I Wanted to Say, Don’t Even go There
Al was admitted to the local hospital this morning. I was told that since most medications they use have the reverse reaction for Al, they wanted to admit him so he had a bigger team to work with on getting the right combination of medications.
I just called up there to check on him. The nurse says he is very anxious. She was getting ready to go in and give him something. The hospice nurse is trying to talk me into having Al admitted to a nursing home after his stay at the hospital. I refused. I told her I had done that before and it was not a success because of the large lack of understanding and recognizing MSA.
She then tried to tell me it must be too much for me since I was saying I was too tired. That maybe a nursing home would benefit him. I got very offended. Of course I am tired. For two days he has not slept, so neither have I.
Getting the right combination of medications makes it easier for him to relax enough to sleep and then I get some sleep. Would I like to have more sleep? Yes, who wouldn’t? But I can go on fewer hours per day but I can’t go on two days with none.
I have an excellent helper who happened to have today off. I had asked Hospice for a volunteer to come sit with Al so I could sleep. I was told that volunteers can not change him or give him medicine, so I passed on that suggestion. I would have to stay a wake.
To me this all boils down to Al is contracting causing more pain. When the pain is out of control he is going to be more restless and less sleep. But I look at it as a temporary thing that can be fixed.
So no, I am not placing him. I am a good sister and a good caregiver. With my helper I will keep him at home until he passes. The nurse told me Sunday she thought he was passing. She thought he was having restless syndrome which is right before the death.
The nurse today told me she sees no signs of Al passing. That he was just upset because he was hungry. She said he may have a few months to go. I wish they would stop. Just stop guessing. My mind has no other route but to follow what the nurses say. To hear that he was passing automatically set my mind to thinking, oh my gosh, our time is so limited.
Then you hear he may have a few months. Oh good, he will be here for Christmas.
I want my brother with me for as long as possible. But if he is constantly going to be in pain, then of course I would rather have God take him home. Al was holding his arms up to the ceiling last night trying to grab someone’s arms in heaven. There is a big part of Al that wants to die, but I think this stems from the huge discomfort he is in. The other part of him is scared to die. But the other part of him is begging anyone who will listen to give him a shot so he can die.
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.
The Lump in my Throat
As I have stated before I am weak when it comes to people I love. I am writing this post to help…
As I have stated before I am weak when it comes to people I love. I am writing this post to help heal my heart so that I will be able to sleep tonight.
But this Hospice visit is different. He is there only for medication management.
The Doctor sees Al daily at least once per day. I know that Al has had bouts of pain issues, irritability, tears and sorrow since he has been there.
I know that they have removed the nasty drug he was on and replaced it with a more nasty drug. They have removed that one and started a new one twice now. They have doubled at times and changed at others.
Today he has not had any problems. He has had very little pain. He seems to be holding his own. So I have two issues going on in my head.
1. I always had this invisible line in my head. I knew at some point when Al is in the active dying stage that I didn’t care what they gave him. He wouldn’t care at that point. Life would not mean as much to him, nor his cars or coca cola. But he isn’t in the active dying stage yet. That is the next stage he will go into. So my issue is how does he have quality life now? How does he enjoy anything and how can I keep him so he knows who I am and what is going on? When does that line disappear and we go to comfort all the way at any expense?
2. I was so totally confident that he would be coming home tomorrow. The nurse and I just spoke on the phone. She said in her opinion he is ready to come home but it is up to the doctor and the doctor has to discharge him. Wow, what a disappointment in my heart.
But do I want him home and then he suddenly has to go back because his pain is not in control? Will he come home being so-called out of it? I must wait, it is the right thing to do, but my heart doesn’t like it. Rhino our cat doesn’t like it.
I know that they took Al off the nasty medication he was on here and put him on a different nasty drug with terrible side effects. Then they took him off of that when that didn’t work and put him on a new one. Then they had to double that dose because that didn’t work. Now today they have tried a brand new one. She said he seems to be better now.
I feel so bad for him. I know that when I am sick I just suffer like the rest of us and pray for the day I am better. For Al, he has suffered for a year now with pain getting worse by the month. How he must feel exhausted and worn out. How his spirit must sometimes feel like giving up, dealing with the aggravating pain and all the side effects of the medications.
A year and a half ago Al still walked. He didn’t need a cane. We didn’t need a wheelchair ramp. We didn’t have wheelchairs or hospital beds. He was able to go to the restroom by himself, feed himself, dress himself. Now this little bit of time later he is totally dependent on me.
He can no longer stand safely. If I do get him up he stands on his heels because his feet are so contracted. 90% of the time he needs to be fed. He wears briefs at all times now. He can’t ride his scooter or push himself in his wheelchair. He chokes at times. His breathing is usually labored at different levels. He has to be bathed and dressed. It is the fastest moving illness I have ever seen in my 23 years of medical experience. I hate MSA. If you look it up online you will see the terrible information that says they don’t know why these patients get it nor do they have a way to stop it.
I just wish I could do something to rid all of this from him. I know, only God knows the reason for all of this. I am only human but I have a very active heart when it comes to feeling emotions.
When she and I hung up I just wanted to sit down here and cry. My eyes welled and a lump in my throat appeared, but I know Al needs to be at some point of comfort before they will release him.
