August 27, 2013

I go and see mom several times a week now. It used to be everyday, but now I get it...I can't keep my sanity and do that anymore. Today's visit was looking good: she was awake and alert at 2:40 PM and looked bright eyed. We had a few words of conversation and they seemed to even make sense. She was watching me hang up her freshly laundered clothes in the closet and asking if there were enough hangers. what? nice? rational thoughts.

Then it went down hill as it always does sooner or later. She started telling me all about what she had been doing and who was coming (the tax man). All of her tales were fabricated and I just went along with them. It's all she has.

I had to leave as we get in this indecisive place of no return and it just hurts too bad to stay and participate. I am weak I guess, but I just feel so helpless and useless to a point that I need to leave to not feel terrible. IF I were making some kind of difference, then I could manage to stay, but it's not productive and she gets frustrated and more confused...So I let her go back to fantasy land where things are more manageable for her.  And I come home to my reality where things are more manageable for me. 

June 20, 2013

You go day after day, month after month, and you try and try to get the best care for them and make them happy, etc. and fight the battles and nothing changes and it feels so hopeless and so futile.  You talk to all the nurses and caregivers and staff and plead and point out problems and then you call the doctor and talk it all over with him and they all agree to one thing and then nothing gets carried out. AND on top of it all the patient fucks with your head. Today is just the latest example; she said she wanted to get up so I told her to push the call button and I stayed and made sue it came on. Then when the CNA arrived they asked me “what?”. I said she told me she wants to get up. They looked at mom and mom said “Just kidding”. WTF. What an asshole. I apologized to the CNA and told mom goodbye, So the CNA started to tell me that she does this kind of shit all the time. I just put my hand up. I don’t want to hear it, I KNOW it.  I don’t want to ever go see her again. So what kind of sick, selfish, person am I? 

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!

March 27, 2013 Wednesday

The joke was totally on me. The attorney called me and we discussed the matter and it looked like he was going to be able to build a good case but guess what? The only thing he could win would be the money would be paid to the SNF in Medicare dollars for the 30 days that was robbed from my mother. She would not benefit AT ALL.

So, off to Medical Malpractice consultation land now.

So I arrive at the SNF at 3:35 to see mom today. I wanted to get there early and avoid the PT session that happened in the bed next to her like yesterday. So, there is no glass of water anywhere near my mother. Not even an empty glass. I cannot even tell you how many times I have told the staff AND I have a note taped on the bed tray.  WTF?  Again, I have to wonder what else they are not doing. With this kind of evidence why should I assume that they are giving her meds, etc. ?  The only choice I have left is to complain and file suits. They don’t listen and I have voiced my concerns over and over to CNAs, LVNs, RNS, DONs, Directors and any other person on staff.  How can they NOT get that she is helpless? She cannot even push the button to make the bed go up and down and or operate the nurse call button. 

She told me today she is sorry it’s cramped. How brave is that to worry about me?  I am just sick to my stomach about this situation and cannot seem to get any improvement.

The very sick woman is now very verbal and her medical alarm goes off and no one notices and so it rings forever until someone happens to notice. I had to tell a CAN today and she went and got a nurse and who knows how often that goes on……So it’s not bad enough that she sounds like she is choking and makes disturbing guttural noises all day long now her medical equipment is a nuisance as well. 

March 26, 2013 Tuesday

At 10:00 I had a meeting with a volunteer from HICAP (Health insurance Counseling and Advocacy Program) 800-434-0222. WOW! I sure wish I had been in contact with these people a month ago. The man that was helping me listened to be giving the overview and then said “that’s been changed”!!! I said I know I have the article here from AARP magazine. So my question is: if this man knew about it then why didn’t Medicare and the SNF know about the change. This all could have turned out differently for my mom if it had been caught in time. So now its about how do I fill out this form and submit it to get it turned around? He said I am going to refer you to our attorney. He can file it for you. OMG, I thought I would melt, FINALLY, some real help!!!! 

So, let me get this right:

1.) All of this has not been for nothing; it will get overturned, however, too late in our case.  That’s OK with me, I want the people involved to know what they did was not in the best interest of the patient.

