Let go of suspicion?

Jcee85

New to community. Honesty welcomed!

 Reluctantly agreed to try my dad (91, late stage Alzheimer’s and Parkinson’s) in memory care. I am POA. He was admitted as respite resident on Oct. 1st. and added additional month in view of what’s happening. In the beginning he made comments about going home. Within those first few days he fell unwitnessed.  Dad fell 3 weeks prior at home left unattended by caregiver. We stressed as soon as meds are given put him to bed because he gets anxious. Fell on his back with no injuries. Figured accidents Do happen. He appeared to be somewhat relaxed after comments about coming home which gave me peace of mind. Within the last two weeks, everything seemed to come to forefront. I received a phone call 3 days in a row, he tore his skin (like tissue paper on low dose aspirin), bruises on right arm. Next, he was touching aids inappropriately (which is part of disease especially since vision is monocular). Third, spitting out food so they isolated him. He now sits by himself because he may spit on a resident. (I recently found out he is on a soft diet of puréed foods. Knowing my dad that’s going to tick him off because he loves to eat. One day I’m being told he eats by himself some days and fed by aides as well. if he doesn’t want to eat something they force, my dad will spit it out!)

My dad remains combative on meds.  Presently taking Depakote and Seroquel (which is also a high risk for fall med.)  He takes Depakote 125 mg and Seroquel 50 mg. Both in AM and PM.  At night Trazodone 50 mg. added to help with sleep.  Seroquel was added to his meds approx 3 months ago.  Low dose, increased dose after a month but not much of change shown to help combativeness in AM.  At home slept through the night all under control except for combativeness in morning only.  Now I’m told by some it’s all day (lunch, dinner time) and others say he sleeps most of the day??? 

Morning care is where the underlying problem lies.  Dad does not want to get out of bed in the morning to get cleaned up for the day.  Started at home when Hospice aides bathed him in bed. He was used to getting up to go to bathroom to get cleaned up.  Dad was never morning person and asked to be bathed in afternoon. I thought Parkinson’s maybe getting worse.  I was trying to get to root of problem but since my sibling had to come to help me he suggested too much to handle at home and as stated above I reluctantly agreed to try respite residency. That’s when MC came to home to see dad’s combativeness in bed. Assurance given it can be handled and their facility is the place for him. Facility reported fall, tears to skin, when things occurred. Everything seemed to be copacetic first few weeks. Then phone calls “dad is fighting tooth and nail with two hospice aids so we are bringing in a psychiatrist”.  A psychiatric nurse practitioner PNP evaluated him via telehealth. First the director of MC advised psych. came at lunchtime to evaluate morning care routine??? Director advised PNP that my dad is impulsive. Without actually seeing him in action PNP suggested Ativan Gel to rub on his wrist and/or behind ears.  Claims this will calm him down enough for them to get him up and running but needed my approval. I advised her that I would need to talk to my nephew (recently completed residency for Psychiatry) and research.  

I do not have a problem w/medications if they will help, however dad already takes enough meds. He sleeps most of the time I visit and aides tell me he loves to sleep. Hmmm.?( I asked for a phy. clinical review of meds prior to admittance and nothing done). 

 

Before approving I asked for a zoom meeting so we can work together as a team. I was my dad’s primary caregiver alone and with help of aides (when I could find a good one to stick around). I wanted to help with strategies I know worked at home and brainstorm what could be done to address triggers.  The best they could do is a phone call.  They could not tell me what interventions were used or how they deescalated matters but each team member was willing to tell me my dad is very combative!  Bottom line MC wanted me to approve Ativan gel.  

As POA I asked to view my father’s medical records.  This is where I discovered they already gave him meds as early as 2/3weeks prior without my approval.  When I spoke with Hospice nurse/director a few days ago, she advised no change in meds???  MC notes that I said their facility “ may not be the one for my father” when In fact it was said by the Director of MC!

PickledCondiment

Welcome to the forum, you're now among people who have experiences and insight to share.

