Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     So, the day after my last post I received a call from the Area Agency on Aging care manager.  She said they would like to get my mom a "private duty" aide to help my mom in the mornings.  It would be someone from the same Med Team company, but the person would work exclusively with my mom in the mornings.  Get her up and dressed, take her to breakfast, take her to exercise class, and maybe to lunch -- something like four hours.  After discussing a few details, I said I thought it would be great.  My only real initial concern is that the person be there early enough so that my mom doesn't get up on her own and start getting dressed and ready.  We agreed we would start this in the next day or two.  We would tweak the timing as necessary.
     I thanked her and told her I was grateful to start seeing some positive changes.  It's still hard to get too excited, as past history has made me a bit distrustful. 
     I also needed to bring some supplies to my mom last Thursday (Halloween).  My mom was not in her apartment which allowed me to tidy up and look around.  I was curious if this new "private duty" person had started yet.  I went to one of the other "spying" vantage points and saw my mom at lunch in the dining room.

 

     Upon closer look, it did appear a woman was seated with my mom who had a badge on.  I assumed she could very well have been the new aide, but I didn't want to intervene, especially if it was her first day with my mom.  A bit later I felt bad not at least saying hello to my mom.  I went down and gave her a kiss.  The aide woman was not there at that point.

 

 

 

     I learned that my mom was going to stay in the dining room as the Halloween Party was going to be starting soon.  Some days I would stay, but today that was my cue to leave (before getting trampled by walkers and wheelchairs, ghosts and goblins!).

 

     Then, Friday, after a long day and a night time high school football game, I received a call around 11:30 pm from the Med Team.  Yep, my mom had fallen...again!!  The girl said she was saying her "hip hurt", but she was able to walk and no blood (this time).  I was familiar with this particular aide who called and told her to feel free to call me again during the night if she got worse.  She was going to check on her a couple of times through the night.  I never heard back from her.  I talked to my mom on the phone in the morning and asked her how she felt.  Then I asked specifically how her hip felt.  She said it hurt, but now it doesn't hurt any more.  Then, later, she said it hurt.  So, yeah, the usual dilemma.  In the beginning, I wanted to rush her to the ER for every fall, and now I try to calmly wait and see how she does.  The ER would be upsetting, uncomfortable, confusing, and probably wouldn't be able to do much to help.  It's hard because she is barely able to communicate her own feelings. 

     In the meantime, I received this flyer in the mail.  Wow -- they're even having an informational session with the woman I have been meeting with to get my mom's care on track.  Yep, I signed up.  Although I have spoken with her several times already, I am interested to hear their formal introduction of exactly what it's all about.

 

 

 

 

     Yesterday, on the way to my dad's birthday dinner, me and my girls went to see my mom for ourselves.  I was a little disappointed that my mom's apartment seemed to be in a bit of disarray, her hair did not seem particularly clean, and she was looking a bit dissheveled.  However, nothing major that I could be too critical of.  I looked at her hip and asked her to walk around.  I saw no bruising and she walked fine.  Who knows!???? 

Trying to keep this post short and sweet as you guys have

 endured some long posts lately!!!

 

 

 

 

 

 

 

Margaritaville...in the D

     Over the summer, my husband was lucky enough to score some tickets for the Jimmy Buffett concert in Detroit, at Comerica Park.  Our relationship has history dating back to when Jimmy Buffett concerts were at a smaller outdoor venue, formerly known as Pine Knob.  When we were first dating, (which may have been over 20 years ago!!) I was able to score seats a couple rows from the stage for a few years.  We loved it!  As all parrotheads know, tailgating and pretending to be at a party in the tropics is always a good thing.

     We grabbed our good friends, Donna and Greg, former residents of Royal Palm Beach, Florida!!  (If I didn't ask you -- it's because you were up north!!) 

     First, we grabbed a yummy dinner at Bonefish and then headed for the concert.  I knew we were going to be pressed to find parking.  We did not have time to get there hours early and tailgate before the concert like a true parrothead would   Parking was at a premium and there was nothing to be found.  Thankfully, our friends had some connections and we were able to park on the sidewalk of a private empty lot and hangout with some real parrotheads. 

 

 

     Gotta love my buddy Greg who didn't even think twice about putting on the grass skirt I had picked up at the dollar store!!!

