Talk for IPF Summit 2017, University of Louisville
Image above: Ruth giving her testimony at the 2017 UofL IPF Summit
Good Day Everyone.
My name is Ruth O’Bryan and I have the distinction of having been a caregiver for 15 years for a chronically ill patient and now I’m the patient; and today, I’m going to be talking about what I learned as a caregiver as well as the patient perspective of dealing with a chronic life threatening illness. How many here are patients, how many are caregivers? I fought for 15 years alongside my husband as he battled prostate cancer and in March of 2016, I was diagnosed with IPF. So, I have walked on both sides of the street so to speak. I also facilitate the caregivers support group for the UofL Air Benders group.
My husband was diagnosed with prostate cancer at age 55 and went through surgery as well as multiple chemo, and radiation treatments. He also developed hydrocephalus which required a brain shunt be put in as well as three revisions within a three-week period when the shunt stopped working. In addition to that, he had a knee replacement. While reviewing his records one day, the doctor asked him a question about when a procedure was done and my husband turned to me and said “when did we have that done?” The doctor chuckled, and I asked him what he was laughing at and, “He said your husband said we.” I said, “You better believe it, I have been with him through it all!” I went to all of his doctor’s appointments, most of the chemo treatments and slept on various uncomfortable reclining chairs and one leather couch for a week that wasn’t too bad during his hospital stays. I also usually didn’t get home until the wee hours of the morning when he was admitted. I just loved it when they would tell me in the emergency room (at 10:30 or 11 by the way) that they had to wait to get him in to the room because someone was moving out and they had to clean the room. We all know it was a shift change. I’m not complaining, my wedding vows included for better or for worse and in sickness and in health.
After the diagnosis, my husband agonized over what course of treatment he should pursue. Surgery, radiation, seed implants? We wondered around praying for God to let him know what to do. I gave him reams of paper with different options. But he never really looked them over. He didn’t want to face it. He somehow decided to have radiation treatments and had gone in to have the tattoos done. He came home all in a tither as he said “you know the technicians had to lift my gown and tattoo me. They don’t look like they are even out of high school. It was embarrassing.” I told him, “those girls are well out of high school and they have seen it all believe me. If you want to know what embarrassing is, go have a baby.” Right ladies!!!
So he then had to go back to the urologist for his hormone shot and the urologist said, “You’re not a candidate for radiation treatment, your Gleeson score is too high. You need to have the surgery!” A person I worked with said, Ruth, you were asking for a sign, that’s it! Now caregivers, what I learned from this experience was. 1. You can’t fix your loved one. 2. You can’t make the decision of the treatment they will pursue. I wanted my husband to have the surgery right from the get go, but I didn’t say anything. Do you know why? (A) It wasn’t my life or my body. (B) I didn’t want to tell him to have the surgery because one of the side effects could be incontinence, and I didn’t want to spend the rest of our lives with him thinking (he probably wouldn’t have said it) but would have thought it — “if she hadn’t talked me in to the surgery, I wouldn’t have this problem.” Anyone who has been married any length of time knows exactly what I’m talking about. It would be like the Adam and Eve thing. “If you hadn’t made me eat that apple!” 3. You can’t take ownership in your loved ones illness. You can’t feel guilty because they are sick and you are not.
Now we have gone over what you can’t do, let’s focus in on what you can do! You can support them, love on them, listen to them, go to appointments with them, you can take notes, help them research things, and you can be their coach. You can try to encourage them to eat properly by supporting any nutritional changes in their eating habits. In our support group meeting this month, we talked about helping the patient when they are in a breathing panic. Being their coach like one does when coaching a woman who is having a baby with breathing. You can do the same thing for an IPF patient. Now my husband developed diabetes and I tried my best to keep him from overdoing with the sweets and trying to eat a diet that would help his body stay alkaline, because cancer, as you know feeds on sugar, but it was a battle. I have been told that he lived at least seven years longer than he would have if it hadn’t been for the pit bull with lipstick trying to make sure he ate right and made all his appointments, and that the treatments he was given were on course according to the protocols being used for prostate cancer at the time. But I have to tell you, it does take its toll, so patients try to help your caregiver out and try to be compliant when it comes to your health. Listen to the things that you are told to do by your physicians. And I will also tell you that neither the patient nor the caregiver should feel ashamed when seeking professional help in dealing with the situation. It’s not easy for either person. I asked a man whose wife had died of breast cancer and he had remarried a woman whose husband had died of prostate cancer and this man had been diagnosed with prostate cancer… I said you’ve been on both sides, which is easier being the caregiver or the patient, and without hesitation he said “oh the patient.” I’m not saying this to make you patients feel guilty. It’s hard for a caregiver to see their loved one suffer.
