Healing Is Fragile

[Guest NancyL]

I live in farm country, so I don't get a lot of sirens etc passing by. Tonight I heard sirens, but when I glanced at the front window, the emergency unit seemed to be going slow, almost like it was going to turn in. I immediately flashed back to the night I called the volunteer rescue unit when I found Don struggling to sit up in bed, when he was dying. Wow, I thought I was better, but apparently horrible memories are just underneath the surface. I re-lived the whole nightmarish night again. I realized when I opened the curtain that the road is ice covered, so travel is slow at best. I'm better now, but hate that I'm not stronger and things like that bother me still. I guess I'm still in waiting mode, waiting to get better.

[jodo]

Dear Nancy,

I can relate so much to what you wrote, I also live out in the country, and we had to call the volunteer paramedics (last Christmas Eve morning- My Dad went into a coma and died a few days later ) , Seeing the ambulance lights , or even worse for me -the lifeline helicopter(which they put him on), always sends me into a panic, and unbearable sadness.

I have been reading some of your posts recently, but don't know your story ? (I will try to look at old posts and find it) How long has it been since you lost Don ? Was it sudden ? I'm so sorry

I am still struggling with terrible grief, sadness , and "Post traumatic stress" even though it's been almost a year since my Dad died, I honestly am not able to see ANY light at the end of this long, dark tunnel, and don't know if I ever will?

You seem like a very strong woman , that gives me some bit of hope that one day I might be also ? I'll look forward to reading more of your posts.

Sending you a big Hug !

Love, Jodi

[Billw]

Hi Nancy,

The flash back or reliving experience seems to be pretty common with people that I have talked with. We have suffered huge loss and in some cases were forced to watch the people we loved pass in front of our eyes. It is hard enough to imagine them gone now but to have to go back and relive some of those moments can be brutal. I was having the same trouble and it got pretty intense at times, I did some counseling the past 6-7 months that dealt specifically with desensitizing these traumatic scenes going through my head constantly. It has finally worked. I still have them from time to time but the intensity and duration have decreased dramatically.

I know they say time heals all wounds but a little outside help has made a difference fro me along with time. We will recover and get through this. I really hope you feel better today, take care...BW

[Guest NancyL]

Hi Jodi, Thanks for the reply. I lost Don this September 28th. We had a perfect life, then 10 years ago he became paralyzed overnight by an autoimune disorder called Transverse Myelitis. There was no cure or effective treatment, so he remained paralyzed from that point on. It was a hugh life adjustment, but he was positive, saying he could either sit around and cry or accept it and be happy. He chose to be happy, and I chose that as well. He had other major health problems, mostly that comes with being paralyzed. Two years ago, he got a MRSA infection in his foot from a pressure sore (from his foot resting on his wheelchair). We immediately went to the wound center, but each time they would cut away the black tissue, it would grow larger, until they told us he had to have a below the knee amputation. Then he became delirious from a medication, and he was out of his mind for almost 3 weeks before I insisted the hospital release him to a rehab hospital where he then got better. That was hard, but he accepted that too and we moved on. Then this May, he began to have signs of bleeding, nose bleeds, blood sores, Petiche (rash). We went to the doctor and he had another autoimune disorder called Idiopathic Thrombocytopenia Purpura (ITP for short). It destroys your blood platelets (which you need for your blood to clot). Most people have between 140-400, Don had 5. I don't think the doctor had a lot of experience treating this, he tried various treatments for it, but didn't seem to know what to do. Don was in and out of the hospital, they at first refused to let him go until his count was above 20, but eventually let him go with a count of 6. He was put on the newest drug, which was suppose to work for almost everyone, and at first it did. His count went up to 99, but the doctor dropped his dose of drug, and his count started dropping. All of a sudden, the drug stopped working, and the day he died, we had just seen the doctor that morning, he sent Don to the outpatient hospital for 2 units of blood. We were there all day, when we came home (he was driving his handicapped equipped van), he drove on the shoulder of the road. I asked him what was wrong, he said the sun was in his eyes. That night, he seemed to be running into things with his power wheelchair. Again I asked him if he was alright, and he said yes. I thought he had taken a pill to help him with his sleep, so I put him to bed. Two hours later, I heard him keep trying to sit up, I went into the bedroom and he had a wild look in his eyes. I asked him what was wrong, and he just said "up". I asked him to squeeze my hand, and he could on one side, but not the other. I called 911 and they took him to the hospital, but they said he never recovered in the ambulance. I never got to say goodbye, they transfered him to another hospital, but by the time I got to see him, they told me he wouldn't make it. Later that morning, they declared him brain dead and unhooked him from life support. He died from massive bleeding in his brain, he had a count of 1 and they said there was nothing they could do to stop the bleeding. This sunday is to be our 41st anniversary, and I'm not strong right now at all. I look at the happiness we had, even with his health problems, and wonder why? Thanks for the hugs, I really need it today I guess. Nancy

