Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     Well, this past week was a very "mom" week for me.  Often, all of the things that go into caring for her are like a part-time job.  As I indicated in my last post (below), a meeting was set up with the supervisor of the Med Team, Executive Director of her facility our case manager from the Area Agency on Aging last Tuesday. 
     Interestingly, when I went upstairs waiting for the conference room and the others, look who I found hanging out on the second floor sitting in the sun from the skylight above... 

That's right -- The Don!  Seems every time I say that they don't see much of each other anymore...they see each other!  However, if you ask my mom she will confidently say that she never sees him anymore!  That's her story and she's sticking to it -- for now!
     I came to the meeting with some notes and a typed up Care Plan for my mom...virtually the same care plan that was outlined over a year ago.  I guess the reason I was a bit nervous is that I was not sure if the staff would immediately go on the "defense" and try to deny my claims with regard to lack of care. 
     It wasn't long before I was leading everyone through the details of my mom's care and then giving specific examples of the care that is not being given, being given incorrectly or is inconsistently being given.  They listened and primarily the Med Team supervisor would occasionally make comments or ask questions.  She was not defensive and did not deny any of my claims.  For that I was relieved.  
     I have to admit, I did get emotionally tearful when I recounted how it was 90 degrees in my mom's apartment recently and how my kids could not understand how come the staff did not help their Grandma.  They were sympathetic, but I was disappointed that I didn't quite make it through the meeting without getting emotional....
     During the meeting, it was confirmed that the time and expense allotted by Medicaid to cover the necessary care was more than adequate.  My Agency on Aging care manager suggested that the Med Team staff develop a checklist to be kept in my mom's apartment where the staff initials each task throughout the day as it is completed.  Also, each staff member of the Med Team is supposed to sign a copy of my mom's Care Plan so they cannot say they are unaware of it.  It is also posted in two locations in my mom's apartment (and has been for over a year!!)  I will be looking for these improvements soon.
     Remember, things were going relatively smoothly except for the last 6-9 months or so!! 
     I told them my frustrations with the communication, the turnover of staff, the unreturned phone calls, messages not being shared, etc...  I also complimented a few things and some of the recent improvements I have seen signs of. 
     In the end, I think everyone "gets it"!  Changes need to be made.  I felt better just saying my peace to everyone and knowing that now, nobody can claim ignorance.  If I have issues in the coming weeks, I am to contact my Agency on Aging case manager as she is now on site and having regular meetings with the staff.  Again, I definitely get the impression that there are several of these similar meetings taking place with other families.  I am hopeful and have already seen signs of improvement.  Most importantly, my mom has just looked and seemed better.  As I've always said, when she gets the care she does okay.
     When I went back to her apartment, I wanted to see if any of those snacks I had left for my mom were still there.  They were not...  She ate them all as I expected!!  The good news is...she ate them all.  The bad news is...she ate them all.  (Except for the ones I hid in a cupboard.)  I got a bag out while I was there and she ate it immediately.  This has always been the problem with me getting her any type of food or snacks.  I only did it this time out of concern for her not eating in the dining room, i.e. leaving before the meal is served.

 

     My mom was also reviewing the procedures for the practice Fire Drill they were going to have that day.  I have never been there during their practices, but I am sure my mom was anxious about it as the alarms probably scare the residents.  I don't even want to think about an emergency like that!!  I have talked to her about it before and told her that she always has to act as though it was "real" even though it is scary.  She seems to understand, but who knows how any of us would react in a real emergency, particularly my mom.

     That same night, the Condominium Association where my mom previously lived was having a Special Meeting with regard to changing the Master Deed to limit the amount of units that could be rented.  Since there is always the possibility that we may want to rent my mom's condo in the future, I thought I had better attend the informational meeting.  It ended up being a good thing that I attended, and the attorney who was helping run the meeting ended up giving me what I think was some good advice on how to handle things in our particular situation.  It was a long meeting with lots of residents having questions and not necessarily understanding the answers so it took longer than I would have liked (they always do!).  That was a particularly long mom kind of day.
     I had scheduled a doctor appointment for my mom this past Friday with her primary care physician.  I was pleasantly surprised to see this when I arrived to pick her up...........

