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Reply by Cath1

28 May 2012, 4:30 AM

Dear Carrie:

It seems from your message that your husband's end may be coming very soon. You cannot in my opinion fully prepare for the reality of the experience of his death as the emotion it will bring is bound to catch you off guard.

You are amazing for having had the good sense to ask for family to surround your husband with a circle of love and care so that you can take a very necessary break at times. It is completely natural to wish to be present at the moment of your dear husband's death. I felt exactly the same way when my Mom was dying, but I had to talk to myself and talk with others to help me cope with the very real possibility that my wish may not be granted. I had no control over when my Mom was going to take her last breathe and even while I remained at her side throughout, I had a long chair I sometimes curled up on to sleep and she could well have died when I had closed my eyes for a moment. As a smoker, I sometimes went away from my Mom's bedside to go outside to have a cigarette knowing when I returned to the room one of my children may have greeted me with the news that she died. It was very hard to accept that I could not be physically present with my Mom in every moment and nor could I be emotionally present for her without the support and help of others. You must know that as long as you are doing the best you can in the circumstance, it is more than enough. You will need breaks, sleep, food, hugs, support and the knowledge that your husband is being looked after well in each moment of his preparation for passing from this life to his next life.

You cannot know exactly when the moment of death will come but the nurses and doctors do know certain signs that they may be able to share with you to help you understand the dying process. Ask questions of these professionals and if your husband has a palliative doctor or team, ask them to be there for you both. Please don't entertain or anticipate any thoughts of guilt if your husband should die when you are not present. You are there giving him 100% of your time and your love even when he is not in your physical presence and he knows this truth much more than I. You, Carrie, must never forget the truth of you and the deep love and loyalty you give to your husband. You have never wavered no matter how much your heart is breaking.

I will write more if you want me to or if you need me to tonight. I will wait until you write back and will follow your lead. In the meantime, remember always you are not alone as you go through the uncertainty. You are a fearless soul, Carrie and you are so much more resilient and braver than you now know! I am praying for your husband that he has the most peaceful ending and I am praying that your wish to be with him at the end is granted. Oh how I am wishing with all my heart that you will both feel much love and strength enveloping you.

With much affection,
-hugs- xo
Cath1

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Reply by Tian

28 May 2012, 4:52 AM

Dear Carriek

After I labored over this message I saw that Cath1 had already responded.

I'm so sorry that your husband now requires hospitalization. As for what is normal, who knows? Every individual is different, every family is different, every situation is different, this is literrally a once in a lifetime event. All the feelings you have are valid. Whatever makes you feel better is good. Whatever makes your husband feel better is good. In my experience as a palliative care ward volunteer I've observed that what makes one partner feel better usually has the same effect on the other. But on the other hand I'm not sure if your crying would make your husband feel worse. At some point, if it hasn't already happened, your husband will probably know he is dying. It shouldn't surprise him to see you crying as sick as he surely knows he is right now. Crying is a response to that actually helps ourselves in times of trouble and when would it be more appropriate than now for both you and your husband to cry?

It's great that your getting support from your husband's family. Your husband's comfort is the priority right now. In that regard, although it's understandable, I don't think it helps to ask why this is happening. It may be the hardest thing you've ever done but I think it would help if you could somehow reduce all the thoughts that are racing through your mind. Try to focus on your husbands needs. When your husband's passing is approaching the nurses should be able to observe that and be able to contact you. But don't feel guilty if it should happen when you are not there. You have seen all to well that things don't necessaily turn out as you would like.

As soon as I post this I'm probably going to think of something I should have included. But I've got to post this sometime. I'm thinking of you and your husband and kids Carrie.

Tian

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Reply by Cath1

28 May 2012, 5:54 AM

Dear Carriek:

As you see, your tag team is here for you!:-) I planned to wait until you wrote back but like Tian, I had more I wanted to say to you, Carrie, and when I read his lovely response to you it inspired me to write to you again before I go to sleep. Tian, I absolutely love the way you use valid instead of normal to describe feelings. All feelings are indeed valid.

