined: 1/9/2012
Posts: 2544


Love the Clint Eastwood reference!  A great mantra.

Regarding the 30 lbs - a word of caution.  Eating becomes much more of a focus in snf.  Sometimes, as Dad declined, all I could hope for was that he would enjoy the old fashioned donut brought from Dunkin, as a ritual.  I should have sat a sipped sparking water with him, but I always got a cup o joe - and a 'few' munchkins.  That wacked on a lot more lbs on me than I realized at this stage of life.   Bring fruit for yourself

While the staying in AL with extra aides seems attractive, in reality, it really would only benefit you as loving daughter.  Each care level move about KILLED ME, the over responsible eldest daughter.  I dreamed of Dad passing in his lovely, OWN cozy room with the sofa.  It didn't happen.  Move to snf we did.  I still dream about that. On a good night, I am sitting on the coach, smiling at Dad. On a bad night, I am viewing the empty couch FROM the bed.  In the light of day, I know Dad had good days in snf.  It was just very painful for me to let go of the vision of him passing peacefully in his sleep in his MC room.  Surroundings meant little to Dad as things progressed-(I am not even sure he realized he had a roomate most days) - the kind hand, work, patient caregiver - everything.  One day in snf, I observed from the door the patient, patient aide coax Dad into changing his diaper, so befouled I could smell it down the hall.  The kindness and care had me on me knees in gratitude that night. 

Staying in AL will garner extra aids, but these aides absolutely will not have the training and sharp, sharp eyes of RN's.  RN's in the snf caught UTI's; accurately called the threshold for talking to me about palliative care; as well as hospice evaluation.  You will miss these opportunities if Mom were in AL with extra support.  It's time to let that vision go........ouch.

Compassionate staff are key - if you have that, all will be well - or as well as things can be in the face of the disease.  Things will happens as they will happen.  Go in alert, with a relaxed grasp, forge new relationships with the new staff who will be your guides in this final leg of the journey. 


dutiful deb
Posted: Thursday, March 23, 2017 12:09 PM
Joined: 1/1/2012
Posts: 1743


Cody,
It's good to see your update. Sounds like you have been through quite a tumultuous care giving ride, but are working through it with wisdom and good sense. I applaud you for maintaining such strength. 

                        Deb


Jo C.
Posted: Thursday, March 23, 2017 1:56 PM
Joined: 12/9/2011
Posts: 8108


CODY!!   HELLO!  It  is so good to see you again, Cody, I have missed you.   I have thought about you so often and wondered how you and your mother were doing.  I can see that not all has been sugar and spice to say the least.  I am sorry.

First; how tremendously inappropropriate that aide's comportment was. Unprofessional as well as being mentally abusive to a dependent elder who no way could hold her own against such treatment.  I congratulate you on your self-control in not planting a foot on the seat of that deplorable aide's pants!  How dare she feel so entitled to act in such a way. 

I do find that performance expectations for staff starts at the very top of the hierarchy and rolls down to the staff on the units.  Evidently, leadership standards and performance expctations are not very high for that AL group.  That can vary from unit to unit, but in the well-run facilities the ENTIRE staff will work to expectations of the DON and other leaders within the facility on all units if performance expectations are high.  I have seen this in action so often both during my career as well as personally.

It is also curious in why there would be resistance from staff to having a psych consult.  A doctor's order would have eliminated all the fuss blowing back at you.  That was really a surprising attitude from staff.

The three week trial sounds like a good idea.  It may take a bit longer for both your mother and yourself to adapt to the new setting, so you may want to let it play by ear.  The idea of using personal aides in AL is of course an option; but I see it as a short term solution requiring constant oversight and juggling.  Would that be consistently effective for the long haul would be the question.

You are very intelligent and have good instincts, you will know what is right.  I had the failing of sometimes not seeing some declines as they were subtle and I was not attuned to the shift.  I also found it a source of grief or almost feeling that I was giving up when such a change had to be made.  This is one of those journeys with far more self-questioning and heartache than the opposite. 

