This past July and August my mom was in the hospital (actually in 3 hospitals). She had been over-medicated and mis-medicated and was suffering deep dementia-related symptoms. She was agitated, raving, hallucinating, confused, angry, delusional, violent. She was so weak she couldn't stand unassisted and had to be helped with the most basic tasks of living. Her diagnosis was multi-infarct dementia and the doctors assured us that the condition was permanent. She would need life-long confinement and constant care.
I'd like to tell all those doctors that BULLSHIT YOU JERKS, it was the medication after all. Today my mom moved into a brand new assisted living facility. She has a very minor level of care, 3 meals daily, medication oversight and complete freedom of movement. There are a lot of things she can't do, but so many more that she can. She can't live alone again but she doesn't need to be locked away for her own protection or watched constantly.
A tough part of this move was my mom's having to acknowledge that the large part of her independence is gone. She's been her own support system for most of her adult life and to have to depend upon others, to have to ask for help for basics, is foreign to her. She'll never again drive a car, never balance a checkbook (or even write a check), never set her own daily schedule. She won't be planning her own meals, won't be cooking or shopping alone. All her financial decisions are out of her hands.
But the hardest part was having to downsize her possessions. For almost three quarters of a century my mom has been a collector. When I was a little girl she started collecting antiques. She scoured old barns and out-of-way shops and had her own personal antique store owner who would call her first when something good came in. Lovely, heavy dark woods; fancy intricately designed upholstery fabrics; antique pewter mugs; old red glass. Then she started traveling around the world and collecting more things. First there were the fine art objects, then the folk art.
Two years ago she moved from La Jolla to a smaller home up here. She needed to be closer to me, closer to my brother, closer to a support network. She went from about 2000 crowded square feet to about 1500 square feet. She didn't pare down her possessions, didn't sort anything, didn't discard anything. Everything squeeeeezed into the smaller home. But now the space she moved to today only has 750 square feet. Lots of things needed to go.
As the main packer it was my job to talk my mom into sorting her possessions. We started with big furniture, went through books and then sorted objects. We packed what she absolutely wanted. We stuck books to donate to the library in a far corner. I set aside a large table for questionable items. About the only thing that convinced my mom to not take everything was the idea that her choices weren't irrevocable. We covered that table, then surrounded that table, and went through rolls and rolls of bubble wrap. Boxes were marked as "books" or "fragile" or "very fragile" or "the most fragile."
Everything we moved - packed or piled - had a story. "I found that in an old store in the U.P." Or, "Noreen called me when this came in and I rushed to get it. " And, "I bought that in Alaska" "Russia" "China" "Mexico" "Egypt" "China" (she liked it there, went a few times to different places) "Cuba" "Mexico" (went there a lot too; I went with her a few times) "Thailand" "Detroit" "Jupiter" (I made that up to see if you're paying attention) (but she would have gone if there were interesting things to see).
There is memory loss, with some things there's lots of memory loss, but my mom remembers where her beloved belongings are from. She remembers who she was with if she wasn't traveling alone, she remembers how she bargained and often how little she paid. She doesn't remember when she went to many of these places. I thought that putting aside her stuff was remarkably brave and it broke my heart to see her have to go through this.
It only got worse when we got to her clothes. My mom has always lived with plenty of closet space so she has never had to get rid of things. Before arthritis crippled her fingers she made most of her clothes; she was a fabulous seamstress and had a great eye for colors and great touch for fabrics. She made timeless classics and, apparently, kept them all.
She went through her first closet by herself and almost everything was in the keep pile. I took her into the next closet and told her that everything had to fit onto one hanging rod; everything else would go on her bed. When it was all "keep" "keep" "keep" I made the same bargain about the clothes that I had about the other items: nothing is irrevocable. Once the movers took the clothes she definitely wanted, I'd re-hang the rest of them and she'd have plenty of time to change her mind. That got things moving.
I'd ask when she had last worn something. Point out any spots or worn bits or tears. Ask if it fit. Cajoled her. Jollied her. Laughed. Rolled my eyes. Admired dresses while telling her she had no use for them. Asked her if she planned to move back to Detroit to wear some of her warmest clothes. Took things away while she was undecided.
But I knew exactly how hard it was to put aside a couple of articles. One was a gorgeous red lace (backless) party dress that she wore when I was a little girl. Yup, that was in the 1960's! She has kept this dress, moved it about 8 times and probably hasn't worn it for 40+ years. It's still in perfect shape, still stylish. She will never wear it again, I could never wear it (although I'd love to); it will just hang. She finally gave it to me to put on the bed and it looked like she was going to cry. I felt like the meanest meany who every meaned.
We never even touched the folded shirts and sweaters, that will be another job for another time. We didn't go through any of her paperwork, didn't touch the garage (oy. The garage). I met the movers this morning and in the pouring storm they spent a couple of hours loading our carefully packed boxes, the bed, the sofa, the desk, the chairs, the end tables, the lamps, the mirrors, and more more more. When they left the house still looked full.
They brought everything to her new apartment in her new home. The movers carted in the goods and I unpacked some things while my bro and sister-in-law took my mom down to the dining room for her first meal there. I emptied the wardrobes, filled the mini-fridge, set up the bathroom. I placed things in drawers and in the closet and on the shelves. I didn't touch the boxes of "stuff" but made sure my mom had the things she needed for her first night.
When my family came back from lunch, raving about how good the food was, I had a surprise for my mom. I directed her to the closet, stuffed full of her clothes. And there, hanging front and center, was her beloved red dress.
I'm such a pushover.
Showing posts with label Dementia. Show all posts
Showing posts with label Dementia. Show all posts
Tuesday, January 19, 2010
Thursday, November 5, 2009
Moving and moving on
This summer my family was told by several doctors, in many specialties, that my mom would never recover from her hospital-caused mistaken over-drugging that led to psychosis and dementia. They said she might improve but she'd never be back to how she started, the day she was taken to the emergency room. They expected little cognitive and only partial physical rehabilitation. I'm quite happy to say they were full of shit.
These days my mom is living in a dementia oriented assisted living facility. When she was initially discharged from hospital #3 and delivered to her room she was confused, weak, slightly agitated. She spent most of her time the next couple of weeks in her own room; she had had enough of the 24 hour sitters watching her every move. When she did go into the common areas she didn't engage with the otherinmates residents and in fact was frightened and creeped out by many of their behaviors (understandably). She had difficulty transitioning from sitting to standing and was assisted with many day-to-day tasks. After constant adjustment of her medications, physical therapy and time she is almost the same as she was back in June.
Almost, not quite. In some ways she's physically stronger than she was then. If she's not tired she moves well with a walker (and is actually willing to use it most of the time), she can walk stairs easier than she did, her endurance has increased. Her memory of the time when she "was someone else" is thankfully blank. When she tries to remember things from then we try to dissuade her since it was such an ugly time. Her short-term memory has suffered and her long-term memory isn't quite as sharp, but she's still improving so that may change.
All that means it's time for her to move on. When we placed her in the facility we were told something to the effect of when you move in, you don't ever move out. People don't recover from dementia, they just get worse. But when the dementia is in large part created by chemicals it can be reversed. My mom wants to get out of the "nuthouse" and away from the "crazy people." And we agree that she needs surroundings that are more stimulating and more open.
Now we're looking for a new home. She can't live on her own, she needs help with medications and meals and cleaning, and really needs someone to periodically check on her to make sure she is ok. She's willing to give up her independence to a point, but still wants to be able to come and go at her own whim. That's fine, but she can't drive again and that will be limiting (although she still has hopes that she'll improve enough that we'll return her car keys) (which won't happen). The type of place we want is an assisted living facility that also has transitional areas for nursing care and dementia care. Those places are few and far between.
My bro and I took my mom to see one such place yesterday. We had dinner in their very nicely appointed dining room (tablecloths and linen napkins and wait-staff included!), toured the spacious building, common spaces and activity rooms, watched some of the residents as they interacted and then looked at the personal rooms. They were small.
My mom moved last year from a very large crowded home, with a 1000 square foot living room, to her current 2 bedroom smaller unit. Now she's looking at something under 600 square feet total and she's freaking out. She has so much "stuff" that it'll never fit into something so small and she loves all her "stuff." Yes, her "stuff" is mostly incredible; antiques, rarities, collectibles, folk-art from around the world. But it's just "stuff." Until she's willing to part with some of it, she won't be able to move. Until we find a place that fits all of the family's criteria, and all of hers, she remains with the people she's fondly calling "crazy." Hopefully she'll get enough of crazy that she'll adjust her hopes and we can find an affordable, lovely, comfortable, stimulating and safe place that is acceptable to us all.
These days my mom is living in a dementia oriented assisted living facility. When she was initially discharged from hospital #3 and delivered to her room she was confused, weak, slightly agitated. She spent most of her time the next couple of weeks in her own room; she had had enough of the 24 hour sitters watching her every move. When she did go into the common areas she didn't engage with the other
Almost, not quite. In some ways she's physically stronger than she was then. If she's not tired she moves well with a walker (and is actually willing to use it most of the time), she can walk stairs easier than she did, her endurance has increased. Her memory of the time when she "was someone else" is thankfully blank. When she tries to remember things from then we try to dissuade her since it was such an ugly time. Her short-term memory has suffered and her long-term memory isn't quite as sharp, but she's still improving so that may change.
All that means it's time for her to move on. When we placed her in the facility we were told something to the effect of when you move in, you don't ever move out. People don't recover from dementia, they just get worse. But when the dementia is in large part created by chemicals it can be reversed. My mom wants to get out of the "nuthouse" and away from the "crazy people." And we agree that she needs surroundings that are more stimulating and more open.
Now we're looking for a new home. She can't live on her own, she needs help with medications and meals and cleaning, and really needs someone to periodically check on her to make sure she is ok. She's willing to give up her independence to a point, but still wants to be able to come and go at her own whim. That's fine, but she can't drive again and that will be limiting (although she still has hopes that she'll improve enough that we'll return her car keys) (which won't happen). The type of place we want is an assisted living facility that also has transitional areas for nursing care and dementia care. Those places are few and far between.
