The Adventures of Caring for a Mom With Alzheimer's Disease
Oh gosh, where do I begin? Well, Thanks! Thank you to all for your nice comments on my brief update from last week. Things were looking particularly hopeless and bad, and I was pretty overwhelmed with that and all that was going on in general. Things are seeming a tad bit better as I write this, but only time will tell. All in all, my mom is ok but has had some set backs and I have become even more aware of just how very inconsistent and often non-existent the services we count on are being provided to her by the medical staff.
I will probably break this post down into two parts for my sake (and yours!). Remember, I am doing this for my own record of events and to raise awareness of why caregiving for someone with Alzheimer's Disease has so many aspects that make it unlike any other kind of caregiving (oh, and your empathy and support has been a nice bonus, too!!). Meanwhile, I am very aware that I am no longer a 24/7 hands on caregiver. Thus, the reason I need to be able to count on others.
As we last left off, I was to take my mom on a follow up dental appointment. Thankfully, it went ok from a dental standpoint, although my mom was extremely agitated and "inquisitive" during the entire process. Afterwards, I knew there was one thing that was long overdue. We needed to get rid of -- once and for all -- that humongous bag that was on my mom's walker. At some point, some well-meaning staff person provided her a huge bag. For awhile, she was doing okay with it and not hoarding everything but the kitchen sink. That seems long ago. When I moved her into this apartment, she had a small red basket attached to her walker as I knew she would need a place for keys and mail to and from the dining room area. So, I went back to the dollar store and bought another small basket. I think the final straw for doing this was when the ceramic plate with toast on it and other icky food items were recently found in her "walker bag". It was amazing...in a bad way.
As I eluded to in my May 27th post, I had filled out in great detail a survey from the Med Team people. I had also received a call from their "area supervisor" the Friday before Memorial Day (May 24th). I was hopeful as the supervisor seemed concerned and that he would be overseeing the staff and rectifying the situation. Specifically, lack of proper escorts, AM care, PM care, lack of communication on falls and medication slip ups to name a few. Escorts to social events and exercise class are also supposed to be happening.
On Friday, May 31st the supervisor telephoned to tell me my mom left the exercise class after a few minutes and when the escort took her back again my mom said she wanted to go to the movie. (There is no movie in the morning.) I felt sad and frustrated that it appeared my mom did not cooperate with the escort, but also strongly feel that it is because THEY have let my mom's scheduled routine slip and that she is not in the groove she was several months ago. Also, I now know what may have actually happened. Stay tuned for that.
On June 4th I was anxious to arrive early to pick my mom up for her neurologist appointment. I was anxious because I thought that certainly after letting my concerns be known and speaking with the supervisor that I would be excited to see my mom once again getting the help she needs. Not so fast... I arrived at 9:45 am in hopes of witnessing the staff picking up my mom for 10 am chair exercise class. Instead, she was in her bathroom in need of assistance. I helped her and re-dressed her. She apologized and thanked me. Then, when still nobody came to get her by 10:15 am, we had to leave for her doctor appointment. As we were leaving, I looked downstairs and confirmed that the exercise class was, indeed, taking place.
My disappointment was setting in. Then there was the over 30 minutes car ride to the doctor. What doctor? What road are we on? What road is he on? Can I bring Muffin (he was in her lap), Does he want to see if I'm crazy? Over and over for the whole ride.
I was determined to try to pinpoint the neurologist on why my mom seems extra "off" lately. I asked if it could be seizures or mini strokes. He said it was not. It was her dementia worsening. I asked if there were ways to distract her that I was not aware of or ways to cope. He gave me nothing and said there was nothing else I could do. He did say we could do an EEG to confirm there were no seizures, but since she is on medication for seizures he did not expect to find anything. I was willing to give it a try, but they could not fit us in their schedule while we were there. I am debating whether to reschedule this probably unnecessary test. It was not fun. It's kind of a hopeless type appointment. He can't seem to do much, I can't seem to do much, and my mom can't seem to do much. That's Alzheimer's...
The best thing that happened was me getting the ceremonious Icee drink for the car ride back. It kept my mom happy, busy, and quiet for most of the ride home. It's ironic to know there will be a day where I wish she could talk again. We returned by 12:30 pm and I left her in her apartment in hopes of her being available for her lunch escort. Lunch begins at 1:00 pm. I called her at 1:20 pm. She was in her apartment. Nobody came and got her for lunch!!!!!!!!!!! I was furious! I called my off site "area supervisor" guy. I told him I was hoping to be impressed and was not. I told him I was frustrated. He said he was in the car on his way there and that he would be "writing people up". That's great, meanwhile my mom has not had lunch...
