Edited by Margaret Dore, click here to view originalFrom beginning to end my grandma was a fighter who was battling stage IV stomach cancer and was given 6 months to live back in January she outlived their time table, but the story doesn't end with a closed book.
I moved in with her in March this year and was with her every step of the way so my final decision came from what I thought was from the heart. We had a few good months where we would go out and she would go to gamble. She always kept a smile on her face up until the last few days we had with her.
Around mid June we had a ER visit which left her in the hospital for about 3 days. The final day we were there waiting around for the case manager to come talk to us about discharge. When she finally comes around she mentioned us taking hospice as an option. Now...I was quite accustomed to having RNs and doctors come to us about taking the hospice route, but I never thought we were at that point. So my answer was always no. This time it was different. They made me feel like the time was getting closer, which made no sense to me because my grandma seemed like she could run laps around this woman. She pushed to just set up an "interview" with a rep from hospice so they could explain what they provide. Since she was not a rep for hospice she couldn't answer my questions. I made the appointment and later on that day we had the interview. I asked my questions. First question, was my most important question and was the make or break for my decision to go with hospice. Will they provide TPN? (Total Parental Nutrition) what that basically is, is an alternative way to get your nutrients that you need into your body through PICC. My second question was, will they still do blood work? She answered yes to both of my questions. So in my mind it was a win. Why not? She gets what she needs and the pain medication when she needs it. Everything 100% covered. Oh, and home visits when needed from nurses and doctors. Fantastic, right? Wrong. They provided neither of the things I had made pretty clear were key points to what I wanted for my grandma..Long story short to this situation, my grandma's health started to decline within a day on the second day I called Hospice and revoked their services and rushed my grandma to the ER. Within 3 days or so she was back to her smiling self again.
Over the next two months things became real hectic. Mostly because our usual hospital was full so they took her to UMC (which is a teaching hospital.) At this time my grandma was completely capable of making her own decisions. So when they approached her with doing a stents procedure she thought "Wow finally a doctor that actually cares enough to do something." Since this entire time nothing had worked the 5 sessions of chemo had done no help and every doctor she had spoken to up until that day had said they couldn't do anything for her. After the surgery she was in so much pain and I noticed her stomach was bloated. I mentioned it to the nurse and she said she would keep an eye on it and give her some pain medication. The following day she had said they were discharging her. Which surprised me because all the pain she was in the day before and the bloating. I drive to the hospital and see that her stomach is twice as big and experiencing lots of pain. I fetch the nurse to ask her how and why they were discharging her. She had said the swelling would go down and that the pain would subside and the doctor agreed to send her home with a script for pain medication. Great. Day went by and the swelling did not go down. The pain increased. We rushed to the ER at 6 in the morning. My grandma never returned back home. Back and forth she was bounced between hospitals and rehab. Her stomach became so bloated that they decided to add a PEG tube to her with intermittent suction.
Second week of September came along and we were being told by the current rehab my grandma was in that we had to find a permanent placement for my grandma since she wasn't in need of rehabilitation any longer. They even said she could go home with us. Which I questioned because I've seen a lot things go wrong with the PEG while she was in rehab care. Not to mention that I wasn't qualified to even know how the wall suction even worked. Finally a case manager from Senior Dimensions got involved and was able to get the doctor to back off temporarily, but we still needed to find a facility that would cater to my grandma's medical needs. We talked out our options and my grandma's final request was to try getting back home back to Hawaii. If she was gonna spend thousands of dollars on a medical nursing home here why not spend the money getting back to Hawaii. So I said that sounds like an awesome idea, let me see what I can do. I spent the next few days talking to doctors, pharmacists, and airlines. All to figure out what I needed to do to get my grandma where she wanted to be. All checked out to work in my favor except for her doctor at the rehab. She told me my grandma was unfit to fly, which made sense because of the PEG. Though she had been off of that for hours at a time before so in my eyes the only thing we had to manage was her pain. Which I know I would be able to get from her primary doctor, but this doctor would not release my grandma into my care because it was too dangerous. Which again I understood. I brain stormed again and thought of.....Hospice. If all we needed was pain medication lets see if I can find a facility that would work with me. I called a few places none were interested in hearing my story. Until I came across a high ranked facility.
Odyssey Hospice- A Gentiva Company.
I reached out to them and they agreed to see myself and my grandma. A lovely RN from this company who I think of now as the poster child for Gentiva. Came and painted a beautiful picture for us after hearing our goals for my grandma and going to Hawaii. Now she did say that it would be a challenge, but boy did she go far. She spoke with the director of this company and got them to agree to keep my grandma on ProcalAmine.. Which is a generic TPN not modified to cater to any specific individual's needs, but that was okay because this was temporary. They would still do the PEG suction and of course we all know this they would give all the pain medication she would need. My grandma agreed and everyone else that I spoke with all agreed if they would do what they could to get her back to Hawaii then lets go for it. Who knew things would slip so fast.
That night they came to transport her to their facility. She said her goodbyes to the nurses and CNAs that were with her everyday at the rehab . She was laughing and carrying on with conversations as she got into the medic transport and was taken over to Odyssey as we all followed. After we arrived we see that they had already put her in her room and were prepping her and asked my sister that had road with her to step out so that the doctor could talk to us all. 30 minutes later a doctor comes out and talks to us. Says we would talk about plans the following day. We go in and she already seemed kind of out of it. I asked the nurse if they had given her something and she said Ativan and Morphine that was part of protocol. I asked what ativan was since I've never heard of it til that night. She said its mostly for anxiety, nausea and insomnia. I didn't fight it because my grandma suffered from nausea a lot. I kissed her goodbye and said I would be back in the morning. My sister stayed with her that night, and I came back first thing in the morning. Not even 12 hours later.
