Anticipatory grief with boyfriend’s heart failure..

[Clare Frances]

Hello everyone,

I really hope this is the right forum, I don’t know where else to turn. I have been dating my boyfriend for over a year and he is the one I want to spend the rest of my life. He is 30 and I am 26 and he is in heart failure. He has a congenital heart defect that he’s battled all his life and now he is facing a valve replacement that would give him a long healthy life and he is refusing the surgery, saying he has fought long enough and he doesn’t want it. He has a deep phobia of hospitals and needles and surgery after years of open heart procedures against his will as a child— he did not have a happy home or a loving family. To him, the trauma of the surgery isn’t worth the extra time. He just wants his heart to take its course...
 

I am struggling with what to do. My heart breaks whenever I think of the day I will wake up and he will be dead. We have no timeline, he could die in 3 months, he could die in 10 years (if he is REALLY lucky.) It’s going to be a horrible slow decline, unless he has a heart attack that kills him. 
 

For those of you who have already faced the death of your true love... if you had known he was going to die when he did or that you wouldn’t die holding hands at 90 like in The Notebook, what would you have done? I want to stay with him so that I get as many precious moments as I can, because none of us have tomorrow guaranteed. The other part of me thinks that if I walk away now, I might heal faster. But either idea is unimaginable. Being without him sounds like a cruel joke that I don’t want to hear the punchline of. I can’t breathe when I think of burying him and facing the world without hearing him breathing next to me every night.

I am angry with him for this choice and I am begging God he will change his mind and fight for a life with me. I am feeling so many things, but I also can put it all aside and just be with him in the moment... especially now that he isn’t suffering from too many life altering symptoms of heart failure like exhaustion and breathlessness. Even if I left him now and found someone else to live without a chronic health condition, nothing is stopping fate from killing either of us in a car crash the next day.. life is so unpredictable.

What would you do? If you could have known you would have suffered this kind of loss? Would you have embraced every second and every moment in case it was the last? Stayed until the end for as many memories as you could hold onto? Or would you have tried to leave and move on, hopefully find someone who had a longer life expectancy? In the face of potentially months and years of living in perpetual anticipatory grief at the inevitable early death of your partner...what would you choose? 
Please help.

[jmmosley53]

Clare,

I for one would spend every second of every day being with my beloved.  I would tell him how much I love him10 times a day, take mental photographs of him, plan fun activities that we could share.

I could never have imagined the depth of pain I felt losing my love, however the idea of walking away would not have crossed my mind. 

Would I have wanted to avoid his death?  Yes, but I would not trade the love we share for anything, even knowing how painful losing him would be.

If it was me I would happily stay and give all the love I could give and hope that time changes his mind about surgery. 

However if you feel like you do not love him enough to see him through this then leave him now so he can find a new love.  Don't wait till he is at death's door to tell him you don't love him enough.

[Clare Frances]

Thank you so much for that. That’s how I feel about it too, I just want him as long as I can have him, even if it means watching him die slowly before my eyes... It’s unimaginable but walking away is even more unimaginable. I don’t think I would be able to live with myself knowing that he is out there somewhere in the world and I’m not with him.

 

I just needed to hear it from someone else who has been through it.. I needed the confirmation that I am choosing the right thing. THANK YOU ❤️ And I am so so sorry for your loss. 

[Sparky1]

My wife used to tell me that I didn't sign up for what she was going through, and that I could leave if I wanted to. I told her, it's for better or for worse. I wouldn't leave her for anything or for anyone. I loved her until her last breath and I promised her I will always love her, for eternity.

Your boyfriend needs you now more than ever, I would be by his side to support him.

[KayC]

I am so sorry, and I totally understand your anger at his choice.  I'm sure it feels he is not considering you.  For whatever his reasons, and it's hard to understand phobias unless you have them, he's made his choice, perhaps he'll change his mind, but he may not.  You have a hard choice to make.

For myself, and I can only speak for myself, no one can tell you what to do or choose, I would choose to spend every moment with him.  I would want to be by his side to comfort and strengthen him, and to share whatever time he has left with him.  I went through a cancer battle with my dog June-August 2019 and spent every moment I could with him, he was my world, all the more so since I lost my husband nearly 16 years ago.  It was one of the hardest journeys of my life, but also a very special time and I would not have changed being with him throughout it all for anything in the world.

