So very lost and broken

My precious husband Louie, will be gone 4 months 11/7. I lost him to a horrific monster of a disease, Pulmonary Fibrosis. He lived, if that is what one might call it, 22 months after diagnosis. I have been grieving since September 25, 2017, when we learned of his condition. One would think I could have been ready for what has become the most awful time of my life. I feel as though there is a cement wall in front of me and that I am pulling the weight of the world behind me and I am stuck in the middle. Without my faith I know I would be in real trouble. I do not know how I have made it the past 4 months - (well, I do...my faith in God). I have been in a fog and just going through the motions. I go to a Grief Share group on Monday evenings, but I do not really feel connected there.
Hoping I can find someone on here who may have lost someone to this disease. You basically watch your loved one suffocate to death. All and any responses will be welcome. Just feel that sometimes it is better to talk with someone who may not know you personally. I am blessed with many friends, family and supportive church family, but still I feel isolated, empty and lonely; the very best part of me is gone.

 

Hi Cindi,
I’m so sorry for your loss, I understand and feel your pain. I am coming up on one year since I lost my husband. He did not pass from pulmonary fibrosis, he had a massive heart attack on 11/17/18. No signs, we thought he was healthy. Lost my soul mate in 2 hours. It’s been torture, my life is upside down and I don’t like anything about it. I feel for you going through this for close to 2 years. I’m happy you have such a good support group. On this site you’ll find more even more support. Nothing prepares you for this. No matter when or how it happens. And no one really understands how you feel unless they’ve gone through it. People here get it and are here for you. I agree about feeling empty. I feel a piece of me is missing and it’s hard to do much of anything.
Know that you’re not alone.
Take care of you!

 

Hi Cindy
I too am very sorry for your loss and like Robin I feel the same way, I lost my beautiful husband 2 years ago and still feel very lost and alone, there is a saying
That the loneliest road to walk is the road of Grief , That is so true because it’s such a personal loss and no one can feel the same way as you, but we can understand because all of us on this site have lost someone we love dearly, I always hoped I would go before my husband because I think he was stronger than me emotionally and would be able to cope better, but it was not to be, So somehow l have managed to survive the last two years but it is a struggle , I fo have s great family and friends support system but it’s still lonely especially at night but somehow we just carry on
Hang in there
Christine 36

 

Thank you Christine for your response. It is so appreciated! I know I am not the first to go through this, nor will I be the last, and I try to find some comfort in that thought. However, comfort seems to be avoiding me. Louie was my bestest friend, lover, confidant, my safe place, my everything! We did most everything together. It was the second go around for us and we felt we finally got it right. We would have been married only 11 short years on October 18th and together for a total of 14 years. It just was not long enough. I also had hoped to go before him or at least go together. God has other plans. I feel when Louie took his last breath, I did also. I just so bad want to be with him and I know it is not to be. I can't even begin to imagine my life two years from now. Louie told a neighbor that he was married to a "strong woman". I wish I was. Our strength is definately being tested isn't it? Again thank you for reaching out to me! So very nice to hear from you and for you to share your thoughts with me. Hope to hear from you again. God bless...

 

One would think I could have been ready for what has become the most awful time of my life. I feel as though there is a cement wall in front of me and that I am pulling the weight of the world behind me and I am stuck in the middle. Without my faith I know I would be in real trouble. I do not know how I have made it the past 4 months - (well, I do...my faith in God). I have been in a fog and just going through the motions. I go to a Grief Share group on Monday evenings, but I do not really feel connected there.
Hoping I can find someone on here who may have lost someone to this disease. You basically watch your loved one suffocate to death. All and any responses will be welcome. Just feel that sometimes it is better to talk with someone who may not know you personally. I am blessed with many friends, family and supportive church family, but still I feel isolated, empty and lonely; the very best part of me is gone.[/QUOTE

 

Thank you so very much for responding to me! I am now living a life that makes no sense and like you and so many others, I despise what is being called a "new normal". I don't want any part of this, yet here I am, just like you and everyone else on this site. It was so hard to watch Louie suffer for 22 months, just to breathe and try to be strong, and live a normal life, embracing every day he had, no matter how bad it was. So is it better to lose our loved one quickly - without warning, or to know and watch them suffer and deteriorate right before our eyes? I guess either way is the "hardest". It is heartbreaking & life changing no matter how it happens. As I sit in the quiet of our home, I often wonder is loving someone worth what we go through when we lose them? Yet, my strong faith in God tells my heart "yes". It is all part of God's perfect plan for each of us, and I do understand this. It is just so hard to accept it and move on. I want our life back prior to September 25, 2017. I want the very best part of me back! I began grieving the minute we were told of his diagnosis and I haven't stopped yet. I don't know what's up or what's down. I doubt every decision I have had to make because we made decisions together. If it was the wrong decision, we had each other to lean on. Now there is no one. So empty, so broken and so very lost. I try to look forward to a brighter time and imagine my life good and whole again. I do pray that time comes not only for me, but for all on this website that are suffering also. I hope we can stay in touch. My thoughts and prayers are with you! God Bless...

