The day to day adventures of a girl who refused to give up her dream!
Thursday, September 19, 2013
My Mother's Medical Nightmare Part 3
I pick up this story when my mother moved upstairs to the "long term care" floor. Really, this is where the majority of the Alzheimer's patients live. It's sad up there. There is a different vibe, and you have to get a code to get out of the locked door. I had hoped this was going to be very temporary, but I was nervous.
In these meetings with nurses, we made a lot of care plans for the outcome we wanted but you still feel like you are in a trap. My mother was nowhere near being able to care for herself and if we wanted a successful home coming, she would need to be practiced and able to participate in her care. So, I said "What is the problem with her using the toilet?"
I spoke with the nurses first thing as I was going to have to get to know a whole new set of nurses. Now, I have to tell you, those nurses on the rehab floor were really good. I only had one bad run in with someone in three months and she was reassigned. They were just really compassionate and good at their jobs.
So, I kind of expect the same thing on this floor. But we don't get it.
My mom is still supposed to go to therapy every day and keep getting worked with and keep making progress.
And they begin to "threaten" us now. The threat has always been there but now it is more pronounced.
"If your mother doesn't show measurable progress and is not displaying adequate initiative, then we will have to report her to Medicare as uncooperative and they will cut off the rehab."
So, my mother is not really allowed to have a bad day or be cranky. The uncooperative label is a big deal.
I tried to back off the bathroom issue after and ugly incident with her. Clearly she needs some control and her daughter bringing it up is bothering her. She won't talk to me about it. I try to go and have a conversation with her and she tells me the discussion is over and turns up the television so she can't hear me. I think, my mother is now a rebellious teenager and I guess this is how I behaved with her.
I go to the nurse at the desk who is new to me and I explain to her that my mother needs to be out of diapers. She is not incontinent, she can easily be trained to go but I need her help.
I'm going to call this nurse Jane.
Jane says to me "No problem! I will start right away and put a note in her chart. We will have her bathroom trained this week."
And I believe this will happen. And I don't bring it up with my mom because I want to be her daughter and not pester her and step on her dignity.
I don't bring it up for the next three visits. I assume it is happening because I was assured that it would happen.
I check back in with Jane after three days when I see her on the floor.
Jane says "It's going great! She gets up and goes now, she lets us know when she needs to and she is doing terrific."
I am completely encouraged until I find out this is A LIE. The next day I am with my mother and a nurse's aid comes in and brings fresh diapers. I look at them and say "But Mom, I thought you were using the bathroom."
"No, I haven't."
I am confused. She confesses to me that she has not tried and they have not asked her to-- not one time. I am now furious but I can't find Jane anywhere to confront her and ask her to explain. I go right to the head of nursing and I tell her my story. She is very understanding but she says "Well, I wouldn't say she lied."
NO. She lied to me. She lied right in my face. There is no gray area here. That woman told me a complete lie. But I have now thrown an epic fit and insist that they deal with it.
Now my mother digs her heels in and refuses to go. She won't even try. They are all now legitimately trying and we have talks with her and she refuses.
I realize that she is VERY depressed. She is terrified of falling if she tries to get up and use the toilet and she has no control over any of this. So, this is the battle she wages. And she is going to win because if you take away the diapers, she pees the bed. No one can talk with her. And my father will not get involved or support us. He thinks she should be allowed to do nothing and he will be happy sitting in the room with her if she never moves or goes outside or does anything but watch Jeopardy at 4:30 every day.
This is NOT my mother. I have no idea who this woman is. This disease has robbed her of her dignity, her independence and her zest for life. This woman is terrified to try to use the toilet, she does not tell me stories or smile and there is no light in her eyes. I despair and spend days and nights crying and fighting.
I go to the nursing home and have epic battles and no one will support me.
Meanwhile, she is for a time still getting physical therapy and speech therapy. Every day, the Speech lady, who I will name Tammy and who I still do not like, who is still pessimistic and difficult, puts a stimulator around my mother's neck and sends electrical impulses to cause her muscles to contract so she can regain her swallow muscles. Tammy insists all the time that this is useless and will never work and my mother will never eat again. But I tell her that we cannot know unless we try and insist that we do.
My mother is scheduled for a barium swallow test in December of 2012. And in spite of Tammy's negative attitude, my mother passes the swallow test! He muscles are recovering! This is the greatest piece of hope ever. Tammy didn't want to work with her, she shrugged every day and told me my mother would never eat again and I should just accept it.
And within a few days my mother was eating oatmeal and salad. She was sitting at the lunch table and making progress. I am thrilled with any good news!
And this was all going well until PT labeled her uncooperative and announced she had hit a plateau and they would no longer work with her.
We go into another meeting with the nurses and I ask "If she is not getting exercise, how will she get better?"
They explain to me that my mother is NOT demonstrating any desire to do more than they are asking her to do. Really? But she is doing all that you ask, I say. And they say "She is not asking to do more than we ask her to do and therefore she is uncooperative."
Which JUST pisses me off.
So, they put her on "restorative therapy" which means that a new nurse comes once a day and asks her to move her arms and legs. She never gets out of bed and works on the bars or walks. And my father argues with them about this but there is not much we can do but argue.
I ask the lady doing restorative therapy to please get her up out of bed, that they are putting her at risk for pneumonia and she says okay but unless I am right there, she does below the bare minimum and my mother is now so depressed that while she does what she is asked to do, her energy level is waning. And they continue to let her go down hill. They tell me she cannot get back in full time PT unless she demonstrates initiative. How can you get a depressed person to want to demonstrate initiative?
