4.14.2014

Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     Stopped in for a visit with mom and this is what I found...pretty cozy, right!!??  And, the walker is right nearby...check and check!!!  Her staples have been out a week and her head is healing.  


I also found this, that Sheri must have posted on her refrigerator....


     Lord knows I could have used this "Certificate" about a month ago!!!  I'll take what I can get!!!  This is a program they are running at her American House senior facility.  My mom is also in physical therapy three days/week.  Fingers crossed.  Not long after my visit my mom was escorted off to lunch.  Yep, here's me nervously watching and spying from her apartment door as they escort her down the hall.  I wanted to see how she is walking...and I wanted to spy on the caregivers!!  I'm still nervous every time I leave my mom...
     Oh, and did I mention that the case manager from the Area Agency on Aging sent the list of skilled nursing facilities (a/k/a nursing homes) I requested after her last ER visit directly to...my mom!!!!???  I found the empty envelope.  I get all of my mom's "business" mail at my house. This was sent to her apartment.  Ugh!  You may recall I caught the case manager right before she left for a two and a half week vacation.  In fact, she is due to return today.   It would be interesting to know if my mom, who does not throw anything in the garbage, threw that list in the garbage!!!??  I can only hope if she did realize what it was that it provided an added incentive to use her walker!!!?? (Sorry, trying to look on the bright side!)
     I was going to post this morning, but thought I would add today's adventures to this post! Today, we were off to the neurologist for a check up!  It had been probably five months or so since we have been.  Between the terrible winter/snow and hibernation and then the three recent falls, this was one of my mom's only days out since January!!!  Good news -- she was not terribly agitated and seemed happy to be out and about.  It may have helped that when she asked where we were going I just said the doctor (instead of neurologist).  And, when she said "foot doctor", I just said, "yes". 
     To be honest, I have been anxious about this appointment because I realized I could not/would not leave this appointment without some firm guidance from the neurologist as to what the immediate future is likely to hold with regards to my mom and her walking and mobility in particular.  This made me nervous because her neurology appointments are rarely enlightening, informative, personable or helpful.  We just go to take care of business and improvements or useful advice are almost non-existent.   
     Fear not, as it appears my prayers were answered today, albeit in a small way.  Today, for whatever reason, the doctor had no intern with him and, for the first time since I can remember, he sat down in the exam room with us, computer and dictating machine in hand, and dictated notes and submitted information as I brought him up to speed on the numerous falls my mom has had, the nature of her injuries, and my concerns for the direction she is headed.  It was almost as if his demeanor was the complete opposite of our typical appointments.  He also observed my mom as he asked her to walk down the hallway.  Something I feel he should always do, but I have never known him do in the past.  (Once in awhile he will have her walk, but only in the super small exam room which is like two steps with the walker...)
      I told him I am a firm believer in the "use it or lose it" system when it comes to my mom and walking.  I wanted to confirm that he is also a believer.  I also told him I was afraid we may be at a crossroad, and I want to be sure to read the signs properly.   I shared with him the paperwork from the recent ER visits.  I made him aware that the falls have not been witnessed, for the most part.  He questions whether she is possibly having a seizure when they occur.  My mom is on medication for seizures related to her previous stroke and resulting surgery.
     He was firm and confident in a decision to increase the dosage of her seizure medication, and I agreed.  Meanwhile, he wrote a prescription for my mom to get an MRI from a neurologist who specializes in NPH (normal pressure hydrocephalus).  This makes me happy, as I did not even have to "prod" him on this and it is something I have secretly wanted to rule in or out for quite some time.  Her symptoms, particularly her "gait apraxia"/ walking, are indicative of possible NPH.  Before we go further, we need to know if that is what could be going on with my mom.  NPH can be treatable and depending on the situation, walking can improve.  Yes, it's weird that I'm excited to explore this possibility.  It's likely because with the vast majority of my mom's health issues, there is literally nothing that can be done. 
When the neurologist finally came in the room, my mom said, "You took a long time!"
(Another sign that "Mary's still got it"!!!
      Then, another order of business I have been dreading, I asked for a prescription for a wheelchair.  He did not hesitate as the falls alone would justify one.  However, just to be clear, my immediate intention is to only use it occasionally and when necessary.  Today, walking to and from my car, her apartment, the medical building, the doctor's appointment -- a wheelchair would have benefited all of us.  The patience it takes to get my mom to and fro is almost unbearable -- not to mention the nervousness of her stumbling in the parking lot with all the potholes around.  Physically, her feet do not seem to do what she wants them to, her steps are a small shuffle, she stops very often to ask questions, and she is extremely easily distracted by her surroundings.  Again, most of this is not "new", but in light of the recent falls I am much more on alert.  That said, I was also quite proud of my patience level today!
     After the appointment, which was loooong, I went to the drive thru and got my mom her beloved "icee" drink and a hamburger and fries as it was way past lunch time.  My mom was, again, fairly lucid and pretty funny.  This makes it soooo much easier for me and I really thought it could have gone the other way in light of the fact that she has not been "out" in a long time.
     Tomorrow I will call to try to schedule the MRI.  I hope it isn't one of those things where you have to wait weeks and weeks to get in.  I'm also in the midst of renewing my mom's paperwork and housing agreements with her senior facility.  Because she receives assistance, there is a lot of paperwork involved.  
Today -- On Our Way Back in...Drink and Muffin in hand!!
     My already long "to do" list is growing!!!!  I am pretty overwhelmed and my own doctor appointments and checkups are, as always, being brushed to the side.  However, obviously I need to get this taken care of with my mom and feel a definite sense of urgency as we are trying to avoid a fall and the ER at all costs!! 
I will keep this relatively short so I can post before the day is over!!!



