I Was Told I am JUST a Sister
I hope I don’t take more than one page to get out all I need and have to get out. This morning I…
I Was Told I am JUST a Sister
I hope I don’t take more than one page to get out all I need and have to get out. This morning I…
I hope I don’t take more than one page to get out all I need and have to get out. This morning I awoke to a nice calm morning. But things change as you know. We never quite know what each day holds out to us. I guess that is where we really need to count our blessing other than those big moments.
I was drinking my coffee and talking to some MSA friends on here when the phone rang. It was the Hospice Hospital. The doctor was on the other end of the line. She said that she was going to keep Al another 24 hours as they had made a few medication adjustments and wanted to make sure he would be alright.
This is cool. I would hate for him to come home a mess. So he is coming home tomorrow. The next few sentences out of her mouth began rubbing me the wrong way. Soon I was frustrated then I went from that to plain old angry.
She told me Al was doing real good. She explained how their nurse aide had said he walked four steps and had no issues. This is when I started to become frustrated. Al doesn’t take four steps here at home. In fact he does need to take three steps to get from his wheelchair to the shower chair but he gets very upset because it hurts his legs and feet so bad.
Al looks like he is walking on his heels because of his feet contracting from this disease. I see his heels and they are so red. I do try to get him to continue with this as long as possible because he gets so much cleaner when he gets a shower over a bed bath.
She told me that he became upset and angry over a football game last night so she gave him one of his new medications and that didn’t work; so she doubled the dose and then he became quiet.
Alright, I am just listening and not speaking as she goes on to tell me how amazing it is that he is so good. She then changes the topic to stating she had called Al’s regular Hospice nurse and that nurse tells her that Al really isn’t declining much. She says he is pretty much the same as when he started Hospice.
I think my eyes probably got big as my daughter always tells me when I start to get upset. She goes from there to telling me that I need to start remembering that she is the doctor and all I am is the sister.
She stated in no uncertain terms that I directly disobeyed her orders to double up Al’s pain medication and then I quit being quiet. I told her that I had went up to almost double the first time she wanted it upped on Thanksgiving Eve. But after I saw how he changed and he started hitting himself and screaming and cussing I was not doubling the dose within an hour as she wanted.
I explained that I did not want to see what damage he could do to himself over this. I asked her to try some other medicine but she was persistent even after Al was beating himself up.
So on the phone she was scolding me reminding me that I am nothing compared to her. Her next blast of words were that he isn’t declining for what he needs to be. She said she was having a meeting this Thursday with Al’s regular Hospice nurse, who already told her this morning that Al isn’t declining and she was 90% sure she was going to release Al from Hospice.
My heart sunk. I know what I see here. He has gone from five days at Day Program down to two half-days because he is declining and becoming weaker. He is almost 90% bed bound except on Day Program days.
He can no longer stand more than a few seconds and when he does it is on his heels because of his feet contracting. He has to be fed liquids and foods about 75% of the time. Last month he could still feed himself most of the time as long as it was finger foods.
His medications have been changing all the time because pain continues to get worse. His entire body is contracting. His head hangs on his chest. You can barely hear or understand what he is saying.
But according to the doctor he is not declining. She said that he will probably have a few more months to live. All of a sudden I was enraged. I felt although I can not prove it that this was to get back at me for not following her orders, since she did make that perfectly clear.
She stated that she would only release him if I promised to her in writing that I would follow all of her orders when he did come home until he was dismissed from Hospice.
All I could think of is I am going to be forced to place him in a nursing home. Why? Because it takes a lot of money to purchase briefs and pads.
They send a case at a time when they send his briefs. He wears two types, pull-ups for Day Program and tab types for when he is home in bed. He also uses quite a few chux pads. The bill is about two hundred dollars every couple of weeks. I can’t afford that at all. I already pay for what ever he needs here at home, food, clothing, anything that Hospice or Medicare/Medicaid doesn’t cover.
She said that she will let me know this Thursday her final decision. I hung up and sat here and almost started crying a pond of tears but I had to leave to go to the pharmacy to pick-up my medications for myself since Al will be home tomorrow I won’t be able to get out as easily.
When I went to the pharmacy the owners and I were talking about it and they told me to talk to the Hospice right here in town. I asked them, ” Why should I? If Medicare won’t consider him acceptable in another county, they won’t here either.”
