Lies and BS at Mom's Assisted Living

So when we met with the director of Mom's facility a couple of days ago, she confirmed that Mom's supposed to be put to bed at 9:45pm. So, when I came back from St Louis tonight, I decided to stop and see Mom, check on how things were going on her floor, and tuck her into bed. I went upstairs at 8:20pm, and Mom was out cold in her bed.

There were 3-4 care managers sitting in the kitchen talking, while one ate. I asked for Duncan, the lead care manager, and was told that he was busy but that I should talk with Mom's care manager instead. But, everyone around the table got involved with the conversation, including Duncan, who eventually came around.

They told me that Mom goes to bed every night around this time. They seemed annoyed that I was even questioning it, and one care manager got really apparently annoyed and angry with. She said that my family should come to the support groups and learn more about the disease and that my dad asks all of the staff about Mom but needs to only ask the staff assigned to her because the others won't know. The worst was that she made ALL of these excuses for the things that go on on the floor - why Mom's been without a pad on, why she's alone in other people's rooms, why she's still putting soap on her face. But, hey apparently we're supposed to be happy because she's locked in and isn't wandering the streets.

I'm pretty upset right now. Dad and I talked about what happened, and he's upset too. I very much want to go and talk with the director of the facility once before I leave, but I honestly don't have faith that things will necessarily get better.

Dad and I talked briefly tonight about maybe eventually moving Mom into a nursing home. They are better regulated, and she's getting close to needing those kinds of services. Dad wants to take her to this place where my great aunt was at. I want to take her to the Jewish home's Alzheimer's unit where my grandmother was. There's a HUGE waiting list that can wait for years, but I want to make an effort to at least convince Dad that it isn't so bad there (despite problems in other units) and get Mom on the waiting list.

Little Steps

Mom recognized me today. A staff person told her hello, and she said "this is my daughter" and after stumbling for a bit and almost saying my sister's name, she said my name. She was very happy today seeing my dad. I completely mesmerized how much seeing Dad makes her smile and giggle.

Dad and I spoke today with the director of the facility about how things are there. We said there are three issues: communication, staffing, and supervision. She took notes and later we saw her talking to the floor coordinator, I imagine about the issues we had presented to her.

Mom fell down again today though. She was tripped by someone's walker who was left in the kitchen area. Whoever got her dressed though afterwards did a good job, and she was clearly clean and had her perfume on.

I had my blind date today, which was a bit painful, but I'm glad that I went. Tomorrow, I'm driving to St. Louis to meet my friend from Indianapolis. I'm a bit not into right now, as I'd rather work here and spend more time with my family. But, I think it'll be fun and certainly very nice to see my friend.

One more week here, and then I'm back home!

Mom's Not Doing So Well, But Things Calming For Me

Here's the story with Mom: She gets upset a lot and will start crying sometimes, upset about something she's not even really sure of, like, why isn't some member of the family not there (who is either dead or lives in another city)? She is worse with the incontinence levels, not only having lots of accidents, having to wear a diaper all the time, but she has little control over her bowls and it often gets just everywhere. Dad said that he actually wiped her bottom yesterday, which I think is a very sad sign.

The good news is that she gets really happy when my dad is around, smiling at him, laughing. She's like a completely different person when he's there. Yesterday, we had dinner at my sister's house, and Mom was somewhat upset by the ruckus of the kids playing, so I suggested that Dad sit next to her, and then that she snuggle with him. She looked at him, then looked at me very seriously and said "well, it does make me feel better." That was one of the only complete sentences that she got out though.

Things here are still pretty nutty, and I long to be back at home. I'm also very tempted to come out to my father about being bisexual. But, I fear that he'll throw me out, so maybe I won't. I just thought a lot about on yom kippur how what I really need to work on is not apologizing to other people, but to start surrounding myself with people who treat me well. I want my family to see me for who I am, and I think a part of that is stopping to fear showing it.

Things are calmer though than when I got here, and I have my luggage and my day planner and a guest pass to the Jewish Community Center to work out.

It is a bit sad for me that it seems like there's not a lot that I can do for my Mom anymore. She doesn't recognize me at all. She isn't at all calmed when I'm there. She's on the sleeping pill now. I spoke with the nurse at her facility, who told me that Mom is just getting ready to die by working through all of her relationships (in her head) and she realizes that she's getting worse. She said that we can't treat that with an anti-depressant. And Mom doesn't get seroquil (the anti-psychotic) anymore because she's not angry anymore or having episodes like before. So really, she thinks there's nothing more medically that can be done for her. So, there's nothing to push my dad on.