I realize you are not married, but that is but a piece of paper for governmental purposes, when our hearts are joined, we know it.

Anticipatory Grief and Mourning
Anticipatory Grief and Mourning: Suggested Resources
Anticipatory Grief at Work

[Clare Frances]

Thank you Sparky. I think he needs me too. I sure know I need him. So sorry for your loss.

[Clare Frances]

Thank you Kay ❤️ Our hearts are sure a blessing and a curse sometimes. I’m so sorry for your losses. Thank you for your reply and the resources. I have a secret hope that we will get married before he goes  I couldn’t imagine anything more amazing than being his wife.

[KayC]

Make your wishes known to him, don't expect him to figure it out, he might think you'd prefer not to since he's not going to be around the rest of your life.  And truth be told, none of us know when we'll go, my BIL passed a few months ago, my sister (and us) always thought she'd go first.

 

[Clare Frances]

Oh we have talked about it, he knows I don’t want to go anywhere, but he is worried that the trauma will be too much for me to deal with and he doesn’t want to see me hurting. I told him just last night that I don’t want to leave, that I want as much time as I can get but that he needs to understand that sometimes I will be sad and that that needs to be okay. I’ll bring up marriage at some point, I hope he won’t think it would be a waste.

[Mark loves Sandra]

Clare,

Geez, this is not an easy question.  The engineer in me is debating the question:  If, when I met Sandra, I knew she was going to die 3 years later, would I have continued the relationship?  I think if I knew this immediately up front, say after the first date, I would choose to part ways  -- this pain is just way too much.  But that presupposes that I could have that knowledge before I fell in love with my angel.  In your case you don't have that luxury -- you're already head over heals for your boyfriend.  In this case, I doubt your heart gives you any other choice than to enjoy your time with him.  And indeed, perhaps, -- looking at the glass half full -- this could actually be something positive for your relationship -- you both will have an overwhelming incentive to not take each other, or your lives together, for granted.  You will both know that each day you wake up together is a gift to be treasured.  I know there were many times with Sandra when I, well . . . . took her for granted.  I assumed there would always be tomorrow when I could be more loving, or a tomorrow to say I'm sorry, or a tomorrow to go on a boat ride together that she wanted so much.  I loved her beyond life and was never happier than when she would drape an arm over me in bed and say "Voce e' o amor de minha vida" (You are the love of my life), but too often I also let the hassles and stresses of everyday life interfere with me being completely loving.  And my assumption that tomorrow could always be better.  If you read my original post, you know this problem was captured fully when my angel asked me to spend the night in the hospital with her and all I could think about was my contacts drying out and having to go to work in the morning.  I cheerfully said I would see her tomorrow evening and left wondering when she would finally be released.  Instead, that was the last time I saw her alive.  Turns out, there wasn't a tomorrow.

Another thought on this: back in college, I actually had a friend who ran into exactly this situation.  He had begun dating a woman he liked quite a bit, and it eventually came up that she had some form of terminal cancer, though her lifespan was unknown.  He chose to say goodbye because he imagined the pain of losing someone he was deeply in love with would be devastating.  He was not yet in love, but he could see the writing on the wall.  His girlfriend understood completely and thanked him for his honesty, and even she said she thought that letting herself fall in love might not be a good idea.  I told him I respected his decision as something only someone in his shoes could judge.  Others were harsher.

So, I think that's the crux of it:  If a person is truly in love with another, I think it's virtually impossible to discontinue the relationship based on a terminal diagnosis.  That love makes you want to be there for that other person till the bitter end -- knowing that it could be a very rough ride, particularly at the end.  My angel died quickly -- pretty much before I even had a chance to realize she was seriously sick, but there are many many others here who have been through a devastating extended illness of their loved one.  Reading their stories of cancer, Huntington's disease, stroke, etc., it seems clear that none of them would have chosen to forego the time they had with a loved one.  Had I been given the knowledge of what would happen to Sandra after I had fallen for her (which happened pretty darn quickly), well, nope, no way in the world could I walk away -- even knowing that I would ultimately end up on the brink of suicide.