The owner convinced me to at least try. Just run over there and talk to them is what he said. I grabbed some lunch because I had forgotten to eat breakfast in the chaos of things. Then I went over there.
I was very upfront and honest. I explained everything that had been going on today and for the past six month history. She asked me if the doctors had ordered gel pain medications and I said no, and she wondered why.
She said from everything I was saying he is declining and they accepted Al in their Hospice care. We hugged and I told her as soon as I got home I would call the other Hospice and tell them the new Hospice information, which I did.
Now I am in waiting time. Waiting for Al to come home. Waiting for the two Hospices to talk to each other for dismissal and admitting. He will still get three showers a week. He will get a nurse in this area for visits. I will even get home maker time hours for me. From what I learned they will send someone out to tidy up his room or something.
So I had no trouble calling the now Hospice. If I had to do it over again, I wouldn’t change a thing. I may be the sister but I know how he reacted to the increase of medication. Even the Hospice nurse that was here was shocked at how it was a negative reaction to the increase of meds.
I know in my heart this doctor is upset with me because I didn’t follow orders, but hey, this is a real person, and my brother. He is just not another case. So I am calmer now and this is good for all around. I made the right decision and as far as the Hospice Doctor is concerned…………she needs to remember why she became a doctor. You just can’t shut up noisy patients at any expense, pain is pain no matter what title you hold.
Yesterday was awful, last night was terrible. Al got worse as the day wore on. By last night he was screaming he was on fire. Tears never stopped and I could not seem to bring the pain down.
I ended up calling Hospice around 11pm. At 1am a nurse showed up. She could see his pain and she called the doctor on call. I had never dealt with this doctor and I swear if I ever see her face to face I will have my way with her through words.
She ordered the nurse to give Al double one of his strong pain medications. In less than half an hour Al went nuts. He was screaming and crying. He swore his body was going to burn up. He began to hit himself wildly.
I couldn’t take it. I made her call that doctor back. The doctor then ordered twice the amount of that pain medication. I said absolutely not, hell no, no way. Find another doctor. Well there was no other doctor.
She reported that I would not do as requested so the doctor ordered him to take an extra pill that he usually takes. It is a calming pill. It seemed to work and he fell asleep. He slept for half an hour then was wide a wake, like wired.
The nurse called another nurse and she went home leaving me to wait here with Al for another hour. By now it was after 4am. The new nurse couldn’t seem to do anything with Al. His heart was racing at 282 beats per minute.
It was obvious to me that Al’s burning body was due to the heart going wacky from internal tremors inside the chest wall lining. When the nurse could do no more she called that same doctor back.
The doctor ordered him into the Hospice House. The ambulance came and got him and left at 6am.
I went to sleep with tears streaming and slept for four hours. Now it is time to start final preparations for Thanksgiving dinner. All I can say today is I miss Al so much. I am dead tired, but I am thankful he is still alive on Thanksgiving Day. He may not be here physically with me but he is in my thoughts constantly.
Cold-Hearted Miss Priss
“You know Ann, my Mother-In-Law is just one big pain in the ass”
Blah, blah, blah
” She just wants…
“You know Ann, my Mother-In-Law is just one big pain in the ass”
Blah, blah, blah
” She just wants attention, so she bugs the hell out of us. She sits in that wheelchair and ask for anything she can think of. Honey can you get me my handkerchief? Honey, can you get me a cold glass of water? Honey, can you get me out of this hard chair and into something more comfortable. My tailbone is starting to hurt.”
Blah, blah, blah.
“You know Ann. She is just asking for pity. She better ask Marge to be her slave next time there is a party going on. Why, I could hardly mingle at the party. I didn’t go there to wait on someone who can turn those wheels herself.”
My brother had a doctor‘s appointment today. As usual we sat and Al slept in his chair. A woman with a matching outfit and purse plus jewelry walked in for her appointment. She was talking on her hot-pink cell phone and went on with her talk after announcing she had arrived.
I don’t consider it eavesdropping since she didn’t even lower her voice. I was ashamed of her. A woman with her social status, speaking like this.
At one point she looked at me and gave me one of those fake smiles and then glanced at Al. Her glance stayed on him as she chattered like a Barbie Doll. I leaned over to her and asked. ” Is something on my brother’s face?”
