Monday Memories With My Mom - Part Two

The Adventures of Caring for a Mom With Alzheimer's Disease
     So, the morning of June 7th I had set my iPhone alarm and surprisingly my mom apparently slept through the night.  At 7 am she was still sleeping and no staff had appeared.  By 7:10 am med staff came in and gave my mom her medication in bed.  That is all they did.  This was just the med person.  I then made my mom aware I was there and had spent the night.  She asked if I had a fight with my husband (Ha!).  She remained lazily in bed and I took a quick shower.
     8:15 am...my mom had fallen back asleep in bed and still I sat wondering where the people that were to assist her before breakfast were??  Breakfast starts at 8 am and ends shortly after 9 am.  My frustration was growing.  Medicine at 7 am and then nothing for another hour and a half.  I telephoned my off site area supervisor contact at 8:30 am and left a voicemail.  Interestingly, at 8:40 am a staff member peeked in my mom's apartment and said "they're coming hun".  (Yeah, right!?)  At 8:50 am Tina came in and seemed to be faking some pleasantries...  Oh, sorry I'm late Mary....  Running a little behind today....  At the risk of sounding cynical, I wasn't buying it and if I hadn't made my phone call I don't know when anyone would have shown up.  By 9:02 am they left for breakfast.  Ideally, you are supposed to be at breakfast by 9 am, but they do leave food out for stragglers.
      All this time, I had to keep myself from helping my mom or interfering any more than I already was.  It was the only way to see how things are happening around there.

Fell Back Asleep

Where Have These Escorts Been...and Where Will They Go If I Leave??

    I then observed (like a spy!), my mom standing at the breakfast table for awhile.  Finally, the wait staff asked what she was doing.  She said she was waiting for her food.  Unfortunately, breakfast is continental...serve yourself and they told her that.  She then went to the counter, with no walker.  (It was a bit startling to watch, but I made myself just observe...) 

Mom...Why are you just standing there?

Yikes, You Just Fell Three Times and Now No Walker?

     My mom then put some food in her walker and appeared to be leaving.  Wait staff said, "Mary, where are you going?"  She said, back to her apartment.  Then, staff told my mom she was supposed to wait for her escort (you could tell she is not normally asked to stay and wait for her escort).  She sat back down and ate.  All the while, I was observing from the balcony.  Finally, I went to the dining room and sat behind her and observed a few more minutes.  A med staff member talked to me for a bit.  I told her some of what was going on with my mom.  I then decided to join my mom and the ladies at the table.  I quickly noticed my mom had nothing to drink.  Typically, the drinks are brought to the residents.  After I mentioned it, the wait staff asked if my mom wanted her cranberry/orange juice cocktail.  Ugh!!  (Does she fall because she is dehydrated?)  A bit later, her escort appeared.  She told me how my mom tried to leave.  I was not terribly sympathetic to her as nobody seems to have the common sense to "cue" my mom.  Like, "Mary go get your breakfast and then you can sit down." or whatever.  I let them work their way back to my mom's apartment.  My brother coincidentally was in the area and stopped by. 
     In the hallway, we were told by staff that they had taken my mom directly to the exercise class right from the dining room (they are both located on the lower level).  I then tried to bring my brother up to speed on some things and the lack of assistance my mom was getting.  While we were talking, the staff came to tell me they had taken her to exercise class.  Then, at the same time, my mom reappeared in the hallway heading back to her apartment.  My brother and I helped redirect my mom to go back to the class (with the escort).  My mom said "nobody came".  We told her it was because she was early.  The staff had delivered my mom to the exercise room 20 minutes before the class was to start.  That is too early.  You can't leave someone with no sense of time alone in an exercise room for 20 minutes.  She has no idea if she is early or late or if there is even going to be a class.  So frustrating.  I am guessing this is what happened when they said she had left the class in my Part One post earlier today.
     After 10:30 am I peeked down to the exercise class.  It was not yet over.  I waited for my mom in her apartment.  She appeared back in the apartment about 10:45 am...with nobody escorting her!  I was amazed that after they knew I was there watching and communicating with their supervisors (I assume they figured that out), and that they STILL are not doing their job!? 
     Don't get me wrong...I can absolutely sympathize with their job.  It's tough and demanding and probably thankless and underpaid.  I have always been very nice to these staff members, but now I am looking at them with distrust and some anger.  Worse yet, my own brother told me that he thinks the staff will do better for awhile and then as soon as I stop looking, or their bosses stop looking, they will stop doing their job again.  I guess this is human nature!?  Unfortunately, my mom's livelihood depends on them doing their job...all of the time.
     I then tried to check out my mom's injuries from the falls.  She was banged up, but I guess it could be worse.  I asked her if she wanted the yogurt she had brought back from breakfast.  She did.

Not Pretty...But Could Probably Be Worse

and then this started happening....

     After sitting with her for awhile, I quickly realized that I could be there the rest of my life and much of the time it would be about as useful as watching paint dry.  I had things to do and places to go.  My brother had come and gone.  My husband wanted me to meet him to look at some decking ideas.  I was exhausted.  As fate would dictate, and as my mom was dozing off, this email message popped up on my phone...

     An email with the subject line reading "Where Are The Alzheimer's Caregiver Helpers?"   I could have broke down right then and there as I was just wondering the exact same thing...  (I would love if you clicked on the link and read the article, particularly if you have a friend or family member in this situation.)  By then it was noon, and instead of breaking down right then and there, I pulled myself together, gave my mom a kiss goodbye, and went on with my day!!  Feeling helpless.
The Day I Had to Take Away the Scotch Tape
     On Monday, June 10th I arrived at 8 am to find my mom sitting on the couch...in wet pants.  I may have woke her up when I came in.  She said she had not gone to breakfast.  As if I was not already on heightened alert, this is what I found on my mom's elbow...and knee...  For the most part, it is tissues with tons of Scotch tape.  Tape that I had to peel off my mom's arm so that her scrapes could properly get some air and heal.  Why did nobody on staff see or question this???  I had not been there for two days...  My heart was aching...my head was spinning...  So pathetic.  Last year all scissors had to go.  This day, I had no choice but to take away the tape!  Did the staff not see this?  Do people have common sense or compassion any more?