[grace10]

Hi Nancy,

Thank you for sharing your story. I am so sorry for your loss. Massive GI bleeding is what caused my mother's passing at age 96. For a few weeks, there were problems with her Coumadin level not being right. It just seemed that anything they tried did not work. I got a call around 3:30 AM, would have been 6:30 AM east coast time. She had a serious GI bleed. The nurse was asking me whether she should go to the hospital for tests. I felt so helpless. I did not know how to answer this, so I said this has to be up to her doctor, but she was DNR, and probably would not want hospitalization,and to be put through tests. I had to get on a plane and out there. She passed around noon. Just reading your story brought this all back. I think remembering and flashbacks are healthy, as they help us to grieve.

[Guest NancyL]

Grace10, how helpless you must have felt being away from your mother and hearing she needed medical help. I'm so sorry for your loss. I hope you're right and the flashbacks do help us heal, I went over every minute( or so it seemed) of Dons last night on earth, and I couldn't get rid of the idea of "if only" (I'd made him turn around and go right back to the hospital). It's all so pointless now anyway to dwell on things. I get up every morning with a positive outlook on the day, but yesterday I didn't get very far. My sister and brother-in-law (he has terminal liver duct cancer) sent me a holiday flower arrangement with a card that said "may you have peace & know you're loved". That set me crying and I struggled throughout the day. A friend of mine just became a grandmother today, everyone is so happy & I am too. I try to look at it as the circle of life thing, joy and happiness that a baby is born, but there will be consequences down the road when there will be sadness the person has died. That's how I hope to get through the days ahead also, happiness when we were married, happiness of our first (& other) Christmas etc. I'll not celebrate the occasions, because I don't feel happy, but I'll try not to be sad either. As I've said before, I'm just waiting patiently now to get better. Please be kind to yourself and and remember the happy times you had with your mother too. Nancy

[melina]

Nancy,

Although I'm slowly feeling more balanced, I still have the occasional flashback from the intensive care ward - especially the last 24 hours before Thyge's death - and of course the final moment. The last words he spoke, the look on his face before and after death, his body - once so alive and then so foreign and "un-him". The flashbacks hit me suddenly and send me reeling. At the same time I get this powerful anxiety and lose track of what I'm doing. All I can think of is the painful memory and all I can do is cry.

I don't think it will be like this forever, but I suppose the pain has to work its way out, just like an infection.

I know what you're going through - more or less. You've been very positive and an inspiration to me with your "I choose to be happy" mantra - hang in there.

Melina

[grace10]

Dear Nancy,

Going over every minute of the last day or night is not really helpful, although we all probably to this. How could we know? There are just so many things we did not know. We are not doctors or nurses. We do not have a crystal ball to look into. In fact, one thing I did not mention before is that part of my conversations with the dear nurses at the nursing home early that morning was: should I get out there or book a flight now? There was not even an urgency, although I made the decision to get out there asap. There really was no prediction or whatever from the wonderful nursing staff that this was my mother's last day. They did not see that. They were thinking hospitalization or wait for the doctor. That's all.

Even the nurse who knew her best on the day shift did not think that she was going to pass on. She was surprised. I do not even know if she was there at the exact moment. I did not ask. If professionals cannot see it, how could I? Her and my friend who showed up shortly after she passed (and I had to convince her to get over there now as she did not get that she was fading fast) felt it was right that she passed by herself. Many people, I think, prefer to die without others around, especially if they are private people, like my mother.

I just think back that everything unfolded the way if was supposed to. It was all under arms of the prayer requests I submitted as well on behalf of y mother for her greatest good. I think we just do the best we can. You did your best. If you are sad, you are being offered the chance to heal a little more.

