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.

2nd Half of day 4

Gin and tonics are a good thing! Our family friends, the Hyland's arrived overnight and have decided to help us relax with some alcohol...so forgive me if this post doesn't make much sense!

Hmm...nothing really new in the world of Marj. We did found out that the long-term experimental drug is extremely expensive. So, we are continuing to experiment with the short-term version to see if it works before would even decide on the long-term one. Ok...hold on...I don't even know if that makes sense (hold on let me refill my drink). The experimental drug is for trying to reduce the fluid in her abdomen, so no longer a need for the NG tube. This drug has a short-term injection, required 3 times a day, as well as a shot that would last for 30 days. The 30 day shot is the one that costs an arm and a leg and also the hospital only has 1 dose of. So, they are sticking with the short-term one to see if it is even something that will work. She currently is on her second shot and they turned off her NG tube suction through tonight to see if it works. So, it will be exciting if it works because then we can lose the NG tube.

Other than that...many, many visitors. The Hyland's, the sisters, the daughters, the ex, and old friend. At one point, Josie, niece (cousin) came with my mom's favorite music that she played while she painted her toes black and orange and put butterflies on her fingernails. A basketball hoop was hung and it was a party! Overall, I would say today has been a day of trying to relax and enjoy life as it comes. In my gin and tonic haze, I will say that everyone should live life to the fullest. Don't be silly and let the dumb stuff overpower you because in the end it is all about trying to enjoy the little things!

Ok...ok...I should probably end this before anymore gin is consumed. I am going back to enjoying the party. Let me set the scene...3 Hylands, Martha, my dad, and I sitting around my mom's hospital bed, alcohol in hand enjoying many stories and good times. You could look at my mom and think that she is sleeping, but every time...that sneaky lady hears her name or hears us talking about her she pops her head up so quick to make sure she gets her word in edge

wise!

Oh...also a bit of exciting news, that we were unable in all this excitement to tell my mom yet, Frankie is set for arrival tomorrow night. My mom will be excited when we tell her in the morning when she is more alert. So, hip hip hooray for Frankie! And my god, almost forgot, we did finally get the Skype going, so the dogs were visited with...whew, those were some tense moments! Also, thanks to Martha Romero and Matt for getting baby Chase on Skype. Both Papa and grandma got to chat with him, although he doesn't talk! And mommy got to look at him from a distance, which certainly helps :-)

One more thing...Marj says she has the best high...she's on Morphine!!!

Day 4

Saturday-

Oof-duh! If that is how you spell the good ole Midwestern term of exclamation...that is the only way I can think to explain the last hour of time. We organized a Skype session with her dogs and a few friends. Easy enough we thought, but I am not sure why we thought anything about this time could be easy! We called her cable company yesterday to turn off her internet, phone, etc, but asked that it was still on for today. "Of course," Mediacom said, "As a matter of fact, we won't be turning it off until October 7th." Well, go freaking figure they shut it off. So, they tried to steal internet from neighbors, but that wasn't a great connection. So, currently Kristy Coleman is racing off to rescue Megan (our dear friend, really sister) with a wireless internet card. Hopefully, once the internet card is there we will be skyping. Our biggest mistake was telling my mom because boy is she excited, which has turned into being high strung and emotional. I would say the stress level in the little hospital room between, Marj, Martha, Laura, and I was off the Richter scale. Anyway, we have as peacefully as possible, left the room and demanded that she sleep. Whew...currently, we are taking deep breaths and hoping we accomplish this skyping without any more complication.

