The Highest Hurdle

  January 31, 2018

  Today was a difficult day. Terri weighed MaryFran and she weighed 98 lbs. She is also very stressed about finances. Having ALS is not cheap. Insurance hardly covers anything. When I came at noon to help, she had been crying quite a bit this morning and was finishing her lunch. She loves to have the massager on her limbs, so I did that. I helped Terri with dishes, laundry, and the mail. I worked on putting the newspaper sports clippings of her kids in a scrapbook for each of them. She had a couple of visitors come, and when I left I felt an overwhelming sadness.

  February 1, 2018

  Today was a really good day. She seemed much better. It was nice to have her to myself for a couple of hours. I read her the intro I wrote for this book. She made me do it even though I protested, as I didn’t want to cry. I made a promise when she was diagnosed that I would be the strong, stoic friend. She asked me why I didn’t want to cry, and I told her I promised myself I wouldn’t for her sake. Fran told me sometimes it’s good to cry. She said, “I want you to cry, so read it.” So, I read it and cried, and it was really, really great. Of course, she smiled while I was crying and reading! We talked about what she wanted regarding the book. We were watching some cooking shows featuring super bowl foods and suddenly she wanted wings. I texted Deanna and she picked up some. Deanna showed up and it was like old times with the three of us. We talked about when we were younger and reminisced about the things we did. We actually got her laughing out loud! Deanna and I felt like we at least got her mind off her disease for a little while. I asked her if there was anything she regretted, or if she could go back, would she change anything? She thought for a moment and said no. Because at the time, she said, she had no way of knowing if it would help. She told me that the things she thought helped control her symptoms the most, such as muscle twitching, were the ketogenic diet, acupuncture, and massage. She said that she wanted to try different treatments so that if she found something that worked, then no one else would have to go through having this disease. When I left that day, I had mixed emotions of happiness and sadness.

  February 5, 2018

  From Carole’s notes:

  Dr. Velugubanti prescribed Vitamin B12 1,000 mcg, 1 tablet 1× a day, and Feosol 325 mg, 1 tablet p.o. BID.

  February 23, 2018

  I stopped by for about forty-five minutes and helped Julie and Terri finish showering and dressing MayFran. She was so tired that all she wanted to do was lay in her bed, and she told me that they decided to call hospice. She has been having trouble swallowing and breathing. I laid in the bed next to her and I told her I thought hospice would be a great help, and that they offer many different services. Went to the basketball game that night and sat next to her, and she told me she’s very happy about the book and wants to see what all her friends would write about her. It was a buzzer-beater game and we won by two points! She looks so happy when she is watching her kids play! One of the things that drives me crazy at the games is people will come up and try to talk to her during the game or they pat her on the head. I try to tell them she is trying to watch the game. Everyone means well and wants to say hi. I try to run interference for her so she can enjoy the game.

  March 1, 2018

  Today was a good day. Came by at lunch to help while Andy was working. Lanette, Terri, and Jen A. were there. Fran looked pretty good. We went over some things for the book. I received a couple of letters and I read them to her, which she loved. Deanna stopped by and then she had a ton of visitors—Maggie, Melody, Robin, and Vanessa. We talked about her hospice visit a little bit and it went well. They are going to stop by several times a week, as it is getting difficult for a lot of the people in our group. We have a bedside commode now. Her neck is very weak, so when we lift her we have to cradle her neck and gently position her to a seated position on the couch. Then we need to put our hands under her armpits to lift her to a standing position. While she is standing, the second lady helps get her undies down and then we set her on the commode. We reverse the process when she is finished. It is almost a delicate dance. She is so tall that our shorter ladies have some difficulty lifting her. After a few hours with people coming in and out, she is absolutely exhausted. Even though it tires her out, she does not like to turn people away when they come to see her.

  March 20, 2018

  From Carole’s notes:

  MaryFran is having difficulty swallowing the fifty-plus supplements and Andy wants to stop them. Her mom is worried that she will experience a shock of withdrawal. Her mom has found some Chinese herbs that she thinks will possibly help. Andy and MaryFran agreed to try them, as they are fewer capsules to swallow. She is having trouble eating, not sleeping, upset stomach, and anxiety.