My bro and I took my mom to see one such place yesterday. We had dinner in their very nicely appointed dining room (tablecloths and linen napkins and wait-staff included!), toured the spacious building, common spaces and activity rooms, watched some of the residents as they interacted and then looked at the personal rooms. They were small.
My mom moved last year from a very large crowded home, with a 1000 square foot living room, to her current 2 bedroom smaller unit. Now she's looking at something under 600 square feet total and she's freaking out. She has so much "stuff" that it'll never fit into something so small and she loves all her "stuff." Yes, her "stuff" is mostly incredible; antiques, rarities, collectibles, folk-art from around the world. But it's just "stuff." Until she's willing to part with some of it, she won't be able to move. Until we find a place that fits all of the family's criteria, and all of hers, she remains with the people she's fondly calling "crazy." Hopefully she'll get enough of crazy that she'll adjust her hopes and we can find an affordable, lovely, comfortable, stimulating and safe place that is acceptable to us all.
Sunday, September 13, 2009
The high cost of being sick
In the middle of all this hoohaw about health care and the debate about coverage and the yelling and lies and insinuations and "death panels" and "patriots" toting guns outside of the President's speeches, the talking heads are ignoring the little picture. On June 30th my mom went to the hospital with chest pains, was mistakenly medicated with inappropriate drugs that made her crazy, stayed in that one hospital for 13 days, went to a nursing home for a night, then to another hospital for another 9 days, then 4 days in assisted living, went back to hospital #1 due to a fall (caused in no small part by the medications), then spent 20 days at yet another hospital. Now the bills are appearing.
In the first hospital the room was $5,750 each day. The room ONLY. A baby aspirin, 81mg tab, was $18.94. Yes, $18.94 for a baby aspirin. Acetaminophen 325 mg, a very basic generic tylenol drug, cost $21.91 per tablet. In all, oral medications for the first hospital stay (including the ones that caused this whole problem) were over ten thousand dollars. That's not even including the injected drugs or the inhaled drugs which totaled more than another six thousand dollars.
This first hospital stay cost $140,700. That's not including the doctors: the hospitalists, the cardiologist, the psychiatrist, the therapists, the whothehellknowsists. They charge separately. If that isn't bad enough, there are two more hospitals which have yet to send an invoice or statement.
My mom has very good insurance, but even so this could cost her tens of thousands of dollars. What about someone who has no insurance? What about the poor schmuck who gets this statement from the hospital and owes every single cent? There are states where you can buy a lovely house for less than this episode.
It all makes me so angry I could scream. My mom is feeling better now, slowly rehabilitating her body and trying to stabilize with her new level of cognition. She's living in an assisted living facility geared toward dementia residents. There are people screaming all the time, people who walk in her room and get in her face, people who, frankly, scare the crap out of her by following her around and making weird noises. And this is one of the very GOOD dementia facilities. With some stability she may be able to go to a facility less geared toward dementia but she'll always need 24 hour care.
My mom is an elderly lady who had chest pains, got incredible full medical care (although she shouldn't have needed it if they hadn't made a mistake) and it could cost her every single cent she had saved despite the fact that she's insured. This isn't right, it isn't fair, and shouldn't happen in our wonderful country. Health care debate? To me there is no debate. We need affordable care with reasonable costs. We need politicians who don't accept money from the insurance industry or the drug industry or the hospital industry and then make decisions based upon that money. We need truth and honesty and civil discussion. We need change and we need it now.
In the first hospital the room was $5,750 each day. The room ONLY. A baby aspirin, 81mg tab, was $18.94. Yes, $18.94 for a baby aspirin. Acetaminophen 325 mg, a very basic generic tylenol drug, cost $21.91 per tablet. In all, oral medications for the first hospital stay (including the ones that caused this whole problem) were over ten thousand dollars. That's not even including the injected drugs or the inhaled drugs which totaled more than another six thousand dollars.
This first hospital stay cost $140,700. That's not including the doctors: the hospitalists, the cardiologist, the psychiatrist, the therapists, the whothehellknowsists. They charge separately. If that isn't bad enough, there are two more hospitals which have yet to send an invoice or statement.
My mom has very good insurance, but even so this could cost her tens of thousands of dollars. What about someone who has no insurance? What about the poor schmuck who gets this statement from the hospital and owes every single cent? There are states where you can buy a lovely house for less than this episode.
It all makes me so angry I could scream. My mom is feeling better now, slowly rehabilitating her body and trying to stabilize with her new level of cognition. She's living in an assisted living facility geared toward dementia residents. There are people screaming all the time, people who walk in her room and get in her face, people who, frankly, scare the crap out of her by following her around and making weird noises. And this is one of the very GOOD dementia facilities. With some stability she may be able to go to a facility less geared toward dementia but she'll always need 24 hour care.
My mom is an elderly lady who had chest pains, got incredible full medical care (although she shouldn't have needed it if they hadn't made a mistake) and it could cost her every single cent she had saved despite the fact that she's insured. This isn't right, it isn't fair, and shouldn't happen in our wonderful country. Health care debate? To me there is no debate. We need affordable care with reasonable costs. We need politicians who don't accept money from the insurance industry or the drug industry or the hospital industry and then make decisions based upon that money. We need truth and honesty and civil discussion. We need change and we need it now.
Sunday, August 23, 2009
It's getting easier
Last year was a mostly non-running year for me. Yes, I managed to run 10k during the triathlon, but that was it. The next race I attempted was a dismal failure because I hadn't been running enough. I started the year with a knee injury, had a back injury in the middle of the year and was just discouraged at the end of the year. I never had a decent run that was longer than about 7 miles and even those never felt comfortable.
This year started with long cycling miles and again no running. After the century in March I started running again. Nothing hurt, but it was hard because I hadn't been running regularly for so long. I was starting from zero and it was discouraging.
When I made up our training schedule for the Chicago Marathon I decided that we needed to have lots and lots of runs in the 13-16 mile range. After about a half dozen of those, it no longer feels unnatural to run for hours at a time. Sure, for several reasons there's a lot of walking involved but I'm doing the miles and they're not killing me.
Saturday, Anita and I ran almost 16 miles. We met in Danville way too damn early, 6:15 am. The plan was to run the 8 mile street route that included a couple of hills, then do out-and-backs on the Iron Horse. Unbelievably, it seemed if not easy, then at least not hard. The air was the clearest it's been for ages and for the first couple of hours my breathing was smooth enough for me to blab nonstop. When we finished I was tired, exhausted even, but nothing hurt.
Today I don't even feel like I ran long miles. My lungs don't hurt, my legs don't hurt and even after yet another sleepless night I'm not tired. Yay!
Yesterday afternoon I spent several hours with my mom. She's in an assisted living facility in Oakland that's for dementia patients. Mentally she's the sharpest she's been since all this started, but I think she's still a good 20% less competent than she was two months ago. Physically she's very weak, both in strength and coordination. She's probably very close to her new baseline and seemingly stable.
We've got appointments this week with her two new doctors and we'll know more afterward, including what type of living situation she'll need. I don't think that at this point she needs the very intense scrutiny and care she's receiving now but I also don't think she can live on her own. It's also unclear whether she is indeed stable, and whether any change in situation would set her back. But for now, at least I was able to talk with her. I didn't think I'd have that again.
This year started with long cycling miles and again no running. After the century in March I started running again. Nothing hurt, but it was hard because I hadn't been running regularly for so long. I was starting from zero and it was discouraging.
When I made up our training schedule for the Chicago Marathon I decided that we needed to have lots and lots of runs in the 13-16 mile range. After about a half dozen of those, it no longer feels unnatural to run for hours at a time. Sure, for several reasons there's a lot of walking involved but I'm doing the miles and they're not killing me.
Saturday, Anita and I ran almost 16 miles. We met in Danville way too damn early, 6:15 am. The plan was to run the 8 mile street route that included a couple of hills, then do out-and-backs on the Iron Horse. Unbelievably, it seemed if not easy, then at least not hard. The air was the clearest it's been for ages and for the first couple of hours my breathing was smooth enough for me to blab nonstop. When we finished I was tired, exhausted even, but nothing hurt.
Today I don't even feel like I ran long miles. My lungs don't hurt, my legs don't hurt and even after yet another sleepless night I'm not tired. Yay!
Yesterday afternoon I spent several hours with my mom. She's in an assisted living facility in Oakland that's for dementia patients. Mentally she's the sharpest she's been since all this started, but I think she's still a good 20% less competent than she was two months ago. Physically she's very weak, both in strength and coordination. She's probably very close to her new baseline and seemingly stable.
We've got appointments this week with her two new doctors and we'll know more afterward, including what type of living situation she'll need. I don't think that at this point she needs the very intense scrutiny and care she's receiving now but I also don't think she can live on her own. It's also unclear whether she is indeed stable, and whether any change in situation would set her back. But for now, at least I was able to talk with her. I didn't think I'd have that again.
Sunday, August 16, 2009
Training continues
On Saturday we ran 18 miles on the Alameda Creek Trail. Bree, Anita and I showed up to run at 6:30 am, hoping to beat the heat. We did that, but we couldn't beat the smoke from the fires blazing in the Bay Area. We were surrounded by fires to the south and fires to the east. My hopes that running near the bay would let us experience clearer air weren't realized.
The weather would have been perfect for running if not for the smoke. Even bright and early we could see the heavy haze. The sunrise was eerie red/orange and obscured. Anyway, we started slow, continued slower, and ended up walking almost the entire last mile. By then we were not only tired, we were all having breathing problems (especially me). But we got the miles in, had some great conversations and enjoyed being able to get out there and spend more than 4 hours on our feet. We are indeed fortunate to be able to do that.
Today was the annual Oakland A's Stitch 'n' Pitch game. Our large crowd from past years dwindled down to ... me. Luckily my bro and his family decided to take a break too and they joined me. It was "Turn Back the Clock Day" with a whole 80 year nostalgia theme (including the uniforms) and they gave away pretty cool jerseys. The SnP premium was a strange little drawstring backpack shaped like a shirt, with the A's logo and the SnP logo. We weren't going to stay for the entire game since we had other things that had to get done.