Update on Marj-
Let me think...we heard lots of medical jargon today, so let me think through it. Drug wise, she is off of her push pump for pain meds. She now has a patch that is sending medication into her and can have morphine under her tongue every 4 hours if needed. She will receive sleeping meds, nausea meds, stool softeners, and anxiety meds daily. She is also going on an experimental drug (go figure, let's experiment on her...I should have asked for compensation) that is suppose to reduce the production of fluid in the GI track of women. If this is successful, she may be able to lose the NG tube because there will no longer be fluid forming in her abdomen. They have yet to give it to her, but once they do it will just be a trial run. Once it has been determined that there an no significant side effects they will shoot it directly into a muscle and it will last for 30 days. Niece (cousin) Josie and sister (aunt) Marsha ran through all of the other possibilities to determine what was wanted and what was not. They produced a chart of post-its that the nurses are most pleased with because it makes it so they don't have to ask her what she wants. The only thing she has to ask for is the morphine under the tongue.
We also received the pathology report, that has been an extremely important piece to all surviving members of this Hayles clan, stating what kind of cancer this is. It has been concluded that Breast Cancer is the culprit. When I asked if that meant she was probably never really cancer free, the doctor agreed and said, "Probably some of the cancer leaked out and has been exploring its way through her body for the last two years." So, breast cancer beware the Hayles women are on a mission to rid you from all!!! Even though, yesterday in a hankering for my favorite pie, French Silk, we refused to purchase the Breast Cancer Awareness pie. It wasn't so much a refusal to donate, as an angry stance at it not helping us at the moment! Or really that the breast cancer pie was missing the black chocolate pieces on top and instead had pink ribbons (well edible ribbons). I believe I needed the chocolate topping, as I even snapped when poor little Idalia (my cousins five year old daughter) was trying to steal them off the top. Suffice it to say not one of my prouder moments, but it was all in a mess of high anxiety yesterday mid day!
AND...I really wanted the fricking chocolate pieces!! :-)

One last update. Upon arrival to my grandma's apartment to meet up with Marsha, Mary, and my cousin Josie we were not sure what kind of an atmosphere we would be arriving to, but were happy that there seemed to be a new peace and maybe even slightly lifted spirit feeling. It was nice to sit around and be thankful that grandma was finally where she wanted to be and that it was all so peaceful. We also enjoyed sharing stories and having some laughs. Of course, the poor Palliative Care doctor story got us all chuckling pretty hard (from last nights blog post).

2nd half of day 3

Let me begin this post by passing along the news that my grandma, Marilee Hayles, passed at 5pm this evening. She was surrounded by her daughters Marsha and Mary, who were there to hold her hand, stroke her hair, and list by name the many people that love her so much. Marj was told about 30 min after she passed. She seemed to take comfort in her death, as she is happy that she was finally able to go and join her husband. She actually made Martha, Laura, my dad, and myself share a shot of Dewars Scotch with her, her drink of choice. Thank you Anita and Martin for the scotch, we have already cracked into it ;-) Please keep that to a low roar, as we are getting drunk on floor 6 of St. Mary's Hospital.

Marilee Hayles
1918-2010



Update on Marj

We left Marj on her way to her procedures. They took her downstairs drained her fluid and prepared her for PEG vent placement. Once they got in they were unable to see where they were going to place the vent. The peritoneal wall was too thick, making them blind in finding where to place the tube. So, back upstairs she went again, without the vent placed. They left the NG tube in place. She seems to be okay with that. It was certainly what was causing the rage before, but I believe she has now resigned herself to the idea. We arrived around 5pm this evening. Laura and I were able to talk to the Palliative Care doctor about what had occurred and what occurs now. There really aren't any other options other than NG tube in or out. We are still unclear as to a timeline, however, she is not eating and has limited hydration. So...that pretty much sums that up. Anyone that has watched a survivor show, knows that you cannot last very long.
As we were being comforted by the Palliative Care doctor, my cousin called all our phones to tell us about our grandma. The Palliative Care doctor was a little taken off guard. His exact words were, "Um, ok, ah...wait, ok, what...oh my god, you poor girls," and then a long pause where really none of us spoke. He then of course offered any support and got angry for us at how life can suck so much for one group of people all at once!
After discussion with the Palliative Care doctor, we cried and visited with my mom, drank the alcohol, and chatted some more about options, jokes, possessions, and whatever else we have been left to chat about. My cousin Josie is on her way to spend some time. Currently, we are just keeping her comfortable and enjoying her once again nice personality, that is back thanks to a lot of drugs! :-)


And to end this blog session, let's sign off with some famous Grandma Mayme quotes:

"What does Pop Watson always say, Never look to high."
"With luck like that you could have sawdust for brains and probably do."
"And I have to deal."
"Who's deal is it?"
"Do you need to tinkle?"
"Like sitting in a fat ladies lap."

