How do you begin to think about the beginning of the end...

coping in CA
coping in CA Member Posts: 20
in Caregivers #1
How does one even start thinking about the beginning of the end. I talked to my wife's onc at length this evening and since she has cancer cells in the brain (mets cells in the csf), there are parts of her brain that will probably be permanently affected. She told me she has what they call the 'flat affect'. She is very stoic and hard to talk to. She said it could also be part of depression. The reality is that she will never be the person I fell in love with. And most likely will not improve. The doc said that since I know her the best that she will look to me for guidance as to continuing treatment. How does one deal with that - I am only 46 with a 3 year old.

I have read a some about the quality vs. quantity. I guess I just have to wait and see. Doc is giving her 2 weeks to evaluate. She is in a rehab right now. If she stops smiling when she sees the kid, then maybe that is a sign.

I am scared and really don't want to go through this process. This is not what we 'signed on for'. I know I will have to. Ahh - the understanding of the stages of grief. Doesn't really help my helplessness right now.

Shari

Comments

  • mswijiknyc
    mswijiknyc Member Posts: 421
    #2
    transition
    The hospice staff used this word a lot when talking about Patrick. It was less about looking at things as an end, even though it was an end of life as it can be seen. It was more about changing your though processes from actively moving forward toward treatment and a new normal to offering comfort, serenity, and love to help the person ease into the next life.

    I believe there is something beyond the seen and that the transitioning get a glimpse of it and in their own way try to let us know as best they can. I believe that your wife is feeling trapped inside herself and wants to be who she is but is unable to outwardly show it. My husband became completely nonverbal 4 weeks prior to his passing and for someone who had plenty to say I know that it was painfully hard for him.

    This is not an easy decision, but there are a lot of people here if you need advice or need to vent.
    Lots of hugs,
    April
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #3
    Rock
    You are in that rock and hard place spot. I am so sorry that you are faced with such a hard decision. My husband and I had been married for 42 years when he passed, and we had had a lot of time to talk about those end of life decisions. He had an advanced health care directive which I recommend everyone have. I knew what he wanted and was ready to carry out those wishes. In the end, i didn't have to, but I was prepared. I don't know how prepared I would have been early in our marriage. Know that whatever decision you make may bring regrets. There is no right answer and all the variables may cause you to second guess yourself. Just do what you think is right for all of you. Do the best you can at this time. See what the two weeks bring and then make your decision based on what you think she would want. My prayers will be with you. Fay
  • coping in CA
    coping in CA Member Posts: 20
    #4
    grandmafay said:

    Rock
    You are in that rock and hard place spot. I am so sorry that you are faced with such a hard decision. My husband and I had been married for 42 years when he passed, and we had had a lot of time to talk about those end of life decisions. He had an advanced health care directive which I recommend everyone have. I knew what he wanted and was ready to carry out those wishes. In the end, i didn't have to, but I was prepared. I don't know how prepared I would have been early in our marriage. Know that whatever decision you make may bring regrets. There is no right answer and all the variables may cause you to second guess yourself. Just do what you think is right for all of you. Do the best you can at this time. See what the two weeks bring and then make your decision based on what you think she would want. My prayers will be with you. Fay

    comfort
    Those are comforting words. We have been able to discuss these issues. Actually today after a hydration session we were actually able to discuss her illness and she did show a lot of emotion. She wanted me to start writing down people that she would want to see at hospice (and not) and who would assist at the service (I just don't like the word funeral). It was not easy, but we were able to laugh a little and tried to keep a very serious topic light.

    I know this is the upswing of the roller coaster, but at least today there was some light within her. Hopefully tomorrow too when I bring our son to visit. She says she wants to live. We did discuss, however, the signs that would indicate stopping treatment. My heart breaks over this.

    Thank you for your prayers!

    Shari
  • coping in CA
    coping in CA Member Posts: 20
    #5
    mswijiknyc said:

    transition
    The hospice staff used this word a lot when talking about Patrick. It was less about looking at things as an end, even though it was an end of life as it can be seen. It was more about changing your though processes from actively moving forward toward treatment and a new normal to offering comfort, serenity, and love to help the person ease into the next life.

    I believe there is something beyond the seen and that the transitioning get a glimpse of it and in their own way try to let us know as best they can. I believe that your wife is feeling trapped inside herself and wants to be who she is but is unable to outwardly show it. My husband became completely nonverbal 4 weeks prior to his passing and for someone who had plenty to say I know that it was painfully hard for him.

    This is not an easy decision, but there are a lot of people here if you need advice or need to vent.
    Lots of hugs,
    April

    a good day
    Thanks so much, April. She did tell me that if she could not talk, that we would need a sign. We do have a code word if her language is limited. Today she was emotional and we were able to talk about it. It was like a little break in the clouds. I do her to be at peace and be able to accept that the other side is peaceful. It is hard for her not to envision raising our son together. My heart breaks over this. Once moment at a time.

    Got the hugs, back at ya!

    Shari

    PS originally from upstate NY, lots of family in NYC
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #6
    one thing
    (ok two things)

    "Will this matter ten years from now?" - it was all too easy for me to get wrapped up in the daily grind of things when Patrick was in hospice. It took a gentle reminder from the social worker that our time was limited , I needed to let go of the small things that really just didn't matter.

    "No regrets." - says it all.

    I used the word service also, helped to ease the transition. (there's that word again . . . ) Take each moment, each day as it comes. In each day there will be a ray of sun, some days you have to look harder to find it but it's there.

    Be good to yourself during this time too. Being the primary caregiver is the toughest job you will ever love.

    Hugs and loves,
    April
  • yv1214
    yv1214 Member Posts: 72
    #7
    mswijiknyc said:

    one thing
    (ok two things)

    "Will this matter ten years from now?" - it was all too easy for me to get wrapped up in the daily grind of things when Patrick was in hospice. It took a gentle reminder from the social worker that our time was limited , I needed to let go of the small things that really just didn't matter.

    "No regrets." - says it all.

    I used the word service also, helped to ease the transition. (there's that word again . . . ) Take each moment, each day as it comes. In each day there will be a ray of sun, some days you have to look harder to find it but it's there.

    Be good to yourself during this time too. Being the primary caregiver is the toughest job you will ever love.

    Hugs and loves,
    April

    Shari
    I am so sorry that you are going through this, and I can relate since my mom always had something to say and somewher to be. My mom is a born again christian who is always preaching the word of god and to have her now with out words crossing her lips its very disconcerting and scary.

    She didn't mention to me last night "I am dying" and that was hard to hear since she has not been very accepting of her illness till now.

    I wish you luck and please do not hesitate to reach out if you want to chat.

    Yessy

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