Not Good..

Not Good At All !!!!
      Since breakfast starts at 8 am, and nobody came in for 50 minutes...I called the off site Medicaid supervisor, Debra, at 8:50 am.  At 9 am, while I was on the phone with her explaining my dissatisfaction, Tina came in and stood by the door and said "Come on, Mary".  At first she did not see me also sitting there.  I told Tina that my mom was "wet".  All the while I remained on the phone with the supervisor.  Tina then got my mom dressed.  She would not have known my mom was wet if I had not told her.  If I was a betting girl, I would bet my mom slept on the couch through the night...in her clothes.  A few minutes later the medication girl came and gave my mom her pills.   I went on my mom's balcony to continue my conversation with the supervisor.  I was on the phone with her for about an hour.  She was apologetic and appeared to be taking notes.  She added a "tray set up" to my mom's breakfast services when I told her she did not initially get her own breakfast.  We "tweaked" my mom's "care plan", but for the most part the plan that was already in place is not being carried out.  After that conversation, I could not stay and left at 9:20 am.  

I think I'm done with the pop...3 cans at the same time

     On June 12th, I touched base with my Area Agency on Aging case manager.  She knows I am having difficulties with the staff.  She wants to be kept informed as there are measures in place to make record of services not being provided.  She is going on maternity leave in a week.  I will be assigned another case manager in her absence.  I also spoke again with Debra.  I wanted to know who my key contact person should be at the Med Team.  She did not give me a straight answer and said anyone could help.  I was hoping to hear some kind of good news about my situation.  Instead, I was told that ultimately all they could do is "spot checks".  I did learn, however, that staff has permission to get my mom from Don's room for meals.  Normally, they are not supposed to go to other resident's apartments.  We are tweaking things, but I still feel and told her that even the basics are not happening and that common sense is not being exercised.  She has said that their staff cannot work one on one with my mom.  I get that.  However, I told her I had not yet seen a 24 hour or 48 hour period where even my mom's meal needs were being met.  She apologized, but was a bit dismissive.  I still am distrusting and unsure.
     On June 14th, Kristin had a dental appointment not too far from my mom's place.  After her appointment, we arrived at 8:50 am and my mom was not in her apartment.  I sent Kristin as my spy to see if her Grandma was in the dining room while I looked around the apartment for signs of improvement.  I was slightly encouraged to find my mom and Kristin coming back to the apartment shortly thereafter.  Unfortunately, her only escort was Kristin, but it appeared she had been to breakfast as she had a covered travel juice cup in her basket.  She also was dressed pretty good and her hair looked ok.
     I breathed a small sigh of relief hoping perhaps my mom had been looked after that morning.  At 9:45 am Tina came in with my moms pills.  (Why are pills at 7 am Friday and almost 10 am another day??)  Kristin convinced my mom she should get her nails done.  She has not wanted them done in a long time. 

The Girls...Together Again
A Hopeful Sign...the Salon is Back in Business
     At 9:52 am we walked my mom to the exercise class and waited with her and two other women for the class to start.  Once it did, Kristin and I said our goodbyes.  I was at first discouraged that they did not escort her to exercise class (we did), but then realized we had made a plan for Fridays to be no exercise and instead she was to get an escort to the evening movie at 7 pm. 
     So, when I called my mom that night at 7:45 pm and she was not at the movie and said she was in her pajamas, I was again a bit discouraged.
     This, my friends, is the story of only part of my life these last few weeks.  My kids are now home for the summer.  Things are busy, but I am determined to try to work with these people and get things back to the way they should be and the way they were.  I cannot properly evaluate my mom unless I know they are properly giving her the assistance she needs.
     Any advice or words of wisdom are, as always, welcomed and appreciated! 
Thanks for following -- you people are the best!!!



Jennifer said...

AHHHHHHHHHHHHHHHHHH Doesn't it just make you want to scream??? It's not like you are asking for the moon. You're asking that her needs to met! Is this facility part of a "chain"? Can you speak with someone higher up? I too agree that the caregivers have a difficult job and are most likely under paid. However, that's not the fault of the residents!

Rick Watson said...

I saw that you are following my blogbuddy Yaya, so I started following you.

Arlene - Caregiver ordinaire said...

Hi Cindy - My heart broke when I read this post. I remember how stressful it was to be in TX, wondering what my Momma was getting into in WI. I've not had any experience with assisted living. A couple of suggestions - and they are truly only suggestions from someone with no experience.... so take them with a grain of salt. One of my friends at work here had her Mom in assisted living and they hired a companion to stay with her. This worked very well for their family. The companion helped with dressing, morning and night routines and was paid to work one on one with her Mom. Her Mom's health improved a lot with that help. You might price compare the facility charge with hiring externally. Does the facility allow monitors? TX does. It's controversial, but I use one at home with Mom too. It's a comfort to me and right now that's worth a lot. Momma qualified for a state program 'voucher' - and we could use it to hire anyone we wanted to for Mom's daily living activity assistance. That's how Theresa came about at our house. I think the thing that's hardest right now is judging the progression of this illness. Change is the only contstant. You are such a good daughter! I'm proud of you for standing up for your Mom. I love your courage!