Monday, August 31, 2009

The Little Things

Tonight, I took Mom outside to sit and watch the traffic. It's one of the few things she enjoys doing. We rolled out to the sidewalk and parked in an indentation in the Sherrill Houses property brick wall. It's her "favorite spot" she says. We had the same conversation that we always have out there. The one where she says "we can go inside when the bus stops here" and I say "the bus does not stop here". Then she argues with me for a few minutes until the bus passes and doesn't stop there, but stops up the street. I show her the poll in front of her where there is no bus stop sign, and she insists that that must not have been the bus that stops here..."Let's go".

During our outing to the sidewalk, she told me that she lost her phone numbers.

Last night I called her, and right away she insisted that I call Julie to find out why she didn't visit at the precise time she said she would, and to tell Julie to call her. I told her to call Julie herself. She said she couldn't find her numbers, she said they must have fallen on the floor. I urged her to get an aide to help her find her numbers, she didn't want to bother anyone. I said "If you don't want to get help to find your numbers, perhaps you don't want to call Julie bad enough". Then she asked me what Julies number is. I reminded her that she has been calling Julie at the same number long enough that she should know it by heart. She said "1 6 1 7 is that right?" I said "That's right, what are the next 3?" She told me the next three, and the four after that. She remembered Julie's number! I made her repeat it to me, and we hung up because she had a hair across her ass to call Julie.

I called Julie about 20 minutes later. Mom called her without using her phone numbers! I guess she was so intent on ripping Julie a new one that for one furious moment she had some mental clarity.

Tonight, after we got back to the room from our stroll, I saw the phone number cheat sheet right there on her bedside table. She then told me that she found it in the drawer. I reminded her that not more than 1 hour ago she had told me that she lost it. She denied it, vehemently.

Also tonight, it took her 5 tries and 15 minutes to dial Kathy's number. Go figure.

Friday, August 21, 2009

Monday Car Ride.

Anyone who is keeping track will know, we are not on any financial assistance anymore. Medicare is finished paying for Mom's stay until they see some more improvement. At that point we can possibly get an appeal, and have them start paying again, but for now...we are on our own.

On Monday, Julie wanted to take Mom on a car ride. I was all for that. We got an aide to help get Mom in Julie's car, and we buckled her in! What a wonderful time she had.

We drove down Commonwealth Ave, to the Public Garden, and around the Boston Commons. As we drove, we decided to pick up Kathy at a close T station and drive her home. This proved to be a little too much for Mom. We circled the Boston Common about 4 times until Kathy emerged from the Park Street Station T stop. She was coming from work and just wanted to be a part of the first outing of Mom. On our way to drive Kathy home, Mom got car sick. I felt horrible, not just for the fact that she got sick, but for the fact that I just wanted to do something nice for her, and she got sick. She got sick again after we dropped Kathy off at home. Damn, but what a wonderful time she had regardless. She can't stop talking about it, and can't wait to do it again.

Even with the carsickness, she had a great time. I think we over did it, it was an almost two hour drive all tolled. Kathy got home fine, we got back to Sherrill House fine, although we did have a little snafu, when after we got her back into her wheelchair it looked like her right (weak) ankle was injured. An x-ray the next morning proved that everything was normal...thank gawd!
Julie is planning to take her on another road trip on Saturday. I hope I can be present!

Wednesday, August 12, 2009

Update, Wednesday August 12

If you have been reading this blog with any regularity, you are probably surmising that we are wrestling with some big situations right now with regards to mom's next steps and long term care, and you would be correct. I am not going to sugar-coat it; things are tough right now. Mom's therapies are ending this week completely. She is not progressing at this point. That is not to say that she won't make further progress. It's just that, at this moment, we are in the middle of figuring out our next steps for her and, since her physical therapies ended last week and her speech ends this Friday, she is in the interim where she is receiving no physical therapy right now while we figure out what private therapy we can get for her and get a schedule started up for that.

