I’ve been writing this for weeks, maybe months. It’s on scraps of paper, notes to myself and in my head. It’s my life now – our life. There’s a new rhythm to our marriage that wasn’t what we wanted but life doesn’t always go according to plan so we deal with it, put one foot in front of the other and carry on what with what’s been given us. Part of my struggle with publishing this is that we’re intensely private people. I’ve never written anything so personal before and I wouldn’t have done this if I hadn’t gotten my husband’s support on telling this story. He is, after all, not only my best friend but my biggest fan and critic, as I am his.
I’ll cut right to the chase. My husband is dying. The difficulty of seeing that in print is indescribable. He’s been seriously ill for well over a year, now, and there is no hope for recovery. He has Stage IV COPD – end stage, to be perfectly blunt. His lungs have finally succumbed to too many years of cigarette smoking. Yes, he made bad choices, ignored the warnings and is paying the ultimate price for it. This disease is horrible. The inability to breathe, to take a deep breath, have led to all sorts of damage to his entire body. Every calorie he takes in is just as quickly gobbled up by the labor of simply taking another breath. At 5’7″, he now weighs 108 pounds. No amount of milkshakes or Twinkies can help to put any weight on him, so he is reduced to someone who looks not only frail but fragile. Cooking what he wants doesn’t always work, either. Eating is its own struggle when breathing is the priority. Any part of a meal that’s consumed is a victory, even though it means that he’s totally exhausted afterwards.
Other more undignified things happen to someone with advanced COPD. I won’t detail all of them, but suffice to say that most of his bodily functions aren’t working the way they’re supposed to work. The medications he has to take to stay alive add to the problem. Long term use of prednisone has left him looking bruised, and his skin has the consistency of tissue paper. When he falls, and he’s fallen more than once, his skin also falls away, making for weeks of ointments and bandages until it repairs itself.
The lack of oxygen and poor circulation have made him, for lack of a better description, a little loopy. He tries to find the word he wants to say, and, when he can’t think of it, becomes frustrated – with himself and with me for not grasping what it is he wants. He has flashes of anger during these times, which send me off to another part of the house in tears. I tell myself that it’s the illness talking, but the hurt is still there. I still see the lovely, sweet, kind man I married 36 plus years ago and find it hard to always understand that he doesn’t mean to lash out.
In fact, a lot of my time is spent trying to keep a happy face on while, on the inside, I carry equal parts tension, sadness and terror. Several times a day I check to make sure he’s still breathing, watching for the barely perceptible rise and fall of the bed covers. I take my own deep breath when I see that he’s still with me. It’s then that I can go about my day.
Going about my day is a tricky thing. I have to be ready to change my plans depending on how he feels at any given moment. Our outings have been reduced to numerous doctors’ appointments and, for me, grocery shopping. Getting him ready for his appointments is a marathon session, as donning each article of clothing requires a rest period. His home oxygen machine has to be replaced with a portable model. Extra batteries and medications have to be packed and put into the car. By the time we’ve left the driveway, his disposition has turned surly, as he’s already tired just from the preparation for the trip. Most of the time I try to keep silent on the way, as I’ve learned that my attempts at lightening the mood don’t really matter.
As his care giver in chief, I’ve become an expert on this disease. I’ve learned the language and understand the tests he takes with each doctor. I’m fluent in pharmaceuticals that relate to COPD, and can administer, monitor and look for side effects for each and every prescription. Google is my friend, leading me to websites which explain what the doctors are trying to achieve.
We are lucky enough to have a friendship with my husband’s cardiologist, and she also happens to be our neighbor. She has never lost patience with either of us, or refused to take our calls, even when they’re from me, in the middle of the night, having a panic attack because something doesn’t seem right. During one of my last overwrought conversations with her, she told me that she would see to it that hospice care would be put in motion, and, this week, she made good on her word. A whole team of professionals have joined us. A visiting nurse has been to the house twice, and she, like some sort of medical drill sergeant, has seen to it that we have what we need to make my husband more comfortable. A hospital table, wheel chair, new oxygen machine and special pillow were delivered by the next morning. FedEx has made two deliveries, bringing a plethora of medications.