I'm a very unlucky sports fan. I won't watch my favorite teams on television since they always, always lose when I do. When I show up in person my average is still pretty low, although I've seen one or two winning games. So when it began to look like the A's were falling apart, we left. I was quite gratified to see they ended up winning, all because we left.
The latest mom news is that on Friday she was discharged from the hospital and taken to what might be, may be, could be her final home. It's an assisted living facility near Lake Merritt in Oakland which specializes in dementia residents. It's also one of only two such facilities in the area with a vacancy, that we thought would accept my mom. It would be much worse if it doesn't work out. It's been very hard for me to accept that she isn't going home, that she'll spend the rest of her life in a dingy little room that won't fit any of her treasures that she's spent her life collecting. I cry every time I think of it. In fact, I'm crying now. I can't believe it's come to this.
The weather would have been perfect for running if not for the smoke. Even bright and early we could see the heavy haze. The sunrise was eerie red/orange and obscured. Anyway, we started slow, continued slower, and ended up walking almost the entire last mile. By then we were not only tired, we were all having breathing problems (especially me). But we got the miles in, had some great conversations and enjoyed being able to get out there and spend more than 4 hours on our feet. We are indeed fortunate to be able to do that.
Today was the annual Oakland A's Stitch 'n' Pitch game. Our large crowd from past years dwindled down to ... me. Luckily my bro and his family decided to take a break too and they joined me. It was "Turn Back the Clock Day" with a whole 80 year nostalgia theme (including the uniforms) and they gave away pretty cool jerseys. The SnP premium was a strange little drawstring backpack shaped like a shirt, with the A's logo and the SnP logo. We weren't going to stay for the entire game since we had other things that had to get done.
I'm a very unlucky sports fan. I won't watch my favorite teams on television since they always, always lose when I do. When I show up in person my average is still pretty low, although I've seen one or two winning games. So when it began to look like the A's were falling apart, we left. I was quite gratified to see they ended up winning, all because we left.
The latest mom news is that on Friday she was discharged from the hospital and taken to what might be, may be, could be her final home. It's an assisted living facility near Lake Merritt in Oakland which specializes in dementia residents. It's also one of only two such facilities in the area with a vacancy, that we thought would accept my mom. It would be much worse if it doesn't work out. It's been very hard for me to accept that she isn't going home, that she'll spend the rest of her life in a dingy little room that won't fit any of her treasures that she's spent her life collecting. I cry every time I think of it. In fact, I'm crying now. I can't believe it's come to this.
Monday, August 10, 2009
More of the same again
Somehow last week slipped away without my noticing it. Another week of not enough exercise, not enough sleep and mom still in the hospital. My Saturday planned run of 17-18 miles became a slow run:walk of 11 miles. Since that was 7 miles longer than I wanted, I was satisfied. It doesn't hurt the training schedule because I've built so many long runs into it that it doesn't matter if we backtrack one week.
The best part of the week was Sunday. I couldn't sleep Saturday night so I got up and did my paperwork, bills and filing until about 3 am. I went to bed for about 4 hours and got up and cleaned house. I haven't done any housework since the whole mom-in-the-hospital thing started over a month ago so it's wonderful having a clean, relatively dust-free environment for living. I cleaned, did laundry, ran errands and felt like I had accomplished more than I have in ages.
My mom isn't progressing at all. While she has some times when she isn't aggressive or violent she hasn't had any times where she's living in the present and knows what is going on. She's confused, paranoid and angry. She finally managed to lose one of her very expensive hearing aids, so I removed the other one since she can't remember to use them correctly anyway. Along with her mind she's lost lots of weight (which would thrill her if she realized it), muscle and balance. The doctor keeps trying different meds but my mom doesn't always agree to take them since she thinks she's being poisoned. She calls me and with slurred words talks nonsense about things that happened 30 years ago. It's heartbreaking. I can't see an end to this or any happy solution.
The best part of the week was Sunday. I couldn't sleep Saturday night so I got up and did my paperwork, bills and filing until about 3 am. I went to bed for about 4 hours and got up and cleaned house. I haven't done any housework since the whole mom-in-the-hospital thing started over a month ago so it's wonderful having a clean, relatively dust-free environment for living. I cleaned, did laundry, ran errands and felt like I had accomplished more than I have in ages.
My mom isn't progressing at all. While she has some times when she isn't aggressive or violent she hasn't had any times where she's living in the present and knows what is going on. She's confused, paranoid and angry. She finally managed to lose one of her very expensive hearing aids, so I removed the other one since she can't remember to use them correctly anyway. Along with her mind she's lost lots of weight (which would thrill her if she realized it), muscle and balance. The doctor keeps trying different meds but my mom doesn't always agree to take them since she thinks she's being poisoned. She calls me and with slurred words talks nonsense about things that happened 30 years ago. It's heartbreaking. I can't see an end to this or any happy solution.
Monday, August 3, 2009
More of the same
Things with mom aren't improving at all. She's still in County, still being tied to the bed at times, still being drugged senseless medicated, still delusional and confused and confrontational and violent. Let's not forget pitiful, which she is in large measure. Many of you have had the bad fortune to have to walk through a nursing home, hearing the old folks babbling incoherently, seeing them tied to wheelchairs or left in bed. You might have been lucky that your reason for being there didn't involve one of those sad elders, or maybe you just weren't emotionally vested in their well-being. Let me tell you, it's a whole lot of different when it's someone you love. Someone you know very well, someone who depends upon you to see that they're ok, to make sure they're treated right, to soothe them and console them if they're frightened or confused. You have to tell your loved one that no, you can't take them home. No, they have to stay there. It hurts, and their violent reaction can hurt worse.
Anyway, her doctor is trying a(nother) new medication. Hopefully this will be the one that calms her down. The doctor has said that it's ok if she's hallucinating and delusional, as long as she isn't violent. Great.
I was able to take a break this weekend. Since my mom currently hates me and the sight of me just agitates her worse, I stayed away from the hospital. Instead, I went for a run.
Saturday morning I met up with Anita and Bree for a planned 14-15 miler. I wanted to run at least 14 miles and since we haven't met our mileage goals yet, we decided to set the goal higher and then when we wanted to stop early, we'd still have our miles complete. Circuitous thinking, but if it works then who cares. We met in Danville with the plan of running the old street route of 8 miles and finishing on the Iron Horse. We took off on time (since all of us have this being-on-time thing and tend to arrive early). The air was cool, the sun was rising, the wind was light and fresh.
We ran the route with mostly a 4:1 run:walk pattern. There were two hills that we each took at our own pace; Bree and I walked a goodly portion and Anita blasted away. We did a little detour at the end because I didn't want to get back to start without a full 8 miles. We refueled, watered up (and down) and were on our way. We headed south along the trail, meaning to get the sunnier part done first. Bree decided to let us go on ahead and so we did.
I don't even remember what the plan was for the mileage there, but we kept on running. The wind was in our face on the way out and I knew it would be better going the other way. There was a lot of walking involved, probably more along the lines of 3:2. It helped with breathing and energy. When we got back we discovered that we had completed about another 6 miles, leaving only a short out and back to finish.
We met up with Bree, ran:walked a bit with her and then without her. The trail was crowded at that point, lots of runners, cyclists, families, dogs. We ended up with a lot of dodging and excuse me's and hi's and coming throughs and on your lefts and good mornings and cute dog! And we went slower and slower. At about the 1 mile mark we turned around and staggered back. It was literally "let's run to the next street. No, let's run to that tree. Ok, we can make it to the bench. Keep going until the garbage can. Well, let's run until the dogs. Oh, we might as well run to the corner." Walk walk run run. We ran in the last couple of tenths, I looked at Mr. Garmin and realized that to get a nice round number we'd have to keep going. I knew that we had been in a couple of places without reception and we had more than likely already run the full amount but we ran on, me staring at my wrist until the numbers changed to 16 miles.
Holy schmoley, we were tired. We had done more walking than makes me happy but if it had been a race we would have been well within the cut-off times. My legs had that strange tingley blood-moving feeling from my bruised toes to my hips, but they didn't hurt. I was a little overheated, a little dehydrated and a lot nauseous. We hung out for a while to cool down and chat, congratulated ourselves on getting it done and scattered on our ways.
Sunday I had another break when I met with Claudia for mani/pedi's and dinner. I hadn't cut my nails since the pedi in Vegas and I was way overdue. It was restful and soothing and my toes are nice and pretty (even the one where the nail will probably fall off within the next week - ew). Afterward we had a little champagne tasting with appetizers and then Mexican food (a huge chicken burrito), the best meal I've had for weeks. We caught up on everything in our lives and then Claudia let me babble on (and on) (and on) about my mom and it helped enormously to get it out of my system. I drove away feeling relaxed and, dare I say it, happy. Thank you Ms. C!
Then it was time to get back into the real world with doctors and nurses and banks and bills and no checks yet and assisted living places and -- oh yeah -- my job. The break was much needed, much appreciated and will allow me to retain a bit of hope for normalcy for a while longer.
Anyway, her doctor is trying a(nother) new medication. Hopefully this will be the one that calms her down. The doctor has said that it's ok if she's hallucinating and delusional, as long as she isn't violent. Great.
I was able to take a break this weekend. Since my mom currently hates me and the sight of me just agitates her worse, I stayed away from the hospital. Instead, I went for a run.
Saturday morning I met up with Anita and Bree for a planned 14-15 miler. I wanted to run at least 14 miles and since we haven't met our mileage goals yet, we decided to set the goal higher and then when we wanted to stop early, we'd still have our miles complete. Circuitous thinking, but if it works then who cares. We met in Danville with the plan of running the old street route of 8 miles and finishing on the Iron Horse. We took off on time (since all of us have this being-on-time thing and tend to arrive early). The air was cool, the sun was rising, the wind was light and fresh.
