A Decent Weekend

The last few days have been pretty good for Chris. Her energy has been much better than it has been in weeks. She was eating pretty good and had lots of visitors. I think all the visitors helped her tremendously. She even sat on the sofa both days.

Last night her pain got pretty bad. Her pain is coming back before her next dose of pain medication is due. This was happening most of the day yesterday. They upped her pain meds to 5mg every 3 hours. Hopefully that will make a difference and keep her more comfortable.

The way the last 2 days have been it makes me wonder if we are going to have more time with her. I know it probably won’t but she just seems livelier than she has been. She has even been eating a little better. I know eventually the kidneys are going to shut down entirely and the starvation is going to overtake her. Days like this just make me wonder how much longer she can continue.

I know she is going to have good and bad days. I am just thankful for the good weekend that she had. She had so much family around this weekend. My mom’s entire family came down from Vero to see her. I think she was a little overwhelmed, but she was awake and lucid the entire time.

Yesterday her best friend from high school came to see her also. She loves seeing Rosemary. It always makes her so happy.

Another ok Day

Chris slept pretty much all day yesterday. She was up at 8 in the am and was really confused. She went back to bed around 10 and slept until 4:30. She went back to sleep again around 9 after Kurt came to see her.

Same thing so far today. She was up for a while this morning, went back to sleep around 10 and as far as I know she is still asleep and it is about 4:00 in the afternoon. This is probably how it is going to be for now on.

This morning she scared me. I went back to see her and she was sleeping but she was twitching and jerking. From what I understand this is normal but it still scared me.

I talked to the hospice nurse and asked for her professional opinion on how much long she felt Chris had and she said maybe 2 weeks.

An ok night

Chris came home last night. She was pretty alert and talking a little bit. I made her some broth which she ate. She was then asking for some orange sherbert but fell asleep before I could give it to her. She slept all night and woke around 7:30 this morning. She was extremely confused. She had not clue what day it was or that it was morning. She looked at me like I was crazy when I told her it was Wednesday. She then asked for broth. I told her it was morning and asked her if she wanted cream of wheat instead and she said ok. When I brought it to her she said “this isn’t broth”, so I took it away and made broth instead. I made her the broth and she was shaking so much that she couldn’t feed herself. I put the broth in a tall mug and she couldn’t lift the mug either, so then I put a straw in the mug and she was able to drink it that way.

Every day is getting harder. Thank goodness she has around the clock care for her through hospice. I don’t know what we would do if we didn’t. She has a couple of hours of day where she is alert and not really confused, but that is it. Before long the confusion is going to get much worse.

Chris is Coming Home Part 2

She is stable and expected to come home today. They are sending her home on the IV nausea and pain medication that will keep her stable here. She said that as long as she has the IV meds she feels comfortable coming home.

She is weakening quickly. I am sure this episode did not help. She can barely speak and can barely get herself on the commode. Mom was there yesterday and she almost fell off of it. She did go to the bathroom twice yesterday which is good.

I still don't think it is going to be long. She is saying alot of things that don't make sense. Yesterday she said she was looking forward to getting out of there and going back to work. I am not sure if its the meds of the dehydration doing this to her. Either way, her physical state is definitely worsening.

I have started to call extended family in order for them to come see her since we don't know how long she has. My mom's side of the family should be coming to see her this weekend. I haven't been able to locate my uncle in New York. It is like he dropped off the face of the earth.

Saw Chris in the Hospital

She is not doing well at all. They think that she will stabilize in about a week and plan on sending her back home on the IV medication that she needs to stay stable. We all don't think that she is going to make it out of the hospital. The BSO Chaplain came by for last rights. She doesn't even want her cell phone with her. Its not going to be long.

Bringing her home didn't work

Chris came home on Friday at about 5:30. She was doing ok. The nurse was there waiting for her. She was fine for the first 6 hours. She ate a cup of broth and 2 small bowls of orange sherbert.

About 3 am I woke up and wasn't sure why. I went back to sleep. In the morning the nurse informed me that Chris had been throwing up since 3 am. She was throwing up bile and blood. The phenergan suppositories weren't working. She was like that all day.

An RN came at 1:00 to evaluate her. The woman was a complete bitch. She said that Chris' body just needed time to adjust going off IV phenergan and transition to the suppositories. Time isn't something Chris has and the idea is to make her comfortable.