2.) And this is not going to cost us anything to have an attorney file this appeal?

I just spent some time with mom she is not doing well at all. She is not getting dressed the last two days and not getting out of bed either. The woman next to her is in dire straits and makes horrible noises every so often. It’s very disturbing.  The team of REHAB staff was in there while I was trying to visit with mom. It was very obnoxious.

I posted some new calendar photos on the wall for her today. She is very worried that we might disturb someone. WTF? It’s our turn.  These photos are not hurting anyone and it gives her something to look at and hopefully dream about while she is laying in bed all day. I tried the cassette player on her while I was there but she does not want it. I just brought it home; she really does not want it. 

Financial Planning Report

Be sure and have medical and general Power Of Attorney filled out and keep copies.

Many of the agencies including Medicare and Medical (and even some utilities, etc.) will not talk to you if you are not authorized and once your person cannot sign for themselves or speak you it will be more troublesome to get the documents created that you need. Fortunately, my mom was on top of it all.

In addition, she had this figured out: If you are low income you can qualify for Medi-cal. Right now it’s $1161 per month for one person. She was just over that but listen to this; she purchases a qualifying deductible insurance policy that allows her to get Medi-cal.

So what this means is that my mom will have only $35 per month income from here on out and in order to keep her qualified in the Medi-cal system we will have to pay out of pocket $225 per month for a supplemental insurance policy that picks up a small percentage of costs for medical items. Sounds like a bargain when you consider the cost of a room at SNF is $6000 per month.  

Here is the number of a very valuable resource: Consumer Center for Health Education that helps with Medi-Cal & Medicare questions. 877-734-3258

March 25, 2013 Monday

The beauty of voice mail delivery; I just (4:50 AM) rec’d a v/m from yesterday at 11:00 PM from Jessie Life Care. They are telling me that the doctor ordered vicodin and it has codeine in it and mom is allergic to codeine. Should they proceed? OMG, what is going on?  What drug had been ordered and why did the doctor not look at her allergies history? And WHY has nothing been given to her for her pain four days later?

 I have to tell you I thought it might be someone telling me she had died. She is in bad shape. She would not get out of bed yesterday and is not eating.

What have they been giving her since Friday when I requested something more than Tylenol?

You have to figure that half of your visit to the SNF will be spent tracking down the staff and trying to find out what is going on. That is, if your patient/loved one has dementia or brain injury and cannot confirm to you what has happened or not happened to them.

I just (5:30 AM) called Hospice and Debbie will call me back.  Oh, this is priceless, now they are blaming me and said I asked for the medicine. What a bunch of BS. I asked for something more than Tylenol, they are supposed to be able to figure it out from there.

NOTE: the whole idea of hospice is that they are supposed to provide extra comfort and care to the dying patient and to provide family support. I am not feeling it. I interviewed 3 hospice companies and they all send out their best marketing teams and make wonderful promises that their staff does not or cannot fulfill. For instance last week I asked the case manager nurse when I was going to start meeting with the team? She asked what? And then determined that she would ask each individual (spiritual/home health/social) to contact me with reports…..I wonder when that will happen?

At 8:30 AM I rec’d a call from hospice saying that a nurse would go out today. She said that SNF said that they did NOT have an order from the Dr.

At 11:00 AM I receive a call from the Spiritual care Counselor at Hospice. She said that the case manager Jeanette told her to report to me when she visits. She said mom is not very receptive and I reminded her that I wanted to be there and introduce them the next time she went out. She said ok, yes we could do that sometime. And so I asked, when? Maybe next week. I again said when? Are you not committed to this? If not then I will stop asking you. But I have offered to be available any time and you are not committing to a date. What the deal? So she finally said well when is good for you and I said, no, I offered to meet your schedule and when is that? Next Tuesday at 11:00. FINE! Why does it all have to be so effing difficult?

So at 1:20 PM I get a call from the case manager and she has her “in charge now oh boy now voice going” so she recites to me what I already know and then I tell her why are we still talking about this? Just get mom the medicine and then monitor her to see if she is OK. How hard is that?