I can’t help it though. I miss him and still hope God allows him to come home tomorrow. I have such empathy for all patients that are terminally ill. I pray that when my time comes I just lay down and go to sleep. If I get an illness I hope it is short-lived.
Medications can help but with their strong side effects when you are dealing with several medications can sometimes do more damage than the illness but you can’t let him or anyone suffer in great pain either.
Well it helped me, the lump in my throat is still there, but the eyes are still moist. Let’s hope that Al has a nice Christmas, right here at home.
I want to thank Bonnie Llewellyn. She not only sent Al a card with cute little birdhouses and…
I want to thank Bonnie Llewellyn. She not only sent Al a card with cute little birdhouses and birds, she also sent me a card. For some reason she thinks I may be on the naughty list. I thought that was such a cute card and I thank-you Bonnie for making me laugh today.
I want to thank Renee and Ed, of Photographic Memories, LLC for a beautiful card they sent to Al. It is a blue and brown card with the three wise men on camels. It is gorgeous. Thank-you Renee and Ed.
I want to thank Marlene and Little Binky. An adorable black and white cat. It is a beautiful card with photos of Melanie and Binky. We love it and thank-you Melanie.
All who have sent cards I want you to know how much Al loves them. He holds them and looks at the pictures. I read them all to him as his sight is not that good any longer. He holds your cards for hours.
If anyone else still wants to send him a card, please email me at
for the mailing address.
I will never forget the kind gestures you have done to help make his Christmas brighter.
Al is still in the hospice hospital. They are having some issues on getting the right pain medications to manage his pain. I think the problem is his pain is bigger than the illness and all of the medications out there. They have tried different ones. They work and then they stop.
I am thinking he is coming home tomorrow but I am not positive since he is in there for medication management. Please keep him in your prayers. He has great pain in his shoulders, neck and feet as his body is contracting from MSA.
When I try to stand him to change him he can no longer stand on his feet. They are so contracted he ends up on his heels which causes great imbalance problems. This illness is not going to stop until it has caused every part of his body internally and externally to contract and stop.
I just hate watching this. With all the progress doctors and scientists have made they still do not have any kind of cure for this ugly and painful disease.
The only reason I am posting right now when I have a ton of things to do is so I can go see the Hospice nurse with a smile instead of a bitchy mouth.
Yesterday was just too awesome. Al was calm, no tears, not too many tremors. Why would I want to break the record?
Friday I needed medications from Hospice. I used to call the Triage nurse when I needed something, then Al’s Hospice nurse told me that I was getting her into trouble. I was to let her know personally when I needed meds. She even gave me her cell number which is a no-no with their staff. I guess it could cause an over-load of maybe non-emergency phone calls, and I get that.
So I called her last Friday morning. By late afternoon she hadn’t returned my call so I called the main office. I didn’t state why I needed to talk to the nurse because I didn’t want her to get in trouble. I also knew that at 5pm, the nurses do not answer their work phones. When that time of hour comes they are off the clock and on call nurses take over.
The office told me they would get a hold of her and have her call. I never got a call, not any part of the weekend. Now I am out of two very important medications. This is going to cause me grief and unneeded stress.
The office will call in an emergency supply at our local drug store here and then I will have to get out to get it, and it will be tomorrow when Al is not at Day Program so I am going to have to load him up in the car.
So this morning comes around. The shower girl calls and says she will be here at 9:30. At 10:05 when she is not here I call the office. The office says she will call the girl. I also mention that I have not heard from Al’s nurse. I also stated that I had left her a message along with the office leaving a message. I told her I usually hear from her by this time of morning. I was wondering if she knew Al was home. The office said she would call her.
Low and behold within five minutes the shower girl showed up at the door. Al was in tears. He was afraid he wasn’t going to get his shower. The girl had a trainee with her and they were laughing, but I was not.
I hate to see Al crying needlessly. It stresses me out. He has to get on the bus for day program at a specific time. The girl made a comment that she had car trouble and I said you could have called.
For me I have to make quick decisions. Although I am thrilled Al is home it doesn’t take much at all for my stress to return. Taking care of Al isn’t an easy job, especially alone. I have to decide, is anyone actually coming? Do I need to hurry and give him a shower myself? Should I call the bus company and cancel? Should I take him in myself after they arrive?
So I guess I was edgy. While they are laughing I am almost in tears like Al. Then the nurse calls with a bright Good Morning. She ask me how I am and I say alright. I tell her I am stressed right now but I will calm down.
She ask why am I so stressed this time of day and I explain the shower deal. She proceeds to explain that they give a time frame but they can’t always be on the dot. Maybe they run into crisis with a patient before Al.
I said I totally understood and explained how it puts me in a situation of feeling like I don’t know which way to go and I explained the process of the bus situation and all that I said above.
She became silent and then I decided to talk to her in person about the phone call I didn’t receive last Friday. I am patient, I understand that Al is not their only patient. But we are talking about pain medications that can not be stopped abruptly. We are talking about how I am now going to have to load Al up in the car to go to the drug store to get just one to tide us over.
All Al’s medications paid by Hospice come via UPS or Fed Ex. So now I have said it all. I feel better. I can go in and smile, but I wish I could get these people to understand the caregiver and patients side also. Life doesn’t always flow around the staff.