 

I agree, decision making is so hard now. Like you mentioned, my husband and I made every decision together. We didn’t spend money on anything without discussing it. Just how we lived as one. I was sure I’d go first cause Ron was so healthy. I sure was wrong. We hoped to go together. He would be upset that I’m in such turmoil. I often wonder if it was me gone and him left behind, how would he be doing? I know he’d be having a difficult time but he could take care of the house and yard better and easier.
For me, I had absolutely no warning, none. And I went into shock. We had a wonder life and the day he passed we had a wonderful day. Purchased everything for our Thanksgiving dinner worked on winterizing the yard. I made us chicken rice soup for dinner. Everyday stuff. This came out of no where and my head has been reeling ever since. We’re all going through the same things and feels so good to have people that understand what this feels like. People who haven’t been through this have no way of knowing what we need or how we feel. This site is awesome that it helps us find people who get it.

 

Louie was so concerned about my and Krysta's well being after he was gone. Krysta is his only child and she came to be when he was 42. She will be 21bin February. He received custody of her within the first year of our marriage. I was never able to have children, so this was great for me. We were a family. She started 6th grade when he obtained custody and she is now a junior at Butler University. She commutes to school, so she is still home with me. I tell you this because decisions I make have a profound affect on her, and I am concerned that some of the decisions I have made since his passing are sort of questionable after the fact. I had heard not to make changes/decisions until at least a year had passed. But I got caught up in having things done around our home that had been neglected due to his illness. He could fix anything, do anything, build anything...he was wonderful! Now, I have to hire the big stuff done. We enjoyed working on our home together. His job was the outside, while mine the inside, but we always shared the responsibilities whether inside or outside. We even made our bed together most mornings. I just miss his companionship so much! I would only hope if the table was turned and I went first, that he would be able to move on and find happiness, love and joy for the rest of his days, just as I know he wants for me. But right now I feel stuck - I can't move. I feel like I cry on the inside 24/7. He is my first thought of a morning and my last thought before I fall asleep and every thought all day long in between those times. If we were at work ( we were both retired but work part time) we would talk at least 3-4 times if even for a second. I just don't know how to go from a beautiful relationship and a very blessed marriage to nothing. This is how I feel - like there is nothing, I am nothing and there will not be nothing for me again. I pray that just because I feel this way, that God has a plan that saves me soon. Some days, hours, minutes and seconds, I just don't think I can do this "being alone" and without Louie. If I could just turn back the hands of time.....I know it is of little comfort for me to say that it was a blessing to you both that your last day together was good. I know you want more of those last days and feel deprived. I am really the last one at this time in my life, to be able to say the right words to comfort someone. I work at a large hospital, often in the ER as the liaison between a patient's family and the medical team. Normally I feel very confident and poised at comforting a patient's family no matter how dire the situation. But I can't even begin to imagine going back to work. I have been off since the first part of May, and I just don't feel ready to have to deal with all temperaments of people. I feel I am the last one to be able to comfort and assist someone. So I apologize of my words being few in offering comfort to you. However, I can relate to what you are going through, and my heart breaks for you! I pray God's grace and love surrounds you and you are able to heal completely! God Bless....

 

Cindi, I am so sorry for the loss you have experienced of Louie. Living with the pain each and every day is so awful. We wish we could find answers, perhaps why, or why couldn't they have cured him, and on and on we go through our grief and wanting answers.

Each day the tears flow, and we are faced with the loneliness of loss. When Nadine my wife first started feeling sick it was because of shortness of breath. I always thought it was the time of the year thing when flowers bloom and those allergic to it are overcome with the pollen. As time went on and she started using an inhaler to breath, sure she was scared, and so was I as I witnessed her slowly fall from a self confident woman to one with no good answers.

I had no answers for her, nor did those who treated her. Over time her breathing problems became more apparent when she was started having so many things happen to her, like Diverticulitis. One problem after another started to appear, still with no answers.

Yes, I am so happy your faith has helped you cope some. Sharing grief with others on this site has helped me. Of course there are no easy answers, but at least as you reach out others will also see your grief and share with you their loss as well. It is not to compare one person's loss to another, but to show that they too understand how profoundly you are affected, as they too also are.