As much as I find some comfort in having the hospice workers at our beck and call, there is a new sense of dread involved. It’s hard to explain, but I suppose that it’s the sense that this is a real thing, that my efforts aren’t enough. It’s as if the illness has turned into its own entity and nothing I can do will change its course. We’re not in denial about the outcome, well maybe I was, on some level, but this new-found help represents a game changer, in my mind. In one of the FedEx deliveries was a container of morphine. It’s not that I wasn’t aware of the need for it at some point. Our doctor friend had explained why she would order it. I see it, however, as another reminder of the severity of this illness. When I administered the first dose to my husband, my hands shook and I hovered over him until I was certain he was going to be okay. Frankly, I hover a lot lately.
The illness has claimed me as a collateral victim. All of the worry and stress have taken its toll on me, too. Sleep, which has never been easy for me, is nearly impossible now without some sort of medication. Even then, it’s not what one would consider restful. I wake up tense and with a sore jaw, having slept with my teeth clenched. My back and shoulders ache from tension. I pop Tylenol like candy, but nothing really puts a dent in how I feel. It’s there, all the time. I find it hard to concentrate on anything. Reading a book, watching TV or even walking through the grocery store, my mind drifts back to what has taken over our lives. You see, our lives are not ours anymore. The illness is calling the shots, for both of us.
I’ve told friends and family that I feel as if I’m disappearing – the person I once was no longer exists. The illness steals parts of both of us. The couple we were has turned into the patient and the care giver. I miss those people. I miss our impromptu dances in the kitchen when one of our favorite songs is playing. I miss the man who could make me laugh when I wanted to be mad as hell. That used to really piss me off, but I’d give anything for his goofy self again. More than anything, I miss just talking to him. He was always my sounding board, giving me advice or not, depending on the situation. No one knows me like he does and no one ever will.
Our long conversations have been had. The future has been discussed. Plans and arrangements have been made. Grief has already begun. This illness and all of the things that have taken place feel like some sort of long, drawn out dress rehearsal for being his widow. Learning to do everything myself feels like I’m preparing for the time when it will be just me. I spend hours alone, finding ways to keep busy or distracted by other things. The quiet sometimes seems like too much to bear. Despite the people around me and the hospice workers, the journey is incredibly lonely. I cry at the drop of a hat and at the most inappropriate times. Any random act of kindness, even an offer to carry my groceries to the car can bring me to tears. I’m just so tired and overwhelmed, so any help seems like a lottery win.
I’ve learned a lot about life and myself through this ordeal. I’ve found out that I’m not as impatient as I once thought I was. I’ve come to realize that I can’t do it all, and that asking for help is not a sign of weakness. People are more than happy to lend a hand if you just ask for it. I’ve become more tolerant and understanding of those who make mistakes or do things that aren’t necessarily good for them. We’re imperfect beings and, at some level, no one is without their fair share of faults and flaws. The biggest lesson is this though – wherever this road takes us, and whenever it ends, I know that I have been loved, more than I could ever had hoped and for that, I’m grateful.
I AM IN TEARS…. I know I cant be THERE for you both..but you know I am THERE…. we have already talked about this… and tomorrow is my deadline to quit smoking…. all I can do for you is PRAY PRAY PRAY…. I have to go blow my nose
WE LOVE YOU BOTH TO THE MOON AND BACK…
hugs and peace
I am so sorry for the pain you are dealing with, it sounds very lonely. I enjoyed reading your story about your husband, ( not that it is a happy story) but you really did a good job with what your dealing with and how life is. My mother has stage 2 Copd after years of smoking. This made me realize my reality of her some day. Take care, and hope somehow you find the strength to get through this.
