First I would like to say that anything you read in this post is not to cause controversy, it may strike feelings of hurt, disappointment or anger. Please know that this post is to share the raw and the real. To share how I am processing my disease, how I survive another day.
The people that care for me deserve the utmost respect and I will not tolerate any comments that disrespect them.
Please read this with an open mind and understand that there will be more than one topic covered. I have a lot on my mind.
For the past week or so I have reflected on my situation and thought about how I would put it into words.
Not many people understand exactly how I live my life currently. What does that mean exactly?
So of course I wake up, wince in pain, wait for someone to adjust me so that I can communicate and then I will work on the challenges with pogo.
Last week I was released from the hospital and realized something I wish I could change.
I don’t just live a normal life, I can’t be left alone and there is nothing I can do for myself without someone managing how I breathe, eat, go to the bathroom, move, take medication, everything is managed.
There are days I wish I could just do… Do what I want without debate, explanations or education on why my decision is not a good one.
Yes, I always have the final say but not without a battle. There are rules and regulations that have to be followed because without directions from a licensed professional, I am risking the licensing of those that care for me. It is a hard pill to swallow and I feel the leash getting tighter and tighter the more I progress.
I can’t just live my life to the fullest without explanation. I don’t expect those that care for me to bend the rules.
The rules they have to follow are so unfair to them because I am confident that if they could they would allow me to live how I would like. Please know I have the AMAZING team of nurses and CNA/PSS. I have a WONDERFUL primary doctor and a REALISTIC neurologist and a very UNDERSTANDING palliative doctor.
I wish I could just have a standard order that says,
Please allow Tammy to choose how she wants to live her remaining life and you will be legally protected.
Unfortunately it doesn’t work that way. So if I don’t want any medication at all tomorrow except my vitamins and relyvrio. I would have to give a reason, I then would need to be educated and finally there might be a call to my provider to inform them. All which I would fully expect.
Unfortunately when you are terminally ill and under the care of medical staff there is no more freedom. It is difficult for everyone involved.
How does one get immunity from the rules and just live as normal as a life we can. Some days I just don’t want to do anything, like share how I might feel. I feel like when I do share I am then witnessing people trying to figure me out or cure me.
I think I am past the point of figuring things out and doing things the way I have been doing even if they don’t work because I am tired and I feel comfortable with the choices I make.
At the end of the day I will get what I want and very disappointed people. I’m told it is because I want control. I will agree with that statement because at the end of the day I have lived 47 years and I feel that I deserve to choose how I want to live the remaining.
Today was absolutely perfect. From start to finish. For the day I felt somewhat normal. Even though I could hear the whispering about my care, I chose to try and ignore it and have that wonderful day.
Now immediately I am sure most of you are already thinking about ways I could do this with Hospice being the first answer. Honestly, I’m done with Hospice, I was with them for one month before they kicked me out with zero communication as to why they removed me. In fact I was told I was being removed by a supervisor that was leaving her position that day. I didn’t even get the respect I deserved to speak to the case manager of Hospice.
I have since found out why I was discharged but it was not until I requested release of all of my records. A response was in my records on the third day I was admitted into the program.
Tammy Michaels has been admitted to NL Hospice with ALS, any medications, services or supplies related to this diagnosis will be covered by hospice. It has been determined that Acetylcysteine Inhaler, Benadryl, Polyvinyl Alcohol, Zyrtec, Relyvrio and sodium Bicarbonate are not covered by Hospice.
You will see the following equipment listed as not covered due to your ownership of equipment, suction machine, eye gaze communication device, power wheelchair and ventilator. If you have office visits you would like to attend, they will need to bill Medicare specifically as these are often not related to hospice dx. Any items, services or visits not disclosed and discussed with the hospice team could lead to non-coverage; we encourage you to continue to address all of this with your care team.
Medications covered by hospice will be ordered and delivered to your door, our nurses will work closely with the wound clinic to address new needs and carry out their orders, the team will work together to treat your symptoms in the moment and have the ability to manage in the moment.
We understand the desire to see your ALS provider and as discussed hospice will cover visit 2 times a year. Due to vent needs when specific needs occur the patient and team will discuss and then work on approval depending on need. In hospice there is always ongoing communication about what your goals are and how hospice can support you and your family.
Now this is a communication that was never sent or shared with us because I would have immediately corrected them.
I don’t own any of the ventilators and we told them that, this includes telling them what was rented and by who. I also told them I was willing to make any necessary changes if needed. Unfortunately they never communicated until the final surprise attack and the notes from that day are as follows.
