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Started by Pooka
06 Sep 2012, 12:32 AM

Hi, I wanted to share this. I am having a hard time with something, and I pray for insight. My husband's dr and we decided quality over quanity of life. I really spoke up on the day the decision was made because I could see the devastating affect the chemo was taking on my husband. My husband is a fighter! He is young and wants so desperately to live. He was place on Hospice in July. Since then, he started back eating. He thought he was gaining weight, only to gain a pound and a half in one month, but it was mainly fluid. His ankles are huge. He was taking megace. He has good days and bad days. He has since stop walking on his walker and is now confined to a wheelchair.

My guilt is that...could there have been another medicine? Did the dr. place him on hospice to early. He looks better, although his strength is so weak. I find myself wondering if I am causing him to suffer...watching him suffer slowly. I lost my mother over a year ago of colon cancer. She died 2 months after being place on hospice. She was older so she did not put up a fight. But my husband who is only 43...was once so vibrant, I am watching him slowly deteriorate...but his spirit is so alive. He was in denial so bad recently that we had to have a mediation with the Social Worker. He did not want to talk about it. He would not mention the C word. I know that you can't force them...but he had a terrible fall a couple of weeks ago because he refused to listen to how weak he was. He fell twice in less than 60 days.  He is sleeping more, but he musters up enough strength to entertain. Everyone tells him how good he looks. There are days I think....maybe we made a mistake. Then there are days I think...we didn't. Please someone...is there anyone that has a story similiar to mine.

People keep telling him to continue to fight...and he does, but my husband has cancer in every bone in his body. His entire spine, in his liver, lungs. So many things I can't explain. Talk to me. Thanks in advance.
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Reply by Brayden
07 Sep 2012, 3:45 AM

Hello Pooka,
Firstly I want to tell you that your response to Mirela was so good. You obviously could share honestly from your own experience.
I can just feel the tension within you as you appear to be second guessing yourself on decisions and actions taken. I can tell that your decisions were right for you and your husband, yet our human nature causes us to allow doubt to get in the way. Please assure yourself that you are most aware of what is going on and that you can justify every decision to yourself. You do not need to prove yourself to other family and friends.
You can always reflect on decisions and actions taken and wonder what if. It is those what if's that drive us crazy. They are not productive.
Please be patient with your husband if he wants to keep fighting reality but make sure that you get the necessary respite to make that happen. You may get those family members to help you get your rest.
Praying for you,
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Reply by Plum1
07 Sep 2012, 2:52 PM

Dear Pooka,
I have just read your message and want to let you know that I feel your tension and love. You point out so well that journeying with a loved one through serious illness is not simple or easy  It is so filled with emotion. As Brayden says, I believe that it is important to trust yourself, and your deepest intuition. This will be tested, but if you re-connect deep within, you will probably regain the sense of "rightness" for you and your husband even though this may not be free of emotional pain.
Your choice to go the route of Hospice was made out of love, and a desire for the wholeness of your husband. It is clear that you want what is best for him, and I am deeply touched by your loving care. Keep remembering that Hospice does not take away suffering, but it does offer a place for you and your husband to live as fully as possible surrounded by support, physical pain relief, and an opportunity for intimacy. Your husband loves life, and I can hear that you want to honour this. Where he is on his journey just now has him clinging to a hope which does not fit your perception of his reality. As you continue to love him just where he is, he may, with time, relax into an acceptance of his physical reality. Your love and prayer, I trust, will give you the strength to be there with him each moment of the way.
I concur with Brayden that it is extremely important for you to care for yourself, giving yourself respite so as to be renewed. Keep using this site for support if you wish. I will certainly keep your husband and you in my prayers.
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Reply by NatR
07 Sep 2012, 4:30 PM

Dear Pooka,

Reading your note makes me feel so much empathy for you.  You have had some good insight by Brayden and Plum1.

I cannot add more except to say that you are doing what you feel is right and it is enough.  Your husband is having trouble accepting what is happening to him.  That makes it doubly hard for you, as you watch him slowly fade, and yet try to act like he is going to be okay, expecting his body to have more strength than it does.

I hope that you can surround yourself with support, take it from anyone in your circle who can hear you, hug you, listen to you.
You are doing everything you can.  It is so hard on you to be watching this.  It is not easy to be the caregiver and support person.  No matter what others might thing, the caregiver is stressed beyond belief because you, or anyone in a similar situation cannot fix it, cannot wave a magic wand, cannot change the inevitable.

I dont know how to tell you to be strong, but you must accept what you cannot do, and accept that you ARE doing an amazing job being there for your husband.  You are his advocate, you are his love, you are his right hand.  You are doing what is best.

It just doesnt feel like you are.  I think that is why you wrote...  just so you could hear that you are doing all you can.  Plum1 has written that very well, as did Brayden.

We are listening, we are supporting, we are here when you want to write about it.
It helps just to get it out...to know that you didnt miss anything, that you are on track.

Caregiving feels differently to us all, depending on what we are going through.
Some days you feel accomplished, some days you feel happy to have given quality of life, a smile, a laugh, a hug, a peaceful day...a meal enjoyed, some great moments with friends and family...all those things make you feel...I did a good job, I can recall something good about today.  

Then, other days happen when things arent quite so perfect, or so peaceful, or so easy to take.  Those are the days that you need more support - to let you know you are heard, that you are doing the best thing you can do....just being there.