You have every right to be concerned about the situation. The MC notes indicating this isn't the place for your father is a huge red flag, IMO.  Time to have an in-person conversation with the director and anyone else in the management organizational chart.  Calling them out on the situation completely appropriate, asking them to provide factual explanations, review the med charts, etc.  

Reading between the lines, it seems they've already decided your dad shouldn't be there.  You may need to find another MC facility before you confront the current facility too vigorously. Sadly, the eldercare industry is in turmoil with Covid, worker shortage, apathy, etc.  If someone leaves the facility, another person will be coming in the door the same day.

Marta

Dear Jcee:  you are a wonderful advocate for your loved one.

You feel that your dad is already on “enough” meds.  I ask you to look at that statement critically. The meds your dad is on already are not controlling the behaviors that are interfering with caring for him. In that sense, they are NOT “enough.”  IMO a trial of topical Ativan is perfectly appropriate (I am a geriatric NP familiar with the meds your dad is taking).  If it allows him to stay at his current facility, would that not be a win-win outcome?

Best of luck with these difficult decisions. 

kyronae

I wish I had more advice on how to deal with this, but in the absence of advice, let me say that I'm so, so sorry you're dealing with this. It's exhausting and emotional and just SO much.

First, you did nothing wrong by trying out MC. And MC might still be a good call! But you're also not wrong to be upset and suspicious of how this particular MC is handling things. That's a lot of red flags and I'd be extremely worried, too.

Take it one day at a time. And I know you said you were the primary caretaker and POA, but if you haven't asked directly for friends and family to be more active in helping care for him or look into options, don't be afraid to. You shouldn't have to do this alone. If you have asked and they aren't being cooperative, you have every right to be angry. Don't let anyone gaslight you for looking after your own needs, as well as your LO. 

I really hope you can find some peace for you and your father soon. Bless.

jfkoc

I would be concerned also. Advocates must always be concerned. Your father is blessed to have such a good one. I would be especially conccerned with the red flags.

Question? Why does tha facility have to get him up and going in the morning???

One thing you can do is to evaluate all drugs...prescribed and OTC...for side effects and interactions.

Please do continue to keep us updated.

Jcee85

PickledCondiment thanks for the warm welcome! I planned on calling out the MC director.  The director of the facility, who I had a very good repore with, just left because other is returning from maternity leave. Just my luck.  Everyone made it seem like she wasn’t returning until the 1st of the year.  Even though I do not want to move my father, I may have no choice.  Therefore, I plan on touring other facilities starting tomorrow just in case.  I don’t want my father to endure any more undue stress, if possible.

Jcee85

Dear Marta,

Thanks for your professional opinion.  His medical records show they have given my dad Ativan .5mg and Morphine 5mg/0.25 M.L. SL without my approval.  I’m still unsure about adding more Ativan to the mix especially since I do not know why he was given Ativan and Morphine simultaneously on more than one occasion.  I need answers first.  I also feel if the facility listened to my suggestions and gave those a try, he may not need more meds. I don’t have your expertise but what I do know is that none of the meds prescribed to PWD were developed for dementia.  Not to mention they impact the entire central nervous system.  I’m sure you heard of Teepa Snow’s Positive Approach to Care. If more caregivers used her approach, perhaps there would be less anti-psychotics used.  Just saying why not try my strategies and if they do not work then try more meds.   

Jcee85

Kyronae, I do have a sibling but I might as well be on my own. When my dad was home with me, he visited once a week sometimes with a meal or two.  He is a Veterinarian and “has a business to run.”  I’m an art teacher who taught virtually while taking care of my father in between classes because two caregivers abandoned us.  My life is just as important as his.  In fact, he is the one who fought to put my father in MC because he helped me put him to bed 3 nights in a row and that cured him.  I’ve been doing everything for the past 2 years alone while he made his weekly visits for an hour at best. After I agreed to try MC, he conveniently forgot to mention he was going to his 2nd vacation home in Naples, Florida.  No grass grows under his feet!  Where is he while I’m here dealing with matters and could use help?  3 guesses.  My father is a wise man. He chose the right child to be POA.

