So, if you missed my update post from last week, I received a call from one of the aides who basically said that my mom was not cooperating with getting dressed or going to lunch. She called around noon. She also said she used my name and even pretended to telephone me to try to get my mom to cooperate. I thanked her for trying and asked that she at least make sure my mom was brought her meals, lunch in this case. I also told them to try again in awhile. I said I would try to visit so I could redirect her appropriately. I should note that this particular aide is the only one who I know for a fact my mom does not like. My mom has a rather funny nickname for her and has mentioned on several occasions her annoyance with this particular girl.
After thinking about it for a bit and checking the calendar, I realized this was going to have to be the night that I do another sleepover at my mom's place and see what is going on.
Over the 20 hours I was with my mom, I learned a lot. Some new, some not so new. I will try not to ramble too much or get off track, but there is a lot to say...
When I arrived at 5 pm my mom was on the couch. I was immediately alarmed by her appearance. It was obvious to me that she had sat there on the couch for at least 6 hours -- if not all day! I was extremely distraught and immediately asked her to get up so I could properly get her taken care of. Although I give lots of details on this blog, I do draw the line sometimes. This is one of those times. My emotions were running high -- upset with the staff, frustrated with my mom and her inability to complete her ADLs (activities of daily living), but I needed to take care of her.
By the time I got her ready for her day, it was 5:30 pm. However, I decided I wanted her to go to the dining room for dinner as I was quite sure she had not been out all day. I wanted to see if the staff would come and how she would respond to them. I also talked firmly to my mom about accepting the help that is being offered to her. Explaining as best I could using my "mom psychology" why it is so important. She often says things like "I'm not stupid" or "I can do that". Accepting help has always been difficult for my mom. She was independent for so long and on some level she knows she's not 90 years old. However, the fact is that she does need to be prompted, reminded and most of the time helped!
I threw in a load of laundry down the hall and at 5:50 pm (right on schedule) an aide (not the one that called me) from the Med Team arrived to escort my mom to the dining room. I tried to "stay out of" the exchange and see if my mom would cooperate on her own. She was confused, but went with the aide fairly willingly and this aide approached her appropriately. To add to the confusion, apparently one of the elevators in the building was out of service for several days waiting for a part. My mom repeatedly asked if the elevator was working. On this day, it was not. There were notices posted around the building about it. I believe this made my mom very uneasy. The aide indicated it was unsettling to many of the residents. However, the elevator closest to my mom's apartment was working.
I watched my mom eat and it appeared she was a member of the clean plate club that night. (Which leads me to wonder if she had eaten at all that day????) I was also cleaning up and doing laundry while my mom was eating. I also settled my stuff into the extra bedroom at my mom's apartment. My mom never questioned why I had my stuff and we never talked about me staying over. After dinner, my mom made her way back to the apartment herself. Shortly thereafter, the aide came to confirm she was safely back in her apartment and she indicated she would be "back later to get her ready for bed". I again took the opportunity to explain to my mom that when the aide comes back she needs to cooperate and let her help get ready for bed. That is the girl's job and that's what she needs to do if she likes living where she is, etc..... (more mom psychology).
Around 7:30 pm I ran into Tina in the hallway. She was passing out the medication and had been to my mom's apartment while I was in the laundry room. I asked her if my mom was cooperating with her meds and she said, "Oh yeah, your mom is always fine with her medication - she's all set". I said, "Oh good, I just wanted to make sure she is cooperating." So, I walk a few more steps back into my mom's apartment. My mom was still holding her little paper pill cup and -- inside the cup were her pills!!! Well, if you know about these things you know that the aide is supposed to MAKE SURE my mom actually takes ALL of the pills in her presence before she leaves!! Ugh!! So, I asked my mom to take the pills, which she did right then. However, another red flag for me!! For those following along, Tina is also the person I talked about here after my last sleepover adventure in June. I did not say anything to anyone at the time, because there is no supervisor on staff at that time. In fact, I think she was the "lead" that night.
