November 16, 2012

There are few days in your life that truly stand out in your memory forever. My wedding day is one, and the days when my children were born. For me there are 2 days that are burned in my memory as the worst days of my life. The first is July 21, 2011. That was the day my Mother was diagnosed with ALS. It was the day we knew that it was only a matter of time and through a painful process that we were going to lose her. I was devastated, not knowing how I could survive without my Mother.

On November 16, 2012 that fear became a reality as we lost her to ALS.

I kept a journal about the last week I spent with her through her funeral and I'd like to share that on my blog so that I have two copies of it in case something ever happens to my written copy.

November 26, 2012

"I wanted to write down everything I can remember about the last couple of days with my Mother. Even though I knew that the possibility was becoming more and more real, I wasn't prepared for the events of 11/16/12.

I went down on Tuesday as usual. Luckily Chelle had Myla that day. When I got there Mom was just getting up. She hadn't been sleeping well. The maids had been there the day before and had put everything back in the wrong place. Laura had helped her put the stuff in her bedroom back together. She told me to be patient with Mom because it was hard to know what she wanted but it was very important to her that we fix it.

I took her into the great room and helped her to stand so she could show me what needed to be fixed. Once we got it all put back together she wrote on her iPad "shall we shower".

Showering Mom was one of my favorite things. The first couple times I did it I was uncomfortable but once I did it with Jenny I felt better about it. At that point I was helping her with everything. I helped her undress and turned on the water. I waited in the bathroom until she was ready to have her hair washed. I made sure all the doors were closed so she would be warm. I washed her hair and made sure not to get the water in her eyes.

She said she liked it when I ran the water down her back and over her shoulders. They were so skinny, all the muscles were gone from her arms. When I was done washing her hair I wrapped her in a towel and patted her down. I got another towel and dried her hair and face. I patted her body down to make sure I got her legs dry. Once she was dry I put her lotion all over her legs and arms and face. Next up was her garments and the dreaded bra! We always made jokes about how hard it was to put on her bra and make sure everything was where is was supposed to be. 

I was wearing sweats that day because we were going to watch a movie but of course Mom wanted to wear jeans and cute clothes. She refused to look like a shlump-a-dink. Laura and Jenny were there to watch "Bridesmaids" but we couldn't find it. I don't think it was a coincidence that her last movie was "Emma" instead of a dumb movie like "Bridesmaids". 

While I sat on the bed watching the movie I peeled the gel off her nails. Then I trimmed them and filed them. I felt so bad because I cut the tip of her left thumb with the clippers! She just flinched and I saw the blood. It was awful! I felt so bad and she was just smiling and me and giving me the thumbs up. I kissed it over and over telling her how sorry I was.

She was so sick that day. Lots of coughing and suctioning. When Dad got home I told him how sick she was. He was always so sweet to her. A lot of kisses and kind words. I'm not sure when it was exactly but we had a great talk with Mom a few weeks before. Dad and I discussed how awful it was to watch Mom suffer. We talked about how we didn't want her to hang on when the time came because she was worried about us. We have been grieving since the day of her diagnosis. We grieved all along as she lost the ability to talk, eat, walk, etc. It was a good conversation.

Tuesday night I stayed long enough to get Mom ready for bed in her pink pjs and I brushed her hair and pulled it up for her. She slept better with it up. I also helped her get her clothes out for the next day. There were going to the clinic at the U. I kissed her goodbye.

I didn't see her on Wednesday or Thursday but I texted her to let her know that I wasn't about to let the hospice people take away our shower parties on Tuesdays.

Friday we were going to Orem to drop our kids off to Laura so we could go to the cabin with friends for the weekend. We stopped by the house and I'm so glad we did. Jenny was giving her some medicine when we got there and she looked at me shaking her head because Mom wasn't doing well. I ran out to the car and asked Logan to take the kids so I could stay there with Mom. She wanted to watch TV so I sat on the arm of the blue love seat and rubbed her arm while she dozed in and out. She was really out of it. She said she had a headache so Judy Richards rubbed her temples while I tickled her arm. We had to suction her a few times because the saliva was so thick.

Logan came back and Dad came home. We sat with them visiting in the great room for a while. Dad talked about quitting the temple on Friday nights and even though she was half asleep she chimed in to let Dad know she didn't want him to give that up.

When we got ready to leave I went to Mom and kissed her cheek. I told her I loved her and kissed her again. She gave me a thumbs up (telling me she loved me too) and I held her hand and kissed it again. I want to mention that I had Rife give her a kiss on the cheek that day as well. I was reluctant to leave but it was time.

Logan and I had lunch at Tuchanos. The food was good but I believe that restaurant is ruined for me now. After lunch we headed up the canyon. We got to Heber and stopped at Walmart to get groceries for the cabin. I can't believe I was wandering through Walmart as my Mom was at home dying.