We ran the route with mostly a 4:1 run:walk pattern. There were two hills that we each took at our own pace; Bree and I walked a goodly portion and Anita blasted away. We did a little detour at the end because I didn't want to get back to start without a full 8 miles. We refueled, watered up (and down) and were on our way. We headed south along the trail, meaning to get the sunnier part done first. Bree decided to let us go on ahead and so we did.
I don't even remember what the plan was for the mileage there, but we kept on running. The wind was in our face on the way out and I knew it would be better going the other way. There was a lot of walking involved, probably more along the lines of 3:2. It helped with breathing and energy. When we got back we discovered that we had completed about another 6 miles, leaving only a short out and back to finish.
We met up with Bree, ran:walked a bit with her and then without her. The trail was crowded at that point, lots of runners, cyclists, families, dogs. We ended up with a lot of dodging and excuse me's and hi's and coming throughs and on your lefts and good mornings and cute dog! And we went slower and slower. At about the 1 mile mark we turned around and staggered back. It was literally "let's run to the next street. No, let's run to that tree. Ok, we can make it to the bench. Keep going until the garbage can. Well, let's run until the dogs. Oh, we might as well run to the corner." Walk walk run run. We ran in the last couple of tenths, I looked at Mr. Garmin and realized that to get a nice round number we'd have to keep going. I knew that we had been in a couple of places without reception and we had more than likely already run the full amount but we ran on, me staring at my wrist until the numbers changed to 16 miles.
Holy schmoley, we were tired. We had done more walking than makes me happy but if it had been a race we would have been well within the cut-off times. My legs had that strange tingley blood-moving feeling from my bruised toes to my hips, but they didn't hurt. I was a little overheated, a little dehydrated and a lot nauseous. We hung out for a while to cool down and chat, congratulated ourselves on getting it done and scattered on our ways.
Sunday I had another break when I met with Claudia for mani/pedi's and dinner. I hadn't cut my nails since the pedi in Vegas and I was way overdue. It was restful and soothing and my toes are nice and pretty (even the one where the nail will probably fall off within the next week - ew). Afterward we had a little champagne tasting with appetizers and then Mexican food (a huge chicken burrito), the best meal I've had for weeks. We caught up on everything in our lives and then Claudia let me babble on (and on) (and on) about my mom and it helped enormously to get it out of my system. I drove away feeling relaxed and, dare I say it, happy. Thank you Ms. C!
Then it was time to get back into the real world with doctors and nurses and banks and bills and no checks yet and assisted living places and -- oh yeah -- my job. The break was much needed, much appreciated and will allow me to retain a bit of hope for normalcy for a while longer.
Sunday, July 26, 2009
Heavens to Betsy!
This is where I'm supposed to be writing about my wonderful half marathon experience this morning at the San Francisco Marathon. I'd talk about how it's one of my favorite local races that I've run numerous times. How I was unable to run it last year because of my knee injury. How the expo was pretty good this year, even though they moved it way the hell away from the host hotel (and BART). Then I'd say how the early rising was a pain in the butt. How the weather was glorious, the crowds cheerful, the race fun.
That last part didn't happen because I was at the Contra Costa County Regional Medical Center (i.e. County Hospital) until very late, listening to my mother screaming at the top of her lungs while secured to a bed with four point restraints.
Yesterday started with a visit to my mom at the Home (as I'll call it). It was the first time since she moved in there on Tuesday that I went to see her; general opinion was that she needed to have time on her own to fit in. She was unhappy though calm, but not too with it. She was sitting in her big red chair crabbing away when I noticed her skirt. Hmm, I thought to myself. I didn't bring a skirt with her clothes. Wonder where she got that.
Sadly enough, it wasn't a skirt. It was one of her tops that she had either stepped into or pulled all the way down, neither of those seeming too likely because of the tight neckline. I pointed out that it was tight since it wasn't, in fact, a skirt. She reasonably said that was ok, she liked it. And she liked it until we had to cut it off of her at John Muir Medical Center, Walnut Creek.
No, I'm not confused about the hospital. After spending time with my mom I went home. Within a half hour of arriving home I received a call from the Home that they had found my mom on the floor where she had apparently fallen, and she said she had a pain in her leg. So they called 911 who sent an ambulance which took her to JMMC-WC emergency room. I rushed over there, not wanting anyone to drug her up again.
It wasn't very busy in the ER and she had lots of people around her. At this point she told me that she had been fine at the Home, that she had asked lots of people to help her up and they all refused. Understandable, if she had truly been injured they could have made it worse. The nurses and aids were trying to figure out her strange clothing ("why is she wearing her shirt as a skirt?") ("why is she barefoot?") and looking at her vast and numerous bruises from the previous hospitalizations and the new fall. Although she was sore, her biggest pain was in her belly. Because her sk/shirt was too tight. We cut it off, gave her some hospital sweat pants and the pain got much less. They brought in a walker and she was able to slowly make her way to the bathroom and slowly make her way back.
She doesn't like to use a walker, it makes her feel old. She likes a cane but isn't allowed to have one since it can be used as a weapon. While in the ER she agreed that she would use a walker if they gave her one.
My mom was alert but confused and not tracking conversations. Every single conversation that someone tried to have with her became either a demand for ice cream or a plea for their beautiful red shoes and belt. She lacked focus but was calm. It was agreed that she could return back to the Home, the only question was how. A transport would have taken up to 2 hours to get there, or I could drive her. I had a serious conversation with her and she agreed that if I drove we'd go directly back to the Home with no stops.
Right. I should have known better. As soon as we drove off she started saying "I MUST have something to eat" and demanding that we stop for dinner at a restaurant. Mind, she was wearing hospital sweatpants, hospital sock/slippers, a dirty tee shirt and didn't have her glasses. Nonetheless we MUST stop. When I continued driving, saying we weren't stopping, she looked at me incredulously and asked if I was serious. When she realized I was she started getting angry.
I didn't think I'd be able to get her out of the car, but finally she got out. I insisted that she use the walker and she slowly and angrily, with many pointed comments about me, headed to the door. When we got inside she refused to use the walker and starting yelling that she was hungry. A couple of the Home aides came and told her it was dinner time; she could go to the dining room or eat in her room. She absolutely refused to go to her room, so they started helping her walk to the dining room. But she doesn't like people "hanging" on her, and yelled about that. They brought her a wheelchair and she plopped into it, muttering about how she hated it there, hated their food, hated this and that. All while pointedly ignoring me, the villain for taking her there.
I was assured that they would take care of her so I left her in their care. I got home, started putting out my running clothes for the race (since I had to arise at 4:30 am) and had just pinned my bib on my shirt. The phone rang, the Home again. I was very, very apologetically told that my mom had gotten completely out of hand and they had to call the police and fire department to remove her.
She had walked out of the facility and was down the street before they could stop her and bring her back (I never found out if she was using the hated walker on this great escape). When they reentered the building she started yelling, hitting and kicking. She got a hold of a pencil and threatened to kill herself with it. So she was placed on a gurney with padded restraints at wrist and ankle, still yelling and cursing and twisting to get free.
Since she was removed as a 5150 (an involuntary psychiatric hold) she was taken this time to County. I didn't even know what "County" was and had to call the police department to confirm that it was, in fact, the CoCo County Med Center in Martinez which has a psych ward. In other plainer words, it was the county hospital for crazy people. It took me a while to get there (each of her hospitalizations is getting more distant -- look out Sacramento ...) and then I had to wait to be admitted to the ER (County Med Center, remember? It was a crowded late Saturday afternoon).
I walked in and heard my mom before I saw her. She was in a curtained room, fully restrained, and mad as hell. She told me to release her and I told her I couldn't, they were afraid she'd hurt herself or someone else. She was astounded that I could believe them, and not her. My mom was raving about gangsters chasing her down the street and tying her up and she'd never talk to her mother again because it was her fault (Grama died 11 years ago, so at least she was right about never talking to her again). Then she stated she had to be released so she could walk to the bathroom.
But a 5150 patient wasn't going to be released, even for a moment, before she was seen by a doctor (which could be quite some time since she wasn't bleeding, nothing was broken, wasn't in danger of crumping on the spot). She was offered a bedpan and angrily refused. She again and again told me to release her, called me some horrible names and just raved about how she was being persecuted. "I won't forget this Amy!" and I sadly replied that I was sure she would, that was part of the problem. She kept yelling at me, and for a nurse, to let her go to the bathroom. It finally got bad enough that she agreed to use the bedpan and I left the area, knowing that my presence was only exacerbating the situation. I didn't see my mom again that night.
I sat down outside her cubicle and waited for a doctor to come see her. Remember, this is a frail, sick, 81 year old woman with COPD, high blood pressure, a heart condition and various and assorted other physical ailments. She started really hollering. Loudly. Very very loudly. Calling for NURSE. Then calling for DOCTOR. Then just plain old yelling HELP!!!
And I just sat outside her room while my heart was slowly smashed into smithereens. I thought I had gone through the worst of times with her, thought it couldn't get any more horrible, but I was wrong. She'd pause for a short while, then continue on. If anyone went in to see her she'd just rave about being released, ask for water, ask to urinate (my mom is very proper and DOESN'T pee - as she loudly informed a nurse). The staff just left her alone.
I asked one of the nurses if they were used to this since they truly didn't even flinch when my mom yelled (while I cringed more and more each time). Yup, it happens frequently and just wait until a sick baby was brought in if I wanted to really hear something (and that happened, but my mom out-volumed even a sick, angry, screaming baby). This went on, and on, and on. I wasn't going to leave her alone there in that condition.
Finally a frazzled ER doc came to talk with me and told me that they were going to admit her but it would take a while because they were busy; first the hospitalist had to see her and then they had to find a bed. It could take a couple of hours and I said I'd just wait until she was settled somewhere. More than 2 hours after she arrived they finally gave her some Haldol to calm her (when they told me it was only 2 mg I told them we were gonna need a bigger boat). But mom continued to yell.
One thing that I had to do over and over and over yesterday was repeat her recent health/hospitalization history for the month, since this whole nightmare started. I'm getting very practiced at both the long involved version and just the bullet-point version. I think I really should just type it up and make copies for everyone, updating after every new horror. Each nurse, each aide, each admitting tech, each doctor asks the same questions, needs the same information. Each time I had to tell it I got a little more upset, just hearing myself tell what's happened to my formerly independent mother. And mom continued to yell.
