Unfortunately now a member

[Marcel]

Don't get me wrong with this headline. I only read through a couple of posts but it seems that there are a lot of compassionate people here, who, unfortunately as well, know what they are talking about. This might get long, so bear with me.

I met my wife in 2008, after living alone for a long, long time. In 2012 we and her daughter moved together, shortly after that she got ill. She was constantly dizzy, she had numbness of her limbs as well as sudden intense pain that would have her scream out loud. Her vision and hearing was impaired and she had things just falling from her hands when she tried to hold them. Over the next years we'd been to almost 30 doctors of all kinds, health practitioners, homeopaths, ghost healers etc. Noone could help her, noone could even tell what was causing her problems, a lot of them didn't even care or just called her a hypochondriac.
In 2014 we got married. Early last year we bought our own house. But still her health deteriorated.

I already had an arrangement with my company, that I would only be in the company till lunchtime and work home office in the afternoon. But last summer I had to give up my previous job to stay home all day. A few weeks later, during breakfast she just fell of the couch screaming. She felt like she was thrown off a high building, even if she lifted her head just a bit. I called the ambulance and we rushed to the hospital for the most inhumane treatment imaginable. Basically they just checked for MS and a few possible infections and sent us home two days later. I had to roll her out to the car in a wheelchair.

I think that was when the last bit of hope collapsed. We still had an appointment with a private clinic that specialized on multiple systemic diseases. By that time she was close to being a complete nursing case. When she was 12 years old, her mother died slowly from MS and it was her greatest fear to end up like her, not having a say in what happens with her.
So last september she took her own life. I knew it would happen when she sent me away that evening. I had to promise her a long time before, that when she couldn't take it anymore, I would let her go. I was able to talk her out of it many times, but not that day. So I got into my car, drove around aimlessly the entire night, and when I got back the next morning I found her. She was just 45 years old.

My wife was the most life-loving, caring person you can imagine, but the illness eventually brought her down. I still can't believe, how someone like her would have to suffer so much. She would have given the last shirt of her back to a stranger in need and throughout her sufferings her main concern was, that she couldn't take care of others the way she used to.

Since she's gone I haven't really dealt with her passing at all. I somehow try to pretend that the entire eight years we'd been together never happened, which of course doesn't work either. I'm living in our house with my stepdaughter, and she's the main reason I didn't follow my wife right away. We support each other and I also have support from my parents and my best friend.
Still I have no idea how to get my life back on track. Well, actually I do, but I can't get myself to do it. At the moment I just function, that's all.

Marcel

[KMB]

Marcel, ----Functioning, for lack of a better term, is all that we are able to do for a long time. Be patient and kind to yourself. I do things on autopilot. I put food and water out for the pets, let the dog in and out. Pay bills, etc. Just the basics of existing. I could be doing more to try and get myself into an easier place of acceptance, of living, but the motivation, finding a real, solid purpose to it is not in my grasp. I am emotionally, mentally, exhausted. It is going to take time for you. Just take your time, no rules in this grieving journey.

I am so sorry for the tragic loss of your wife. Her pain must have been horrendous for her. It is devastating that the medical profession could not correctly diagnose and treat her symptoms. So stressful and frustrating for you both.She had a heart of gold, kept on living, loving you and her daughter and others through it all. She had quality of life until it got unbearable for her. She did live life, she loved and was loved in return and she is to be admired and respected.

You will survive. Hard to believe, I know. We are not given a choice. You have yourself and stepdaughter to take care of. You'll support and love each other through this journey. I know it won't be easy. It is going to be the hardest ordeal for you. I'm glad you have support from your parents and best friend. We need all the people we care about and who truly care about us, during this time. The only way through this journey, is to meet the grieving, the loss and the pain, head on. Let the emotions out. Cry, scream, punch pillows. Go drive out in the middle of nowhere and scream. Whatever it takes. I talk to my husband out loud, in my head. I write a letter to him every night. This is an individual journey and you will find your own coping skills.

Please keep posting. There is no judging here for whatever you want to let out. We read your words. We hear you and understand. People who have not experienced our type of loss do not *get it*. On this forum, we do. take care of yourself and your stepdaughter. Your wife would want you to do that for her.

[KayC]

Marcel,

I am so sorry for the loss of your wife, and very sorry the system failed her, that they didn't diagnose her and offer her help.  It's hard not having answers.  

Self-care is very important in allowing your brain its optimum chance for recovery, this is very hard on our brains, we're taxed, we're overloaded, we experience brain fog, and about everything else.  

You're at that six month period when shock gives way to reality and it can be hard hitting, although that's a rough estimate for when it hits.  I hope you'll continue to come here and post, it does help to know you're heard and understood, that your feelings are valid, that you're not alone in this.