The other aide returned around 9 pm to help my mom get ready for bed. My mom, although repetitive in her questioning, cooperated and went to her bedroom and got ready for bed. My mom also then kept asking if she could go back and "watch Channel 4". However, not long after she came back to watch Channel 4, this dozing off thing started happening. By then, I was bored and getting tired so I just decided to sneak off to my little bedroom and try to wait and see what was going to happen next... Finally, I decided around 9:30 pm to try to plant the seed and get my mom to go sleep in her bed. I turned the TV off and directed her to her room where she kind of sort of laid in bed. Sadly, the idea of actually going to bed did not seem at all obvious to my mom. After awhile, I snuck in and turned off the light. When I peeked in, she had dozed off.
I was startled awake around 12:30am when I heard someone in the apartment. I quickly realized it was one of the aides and apparently my mom was in the bathroom. She talked to her and kind of asked her if she was ok or needed help and then she left. The aide had no idea I was listening in the other room -- and remember I'm trying to be a fly/spy on the wall. I waited and waited for my mom to go back to bed on her own...she did not. Almost an hour went by and I finally had to go in the bathroom and strongly suggest to my mom that she should go back to bed. Obviously, I was also afraid of scaring my mom since I had no idea if she knew I was still there. After the usual questions, she did go back to bed. This time, I was able to get her all the way into the bed and tucked in...
By then it was probably close to 2 am. Once I confirmed she was sleeping, I eventually fell back asleep.
At 7:45 am I heard an aide come in and talk to my mom about getting up and dressed and going to breakfast. She was very pleasant and seemed to know how to work with my mom. I even heard her mention that Don would probably be at breakfast. My mom seemed to indicate she does not really see him and then the aide said something to the affect that "Don has Alzheimer's and doesn't seem to want to be bothered with anyone lately". Hmmmmmmm.......the things you learn. Within about 20 minutes or less they were on their way to breakfast. This was my cue to get a quick shower and continue my work...as spy, daughter, caregiver, patient advocate.
Once I regrouped I headed to the lobby to grab a much needed morning cup of coffee. As luck would have it, the Med Team supervisor AND the aide who called me the day before about my mom not cooperating came into the hospitality room, too. The supervisor first greeted me, and I told her that I had spent the night in response to the call I received about my mom not cooperating. I told her the condition I found my mom in when I arrived. When the other aide arrived, I explained that getting a call at noon about my mom not cooperating and arriving at 5 to find my mom completely not taken care of was NOT what I was expecting. The supervisor agreed that it was unacceptable. I then decided to show her the pictures on my phone of my mom when I arrived. I did not get angry, but was firm in what I said. I told them both that the way they approach my mom is key and that if she would not cooperate with the first aide, I certainly would have expected some other(s) to try by 5 pm and not leave her there on the couch all day... The aide (as they always do) said she cannot "force" my mom to do anything and they do not want her to get "combative". I get that. My mom is not to that point. Unless her buttons are continually pushed inappropriately. After the aide left, I explained to the supervisor that it may be just as simple as not having that particular aide care for my mom. It's obvious my mom, for whatever reason, does not like her. I am quite sure that consequently, she does not care for my mom either. I then told the supervisor about the medication not being appropriately given the night before. She agreed that was also unacceptable. I did also compliment the aide who came that morning on how she got my mom dressed and ready for breakfast. The supervisor asked that I send the photos of my mom when I arrived the day before to her cell phone. I was surprised she wanted them, but was happy to send them to her.
I then went to the dining room to see how my mom was doing. She appeared to be done with her breakfast and then "this guy" arrived! It's been awhile, as far as I know, since my mom has "hung out" in "the Don's" apartment. I get the impression that lately they are not spending much, if any, time together. Perhaps only at breakfast if at all. While I was there, neither my mom nor "the Don" were particularly talkative to each other. I left my mom there wondering when her "escort" would get her and return her to the apartment.
