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The day after Christmas and all though the house...trying to get back that grip.

Saturday, December 26, 2015

No kids toys to step on this morning but I need to vacuum. Little kids and the "edible" crackers don't mix. Likewise all the prizes from the explosive crackers. Little gifties scattered around. My "kid" visitors are still snuggled in their beds. DH is trying to get some sleep. I gave up.

My problem was the food. It's the darned EE striking. For one day I tried to give up my own sadness. I made it look liked it worked. There was nothing I didn't eat.

I spent time with my kids explaining the future. Each has their own ideas of what Dad should do so he can get better. I told them tactics had to change so I can have some peace. Hounding him about what to eat won't help because the damage is done. Giving him pep talks on exercise only frustrates him because the nerve signals are gone. He can't move. I had a booklet from the MD to explain the treatment. It was set aside in their own denials.

He came through the procedure from Thursday, ok. More problems were revealed, more biopsies. The MD showed a LOT of sympathy when giving me instructions to call for results and what to do next. I knew this wouldn't get better. There was no relief from the pain from what was done and now there's more. He put on a brave front yesterday.

I'm throwing the leftovers in the trash as soon as my visitors take what they want.
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  • NHES220
    I'm only going to reiterate what others have said. Your first priority is you and DH - no one else. The kids are in denial. I recognize it from when my brother was diagnosed with colon cancer and his health deteriorated. It took a long time for my Mom to come to terms with the fact that he was not going to be cured. Keeping you in my thoughts!
    1799 days ago
    1799 days ago

    1802 days ago
    You did the right thing. The kids needed to know what they are dealing with, just like you did. It doesn't mean they have to give up hope but they also will have to come to terms with this and have realistic expectations. It may take a while as you will all have to grieve in your own way if the treatment is not as effective as you want it to be, including your husband.

    Not eating well yesterday doesn't seem real significant with what you have to deal with. Just try to fix healthy meals for you and your hubby and don't expect perfection. Don't beat yourself up. Life has a way of doing that for us.

    Living in fear and dread won't ever help and it is not who you are. Everyone, including animals, can sense fear. The answer sometimes is to take what you have left and build on that. I've had to do that many times and it can work out better than you anticipate. Remain optimistic. Don't allow anything to steal your joy. If you do it will have a negative impact on your hubby and your family as well as you. You are a fighter. Prepare for battle.
    1802 days ago
    I'm so proud of you. You're a wonderful person, but you aren't a good witch or fairy godmother just do your best, throw out or freeze those leftovers, and don't forget to take care of yourself in all the chaos. Bless you and your family.
    1803 days ago
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    1803 days ago
    I have found that it takes up so much energy to give up my sadness for a day - it totally wears me out. And, yes, food is always mixed in there - we have to make ourself numb to reality to manage so all the mental stops are thrown out the window!
    And -- that is why it is so, so important that you get time for yourself -- you need rest and time to take care of yourself. It's also especially important that you find a therapist. They would be really good at helping you make some kind of sense out of all of this which would help you now and in the future. It is so awesome that your family wants to help! They can stay and visit with dad -- it's a win-win!
    You are still in my prayers. Take care!
    1803 days ago
    We can and do "give up our sadness" and "make it look like it worked" briefly: and that's an entirely appropriate thing to do: briefly. Your DH put on a brave front too. And: that was the biggest gift you both could have given to your kids and grandkids.

    But: as you say, the reality is (even if your kids can't bear to hear it) the damage has been done. Nagging may make the nagger feel better but does little for the naggee!! Nagging is ultimately an empty gesture which attempts to shift responsibility and allocate blame: when the time for blaming (if ever appropriate) is past.

    However, you can give your kids the further gift of "no regrets" at the end, if you permit them to do a generous portion of the tougher stuff which is necessary and required now: the stuff that's soooooo much harder to deliver than nagging.

    My sister and I did those things for our parents at the end of their lives in 1997: and although it was unbearably sad when they died, I felt and still feel absolutely no regret. We did all we could. We behaved immaculately, and with huge kindness. I was proud of myself and my sister. We drew together. Our parents noticed. My relationship with my sister has also helped sustain me in my grief, and she in hers, and helped heal. We were in fact speaking of just this yesterday -- that's how powerful it still is.

    1803 days ago
    But just in case the DAWG didn't convince you... I'm with her about your need to nurture YOU and be strong about defending those boundaries. You're no good to your DH (or to the kids) if you have nothing left to give. Breathe, be kind to yourself in your self-talk... yeah, you ate more than you planned over this family time... guess what? So did most of the rest of us during OUR family times. You can detox when the kids/grands are gone... and you WILL feel better for having returned to "as normal as can be managed".

    Good plan to toss out the leftovers, so in a weak moment they won't be there.

    Sadness at the prognosis is expected, fear of the future is normal. You're in a difficult situation... get that specific help, and get the respite you need... you are an incredible, strong, compassionate woman... worth taking care of. And loved and prayed for from a distance! emoticon
    1803 days ago
  • GINA180847
    Will remember your family in prayer. Be easy on yourself.
    1803 days ago
    Wow, all I can say is that DOGLADY summed it up pretty perfectly. Caregiving sucks you dry. I KNOW. So whatever it takes to replenish that emotional and physical energy -- that's what we have to do.

    I learned NOT to be shy and genteel in my requests for help. They are specific and direct. No guess work. "I need you to get XYZ @ the store" . . . . whatever the help is that you need. Ask for it.

    As for the kids, yup, they're not on the same page for sure. I can imagine it's scary for you, but they DON'T realize that it's scary for you too. In different ways!

    blessings. HUGS HUGS HUGS
    1803 days ago
    You are going to smack me next time we get together because I sound like a broken record. The well cannot continue to give water unless it replenishes itself. There has to be a stream of life giving water feeding that well. Only you know what you need to replenish the well. Set the boundaries that you need to keep you going. Your first priority is YOU with DH right behind you.

    These are some things that I would say if I were in your position.

    * No. I cannot watch DGS at that time. That is when I go to water aerobics. Maybe later.
    * Yes, you can help. Would you pick up the grocery order that I placed on line? Pick up times are from 3 to 5. That will give me a chance to rest.
    * Thank you for offering to bring dinner. Please stay and eat it with us. DH loves company.

    Getting respite from the physical demands of caregiving will help restore the emotional reserves. So you ate too much yesterday. So did almost everyone else. Don't beat yourself up. Enjoy it. Save the memory as a happy one with everyone together. The pictures show a happy family.

    The holidays are a beast once you grow up, aren't they?

    I pray for you. This ain't easy.
    1803 days ago
    Denial is a powerful cocoon...and an understandable response. Reality is crashing in around you...so denial flew out your window a long time ago. I wish I could spell you, take you to lunch, or have a heart pounding walk and talk. Sadly, I can only offer up prayers for you and yours. Make sure your voice is heard, and try REALLY hard to take care of yOu...much easier said than done. Hugs for you, deb
    1803 days ago
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    1803 days ago
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