Bob and I, dancing in a Paris park. 2005
Lea Wait, here. Although Bob Thomas and I’ve known each other, as friends and/or lovers, off and on for fifty years, we didn’t live together or get married until 2003. I’d taken care of my mother for the last 25 years of her life, and Bob had cared for both his mother and his previous wife, both of whom died of cancer. We knew one of us would, some day, be caring for the other, and part of our decision to marry was our vow to each other that we would do that. In the meantime, we would support each other in what we wanted to do, individually and together.
Bob, at home, 2013
I was a writer. He was an artist. Two creative people who loved each other. We could make this work.
And we did. We traveled, to see family, and so I could sign books. One memorable trip to Beirut, where Bob had grown up, with a stopover to see friends in Paris. New Year’s Eves in Quebec City. New York City, where we’d met. Family weddings in Arizona, California, New York State, and New Jersey.
But two years ago we knew that our years of careless celebrations of life were coming to an end, and I would be the caregiver this time. (Although Bob kept insisting I might die in an automobile accident any day and he’d be the one left alone.)
At Bob’s suggestion, about two years ago I posted on this blog that within the past two months he’d been diagnosed with congestive heart failure, COPD, and then he’d had a stroke. Our lives changed.
That first year, after his diagnoses and stroke, our major concerns were Bob’s regaining his strength and ability to eat, drink, hold a paint brush, and deal with the pain in his legs from his peripheral artery disease. (Oh, yes. He had that, too. And a minor seizure disorder. And occasional internal bleeding, resulting in serious anemia.) Despite everything, he was stubborn and worked hard, and, overall, dealt well with his challenges. 
He was able to paint again.
Last year I posted again, writing about what it was like to live with someone whose health issues influenced every day of our lives. The major change for me at that time was that I was now doing all the “household chores” that Bob had done: shopping, errands, cooking, cleaning up, and so forth. My writing time had been cut back.
And yesterday, after the past few, rough, months, Bob suggested it was time for me to write yet another blog, letting the many people who’ve asked, know how he’s doing.
2017 was an increasingly difficult year. In May Bob had (on top of everything else!) an appendectomy which, because of his other issues, kept him in the hospital for ten days. He suffered brief oxygen deprivation, and learned how critical it was to be on oxygen. He came home with oxygen tanks and associated apparatus. But he didn’t use the oxygen all the time, and last summer we occasionally went out to dinner or for short visits to galleries where his work was hung. He didn’t paint much.
January, 2018
He tired easily, and was frustrated by having to use a nebulizer and emergency inhaler as well as, some days, the oxygen. But he enjoyed golfing (9 holes, and he rode on the cart) with neighbors, and greeting friends on our porch at cocktail hour. Standing or walking for any time or distance were difficult, but we cut back our schedules, and worked around that.
In September Bob’s brother, Rich, arranged a week in York, Maine, for all four Thomas brothers and their significant others. Bob used his nebulizer and inhalers and meds, and sat quietly most of the time, but it was a good week, with memories and laughs and good food. Bob quietly told me, “This may be the last time all four of us are together.” But we hoped that wasn’t true.
Bob was gradually becoming weaker. Then, in October, he went through a week during which both of us wondered (separately) whether he was dying. I moved a cot into our bedroom and slept there. Bob had major problems breathing, and his struggles were frightening. He used the oxygen all the time, and the nebulizer every couple of hours.
With granddaughters Samantha & Vanessa, several years ago
Finally his doctors (who work together impressively) convinced him to go to the hospital, and we spent several days there for tests and treatments. The base problem was not his COPD, which we had assumed … but his heart. His heart was failing more, and his lungs were struggling because of the lack of blood. Doctors upped the diuretics he takes, and he came home.
In November and December Bob had a few good days — but our definition of “good” has radically changed. Since early December Bob’s spent most of his time in bed, or sitting in a recliner in the bedroom. He’s become addicted to CNN and sports, and his television is on close to 24 hours a day. He uses oxygen all the time, and takes over two dozen medications. The stair lift and ramps I’d installed in our house when I was taking care of my mother make it possible for him to get up and down stairs relatively easily, and make it easier for me to move our meals upstairs so we can eat together.
