Retaliation

I think that the retaliation has begun. I was told that I have to start signing in every time I enter and leave the building, that I have to take the service elevator. Then, last night the only activity for the night - singing Christian songs - was moved to my mother's floor, so we had to find somewhere else to be for an hour. The director had said before that since he's Jewish, he can understand that Mom wouldn't want to do Christian singing and that it is reasonable to have something else for her to do. Yeah, nice talk schmuck.

Okay, yes, and then tonight, when I went to the med tech to get my mom's sleeping pill, I was told that she couldn't get it until 9:45pm exactly because that's what it says on the order. I said: Aren't you allowed to give medications an hour before or after what the order says? Med tech: Yes, but it says this for your mother very specifically and everywhere. I just can't give it to her now. Me: But if you wait, you'll have to wake her up. Med tech: I have very specific orders on this one.

All of this is just too coincidental. All this since yesterday morning when I spoke with the area manager. I'm supposed to wait until next week to hear back from the area manager, but I don't know if I should wait if its going to be like this. Maybe I'll give it one more day?

Conversation With the Area Manager

I got an email (strangely to my university email address - I've been emailing the executive director of the facility from my personal account) from the area manager inviting me to call her. I had left a message on the number that I was given for her. Anyway, she said she needs to tell the dir. that her cell phone number is what should be given out.

Anyway, I don't even know what to say about the whole thing. We talked for awhile - she didn't say too much other than that she'd talk to the dir. and call me next week. She did say that the number of staffing is standard for a Sunrise facility, and she claims that they're staffing at higher levels than their competetors. She said that the they just need to make sure that the staff is trained, and that the staffing could increase as the level of care needs of the residents increases. She also said that there's a new area programming manager that came by the facility to help. She said that we should see 6 activities every day (Andy said 5), but that there won't be constant activities.

She said: "I want to be honest; there will be downtime." I pushed her to tell me how much is reasonable - and she said 1 hour in the evening. She said that this is fine though because people like wandering around. I said: For my mom, wandering for 10-20 minutes can be comforting but for 1-2 hours it is very distressing. I suggested that they put on one of the movies that I brought for her at least, and she agreed that this should be done.

I don't know what to think. She basically pointed out that this is as good as it gets, but that she'll work to improve the conditions somewhat because what I'm asking for is completely reasonable.

The Neglect of People With Alzheimer's: A Summary of My Life Over the Last 5 Months & Call to Action

Over the last few months having the experience of moving my mother to one of the supposed finest assisted living units for Alzheimer's in the area and from reading blogs of other caretakers (many of whom you can find in my blogroll), I am shocked at the extent to which people with Alzheimer's are neglected by society, by the state, and by facilities where they are placed.

My mother's facility started out great. They told us everything that we might want to hear and took very good care of Mom. But, as the facility increased the number of residents without significantly increasing their staffing, my mother has been more and more neglected. We were concerned that this would happen because Mom has a hard time speaking up for herself, but it seems as if neglecting my mother is the facility's plan. And not just my mother. The more that residents progress in their disease, the more they are isolated until they eventually end up staying in their room for all or most of the day with little human interaction.

I was hoping that Mom's facility was a unique problem and that by bringing attention to the problems to others, that things would be fixed. BUT, it seems as if this is a common problem, an expected problem. We are not setting aside the resources to take care of people with Alzheimer's, an enormous and growing epidemic in our country. The outcome: neglecting people with Alzheimer's is the norm.

Part of the problem is that caretakers are intimidated by these facilities because there often aren't good options, and we fear that complaining will lead to retribution against our loved ones. But, we cannot give into this intimidation.

Part of the problem is that there are ridiculous few regulations on assisted living facilities. We need to lobby states to start taking more responsibility for what goes on in these places.

Part of the problem is that so many of us are silent - we're too busy and we don't want to think about it and we are embarrassed what people might think of us if they knew what was happening to our loved ones. But, we cannot remain silent. We must speak out: THIS IS UNACCEPTABLE!

Email from the Exec. Dir. of Mom's Facility

Thank you for the time to review your concerns and to continue to build a program for your mom. I apologize if it appears thing have returned to "normal".

The scheduled activities are posted daily and [the floor coordinator] is adding the approximate start times. By creating a time frame with scheduling we can raise accountability and make it easier to family members to plan their visit to observe, participate or avoid contact during these times. You will continue to see a schedule of 5 or more activities a day with content mix spanning from physical to sensory, reminiscing to role play and life skill to solace.

Activities range from 5 minutes to 1 hour based on the content and audience Most are 30-45 minutes. Life skill centers, reminiscence kits, lap baskets and snoezelen room are "always available" engagement items that family members find enjoyable to use during visits. The Life Skill Centers are as follows: Vanity and dressing, workbench, office desk and home kitchen. Sensory and tactile items such as Snoezelen Room and Wall sensory portraits are equally enjoyable for short or long term experiences. Reminiscence kits explore cognitive dimensions deeper due to the recall and story telling aspect. Lap baskets are more tactile and sensory dealing with grouping, sorting, fine and gross motor skill. Story telling can also be a part of Lap basket use. Day ending activity is typically scheduled to commence at around 6:30 to 7:00 PM, lasting up to 45 minutes.