Not My Day

So, I get to the airport yesterday at 10am for what I think is a 11am flight. I get to the check in desk, and there's no one around. I see on the flight list, that there is an outgoing flight at 9:30 and at 12:30, but nothing at 11am. So, I look back on my itinerary and realize that I was supposed to arrive in Phoenix at 11am, but my flight left at 9:30am!!!

After waiting for about half an hour, I finally call US Airways. They say that they'll notify the guy that I'm here and ask him to come out. He puts me on the 12:30 flight, but the only flight that I can make out of Phoenix is at 6:30, getting me into Kansas City at 10:23pm. I call Dad and explain, very embarrassed. But, clearly this is a sign that I'm under WAAAAAAYYY too much stress.

In Phoenix, I get a message from *A*. He was contacted (somehow) by some other airline in LA saying that they have my bag. He says that he gave them my cell number. So about 30 minutes later, I get a call from that airline asking me to come pick up my bag at LAX.

I go to my airline's consumer relation's desk and am told that I should wait until I get to Kansas City and fill out a missing baggage report there. Augh! I explain that since my bag is untagged (according to the other airline) and just sitting around, that they need to at least get in contact with them and get my bag in their possession. The woman gets the other airline to at least tag my bag, but that's it.

Then, my flight doesn't get in until 10:40, which was actually on time, the guy had just told me wrong. I still don't have my bag this morning. It was lost for awhile, but apparently will be coming in from Chicago in a couple of hours.

My airline doesn't want to give me any sort of compensation for this, and everyone I've spoken with has given me the run around and not been much help. I seriously may be done traveling back and forth to Kansas City.

Steps Forward, Steps Back

Well, I leave for Kansas City tomorrow. I've spent most of the last couple of days on the phone with people here touching base, with my sister and Dad, with Dad's friend who visits Mom....It appears that Dad is open to putting Mom on diapers all the time and probably putting her on a sleeping pill. And he's open to talking about the other issues.

I've been warned that Mom's in really bad shape. She doesn't make sense when she talks, has lots of accidents, probably won't recognize me at all, doesn't have much of an attention span, and has trouble following even basic directions of how to go to the bathroom.

The Sunrise facility where she lives has gone WAAAAAAAAAAAY downhill. I'm going to talk to the director of the facility and tell her that while I know that there's no use complaining a lot because no one cares - not at the facility, not the Sunrise corporate offices, not the state people, and I don't want to make things worse for Mom....BUT I am taking notes of what happens there and intend to write about it after she passes. By then, I'll be a PhD and a professor at some university, and my word will mean something. So, I hope she'll take that into consideration. Plus, have some freaking humanity!!!

Dad said that for like the 5th time in the last couple of months, he's seen her without her pad on, having had an accident in her pants. There were no staff to be found at all last night on the floor, even when he called out "is anybody working here?" He spoke with the floor coordinator the next day, who didn't seem like she thought this was a problem. They were short staffed. Even though it was barely past 6pm, all the staff were busy putting people to bed.

Mom's lost weight and they're putting her on ensure which is bs. She's can eat fine, as long as she gets reminders to keep eating. But they're always short staffed, and clearly they're not doing this. It seems like I went through that whole process at the other Sunrise (see blog anytime last year) and moved her for NOTHING.

I have a very big road ahead of myself the next two weeks. I had a migraine yesterday and so didn't get to finish my paper. So, I'll have to be doing schoolwork, visiting Mom, dealing with family issues, etc etc etc. Wish me luck!

SOOOO Done With *A*

I asked my friend A for a ride home from the airport on my way back, and here's his reply:
"I suppose I can do it, but I'm not terribly excited about driving 25 miles round trip and spending an hour on a work night to give you a 3 mile lift. Is there really nobody in [your part of town] that can help you out that night? You know I don't mind doing you favors, but this one seems to put me out more than it really helps you out. I would be more understanding if it [city 45 minutes away] or somewhere else you needed a ride from."

I am SO done with him. He has his mail sent here, never comes to pick it up, expects me to go meet him near his part of town and on his terms (eating lunch after 1pm even though I'm hypoglycemia and only near his office and if he has nothing better to do in the evening, although still only somewhere he'd go to anyway). This man is not my friend. He's just not my friend. I am going to have to take a $20 cab ride instead of having my supposed best friend meet me at the airport and then take me home to decompress a bit. Grrr.

Great Day!

I had a fantastic day today. This morning, I went to a seminar offered by hospice where I got a lot of my questions finally answered. I then spoke with my dad about what happened, and we arranged to sit down with my sister when I'm in town and talk about how things are with Mom and what can be done to make her more comfortable. He also went through his denial a bit about what our situation is and how bad things are with Mom.

