Lea Wait here. About a month ago, February 21, I posted a blog about caring for my husband, Bob Thomas, who has not been well for the past two years, since he was diagnosed with heart failure, COPD, and then had a stroke.
I really appreciated the hundreds of comments here, and on my Facebook page, and those sent to my email address. People shared their experiences with caregiving, promised thoughts and prayers, two people made food for us, and one reader from Arizona even knit a special prayer shawl for Bob.
Bob, with his prayer shawl
We were both overwhelmed. But in the past week I’ve gotten comments and notes asking how Bob and I were doing. I hadn’t been posting on Facebook, and hadn’t followed up with some projects. Bob and I aren’t comfortable with posting daily updates on his condition, but he suggested, even though my post was only a month ago, that I needed to write another blog.
Because our road has taken a turn.
In February Bob became progressively worse. On March 4 I called an ambulance. Bob was in intensive care for nine days. I was with him all but two nights. While we were in the hospital we made plans for the immediate future. He came home last week under Hospice.
Hospice, as many of you know, is a program under which patients who have life expectancies of six months or less can be cared for and treated in their own homes. (Hospice can be extended if necessary, and if it is not possible for a patient to be cared for at home, or no caretaker, similar care may sometimes be arranged in a nursing home.) Care under hospice is palliative; its goal is to make the patient comfortable, not to cure the disease. Under Hospice I will continue to be Bob’s primary care giver, but he will receive regular visits from a nurse, and be supplied with appropriate equipment (e.g. hospital bed, wheelchair, oxygen) as needed.
So far, ironically, our biggest problem has been coping with the fact that while we were in the hospital I picked up germs that turned into pneumonia. Caring for Bob while not contaminating him has been a challenge. Luckily, Bob’s been doing better since he was in the hospital, and he hasn’t caught whatever germs I have.
Although that “six months” is hanging over our heads, we’re still making plans. Plans for Bob’s paintings to be displayed at the Stable Gallery in Damariscotta beginning in May. Plans for me to promote my new mystery series debuting in June. Plans to sit on our porch when the weather is warmer, look out over the river, and watch our spectacular sunsets. Plans to spend time with family or friends who visit.
Our old house has seen life coming and going many times since it was built in 1774. It has seen grief and joy; tears and laughter. We expect the next few months to bring more of all those emotions, as Bob travels a new road. I’ll be with him as far along the way as I can go.
And, we remind each other, sunsets are just as beautiful from his bed on the second floor as on the porch. We’re hoping to see many more of them, together.
Love sometimes means acceptance, and letting go. Every day we may move a little closer to that final letting go, but not to letting go of love.
Note: Yes, Bob read and approved this blog.
Your courage in sharing your journey is a gift beyond price. Thank you both. You and Bob remain in my prayers.
Thank you, Vida.
So beautifully written….I was very moved by the love I felt as I read this update. Peace and Blessings for the two of you.
Thank you, Carrie.
Lovely, note, and I know you are a darling, loving person..I wish you and bob, . More days on your porch.. Diane.. 3-22-18
God bless you and Bob, Lea. I’ll be praying for you both. I hope you don’t think this corny, but this song may bring you some courage and comfort. https://www.youtube.com/watch?v=c-XNM–rwJM
Hugs.
Thank you, Dee. I’ll admit — that song made me cry for the first time in a few days. Beautiful. Thanks for sharing
Lea, thank you and Bob for sharing with us. You will both be in my prayers.
Thank you, Crystal.
His beautiful paintings will last forever, if only in my mind. Wishing you both a lot more love together.
Thank you, Tina. And Bob thanks you for remembering his paintings
Thank you for sharing this loving and poignant description of what your time together is like now. I hope every day shows a beautiful sunset for the both of you.
Thank you, Ramona.
Lea, It’s very touching and generous of you and Bob to share your journey with us. I’m sure your courage comforts and inspires others in similar situations. Wishing you both peace and love.
And to you, Michele.
