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My husband died of leukemia


Jttalways

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My husband just passed away 30 hours ago. I am numb, broken-hearted, & unable to sleep. I found my way to this forum searching for any semblance of comfort. I am hoping that writing this will be a therapeutic relief for me. My husband was diagnosed with the rare & aggressive mixed phenotype acute leukemia at 34yrs old on February 20, 2018. You think you can prepare yourself for the worst, but you can’t. I am a broken mess of devastation, anger, regret, & sorrow. His only hope was a bone marrow transplant. Everything was ready to go, donor & doctor, but due to many health obstacles, i.e waiting for a fistula to clear up, intestine biopsy & bronchoscopy (both tests results yielded nothing!), & a breakout of shingles, prolonged and prevented my husband from getting the transplant. By the time he was finally cleared to proceed with transplant, he had fallen out of remission. First time, it was a month before transplant. 2nd time, 5 days before. Last time, we found out 1 DAY BEFORE transplant. My poor husband spent most of his diagnosed life in the hospital. Endless rounds of intravenous chemo, his body weakening with each round. Multiple bone marrow biopsy results yielding positive for leukemic cells, resulting in another round of chemo being ordered. Several spontaneous trips to the ICU due to low blood pressure & infection. My husband developed a fistula sometime in the middle of his battle. This fistula flared up and raged every time my husband’s WBCs hit zero. He was in excruciating pain every time it was inflamed. The only brief relief from this pain was intravenous dilaudid, which was usually administered 1mg every 2 hours. After several trips to the ICU due to his blood pressure bottoming out, my husband realized the trigger. The trigger was when he took dilaudid in pill form in between his IV doses, his blood pressure would plummet, code blue would be called, resulting in separate trips to the ICU. So, he swore he would not mix dilaudid pills and IV dilaudid together. Fast forward to this past Sunday. My husband just finished his 15th or 20th round of chemo. His WBCs are nonexistent. His fistula is alive and throbbing. He’s paging the nurse for pain medication. She walks in announcing “the doctor swapped your morphine pills for dilaudid pills.” He had been getting IV dilaudid with time release morphine pills in between. My husband “I don’t want to take dilaudid pills.” Nurse “No, it’s ok, it’s for your pain.” My husband “No.” I jump in since he’s in pain and it’s hard for him to speak, “He doesn’t want to take it because he believes that when he takes the pills and IV together, it causes his blood pressure to drop. This is why he went to the ICU the last 2 times.” She looks at us like we don’t know what we’re talking about & insists he takes the pill. He refuses and I ask her to send the doctor a message to remove the dilaudid pill and reinstate the morphine pill. The nurse says she’s noting in the computer that my husband is refusing the medication and she leaves the room. In an hour she returns and gives my husband his usual IV dilaudid dose. My husband’s pain is relieved and he falls asleep. A few hours later I leave to go home for the night. The next morning while I am at work my husband calls me in a panic. “My blood pressure dropped! They are moving me to the ICU!” I reply “What happened?! Did you take the dilaudid pills?” He cries “Yes!” I cry “Why?” He proceeds to tell me that his night nurse did not offer him any other alternative medication for his pain. So, due to my husband’s anguish, he took the dilaudid pills. He said he took a dilaudid pill at 5:30am, then received his IV dose at 8:30am. By 9am his blood pressure dropped and he had to be resuscitated. When he came to, thats when he called me. Since this has happened a few times before, I reassured my husband that he would be alright and that I loved him. I told him I would get off work and see him soon. Once I got to the hospital they were in the process of transporting him to ICU. As they wheeled him out of the room he was clearly distressed but still coherent and managed to get out a “hi love” to me as they wheeled him to the elevators. Never in a million years would I think that would be the last time I would hear my husband speak. While getting situated in ICU my husband stopped breathing and was revived with Narcan. Once revived he exclaimed to the nurses that he couldn’t breathe, so they intubated him. My husband’s body went in septic shock. My husband spent the last 30 hours of his life in sedated intubation while his organs shut down. I held his hand and spoke to him. I got several responses like eyes rolling towards me, hands moving, arms lifting. But I will never know for sure if my husband heard me tell him over and over that I loved him. While all his organs shut down, his heart was the last one fighting until, rather abruptly, it finally gave out. My husband fought hard. During the last year and 8 months of his life, he dealt with the horrible effects of chemo, including seizures, arthritis, lost of vision in 1 eye, excruciating fistula pain, excruciating nerve pain from shingles, etc. I am angry, broken, and full of regret. The typical regret of “I should have spent more time with him,” even though I saw him every day. More specific “I should have stayed with him that night to make sure he didn’t take those pills” & “I should have pressed the issue and made sure the nurse relayed the message to the doctor about changing the dilaudid back to morphine.” But the 2 bigs ones “If my husband didn’t take those goddamn dilaudid pills, he would still be alive.” And “He never got the bone marrow transplant.” My husband spent 10 weeks out of the hospital this year. I am grateful for that time he got to be home with me and our son. My husband will never age for me. When and if I live to be old and gray, he will be forever young. I pray and hope that he knew how much my son and I loved him.

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Oh Hon, this is heartbreaking to read, you guys are younger than my kids.  To think of you both going through so much, it's so unfair.  My daughter's husband left her, then after 8 months inserted himself back without doing the work that needed done on the marriage, now two years later wants a divorce, wants HER to leave!  I look at everything you guys went through, you had a strong marriage and went through everything together, yet my daughter, who has been with him for 19 years, is left alone through no fault of her own.  I guess there's more than one way for death to occur.  At least in our case our love is intact, that is something.  Forever young.  That's how I feel about my husband, he died over 14 years ago, he'd just turned 51, we didn't meet until our mid-40s.  What you say is what I went through that last day too, as he fought for his life in excruciating pain, I wonder, was he aware that they threw me out and locked the door as they worked on him?  Did he know I didn't willingly abandon him, that I love him more than life itself?!  I pray and hope the same as you do.