She continued to get sick and only went to the bathroom once the entire day. She refused to eat or drink anything. She also refused all of her medications.

The nurse wasn't happy with the RN's response so she told me to call the nursing supervisor. So I did and at about 6:30 the second RN came. She actually called the on call doctor (which the first RN never did). He instructed us to call 911 and get her to the hospital to stabilize her. They would put her in a hospice contract bed and give her the phenergan she needs hopefully by IV.

So we called 911 and they were there within 10 minutes. They wanted to give her an IV of sugar water since her glucose was under 20. We refused since she is a hospice patient, so they gave her a shot to raise her blood sugar. I picked up mom at her house and she and I headed to the ER.

She continued throwing up at the hospital and seemed to be getting worse.

Once we got in we instructed the doctor that she was a hospice patient and we needed an IV for medications only. They gave her a shot of Phenergan and dilaudid. After about 10 minutes she started to relax. Mom and I told her we were going to leave.

I got home around 9. At 10:30 Chris called me to let me know that she was comfortable and that the Phenergan shot worked. We thought that we were going to lose her last night and she thought she was gone too. I asked her if she wanted to die last night and she said, "no, not like that". I then asked her if she was ready to go and she said yes. So now we are trying to get hospice to let Chris spend the rest of her days comfortable at the hospital. She doesn't need to be at home. At least we have her close to home now.

Chris is coming home.

Since she is not near death yet, hospice is sending her home. She will have 24 hour continual care for the first few days until we know how to care for her. This won’t be as bad as caring for her while she was on the feeding tube and the PICC. Once we are adjusted the nurse will come once a day to check on her as well as a doctor. If she starts to have an episode all I have to do is call her team and they will start around the clock care again. She will never have to go to another hospital again.

When I told her about this she got really scared. Every time she winds up at home we are back in the ER really quickly. I assured her that this is different since she is under hospice. They will make sure that she gets everything she needs and that she continues to be comfortable. At least she will be able to spend time with me, mom, and the girls. I know she misses us.

So tonight I have to clear out the family room as much as I can in order to make room for the hospital bed. We are getting that, a commode chair, a table, and a wheel chair. Once she is too weak to get out of bed to use the commode she will either be using a bed pan or adult diapers. She is already so weak and she is getting weaker every day. Please pray for strength for all of us. We are going to need it to get through these next few weeks.

Nightmares

Chris is starting to have nightmares. She had 2 nightmares last night. The first one she doesn't remember much except that it was about ghosts. The second one she was at Mike's job while he was working in the rafters. She was walking around and there was a guy following her aggressively. She screamed so loudly that the nurses came running in to make sure that she was ok.

The fear of death is really getting to her. She just needs to keep praying that God will give her peace to get her through this. We told her to talk to the psychologist about this. Maybe they can give her something that will help.

She is sleeping more and more. She is afraid to sleep but we are telling her that she has to. Her memory is starting to go. She doesn't remember things that she said 5minutes after she says it. She is starting to sound a little drunk now too. This process is not going to take that long.

Still No Sight

Dr. Roskin emailed me back yesterday afternoon. She made me feel so much better. After I explained to her all that we have tried to do for her and she agreed that Chris’ decision was the best one for her. She is so sad about how much Chris has suffered as we all are.

I read Dr. Roskin’s response to Oscar so he could see it. He really made me feel like crud yesterday. He made me feel like I wasn’t doing enough for her. I guess he really doesn’t understand.

Chris’ eye doctor appointment didn’t go well. They did nothing. They told her that she just needed to sit upright and it would clear up on its own in about 3 to 4 weeks. In that amount of time she won’t be with us anymore. So she is going to spend the remainder of her life blind for the most part. She can she shapes but can’t see faces at all. She feels so isolated because of the fact that she can’t see.

Guilt

I feel horrible. Dr. Roskin (Chris’ old primary who treated her in Miami) email me. She found a clinical trial for a new gastroparesis medication. Unfortunately Chris is way beyond Medicinal trials. She wanted to make sure that we had tried everything for her. She also mentioned the transplant, which the transplant doctors will not even consider for her. So I emailed her back with everything that has been tried and I mentioned how the transplant doctors will not consider her for the transplant. They felt it was too drastic and would not perform it just because the patient wants it. I have not gotten a response from this email yet.