I get another call from Hospice to see if they want me to get mom a retina specialist appointment. I told her it was already handled. 

I saw mom at 4:15 PM and she was doing ok. She did not think she had any pain meds given to her and I did not find the nurse anywhere around.  I sat with her for about 20 minutes and observed that her eye is looking a bit better. I guess the pred forte drops are helping. Good news. We could use some. 

March 24, 2013 Sunday

Mom was in bed all day, she would not get dressed either. No food and wants to go home. Gregg and I spent about an hour with her at her bedside. It was so cramped and uncomfortable, I sat in her walker and Gregg sat in a folding chair. All the noise from the TV on one side and the woman seriously ill on the other making all kinds of gagging choking sounds. It’s awful for everyone. 

March 23, 2013 Saturday

We went to see mom this morning. She was in pain. The same pain she was in yesterday. No one had received the order for anything stronger than Tylenol even though I asked Ada for it at noon yesterday. 

So, I called Hospice at 9:30 and spoke to Jessie. She said she would take care of it. I get a call from Gil at 11:10 and he said he just go the order from Dr. Lee for Oxycodone. I asked him if it stipulated with food like I just asked for he said not. So, we finally determined it was not the order from this morning it was from yesterday. I told Gil I had called hospice and that they were sending out a nurse. He asked me if he should wait. I said no, she has been in pain since yesterday.

Next I get a call  from Diane from Hospice at about 2:00 (I was in BBY at the time) asking if I still want her to go out and administer pain meds. I told her about the above conversation and she said she would call back and talk with Gil about it all. 

March 22, 2013 Friday

I asked Ava to set up the next two transports and spoke to her about the new eye medication also mentioned that the pain needed to be controlled by at least 2 Tylenol daily.  She said she would take care of it all.

The CNA Raquel told me that the diapers that the Hospice was bringing are too small. So I called and spoke to Jeanette and told her that and that the wheelchair cushion needed to be different. She said she would take care of that.

The Dr. S. told me that I could have a different doctor form the Hospice group or I could change hospice but it was not appropriate to take a hospice patient out to regular doctor visits. I was under the impression that after the first office visit she could come to the SNF as she had privileges.  She does not any longer with the SNF.

So I called Hospice and told them I wanted another doctor they do not have one, she offered the nurse practitioner and I said not good enough. She then said that I could get a list of docs that have privileges from the SNF and choose one of them. OK, for now I will work with Nurse practitioner and then choose an outside doctor.

I called and spoke to Anne and she said she will leave a list for me this afternoon at the front desk. 

March 21, 2013 Thursday

Met mom at the eye doctor, that was quite an ordeal but I’ll go into that later. Turns out she is sending us to retina specialist but suspects that blood flow to the eye is restricted somewhere and it is causing the eye to grow more veins and might be neurovascular glaucoma

March 20, 2013 Wednesday

I have to tell you it’s so very difficult some days to be tolerant of the disease behavior. For instance; mom cannot even make the distinction between I want to get up and I need help getting up and I have to push the call button for help. What!  you might think? Yes, it’s sad but true; the brain can be so damaged that to string the thoughts necessary for the simplest things may not still be there.  So, then it’s your job to stay calm and helpful, Right.  Some days that is not possible, and that is when you may make up a reason and leave. It’s not fair to them. 

I wish I could think of all the things that I want to write here to give you a heads up and some insight into this world of living with the end of life stage of a loved one. I can tell you that before this stroke that my mom and I had a very strained relationship and now it’s better than it’s been in years. She was “Negative Nellie” and in pain all the time. I had exhausted all the doctors in the city of San Diego and Escondido too.  Now, the pain is gone. Completely. That is the only silver lining in the whole thing. She was VERY difficult to be around for any period of time. I could literally take about 10 minutes and then I was ready to scream. 

Now, she is a kitten to a great extent, and so dependent on others for everything she needs.  You would think she would be angry; I know I am angry and would be even more so if I were in her shoes. I have given her major doses of Star of Bethlehem and some amino acids that could be easing the depression.  So, my point is; YOU have to be very patient and compassionate with people in her situation but there are breaking points, so you have to take care of yourself and just leave and come back when you are in a better frame of mind.  

