The Adventures of Caring for a Mom With Alzheimer's Disease
I have been spending A LOT more time with my mom and on behalf of my mom lately. It's been exhausting on many levels and has left me even less time for blogging. However, here is a recap from where we last left off.
On Saturday, May 3rd I received a call in the middle of the afternoon from A.J. who works for the Med Team. She said she saw my mom sleeping in the main lobby. She was concerned because she and another aide could barely get her back to her apartment. I was pretty sure I knew what was going on. There are times when my mom can barely put one foot in front of the other. Then, there are times when she does pretty well. This was one of those barely put one foot in front of the other times. She said she did not show signs of a stroke, but the aide was concerned and asked if I could come by. She put my mom in bed to rest since she was so exhausted.
I went by to see what was going on. I let my mom sleep in bed for awhile and then got her to come and sit with me in the living room later. While my mom was groggy and walking slowly, I soon realized she was not really any worse than she has been lately and she was likely walking a bit better than when A.J. saw her. The real difference was more likely to be that AJ had not worked with my mom for a few weeks and so was surprised at her decline in walking. I updated AJ on the testing my mom is going through for NPH (Normal Pressure Hydrocephalus) as discussed in my last post here.
While I was still nervous, I trusted that AJ would take care of her as I talked with her extensively and she seems very capable and responsible.
Two days later, on Monday (May 5th) I received an afternoon call that my mom had fallen by her bathroom. She had also used her medical alert bracelet. This time I admittedly freaked out a bit and asked them WHY they felt she needed to go to the hospital. They basically said my mom said she hit her head. Lately, my mom always says she hit her head. Don't get me wrong -- I get it!!!! They have to err on the side of caution (and cover their buts). Meanwhile, there was no sign of bleeding or head injury. I asked if the paramedics could call me when they got there. They did and said something about my mom's pupils and that it could be indicative of a head injury. Why you ask was I practically begging them not to take her to the hospital??? Because the very next day was the appointment with the neurology specialist I have been waiting for, and I knew he would be able to evaluate her far better than the ER.
However, off I went to the ER (again)! Luckily, I was there quickly enough to meet with the doctor who did her initial evaluation. I gave him the 3 minute version of my mom's medical history and the impending appointment tomorrow. He was terrific and completely understood that I was on top of it and only interested in keeping her well and getting to that appointment. I could tell when I got there that my mom seemed reasonably fine. After all, this was our fourth trip to the ER since March and her sixth fall in 2014. He said he had to do a head CT scan and that he would give me a copy to take with me to the neurology appointment. This doctor was very compassionate and commended me on the care I was giving to my mom as he "sees so many who do not". About four hours later, we were once again on our way back to my mom's apartment. Although I was supposed to be somewhere with my kids, I was grateful it was not a longer visit. (Night visits to the ER are definitely worse!)
Since it was past dinner time and neither of us had eaten or drank anything all afternoon, I picked us up a pizza on the way home. Although I didn't prepare for it, I had pretty much decided at the ER that the best thing to do would be for me to spend the night at my mom's apartment. This would hopefully ensure no more falls before meeting with the NPH neurology specialist the next day.
AJ was working that night as well so I again brought her up to speed and then gave her and the staff most of our pizza. My mom was tired and wanted to go to bed around 7 pm, however, I was afraid that was a little too early and then she would likely be up at night. AJ came back around 9 pm (after dealing with another emergency in the building) and helped me get her to bed. I was excited because she was quiet for the first 15-20 minutes and I thought she might actually sleep. Well, no that didn't happen. I could hear her fidgeting and before I knew it she was getting up and heading for the bathroom (even though she had just been 20 minutes earlier). To say my anxiety level about her falling was at an all time high at this point was an understatement. However, I escorted her to the bathroom and then back to bed. I basically have to ignore her when she keeps asking "if I'm there" (which is hard to do)...otherwise, neither of us will ever sleep. I set my alarm for every hour to check on her. Staff checked in around 2 am as well. It was a long night, but it appeared my mom slept through it.
Meanwhile, I knew Sheri would be there to help my mom around 8 am. Also, the wheelchair was also due to arrive that morning which was to be great timing for getting my mom to get to the car for her appointment. But wait, I got a call that morning that there was another mix up and that the wheelchair they were told was in the warehouse was not there when they went to pick it up. I again told of my great disappointment, but frankly didn't have the time to dwell on it at that point (you can read about the wheelchair saga in the footnotes of my last post).
After borrowing a t-shirt for pajamas from my mom and then putting my same clothes back on the next morning (attractive!), I joined Sheri and my mom in the dining room for breakfast. My mom seemed pretty good and Sheri did very well with her getting her out of bed and ready for the morning (as she always does).
