The End

After moving my mom into her beautiful room she seemed to struggle quite a bit to get comfortable. We don't know if it was the move or if it was just her getting worse. She moaned pretty much every time she would breathe. They were giving her morphine every 30min. At one point we had considered leaving to sleep at our normal place. We decided to each take time alone with mom. As Laura was in with her I was texting Courtney to tell her that I was going in. She told me to make sure I said everything I wanted and that I would know what I needed to say. As I was saying all that, I was thinking, why are we going back tonight? We should probably just stay the night. Pretty much as I was thinking that, Laura came out of the room saying I am not going home tonight, you can, but I'm not. I was like absolutely not, I will stay. So, we decided to let Frankie have some alone time and Laura and I went to hit up the McDonald's at 11pm. That is a fine time to eat a greasy burger.

When Laura and I returned, mom really hadn't stopped moaning and was having some trouble. We continued to keep her filled with morphine and a couple other things were done for fluid. At one point, I sent a text message to my aunt Marsha and said is it silly that I want you to come tell her stories? She is a great story teller and I just thought maybe it would help calm her down. As we were texting, we got the idea to turn on some relaxation music. With the music, morphine with Adavan in her mouth and few tricks for helping with the fluid in her throat, and then a shot of morphine certainly not 30 min after the one in her mouth, she finally started to relax. Her breathing changed and her moaning finally started to slow. This continued and continued and the realization that the end was near became very obvious. Laura and I were right by her side. She opened her eyes and looked to us as if she knew that it was time, we told her we all loved her and quickly called my sister. And then it was over. It was very peaceful and actually became very relaxing because the moaning and the labored breathing was gone. And of course the pain was gone.

As noted above, we were already getting Marsha heading our way, but were able to catch her before she left without Mary. They arrived shortly after being called and we were all able to say goodbye. It was a wonderful gathering with Frankie, Sandy, Marsha, Mary, Laura, and I. We were able to share stories and in the happiness there was in being in a part of mom's, Margie's, Marj's, or Marjorie's life. To all of you that were on the journey with us we thank you for your thoughts and well wishes. We look forward to celebrating Marj's life at some point with each of you.

Finishing off day 7

Well, as said before, today was the first day of pretty much just sleeping. She is heavily medicated now, but it appears to be helping her rest peacefully. We have also noticed an increase of a wet cough. Sometimes she is able to get something going and we have now asked for suction. Anyway....the big move happened! Now...it certainly did not happen as expected. When Laura and I left the hospital for a bit, our understanding was that she would stay at St. Mary's through the night and then be moved to the Charter House. We thought it was all set up. Well, at some point the idiots realized that her health insurance, because we are freaking out of network, doesn't cover hospice care, pretty much anywhere in Minnesota. So, real cool...sure we will pay for room and board and morphine and nurse care all out of pocket! Un-freakin believable. Not to mention my sister gets a phone call from a different social worker and then another social worker from some Heartland Hospice Care. That makes a total of 5 social workers that have come into our life and not one of them was able to accomplish anything. I mean seriously on what planet, when my mom is listed as terminal last Tuesday night, does a social worker not call her insurance. I would think that is the first step...but I don't know!

So...all that being said...my aunt Mary decided to join my aunt Marsha at the hospital to have some sister time. While here, my aunt Mary, in her aunt Mary way decided to thoroughly explain to the doctors the ridiculous care we have received in terms of final placement. She went through all the social worker troubles and the strain this has caused on us, making us have to make unnecessary decisions and phone calls. She also pointed out that my grandfather worked diligently for the Mayo Clinic and that his family deserved better then this! Well, way to go aunt Mary...my mom was moved down 3 floors and put in a beautiful room. Now we were told by social worker Michelle, in her sweetest most annoying voice, that, "Oh no we don't have any respite or hospice care in this hospital." Hmm...I am sitting in a room that looks a lot like a hospice room. On another day when the question was asked by other members of our group, doesn't St. Mary's have some kind of room, the answer was, "Oh yes, we have just one room and its on the 6th floor." Hmm...I am sitting in a room that is not on the 6th floor, but the 3rd floor. Guess nobody really knows this hospital very well. BUT anyway, here we sit in a big room, with a pull-out couch and a fridge. It is a perfect room and my mom will be able to stay in the hospital. She didn't even know that she moved. We did tell her that she was in a new room and she picked her head up to look. Marsha also explained how hard Mary worked to help keep her here and she seemed like she understood. So...there we go. Now what...she gets to end her life in the same hospital she began it.