The next day, the supervisor followed up with me by phone. He confirmed that she did not get an exercise escort or lunch escort. He suggested working with my mom on making a monthly schedule of escorts, i.e. movie, exercise class, etc. I suggested he work directly with me instead as my mom is generally not able to make her own decisions. By the way, a plan is already supposed to be in place. Monday-Friday exercise 10 am, Saturday's Music Program, and Sundays on site church. I asked him if she had been escorted TODAY to her meals. He called back and confirmed she had been to breakfast and lunch. Do I trust any of them at this point...no!
That same day, at 10:30 pm, Med Team staff called. My mom had fallen in Don's apartment living room. I was told Don's daughter alerted the Med Team of the fall. During this phone call I asked and learned that neither my mom nor Don had been to dinner. My mom also did not get some of her meds as they could not find her. I learned these things by asking, they did not offer it. They told me she was disoriented by just scraped, not bleeding. When they called, she was back in her apartment with food and ready for bed and watching tv. The only good news...they let me know about the fall.
The next morning, June 6th, I called my mom at 9:30 am. Asked if she went to breakfast. She said no (????). Told her I heard she fell in Don's apartment last night. She said she hasn't seen Don in a long time. (She always says that lately, and I believe if she had not gotten "in trouble" for seeing him, she would not be so secretive.) I asked if she was dressed. She said she "kind of" was. She said she had pants on and her robe. I called again at 10:05 am. She was not at exercise class.
At 11 am...Kim, the behavioral nurse whom I've worked with before called. She heard I am having problems with Med Team staff (which she is a part of) and will work with me the next few weeks to evaluate my mom and she got the on staff doctor to write an order for it.... She will give me an update after she sees her twice. I told her specifically a couple of the problems I was having. I like this nurse as she understood and sided with me with regards to my mom and Don being companions.
By noon that day, I knew what I had to do. Call Don's daughter (whom I hadn't spoken to in months since she abruptly ended a phone call where I told her I did not see a problem or solution for my mom and her dad spending time together...). I thanked her for alerting the staff of my mom's fall. I said I knew that she is not fond of my mom or her spending time with her dad. I got choked up and started to tear up. She sensed that I was upset and kindly explained that she was on the phone with her dad when my mom had fallen and walked him through what to do, including pressing my mom's medical alert bracelet. She also told me it is not that she does not like my mom, just that it makes her job of taking care of her dad more difficult. I explained to her that my mom is not getting the services like she should and asked for her patience and understanding while I try to sort things out. I even mentioned that my mom was missing her two rings in case she ever stumbles upon them. Her dad was also missing some jewelry. She was very nice and I'm glad I called her.
At 8:15 pm that night I received another call from the Med Team staff (Lakeesha). She said my mom had fallen at 4 (and 6 pm). (Thanks for the call 4 hours later...) She was on her living room floor flat on her face... She had not used her walker. My mom said she tripped over her own feet. The 6 pm fall they found her when they got her for dinner. They brought her food to the room instead because of the two falls. Med Team said my mom said she was trying to change the channel on the tv!?? That was three falls within 24 hours...for those keeping track. Staff did not think it was necessary for me to come over. I did.
I arrived by 10pm. There she was in pjs sitting on the couch and I could see her dinner was eaten. She went to bed easily for me once I turned her light on so she could sit in bed and read. My mom is a super light sleeper. I almost forgot that and tried not to move a muscle while I was there. I shimmied my way to the extra bedroom and by 11:30 pm my mom was dozing off and talking in her sleep. Despite being told they would "keep an eye on her", no staff checked on her throughout the night while I was there. I barely slept as I was convinced she was likely to fall if she got out of bed. I never did hear her get out of bed and despite hearing her occasionally talking to "Muffin" in the middle of the night, I managed to get a little sleep...
Oh gosh, where do I begin? Well, Thanks! Thank you to all for your nice comments on my brief update from last week. Things were looking particularly hopeless and bad, and I was pretty overwhelmed with that and all that was going on in general. Things are seeming a tad bit better as I write this, but only time will tell. All in all, my mom is ok but has had some set backs and I have become even more aware of just how very inconsistent and often non-existent the services we count on are being provided to her by the medical staff.
I will probably break this post down into two parts for my sake (and yours!). Remember, I am doing this for my own record of events and to raise awareness of why caregiving for someone with Alzheimer's Disease has so many aspects that make it unlike any other kind of caregiving (oh, and your empathy and support has been a nice bonus, too!!). Meanwhile, I am very aware that I am no longer a 24/7 hands on caregiver. Thus, the reason I need to be able to count on others.
