April 30, 2013 Tuesday

Well, mom has bed sores now, but she did get up and out of bed for the first time in weeks yesterday. She even asked for a shower!!  Today we made an agreement where she would get up every other day and then the bed sores will heal and not come back. Let’s hope she will comply.

I was sitting there with her this morning and she started telling me about the big dog that was on the bed yesterday. She said she had to call for someone to get it off of the bed. WTF? No therapy dogs ever come without their handlers…..and they would certainly remove the pet if there was any indication that a patient wanted it moved. So, I told her that and then she said it was an imaginary dog. WTF? OMG. OK……well. That’s new. 

April 24, 2013 Wednesday

I haven’t been writing everyday but that’s not because nothing is going on.  I just needed a break from the constant accounting of it all. Today on my visit to introduce Frank (spiritual counselor) to mom I felt quite a bit of relief. I finally feel that there are other people I can count on and like that will be there for my mom. The Social worker, Kelly from the new hospice met with me yesterday and she seemed genuinely interested in my mom and her needs.  The day before that we got the new doctor on board and we met him and he was wonderful. WHEW! What a great week.

I had a bit of a hard time the other day when the woman asked my mom if she had any children and she said no. I think she thinks I am her sister. I decided to not correct that, b/c things are going along just fine this way and so what? She loved her sister very much.

There has been a lot of talk about the last living brother (someone I have nothing to do with) and whether or not she wants to talk to him. She expressed seeing him in person was good but talking on the phone was not…..it’s unlikely that he is able to come visit, last I heard his heath was not good. I have offered to call him but she keeps saying no.

Anyway, I feel so much better now about the care that she is receiving and the professional people that are attending to her.  She has to continue to decline in order to stay on hospice. It’s possible that she may plateau and go off hospice for a time and then when she further declines she could be eligible again. Wait and see…..but for right now; she has a bunch of great people visiting her an taking care of her needs and I feel great about that!

April 18^th, 2013 Thursday

I got a call last night at 9:15 PM…..never a good sign, but this time it was. The nurse supervisor said she got the doctor change approved. AMAZING!

I also got a call from the Hospice nurse and we went over the schedule for home health aides and her regular visits and other offerings such as spiritual and social worker. So we’ll see how all this plays out. Today I found out from mom that she had a bath from Isabel and she likes her. Whew! That was worth the change already.  

There may have been an OT worker out today and asked mom a bunch of questions and mom seemed more coherent….at first, then she started telling me about Uncle Frisco was upstairs taking a shower. I had to tell her he is not with us any more, neither is Aunt Rene and Aunt Louise. I told her Ernest was and asked if she wanted to talk to him. She said no. 

April 17, 2013 Wednesday

The past couple of days have been almost the same….it’s hard being with mom as she is so far out there. What I mean is that she cannot find the words and when she does they do not make sense. You have to guess and guess and guess again. Sometimes she just gives up; I imagine she thinks we are stupid.

The new hospice situation is not much better yet….and the new doctor thing is ridiculous.  I am almost certain it will get screwed up now that the nursing supervisor Leslie is involved.  I was just trying to get plastic forks and spoons delivered on my mother’s food tray as she can handle them better. It’s impossible. I guess it’s something I could bring up  to the visiting Medicare and Med-ical auditors?

So mom reports that her legs are numb so I call hospice, but with this hospice they wants the SNF to try and fix things and then call hospice if they cannot resolve it. The other hospice was just the opposite and the SNF liked that. J of course, less to do.

So, for sure mom will get lost in the shuffle unless I stay on top of it. The nurse (case mgr.) was off today and that throws everything off. What a screwed up mess. No one to back them up, really?

Mom told me yesterday that this is a waste of time. I asked what is. She said staying here. I asked as opposed to what? She did not know.

It’s very hard to go see her every day. 

April 15, 2013 Monday

We saw mom on Saturday and they tried the morphine again and it was not helping the hand pain. I told that to the new nurse Kathy Fairbanks to day and she ordered gabapentin. She also told me that they were not going to help me get a doctor….like Kurt Bennett had assured me they would. Here we GO!!!

Mom was with Minerva when I got there and she said she wanted to get up. We got it all arranged and then she said no. Typical of how her days go lately.  

