"Letters for Lizzie" Care giving for a chronically ill
spouse and its ongoing, long-term effect on the caregiver.

James ODonnell
2/9/2004

[HOST_Carolann] I think we will get started now. Welcome everyone! Our guest for today is James O'Donnell.
[HOST_Carolann] For the past 10 years Jim has been care giver to his lovely wife Lizzie.
[HOST_Carolann] Together they have struggled with her cancer, heart disease, kidney failure and other chronic problems.
[HOST_Carolann] Jim will talk about their experiences and how their faith has been through the fire. Later there will be time for questions and comments.
[HOST_Carolann] There is a handout available if you would like to get your copy - go to www.restministries.org/CHAT/handout_odonnell.PDF
[HOST_Carolann] Welcome Jim and thank you for being here. I will turn our time over to you.
GUEST_JIM> Thank you, Carolann, and thank you, everyone, for joining in. I will try to give you a little background , not knowing what's on the handout.
GUEST_JIM> I wrote Letters for Lizzie to tell a story about a horrific set of events that struck our family. But I also wrote the book to give all people going through tough times reasons for hope.
GUEST_JIM> The book is about the woman I love, and it's about me. It's also about our real, though imperfect, faith in God. That faith was big enough to help us risk all that was familiar to us - money, friends, nearness to family -- and move from Boston to a little town in Indiana.
GUEST_JIM> But once in Indiana, Lizzie's life came under relentless attack, first from a terminal cancer diagnosis, then from end-stage heart failure. And my own faith was called into question as well.
GUEST_JIM> What had we missed in coming to try to serve others? Why was God so angry with us? As Lizzie's crises deepen, my simple trust that God would never let me down began to give way to dread and fear that perhaps -- just perhaps -- I'd misunderstood who God is.
GUEST_JIM> Indiana brought us wonderful gifts of new friends and a caring community. But our faith was tested mightily. Ultimately, we found God sustained us: God was present in both the shadows and darkness.
GUEST_JIM> But, even knowing that, God still seemed absent for long periods of time. Grace was given, yes. But not always at the time, or in the way, Lizzie or I might have thought.
GUEST_JIM> In the finished book, each of the 13 original letters is preceded by a brief reflection, looking back from 2003, on thoughts and emotions not included in the original letter.
GUEST_JIM> The resulting book is an intimate, honest, and vulnerable true story of the dangers life can pose. It is a book of struggle and, ultimately, of hope that, I trust will be a gift to any who suffer.
GUEST_JIM> Does that little summary give people an idea of what we've faced?
Sheri> yes
Tammi> Yes. Thanks.
Mary_LouC> Yes, thank you!
[HOST_Carolann] I'm sure alot happened in that short summary!
Tammi> My husband and I are learning that we need to be more honest with others about our circumstances and how hard it has been with my illness (CFIDS).
Ron> yes indeed
Tammi> But it's so hard to be vulnerable. We want everyone to think we have it all together and are very strong and tough!
GUEST_JIM> Yes, a lot has happened. What we've been through has changed us, matured our faith, too. But, while not ignoring the awful stuff, both Lizzie and I want to be encouragers of others in the struggles they face.
GUEST_JIM> It is hard to be vulnerable, but is there any other way to really live? It seems to me, and I fully believe it is a biblical concept, that even our troubles are capable of being helpful to others.
Alice> I have learned that i can encourage people more because of what i am going through with my illness.
Alice> Before i became ill, it was easy to overlook others who had problems
[HOST_Carolann] You're absolutely right Jim, it is scriptural basis of fellowship
GUEST_JIM> One of the things I struggle most with is the person who's religion tells them he or she can't complain, can't admit how hard things are. Such people may find personal solace in holding themselves together, but I don't know that they help a lot of more human types who see life as both joy and suffering.
Alice> I find a lot of people who don't want to talk about their illness - i don't know if it is pride - or denial.
Louise> Amen and Amen, JIM
Tammi> I think it goes back to what Jim said about being vulnerable with people when we have the chance, whether it is friends or people in the church.
GUEST_JIM> For those of us who do draw strength and wisdom from our faith, I am so grateful that our scriptures offer so many wonderful examples of faithful, suffering people who served God well, but did not hide their pain
Tammi> Good point!