So, Clare, you two are in love.  As I said, I don't think your heart will give you any choice in this matter.  I would hope that if your love is truly reciprocated, your boyfriend will decide that any agony is worth more time at your side (assuming it's with a good quality of life) and will opt for the surgery.  I know all the people on this site would gladly walk through hell to have more time with their loved one.

Now, having made the choice to seize the day and cherish every moment with your boyfriend does not mean that you two should not make practical preparations for a worst-case outcome.  It behooves the two of you to make life and financial decisions with an eye toward ensuring that you do not find yourself in a position of grieving and having to sort out all of those horrible end-of-life problems that occur when we're unprepared.

I would say "Good luck with your choice", but I doubt you really have a choice.  So I will say "Have a happy life together and best wishes for the best possible outcome."  Never forget that each day is precious.

--Mark

[Clare Frances]

Wow, Mark thank you for such a thoughtful response. I am so sorry you lost your Sandra, and I’m sorry she left you so suddenly. I agree, I don’t feel I have a choice but not in a bad way, just in a “walking slowly towards acceptance” kind of way. This is the way things are happening and I’d give anything to have as much time as possible with him. It hurts when I think that his choice to not get the surgery is somehow the same as saying that he doesn’t care if he has as much time with me as possible. I think knowing he will leave me is one of the hardest parts of his decision. It’s difficult to wrap my head around that... and not feel abandoned by his choice. Ahhh so difficult. Not difficult, just painful. It’s easy to choose to stay, doesn’t mean it’s painless.

[DMB]

First of all I cannot imagine being 30 and wanting to die when there's a surgery that can save you!  To hell with his phobia's.  How do you love someone who has a death wish?  Nope, not me.  I'd be running out of there.

Reason for me blasting this post is because you are so young, you don't see that sickness and death should be years and years for you from now.  Not now.  Now is the time for you to live.  I'm sorry he has this diagnosis, but please ask him why???   So many want to live and their treatments don't work, and there is no cure.  I truly can't wrap my head around his choice.  You need to be straight up with him.  Honey, you're going to have enough trauma in your lifetime.  If you have an out, don't have your 1st one at 26 years old.  

[Clare Frances]

I have battled drug addiction and been sober for 4years, I have dealt and overcome mental health issues since I was 11, I lost my mother 3 years ago....life follows no rules for when death, sickness, and suffering come to call. 
I don’t appreciate your response to my post. You are being condescending and shaming me and my boyfriend. I didn’t think this was a forum for giving other people grief. But thanks anyway..

Shame on you, DMB.

[DMB]

I was simply trying to give you another view. You have a choice, but apparently you are expecting certain responses to your post and not interested in mine,  and that  is fine.

This is the internet, it's not personal. 

 

[Clare Frances]

I think you’re thinking of business, business isn’t personal. This is literally the most personal forum a person could choose to post on and my post is INCREDIBLY personal. I appreciate the fact that you have a different opinion but telling me I’m in love with someone with a death wish and implying that suffering only happens when you’re older. You don’t think I’m battling that?? I posted on here because this is painful and either way I turn there is heartache. I posted expecting support, even if the posts were on the side of walking away. You can still support someone as you come at them from a different point of view. But in your own words you were “blasting” my post. 

[DMB]

With no regard to the other posters that have already lost loved ones who couldn't be saved.  You shouldn't have posted here, imo.  I quite frankly found it offensive and needed to blast.  My apology. I'm out now. Best wishes to you with whatever you do.

[Mark loves Sandra]

Clare,

I've seen DMB's other posts, and she seems to be a very caring person, and I'm certain she meant no offense.  Rather she took the time to give you a contradictory point of view that comes from a woman grieving the loss of her husband -- she's trying to spare you the same fate.  Certainly a point of view that is worth considering.

--Mark

[Clare Frances]

It seems that she did mean offense... and I didn’t think that what I was posting could possibly be offensive... I think I picked the wrong place to seek support and answers. Thank you, Mark, your responses meant a lot to me. 

And DMB, I am sorry I offended you. Would never dream of doing so.