Note: Maleka and I went to see patient regarding notice of discharge from Hospice as the care she receives and prefers is not in line with hospice. It has been discussed that she would be more appropriate for palliative care and home health as she is still receiving aggressive care.
It was relayed that she would be discharged from services on 4/ 15/2023 and the form was explained as well as how to appeal. She was very tearful and upset stating she wanted hospice and not home health and that all her various equipment and treatments were covered, that she’d looked them up. It was explained to her that is not a blanket coverage and it’s dependent upon several factors.
Her “nurse” stated they would fight it and again the appeal process was pointed out and how the process worked. I encouraged Tammy to call and appeal so that an independent contractor could render the decision and she stated she was not appealing and concerned about pain meds. I relayed that Dr. Martin would continue to oversee and prescribe her pain medications.
Her “nurse” stated that “we were lied to and it’s a disgrace you treat people like that. It was a hard decision that took time to make and you discharge her without notice.” She went on to state that Tammy has only equipment and treatments for maintainence and that was allowed in hospice.
I again encouraged them to utilize the appeal process and reminded them hospice care would continue at least until a decision was made. They were ensured that her pain meds would continue under Dr. Martin.
So the option to do Hospice is not my option because I want to be able to fight my fight without restrictions or expectations of ending my life sooner. I will continue to use my equipment, take the medications I want to take and live until God says, “Tammy you have completed your journey, it is now time to come home. “
I love that plan and will figure things out so my nurses have a little more freedom.
Now moving forward this post was supposed to happen last week but I got a little side tracked and would start falling asleep very early. Today my day was wonderful too. It started at 6A.M., when Nicole (RN) walked through my door unexpectedly. She was supposed to be on vacation but she ended early. There was a message last night that she was coming but I totally missed it because I was sleeping. So the look of surprise was probably priceless.
I absolutely love my mornings with Nicole before anyone shows up and after David leaves for work. We always have the best conversations. It is the part of my day that I feel so normal. I cherish those moments. I hope she does too.
Then I got a surprise visit from Casey. I have seen her so much lately and I absolutely love it. When she comes it is so real. What do I mean? Well, she also talks to me like I am human, she doesn’t feel sorry, talk down on, or act fake. I always get a kiss when she arrives and a kiss when she leaves. Our conversations are very similar to Nicole’s, they always provide laughter, tears and mutual conversations. At times we will even throw in some morbid humor. If you can not do anything with something you have been dealt, then make fun and laugh about it.
The other day Nicole asked me a very serious question based on her observations in the past year. A question that is so real and I had a difficult time answering.
“What happens to you if something happens to David? Not that I want anything to happen but really, what is going to happen? I only ask because I have only seen your boys and Casey. Where is your family? “
My reply was a hopeful one because I don’t have an answer. I have Parker as my second medical POA. I don’t really have anyone except for the boys and they would probably move me to North Carolina and they would care for me there. So she wrote down the plan and said “I feel a bit better “. I’m thinking Casey and her family should move too. My adopted family visits quite often as well, Merla, Marcey and Erika but I don’t expect my friends to take care of me.
David and I discussed our situation and came to the conclusion that people just don’t understand how to react around me. With them not coming around they also don’t realize the situation that I am in. With nobody coming around it has hurt us tremendously. It sucks on all ends of the situation. In conclusion, we miss our family so much.
How am I doing? If you made it this far you’re doing great. Remember I don’t need a fix. I share my journey to help others. I’m not doing the greatest. I’m in lots of pain again, I suffer from Dyspnea and hypoglycemia. We have found a mix that works great for my Dyspnea thank goodness. Once I get my monitor for my sugar we can get ahead of the sugar lows.
I have moderate weakness in my neck. I am unable to hold my head without good support. The strength I do have is very minimal. I have also had increased twitching in my face and less control. I drool a lot at night and bite down on my cheeks often. Besides all of that I am doing great!
I have been taking more calls on my own the past month. I have not been writing my book much lately but this will be added as well because it is a long one. I have been playing a lot of games lately although I have been losing against David. I keep telling him it is because I let him win.
In reality he wins at everything. Speaking of that he has stepped up and started to take care of him. I am so proud of him for doing this because if he is not mentally or physically healthy he will not be able to give me the care that I need. With the boy’s help he was able to focus on himself more. I’m so happy that my boys have taken charge a bit to provide respite for their dad.
Well I think I have filled you in with a great update. I appreciate you taking the time to let me share. Now I am going to offer a game of Canasta and I will not be so gentle.
PS. I am in desperate need to hire two more licensed CNA/PSS and three Registered Nurses.
I have shared the link for the RN. I will be sharing the link for others soon.
Remember to call your loved ones because you don’t know what tomorrow will bring.