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.
Take A Deep Breath
Take a deep breath Terry, relax, breathe deep. Smell the stale coffee!!! I got a call from the lady…
Take a deep breath Terry, relax, breathe deep. Smell the stale coffee!!! I got a call from the lady today who is supposed to start Monday. She started off by stating she had questions.
Oh no! She isn’t going to take the job. She has changed her mind! Just when I was about to relax and enjoy the extra help.
She had questions. You see when she was here before Al was a whole different personality. He got angered easily. He could have a very smart mouth, and there were many times he wasn’t so pleasant to be around if he wasn’t getting his own way. Kind of like a kid throwing an adult temper tantrum.
But the illness changed him. He grew weak and his voice softened. He turned mushy and cries a lot. She wanted to know if he stayed in his wheelchair much. She was questioning exactly what she would have to do for him if I left and went to a store.
I understood exactly her alarm and I explained to her how Al is today. Pretty much bed-bound. Eats in bed, watches TV a lot, sleeps about 16 hours per day.
All she could say is WOW, he sure has changed. I said, “Yes, an illness has a way of getting a hold of a person. You will be surprised when you see him again.”
I don’t think she is 100% satisfied but she did say she was still coming Monday. She just wanted her questions answered. I added that I would be here at first with her until she felt comfortable. I told her I would never leave and just throw her to the wolves. I heard her breathe a sigh of relief.
So I am going to relax, take a deep breath and realize God sent this person, end of story, well I can’t help admitting that I will feel better once she rings that door bell.
Today Al was cranky this morning. He is having more breathing issues. A labored breathing when he is active in any way. I used to hear it off and on but it is pretty regular now.
The Hospice nurse came today and I did tell her about the incident with the shower girl. I also voiced my thoughts on my fear of losing her and not having a shower girl at all.
I called the local Hospice here in town. I was quite disappointed to tell you the truth. I am still weighing the pros and cons but I didn’t like that they didn’t offer any short-term respite and that they had no Hospice House like Al has available to him now.
In fact the more she spoke, the more I shied away. She told me that if I felt I needed a respite break that bad, she would have him admitted to a local nursing home. My breathing stopped, my heart raced as I quickly thought back to the six months he was in a nursing home.
There are three nursing homes here in town. One is supposed to be high standard, that is the one Al was in, and we all know that didn’t work out at all. Another one doesn’t accept Medicaid, so that is automatically out. The last one is a place where you place people whose family doesn’t want them, or there is no money what so ever. I think you can vision what kind of care he would get.
In fact, it is a proven fact that a few disabled and mentally challenged people who enter never come out again. This is the biggest reason I keep Al at home. I love him, he is safe here, and he is in his familiar territory, plus he is never alone.
I will never unless I lose my mind or become so ill I can no longer care for him let him go back to a nursing home even for a respite of five days.
I was a little surprised at the fact that the director made the comment that if I felt I really needed a break.
My gosh, I take care of everything that has to do with Al. This includes meals, cleaning, changing clothes and bed linens. Grocery shopping, doctor appointments,lifting, guiding, aiding, helping, rolling him over, finances, and with his illness it has turned into a less than peaceful night so my sleep is interrupted, but I will march on like the woman I am. Not giving in nor giving up. God will help me do this and if I get too weak like I have been of late, he will send help,which he did.
Daily Prompt; Google and Rescue Operation
What was the last…
What was the last thing you searched for online? Why were you looking for it?
Photographers, artists, poets: show us SEARCHING.
Wow, this is an easy post. The last thing I searched through Google was Hospice. Makes sense doesn’t it after what happened here this morning.
Hospice is for patients that want to remain at home and who are dying within a short time. I am learning quickly that although Medicare governs Hospice, the group working within each area can be quite different.
You have firms that have loving people who really care about the patient as much as they do themselves. Even in one group, the shower gals, there are wonderful, take their time people who give patients showers. Then there are those others who want their paycheck. They rush into your home at the last-minute, rush the shower, leaving you, the care giver, wondering if they just sprayed water over the patient.
Hospice is a wonderful program. It keeps many patients out of nursing homes and in the comfort of their own bedrooms and beds. Family and friends always feel more comfortable visiting in a home setting, especially one they have visited in many times before. When you think of the cold nursing home room and the ever-changing staff and the lack of personal touch, most of us would prefer to die in our own familiar territory.
I guess what it boils down to is compatibility. Hospice, staff, patient, family and care givers all agreeing on the quality of care.