[Kelly]

Hello everyone,

Jumping in here for a moment and taking a deep breathe. I think there has been some amazing conversation around this topic and it has been very touching for me to read. Clare it seems you had some good insights from others. Lets us all take the good intent from this flow of conversation. Clare, as you walk this journey we do have a thread on terminal illness where the type of grief one walks on that path can be shared over there. It is at https://forums.grieving.com/index.php?/forum/26-coping-with-terminal-illness-upcoming-death/.

You have some great thoughts that others on the terminal illness path could really benefit from as they walk their journey. I hope you join that discussion as well.

Kelly

 

[Gina Mahlan]

Clare,do you think your boyfriend might just be very scared to get his hopes up again, sounds like he's been through a lot and maybe just be afraid of hoping again.  Last year my partner was in long term care after a broken hip and just could not get his strength back in his legs that would allow him to come home.  I went every night to have dinner with him and stayed till the end of visiting hours.  One night we were having such a great conversation about our childhoods, it was past time for me to leave, but didn't want to stop this happy time with him.  Suddenly, his eyes rolled back in his head and he began sliding out of his wheelchair.  I quickly called for help, and by the time the nurse came to the room, he was back wondering what happened.  Just that quick he went out again and slid unto the floor.  Nurse could not find pulse, she was yelling to someone to get me out of the room, which I refused to do.  I just refused to believe this is how it all ended for us, that he would leave me on the floor of a nursing facility.  Nurse did CPR until paramedics arrived and brought him back.  Hospital said his heart had stopped a few times and he would need a pacemaker asap.  Can you imagine how I felt when he refused the surgery, saying he would take his chances.  I was shocked, then angry, for all I had just gone through and thinking I had lost him.  And here was the option the drs were recommending and he was refusing!  How could I ever think of bringing him home, when at any minute his heart might stop again?  The next morning he called me and told me he had agreed to the surgery, that he had just been afraid, that's why he refused.  It was a success, he was back at the nursing facility within 3 days.  Unfortunately, 6 weeks later, he tested positive for covid-19 at the nursing home (they knew of other residents who were positive and they were hiding it) he was back in the hospital and passed away 1 week later.  I feel I was given an extra 6 weeks with him, but after being together for 27 years, it has been very hard to adjust to a life without him.  Clare, give your boyfriend some time to think about it, be there for him, it will only reinforce to him how much you two mean to each other.  Also, ask him if the tables were turned, how would he react if you were refusing a surgery that would prolong your life.  I will keep both of you in my prayers.

[foreverhis]

9 hours ago, Clare Frances said:

What would you do? If you could have known you would have suffered this kind of loss? Would you have embraced every second and every moment in case it was the last? Stayed until the end for as many memories as you could hold onto? Or would you have tried to leave and move on, hopefully find someone who had a longer life expectancy? In the face of potentially months and years of living in perpetual anticipatory grief at the inevitable early death of your partner...what would you choose? 

Hi Clare.  I'm so sorry to hear you and he are going through this.  Of course you wish he would have the surgery and embrace the possibility of a future together.  He may yet change his mind, but it will have to be up to him.

To answer your questions:  None of us are promised long lives.  Illness strikes the healthy and unhealthy alike; accidents can happen to anyone at any time.  In a way, any time we make a leap of faith like this, it truly is a risk for love.  We jump in with our whole hearts and hope, pray, and often expect a long time together.

Even knowing I'd be where I am now, I would have jumped in without hesitation.  I would still have taken the risk because we can only experience deep love if we are willing to risk the deep pain that goes with losing it.

But I would not have traded the wonderful, loving, good, and even just day-to-day I had with my husband for anything.  Even our last 15 months when he was fighting his cancer, we were together and there were good times too.  Nothing, not even death, could truly break that thread of love.

When we'd been married about 7 years, he had a horrible bicycling accident (not his or anyone's fault).  Had he not been wearing his helmet, he would almost certainly have died.  As it was, he suffered permanent injuries that altered our lives forever.  We had some challenging times learning to adjust and adapt to a different life than what we had been living.  And still, being with him was everything.

Even so, only you can decide if it is worth the risk to you and your heart, knowing that if he does not have the surgery you will lose him like that.  Do not let anyone in your life pressure you into either staying or leaving.  It is your choice and yours alone.  I am so sorry you have to make these choices, especially at such a young age.  To me, that once in a lifetime love was and still is worth more than all the gold in the world.