[wmjsca]

Considering we had been in and out of hospitals for months prior to Clint's final hospitalization, no one was even aware he would not come home. No one knew he was dying all those months and weeks before. We did not have a diagnosis of cancer until four days before his death, so we were basically in shock for his final hours. He didn't seem to know either so there were no 'final words', he was placed in an unconscious state when his breathing became labored. No one knew he was dying until we learned all his systems had shut down. What kind of finality is that? I can't help but go over and over it in my head and I don't think I'll ever get over it.

[Lainey]

I was finding that I kept going back to the days when we had to put Lars in hospice. When the ambulance attendents brought him to the room designated to him, he had a look of terror on his face. I'm sure he knew,as drugged for pain that he was, that this room was where he was going to die.

He was aware of where he was, when we were alone he told me that he knew his time with us was not long.

For the longest time I would see these images in my head, day and night. I wasn't functioning at all and finally gave in to the doctor and am now on a very mild anti-depressant that has helped immensely.

I wish I could have been strong enough to do this without pills, but you do what is best for your health.

Lainey

[melina]

I've also had to resort to antidepressants. I kept going over the terrible events in my mind to the point where I couldn't think about anything else - I was dragged down on this negative spiral. I'm on a low dose, but the pills help me to shift my focus on to other things, so that I can cope with all the responsibilities of daily life.

Melina

[Dimcl]

I was finding that I kept going back to the days when we had to put Lars in hospice. When the ambulance attendents brought him to the room designated to him, he had a look of terror on his face. I'm sure he knew,as drugged for pain that he was, that this room was where he was going to die.

Lainey, this is exactly why I'm so grateful that it was heart failure that took my Glenn. We didn't even know he had cancer until a month before he died. I would have done anything for that man, and spent our last penny if I had to, to have nursing care for him at home, but I also knew that, at some point near the end, even nurses wouldn't have been enough. He'd have needed more and more pain medications and nurses aren't authorized to make those calls. The end result would have probably been hospice care and that would have broken both our hearts. I am just so grateful that horrible alternative was taken out of our hands and I'm just so sorry that you and Lars had to go through it.

[Queeniemary]

Friends, reading these posts, I feel such sorrow for the grief and pain that all of you and your spouses went through toward the end of their lives. My friend Tom and I have discussed a very similar topic. Tom's wife had cancer, and was at home, with Tom doing all the caring for her, until the last few days of her life. My husband, Michael, was not ill, and died very unexpectedly of a massive coronary. Tom and I have talked about, which, if either, is easier, and have come to the conclusion that the end result was the same, we lost the person that mattered most to us in the world. Mike's death might have been easier in that he did not suffer for months, as Ann did. Tom said, that although there were opportunities, they did not really discuss what was coming, he said he and Ann were probably both in denial. Mike's death was so sudden, and I was not even there, and there was no opportunity for even a goodby. I think when you are in a situation like many of you have described, you are mostly unable to get your head and heart around what the end result is probably going to be, hope springs eternal, and I think we always believe somewhere deep down that the final breath is not going to happen. I lost a baby son many years ago, and although we knew he was very very ill, and our minds knew he probably would not make it, my heart never expected to lose him, and when his little body quit breathing, I was in total shock and denial. Only saying this to say, our hearts do not really accept that we may lose our loved ones, and because of that we may not say a lot of things that we later wish we had. I think this is very normal reaction, and no one should beat themselves up. I have just rambled here, but your posts have touched me, and just wanted to chime in. January 13th will be the anniversary of Mike's death. This has been a very hard year, and I will never be the same person I was a year ago at this time. All year long I have been able to say, "a year ago, Mike was still here and he and I were doing this or that". In a few weeks I can no longer say that, and my heart is very heavy. Praying for all of us on this journey we did not want to take.

Mary (Queeniemary) in Arkansas

[Lainey]

Mary,

In some ways I was thankful to be able to have the time to reflect on our life together, although it was very hard. Here we were talking of Lars'imminent death, but we and the children talked of all the happy times we shared. We were able to laugh and cry as a family.On the other hand I think that if had been sudden, though heart wrenching, those last memories that I have engraved in my brain would be less painful.

Lainey

[sunstreet]

Reading all your posts. My heart aches for you all. I did not have to watch Melissa slowly die. I am grateful for that. I think it entirely normal to have "triggers" cause flashbacks for us and for myself I had to seek professional help in the form of E.M.D.R. to help me with it. I want to say more but I just don't have the energy. Know that I understand and I am just so sorry that any of us are on this journey.

Blessings and Courage, Carol Ann

Edited December 20, 2010 by MartyT
EMDR link inserted