As we were loading the car my cell phone rang. It said "Rife Home" and I knew immediately something was up. I answered quickly and Jenny simply said "Mary you have to come home right now! Mom died, she's dead." I hung up the phone totally bewildered. I started throwing the bags in the car and looked at Logan in shock. He asked if we needed to go and I said "She's dead. My Mom died." He ran around to hug me and I fell apart, sobbing against him. He helped me into the car and took off towards home. I sobbed and sobbed all the way down the canyon. I cried "no, no, no Mom" over and over again. As we got closer I started to panic and it was hard to breathe. I just had no idea what I was returning home to. As we got there I told Logan to get the baby and I ran inside. 

She was laying on her bed with her head tilted back and her mouth open. The color was gone from her skin and I knew she really was gone. I threw myself on her, hugging her and crying "No Mom, no Mom". I fell to my knees and held her hand crying harder and harder. I felt Logan's hand on my back. I didn't want to let go of her hand. Brian came in and I moved so he could have a moment with her.

The people from the mortuary got there and they needed us to say our final goodbyes. Dad asked us to kneel around the bed while he said a family prayer. I held her hand, caressing it as we prayed as a family. After the prayer the girls took off her jewelry and the people came to take her body away. I followed her out to the car, not wanting to say goodbye. Once they were gone there was a strange void and I felt bad for her that she was leaving with those strange people while all of the people she loved were at the house together.

We all sat in the sitting room a bit in shock. Laura's friend was watching all the kids at Laura's house. We decided to go over and tell them the news before bringing them up to the house.

We were nervous to tell them. Sophie took it the hardest of anyone. She wanted to know why it was our Nana that had to die. They came to the house and hugged everyone. Clyda and Judy showed up with lots of food. It was perfect.

We sat in the sitting room as a family laughing and crying together. It was a strange night with Mom gone to the mortuary and all of us together.

We called Michael and were waiting for his call. When he called I sat in the office with Dad, Hillary, Jenny and Trevor. We cried as he cried asking Dad what he was supposed to do now. It was his choice wether or not he wanted to stay there. Dad told him to talk to his President and sleep on it before making a decision.

We slept downstairs but I woke up at 4 am because I saw Dad's light go on. I had been checking on him through the night making sure he was asleep. He was in his office so I went in there with him. Jenny was awake too so I was texting her. Dad's phone rang and it was Michael again. He still didn't know what to do. We talked for a while explaining that it was his decision.

Later that day we went to the mortuary to discuss the funeral with the director, Phil. We picked out a vault and designed the casket. We decided to do the viewing on Tuesday Nov. 20th and the funeral on Wednesday Nov. 21st, the day before Thanksgiving.

After that we went to the florist to order the flowers for the casket. It felt good just to be together. That night Jenny decided to stay over and we slept with Dad. She slept in the middle and woke up really hot because Dad was holding her hand with his other hand over her head. That's how he used to sleep with Mom. She would hold his hand so she could get his attention if she needed to. And he held her head to make sure she was still warm.

Sunday I decided to go to church with Dad. The kids had gone to the Brains for the night. We spent the day together, you could tell we were a bit afraid to separate. Mike called again and wanted to talk to all of his sisters. He was just so confused. He finally decided to come home.

Monday morning we went with Dad to the cemetery to choose a plot. Then we went to Springville to design the headstone. After that Dad had lunch with his work friends so the girls headed to the mall to find clothes for the viewing and funeral. Laura had said to Mom a few weeks ago that she wanted to have everyone wear blue to the funeral and Mom agreed that was a good idea!

That night I was the only one that stayed at the house and I slept with Dad again.

Tuesday we were scheduled to go dress Mom at 10. I was a bit nervous because I didn't know what to expect. We all rode together and met Gram outside the mortuary to say a prayer before we went inside.

We met Phil and he showed us the casket. It was navy blue with gold trim and white interior. That's exactly what Mom asked for. Then he took us into the main room where Mom's body was. All my nerves disappeared as I saw her body peacefully laying there. I knew she was gone. But that beautiful body that I have spent the last year caring for was there and I had the opportunity to care for it once more.

Phil was great. He helped us put on her temple clothes. As I stood there holding her legs as we dressed her I found myself caressing her the way I always had. I had such tender feelings for the sweet woman she was as she suffered in silence. 

Once she was dressed Phil directed us as we put on her makeup. I was nervous that she wouldn't look like herself. But we did a good job and next we did her hair. Judy had styled it the day she died and it still looked pretty good. Her bangs were crazy though and I tried hard to fix them. I ended up cutting more so they would lay right and felt guilty because she had been growing them out. While Laura worked on her nails I kept looking at the sore on her thumb I had caused just a week before while cutting her nails. It broke my heart when it happened and broke my heart again that day.

Once we were all done we looked at her and she looked so beautiful. We placed her in the casket and took a picture with her. 

  

We went home and loaded up to head to the airport. I rode up with Dad and Laura. We were all very anxious to get there and see Michael. The airport was great! We had a banner with Mike's picture on it and balloons. He looked so handsome when he came down the escalator. Dad hugged him first and it was a sweet moment.

