6.30.2014

Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     As most any mom will tell you, the end of the school year is very busy.  Three teens, sporting events, graduations, three family birthdays, father's day, field trips, parties, etc... 

Ready for the Holidays

      However, life goes on and as expected, on June 12th the RN from neurology called my cell phone while I was taking Megan and some friends to dinner and a concert.  I assumed he was going to give me the results and conclusions made from all of this recent NPH (normal pressure hydrocephalus) testing my mom has been going through.
     Instead, it was a pretty big disappointment...  He explained that because they found that my mom had a UTI (urinary tract infection) and her Vitamin B levels were low, they concluded that they would have to repeat the blood work, gait testing, urinary culture and cognitive testing in three months...  THREE months...again!!  Not what I wanted to hear nor what I was expecting.  Just getting her there and back was a challenge the first time.
     To review, I was extremely hesitant to put my mom through this testing as it was.  Why?  Because even if they do determine she has NPH, the remedy is typically to put a shunt in her brain...to drain the fluid.  Extremely unlikely anyone could talk me into putting her through that.  (My mom's brain has already been through a cranial bypass for a stroke in the 1980s and from what I told that surgery and the repurcussions over time are what is likely at the heart of my mom's medical issues.)   However, I decided and was advised that the other information gained through this testing process would also serve to give us a very good representation of where my mom is at in the progression of her dementia.  You see, for my mom it is not just Alzheimer's.  So, it is the repurcussions from a stroke, the long term affects of the cranial bypass surgery to correct the stroke, and the resulting dementia/Alzheimer's.  As her neurologist says, there are at least three things going on.
     Oh, and guess what??  The nurse was also going to be leaving for a two week vacation the next day.  So, any chance for follow up questions was going to be all but gone for a couple of weeks...  Of course, he's allowed a vacation and has been nothing but helpful throughout this whole process, but I was disappointed knowing my main contact would not be reachable and I had to process what he was telling me "on the fly" since I was on my cell and extremely distracted. 
      All I could think about was how am I going to put my mom (and myself) through all of this testing again!!??  Three months is a loooong time for someone who is struggling!!!  All because of a UTI???  I know it can affect her health, but is it really so much so that they cannot determine anything else???  How disappointing!!!!  Her falls and extreme decline in her walking are what precipitated all of this, and now to have really no answers is a huge let down!!!
      All I could think to do was to ask for a prescription for occupational and physical therapy in the meantime which they did in fact send to me.  I still don't even know what to say about all this...

I Brought a Peony From My Yard
 
     On a much brighter note, my mom's BFF since her elementary days called and was wanting to pay a visit to my mom.  She spends the winters in Arizona and the summers here in Michigan.  As luck would have it, the day she was wanting to visit, my mom's senior community was having a Flag Day Picnic and celebration.  It also happened to be on my birthday, so I was happy to know my mom would be having some company while I was able to have my own fun!!  When Jane called me after their visit, she reported that they had a really nice time and that they were the last to leave the picnic.  I am soooo glad she was able to spend time with my mom when she was having one of her better days!  **UPDATE I just visited with my mom and found the picture below in the latest newsletter from her senior community.  Sorry, I know it's crooked and blurry because it's a picture of a picture...




How Do We Keep Her Safe??
 