Then, my friends came by my place, and we drove into wine country for a tasting. We immediately ran into another friend and just lost track of time at the first winery, savoring the taste of really amazing wines. Then, we made it to my favorite winery - a place both sustainable and organic. I became a member, so I can go by 9 times a year to pick up a shipment of two wines and have a free tasting with a friend or two. My date guy arranged for us to get free tastings there.

Then, we made a vegan picnic out at a park. It was cold, but fun. We just sat around and talked and laughed. It felt so good just to hang out and be a person.

When we came back and two stayed to watch a movie. It was a lot of fun. And one friend made me this amazing ceramic vase. Another friend came even though she's doing a fast and couldn't eat or drink anything. Screw that others who I thought were my friends blew me off; I had a great time.

Shana Tova

So, today, my day off, the Jewish New Year, I had planned on just enjoying the whole day. I ended up working later that I would have hoped last night, but felt good to get through what I got through. Then, I just did what I felt so instead of going to this meditation class, I stayed home and read. The first guy that I started dating, he wanted to go out, but I stuck to my guns.

Then, I woke up late this morning, enjoying not having to be up. I went to services at Hillel and felt a little out of place not having anyone to sit with and just not really connecting to how the service was led. I noticed my ex-boyfriend sitting with his new wife on the other side. I only stayed until lunch time.

Then, I went home to make lunch and got a phone message from one of the members of my committee. He insisted on meeting me at 3:30 downtown. I had a date at 2pm 30 minutes away in the other direction. Plus, I wasn't prepared. So, I changed my date to 1:15 and got in gear.

The date was fun. We met at the beach with our dogs. There wasn't so much to talk about - as she's never been to college and works in a vet office, so we don't necessarily have tons in common. Plus, her dog kept growling at mine. But, it was fun to be outside and do sort of an alternative taslich.

Then, I ran home to wash the sand off the dog and myself. I had all of like 20 minutes. Then, I ran downtown. Luckily, things went well, and he just expressed great confidence in me and basically is going to let me just finish my work as planned and leave town without having to do more than I planned.

After coming back home to dry off the dog, I got picked up for my next date - all the way back downtown again. There was an outdoor jazz concert, and we grabbed some food for dinner to picnic. That was fun, although I'm not sure what I think about this guy. He's an activist and interesting and an intellectual but I'm just not sure. And then when he dropped me off at home, he like leaned in to kiss me. So I kissed him! I'm so weirded out by it honestly. He took me by surprise. And jeez, I mean, I liked it. But, I think I just feel weird about dating all of these people. Tomorrow, I'm going out with a different guy that I'll be kissing. And then Saturday, this woman whose flirting with me is coming on my wine tasting birthday tour and then my afternoon date for today is meeting us maybe too.

I've never done anything like this before. I'm more of the one person at a time girl. I don't think that I'm doing anything wrong because its so early with all of them, but I'm a little afraid that as this continues, that I'm going to have to decide on only one. Or maybe I need to talk to them all about how I can't get serious about anyone for awhile.

I wish us all a happy, healthy, and balanced new year.

AAAUUUUGHHHH!!

I just got a call from my neighbors, who I totally planned the party around, and they can't make it either. So, now I've got a 12 person van and only 5 people coming including me. I am so disappointed that I've put all of this work into this and am going to spend all this money to do something nice for my friends, and a lot of the people that I really want to be there aren't coming.

I'm really stressed out right now. I am trying to push myself to finish this paper before I go to see my Mom because there will be SO much to do for Mom. But, I keep eating too much and too late at night. I slept with this guy again last night which I think is probably a bad idea, but I just need some serious stress release.

But my digestive track is all messed up. My skin is broken out in weird places. I'm not sleeping well. I left my keys in the door the other day. I am WAAAYY too stressed out.

Feeling Unconnected

My date last night, I just kept realizing how much we're really not a good match. He doesn't listen well and isn't all the interested in my research and made it clear that he'd never leave here.

Then, today, I dragged myself to this Mitzvah Day at the temple and was just overwhelmed by how many people were there, that I didn't know anyone, and that I had no idea what was going on. So, I just left.

I checked my facebook account to see that things with my birthday trip this weekend aren't coming together as I'd like. A bunch of my friends aren't coming. One couple even made plans to go away for the weekend after I told them about this plus their seemingly blowing off book club that I sat at home reading up for and am supposed to host on Sunday. Another group won't even bother rsvping even after a second nudge, so should I guess that they're blowing me off? I put all of this work into making this happen, to have it vegan friendly for my vegan friends, to not invite guys to make my lesbian friends comfortable, to rent a full sized van so everyone would fit. And I'm offering to pay for everyone. I feel like...kinda rejected actually.