She looked at me and said, “no honey, I don’t see anything, why?”
“Oh I just noticed you watching him so intently, I thought he had a bloody nose or something. He is here to for an appointment also. I wouldn’t want to take him in if he looked less than presentable.”
She looked at me with that pasted smile and then went back to her conversation.
Soon the nurse came out to the lobby. She called Al’s name. I waited and Al didn’t move. The nurse called him again. Then I got up and pushed him to his room. I mentioned to the doctor that it was very difficult to get him into doctor’s appointments on my own. I asked him if he made house calls.
He laughed like Santa Clause, “Oh no, I don’t have enough time to make house calls. I believe that went out years ago.”
” Do you know anyone who may consider my request?”
The lady out in the waiting room, Miss Priss? I hope to God that when it is my turn to need help I don’t get any of her relatives as my caregiver.
What’s the best piece of advice you’ve given someone which you failed to take yourself?
This is an area in my life, where my biggest fear in my life shows. Health, yes, my health is the fear of all fears in my life.
I am the first one to advise someone to go to the doctor, to get it checked out, do not wait. With being in the medical field for so many years, I sometimes get questions about others health.
Of course, I am not a doctor, so I can not diagnose, but simple things, like remedies, or signs that I know should take your rear end to the doctor, I am willing to mention. With my own health, the caring of other patients for so long, as made me the total opposite.
You see, I have been on both sides of the wooden fence, and sometimes even straddle with one leg dangling on each side. I have seen the patient that has not felt well for sometime, finally they decide to go to the doctor, and find out they have a cancer.
This information blows the patients life totally apart. The thinking changes, the outlook on life goes from happy-go-lucky to sad and a time bomb waiting to go off. I have also seen the side of the patient who is dying.
I have had patients dying in my arms, and patients, that beg me to help them end their pain. I have cried with patients, laid in their bed beside them and comforted them while they are trying so hard to stay awake, afraid that if they sleep they will never wake.
I have seen what chemo treatments can do to a happy soul, desperately trying to live longer, healthier, whither a way right in front of my eyes. They lose their hair, they vomit constantly, causing the sick body to become weak very fast.
The worry and stress to family and friends, can never be totally healed, knowing now that their loved ones will leave sooner than later. Final arrangements are made for funerals, trying to squeeze everything in to their short-lived lives that they always wanted to do.
Visitors coming in to the home or hospital with sad faces. Spouses, going through their own hell as they come to realize that they are going to lose their life long partner. People whispering in the background, about what is going to happen to the homes, the personal items within the house, wills, money. It can go on and on up until the actual leaving of this earth.
I have seen too much, dealt with far too much a patient’s emotional roller coaster ride, to not want this for myself. I know that I am going to die. This is one area, that no matter who is President of the country, or no matter how rich or poor you are, we all are going to die.
When I took care of my father the year he was dying, I saw him go from a lively man with hope, to a weak vegetable, that cared about nothing. I can not do this. I can not put family or friends through this. I go to the doctor every three months to check my diabetes, and I will go to the doctor for infections, but I will not go for other reasons. Why? because I do not want to know.
There are probably many of you who will disagree with me on this, and it is alright. This is what is wonderful about living in a land of being able to make your own choices. What I do, is live life. I want to live until my death comes, enjoying my writing and my friends and family.
I don’t want anyone to come around out of pity or placing someone in a position of not knowing what to say. I often kid with people and tell them, you will know when I am sick, when I finally reach my perfect weight goal. Seriously, I just want to live my life as normal as I can, until it is over.
God knows my ending date. I can go to clinics and shove vitamins down my throat, and buy all of the latest exercise equipment, but in the end, when I ask myself, do I want to live to be 100? My answer is always the same, no.
I don’t want to live when I have to lean on someone. When I can no longer feed myself, or walk, or can not breathe without help of a machine, or be on the strongest dose of lasix, I want to go home to heaven.
Of course I can not control so many things about my own body, but I can try my hardest to live happy. I guess I can not say anymore on this topic that can close this topic out, we shall just have to wait my time out and see what God has in store for me, and then I can write my last words, and close this chapter of myself.
Today was the day that Al and I went back to the doctor for a recheck on his new medications he had been put on last Monday, and to discuss the numerous tests that had been done on him in the ER on Friday and last weeks labs that had been drawn.