p.s.  Several were interested in knowing more about the character on Days of Our Lives whose name my mom so clearly recalled last week.  "Rafe" was his name...and you may agree he is quite memorable!!!



"Rafe"



4.07.2014

Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     As I prepare this post late Sunday night, I first want to again thank all of you for your kind words and support.  There are a few of you who are walking this walk or have been in a similar situation and "get it".  Others are just nice compassionate people.  I appreciate all of your support as this is definitely the hardest thing I have ever had to do.  Taking care of my mom.  Completely switching roles.  Making decisions for someone who does not know what is best for them.  Taking away some independence.  Getting legal affairs in order.  Applying for necessary medical insurance and assistance.  Being mom to three teenagers at the same time.  The list goes on and on and that's just the stuff we can talk about in one post...
     However, I am happy to report that we stayed out of the E*******y Room this week!!! (insert applause).  I don't want to say the words...that's how nervous I am!!
     I was in touch with Sheri several times, and I visited my mom on Wednesday and Saturday.  On Wednesday, I was greeted by this sign on my mom's apartment complex door.  The dining room was closed as there was a flu bug going around the building.  For one second, I wanted to turn around and pretend I never came, but I had already had my flu shot and knew I needed to check on my mom!!  
    Right after I got there her lunch was delivered at 11:30 am.  Kind of early since she usually goes to lunch at 1:00 pm, but I asked her to come and eat it while it was still warm. My mom does not have a microwave and does not have use of her oven or stove.  It was Salisbury steak, mashed potatoes, corn and sherbet and she ate every last bit of it and every kernel of corn!!  The food is so-so and with them having to deliver to everyone it was 70s TV dinner style.  Honestly, if I was not there I doubt she would have eaten it and can almost guarantee she wouldn't have eaten it all.  A week of eating all meals in the apartment had to be a long week!!  They actually extended the closing to this past Saturday, which was the first day the dining room was back open.
     Sheri indicated there was one day that my mom showed signs of a flu bug.  Thankfully, they were moderate and did not last!!  Sheri also had a bug, but came in to help my mom because she said she was afraid they would not find anyone else.  
     Whilte I was there, I noticed my mom's staples had not yet been removed, so I followed up with the Med Team to make sure the home health nurse would be removing them soon.  After a few too many phone calls from me, I found out the nurse planned to remove them Thursday as she did not think they were quite ready on Tuesday when she was there.  Boy, I tell ya you really have to stay on top of all these things!!  