Mom asked for her meals to be in her room from here on out. There are only 2 people in the room right now since I assume the other person (the crying woman) is in the hospital since all of her belongings are still in the room.  So I asked the nurse to make this happen. We will see. 

Lots of my frustration has been the staff at the SNF and you have to, of course, handle that separately

Every day I wonder is this it? The day she dies in her sleep? I hope so. 

At 3:00 I got a call from the director and she told me in a nut shell that she had contacted 14 places and at one of them they “might” be able to take mom. So, now I need to go there and look at the place and let her know. I am really torn at this point; b/c mom is declining so much so fast I do not feel like a move would be tolerable to her.  I’ll go look at the facility but I am not sure what the best is for mom. She tells me with her eyes and a few words that she does not like the conditions in the room but what is the new place is worse in other ways?  I am telling you know. Figure this all out way before the time comes that you need this for yourself or your folks.  The director was very nice and I truly believe, and that’s saying a lot, that she cares and is trying to help us at this point.

March 19, 2013 Tuesday

Basil called at 8:30 and said the SNF doctor does not know of any eye specialists…..so could I find one? So, I had gone through mom’s purse the night before and got out a card from an eye doctor and was already going to call and set something up myself. I did, and we have an appointment at 1:00 on 3/21.  I also set up a new primary appointment for Friday.

I got a call from Gaby and they were asking if I was going to show up for the care plan, meeting. I told them that Sadie said we did not have to since we spoke to her on Friday. 

Jeanette from Hospice was present and I am not sure who else was there, I was on speaker phone. I told them all that I felt that I was taking her outside the facility to doctors as I felt like it was too much like the fox guarding the hen house. They were surprised…….

I rec’d another call from Angel to let me know she was setting up transportation to the doctor appointments but I may have to pay if over a certain number of miles. 

Notes: Lessons Learned

Do not think of this as a business relationship with the company that is taking care of you or your loved one (but it is and never forget that either).  But when it comes to the hands on care: Go straight to the caregivers and bond with them. They are the closest link to success or failure. Even their supervisors cannot get them to take better care of you if they do not want to.

• ·       Don’t give up having your own doctor!!!!  the SNF says they have to have privileges (which is a little too familiar for me) or you can take your person out to a doctor. This is vital, too much of the fox guarding the hen house otherwise.
• ·       Keep a Video diary. This would be good especially if you are doing appeals. I didn’t do this and am kicking myself.
• ·       Get on as many waiting lists as you want. Check out several facilities that are close by and nice and get on the waiting list right away. You never know what might happen and you can always turn an offer down. If I had known this My mom would not be in the unacceptable situation she is in RIGHT NOW. I have deep regrets over this and hope you can avoid it.
• ·       Let’s say you and your loved ones are lucky and have long term care insurance (which is very costly) and you might be able to use it for four years (I think that’s all the “term” is good for), then the next step would be to start selling off your assets and living off of them to the tune of $4000-10000 per month (that’s what a bed and all the trimmings cost at these skilled nursing homes) until all of your assets money is all gone,  and then you are broke and go into the “system” AKA Medi-cal. Then you and I will be experiencing all of this and the reason I am writing this blog, so pay attention, this could be YOU.
• ·       Do NOT depend on anyone to be on your side.
• ·       Always question everything and go right to the source; i.e. Medicare, Medi-cal, etc.
• ·       Do your families laundry. They lose (steal) things at the hospitals and skilled nursing facilities. So in bold, large letters label everything.
• ·       If you have Medi-cal; do not think that you will be able to have a bed that is acceptable to you. You may end up in a three or four person room with people that are crying or screaming or have other bad inconsiderate habits. There are waiting lists for beds. Especially Medi-cal beds, the reason is that the SNF are for profit businesses and they limit the number of beds they are willing to take on in their facility. It’s a money thing, of course.
• ·       If you have lots of money ($4000-10000 per month), then you will have your pick of places to live out your last days. (see above; only good for a  little while, thus the name “term”)
• ·       Appeal if you don’t feel like you got a fair deal. Every agency has its process, use it. Many people just take whatever the doctors and facilities tell them as gospel. You may not win but, at least you got your chance to tell your story, but again do not trust others to be on your side. You have to fight. 
• ·       I learned something very valuable today in the meeting. I thought the CNAs had much more training than they do: SIX weeks is all they have. So do NOT think they are going to do much more than change the person and get them water and up and down into wheelchairs etc. Do not EXPECT them to notice anything wrong and report it either. I imagine the nurses do not care for that much. So, take all of your “observations” directly to the nurse to try and get action taken. 

