Two Weeks of Lessons LEARNED (by ME)

Yes, this is VERY long, but I think it is important for the boys to have this and remember this!

I think things have calmed down enough that I can try to put into words the last couple of weeks. I was called to Texas on the 20th. Paul's great aunt (actually more like a grandmother - she raised Paul's Dad) was in the hospital and going to have surgery to correct a blockage in her stomach. They thought there was an ulcer causing the blockage, but could not get a scope or anything in to see for sure what the problem was. She has had problems for quite a while with her stomach and has gone to several GI drs and had test done.

Monday was her surgery. Sunday and Monday she was talking to us, but in a lot of pain. She was pale and overall did not look like the Aunt Mary we knew. I had honestly never seen her so frail looking. We were concerned with whether or not she would have the will to make through the surgery. Ever since Paul's dad died about four years ago, she had been depressed. Her husband died 21 years ago of cancer and she has never as much as looked at another man. She has always talked about him with such love and affection. Even though I never met him, I felt like I knew him forever. It is so funny because the kids walk around talking about how much they LOVED Uncle Bill. It amazes me that someone can make you feel that way about someone who has been gone so long and that you have never met. Anyway, we just felt as though she had given up.

So, we got there before her surgery and went down to the surgery area with her to talk to the surgeon. He explained what would be done, how long, recovery (at the hospital and when she left), etc. We went to the surgery waiting area and...waited!! The dr had said an hour to two hours for the surgery. We started getting concerned when we were getting close to the two hours, and REALLY concerned when it went over the two hours (although I don't think it was much over). The surgeon came in and sat down. The expression on his face did not look good. He told us she made it through surgery and was in recovery. I am thinking "this is good, but something is not right." He continues by telling us that when he went in they found tumors. They biopsied them and they came back cancer. She had advanced stage 4 stomach cancer. We were COMPLETELY shocked. How could this not be found with all of the test she had done over the last year.

Dr said he was going to tell her the following day so that she had a little time to recover. We were, again, very concerned with how she would take this. The fact that she had watched her husband fight and eventually lose his battle with cancer, and was by his side the whole time and the fact that she was already depressed, we did not think she would even try when she heard the news. We requested that she was not told until someone was there with her. A note was put in her chart not to tell her anything without someone from her family being there.

The surgeon was optimistic. He said that he had removed most of the cancer and she had at least a good year of quality life left. He kept saying we just needed to get her out of bed and moving so she could start healing and did not develop pneumonia. We were on board with her getting up and moving, but really concerned about the fact that he wanted her off morphine completely and would not give her any other pain meds. The morphine they were giving her was not lasting until the next dose, and she was in pain a lot.

We called in an oncologist to get an opinion on the best route to take. We had already been told that she would not be able to do much treatment because of her age, the fact that she had just had surgery and also the fact that this is a very aggressive cancer and chemo would not do anything. We later found out (I mean DAYS later) that the oncologist (who came in when no one was with Aunt Mary) told her she had cancer. This may explain a lot.

Aunt Mary never really became coherent again. We knew she could hear because when we called her name she would open her eyes and look at us. We could get a response every now and then like she would squeeze our hand when we asked her too or something like that, or I tried to give her some ice chips (her poor mouth had sores in it from getting so dry) and she pushed my hand away. Little things like that, that would give us a glimmer of hope. For the most part though, she was unresponsive except for following us with her eyes when we were in the room. We did not know how much of what she heard she could understand though. We did not know if she knew there were people there with her, and who was there. We just knew she did not want to be alone. There were a few times when we came in in the morning or went to leave at night that she would cry, which made it really hard to leave!

So, we ended up with a surgeon that said she had over a year of quality life and an oncologist that said days to weeks, but definitely not a month. When I asked the surgeon about the oncologists prognosis he told me we were being misled. He said the oncologist was not there to see the surgery and that he had taken out all but a minute amount of the cancer that was on her stomach lining and could not be removed. He said he could not explain why she was the way she was - unresponsive and not improving. He said he was positive that it had nothing to do with the surgery (like a surgeon would say anything else) and that it was either a reaction to the morphine or she had given up and was not trying. He again pushed to get her off morphine. They had lowered her dose to where she was barely getting anything and she was in pain and actually doing worse instead of better. Decisions needed to be made about what to do for her. How do you make decisions on taking her off pain meds knowing she is still in pain WITH pain meds, nursing homes, hospice, etc. She was going down-hill at a constant speed. We could not get any straight answers and the drs were in COMPLETE disagreement. We decided to call in a second oncologist. We got one from a different group than the first one so we could get fresh eyes on the case. I was there when that oncologist came in. He was a very nice dr, very soft spoken and showed more compassion for what we were all going through than anyone else had. He sat down with me and explained what she had and how far it had advanced. He told me he had recently had a 38 year old male that had this cancer. He was completely healthy other than this. They did not do chemo because chemo doesn't do anything for this kind. He died within six months of getting it. He told us BEST CASE SCENARIO with a healthy person, 3-6 months. He said she was not healthy, she was trying to recover from surgery - which she would have to go through months of rehab with, and he did not feel she had more than a couple of weeks.