I don't know why some people have lives that seem peachy while some suffer.  I used to ask why but finally quit asking, there seemed no answers in return.

I am so sorry for your loss.  I'm sure your husband knows your love for him and your son's too.  I hope you have good support nearby.  And I hope you get audience with his doctor about what transpired, he needs to know that the nurse didn't fully convey your message and this caused his death.  The nurse should be fired.  Medical personnel need to learn to listen.  Sometimes we know something!  They are not gods.  This should not have happened, I'm so sorry.

You've found a good place here with supportive caring people that get it.  Our experiences may be unique, but what we go through has its similarities.  We want to be here for you as you go through this journey.

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I'm so sorry that you both had to go through this and your husband suffered dearly - it's tragic. My heart goes out to you and your family.

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On 9/26/2019 at 5:18 AM, KayC said:

Oh Hon, this is heartbreaking to read, you guys are younger than my kids.  To think of you both going through so much, it's so unfair.  

Thank you both for responding. KayC, thank you for your kind words. It brought me comfort and tears to my eyes. 

 

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 Jttalways, 

I am so sorry for your loss.  Your loss is so new, of course you feel numb.  All the feelings you are having are totally appropriate.  It is not fair, any of it. 

Allow yourself to feel heartbroken, lost , angry, numb. Just keep breathing and put one foot in front of the other and you will find your way.

Peace, 

Gail

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I know you think you will always feel like this and that there is no light at the end of this tunnel.  That new raw grief is the absolute worst.  It's so consuming, it's hard to tell one day from the next.  Your journey has been horrible.  Your husband was far too young to suffer any of this.  I too have to ask myself why, even though I know there is no answer.  Just know that we understand your feelings.  We understand your pain.  There is no way you can prepare yourself for the devastation the follows the loss of your love.  You were trying to be so many things to so many people.  Please don't blame yourself, you tried, you both told the nurse.  I do understand your anger at the medical people as we had a similar incident with a spot on Randy's lung that they biopsied and told us it was nothing.  Guess what?  It was something alright.  

15 months later I still love and miss my husband, I always will.  But it's not that horrible raw grief that you are experiencing now.  My heart goes out to you.  I'm so sorry that you and your son are suffering.  Don't ever doubt that he knew how much you loved him.  Praying for strength for you in the coming days.   

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Thank you all for sharing. There has been so much love and support pouring in that I wish I could tell my husband all about it. Wish I could tell him how much he is loved by all our friends and family. All these people to talk to, except the one person I want to talk to. My husband is still in the hospital morgue and I’ve been wanting to go there to see him. I don’t think the hospital would allow me to and my aunt that works at a hospital said I shouldn’t go there because hospital morgues are a cold and unfeeling place. I just want to see and talk to my husband. I reach for my phone everyday to text and call him before realizing, once again, he is gone. We’ve been together since we were teenagers, almost 17 years. It’s hard to adjust when you’ve spent almost half of your life with someone. Like the one lyric in landslide, “I’ve been scared of changing, cause I’ve built my life around you.” My cousins were visiting and when they were leaving I glanced at the clock and thought “ok I’ll head over to the hospital right now” to spend time with my husband, before realizing again that he is gone. Because for the last year and 8 months, that was routine. Due to my husband’s type of cancer, he had to be hospitalized months at a time for his treatment. Work, hospital, pick my son up from school, hospital, take my son to practice, hospital, rinse and repeat. Many comments in here say it will get better in time. I just miss him so much, I will always be missing him. 

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Ronda is right, the intensity of the pain will lessen.  We never like what happened but gradually we get more used to the changes it means for our lives.  It is such a huge shock to us it takes much time to adjust.

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I too remember constantly reaching for my phone to call or text him.  He would call me every morning on my break at work and I would still expect him to call, that's so normal.  It takes time to break those routines and accept that our loved one is no longer with us physically.  Forgetting that they are gone gives us a momentary break from the grief.  I think that's your brain protecting you from what has happened and giving you time to accept the loss over time. 

I know what it's like to be in a room full of people and still feel lonely.  Going to the morgue is brave on your part and I would want to do it too, but I wouldn't want to remember him that way.  I talk to my husband often.  I have his ashes in my bedroom.  I don't believe that's where the spirit of my husband lives, in those ashes.  That's what's left of the beautiful package that God wrapped him in. 

I am glad you are receiving so much support from family and friends.  Take care. 

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17 hours ago, Rhonda R said:

He would call me every morning on my break at work and I would still expect him to call

I went through that too, George worked at night and I worked days, he'd call me at noon, when I was getting off work, when he was getting ready to punch in, his first break, and lunchbreak...it was so hard in those early times following his death because those times would arise to a silent phone...

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Yes, all these people I can speak to or text, except the 1 person I want to the most. I want to speak to my confidant and best friend. I want the person who loved me the most. I think about that, that no 1 is ever going to love me like he loved me. I don’t want anyone to love me if it’s not him. No one is going to want to hear about the little minute details of my day like he did. Today is 1 week since he passed. I wasn’t there the last time he was conscious, when he was sedated and intubated. I had left while they set him up in ICU. I wish I had been there. I wish my face was the last face he saw. I wish he knew I was with him. 

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On 9/28/2019 at 8:08 AM, Jttalways said:

There has been so much love and support pouring in that I wish I could tell my husband all about it. Wish I could tell him how much he is loved by all our friends and family. All these people to talk to, except the one person I want to talk to. ---  I just want to see and talk to my husband.

Oh, my dear, I know that feeling so well.  After more than a year, that's still what I want.  The one person I could go to for comfort and care is the person who has been taken from us.  Even when I'm surrounded by people who love us both, I still feel alone most of the time.  You and your husband are so young to have gone through so much.  My heart hurts for you.