When we love someone so strongly in life, and give ourselves to them, like them we are vulnerable to them, we know each others frailties and perhaps it helps us some to help each other live through difficult times. Before Nadine died of cancer, she was preceded by her two brothers, and one of her sisters, and then both of her parents. We grieved those losses together, with no easy answers.

Today her remaining sister Linda still stands proudly, bolstered by her friends, her church, and above all else her faith in God. When it came time for Nadine's funeral, Linda was by my side, and helped me plan it and we shared many heartfelt moments together. All I can say is God Bless. Take care of yourself.

 

Cindi, what you have written decribes my life with my husband to a “T” we did everything together! Without Ron by my side I feel so lost. We made our bed together each day, we owned a business together and ran it and worked together each day. I had to close our business, which was horrible. We were together 24/7. As others here know already I suffer from rheumatoid arthritis and osteoarthritis, in most joints. There are things I can’t do because of it or are difficult. Ron, did so much for me, the list is endless. I have trouble putting my shoes on or tying laces, I didn’t even ask for help he just came over and helped me. If I wasn’t at work yet with him, we were texting. I miss his texts so much. My phone feels so dead now. I carry his phone with me and his wallet. Feels like he’s closer to me. On his phone I saw he was searching for a cruise for to go on for our 42nd anniversary. I’ve been with Ron since I was 16 and he was 19. A lifetime. The ambulance people had gotten him outside but not in the ambulance yet, he reached in his pocket to hand me his wallet, shortly after that, he started yelling
“I love you Robin, I love you Robin” many times, at least 5! How sweet is that? I have such guilt, who knows why, but I didn’t answer him. It kills me! people during our marriage and now tell me they were jealous of what we had.
While my daughter and I sat in the hospital waiting for news on my husband we had 2 woman, such as yourself sitting with us consoling us. I don’t know how they/you do that job. But they were wonderful. One had just lost her husband a few months prior, to a heart attack similar to my situation.
My husband could fix, repair anything. Like you, now I need to hire people. I’m not used to that. I hate depending on others. We did everything ourselves. My daughter helps me do things, we’re doing things we didn’t realize we knew how to do. My support group is not large but I do have people that are here for me but I am alone often too. As everyone feels, nights are the hardest. Weekends too for me. Everyday seems the same as the last. I could have written what you wrote in your last post. I am grateful for our last day together, just a normal happy day. I can still picture him picking up the 20 lb turkey at the grocery store and putting it in our cart. He loved getting a huge turkey. He made Christmas so special for me, we made holidays special together. Dreading Christmas this year. Last year it was only a month and a week after he passed. I was in a deep fog but had both my adult children with me and my brother and his wife joined later in the day.
Cindi, I wouldn’t worry that you may have made decisions too quickly. I’m sure it all is perfectly fine. Just be careful as you move forward which I’m sure you were then as well. I was just the opposite I didn’t jump in to get things done. I was paralyzed and chose to do nothing. I couldn’t, for me it was too hard. But then I was trying to empty our shop out. That’s a whole other story but it was so hard seeing where he had put the last things down on his work table. I didn’t want anyone touching his things. Does anyone else find it difficult to move things from the last place your spouse put them down? Maybe it’s just me, I don’t know but it’s been difficult. I know many of your spouses were ill so possibly doesn’t pertain to you, my husband was living a healthy life up til that evening at 9:30 when he started to have virus symptoms that turned into a heart attack.
Cindi, it sounds like you had a wonderful marriage and I’m happy for you for that. Your memories will make you smile instead of cry somewhere down the road. I’m not there yet but it will happen. So glad you have Krysta in your life! I have 2 children my daughter lives 15 minutes away and my son who lives in Florida, I’m in NY. He’s coming home for the one year. I’m planning a small memorial to honor my Ron their dad, the best thing that happened to us!
Thank you for your post, it made me cry. So much like myself and Ron! God bless!

 

Hi Robin! So sorry I am just responding. It has been a bad day for me. The weather is yucky and gray, which matches my mood perfectly. Had a doctor appointment this afternoon so was forced to go out. It sure does seem like our marriages were so very similar! It is good to be able to talk "correspond" with folks hurting like I and especially with someone who I share so many similarities with. Louie was my rock and was always there to help me and take care of me when I had surgeries or was not well. Now, I feel I have no one because like you, I don't want to impose on anyone. I am getting older also, and the arthritis is getting to me, especially my hands. Can't open the simplest thing and whomever came up with this hard plastic stuff needs to be ....well, lets just say I don't like that either!