This afternoon, I've got a date with the last guy standing so far. I don't even know if I feel up for it. Somehow this week, I'm supposed to finish my comprehensive exam, clean up my place, host two parties, pack to go to Kansas City for two weeks. Then, I've got to see how bad my Mom is at, fineagle to get Mom on a sleeping pill and low dose anti-depressant, get hospice ordered, and consider getting her off the Namenda. Augh!

Contradictions

So, I'm this big feminist, but I let this guy take me out to dinner. I even felt more likely to kiss him after he bought the dinner. When I date guys, I tend to get overly girly and passive. I went out for a lunch date with a woman, but I have totally different standards with her than with the guys I'm dating. I feel much more in control and more assertive. There are so many contradictions in dating.

I want to be there for Mom, but it seems like there's really little that I can do. I talk to Dad all the time, even though I big time disagree with how he's doing certain things and he'll disown me if I come out as bi. I need a vacation, but in all my free time, I go back to Kansas City.

Sense of Humor

Okay, you have to have a sense of humor about yourself. Here's mine right now. Feel free to laugh with me: In the last two days, I've had three dates all around eating sushi at two different restaurants. One was with a woman. I've kissed two men in the last two days. I've slept with one. I unsuccessfully attempted to take the front wheel off my bike to get it to the bike shop and scratched up my car. The woman date saved me by bringing in her truck to the shop after I desperately went so far as to call Jerry who told me that he'd help me if I gave him a back massage. My research team member asked in a team meeting "what's going on with [Karma] getting paid." Rest of research team: Karma gets paid in cultural capital.

Life is funny. The last two days have been funny.

Can't Do Right Today

Augh! What a day! Last night, a classmate of mine who lives out of town crashed here, so I slept horribly last night and she woke me up a bit early this morning. Then, I schlep myself to school for a team meeting only to have the meeting actually tomorrow. Then, I heard from my Dad about this meeting about Mom at her facility, and they all decided that Mom needs their highest level of care because she's gone downhill so much AND they have to give her liquid vitamins because she isn't eating enough (a sign that we're probably on our way to liquid food). Then, I rode my bike (like almost 10 miles away) to get a free tune-up only to have the place tell me that I need to have an appointment, so I had to go all the way back home. Now, I think maybe my sugar is WAY off because I'm feeling out of it and emotional. Or maybe I am just having a bad day.

Oh, and I found out that I've probably deactivated the homeopathic stuff that I got from a $500 appointment. Plus, my stomach is totally out, and I can't take my Chinese herbs.

More Frustrations With Assisted Living Facilities

So, if you've been following along this blog, you know that my mom is in the later stages of Alzheimer's disease. She moved to her second Sunrise facility last year when the first one went WAAAYYY downhill. My family started out extremely pleased with how things were at this new facility, but recently, there have been a lot of problems there as well.

They're supposed to take Mom to the bathroom every two hours, but often when a family member comes to visit, she says that she has to go and often she has had an accident, which indicates that they haven't taken her. Sometimes she doesn't have a pad on or the pad is not on right, and then things are especially messy.

I sent flowers to Mom a couple of weeks ago, and several days after they arrived, Dad found them on her night table, outside of the box and dead, having never been put in water. It isn't just frustrating that I lost $50 there and that my effort led to there being clutter in Mom's room instead of something beautiful, its that there were supposed to be several shifts of people in her room, NONE of which apparently noticed the flowers or who somehow couldn't handle putting flowers in water. If they can't take care of flowers, it makes me worry about how well they take care of people.

There are almost no activities anymore for Mom, and she now wanders the halls. Dad says recently that he found her talking to a picture on the wall.

A meeting was arranged with Dad on Tuesday with the executive director, floor coordinator, and perhaps another staff person. Dad is pretty sure that they're going to try to raise Mom's level of care to the highest level (she came in at level one, a few months ago was moved to level two) in order to charge us more money. At first, Dad was surprised that they'll claim that she's gotten worse, but after talking it over with my sister and I, he seems now to agree that clearly she's gotten worse. The issue is though - to make sure that she gets taken care of properly and that if they'll charge us more, that she'll actually get more care.

I see now that this is probably the situation at most assisted living facilities - they look great, but on Alzheimer's floors, the expectation is that the care is not so great because who is there to notice or care. One other resident's caretaker moved them out recently and told my Dad that things are not right on the floor. At the time, Dad said he thought the person's complaints were unfounded, but I think that the only reason that Mom's care is okay at all is the fact that Dad is there all the time, and the staff know that he'll notice if something not right. But still, its frustrating not only to see the neglect of the other residents, but also that Mom is being treated the way that we hoped she would.

Part of me wants to be compassionate because I see that it is REALLY hard work to take care of people with advanced Alzheimer's - they don't remember you, they require tons of patience, they are difficult to engage. Still, I wish for something better.