Well I was telling Oscar about the email and he was getting on me about how I should let Dr. Roskin try to get Chris the transplant. I tried explaining to him that they won’t listen to her. They would not even evaluate Chris. Plus she is so weak that she would never survive the transplant. It turned into a fight. He made me feel like I was giving up on Chris and have not done enough for her, just like my dad. I am sitting here just feeling like I want to cry.

I called my mom and she said she knows that we have tried everything, including trying to get her the transplant. She said I should try to not let them make me feel like that. I guess I just feel like that everyone except mom and Chris thinks that I have not done enough.

It has been a long weekend.

On Thursday Chris lost the vision in her good eye. The hospital will be taking her to the eye doctor for a treatment either Monday or Tuesday. I really hope the treatment works.

Saturday my mom and I went to the funeral home and made arrangements for Chris. She wants to be cremated. It was very hard to go there and make those arrangements for her. It is making the situation much more real.

Mom and I went to see her on Sunday. She is already weaker then she was last weekend. She tried to walk just to the foot of the bed and back and got completely winded. We stayed for about an hour and half. When we left she called my mom on her cell phone crying. She feels so alone and didn’t want my mom to leave. This is just breaking my heart. I talked to her about it and she says she is ok. The emotion comes in waves for her. This is why I wanted her in hospice up here close to home but she insisted that she wanted to stay where she is. She is now regretting that decision.

Almost Done with TPN

Christine is still being weaned off the TPN. They are giving her 40ccs and hour. She will be completely off of it by tomorrow afternoon.

The social worker came to see Chris today and she talked to me as well. She needed to know if we had any “discharge” plans. I had no clue what she was talking about. It turns out that hospice is very short term. If she is not deteriorating quickly enough she will be discharged from the hospital. If this occurs we will need to figure out where she will go. Most likely we will have to bring her home as we can’t afford anything else. We will have a nurse available to us daily just not 24 hours. Hopefully if this does happen it will be when she is completely confined to a bed so that mom doesn’t have to do much for her during the day.

My dad is going to see Chris today as well. He is still at it. He is not happy that they are not giving her IV fluids. He does not understand that hospice will not give her continual IV fluids because that is life prolonging. If she becomes dehydrated they will give her enough IV fluids to stabilize her and that is it. This was all explained to us the other night and he is absolutely clueless about it.

I understand that my dad is having a hard time dealing with this but he is making things so much harder on Chris and us. We are just trying to do the best thing for her and he obviously thinks that we are making the wrong decision. He hasn’t been the one taking care of her. He doesn’t know squat. I wish he would just leave her alone. I would hate for her to have to tell him to not come and see her anymore, but if he keeps it up it just might come to that. What concerns me is what he will try to do when she is unconscious. I know he will try to fight to put her back on life support. Thanks to her living will that is not happening.

Hospice Meeting

We had our hospice meeting last night. The whole family was there - including my father. My sister was so tense and stressed out because of him. He kept saying over and over again that she could change her mind and he kept making jokes about taking her out for pizza. It was not in good taste. They are taking her off the TPN some time today. She wants to find out if she can continue to take her anti-rejections because she wants to make sure that she can keep her organs healthy so they can be donated.

Chris called me this morning crying. She had a really emotional night. It is all sinking in now. She is still solid on her decision but she is scared for those that she is leaving behind. I made the mistake of putting Lexi on the phone. That made her start crying again. This is going to be a rough 6 weeks.

Where is she?

I have been trying to call Chris all morning and she isn't answering the phone at the hospital or her cel. I hope she is ok..................

The final decision has been made.

Chris called the doctor to let him now her decision. She is going off the TPN. Tomorrow hospice will be coming to see her tomorrow and then they will be taking her off the TPN some time this week. She is tired of the vomiting and the pain.

The sad thing is that she is worried about us. I keep telling her not to worry about us and to focus on her self. the doctor's believe that she will survive a maximum of 6 weeks.

She has made her decision

Chris is going to go off the TPN. She is going to talk to Dr. English to determine when. I am so scared. I can only imagine what she is feeling. I pray God takes care of her.

I asked her if she wanted to try eating after she went off the TPN as she would have nothing to lose. She said that she doesn't want to as she is tired of being sick. This is such a painful thing to go through.