We walked in and waited for a few moments and then Al’s name was called. He was weighed and now he had lost the four pounds he had gained and even lost two more pounds, making this the lowest he has ever weighed.
We then went to our familiar little room where the doctor comes to pay his visit and give you his infinite wisdom. Al’s vitals were checked and then the doc came in and sat down and was all smiley.
I had a list of things that the home health care nurse had given me to ask, so I started the conversation first. The doc didn’t really respond too much, did a lot of smiling, made one adjustment from what the nurse had stated. He also said that Al would be checked for cancer the first week of December on his enlarged prostate.
Then the room became silent. It was like when you are in a group of strangers, and all the surface talk has been played out, then what, silence, until someone speaks. This was the way it was here also, then the doctor spoke.
He said that he was very shocked that the test results did not show that Al suffered from something else besides Parkinson’s Disease. He said that he was so sure that Al could not be in this much pain from this illness, but he was wrong. All the labs came back negative from every kind of bug or arthritis or anything. The only thing that proved him wrong for sure besides the tests, was the brain scan that the hospital had shown.
Al’s brain is consumed with Parkinson’s, and yes he is suffering. The wiring in his brain is being cut off from the death of cells. He said that whatever we wanted to do , it was fine with him anymore, just tell him what would make us happy.
I looked at him and said nothing. Al said what did he say?, and I said, the doctor wants you to be happy. Al said, oh ok. For now we have postponed the Pain Clinic appointment, and are going to continue with his new medications, since it has taken away some of the tears and talks of death. Other than that, there is nothing.
As we walked out, my head was low just like Al always carries his. Al didn’t get anything the doctor said, and I understood too much.
The doctor came in and before he sat down, he shook Drake’s hand, and then sat in his chair. He told them that the surgery had been a success. He had been able to relieve the pressure from Dahlia’s brain, and she was doing fine. He expected the pressure to keep releasing throughout the next several hours, and that she was still a little groggy, but in about an hour they could go in to see her, but only one at a time, since this was a brain procedure. He didn’t want her to get overly exhausted, so keep the visits short.
Everyone got up and started hugging each other and patting each other. They each took turns shaking the doctor’s hand and telling him what a good job he had done, and that he was the best in the world. The doctor said that he had to get back to work, and that each of them could now return to the lobby, or go get something to eat and come back in a bit.
With saying this, the doctor walked out of the door, leaving the door open for them and they followed him and all went to the lobby, but no one wanted to sit down. Excitement filled the air, and suddenly everybody was famished. They made arrangements to meet at a local restaurant and so the ones that were driving, piled everyone in and off they went to celebrate.
Drake did not go directly to the restaurant, but went back to the house, to get Drew, who needed to know how the surgery went and to be a part of the celebration. When he entered the house, it was quiet, but he found Drew in the living room, sitting in one of the chairs watching out the window.
Drake went to him and told him the success of the operation and Drew grabbed a hold of his brother and wept and muttering congratulations. He started to say that ever since he messed up, causing so much grief and pain for Dahlia and the others, that this would have been a fair punishment, if something had gone wrong with her, but Drake told him to be quiet, to not talk like that. He in no way blamed Drew for anything, it was the illness, not Drew. Now let’s not talk like this and instead celebrate. I have come to get you and you are going with me to meet the others for lunch. Drew didn’t fight it, and dropped his pity party, and the conversation was left alone for good.
They met up with the others, and they each ordered. This was a place no one came to often, so the ones seated next to the blind ladies, helped them to decide what they wanted to eat. In no time at all the food was delivered and everyone dug into their plates. They had all pretty much ordered the same things, hamburgers, fries, and shakes.
Each were exclaiming how good the food tasted, that they had not had this good of food in a long time from a restaurant, but deep down inside, they all knew it was such a relief of the stress from the operation, that even a bowl of soup would have tasted fantastic.
As they ate, they talked about Dahlia and then they moved on to the topic of the wedding, and then the discussion was brought up about food. No one had the time to even think about the menu, because they all wanted to get back to the hospital, but they promised as soon as Dahlia was home once again, the menu was going to be the first on the to do list. After all, the wedding was coming up in a month and a half, and there was a lot of preparations that needed to be done yet.