I also appreciate the sharing of your journey…it seems we are in good company as we age together..one sunset at a time and savoring the beauty. Praying your strength is returned and that you are both given moments to treasure together. 💗
Thank you, Calla … aging and death are a natural part of life, but our culture doesn’t celebrate them, perhaps as they should. Thank you for your comments.
The road at the end of life is rarely easy, but can come with a great many blessings. I wish those blessings for both of you.
Thank you, Gram.
Lea & Bob,
My heart goes out to you. On March 13th my husband lost his fight with congestive heart failure and COPD. It was a quick and peaceful ending with our three sons and daugher-in-law at the hospital with us for the final hours. He had achieved two goals, to celebrate our 50th wedding anniversary in December and to turn 86 which he did on the day he died.
Treasure every moment you have together, and please know that prayers are with you. God bless you both.
Thank you for sharing that, Charlene, and our wishes for peace for you. Bob thanks you for letting us know your husband’s end was quick and peaceful … that is what he, too, hopes for.
My thoughts and prayers are with you and Bob. Your post made me think of the invaluable service hospice provided during my late wife’s battle against cancer. They not only took care of her needs but those of the family as welol.
We’re just beginning the process, Vaughn, but that is our hope. To every beginning there is an ending …. and it helps to have friends along the way. I know you’ve been on this journey, and all thoughts to you, too.
I think, but as yet have no personal experience, hospice makes a transition from this life to whatever comes next smoother for everyone. Not less painful in the face of loss, but physically less difficult. I wish you both the best in this bittersweet time. I hope I am as courageous and composed as both of you when my time comes to be there.
Steph
We have our less courageous and composed moments … but, thank you. We are trying to accept, with love.
Lea, thank you for sharing this with us. You and Bob are in my heart and prayers.
Thank you, Dru.
Dearest Lea, My thoughts are with you and Bob at this precious time. Sending you love and light as you make this part of your journey together. As ever, Emma
Thank you so much, Emma. You’ve made such a difference in my life … your comment means a lot.
Lea and Bob, I hold you both in my heart. As primary caregiver to my grandmother, and mother, as well as being caregiver to my brother, I have been on your hospice journey. “. . . its goal is to make the patient comfortable, not to cure the disease”. . . are the hardest words I was ever told. However, they did help in my care giving. The love you have for each other is abundantly clear. As you travel this journey together, you will find that love is even stronger than it has ever been. May God hold you both. May He give you the strength you need as you travel this road, as He has already blessed you with your love for each other.
Thank you, Lisa. Bob cared for his mother and his former wife with the help of Hospice … my mother died before she could come home under its auspices.. But we both feel strongly that this is the way to go. One day at a time, as you know well.
Thank you for your inspiring story of love and courage. Hospice has been a wonderful resource, not just for my family members enrolled in it, but for all of us who loved them. Wishing you and Bob the strength that only love can provide in this difficult time.
Thank you!
Thank you, Maya!
Thank you for being so open and sharing. Hospice is an amazing thing. They were great with my dad and I have several friends who have been hospice volunteers here in Somerset County. I’ll send positive thoughts your way as often as possible.
Thank you, Friend!
How wonderful of you both to share your burden. I’m wrapping warm hugs and prayers around both of you.
Thank you!
Beautiful. Brought tears to my eyes. My thoughts and prayers for you both to travel this journey together and with the peace that only God can bring. Are you sharing pictures of that awesome sunset and you and Bob through your time? God Bless you.
I’ll be posting some sunsets along the way … all best wishes, Abby.
Lea and Bob: I’m so happy you shared this update. It must be so hard, but your courage shines through. Acceptance and letting go. Yes. My thoughts are with you both.
That you, Kate.
Thanks for keeping us posted, with your clear-eyed and honest look at the future God be with both of you and give you many more shared sunsets.
That’s what we’re hoping for, Judy!
Oh Lea! Sending you and Bob so much love! Thank you for sharing your views on the road we will all travel.
Thank you, Clea …
Lea, my thoughts and prayers are with you and Bob as you travel this new road together.
Thank you.
Lea,
Keeping both Bob and you in our prayers.