  Jun Song is the owner and founder of Herbal ALS Classic Herbal. The capsules are “HerbalMN” and “Balance.” There are strict instructions regarding temperature and diet. You have to have lung function tests before and during use. They are from the Netherlands and not FDA approved.

  From Carole’s notes:

  MaryFran feels worse every day. She has increased weakness, shortness of breath, a lot of twitching in her muscles, sweaty palms, heat radiating from her arms and spine. Her mom’s observations are increased food intake, though not to what Dr. Song wants. Daily bowel movements, less choking, stable walk with support, voice stronger at times, not as wispy. Amount of urination increased.

  The doctor states if she cannot gain weight, she cannot help Fran. Her mom tries to feed her at night, “giving it the old college try.” She is down to 90 lbs. (There isn’t a date on this entry so I do not know where in March or April this has occurred).

  March 28, 2018

  Hospice came in for their initial visit. They went over with them what they can do for her care and the services they offer. I was not present for this visit. Apparently, it is not what we thought. They do not provide home care. The nurse just stops in to check on Fran. If Andy gets a nurse, he will have to pay out of pocket. Insurance does not cover the expense. I seriously cannot believe how people can live with this disease and not have a support group. The care is so demanding for one or two family members! The costs are astounding and almost nothing is covered by insurance.

  April 11, 2018

  Stopped by and Cheryl was cooking. Always smells so good when Cheryl is there! Kim S. was helping out, too. I had to share a couple of stories with Fran. I really feel that the Holy Spirit was moving through me the other night and had to share it with her. She really seemed at peace today, much better than last week. I shared my story with her and she told me she was proud of me. I told her I spoke with a publisher and she was really happy. Deanna and Lisa were coming by later to stay with her for the evening, as Andy was taking Megan to have a college visit at Hillsdale College

  April 18, 2018

  We had a pretty good visit today. She was watching her beloved Detroit Tigers. Fran was very tired today. Her sister-in-law Nancy was visiting. I had exciting news to go over with her regarding the book! The publisher loved her journals! What’s not to love? It was taking a lot of effort for her to speak so I just went over details I needed to discuss going forward. She wanted the proceeds to benefit people in our area who were less fortunate and were diagnosed with ALS. McLaren Northern Michigan had set up a foundation in her name. Also, she wanted athletic scholarships at her beloved St. Francis Xavier School. I told her I would send the book to Oprah, Ellen, and Kelly and Ryan, and wherever else I could so that we could be best-selling authors and find a cure for this disease! This really made her happy. I told her to think about a title. She wants something inspirational but not sappy. Something to draw people in and get them to want to read it. So far, she loved everything I read to her and it really filled me with love. I spoke with Andy and he was really happy we are writing the book. He told me that she is the most positive person he has ever met in his life.

  April 22, 2018

  Father Denny gave a real great homily today about sacrifice. It was really fitting to our supp
ort group for MaryFran. He said sometimes when you are volunteering and sacrificing for others, you don’t realize that what you get in return is so much greater than what you are giving. I think our support group realizes that now that we are nearing the end, we have received so much more in return than what we have sacrificed in taking care of MaryFran. Our sacrifices have been time away from our families, which given the circumstances have been totally understood. Many of us have made other “sacrifices”—such as money, made meals, etc.—but he is so right in that what we have received in return is so much greater than what we have given. I think that was how MaryFran always tried to live her life. Think about how good you feel when you give someone something, anything!

  April 28, 2018

  Carole brought me a box full of stuff to go through. She is trying to help fill in the gaps. She has kept copious notes on some of her alternative treatments. Her love for her daughter is so evident. It is heartbreaking to see how hard she has tried to find a cure, knowing that it is basically a needle in a haystack. MaryFran interjects when she feels something is not relevant to what she wants for her story, and I feel it takes her mind off her illness for a while. As her mom shows me some pictures of her with all her medals and awards, I tease her about being a slacker and I finally get a smile. It gets harder and harder to get that smile, as she is getting so uncomfortable. Chanin comes to help with her hair and brings Brenda from her salon to help with her nails; it really helps MaryFran feel better.

