When to Leave it Alone

I watch my husband of twenty-three years leave for his visit with his doctor and have a flashback of letting go of my five-year old son’s hand so he can go into the kindergarten class with the other kids. It is the progression of life and something I must accept.

I have railed against this news that my husband in the fourth and final stages of COPD and has been given a life expectancy of one to three years.  I am the problem solver, the fixer. I don’t easily take to statements of, “it can’t be done, it can’t not be fixed.”  Why not?  Why can’t it be done another way or could we try it this way?  This time it seems the answer is final.  No, it will not get any better, only worse.  No, there is nothing he or I or the doctors can do to repair the damage to his lungs.  It will progress and that is that.

For the first time since I’ve known him, my husband wants to do this alone.  It is his visit with the doctor, his instructions on how to manage the disease … his dying.  Always, before this, he wanted me to go to the doctor with him, to ask questions he might forget to ask or to remember the answers.  This time it is too personal.  He wants to face it alone. I will, of course, respect his decision.  I did not at first.  While I was still in denial I demanded answers from him and from his doctor and a second doctor.  I have to know details when I am facing an enemy.  I want to know everything there is to know and I research every aspect as if knowing about it gives me control over it.  He knows as much as he wants to know.

I steal glances at him as he sits in his chair and watches television.  I look for some sign of panic, hope, something I can latch onto and be a part of, but I see nothing.  Can I do anything, I ask?  Maybe a cup of coffee he’ll respond or a sandwich.  I try to reverse our roles and wonder what I would be feeling, what I would want and I can’t wrap my mind around him not wanting anything.  I don’t know what my reaction would be but I do recognize this.  He has accepted that he has this much time left and is coming to terms with it in his own way. 

I know that using the oxygen helps him to breath and puts less stress on his heart and so I would remind him of this when he wasn’t using it. One look told me not to do that again.  He has so little control left, the last thing he needs is me choosing for him how he manages or chooses not to manage this disease. 

I need to talk to him, my best friend, the one I have turned to these past two decades plus, whenever I needed anything.  He has been with me through so many tragedies and so many joyful events.  We have shared everything.  When his children were clearly becoming estranged from him from the seeds of bitterness his ex-wife planted in their souls, I fought to bring them back together and when that failed I would try to create diversions as birthdays and Father’s Days would pass with no phone call, no cards.  When he had his heart attack, I beat the ambulance to the hospital and slept in a chair beside his bed for three days.  Where else would I be?  We are known as a couple.  People know if they are dealing with one, they are dealing with both and that neither will make any important decisions without first consulting the other.  It is simple respect and it is the result of becoming one which we vowed to do in our wedding ceremony and what we have done over the years.

Now, all he will allow me to do is promise that his wishes to have his body cremated will be honored.  I even know which crematory he does not want handling this as they are known for their careless practices of cremating as many bodies as possible at once to cut their costs and he doesn’t want his ashes mixed with others, to the degree this is possible because he says they all do it, some are just worse then others.  He does not want a funeral service.  He believes no one would come.  I ask if I can at least have a celebration of his life, for those of us who are left behind, so that we can try to process his death and he agrees, as long as I keep it simple.  These discussions are necessary and I understand that and pay close attention but all the while I am screaming inside.

I don’t know how to do this.  I don’t want to do this.  How am I to do this, alone?  These thoughts keep running through my mind like a broken record and I feel selfish for thinking them.  I understand on a logical level I am not selfish and that I need to find someone to talk with about these feelings.  I’ve even researched it on line, as I do every other thing in my life.  Someone must have written something about this, there must be directions on how one proceeds.  But no, there is a lot about the grieving process but not much about splitting yourself in half and watching that half die.  There is much about the care taking of a terminal loved one and caution to take time for yourself and your needs. 

We even went through this together as we helped to care for my ex-husband, the father of my daughter, as he died of cancer.  They had become friends and built the privacy fence that surrounds our yard together, arguing the entire time about how it should be done.  They spoke on the phone for hours when my ex was drunk and no one else wanted to listen to him ramble on about his life.  I was with him when he died and my husband and I helped with the cleaning of his body so that my daughter and granddaughter could see him before the funeral home people took his body from his home.  We have gone through the deaths of each of our mothers, his father and our best friend, together. 

Together.  But this time, I have to do it alone.  I have to leave it alone, his dying is something he wants … seems to need … to do alone.