     A couple days later, on June 16th the Med Team staff called me to tell me my mom was found on her kitchen floor.  She seemed ok, and I was able to decline an ER visit and EMS check based on what I was told.  That was Fall #8 this year, for those keeping track.
     Last Monday, June 23rd I again received a call (ironically same day of the week and approximately the same time) that my mom was again found on her kitchen floor.  The Med Team said she seemed ok.  However, my mom was complaining of back pain (which seems to be her new standard complaint not necessarily based on actual pain).  With some hesitation, we decided to have her checked out by EMS.  After speaking with them by telephone, they were comfortable with me declining an ER transport based on her evaluation and my being Power of Attorney.  If bones are not broken and there is no bleeding, I cannot justify these frequent ER trips where literally nothing has ever been discovered or found.  The one recent head injury and staples being the only exception, of course.
      Two minutes later, the Med Team called me back and said there was some "miscommunication" and that St. Joseph's (the hospital) was requesting my mom be brought in.  Sooooo, off I went to the ER...again.  I recognize people there.  I knew our nurse from last time.  It is not necessarily a place where I want to get to know people although she is a terrific nurse.  However, the place was again crazy busy!!  My mom did not even have a neck brace on and one look at her and I was 95 percent comfortable that she was ok.  IBy ok I mean no real repurcussions from this fall.  While I was at the ER I never did see a doctor come in nor did I speak to one.  They took my mom for a head CT and a couple hours later it was negative and she was discharged.  In my opinion, that trip was a complete waste of time, but my hands are tied at this point.  
     I should also mention that I completed my mom's Medicaid "Redetermination" paperwork which I receive once a year.  It is an extensive form requiring all kinds of financial information and paperwork be provided.  I always dread it.  In addition, this past January I received the same paperwork (six months earlier than usual).  I completed it just before our Winter Break and sent it in.  So, why was I receiving it again six months later when it is normally an annual thing.  When I called and asked why I was receiving this form again, they told me that their computers had inadvertently sent out the forms in January and that I did not need to complete them at that time.  Not only that, but nobody even reviewed them.  Sure would have been nice for someone to call or write to let us know it was a mistake.  Although I am grateful for my mom receiving this medical help, it sure is a lot to keep up with.  Frustrating, but I am at their mercy.  I got it in the mail with time to spare before the July 1st deadline. That is a big relief!
When I Arrived at the ER both Mom and Muffin Seemed Fine


Her Legs, However, Have Definitely Taken a Beating

And So We Wait...and I Wonder...

At Least We "Know" Rachel, the Nurse

But After Awhile, We Were Kicked Out in the Hall and Lost All of the Comforts of Our ER Room
To Make Way for a More Critical Patient...  Ugh!


     I am running out of answers so for now we are just taking it one day at a time!!
 


 

 

 

6.29.2014

Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     Our next, and last, testing appointment was June 4th.  I was to be at the hospital from 10:30 am - 4:00 pm for an MRI of my mom's spine and a written neurological type test.
     It was a long day for my mom, but it is easier than making two separate trips for those last two appointments and in the interest of time, remember we are trying to get this all done before my mom gets hurt again.  It helps soooo much to know that Sheri will have my mom dressed and ready for these appointments, and she also brings her to the car  with me before she leaves.  Makes this so much easier and allows us to be on time!   Remember in the good ol' days when my mom would be at The Don's apartment and I would try to "find" her and have to go way on the other side of the building to pick her up for an appointment.  I would be all over the three story, two wing building looking for her, and then we would have to do the loooong walk back to my car.  No doubt, I do miss those days for the fact that my mom had more energy and more time to socialize, the part I don't miss is the constant "where's mom today".  Bittersweet, of course.
     I can't emphasize enough how the repetitiveness has subsided with my mom as I mentioned before (possibly due to her seizure medication being increased).  No more "where are we going, where are we going, where are we going" or "which doctor are we seeing, which doctor are we seeing...".  The car ride has some simple conversation with way less repetition.
     We arrived just in time and shortly after we were taken back to change for the MRI.  This was quite a workout for me as my mom was not "standing up" very good and it was somewhat difficult to get her into the hospital gown, etc...  Silly me, I thought I would be reading magazines or shopping for awhile, but the spine MRI took only about 30 minutes so I was not able to sneak away to the shops at the "fancy hospital".
      Then, after we got dressed, we had almost two hours before our next appointment.  Ahhhhh....  Mom said she was hungry, so off to the fancy café we went.  This was the first time in all of our recent appointments that I made it all the way down "Main Street" to the café called "Henry's" (Henry Ford Hospital).  Oh my gosh, a guy was playing the grand piano ("Let It Go") in the atrium area and it was so nice!  Remember, it's a hospital!  So, I parked mom at a table not far from the piano player while I went and fetched our lunch.  Although my family had been there before, I had never actually eaten there even when my mom stayed at this same hospital for a week.     
The Walk Through the Fancy Hospital
(My Mom stayed in the room/window on the left three years ago.)
 