Oh by the way, my aunt Mary's profession in life was social work. Obviously, not one, of our social workers knew how to do their job! Ok...let me take that back, one of the social workers did her very best to get us in the Charter House and was excellent in my grandma's care.

We took Frankie and Sandy around to look at Rochester. We looked at the Hayles residence, the house the Pingatore's lived in, the Hyland's house, the Plummer House, where my parents were married, Mayo High School, where my mom graduated from, Folwell Elementary, where the Hayles went to elementary school, Lincoln at Mann, where the Pingatore girls went to elementary school, the Mayo Clinic and many other sites around Rochester. It was nice to tour the city.

Matt and Chase boarded the airplane and are en route to Minnesota. They will land in the Twin Cities around 11:30 tonight. They will sleep at my dad's house and head down here tomorrow morning.

We will have to say bye to Frankie tomorrow...

Day 7

Today they have decided to make sure that she is full of medication, so that she rests comfortably. She is being given morphine through injection now because she was having trouble taking it in her mouth due to alertness and spitting up. She also no longer had a viable IV port and they are not giving her a new one. The medicine has been working well, but she does perk up here and there and does seem to hear us when we talk.

Laura, Marsha (aunt) and I are just sitting with her. It is very hard to look at her now, as her appearance is much different. Marsha did share some stories with her about going to be with her mom and dad and getting to catch some big fish. Marsha would talk to my grandma about getting to be with Al (grandpa) again on Palisades (that was the name of our island in Canada) and today added my mom to the story. She had them fishing, which my mom seemed to enjoy hearing about. My mom also perked up and even gave a big head shake up and down, when Marsha told her to say hi to grandma and grandpa for us. Ugh...ok, depressing, but I guess that is where the time is taking us. Let me add one more thing to the depressing pot, Laura is in bed sleeping with her :-(

Ok...ok...maybe now would be a time to share something funny or a memory. So, let me think. Since I was talking about the island above, let's reminisce about that. The island was truly the most amazing place to be. It was in Kenora, Canada, which is in Ontario. It was a place of complete seclusion. We would have to wake up super early in the morning to drive from St. Paul to Kenora, because we would have to be there before dark. If we didn't make it by dark, we would not be able to do the 20min boat ride out there. Anyway, at like 4 in the morning, you would hear in the most annoying voice you could even imagine, this song...Way up in the sky, the little birds fly.....and on and on. The one part that was the worst was, "Good morning, good morning the little bird sang." It would be this shriek and boy were you awake! Anyway, once at the island we fished, played cards, swam in the absolutely freezing waters of Lake of the Woods, and just enjoyed times with grandma and the family. Good times and laughs were had by all!

Other news, it looks like we may be moving into the Charter House tomorrow. At first we weren't sure we should go to the Charter House, but now as we don't think it will be long, we are going to go there. My aunt Mary happened to run into a doctor that was friends with my aunt Marsha and was able to give us much more realistic answers, so that helped us decide on the Charter House.

Also, it looks like Matt is coming with Chase. I can't really explain how it felt to hear the news, but boy am I happy!

The rest of the day

After everything came out, she was happy. You could see a difference instantly. We were able to enjoy some good times chatting and joking around. Laura, Josie and I realized we had not eaten all day so headed to the Canadian Honker and left the rest to continue chatting.

As part of our big conversation, we were suppose to meet with the social worker. We waited from 8am-1:50 pm and contacted him twice waiting for him. We finally go to lunch, get our drinks and place our order and guess who shows up...stinking social worker. So, we try to have the conversation over the phone with him. As we start talking to him we realize that he has absolutely no idea what was going on. Now, I can't remember if I mentioned that our first social worker was in a bike accident and went to the hospital and our second social worker had a long vacation, so we are on our third. We were promised that the new guy would know it all, but of course not. So, we ate our lunch and then headed back to the hospital. When we got there, it got heated quite quickly with the social worker. I believe that the yelling and stern voices, increased mom's anxiety. Now, as I just said right now as reliving this moment, "Wouldn't a good social worker had realized that his client was getting anxious and either stopped the conversation or say that we would step outside?! Yeah, well whatever, we still don't have placement, but overall we decided that who cares we like her in the hospital.