Since I was on a roll (ha!), on the walk back to my mom's I stopped in at the physical therapy room and asked the therapist how my mom had done on her recent round of physical therapy. She actually thought she was doing pretty well. I then told her that, unfortunately, my mom fell flat on her face the week after her physical therapy was over. I also questioned her about the possibility of my mom getting those little support rails for her toilet. I told her that I really thought she could use them even though several months ago the occupational therapist didn't think she needed them. She told me she would check their supply closet to see if anyone had donated any. Otherwise, I would try to get them prescribed by my mom's doctor.
It wasn't even 9:30 am and I was feeling like I was "kicking butt and taking names" (not my usual style, although my kids would probably disagree!) I went back to my mom's apartment and was dreading spending a long morning waiting for "things to happen". I decided if my mom seemed okay I was going to try to color her hair, which was long overdue. Shortly after, my mom wandered back to the apartment on her own. A bit after that, the aide came to confirm that my mom had made it back safely. It appears that the return escorts are not happening. I'm not sure how long my mom is supposed to sit and wait after she is done eating, but for someone who has virtually no real sense of time it seems only natural that she would eventually get up and start walking back. I don't have all the answers, but clearly "the system" is not really working in lots of areas.
After my mom settled in and we watched a bit of morning tv, I told her I wanted to color her hair and she was fine with that. I've had the color in her apartment for awhile, meaning to do it millions of times. I secretly wished I had an assistant like last time when Kristin helped me.
Covering that gray does wonders and anyone who doesn't think that a little hair color and some simple foundation and filling in her eyebrows doesn't make much of a difference. Well, I beg to differ! Below is my mom the night before and then "after" on the right with the hair color and two minutes of makeup application! I actually think we got to not just 10, but perhaps 20 years younger!!
I checked back a couple of days later and brought my mom quite a few supplies that I noticed she needed while I was there. I also took the suggestion of my friend, Arlene at Momma n Me and decided to put some snack bags together since I'm not sure how well my mom is eating lately. I'm a little skeptical that she may devour them all took quickly, but I thought I would give it a try since it's been awhile since we kept any food in her apartment. I also discovered that the physical therapist had, in fact, delivered the support rails we discussed for my mom's toilet. (I thought she forgot about me, so I was happy to see someone being proactive!) I also replaced the tennis balls on the legs of my mom's walker with these new "skis" in hopes of making her walker use literally "smoother".
Today I will be typing up a new plan of care, going through my notes and carefully outlining the items I would like to highlight and discuss with the staff. As always, I welcome your advice, tips and support!. I hope and pray it all goes smoothly and that I'm able to leave my emotions out of it and focus solely on getting the staff to understand my mom and to give the care that's best for her!!!
After thinking about it for a bit and checking the calendar, I realized this was going to have to be the night that I do another sleepover at my mom's place and see what is going on.
Over the 20 hours I was with my mom, I learned a lot. Some new, some not so new. I will try not to ramble too much or get off track, but there is a lot to say...
When I arrived at 5 pm my mom was on the couch. I was immediately alarmed by her appearance. It was obvious to me that she had sat there on the couch for at least 6 hours -- if not all day! I was extremely distraught and immediately asked her to get up so I could properly get her taken care of. Although I give lots of details on this blog, I do draw the line sometimes. This is one of those times. My emotions were running high -- upset with the staff, frustrated with my mom and her inability to complete her ADLs (activities of daily living), but I needed to take care of her.
By the time I got her ready for her day, it was 5:30 pm. However, I decided I wanted her to go to the dining room for dinner as I was quite sure she had not been out all day. I wanted to see if the staff would come and how she would respond to them. I also talked firmly to my mom about accepting the help that is being offered to her. Explaining as best I could using my "mom psychology" why it is so important. She often says things like "I'm not stupid" or "I can do that". Accepting help has always been difficult for my mom. She was independent for so long and on some level she knows she's not 90 years old. However, the fact is that she does need to be prompted, reminded and most of the time helped!
I threw in a load of laundry down the hall and at 5:50 pm (right on schedule) an aide (not the one that called me) from the Med Team arrived to escort my mom to the dining room. I tried to "stay out of" the exchange and see if my mom would cooperate on her own. She was confused, but went with the aide fairly willingly and this aide approached her appropriately. To add to the confusion, apparently one of the elevators in the building was out of service for several days waiting for a part. My mom repeatedly asked if the elevator was working. On this day, it was not. There were notices posted around the building about it. I believe this made my mom very uneasy. The aide indicated it was unsettling to many of the residents. However, the elevator closest to my mom's apartment was working.