Bob, 2016, with part of an exhibition of his paintings
Bob and I both, individually and together, have hours and days when we’re (quietly) depressed or angry. We don’t talk much about the future. Bob sleeps off and on during any 24 hour period. I sleep at night, lightly, so I can wake up if he has trouble breathing and I can help with his nebulizer. The diuretics have helped, but they also cause severe, painful, cramping. Sometimes he gets confused. He now depends on me for almost everything. In December our understanding next door neighbor drove to our house to pick up Bob and I to attend a party at his house — and returned us home in an hour. Bob hasn’t left the house since then except to visit doctors
Me? I spend a lot of time wishing I could help more: make his breathing easier. Take away the pains, when they come. It’s horrible to watch someone you love struggling, and not be able to help.
I’m tired most of the time. I try to cook food Bob craves. (Only in the past week has his appetite diminished.) I set up his oxygen and nebulizer and medications. My study is next to his room, so even when I’m working, I can hear if he calls me or is struggling to breathe. I’m interrupted often. I find it hard to focus on writing. I asked for (and got) an extension on my manuscript due last fall, and an extension on the book that was due February 1. I haven’t finished that one yet, and I have two other manuscripts due this year. Some days that panics me.
I know our situation won’t get better. While I’ve been writing this short blog Bob has needed me five times. He’s having a bad day. I feel guilty that I’m not with him all of the time. I want to seize and value every moment with him. When he wakes up, even after a short nap, he calls for me, to make sure I’m still here. I feel guilty that I can’t drop everything to be with him. But I have commitments, and I have to meet them.
We’re both doing our best. But … no. It isn’t easy. It’s painful, and frustrating, and scary.
We don’t have a timeline. We don’t know exactly what will happen next, or when. All we know is that we’ll face whatever comes in the best way we can.
We cherish this time. We say “I love you” a lot. And we’re very lucky to have had the past fifteen years together. Some of the best years of our lives.
And those years aren’t over yet.
Note: Bob read and approved this blog.
This blog broke my heart, Lea. Big hugs to both of you. You’ll both be in my prayers.
Thank you, Dee! All thoughts and prayers appreciated.
I am so sorry to hear that you both are struggling with this. I hope you can get some household or caregiver help so that you can meet your professional commitments and take the time you need to recover your own energies. It’s hard space to be in for you both. Much love, Lea.
Thank you, Tina.
I have been praying for you for a long time and will continue to do so. I wish there was something to offer to keep you going but you already have the only thing that really works, love. But remember to forgive yourself, you are doing anything wrong but I have watched this journey and know that it includes much undeserved guilt so once again love comes into play. Love yourself enough to let go of what you can even if it isn’t much. Finally, thank you for reminding us what real love looks like.
I agree with Tina, see support. Texas provides, after a lot of paperwork, house care and personal care. Surely your state offers something similar. Having someone come in to clean, do laundry and cook one meal a day can be a blessing. Have family or a friend do the research because you do not need one more job.
Thanks for the advice! I do have one person come in every two weeks to vacuum and dust — and that helps! Lea
Lea, Lea, Lea – so hard (though I loved the picture of you both dancing in Paris!) It’s difficult for anyone who has not been a caregiver in such a situation to understand. I beiieve one of the most difficult aspects is the unrelenting nature of your role – so little respite. I hope you have some support on the horizon to give you a few precious hours to yourself. You know you have to pace yourself for his sake and your sake – if you burn out or have serious health issues, life could get even worse and more complicated pretty fast. Also, you have so little time, and I don’t know about your location for accessibility, but caregiver support groups can be a tremendous assist. Hugs. Take all the help you can get.
You’re right, Marian. I don’t even like to leave Bob to go downstairs now — yesterday I went down to get him a drink from the kitchen and found him with major problems when I got back upstairs. I was gone, maybe, five minutes. So getting out of the house is a challenge ….but I’ll try.