I talk to my husband every day--yes, every day.  I say good morning to him; I open the shades and look out at the water a little bit in the distance and say, "Look, honey, it's a beautiful day today.  I hope you can see it where you are."  I talk to him about our girls, ask him for help (even though it's my own mind rumbling things around to try to find the right solutions and decisions), and just vent sometimes.  None of what happened was his fault, so I am not angry with him.  But I am angry with the doctors and hospital.  They didn't take his change in symptoms seriously enough or soon enough.  There were small delays along the way that I should have pushed harder.  I take the blame and guilt on myself because I am here and he is not.  So I ask him to forgive me and tell him how much I love and miss him.

Talk to your husband.  Vent and cry when you need to.  If you're a person of faith, it's even okay to yell at God, to ask why a good man was allowed to suffer, to say exactly what you feel.  No God that I could possibly believe in would fault you for it.  Any God worth believing in is strong enough to take our pain and anger along with our happiness and love.

Do keep following up with the doctors and hospital.  They had a duty of care.  Yes, it was your responsibility to be your husband's advocate and you very clearly gave all of yourself to his care and support.  But is was not your responsibility to be a medical professional.  You could not possibly be everywhere and everything at all times.  Please, I urge you to try to be easier on yourself.  Your feelings of guilt and regret are not just normal, but expected.  My husband had bladder cancer and complications from procedures.  Even though the doctors let us down in many ways, I still take all the blame on myself.  The "what if" and "why did/didn't" and "should/shouldn't have" and on and on circle around in my head every day.  I am working on shifting the guilt into regret.  I am working on not blaming myself for everything.  It's a long and painful process, but I think it's something we must try to do.  You gave your whole heart and life to your husband.  I think we must ask ourselves if we'd be so hard on others in the same situation.

It's good that you've found this forum.  We are all here for the same reason.  Though our stories are individual, the unwelcome journey we are on is much the same.  Over time, my overwhelming, raw grief is beginning to soften a little bit.  I don't find myself down in the dark abyss as often, though it is always there.  And I have small bits of hope and light in my life that wasn't sure I'd ever see again.  I grieve.  I will always grieve, but I am learning to live with it as a part of the life I must live now.  We should try not to ask more of ourselves than we would ask of the soul mates we have lost.  It's a long, painful journey that we have no choice but to make.  But when you are here, you will never be alone on that journey.

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I ditto everything foreverhis said.  One week...I remember that time, we never forget it.  I was still in shock, in a fog.  It's been over 14 years now...and I hadn't thought I could survive a week.  No one asked what we wanted, our lives were just hurled into upheaval.  I, too, still talk to my George, and now I find myself talking to my dog Arlie, who I just lost 8/16. I feel very alone and thank God for this site.  We want to be here for you as you go through this.

I wrote this article at about ten years out, of what i've found helpful...I don't expect you to process much of this right now, maybe print it out and save it for a couple months down the road, and look at it every now and then as things hit you at different times on the journey.  I hope something in it helps you, probably the most helpful thing to me was taking a day at a time, and later on learning to look for something good in the day...that takes effort as it doesn't FEEL very good much of the time, but doing this practice can really aid us in our journey.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

  • Take one day at a time.  The Bible says each day has enough trouble of it's own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
  • Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
  • Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
  • Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255
  • Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
  • Try not to isolate too much.  
  • There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
  • Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
  • Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
  • In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
  • Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
  • Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
  • Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
  • Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
  • Keep coming here.  We've been through it and we're all going through this together.
  • Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
  • Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs))) Praying for you today.

 

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Thank you Kay C. Your post is very helpful and I will use your advice. I visited the hospital yesterday. I took 2 fruit baskets and thank you cards with my husband’s picture and memorial service details. One went to his oncologist’s office/department. The other to the chemo floor where my husband spent most of the remainder of his life. It was extremely hard. 1 part of me hated and loathed the place, the other ached and missed my husband so much. Walking down the hall to the nurses station, I wished I was walking to my husband’s room, like I had a thousand times before. I wanted to walk into a room and see him sitting up in his bed, waiting for me. When the chemo nurses saw me, they hugged and cried with me. Even though I am still very angry with the last 2 nurses who cared for my husband, I know the other nurses really did care about my husband a lot. 

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6 hours ago, Jttalways said:

. I visited the hospital yesterday.

You are brave.  Braver than I am.  I have not been back to the hospital where my love died.  I have driven by it a few times and only when I had no choice.  There's an outpatient surgery that I've been needing for a few years.  We put it off because it is not at all a life threatening issue and took a distant back seat to my husband's needs.  I don't know if I'll ever have it at this point.  Not only do I not know who would take care of me for the week or so after when I won't be able to do many things, but because I'd have to go to that hospital.  Even though it wouldn't be overnight, I cannot, simply cannot, bring myself to imagine walking in the same door or walking those same halls.

I would not be emotionally able to see all the nurses and CNAs who adored my husband.  The parade of women asking to come in that last day to see us and to say goodbye to him was stunning.  I considered it a testament to the man he was even in the extremes of his cancer and everything that went with it.

You did a really good thing.  I hope in some small way it gave you comfort and strength.

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8 hours ago, foreverhis said:

The parade of women asking to come in that last day to see us and to say goodbye to him was stunning.  I considered it a testament to the man he was even in the extremes of his cancer and everything that went with it.

While my husband was in the ICU fighting for his life, many nurses came to see him. It also amazed me how many of them were so close to my husband. He did spend most of the 1 year and 8 months at the hospital being treated. So it’s natural to develop close relationships with the staff. It was extremely hard for me to go to the hospital. But it’s Kaiser, so unfortunately it’s where my doctor and my son’s doctor is at. Plus, my son’s knee is injured and he’ll be needing surgery soon. So going to the hospital is inevitable since the ortho is in the same building. I see it as somewhere I have to go so I have to suck it up. But there are other places, movies, songs that I am avoiding that are just too painful right now.