I so hope the new setting will be a positive for your mother and if she is up to it, that there are good activities that will engage her even if she just watches until she is more comfortable.

Please keep us posted as to how things are going and I send my very best and warmest wishes for all to go well for all concerned.

J.


CodyW
Posted: Thursday, March 23, 2017 4:03 PM
Joined: 4/5/2013
Posts: 775


Jo -  Thanks for your kind and supportive reply.  I did not intend to be such a ghost, but my mom was coasting along on a plateau for a year, so I was just laying low and riding that wave. 

Personally 2016 was a pretty good year.  The relative calm gave me time to have surgery for a painful joint (all better now) and to complete some long overdue home improvement projects.  I also had the time to help my son move out of a very problematic apartment into a much nicer place.  For the first time in many years, we did not take a 7+ day family vacation, but there were many long weekends away with family and friends.  My husband and I updated our own wills, estate plans and POAs.  I made progress on reducing clutter, including the last few boxes of my mother's stuff.  My sisters and I got to have some fun together over activities that did NOT revolve around mom and her dementia.

And now my caregiver duties are ramping up again.  Transitions are certainly the hardest.  The support I get here is very, very reassuring because being responsible for my mother's care can be very scary.  Expert ski slopes = YAY!  Snorkeling with huge whale sharks and sea lions = FUN!  Rappel off cliffs =  WOO!  Meetings to determine my mother's future care = spiked blood pressure, sinking feeling in my stomach and sleepless nights.  Emotionally, she is my Achilles heel. 

I've always known that I would need professionals to help me navigate my mom's care.  I visit her 2 to 5 times a week plus spend additional time on my own addressing her needs.  One of the very sweet nurses in the SNF reminded me today that they are there so that I can live my own life.  She is so right.  My mom is part of my life, but I do not want her to dominate my existence.  That must sound so selfish or like a huge luxury to all the caregivers here who are on duty 24/7.  But that is how it is for me, and those who have followed my story will understand.

I will post again in a few weeks when I know more about Mom's future care plan. Best wishes to us all, PWD and caregivers alike!
ActivistsSon
Posted: Friday, March 24, 2017 2:07 PM
Joined: 3/9/2017
Posts: 17


Cody,

You did better than I might have. Sometimes I make things worse by saying something snarky about how much I appreciate DON's who only the cash the percentage of their paycheck earned each week from cooperative patients and low-maintenance family members.

(In my opinion, your distress is not particularly the aide's fault. Aides around here earn about $15 an hour, whereas their managers and executives earn 6-7 figure salaries - the aide you 'caught' should either have been better trained, better supported, or perhaps not even hired at all).

Others on the forum have given you good advice. The one layer I might add is, when the dust settles, consider that you may be looking to the biomedical community to address a (bigger) challenge that is not entirely biomedical.

For example, starting in 1996, nearly every professional guideline not co-authored by the pharmaceutical industry emphasizes the importance of 'person-centered' care, including the 'well-being' needs of CG as well as PWD.

In your case, were 'dignity-preserving' methods at the top of the care plan, a situation where your Mom ended up soiled wouldnt have to rely on your Mom's enthusiastic cooperation to be flagged for help.

Nor would you be punished for raising a legitimate question about maintaining hygiene standards.

Its not a felony if the aide was frustrated with your Mom - the people caring for our LOs have tough jobs that few of us would be willing to take on as a career. Aides get harangued, punched, bitten and cursed on a regular basis. Its entirely possible your Mom's behavior was fine, but her 3 neighbors' antics that day werent. And the aide just got fed up.

But that doesnt make it okay to just leave your Mom sitting there.

I'm also worried about the hinted default 'solution' of better meds, especially if the 'illness' isnt entirely neurochemical.