Our program dedicated medication administration team members are here through 11:00 PM 7 days a week. On isolated occasions when an AL or REM med passer in a particular neighborhood is not available the alternate med passer is available. This was the case for med passer leaving at 9:00 PM. From 11:00 PM to 6:00 AM one team member is credentialed to pass an as needed medication if necessary. Otherwise our selection of nurses are on call during the night shift.

The dryer has been addressed and no mold has been found in the laundry that was processed from being held in bags prior to being placed in the dryer.

In the evening when residents are getting ready for bed and the care managers are assisting residents there may be periods when there is not a team member in common areas of the neighborhood. There may be periods of wandering and exploration, which is for most intents and purposes ok. Most of the residents residing in the Reminiscence Neighborhood will engage in conversation with anyone for any reason, which may or may not accurately or specifically express their needs at the time.

I assure you there has not been a reduction care managers or medication passers serving the needs of the residents in Reminiscence.

I appreciate the detail you have provided. This makes addressing your understanding and concerns easier. I look forward to the continued dialog as this process evolves.

Respectfully,

Migraines and Roller Coasters

The hangover turned into a migraine, but luckily not too bad of one. I've been taking Feverfew and Petadolex since my last migraine, and I think that's helping. I think that other contributing factors to the migraine are: hormonal/relating to my cycle and clearly stress.

Last night, things were a lot better at Mom's. I had emailed the executive director, and he emailed me back this long email, which doesn't even totally make sense to me in parts. He makes completely different promises about activities for Mom. Things are either fabulous or horrible there. This whole thing is just such a roller coaster!

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This Tears Me Apart

Last night, I went through all of the neglectful things that I saw at Mom's. He didn't seem to want to hear it. And, then I came upstairs and started drinking and drank way too much. I actually have a bit of a hangover now. And, I have this big conference call for work later today. Oy.

This whole process of just trying to keep my mom safe and minimizing her suffering, attempting to give her a little joy at this end stage of her life, fighting with her facility and my dad and my whole family - this all just really tears me apart.

It is really hard to decompress after being at Mom's place when things are bad. I didn't leave there yesterday until about 10pm, and then somehow I'm supposed to just come home and go to bed. Sometimes, I meet my friend Kathy for a drink somewhere and that helps. I used to go work out late at night, which helped but then became hard to sleep afterwards still. I just wish that I could go ahead and make things better for Mom instead of trying to cope with how horrible things are.

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Options, Options, Options: I Don't Give Up

So, I have been thinking about what my dad said to me the other day, that we shouldn't make too many waves because we don't have any other options of places to bring her. So, today I called over to another Sunrise facility that is actually closer to where my dad lives, and I met with the executive director who is FABULOUS (i hope).

She has a background in nursing home and assisted living care and a degree in social work. And they're hiring a full time activities director and a full time activities assistant. And, she said that people get activities at every stage of the disease, not like at Mom's facility, where activities are only geared for half of the residents. She also said that she's going to try to make her facility the best of the Sunrise facilities in the area and that she is trying to hire the best people in the business who she's met over the last many years in her experience. Mom's current floor coordinator comes from a background doing admitting in a hospital.

I talked to Dad about it, which I was very nervous about, and he seemed somewhat open to the idea, although I could tell very nervous. It would cost about an extra $10,000/year it looks like, but I don't think that he's going to really make that the issue. And, I've decided if he is, I'll offer to chip in.

All Just for Show: The Director's Lies

Apparently whatever the Executive Director said in the meeting, he had no intention of following up with. He's a salesman and that's all that meeting was, I think. The first night, things were a bit better. But, last night things were actually worse than normal; the med tech's hours have been cut too - so there isn't anyone on Mom's floor to give her the sleeping pill. My dad is worried about rocking the boat now because he says that there isn't a good alternative place to bring her.

I'm going to keep plugging away though. I documented everything and sent an email to the director also trying to confirm what he said in the meeting.

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Hurricane Katrina History

Check out this link if you are interested in better understanding the governmental response to Hurricane Katrina.

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Victory is Mine!

The meeting went so incredibly well yesterday. The director of the facility changed his tune entirely; I think in part because there was serious follow-up from the person at corporate that I touched base with. There were two people at the facility on Mom's floor from corporate who work in the area of activities, just randomly around the same time as our meeting. The floor coordinator told me that they had spoken about how to make activities that are appropriate for Mom's interests and level. (Yea!)

The director promised us that Mom will start getting 2-4 activities in the morning, 2-4 in the afternoon, and 1-3 in the evening - each 15-20 minutes long. She'll also start getting her care plan implemented, which we updated a bit as well. The director said we should start seeing things get better almost immediately.