One interesting thing I noticed at breakfast was that "the Don" was sitting waiting in the wings outside the dining room. Sheri said that was pretty much normal. I can't believe that in spite of everything, they still seem to manage to see each other. Sheri indicated how hard it was to get my mom back to the apartment once they start talking. However, today it was not meant to be. While my mom was finishing her breakfast, I noticed one of the physical therapists came to get "the Don". I sense that he is declining somewhat, but at this stage he does not even have a walker or cane with him and still appears to do better than my mom.
I learn a lot when I sit in the dining room. Lately, I feel fairly comfortable that the staff is very familiar with my mom and her likes, dislikes and needs. I also learned what a "gait belt" is. Because of my mom's many recent falls, Sheri has sometimes been putting a gait belt around my mom's waist. It's a big long cloth belt that can easily be grabbed if my mom were to start to fall.
I was anticipating my mom's appointment. I did not feel as prepared as I normally would have been had I been home the night before to contemplate my questions and gather my paperwork, plus a good night's sleep would have been nice. However, I did have the basics with me and the next obstacle was going to be getting my mom to the car now that I knew the wheelchair didn't make it. Sheri and I ended up using a wheeled walker with a seat to get her to the car. My mom has had the walker for awhile, but was never able to use it because of the coordination it takes to use the hand brakes. Using the walker wasn't pretty, but it definitely beat the alternative and we got her to the car much quicker this way.
I should note that as this appointment came closer, I realized I did not want to make the visit alone, with only my mom. How would I talk privately to the doctor? What if he gave me some very serious medical decisions to contemplate? What if my mom distracted me from asking the questions I really need to ask? What if I couldn't remember something the doctor said -- another set of ears would be good! I had mentioned the appointment to my brother thinking he might had the day off since he works a rotating 4-day work week. Meanwhile, I asked my husband if he could meet me there. Thankfully, he agreed to meet me there in the middle of his work day and then get the kids from their extracurricular stuff.
Once again, hooray for the valet parking and wheelchair assistance at the hospital. I am getting to know the valets -- one of which graduated from the same schools as my kids go to. They are very helpful and my husband met me in the waiting room just in time for the appointment. Next post, we meet the neurologist at the fancy hospital!!!!
I have been spending A LOT more time with my mom and on behalf of my mom lately. It's been exhausting on many levels and has left me even less time for blogging. However, here is a recap from where we last left off.
On Saturday, May 3rd I received a call in the middle of the afternoon from A.J. who works for the Med Team. She said she saw my mom sleeping in the main lobby. She was concerned because she and another aide could barely get her back to her apartment. I was pretty sure I knew what was going on. There are times when my mom can barely put one foot in front of the other. Then, there are times when she does pretty well. This was one of those barely put one foot in front of the other times. She said she did not show signs of a stroke, but the aide was concerned and asked if I could come by. She put my mom in bed to rest since she was so exhausted.
I went by to see what was going on. I let my mom sleep in bed for awhile and then got her to come and sit with me in the living room later. While my mom was groggy and walking slowly, I soon realized she was not really any worse than she has been lately and she was likely walking a bit better than when A.J. saw her. The real difference was more likely to be that AJ had not worked with my mom for a few weeks and so was surprised at her decline in walking. I updated AJ on the testing my mom is going through for NPH (Normal Pressure Hydrocephalus) as discussed in my last post here.
While I was still nervous, I trusted that AJ would take care of her as I talked with her extensively and she seems very capable and responsible.
Two days later, on Monday (May 5th) I received an afternoon call that my mom had fallen by her bathroom. She had also used her medical alert bracelet. This time I admittedly freaked out a bit and asked them WHY they felt she needed to go to the hospital. They basically said my mom said she hit her head. Lately, my mom always says she hit her head. Don't get me wrong -- I get it!!!! They have to err on the side of caution (and cover their buts). Meanwhile, there was no sign of bleeding or head injury. I asked if the paramedics could call me when they got there. They did and said something about my mom's pupils and that it could be indicative of a head injury. Why you ask was I practically begging them not to take her to the hospital??? Because the very next day was the appointment with the neurology specialist I have been waiting for, and I knew he would be able to evaluate her far better than the ER.
