Living a chronic life
My husband is dying. No, that’s not quite accurate; he’s been dying for years. Let me explain… Bill and I have been married for 26 years. He is 61years old and has been a Type I diabetic for the last 50 years. He has lived a full life of career, family and friends. In the past 5 years he has lost half of one foot, one leg, vision in one eye, had 4 heart attacks, and one stroke. Somehow he managed to survive all of that. Some say it’s because he’s married to a nurse, others say because he’s to stubborn to die. I think it’s a bit of both.
This isn’t about his diabetes, or multiple medical problems. This is about the diagnosis that threw us all for a loop. He was diagnosed with advanced gastric cancer a month ago. My first reaction was “are you freakin kidding me?” I’ve watched the decline over the last decade, but CANCER…NO, the diabetes is supposed to be the reason he dies, not cancer. I know what to do for the diabetes, the heart disease, the depression, I don’t know what to do with cancer! I can regulate the sugar, I can stop the angina, I can give the drugs, I can do the wound care, I can be the physical therapist….but cancer with no effective treatment, I don’t know what to do with that!
As a family living with someone with a chronic disease, we have talked about end of life care. I know his wishes well and kept my promise and he came home with Hospice. I fell right back in to the same “treatment” that I’ve done for years. I continued to give the Plavix, Toprol, Amiodorone,Lipophen, making meds sheets to track when the morphine, ativan and ABHR gel was being given like clockwork. I took vital signs, gave hygienic care, out of bed to the chair, all like things were the same as before…but they weren’t. I got the hospital bed in place, the commode, shower chair and every piece of equipment that a “hospice” patient could need. He couldn’t eat solid foods, tolerated small amounts of liquids, voided less and less but I continued to search for the liquid that would provide the nutrition that I felt was so important. Over the next few days the deterioration was not to be denied. I was carrying him to the wheelchair, instead of him transferring, the weight loss was staggering and he was becoming more and more confused.
And then the reality hit. I couldn’t fix this one. I couldn’t make this better. I was going to lose my best friend and there was nothing I could do about it. My epiphany had hit. This wasn’t about providing good nursing care, this was about dying. That’s when it became about him and not the “stuff” that used to seem so important. I didn’t have to watch for every symptom and decide if it was something we could handle at home, or if it required a hospital trip… I could breathe again. I was released from constantly having to make those decisions. This diagnosis that I couldn’t accept a month ago, had given us all the freedom to breathe again. Bill never had to worry about going to the hospital, which he hated. It was a calm that we all felt. He hated the hospital bed, and just wanted to be in his own bed, so that was what we did. He wanted a Kahlua and cream and that’s what he had. We stopped his cardiac drugs, oh a massive heart attack would be so much better than this. I changed his insulin to just enough to prevent huge swings in blood sugar that made him so sick. The small heel wound getting bigger didn’t start the internal dialogue of “do I call the podiatrist, how I am going to get him there, what product I should use to fix it”…we just let it be. I was no longer his nurse, I was his wife who was going to be there for him, to make him comfortable and ease his journey. It was time to put away the technology and get back to basics.
The strangest part of this was how life just moves on. You still have to go to the grocery store, do laundry and pay bills. We entered into 4 weeks of normal daily activities, except that Bill was in bed. Each week brought a new decline. Drastic weight loss was now very noticeable, his fluid intake was decreasing, hallucinating, and talking to people who I couldn’t see, but then we had days where he would drink everything he was offered without a problem and he would converse with a friend about details of his old job. What a roller coaster of emotions. I know that he is dying, yet I am able to watch a favorite television show as if nothing was wrong. This “normalcy “of day to day continued until today. It’s been 4 weeks since we got the diagnosis. I was beginning to think he was going to live forever like this. This morning signaled the change that this journey was coming to an end. He can no longer swallow liquids and complains of chest pain. His speech is slurred and breathing is more difficult. He’s doing that “puffing lips” thing that I’ve seen in so many past patients of mine. He has a fever and despite insulin, his blood sugar is all over the place. Now is when I have to hold it together and keep the promise that I made so many years ago. I give morphine and ativan freely which calms him, but at the same time removes him from us. This is a whole lot harder than I expected it to be.
I’ve talked to him a lot today. I’ve told him it’s ok to go….which resulted in the one clear sentence we got, “I want to go to the shore”. We’re Jersey people and Bill loved the shore (beach to those non Jersey folks). So I told him to go to the shore, see the waves and feel the sea breeze, and that it was ok to go. I hope this is what they mean when they speak about symbolic talk. I know in my heart it is…..and he needs to go to the shore and be at peace. We’ve all cried today. I cry for what he has been through, I cry for what we, as a family, have been through, but most of all I cry to God to please bring him home. Enough.
24 hours later God answered my prayer. Bill passed away in my arms, in his own bed as he wished. I kept my promise, but the internal dialogue in my head is disconcerting. The nurse in my head questions if I did enough, could I have done something else? Then the logical side kicks in and I have to ask myself the question….would I want him here in the condition that he was in? The answer is obvious. That is what I hold on to. He lived a chronic life where he battled a horrible disease every single day….his fight is over and now he’s at peace. Now what do I do?…..Bill’s day to day needs have been my life for 26 years. I guess for now I just breath and see what life has in store for me beyond this.
Laurie
Hey Laurie,
I love your story. I know how it hurts. My story (which I have not told yet really) is not unlike yours. The sick live even if their they know it is not for long. But comes a time when living is dying. I remember when I realized my mother was leaving me. I watched myself turn around and change my whole purpose. If I ever loved her well I loved her better then. Nothing I ever did was harder but it was so simple really, to give myself over to the one thing that mattered most. You did good Laurie. Your Bill knows it too.