[HOST_Carolann] amen
Sheri> amen to that Jim
brose> for one some people make you feel it is not biblical to talk about sickness
GUEST_JIM> Even Jesus in the Garden of Gethsemene, we are told, pleads with his father to take away this cup and sweats tears of blood. Many times, I have come back to that image, not so that I might whine and complain as a caregiver to a chronically ill precious woman, but because it validated my full humanity.
Alice> Jesus, Himself tells us that we will suffer for Him - and it is so worth it all.
[HOST_Carolann] what a wonderful reminder Jim!
Sheri> i agree carolann
GUEST_JIM> I recently talked to a woman, while on a little book tour, in NY, who has stomach cancer. her future is terrifyingly uncertain. But her family, she told me, "balls her out" when she cries, which from time to time, she does. I care about such people. I hope all of you have people who let you be a bit messy from time to time.
Tammi> That poor woman! I feel soooo sorry for her.
Sheri> absolutely, Jim, I encourage it
brose> that is horrible
Louise> Jim, how do you suggest "being messy" without fearing you will just depress others?
[HOST_Carolann] yes, we need people like that in our lives
Alice> Just yesterday i had to encourage a friend who had cried over her situation that God says "he keeps our tears in a bottle" - so crying is just fine!
Sheri> we all need to be a bit messy
[HOST_Carolann] good question Louise
brose> my daughter says I got to let the tears out mommy i need to let them hit the floor so that they can turn to gold
GUEST_JIM> Being messy may surprise others, of course, but it may also help some grow and stretch in their own lives. This takes discernment, of course.
GUEST_JIM> I do not like the tv talk show format where the sufferer and his or her 8 million closest friends "share".
Alice> Jim - tell us more about how your life with your wife goes day by day.
Louise> Jim, yes please tell us more.
GUEST_JIM> My wife with Lizzie goes pretty well. Lizzie astonishes me much. After all she has been though she is a full time hospice volunteer. Isn't that amazing. Some days she can't do much, but most days she's out and about taking care of people she feels are much worse that she.
[HOST_Carolann] wow that is so great
Alice> That's what keeps her going = when you put others before yourself
Sheri> Was there a time when she was much less able-bodied due to the illnesses?
Mary_LouC> God bless her!
willnetta> what illness does she have?
Louise> wow, that is incredible, Jim.
GUEST_JIM> We have three sons, 29, 26, and 16. Lizzie was a hospice patient herself before getting her heart transplant, so the lady KNOWS.
willnetta> that's what my hubby needs now...heart/lung transplant
Alice> I would like to think i could be like her if i was enduring what she is -- but i don't know. I would only be able to with God's help....which is always present for us
Tammi> She knows what it's like to suffer, so she can encourage others.
willnetta> yes, if not for HIM neither of US would be here today
Louise> Jim, you would think it would frighten her - that Lizzie would want far away from those memories.
Tammi> Good point.
[HOST_Carolann] did you struggle with a feeling of helplessness Jim while Lizzie has suffered different serious health problems?
willnetta> what's it like for you , JIM?
GUEST_JIM> Lizzie stills has one of her young ones at home, and she pours her life into taking care of him, me and her hospice patients. Both of us believe when things go bad, we can ask why me only so long. Then we have to get busy -as best we can - with doing something about the problems.
Tammi> Amen.
[HOST_Carolann] the why me question usually doesn't get answered!
Sheri> right carolann!
willnetta> no, never does here, either unless it is us on our knees praying and talking with GOD
Alice> Hardly ever gets answered = but lots of people in the Bible asked "why" and didn't get answers, either.
[HOST_Carolann] we need to trust God knows what He is doing
willnetta> yes HE sure does
GUEST_JIM> I suffered tremendous feelings of anger, hopelessness and dread as Lizzie battled the supposedly terminal breast cancer whose treatment led to the failed heart and the need for a transplant. I was angry with God too.
[HOST_Carolann] how did you get past that anger?