[KayC]

21 hours ago, Mark loves Sandra said:

my angel asked me to spend the night in the hospital with her and all I could think about was my contacts drying out and having to go to work in the morning.  I cheerfully said I would see her tomorrow evening and left wondering when she would finally be released.  Instead, that was the last time I saw her alive.  Turns out, there wasn't a tomorrow.

That is really tough.  None of us knows the future, it'd be nice if we could have the benefit of hindsight up front.  But we don't.  Drying out contacts is a problem, it may seem small in retrospect but you weren't in retrospect and it was a real consideration.  My husband had a heart attack right after I left on my sisters' reunion!  I had no way of knowing things would go as they did or I never would have left.  But we don't live our lives expecting this will be the end of everything as we know it!  Who of us could!  That is why we have to do our best and accept that that is good enough, be patient and understanding and yes, forgiving, of ourselves for what we wish we could have done differently.  I think, what would you tell a friend going through this very thing, tell yourself that!  It helps.  We are human.

[KayC]

I don't think you posted in a "wrong place" and you are welcome to post here.  I did feel DMB's response was intended as a valid different opinion, which was asked for, but clearly when emotions are involved, as they ARE especially on a grieving site, sometimes we can't see past our raw emotion and react from that.  I've been on grief sites for 16 years (have well over 20,000 posts on my other site) and I've seen people get heated over the years, at times, when things struck them wrong.  And that's understandable considering what we're dealing with and the raw emotion involved.  We are going to look at things differently sometimes.

I know we don't have a ton of it to muster under the circumstances, but sometimes it helps to take a deep breath and give some grace to the other.  There have been some thoughtful responses here and I hope they are of help to you.  Sometimes, as my late husband would say, you listen to it all, heed what resonates, toss the rest.  And that's something only a person can decide for themselves. 

[Roxeanne]

On 4/21/2021 at 7:48 PM, Mark loves Sandra said:

If, when I met Sandra, I knew she was going to die 3 years later, would I have continued the relationship?  I think if I knew this immediately up front, say after the first date, I would choose to part ways  -- this pain is just way too much

Dear Mark are you sure of that ? Are you sure you would have giving up on 3 years of happiness with your Sandra ?

Hard pain is the terrible price we pay to have loved and been loved!

i would always choose the pain of having lost him than never having known him!

true love is so hard to find and when you find it, life become so wonderful that you unconsciously accept the risk  to lose everything and being hit in full by an unbearable sorrow

I think you know that inside you!

[Perro J]

In the philosophical realm, in my opinion, he has the right to choose as he has chosen. I haven't walked his path. He has. He is ultimately the one who gets to choose.

That doesn't mean I agree with his decision. I don't think you have to either.

You mentioned sobriety and I am familiar with that too. We think in terms of acceptance a little differently at times. One of the things that came up earlier for me was the idea of acceptance of the death of my love. I had to discern between accepting the reality of her cancer, the gravity of her illness, the finality of her death, from the idea that accepting those things somehow meant I was approving of them, declaring them somehow fair and just, or the will of God. The former are the factual things of my surroundings. I have to act in accordance with those things going forward from here even though I don't want to. The latter items, those are out to jury at best. I think it unlikely I will ever approve, agree with, or believe what happened to her was just or fair. So, in that context, I would suggest you tell him you accept his decision but you don't agree with it.

As far as leaving her - my situation had a little twist in it. She was in the USA, her family in South America. I was with her the last 2 and a half years of her life. Friends explain to me what an honor that is, and they're right - but that doesn't lessen the hurt of her loss. Almost a year ago, I explained to her - that if she felt like she wanted or needed to go home to spend time with her family, I would help make that happen. That was a heart wrenching conversation - but I knew that she didn't want to leave me - and I didn't want to leave her. Yet I also knew that she had not seen her brothers for three years - that the doctors here were pessimistic and the chemo did not seem to be helping. We both knew that her going home meant when I left to come back home, that was the last kiss, the last hug, the last touch. She needed to be home, to be with Mom and Dad. I was leaving her against my will, or at least that was the plan.