And I went up there last night, and there was an activity going on - the first time in a long time that I've seen this - with 15 people participating, and it went on until about 8:30pm. Of course, the staff left after about 15 minutes and family members led it, but it is still a big improvement. Oh, and there were staff around the whole time, so when I needed something (they didn't give my mom clean towels, they just took her dirty ones), there was someone to ask.

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Big Steps

I called the Director and used the word "neglect" which got his attention really fast. He said that if I have a problem, maybe the right thing is to move my mother. I said "Andy, that sounds like a threat." I know that this is against the law and went to www.kansas.gov and found it online, printed it out, and showed it to my dad.

I got in touch with the state ombudsman who gave me advice and suggested that I talk with Andy, then the people at Sunrise Corporate, and then come back to him if there is still a problem. But, he said that I have legitimate concerns that Sunrise should be willing to correct on a pretty quick basis. He suggested that I focus my argument on Mom, not everyone. He said that it isn't okay that Sunrise has accepted so many patients that would be better placed in a nursing home. He also said that they legally have to provide "sufficient staff" and enough to evacuate people in 5 minutes. So, I printed out a bunch of the laws and put together a memo stating that there aren't enough staff or activities and that this constitutes neglect (although I didn't use the word - I used the state's definition of neglect in quotation marks.

My dad is avoiding me, and I can tell doesn't agree with how I am handling things. But, he's coming to the meeting tomorrow. I am really anxious about how all of this is going to go. I called my therapist who suggested that I touch base with Dad's best friend (I left her a message) and is letting me come see her after the meeting tomorrow even though she does not ususally schedule appointments then. There's a lot on the line right now.

The Boiling Point

As I've thought about what went on yestersday, I realize that I got sucked into to making the meeting not enough about my mom in an avoidance on my dad's part to want to get charged more money. And it isn't that he doesn't have the money to pay for it - that's not his concern. He's just pathalogically cheap.

And I'm struggling with both Mom's facility and Dad to get Mom better care, but I'm paying way too much attention I think as to what both of them want/need and not enough to what both I and Mom needs. So, I left a message yesterday with the state Ombudsman, who immediately called me back. And last night, I was just so upset about all of this that I didn't come home until he had gone to bed. And then I binged ate a bit and drank a couple of drinks, abusing my poor tummy (especially since I ate crappy food yesterday).

Then this morning, as I go to put the copy of Mom's service agreement that I got Dad to show me yesterday (and I copied it), I see another part of the agreement that he didn't show me which has lists of possible additional services to purchase and a grievance procedure. I'm so angry right now - why can't we just purchase more services for Mom? And now I'm way jumping ahead in the procedure of having a grievance, and I have three people to contact before I should even get to the ombudsman. And why couldn't I just have this earlier? Why am I calling every agency I can find to try to get help and calling around all over town to find volunteers to do stuff for my Mom when there are easy procedures to go through with all of this.

So now I guess I'm going to blow off the ombudsman for a couple of days and try to call these other people. I might also just call the director of Mom's facility and ask him to put together a plan to increase Mom's fees to provide her with the care that she needs. But, then I'm way going behind my Dad's back and disregarding that still there aren't enough staff there and NO one on Mom's floor is getting decent care.

It is hard enough that I'm losing my mother to Alzheimer's. Why are so many people making it harder???????? Oy!

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The Meeting

I don't even know how to begin how to describe what happened. My dad ended up showing up at the minute because there was some problem with my sis' inspection. As we met, I could see my mother outside the room (there were curtains though on the doors so she couldn't see us) pacing around with boredom.

Basically, it was as I pictured it would be - the floor coordinator didn't say much. She admitted a couple of problems - offering to try to fix some and saying that some others are just the way they. For example, the staff number is just going to be what it is. She claims that there are 5 people working on the floor 7am-11pm, which is just outrightly untrue, and I pointed it out that this isn't what I see. She admitted that well one of these is the med tech, who she claims helps out with other stuff when they finish with the meds BUT they don't have time to help out. [Lie #1] She also admitted that there's a problem with the evening shift because most of the people who apply for the job are students and there's a high turnover - - - - WELL maybe if they'd pay better, then they'd get better people.

I understand that to some degree that her hands are tied on a lot of this, but I just feel so frustrated. I found out from Mom's neighbor's son that the director of Mom's facility is going to be promoted to area supervisor.

So, I made some phone calls: The Alzheimer's Association referred me to the KS Advocates for Better Care who referred me to the state ombudsman for long term facilities. I left him a message and did the initial paperwork, but the intake person told me that this needs to get referred to the KS Deptarment of Aging. But filing a report with them means that the facility will know that I filed it and the facility will get in trouble. I'm worried that they'll retaliate against my mom, even though the intake person told me that this is against federal law and that they can be shut down if they do that. BUT, what's to ensure that the law will be enforced?