March 18, 2013 Monday

I went to see mom at 3:30 today and asked about her eye again. Gregg had asked Caesar (LVN) to get something down about it yesterday. This time Martias (LVN) called Jeanette the Hospice nurse and I spoke with her and said I want to stop screwing around with this I want an eye specialist. Dr. L has been treating it unsuccessfully for months. 

At 9:30 PM I get a call from Leslie from the SNF and she said Dr. L was stopping the drops, that she was allergic to them, and he was starting something else. I said NO, have him call me, I want an eye specialist. WTF do I have to do to get this accomplished?

She did take her meds and some vitamins. Not sure which ones.

I left at 5:00. She did not want dinner again.

It is 9:40 PM as I write this and I did not hear from the director. I know, shocking! 

BREAKING NEWS:

I was reading the March 2013 issue of AARP magazine and on page 4 there is a brief article that states it is no longer a REQUIREMENT for people with degenerative diseases such as MS or Lymes or the like to SHOW IMPROVEMENT or lose their Medicare Rehab days. Thanks to Glenn Slowick and his wife Kate Mealing in Connecticut.  Great breakthrough, too late for my mom but at least my fight was on the right track!!!!

March 17, 2013 Sunday

Gregg and I went to see mom it was the same thing the eye is still messed up. Gregg got Caesar to agree he would call the doctor.

Mom was not having a good day, she was in pain. Her eye is blurry now and hurts her. So how does it work? If they are on hospice do you just let them go blind?

She did not want to go to dinner. 

March 15, 2013 Friday

Gregg and I had a meeting with the director and she said give me until Monday I will see what I can do.

I learned something very valuable today in the meeting. I thought the CNAs had much more training than they do: SIX weeks is all they have. 

So do NOT think they are going to do much more than change the person and get them water and up and down into wheelchairs etc. 

Do not EXPECT them to notice anything wrong and report it either. I imagine the nurses do not care for that much. So, take all of your “observations” directly to the nurse to try and get action taken. 

03/14/2013 Thursday

While in Trader Joes’ I receive the call from the Department of Health. She tells me that it cannot be proved that the carelessness of Palomar Hospital throwing away my mom’s teeth had any impact on her health. Because and listen to this; she has dementia.  She goes in to tell me that there has to be a preponderance of evidence and there is not. Of course not I said, they have “spun” it that way. Do you honestly think that there is any written evidence that would support a “medical” professional making a mistake? How old are you? ten?

I told her that I have records (see this blog for instance) but not as much as I would have hoped for; that dream went away when the primary care doctor David Carty flaked out on me. I should have immediately gotten her an OUTSIDE the SNF doctor and done a video diary and got my own supporting evidence.  

Please, please learn from my mistakes and do not let your loved one suffer and lose out because the Medical System and even the Ones (Department of Health) who are supposed to be on our side SUCK. Actually, I think the Dept. of Health woman wanted to help but her hands are tied b/c of the rules.  I said “I bet you don’t get much job satisfaction, huh”. She said once and  awhile…….

Now, I have to put it in writing that I want a redacted copy of her interviews. I am not done. 

03/13/2013 Wednesday

Called the SNF at 7:00 AM asked Ada to have Dr. L. call me.  He just now called me at 9:45 and I asked him about the request for a liver panel on 2/22 and then again on 2/26. He told me that he wanted to know why and asked the nurses to find out from me. I said they did not ever ask. Another communication breakdown. I asked him “are you just not going to talk to me anymore about the patient? I am the POA”. He said he would and he was, as he just called me. I said only b/c I sent a message for him to do so. I told him that at the time I requested the liver panel she was having pains in her right side and her eyes were not yellow, but grayish and that had he bothered to contact me he would not have ran a USELESS CBC panel, but could have ran the liver panel I wanted.