My two cents would be to schedule a private meeting with the ombudsman, express your appreciation for their guidance, and ask if you were too high maintenance with the DON.

(It doesnt matter if they think you were or were not, or if you care what they think, you just need to come across as diplomatic, understanding, self-aware and constructive-solution-focused).

Ask them privately for suggestions on how you should best handle 'the next time', whether it comes up on the floor or in the DON office.

If they then, in private, still give you some b-s or patronizing response, then you'll know that corporation's most-diplomatic employee is FOS (full of soil) and its time to look for a new facility.

Its rare that you would hear a full confession that the DON needs to be fired, but sometimes they will hint your frustrations are part of a known pattern they are trying to address.

Or better yet, best case in fact, you've made a new friend who will hopefully turn around and tell the DON that you are 'one of the good ones.'

Good luck.

 

 

 


CodyW
Posted: Friday, July 7, 2017 4:25 PM
Joined: 4/5/2013
Posts: 775


Hi Friends,

My intention to post again “in a few weeks” quickly turned into a few months, but here I am to give another overdue update.


My mother has remained in skilled care, and is at the end of stage 6 of the Fisher Stages of Alzheimer's. Her behavior has worsened, and she has had many falls. Her ability to articulate speech and understand speech is off and on. She has delusions, and possibly also hallucinations. She screams when the aides provide care regardless of their approach, wanders with the intent to elope, goes into other resident's rooms, and complains that she hates everyone and everything. Photographs of people sometimes upset her because she wants to get the people “out of there” (meaning out of the picture frame.)


Mom does have moments of peace. The SNF provided her with a robotic cat, which she believes is real and treats like a child. She seems enthralled with the cat's eyes, purring and movements; she sings to it and talks to it. She still listens to music, hums and sings along, and stands up to sway and bob to the beat. She is eating well, and her weight is steady. She voids when I put her on the toilet. Mom still knows who I am and my name. She asks about other family members by name.


Her meds have been adjusted several times, and continue to be adjusted. Several medications were discontinued under the assumption that they no longer helped her, or could even be contributing to her falls and sleep disturbances. At one point the geri-psych doc recommended a hospitalization, which was declined by the SNF. (I found out about this consult after the fact, but am glad she was not transferred.) My mother's behaviors can teeter on the line of being a danger to herself or others. I agree with ActivistsSon about the importance of patient-centered care, and I am keeping an eye on opportunities to improve her interactions with the aides. However, even with the best of care I am very open to the possibility that my mother can have a more peaceful existence with the help of the correct pharmaceuticals. I do not believe that the SNF is using medication for convenience. I always ask that she be tested for UTI when her behaviors flare up, and screened for other physical ailments.


In May there was some tension between myself and the administration when they neglected to inform me about a fall and a new medication. I'm trying to advocate for my mother without alienating the staff, to the best of my ability. They do respond promptly and professionally to my questions, concerns or complaints. There are a few weak links among the staff, but I still feel the facility is a very good one. The proximity to my home is important, and my mother has a “life care” contract with the company. There is very low staff turnover, and the other residents in this community are kind and supportive of each other. Moving my mother to another facility is not an option that I want to consider.


I inquired about enrolling my mother in Palliative Care program, and the facility readily agreed. This has been a huge comfort to me. Although the Palliative Care nurse works for a home health agency that is affiliated with the CCRC's corporate parent, I believe she is enough “outside” the facility's hierarchy to serve as an independent advocate, and yet enough “inside” to get all the information she needs to see the whole landscape. She plans to do some more training with Mom's aides, based on Teepa Snow's methods. This Palliative Care nurse attended my mother's first quarterly care conference and is keeping my mother's quality of life goals front and center. With her on Mom's care team, I do not have to worry about my mother missing out on hospice if the need arises suddenly.