      As I sat with my mom, she was kind of dozing and we were watching TV (Channel 4, of course).  Days of Our Lives happened to be on...  My mom has watched for years and actually got me into Days of Our Lives when I was a teen.  Normally, my mom would be at lunch when it is on at 1:00 pm.  As we were watching quietly, at one point my mom said, "Is that Rafe?"  I said, "I'm not sure, I don't think so" (I always get him and another character, EJ, mixed up because they look similar to me and I hardly watch anymore.) Then, it hit me!!??  How did my mom remember the name "Rafe" (of all names) who is a fairly new character on the show, which she hardly ever sees anymore????  She is just full of surprises sometimes.  I can't tell you how rarely she retains any current information. A perfect example, she still denies knowing anything about a "Sheri" who helps her every morning for four hours seven days a week!!!??  Chalk one up for the mom for knowing Rafe!!!  (Of course, I secretly thought -- she isn't ready for a nursing home!!??)
     On Thursday, the home health nurse called me and indicated she was with my mom and going to remove her staples.  Sheri was also there, so I felt comfortable even though at one point I was going to try to be there with her.  Her head is healing nicely, but I would not say it's competely healed.  
     My mom is soooooooo overdue for a haircut, style and color!!!  She was already overdue because I had not wanted to bring her out in the extra nasty winter weather.  Once the weather gradually started getting nice, well then the "you know whats" happened three times...  I still have to wait on coloring her hair, but a cut and style is definitely on my "to do" list.  As luck would have it, my kids are also on Spring Break this week so it's busy!!
     On Saturday, me, my husband and Jacob all stopped in to check on my mom.  She was sitting comfortably reading something and no TV was on.  We chatted and my mom seemed pretty good.  The repetition has been at a minimum lately.  Really pretty good.  My husband said, "Mary, did you hear the Tigers won today?"  She was happy to hear that.  I talked to my mom a bit, and then told my hubby to stop playing with his phone and talk to my mom.  So, ya know what he said???  He said, "Mary the Tigers won today!" and then she said, "Yeah, I know one of you already told me that!!"  If you knew the usual drill, you would know why this is soooooo funny to me!!!  My mom simply does not usually have any short term memory left.  The Tiger news normally would have been "news" to her.  But not this day!!  I teased my husband for trying to pull a fast one on his mother-in-law!!


     A little while later, I asked my mom if she knew what the date was???  She studied her time/date clock I got for her a few years ago.  After a little effort she settled on April 5th.  I said, right!  Do you know what April 5th is?  She repeated the question and thought for a minute then said, "Grandma's Birthday?"  This, again, was quite surprising!!  I said, "right"!!!  Then, as my mom detected my surprise, she said "What do you think I'm an idiot?????"

  
     So, here I am back on the roller coaster riding along with my mom through the highs and lows, thrills and spills, sometimes holding on tight and sometimes throwing my arms up in the air just enjoying the ride!!!


4.01.2014

Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     I'm determined to not let these posts slip away again like I did during the holidays this past year....so I'm a day late which is better than weeks late, right!?
     Sadly, my news is not great.  After last week's post about my mom's second ER visit and head injury I was hoping we were done.  We were not.