Thank you, dear Lea, for allowing us to have another glimpse into how painfully offered your writing is has been becoming. Whatever you bring as that “writing offering” will perhaps be some of your deepest and best. Holding you both prayerfully.
Thank you, Calla, for that encouragement! I hope to finish a pretty decent first draft of the book I’m working on now (Needlepoint #8 – THREAD ON ARRIVAL) and am aiming at getting it handed in by March 1. I’m at that stage when I’m not sure what’s good — but I am trying!
Thoughts with you both, Lea. Please take care of yourself, too.
Thank you!
Lea, Thank you for sharing this journey you are on. It IS a hard and weary one. I went through something very similar with my late husband. There were days when I left the hospital and only wanted to lay down in the parking lot and go to sleep. But…I drove home and coped. He had multiple ailments…COPD, Heart Attacks and was in a lot of pain that we finally discovered was cancer. But, as with Bob, it was his heart that finally wore out. I too had cared for my mother at the end of her life and thought Wayne and I would now have years to spend together doing things we loved and re-discovering each other. It was not to be, and some days I wonder if I did enough, was enough, should have asked for more help but I wanted to be there by his side. I was lucky enough to have a wonderful boss and a situation where I could work with a laptop from the hospital and from home when he was there. I can not imagine having to write a book while all this is going on. My brain was absolutely fried. Wayne has been gone from this life for 18 months now and my journey is still on-going. Life is different now. It is not better nor is it worse. It just IS. And we go on. YOU are enough and are doing enough. You have to believe that.
I’m doing my best, which I hope is good enough. I, too, cared for my mother, for years, and then she spent her last 10 weeks in hospice, at a nursing home. She died the night before I was going to bring her home. We’re hoping Bob can stay here until the end. It isn’t easy for either of us … but it’s a last gift to both of us. Thank you for sharing that life goes on — there are moments I don’t want to think about that..
Your best is always better than “good enough”. Do not doubt that. Having faced similar with my baby sister 2 years ago. I understand how hard & important this role is for you.
Thank you both for sharing the rest of the story – your amazing journey. Thinking of you both and wishing you strength, hope and love. Please take care of yourself as well!
I’m trying, Pattie. Thank you.
The beauty of your love brought tears, Lea. I didn’t know how seriously bad Bob’s health was, and thank you for sharing your and his journey. Sending hugs from Massachusetts. I hold Bob and you in the Light.
Thank you, Edith. We appreciate that.
Lea and Bob, your devotion to each other and to your other loved ones, is inspirational. I am not that far from you. If you need me to pick up anything in town, etc., call me. I’d be happy to help.
Thank you, Jewel!
Living a 48 hr. Day, love will continue to fuel your courage. I pray that help will come to you to give you a bit of relief and that Bob will have less pain. All my best to you both, Patrizia
Thank you, Pat!
I am so sorry you are going through this struggle. Anything I can say is too trite but I am thinking of you.
Thank you!
Lea, reading through the comments it’s clear that you and Bob have touched many hearts. I hope you’re able to take a little bit of time for yourself occasionally so you can recharge. I will continue to hold you and Bob up in prayer.
Thank you — all thoughts and prayers appreciated.
Dear Lea, I read this blog with tears in my eyes never realizing how both of you are suffering. We will keep you in our thoughts and prayers. In a few weeks we will be home and be available to lend a hand anyway we can whether shopping etc. Sincerely, Merry & Will
Thank you both! Will look forward to seeing lights in your windows again!
My heart is sadden by what you and mlyour husband are going thru. I pray God will continue to give you both strength in body and spirit. Thank you for sharing this part of your life.May God bless you both .You both will be in my prayers today and every day.
Thank you!
My heart is sadden by what you and your husband are going thru. I pray God will continue to give you both strength in body and spirit. Thank you for sharing this part of your life.May God bless you both .You both will be in my prayers today and every day.
Thank you, Shirley.
Lea, I’m in tears. God bless you and Bob. I’ve been a caregiver to several family members (not for the length of time you have) and it is a frightening, exhausting, emotional, heartbreaking, rewarding, bonding experience (most won’t understand the rewarding comment). As blessed as your life has been together, Bob is blessed to have you at his side. My heart hurts for both of you. I ache to be able to do something, anything to help. You’re both in my prayers.