More of the hospital...
     It was soooooo nice!  There are several different counters.  Soup, sushi, pizza, salad, sandwiches, omelettes and probably a couple other things I don't remember.  Pretty quickly I decided this was about mom and knew she would like a nice cheesy omelette made to order.  To keep it simple, I got both of us turkey bacon and cheese egg white omelettes.  All of their omelettes are made with egg whites.  Everything available is healthy and nutritious.  I found this on their website:
On the Menu: Wellness
Henry's at Henry Ford West Bloomfield Hospital is a great destination for flavorful and healthy food; whether you dine on our beautiful campus or opt for carry-out.  In fact, Henry’s draws many patrons from surrounding communities and businesses.  Henry’s chefs create nutritious and gourmet food options that combine the healthiest of ingredients in deliciously inventive ways.  Many of our ingredients come from organic farms committed to healthy produce and sustainable agriculture practices, like the Chef’s Garden.  Henry’s has positively redefined the way people think about and experience hospital food.

I was too embarrassed to take too many pictures!!
 
Our Omelette Station/Chef

    My mom was thrilled with her omelette, toast and jelly.  It was very good and with the nice atmosphere and the piano playing -- I don't think I've had a more "romantic" meal with my mom!!  Ha!  No but seriously, in the context of all that has been going on with my mom, this was nice...  That is, until she started asking to go back to her apartment, which she thought was on the "first floor" of the building we were in.  Reality check.  I managed to drag our lunch out as long as possible, as we had a decent amount of time before our next appointment.  Eventually, the piano player took a break and we were off exploring a couple of the shops that I never seemed to find my way into during all of our other recent appointments.  I loved their gift shop and made a note to myself to come back while mom was getting her two hours of neurological testing.

You Can Catch a Glimpse of the Grand Piano...

      I then parked us in a lovely sitting area by a fireplace for a bit and just as I was starting to relax again....mom said she needed a restroom.  Let's just say that me, wheelchairs, public restrooms and my mom's walking not being at all great make for a not so good time!!!  It is difficult and awkward no matter how you go about it!!  I have always helped others with doors, etc. when someone has a wheelchair...but now I will be ever so much more helpful as can be!! 

My Two Minute Break...

Someone's Getting Fidgety...
     By now it was time for our appointment and we were taken care of quite quickly.  Again, I was looking forward to a possible retreat to the gift shops, but much to my dismay I was informed that I would also be asked many questions on behalf of my mom with regard to the neurological testing.  Sigh.  I guess I should have suspected as much.  This was similar to the testing she had at The University of Michigan some six or so years ago.  Answering many questions about the evolution of realizing my mom was having signs of Alzheimer's and dementia.  To be honest, parts of the questioning were very painful as many questions go into depth and involve going back ten or so years ago.  Also, questions of my grandparents health and family history.  It was a bit overwhelming going back down that road and realizing how long that road has actually been with my mom and all of her various health issues and life changes.  When you are as involved as I am on a day-to-day basis, you can't help but sometimes lose perspective of how very long the road has been.
 
Yep...
     Meanwhile, my mom was in another room getting some basic paper and pencil testing done.  I suspect that did not go very well, but we shall see.  At this appointment, I also learned that my mom tested positive for a UTI.  You would not believe how difficult it was for us to be able to test my mom to find out this information.  Not good.  The only good news is, she started ten days of antibiotics that Thursday, and after visiting her a couple days later, I am certain she is and will continue to feel better as a result.  Until recently, my mom was taking a preventative medication in an attempt to ward off a UTI.  Well, the doctors decided to take her off of that and now we have our first (known) UTI in the almost three years that she has lived at the senior community.  My mom's Vitamin B levels were also low so they have started her on a regimen of Vitamin B.
     Next, I am told that several doctors will be meeting to review my mom's test results around June 11th.  I was told they would be getting in touch with me after that, and I am uncertain whether that means another meeting or just a phone consult.  Meanwhile, my kids were wrapping up their last week of school and things were just busy busy busy!
     Of course. we continue to visit with my mom and there continues to be good and not so good days.  The staff now knows that the wheelchair is available for those days when it is needed.  As I mentioned before, it is interesting that my mom has never even questioned using a wheelchair.  She seems very content to be driven around, and I'm sure it is much easier on her.  So, of course, the only one having a hard time adjusting to this trend towards the wheelchair is...me!!  I am also concerned because I can already see that some of the staff will be using the wheelchair to make their job easier.  No doubt, it is much quicker to get my mom to and from the dining room in the wheelchair.  Saturday when I was there, the aide asked her if she wanted to walk or use the wheelchair.  My mom said the wheelchair.  I "let it go".  I am very aware and staff has been informed to keep my mom walking as long as safely possible.  At this point, it very well could be that using her walker while in the apartment, and the wheelchair for longer distances becomes our new normal.  That seems to be what is going on and in the Med Team's defense (which I do not normally take), the dining room is quite a long walk for my mom at this point.
 