     After a cocktail or two, we headed to the concert.  Jackson Brown was the warm up band so we caught part of that -- not bad!!!  Oh, and those ominous looking clouds never did do anything!!!

 

     We had main floor tickets, or in this case "on the field" seats.  They were excellent and the crowd was fun as always!!  It had been awhile since we went on a real live fun date like this!!

     The moon was full, the weather was great!  Or is it, "The Weather is Here, Wish You Were Beautiful"!!!!???  It was great to be out, in the moonlight, just like old times!!!

 

Long live Jimmy!!!!  Thanks for the good times!!

 

 

When Your Heart Keeps Going In...One Direction

     Over the summer, and for the past year and a half or more, Megan has lived and breathed for the boy band -- One Direction.  You either know who they are -- or ya don't, but they are all the rage!!!!
     The band recently completed their "5 Seconds of Summer" tour.  Tickets for the one night concert went on sale over a year before the concert date in our part of the country -- and sold out immediately.  I kind of thought it was a "phase" and that the band would come and go out of Megan's life by the time the concert came.  Maybe she would move on to the next band that came along. 
     I was wrong -- instead her "LOVE" for them continued to grow!!  She follows them on every form of social media there is.  Many of our conversations turn into One Direction updates.  "You should see Liam's haircut" or "Guess who's birthday it is today"???  

 

     As the year went on and the July 12th concert date grew closer and closer, I realized just how badly she wanted to see them.  She had it bad and the tickets were long gone.  She never really begged for us to get her tickets or whined about it because she knew it was sold out.  However, she checked many sources for tickets and in the weeks leading up to the concert tried continually to win tickets on the radio.  There were days when our entire family was calling WAMP radio trying to be the right caller number.  Megan actually got close to winning several times.  I was surprised she was even able to get through.  I didn't want to discourage her, but I knew the odds were not the best!
     One interesting twist to all of this -- I used to work for the Owner of The Palace and distribute tickets for all concerts and events as well as monitor our corporate suite and all of those tickets!!  Back in the day, getting tickets to this event would not have been a problem.  Sadly, both my connections and my former boss are gone.  I had a few friends also trying to make connections for some tickets, but in the end those didn't work out either.  Obviously, I was not willing to pay thousands of dollars.
     Meanwhile, Megan's 16th Birthday was looming -- September 12th.  I knew the best thing we could give her for this special birthday was tickets to this concert.  Although we try (really!) not to over indulge our kids, seeing Megan staying up through the night to try to win tickets and continually looking for any means possible to get there finally got to us.  A day or so before the concert, she finally just asked a friend to get her a t-shirt from the concert.  My heart was breaking for her.  She realized her hopes of winning tickets were not to be.
     Before we knew it, it was the night before the concert.  No tickets were won -- the ticket fairy did not come to our door.  I convinced my husband we had to try to find her some tickets. 
     We jumped on the Internet and made some phone calls to people in our area trying to sell their tickets.  After only a few calls, we settled on somebody who said they could meet us with a "paper ticket".  It was rather late a night.  I made my husband handle it.  The whole thing was rather seedy to say the least.  The price for two tickets was way more than face value.  My husband paid cash and basically got two pieces of paper for it!

     We did not know if the seller was honest.  We only new they appeared to be.  They could very well have sold copies of the same paper ticket to several people. The only way to know for sure was to go to the concert and scan the ticket!!!
     My nerves were shot!!! 
     But now the fun part -- we presented a big card with the tickets inside to Megan early the next morning -- the morning of the concert!!  We told her she could invite whomever she wanted although we were pretty sure which friend she would choose.  She was shocked and thrilled and called her friend right away!  (We also had to tell her there was a small chance the tickets would not work -- can you imagine!!!!!?????)
     Our family was to attend a graduation party that night, but instead my husband offered to drive Megan and her friend to the concert so I could attend my BFF's son's graduation.  I was on pins and needles praying we did not get taken for a ride on the tickets.  Thankfully, the tickets were legitimate and the girls had the time of their lives!  Once I got a text saying the girls were at the concert, I could finally relax!!!
     This was her 16th birthday present -- no car, no big party -- just two tickets to see Liam, Harry, Niall, Zayn and Louis!!!!!