Empress, I wish I could take away the pain you are feeling. With time you will be comforted with the lovely memories a lifetime together have brought you. The love and devotion you share is beautiful and will be carried in your heart forever. You have done and are doing all that you can for your husband and he will always be with you, watching over you. Thank you for sharing your story. I am sending you love and strength and will keep your family in my prayers.
I am richer having read your story. I am so thankful you found the words and the strength to become vulnerable and transparent in sharing them with us. You are an incredible woman. I love, adore, admire, and respect you.
My heart breaks for you both. In sickness and in health is recited by every wide eyed happy couple, but when you are in the weeds, you can’t even remember what life used to be like. The fact that only one in the couple gets that care is the other insult from nature. Your partner takes the journey alone, but you prepare them with your heart and soul. It’s exhausting, scary and hopelessly lonely. In his most chaotic moment, his heart will know how you cared for him.
Empress-you are amazing. This is a beautiful tribute to the love story that is your life. Thank you for sharing this.
Empress my heart breaks for you and your husband. Watching your husband suffer must be the worst hand that God can give you. You are amazing. Stronger than many I know. The individuals who work in Hospice are angels. Let them take over and you rest. Thank you for sharing.
So sad, yet so beautiful. You’re in my prayers.
Thank you for sharing your story and experiences Empress. I have been thinking about you a lot lately. You and your dear husband will continue to be in my prayers, my friend. I hope hospice can take some of the burden from you and give you some sense of peace and relief. Love you.
I’ve long followed your blog, only popping in a time or two but always a fan.
First, my overwhelming awe for sharing this most incredible, raw, painful and an infinite number of other adjectives with us. I understand the privacy issue and I tip my hat that you were able to overcome and share. It’s no easy task.
Describing your husbands disease, symptoms, prognosis & day to day issues, most of us take for granted, I can’t fathom the pain in thinking it much less putting it here in black & white.
Regardless, through all the bewilderment & pain, you still painted for us, a beautiful picture of the love you’ve shared for over 36 years. What a priceless gift!
You both will be in my prayers as you walk this road. I hope in some small way, sharing this has made you feel less alone. As my thoughts and those of many others are no doubt with you now.
My thoughts and prayers are with you both!
May you both find the strength and comfort from within each other, for each other.
Your words are beautiful and a testament to the love you and your husband share. Prayers being sent for you both.
Empress, my eyes filled with tears as I read this. How brave of you to share your story. I am willing you the strength to get though this – prayers are being sent.
Empress, Thank you for sharing. I am glad you have hospice to help you both. Your HW friends are surrounding you with love.
I am so sad that you two are going through this. Thank you for sharing, and I’m sending love and light to both you and your husband.
I wish for you peace. I hope you and your husband can enjoy your last bit of time together and that you both are filled with peace.
Empress – Thank you for sharing your story. My heart breaks for your family and you will be in my prayers. A close family member of mine struggles with COPD and I only hope that I can have your strength and compassion as his disease progresses.
I am stunned at the difficulty you are going through, and I wish you all the strength and prayers you will need in the coming days, weeks and months.
As I looked though a couple of bibles looking for words of comfort, I was at a total loss.
Thank you for sharing your very painful journey, I wish you peace and comfort.
My prayers are with you and your husband. I hope you can feel all the love and good wishes from this and Lynnfam blog. (((Empress)))
*hugs Empress really hard* – my prayers are with you and your husband and all of your care – in the midst of all of your sorrow, your fear and your struggle, you allowed us to see the love, the courage and the grace that is also part of your life – your heart holds it all and in spite of your fear, your love for your husband, and his love for you leads you through it – hold fast to that love and know that we are all walking with you – you are not alone – find rest when you can and allow others to care for your husband and take the time to resotre your own strength – may God bless and keep you both – with much love *hugs Empress and Mr. Empress reall hard*
Empress I’m so sorry. I cry for your husband and you as I read this. Wow 36 yrs. Your both lucky to have found each other so many yrs ago. I’m sorry you’re losing your best friend. You’ve done everything possible to take care of your husband and yourself. I hope you can find comfort in that you have the love of a man that holds you in his heart forever. You have lived up to your name Empress, a woman of great power. Bless you both. BIG hugs to you. I feel privileged that you shared your heart with me.