I spoke with my dad about hiring a "companion" type person through Jewish Family and Children Services to just go be with Mom and maybe put her to bed at night. I think I'm going to have to just pay for it, and screw it, you know, I know that I'll inherit the money back from Mom. Why should I fight with Dad about him paying for it when its the same money that I'll be inheriting anyway...or I'll inherit it when my grandmother dies. I figured out that if I pay for someone to come every night for 2 hours, its only about $1000/month, and if this is just supposedly going on for another year. If for $10-20,000, my mom can get some better care, then screw it. Its so ridiculous though. My dad has plenty of money, okay, like a LOT, and he starts giving me this spiel about how he can't spend money now because after Grandma dies, that my aunt might have set up her will so that he'll have to pay a bunch of estate tax, and he has no idea how much, so he better just be prepared. It makes no sense to me; what people can pay more tax then they inherit? I don't quite believe this.

RENT!

I saw "Rent" last night at Starlight Theatre, and it was fabulous! This is the ultimate JewBu movie: "There's only us" = a message to live in the present. "Measure in love" = living and loving is more important than material wealth or anything else. I'm clearly a Renthead. But, how relevant is in this situation???- - Don't fear, don't give into disease, just find ways to love the people around you and enjoy the moment; that's the message.

Anyway, I'm curious though why the 15 minute intermission was 30 minutes. Anyone know the scoop?

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My Sister

So I've had this meeting with the floor coordinator planned for days and days, and my sister calls my dad today and tells him to go meet the inspector for her new house, when? Yup, the same time as this meeting. So, he's not coming. And now I won't have any authority tomorrow, and I doubt much will get accomplished. I had told my sister about the meeting too, I even called her to remind her that Dad wouldn't be able to do it tomorrow afternoon, but apparently she doesn't care. I should call her and tell her that if Mom's not going to get better care because of this, she should pay for someone else to come in!

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Is This Normal Or Is This Neglect?

Okay, so for you other caretakers out there or anyone else who might know, here's a question for you: Is what's going on at my mother's place normal or could it be considered neglect? Dad and I are meeting with the coordinator of Mom's floor tomorrow, and I'm trying to get prepared. It seems like there aren't enough staff and that no one is being properly cared for - but how much staff should they have? Aren't there any standards?

I called Kansas Adult Protective Services today, who sent me to the KS Dept. of Aging, who sent me to SRS (don't even know who they are) who sent me back to Adult Protective Services. Basically, everyone said that I can file a report and they'll investigate it, but that neglect is subjective and they just can't tell me anything. BS! I saw online a KS definition of neglect, which was very vague. I'm worried that if I file a report, that they'll take it out on my mom.

Does anyone have any experience with this?

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Got Bubbe's Pot

Well, after organzing brunch with Mom, her sister, and her cousin - which Mom just loved - my aunt invited me to go to Grandma's this afternoon and take a couple of things. (My grandmother is in a nursing home.) It was weird to be rifling through her stuff, but I'm glad that I got the pictures, one of my great-Grandmother's pots, and this beautiful painting made by my grandmother's brother's 3rd wife's aunt (did you catch all that?) who supposedly is a well-known Polish painter. I got lucky that my cousin was at my grandma's, so I didn't have to go through it on my own. The whole thing was pretty strange, but I'm glad that we got to do it together. And, my aunt said that the important stuff she'll store in the basement, so at least now I know that not all of their stuff is being given to charity. And, she's keeping some. And my sister is taking this enormous painting and my cousin this enormous statue - so there will be a little bit of my grandparents with everyone.

MEME - A Few Fun Questions

Alright, so the purple parrot has tagged me to answer some questions. Here they are:

1. One book that changed your life?
"Against Our Will" by Susan Brownmiller

2. One book you have read more than once?
I'm a grad student, so this isn't a hard one. How about "Transforming a Rape Culture" by Emilie Buchwald, Pamela Fletcher, and Martha Roth (Eds.)

3. One book you would want on a desert island?
A blank book to keep as a journal.

4. One book that made you laugh?
"I'd Rather Laugh" by Linda Richman....yes, the woman that Mike Meyers based his Saturday Night Live character. It is also very sad and applies to #5.

5. One book that made you cry?

"Everything is Illuminated" by Jonathan Safran Foer

6. One book you wish had been written?
My thesis. Um, my dissertation. I'm getting there.

7. One book you wish had never been written?
As much as some books are filled with hate and ignorance, I think that we learn even from mistakes when they are written.

8. One book you are currently reading?
"Dance of Fear" by Harriet Lerner.

9. One book you've been meaning to read?
Well, clearly I need to be reading more fiction. Any recommendations? I especially need a book with me to take on the plane ride back home.

10. Now tag 5 people:
I'm not much of a tagger, but if you want to do this, feel free to give the URL your blog on the comments of this post OR if you don't have a blog, you can give your answers there.