Although there were signs posted telling people not to use their electronic equipment, everyone was feeling free to ignore them. I did the same and texted and tweeted as I sat there waiting. I took a very short break to eat my dinner (a Clif bar in the car; yum) and I hurried back so I wouldn't miss the admitting doctor.
At this point my mom started calling for people by name. The one she finally hit upon was Betsy. She loudly, at the top of her lungs, and repeatedly called for Betsy. BETTTTTSSSSSY!! BETTTSSSY!! Over and over and louder and good grief, how can she keep that up? Various staff members looked over and asked if I was Betsy since nobody working there was Betsy. I had to say no, I'm not Betsy. And it continued, BETTTTSSSY BETTTTSSSY BETTTTSSSY.
One of the nurses whispered to me that one reason it was taking so long was they just got 11 brand new first year residents. Nice, I just walked in on an episode of ER. This was confirmed when season 5 Lucy Knight walked up and told me she was the admitting doctor. Ok, it wasn't her but it a young (very young) woman like her. She told me that they were indeed admitting my mom as soon as they found a bed and don't worry, they have a geri/psych doc who is wonderful (but who won't be around until Monday). She convinced me to leave, telling me there wasn't anything I could do and it could be hours until a bed was found.
At 11:25 pm I headed out of there to the getting-hoarse-but-still-loud cries of BETTTTSSSY BETTTTSSSY BETTTTSSSY!!!! And I just want to know:
Who the hell is Betsy?
That last part didn't happen because I was at the Contra Costa County Regional Medical Center (i.e. County Hospital) until very late, listening to my mother screaming at the top of her lungs while secured to a bed with four point restraints.
Yesterday started with a visit to my mom at the Home (as I'll call it). It was the first time since she moved in there on Tuesday that I went to see her; general opinion was that she needed to have time on her own to fit in. She was unhappy though calm, but not too with it. She was sitting in her big red chair crabbing away when I noticed her skirt. Hmm, I thought to myself. I didn't bring a skirt with her clothes. Wonder where she got that.
Sadly enough, it wasn't a skirt. It was one of her tops that she had either stepped into or pulled all the way down, neither of those seeming too likely because of the tight neckline. I pointed out that it was tight since it wasn't, in fact, a skirt. She reasonably said that was ok, she liked it. And she liked it until we had to cut it off of her at John Muir Medical Center, Walnut Creek.
No, I'm not confused about the hospital. After spending time with my mom I went home. Within a half hour of arriving home I received a call from the Home that they had found my mom on the floor where she had apparently fallen, and she said she had a pain in her leg. So they called 911 who sent an ambulance which took her to JMMC-WC emergency room. I rushed over there, not wanting anyone to drug her up again.
It wasn't very busy in the ER and she had lots of people around her. At this point she told me that she had been fine at the Home, that she had asked lots of people to help her up and they all refused. Understandable, if she had truly been injured they could have made it worse. The nurses and aids were trying to figure out her strange clothing ("why is she wearing her shirt as a skirt?") ("why is she barefoot?") and looking at her vast and numerous bruises from the previous hospitalizations and the new fall. Although she was sore, her biggest pain was in her belly. Because her sk/shirt was too tight. We cut it off, gave her some hospital sweat pants and the pain got much less. They brought in a walker and she was able to slowly make her way to the bathroom and slowly make her way back.
She doesn't like to use a walker, it makes her feel old. She likes a cane but isn't allowed to have one since it can be used as a weapon. While in the ER she agreed that she would use a walker if they gave her one.
My mom was alert but confused and not tracking conversations. Every single conversation that someone tried to have with her became either a demand for ice cream or a plea for their beautiful red shoes and belt. She lacked focus but was calm. It was agreed that she could return back to the Home, the only question was how. A transport would have taken up to 2 hours to get there, or I could drive her. I had a serious conversation with her and she agreed that if I drove we'd go directly back to the Home with no stops.
Right. I should have known better. As soon as we drove off she started saying "I MUST have something to eat" and demanding that we stop for dinner at a restaurant. Mind, she was wearing hospital sweatpants, hospital sock/slippers, a dirty tee shirt and didn't have her glasses. Nonetheless we MUST stop. When I continued driving, saying we weren't stopping, she looked at me incredulously and asked if I was serious. When she realized I was she started getting angry.
I didn't think I'd be able to get her out of the car, but finally she got out. I insisted that she use the walker and she slowly and angrily, with many pointed comments about me, headed to the door. When we got inside she refused to use the walker and starting yelling that she was hungry. A couple of the Home aides came and told her it was dinner time; she could go to the dining room or eat in her room. She absolutely refused to go to her room, so they started helping her walk to the dining room. But she doesn't like people "hanging" on her, and yelled about that. They brought her a wheelchair and she plopped into it, muttering about how she hated it there, hated their food, hated this and that. All while pointedly ignoring me, the villain for taking her there.
I was assured that they would take care of her so I left her in their care. I got home, started putting out my running clothes for the race (since I had to arise at 4:30 am) and had just pinned my bib on my shirt. The phone rang, the Home again. I was very, very apologetically told that my mom had gotten completely out of hand and they had to call the police and fire department to remove her.
She had walked out of the facility and was down the street before they could stop her and bring her back (I never found out if she was using the hated walker on this great escape). When they reentered the building she started yelling, hitting and kicking. She got a hold of a pencil and threatened to kill herself with it. So she was placed on a gurney with padded restraints at wrist and ankle, still yelling and cursing and twisting to get free.
Since she was removed as a 5150 (an involuntary psychiatric hold) she was taken this time to County. I didn't even know what "County" was and had to call the police department to confirm that it was, in fact, the CoCo County Med Center in Martinez which has a psych ward. In other plainer words, it was the county hospital for crazy people. It took me a while to get there (each of her hospitalizations is getting more distant -- look out Sacramento ...) and then I had to wait to be admitted to the ER (County Med Center, remember? It was a crowded late Saturday afternoon).
I walked in and heard my mom before I saw her. She was in a curtained room, fully restrained, and mad as hell. She told me to release her and I told her I couldn't, they were afraid she'd hurt herself or someone else. She was astounded that I could believe them, and not her. My mom was raving about gangsters chasing her down the street and tying her up and she'd never talk to her mother again because it was her fault (Grama died 11 years ago, so at least she was right about never talking to her again). Then she stated she had to be released so she could walk to the bathroom.
But a 5150 patient wasn't going to be released, even for a moment, before she was seen by a doctor (which could be quite some time since she wasn't bleeding, nothing was broken, wasn't in danger of crumping on the spot). She was offered a bedpan and angrily refused. She again and again told me to release her, called me some horrible names and just raved about how she was being persecuted. "I won't forget this Amy!" and I sadly replied that I was sure she would, that was part of the problem. She kept yelling at me, and for a nurse, to let her go to the bathroom. It finally got bad enough that she agreed to use the bedpan and I left the area, knowing that my presence was only exacerbating the situation. I didn't see my mom again that night.
I sat down outside her cubicle and waited for a doctor to come see her. Remember, this is a frail, sick, 81 year old woman with COPD, high blood pressure, a heart condition and various and assorted other physical ailments. She started really hollering. Loudly. Very very loudly. Calling for NURSE. Then calling for DOCTOR. Then just plain old yelling HELP!!!
And I just sat outside her room while my heart was slowly smashed into smithereens. I thought I had gone through the worst of times with her, thought it couldn't get any more horrible, but I was wrong. She'd pause for a short while, then continue on. If anyone went in to see her she'd just rave about being released, ask for water, ask to urinate (my mom is very proper and DOESN'T pee - as she loudly informed a nurse). The staff just left her alone.
I asked one of the nurses if they were used to this since they truly didn't even flinch when my mom yelled (while I cringed more and more each time). Yup, it happens frequently and just wait until a sick baby was brought in if I wanted to really hear something (and that happened, but my mom out-volumed even a sick, angry, screaming baby). This went on, and on, and on. I wasn't going to leave her alone there in that condition.
Finally a frazzled ER doc came to talk with me and told me that they were going to admit her but it would take a while because they were busy; first the hospitalist had to see her and then they had to find a bed. It could take a couple of hours and I said I'd just wait until she was settled somewhere. More than 2 hours after she arrived they finally gave her some Haldol to calm her (when they told me it was only 2 mg I told them we were gonna need a bigger boat). But mom continued to yell.
One thing that I had to do over and over and over yesterday was repeat her recent health/hospitalization history for the month, since this whole nightmare started. I'm getting very practiced at both the long involved version and just the bullet-point version. I think I really should just type it up and make copies for everyone, updating after every new horror. Each nurse, each aide, each admitting tech, each doctor asks the same questions, needs the same information. Each time I had to tell it I got a little more upset, just hearing myself tell what's happened to my formerly independent mother. And mom continued to yell.
Although there were signs posted telling people not to use their electronic equipment, everyone was feeling free to ignore them. I did the same and texted and tweeted as I sat there waiting. I took a very short break to eat my dinner (a Clif bar in the car; yum) and I hurried back so I wouldn't miss the admitting doctor.
At this point my mom started calling for people by name. The one she finally hit upon was Betsy. She loudly, at the top of her lungs, and repeatedly called for Betsy. BETTTTTSSSSSY!! BETTTSSSY!! Over and over and louder and good grief, how can she keep that up? Various staff members looked over and asked if I was Betsy since nobody working there was Betsy. I had to say no, I'm not Betsy. And it continued, BETTTTSSSY BETTTTSSSY BETTTTSSSY.
One of the nurses whispered to me that one reason it was taking so long was they just got 11 brand new first year residents. Nice, I just walked in on an episode of ER. This was confirmed when season 5 Lucy Knight walked up and told me she was the admitting doctor. Ok, it wasn't her but it a young (very young) woman like her. She told me that they were indeed admitting my mom as soon as they found a bed and don't worry, they have a geri/psych doc who is wonderful (but who won't be around until Monday). She convinced me to leave, telling me there wasn't anything I could do and it could be hours until a bed was found.