This is actually what Hospice is. My job is to get the best help for my brother that special heart to heart bonding and caring attitude. This is why I am looking else where. To me, when someone you love is dying, the waters should be calm, the voice low, the joy pure, and the best memories in the making, resulting in peace and tranquility.
The word “hospice” stems from the Latin word “hospitium” meaning guesthouse. It was originally used to describe a place of shelter for weary and sick travelers returning from religious pilgrimages. During the 1960’s, Dr. Cicely Saunders, a British physician began the modern hospice movement by establishing St. Christopher’s Hospice near London. St. Christopher’s organized a team approach to professional caregiving, and was the first program to use modern pain management techniques to compassionately care for the dying. The first hospice in the United States was established in New Haven, Connecticut in 1974.
There are more than 4,100 hospice programs in the U.S., Puerto Rico and Guam. The majority of hospice programs are Medicare-certified. In 2008, over 1.45 million individuals in the United States received hospice care*.
Hospice is not a place but a concept of care. Eighty percent of hospice care is provided in the patient’s home, family member’s home and in nursing homes. Inpatient hospice facilities are sometimes available to assist with caregiving.
Subconscience, what a long word. Not easy to say, and least of all not easy to understand.
Subconscience, what a long word. Not easy to say, and least of all not easy to understand.
My mind usually is spinning before it is connected to the fact that my eyes are open and I am sitting on the edge of the bed.
I wonder if that part of my brain parties through my sleep mode. Does the real truth come out?
Is what we say in our dreams really matter?
How many times is the truth that needs to be told hidden so deep within, that sometimes therapists can not even hold their breath long enough for the information to surface.
I know for me, the past three to four days, something has been going on inside my head while I am resting. Am I really resting though, or literally taking a break from stress and worries?
For the last few days I have had dreams where I wake up and am crying. I even took a nip at the Take A Nap bottle today, and when I awoke, my eyes were wet from tears.
What is it that is going on? Someone inside of me knows the truth, and yet I am still the last to know.
I dreamed one time I was married but had a ball and chain around my neck. I know that I am lonely for companionship of a nice guy, but I never really ponder on marriage. I know that if I had to remarry my ex, I would run quickly a way dragging that added weight with me.
I dreamed another time that I was divorcing something. It wasn’t human. It was ugly and huge in my mind. I remember crying because it woke me up. Whatever it was, it wouldn’t let me go. It was like a fierce ball of fire and no matter which way I turned it followed me.
I have been doing one thing that I thought I was healed from. Waiting for the boogey man to get me. When I was a very young child, and I was abused, it happened through the night hours.
There was also another time that made me afraid of the dark. I don’t know if this is what I have made me believe or if the reason was real. I can remember when I was brought back by the Welfare Department when I was around three years old I had to be very good and also quiet.
The motto for me in those young days was, children should be seen and not heard.
I can remember being put in the coat closet for a couple of days. Now my memory tells me that my Grandma said I was sick. I had chicken pox or something and darkness made it go a way.
All I know is that I was scared. I can remember it like it was yesterday. Sitting in the dark closet on the carpeted floor. Feeling the material of coat sleeves and scarves touching me. For years and years, I was afraid for it to get dark outside. I always thought the boogy man was coming to get me.
I have reasoned with myself so many hundreds of times. I told myself anything that would get me through the night. I would say things like
You are too ugly, no one would ever want you. You are too heavy, no one would stay at the window and stare at you. As soon as it breaks daylight, I can go to sleep.
I used to sit up with a knife in my hand when I was married and my husband worked thirds. I would stay up all night until I heard the birds sing then I could sleep. Finally I started having my daughter sleep with me. She replaced the knife.
When things got so bad that I thought I was going insane I sought help. This took a long time but I did get better. I am usually not bothered with the Boogy man anymore until recently.
I don’t want him back. In my reality I know that the friction of what happened this past weekend has done more damage to me than I thought. Dreams and Boogy man all come back.
I must be tired, in fact I know I am tired. I find myself taking naps more frequently. I have spent many hours on the phone making calls trying to get an XL size commode here for Al.
Medicare bought one for him last September, so now they won’t get him one for now. He has to have it. There is a weight limit to be able to get the bigger size and Al isn’t at that weight.
I am desperately trying to find this so I won’t have to clean up every time he potties. I am also trying to find a Lift Chair for him. With him only able to stand for a few moments and take about three steps before he is down, I thought a lift chair would be perfect.
