Monday, July 27, 2009

Running with No Reservations

Yesterday I was supposed to run a half marathon but I didn't. In lieu of that I should have gone off and run 13 miles on my own but I didn't. Last week I was scheduled to run on Monday and/or Tuesday, and Wednesday and/or Thursday. I didn't do that either. I hadn't run since our stumbling almost 14 miler 9 days ago. I hadn't done any cross training for a week either. Add to that a complete lack of sleep and poor nutrition and more stress than I've ever experienced and it all added up to one sad puppy.

Every day last week I'd say I would get up early and run. When that didn't happen I said I'd run after work. Neither morning nor evening runs occurred. Only guilt and my lack of activity and training was present.

Today I again set my alarm to get up early to run and again I didn't do it. When I got home from work I was tired and beaten so I took a nap. After a short time I was jumpy and twitchy and decided it was run time. Since it was about 90 degrees with icky air quality outside when I got home I decided that the treadmill would do in a pinch. I changed, grabbed some cold water, turned the fan onto high speed and plugged in the 'mill.

What to watch, what to watch. I hadn't been paying attention to what I had set to record so I flipped through different programs and settled on an old episode of No Reservations. I started running as Tony Bourdain made his way through Las Vegas; eating, drinking, smoking and whining, crabbing and talking a mile a minute (gotta love that Tony!) (and while most of the food looked very tasty, the fried Twinkie was very gross). I realized that I was still having some breathing problems but kept the speed at 12 minute miles. After 2 miles I was wheezing so much that I slowed down and walked a half mile. Although I was still huffing and puffing I ran another 1.5 miles, then cooled down with a slow walk.

Know what? I really missed running! I should really try to make a habit of it.

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?

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.

Thursday, July 16, 2009

That running thing

With all the turmoil and bustle and anguish and anxiety, I haven't had time to take care of myself. I've spent every evening after work with my mom, getting home around 9:00 pm-ish. That's too late to even think about any kind of exercise. It takes a couple of hours to unwind enough to go to bed, and even then my brain races along while my body tries to rest. With all the tossing and turning I'm too tired to get up and exercise before work; I'm afraid I'll be so uncoordinated with sleeplessness that I'll hurt myself. My system has keenly felt the lack of activity so this morning I dragged myself out of bed and headed for the treadmill.

Three miles later I was smiling, relaxed, breathing heavily, sweating heavily-er (sorry, I liked that word), ready to face the world. I was tired, but a good tired instead of a beat-up tired. For a short time I was thinking about running, thinking about the amusing program I was watching, thinking about everything except my family issues.

I'd forgotten how good that feels. Hmm. Maybe there is something to all the talk about how exercise is good for you ...

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.

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.

Sunday, July 5, 2009


This blog has been an outlet for me, a catharsis of sorts, where I can say whatever I want and pretend that I'm talking to myself (while other people may or may not listen). The only times I've censored myself were last summer when I was so depressed (and even then I was blabbing on my alternate blog) and about family matters.

I've talked about my sis a lot, once in a while about my bro, but when it comes to my mom I only put in that I've spent mom time. I have such conflicted feelings for my mom that I have trouble expressing them to myself, let alone writing about them.

I'm the youngest of three kids, raised by a young single divorced mother in the days when there weren't many divorced parents. I was always mommy's girl and in some ways still am. But by the time I got to college my mom could never decide whether she wanted to be my friend or my parent and that caused conflict and friction. We developed a very stereotypical mother-daughter relationship of too much love and too much disagreement and too much time together.

My mom has always had a mean side, a caustic tongue, an anger at the world that things weren't working out how she planned. While younger she mostly hid that away because she avoided open conflict; she would just cut you off permanently if you crossed her. As she got older though, that internal filter ceased working. She started yelling, then cursing, then just being cantankerous and grouchy and mean.

She was also charming and funny and clever and intellectual and talented. Little bits of that still peek through, but mostly now she's just unhappy and angry. Her health is suffering, her body is betraying her and she refuses to believe she's slowing down and getting old. While she wants sympathy, she also rejects any offer of help unless it's from me (or from my brother). We don't help her nearly as much as she thinks we should. We'd have to move next door to her and become her personal slaves for her to think we help her enough. But since we won't, she continues to be independent and lives alone.

Last week, for the third time in a couple of months, she had chest pains and went to the hospital. The last time that happened they ran some tests, couldn't find anything wrong except for some gastric problems, and sent her home. This time it was a different medical staff and they decided that it could be serious so they wanted to keep her overnight for observation and more tests in the morning. She didn't like that, but went along with it.

You know how they say that hospitals are the worst place to be if you're sick? It came true this time. If you've been following my tweets you'll know that from the night she got there things have gone wrong. What started as overnight observation turned into over-medicating and discontinuity of care, causing her physical and mental harm.

The sedation is wearing off but it has resulted in confusion. My mom is acting exactly like a habitual drunk in the middle of a three day bender. She is under the impression that she is fine but she also has no strength, no coordination and no rational thought processes. She's agitated, loud, confused and angry. She's yelling and cursing at everyone, thinks she's in jail, can't understand a thing. It doesn't help that she keeps taking out her hearing aids and then can't even hear. She has regained just enough physical mobility to be a danger to herself.

We're told that by tomorrow she'll be better, her mental processes should be nearing what they were when she first got to the hospital and within days it will be like it never happened. We've also been told that she's on the way down the slippery slope of dementia and this same behavior could be her future. She will become physically weaker, more confused and unhappier with life. It probably won't be quick and probably will be drawn out and ugly.

It makes me ache to see my strong, beautiful, talented, funny, independent mother come to this. It's horrifying to think of how long she could be aware of her own decline and how much she'll deny its occurrence. She'll have good days, flashes of her old self. But meanwhile I'm left with knowing that even though she's still here, I've lost my mommy. All that remains to her is habit and instinct. It will have to be enough.