[Marcel]

Thanks very much for the replies. Of course there's more than one issue here. Not only that my soulmate was taken away from me. But the way doctors, friends and familiy failed her sometimes makes me so angry. She had a big circle of friends and a large family and the sicker she got the more everybody withdrew from her.
My own experience with the medical profession has not been different. I've never had a doctor who could help me with any of the serious issues. The increasing paralysis of my legs, my tinnitus, my wrist issues. It seems as if doctors have their favorites, like cancer, rheumatism, aids, heart conditions an anything beyond that is dismissed. It's too time consuming and expensive to dig into.
Not knowing what it really was is frustrating. Having her familiy blaming me and my daughter for letting her go while they hardly ever visited her and never saw her screaming the night away in pain is not helping either.
It's still a rollercoaster between disbelief, grief, anger and despair. I know it's supposed to get better. I just hope it really is.

 

P.S.: My stepdaughter didn't really let her go, but she also saw it coming. She actually moved out weeks before because she couldn't bear to see her mother like that and hear her scream in pain. But then her familiy must have seen it coming too. She actually asked her father for his shotgun at one point.

[Zoe jane]

I feel your pain Marcel losing my husband of 23years just 8weeks ago. He was porley and totally left without support & care. He was one to not be made a fuss of and would battle on he worked the same job for 23years was the Manager when he was off sick he was bullied to return or resign. He was dismissed without notice. Family did not understand how sick he was so just turned the other way. He had me and his children now his family turned there back on me I guess they want someone to blame. Think maybe he could have been saved if had proper care maybe they could made his last months better if they would have aknowledge how porley he was. I asked the doctors in Intesive care would he have survived if I'd come sooner. They said he was very sick and meds he was taking created other health issues lead to tragic death. The doctors said he would never left hospital getting there sooner would just prolong same ending. But who knows?A part of myself died that day too. He passed dat before his 41st. My sadness is at a high at moment I was totally Numb to start. Now the reality is sinking in I just feel very much like a robot every day. Get up go to work sit and relive what happened try sleep few hours then next day is here again. I feel alone. I tell myself your doing ok your going to work your put on a brave face there's people worse off than yourself so day at a time so just carry on. Others don't understand how I feel or why I get upset over least thing. So I'm doing ok. I tell myself. Very heartbreaking to hear about your poor wife suffering alone. No one should have to suffer not get the help, care they need. Glad yr step daughter giving you strength to carry on each day.I found just coming on here now & then just gives me little relief to get out my feelings so I'm not bottling it up each day.Just getting a response back to me is comforting knowing someone 'is listening. Thinking of you. 

[KMB]

Marcel,   It must have been devastating for you and your stepdaughter to witness the pain your wife was in, You feel helpless and hopeless. A vicious cycle of her physical pain and your emotional pain. I'm sorry you had to go through that. Her family blaming you is just an excuse. Their own cover up for their guilt in not being there and offering whatever assistance they could have for her. They should be with you and your daughter now, offering support and a listening ear.

It is so unfortunate, but a reality, that certain people are unable to handle sickness and possible end of life. They don't want to acknowledge that these situations do happen. No one in this life is going to be immune to the loss of a loved one.People don't want to think too deeply about mortality,  thinking that it is never going to affect them. Sometimes I think that those who choose to not be around the sick and dying don't want it to rub off on them. They treat it like a curse.But, also, they don't know how to react, respond, they are uncomfortable .Hang in there, Marcel. 

[KMB]

Zoe jane---We are listening. We feel each other's pain, have the same feelings and thoughts. So many things are triggers. We are so emotionally strung out that the smallest, petty thing is overwhelming. We have to act brave and put on the facade that we are ok, normal, in public. We are far from it. We are shattered on the inside, where no one can see.

[ModHerc]

Marcel,

You wife's situation and passing are tragic beyond words.  I am so sorry for you and your daughter, both for the loss, and the torment and lack of medical treatment leading up to it.  Most of my experiences with the medical community were fairly positive, but I do know the torment of receiving inadequate care as well.  A hospital administered a drug to my wife that she was extremely allergic to, and no support personnel were present.  She went into severe anaphylactic shock, resulting in her airway closing and her being unable to breathe.  In order to get her care, I had to physically stop a nurse, blocking her path with my body, and holding her by the shoulder while I explained the situation.

I also had the head of the endocrinology department administer to much insulin, which sent my wife into a severe low blood sugar,and resultant insulin coma.  She was in the hospital at the time so they were able to quickly give her a high sugar IV to offset it.  The reason the head of the department that deals with diabetes gave too much insulin was because she said you have to offset the carbs in skinless unbreaded chicken.  I actually force an apology from her after I pulled up the hospitals own nutritional website where it showed there are 0 carbs in chicken.