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You ARE brave, it took me a year to go back to the hospital, and when my friend went there years later, the kind nurse (not the one I dubbed the ice queen) asked how I was.  I was blown away that she remembered me/us.

Keep coming here, it really does help.  I listened to all George's CDs and eventually gave some of them away, it's weird how we all handle this differently, but do what brings us comfort at the time.

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4 hours ago, Jttalways said:

But there are other places, movies, songs that I am avoiding that are just too painful right now.

Yes, I completely understand that.  My husband and I are musicians (by avocation, not profession), so there are numerous shows, symphonies, songs, and performance halls/theaters that are too painful to even consider.  We also loved to travel and had special places we visited several times.  People have started to ask me when I might consider traveling again.  My answer is "Not going to happen.  If he's not with me, I have no interest."  Besides, losing his income has meant re-orienting my budget, even though he had life insurance that allowed me to pay off our small mortgage, do some home repairs, and maybe buy a car newer than our beloved 1986 Acura.

Anyway, I still say you are brave to be able to suck it up and do what must be done.  But I guess no matter what, we parents always do that for our children, don't we?  Our girls are two of the things that help me keep going.

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Thank you foreverhis. I was so sad today, missing my husband so much. Staring at a picture of him sitting in his hospital bed, smiling. Yes, our children do keep us going. My son said I was doing a good job with handling all the funeral arrangements. He said “can you imagine if it was the other way around, how dad would be handling it?” Then I thought about that, how would my husband be handling it if roles were reversed?  While my husband was sick, he once did say, that he didn’t have to worry too much if he were to leave us, because he knew I would handle everything since I’ve always been good that way. I find myself looking at other people, random people on the street and I think “It’s not fair. Why my husband? Out of everyone, why him?” I know I shouldn’t feel that way because that’s the way it is, life isn’t fair. Cancer does not discriminate.

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I just lost my dog (cancer) and you're right, cancer doesn't discriminate, it comes unbidden and is a destroyer.  My sweet beautiful dog that never hurt a flea, why should he have to go through this horrible suffering?  I felt kind of like, "I couldn't keep my husband and now I can't even keep my dog?!"  Life is unfair.  I don't understand why some still have their husband and dog and I'm singled out...but I know life isn't fair and it is what it is.  We can't change it.

I am glad my husband didn't have to experience me dying and leaving him alone.  Lord knows it has been hard enough for me to go through, I wouldn't want him to go through it.  The one left takes the pain on themselves.

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Tomorrow is my husband's funeral and I am dreading it. Did anyone else feel that way? I think i'm dreading the finalization, that its actually real, that this hasnt just been a nightmare i cant wake up from.

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If it was just my son and I going to see my husband for the last time, piece of cake. I would like nothing else than to be alone with my husband. It’s the thought of everybody else being there that’s stressing me out. When it comes down to it, it was just my husband and I 99% of the time when he was battling leukemia. I’m anticipating around 200 people at the funeral tomorrow. 

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6 hours ago, Jttalways said:

Tomorrow is my husband's funeral and I am dreading it. Did anyone else feel that way? I think i'm dreading the finalization, that its actually real, that this hasnt just been a nightmare i cant wake up from.

Yes, I believe I would not have handled it well at all.  I have never been good at crying in public, so I probably would have sat there like a zombie.  I actually shocked myself that I cried so often and so openly at the hospital when he was in and out of there over a few months.  But some things simply cannot be contained, I suppose, and fear overrode reticence.  I tried to leave the room, but didn't always succeed.  Several times I just stood or sat there sobbing, "Please don't leave me, love.  Don't leave me."  I'm certain it didn't help him, but I couldn't stop myself.

This is so new and your grief so raw that you must not ask more from yourself than to simply keep breathing right now.

Some unasked for advice, if I may.  If it gets to be too much for you and you feel yourself panicking, make sure you have told someone you trust that you may need them to help you take a break.  Have a signal or something that let's that person know you need him or her to come to you right now.  If you have to go sit by yourself away from others, please do so.  What others expect from you does not matter at all.  Please do not let someone else's expectations make the day harder for you.  Do what will help you simply survive what is bound to be one of the worst days of your life.  And know that we here will be thinking of you and sending you all the love and comfort in the world from people who truly get it in a way most others cannot or do not.

As for me and my love.  My husband asked to not have a standard funeral or memorial, but to have a big party down the road when I'm able to handle it.  I honored that and had a very short obituary published shortly after he died.

But bringing him home from the memorial park/crematorium just about killed me.  It's only 3 miles from our house and a good thing too because I sobbed loud and hard the entire way.  Having them hand me my beloved with instructions on the proper way to scatter his ashes if we chose to do so was surreal, to say the least.  There was a finality in that that couldn't be denied.

Now he sits in his handsome leather cylinder on top of the entertainment center with a casual picture of him and our granddaughter taken in the months before he was diagnosed in front of him.  It's a kind of crappy snapshot type thing taken by me while we were all on a walk by the water.  They are so happy in it that you might think it would be too hard to see, but it gives me comfort.  I tell people, only half jokingly, that he's up there to keep an eye on me.

I do remember my mother at my father's memorial services (two locations; where they were from and where they lived when he died).  She was still in shock, but was clearly going through the motions of "must do A, then B, then C."  My siblings, our spouses, and I took care of many things because my never-phased-by-much-of-anything mother was absolutely unable.  She told us what she wanted and everyone helped make it happen.  It took her 6 months to fully come to grips with losing my father.  And as much as I hate to put it this way, while they were best friends and married for nearly 50 years, I'm don't believe they had the same cell deep connection my sweetheart and I have/had.