Now patients, I’m going to address something with you all that is very important. Does anyone know what the greatest gifts you can give your loved ones? One of them, usually no one wants to talk about, is final arrangements. My husband was the ultimate fighter and continued on until our twin grandsons were born, and then a week and a half after that, his body said “I’m done.” He fought to see those boys and then the complications from a final procedure were finally too much. He died in November 2013 two months shy of our 46th wedding anniversary and we had dated two years before we got married so we were together for a long time. I never brought up final arrangements all those years 15 years because I didn’t want him to think that I thought he was going to die soon. Finally the May before he died, (with I feel, the prompting of the Holy Spirit) I told him “we need to take care of our final arrangements.” I told him, “I could die before you do,” and I almost did. That July, my stomach went up through my hiatal hernia and twisted and I had to be rushed to the hospital and had emergency surgery performed at 11 p.m. on the 4th of July. The doctor nicked my spleen and couldn’t stop the bleeding and had to perform a splenectomy. So I am spleenless. My niece that has no filter said, Ruth when that happens to dogs or horses, they die. Because that May, we had done our final arrangements except for the obituary, the process in November was much easier on me than it would have been if we hadn’t. A few months ago, in my Sunday School class, we were in Genesis in the part where Abraham was grieving over the loss of Sarah and we talked about the funeral process in those days and the teacher asked if anyone had had a bad experience with funeral homes. One person raised their hand and said “yes we had gone to check on arrangements and when we finally needed them, the price had gone up. In case you don’t know, you can lock in the cost if you either pay up front or make payments. He asked if anyone else had had a problem and a woman raised her hand and said “yes, when my mother died, they tried to sell us a flood insurance policy on her plot.” (You can’t make this stuff up folks) My arrangements are taken care of.
The other things to take care of are the legal documents like a will, a power of attorney, medical power of attorney, a living will so your wishes will be carried out and your family members don’t have to make those end life decisions. Now there is a Christian Legal Aid Society that can help you with everything I believe but the will. I asked an attorney about Legal Zoom and he indicated that wasn’t a good idea. So you will need to have an attorney do that. You can find one on line, type it out and have your wishes put in there and then take it to an attorney to be checked at a nominal fee.
The other thing I would encourage you do is help your family by clearing out the junk in your home. Get rid of anything you can so your family members don’t have to do it. It would most likely fall on the caregiver. I retired a year ago this past April and I spent all last summer and half the fall with the help of a friend getting rid of stuff. We worked a few days a week for a few hours, and I am down to the basement and the garage. I don’t want my kids to have to do it. My youngest daughter has thanked me at least 5 times already because it would fall on her.
Folks, this stuff shouldn’t be looked at as gloom and doom, it should be looked at as the best gift you could every give your caregiver and your family. I can tell you that it feels so good to get rid of stuff. Stuff you don’t need that somebody else can use.
Now I’m going to talk about being a patient. I was diagnosed with IPF, as I said in March of 2016 after a lung biopsy definitely indicated that I have IPF. How am I dealing with it? Same as you patients. None of us are guaranteed tomorrow. I know that intellectually, but it didn’t really hit home for me until I had the emergency surgery that happened out of nowhere.
I’m going to give you some advice that has cost me and you’re going to get it free. I see a clinical psychologist and have for quite some time, and he has told me to stay in the here and now and don’t go out there beyond today. I know that when I do, it gets very scary. Another piece of advice I can give you is that when you go in to that spiral of fear and anxiety, figure out how to get out of that spiral write it down on a card and then when it happens again, go back to whatever it is that helped you out and recreate it. I know it’s so frustrating to not have the energy to do the things you used to do with ease.