Most of my wife's issues were common situations, diabetes, kidney failure, heart problems, and the related issues associated with all three of those situations.  I know that we got lucky that the care was as good as it was.  I am so sorry your wife had something that the doctors did not invest the proper time and effort into diagnosing and treating.  The drive you had to take must have been absolutely horrifying.  I am so sorry for that, and view it as a mercy, essentially the same as choosing to turn off life support in cases where it is only prolonging the patients suffering.

There are so many issues you have brought up that I know are harmful to you.  You own health concerns and lack of adequate medical care.  Her family not supporting you now, or indeed supporting both of you when she was here.  I have daughters as well, and know that watching them go through this trauma is devastating on top of our already profound loss.  I hope you are taking as good care of yourself as possible.  We are here for you, to listen, understand, and share this burden with you.  Hoping you find some peace and comfort,

Herc

[KayC]

Marcel,

I am sorry for the experience you encountered with medical "help".  My husband died of a heart attack that never should have gotten that far had his doctor dealt with him as he should have.  I had audience with this doctor after his death and made plea with him that NO ONE else die needlessly as my husband and another man did because he did not refer them to a cardiologist, because their complaints and symptoms fell on deaf ears.  I know for every bad egg there are good ones, it sounds like we got the wrong luck of the draw.

This is hard enough as it is, but to know it was not handled right makes it all the more to deal with.

[Francine]

 

Marcel,

I am so very sorry for you; I can feel the pain in your post and how devastating you must be.  It is so evident that you loved her immensely.  She must have been in excruciating pain and no one should be made to endure such pain.  Her beautiful soul will never be forgotten.  Never forget the loved you shared; and the memories you made together even though you had a few years together.  A few years to some are more than a lifetime to others.

23 hours ago, Marcel said:

I had to promise her a long time before, that when she couldn't take it anymore, I would let her go.

 

You don't realize what an amazing promise to make and I know how hard it was for you.  I commend you.  I hope you find comfort in knowing she is no longer in any pain and that has to give you a little comfort.   What we have once enjoyed we can never lose...All that we love deeply becomes a part of us.  The struggle you're in today is developing the strength you will need for tomorrow; know that you will survive and you will find purpose in all the chaos.  The task ahead of you is never greater than the strength within you and you never know how strong you are until being strong is the only choice you have. We don't know why good people must suffer, and maybe it's not for us to know; however, God has a reason for allowing things to happen.  We may never understand HIS wisdom, but we simply have to trust HIS will. 

 

On 3/12/2017 at 3:04 PM, Marcel said:

I'm living in our house with my stepdaughter, and she's the main reason I didn't follow my wife right away. We support each other and I also have support from my parents and my best friend.

I'm glad you have a support system in the form of your stepdaughter and parents.  Because if them, may you laugh a little harder; cry a little less, and smile a lot more.   I hope you continue to post.  We are all on this journey together and not afraid to share our stories, give our comfort and support.  May God give you the strength we all need to help us all get through this difficult time.

 

 

 

[Marcel]

Thanks all for the thoughtful replies. I know, none of you can answer all the questions I ask myself, but it's good to be able to share what I feel with people who understand because you have similar feelings and similar questions.

22 hours ago, Francine said:

You don't realize what an amazing promise to make and I know how hard it was for you.  I commend you.

Making that promise was extremly hard. Keeping it was even harder.
I never wanted her to do it. I would have taken care of her no matter what, but I had to respect her wishes. I wouldn't want to be a nursing case either. Just lying there, suffering with no chance of relief and see the ones I love suffer, too.
It was hard talking about it again and again for two years. It was almost bizarre to help her finding a method that was safe and painless. But I had to keep her from trying anything real stupid like cutting her wrists, which never works and only causes more pain and suffering and probably a one way ticket into a mental institution.
I even had to help her with the preparations but the only thing I really blame myself for is that I wasn't with her until the end, that she had to make the last step all by herself.
But it wasn't possible. I don't know if I would have been able to deal with the situation then and the police would have asked a lot more questions. I could have been charged with assist to suicide and even go to prison and then our daughter would have been completely alone.

Still it's a crying shame that someone who was always there for everybody, who cherished nothing more than family, friends and good company, had to spent her final moments alone. I so wish I knew what her last thoughts were.

 

[fzald]

Marcel,

Your story breaks my heart. When someone is in so much pain that they feel the only way to relieve it is to take their life, that in and of itself is pure tragedy. Many of us here have felt that same way about our emotional pain, it seems to disable us as much as a physical ailment, and it is hard to ever see any way of it getting better.

It is too bad that we have built such a negative attitude towards assisted suicide of people in immense pain. It's a debate that seems to continue to go on and on. Interestingly, even with all the animal rights we have, we still get to decide if our pets are suffering too greatly and end their lives humanely. I'm not sure why we don't feel it's OK for a human to make that decision of their own free will when their quality of life has deteriorated so significantly with no chance to recover.