     Lots of changes with me also having turned the ringer off on her phone, I no longer have those occasional morning check ins with my mom and haven't in a few months.  Just when I was getting used to her not calling me, now I can't really even call her.  Safety is key at this point, and the thought of her rushing to answer the phone or struggling to walk is not what's best for her and may very well have caused some of her "falls".  I do call Sheri's cell phone for updates and am in touch with her on a regular basis.  So many changes over these last weeks, months and years.
     Thanks for stopping by...I hope to have another update perhaps even by tomorrow!!



Grandma and Megan
 
She Always Thinks I'm Taking a Video...
so she usually "thanks me" which is nice!!
 

The Newest Piece of Furniture...
 
 
 
 
 

6.02.2014

Monday Memories With My Mom - Update #3

The Adventures of Caring for a Mom With Alzheimer's Disease
     Over the last few months, one thing has become increasingly clear and that is that my mom is one fall away from another head injury or a fractured or broken bone.  That is what I am desperately trying to avoid!  (Everybody knock on wood right now!)  I breathe a sigh of relief every few hours that go by if I don't receive an emergency call.  Truth is, I am most relaxed between 8-11:30 am each day when I know Sheri is there taking care of my mom!
     On Mother's Day (the day after the Frozen movie), Kristin and I made our way back to my mom's for another visit and to bring some gifts.  We scored major points with my mom (not that I needed any -- I have plenty!) by bringing her a Vernors (Detroit's famous ginger ale) Slurpee from 7-Eleven.  It is a new Slurpee flavor and we knew she would like it and she did!  We also gave her a new sweater and robe and nightgown.  She liked it all and since it was such a nice day outside we decided to give the wheelchair a test drive and take Grandma outside for some fresh air!  Kristin thinks the wheelchair is pretty cool and interestingly my mom has not once complained about getting into a wheelchair.  We forgot to grab Grandma's sunglasses on the way out, so it may look like she is mad, but she is actually squinting and can't see a thing!  Kristin was very helpful and we had a nice visit!  


 



     The next morning, on Monday, I met with the doctor at my mom's senior community and brought him up to date on my mom's health, falls, and the NPH testing she is in the midst of. He was supportive and understood.  
      Then on Tuesday, I was back to pick up my mom for the "Gaitrite" (walking) test at the fancy hospital.  Interestingly, I got a call when I arrived in my mom's parking lot asking if I wanted to move the test to June 4th (the date of her last two tests).  They are nice about trying to consolidate appointments, but since I was already there and I don't know where my mom's health will be from one day to the next, I decided to continue with the day's appointment so I could check one more off of the list.  This time I had Sheri and the wheelchair, so getting her to the car was a breeze.  Getting her into the car is a bit difficult as she seems a bit weak and not as able to boost herself into position.
     On the way, I received a text from my brother saying he was going to visit my mom.  (He works a 4-day work week, rotating days off.)   When I stopped for a light, I texted him to come later since I was taking her for testing.  The drive to this hospital is about 30 minutes and about 15 minutes after I texted him it happened...  I got a flat tire!!  A totally flat tire when I was only a half mile from the hospital!  Luckily I was able to pull into a condominium complex off of the busy road!!  My mom was kind of funny as she sensed my concern and mumblings under my breath!  I called my brother (afterall he was going to see my mom anyways!!?) because I suspected he would not be too far from where I was.  He came and rescued us.  We got my mom into his car and I drove to the appointment while he stayed back with my car and put the spare tire on for me!  In the end, I was barely 30 minutes late for the appointment and they were understanding of our dilemma and took us right away.

With the Potholes Around...it was bound to happen!

     This testing involved my mom walking with little to no assistance down a long floor mat
hooked up to a computer to measure my mom's walking.  I was surprised she did pretty well with the nurse holding only one of her hands.  Of course, "Muffin" was her incentive to walk to the end.  She had to do it three times and then we were done!  The whole thing took less than 15 minutes. 
     Now, I initially had thoughts of walking my mom through the shops and hospital, but now I had my tire to deal with.  Shortly after we were done, my brother drove my car up to the hospital and took my mom back to her apartment in his car while I went and got my tire fixed.  
     Soooo glad my brother rescued us and was off work that day!!