Day without any tubes--

Of course with all the tubes out, we were unable to fight the inevitable...her stomach started to fill up. Due to the yelling at the social worker and the realization that her stomach was filling up, she became quite anxious and labeled her pain a ten. She did not have adequate coverage for pain medicine, she was unable to get the fluid out, and she was filled with anxiety. It was quite the rough patch, I mean she was literally writhing in pain. However, in hindsight, her pain and anxiety were probably caused by us yelling at the social worker. Once we all shut up, she began to calm down and fell asleep. All she needed to do was calm down and realize that the medicine was there and just needed to work. Whew...finally asleep and comfortable. Laura and I decided we needed some time away, so we headed out for a bit. On our way out we ran into her doctor, who had already changed some things up with her pain meds. They increased the amount of Adavan (helps reduce anxiety and relax) and the amount of morphine. They put the Adavan on a scheduled dose, so she no longer had control of taking it. This was because she would him and haw with the doctors and end up not taking the drugs. They also increased the meds on her patch.

So, as the day progressed, Marj has been resting comfortably with her pains meds working well. She hung out with her sister Marsha and her niece Josie, while Frankie, Sandy, Laura and I went out to dinner. Tonight because she was resting comfortably we all decided to try and rest as well. So, I suppose that is what I should be getting ready to do considering it is 12:30am here. So, I believe that is all that happened today. It was a stressful day because of continued worry, but we can say that we ended the day in comfort. I am going to take some Tylenol PM, so I can hopefully rest in comfort.

On a side note, at one point today, as I looked around the room and everyone was stressed out and haggered looking I said, "When do you think the doctors come to access us and give us our medications?" I mean seriously between headaches, not sleeping, anxiety, nervousness, and all around bitchiness, I need some meds!!

Day 6- Clarity!

Finally, a day that makes sense! Laura and I woke up early this morning to make sure we were here for rounds. Rounds consists of like 5 doctors and a rolling computer. Anyway, today finally after having the weekend to realize what all has been going on, we were able to come in loaded with clear and concise questions. I pulled the IEP meeting mentality, any of you spedies will understand, and said we will have a plan when this is done. So, plan...NG tube is coming out. The reason the NG tube was there was to suction the stomach. Overall, sure it has been suctioning, but it has also given her a yeast infection in her throat, so we are to the point where comfort has become more important in forms of tube out and more meds in. Also, the IV tube will be coming out. This was there for hydration and really was something that probably could have been out last Friday. The weekend really impacts things in the medical world...so yippee for Monday!! So...everything is stopping at this point. The only things she will be receiving are high doses of meds. They are going to increase the meds that are on her pain patch and then they will give her meds at any time she needs it or wants it. She will also have a catheter for urine. This is super because really the biggest complaint has been the mouth and throat, it being dry and sore.

So...the next step is placement. Now that all tubes are removed and only pain meds going in, nursing home placement is much easier. Once the social worker is here, we should have a better idea on where she is going. The hope all along has been that she will be able to go to the Charter House. We all sort of felt that grandma left on Friday to ensure that a spot was opened up for my mom. The one sticking point was the PEG vent, Friday afternoon was also when that was unable to be placed. So, all of you out there that think things happen for a reason...there you go!

Other news...Frankie arrived at 11:30 last night. It was dark so she couldn't see much, but has realized that fall has set in here and we are getting some very pretty trees. Once again...if things happen for a reason, I always talk about missing the changing of the season to fall the most being in AZ, so maybe she picked this time for a reason. Anyway, we sent Frankie up last night with Sandy and they hung out. Frankie and Sandy are bunking together at a place across the street. Sandy says it is very much like the Bates Hotel and if she was in any other city she may be a little nervous. However, the room is clean and quaint.

Hannah headed back to Wisconsin and Josie is back this morning doing her full body rub. And that is about all I have for right now.

Whoa...as I am typing out came the NG tube in one fell swoop! And, she is eating a Popsicle.

Day 5 continued

So, this has been a LONG day! The days that are the worst are the ones that she is not comfortable. I just don't get this whole comfort care thing. And to rant for a minute, there are a million things I don't understand about health care. Ultimately, it is a f$@%ed system and families absolutely should not for one second have to deal with the stuff that we have had to deal with in the last few days!! There are a million more things I could say on this topic, but quite frankly I am too exhausted and I am not done fighting about the system yet :-( All I can say is definitely make sure you talk about final wishes with your loved ones and really understand the difference between sustaining, comforting, necessity, and what's considered humane.
Ok...enough! My head hurts, my eyes are crossed, and my jaw hurts from clenching and discussing, so I am done with it for now.

