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...
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...
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...
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!
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...
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| 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...
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| I Brought a Peony From My Yard |
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| How Do We Keep Her Safe?? |
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!
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| When I Arrived at the ER both Mom and Muffin Seemed Fine |
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| Her Legs, However, Have Definitely Taken a Beating |
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| And So We Wait...and I Wonder... |
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| At Least We "Know" Rachel, the Nurse |
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| 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!!
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5 comments:
Oh Cindy, those damn UTI's are so terrible. Mom had so many and the worst part is that the infection gets so bad without anyone knowing because the patient can't tell us what is wrong early enough.
I feel so bad for you both and I wish I had a magic fix to tell you. Remember, we just do the best we can! And you are doing all you can. I'm happy your Mom's friend got to spend a nice day with her.
Thanks for posting an update. I think of you and your mom often.
Just when I thought that things were going rather well, it's back to more frustrations.
UTI are indeed terrible and can damage the kidneys permanently if not caught on time.
I wish that you could enjoy your summer without any worries about your mom. It's fortunate that your mom's friend came to spend some time with her to let you enjoy your day with family.
Hugs,
JB
Holy cow, her poor little legs! I'm glad those falls have not created a fracture. However, how hard for you to run to the ER so often. I know I work in a hospital, but I sure hate being there not getting paid! I'm glad she had a nice day with her friend and Happy birthday to you! Hope your day was as nice.
I miss your updates.
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