What I will tell you is this, to help you through the coming years and months is to make memories. Take every chance you can to do things with your loved one or your family to make lasting memories that will sustain them. One day, I received a request from my great niece who lives in Maine. She sent me a letter with a paper doll character called “flat Stanley.” Now the purpose of flat Stanley was to take him around your city and take pictures to show off what your community. You know, all the places you take visitors when they come in town. This was a project so the kids in her class could learn about different places. I was still working full time, and I had a very stressful job which left me exhausted and on the weekends that was the time that I used to catch up with rest and regrouping. So when I had to use my Sunday to take flat Stanley all over Louisville, I wasn’t very happy about it. Well my husband and I set out one beautiful spring day when the humidity was low, the sun was shining and all was good with the world. We started out taking a picture of my husband with flat Stanley at the Bell of Louisville, the Colgate Palmolive clock, the bat at the bat factory, Stanley watched a barge go through the locks where we took a picture, then we went out to Churchill Downs where, at that time, you could go around to the backside without being stopped and we came across three men standing in front of the one of the horse barns where there was a beautiful horse looking out of its stall. So we got out of the car and I walked up to them and said “could you do us a favor?” One of the men, “that sounds ominous” and I told him what we were doing and wanted to get a picture of Stanley with the horse, so he told us he was the trainer of the horse and the horse was going to race on Derby day not in the Derby but during the day. “He then said, stand over here next to the horse, and maybe he won’t bite you and then laughed.” I kept thinking the whole time one of the guys was taking the picture that I was going to lose my right shoulder. We thanked them and then we went out on the track and took a picture of Stanley with my husband holding him again, and then took a picture of Churchill Downs itself, and went on our way to the next stop which was Fort Knox. I got the pictures developed and wrote a narrative of where Stanley had been and what he had seen and sent him on his way. I got a call from my niece and they loved it.
Now the purpose of this story is to tell you how much fun we had and what a wonderful day it turned out to be. I am so grateful to my great niece for sending me Stanley because that is one of the days I remember so fondly. So do things together that will make good memories. Even if it’s just a few hours. Do something or go somewhere that you have always wanted to do or go, that thing that is on your bucket list. One of the things that I did for my husband is to take him on the Red Baron bi-plane ride which he loved as we had seen it many times go over our house. I know that Mike Olson is working on his bucket list. One of the things he has always wanted to do is ride in a helicopter and WLKY took him up in theirs. We have all heard that old adage to “live each day as if it’s our last.” I used to hear that and think ya ya, but now I think about it more. I think we all need to do that. Remember we are only here on this earth for a nanosecond compared to eternity. So whatever happens, we are only walking through this life for a very short time.
Folks, we can’t let IPF define us, we just can’t. We need to get up in the morning and keep moving forward doing things that make us happy, make us feel complete. One of the best things we can do is write down for our children and grandchildren things about ourselves of who we are and were, where we were born, funny stories, etc. There are books out there for grandparents to write down where they were born, what they liked to do, etc. What a wonderful thing to do for your family. You can just get a plain notebook that will do just as well.
I know it’s easy to get depressed. Boy do I know that. I grew up in a “half empty glass” back ground and I have fought that all my life. Somebody told these things to me once and I have always remembered them. First, “the things you go through, make you who you are.” Second, “remember God doesn’t speak in negatives.” That has been one of the most poignant things anyone ever told me and I have to remind myself every day of that because Satan loves to attack you when you’re tired or when you are down or when you are at the end of your rope.” He’ll lie to you and bring you down. What I tell him is to get back to the depths of hell where he belongs in Jesus name and he has to leave you alone. It doesn’t mean that he won’t continue to come back, you just have to keep binding him off. The Third thing I would like to share is this story. I had a friend who was the chair of the radiation oncology department at the Brown Cancer Center who, incidentally ended up being diagnosed with IPF, and I asked him one day, “Bill, how you can stand being with cancer patients day in and day out with the pain they go through?” And, you know what he said to me? He said, “Do you know who my best patients are? Little old African American ladies that know that when they die, they are going to see Jesus.” Our disease is what it is and we can’t change it. Now I’m not on oxygen yet but I know that when I have to, it’s going to get scarier for me and I’m going to follow these things; and if you don’t remember anything else I have said today remember these things — the Bible says that when we can’t pray, the Holy Spirit will groan for us. So when we get down, and the words won’t come, go to the Holy Spirit and he will intercede. At the end months of my husbands’ life, I didn’t know how to pray. I was going to the Holy Spirit a lot just saying to him, “I’m groaning,” John 16:33 says “I have told you these things, so that you may have peace. In this world you will have trouble. But take heart, I have overcome the world.” And last but not least, I know where I’m going.” So when things get bad I’m going to keep repeating “I know where I’m going and I suggest you do it too.” I’ll say it over and over, “I know where I’m going!”
I did it the other day and it brought me great peace and comfort.
At this point, I would like to take this opportunity on behalf of the patients to thank all of the clinicians, interns and researchers who are taking care of us and fight for us and for the nurses who facilitate the support group at UofL who support us and make those support group meetings, fun, and informative. We want to thank our visitors also for what you are doing to fight this devastating disease. We patients are issuing a challenge to those who are conducting research …. Find us a cure please!