I watched my mom eat and it appeared she was a member of the clean plate club that night. (Which leads me to wonder if she had eaten at all that day????) I was also cleaning up and doing laundry while my mom was eating. I also settled my stuff into the extra bedroom at my mom's apartment. My mom never questioned why I had my stuff and we never talked about me staying over. After dinner, my mom made her way back to the apartment herself. Shortly thereafter, the aide came to confirm she was safely back in her apartment and she indicated she would be "back later to get her ready for bed". I again took the opportunity to explain to my mom that when the aide comes back she needs to cooperate and let her help get ready for bed. That is the girl's job and that's what she needs to do if she likes living where she is, etc..... (more mom psychology).
Around 7:30 pm I ran into Tina in the hallway. She was passing out the medication and had been to my mom's apartment while I was in the laundry room. I asked her if my mom was cooperating with her meds and she said, "Oh yeah, your mom is always fine with her medication - she's all set". I said, "Oh good, I just wanted to make sure she is cooperating." So, I walk a few more steps back into my mom's apartment. My mom was still holding her little paper pill cup and -- inside the cup were her pills!!! Well, if you know about these things you know that the aide is supposed to MAKE SURE my mom actually takes ALL of the pills in her presence before she leaves!! Ugh!! So, I asked my mom to take the pills, which she did right then. However, another red flag for me!! For those following along, Tina is also the person I talked about here after my last sleepover adventure in June. I did not say anything to anyone at the time, because there is no supervisor on staff at that time. In fact, I think she was the "lead" that night.
The other aide returned around 9 pm to help my mom get ready for bed. My mom, although repetitive in her questioning, cooperated and went to her bedroom and got ready for bed. My mom also then kept asking if she could go back and "watch Channel 4". However, not long after she came back to watch Channel 4, this dozing off thing started happening. By then, I was bored and getting tired so I just decided to sneak off to my little bedroom and try to wait and see what was going to happen next... Finally, I decided around 9:30 pm to try to plant the seed and get my mom to go sleep in her bed. I turned the TV off and directed her to her room where she kind of sort of laid in bed. Sadly, the idea of actually going to bed did not seem at all obvious to my mom. After awhile, I snuck in and turned off the light. When I peeked in, she had dozed off.
I was startled awake around 12:30am when I heard someone in the apartment. I quickly realized it was one of the aides and apparently my mom was in the bathroom. She talked to her and kind of asked her if she was ok or needed help and then she left. The aide had no idea I was listening in the other room -- and remember I'm trying to be a fly/spy on the wall. I waited and waited for my mom to go back to bed on her own...she did not. Almost an hour went by and I finally had to go in the bathroom and strongly suggest to my mom that she should go back to bed. Obviously, I was also afraid of scaring my mom since I had no idea if she knew I was still there. After the usual questions, she did go back to bed. This time, I was able to get her all the way into the bed and tucked in...
At 7:45 am I heard an aide come in and talk to my mom about getting up and dressed and going to breakfast. She was very pleasant and seemed to know how to work with my mom. I even heard her mention that Don would probably be at breakfast. My mom seemed to indicate she does not really see him and then the aide said something to the affect that "Don has Alzheimer's and doesn't seem to want to be bothered with anyone lately". Hmmmmmmm.......the things you learn. Within about 20 minutes or less they were on their way to breakfast. This was my cue to get a quick shower and continue my work...as spy, daughter, caregiver, patient advocate.