Our main concern with all of this was trying to control her pain. If we knew she had a chance at living a life she would want to live we would have helped her get off the pain meds, get up and moving. Out of four drs and a physical therapist, only one dr thought she could have some quality life left. The others all thought the cancer was taking her. They also did and MRI to see if she had had a stroke. The test came back showing she had, but we had differences of opinion on whether they were recent or old. Basically, they all felt like at this point our main concern should be making her as comfortable as possible.

Either way she was doing pretty bad. We were having such a hard time making a decision on what to do for her. No one wants to make a decision on someones life - especially someone you love. We thought back to what she did with Uncle Bill. We knew if we sent her to hospice she could get the pain meds to make her comfortable but she would get no nutrition. We spoke to the dr about whether she would know she was hungry or if she would be so medicated she couldn't tell. They said she would not know. She had to make the decision to take Uncle Bill off of nutrition. We felt if she could do that for the love of her life, that is what she would want. After DAYS of battling with the decision, we decided to send her to hospice and let her be comfortable.

Saturday, all four boys were up there ALL day. I was sitting next to her bed as one of us normally was, holding her hand. Isaac came and got on my lap and held her hand. He spent quite a bit of the time we were there holding her hand, telling him he loved her and she would be alright. Caleb was constantly telling her he loved her. Bryce was a little intimidated by it all the first time he saw her. After time he started getting used to seeing her though. I had warned the boys before the first time they saw her that she did not look like the same Aunt Mary they were used to seeing. I think that is what got Bryce the most. She spent a lot of time with her eyes open that day and a lot of time staring at the boys (she even "watched" some of a movie that the boys were watching in her room). Every time they spoke to her or touched her she opened her eyes.

The nurses had not wanted to move her too much at the hospital for fear of her getting pneumonia. Saturday morning she was VERY congested and choking. The nurse said the congestion was all in her throat (and later that afternoon in her chest). The ambulance came to take her to the hospice that evening. The congestion when we left was still in her chest, but that was it. It had not gotten in her lungs. By the time we got her to hospice (less than a five minute drive) her lungs were full.

We had planned on coming home that night to take care of things at home, but knew we would be back very soon. Paul and the boys said their goodbyes and went outside (after sitting at the hospital all day - the boys were pretty restless). Lindsay and I finished doing some paperwork. Before we left we went in to say goodbye. We told her how much we loved her and appreciated her. We gave her permission to go. She was always one to think of everyone else, no matter what she was going through. For example, the morning of her surgery, while we were waiting for them to come get her, she is in severe pain and discomfort and she is asking me how my parents are doing and how my sisters kids are doing. She knew Dad had a bad back and specifically asked how his back had been doing. We told her to tell Uncle Bill and Pepa that we love them and miss them and to take care of them. We spent several minutes just reminiscing on stories and things that she had done for us. As I gave her a kiss to leave, I noticed a tear coming out of her eye. She was laying kind of to her left side and the tear was coming out of the right corner of her right eye. This was not just her eyes watering. She heard everything we said! This gave me such a peace. After wondering for weeks if she knew we were there, after spending LONG hours at the hospital with her for a week, I knew she knew we were there with her! It did not matter whether she knew - I was there because I loved her and wanted to be with her as much as I could, but it gave me such peace to know that she knew we were there and I will NEVER forget that tear and the peace that I got from knowing that she knew she was not alone.

We went home. We got home at 1:30am. Lindsay woke up around 2 or 2:30 and felt like she needed to go back to the hospice. She went. When we left she was really struggling with her breathing from the pneumonia. At 4:10am, Lindsay sent me a text message that said they gave Aunt Mary a breathing treatment and she was doing better. Around 4:25 (Sunday, April 27th)she passed away. She was very peacefully sleeping. Lindsay was with her and said that her breathing just slowed until it stopped. The hospice was fantastic. One of the nurses stood in there with Lindsay and told her it was about to happen.

I (we) were at complete peace with her passing. Don't get me wrong, we were very sad and it really hurt to know that we will never see her again. But, she has been so unhappy for and wanting to see her husband and Paul's Dad. The hospice was playing Christian music for her (loudly so she could hear it). She passed away while listening to The Old Rugged Cross. That has always been a favorite of mine, but to me it was significant because that song was played at Paul's dads funeral.