You are both in my thoughts and prayers. Nothing I can say will ease your pain, but maybe knowing you are prayed for and thought about hourly will help.
God be with you, your husband and those caregivers who are now your special visiting angels.
Empress, you both are in my thoughts and prayers. I wish I could do or say something to help fix your situation, it’s truly heartbreaking and I cried for you both while reading your story. When things seem at their worst and you feel overwhelmed, go to a quiet room, close your eyes, wrap your arms around yourself while squeezing tight and think about all of us who care for you sending you love and support. (((Empress)))
With lots of love,
Empress you have brought tears to my eyes for you and your husband’s situation but you have also done me a kindness by describing some of what I will be facing as time goes by. I have moderate to severe COPD. I already experience reaching for words that won’t come and the resultant frustration. The oxygen tubing keeps managing to wrap itself around my leg often causing me to pull the cannula off because the tube is caught on something and I can’t move forward. More frustration. I too get tired just trying to get dressed and completely exhausted lugging the portable oxygen and accessories out to the car. I can’t handle the cold so I have been in the house from Dec. 26 until yesterday when I had to take my car for some work in preparation for getting it inspected. It’s already overdue but I can not live by other’s rules, I can only do what I can do when I can do it because I am alone and must do it myself. You are both so fortunate to have had each other for so long. I do have a cousin who can run errands for me when she has the time, she works and has a dysfunctional family to care for so I try not to ask too much of her. I just wish I had a Sherpa to lug stuff for me. I don’t so I don’t make plans to leave the house very often. I did however push myself today to get a wash and haircut. I feel 10 pounds lighter after the cut. 😀
You and your husband will be in my thoughts and prayers and I wish you well.
Diva you had better make tomorrow the last day for smoking. Mine was 7/5/09.
Empress, I’m very sorry to hear what has become of you and your husbands life. The pain of being caretaker for your best friend is so great, I pray you will find a peace again. I’m not sure you, or your husband will ever know the lives you will touch by sharing this story – in the present and the future -but there is great value in exposing this dark episode of your private life. I applaud you for stepping outside of your comfort zone to share. Keep remembering the good times and God bless. ♡
I am weeping. Struck and gutted, breath catching, whispering yes at so many of your descriptions as I read through this letter of heartbreaking news. Memories flooded, found their way up as I read your words. I want to hold you and tell you I hear you. I want to make you tea and comfort you and cry with you. I hear your wailing mind and recognize the echoes as from my own. You write: the grief has begun and I whisper, yes.
There is nothing to be done for any of it save going through it and reaching the other side of it, praying it doesn’t change you too much, though it will, in ways perhaps unhealthful but beneficial as well. A kinder, softer, more vulnerable you may emerge from this experience. I know you from your calm clear writing, your quiet and thoughtful observations. You are a good woman, and strong too, resolute in your well formed conclusions. That you are experiencing this makes my heart wrench.
This stripping down of the exterior we all have, that all wear as we make our way through this World, Grief does this. It does this like a hot forge, reducing you till the essential parts alone remain. I didn’t mind this aspect. I found out there is so much we don’t need to carry. The mantle will return with time, perhaps lighter, not as tended to with so much care as before, the need for it not as strong. This is not necessarily a bad thing, I have found.
CS Lewis wrote in his first lines of A Grief Observed:
No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing.