As we last left off, I was to take my mom on a follow up dental appointment. Thankfully, it went ok from a dental standpoint, although my mom was extremely agitated and "inquisitive" during the entire process. Afterwards, I knew there was one thing that was long overdue. We needed to get rid of -- once and for all -- that humongous bag that was on my mom's walker. At some point, some well-meaning staff person provided her a huge bag. For awhile, she was doing okay with it and not hoarding everything but the kitchen sink. That seems long ago. When I moved her into this apartment, she had a small red basket attached to her walker as I knew she would need a place for keys and mail to and from the dining room area. So, I went back to the dollar store and bought another small basket. I think the final straw for doing this was when the ceramic plate with toast on it and other icky food items were recently found in her "walker bag". It was amazing...in a bad way.
 |
| This Cleaning Was Getting OLD!! |
Not surprisingly, she is walking a bit faster now that there is not 50 lbs. of stuff attached to the walker and she has room for her legs inside the walker (oh, and shame on me for not nipping this in the bud sooner)!!
 |
| Muffin and Keys is all she needs... |
As I eluded to in my May 27th post, I had filled out in great detail a survey from the Med Team people. I had also received a call from their "area supervisor" the Friday before Memorial Day (May 24th). I was hopeful as the supervisor seemed concerned and that he would be overseeing the staff and rectifying the situation. Specifically, lack of proper escorts, AM care, PM care, lack of communication on falls and medication slip ups to name a few. Escorts to social events and exercise class are also supposed to be happening.
On Friday, May 31st the supervisor telephoned to tell me my mom left the exercise class after a few minutes and when the escort took her back again my mom said she wanted to go to the movie. (There is no movie in the morning.) I felt sad and frustrated that it appeared my mom did not cooperate with the escort, but also strongly feel that it is because THEY have let my mom's scheduled routine slip and that she is not in the groove she was several months ago. Also, I now know what may have actually happened. Stay tuned for that.
On June 4th I was anxious to arrive early to pick my mom up for her neurologist appointment. I was anxious because I thought that certainly after letting my concerns be known and speaking with the supervisor that I would be excited to see my mom once again getting the help she needs. Not so fast... I arrived at 9:45 am in hopes of witnessing the staff picking up my mom for 10 am chair exercise class. Instead, she was in her bathroom in need of assistance. I helped her and re-dressed her. She apologized and thanked me. Then, when still nobody came to get her by 10:15 am, we had to leave for her doctor appointment. As we were leaving, I looked downstairs and confirmed that the exercise class was, indeed, taking place.
My disappointment was setting in. Then there was the over 30 minutes car ride to the doctor. What doctor? What road are we on? What road is he on? Can I bring Muffin (he was in her lap), Does he want to see if I'm crazy? Over and over for the whole ride.
I was determined to try to pinpoint the neurologist on why my mom seems extra "off" lately. I asked if it could be seizures or mini strokes. He said it was not. It was her dementia worsening. I asked if there were ways to distract her that I was not aware of or ways to cope. He gave me nothing and said there was nothing else I could do. He did say we could do an EEG to confirm there were no seizures, but since she is on medication for seizures he did not expect to find anything. I was willing to give it a try, but they could not fit us in their schedule while we were there. I am debating whether to reschedule this probably unnecessary test. It was not fun. It's kind of a hopeless type appointment. He can't seem to do much, I can't seem to do much, and my mom can't seem to do much. That's Alzheimer's...
The best thing that happened was me getting the ceremonious Icee drink for the car ride back. It kept my mom happy, busy, and quiet for most of the ride home. It's ironic to know there will be a day where I wish she could talk again. We returned by 12:30 pm and I left her in her apartment in hopes of her being available for her lunch escort. Lunch begins at 1:00 pm. I called her at 1:20 pm. She was in her apartment. Nobody came and got her for lunch!!!!!!!!!!! I was furious! I called my off site "area supervisor" guy. I told him I was hoping to be impressed and was not. I told him I was frustrated. He said he was in the car on his way there and that he would be "writing people up". That's great, meanwhile my mom has not had lunch...
 |
| What Doctor? Can I Bring Muffin?... |
 |
| She sits like this all the time...can't be good for her?? I've tried lots of things. (I also sit like that at my house...) |
The next day, the supervisor followed up with me by phone. He confirmed that she did not get an exercise escort or lunch escort. He suggested working with my mom on making a monthly schedule of escorts, i.e. movie, exercise class, etc. I suggested he work directly with me instead as my mom is generally not able to make her own decisions. By the way, a plan is already supposed to be in place. Monday-Friday exercise 10 am, Saturday's Music Program, and Sundays on site church. I asked him if she had been escorted TODAY to her meals. He called back and confirmed she had been to breakfast and lunch. Do I trust any of them at this point...no!
That same day, at 10:30 pm, Med Team staff called. My mom had fallen in Don's apartment living room. I was told Don's daughter alerted the Med Team of the fall. During this phone call I asked and learned that neither my mom nor Don had been to dinner. My mom also did not get some of her meds as they could not find her. I learned these things by asking, they did not offer it. They told me she was disoriented by just scraped, not bleeding. When they called, she was back in her apartment with food and ready for bed and watching tv. The only good news...they let me know about the fall.