I’ve had a couple of people say that in a way we are blessed to know this is coming and to have this time to prepare.  In some cases I would agree.  If a loved one is taken away suddenly and you have had no time to tell them how much you love them, if, God forbid, your last words spoken were those of anger, if you had no idea what their wishes were for the handling of their final arrangements, their funeral.  But none of this is the case.  There are only these numbers hanging out there – one to three years depending on how he manages his care, depending on whether or not his heart gives out first. 

He has no “bucket list”, I’ve asked, believe me.  His physical and psychiatric health is not at all conducive to travel.  I’m pretty sure he would enjoy it if his kids would visit but he has told each of them what the doctor says and so far there are no plans for any changes in the way their relationship has been handled.  There have been occasional phone calls through the years and even a few cards sent and I suppose that is the way it will continue.  My son is probably closer to him than any other person on earth, other than the obvious.  He is furious at the situation and somewhat in denial but they have both a spoken and an unspoken bond that says love and respect. No, that is wrong.  Our six year old granddaughter is closer to him.  She broke through that iron wall and he is her PaPa.  He had been a little less involved in interacting with her before the doctor announced his diagnosis but that was because of his declining health.  He still slips her a piece of chocolate before dinner and exclaims over the latest refrigerator art she proudly brings to him.  They exchanges “loves” a hug and a kiss when she arrives for a visit and when she leaves and she spontaneously leaves what we are doing and gives him loves throughout her visit but they don’t play now.

I am trying to develop some sort of perspective in dealing with all of this, some formula, maybe a guide book.  I try to remind myself that I have the right to feel sad and afraid and even angry.  For the first time in my life with him, I do not know what he is feeling and he is not sharing, not with me anyway.  I want to ask but it is an intrusion.  I wait fro him to say, “We need to talk.”  So far, it has not come.  I guess for now, it is simply knowing when to leave it alone..

I just want to add that I do not write of this for statements of sympathy. I know the love that is here. If there are any suggestions I welcome them. If there are links to similar stories or articles on the net you feel might be helpful, I certainly welcome those too.

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Comments 21 comments

RTalloni profile image

RTalloni 5 years ago from the short journey

It is very difficult to know how best to reply to such a personal hub, but I'm glad you are writing about your circumstances. I relate to your practical, matter-of-fact approach (perhaps because we have similar personalities) yet I know you suffer more than you communicate. I will stop here pray for you and all your family.


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

Prayer is welcome above all, thank-you RTalloni.


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

I did just find a site that seems like it's going to be helpful. It is for those with COPD and their care takers. I'm reading the forums and realize there are things I don;t know yet about my husband's choices. Many with COPD are hospitalized and put on a ventilator and he had told me a couple of weeks ago he didn't wan that, but I need to be sure he and I are talking about a temporary situation to get him over a hump or not at all. Here is a link to the site if it can be of help to anyone else.

http://www.copd-international.com/Caregivers/


stars439 profile image

stars439 5 years ago from Louisiana, The Magnolia and Pelican State.

Dear Phoenix : It is never too late for hope. Doctors know a lot, but he still belongs to God, and I for one will pray for him,and to ask our Lord to give him back his life. If it is possible, try to go on normally with your life activities , and not worry so much because he is in God's hands precious heart. God Bless You.


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

Thank you Lee, that means a lot to me. We will try to go on as normally as possible while doing what the doctors say.


HattieMattieMae profile image

HattieMattieMae 5 years ago from Limburg, Netherlands

Oh my prayers are with you, and let's hope maybe God does have an alternative plan. Sending lots of prayers and healing your way! :)


SomewayOuttaHere profile image

SomewayOuttaHere 5 years ago from TheGreatGigInTheSky

..hmmmm...my thoughts...right or wrong...just my thoughts...he's accepted where life is moving....he doesn't have much to say to you about it and may never want to speak to you, his love, about 'those thoughts'; he may just hang onto them...live in the moment together...there is no right or wrong answer for how he wants to move forward with this next stage of his life...just be there with him - in tune with him...it's hard...just be...1 to 3 years is a long time and it's a short time...maybe, another thought...you'll start to move with him down this next road - his road - no questions need to be asked because there are no answers....hand in hand...heart to heart..soul to soul...no need to speak - it's in your eyes ...i've more to say - but it'll turn into a hub...just be...just live in the moment - together...and don't look into the future - just look at today and enjoy your time....this most initimate time

Peace.........