There are probably thousands more, but just can't think of them right now.

First half of day 3

Friday

Not a great day. She is in a horrible mood, not really mad at just one thing, but a combination of everything. She's mad the most though, about the procedure not happening yesterday because it caused her to have the dumb tube that is hurting the back of her throat. I think everyones spirits and thoughts have changed seeing her so angry and uncomfortable. I can definitely say that today is the day that we (the daughters) have all moved a stage. We are no longer in denial we are in pain. We are tired, having trouble focusing, having a hard time with expressing ourselves, and find ourselves not really moving (like we sat in a car for a bit without even driving). My sister Martha, who if anyone of you know, is probably the one with the most clarity and is working hard to keep Laura and I in check. She has been making fun of our inabilities...which certainly helps :-) On another note...I could probably use a speech therapist if anyone knows a good one. I really need some help with processing and sentence formulation ;-)

So, how the day has progressed. We woke up early to head to the hospital to beat the doctors on their rounds and to meet with the social worker. When we got there, Marj was angry and quiet. She did not have any interest in talking to us, however, we were able to chat a little bit about the stuff no one wants to chat about. I remember just two weeks ago making fun of a women who was meeting with her mother to plan her funeral. I mean the mom wasn't even sick, but I guess it is stuff that has to be thought about and planed. Whoa...anyway, I am digressing.

The doctors came in and did a good job of really validating her anger and expressing their sympathy for the procedure not occurring. We asked many questions, I suppose the only one that I will comment on is how long she has. We went from 6 months to days to unknown in a matter of two days, but they said they really can't say now (part of Palliative Care is to no longer check vital signs). They are going with Palliative Care because they are under 6 months, but all they are doing is taking a shot in the dark. I truly believe that if Marj had her choice, she would be done now.

Anyway, after the doctors we talked with the social worker about placement. They are trying hard to place her in the Charter House to be with my grandma. There was some concern that they are unable to support her with this vent placement, but Mary has since talked to them and they are interested in trying to help. Of course as always in this silly world financial issues are also pressing, but that is a whole other conversation.

After the social worker, we worked on plasma getting all in so she could have the procedures. First, the fluid draining and then the PEG placement. It took a while to get that plasma in, but once in they came to pick her up. Throughout the morning, the only bright spot was a nurse named, Margie (go figure). She was a huge presence that did not care who was angry or who was sad she just made herself part of the family and was able to make my mom smile. So hooray for her!

We don't have any other information at this time. We left her heading down to procedures and went to eat, as we realized we hadn't eaten and it was almost noon.

Day 2

Thursday

Hmm...what to say about today. The plan was to have a peg vent placed so that the fluid build up in her abdomen could be released. This was scheduled for 12:30. Anyone familiar with hospital time will know that 12:30 quickly turned into 3:30. Prior to the surgery she had to be given plasma. During plasma time, she was not allowed any pain meds...suffice it to say, she was a little cranky. Plus, she was cranky because she is sick of having to throw up this fluid! Well, as if things can ever go right for Marj, the surgery did not happen today. When they got her down there, Dr. Marj, said to the doctors, "Did we check my fluid levels?" Well, go figure...no they didn't and because there was such a fluid build-up they were unable to do the procedure. So, back upstairs she went with a vomit bucket in tow. Obviously, this angered her, as she is sick of dealing with this throwing up.

During the procedure, Martha, Laura, and I headed back to "the home" where we are staying, took naps and showered. "The home" is the Charter House where my grandma lives. We will be staying in her apartment, as she is in Hospice, Palliative, or Comfort Care (you pick which word you like best...I prefer Palliative because it makes me think that sure I can pallet what is going on, but its not really comfortable). Anyway, part of my grandma's monthly bill to live in the Charter House includes meals on the top floor. We had five tickets that had to be used before the end of the month, so Martha, Laura, Marsha, Mary, and I enjoyed dinner together. It was a nice time to tell stories about both grandma and mom, to catch up, and try to alleviate some stress. After dinner we headed back to the hospital. When we got there Marj was a little dejected from the procedure not happening and needing to throw up. It was hard to watch her be uncomfortable for like 45 mins just waiting for the throw up that she really has no control over, to happen. Understanding and noting her distress the nurses recommended placing a NG tube. I guess this was a thought previously, but they were hoping to have the PEG vent placed, so it was kind of passed over. However, once the vent didn't happen they broached it again. My mom agreed this time.