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Taking What I Need: A Wild Night

So there's something about taking care of people who are dying that can drain the life out of you. It is kind of a heavy feeling. And just from the way that I've been treated by men lately, I've really been desiring just having a wild night (pause to daydream about last night). Okay, so I've been hanging out a bit with this bartender yadada, anyway, I live with my Dad and he lives with his son, so we can't be alone anywhere, so when I told me that he had to get a hotel that night, I decided to use it as an opportunity to reclaim my sexuality. I normally don't do this sort of thing, but it just made me feel really alive and desirable and in touch with another human being around something other than suffering.

One of my mom's neighbors has been having some health problems and been in and out of the hospital, so I brought mom by to visit the neighbor and her son. Anyway, the son is kinda losing it; he's trying to hold onto everyone seeing things as he sees it. By this, I mean that he constantly was correcting his and my mother. He had told me that he doesn't want to lie, and so he's going to hold on to his version of reality as much as possible. And he sent away his sisters because he didn't like the way that they were doing things.

So, the lesson for me of all of this is that I need to take care of myself if I am going to be much use to my mom. And, if there are things out there that I feel a big withdrawl from, I can go out and find ways to try to fill this. Yea me.

The Struggle Continues

I'm sitting in Mom's office just feeling really anxious. I need to sit down with my dad and clarify his position about spending money on stuff for my mom, which will likely lead to a fight and so maybe I shouldn't bother and wait to see what happens at our meeting Tuesday.

And, I didn't go to my grandmother's this morning (my aunt left a message that she was going to be over there then)
to rifle through and figure out what I want of my grandmother's. But, now that's probably my last chance to have something from her to remember her OR to get something for my mom. But, whatever.

And I'm grateful that my friend Kathy pushed me to talk to her about this. I feel better after naming it. And now writing it here. I am reminded of Jewel's song "Breathe".

And I've got a date tonight with a guy with whom I don't see anything long term happening, but I enjoy hanging out with, even though I'd honestly be embarrassed to introduce him to many of my friends, which is horrible. I'm trying to challenge my internalized classism. And he's so charming, and just appreciates me in ways are way neglected. Yeah, I'm being a total guy with him.

I finally made plans to go back home on Sept. 24. I feel releaved to have this arranged, but also horrible that I'll be leaving Mom.

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Plugging Away at Making Mom's Life Better

I made an appointment for my dad and I to meet with the floor coordinator on Tuesday at 2pm. I also left a message (yesterday) for the family coordinator at the Alzheimer's Association (although I'm annoyed that I haven't heard back from her).

Then, I went this morning to visit my mom since I got ropped into going with my father tonight to this horrible formal not-my-style military ball. And my dad isn't visiting Mom today or yesterday at all since he's helping out his friend with a garage sale. So, I spoke with Mom's care manager who said that she'll get me the phone number of the massage therapist who comes to give treatments to another person on the floor. (I asked the floor coordinator for this weeks ago, but she told me that bascially she couldn't be bothered.)

And, I ran into the notorious activities director. She spoke with me for awhile, even though honestly I just had such anger for this woman for letting things go so badly with Mom that I didn't want to talk with her. But, I tried to be a Jewbu and have compassion for her. So, she told me that they let the part time activities director go, who only worked for 16 hours a week anyway. That person was doing mostly stuff on my mom's floor.

She told me that because of my and this Jewish organization's efforts, someone is coming once a month to do a Shabbat service with my mom and the other Jewish residents. I need to find a way to contact her (the activities director like can't even be bothered to get it for me). Anyway, I'm really excited about this.

And, then she told me that her grandmother died, and she's going to a funeral next week. And, she had tears in her eyes; I almost hugged her. The whole conversation was very odd. Clearly, she inferred that she saw the list that I gave to the floor coordinator. I can't even begin to describe how frustrated it makes me that no one was planning on responding to me, but they all clearly talked about it.

But, she told me that she's looking for volunteers and appreciates my efforts, and it was nice to just be in the conversation for once. I made a bunch more calls to get stuff set up for mom. Of course, I've done hardly any work today. And, I've emailed people to maybe go and play Jewish music at Mom's facility. It seems like my efforts are paying off, if only in little increments; its nice to know that I'm making a difference.

Sub-Iraqian Homesick Blues

Probably will only be appreciated by those who are Leftist and/or critical of the war in Iraq: Go to this site for an extremely clever and musically valid version of Dylan's Subterranean Homesick Blues, with lyrics that are a wonderful and humorous commentary on the Bush Administration:

http://-paulhipp-.cf.huffingtonpost.com/SUBIRAQIAN%20HOMESICK%20BLUES%204.html

Spoke With the Director of Mom's Facility

I ran into the director of Mom's facility tonight when I went over to visit her. He confused me for my sister, asking me about my daughter. Anyway, I nonchaulantly brought up the issues of my mom's (lack of) care, and he said that the floor coordinator shared with him the list that I gave her.