I think in some parts of the world assisted suicide is perfectly legal, and even is here in some parts of the states. But I know the attitudes surrounding it are very negative, people like to equate it to murder and even want it punished as such. But to be honest, we are privileged as humans to be allowed to make many decisions on our own, we give so much value to human autonomy, we punish anyone who tries actively to take away someone's rights without due process...but when it comes to when to end your life, when your suffering has become great enough that you can't go on, apparently that is one decision people aren't allowed to make. 

My girlfriend used to discuss assisted suicide with me, and we made a promise to each other, very much like you did, that if either of us were ever in a state where quality of life was gone and would never come back but we were still alive, we would "help" each other if we needed to. 

I will never know what her quality of life would have been. She passed out from a brain hemorrhage, but never awoke. Had she woken up, she could have been anywhere from vegetative to perfectly normal. I'll never know. Sometimes I try to assume she would have been vegetative, so that I can feel less guilt about her passing because it's what she would have wanted. But I also think that maybe she could have come back normal. I'll never know. Nobody will ever know exactly what would have happened had she survived. 

But I have felt suicidal many times since her passing. The meaning of my own life has been sucked away. The emotional pain is as paralyzing as physical pain. Maybe even more, because even if you're in physical pain, comfort of loved ones near you can make a difference. I have nothing left to take comfort in. It's like floating in outer space with no reference point and no way to grab on to anything, but being immortal. Just floating and floating, hoping to die, waiting for something that will not happen for an eternity.

I know how hard it is to know that you had to accept the loss and that she chose to leave. She had to be in the worst pain imaginable in order to feel this was her only way out. I can only imagine what you must have been feeling when you left her for the last time, knowing she was going to take her life. I had the small, small gift of not knowing it was the last time I would see my girl when I did, except i did have premonitions I've talked about on here that made me believe I COULD lose her (but I ignored them). I wish I had had the chance to say last words, to say I love you one more time, even knowing she was dying but still awake would have been a gift. There are so many unspoken things between us, so many broken dreams and lost futures, so many things I want to say to her that I will never get to.

It's hard. It's extremely hard. It doesn't get "better". It gets manageable, some say, but it's never "OK". Nobody should die young. Nobody should be plagued with medical issues so young. People should be given the chance to live to old age. Everyone deserves that chance. Why some people have to be afflicted with medical issues so horrifying and fatal so young is beyond me. 

[Francine]

1 hour ago, Marcel said:

Still it's a crying shame that someone who was always there for everybody, who cherished nothing more than family, friends and good company, had to spent her final moments alone. I so wish I knew what her last thoughts were.

I believe God sends angels in our lives to guide us, love us and protect us.  We don't expect to see them with wings or halo flying above their heads.  They come in disguise and if we are lucky, we call them our wives or our husbands.   Your angel is still with you and the only reason you just can't see her is because she has been transformed into spirit form.

May God give you for every storm, a rainbow; for every tear, a smile; for every care a promise; and a blessing for all your troubles.   I pray God's love peace and strength be with you always.

[KayC]

I guess this is why Oregon has "Death with Dignity" (you have to be terminal), they don't have to go through it alone.

[Marcel]

There is a possibility to have a doctor assist you and to have your family around you in some countries. We would have gone there but even there you need a diagnosis of a terminal illness.
My wife never got a proper diagnosis, we never knew what exactly caused her problems. Just guesses we couldn't prove.
It seems bitter but she envied people with cancer. It's a horrible desease but doctors know what it is, they know what to do and it either works or it doesn't. But without an answer and without a treatment plan there's no hope at all.
And as most people think that doctors know everything, friends and familiy didn't believe she was seriously ill. They thought she made a big fuss over nothing. Even her father was that way until it got worse and worse and he realized that things were really bad.
Of course everytime someone visited or we visited people she pulled herself together because she wanted to enjoy the company and not unload her burdon on others. And when she started to feel bad again, we left early so noone witnessed her worst moments, except her daughter and me.
But during the last two years hardly anyone came to visit her anyway.

 

[KMB]

I am so sorry, Marcel. This world can be so unfair with its rules /regulations. Having society determine what is right or wrong for an individual.

I'm sorry that hardly anyone came to visit you and your wife the past couple of years.

My own husband talked of suicide a few times. He was a believer of quality of life. When you don't have much left, he figured you should have the right to end it. He had just brought it up again 2 or 3 weeks before he passed. Even knew which gun he was going to use. I kept an eye on that gun and him. He could barely walk, had to sit up to get what little sleep he could manage. Was reduced to *adult* diapers. My heart was constantly crying for him. This once strong, active man who accomplished so much in his life. At the end, his heart gave out.