At 11:25 pm I headed out of there to the getting-hoarse-but-still-loud cries of BETTTTSSSY BETTTTSSSY BETTTTSSSY!!!! And I just want to know:
Who the hell is Betsy?
Tuesday, July 21, 2009
It hasn't even been a month
Somehow I feel that this roller coaster ride began months ago instead of merely three weeks ago. I thought that my coping mechanisms were well in place, working properly, but I must have missed the warning label telling me that they would only work overtime for a short period. I was capable and strong for a week, capable for another week but that third week done me in. I got to the (highly annoying) point where absolutely everything was making me cry, I wasn't sleeping, wasn't eating well, wasn't running, wasn't being much use at all. And I'm not at all sure why I'm speaking in the past tense since I don't think I'm over it or able to resume full capability, reason and balance yet.
I'm not going to go into detail here, but the Cliff Notes version is that today my mom was (again) discharged from the hospital into the care of an assisted living facility where they are used to handling patients (residents?) with dementia. My mom is barely coherent, physically weak, bruised and confused. I'm waiting for the phone to ring while hoping it doesn't because we've run out of viable options.
In the middle of all this has been some joy and fun. Saturday morning I met up with Bree, Anita and Olivia for a planned 14 mile run. We managed about 13.75 miles but not all of that was running. My lungs were vastly unhappy. I had had some roses in my office and never even considered that they might cause problems (they were beautiful! Their fragrance was very light! They're my favorite flower! They were a gift from a good friend! They cheered me up! I liked them!). After a couple of days I realized I couldn't get a breath and finally realized why (I'm a little slow on the thinking these days). Add to that the stress and questionable air quality and I was a wheezy runner. I was even a wheezy walker. But it was a beautiful morning in Alameda and we had a good time catching up while we ambled along.
Saturday night was the long-planned outing with Anita and Bree. We had dinner at Blowfish in San Francisco (omg it was the best sushi ever) (and the drinks were fabulous too) (and that dessert was incredible) and then went to the Orpheum to see Wicked. Excuse me, I'm too lazy to post links and too tired to post the great pictures of dinner that I snapped throughout. The play was great, even with the very wide gentleman blocking my entire direct view (I sat sideways, leaning out of my seat into the aisle). I highly recommend it (the play, not the leaning). I also highly recommend having friends like Bree and Anita with which to share an evening.
And speaking of friends, thank you so much to all of you who have checked in by either comment, email or tweet to see how I'm doing. Your friendship and concerns are exactly what's keeping my remaining sanity intact. I'm sorry I haven't been responding to everyone, I'm using most of my "nice" energy when I visit my mom and don't seem to have much left over for correspondence or telephoning. Just know that every one of you is important to me and I hope that someday I can return the favor and give you support when you need it.
I'm not going to go into detail here, but the Cliff Notes version is that today my mom was (again) discharged from the hospital into the care of an assisted living facility where they are used to handling patients (residents?) with dementia. My mom is barely coherent, physically weak, bruised and confused. I'm waiting for the phone to ring while hoping it doesn't because we've run out of viable options.
In the middle of all this has been some joy and fun. Saturday morning I met up with Bree, Anita and Olivia for a planned 14 mile run. We managed about 13.75 miles but not all of that was running. My lungs were vastly unhappy. I had had some roses in my office and never even considered that they might cause problems (they were beautiful! Their fragrance was very light! They're my favorite flower! They were a gift from a good friend! They cheered me up! I liked them!). After a couple of days I realized I couldn't get a breath and finally realized why (I'm a little slow on the thinking these days). Add to that the stress and questionable air quality and I was a wheezy runner. I was even a wheezy walker. But it was a beautiful morning in Alameda and we had a good time catching up while we ambled along.
Saturday night was the long-planned outing with Anita and Bree. We had dinner at Blowfish in San Francisco (omg it was the best sushi ever) (and the drinks were fabulous too) (and that dessert was incredible) and then went to the Orpheum to see Wicked. Excuse me, I'm too lazy to post links and too tired to post the great pictures of dinner that I snapped throughout. The play was great, even with the very wide gentleman blocking my entire direct view (I sat sideways, leaning out of my seat into the aisle). I highly recommend it (the play, not the leaning). I also highly recommend having friends like Bree and Anita with which to share an evening.
And speaking of friends, thank you so much to all of you who have checked in by either comment, email or tweet to see how I'm doing. Your friendship and concerns are exactly what's keeping my remaining sanity intact. I'm sorry I haven't been responding to everyone, I'm using most of my "nice" energy when I visit my mom and don't seem to have much left over for correspondence or telephoning. Just know that every one of you is important to me and I hope that someday I can return the favor and give you support when you need it.
Monday, July 13, 2009
It got worse again
"You BITCH!"
With those lovely words my mother greeted me a couple of days ago. "I can't believe that you, of all people, would do this" she continued. Since I hadn't taken her home, had let the hospital keep her in custody and care, I had become the enemy.
As a runner, "downhill" has always been a good thing to me. It means my path is easy, better, smoother. But "downhill" for the rest of life isn't as good. My mom's condition has has continued to go downhill quickly. Mentally, physically, emotionally. Despite our hopes and the actions of the medical staff my mom is almost certainly about to be put in a mental hospital.
A week ago it looked like changing her medications would calm her down, clear up the mental confusion, steady her moods. Even while giving her some of the most toxic drugs available she has only gotten worse. Suspicious, paranoid, still unable to string together any type of coherent conversation. Her only focus was going home, being by herself. She said she was in prison, locked up, out of her own control and being held against her will.
Unfortunately her physical strength continued to build as her mental state continued to deteriorate. She's able to get up and walk, almost run, even though she's still bent over and stumbling and unsteady. Her anger built day by day.
The hospital decided she was stable and healthy enough to be released. We found what seemed like the perfect, peaceful rehabilitation facility (aka rest home aka nursing home). Since she really couldn't be left alone we hired a sitter, someone who would watch her and make sure she didn't hurt herself.
Early this afternoon she was transported to the place I'll just call "Manor." She didn't want to get in the transport, was rude and vile to the ambulance attendants, ignored me when she saw me waiting at the door. She arrived at her room, continued ignoring me. I introduced the sitter and mom was quite clear in telling her to go away. I was just as clear in telling mom that the sitter was staying.
I had brought clothing and some personal possessions so she could feel more comfortable. I don't know if she didn't recognize them, or just didn't care. She was very cold to me, outright rude to the sitter and ignored the nurse who was trying to do intake. My mom kept asking for my sister's phone number so she could call "the daughter I love" and finally I told her that if she allowed the nurse to do a short exam, the nurse would call my sis for her. My mom cursed, told me to get out of there, so I left.
We had told the Administration, the admitting people and the nursing staff we met that she was not compliant and was very angry and could be very loud and horrible and mean with what she said. We also told the sitter and the sitter's boss the exact condition of my mom. We made it clear, and the hospital discharge papers made it clear, that giving her Haldol would calm her down. Either none of them listened, or they just didn't believe us, because it turned out to be more than they wanted to handle.
I got a call from the sitter about an hour after I left (while I was in the middle of Safeway, shopping). She was in tears and told me my mom had pulled her hair and yelled at her and threw her purse at her. I called the doc, he called the Manor and told them to give her the drug, they told him they would, I called the sitter back, she sounded relieved.
Five hours later I got a call from the Manor telling me that they had called the police twice because they couldn't handle my mom. I was shocked. The nurse told me that while a cop was standing there my mom finally agreed to let them give her the Haldol - 5 hours after I thought she had gotten it. Since my mom was a little quieter after that, it seemed everything would be ok.
I then received a call from a wonderful Walnut Creek Police Officer. She was the one who responded to the second call and was sitting outside the Manor waiting to make sure everything was ok. She just wanted to get the full story about what was going on. I explained the whole over-medicating, dementia/psychosis thing, told her the Manor was well aware of what they were getting. She said that they had called 911 wanting to get an ambulance to take away my mom.
The staff had told the cop that they had spoken with the family, but were unable to produce the staff member who had made the call. Probably since that was a big fat lie, nobody had called me (or my brother). They told the cop they weren't staffed to take care of a high maintenance patient, that they couldn't handle her. They said they couldn't give a patient any medication unless the patient agreed, and my mom didn't want to take anything (this despite my having told the nurse and the administration that I held the power of attorney for health care and that they should give my mom all the drugs on the discharge orders). After a long talk with the very nice and sympathetic cop, who told me that she would note that if the police were called again the police should call me, I called back to the Manor.
I asked to speak with the Administrator in charge. I was told there wasn't one since it was evening. I then asked to speak to whoever was in charge for the evening. I was given the phone number of an offsite nursing supervisor. I told the operator I wanted to speak to whoever currently in the facility was in charge and was connected with the LVN who had called me earlier regarding my mom.
She told me that they didn't have anyone in charge, that the staff knew what they were supposed to do and just did it. I was openly incredulous but she wouldn't put me through to anyone else. I asked why she hadn't called the family when the police were first called, or why she hadn't called the family before it got to that point. She said that she was busy following my mom as she walked around outside and she didn't have a phone with her, "we're not a hospital you know and we're not equipped like a hospital." I asked who had called 911 and she said someone inside. She had no answer as to why that person couldn't have called me.
I asked what had happened to the sitter and was told both "she's scared" and that the sitter had been replaced by another sitter. This was the person who I thought would be the front line of care for my mom. Apparently I paid over $1,100 for 3 days of someone whose only job was to stare at my mom, and call someone if my mom moved. Quite helpful.
I told the LVN to call me if anything else happened, preferably before she called 911 again. So about a hour later she called again to tell me that my mom had never settled, that my mom had twisted her arm and pushed her when the LVN tried to give her some more medication. I asked her to hold the line and called my mom's doctor again. He called the nurse, called different facilities, made a couple of other calls.