After more than a year, it still doesn't seem real sometimes.  Almost every time I come home from the market or running errands, I try to open the door without using the key.  It's as if I can't wrap my brain around the idea that he won't be in the house, yard, or his shop.  Silly, I suppose, but I've learned to accept that grief has no road map and we cannot anticipate what this dark journey will be like.

I'm sending you big warm comforting hugs from the beautiful central coast.

 

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8 hours ago, Gail 8588 said:

I just wanted to get the funeral over with, as our son was getting married 11 days later.  I so much wanted the wedding to be happy. 

I was a zombie at the wedding too. 

I can’t even imagine how incredibly hard that was for you. I feel guilty if there’s a moment I happen to smile or laugh due to something someone says or does. I have a family where most think they’re comedians. So I catch myself mid smile or laugh and stop, thinking I shouldn’t feel any smidge of joy or happiness because my husband is no longer here. But then I know my husband wouldn’t want me to be miserable. I know I wouldn’t want him to be miserable if the roles were reversed. 

46 minutes ago, foreverhis said:

Some unasked for advice, if I may.  If it gets to be too much for you and you feel yourself panicking, make sure you have told someone you trust that you may need them to help you take a break.  Have a signal or something that let's that person know you need him or her to come to you right now

This is good advice. I’ve been having mini breaks downs on and off today. One happened on my lunch break. I reached for my phone to call my husband like I normally did on lunch.  Once the realization hit, I sobbed uncontrollably for 5 minutes. I do not want to have one of these episodes tomorrow. 

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I found the funeral itself soothing, comforting, I had someone officiate that knew him and he was great and did a great job handling things.  My mom was a problem, she was crazy and said inappropriate things, he tried to get the mike from her but she held on with a death grip.  I wanted her edited out of the tape I sent to his kids!  And there was a lady (his friend's GF) that George didn't like and she showed up at my house right before we left for the funeral, that was intrusive, she grabbed his hat and said she wanted it!  I grabbed it back and said it was George's.  I didn't want to be rude but with people like that, that's all they know.  THAT was a bad experience, but the funeral itself was good.  So many people said good things about him, it meant a lot to me when my son stood up and said things about him, that really touched me, most guys can't become stepparents to teen sons as well as he did! They had a great relationship.

The place was packed out, politicians to homeless, he affected lives.

I really hope and pray it goes well for you today and that you find some comfort in it, we will be thinking of you.

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12 hours ago, Jttalways said:

I feel guilty if there’s a moment I happen to smile or laugh due to something someone says or does.

Last Thanksgiving my family, well one of our two sisters-by-choice, gently convinced me to take the train (4 hours) to them for the weekend.  She promised just immediate family, rather than the come-one-come-all it usually is.  It was a family tradition to all be together up there for Thanksgiving and they come down to us for the week after Christmas.

So I was doing as well as could be expected, surrounded by people who love us and who were also grieving.  We were sitting around at our other sister-by-choice's house talking.  She told an absolutely ridiculous, hysterically funny anecdote about my husband.  She is my age, her husband was 10 years older than she, and she lost him to cancer more than 4 years ago now.  She knows; she gets it.  When she finished her story, I laughed.  I couldn't not laugh because it was just so typical of my love and a perfect description of the relationship he had with her.  She looked over and said, "I made you laugh?  I did.  You laughed!" and was so pleased that she was able to bring a little lightness to my life, even if for just a minute.  I went over and gave her a hug.  I asked, "Did you know that he told me you are one of the best huggers ever?"  She smiled and said he was a great hugger himself (he was).  She mentioned how she appreciated that the first thing he did when we came up shortly after her husband died was say, "I'm so sorry" and simply gather her up in one of his loving hugs.  Then I teared up and said, "Well, of course he did.  He loved you, you know."

My convoluted point is that it is okay to smile or laugh.  I takes nothing away from your grief, it's not disrespectful or anything like that, and it's a great reminder that other people in your lives also loved your husband.  Better still, it means that your family is not afraid to talk about him with you.  Many members here will tell you that they'd give anything to have that.  That they feel like no one wants to talk about their loves or that people get uncomfortable when they do.  So please, take those small moments of light and joy.  You're absolutely right that your husband would be happy about that.

12 hours ago, Jttalways said:

I’ve been having mini breaks downs on and off today.  ---  I do not want to have one of these episodes tomorrow. 

It's not surprising at all that you would be having break downs right now.  And if you have episodes today, you're entitled to them.  That's why I was hoping you'd have someone you can signal to come help you.  Remember that how others expect you to act and what they expect you to say do not matter.  This is your husband, your grief, and your experience. 

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I felt like I was in control and handled it well but thinking back on it now, it's all a blur.  I barely remember any of it.  My sister said I was a zombie.  I didn't have the energy to do anything.  I picked out the pictures and she made the picture boards.  She drug me to the floral shop to pick out flowers.  She stood three feet from me the entire time and made sure I drank a little water and had Kleenex or stepped in to give me a moment break when needed.  500 people showed up to Randy's funeral.  We had a large, life celebration immediately after with drinks and pizza for everyone.  Randy's request.  He didn't want it sad.  He didn't want it awkward and he didn't want it quiet.  He wanted people laughing and telling stories about him and that's exactly what it was.  I too was dreading it but I got to hear some wonderful stories about my husband that I had never heard.  Stories I will cherish the rest of my life.  Remind me to thank my sister for keeping my head above water.  Love and strength to you. 