A Good Day Gone Bad

Chris now has a fungal blood infection.

A good day so far

Chris seems to be doing ok this morning. My mom actually found her best friend from high school and she called Chris. Rosemary is bringing two other of their high school friends and they are going to see Chris today. She is so excited to see her.

My mom said my sister sounded really upbeat. It is probably because she is excited to see her old friends. I am happy that we are able to give her this. Chris told my mom that this was the best gift she could have possible given her. Even if it just lifts her spirits temporarily it’s worth it.

My dad called Chris yesterday and apologized for stressing her out. He promised to respect her wishes. When my mom told me this I was shocked. This man has never apologized for anything in his entire life. I hope he means it when he says that he respects her wishes.

My mom is feeling guilty. Since Chris is feeling pretty good today my mom is starting to doubt things. She is thinking that “maybe” she can eat on her own and will be ok. I have had these thoughts myself. We have tried and it never works. Last week she ate pudding and ice cream and two days later she was getting sick. It is so hard because I hope that we are doing what is right for her. I always wonder “maybe she will be able to eat again.” I know deep down that is never going to happen and Chris knows it too. We just need to get past the emotional guilt. We know that truth and we just need to do our best to accept the fact that there is nothing we can do that will fix her stomach and make her able to eat. I really wish things were different. We have known for a long time that we would ultimately lose her. I didn’t realize God was going to force her to make that decision herself. That is the hardest thing to deal with. How do you make the conscience decision to let yourself die?

History of Dad

Our parents got divorced when Chris was 12 and I was 14. When my father left we rarely saw him. We would see him on the weekend occasionally until he got married when I was 18. At this point we saw him once a year at Christmas time. After a few years I broke this tradition and we didn’t see him for about 10 years.

Chris has been in and out of the hospital with her gastroparesis since 1994. In that time my father only came to see my sister a handful of times. Myself or my mom would call him to let him know that she was in the hospital and all he would say was “keep us posted”. My mom handled Chris’ sickness pretty much by herself.

When my mom and sister moved up here things changed. This is when she moved in with me and got really terribly ill. My dad would take her to doctor’s appointments and to the ER occasionally which we really did appreciate because it took a burden off of us. But because of this now he is trying to take “control” of the situation.

He wants all of my sister’s records because he wants to send them to Duke University. Chris doesn’t want that. She is tried of being poked and prodded and would be too weak to even make it to a trip to another hospital. In her heart she knows that we have tried everything and it has all failed. The medications, the botox injections, the pacemaker, and the gastrectomy were all failures. My father doesn’t want to accept this mainly out of his own guilt for not being there for his daughter.

He is completely stressing her out and we have told him to let it go but I know he won’t. He thinks he is going to come up with some miracle cure for her condition. Something that I obviously couldn’t find with all the hours of research I have done on the subject. I am sorry that he is pained over what is going on but so am I. My mom and I have seen her waste away over the last year. Her body will never be the same. Doesn’t it mean anything to him that the doctor referred to her condition as terminal?

The Ultimate Decision

I did it. I told my sister that she was going to have to make a decision between living and dying. It was the hardest thing I have ever had to do in my life. She has been living on TPN (IV nutrition) continuously since February. The doctors have told us that we are just prolonging the inevitable.

She has 2 choices. She can stay on the TPN indefinitely and eventually die from a really bad blood infection and live out her days in a nursing home or she can go off the TPN and she will have 4 to 6 weeks to live.

My mom and I went to see her and give her this news. She did not realize that the TPN was the only reason that she was alive. As I was talking to her I could see the tears rolling down her face. At this point mom started talking and I lost it. I couldn’t contain the emotional pain any longer. Once we were all done crying together we talked more about it all. We told her she did not have to decide now. She said she did not want to live in a nursing home. She wants to come off the TPN. We told her she does not have to discontinue it now but she can wait until she is mentally and emotionally ready.

The immediate family is going to be coming to see her on Sunday. They have all been informed of her condition and what her choices are. They don’t know what she has decided and they won’t be informed until she is ready to tell them.

My father called while we were there and really pissed me off. He told her not to let anyone influence her decision. He made it sound like I was going to try to influence her in some way. I called him and told him this when I left. He claims that wasn’t how he meant it but I know better.