April 12, 2013 Friday

I rec’d a call from Kurt from the new hospice and he said the doctor that has privileges is not able to see mom as a patient and that Dr. L will not.  So, ok now what? There are 4 others that have privileges and the hospice will call them to see if they can take her. It’s all so very “in bed with each other, or mafia style”. The Dr. did not want to “steal” a patient from the almighty Dr. L.    Makes me sick that he has it SO sewn up. What a racket!

They gave her morphine under the tongue while we were there to see if it helps with her pain. Kurt the new nurse thought that she may be having nerve pain and this will help us know what else to try. 

April 11, 2013

It was another mixed up confusing day. I went to meet the new hospice company and sign up and then the SNF said they do not have a contract with them…so what, not my problem. Oh yes of course it is, that means their doctor it not approved. Of course not, that would mean competition.it got straightened out but not after the SNF told me I really should go with the other recommendation they told me about b/c 12 years ago the Social Workers grandfather was being cared for by them. I think not, thanks anyway.  I want an independent doctor and staff that are not PUPPETS for this administration.  

Let’s hope this works out. I had to tell mom’s story to two of the new hospice individuals. Maybe I should make a short film?  The new nurse wants to change mom‘s diagnosis from end of life dementia to stroke.  Well hell yes, WTF? I am not privy to that information. Anyway, let’s see how this all goes. 

The nurse wants to administer some meds that will hopefully tell us if it’s nerve issues or just “regular” pain. I am good with that. 

I met mom’s roommate’s daughter today and exchanged contact info. Nice to get to know her, I am sure it will come in handy to keep the disputes at a minimum. 

April 10, 2013 Wednesday

Silverado was wrong….no surprise! I have rec’d texts saying that Silverado needs me to contact Lightbridge to get a form (gave my fax number and phone number for contact) saying I am switching. I called at 9:50 and am still waiting. 

April 9, 2013 Tuesday

I saw mom and her hands are still hurting. I have not rec’d a call from the Lightbridge doctor so I contacted Silverado and want to switch. They are working on it. They said they could make the switch and I would not have to talk to Lightbridge again. 

April 8, 2013 Monday

I am still waiting for a call from the hospice doctor.  Mom is still having pain in her hands and now her ears, teeth and head aches. When I got to the SNF today she was trying to ask the CAN for something but she could not find the words. It took me 15 minutes to figure out it was cotton for her ears; that always meant in the past that she was having sinus issues.  She said marshmallows and then I asked what is it for? Her ears….ok, cotton. 

I put a call into another hospice organization to see if they have a doctor that is not the SNF doctor. If they do I will switch. It will mean new staff for her and I told her about it and she said she didn't like the current hospice workers anyway.

I did receive a call from the Director of Risk Management at Palomar today. It was a result of my April 2, inquiry. She said she thought I had been getting verbal updates….no!  So she said since I was asking for compensation (which I did not ask for any money, only services) that the insurance company would be getting in touch with me soon. GREAT! I cannot accept any money unless it’s a boat load b/c then it would screw up mom’s medical coverage benefits. That figures, right? And I asked what about the other issue we described in the letter such as an apology and a reprimand and policy change to prevent this from happening again? She said she could not tell me the detail on that but it had been handled. I told her it would have been nice to get a letter to that effect as the way it looks on this end is that nothing happened and no one care.

I spoke to the retina specialist and he referred me back to the eye doctor. Al of this is because i don’t want her to lose her eye and she is not able to travel any more.  The retina specialist told me to keep asking about pain and to have her read to me occasionally and track the deterioration.

I have an appointment with a cremation company tomorrow. I may as well get all this lined up so when she does pass I don’t have to worry with it.

April 7, 2013 Sunday

We were doing some spring cleaning and found an old tape that mom had recorded when she was doing a Fearless Living study group. It was great to hear her be able to make a complete sentence but the anger and negativity in her voice was all too familiar. It has been gone for the past 5 months and I do not miss it. It was very disturbing and conflicting to listen to the recording. 