What happens now are the worst days of my life. I walk into the room to see my grandma "sleeping." So I let her rest and ask my sister how long has she been sleeping. She said its been off and on but the nurses kept coming in to give her something. I didn't think that sounded right so I found one of the nurses that was overseeing my grandma and asked her how often they give her morphine and her answer was "whenever the patient seems to need it." I said okay and left it at that. I watched when they would give her the morphine and it would literally be every time they heard her make the slightest noise so I finally said enough is enough. I kept them from giving her the ativan that was part of "protocol." Every time my grandma would get restless we would go to her and do our best to get her to relax and she would most of the time. Some times it would be so scary because we could see she was in pain and we couldn't do anything to help her. A nurse came in during one of these times and came to me and said, "we're here to keep our patients as comfortable as possible and you're keeping us from that and seeing her in this much pain makes me feel so bad for her." Those words ate at me for the rest of the day. I felt I was the one torturing her.
I tried to talk with this nurse about how my grandma was fine not even a day ago. How it was possible for her to be able to go to the bathroom, laugh, and talk for hours and hours. Now not even a day later she can't even open her eyes to look at me? Her next words made me wanna punch her in the face along with every other person that had said this to me.."Its part of the process sweetie." I was so taken back by this response I had no words that would come out of my mouth. How could you say this to a family? Oh, because we're all the same. In their eyes every person that is in inpatient hospice care has the same story. So, "its the process" is a generic I'm sorry you're going through this, but get over it you chose hospice.
The next day, my grandma developed a sort of gurgle. My mom looked up different cases of this and found that most call it "deaths rattle." Which comes when a person is close to passing. When the nurse came in to check up on her we asked her what could be causing the noise. The first thing out of her mouth was "Oh its definitely pain." So we agreed to have them give her the medications again. After they gave her the ativan and morphine the noise didn't stop. So we searched google and found that its because she was unable to swallow and was producing too much saliva. So it caused the gurgle. So why was this woman's first and only response "Oh its definitely pain?"
I couldn't sleep this night my mom, uncle, sister, and myself all stayed with her. The one thing I loved about this place was how they did cater to the families anything we needed they would get for us. So that night around 1am I got up and sat in the recliner next to her and held her hand for a bit and I fell asleep for about an hr. I woke up and just sat there and watched her not knowing my mom was awake she asked "how come grandma's not making that noise?" I looked at my grandma and said I didn't know, but she was still breathing. All of us were awake at that point watching her breathe. Each breath was getting slower. Was about 6 seconds between each breath. Her last breath was a gasp that I will never forget. It made me jump and yell "oh my god" I turned the light on to get ready to turn her over on her side because I thought she was throwing up. When I stopped in place because I notice she was not breathing. I waited...and waited for her to take a breath that never came.
I am thankful that myself and my family were there with her at this time, but with all my heart I know that this came too soon. This was not part of the deal we signed up for. We had no say in anything. We were not spoken to about their agenda and what they would be giving my grandma. It was a promise to get her back to Hawaii once they could see if she would be able to be off of the tube for the duration of the flight. My grandma died not even a week within Hospice inpatient care and endured what I strongly believe to be a medically induced coma. If this is what they mean by dying with dignity I must not understand what I myself find dignifying.
My biggest mistake in all of this was believing and putting my faith into doctors and nurses that have their own agenda's and took their word that they would do right by us. Maybe I am just angry or maybe I do not want to accept that this was the process. Though in my heart I truly think I am not wrong in this.
My advice to anyone who finds this message.
1. Ask your doctors questions. Do not be afraid to ask any question that comes to mind. As ridiculous as you may think it sounds, ask your question.
2. Be proactive with everything. Do not let the doctors our nurses persuade you to decide on something that does not feel right. Majority of the time its as clear as day just like with everything else that comes up in life. If not take the time to decide do not let them rush you.
3. Hospice might be the right route for some people, but they are not for everyone and if you truly believe that you are NOT at that point yet or that your loved one is not at that point yet. Please do not let anyone talk you into something you don't feel is right. You'll live with the regret for the rest of your life if you do.
4. They will talk down to you and they will make it seem like all hope is lost. You know your situation they know just the lining of your situation. No one with a medical title will help you decide what is right. They will answer as it benefits their own agenda and base your situation as a general situation. They cannot invest emotions or personal opinions in your life. In most cases your family is your biggest asset. Or your trusted one.
5. Hospice is exactly the same as it was years and years ago. They will tell you that they are nothing like they were before. That they are not about death. That they are about helping you and your loved one reach your goals and in the worst case scenario to help you or your loved one be comfortable and die with dignity. When in most cases if you do your research which I highly suggest you do before making ANY decision. In most cases your story will end just like my grandma's. Our country does not have a legal way to commit suicide per say, but going through what I have within those short days with hospice I would beg to differ. Agendas between Medicare and Hospice facilities are kept so quiet that it makes it hard to question whats really going on behind closed doors.
The one thing I would truly push is to make sure you please doo not rush any decisions if at all possible take as much time as you need before you decide anything.. I hope this helps you for I wish I would have found support sooner.
If you found my page on your own check this blogspot out to compare stories or to just get a better understanding of what you or your loved one is getting into. (Instead of just hearing what hospice is all about from hospice reps/drs/rns.): http://hospice-uncovered.blogspot.com/2010/01/hospice-and-what-they-will-not-tell-you.html