Jcee85

Jfkoc, thanks for the kind words and advise.  As you suggested, I did ask for a physicians clinical review of meds.  Never responded.  I will bring that up in my letter.  It seems all I do is write letters lol.

DrinaJGB

When my DH was in a neuro rehab after 4 months hospitalization for brain injury--her was given drugs against my concerns, but I was assured they were very minimal amounts, he is in a safe place, blah, blah.

Long story short---came in on a Sunday morning and found DH rocking and spitting and unable to walk or respond.

I had the m call 911 and he was transported to a hospital. I was told---after an MRI---that DH should "never,ever have been given those drugs in ANY amount"-- due to the insult on his brain. Result was a total drug "washout" in ICU for 9 days, and then moved to a rehab floor to re-learn how to walk.

jfkoc

I have no medical training. 

That said I do want to share with you that it is known that Ativan can worsen the situation it is perscribed for.

 I also want to share that according to drugs.com there is a major interaction between Ativan and morphine.

I can not believe that either of these two meds were the initial drugs chosen or that they were given together.

I would certainly check the credentials and expertise of the medical "professional" who did the perscribing and would want an answer as to why they perscribed without your permission.

I think your conclusion that the MC has inadequate training at best.

Please continue to follow your gut and please keep us updated when you can. We want to know how both you and your father are....

Jo C.

This does seem to be a set of significant challenges. The one thing I did not see was a medical reason for giving him morphine - do you know why that is being given?  Is it still necessary?

When looking at the meds he is taking at night/bedtime; I can understand his not waking easily in the morning and not wanting to get up early; it's a lot and the meds may be working in concert with one another to cause "fogging" and tiredness in  the morning.   If the meds are medically necessary for him, and they may be, perhaps the patient plan of care can be adjusted and address letting him lie in a bit longer in order to wake up from med effect, or perhaps have the physician assess him for necessity of the meds he is on now for any adjustment IF that would be appropriate.  His breakfast can be provided a bit later.

As for Ativan, it is a decent med that for many of our Loved Ones (LOs) has been very helpful without problem.  Others may not do well for one reason or another; but my own LO benefitted by having been prescribed low dose Ativan (.5), on an "as needed" basis for agitation/upset that could not be calmed in a lesser manner.

It may be that a bit of adjustment in other areas may also be helpful.   It is difficult for the staff to vary care, so usually breakfast is given early a.m.; the grooming done early a.m. as much as possible; bathing at arbitrary times, and the pureed food - well . . . . not so tasty or mouth pleasing

Could the plan of care be adjusted not only for letting him wake a bit later, groom a bit later, and to bathe in the afternoon or early evening rather than early day?  As for the food - it is probably very bland and has a negative mouth feel for him - can you ask for a physician's order for a swallow evaluation to see what he absolutely can or cannot have?   For instance, if he swallows sufficiently without aspirating/choking, could he handle a soft diet rather than pureed?  I do not know the answers to all of this and of course his safety is of primary concern, but it may be helpful to see if his routine can be adjusted as appropriate for him.

What I used to do, and you can also do, is to ask for a Multidisciplinary Patient Care Meeting.   The facility is supposed to do these at intervals anyway.  In this, you would meet with his unit licensed nurse; an aide who cares for him, Dietary, PT, Social Worker, Activities Director, and anyone else involved with his care. Sometimes the DON will attend such meetings, other times they do not. In such a meeting, the patient is discussed and a Plan of Care is adjusted to meet the needs that have arisen.  I have found this to be very helpful IF the staff gets the plan of care actually in place on all three shifts.  Key in this are the licensed nurses on the unit caring for the patient.   They share the information in shift change meetings where each patient is discussed in report with licensed nurses and aide cae staff.

Basically; if this were me and I know you are not me, I would want to try this first before changing facilities.   It is possible you could run into the same issues even after having made a move.  NOTE:  Change in the patient response may take a bit of time, that usually doesn't happen overnight, so do give it a bit of time to see how any changes work out.

You are there in person, so you will have a feeling for what is best to be done.  You can always screen other facilities for a "Plan B," just in case, if needed. 

Best of luck, I hope all goes well step by step,

J.