April 6, 2013 Saturday

Gregg and I went up to see mom at 10:30. Minerva was there. I had called on Friday about the pain patches and what is the status but not getting any response. Today at 4:00 I find out from Lightbridge someone named Virna they have been applying icy hot to her hand each shift since April 2^nd.  I said to stop that right now as she puts her hand in her eyes and mouth all day long. What was wrong with a patch?  I told Virna to have the doctor call me.

April 4, 2013 Thursday

The past couple of days have been really hard. Mom is not getting up at all out of bed anymore. So, there’s nothing much to say but she is dwindling away each day a little more. I take her in a bacon sandwich that she loves and she takes one bite and says she’s full. All she wants is to be comfortable and she can’t get the pillow just right and she cannot operate the bed controls to raise and lower it. So, whenever I am there that is all we do. Adjust and adjust. I suggest that she might want to get up for a little while and that might help. She says everyone else says that too.

I get calls from various hospice workers and they all want to do something but she does not want what they have. Or what anyone has for that matter.  I took in some photo albums today and we spent sometime looking at them. She remembered most of the people very well. I’d like to broach the subject of her going on if she is ready and I was hoping that might bring up the opportunity, but not really.

April 3, 2012 Wednesday

April 2, 2013 Tuesday

April 2, 2013

Joy Gorzeman and Gerald Bracht

2185 West Citracado Parkway

Escondido, CA 92029

I am in receipt of your letters (see attached) and it is past the 30 days you stated that you required to investigate and I have not heard any reply from you. 

April 1, 2013 Monday

I spoke with yet another attorney and found out that we have no case at all because of the fact that I had no support from our own primary care physician. He flaked out on me early in December and I did not get a replacement. The SNF doctor is not about to support my claim as he would have to sh#t where he lives, he works at Palomar Medical Center and about a million other SNFs in the area. Talk about collusion.

I saw mom at 3:00 and she was sleeping. It is very hot in her room. I asked maintenance to open the inside vents and I brought her a fan.  Mom remarked that she likes the artwork we put up for her. She said her hands did not hurt as much and that her eye was not hurting. I tried the phone from home out with her and she is able to answer it but not operate it. I need to get some dots to put on the buttons so she knows which one does what. She cannot reach to answer it but I found out yesterday that the staff will answer the phone and hand it to her if they are in ear shot.  I took her a bunch of pretty cotton night gowns that I found in her belongings as I was going through them. I sure am glad I hung on to them. She was happy to see them even though she does not remember them. 

March 31, 2013 Sunday

I went in at 1:30 and they were weighing her. 153 I overheard. I know she used to be 175 back in November.  It’s mostly been since the hospital threw away her teeth. I am not sure what other conditions that she has now might contribute to weight loss but I am certain the teeth have had a great impact.

She was very warm and they had her dressed in a long sleeve shirt and normally that’s good but the room was very warm. The roommate had two fans blowing. I asked maintenance to remove a chair and check on the temperature. I got up on a chair and opened the vent s bit but it looks like the upper vents are closed down too.  Mom is very unhappy with the room right now and I am hoping that will change. I cannot possibly got back to management and ask to move her again. Gregg and I hung up some art work and rearranged the room so there it appears a little larger.  

Mom told us to not hang the art as we might not be staying in this room. I told her we could take it with us if she moves.  Since I have never had children, by choice, I have to imagine that this is similar to how parents feel when they bust their ass and do something they think will greatly improve their kids’ lives and the kids just HATE it. J oh well, fun lessons to learn at 60. 

March 30, 2013 Saturday

Mom is still getting used to the move. New staff and new roommate. Not too happy right now. 

March 29, 2013 Friday

We moved mom into her new room at 3:00. It was a long day for her and the first thing she asked for was to get undressed and go to bed. I don’t blame her there. I know it’s so very difficult to make changes in their condition.   The roommate was a little pissed off  right off the bat b/c I washed my hands in the shared bathroom sink…..I get it but hey, I tried to assure her I would not do anything else in there. She’s real hard of hearing so like Gregg said if we speak as loud as she needs it feels like we are yelling at her.

Mom thinks this room is smaller. 

March 28, 2013 Thursday

I rec’d a call from Mikki at the SNF at 11:49 AM she said they have a semi-private room for my mom. She needed authorization to move her…… All I could say is what? WOW!