  April 30, 2018

  We went through some photos with her mom today. Her mom found her early school photos, and I laughed uncontrollably at her expense. The typical 70s and 80s hair and clothes. In some of the photos, she looks like the total jock she was. I think we found the cover photo; it is a great picture of her when she was about three or four years old, and I absolutely love it. Her mouth is open in a laugh that is so MaryFran, and her daughter Megan could be mistaken for her. MaryFran dreamt she had the title of the book. “Jesus Is Stuck in My Gums.” I almost fell off my chair laughing. We are always helping pick stuff out of her teeth, and in her dream the communion wafer got stuck. Catholics believe that when the host is consecrated it is the body of Christ. She thought people would definitely pick it up to see what it was about.

  She wants me to help Terri with Danny’s graduation party. She wants the party to be about him and not about her and ALS. I told her that I will help Terri and we will send out an email to the group and do whatever she wants. I told her she does not need to worry about a thing.

  I never thought I would do some of the things I have done for MaryFran. Today I changed her tampon and it wasn’t a big deal at all, because I look at her and think, as hard as it is for me it is worse for her to even ask me. My goal until she dies is to make her laugh every time I come visit. I pray every night that she dies in her sleep, so that she does not have to endure this any longer. I have never once heard her complain. Several times she has said that she believes God has given her this diagnosis to spare others from it.

  May 1, 2018

  Deanna and I spent the afternoon with Fran while Andy worked. Her parents were just getting ready to head back home. We found the bin with a lot of her college and high school memorabilia. It helps keep her occupied, and it is fun to reminisce. We teased her about being a slacker in sports in high school when we found the article about her being inducted into her high school athletic hall of fame. I got her to laugh over some of the photos, which was great because earlier, when I was feeding her a shake, she told me she just wanted everything to be over. I told her that I prayed every night that this would end for her; that actually made her happy and she told me, “Thank you.”

  May 2, 2018

  MaryFran asked me to sit in on the phone conversation with Dr. Song. I really don’t agree with what is going on after researching her website, but it is not my journey. Andy has refused and feels that he just does not know what is in the pills and has justifiable concerns. I agree with Andy, but she is begging me with her eyes, so I do. She tells me what to write down to tell her and we wait patiently for the call. MaryFran is only able to swallow four of the five capsules and the doctor is unhappy with that. She is able to follow the instructions regarding clothing, temperature in the home, and trying hard with the food recommendations. The doctor is insistent on the pulmonary function test. That is the only way she can adjust the dosage. I tell her we will try to get a home test but we need to get a doctor’s order for one. My personal belief is that she cannot physically do it. I tell the doctor that she is now unable to leave the house but she doesn’t seem to understand. She keeps saying how important this test is. She wants her to get another weight. I write everything down for her and tell her husband. He says he will try to locate a home pulmonary function test.

  May 3, 2018

  Deanna, Cheryl, Lynn, Gina, and I had to have a meeting with MaryFran. Many of our group have now become uncomfortable with her care. She takes it much better than we expected and does not want to make anyone uncomfortable and does not want anyone here who does not want to be. We discussed ways to improve our group and how to help the family better. Deanna did a couple of Bible readings and they just happened to fit the moment. Funny how that happens. She seemed much better today, but Deanna and I noticed that she does not like to be alone. Every time we stepped out of the room for a second, she was constantly calling us back in for little things. I kept telling her that we were here for her and that she has always been a sister to me and I will do whatever I can to help her. Gina and I talked to her about her funeral wishes, and she told us that she hates bugs and does not want to be buried! She is thinking that she might want to donate her body to ALS research and asked me to look into it, as long as it the Catholic Church teachings are okay with it. She would like the care group to have a party and drink margaritas and tell great stories about her after she is gone.