Scenes From The ER
     Ironically, last Monday (after my post) I received another emergency call from the Med Team around 5:30 pm.  I was shocked...  I had been in communication with the Med Team staff throughout the day to put in place a home health nurse and some physical therapy for my mom. So, when I saw they were calling again I was really hoping it was a return phone call.  Instead, I was told that when they went to get my mom for dinner she was on the floor and then I was told she was "limp" when they picked her up.  They said they had to send her to the ER.  When I asked, they said they did not think she cut her head again. Unfortunately, the person on the phone is not usually right there with my mom and not always the staff member who found her.  So, after being in the ER on Friday, we were back again on Monday -- except I asked then to take her to a different hospital -- the one from recent ER trip #1.  This time, I called my husband and asked him to meet me at the hospital on his way home from work.  I just can't keep doing this alone.  He was there a couple minutes before me.  The ER was crazy busy.  More than any other time I've been there.  My mom seemed okay and was on a gurney in the hallway of the ER...with many others.  Not a pleasant experience, nowhere to really stand staff all over running back and forth.  A very nice young doctor came to evaluate my mom (with two interns).  I gave him the latest and my mom's medical history.  We waited and waited.  Another CT scan was done.  Some blood work was ordered.  My brother stopped in.  My husband and I went for a quick dinner.  They started an IV (which I quickly realized was crimped and had to have it fixed).  Me and my brother waited and waited, and finally got in an exam room.  Tested for UTI with negative results.  


Our Part of the Hallway
     The doctor expressed concern with my mom's decline and recent falls.  He strongly suggested she be in a nursing home setting.  I am not sure he understood that my mom was getting a lot of extra care in her current senior living situation.  I did not have the energy to break it down for him.  My brother agreed about getting her in a nursing home.  I cried.  The doctor sent in a social worker with brochures.  I cried.  He said he had no reason to admit her to the hospital.  He conferenced with another doctor by phone.  He said he could keep her overnight if it helped (clearly we were not going to find a nursing home at 12 am?).      No, no, no, and no!  This doctor was very nice.  He went out of his way.  He showed me the CT scan of my mom's brain as compared to a "normal" brain.  It is clear a lot is not working.  None of this is new information to me.  The only thing new is three falls -- one of which resulted in an injury.  Two of the falls, I probably would have picked her up, put her in a chair, got her some water, got her vitals checked and told her to make sure she uses her walker!


My Mom Liked the Sign "Call Don't Fall"
  My brother helped get my mom back to her apartment.  I decided to spend the night, terrified of another fall.  After watching Jimmy Fallon, my mom went to bed and stayed in bed. By 2am she was probably asleep.  I set my alarm for every hour through the night to make sure she was still in bed.  
Laughing Away at Jimmy Fallon
      At 8am Sheri came.  I filled her in while my mom was still sleeping.  I wanted her to sleep until at least 9 am which she did.  Sheri then got her ready for the day.  She had breakfast in her apartment.  She was tired but seemed okay.  I made lots of phone calls.  My concern was how am I going to leave her alone and not worry about another fall???  I can't afford and insurance does not cover round the clock care just because my mom fell.


Found Out Sheri Brings My Mom Treats!!!

White I Was There I Washed Muffin Again

I Went Back and Put Signs/Reminders All Over the Apartment

I Also Turned The Ringer Off on Her Phone to Reduce Her Fall Risk
(She rushes to the Phone Even When She is Across the Apartment)

Kristin Did Her Homework and Grandma's Nails

Are We at a Crossroad????
     Eventually, I went home, got a decent night sleep, and quickly realized that no matter what the doctor said, or what my brother thinks, the reality is that I cannot afford to privately pay for nursing home care for my mom (it's a minimum of $6,000/month).  I also do not think she requires it at the moment.  I know my mom and spend more time with her than the ER doctor or anyone else.  I am quickly finding that I may be in a situation of waiting for something worse to happen before she can get more help.  "The system" stinks.  I had a friend sit with my mom for two afternoons for my peace of mind.  Kristin and I stayed with her for four hours Saturday afternoon.  Sheri said she would sit with my mom, but when I checked with her supervisor I found out she is not allowed in the building unless she is under contract during working hours. There's a home health nurse checking in on my mom for a couple of visits, she is back in physical therapy three days a week, her staples will be removed soon, and I am trying not to worry.  It wasn't long before I realized I can't be there watching over my mom 24/7 to make sure she doesn't get hurt.  I am also realizing that I can't live from one emergency phone call to the next wondering and waiting, watching the clock when the phone rings.
     Meanwhile, that's exactly what I'm doing.  That and praying my mom isn't more seriously hurt while I wait, worry and wonder if we are at a crossroad...