My mother's decline and move from MC to SNF has left me feeling numb. I have always found my mother's personality and temperament to be challenging. She was a very independent woman. She knew how to have fun dancing, traveling, or pursuing her own interests in the company of others. But my mother never learned how to say “I am sorry” or “I love you” or “I forgive you.” She could be very judgmental and selfish. I still get many glimpses of her old self in our day-to-day interactions, which is mostly encouraging - but sometimes just plain awful. I want her to have peace at the end of her life, but feel helpless to help her find it.


My sisters and I are still on good terms. One was able to attend the first SNF care conference, when it was decided to make the SNF move permanent. The other sister was here for the first quarterly care conference. They have both encouraged me to stop doing her laundry, which is a terrible task but sometimes the one obligation that forces me to be there. They have expressed their gratitude and trust to me – which wasn't always so, in the earlier stages. I know my siblings are both relieved to not be responsible for Mom's care, and I don't blame them for that. They live far away and have their own crosses to bear.


Thanks for reading to the end, especially those of you who've communicated with me during my more active days on the forum. I do stop in to read on occasion, and regret not having the energy to be more supportive of other members. You're all in my heart.


Courage and Peace,

CodyW

 


jfkoc
Posted: Friday, July 7, 2017 4:44 PM
Joined: 12/4/2011
Posts: 13474


It is good to hear from you!
VKB
Posted: Friday, July 7, 2017 5:17 PM
Joined: 12/4/2011
Posts: 3011


CodyW wrote:



IMO, resources are stretched so thin across the board that our LOs need us to act as constantly vigilant, assertive advocates.  Advocating can ruffle feathers and result in  blow-back.  Nothing about this damn disease is for the faint of heart.  I hate Alzheimer's.

You make an important point here.  We all agree with you...Alzheimer's requires us to be very brave.  Thanks for your message for caregivers to be vigilant and assertive advocates.  Peace Veronica

MPSunshine
Posted: Saturday, July 8, 2017 6:12 AM
Joined: 5/21/2016
Posts: 1625


Hi, CodyW, glad you posted. Hang in there, we're all in the same boat.
Bob Sacamano
Posted: Saturday, July 8, 2017 7:33 AM
Joined: 1/31/2012
Posts: 284


My big takeaway is that you think that you think that your mother can have a more peaceful life with pharmaceuticals and that you don't think that the NH staff is using them for their own convenience. It's good to have a firsthand account. Thanks for the post and I hope your mother's quality of life improves.

 


His Daughter
Posted: Saturday, July 8, 2017 8:24 AM
Joined: 6/25/2014
Posts: 1766


Cody, thanks for the update.  Glad things seem to be going well.
His Daughter
Posted: Saturday, July 8, 2017 8:27 AM
Joined: 6/25/2014
Posts: 1766


Cody, thanks for the update.  Glad things are going as well as can be expected.
King Boo
Posted: Saturday, July 8, 2017 9:15 AM
Joined: 1/9/2012
Posts: 2544


Hi CodyW,

I re-read your earlier writing in this thread, and am glad that you had a year of plateau and time to shift focus a little bit.  The "recharge" will serve you well in the upcoming year.

I think if I recall your Mom was taking anxiety meds.  I would not hesitate to add any medication recommended by the Geriatric Psychiatrist as it could greatly improve her peace and quality of life, particularly important at this next part of the journey.  A side benefit is that staff are more likely to bond with Mom too if her care is a little less challenging, although this is not a all uncommon as you know.  

The falls are hard to hear about. My Dad at one point was falling 3x/day - impulsive, no safety awareness, even under staff supervision he could move quickly.  We just had to keep our fingers crossed and hope for the best,    It was a rough period when we were still on palliative, because I had to make the hard decision to send to the ER or not (which we avoided, with neuro checks). Once hospice was the chosen philosophy, that pressure was off.  

There will still be memories to cherish along the snf care pathway, perhaps fewer and further between, but I have a few funny and sweet memories during Dad's last 11 months which were in skilled.  The care staff are part of that, too.


 
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