Thank you for understanding! Yes — there are rewards. Bob, especially, feels that caring for his previous wife was one of the most moving times of his life. My only sorrow (aside from the obvious) is that I can’t devote 100% of my time to Bob. I still need that 10% for meeting contract deadlines and etc. But he understands — which is very special.
Hugs and love going your way as long as needed.
Thank you, Gram.
Thank you for sharing your account. It’s heartening that your relationship has remained strong and supportive through it all, in spite of the inevitable frustrations and anger that come with being a caregiver or the one who needs care. Stay strong.
Thank you, Sheila. There are moments … but I’m trying.
So sorry to learn of your struggle. May peace and sustenance accompany on this journey. LOVE endures.
It does, Sally. Thank you for that important reminder.
Powerful. This is something that’s in the back of most people’s mind as we age, particularly when we know someone(s) going through it. Thank you and Bob for sharing it.
That’s why we (especially Bob) wanted me to write this. In out lifetimes, most of us will have the opportunity to care for someone they love who is beginning another journey. There are many rewards … and many tears. Bob and I are lucky we both cared for others first .. so we were a little better prepared now that it’s my turn.
Thanks for sharing that window into the journey together out of this earth plane for couples who care for eachother! It is important for all of us to think about and talk about, because we are all headed down the same path, and to go gracefully,helping eachother and feeling our feelings is the choice I want for for myself, my family and my friends❤I know where you are, I am a retired RN, and I would offer time and what ever help I could give, garbage to dump, groceries picked up, dinner made etc. Just call! I will drop my number off tomorrow when I take my dogs to be groomed on Cross Point Rd. Lydia
Thank you, Lydia! Your understanding is appreciated …
You express what many of us have or will go through in our life times. I so admire the way you and Bob are communicating with each other and are willing to share your experiences to the benefit of others. It is a delicate balance to be caregiver and at the same time caring for yourself. You seem to be managing the balance well.
Thank you, Beth — I’m trying! Every experience is an opportunity to learn, and feel. And realize.
Thank you for sharing this. If we are lucky and have someone to love like you and Bob love each other, we will all come to this. I know I fear it, as Jon and I age, and your sharing here shows me how it can be done with grace and even more love. Wishing you and Bob all the love and as much time as you can grab. Thank you.
Thank you, Clea. Every day Bob and I are thankful we have each other. I must admit, sometimes I wonder what will happen when it’s my turn. Thank goodness for long term care insurance!
Lea, I cannot tell you how sad I am to read of your life at this time… I do understand. My mother was an invalid stroke patient for the last twenty years of her life. I didn’t take vacations, I took carecations to be with her while my brother took his family on vacation. Mom lived with them because my sister-in-law was blessed to be able to be home taking care of Mom, being a wife and mother to her own four children. Momeas bed and wheelchair bound so we sang to a lot of Bill Gaither videos. I did everything for her while I was with her as Vera did daily when I wasn’t there. Being a caretaker isn’t easy… but, you and Bob have faced your future realistically… an excellent thing to have done. I know what it’s like to sleep without sleeping so you can hear any change in breathing or other sound that indicate distress. You and Bob have my love and best wishes for your future together. Please share many comforting, strengthening TLC bear hugs with Bob… I’m so thankful you’ve had these wonderful years together.
Thank you, Kammy! In many ways, we are so very lucky. And we know it.
Lea, thank you for sharing your and Bob’s story. I remember the earlier post, and have wondered how you’re doing. I cared for my mother and younger brother near the end (they died within a year of each other), and now have a husband with heart disease. As you have shown, we do all we can to keep our loved ones with us, as healthy as possible. And each day, good or bad, is the reward. You will have no regrets, many memories, and the warmth of a love and life well lived. I admire the courage both of you have shown in your honesty and caring for each other.
Thank you, Susan — and my best wishes to you in your journey. You’re right. Each day is the reward.