NG tube placement- This was definitely a highlight of the day. Not only did this provide relief to Marj, but it provided comic relief for us. My mom has many male nurses, which she enjoys giving a hard time. To place the NG tube, two of her male nurses came in together. There was quite a bit ribbing had by all. At one point, the nurse Jeff asked her if she was feeling relaxed. She couldn't believe they had snuck the meds in without her knowing. She kept saying, "No, I don't feel a thing." About 30 seconds after this we look over at her and she has her vomit bucket on her head and is saying, "I have my party hat on!" "Look at me are we ready to party?!" She was talking to Issac, the nurse and realized that Jeff, the nurse did not know it was party time. She said, "Hey, hey (of course she couldn't remember his name) I have my party hat on and are we ready to party?" At this point, they obviously decided she was good to go. They then placed the tube, which she complained about a little, but for the most part she was asleep. Once they turned on the suction, 800ml came out in about 30seconds! I must say it was quite amazing. We took a picture, but will spare you all. We left her sleeping very soundly, which will hopefully continue through the night.

Other than all that excitement, she was pretty tired today from all of the excitement of the daughters arrival and all of the phone calls yesterday. She says she enjoys the phone calls, but they definitely take a lot out of her. We of course want to thank you for all the kind words, thoughts, calls, flowers, and everything else. It helps immensely to know how many of you are out there thinking of us and would do anything for us!

After writing all of this today, I realized that I never even mentioned my grandma. I guess it is because there really hadn't been anything to update. However, in the last two days her health has declined. She is not responding to known voices and it hurts her to be touched, so she will not hold hands anymore. I guess they believe that she may have gout. Like many times before they think it will be soon, so we will see.

Oh...one more thing. We asked to meet with the social worker today that has been on my mom's case. They said that she won't be around for a few days, as she has been admitted to the hospital herself. I guess the social worker, who belongs to a bike club, had a bike accident and has broken a bone or two. So, new social worker has been appointed and we met her for a short time today. I believe that anyone that comes in contact with these Hayles ladies may be cursed.

Plan for tomorrow. Social Worker visit, tube placed, Marj's niece, my cousin Josie will be visiting, as well as my dad. It looks like family friends from North Dakota will be here early Saturday morning. Whew...guess that is all I got!

Day one

Wednesday, September 29th.

Marj and her sisters met with doctors to begin planning her final days. Sarah, Martha and Laura headed to Minnesota. Marj fielded many calls of shock and despair. She noted, "Everyone is crying." Seriously...that's Marj for you! She also noted that she knew she had friends, but she never realized how many people were in her life. She was obviously touched upon realizing this.

Sarah, Martha, and Laura arrived around 5 pm in the evening. Marj was up and alert...looked as if she was just recovering from surgery. She was in good spirits, making jokes, flirting with her cute nurses, and obviously excited to see her daughters. There is not much to report from Wednesday, as there were no more procedures done and she was resting comfortably.

She is currently hooked up to an IV, which is used only if meds are needed for things like nausea and is able to administer strong pain medication every six minutes by pushing a button. As part of what they call, Palliative Care, Comfort Care, of Hospice, they no longer check vitals and are working to disconnect her completely. This will include a pain patch being placed, so no longer attached nor will she have to push the button. They were planning for placement sometime tomorrow, Thursday. Her food intake is only liquids, broth, water, ice chips, jello, Popsicles, etc. Currently, she is unable to pass anything below, so as her belly fills up the only place for it to go is back out through her mouth. So, she will vomit a couple times a day to alleviate the pain of her belly filling with liquids. She is extremely annoyed by this feeling and will be receiving a tube in her belly to allow it to pass out of the tube. That procedure is scheduled for tomorrow.