We went back to Texas Sunday afternoon. The boys were sad, but I had told them when I told them she was really sick that she may not make it and explained that they would have another angel in heaven to watch over them and she would be in a better place with Pepa and Uncle Bill. I think that made all the difference with how they handled it. The first thing they said was that she was with her husband and Pepa and she was happy.

I gave them all the option of going to the funeral or not. They were all adamant about going. They went with us to plan the funeral. They were not great at the funeral home, but it had been a really long week for them, so I give them credit. Wednesday, they all got up and got dressed in the dress clothes (ties and everything). We did the viewing for two hours before the funeral began. I explained to the boys what to expect. Caleb has been to a funeral (Pepa's), but never to an open casket funeral.

When we got there, the boys went straight to see Aunt Mary. They did a great job making her look like Aunt Mary. The boys said she did not look like she normally did. I think it must have been the fact that she had lipstick on. Other than that -her hair and everything looked like her. We let the boys move around until the funeral began. We did not want to push our luck with making four boys sit still and quiet for three or four hours! Isaac wanted to stand at the casket the majority of the time. He wanted to hold her hand but her best friend (who lives in Houston and recently had a stroke and learned she had breast cancer so could not come to the funeral) had sent a bouquet for her to hold. He settled with patting her hands several times. He loved to snuggle with Aunt Mary before. Anytime we spent the night at her house he would sleep with her. I don't know who got the bigger kick out of that, her or him! Caleb and Bryce went up to see her several times over the two hours.

When the funeral started, the kids did awesome. I should add that Andrew went to sleep right as the funeral started and Bryce fell asleep within the first five minutes. That helps! Throw on top of that the fact that Caleb sat a few rows back with Nana... It was a beautiful funeral and the pastor did a great job of really summing up who Aunt Mary was. We, of course, had The Old Rugged Cross as one of the songs played. After the service at the funeral home, we had a short graveside service. She was buried next to Uncle Bill. They had one headstone with both of their names and "Together Forever" with intertwined wedding bands, a masonic symbol, and flowers on it. I thought it was such a great headstone for them and I was so glad she had picked that out beforehand.

After the graveside service, the funeral director pulled a rose out of the casket cascade for each one of the boys. They loved that and all wanted to keep them forever, so we dried the roses.

It is so hard to believe that on the 14th, she drove herself to the hospital. At 85 she still lived by herself, drove herself everywhere and did everything for herself. Then, less than two weeks later, she was gone.

The boys taught me so much over the past week. I was really concerned with how they could/would handle all of this. I think they did a better job than I did. They were so understanding of all that happened and so accepting of it all. They were very mature in how they handled it. I could not be more proud of them.

The boys still talk about Aunt Mary everyday. Anything from stories of things she had done for them or given them to talking about her death. It is a little harder for us to keep talking about it over and over, but at the same time, we understand that this is new to the boys and they are trying to understand it all. I don't want them to quit talking about her, she is being kept alive through them, and I think that is awesome. I hope she knows/sees what a difference she made in their lives and how appreciative I am for that!

I have never been through anything like this. I have never watched someone die or taken part in planning a funeral. It is hard! It is exhausting, physically and emotionally. There were several times I wished we were not the adults having to make such hard decisions, but that we could let our Mommy's and Daddy's do it. Not that it would be any easier for them to do!

We went to Aunt Mary's house to find some information that the funeral home needed. We found a Bible in her room. I knew she had a very strong faith and that she sent people cards with verses in it, etc. I knew her favorite verses in the Bible was Psalms 23 (which Lindsay read to her a LOT in the hospital). But, when I was going through the Bible looking for family information, my heart broke and swelled with pride at the same time. I found a letter she had written to Uncle Bill not long before he died, but at a point where she knew he was almost out of time. It talked about prayers not always being answered, and her love for him, etc. I also found some pictures, funeral announcements, etc. for different people. One of those pictures was Caleb when he was a small baby. On the back of each picture or funeral announcement was a verse. Each one was different. How awesome!! I can't wait to see if and what verses are on the other pictures in the house!

We love you and miss you Aunt Mary, but we know you are in a better place, out of pain and with people you love and have painfully missed! You would have been so proud of the boys and they have not stopped talking about you! I hope you knew that you were a grandmother to us and the boys. I don't think we told you that enough when you were here, but I did tell you a lot of times while I was sitting at the hospital with you. We love you very much and appreciate EVERYTHING you did for all of us and all of your thoughtfulness. You are definitely one of the strongest women I know and have been through so much! You awe me and inspire me. I hope I can be as much as a woman as you were when I am 85!