Once I regrouped I headed to the lobby to grab a much needed morning cup of coffee. As luck would have it, the Med Team supervisor AND the aide who called me the day before about my mom not cooperating came into the hospitality room, too. The supervisor first greeted me, and I told her that I had spent the night in response to the call I received about my mom not cooperating. I told her the condition I found my mom in when I arrived. When the other aide arrived, I explained that getting a call at noon about my mom not cooperating and arriving at 5 to find my mom completely not taken care of was NOT what I was expecting. The supervisor agreed that it was unacceptable. I then decided to show her the pictures on my phone of my mom when I arrived. I did not get angry, but was firm in what I said. I told them both that the way they approach my mom is key and that if she would not cooperate with the first aide, I certainly would have expected some other(s) to try by 5 pm and not leave her there on the couch all day... The aide (as they always do) said she cannot "force" my mom to do anything and they do not want her to get "combative". I get that. My mom is not to that point. Unless her buttons are continually pushed inappropriately. After the aide left, I explained to the supervisor that it may be just as simple as not having that particular aide care for my mom. It's obvious my mom, for whatever reason, does not like her. I am quite sure that consequently, she does not care for my mom either. I then told the supervisor about the medication not being appropriately given the night before. She agreed that was also unacceptable. I did also compliment the aide who came that morning on how she got my mom dressed and ready for breakfast. The supervisor asked that I send the photos of my mom when I arrived the day before to her cell phone. I was surprised she wanted them, but was happy to send them to her.
I then went to the dining room to see how my mom was doing. She appeared to be done with her breakfast and then "this guy" arrived! It's been awhile, as far as I know, since my mom has "hung out" in "the Don's" apartment. I get the impression that lately they are not spending much, if any, time together. Perhaps only at breakfast if at all. While I was there, neither my mom nor "the Don" were particularly talkative to each other. I left my mom there wondering when her "escort" would get her and return her to the apartment.
Since I was on a roll (ha!), on the walk back to my mom's I stopped in at the physical therapy room and asked the therapist how my mom had done on her recent round of physical therapy. She actually thought she was doing pretty well. I then told her that, unfortunately, my mom fell flat on her face the week after her physical therapy was over. I also questioned her about the possibility of my mom getting those little support rails for her toilet. I told her that I really thought she could use them even though several months ago the occupational therapist didn't think she needed them. She told me she would check their supply closet to see if anyone had donated any. Otherwise, I would try to get them prescribed by my mom's doctor.
It wasn't even 9:30 am and I was feeling like I was "kicking butt and taking names" (not my usual style, although my kids would probably disagree!) I went back to my mom's apartment and was dreading spending a long morning waiting for "things to happen". I decided if my mom seemed okay I was going to try to color her hair, which was long overdue. Shortly after, my mom wandered back to the apartment on her own. A bit after that, the aide came to confirm that my mom had made it back safely. It appears that the return escorts are not happening. I'm not sure how long my mom is supposed to sit and wait after she is done eating, but for someone who has virtually no real sense of time it seems only natural that she would eventually get up and start walking back. I don't have all the answers, but clearly "the system" is not really working in lots of areas.
After my mom settled in and we watched a bit of morning tv, I told her I wanted to color her hair and she was fine with that. I've had the color in her apartment for awhile, meaning to do it millions of times. I secretly wished I had an assistant like last time when Kristin helped me.
Covering that gray does wonders and anyone who doesn't think that a little hair color and some simple foundation and filling in her eyebrows doesn't make much of a difference. Well, I beg to differ! Below is my mom the night before and then "after" on the right with the hair color and two minutes of makeup application! I actually think we got to not just 10, but perhaps 20 years younger!!
I watched some tv, tidied up and took some more notes on my phone about my adventures. I then decided to check and see if my new Area Agency on Aging case manager was on site so I could introduce myself in person. Her temporary office is in the Ceramics Room at my mom's senior facility. You may recall, she is newly located on site to work specifically with people like me and my mom. I found her, introduced myself, and gave her a quick update of my sleepover and the shortcomings I observed. She asked if I thought a meeting with the American House staff, the Med Team supervisor and herself might be helpful to get this figured out. I said I would love such a meeting. I told her my availability and she called later that day to indicate I would be meeting with the Executive Director of the facility, her assistant, the Med Team supervisor and herself tomorrow, Tuesday morning at 10:30 am.
