The Adventures of Caring for a Mom With Alzheimer's Disease
I think we were to the reception desk at the doctor's office by 11:08 am or so. But let's not jump ahead. My mom was extreeeemely out of sorts. Like, more than the usual out of sorts. The whole drive was filled with, where are we going, what floor is he on, I'm in 147, 1st floor or lower level?, 147, Apartment 147, I'm in 147, first floor, 24847777064, right?what city am I in? I was extra alarmed that she kept saying what floor is he on? It was as if she thought we were in her building (but we were in a car). Then, while in the waiting room she kept saying, what are we waiting for?where is he?what floor is he on?I'm in 147, right?first floor, right?same floor as me.same floor as me.147.............................. (Think Dustin Hoffman, Rainman...)
We were called in about 5 minutes later (yay!), weight, blood pressure (a little higher than usual but ok), told the nurse I wanted him to look at my mom's knee(s) from the recent fall. I warned both the nurse and doctor that she was having a bad day. She also kept saying what do you want me to do now?now what do I do?... She also repeated her apartment number and a confused version of her old phone number to him as if repetitively reciting her name, rank and serial number in the military. Somehow.....in spite of being alarmed....I was staying calm and it wasn't bothering me as much as sometimes. I think I was just really trying to get inside of her brain and figure out what was making her like that, today, worse than usual. Did she not sleep? Was she lost and confused in her building for a long period of time? Was she nervous to be seeing the doctor? Did she not have her pills today? Etc...
The doctor was a bit concerned about her knees, said there was a little fluid on them, he checked all of her range of movement which was good. He had her walk down the hallway (without her walker). In the end, there was no need to do anything at this point. He took a decent amount of time with her and her repetitive chit chat. He also acknowledged that he knew I preferred being seen in this office and that he would put me on a priority list of a couple of patients that he schedules for that office. He was feeling my pain. He commented that my mom "looks so good". I said, it's deceiving, isn't it? (Also, she didn't look all that great but considering there was no time to freshen her up before the appointment...) We then waited a bit for the bone scan. I tried to pass the time by showing my mom pictures on my cell phone of the kids, etc... It is a good distraction, but most good distractions are just that -- momentary distractions until the next question or series of questions. The tech who did her bone scan was very nice and patient with my mom. To be honest, all I can think of when she gets tested for anything not related to neurology is....we already got waaaaay bigger problems than osteoporosis or cancer!! Just being honest here. And, of course, adding anything else to the list is NOT what we are looking or hoping for here!! Yet, I understand their place and I try to keep her current.
Let me break for a bit of good news -- it was a very nice day here in Michigan. Around 60 degrees and the sun was shining. This -- I can say -- makes all the difference in the world when it comes to escorting my mom around and driving long distances from my house to my mom's back to the doctor's, back to my moms. So, in spite of a not so fun start, my day was pretty much cleared for my mom. I thought I would take her to lunch, but then because she was having such a bad day, I thought it might be better to carry out some yummy carrot chicken soup and salad and bring it back to my house. This seemed like an extra good idea since I knew there was a 7-11 (read Slurpee time for Mom!) in the same shopping plaza. I parked close by in handicapped parking, fetched her a slurpee, fetched our lunch order, and headed back to my house. Many many many questions persisted. What road we were on? What city we were in? Where were we going? What do we do now? When I say repetitive I mean literally no break for answers, just constant repetition...
As we neared my house, it was clear she had no idea where we were, even when we were on my street and in front of my house. In fact, she kind of thought it was her house and said it was a bit "run down" (wait 'til my husband hears that!!). We left the walker in the car and I helped her into the house and got her seated at the table before I let "Lucky" the dog out to see her. (It happened to be Lucky's 3rd Birthday!!) Originally, I thought we would go out on the deck, but with every passing moment it became clear that taking extra time to wipe down the table and get her set up outside wasn't going to be a good idea. I had to have her focus on eating her soup many times. The Slurpee was all but gone. She told me many many times that I was her "BFF" and that she loved me and I was the best daughter. (Let the record show....lol!!!) I told her I thought her friend Jane was her BFF and she said she could have two BFFs... (Awwww....)
It did not take long to figure out there was not going to be any "relaxing" together at my house. I couldn't even get her to settle in front of the old standby tv... She had to go to the bathroom, forgot to go, then had to go again, etc... So, after guzzling my salad we headed back. Oh, she was also verrrrrrrry nervous about where is Muffin (the dog)? Where are my keys? Where is my walker? Even when they are right in front of her she asks those same questions so that's a losing battle, too.