The physiological responses felt the same to me. I had to remember to breathe. Music helped. It still does. Remember to breathe my sweet friend. Remember we are all here with you, supporting you and loving you. Because we do. Never stop writing Empress. The Emperor was blessed in picking his wife and my heart is with you both. And thank you both for sharing your words and yourself. We are all blessed. We are all alive this moment. The Present is a gift to enjoy then, isn’t it? ♡♡♡
Beautiful words, Disgrazia. Your handle does not fit you… You are no Disgrazia. 😊
I have no words. I’m sorry and Thank You Empress
Dear Empress, thank you for sharing. We have all missed you. You have been so strong for so long and it was time for you to reach out to others for support. It boggles my mind to think Where would he be without you? You are his strength and I’m sure waking up to your loving hopeful presence gives him the strength to get through each day. You are inspiring and we all need a dose of the reality our friends are really living. That’s what really matters. Sending you a big hug from Texas. Please continue to keep us posted.
Oh, Empress, I’m so sorry, I had no idea you were dealing with such a heartbreaking situation. I’ve watched similar situations play out here in my retirement community and it takes such a toll on the spouse. I’m glad you have people close to you who are helping you and your husband get the outside help you need. And I think it’s wonderful you’ve shared your story here. Though there is very little any of us can do to help, I found after the death of my son that writing about it helped me sort out my emotions and feel less alone. I wish I could give you big hug xoxo
I am so sorry to read what your husband , you and your family are going thought. It’s such a painful and difficult journey- and one that there is never a road map for. I can only hope that you are both finding love and support and comfort. Please know that you are both in my thoughts and prayers.
I must echo all of the comments above, and once again, love how Lynn’s family is always there to support each other.
My eyes welled up while reading your beautiful salute to your husband. My heart is breaking for you.
Please know you and your wonderful husband are in my prayers.
Much love, Sue
Empress, my heart goes out to you. Thank you for sharing this part of your life’s journey.
Evident from the comments you are not alone, your virtual family is with you.
First, let me say that I am so sorry to hear of your husband’s illness. Hospice has helped my family so much when we needed it the most, so it’s good you have that aid and comfort to guide you both. It really is a godsend, staffed by angels.
I know words are so hollow in the face of your sorrow, so I’ll just say that you are a beautiful writer and thank you for sharing your path with us.
May God bless you two through this journey. I am so very sorry.
I know it’s not easy watching the man you love leave. Be strong rely on those around you and know you’re doing all you can! You got this!
Empress, I apologize I have not commented sooner. This was so incredibly moving- there really are no words. I wish you the very best and will hold you & your family in my prayers.
Unlike everyone else, I DO know what to say… I watched a woman wake up out of her 3rd coma. Her son had been there morning, noon and night for WEEKS wondering when he should remove her breathing tube. I heard her plain as day, “I’ll only go when I know you’re ready, son.”
I have no idea how she was so audible with a tube down her throat, and I wouldn’t have believed it unless I saw it. She willed herself to live until her son could handle it. God truly will not give you more than you can take.
You should feel powerful! God thinks you can handle a lot. You’re strong, resilient, and a fighter. You can be giving and vulnerable, but not lose your tenacity for life. You ARE the person who spends hours, and sleepless nights googling possible systemic treatments. Who ELSE would do that for your husband? Better yet, who ELSE would do that for ANYONE? You know your husband, and you know the disease. Your more qualified than ANYONE to take care of your husband.
You’re heartbroken, will maybe drink too much wine, or curse out few of us out… And… Well… most of us deserve it… But my point is that, you got this. It will be resolved before you reach your breaking point. It’s kinda YOUR fault you have such a high breaking point. 😉
I’ll offer my support, but I’ll probably stub my toe, and need your support. I’ll say “stay strong” but you’re clearly doing that. I’ll say you’re an amazing woman, but you know that already. So I think the only thing I can say, is that I recognize and validate your insecurities, and fears. And I’m amazed by your strength… But I challenge you? Are you strong enough to ask for help when you need it? Reach out.
Love and prayers heading your way!