I think Carrie, you feel a host of emotions and the moments of numbness you describe, the absence of emotion or the inability to express it is also valid and I think it's quite natural. Tears are a spontaneous response to sadness or fear and I also agree with Tian that you and your husband may soon need some private moments to allow your tears and fears to mingle. Men can find a good cry every bit as cleansing and healing as women but some men think of tears as a complete lack of control and weakness and your husband may be terrified of giving in to his feelings because that may equate with giving up.

It's such a depleting and discouraging experience to watch a loved one, a lifemate, a soulmate suffer with serious illness for a prolonged period and to grapple with a sense of overwhelming helplessness to do anything about it. Life can be at times every bit as cruel as confusing as it can be comforting and calm. There are so many mysteries we can ponder, but I agree with Tian that using your precious energy to seek answers that elude us all only serves to upset you further. Sometimes we have no choice but to accept the things we cannot change or explain and it's best not to exhaust ourselves trying to change or explain the impossible.

What is now and always most worthwhile in life is the love and friendship for which we are blessed and these gifts make its painful mysteries more bearable and our relationships deeper and more meaningful. Life, the people we cherish and and celebrate it with, those whose memories are imprinted on our souls, these things matter most. Dwell on the love you share with your husband, Carrie. Love is life's most beautiful and powerful mystery and it will continue forever.

Much affection to you Carrie, and your husband and children. Tian and I and others are here for you and with you. I hope you get some rest tonight. Sleep well.

-hugs to all - xo
Cath1

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Reply by Tian

28 May 2012, 12:31 PM

For once I disagree with Cath1 (just a minor quibble actually). Love is not a mystery. It is the fuel that is keeping you going and its abundance in your husband's room ensures that it will be there whenever he draws his last breath regardless of where you might be.

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Reply by Cath1

28 May 2012, 1:16 PM

Good morning, Tian!;-)

Love is a mystery in the sense that there is no one universal definition of its multi-faceted depths and dimensions. It just is and it defies explanation, in my humble opinion. No worries about quibbling with me on the subject, Tian, and I agree totally with your beautiful assurance to Carrie about the constant presence of love between she and her husband.

-Hugs-

Cath1

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Reply by Carriek

29 May 2012, 3:44 AM

Thank you, thank you, thank you..... you both are wondeful friends that I have by my side and I soooo appreciate the time that you both take to always comfort and assure.
My husband is being sent home tomorrow... not because he is better, but because he has made it known that he wants to come home....
the problem that I have with this is...
in the beginning the palliative team asked my husband where he wished to die-- home or hospital
my husband clearly said hospital... we live in a beautiful new home and he did not want the house stigmatized by a death occuring in the home nor did he want the kids or I to be afraid, or not want to live here because of it....
but now is in and out of sleep, unable to process alot, and very panicky and wants to go home--
i dont think he knows that his end is near, but the Dr's are sending him home tomorrow by ambulance. We live in a popular subdivision (like a fishbowl) for all to take notice that he is home...
my fears,,, well you can imagine.. I have always been terrified by death. I somehow am sure that I wont be afraid of him as he is the man I love more than anything...however its the panic the shear wanting to help him and the death that terrifies me...
plus Im told not to call an ambulance rather the funeral home which will arrive with a white van to take him (Im told 3-4 hours later) IM SO AFRAID and let down, this is not what I imagined !!!!
I asked if I paid for an ambulance to take him then and was told no... that cannot happen. Its against my husbands wishes
but when the palliative Doctor tried to ask him, he panicked so the conversation ended with.... you can go home.
Please help me, talk me through this please.
ps
I will have the family still doing shifts 24 hrs around the clock, so I wont be alone... but they are afraid too. None of us have ever experienced anything even close to this...
plus remember my 14 yr old twins (they had a birthday 2 weeks ago) so barely 14.
Im tossed-- yes I want him here where he feels the love, where he feels comfortable and at home...
but the home that we have will never be the same... Im afraid that I will no longer want to live here...
nor will any other family... as it must be disclosed if selling..
help me please
C

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Reply by Tian

29 May 2012, 4:31 AM

Hi Carriek

From what you say it seems that it's better for your husband to stay in the hospital. But I'm a little confused. Just why did the palliative care doctor decide your husband would go home? Is he expecting him to return to the hospital? You should remind the doctor of the original desires of you and your husband and relate to him the dread that you have of your husband passing away at home. There is still time for the doctor to change his plan.