SIDEBAR here. This is an important part of the story.
When my mother was first coming out of the ICU psychosis after being drugged to the hilt when she had three tubes draining fluid from her lungs, one of her doctors noticed she was not making a lot of eye contact and she had flat affect.
He decided she was depressed. Depression runs in our family. I have no doubt she was depressed but she had just survived a very traumatic illness and she HATES hospitals. The morphine had given her severe constipation and she had to undergo a surgical procedure where they dealt with her being seriously impacted in her upper colon.
This doctor decided to put her on anti depressants. He told me casually during an update conversation over the phone. This made me uneasy. After all the recent drug reactions, introducing antidepressants at this juncture seemed unwise.
"Did you ask her if she wanted to be on this drug?"
He hesitated, and I knew that he was making the decision to lie to me.
"Of course I did."
I said "I don't believe you. My mother would never consent to them."
Part of me thought she might need them but her mind was sharp, it was still up to her to decide that for herself. I marched into the hospital room, questioned my mother, who, as I suspected knew nothing about the antidepressant she had been taking for three days. The doctor had actually said "I think she perked up today because the antidepressant is working."
Did he go to Medical school? That is not how those drugs work. They have to build up in your system.
So, I paged the doctor, and made him come to the room and I said to my mother.
"please make your wishes known to him. This drug can be very beneficial to you should you decide to take it. it can help you with depression but this is YOUR decision. This drug is not necessary to your survival so it is up to you to decide."
She said very clearly, with some effort because an NG tube had been down her throat for over a week.
"I was not aware I was on this drug and I want you to take me off of it."
I'm sure the doctor was pissed off but I don't care.
Now, the conversation of antidepressants was coming up again in the nursing home. My father doesn't understand them or how they work so he thinks they and psychiatry are totally unnecessary. I begged my mother to at least talk to a therapist. She grudgingly agreed but it didn't happen. Somehow that guy just never stopped by...
I began to make plans to just get my mother home. I realized that this battle with them was only going to get worse and worse. There was no point in continuing here with this kind of terrible care. It was now January and they were making the least effort possible. My mother was in the bed full time and she got up for one hour at lunch on weekdays, I could not convince them to do more with her and all they ever did was blame HER for her lack of progress. I began to realize that only certain people called her uncooperative and that others completely contradicted this assertion.
In early February, I get a call from Tammy, the speech therapist and she says that my mother is refusing to eat, that she doesn't like the food. I say that I will cook something for her and try to help with that.
Getting someone off a feeding tube is a process. They have to relearn eating and they have to get a certain percentage of food to replace a tube feed. She was getting lunch every day and that was it.
My mother started to say she wasn't feeling well, she didn't want to eat, could they just put her back in the bed. I brought my mom some lasagna and she barely touched it. I noticed that she was having quite a few breathing problems and Tammy just kept insisting what a problem my mother was and how she was making the decision to be difficult and she was trying to encourage her to eat. But I could see that my mom was sick and coughing and not feeling well. Tammy refused to "hear" this and just kept telling me how treating her was pointless when she was going to be this uncooperative. The next day, my mother had an appointment with the neurologist. I had started going to all the doctor appointments with her and my dad. So, I thought I would ask him what he thought was going on.
The whole time, my mother was short of breath and struggled to do the slightest thing. I asked the doctor- "Am I crazy or does this look like pneumonia?"
Again, hard to tell with my mom because she doesn't present in a typical manner.
The neurologist said to me "She seems very sick to me, I am not an ER doc but if this were my mother, I would take her to the ER right now."
I'm going to skip the epic battle with my dad... there was one. He did not agree she was sick, and insisted she go back to the skilled care place, that she was just tired and needed to rest, that she had a chest xray a few days ago and she was fine. I have to tell you, though, when you know something in your gut, you have to listen. So, I lost that battle and she was taken back to the home. At which point, I marched up to the desk and found one of the good nurses who I had a good rapport with. I made her come with me and examine my mom.
"Tell me that her lungs are bad and I am not imagining this looks like pneumonia."
The nurse was immediately very concerned, she nodded and of course realized that this situation had been going on for a while and no one had properly noticed.
The nurse said "She needs an ambulance right now."
She explained all this to my dad who actually said the words "This is the first I am hearing of this."
It is exhausting fighting this hard all the time. It was indeed pneumonia. And it was bad. This was the last day she spent in this skilled care facility. It was February 7, 2013. I have no doubt that their lack of physical therapy caused this bout of pneumonia. I have no doubt they are more than culpable for what happened, this neglect and web of lies and incompetence led to this situation and now, my mother was right back where she started before she was ever in their care.
As a last note on this, when I went back to pick up my mother's things, I dropped by Tammy's office to let her know a few things.
I said to her "I need you to know that my mother tried very hard to cooperate with you but you needed to understand that she was too sick to eat, and you didn't notice. You were trying to force feed a patient with pneumonia. You missed all the signs that she will gravely ill and you blamed her. I'm telling you this so that you don't miss the signs with your next patient."
Tammy said "I still think your mother will never be able to eat normally and will be at risk for aspiration the rest of her life. You probably need to come out of denial about this. She's not going to get better."
I said "Did you hear what I just told you? She has pneumonia. And you didn't notice. As for her future, that isn't written yet."
Tammy shrugged and looked at me with the simpering, condescending look. She didn't get it- at all. What a waste of time. My mother made huge progress in spite of her negativity. Every speech therapist since then has been much more positive about working with her and future outcome.
I feel very sorry for Tammy's future patients. The woman is incompetent and I was very glad to say goodbye to her.
The next part is hospital and home-