Peace to you. CJ
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Thank you all so much for your kind words. Each day brings new emotions, but I take each one as it comes. I’m back at work, which is a good thing. I’m blessed to have a job that I love and coworkers who are amazing. I miss Bill terribly, but also know that I wouldn’t want him back if it meant that he would continue to suffer.
His funeral was a testament to his life. So many stories of those that he had helped over the years, some that I knew about, others that he never revealed. He was loved and respected by so many.
The nurse in my head is back to being logical again. My initial reaction was to “find something to fill the time”….but as the days go by, I’m just going to “be” for a bit.
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Laurie,
Someone on this site gave me the advice to just “be” after my husband passed away and it was some of the best I received. Took away so much of the angst and guilt about what I “should” be doing. We spent a lot of time caring for our loved one(s). I think we need to refill ourselves slowly, basking in the love and blessings from our caregiving friends-wherever we may find them!
Betsy
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Dear Laurie, we have been gone for most of the weekend, so I just read your story now. I was so moved and touched by what you were able to put down in words. All of my fellow DHL friends have given you every bit of feedback that I would have. My sympathy is w/you, Laurie. Be kind to yourself, and maybe once again read what you posted on this website. For years, you provided Bill with the best of care, and you made his last days on this earth more peaceful. Bless you for your kindness. I’m sure Bill is enjoying his time at the shore in a different place now…and I’m sure he’s looking over you with feelings of love, gratitude, and pride.
Much love,
Ann
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Hi Laurie, your story and your way with words brought me to tears. I went on your journey with you & Bill. Forgive yourself for anything you feel you may have needed to do differently-that is the only thing I can think of to say. Your strength, kindness and love of another human being will get you through these months. I wish I were there on the Jersey shore to walk with you and cry with you and smile with you. Please keep us all posted here on you. Melisa
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Laurie, my thoughts and prayers on our loss but how wonderful that he could go on his terms and with you by his side. I am a “jersey girl” and know what you mean about the shore, having spent many wonderful days and nights at Wildwood and ocean City. I now reside in Florida and the gulf coast, Anna Maria Island, have become my shore. My prayer for you and your family is for peace, comfort and strength thru these coming days. Please visit us often and let us know how you are doing. This is a wondeful site and brings me such comfort. Love and Blessings-susan
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And please, God … bless us … every one.
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Dear Laurie, forgive me if I say what others have said on this most wonderful of all sites. You and your husband fought a long very hard battle. I so admire you for being able to be here,now …. please come back. I am truly moved beyond words, at this point to say more.
I do so want to comment, but your story has moved me, as I am in a semi similar state. Please forgive me for not saying more, than wow you did a tremendous job, give yourself a pat on the back, and try to give yourself some well deserved rest.
~Char
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Dear Laurie,
Bless you for the loving kindness with which you cared for Bill. I know it must be very hard to wonder if you did the right thing by changing the way you treated him (from nurse to wife). As I read that part of your story, I was overjoyed that you had the sense to do so. Like you (and so many caregivers), I, too spent much of my time pursuing the avenues I thought would cure my husband–so much so, that now I regret not spending more time just “being” with him before he passed away. Regrets have been a part of my grief experience, even tho’ I had tried so hard to think ahead in order to avoid doing/not doing anything I would be sorry about later. But we caregivers have to remember the pressure we’re under as we care for our loved ones. As you said, real life is still going on all around us and our duties are many. For we caregivers who have lost our loved one(s), there is now more time (and hindsight) to reflect on what was happening. Please don’t waste much time with regret. None of us do it perfectly, but our efforts show our hearts have been in the right place and our loved ones know this. I am sure your Bill did.
I think it is wonderful that he lived such a full life, despite his diabetes. I am so glad that you have that beautiful day to remember, when you talked about him going to his beloved shore. I can’t imagine a more wonderful way to pass from this life than what Bill experienced: talking with his best friend about his favorite place to be, lying in her arms. I hope that memory will bring you comfort.
Like you, I wondered “what do I do now?” and I had only been a caregiver for less than 5 years. My husband passed away last November and I am starting to rebuild my life, in very small steps. The grieving takes time and attention, but I believe there will be more joy. As I slowly “come to” I am learning to live, albeit differently than before. People say good things come out of hard times. I’m beginning to see that. (My spiritual life has expanded for sure!)
Blessings to you, Laurie. You have definitely found a very good place to be, here at this amazing website for caregivers. I am always so touched at the caregiving that goes on in these pages daily. Take good care of you, and let us know how you’re doing.
Betsy
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Sorry, I didn’t mean to be anonymous on my comment!
Betsy
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Dear Laurie, I have been so moved by each and every story on this website. Yours brought tears. You have amazing strength, very much like someone I have come to respect and admire, her name is Jean. I’ve been married for 26 years to my best friend and I can’t imagine my life without him. If that time comes, I pray that I have the strength to be as strong and selfless as you. Within the last few weeks, so many of my loved ones are having health issues. We are currently waiting on test results for my only sister, who may have breast cancer. It’s a very scary time. For you, the healing path has begun, I pray that it is full of wonderful memories. Thank you for sharing yours and Bill’s story with us.
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Dear Laurie, you sent me your story on the day I was at the memorial dedication for my husband and I’m only just posting it – I’m sorry it took me so long. I’m sure there will be many tears shed here while reading your and Bill’s story. My tears were for you, because I know what you went through, and know the strength and willpower it took to do what you did for Bill. I’m sending a hug to that nurse in your head – she is a hero, and never doubt that. Thank you so much for sharing your experience and feelings with us, and so eloquently. I know it will help countless other caregivers. My condolences for your loss. Peace on your poor heart. ~ Jean
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