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Oh foreverhis, I am so glad you had that time with your family AND that you laughed.  Yes, it's okay to laugh, we need, actually, to give ourselves permission to laugh.  I read an article about it early on and it really helped me, I wish I'd saved it.
This isn't the same one but along those lines...
http://www.aliveinmemory.org/2013/05/30/learning-how-to-smile-again/

2 hours ago, Rhonda R said:

I felt like I was in control and handled it well but thinking back on it now, it's all a blur.  I barely remember any of it.  My sister said I was a zombie.  I didn't have the energy to do anything.  I picked out the pictures and she made the picture boards.  She drug me to the floral shop to pick out flowers.  She stood three feet from me the entire time and made sure I drank a little water and had Kleenex or stepped in to give me a moment break when needed.  500 people showed up to Randy's funeral.  We had a large, life celebration immediately after with drinks and pizza for everyone.  Randy's request.  He didn't want it sad.  He didn't want it awkward and he didn't want it quiet.  He wanted people laughing and telling stories about him and that's exactly what it was.  I too was dreading it but I got to hear some wonderful stories about my husband that I had never heard.  Stories I will cherish the rest of my life.  Remind me to thank my sister for keeping my head above water.  Love and strength to you. 

I am so glad!  And 500 people, that is a LOT for a funeral, my grandmother's had maybe six.  It shows how much impact he made on people.  Also how much people want to be support for you.  I'm so glad you got the wonderful stories, that's what I loved about George's funeral also.  (((hugs)))  So glad you had your sister there for you, as my kids and sister were there for me.

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The funeral was beautiful. I gave control over to my in-laws to create and do the service program and they did a great job. My son and I wrote our speeches and I was able to give mine without breaking down or sobbing. Everyone told me they thought it was beautiful. It wasn’t a long speech, maybe 2 minutes long. About 300 people attended. There were moments where my son and I took refuge in an empty room there at the funeral home. Only complaint, my husband didn’t look like my husband and I knew he wouldn’t. Before he passed, his kidneys shut down, for 2 days. His body passed no fluids, even though the hospital constantly pumped him with fluids. Funeral was 2 weeks after he passed. So I was expecting a bloated painted version of my husband. I told my son to have me cremated immediately, straight to cremation. I would have cremated my husband immediately, but I didn’t out of respect and consideration for his father and 2 sisters that were out of the country at the time of his death. So I allowed them the opportunity to see him. Everything went well and I think my husband would be pleased. I think my son has been in shock or denial since my husband passed. But when he saw his dad in his casket, my son broke down. He also took it really hard the next day when we said our final goodbyes at the crematorium. We hugged each other as we watched him go in the cremation chamber. 
 

I am very sad today. Feeling extremely sad, missing my husband very much. My son went to a football game so I’m by myself thinking this would be a perfect night to go hang out with my husband at the hospital and watch some TV or a movie with him. I’ve been trying not to think about my husband, I’ve been trying to stay occupied. But today I allowed myself think about him and feel the pain. I am just so broken hearted and sad. I just want to talk to him, lay next to him, hang out, hold his hand, anything. I’ll take anything. 

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On 10/10/2019 at 7:02 AM, KayC said:

My mom was a problem, she was crazy and said inappropriate things, he tried to get the mike from her but she held on with a death grip. 

Oh geez I can sympathize with you. 2 aunts, one mine the other his, were competing for worst speech at my husband’s funeral. My aunt spoke of her messy divorce and how my husband drove her BMW once and he liked the way it hugged the turns. Waited for the point of her story and never got it. His aunt shared a memory of my husband and out of all the memories she could have shared, she chose to share with EVERYONE the time I kicked my husband out of the house and he had to go stay at his grandmother’s house (this aunt lived with his grandmother) for a day or 2. This happened during the early years of our marriage, about 14/15 years ago! I also didn’t get the point of her story or why she chose to share that. Really? They couldn’t have told everyone that he was a sweetheart or something? 

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6 hours ago, Jttalways said:

I also didn’t get the point of her story or why she chose to share that. Really? They couldn’t have told everyone that he was a sweetheart or something? 

Sounds like my mom...I don't think they had a point, just whatever popped into their empty little heads, at least that is how my mom was.  She shared how George was backing up his trailer and she was supposed to be directing him, the step was down and she directed him into a big rock which wrecked the step and he swore or something...only the way she told it she said he backed his trailer up and swore about it, she left out the part where she tried his patience.  Of all the stories she could have shared she told this?  Why not tell how he always came and got her and took her for rides, or how he's swing her around and say "Let's go dancing!" to make her smile.  Why not share how she could always count on him and he was always there for her, helping her with her plumbing issues, etc.

Nope, some people are nuts, inappropriate at best, and no containing them!  I hope someday we can laugh it off...may take a while, it's been over 14 years for me already.

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So I think about my husband all the time, all day long. But if I really start thinking about him, like how he died or the fact that he is really gone, never to return, I feel like I can’t breathe and I start to hyperventilate. Then I try to push the intense thoughts out of my head and try to focus on something else. I’m thinking about seeing a grief counselor but I am not so sure if I should so soon.

i had a dream last night that I had a big bump on my leg and it turned out to be cancer. When I woke up I was relieved that it had been a dream. I also dreamed my husband was trying to hug me but I was trying to tell him that he wasn’t supposed to be there because he had died. Ugh, it was a bad dream. 

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That is a horrid dream, I'm sorry.

I guess I don't think of George being gone forever...I believe in a reunion day, I don't know how I'd get through this if not for that, but the hard part is thinking how long it could be and that SEEMS like forever to me...yet I look back and see over 14 years are passed already so time is moving faster than it seems.  My mom was widowed 32 years.  Oh Lord I don't want to do that long!  I hope I don't live to 92 like she did, but George died when I was 52 so I could have longer to do than her.  She kind of went over the edge IMO but who can blame her.  What is the defining line between reality and unreality?  Between sanity and insanity?  I'm sure people would think me over the edge too if they could look into my home and see me talking to George, but who of us who have experienced this has not talked to them?  It's more common than people realize.