The next morning, June 6th, I called my mom at 9:30 am. Asked if she went to breakfast. She said no (????). Told her I heard she fell in Don's apartment last night. She said she hasn't seen Don in a long time. (She always says that lately, and I believe if she had not gotten "in trouble" for seeing him, she would not be so secretive.) I asked if she was dressed. She said she "kind of" was. She said she had pants on and her robe. I called again at 10:05 am. She was not at exercise class.
At 11 am...Kim, the behavioral nurse whom I've worked with before called. She heard I am having problems with Med Team staff (which she is a part of) and will work with me the next few weeks to evaluate my mom and she got the on staff doctor to write an order for it.... She will give me an update after she sees her twice. I told her specifically a couple of the problems I was having. I like this nurse as she understood and sided with me with regards to my mom and Don being companions.
By noon that day, I knew what I had to do. Call Don's daughter (whom I hadn't spoken to in months since she abruptly ended a phone call where I told her I did not see a problem or solution for my mom and her dad spending time together...). I thanked her for alerting the staff of my mom's fall. I said I knew that she is not fond of my mom or her spending time with her dad. I got choked up and started to tear up. She sensed that I was upset and kindly explained that she was on the phone with her dad when my mom had fallen and walked him through what to do, including pressing my mom's medical alert bracelet. She also told me it is not that she does not like my mom, just that it makes her job of taking care of her dad more difficult. I explained to her that my mom is not getting the services like she should and asked for her patience and understanding while I try to sort things out. I even mentioned that my mom was missing her two rings in case she ever stumbles upon them. Her dad was also missing some jewelry. She was very nice and I'm glad I called her.
At 8:15 pm that night I received another call from the Med Team staff (Lakeesha). She said my mom had fallen at 4 (and 6 pm). (Thanks for the call 4 hours later...) She was on her living room floor flat on her face... She had not used her walker. My mom said she tripped over her own feet. The 6 pm fall they found her when they got her for dinner. They brought her food to the room instead because of the two falls. Med Team said my mom said she was trying to change the channel on the tv!?? That was three falls within 24 hours...for those keeping track. Staff did not think it was necessary for me to come over. I did.
I arrived by 10pm. There she was in pjs sitting on the couch and I could see her dinner was eaten. She went to bed easily for me once I turned her light on so she could sit in bed and read. My mom is a super light sleeper. I almost forgot that and tried not to move a muscle while I was there. I shimmied my way to the extra bedroom and by 11:30 pm my mom was dozing off and talking in her sleep. Despite being told they would "keep an eye on her", no staff checked on her throughout the night while I was there. I barely slept as I was convinced she was likely to fall if she got out of bed. I never did hear her get out of bed and despite hearing her occasionally talking to "Muffin" in the middle of the night, I managed to get a little sleep...
There is more... Part Two later today!!!
 |
| Seems ok... What Are You Doing Here? |
5 comments:
Hi Cindy! First off, that new basket on your mom's walker made me smile. It probably won't get too full because things will start falling through the holes! :)
I can feel your frustration...and boy I would be upset too. What's up with the med staff?? It seems to me that if there's a schedule in place they should be following it. What's so difficult about that? Especially for your mom who I would think needs some consistency and routine in her day to help make it less confusing for her. And, if Don is also missing some jewelry...just wondering if this needs to be further reported/investigated?
Hang in there Cindy...
Cindy, I really don't know what to say here that will help. I can feel and share your frustration. I can see the decline, as having experienced it first hand. Soon you will not be able to rely on your Mom to give you answers. You can ask Mom a question and get a No, and 5 seconds later ask the same question and she says yes. And yes, you are right - there will be a time when you will miss the 10,000 questions you get on each car ride. I didn't think I would because they just about drove me crazy at the time but now I am lucky to get one word or a grunt.
Thinking of you, Kim
This is so disappointing and frustrating and scary. I'm sorry you have to go through this and I hope a solution can be found. Today a co-worker was telling me about her 94yr. old Grandma who lives in a very nice assisted living place but they discovered her legs covered in bites..bug bites...from bed bugs! They were everywhere in her room. The staff knew about the problem in the facility but didn't want anyone to know....seriously, stuff like this makes me so mad.
WTF! This is crazy! I don't get what on earth they are doing over there that they can't continue to follow the schedule she's been on for months? And they you bring it up and they tell you it'll happen FOR SURE and it STILL doesn't. I think my head would pop off!
Okay, I need to go read part 2 now!
Cindy,
Document. Document. Document. Everything. You might need it later. I'm so sorry that your Mom's illness is progressing. You are SO right in making phone calls and noise! Nice job simplifying your Mom's walker. You might find other areas that will ease her confusion by simplification as well. One day at a time.... it's all we've got. Thinking of you today... :)a
Post a Comment