However, off I went to the ER (again)! Luckily, I was there quickly enough to meet with the doctor who did her initial evaluation. I gave him the 3 minute version of my mom's medical history and the impending appointment tomorrow. He was terrific and completely understood that I was on top of it and only interested in keeping her well and getting to that appointment. I could tell when I got there that my mom seemed reasonably fine. After all, this was our fourth trip to the ER since March and her sixth fall in 2014. He said he had to do a head CT scan and that he would give me a copy to take with me to the neurology appointment. This doctor was very compassionate and commended me on the care I was giving to my mom as he "sees so many who do not". About four hours later, we were once again on our way back to my mom's apartment. Although I was supposed to be somewhere with my kids, I was grateful it was not a longer visit. (Night visits to the ER are definitely worse!)
 |
| Leaving the Hospital... |
AJ was working that night as well so I again brought her up to speed and then gave her and the staff most of our pizza. My mom was tired and wanted to go to bed around 7 pm, however, I was afraid that was a little too early and then she would likely be up at night. AJ came back around 9 pm (after dealing with another emergency in the building) and helped me get her to bed. I was excited because she was quiet for the first 15-20 minutes and I thought she might actually sleep. Well, no that didn't happen. I could hear her fidgeting and before I knew it she was getting up and heading for the bathroom (even though she had just been 20 minutes earlier). To say my anxiety level about her falling was at an all time high at this point was an understatement. However, I escorted her to the bathroom and then back to bed. I basically have to ignore her when she keeps asking "if I'm there" (which is hard to do)...otherwise, neither of us will ever sleep. I set my alarm for every hour to check on her. Staff checked in around 2 am as well. It was a long night, but it appeared my mom slept through it.
Meanwhile, I knew Sheri would be there to help my mom around 8 am. Also, the wheelchair was also due to arrive that morning which was to be great timing for getting my mom to get to the car for her appointment. But wait, I got a call that morning that there was another mix up and that the wheelchair they were told was in the warehouse was not there when they went to pick it up. I again told of my great disappointment, but frankly didn't have the time to dwell on it at that point (you can read about the wheelchair saga in the footnotes of my last post).
After borrowing a t-shirt for pajamas from my mom and then putting my same clothes back on the next morning (attractive!), I joined Sheri and my mom in the dining room for breakfast. My mom seemed pretty good and Sheri did very well with her getting her out of bed and ready for the morning (as she always does).
One interesting thing I noticed at breakfast was that "the Don" was sitting waiting in the wings outside the dining room. Sheri said that was pretty much normal. I can't believe that in spite of everything, they still seem to manage to see each other. Sheri indicated how hard it was to get my mom back to the apartment once they start talking. However, today it was not meant to be. While my mom was finishing her breakfast, I noticed one of the physical therapists came to get "the Don". I sense that he is declining somewhat, but at this stage he does not even have a walker or cane with him and still appears to do better than my mom.
 |
| Bottom Left: The Don./Bottom Right: Gait Belt |
I was anticipating my mom's appointment. I did not feel as prepared as I normally would have been had I been home the night before to contemplate my questions and gather my paperwork, plus a good night's sleep would have been nice. However, I did have the basics with me and the next obstacle was going to be getting my mom to the car now that I knew the wheelchair didn't make it. Sheri and I ended up using a wheeled walker with a seat to get her to the car. My mom has had the walker for awhile, but was never able to use it because of the coordination it takes to use the hand brakes. Using the walker wasn't pretty, but it definitely beat the alternative and we got her to the car much quicker this way.
I should note that as this appointment came closer, I realized I did not want to make the visit alone, with only my mom. How would I talk privately to the doctor? What if he gave me some very serious medical decisions to contemplate? What if my mom distracted me from asking the questions I really need to ask? What if I couldn't remember something the doctor said -- another set of ears would be good! I had mentioned the appointment to my brother thinking he might had the day off since he works a rotating 4-day work week. Meanwhile, I asked my husband if he could meet me there. Thankfully, he agreed to meet me there in the middle of his work day and then get the kids from their extracurricular stuff.
Once again, hooray for the valet parking and wheelchair assistance at the hospital. I am getting to know the valets -- one of which graduated from the same schools as my kids go to. They are very helpful and my husband met me in the waiting room just in time for the appointment. Next post, we meet the neurologist at the fancy hospital!!!!
2 comments:
Cindy, I don't blame you for not having time to blog lately. You really have your hands full and with all this stress, you are doing fantastic. You are so organized and have every thing under control.
It's good that you write a blog to keep track of what's happening with your mom and that way you have a record. I hope that you can get a bit of a break because all this must be so exhausting for you emotionally and physically.
You are doing a hell of a good job and I know it's not easy.
Hugs,
JB
Ditto to what Julia said...You are a wonderful daughter (and friend)!
Looking forward to a GNO soon! XO
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