It certainly is normal for you to want the torture and suffering to stop for the ones we love. When you finally realize that no matter how hard you try andno matter what you do, they are not going to get better, it is only natural to want the one thing that can happen to help.

Our group is just a tiny group of people who are suffering with this monstrous disease that not only takes out the loved one we are caring for, but takes others down with it.

Just keep praying for peace. You have my prayers also.
XO Carolyn

God bless her ...it is so hard on all of our kids (no matter how old they are0. This disease leaves no one untouched by its devastation. The sadness and helplessness is overwhelming.

I often remind myself that I am not the only one hurting our girls and all the family are also devastated. GUILT is a word we have to just erase from our vocabulary!

Our son was 12 when all this catastrophic stuff started happening to his Dad and impacting our family.... and not one moment of his life since then has been the slightest bit 'normal'. It is one of my GREAT sadnesses......

My daughter and I are going to a counselor tomorrow. She is second to me in stress from all of this because she lives here with me, the other 2 kids don't. They help but they aren't here 36/8 like Alannah and I are. She is feeling the strain and so we decided we would go together. Perhaps there is a forgotten group of caregivers, the secondary ones, like my daughter.
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Great idea Deborah! I hope you can find a way to help her. Please assure her, which I know you have, but it is perfectly normal for her to want him to pass to end the suffering for all of you.

I just went through all that myself and I have no regrets that this body of his is at peace now. I miss my husband, but the person I was caring for was not him.

I hope the counselor can help her (andyou) to get rid of the guilt feelings. Peace be with you both!
xo Carolyn

Best of luck to you both.I pray it helps! Big cyber hug to you both!!!!!!

Oh, boy!, can we all relate to what she is feeling. As Ken declines, the guilt gets worse. I think when they are gone we will all start healing, but we will never forget nor understand this journey.

Love to all of you,

Sharon

It did good to talk with the therapist, I didn't learn anything new she just helped me unburden myself and told me to allow myself to feel imperfect. My daughter talked too and I feel blessed to have her and my other kids we all understand each other and it was nice to get feed back from an outside party. She did roll her backs when I said they won't take Rollie into Hopsice until he can't walk, but what can we do, guidelines are guidelines.

Deborah
Im glad talking with your daughter and an "outsider" gave you some comfort. Sorry youre experiencing the hospice hussle.

Hospice agreed to take mom while she was on her "death bed" and one note from a dr that had never seen her before, stating she was "alert" because she was sitting up in bed and trying to "garble" he said she was alert and Hospice was called off. Luckily that dr was fired on the spot and told to never return to her room!!!! The next day hospice re-evaluated her and low and behold they made her an accute status and of course passed the following day. Things change in a blink of an eye... and unfortunately it really depends who has their eye on our loved ones at that moment...to determine their "status/need". So sorry you have to deal with it. Have them reassess your hubby as soon as ANY change happens. Even if he can "walk" have a Dr get on board asking for the eval...maybe that will help.

As the nurses and moms dr/surgeon said... there are ways to get around those guidelines. They started an IV, and stopped trying to give meds by mouth, therefore she became an "acute status". Have your dr suggest a indwelling catheter or something that changes his current status. Just my opinion, but both you and hubby need the help. Good luck to you.
HUGS Janel