Finally.....four hours later........we were back at my mom's apartment. I was hoping she would settle down on the couch and maybe even fall asleep right away. This was not to be. I soon realized my best bet of getting her to settle down was to leave so she would not have anyone to repeat things to. I wanted to stay until she fell asleep but that did not happen.
While there, I noticed a small white pill in her white pill cup. I took it out and after going in the sunlight read the small letters on it. A bit later, I typed the pill code into my phone to check which pill it was. I made the decision for her to take the pill right then with me. It was her anti-seizure medication. It is not to prevent what you may think of as a typical seizure...it is more to prevent her brain from getting "stuck" you might say. Stuck...........like how it was ALL DAY LONG on the same things......!!!! Later, I notified the medical staff by phone that they need to be vigilant about making sure my mom gets every pill when they are dispensing them. Of course, by the time I notified them the staff had changed to a whole shift of people....who may or may not give the message to the appropriate person.....................................................
I also think my mom became disoriented in her building and that is why she kept repeating her apartment number. I think she came and left Don's room a few times in the process of trying to get back to her own apartment. I think the reason my mom sometimes does not get to exercise class is because the staff cannot always find her right away either.
My energy for doing errands on the way home................well that energy was long drained out of me! Somehow, after a few short hours with my mom, I just wanted to go home and stare at the walls for a minute. So, I did...after I took Megan to get a Slurpee because she has a sore throat...time to be a mom to my other three kids!
Grab a cup of coffee and prepare to go on a little ride with me...
As I mentioned in my last post, I took my mom to a doctor's appointment this past Friday. They had called and noticed she was overdue for a dexa or "bone scan". On Fridays, her doctor sees patients at an office much closer to my house and very close to where my mom used to live. I prefer those appointments, but they are hard to get. You basically have to call the Monday before, first thing in the morning, and hope for the best.
As always, it does no good to try to prepare, put on a calendar, call, send smoke signals, make a sign, or anything else to tell my mom she has an appointment -- 99 percent of the time she will not be aware of it so I no longer bother.
Her appointment was 11 am. It was about a 45 minute drive from her current apartment to the appointment. I knew I should get to my mom's plenty early since she may not be in her apartment and I wanted to try to catch her before she headed to exercise class at 10 am. When I got to her apartment, almost all of the lights were on, but she was not home!! I peeked down at the exercise room -- people were gathering but she was not one of them. I headed to "the Don's" room which is in the opposite wing and second floor of the building. One of the Med Team staff saw me in the hallway and asked if I was looking for my mom. I said I was and asked if she knew if my mom was in "Don's room". She said she had just seen my mom in the hallway and pointed her back towards her apartment. I attempted to cut my mom off at the pass by rushing to the elevator and heading back to the first floor... Still couldn't find her. It's a three story building with two wings and elevators all over. I went to the Med Team office and asked if anyone could help me find her for a doctor's appointment. They got on their walkie talkies and tried to help. Meanwhile, I'm calling her apartment, trying to stay near her apartment in case she wanders back, etc... I also called the receptionist (who happened to be the Executive Director today) and she called Don's room for me since I do not have his phone number. He said she was not there. After a good 30 minutes of these shenanigans, one of the staff walked her from Don's apartment towards me. By then it was close to 10:30 am and I knew we would have to hurry to make our 11 am appointment. Of course, "hurry" is not something my mom does any more. |
| If I walk next to her, she walks slower...If I walk behind her she waits for me... so often I'm way in front encouraging her to keep walking!? |
We were called in about 5 minutes later (yay!), weight, blood pressure (a little higher than usual but ok), told the nurse I wanted him to look at my mom's knee(s) from the recent fall. I warned both the nurse and doctor that she was having a bad day. She also kept saying what do you want me to do now?now what do I do?... She also repeated her apartment number and a confused version of her old phone number to him as if repetitively reciting her name, rank and serial number in the military. Somehow.....in spite of being alarmed....I was staying calm and it wasn't bothering me as much as sometimes. I think I was just really trying to get inside of her brain and figure out what was making her like that, today, worse than usual. Did she not sleep? Was she lost and confused in her building for a long period of time? Was she nervous to be seeing the doctor? Did she not have her pills today? Etc...