Watching my father go through the congestive heart failure ( at 63, I’m in the very early stages) and my mother with COPD (I have asthma, but not to the COPD yet), I know how difficult this is for Bob and for you as the caregiver. Please take care of yourself and ask for help, even when you don’t think you need it. We always want to spend as much time as possible with our loved ones, but you must see to your needs, as well, or you won’t be any use to him at all. As a fan of your books, I can wait as long as it takes for the next book. You have other priorities right now. Thinking of both of you with love and affection.
Thank you so much for putting this all in perspective, Pam. And hopes that your heart failure will be years in the coming …..
Your commitment to and love for each other in this excruciating time is powerful. Your willingness to write about what life is like for you both right now is courageous and beautiful in its honesty. Thank you for sharing all of this detail with those of us who care about you. Much love to you both.
With thanks to you, and to all the Maine Crime Writers, who have supported (and are supporting) Bob and I. Being part of a community is so essential at times like this.
So sorry to hear this news. I will keep you both in my prayers. Please, don’t feel guilty. You are only human. Take care of yourself. Sending love from Illinois.
Thank you, Desiree. Message received. Lea
Thank you for being so transparent with your thoughts and feelings, Lea. Praying for you and Bob as you wade through these difficult waters.
Thank you, Linda.
Lea, thoughts and prayers are with you both for peace and strength in the days ahead. If we live long enough, and love enough, we’ll all get to this day ourselves. When we took our marriage vows, for better or worse, we knew somewhere in our hearts that the worse days would come. We’ll celebrate our 50th wedding anniversary on Friday, 2/23, Lord willing, and are going through a similar situation, though not as far along yet as you and Bob are. We married at 19 and have had a wonderful life together, including many trips to Maine. I fear our trip there six years ago may well have been our last one together. Your love story has been amazing and I pray you have many more loving days together. Hold on to these precious moments!
Thank you — and all peace and well wishes to you both. We all know there is an end. Sometimes dealing with it, on whichever side, is harder than other times.
Ah Lea, my heart aches so for the two of you. But I am so glad that after all those years of separate lives and wanting, you did have your great love. Wish there was something I and the many who read your words could do to help in this process. Know that you are in my thoughts. I hope you are getting some care taking help???
Lovely to hear from you, Linda! You’ve known our story from before the beginning, if there was such a time and place — and have had your own stories, too. At the moment, no, we’re on our own. But as a result of this blog, some people have volunteered to bring some food, and help out in other ways. All good. We’re not officially hospice yet, but when that happens, probably soon, other possibilities will be open. You cared for your parents, so you know. I’ll never forget seeing your dad at your home in Potomac — confused about the present, but looking and acting like a gentleman. How wonderful you were to him! All best to you and Silvio.
Hearthfelt testment to the enduring bond between two creative people. The hardest part of caregiving is the seeming inability to do more to ease the condition being experienced by your loved one. Having gone thru a similar situation I marvel at your resolve. For me living in the moment and knowing that “being there’ was the greatest gift I could give made each day a bit easier to appreciate and enjoy.
Thank you for that thought, Gerald. So many times if we love someone we want to “fix” and “make better” whatever is happening to them. In some cases … that just can’t happen. And it’s hard. Thank you for understanding!.
Oh dear, Lea. I didn’t realize how badly Bob is suffering. I took care of my Mom her last years and it creeps up on you when you can’t step away for 5 minutes or sleep well. Please talk to the doctor about hospice…not a nursing home. The home health agencies in Maine do hospice based in the home. You will get some relief for your time a couple hours in the morning when they come in. The ladies who do hospice care are their best workers. And they can help with housework and meals…all paid by Medicare. I think you’re at a point where you may be endangering your own health now that it’s a 24 hour a day job with no breaks. For his sake as well as yours, take some care of yourself. You’re in my prayers and I sympathize with Bob trying so hard to get his breath. I envy people who take breathing for granted. Bless him and you and make that call to the doctor.