At that point it was determined that the Manor would call for transport and have my mom transported to a hospital. Preferably it would be to Concord where there is a hospital with psych intake and triage, where they could provide for my mom and figure out where to go. Unfortunately the closest hospital was where they would probably take her and that was back to Muir, the hospital that broke her in the first place.
Then came calls back and forth; to my brother (being yelled at didn't help me too much), brother to doctor, doctor to hospital, doctor to Manor, doctor to brother, brother to me. At this point my mom was sound asleep and transport was deferred to the morning. Hope were high she'd sleep all night, but I'll be sitting by my phone in case that doesn't happen.
That's where it stands. In the morning my mom will probably be sent to a psychiatric facility, either one specializing in geriatric patients if they have a bed or a general one otherwise. All my mom wants is to go home, she's fixated on going home, and she's going to be locked up because she's incapable of caring for herself and doesn't understand that she's currently mentally incapacitated.
I'm told that's the best solution, that they'll be able to care for her, be able to find medications that will clear up her mind, give her physical and mental therapy that will make her more like herself. I will never be able to forgive myself that it's gotten that far since she trusted me to help her and make any decisions if she was incapable. But that's ok. I know my mom and even if she is fixed, even if she begins thinking straighter than she's thought for years, she will never, ever forgive me either.
With those lovely words my mother greeted me a couple of days ago. "I can't believe that you, of all people, would do this" she continued. Since I hadn't taken her home, had let the hospital keep her in custody and care, I had become the enemy.
As a runner, "downhill" has always been a good thing to me. It means my path is easy, better, smoother. But "downhill" for the rest of life isn't as good. My mom's condition has has continued to go downhill quickly. Mentally, physically, emotionally. Despite our hopes and the actions of the medical staff my mom is almost certainly about to be put in a mental hospital.
A week ago it looked like changing her medications would calm her down, clear up the mental confusion, steady her moods. Even while giving her some of the most toxic drugs available she has only gotten worse. Suspicious, paranoid, still unable to string together any type of coherent conversation. Her only focus was going home, being by herself. She said she was in prison, locked up, out of her own control and being held against her will.
Unfortunately her physical strength continued to build as her mental state continued to deteriorate. She's able to get up and walk, almost run, even though she's still bent over and stumbling and unsteady. Her anger built day by day.
The hospital decided she was stable and healthy enough to be released. We found what seemed like the perfect, peaceful rehabilitation facility (aka rest home aka nursing home). Since she really couldn't be left alone we hired a sitter, someone who would watch her and make sure she didn't hurt herself.
Early this afternoon she was transported to the place I'll just call "Manor." She didn't want to get in the transport, was rude and vile to the ambulance attendants, ignored me when she saw me waiting at the door. She arrived at her room, continued ignoring me. I introduced the sitter and mom was quite clear in telling her to go away. I was just as clear in telling mom that the sitter was staying.
I had brought clothing and some personal possessions so she could feel more comfortable. I don't know if she didn't recognize them, or just didn't care. She was very cold to me, outright rude to the sitter and ignored the nurse who was trying to do intake. My mom kept asking for my sister's phone number so she could call "the daughter I love" and finally I told her that if she allowed the nurse to do a short exam, the nurse would call my sis for her. My mom cursed, told me to get out of there, so I left.
We had told the Administration, the admitting people and the nursing staff we met that she was not compliant and was very angry and could be very loud and horrible and mean with what she said. We also told the sitter and the sitter's boss the exact condition of my mom. We made it clear, and the hospital discharge papers made it clear, that giving her Haldol would calm her down. Either none of them listened, or they just didn't believe us, because it turned out to be more than they wanted to handle.
I got a call from the sitter about an hour after I left (while I was in the middle of Safeway, shopping). She was in tears and told me my mom had pulled her hair and yelled at her and threw her purse at her. I called the doc, he called the Manor and told them to give her the drug, they told him they would, I called the sitter back, she sounded relieved.
Five hours later I got a call from the Manor telling me that they had called the police twice because they couldn't handle my mom. I was shocked. The nurse told me that while a cop was standing there my mom finally agreed to let them give her the Haldol - 5 hours after I thought she had gotten it. Since my mom was a little quieter after that, it seemed everything would be ok.
I then received a call from a wonderful Walnut Creek Police Officer. She was the one who responded to the second call and was sitting outside the Manor waiting to make sure everything was ok. She just wanted to get the full story about what was going on. I explained the whole over-medicating, dementia/psychosis thing, told her the Manor was well aware of what they were getting. She said that they had called 911 wanting to get an ambulance to take away my mom.
The staff had told the cop that they had spoken with the family, but were unable to produce the staff member who had made the call. Probably since that was a big fat lie, nobody had called me (or my brother). They told the cop they weren't staffed to take care of a high maintenance patient, that they couldn't handle her. They said they couldn't give a patient any medication unless the patient agreed, and my mom didn't want to take anything (this despite my having told the nurse and the administration that I held the power of attorney for health care and that they should give my mom all the drugs on the discharge orders). After a long talk with the very nice and sympathetic cop, who told me that she would note that if the police were called again the police should call me, I called back to the Manor.
I asked to speak with the Administrator in charge. I was told there wasn't one since it was evening. I then asked to speak to whoever was in charge for the evening. I was given the phone number of an offsite nursing supervisor. I told the operator I wanted to speak to whoever currently in the facility was in charge and was connected with the LVN who had called me earlier regarding my mom.
She told me that they didn't have anyone in charge, that the staff knew what they were supposed to do and just did it. I was openly incredulous but she wouldn't put me through to anyone else. I asked why she hadn't called the family when the police were first called, or why she hadn't called the family before it got to that point. She said that she was busy following my mom as she walked around outside and she didn't have a phone with her, "we're not a hospital you know and we're not equipped like a hospital." I asked who had called 911 and she said someone inside. She had no answer as to why that person couldn't have called me.
I asked what had happened to the sitter and was told both "she's scared" and that the sitter had been replaced by another sitter. This was the person who I thought would be the front line of care for my mom. Apparently I paid over $1,100 for 3 days of someone whose only job was to stare at my mom, and call someone if my mom moved. Quite helpful.
I told the LVN to call me if anything else happened, preferably before she called 911 again. So about a hour later she called again to tell me that my mom had never settled, that my mom had twisted her arm and pushed her when the LVN tried to give her some more medication. I asked her to hold the line and called my mom's doctor again. He called the nurse, called different facilities, made a couple of other calls.
At that point it was determined that the Manor would call for transport and have my mom transported to a hospital. Preferably it would be to Concord where there is a hospital with psych intake and triage, where they could provide for my mom and figure out where to go. Unfortunately the closest hospital was where they would probably take her and that was back to Muir, the hospital that broke her in the first place.
Then came calls back and forth; to my brother (being yelled at didn't help me too much), brother to doctor, doctor to hospital, doctor to Manor, doctor to brother, brother to me. At this point my mom was sound asleep and transport was deferred to the morning. Hope were high she'd sleep all night, but I'll be sitting by my phone in case that doesn't happen.
That's where it stands. In the morning my mom will probably be sent to a psychiatric facility, either one specializing in geriatric patients if they have a bed or a general one otherwise. All my mom wants is to go home, she's fixated on going home, and she's going to be locked up because she's incapable of caring for herself and doesn't understand that she's currently mentally incapacitated.
I'm told that's the best solution, that they'll be able to care for her, be able to find medications that will clear up her mind, give her physical and mental therapy that will make her more like herself. I will never be able to forgive myself that it's gotten that far since she trusted me to help her and make any decisions if she was incapable. But that's ok. I know my mom and even if she is fixed, even if she begins thinking straighter than she's thought for years, she will never, ever forgive me either.
Wednesday, July 8, 2009
The nightmare worsens
Warning: what follows is a hard look at illness and dementia. It isn't my normal carefree whining about my daily life and is full of pain and sadness. Please don't read this if you think it will upset you. I'm writing it down in the hopes that looking at it in hard print will help me understand what is going on.
When even the doctors are flailing around looking for a solution you know it isn't good. Instead of any improvement my mom is getting worse. She is a fragile shell of confusion and hate and anger.
What started as just another trip to the emergency room by a lonely hypochondriac looking for reassurance has probably turned into the final rational moments my mom will ever have. The first night in the hospital she was given Librium and Ativan. The Librium was because she normally has a drink at night and the doctors were afraid that she might go through withdrawal and have a seizure. The Ativan was given so that she would fall asleep. Both drugs should alleviate any anxiety and help her to relax. Unfortunately a side effect of both sedating drugs is the opposite; agitation resulted almost immediately.
The Librium is also not recommended for elderly patients or patients with dementia. My mother has at the very least mild dementia and she's 81 years old; elderly in anyone's book. Librium was a very bad drug choice. Mixing in the Ativan was a mistake, possibly a fatal one.
Because of the drugs, the morning after she arrived at the hospital she was more confused and uncoordinated than usual. She continued to receive regular doses of Librium twice a day. She saw many doctors/therapists/nurses/aides throughout the day and night and they determined that they should do even more tests.
Another night, more drugs, more confusion. With each change of shift a new set of caretakers would evaluate her, thinking that what they saw was her normal baseline. They didn't realize that she was acting drugged and I didn't know that they were drugging her. I thought she was just uncomfortable in the hospital or that maybe she had even had a stroke or something.
Thursday morning they were almost ready to release her, but the hospital doctor and her shift nurse were convinced she could not leave, since she lives alone. She was evaluated by a physical therapist who agreed that she couldn't be alone. It was determined that what she really needed was some rehabilitation, a short time in a rehab facility (or nursing home). Because of Medicare and insurance rules she would need to spend 3 additional nights at the hospital. She reluctantly agreed to this and was moved to a different floor.
At dinner time she was given some pills and while she was eating she got more and more confused and agitated. She forgot the conversations we had had with the doctors and with the case workers and insisted she wanted to leave. I repeated all the information we had gotten, repeated it a couple of times, but she was very unhappy.