K. Burns Darling profile image

K. Burns Darling 5 years ago from Orange County, California

Oh no.... I've been away for the last week or so with the flu....My heart is breaking for you, but I know you don't want sympathy right now....You're probably right on this too, so only advice, (humble as it may be, I am no expert, but you know a lot of my own story and I do have some experience here). First of all, men and women as you know are worlds apart in the thought process department. Women as caregivers, mothers, wives, have the need to do something about everything, we solve the problems, we protect the ones we love, we need action, and the hardest part for us is to just do nothing, and he is probably trying to digest the news, and at the same time trying to protect you from some of the ugliness that comes with this news. Let him figure out in his head first what it all means to him, you two are a unified front with a long history of doing battle with life shoulder to shoulder, he won't face this battle without his wingman, but let him figure out what it means to him first, I predict that he will talk to you about it, answer all your questions, fill you in on all the details, just as soon as he figures it out. After all, it is really hard to explain to someone else, even your closest friend and confidant, what you don't yet understand yourself. 1-3 years is still somewhere between 365 and 1095 days, and since the doctors are not God, they are only guesstimating, I have seen people who have gone much quicker than what any doctor ever predicted, (My own best-friend last year was given 6 months to a year and lasted a scant 57 days, while my sister's father-in-law was told 1-2 years and is now entering year #4) so make the most of every day, try not to dwell too much on what is to come, but instead take each day as it comes, as a precious gift of time. Say everything in the days ahead that you need to say to one another, no matter what it is, I have learned in my life that it is the unspoken words, the ones left unsaid, they are the ones that will haunt you when your loved one is gone. I have a lot more that I want to say right now, but will message you privately later....In the mean time, please know that you really do have not just me, but a whole community here that loves and cares for you, and that I am here, (though miles away) for you whenever and whatever you need. My thoughts and prayers are with you!

Hugs and Love

Kristen


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

@HattieMattieMae - thank you my dear, as always prayer is most appreciated. It is the number one to do on my list every day and has been so it comes easily. Prayers united are very powerful.

@ SOH - I know you are right and for the most part, at least on the surface, we seem to be doing that. There is a lady who owns an ice ream parlor/coffee shop here in town and he loves going over to visit with her. Yesterday they spent two hours talking about England and singing old English tavern songs. She has visited there three times and he lived there with his parents when his father was in the Air Force. When he came in, he looked so relaxed and the sparkle was back in his eyes. I am so thankful he has found someone who appreciates him and that he has something in common with. I think it will do him a world of good!

@Kristen - Your experience as a care taker is going to be a large help to me later on. I think that forum I found will be too as there are feelings that need to be let out that may not be understood elsewhere. I am trying to do as SOH suggested and live in the moment while also finding out what I will need to know about what to expect down the road and watch for such as keeping our granddaughter out of the house when she has things like upper respiratory virus infections. We have been her main caretakers when she can't go to school but she has another set of grandparents who love her very much so this will be manageable. I'm finding from that site that a lot of times there are many hospitalizations involved so I will try to make arrangements a head of time to have someone come in and care for our many furry friends so I won't have to be concerned about them while I stay with him. The local nurse he sees seems to have him on all of the right medications for reducing fluid, just gave him an antibiotic when she heard crackles in his chest and such. Thanks for your message, I will remember that. :)


Hyphenbird profile image

Hyphenbird 5 years ago from America-Broken But Still Beautiful

I will only say I pray for his painless and peaceful passing and your that peace that surpasses all understanding for you and all of his loved ones.


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

Aw... yes, that particular Peace has stood me well over time. Thank you for the reminder. I pray it is painless and peaceful as well. Both are very important.


epigramman profile image

epigramman 5 years ago

....well you have been a tremendous source of support, encouragement and friendship to me - and a true hub lifeline - in some small way I hope these humble words move you to know that I am here for you in spirit, love and respect!


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

I certainly appreciate that Epi and I will call on you more than once I suspect. Thank-you.


WillStarr profile image

WillStarr 5 years ago from Phoenix, Arizona

We'll pray for both of you.


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

Thank-you big brother. It is good to see you write "we" so often now. "We" is such a little word but it holds so much power and love.


suziecat7 profile image

suziecat7 5 years ago from Asheville, NC

My heart is breaking for you both. Prayers on the way for stength and peace. Hugs.


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

TY suziecat - much appreciated.


Sharyn's Slant profile image

Sharyn's Slant 5 years ago from Northeast Ohio USA

Dear Pooh,

I honestly do not have any advice to give or resources. I would just like to say that I am thinking of you and wishing you a peaceful journey. Thanks for sharing this important piece of your life. Best wishes,

Sharyn


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

Those are lovely gifts that I accept with much appreciation! :)


saddlerider1 profile image

saddlerider1 5 years ago

I couldn't have said it better than SomeWayOuttaHere, live in the moment. It's in the eyes, you both know each other so very well. There comes a time to die, we are all dying, just some of us slower than others and some with the knowledge that they are. I know when that time comes and we are told we only have so much time left, then that's when we look at our partner in life and say the gig is up, but let's not stop loving and supporting one another, let's draw closer than ever before and share the moments I have left to share with you my LOVE.