Thank you for sharing this very personal journey with us as you serve as a model for the rest of us.
I don’t feel like a model …most of us care for someone, sometime in their life. But I thank you for your words.
Lea, I share with you a quote that was shared with me when we were making the final journey with a precious 8 yr. old – “the road whether long or short still leads us Home.” This still comforts me and I hope it may comfort you. Enjoy the lovely Maine sunsets as you travel your road.
Caring for an eight-year-old must have been especially difficult, Sally. Thank you for sharing your words … and journey. .
Lea, I too was a caregiver for my husband has he fought the good fight against cancer. My sincere thanks that you have hospice in line. They are a godsend. Once I retire, I will volunteer with them. Please do treasure each moment with your husband. I am thankful that I got to be do the same with mine. But also, when they tell you that you need a break – take it. I will be praying for you as you continue this journey. And remember, it may not be the full six months or it may be longer! Much love and prayer, Lynn Leary
Thank you for sharing, Lynn! The future, and it’s time line, is still unknown. But hospice is a wonderful organization — Bob’s mother volunteered with them in Connecticut! And in the meantime, we continue to value each day.
Good morning to you both. My heart and prayers are with both of you.I know you are treasuring every second,every minute,hour and days that God is giving to you. It takes all the strength,compassion,and love to go thru what you are . My son was put on hospice but he was in hospital when he passed. He was only 45. He had been sick for much longer than any of family knew,seeing as he lived miles away. He came home to die. He was only home for just a few months and was in and out of hospital. When you hear other people’s situation you think you could not do that but God just gives you strength to do what you need to do . It’s hard to sit and watch someone you love so much just slip away and you feel so helpless. Sorry to bend your ear. Just know I do know what you are going thru and my heart breaks.God is so good,he is giving you and Bob this time together to share the little things ,like the sunset,things we take for granted. God bless you both.
So sorry to hear about your son, Shirley. But you are right … we do what if necessary when we are needed. Bob and I are so very lucky to have known each other for almost 50 years — and to have spent the past 15 of them together. Those memories will not die.
Lea, thank you and Bob for your honesty and compassion, for your willingness to share your journey with all of us. I remember the weekend we met on Martha’s Vineyard, and how lovely you two were as a couple. Bob has had a long and fulfilling life, and now he’s surrounded by love as he takes the final steps. Bless you both.
Thank you, Susan! That was a wonderful , if rainy, weekend on the Vineyard! Exchanging stories and thoughts and drinking champagne … a special time. Thank you for your words now.
Bravo Lea and Bob, you are both a joy and inspiration to all. Hoping beautiful sunsets continue as long as you are able to enjoy together. May you be surrounded by love and comfort. I know your hospice service will keep you both safe and comfortable.
Thank you, Maureen. So far we’ve been very impressed by all Hospice can do to help. And, independent souls that we are, accepting help has its own challenges, but we are learning. We never stop learning, do we? Thank you for your thoughts.
Thank you Lea and Bob for sharing your news. I have been so impressed by your courage and love for each other. It’s hard to know that, although all of us have a limited time together, your are experiencing the knowledge of just how little time you have left. You are both amazingly brave and I think you have found a way to cope with love and dignity. Hospice is a wonderful service that will take care of some of the actual work of caring for Bob and leave you with important part, the loving and living each moment. You are both in my heart and I can hold you in the light.
Love to you both, Tina
Thank you, Tina! Bob cherishes the memories of his friends from ACS, and I’m so glad we had a chance to see you again a few years ago.
Oh, Lea. My heart goes out to both of you.
Thank you, Barb.
I walked the hospice road with my father until his earthly life ended on 3/25/11. I didn’t regret the three months I took off work, the late nights, or the coming to grips with the fact that Dad was still the same even as his body gradually functioned less well. To have the blessing of the known good-bye allowed me to enjoy life at a different level. I pray that the two of you can live well and rejoice in one another.
Thank you for sharing, Ellen. We’re hoping your experience will also be ours.