After I left she got even more agitated so they gave her yet more Ativan. She slept, or was semi-conscious, for most of Friday. I spent the day looking at nursing homes and found what I thought would be a lovely rehab facility, near where she lives. Returning to her bedside I found her even more agitated than previously, although she was still focusing and making some sense. Once again at dinner she was given those same pills and once again she got more confused and quarrelsome. To get her to quiet down she was given the last dose of Ativan that put her over the top.
Finally on Saturday morning she was checked out by a new doctor who realized that plain and simple, she was over-medicated and over-sedated. She was mostly asleep for a good part of the day and when she awoke she was angry, confused, hostile. She insisted on leaving, yelled and screamed. The docs realized that she couldn't be given more anti-anxiety meds and decided to just wait until they were all out of her system. The hope was that she'd return to normal.
That hasn't happened. If she's awake she's, for lack of a better term, completely nuts. She's the crazy lady down the hall who keeps yelling, screaming, cursing. A geriatric psychologist was brought in to handle her case and for a while he just observed and also waited to see if she would regain her wits when the drugs wore off. She was given a 24 hour sitter so that they wouldn't have to physically restrain her but to her, the sitter is a jailer. She's physically weak, sometimes able to get out of bed with two people helping her, sometimes able to walk a couple of aided steps to the toilet, often unable to even sit up in bed or feed herself. She has strength in her grip but no coordination.
Yesterday I was there at lunch time while her personal doctor came to see her. She was hostile and dishonest to him, yelled at me, didn't focus on anything other than she had to get out of there and go home. The aide started to feed her lunch and I left to go back to work. My mom had been given her first cup of coffee since she arrived in the hospital; despite asking for it continually they didn't want to give caffeine to a cardiac patient. The aide handed her the cup, warned her that it was hot, and my mom threw it in her face. Right in her eyes. Luckily the poor woman was able to jump back and avoid most of it and wasn't hurt. My mom was proud that she had done this.
Never, and I mean never, in her 81 years has my mom physically abused someone. Verbally yes, rarely she's called someone a fucking bitch and yelled other obscenities. But then she'll quickly hightail it away since she really doesn't like confrontation or fighting or anger. Now she's reveling in it. If she were in her right mind she would be as horrified as I am.
Last night she was so out of control they again had to give her Ativan. This time it didn't even knock her out completely and only made her angrier and more agitated. Today they started her on a new regimen. The doc is trying out Depakote Sprinkles. Yes, they're putting magic fairy dust on her food. This was originally a seizure medication but is being used as a mood stabilizer. This stuff, according to the warnings, is heavy duty toxic and very dangerous. In addition, they're giving her Haldol injections every 8 hours as needed for agitation. Cripes, this stuff is even worse. The warnings clearly says "HALDOL Injection is not approved for the treatment of patients with dementia-related psychosis" and yet the doctor thinks it's the best choice.
When I arrived to see her today she was completely wild. The aide was tying padding on the bed rails to keep her from injuring herself. She demanded to be dressed and taken home. I tried being sweet and loving, she swore at me. As I bent over her bed, she reached up as if to lovingly cradle my face in her hands. As she touched my face her fingers curled up and she tried to claw my face; I backed up in shock. I tried being stern and told her she couldn't talk to people the way she was doing. She cursed. I tried yelling and she yelled back. She continued raving and tears came to my eyes. She smiled an evil smile and said she was glad I was crying. She varied from knowing who I was and then demanding that someone find Amy. Since she was just working herself up I left.
I'm crushed. Seeing your mother this way is something that nobody should ever have to go through. I close my eyes and can see her satisfaction that she was able to inflict damage, can see her wild eyes, hear her hate-filled voice. The doctors have no answers. They don't know if she is suffering permanent brain damage, if the dementia will return to the previous low level or if she'll even come out of this cycle of drugging and agitation.
I'm not an optimistic person by nature, but I need to hope that this isn't the end. I have to believe that sometime soon, within a couple of days, some combination of medications will make my mom calm and reasonable. But even then we need to somehow convince her that she can no longer live alone and certainly won't be able to drive again. There are decisions to make that don't have right answers. It won't be easy or quick or pretty or easy. I don't know what to do.
When even the doctors are flailing around looking for a solution you know it isn't good. Instead of any improvement my mom is getting worse. She is a fragile shell of confusion and hate and anger.
What started as just another trip to the emergency room by a lonely hypochondriac looking for reassurance has probably turned into the final rational moments my mom will ever have. The first night in the hospital she was given Librium and Ativan. The Librium was because she normally has a drink at night and the doctors were afraid that she might go through withdrawal and have a seizure. The Ativan was given so that she would fall asleep. Both drugs should alleviate any anxiety and help her to relax. Unfortunately a side effect of both sedating drugs is the opposite; agitation resulted almost immediately.
The Librium is also not recommended for elderly patients or patients with dementia. My mother has at the very least mild dementia and she's 81 years old; elderly in anyone's book. Librium was a very bad drug choice. Mixing in the Ativan was a mistake, possibly a fatal one.
Because of the drugs, the morning after she arrived at the hospital she was more confused and uncoordinated than usual. She continued to receive regular doses of Librium twice a day. She saw many doctors/therapists/nurses/aides throughout the day and night and they determined that they should do even more tests.
Another night, more drugs, more confusion. With each change of shift a new set of caretakers would evaluate her, thinking that what they saw was her normal baseline. They didn't realize that she was acting drugged and I didn't know that they were drugging her. I thought she was just uncomfortable in the hospital or that maybe she had even had a stroke or something.
Thursday morning they were almost ready to release her, but the hospital doctor and her shift nurse were convinced she could not leave, since she lives alone. She was evaluated by a physical therapist who agreed that she couldn't be alone. It was determined that what she really needed was some rehabilitation, a short time in a rehab facility (or nursing home). Because of Medicare and insurance rules she would need to spend 3 additional nights at the hospital. She reluctantly agreed to this and was moved to a different floor.
At dinner time she was given some pills and while she was eating she got more and more confused and agitated. She forgot the conversations we had had with the doctors and with the case workers and insisted she wanted to leave. I repeated all the information we had gotten, repeated it a couple of times, but she was very unhappy.
After I left she got even more agitated so they gave her yet more Ativan. She slept, or was semi-conscious, for most of Friday. I spent the day looking at nursing homes and found what I thought would be a lovely rehab facility, near where she lives. Returning to her bedside I found her even more agitated than previously, although she was still focusing and making some sense. Once again at dinner she was given those same pills and once again she got more confused and quarrelsome. To get her to quiet down she was given the last dose of Ativan that put her over the top.
Finally on Saturday morning she was checked out by a new doctor who realized that plain and simple, she was over-medicated and over-sedated. She was mostly asleep for a good part of the day and when she awoke she was angry, confused, hostile. She insisted on leaving, yelled and screamed. The docs realized that she couldn't be given more anti-anxiety meds and decided to just wait until they were all out of her system. The hope was that she'd return to normal.
That hasn't happened. If she's awake she's, for lack of a better term, completely nuts. She's the crazy lady down the hall who keeps yelling, screaming, cursing. A geriatric psychologist was brought in to handle her case and for a while he just observed and also waited to see if she would regain her wits when the drugs wore off. She was given a 24 hour sitter so that they wouldn't have to physically restrain her but to her, the sitter is a jailer. She's physically weak, sometimes able to get out of bed with two people helping her, sometimes able to walk a couple of aided steps to the toilet, often unable to even sit up in bed or feed herself. She has strength in her grip but no coordination.
Yesterday I was there at lunch time while her personal doctor came to see her. She was hostile and dishonest to him, yelled at me, didn't focus on anything other than she had to get out of there and go home. The aide started to feed her lunch and I left to go back to work. My mom had been given her first cup of coffee since she arrived in the hospital; despite asking for it continually they didn't want to give caffeine to a cardiac patient. The aide handed her the cup, warned her that it was hot, and my mom threw it in her face. Right in her eyes. Luckily the poor woman was able to jump back and avoid most of it and wasn't hurt. My mom was proud that she had done this.
Never, and I mean never, in her 81 years has my mom physically abused someone. Verbally yes, rarely she's called someone a fucking bitch and yelled other obscenities. But then she'll quickly hightail it away since she really doesn't like confrontation or fighting or anger. Now she's reveling in it. If she were in her right mind she would be as horrified as I am.
Last night she was so out of control they again had to give her Ativan. This time it didn't even knock her out completely and only made her angrier and more agitated. Today they started her on a new regimen. The doc is trying out Depakote Sprinkles. Yes, they're putting magic fairy dust on her food. This was originally a seizure medication but is being used as a mood stabilizer. This stuff, according to the warnings, is heavy duty toxic and very dangerous. In addition, they're giving her Haldol injections every 8 hours as needed for agitation. Cripes, this stuff is even worse. The warnings clearly says "HALDOL Injection is not approved for the treatment of patients with dementia-related psychosis" and yet the doctor thinks it's the best choice.
When I arrived to see her today she was completely wild. The aide was tying padding on the bed rails to keep her from injuring herself. She demanded to be dressed and taken home. I tried being sweet and loving, she swore at me. As I bent over her bed, she reached up as if to lovingly cradle my face in her hands. As she touched my face her fingers curled up and she tried to claw my face; I backed up in shock. I tried being stern and told her she couldn't talk to people the way she was doing. She cursed. I tried yelling and she yelled back. She continued raving and tears came to my eyes. She smiled an evil smile and said she was glad I was crying. She varied from knowing who I was and then demanding that someone find Amy. Since she was just working herself up I left.
I'm crushed. Seeing your mother this way is something that nobody should ever have to go through. I close my eyes and can see her satisfaction that she was able to inflict damage, can see her wild eyes, hear her hate-filled voice. The doctors have no answers. They don't know if she is suffering permanent brain damage, if the dementia will return to the previous low level or if she'll even come out of this cycle of drugging and agitation.
I'm not an optimistic person by nature, but I need to hope that this isn't the end. I have to believe that sometime soon, within a couple of days, some combination of medications will make my mom calm and reasonable. But even then we need to somehow convince her that she can no longer live alone and certainly won't be able to drive again. There are decisions to make that don't have right answers. It won't be easy or quick or pretty or easy. I don't know what to do.
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