There is no doubt an assessment is calculated in his mind as it should, he knows how much time he has left and he will become reclusive at first and quiet and totally introspective, but that does not mean he has stopped loving you. He is in limbo a state of shock that he was given time to live.

It's now how he lives it, the Quality and Dignity. He now knows how much time he has to give back to life, his loved ones the people who stood by him all this time.

I to am estranged from 3 of my 4 children and it took a toll on me as well. Mostly mentally, although I'm sure inside it has weakened me physically. I know the feeling of loss and sadness from not communicating with my children, my ex as well poisoned their minds and when I divorced her she made sure I divorced my children as well and took them out of my life with hate for their daddy. You know, I write in many of my dark poems of my life experiences.

So my dear friend who has stood by me in friendship and supported in kind words so many of my scribes, I want to reach out to you right now and hug you both and look in both your eyes and say, tis life, we enjoyed it to the fullest together, we stood by one another and now it is my time to say farewell.

But he MUST take the stand of being strong for you and his grandchild and your son and his own kids no matter what, even though they are still at arms length. HE must be the strong one, sort out his affairs and leave knowing that HE was LOVED by people who count.

I know that when I am told how much time I have left, I to will do the same thing, prepare my exit and to be cremated, it's the cleanest way to go and it's the Viking/Celtic way, dust to dust ash to ash. So my dear friend, just be patient, give him all the support HE wants from you, let him know you are constantly there by his side WHEN he wants it, right now he is walking alone in his mind, it to will pass.

He needs you and wants you, never for a moment think otherwise. Together you will walk the path and just let him know to GIVE back as much of himself as he can to others right now, the LEGACY of LOVE is the best we can leave..never must we think of our situation, he knows there is no turning back now, so he MUST do the best he can to leave footprints in the sand of life, with kindness and love to everyone who comes into contact with him.

I will pray for you both, God is carrying him now, so don't worry he is in a state of Grace and all you can do and should do is respect that and be there with him right through till the end. Big Hugs to both of you from this old Saddlerider.


Poohgranma profile image

Poohgranma 5 years ago from On the edge Author

You have affirmed the absolute truth here and first, my gratitude to you for saying what needs to be said is unmeasured. You have touched my heart and my soul with your caring, truly.

So much has happened since I wrote this and all that you've said has come to pass. Gary has come to some sort of terms with his dying and we have been able to discuss not only his DNR and Last Wishes but also his wishes for the rest of our lives together.

While he chooses to do little to manage the symptoms of this killer, he takes his oxygen when he can no longer breath on his own instead of being on it 24/7, as prescribed. We went to the doctor together and discussed the details of what will happen and when he will know it is time for even more care and suggested Hospice be brought in. For almost a week, before we met with them, it was as if his stay of execution had been denied because Hospice will not come in until there is a clear six months or less life expectancy. Suddenly one to three years had gone down to six months. While the amount of care and help, for both of us is a welcomed thought, the price seemed too high to pay. We each, separately, and then together processed all of this information and got serious about filling out all of the necessary forms, updating the kids and making arrangements to get him a lift chair recliner from Hospice as he can no longer sleep comfortably lying down in our bed. We got a sofa so that I can sleep in the same room with him and he is up at night watching tv. We donated our king sized bed that had become much to empty for me. We prepared.

Then the Hospice doctor called and said he was not quite willing to begin care, given the six month rule. We were elated. It was as if the forbidden stay had now been granted and we lived for several days as if things were normal - pre-diagnosis normal. It was during this time that we realized this is how we should or could be living every day, no matter what number are thrown out there for us to digest. He even started using his oxygen more often which really helps keep more stress from his heart working overtime.

We will go back this Thursday for more tests as his doctor says there has been a marked decline in the past thirty days and she wants to repeat tests that were done originally and then a couple of months ago and she is working with Hospice to get us as much support as she can as she knows of my disabilities and the ones he has on top of the COPD. With each step, we learn something new.

I love what you said about God carrying him now and that he is in a state of grace. We both are and I will take as many days, hours, minutes and seconds as God wills but you have helped me understand that all is God's and we are only caretakers of His gifts and that includes our time here and our time to come.

Thank you my cherished friend.

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