Ralph and Rachel decided for this celebration of good news, they would pay for everyone’s bill, and so the others left the tip for the waitress. They stood up and walked out the door, and it was such a wonderful thing to see if you were a passer-by on the outside looking in, plenty of smiles and happy faces.
They drove back to the hospital and they all went into the main lobby. No one was in there now, and even the television was off. The receptionist saw them coming in and told them what room number Dahlia had been moved to and that they could each go in and see her, but to keep it short, doctors orders.
They wasted no time and went to the elevator, and pushed the number three button that would take them to the medical floor. Drake and Rachel were the first ones to enter the room, and the others remained in the small sitting area for their turns.
When Drake looked at Dahlia, his eyes got very big. He was not prepared for the bandages and gauze that was wrapped around her head. Her face was swollen and pale. Her eyes were closed and she was lying very still. Rachel walked over to her and laid her hand over Dahlia’s arm, and she felt warmth, and she turned to Drake and said it is alright Drake. She has been through a big ordeal, and she is just resting.
Drake walked over to her and stood next to Rachel and just watched Dahlia sleeping. Although her face was swollen, he still thought she was the most beautiful woman he had ever seen. Dahlia never stirred and so the two of them turned around and walked back out of her room, giving a chance for the others to visit.
With the looks that were on Drake and Rachel’s faces, the others became concerned that not everything was alright. They stood up and went over and began to ask questions, but Rachel assured them all was alright, that they were not expecting to see her in the condition that they saw.
One by one, each went to pay a visit to Dahlia, and the last visitor to pay a visit was Ralph. He had heard so much through the chatter of all that had seen her, that he wasn’t sure what he was in for, but he walked into the hospital room and saw Dahlia lying there. She just looked like she was asleep.
He slowly walked over to the bed and looked down at her. He was relieved that she did not look as bad as the others had said. He walked then over to the chair and pulled it up to the bed and sat down. Then a nurse came in and took Dahlia’s vitals and checked the IV to make sure the drip was going at the rate it was supposed to be, and she smiled at Ralph as she started to turn around and leave, and said Dahlia is doing fine, don’t worry, she should be waking up anytime from the anesthetics.
He was watching out her bedside window and then would glance back at Dahlia, thinking how fond he had become of her over the months, and Drake had made an excellent choice in his wife. He would be happy to have her in the family.
The doctor poked his head in then , and was just checking the reports of what the nurse had written, and then nodded to Ralph and turned back around to walk out the door. A stirring came from the bed and for the first time there was movement coming from this life.
She was coming around, and he sat up straighter in his chair. He knew that she could not see him, but he wanted her to know that she was not waking up alone, so he reached out and touched her arm, to let her know someone was there with her.
The nurse was walking by and peeked in and saw that she was stirring and so she was going to go catch the doctor and let him know she was waking up. Ralph coughed and a few tears were coming down his face, as he was so glad this part of her life was over, and from here on out, it was only going to get better.
Ralph spoke to her, hoping that she could hear him, and the tears continued to fall. He was telling her that she had come through the surgery just fine, and that she was going to be alright. She was a real trooper and had been such a great patient. She stirred some more, and then a few noises came from her mouth. Yes, she was definitely waking up.
He began to remove his hand from her arm, and her eyes opened up and she was blinking them rapidly. She stirred some more and then took her hand and laid it over his arm, and she spoke.
She told him with a groggy and soft voice, it hurts, it hurts. Ralph sat closer to her and tried to understand what it was that she was saying, and so he leaned in close and said I am sorry, I could not hear you, can you tell me again what you said? Dahlia repeated herself again, it hurts, the light hurts my eyes, cover my face.
Ralph’s mouth dropped open, and his heart began to race. She said the light hurts her eyes, the light hurts her eyes! Oh my gosh, the light hurts her eyes. He jumped up and patted her hand, and told her to stay right there, that he was going to go get the doctor.
He went out her door quickly, looking both ways for the nurse, and then found her and told her what Dahlia had said. The nurse in reply went to get the doctor and Ralph almost ran to the waiting room where all were seated. He poked his head in the doorway, and with a big grin on his face, he said, she said the light hurts her eyes!
Drake’s name was called by the nurse, and David walked with him back to the little room where the nurse took his vitals. His blood pressure was up a little but not to the point of alarm. After several questions, the only thing Drake complained of was a slight headache and a sore neck.