My husband and I cared for his dad under the watchful and loving eyes of hospice nurses. I wouldn’t trade a nanosecond of that time we had with him. My heart goes out to both of you as you travel this road that is unique to each person traveling it. Life is so precious. 💜💙❤️💚💛
Thank you, Linda.
Dearest Lea and Bob, your all-enveloping love is apparent in every word you write. Very, very few people ever experience the love that you share. You are so blessed to have found, and claimed, each other. May each day you share bring you something beautiful to keep in a journal with additions such as bird feathers, flower blossoms, blue spruce twigs, and sugar maple leaves from your yard… a box for river rocks and other keepsakes. Your love is one for the ages… And hold each other with all the TLC you can. Psalm 139:1-18…
Lovely thoughts, Kammy … and my best to you, also. Lea
My twin sister was diagnosed with COPD few years ago. She was on a trial for some months. It turned out that the drug she was given was not a placebo, but the real thing and it was working. Then they pulled the plug on it saying it was not viable! So. they got her on another trial, that trial also was cancelled after a while. 2017 I ordered COPD herbal remedy from Best Health Herbal Centre online and they shipped it to me. She only used the COPD herbal remedy for 5 weeks, all her symptoms disappeared, she stopped wearing oxygen and my family doctor confirmed her, COPD free now. Is almost 5 months now, no more COPD.
Wonderful news about your sister, Charlotte! Unfortunately, Bob has a wide assortment of interlacing issues … the most critical is congestive heart failure. But your post leaves hope for others’ futures. Lea
Sending you both loving thoughts and prayers. Thank you for your courage and honesty is sharing this.
Thank you, Sherry.
Beautifully written. would that we all could have a caregiver like you.
Thank you, Beth. And — I agree. Not everyone has a caregiver, and that is sad. I may face that myself at some time in the future. All best to you ….
Your love for each other is a true testament to what wonderful people you are. My thoughts, prayers, and heart are with you now and for your hopefully long journey.
Thank you, Kay! Lea
Glad to hear that you’re planning another show of his art as well as book promotions. Just as you will always be “The Author” Bob is “The Artist”. And life can surprise you. Deepest heartfelt love to you both.
All true, Julianne. We plan to continue our lives as we chose to live them, as long as we can. Lea
Lea, thank you for sharing this deeply personal piece. I think (from experience) that hospice helps people live and love more deeply. Emphasis on LIVE. (Perhaps unexpected.) Sounds like you were already on that road, even before hospice arrived. Thank you!
Thank YOU, Sandy, for thoughts from your experience.
Lea, thank you for sharing this. I had what I must call the privilege of seeing my father and one of my best friends (that is, two different people) through hospice in the last few years. In both cases it was a very beautiful, loving, and peaceful experience, for me as well as for them. You never know what will happen; life is tenacious, and love even more so. My best to you and Bob. –Eric
Thank you, Eric … and thank you for sharing your experiences with hospice. They do truly seem to be a wonderful, compassionate, organization.
Grateful for these updates, Lea. A thoughtful lesson in living and dying. Simply beautiful.
Thank you, Marian!
Lea, I’m so very sorry but I hope you and Bob will thoroughly enjoy his remaining time and that it will be much much longer than expected. Peace and joy to you both.
You wrote such a loving and caring message about Bob. I send my kindest regards and wishes to both of you.
I enjoy your books and agree Hospice is a gift as is every day we have and share. Thoughts and Prayers as you travel this road as I have been there.
Thinking of you
I love your work its amazing. I’m so sorry that you two are going through this tough situation. You are in my thoughts and prayers. Please feel free to contact me if you need anything. I’ll do what I can to help, even if it’s a listening ear. It’s never an easy thing to go through. I’ve dealt with hospice a lot over the years working in nursing homes and they were amazing with the individuals they cared for.
Perhaps it’s unkind, but I wonder how Bob is doing now, as well as you. I just read for the first time one of your novels and became interested in who you were, you seem like a very good woman and a very nice person. I wish you all the best and hope Bob is well and if not that you are coping with his loss because I know you loved him very much