Guess what? Another wall to run into. In order for Medicare or Medicaid to pay for one of these, he was to be able to walk with at least a walker.
I wish now that I would have given up on the Title of Help Pay This Big Bill and instead ask you to help me with donations for a lift chair. I don’t know the answers anymore. I just know that I am bumping into walls higher than I can climb.
I think in my eyes this is the beast that represents divorce and tears and the boogy man. Al wants to come home. I want him to come home. I want him to feel loved. He needs to feel loved.
I am tired of crying in my dreams, but can’t shed tears while I am a wake. I am tired of restless nights. I have made progress, and I am very thankful, but yet this shadow hovers over me.
Today I was able to get a hold of a company that will provide Al with his briefs,(adult diapers), bed pads, and gloves for me. His hospital bed and wheelchair have prescriptions now waiting for his return. He was let out of his cage and back into his room. This is all progress, right? So what am I worrying or stressing about?
If God wants him to have an XL commode and a lift chair, he is going to have to supply it. This is all I know anymore.
|Part of Speech:||adjective|
|Definition:||innermost in thought|
|Synonyms:||hidden, inmost, inner, intuitive, latent, mental, repressed, subliminal, suppressed, unconscious|
I feel so trapped. I want Al to come home for so many reasons. Most of you know why it is better for him to be here.
When Al went to the nursing home he had money of his own. This was by law made to pay his room and board while he was in there. When he ran out of money, then the facility applied for Medicaid on his behalf.
I had not worked with this part of Medicare and was being led by shadows trying to understand. There were many papers that had to be filed. Bank papers had to be submitted. Medical papers had to be proven.
At this one particular bank I had opened it myself. It was a credit union and in order to have a checking account, you first had to open a savings account so the two accounts could link. The money used was mine but the account had to be put in my name and Al’s name since he was going to have a checking account. No savings account, no checking account was the way it worked.
When all the paper work had been turned in Medicaid noticed that I had not turned in the savings account. I didn’t deliberately keep it from them. I just had always considered it my money used to open his account. That money was never touched and it had the minimum in it to keep it alive.
Back in February I got the notice and was forced to turn that account over although I explained it was just my savings to link to his account. It didn’t matter to anyone what I said. Al’s name was on it and that’s what counted.
Now today I find out that he is no longer liable for his stay there but the January bill which the facility thought would be covered my Medicaid was not, because of that savings account, it was now over limitations to qualify by $8.00. For an $8.00 over limit he is now responsible for almost $7,000.00
Now we are responsible for $6800.00 that was charged for January. The facility is blaming me. She told me on the phone that although Al is no longer responsible, I am supposed to still continue to give them the money that I have been giving them monthly.
The facility was getting paid by Medicare and also keeping the money that I was paying too. These past three months I thought the money I was giving them was paying off that big debt, but they were using it, or keeping it until the letter came stating he is now no longer responsible. She told me Medicare demanded that Al still pay the amount until the approval came through. They could have been placing that monthly check on his debt, but they didn’t. This was their choice too. Yes, he had to still pay but they decided what to do with it. That bill would have almost been half paid off and now it is still a full debt.
So now Al is actually entitled to keep his money but has to pay back January. But, when he comes home he will need things here that he would have received there, and this facility still wants that money.
So now I am not working so I can care for Al. He will come home with needs that I won’t be able to use his funds for and I just don’t know what to do. As long as he stays in the nursing home, the debt is being paid off. When he comes home they still want the money.
I usually don’t discuss bills on my blogs but I am sick at heart. Do I leave Al there not cared for properly in order to pay the bill? He wants to come home so bad and I don’t want him to die there, so I want him to come home too.
I wish I knew how to raise that kind of money for him. Although I am not responsible for his debts I can not afford this either. I would have to leave him there about seven months in order to pay it off. I feel terrible because I am bringing a dollar bill over Al’s life.
All I can think of is I can’t afford all his needs when he comes home without me having to go out to work to make money since they are demanding the money even after he is here at home. So then why have him come home if I can’t care for him. Oh I wish I could zap up the money somehow.
I keep going back to the beginning when they demanded all of Al’s money until he was broke. They know without a doubt he has no money. I was going to continue to pay his funeral bill until he came home and then let his monthly check pay for it. Now I am in fear of him even losing that big amount that we have paid his prepaid funeral. I already tried checking into cancelling the bill but he would not even get one tenth back.
What am I going to do? How could I ever tell Al he can’t come home? How am I going to pay off this huge debt if he comes home? I am sick at heart.