The nurse took him back to the room where the doctor could take a closer look at him, and then David was checked out next and waited in the room next to Drake. When the doctor opened the door and came in to see Drake, he asked him about the accident and how Drake had felt at the time of impact. Did he suffer any dizziness or blurriness, how much pain did he feel. Drake said that he had a slight head ache and that his neck hurt. The doctor ordered a cat scan on his head and neck, and then told him he would be back with the results.
After leaving Drake the doctor went in to see David, and after talking to him, found out that he was alright. No need to do any testings. He had been a lucky man the doctor had said. He dismissed David and went to see other patients waiting for him, and when the tests came back he went back to Drake’s room. He stated that the test had come back alright, with no problems. He may suffer from a little neck stiffness, and he had brought with him a neck brace, and wanted him to wear it if he felt a greater pain. Whip lash was something that Drake could experience as the days went by. Other than that, he was going to dismiss him also, unless he had more questions. Drake asked if the doctor knew anything about Dahlia, and the doctor said, to go wait in the main lobby and he would have him called back when they knew more information.
David and Drake found themselves both waiting out in the main lobby. Time ticked by so slowly as they waited for someone to call his name, but no one came nor called out to them. It was getting late in the afternoon and David asked Drew if he was getting hungry.
Drake had not really thought too much about food until the word was mentioned, and then he decided he was rather hungry and could use something to eat. Both guys went to the receptionist and told her they were going to go to the cafeteria. If the nurse was trying to locate them, please have them paged at once, and they would return right away.
David and Drake found the cafeteria and ordered some lunch, and after paying for it they found an isolated booth and sat down to eat. The talk was light, finding out about each other, what did they do for a living, finding out that they lived in the same vicinities. Other than that, it was pretty quiet between the two, Drake anxious for news and David wishing someone would call over the PA system.
They finished their lunch and not being able to sit still any longer they got up and wandered through the gift shop and Drake found a soft, cuddly stuffed kitten and he wanted to get this for Dahlia. Together they left and went back to the waiting area. Drake went to the front desk once again, asking if anyone had asked for him while he had been gone, and the answer back was no, I am sorry, no one has been looking for you.
They both were sitting and watching the television and then Rachel and Ralph and some of the ladies from the house showed up and were asking a lot of questions. Rachel stated that she had just been informed by a neighbor, and she was upset that no one had come to them letting them know that there had been an accident sooner.
Just then, the nurse came and called Drake’s name. She asked him to follow her back to a little office where the doctor would come talk to him now. Rachel grabbed his arm and asked if he wanted her to go with him, and he nodded yes, as he had just became aware of a knot rising in his stomach. Like being called to the principal’s office in school for being naughty.
The two walked back and sat down in a small office, that only had enough space to hold a desk and two table stands with light, and two chairs, and of course, the doctors chair. They only sat there for a moment, when the doctor walked in and they both stood up and shook his hand. Drake introduced his mother and then asked how Dahlia was.
The doctor opened his file he had brought with him, and acted like he was seeing it for the very first time. He began by saying that the accident had flipped her head back and forth a couple of times too many, and had caused nerves to swell in the neck and head. There was some slight swelling in the brain, and this had caused her to go into a coma. She was still asleep and had not woken up as of the last time he went in to check on her.
Drake rubbed his neck and then his forehead, waiting for more information. The doctor said that the swelling was not too bad, but yet it was more swelling then he wanted to see, so he wanted to take her into surgery and drill a tiny hole in the top of her head to relieve the swelling.
Drake started crying like he had just heard the words dying, and Rachel let out a gasp, as she had never heard of such a thing. The doctor went on in his calm voice, asking if one of them could sign papers allowing this procedure to be done. Drake said that neither of them were related to her, and that her father was the only one that they knew of that was a relative, but he was home bound and what were they going to do now.
Drake explained that they were going to be married in a month and a half. The doctor sat for a while and did some thinking. There was nothing he could do, there was no one to sign papers, and yet he could not let Dahlia lie there at risk. He once again spoke, and said that he was going to go ahead and do the surgery if it was alright with Drake, and Drake replied if it will help her to live, please, please do it. Go do it now.
With that the doctor left to go let the nurses in OP to get ready for a patient coming in and he left two people, a mother and son holding each other trying to comfort away the dreaded word of surgery.