I have to listen to their hold sales pitch every time I call and I really need to ask them IF the type of care they have administered to my mother would win them the effing award they boast about? I think not.

Called Hospice at 7:45 and asked for Jeanette to call me.  She called me at 9:00 and I asked her about l how they know what is going on and how to appropriately “care/comfort (drug)” her for the stages of death? How is that before your first cup of coffee conversation? She said there will be stages of further deterioration such as: not wanting to be social, lethargic, agitated and confusion, etc. So there will be no blood/diagnostic tests ran anymore. We just wait for her to decline and die. And of course appropriately giving her morphine when the pain of organs shutting down become too much to bear.

I asked her that in her experience how long do people typically live in this state? She said after they totally quit eating (which she is currently at 5-15% /per day now) two weeks is about all it takes to die. Depending on how many “stores” they have and she has little to none. It all began with the Palomar Hospital throwing away her teeth but no one on the face of this earth cares other than family and friends. You can be SURE the asshole that did the actual act of throwing away the teeth has not suffered a single hang nail since. 

Jeanette is aware that I want to get my mom to some decent condition so she can die in peace. She stated that there may be a facility in El Cajon but it has some director Hospice requirement that Lightbridge does not meet.

Hopefully, mom has no idea how fucked up the “system’ is with re: to care for our sick and dying. My husband thinks they might want to get a TRO against me I am so angry.  I just want to be a daughter to my mom on her last dying days and the challenges I have to face in order to get her the best care on a daily basis make it so difficult to do that.

I just left (9:30) the SNF after seeing mom this morning. She is still having trouble with the new teeth. I called the dentist and asked him to visit and adjust the top ones again. She puts them in her pocket b/c she cannot get to a sink by herself and she cannot even use the call button and even if she could she cannot communicate what she wants or needs.  So I tracked the teeth down and they were in the dirty laundry in her pants pocket just like she said. So that means she did not have them for breakfast. Sat, the CAN witnessed her putting them in her pocket the other day so you would think they would be on the lookout for that? NO ONE is paying any attention to her unless I go there every day.  So, as I was leaving I asked the day CNA Ileana to put a note for others to watch for this. She said she would.

Minerva and I spoke away from mom as mom told us both to leave. Why I am not sure. Is this part of her shut down? I filled Minerva in about mom’s condition based on the nurse Jeanette’s information. 

More heartbreak, I just saw her at 4:00, she will not eat the food there. I gave her some blueberry yogurt fomr my stash in the kitchen. If I was not there no one else would have thought to offer that to her.

Then she asked me to talk to Pete about her coming home. That is my deceased dad’s name, she meant Gregg my husband. How do I tell her there is no home to go home to? 

03/12/2013 Tuesday

Gregg had a phone conference with Sadie at the SNF. One of the things we learned was that Dr. L. decided it wasn't necessary for the 2^nd time I requested to have a liver panel done. BUT, no one had the courtesy to let me know.  I asked on 2/22 and again on 2/26 now I find out on 3/12 that he decided not to do it. WTF?

I did not go see mom today. A loving, well-meaning friend gave me a 2 hour massage. It might have been too much….or not enough, hard to tell. Either way I was not ABLE to face anything the rest of the day. When Gregg told me about his conversation with the director I wasn't able to have any emotion about it at all. 

Wednesday the 13th, as I am writing this I have so much anger I cannot contain it. I had to go in and ask Gregg to hold me to keep me from “exploding”. 

03/11/2013 Monday

I went to see her at 4:00 and she told me I want to go home this is crazy. How can I tell her there is no home? I told her that she cannot be left alone anymore and that I am trying every day to get her in a better place. What kind of loser do you think I feel like? 