Alice> And God understand our anger -- look at Jonah in the Bible
GUEST_JIM> I got past the anger only with lots of time, grace and friends. The friends helped me see and receive God's love when, for a while, I couldn't see it. I hope all of you are very, very honest with God.
brose> often i see his grace
[HOST_Carolann] that's so important to realise isn't it Jim, that we can be totally honest and open with God
[HOST_Carolann] other people's faith can help us through - that is what true fellowship is about
Mary_LouC> And it's really silly to try to hide anything anyway. God sees it all, but he wants us to talk about it with him.
Alice> We need to be honest with God - He knows what we are thinking anyway
Alice> So glad that you got to that point, Jim. and don't feel bad when you fall back sometimes.
GUEST_JIM> I hope all of you, too, have at least one good friend with whom you are able to rage, if you feel you need to, from time to time. I think lots of people feel they can go to God only in their Sunday best, so to speak. That's not honest. And it's not what the real God wants from us. He wants every part of us, the brokenness especially.
[HOST_Carolann] Jim, did you find that writing of your troubles to your friends was a real help to you in itself?
[HOST_Carolann] I mean to express yourself in that way?
GUEST_JIM> Yes, writing for me was a great help. My book, letters for Lizzie started as prayer letters to friends we had recently moved away from. I coveted their prayers on our behalf.
Alice> That's beautiful
brose> I've dealt with this for years but went into remission for many years to almost a full recovery then about two years it came back wit ha vengence worst then ever before now with fm, migraines, and tmj to boot. In Sept. in got extreme so since I've been dealing with much loss and anger not dealing well at all
[HOST_Carolann] if we don't have a friend to share our anger with face to face, then maybe the next best thing is someone we can write to?
GUEST_JIM> Still, we live in a culture that does not know what to do with suffering if it doesn't occur on, say, a football field. So many are so immature in their ability to handle what life can and does dish out when it send each of us, sometime, a bill.
brose> i don't talk to anyone
Louise> Jim, how does Lizzie volunteer with hospice, you would think she would want to run from any fears and bad memories. It is amazing to me.
GUEST_JIM> Louise, Lizzie and I both process pain best by trying to do something for others. It helps redeem the mess we are in. It gives purpose and meaning to the stuff we have experienced.
[HOST_Carolann] what a lovely way of viewing your pain
Alice> It always helps to focus on others......gets our minds off of ourselves.
GUEST_JIM> I don't know that it's lovely, Carolann. In a way it's selfish, because that's what makes us cope better. And lots of what we do is coping. We're not going to get back to being "all better". But we can influence how awful things are.
Mary_LouC> And we have a God of all comfort who comforts us so that we can turn around and comfort others.
Tammy> hi, I'm dealing now with taking care of my mom who is coming home with my dad. She had a stroke and is paralyzed on one side. I have a tendency to take on too much and my own family suffers
Louise> Jim, I was in the hospital for a week, now I am almost terrified of then and doctors - any suggestions how to get over it??
[HOST_Carolann] I think it's good to see purpose and not waste your pain
Alice> Amen Mary Lou - the HopeKeepers scripture!
Sheri> Jim, I think many of us are in similar situation, won't get back to being 100% well again
Mary_LouC> Sounds like you can relate to Jim as a caregiver for his wife, Lizzie, Tammy.
brose> same here Carolann
GUEST_JIM> Wow! I, too, have such horrible associations with hospitals, and especially smells that come from being in them, that I dread going in them. But for my Lizzie, I would do anything and I hope I always will. There's just so much that I wouldn't choose to do except for the love that binds me to Lizzie. What more can I say?
Tammy> yes, but I also need to take care of my stress level and my christian counselor has helped me to balance things
[HOST_Carolann] Did you find it hard to have balance in your life Jim. like Tammy is saying?
Louise> Lizzie must be made of different stuff than I. She is so strong.
GUEST_JIM> Yes, there is a great need to find balance, and we need intelligence and grace to do that and keep that. Caring for a loved one who's sick is something you never get "on top" of.
Alice> Proves you love your wife as Christ loves the church, Jim. Good for you! I have a husband who is like that -- and sometimes i don't feel like he is real!
Tammy> I am an RN but have been disabled since 1999. Just remember God gave us drs and nurses and hospitals to help us get better, sometimes if we thank Him for these things it gives a whole new perspective on them
Sheri> JIm, what did or do you do to make sure you deal with your own emotions and "stuff" and not get carried away with helping Lizzie?