  May 4, 2018

  I stopped by to see if Andy needed any help; Fran was having a rough morning. It was a torrential downpour and she was insistent on going to acupuncture. Andy did not want to take her out in the rain. MaryFran is pretty stubborn. She agreed to cancel it but then started crying and told me that she really needed it today. She feels that it really relaxes her and helps with some of the symptoms, like the muscle twitches. I told Andy that I will help get her there and I will hold the umbrella over the wheelchair. She looked so desperate that I just could not tell her no. While I was feeding her a breakfast shake, she just broke down crying and told me how upset she was that she was going to miss her kids. I told her that she would be watching them from heaven, just like my dad did for me. I shared with her that after my dad died, for many years I had vivid dreams of him and he was perfectly healthy. My dad never met my children and I told her I had dreams of him with my children doing all the things that he loved to do, like fishing and hunting and holding them after they were born. They were so vivid that when I would wake up it would take me several minutes to remember that he wasn’t alive. I told her that I know that God will work through her and her children that way. It really helped to calm her down. I stroked her arms and cried with her. I told her that her kids were going to be fine and that she and Andy have done a great job raising them.

  I think she knew this would be the last time she would be able to leave the house. Andy got her in the car and I helped stabilize her neck while he put on the neck brace. It is amazing that she could still walk with assistance. Someone has to hold her from behind and steady her as she takes steps. He loaded the wheelchair and I grabbed the umbrella. I followed him to the office, and while he got her into the wheelchair I held the umbrella. We wheeled her in and got her settled on the table. She asked me to stay and kept telling me thank you. She looked so sad and frail. I stayed until they started the treatment. This was the first time that I felt such an overwhelming feeling of hopelessness and unfairness of this entire situation.

  May 10, 2018

  Cheryl E. is teaching a few of us MaryFran�
��s bathing routine. She bathed her in bed and is very careful to do one limb at a time, so she won’t get cold. She uses a special inflatable sink for washing her hair. There is a special lotion to use on her bony prominences to prevent bed sores. She gets a foaming body cleanser called Medline Remedy that you do not have to rinse off. We need to have a couple of people as backup. Deanna, Lynn, and I offered, as we now feel we must do “whatever it takes.” She told us that when she is given her sponge bath, it makes her feel like what Jesus must have felt after he was taken off the cross and was washed. I told her it makes me feel like Holy Thursday, when the priest washes everyone’s feet. She says that she just pretends she is royalty, like in Downton Abby, and all of us have to dress her. If she doesn’t think this way, it really makes her crazy!

  May 11, 2018

  I spent the morning with MaryFran, planning her funeral. I told her that she has the luxury of knowing that she was going to die soon and the rest of us don’t know when we are going to die. We are all going to die and I know how much she likes to be in control, so why not plan it? It was actually quite wonderful. The Catholic Church provides a nice booklet on different readings to choose from. I went through it a couple of days before and highlighted the ones I thought she would like. We discussed some of the readings and actually laughed about a few of them because we thought they were odd choices for a funeral. She asked for my input on one or two and I think we did a pretty good job reflecting her in the choices. We chose her favorite songs and picked out who she wanted to read and sing. Her son does readings at church and she would really like for him to participate, but I told her although he is a good reader I was worried that he might not be able to hold it together. We thought she should have a backup, just in case. She asked me, as I also do readings at church, and I honestly told her I didn’t think I could hold it together. She looked at me and she said, “I know you will be able to do it.” She also wanted her sister to read, hoping she would be able to do it. If not, we have a backup for her. Her niece is an amazing singer, as is one of our girlfriends, and we are going to ask them to sing. It was very important to her that I tell our priest that they not say that she fought ALS. She said it absolutely drives her crazy. We joked that I would tell them that if they say that at the funeral, she will come back and haunt them! She also wanted to include a special intention for all of the friends and their families who helped take care of her throughout her illness. She made me promise that I would make sure there would be a special Frantabulous Friends memorial party, where we would drink margaritas (her favorite) and tell stories about her and celebrate her life in a positive way. I told her if margaritas were involved, I would absolutely make sure it would happen!