Here's an article on whether to see a grief counselor (remember there is a difference between a professional grief counselor and a psychiatrist or other therapist).
http://www.griefhealingblog.com/2012/10/seeing-specialist-in-grief-counseling.html

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I personally believe that early on is when you need the most help.  I don't know where I would be today or what I would have done without my therapist in the beginning.  I was seeing her once a week and now I make an appointment for once a month and if I don't need it, I cancel.  As with a grief counselor, if you decide to see a therapist, I would recommend seeing someone who has experience helping people with death and dying. 

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 , but who of us who have experienced this has not talked to them?

 

Kay C,  I talk to John all the time.  Sometimes I argue with him.  Recently I was going to go on a trip for a week, and my front yard was looking a bit overgrown because some of the weeds had sent up tall flower spikes.  I was in a hurry to get on the road, but I decided to give the front yard "a lick and a promise" with the mower. I was pushing the mower around just hitting clumps where the tall seed spikes were most prevalent.  John was telling me to do a proper job and mow in straight lines covering the whole yard. I was arguing back that I just wanted to hit the tall spikes and I'd do a proper job when I got back. John was saying  it looks a mess in this hodge-podge mow job.  I told him if he was here he could mow it anyway he wanted, but I was going to do it this way and get on the road.  

It may be crazy to talk to a person who has been dead for over 2 years, but that is how it is with me.  

Peace

Gail

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I don't have a full on conversation with Randy but I tell him every day that I love him and I miss him.  Gail, I don't think it's crazy at all.  You knew your husband so well, you can carry on his side of the conversation for him.  Until someone has lost their everything, they have no room to judge.  If they have lost their everything, they won't judge, they will understand. 

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Yes, I do think it is me carrying on his half of the conversation.  He always took pride in our yard. If he were here, he would have taken the extra 10 minutes to do a decent looking mow job.  But everything the two of us used to do, is all on me now. And at times I am just exhausted doing it all. 

My "argument" with John  was more me justifying to myself that my "lick and a promise" was all that I could do on this particular day.

I don't really think I am delusional.  I am just still thinking like we as a team thought. We would have wanted the front yard to be decently mowed, because we liked living in a neighborhood where we took pride in the appearance of the yard. We like our neighbors and don't want them to have a view of a messy yard.  I still have those values and standards, but I alone can't do everything that John and I could do together.  My argument was more me defending my decision to do a less than ideal job.  

Gail

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I love reading that you have conversations with your husband Gail. I don’t have full blown conversations, I’m more like Rhonda and I’ll say out loud I love you and miss you to my husband. My son had knee surgery today. Before my husband passed, he did not want our son to have surgery and was worried about it. After the surgeon came to the waiting room to tell me the surgery went well and my son was fine, I went to the restroom and broke down. Sobbing I said “he’s ok Love, our boy is ok.” My husband and I called each other “love.” It was hard for me to keep it together. My son’s surgery was at the same hospital & same floor that my husband passed away at, EXACTLY 3 weeks ago. Everyone tells me “you’re so strong.” I don’t know if I’m strong or if I’m just good at compartmentalizing.  

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JTTalways,

It is amazing what we are able to do during this time of unbearable sorrow. 

Our youngest son's wedding had been planned for March 18. John died on March 3.  I wanted the wedding to go on as planned, and I wanted as much time as I could get between the funeral and wedding, so I rushed to organize a funeral on March 7. Over 300 people came. Then eleven days later we had the wedding as planned. 

Everyone said I was so strong.  But it was not true. I was a zombie/robot going through the motions of life.  I couldn't remember people's names who I have known for decades.  I have no idea what I said to people. The food had no taste.  I wanted my son and his wife to be happy, so I did my best to smile and be present, but I was not truly there.

Honestly, I think I was a zombie for at least a full year. 

At 2 1/2 years, I still struggle with 'why am I still living?'. 

I do talk to John every day, and usually it is just me talking (not him answering back).  Sometimes he does 'talk' to me.  Not as a ghost or anything, just in my head, like the yard mowing argument.  Best of all is when I dream of him, then we do have long talks. 

Keep on putting one foot in front of the other and doing the things that need to be done. I am so glad your son's surgery went well.  It will be good to have his recovery to focus on over the next few months.

Peace

Gail

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On 10/15/2019 at 4:56 PM, Gail 8588 said:

My "argument" with John  was more me justifying to myself that my "lick and a promise" was all that I could do on this particular day.

I get that completely.  I do it all the time.  Then I'll look up at his picture and say something like, "What?  You don't get to be upset about that because you're not here.  You left me alone."  Of course, I follow that with something like, "I know.  I know you didn't leave me on purpose.  You would never have left us.  But you're still gone. I'm mad and I hate it."

It has nothing to do with denial and everything to do with connection.  I wonder how common that is.

 

On 10/15/2019 at 4:56 PM, Gail 8588 said:

  I still have those values and standards, but I alone can't do everything that John and I could do together.  My argument was more me defending my decision to do a less than ideal job. 

Exactly.  I do what I can, at least when I can bring myself to do things.  Now I have to figure out what I can afford to pay someone to do that I can't.  And his house and yard repairs, maintenance, etc. that I can do are incredibly emotional on top of being challenging physically.  It just stinks, there's no two ways about it and there's no hiding from this soul crushing grief.  Yet, I still try to make him proud of me, even though I know some things simply won't be up to his standards.

 

On 10/15/2019 at 6:32 PM, Gail 8588 said:

Everyone said I was so strong.  But it was not true. I was a zombie/robot going through the motions of life.  ...

Honestly, I think I was a zombie for at least a full year. 

At 2 1/2 years, I still struggle with 'why am I still living?'.