Today we will hear the assessment of mom's situation from our independently-hired Geriatric Care Management Team. I may not be able to attend the conference call (I have a training appointment tentatively scheduled for the exact same time, with mom's speech and physical therapy team at Sherrill House -- they invited us to have a training since mom's professional therapies with them are ending, so that we can help her to maintain and continue what she has learned.) The meeting with the team is at 3 on a conference call. They will report to us what they assess to be the best case scenario for mom's recovery, what the most realistic picture will be, what mom's wishes are versus what the realistic picture is, what we might be able to expect, and a detailed plan of action for mom's care and living situation. All of these things will take into consideration all the large picture aspects as well as all of the small details. This is a very big deal - these are people we have independently hired as advocated for mom's care, so they have no bias, no Medicare leaning on them, nothing. They are here for us so we anticipate an honest and real assessment of our situation and what steps we will take to bring the situation to the best possible state.

As for mom, I'm having a tough time lately with mom. She just does not understand why she cannot go home. It's heartbreaking and extremely frustrating. She says she can do things by herself, but she can't. She barely even looks to the right half the time. She still asks me to do things for her when I am there. We are in a very painful situation here and there is just no prettying it up. I worry that mom will make no more improvements. I know partly (...maybe more than partly) it is her own attitude/personality that is getting in her own way and this is killing me because it is dire situation - the time is NOW. There IS no waiting until tomorrow. It's maddening. The thing is, she knows -- at least she knows for a minute. But she simply cannot control her compulsions to continually engage in bad habits of communication. This makes it basically impossible for us to help guide her toward the improvements she needs to make in order to attain any independence. I wonder if she is simply incapable of making the changes that she needs to shore up these improvements. I am facing the facts that it is entirely possible that this is the case. Many of the signs do point to that possibility as an eventual reality. Sigh. Only time will tell. And, to be honest, the hourglass is running.

Hopefully we will have more information once the Assessment is complete. Stay tuned.

Saturday, August 1, 2009

Good food, great company. Next step.

Physical and Occupational Therapies are done. Medicare will not cover these anymore since they are not seeing the improvements they need to in order to keep paying.

Speech however, is giving Dolly another week. Yay! So very pleased!

So, Medicare will cover another week of Moms room and board and Speech therapy, and then it's kaput....for now. We are hoping that she will still make more progress. Progress enough for Medicare to pick her back up again in the very near future. But as of 8/7 or 8/10 we will start to pay ourselves.

Kathy and I had dinner with Mom tonight. Kathy went to Whole Foods and brought a smorgasbord of delicious food for us to share. Yummy! We had an excellent visit, we ate, talked, schmoozed and rolled around the facility. We even shared a blueberry pie... it was delish! Later, we went into the empty dining room where Kathy tackled the most massive matt in the back of moms hair while I did some simple math with her and the 'repeat after me' exercises. I believe she is getting better at these exercises. We also had talks about listening and comprehending and the fact that she has a problem with attention. I think she gets it, but then of course it fizzles away in the next minute. We are all taking baby steps here, even us as the teachers, she is mentally fragile and has a hard time remembering to focus on the context of the words and their meaning, instead of the actual words. We did some practice on that, too. I made her repeat something I said 30 seconds later, in her own words, and she passed! But, later, she couldn't remember what that was. It is still frustrating, to say the least, but I do see a light at the end of the tunnel. I still have hope.

We have hired a Geriatric Care Manager (GCM) to help us with Mom's needs and the execution of said needs. For now, she has no more therapy besides the Speech (ending in another week). The GCM will set up some outside therapies that Medicare will not pay for as of now. I feel wonderful making this decision to get the help that we are losing. They will also help with doctor's appointments, advocating for her, and anything that she needs or will need to get better. Ultimately, they will be her voice. One great thing about the GCM that we chose is the fact that she had worked in the very facility that Mom resides in for 7 years. She knows the staff, she knows the ins and outs of the facility, and she had some great chemistry with Mom.

We have the assessment scheduled for Tuesday, I will be there, and I hope it is lengthy and thorough. She needs this at this point, I can't think of a better way to spend money than for her care and wellbeing.