He basically gave me this bs run around about how my mom is at the basic level of care, which means that she gets a 2-3 hours per day of one on one time including meal times and doing her laundry. Other than that, if she wants to do an activity - great - otherwise, she's on her own unless we pay more. (He said this of course much more diplomatically.) Then, he has the chutzpah to ask me if I've gone to their support group....like the problem is that my mom having Alzheimer's is hard for me and not that their skimping on the staff.

I came home tonight expecting to fight with my dad, but I kind of let it go because I got him to at least agree to meet with the floor coordinator to go over what she is supposed to be getting. But, he said that he doesn't want to talk about personalized care with them, or anything like it, because he doesn't want to pay anymore than he already is.

Now, I understand wanting her to get what she's supposed to be paying. But, I have so much anger bottled up inside of me right now....my parents have a LOT of money. Mom has a LOT LOT LOT of money in her name, that's just her money, given to her by her parents. There is NO reason not to spend Mom's money on Mom's care other than my father's stubborness. AUUUGGGGGGGGGGGGGHHHHHHHHHHHH.

And, I'm still getting over this migraine, so I shouldn't be drinking. I seriously will fight this with my dad if I need to BUT I'm trying to get whatever I can get done without fighting, to chip away at the problem. I promise tonight both to myself and to my mother, that if its around the time that I'm going to leave and this is still going on - I will fight with him if necessary and with the administrators' at Mom's to get her the care that she needs.

Connections and Disconnections

I just got a phone call from an old acquaintance (who is Jewish) from a writing group that I used to belong to. She and a mutal friend of ours (who is Muslim) have spent years working on uniting the two communities. After the war started, I contacted them to try to help organize some sort of event - something to bring the community together to make some sort of statement that seeing civilians die on both sides hurts our humanity and raising money for relief organizations. Anyway, well so they've been sort of oddly blowing me off, so my Jewish friend called me tonight to explain.

She said that the Muslim friend had gone to the press twice making statements against Israel, and now they're friendship has fallen apart. What a horrible shame. I can't even explain it all without giving out enough details for you to figure out who they are - and I don't have the right to do that, so....

Anyway, I told her about what's been going on with me and just saying it makes me want to cry. She encouraged me to just plan something with the Muslim friend or someone else, but that seems ridiculous since the war is now just about over and I don't even have time for that sort of thing.

I went back to the conference today. I heard Dr. Ruth speak which made me smile. Then, I heard like minded people speak and ran into someone from my panel yesterday who said that she was appauled also by what was said yesterday to me and that I handled it well. This all made me feel a lot better.

I had thought about maybe going to a drag show tonight, but I am just completely drained. I'm waking up at 5:30am to go to the airport. So, I'm just going to continue being really kind with myself and take it easy and just stay with what I feel like doing in the moment.

Should We Videotape Rape?

Yes, it is a ridiculous question. But someone suggested it today after my talk. Another guy on the panel was analyzing video tapes of genocide, and it gave this other guy - some big wig in my field apparently - the idea that maybe we should video tape rape and then study it from an interactional perspective. Augghhhh grosss hebbes and jeebbes. And the genocide talk guy made some comment about Jews and Nazis and was talking about weak victims....and I am just so offended and creeped out by this all. Not to mention that there were only 10 people there, and the project didn't work for my presentation but then did for the others....It was just a hard morning. Plus, I forgot to take my anti-depressant this morning. And, I had added on a supplement 5-HTP (which is also a bit of an anti-depressant), so even though I took them just now, I'm still feeling majorly depressed.

On a good note, I did sleep very well last night since it was quiet and the bed didn't have enormous sags. Plus, I was friendly and had a long lunch with a couple of people which was nice. But, now I just am enjoying being alone in the hotel. I'm not quite sure waht to do with myself for the rest of the time here. I'll probably go back to the conference, venture out a bit by myself, do some work here, and maybe meet up with those people again....but geez, I really need a proper vacation at this point....somewhere probably where I don't have to fly to get there and no one will make offensive comments.

Flying to Montreal Tomorrow

I'm traveling tomorrow to Montreal for the conference. What a nightmarish time to go. I found this link to an NPR story which lists new rules for traveling by air: http://www.npr.org/templates/story/story.php?storyId=5635078 in case anyone else is traveling. It seems like a mess, so I'm going to pack my laptop and just about everything I guess. It makes me nervous to fly, but I'm going to do it anyway because making this presentation is really important to me. I just about have it done too.

Link

Ah Familiar Unhealthy Family Dynamics

So, I called my aunt yesterday while waiting to pick up my sister and her family from the airport. My aunt was surprisingly civil, and we talked about stuff. In thinking about whether or not to call her though, I realized that I do harbor some anger and animosity towards her because growing up, I always understood our relationship as such that she was this really important figure in my life who would always be there for me, and now she seems to care so little about me, having several times really taken advantage of me.

Then, my sister had asked me to babysit this morning, and she drops off my niece at 9am for what she said would be 2 hours (an excuse I guess just not to give me her booster seat so I could take her out - like to my mom's), but ended up being closer to ALL DAY. They finally show up around 3:30pm because Grandma's car broke down somewhere close by, and my brother in law is yelling and being obnoxious, and no one is telling me what's going on.