     Jacob and Kristin did their best to "fake" their jealousy, but the truth is they are not as big of fans as their big sister.  They were excited for Megan and we had fun at the graduation party!!

 

Sure, they weren't front row seats.  They weren't in the fancy suite.  But she was there.

Thanking your mom on Instagram for an amazing night -- priceless!!!!

 

 

 

 

Chicago...My Kind of Town

    Back in August (don't judge my tardiness...remember I'm determined to catch up on stuff not related to my mom), on a Tuesday night, my husband randomly says...  Remember how I wanted to take Jake to a Tiger game in Chicago?  Well, they're playing tomorrow and I'm thinking of going.  Say whaaaaat?  I mean, I can be as spontaneous as the next person, but really!? 
     To review, we did not go on a family vacation this past summer.  The closest thing was probably spending part of 4th of July weekend up north.  I don't think I ever went into this, but Megan had to take a "Personal Fitness" class from 8am-12 noon for the first six weeks of the summer.  Monday thru Friday and could not miss a class.  See, you may find, like we did, that if your kid happens to take a foreign language class and is in music, their schedule does not allow for the personal fitness requirement.  Thus, we got to pay for a summer class, drive her to it, and be stuck here for six weeks...  Lucky us!!  Then, of course, band and football start in August, Megan started a job in June, the husband was tearing up our deck and rebuilding (still is!) and for those reasons and more we were close to home all summer.
     So, because I was stir crazy I said if you're going then me and the girls are going, too!!!  After making last minute dog sitting arrangements with our neighbor, getting Megan excused from marching band, and my husband getting game tickets on Stub Hub, we kind of had a plan. 

     We left super early (like 4 or 5 am) to drive the 5 plus hours to Chicago and make it by game time.  We did stop for a quick breakfast and coffee on the road at the famous...Cracker Barrel!!

 

    

 

 

     Both of my husband's sisters used to live in Chicago.  One still does.  My husband and I have been to Chicago many times, but I realized rarely have we gone in the summer.  Family holiday visits were typically in the Fall and Winter it seems.  I was scrambling to try to come up with a plan to make sure me and the girls got to see the maximum amount of stuff in the minimum amount of time.  I made a list in the car that included things like "The Bean", Michigan Avenue, Lakeshore Drive, deep dish pizza, Garretts popcorn, the Apple store and shopping...  No art, science, museums or aquariums this trip... 

 

     We arrived by 1pm and parked right in the center of the city and the boys took the "L" to Cellular Field for the game. 

 

     Our first stop was Millennium Park.  Interestingly, my girls are always up for a "photo shoot".  We had a beautiful day and the park was active and pretty!!

 

     Meanwhile, the boys were sending us some shots of their fun at the baseball game.  The Tigers ended up winning that game and they had a great time!!!

 

 

 

Our first time taking some shots at "The Bean" (Cloud Gate)!!  Can you tell I don't do "selfies"

 

all the time, but some of us know exactly how to do it!!!!

 

 

 

 

We walked and we shopped and the girls got some clothes.  We

couldn't even resist stopping at this downtown Target which was also a lot of fun!!

 

 

 

 

Garrett Popcorn was also on our list and we had not eaten since breakfast.  I remembered Oprah (my bff?) talking about it and when we finally got there it did not disappointment!!  Yummy fresh carmel corn and cheese popcorn!!  This place probably always has a line, but it moved fairly quickly and was not too long when we were there.  Took a bunch of popcorn home and munched on some at Starbucks while we waited for the boys to meet up with us. 

Throughout the day we had been texting my husband's sister who had no idea we were in town.  Her office overlooks Millennium Park and luckily, she was able to suggest a pizza place and meet up with us for dinner.  I think it was Pizano's...  There's a couple of good ones.  She said she has actually gone on a "pizza tour" through Chicago before where they got to sample from each place.  Pizano's was her preference and it was good!!  It was nice to catch up with her -- the kids love their Aunt Jill!!

 

 

 

 

We knew that 8 pm was our witching hour.  That would get us back home by around 2 am.  My husband had to work the next day (believe it or not) and the kids also had some commitments.  That's what happens with poor planning!!!!

However, our seven spontaneous hours in Chicago were a lot of fun -- and it was nice to hang out with my girls for awhile!!!!

Chicago -- we'll be back -- and this time Mom will plan the trip!!!

 

 

 

 



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!!