 

     The facility installed a lockbox on my mom's thermostat.  I knew they had them within the building itself, but did not know they would do that for us.  Maybe it was my tears...  I am grateful and left a message thanking the Executive Director.

     I was also glad that my mom was dressed decently and seemed to be more lucid than I have seen her recently.  This made me soooooo happy!!  I had a morning where I was able to have (almost) normal conversations with my mom on the drive to the doctor.  We both got a laugh that when I went to buckle her, "Muffin" accidentally got buckled in, too!!!  We decided Muffin would be safer that way!!! 

 

     The repetition on the drive was not too bad.  Her anxiety level did not seem particularly high and she "knew" the doctor she was going to and that it was for a checkup.  Needless to say, I was elated that on this day the drive was actually pleasant.  She was, though, very interested on what roads we were on and what road her doctor was on.  While I am grateful things were going well, it will always make me sad that when we drive right past my subdivision and many landmarks that my mom used to know so well, she does not recognize any of them, although she does read the various streets and signs.

     Things were going so well, but then we waited AN HOUR AND FIFTEEN MINUTES before we were taken back to be seen by the doctor!!!!  Thank God my mom was not overly agitated and mostly sat calmly while we waited.  I teased the nurse that she was lucky my mom wasn't having a bad day!!!  In the waiting room, my mom was more fascinated by the address label on the magazine than she was the actual magazine.  The doctor's office happens to be on a street that was a major crossroad right by my mom's condo residence.  I think she kind of knows it.

 

     I hate that I do most of the updating and questioning during the exam.  My mom sat silently, only occasionally answering questions when asked. 

 

     I updated the doctor on her falls and frequent sleepiness.  I told him that she slouches on her couch and often falls asleep there.  I even asked if he might be able to write a prescription for a Geri Chair like my friend Arlene at Momma n Me has for her mom.  He did write the prescription, so I will be looking to see if that is an option for us and if my mom's insurance will allow us to rent or get one. 

    The doctor said he does not need to see us for six months.  Her neurologist also has been saying four months or more.  This, to me, is in response to the fact that there is not much else they can do that we are not already doing.  He drew some blood from my mom to see if her sleepiness could be a result of her levels of medication.  Or, just a sign that she is entering that phase of the disease where there is more and more sleep (my words not his).  This is another reason why I'm working so hard to get the staff on track -- I can't properly evaluate my mom unless I KNOW she is properly getting the care and medications.

     By the time we left the doctor's office it had been three hours since we left my mom's place -- ugh!  We were both hungry, but rather than going out I got us each a sandwich and we ate in the car.  I really really wanted to get my mom's hair trimmed.  She has not had a cut since the day she cut her own hair super short.  I think she does know what she did that day and is somewhat traumatized by it.  She occasionally mentions how she is glad I took her scissors away.  My mom also frequently says, "I look like a short fat man".  That all started the day she cut her hair short.  I went to the Great Clips that I take my kids to sometimes.  I got lucky -- there was only one person ahead of me and I got the girl who does my son's hair -- she is good and super quick!  She immediately understood what was going on with my mom and did all she could to make it as comfortable for her as possible.  She gave her a great trim and answered all of my mom's questions appropriately.  At the end, my mom said "what's your name again"?  "I like you Andrea".  Andrea got a very big tip from us!!

 

 

     Yes, of course, a slushie was also purchased along the way.  My mom had quite a day!!!  I should also note that by the time we left the doctor appointment, my mom was more like she usually is -- lots of questions and repetition and not so much conversation.  By the time we got her back to her apartment, we were both tired!!

 

     I got her settled in, turned on Channel 4, and we said our goodbyes. 

Special thanks to everyone who gave their support!!