It is true that some people lose their loved ones suddenly. I imagine some of them consider my story and think "At least you had a chance to say good bye". Here is the rub. We never said good bye. We never gave up hope that a miracle would come in spite of how terrible the final days were. She died at home three days before my return flight to the USA. I remember almost nothing of that flight home. We swore to love each other "hasta el fin de nuestros caminos" and it just so happens that we did just that. I love her still.

You have your own path to follow. I accept your decision, whatever that may be. Whether or not I agree with it is irrelevant. Through addiction, you've learned a thing or two about getting back up after you've been knocked down. I wish I could tell you as an older guy that once you get through this you'll be OK and not get knocked down anymore. I'd be lying to you though. Life is still going to deal you some bad hands. Hopefully you'll get some good ones too. My love was definitely a good hand. I am glad I stayed in the game long enough to meet her.

Leaving her isn't really the words I would use to describe what I was doing. Getting her home was a better way to phrase it. In hindsight, I wish I had gotten her home earlier so she could have spent more time with her family. We made our decisions as best we could with the information we had. It still ended poorly for us. As Mark mentioned, it really isn't a choice.

I wish you the best of luck, whatever you decide. I hope he changes his mind and tries the surgery too.

[Clare Frances]

So many beautiful responses!!! You have no idea how much each of your posts sits in my heart and helps and heals. I will respond more in depth to these soon! In the meantime, so much love and peace and grace to you all. ❤️

[widower2]

 

On 4/21/2021 at 4:17 PM, DMB said:

First of all I cannot imagine being 30 and wanting to die when there's a surgery that can save you!  To hell with his phobia's.  How do you love someone who has a death wish?  Nope, not me.  I'd be running out of there.

Well then thank God she's his girlfriend and not you eh?

It's fine to offer a differing viewpoint...mine is somewhat different as well in fact...but that doesn't excuse doing it in an obnoxious and insensitive way. "To hell with his phobias?" Really? What a ridiculous response. This isn't simply a "phobia." Did you even bother to read the OP? 

I don't get or agree with his decision either to say the least, but live through what he's lived through and then get back to us. 

 

On 4/21/2021 at 5:20 PM, DMB said:

With no regard to the other posters that have already lost loved ones who couldn't be saved.  You shouldn't have posted here, imo.  I quite frankly found it offensive and needed to blast.  My apology. I'm out now. Best wishes to you with whatever you do.

How ironic. I found your posts offensive (and I'm hard to offend) but I'm glad you're "out." The kindest word I can think of to suggest someone shouldn't have posted here is asinine. I'm sorry for whatever loss(es) you've had, but it doesn't excuse your attitude here at all. I suggest you think more before you speak. 

Moving on... 

That all said, Clare I'm sorry for what you're dealing with, but despite the poor way DMB went about it, there is a point there: your boyfriend has a way to possibly save himself and he's declining. For those of us who had no such option, to decline is incomprehensible, even offensive. The reason (childhood trauma) is a powerful one, I get that, and this is just "IMO" but personally I wouldn't feel like "OK well it's up to you I'll respect whatever you do" may be the answer. Just maybe the "nice" way isn't the best way here (and I emphasize maybe). Maybe a little "tough love" is in order...reminding him that you aren't going anywhere and how he's prepared to put you through hell on Earth in losing you, never mind the the fact of oh btw him dying too, which can't be a treat for him either. Is he really that prepared to embrace and choose death? I can appreciate that the idea of going through another operation is nightmarish for him to say the least, but when you weigh DYING soon vs possibly (likely?) living a long and full life.....one you two can live together and have SO many happy moments and days and weeks and years!...isn't it worth it to face those demons? Isn't it worth it? Aren't you and he and your relationship worth it? 

Just some thoughts.  

 

 

[Roxeanne]

On 4/22/2021 at 1:48 AM, foreverhis said:

None of us are promised long lives.  Illness strikes the healthy and unhealthy alike; accidents can happen to anyone at any time.  In a way, any time we make a leap of faith like this, it truly is a risk for love.  We jump in with our whole hearts and hope, pray, and often expect a long time together.