Honestly, I'm a bit nervous. I quickly realized that it's me...and then four of "them". Although my Area Agency rep and the other staff should be on my side, the truth is I barely know this new rep and the Executive Director and her assistant are also new to the scene. Thus the other problem, tons of turnover in these key positions. This is my third Area Agency case manager since June as my previous rep went on maternity leave and then did not return. The Executive Director who was instrumental in getting my mom into this facility two years ago left a couple of months ago (I am not sure why). This Med Team supervisor has only been on site I'm guessing 6-9 months. Ugh!!
I have again realized how truly alone in this I am -- or at least I feel pretty alone. The meeting just got confirmed and I'm quite sure my brother has to work. Of course, my husband has to work. There is literally nobody else who understands all of the ins and outs of my mom's care and her needs. Just me. In fact, recently when I have discussed these various things with my brother and husband on separate occasions, one of their first reactions is "do you think they are going to say that they can't care for mom anymore"?? Not the encouragement I was hoping for... Honestly, no I do not think this is the time for that. However, if they do not step up and follow the care plan outlined we will be forced to find another solution before I believe it would be necessary. Needless to say, my brother and husband's questioning is not making this any more fun for me. I could definitely use some moral support and that's where you guys come in!!!! That's why I am grateful to have found here on this little blog support from other caregivers and just some nice compassionate people. This blog...a place I never would have expected to find it.
Now back to my adventure, the aide returned around 11:15 am for a toileting check. They are supposed to kind of remind my mom or ask her if she needs any toileting assistance. On this day, I discussed some issues with the aide and she did a great job helping my mom. My mom is not a big fan of these "checks" and you can tell she finds it indignant and humiliating. I feel for her, however, I reminded her they are just there to help and she should be grateful that they are doing their job and that she should cooperate "if she still wants to live there".
Now back to my adventure, the aide returned around 11:15 am for a toileting check. They are supposed to kind of remind my mom or ask her if she needs any toileting assistance. On this day, I discussed some issues with the aide and she did a great job helping my mom. My mom is not a big fan of these "checks" and you can tell she finds it indignant and humiliating. I feel for her, however, I reminded her they are just there to help and she should be grateful that they are doing their job and that she should cooperate "if she still wants to live there".
Then, it wasn't long before this started happening again. Around 12:50 pm the aide came and took my mom to lunch. This was my cue to leave. After 20 hours, I had enough information.
I checked back a couple of days later and brought my mom quite a few supplies that I noticed she needed while I was there. I also took the suggestion of my friend, Arlene at Momma n Me and decided to put some snack bags together since I'm not sure how well my mom is eating lately. I'm a little skeptical that she may devour them all took quickly, but I thought I would give it a try since it's been awhile since we kept any food in her apartment. I also discovered that the physical therapist had, in fact, delivered the support rails we discussed for my mom's toilet. (I thought she forgot about me, so I was happy to see someone being proactive!) I also replaced the tennis balls on the legs of my mom's walker with these new "skis" in hopes of making her walker use literally "smoother".
Today I will be typing up a new plan of care, going through my notes and carefully outlining the items I would like to highlight and discuss with the staff. As always, I welcome your advice, tips and support!. I hope and pray it all goes smoothly and that I'm able to leave my emotions out of it and focus solely on getting the staff to understand my mom and to give the care that's best for her!!!
3 comments:
I can't imagine your mom's back and neck aren't hurting from her sleeping postions...especially on the couch. I hope everything goes smoothly for you tomorrow morning and some things are put into action that you're looking for. It must be extra hard for you with all the turnover/staff changes. I wish someone else could go to be of support to you. Your mom would be so proud to know you are advocating and caring for her in such a way.
Good luck tommorow. With all the notes and pics you have the proof to backup your suggestions for better care for your Mom.Don't give up! Your doing a super job and I bet the suggestions and critique will help other residents as well.
I typed a comment yesterday and I must have forgotten to click publish.
I hope that all your efforts will pay off and good luck at the meeting. I hope that it will pay off.
You are doing a great job of being that fly on the wall, it's the only way to find out what is going on and what needs to change.
Take care, Hugs,
JB
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