It makes for terrible reading but you might want to check out "When Death is Near" in the Asked and Answered section of this website. Our palliative care ward has a more comprehensive booklet that we hand out to families but I'm not sure if we will be able to get it online here. Perhaps your palliative care doctor has some similar reading material. If your husband is sent home will a professional come by to see how he is doing?

I know it's extremely harrowing but I suggest you try not to think about the implications for your house at the moment. It's difficult to think straight right now and your focus should be on your husband's comfort. From what your saying it seems the hospital is the best place for him. The doctor should see that or explain to you why he sees things differently and reassure you.

I'm here for you Carrie.

Tian

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Reply by Cath1

29 May 2012, 5:13 AM

Dear Carrie:

I'm so sorry that the communication between you and the palliative team is not ideal. Could you be too passive in asserting yourself with the doctor as it seems these decisions are being made without much consultation or explanation. Are you feeling afraid or intimidated about speaking up directly about your fears?

Your husband may well be coming to terms with the fact that he is dying which is why he is feeling a panic. Perhaps he thinks if he goes home somehow that he will feel safer than when in the hospital because that is where he knows he said he wanted to die? Now as the reality is setting in he may want to avoid the inevitable.

The decision on where a person dies involves more than the dying person as it requires the family and professional caregivers to be on board and willing to do what is required to make a home death as peaceful as is possible. When I read your message, I don't get the feeling anyone is asking how you feel and if you are prepared to accept your husband's decision to return home. I don't think it is fair or right that you are made to feel powerless and pressured to do something which you are feeling is so far out of your comfort zone.

I think Tian's advice to you is spot on. Speak candidly to the doctor first thing tomorrow morning and express your honest fears and let your doctor know that the decision is too sudden and you feel completely overwhelmed by the expectation placed upon you. Even with family support in the home, if you are this frightened, I don't think you should have to accept the decision. It is fine to challenge the decisions of others that will have such an impact on you and the family. Your husband's comfort is of course uppermost in your mind, but if you will feel extremely nervous and scared when he comes home that is not the best situation for him or you and the family.

Remember that what you are going through is stretching every emotional fibre of your being and in the circumstances, when exhausted and under stress, it is hard to make big decisions. You need help and support and clear explanations of what is coming and you need to express to the doctor your limitations. No one can do everything Carrie, and no one should expect you to.

Having said all that, I do believe that you do have what it takes to see your husband through to the end no matter where his end takes place. You must insist on more support and communication from all involved in your husband's dying. I wish there was some sort of medication that he could have to help calm him and keep him more comfortable. It's heartbreaking to hear how frightened he and you are both feeling.

Before my Mom died I was like you, terrified of death, but trust me Carrie when I tell you that the reality of seeing someone you love die is nothing to fear in the end. I witnessed the moment my Mom died and she was radiant and fully at peace. In that instant I knew her pain and suffering had ended with her last breath. Like you, I didn't think I had it in me to experience my sweet mother's death just as you think you won't be able to handle your husband's final moments, but I believe in you Carrie and I know you will be able to get through it with support and compassion.

Know we are here for you always, as you continue bravely and lovingly to care for your husband and family.

With much affection - hugs-
Cath1

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Reply by Tian

29 May 2012, 5:33 AM

I totally agree with Cath1. Wherever your husband spends his last days things can be done to calm the environment such as the presence of music or the visit of clergy. I can expound on that later.

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Reply by Cath1

29 May 2012, 5:57 AM

Dear Caron:

I just want you to know I think often of you and your husband and family and I'm wondering how things have been for you lately. You haven't written for a couple of weeks and I imagine your life is consumed with caregiving.

Please know that your husband, you and your family remain in my prayers.

-hugs- xo and goodnight for now.
Cath1

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