Even knowing I'd be where I am now, I would have jumped in without hesitation.  I would still have taken the risk because we can only experience deep love if we are willing to risk the deep pain that goes with losing it.

But I would not have traded the wonderful, loving, good, and even just day-to-day I had with my husband for anything.  Even our last 15 months when he was fighting his cancer, we were together and there were good times too.  Nothing, not even death, could truly break that thread of love.

Very well said foreverhis! I'm feeling the same...as you i faced my bad moments  with my loved one smiling with tenderness and even fun!

I can't help but miss him and that wonderful connection between us ...forever!

[KayC]

This has all required some introspection and deep thought.  There's no "one way" to respond.  I would choose being with George in a heartbeat, even knowing what I had to face.  But it'd also be hard if he chose not to fight death and stay with me if he could.  But again, that's not something anyone can speak for someone else.  As widower said, maybe it requires some tough love or a sort.  I know I had to give George tough love at one point, my sister asked (after he died) if I regretted it.  Hell no!  That was the neat thing about our relationship, we always knew where the other was coming from and EVERYTHING we said and did was based from love!  I said what he needed to hear, just as he would have me.

[chincube]

I know for people who loves the one who's sick, a choice of giving up would make us angry. However, everyone is different, and with all the traumas and fights he had faced even long before, the choice might go way back. But then, this really depends on who's looking at this choice. My boyfriend died suddenly, if he'd had given the chance but gave up, I'd have been angry too.

@Clare Frances I am sorry you are going through this. Many people had written a lot of insights already, so I don't repeat all those about how I'd love to have more time with my boyfriend.

I tried to imagine stepping into your shoes and imagining the 2 scenarios. Frankly, I cannot say which one would be worse, to stay or to walk away now. If it's me, even if I walk away and end the relationship, I think even if it's 10 years later that he passes, it wouldn't hurt any less - probably just more complicated and disenfranchised. True grief is the hardest thing and I wouldn't wish on anyone, but I guess grieving for someone who once was close yet "not yours to grief about" anymore isn't any easier as well. Especially with the situation that you know about his condition, and you choose to walk away. It would be more complicated than grieving someone you love, there could be so many more emotions....

Just my 2 cents.... Again I am really sorry, because it must be a lot of anxiety you're going through regardless of all the choices by both of you. Take care of yourself too.

[foreverhis]

15 hours ago, widower2 said:

That all said, Clare I'm sorry for what you're dealing with, but despite the poor way DMB went about it, there is a point there: your boyfriend has a way to possibly save himself and he's declining. For those of us who had no such option, to decline is incomprehensible, even offensive.

Absolutely!  You stated that really well.  I was trying to come up with a reply that was somewhere between DMB's off-the-cuff response that seemed, to me at least, overly harsh and being completely passive.

I don't find Clare's asking about it offensive, but like you, I find her boyfriend's decision incomprehensible and offensive, for me especially to my husband's memory.  Too right that all of us here would have given anything, absolutely anything, to have that option.  And so for someone, especially so young, to decide he's had enough and would rather die than have a good chance of living, well, it offends and angers me. 

But I can't be angry at Clare for agonizing over this and asking for help.  She does not deserve that. 

@Clare Frances Honestly, I think you need to decide how you're going to deal with your love.  IMO, you do need to give him a little "tough love" and tell him that you do not agree with his decision, that you never will, that you are angry, and that it is causing you extreme pain.  How he responds to that may help you decide whether to stay or leave.  Does he care enough about you to risk having surgery that would likely allow you to live a happy life together?  It's natural that he'd be thinking of himself, but with a couple, any couple, it's no longer only all about one person because what we do affects the other deeply.  Is he as committed to you as you are to him?  Does it matter to him that as he declines and you stayed, you'd end up his caretaker at a young age?  Is he willing to jump in with his whole heart, literally and figuratively in his case? 

Please ask yourself these questions and then ask him.  Do it when you can both be calm and if it gets too intense, then agree to step back for a bit and try again later.

I truly am sorry you have to go through this.