Like I said before, today was not a great day for comfortable care. She had the suction turned off, had a reduction in morphine for a while and a lot of visitors. My mom is having more trouble understanding what is going on with her care. She frequently grabs onto something that was said and then has a difficult time moving past it. Anyone that knows my mom, it is common for her to take longer to process things, but this difficulty is increasing. And...I would like to say that she trusts her daughters completely, I mean we are totally doctors right?? But she doesn't and so she frequently needs to hear it from the doctors or the nurses to truly believe it I guess. I don't know really know how to describe it, but today she did not take a shot of morphine right away because she had it in her head that it meant her suctioning had to stop. We tried to explain it to her, but she did not get it, which prolonged her getting the dose of morphine. However, thanks to Nurse Issac, who really works amazingly well with my mom, made her understand why she wanted the shot of the morphine. So, I guess she finally took two shots of morphine very close together and also got Adavan to help calm her down. She then took about a 3-4 hour nap. A much needed nap I believe.

Some of the visitors were the Schieber kids, as stated before. After their visit, Laura, Josie and I met, Marsha and Mary and all had dinner together. It was nice to catch up with the cousins. After dinner, Josie and Marsha took two of the Schieber kids back to college, while the other Schieber kid, Hannah, Mary, Laura and I went back to "the home." It was at "the home" that we realized that we needed to have a detailed discussion about my mom's care and quickly became very thankful for my cousin Hannah. She was just what we needed...a third party person, invested but not quite as emotionally charged as the rest of us. She did an excellent job helping us decide what we needed to ask and how we needed to ask the right questions. We will be bringing her with us to talk and make a detailed plan with the docs tomorrow. So, anyway hooray for Hannah.

I just got a text that my mom has woken up, so I better march back down there. I hear she is dancing...so I am assuming the morphine is working just fine :-)

Oh...and go figure...Frankie's flight is delayed, so she will now be arriving at 11:30. Should have known...


OH...One more announcement. Phone calls. I cannot decide when phone calls are welcome. It is really quite a moment by moment decision. Those of you that really want to talk to her please call my phone first, 480.205.5913 and I can decide if she is up for phone calls. Really the best way to get a message or thought through is to post it on this site. Thanks!!

Day 5

Now that the gin and tonics have filtered out of my system, maybe I can make some sense ;-) My dad ended up spending the night because our dear sister Martha had to head home this morning. Martha woke up bright and early this morning and headed here to the hospital to spend some time with my mom. Martha started school in August to be an ultrasound tech and if she misses too much school, she would have to start the semester over. My mom would not have that and would be extremely angry with her if she didn't continue, so with great sorrow we sent her back to AZ. In my selfish mode, I am a little happy that she is headed over to give Chase some big kisses for me upon arrival. Laura and I are in a holding pattern for the time being. We are hoping for Hospice placement in the next two days and we will then hopefully have a clearer picture on our plans. Some thoughts are home and back...but we are only planning for 15 mins at a time. Those were strict rules given to us by our aunt Mary when we first arrived and we have quickly realized that 15 mins is truly all you can really plan ahead for, if not even less.

So, it sounds like Sandy Hyland and my mom chatted like school girls until about 1am. Early this morning Martha and my dad said goodbye and then the rest of the Hyland clan headed over. Laura, Josie and I were a little on the slow moving order this morning. Really no good reason why, just probably overly tired. We are also beginning the task of organizing and disseminating the items at Grandma Mayme's house. I would suppose there is maybe just a little stress related to all of that ;-) When Josie, Laura and I arrived we received the SUPER news that the Hyland children were leaving their mother with us. So, hip, hip horray, Sandy is here to stay!! Sandy said that she did not have much choice in the matter as my mom had a death grip on her hand asking her to stay.

The Hyland children have since headed on the road back to Bismarck. Josie is once again back to the full body massage for my mom. Boy...am I glad she is here to do that :-) The Schieber children, Marsha's (sister, aunt) children are on their way over. Two of them are going to college here in Minnesota and one is in law school in Wisconsin. We expect them shortly. Frankie is also beginning her journey to the Midwest. She should arrive around 10:30 tonight.

Marj's health. As I said before, they were trying a shot regime. Last night, they turned off her NG tube, so her stomach suction was discontinued. The hope of the medicine was that her stomach would not fill up with fluid and cause discomfort, but of course that did not occur. So, her stomach filled up and caused pain, which of course made her angry and cranky. She got some morphine under her tongue and we have since turned the suction back on, so hopefully we are moving back to comfort. There is also the option of having morphine put right in her IV, which is much stronger and could cause more loopiness, so we are trying to avoid that. So...yeah...guess that about sums it up.