Those are things most people don't understand at all.  I usually feel as if I'm just pretending to have a life.  It's 15 months and I don't feel hugely different.  I can say that my grief is not as raw or unrelentingly painful.  There are hours when I can honestly say, "That was okay" and smile or laugh.  There bits of hope and light that maybe I'll be a little happier down the road than I am today.  But as happy deep down as I was?  No, not going to happen.  Even during our hardest times that cell deep underlying connection of love and friendship sustained me.

Sometimes when I'm feeling particularly depressed, I'll say, "I can make it another 8 years until our beautiful granddaughter starts college.  Then you need to come get me, okay?  Please come get me.  I don't think I can do this for the next 20 or 30 years."

I realized something the other day.  When I say I'm "not doing well" or "not feeling well" or some variation, people, even our daughter, will often ask what's wrong or why.  Now, I know they mean "Is there something specific that's new or that I can help with?" or because they're asking about my medical conditions.  My grieving is pretty much a given.  I have to admit that I often have a knee-jerk reaction of irritation or "Are you kidding?"  I can talk about a flare of up one or more of my auto-immune conditions or just say, "I'm feeling really down."  But there are no words in the English language that can explain what this kind of grief is, how it feels, or the depth and infinite nature of it.  How do I put into words what it's like to lose so much and know that the scars will never completely heal? 

One reason I find our forum here to be so comforting is that I don't have to try to explain myself or my grief.  You all know in a way no one else can.

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Most of my conversations are one sided but once in a while I feel he's telling me something...of course we all know "what they WOULD say," we knew them through and through!

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I don't think it's denial or delusion, I think it's great.  I don't know why I don't do it, I wish it came natural to me, it just doesn't. 

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Instead of “what would Jesus do” I do a lot of “what would my husband do” or say. I’ve always been a hard working, independent type of woman, a quality my husband admired the most about me. He would turn to me for help with things that the man of the house would normally do. So when I get things done, I like to think that he’s watching me and thinking to himself “that’s my girl.” 2 days before he passed, our car got a flat tire. First time ever I put the spare on and took the tire to the tire shop for repair. My husband FaceTime’d me while this happened. Even though he was in so much pain, he gave me 1 of his “full of pride” smiles. He knew I would take care of everything and raise our son the best I could if he were to pass. He didn’t have to worry about that. 

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Wow!  I've never changed a tire...I don't have the strength but then I'm 67 and full of injuries.  Last night I think I broke my thumb, will give it time to heal and see if it's just severely bruised or broken, hoping the nerves aren't damaged.  I'm learning just how many things you use your thumb for!  And I'm still trying to heal my shoulder from an injury three weeks ago.  

I imagine your husband was very proud of you and is still!

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2 hours ago, KayC said:

Wow!  I've never changed a tire.

When I was 16, my parents gave me their 1967 VW bug to drive.  It was manual transmission and I loved it.  But before I could have it as mine, my dad made me learn how to change a tire, the oil, and the spark plugs.  By which I mean, he actually made me do it.  Boy was I glad the day that I had a flat long before we had cell phones to call AAA easily.  Now, I'd absolutely call AAA.  I kind of hope the car I end up buying has those "run flat" tires you can drive far enough to get off the road and to a service station.  I can imagine doing it if was a matter of life or death, but it really would have to be that serious.

Here's a great "that's my husband" story.  When our daughter was 16, she was ready to get her license.  But like her mama before her, her dad said, "First I need to make sure you know how to change a tire.  I'll go get what I need."  Now, she'd had the classes and knew what the process was, but she's thinking, "Okay, I'm going to watch him do it."  So he walks out of the house carrying his hat, a folding lawn chair, and a soda.  He puts on his hat, opens the chair, sits down, pops the soda, and says, "Okay, go ahead."  I was watching from the living room and had to laugh at the stunned expression on her face as she said, "But, I thought..."  He smiled.  She changed the tire.

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2 hours ago, KayC said:

Last night I think I broke my thumb, will give it time to heal and see if it's just severely bruised or broken, hoping the nerves aren't damaged.

Oh no!  I have a condition that affects my wrist and hand joints.  They always hurt some, but when it flares, those joints are so hard to use and hurt like a...you know.  I can only imagine how much worse it would be if my thumb was actually broken.

Have you splinted it to keep it protected and in place?  Bruised or broken, it's still going to be just one more thing for you to deal with right now.  I'm sorry this adds one more challenge for you, especially because I know how hard it is now that you don't have George there to help you.  Darn it all.  It is simply unfair to burden you with yet another challenge. 

I'm sending you comforting hugs today and will pray that it is "only" bruised.

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Oh no Kay, I hope you have a speedy recovery. Yes, you should splint it if you haven’t already. To be fair, my job is pretty physical so I can’t act like I’m a flower that rarely gets her hands dirty. Thank you for sharing your tire changing stories foreverhis. You had 2 men in ur life that wanted their daughters to be self sufficient and self reliable. I love that.
Grief is like PTSD. While my son was having surgery, there were many “triggers.” When they inserted his IV & when I helped tie the back of his hospital gown. I kept tearing up. The nurse must have thought I was a super sensitive mother worrying herself to death over her son’s simple knee surgery. 

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Now that you've reminded me, foreverhis, I think we did when we took driving class, but that was before they tightened them pneumatically.  AND I was a teenager then.

5 hours ago, foreverhis said:

Have you splinted it to keep it protected and in place?

I'm thinking it's just severely bruised, I'm hoping there's no nerve damage, but honestly, last night I thought it might be broken.  There's nothing to splint, it's not crooked, it's just swollen and purple and hurts like hades.  I'm more worried about my shoulder, it's been three weeks but since I have no one to help me I don't want to think about it requiring more than just time to heal.

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5 hours ago, foreverhis said:

It was manual transmission and I loved it.

The Bug was one of the cars I learned to drive on, my boss's.  I loved how it fit me (I'm short) and I've always loved manuals, I just went to an automatic last year because of my injuries.

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