 

Hi there Dave! Thank you so very much for your response to my post. So very much appreciated, informative and heartfelt. I do not think I could possibly endure this "new normal" without my belief and trust in my Lord and Savior, Jesus Christ. I know he has a perfect plan for me, and I'm sure bringing me to this website was His doing. It is so good to be able, while I am home alone sitting in the quiet, to be able to talk with those that are going through what I am. I have a wonderful and supportive family, church family and lifelong friends, and I don't know where I would be without them. However something is still amiss, and I know the biggest part is the void of not having my precious Louie here. I am just not me, and if this is the new me trying to survive in this "new normal", I don't like it. Normally, I am the one consoling, comforting and listening to people ( I work part time in a large hospital here in Indianapolis), but right now, I cannot console or be comforting to anyone. I just want to get back to being me. I want to go back prior to September 25, 2017, when we learned of Louie's Pulmonary Fibrosis, something neither of us had ever heard of before. Go back and have what we had and I realize that is not to be. He will be gone from me 4 months tomorrow. Every second, of every minute, of every hour of every day gets worse with the realization that he is not coming home, that I will not hear his voice or feel his loving touch. He was my everything - my safe place - my forever. Only our forever ended way to soon for me. It is good to know that I can be in touch with people such as you that understand this type of pain. Praying God's loving hands touch all of us who are grieving so hard, to feel His comfort and grace.

 

Cindi, I’m sorry today was a rough day for you. I agree it’s nice to have people who totally know what this feels like. People who haven’t lost their spouse just can’t understand. They try and want to give support and are available for us as best they can. But people here on this site know exactly what we’re feeling and going through. And I agree it’s almost like a warm hug finding people who get it, plus we have so much in common. I didn’t even know you have RA too. What’s crazy for me is stress affects my arthritis emensely. But I didn’t get a flare up when I lost my husband til maybe a month or so later. That was surprising. Sewing at our upholstery shop was my therapy for my hands. I miss going to work terribly and was such a help. I agree, opening things is next to impossible. I hate this life without my husband. I know each of us hate the life we have now without our spouses. Just sucks
I get what you’re saying about yucky weather matching our mood! I will miss summer and fall. I feel better when I can be outside and feel the sun. That’s coming to an end quickly. Nothing feels ok any more. Hope you have a better day tomorrow!

 

I hope you have a good day tomorrow too! I am going, against my better judgement, to Clearwater Beach, Fl Saturday until next Thursday. One of my besties caught me in a weak moment when I agreed and booked our flight right away. She arranged to be off work on short notice, so I'm sorta stuck. I hope I can come out of my funk somewhat so I am not a downer to her. Hoping the sun shines bright everyday - hopefully this will help my mood somewhat. God bless....

 

Hi Cindi
I have been trying to write to you but it kept telling me I had too many words, I have no idea why, I just wanted to say that I feel the same way as you and Robin, just so terribly sad and lonely my husband was my world to me as well, we did everything together, Christmas will be very hard again this year and even harder for you and Robin as this will be your first Christmas without your husband’s Life just isn’t fair sometimes
But somehow we have to carry on.
All the best
Christine ❤️

 

Christine - Every word you. Robin, Dave have shared with me since I logged on here yesterday for the first time describes exactly how I feel. In 30 minutes, on 11/7, my love will be gone from me for four months. Oh! how I wish I could turn back the hands of time! No one will ever be able to complete me like Louie did! We were just made for one another, but, regretably our love came late in life. We would have been married 11 years on 10/18 and together 14. 14 of the most wonderful, fulfilling, years of my life! I don't want to do any holiday celebrations this year, or ever really. I shall only celebrate Christ at Christmas. I have Louie's 20 year old daughter ( he got custody of her right after we married) and Christmas is Krysta's favorite holiday! This will be hard on her this year as well. I know the firsts of everything are the hardest - but now I believe at least for me, all that follow will be just as difficult. I appreciate your outreach to me! I don't like the fact that their are so many people hurting and suffering from losing the one they loved so deeply and lost, but I am glad I found this sight. Take care and God Bless....

 

Cindi, who knows this could be a good thing, nice warm sunny days. I hope it feels good to you. I went to Florida to stay with my son for a week 5 months after Ron passed. I think it did me some good. But he has a guest bedroom Ron and I have stayed in many times and that made it a bit difficult. But I think it helped me some. My daughter went with me, we decided a get away to see my son. After closing our business we thought might be a good retreat. Closing and emptying our business was a very difficult thing to do. And took a lot of time and energy I didn’t have but I couldn’t run it alone and I was paying rent on it. I feel I couldn’t even start to try to heal til March when the shop was empty. Anyway I hope the trip is a positive for you. Have a safe trip!