Thank you, Mary Anne. We’re not officially hospice-qualified yet … although sometimes I wonder why not. But Bob’s primary care physician is the doctor in charge of hospice in this area, so we will be talking with him — actually, we talk with him about once a week. Inquiries will be made! And, yes, we want Bob to remain at home unless he needs a specific treatment that can only be given in the hospital. Thanks for keeping in touch … Lea
Lea, I will keep you and Bob in my prayers.
Thank you, Dru — and thank you to everyone whose written to me privately, or here, or on Facebook. Bob and I are lucky to have so many friends — from all parts of our lives. Love you all!
Although I have no words I’m sending many loving thoughts to you both in this difficult time.
They’re appreciated. Thank you.
This was very hard to read as I kept my Bob home all but 12 hours.I was much younger and it was hard but I wouldn’t have missed a minute of it. My youngest son was 12 and it was so hard on him but he told me later that he was glad his dad was home . Love binds a family that’s for sure. Bob is such a wise man and I always looked forward to his remarks on your posts. Wish I words to make it all better but you seem to have worked. it out. My fear now that I’m 83 and my sweetDIL would be stuck with me but we have no control over that. One day at a time , one foot in front of the other. All my love
Dear Ruth, thank you so much. Yes, we want to keep Bob at home, unless there is a strong reason to do otherwise. Knowing others have done this helps. And — I’ll admit I, too, think about who would care for me when the time comes. A hard question. Thank you so much for sharing!~ And, always, for all your support.
My heart breaks for you and Bob. I’m so sorry to hear about all of the challenges the two of you face daily. I applaud your commitment to caring for your beloved husband. I pray that you will be able to continue to cope in the days ahead, and that you will take care of yourself too, since the stress of caring for a sick loved one is immense.
Thank you for sharing your lives with us. I will say a prayer for you.
Thank you. All prayers appreciated!
I’m keeping you both in my thoughts and prayers.
This is a wonderful tribute to the love and commitment you have for each other and I enjoyed reading this blog post. It’s okay to be angry at the cards you’ve been dealt, just remember to take care of yourself so you can continue to take care of Bob.
I’m trying. Thank you! Lea
I am not a gifted writer, like you are. And I really do not know what to say other than you are a very brave woman to share this beautiful blog with all of us. I pray that Bob can stay with you, in your home until the end. I also pray that you keep up your strength and spirits and can find some joy in the time you have together.
Thank you, Annette. That’s what I hope for, too. And your words are just fine. Thank you for writing. Lea
I’m so sorry to read this. My problems are not as severe as your husband’s but my husband pretty much has to do almost everything for me/us. I know how difficult it is and will be praying for your continued strength and good health especially. I was the caretaker for both my parents for a long time but I was still able to walk and had decent health thank goodness. Please take care of yourself as much as possible. My heart goes out to you. 💜
Cynthia B
Peace, love and strength to you and your husband. I’ll be thinking of you both, too.
Bless you both. I’m in a similar situation. Sometimes it’s very bewildering. Many good moments and wishes for a support for you and yours. 💖❤️
And to you …we have to stay strong for those we love.
None of us knows how or when, but each of us will one day become the caregiver or the one needing care. Your commitment to one another and the loving and dignified way you are facing this most difficult time is inspirational. My thoughts and prayers are with you both, Lea.
Thank you.
Thank you. And — you’re absolutely right. No days are promised. But we can control what we do with those we are lucky enough to be given.
My prayers and thoughts are with you both! What an amazing love you have! Thank you for sharing with us
Thank you, Kay. Bob and I’ve been overwhelmed by the responses to the blog.
Lea, I read your blog as we were away from home and wanted to wait until I could use two hands to send you my thoughts. I have lost my parents and also my son (at the age of 12) and Garth Brooks’ song THE DANCE touches my heart. In it he says that ‘I could have missed the pain, but I would have missed the dance.’ As Tom and I near our 52nd anniversary the fear of losing him, or having him have to care for me, keeps creeping in, but I remind myself to enjoy each special moment and opportunity to tell people I love them, and trust that God will give me the strength to face what lies ahead. He has done so all my life. He put us on this earth to care for each other and you are doing such a great job caring about Bob. Praying for you both.
Sending you and Bob much love and prayers. God bless you both in this journey together.