[Sparky1]

I've been reading these posts and some very good advice has been given. I just want to relate the situation I had with my wife. When we met, my wife laid it out on the line from the beginning, she didn't have any tricks up her sleeve. She had MS and had been battling it for about 7 years when we met. It took me a while to understand it, but I was in love with her and accepted her warts and all. We had 18 years together and she NEVER gave in to the disease. She was tough mentally and physically and that is one of the traits I loved about her.

Unfortunately, and she used to tell me all the time, she wouldn't die of MS, but from complications of MS.  Too many steroid infusions probably did a number on her adrenal glands. In the beginning I promised her that I would never leave her and I was there until she went with God. I would give almost anything to have her back and I don't regret being with her.  Yes, we had rough times but we both weathered those rough storms because deep down we loved each other more than anything.

Clare, I pray that things go well for both of you. Love overcomes everything.

 

[TLN]

On 4/21/2021 at 12:48 PM, Mark loves Sandra said:

I know all the people on this site would gladly walk through hell to have more time with their loved one.

Indeed.

On 4/22/2021 at 10:51 AM, KayC said:

Sometimes, as my late husband would say, you listen to it all, heed what resonates, toss the rest. 

So true of advice. Thank you.

On 4/22/2021 at 4:35 PM, Roxeanne said:

...true love is so hard to find and when you find it, life become so wonderful that you unconsciously accept the risk  to lose everything and being hit in full by an unbearable sorrow...

That is a beautiful way to speak of true love! I do hope I am lucky enough to find it someday--soon. Be well, @TLN

[Seabrook]

I think instead of giving you "advice", the best thing I can do is tell you what I did in a similar situation. I met my husband in March of 2005. I had already known him online. I knew that he had a congenital heart defect. I knew all the medical hell he had faced. And I knew that he would never live a long life. But he was 27 at the time, and all that seemed very far in the future.
He died 3 days ago. In my arms. His body had finally had enough. He had had enough. He could have gone through the trauma of being assessed for a heart transplant. But he did not want that. I supported him fully. I supported him in all major medical choices.
Even though i went through plenty of medical stuff with him, I'd say my anticipatory grief didn't really start till last September when things really started getting bad.
I was with him every step of the way, taking care of him as best I could. Staying with him 24/7 in the hospital.
If i had known at the start, how it would end I would not change a thing. He was my love, nothing changed that, nothing ever will.

[Roxeanne]

Seabrook he had you and i'm sure  he was very happy for that!

2 hours ago, Seabrook said:

If i had known at the start, how it would end I would not change a thing. He was my love, nothing changed that, nothing ever will

So tender that we would never given up on our love !

Not even when we knew that the hell without him is just around the corner...

This is the strengh of our love...

 

[TLN]

3 hours ago, Roxeanne said:

Not even when we knew that the hell without him is just around the corner...

This is the strengh of our love.

Well said, @Roxeanne. Indeed. @TLN.

[KayC]

On 4/28/2021 at 8:21 AM, Seabrook said:

I think instead of giving you "advice", the best thing I can do is tell you what I did in a similar situation. I met my husband in March of 2005. I had already known him online. I knew that he had a congenital heart defect. I knew all the medical hell he had faced. And I knew that he would never live a long life. But he was 27 at the time, and all that seemed very far in the future.
He died 3 days ago. In my arms. His body had finally had enough. He had had enough. He could have gone through the trauma of being assessed for a heart transplant. But he did not want that. I supported him fully. I supported him in all major medical choices.
Even though i went through plenty of medical stuff with him, I'd say my anticipatory grief didn't really start till last September when things really started getting bad.
I was with him every step of the way, taking care of him as best I could. Staying with him 24/7 in the hospital.
If i had known at the start, how it would end I would not change a thing. He was my love, nothing changed that, nothing ever will.

That is so beautiful, and yet also so sorrowful.  You have no regrets and that is good.  I am so sorry that you too have suffered such loss.  For the right person, I would give my all...my George was "my person."  He passed five days after his 51st birthday, we didn't meet until our mid-40s so we didn't get as long together as you, but that time with him was everything in the world to me, he was my soul mate, best friend, lover, everything to me.

I want to share an article I wrote of the things I've found helpful over the years, in the hopes something will be of help to you either now or on down the road.

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 or www.crisis textline.org or US and Canada: text 741741 UK: text 85258 | Ireland: text 50808
• 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.