So, what this tells me IS that she does not know I had to sell all of her belongings and give up her apartment and that it has taken putting her in this awful situation (the crying woman next, less than 3 feet away, to her and the constant TV ON, on the other side in order for her to be fed up and want to go home.  Holy Crap. I hate that she feels so bad and hates where she lives.

Lessons Learned

Do not think of this as a business relationship with the company that is taking care of you or your loved one (but it is and never forget that either).  But when it comes to the hands on care: Go straight to the caregivers and bond with them. They are the closest link to success or failure. Even their supervisors cannot get them to take better care of you if they do not want to.

• ·       Don’t give up having your own doctor!!!!  the SNF says they have to have privileges (which is a little too familiar for me) or you can take your person out to a doctor. This is vital, too much of the fox guarding the hen house otherwise.
• ·       Keep a Video diary. This would be good especially if you are doing appeals. I didn’t do this and am kicking myself.
• ·       Get on as many waiting lists as you want. Check out several facilities that are close by and nice and get on the waiting list right away. You never know what might happen and you can always turn an offer down. If I had known this My mom would not be in the unacceptable situation she is in RIGHT NOW. I have deep regrets over this and hope you can avoid it.
• ·       Let’s say you and your loved ones are lucky and have long term care insurance (which is very costly) and you might be able to use it for four years (I think that’s all the “term” is good for), then the next step would be to start selling off your assets and living off of them to the tune of $4000-10000 per month (that’s what a bed and all the trimmings cost at these skilled nursing homes) until all of your assets money is all gone,  and then you are broke and go into the “system” AKA Medi-cal. Then you and I will be experiencing all of this and the reason I am writing this blog, so pay attention, this could be YOU.
• ·       Do NOT depend on anyone to be on your side.
• ·       Always question everything and go right to the source; i.e. Medicare, Medi-cal, etc.
• ·       Do your families laundry. They lose (steal) things at the hospitals and skilled nursing facilities. So in bold, large letters label everything.
• ·       If you have Medi-cal; do not think that you will be able to have a bed that is acceptable to you. You may end up in a three or four person room with people that are crying or screaming or have other bad inconsiderate habits. There are waiting lists for beds. Especially Medi-cal beds, the reason is that the SNF are for profit businesses and they limit the number of beds they are willing to take on in their facility. It’s a money thing, of course.
• ·       If you have lots of money ($4000-10000 per month), then you will have your pick of places to live out your last days. (see above; only good for a  little while, thus the name “term”)
• ·       Appeal if you don’t feel like you got a fair deal. Every agency has its process, use it. Many people just take whatever the doctors and facilities tell them as gospel. You may not win but, at least you got your chance to tell your story, but again do not trust others to be on your side. You have to fight.  

03/07/2013 Thursday

I met with the social worker from Hospice today. Hmmm, not a good thing. The people promoting the Hospice company over promised on what she could deliver.  So, I am still in the same boat and sinking fast.  I only got to see mom for a few minutes today. I had to spend all the time I had with the social worker.

The rest of the day I spent making calls trying to find her a bed somewhere else, and contacting Medi-cal 866-262-9881, to change her address. What a nightmare.  We’ll see if the form MC 306, I filled out will work. I faxed them my POAs and my drivers’ license.  I’ll call them tomorrow when I have a spare hour and see if they got the changes made. Then I will be authorized to ask for a package to update so I can keep her benefits current.

I have to go to Social Security soon to change the address there. I have a change of address at the post office but that only works sometimes and lasts a few weeks. 

03/06/2013 Wednesday

I call all the facilities in the area and even reached out to one in Santee. There is a slight chance that there is a bed available there. Well, that turned out to be nothing. 

03/05/2013 Tuesday

I spent 30 minutes with the hospice nurse getting up to speed about the way they work, etc. She wanted to be sure I knew that mom is dying and that I need to let her do it. OK, great, like I needed to hear that.

I told her my ONLY concern right now was to get her to somewhere else where she did not hate her room so that she could die peacefully.

I placed another call to Department of Health to check on the status of my grievance with Palomar. I reminded her it will be 30 days on the 7^th. The hospital wrote me a letter and said they needed 30 days to get back to me.

I emailed Cristin Severance at 10 news today.