Finally, we all go out to dinner at 5:30 (because my dad offers to take us). Who ends up being at the table next to us, but my aunt. Yes, the same aunt. And she and my dad don't speak to each other at all. It was lovely really.

So, I'm drinking a little bit; I admit. At some point, Dad says, how unlucky that we end up coming out and she's here. I say: Well, at least you could be civil to each other. If I can put up with this guy over here(I look at my brother in law), you should be able to do it with her. Apparently, my sister indicated later, he heard me and is insulted.

So do I have to apologize? Or that he is a border line verbally abusive guy in front of me, does that excuse my comment?

Unbelievable: My Aunt Blames Me!

I called my aunt today, at my sister's request, to arrange to pick up my grandmother's car so that sis can drive it while she's in town and I can pick her up at the airport. So, my aunt goes off on me for not calling her and somehow blaming me that things went bad when I took Mom to Grandma's. I called my cousin (my aunt's son) to get advice on how to smooth things over and he warned me that my aunt blames me for my father not putting my mom on medication for Alzheimer's. OY! Like it isn't bad as it is, she has to make this more complicated. Whatever. I'm done with her. Luckily, my cousin seems okay about maintaining contact with me even if things are bad between me and his mom.

And, to make me feel even worse, my cousin told me that my grandmother is worse than when I saw her last. She's often in a paranoid psycosis, he claims. And my aunt seems to be dragging her feet on getting services to Grandma and some of the staff at her facility aren't so fabulous. So, isn't that just wonderful. He said he is trying to get Grandma some hospice care, thankfully. It just makes me so sad that she is suffering so much.

Technical Question: Using Photographs From Other Sites

Okay, here's a question for all you other bloggers out there. I have been using pictures from other sites and had selected for them to link back to their original websites, but it seems that this isn't working. Is it appropriate to be using photographs from other websites? What is the best way to attribute them to that website (and how important is this)?

Get By With A Little Help From My Friends Part II

Big thanks to my best friend out in KC, Kathy, who treated me to an afternoon at the spa yesterday. It made me so relaxed, I felt drunk. She comes out many nights after I tuck my mom into bed to keep my company and cheer me up. She's always there for me, and it makes everything out here so much easier. I admitted to her yesterday that I've sort of blown off all of my friends out here in KC except for her, very much because they tend to just pity me and bring me down.

I also have gotten a bunch of calls and emails recently from friends all over, and it just kind of warms my spirit and renews my energy to know that I'm supported. I know that I can always call *A* as well, anytime, and he'll cheer me up. If anyone out there has a friend who is a caregiver or who is going through a rough time, let this be a lesson to - don't pity them; go and be there for them, support them.

The Spiritual Path to Healthy Relationships

I had a therapy session today where we talked mostly about relationships, namely of the romantic type, where I gained a lot of insight into this pattern that I have of being attracted to people who I think it can't work out with and putting too much pressure onto relationships where maybe it could.

Anyway, so I have discovered that creating healthy relationships is going to be a spiritual path. It will be a path of taking things one step at a time and not looking too forward into the future. It will be a path of putting up some boundaries with *A* and starting to redefine the relationship based on my terms (I know, many of you have told me in the past, but for some reason when my therapist said it, it just clicked as something possible - maybe it is because *A* and I are in different states). It will be a path of not thinking that I have to make a bunch of sacrifices to make the relationship work. It will be a path taken with much more self-esteem, where I don't fear that someone will discover flaws in me and run.

Can I actually follow this path? Thinking about it in Buddhist terms helps, by making it a spiritual path: I won't do it perfectly, but every day I will aspire to be on the path. If I mess up, I'll try again the next day. Well, this is the theory anyway.

A Really Good Night: So This Is What It Feels Like

I had a great night last night. Well, I guess a good day all around. I had lunch with a good friend, went to therapy, from therapy to acupunture. I had dinner at Dad's place by myself, which was a gift to just have some time alone with my dog. Then, I went to my mom's, and mom was doing really well. The people are making much more of an effort, and it was clear that it made a difference for her. She was much calmer and better functioning.

After I tucked her into bed, even though it was raining, I met this guy (for the second time) who I met online at match.com, where I put up a profile a little while ago just as a distraction. We met at the Westport Coffee House, and it felt really good to get out of the burbs. I just had a really nice time, and even though there was chemistry, he didn't make a move, and it just made me feel really respected and I don't know. We talked for awhile about spirituality and things that are meaningful and deep but not too heavy and depressing. I even managed to stop myself from talking too much about my research or even mentioning that I'm a survivor.

When I came back, I didn't even really want to eat or drink anything, I just went to sleep. I didn't even turn on the television. And because I was so relaxed last night, I slept great, and feel so much better today.