So...take breaks, take moments to refresh you...your spirit.  I get what you are feeling.  I havent lost a husband, but I have dealt with lots of days where I wanted it to end better, have more quality of life, less stress, less pain for a loved one...less questioning of myself..did I do enough, did I do the right thing...did i????
We all question ourselves...over and over..its a waste of our energy but we care so much...that we do it.

We all do this...I believe.  Its very hard to stand outside ourselves...and pat ourselves on the back for a job well done.

Your husband is so lucky to have you.  You are lucky to be with him when he needs you.  Be kind to yourself;)

Sending you thoughts of peace and a virtual hug,
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Reply by Cath1
07 Sep 2012, 8:25 PM

Dear Pooka:

The strain of your circumstances and the many demands placed upon you have taken a huge toll on you in every respect and yet very admirably you refuse to allow life’s unfairness to defeat you as you demonstrate daily your determination to make the very best of a very sad situation. I find that when I am living under extreme stress it is very difficult to maintain a positive and confident perspective, but in a life-challenging situation such as the one your husband and you find yourselves in, it is naturally very hard on you both to feel sure of your decisions.

You will feel guilt and self-doubt which I believe is almost inescapable in complex circumstances such as yours. When a loved one's life is at risk, and especially when there is no particular right or wrong answer, I believe it is very natural to question if there is anything more that could be done, should have been done, and I think it is a part of coming to terms, over time, with the reality that cannot be ignored or wished away. Denial is your husband’s present mode of coping while you are not able to live in a state of wishful thinking, yet both of you are suffering.

I must be clear with you though, there is absolutely nothing you are doing or will do in the future to add to your husband’s suffering as you, Pooka, are undoubtedly his constant consolation, his inspiration, his succour, his solace and support! Whether or not he is able to break through his wall of denial, only time will tell, but you are in every waking moment your husband’s loyal light of hope! Please never doubt these truths! It is hard to be in a position where so much is expected of you, to be that perpetual symbol of hope even when you yourself are tempted by doubts, to be the practical prop providing care and comfort even when you are feeling worn out, to be the person who walks the fine line between giving and giving up and giving again, the person who makes all the difference to a vulnerable loved one whose life is coming to a close. To your husband, you are that exceptional person, Pooka, no doubt about it!  

As much as you are patient and sensitive to the fact that your husband is lost in denial about his prognosis as he clings to his life and his love for you and his son and family, you must try to always remember to be equally sensitive and patient with yourself as you too struggle to fully accept the ultimate outcome of your husband's illness and to cope with how it affects each of your lives as individuals, your son's life, and your lives as a family. 

I understand the nagging feelings of uncertainty, fear, guilt and regret that haunt your overwhelmed spirit as I too have been plagued by such unsettling thoughts and feelings. You are simply exhausted and when one is so spent it is hard to fight off the negative little voices that burrow into our defenceless hearts and overwrought minds to infect us with doubt in our most vulnerable moments and deplete our energies and play havoc with our heightened emotions. 

Pooka, you are so tired and discouraged and yet somehow you find within you the love, the strength and the compassion to look after your husband, as he suffers without accepting that he is suffering, and you care for your son and try to prepare him for the future and try to protect him during his father's personal struggle with life and death. You reach out to others to help and console them as you did for Mirela and by sharing the wisdom and worth of your own lived experience, you are making an important difference in the lives of your husband, your son, your family and friends, and to us here in your Virtual Hospice inner circle of love and support! Thank you, Pooka for being so remarkably open and honest about what you and your family are living through!

When doubts come to call upon you and threaten your inner peace, remember how incredibly resilient and brave you are in each onerous moment as you still rise to face the morning and the challenges that each new day brings. I hope that your doubts will not keep you awake at night because you deserve to escape deep into the replenishment of sleep to rest awhile and far from your worries. Remember not what you may have done wrong or could have done differently, but focus on all the many things you have done right and remember too that everything you do comes from a sacred place in your heart that is filled with love and hope. Remember that despite how frightening and exhausting it feels to live with the facts and to wrestle with the unknown; you still faithfully get up and go every day as you do everything in your power for your husband and for your son. 

Pooka, your husband and you have had to accept and to endure more heartbreak than many people. While none of us have the power to predict when we will die, we do have some power to control how we will live when facing our own death or the death of a loved one. You are facing with endless courage a most shattering reality and reliving it daily and you don't deserve to be heartlessly ensnared by self-doubt. Allow your unquestionable devotion and love for your husband and your pure motives to put to rest your doubts and to set free your wondering heart! You inspire your husband and son, I am certain, as you inspire us all. Remember the glorious and uplifting truth about you and know you are never alone in your humanity as we all share it with you and we are ever amazed by your beautiful soul! You have been, you are now, and I believe you will continue to be the hopeful hero of your husband’s heart and the everlasting love of his life!

With affection - hugs- xo and continued prayers for your husband, you and your son

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Reply by Tian
07 Sep 2012, 8:39 PM

Dear Pooka

I think all the previous replies have been wonderfully insightful and compassionate. I can only add that doctors are doctors for a reason and furthermore hospice doctors are hospice doctors for a reason. If there was a medication or treatment that could extend your husband's life and keep him comfortable it would have been offered. Your husband's "good" days may well be due to the absence of the effects of the treatments that were used to fight the disease. It's impossible to completely avoid second guessing. Try to minimize it. 

You are taking great care of your husband. Please keep us informed if you have the opportunity.  

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