A little background knowledge

Marjorie Jean Hayles was born January 20, 1950, in St. Mary's Hospital, to Alvin and Marliee Hayles in Rochester, Minnesota. She enjoyed a fun-filled childhood in Rochester with her two sisters, Mary, the oldest and Marsha, the youngest. Marjorie graduated from Mayo High School 1968. She went to the University of Minnesota, where she got her degree in Parks and Recreation (some of you may have heard that she went to school with Dave Winfield-if you know who that is). Marj married Joe Pingatore at the Plumber House in Rochester, Minnesota, in 1975. From that marriage she had three daughters, Sarah, Martha, and Laura. Interestingly, Sarah was born in St. Mary's Hospital as well. Marj spent the first part of her children's lives as a stay at home mom and watching a few other children. When the children had grown older and after a divorce, Marj went back to school to get her degree in school psychology. She graduated with a masters+hours (don't forget those added hours ;-)) from the University of River Falls in Wisconsin.
Marj moved between Rochester and St. Paul a couple times in her life, but made a major move to Arizona in the fall of 1993, to pursue her career as a school psychologist. She has worked for the Apache Junction School District since this move.

Health Background-
Marj was diagnosed with breast cancer November of 2008. She had a mastectomy in January of 2009. She had two surgeries after the mastectomy, one being a reconstruction and the other to remove a build up of scar tissue. She did not pursue any further treatment, but was given a clean bill of health, cancer free! Marj did begin to have some stomach issues in April or May of 2010. These pains came and went and were checked out by physicians. She continued to be given a clean bill of health and was told to change her diet. Some days were better than others, but she did change her eating habits.

Now...how we got here.

Marilee Hayles, Marj's mother, began to decline in health in August of 2010. Marj was given the news that her mother did not have much longer to live and that she needed to return to Rochester, Minnesota to be with her. Marj left Arizona on September 11. Upon arrival in Minnesota, it was not long before her mother's health quickly declined and was given days to live. The Hayles' sisters came together to be with their mother. While here in Minnesota, Marj's stomach pains continued and hit a head on Sunday, September 19. Her sisters commanded her to the hospital and off they went. You can note here the reason St. Mary's Hospital was noted and important above because that is where she went. So, upon entering the emergency room at St. Mary's Hospital, they had her back in their care before her sister could even park the car. Marj then spent the next week and a day going through test after test after test. They finally decided to do exploratory surgery and was scheduled for Tuesday, September 28. The surgery was expected to last anywhere from 2-4 hours depending on what they found. The surgery took about an hour and a half. Hearing the surgery only took an hour and half did cause all to pause, but not to worry. In hindsight, as her sister said, "We should have known that after a week and a half of being in a world renowned medical facility, with no answers, that it wasn't going to be as simple as a blockage in her colon!" And boy was she right!!
On Tuesday afternoon with her sister Marsha by her side, Marj was given the news that she had terminal cancer. During the surgery, the reason it took such a short time was because it was very easy to see that cancer was everywhere in her gut (as she calls it) and that there was not any salvageable tissues. Marsha said, "I was shocked by the news, but was inspired by her remarkable dignity and strength." Marj noted that she felt like there was something major wrong and did not feel surprised by the news. That afternoon the doctors said she was looking at 4-6months.
Tuesday overnight- As the devastating news was making its rounds and working to sink in, further devastating news was given. Through the night, Marj was unable to keep her blood pressure up. She was told that she needed to go to the ICU. Marj's sister received a phone call saying she was off to the ICU. A half hour later, she received another phone call that Marj was refusing ICU and any further measures. It was determined that if it was internal bleeding they would not be able to fix it and if she went into the ICU it would just be medications that would only prolong the inevitable. A phone call was quickly made to her daughters, as directed by the doctor, for them to come as quickly as possible because we were looking at days. It was thought that the surgery damaged her kidneys. A dnr was enacted.

Whew...quite a lengthy background. Everyone was fooled into reading this based on the title saying, "a little background knowledge."