[HOST_Carolann] good point Tammy (in answer to Louise's question)
Sheri> I have someone in my life who struggles with this, tends to automatically put me fit and ignore his own issues
GUEST_JIM> It's something we keep coping with. My greatest struggle with my Lizzie has been in the area of communication. She's very quiet, an introvert, so to tell me what's bothering her. I want to know everything. Even when I know I can't fix something. I just want to know. I want to connect with her, be intimate.
Mary_LouC> How long have you been married, Jim?
GUEST_JIM> Lizzie and I have been married for 34 years, and we dated for about 4 years before getting married.
Tammi> It sounds like you have a neat relationship!
brose> congrats Jim!
Louise> Jim, bless you. Usually it is the other way around - wife begs husband to talk!
Tammy> My husband takes care of me and the house when I'm sick . As I get to feeling better though I have a tendency to try to make up for lost time and don't do alot for my enjoyment.
[HOST_Carolann] hehehe, you are right Louise!
Alice> Jim - do you ever go and do things without Lizzie - just for a break and to get refreshed?
Tammi> Yes, Tammy, I have the same problem sometimes.
GUEST_JIM> I meant before that Lizzie tends NOT to tell me her problems, even though I want to know. And sometimes this quietness has driven me mad. If I was going to lose her to me in this world, I hoped to have intimate conversation with her before she left.
Alice> And, does she understand you need that. My HopeKeepers class has care givers in it and i encourage them to talk to their spouses and see if they would mind them doing that. It can bring you back ready to dive in again.
Tammi> We have to make minute by minute choices of what we are going to use our energy on. It's important to do fun things, though, that we enjoy.
brose> right Tammi
GUEST_JIM> Lizzie does understand that I need her intimate conversations, but they are hard for her. She doesn't want to burden me, or add to my burdens. But that doesn't help.
Louise> Jim, sometimes when we have so much to cope with as patients, we just withdraw to an inside place to lick our wounds, so to speak.
Tammy> I see your point Jim sometimes the imagination is worse than reality
brose> sometimes talking for me is to exhausting
Alice> It's hard to find a balance
GUEST_JIM> Still, I'm among the very lucky because both of us are willing to keep trying to work the problem, rather than retreat into our separateness. And if we did that, we'd have a very hard time.
brose> yes Tammy
Tammi> I do that also. Sometimes you need to just rest, Brose.
brose> yep
Sheri> My other half does that too Jim. He is also an introvert, and also has difficultly expressing his own feelings
[HOST_Carolann] Our time is just about up. I think there was just one question that may not have gotten answered, Jim, and that was do you make time for yourself to get refreshed
GUEST_JIM> My experience is that in most marriages, the man is the non-talker, while the woman can't connect enough. It's the reverse in our home. But I love Lizzie intensely and we keep trying to help one another.
brose> I'm to give my best to Him and others. I can't give my best to others if my energy is low therefore He's not getting my best either.
Louise> Jim, sometimes Lizzie may feel she just wants everything to be like before - when you both talked about the little things of life, not life and death.
brose> rest is my season right now.
GUEST_JIM> Carolann, I do make time for myself. I write books and speak widely and sometimes even go into chat rooms. God bless you all.
Tammi> Thanks, Jim, it was a blessing!
[HOST_Carolann] that's great, thanks, and thanks SO much for being our guest today and all you shared
Mary_LouC> Thank you for sharing your story, Jim. It's an inspiring one! May God continue to bless you and Lizzie in your marriage and your ministry. Good-bye, all!
Sheri> thanks for sharing Jim
Ron> thanks Jim for your openness
Alice> Thanks, Jim -- and as always -- thanks to you Carol ann. bye all!
Louise> Thank you Jim!!!
[HOST_Carolann] anyone is welcome to stay in the chat room and chat together
[HOST_Carolann] God bless you Jim and Lizzie
[HOST_Carolann] you are an inspiration Jim, to keep pressing on in our lives, in our relationships
Sheri> thanks Carolann for hosting. bye everyone!
[HOST_Carolann] your welcome