This makes me realize that getting through all of this sanely is a spiritual practice of delving into really horrific things but keeping my life balanced with work and friends and taking care of myself and just having fun every once in awhile. I think because I was more relaxed, my mom was more relaxed also. At the support group meeting last night, someone noted that when caregivers start taking anti-depressants, they say that the person that they're caring for's condition improves....because clearly they respond to how we're doing. So, I should think about taking care of myself as also taking care of my mom.

Disconcerting Things that I've Seen at Mom's Facility

I'm bringing this list to the facility or having my dad do it with me. I had a really bad night last night and am very frustrated with the care that Mom's getting. I went to a support group at the Alzheimer's Association and several made it clear that this is not okay, especially for the most expensive place in town.

1. In the last two weeks that I’ve been in town, my mother has been in her room by herself every time except for once. I have rarely seen her doing an activity during this time unless I organize it myself.
2. When I arrive between 7-8pm, there is generally not an activity going on, nor is one started again. Most residents are in their rooms, often coming out in their pajamas or standing in their doorways looking out to see if anything is going on. This is too early to be asleep.
3. Last night (8-1-06) the activity for the night was “movie night”. This was the third movie night this week. It was the second movie night featuring the movie “Walk the Line” since Sunday. Sunday, the care managers told me that Paula had given them this movie to show, but that the residents clearly were not interested in it – it is too long and too plot focused for them to follow.
4. Many of the “activities” for the residents of the third floor take little staff effort and provide little stimulation for the residents – movie nights, “socials” which just involve sitting while eating where staff don’t help residents converse with one another so residents basically just sit and eat, etc.
5. It is common for scheduled activities to just not happen. I have seen residents sitting around asking to do activities, but staff to busy to put them on. I have also seen scheduled events taking place where 3^rd floor residents are supposed to come, but staff don’t get around to getting them there. Also, often when activities do take place, only the residents who are there take place; no one goes to get residents from their rooms.
6. Some of the activities are outdated and especially not relevant for someone the age of my mother: trivia book with questions from the 1930s and 1940s, song book for the unit. Trivia and songs could be put together that everyone would be familiar with, but no one has bothered to do this. I even brought in a set of trivia questions that are more relevant, but it is not used. I thought about putting together a song book with songs that everyone would know, but what’s the point if it won’t be used? Besides, making the activities relevant for your residents is something that Sunrise should be able to do.
7. Only one activity goes on at the floor at one time, which worked when there were fewer residents, but this causes several issues with the larger occupancy. People like my mom who are shy are less likely to participate. Since there is often one staff person putting on the activity, residents get very little attention. Some people who are louder about their needs tend to take up all of the attention/focus while people like my mom who are very quiet, get little-no attention. Some activities, like cookie baking, involve watching one or two people doings something, but not actually having anything to do for most residents. I suggested an alternative of cookie cake making (decorating cookies with icing and sprinkles) so that more residents could participate. I organized doing this activity on my own several times, and it has gone over very well, but despite my recommendations to both care managers and Paula, watching a care manager make cookies (which involves a lot of effort on the part of the care manager to find ingredients which often aren’t on the floor and watch the toaster over). I and other family members of residents have brought in games, music, and videos to try to counter this, but little to no effort has been made to utilize these. (There could be more than one movie shown at a time; often televisions are off. There is music residents could listen to and sing a long to, but there is no where to listen to it. There are games and puzzles, but these are put away in order to have space for other things.)
8. I spoke with care managers about washing my mom’s face at night before she goes to bed and was told that they would do so, but when I returned after 1 month, the products were untouched.
9. Since there are so many activities, especially on Sundays, based around being Christian, I organized on my own for someone from the Jewish community to organize something for my mother. I was told that Paula was impossible to get a hold of and did not return phone calls. Having the only option for stimulation be Christian praying and no opportunities for her to connect to anything Jewish makes my mom feel alienated.
10. Calendars of activities are either not put up in my mom’s room or put up (weeks) after the beginning of the month. This is disorienting.
11. Neither her towels or sheets would have been washed this week if I hadn’t pointed it out to staff.

SUMMARY: My mother appears to be largely ignored by staff in the evenings. She is under-stimulated and bored which leads to behavior issues (putting soap on her face causing a bad rash, changing her clothes multiple times during the day and putting on dirty clothes from her hamper and shoes on the wrong feet, turning off the air conditioning which causes the temperature in her room to be well over 80 degrees, and who knows what else, taking items out of her trash can and reusing them). There seems to be little attention to making activities that fit for my mom (both in terms of interest and level). These issues appear to be caused in part due to not having enough trained staff during the afternoon/evening shifts.

*There are numerous other incidents where there have unsafe situations caused by not enough staff (taking 10 minutes to respond when “emergency” cord pulled, people getting on elevator and no staff around to help, staff not being able to find a resident, etc.). One night, I found my mom in bed in her pajamas around 7pm trying to convince a male resident to leave her room. The door in her room was shut, and there were no staff to be found.