  

 

  

I rode home in Dad's car with Laura, Jen, and Mike. It was crazy that he was actually home. When we got home it was time to get ready for the viewing. Jill had offered to watch all the kids which was a tremendous blessing. We got there about 30 mins early and within 15 mins people started showing up.

At one point the line was clear out to the parking lot and remained that way until well after it was supposed to be over. We brought a table full of things that represented Mom. The display looked beautiful, I'm sure she would've been proud.

It was amazing to see all the people who came to support us. All the members of the old ward came and it was great to see everyone. It wasn't until I looked down the line and saw my friends that I fell apart. First I saw the Browns and the Flittons. I cried as I hugged them feeling of their love and support. Next I saw Nicole and Jeri. As I hugged Nicole and she cried with me whispering in my ear how sorry she was I was overwhelmed with how much love and support she has shown me. I was overwhelmed with the thought of how many hours both she and Jeri have spent serving me so I could be with Mom and how thankful I am for that great blessing. I hope some day I can show them how thankful I truly am. 

There were many missionaries there, sealers from the temple, temple workers who worked with Mom, and so many wonderful friends. Even Ashlee Jensen and her mother came. Once the line finally went through we realized how starving we were and decided to grab some dinner on our way home. We stopped at Taco Amigo for a very fancy meal of burritos and fries. We tried to get to bed quickly

because we had to get up early for the viewing and funeral.

The next morning we got everything ready and went to set up. We brought the table of decorations again but this time we put out the jewelry Mom had requested we share with her loved ones. 

  

Before the viewing started Angie De St Jeor stopped by. I have been friends with her on instagram and kept in touch better recently. It as very nice of her to come. Once the viewing started there was immediately a line all the way down the hall. We had to break up the line because it was taking too long. There were many more friends, ward members and family members that came that day. When it came time to say the family prayer I started to get nervous. I knew the hardest part was yet to come. 

Michael gave a beautiful family prayer and set a great tone for the rest of the funeral. They asked people to come say goodbye and I watched as all of our family members came up to the casket. When it was our turn I felt my heart beating out of my chest. How could I say goodbye? (When I took Myla up to see her earlier she said "is Nana sleeping?" and I told her she was. Then she said "I wake her up, I say BOO!" It was so sweet.)

As we walked up and took off her jewelry and put on her vail I felt so incredibly sad and scared. Scared that I would never see her again. Even though she wasn't with her body anymore, her body was all we had left and it was time to say goodbye.  I caressed her head and softly whispered bye to my Mother. I told her once more that I love her. It's a strange feeling as they close the casket because you think they can't breathe in there and that it's too dark. I know she's gone and can't feel anymore but I still had those thoughts. 

Once we were heading in for the funeral I looked over and saw how full the building was and my stomach dropped. Not only did I have to get up in front of everyone but I had almost forgotten and wasn't mentally prepared.

I'm glad I was at the beginning so I could get it over with and enjoy the rest of the meeting. I made an opening joke about how much I hated speaking and was only doing it for my mother followed by a comment about how I'd rather get up and do a jig than speak.

I read the obituary almost flawlessly including my own insert about Dad and his care for Mom. The rest of the meeting was beautiful. Laura and Dad gave beautiful talks. Myla was in the back with Judy and that was a blessing.

We were greeted by many loved ones outside the church after the meeting. Almost all of Logan's family was there. We visited for a bit and then loaded up to drive to the cemetery. The dedicatory prayer was give by Gramps and beautifully done. I made it through without a tear. I was beginning to think they were all gone. But as people started leaving I found myself standing by the casket unable to move. In just a few hours they would bury her and I'd never see her again. At least not in this life. I just 

couldn't leave.

   

  

  

I took some flowers from the casket to save and they are hanging in my room. It was done. She was gone. The most horrific 16 months of my life watching my strong, independent mother slowly digress was torture. And now it was over. It's a strange feeling. Like you don't know what your purpose is anymore.

We stayed down that night for Thanksgiving the next day. We even went to CPK for dinner while the kids were skating with the Parsons. The next few days are a blur. All I know is, I didn't want to leave. I didn't want to get back to real life. I knew I would have to eventually but I wasn't ready."

January 18, 2013

"So now here I am . . . 2 months and 2 days later. I honestly can't say if I'm better or worse. I think the sting of seeing her so ill has worn down and now I'm mad that she's gone; mad that she was sick in the first place. How did this happen? Why did it happen? How do I move forward and not feel guilty about it? Part of me doesn't want to. I want to be sad and miserable forever. But that's not right. That's not what she would want for me. I have children who need a mother. Just like I did. Like I still do. I am trying to find a way to be there for everyone else in hopes that it will help me heal.

I've tried hard to be there for Dad. I tried very hard to be there for Jenny when Copelyn was born. I tried to support her the way Mom was always there for me."

That is the last entry I wrote. I just wanted to document it so I would have it forever.

This picture was taken at Jenny's baby shower. It was our last picture taken all together.