The doctor was a bit concerned about her knees, said there was a little fluid on them, he checked all of her range of movement which was good. He had her walk down the hallway (without her walker). In the end, there was no need to do anything at this point. He took a decent amount of time with her and her repetitive chit chat. He also acknowledged that he knew I preferred being seen in this office and that he would put me on a priority list of a couple of patients that he schedules for that office. He was feeling my pain. He commented that my mom "looks so good". I said, it's deceiving, isn't it? (Also, she didn't look all that great but considering there was no time to freshen her up before the appointment...) We then waited a bit for the bone scan. I tried to pass the time by showing my mom pictures on my cell phone of the kids, etc... It is a good distraction, but most good distractions are just that -- momentary distractions until the next question or series of questions. The tech who did her bone scan was very nice and patient with my mom. To be honest, all I can think of when she gets tested for anything not related to neurology is....we already got waaaaay bigger problems than osteoporosis or cancer!! Just being honest here. And, of course, adding anything else to the list is NOT what we are looking or hoping for here!! Yet, I understand their place and I try to keep her current.
 |
| The Bone Scan |
As we neared my house, it was clear she had no idea where we were, even when we were on my street and in front of my house. In fact, she kind of thought it was her house and said it was a bit "run down" (wait 'til my husband hears that!!). We left the walker in the car and I helped her into the house and got her seated at the table before I let "Lucky" the dog out to see her. (It happened to be Lucky's 3rd Birthday!!) Originally, I thought we would go out on the deck, but with every passing moment it became clear that taking extra time to wipe down the table and get her set up outside wasn't going to be a good idea. I had to have her focus on eating her soup many times. The Slurpee was all but gone. She told me many many times that I was her "BFF" and that she loved me and I was the best daughter. (Let the record show....lol!!!) I told her I thought her friend Jane was her BFF and she said she could have two BFFs... (Awwww....)
 |
| Lunch at my house...with "Lucky" |
It did not take long to figure out there was not going to be any "relaxing" together at my house. I couldn't even get her to settle in front of the old standby tv... She had to go to the bathroom, forgot to go, then had to go again, etc... So, after guzzling my salad we headed back. Oh, she was also verrrrrrrry nervous about where is Muffin (the dog)? Where are my keys? Where is my walker? Even when they are right in front of her she asks those same questions so that's a losing battle, too.
 |
| Don't Judge -- But She was so wound up on the way back to her place I reclined her seat and even suggested she take deep breaths to try to relax her. None of it worked -- don't let the pictures fool you! |
While there, I noticed a small white pill in her white pill cup. I took it out and after going in the sunlight read the small letters on it. A bit later, I typed the pill code into my phone to check which pill it was. I made the decision for her to take the pill right then with me. It was her anti-seizure medication. It is not to prevent what you may think of as a typical seizure...it is more to prevent her brain from getting "stuck" you might say. Stuck...........like how it was ALL DAY LONG on the same things......!!!! Later, I notified the medical staff by phone that they need to be vigilant about making sure my mom gets every pill when they are dispensing them. Of course, by the time I notified them the staff had changed to a whole shift of people....who may or may not give the message to the appropriate person.....................................................
 |
| I also sent this email to her Doctor to let him know about the pill situation...his response does not seem to support the possibility of one missed dose accounting for her "bad day"... |
I also think my mom became disoriented in her building and that is why she kept repeating her apartment number. I think she came and left Don's room a few times in the process of trying to get back to her own apartment. I think the reason my mom sometimes does not get to exercise class is because the staff cannot always find her right away either.
My energy for doing errands on the way home................well that energy was long drained out of me! Somehow, after a few short hours with my mom, I just wanted to go home and stare at the walls for a minute. So, I did...after I took Megan to get a Slurpee because she has a sore throat...time to be a mom to my other three kids!
And that is a few hours in the life and this week's edition of
Monday Memories With My Mom.............
(Anyone still with me? Anyone? Anyone?)
Monday Memories With My Mom.............
(Anyone still with me? Anyone? Anyone?)
5 comments:
First, all I have to say is "been there, done that". Somedays you just have to throw out your plans and go with whatever mood they are in.
You do the same thing I do - I try to analyze all the reasons she might be "off" today - what was different, her reactions etc. This will be so helpful to you as things go forward.
I have to ask - Is the seizure med prescribed as an Alzheimers treatment? I have heard of this before in the US but the doctors here think I am crazy. Mom has epilepsy and has taken those drugs for 60 years. Her Alzheimers progression has been very slow and steady which I now think is due in part to the anti seizure meds. Her family doctor thinks I have a great imagination!
Oh Cindy, you are a wonderful daughter and I'm sorry to say, way more patient than I think I would be. You must have been exhausted by the time you got home.
It was great to see you guys last weekend.
Oh goodness - it sounds like a rough day for sure. I'm hoping the pill incident is and isolated case - I'm glad you did bring it to their attention though. I realize they have 100's of people living there, but honestly that's what you are paying them to do.
Hope all her tests came back clear!
There's a sign with your name on it and under your name is the word "hero"...You are wonderful and such a good care giver for your Mom. I can't imagine how difficult it is for you and you still get all the things done with your family. Hope the rest of your week is good.
And I happened to call you in the middle of all that! You're Mom is right, you are her BFF . . .
Post a Comment