When You Have to Question Your Loved One's Care

This week has been especially tough for us.  Not that any week is easy these days, but this was especially difficult.  So I'll start from the beginning, but the basic message is always double check people.  Even the best facility you put your loved one in has its flaws.

My mom has been living at an assisted living facility (ALF) since the end of May when she was released from the psychiatric hospital.  My younger sister and I spent a great deal of time checking out facilities before placing our mother in one.  We wanted to make sure she had the best care possible and this place looked like it was the best.  They are clean and seem to genuinely care about the residents.  It has the lowest resident to caregiver ratio of any facility we visited.  The day we moved her in we were so relieved and confident we could do no better.

Mom has had a few falls.  Every time until recently they've been able to explain what happened very quickly.  We discovered her shoes were simply too loose and led to falls.  I bought her new shoes and that seemed to solve the issue, although I am thinking of buying a slightly larger size because of a rub mark on her foot from them.  But more than two weeks ago she had a fall.  I was immediately told the next day by the Med-Tech on staff, but it had happened over the weekend and she did not know what exactly had happened.  She only knew that mom had a bruise on her right elbow and was refusing to sleep in her bed.  Mom said she was stuck in her bed somehow, but there was no incident report that could explain.  Last Friday (9/23/11) my mom was finally able to tell me which Med-Tech helped her so I could get an explanation.  Turns out she rolled out of bed the wrong way and got stuck between the wall and the bed.  I didn't think to make sure the bed was flush against the wall, so I blame myself for it happening, but I'm angry no one could tell me what happened for two weeks.

But fast forward to this Monday (9/26/11).  Mom had been acting strange so we had called the doctor to change her medication dosage on the previous Friday.  He didn't sign the order (he was at home and couldn't sign the sheet) so he called the facility personally to ask them to change the dosage and he would get them the order corrected on Monday morning.  On Monday I get a call telling me she's out of her anti-depressant Celexa.  I told them I really didn't want to go up there that day as I was busy (and the events of the previous Friday made me really wanting to avoid my mother).  But I was told she couldn't go without so I'd better get there fast.  So I called her doctor and had them call it in and dropped everything to pick it up and get it there in time.  But when I picked it up I started to think when did I last bring them this medication?  Initially I looked at my phone calendar and thought they shouldn't be out of her pills for another week.  Then I turned to my absolutely awesome organized notebook and discovered I had filled the previous prescription on 8/18/11, picked it up and delivered it to them on 8/19/11.  She should have run out 9 day previous by my calculations. Why were they just now calling me?  Is that why she's acting strange?

So I went up to the ALF and spoke with the director who told me she didn't know and the medical director was at the ER with a resident.  She said she didn't know where the records were kept, but showed me the September record that indicated my mother hadn't missed a single dose for the month of September.  I was promised a call on Tuesday once they could get the August record out to find out what happened.  I discovered while there she had only two pills of her Aricept.  They hadn't even mentioned she was low!

So I didn't get a call on Tuesday so I went up on Wednesday and demanded answers after taking my mother to her appointment with her psychiatrist (she was doing no better than she had been on the previous Friday).I was told the morning Med-Tech is the only one who knows where the records were kept and they had not had time to search for them, despite having 3 days in which to do so.  They assured me an answer by Thursday morning.  I mentioned that as Guardian I have to send a report to Adult Protective Services (APS) as required by my court appointed duties.  I noticed a sudden change in the Medical Director's demeanor.  They blew me off for 3 days and I think that's the first moment when she realized this wasn't going to just go away when I got busy or bored.

On Thursday morning I received no call so my younger sister (co-Guardian) headed up there to demand answers.  They (the two directors) were angry that they had to answer both of us and still had no answers to give us because we were taking up the time they had to investigate.  They must carry shovels with them everywhere they go to carry that around.  They demanded to only have one of us speak to them.  My sister quickly denied their request, and read them the riot act (did I mention she used to work in a nursing home and knows how they are supposed to do their jobs?).  They started to lay blame with the morning Med-Tech, who knew nothing about it.  But when my sister informed the Med-Tech they were trying to blame her the tech did say to my sister that she's never seen them get so upset about something so she's betting the problem will be resolved and will never happen again.  We will see.  The directors even tried to pit my sister and I against each other and claimed it was our miss-communication that was the problem.  She just firmly informed them we communicate incredibly well and assured them the problem did not lie with us.  I don't think I've ever been so impressed with my sister in my life as I was that day.  I really wish I could have been there to see it.

The directors promised answers by the following Monday (a week after I brought the issue to their attention).  Then on her way out my younger sister called the board in charge of ALF's to start an investigation.

Today we still have no answers and our mother's health is at stake.  If they started the medication late her recent mental decline could be caused by the addition of this drug.  If they were forgetting doses here and there that could be causing her mental decline.  I contact Chesapeake APS since our Guardianship reports go to them.  They told me how the procedure would work and that we had to contact Norfolk APS since they had jurisdiction.  I left messages, but haven't heard back yet.  The board in charge of ALFs has not returned my sister's messages either.  My mother's psychiatrist has been informed and they are watching to make sure it is handled.

I hope my mom's ALF uses this as a learning experience.  If a patient had died from their lack of proper medication protocols things would be far worse for them that what's going on now.  But they seem genuinely shocked that a family member would notice a mistake, which to them seems small.  I told my mother's case manager at the Community Services Board that the ALF must not realize who they are dealing with.  I sued for Guardianship and Conservatorship without a lawyer and did a better job than a lot of lawyers do according to the judge. Do they really think they can get anything past me?

Now I'm demanding they count every pill out for me when I'm there and counting the calendar days to figure out how many pills they've used.  I feel like I'm doing their job for them.  I even bathed my mom for them on Wednesday because she was just gross (although I know she can be difficult to convince to bathe so I'm not holding that against them).  I'm starting to wonder what exactly I pay them for.  Mom's doctor at the psyche hospital warned us that he didn't see good outcomes for mental patients at this ALF.  I'm starting to see what he was talking about.  I'm really hoping that we can just get them to fix this problem and we can go back to trusting them.  But trust is a hard thing to earn back.

I know that if my mother were able to understand what is going on, she would be thanking herself and my father every day for my expensive private grade school and public college education.  Now if I could just get paid for my expertise we'd be all set.