It is very, very sad.

Thank you all for your replies. I just printed them up but haven't read them yet. I'll write again soon but I truly thank you for this. I see the site has changed a little and am trying to find what to check when I want to be notified of posts. Anyone know off hand, I'll look around some more.

Hello Everyone,

I understand where all you caregivers are at this point because I too had many of the same feelings. I loved my husband and didn't want him to die but I wanted relief from the stress and the physical abuse to my body. The emotions are so complicated. Who can put a guilt trip on us that equals what we inflict on ourselves? We feel like we are in hell because we are. We do not deserve any of it.

Today is the one year anniversary of Charlie's death. I miss him terribly, but I miss who he was before Lewy ravaged our lives. I am grateful for the physical and emotional release for myself as well as for Charlie's relief from his sufferings.

Everyone has to have some release from the huge load that is caregiving and sometimes letting off a little steam in this forum gives just enough relief to be able to get through another 24-hours. A large part of my frustration was feeling like I was locked in a time warp, not able to make any plans, not knowing how long I would have to continue my life of constant caregiving 24/7/365, not knowing if I would die before Charlie did. It is too much for anyone and yet we continue because we can't do otherwise.

May God pour out His blessings on you all and give you strength to continue. Someone aptly quoted David, "O Lord, how long?"

Joy

Joy,
I'm thinking of you on this anniversary.
Robin

Same here, Joy. I hope you find more peace each day. And you're so right about the guilt we inflict on ourselves. Lynn

My MIL barely walks. She sits in her chair all day and only manages to get to the bathroom which is ten steps away. She also doesn't talk except to say "Ooo, thank you, love" whenever I bring her anything. She calls everyone "love" in case she doesn't get their name right. Today we managed to get her into the car for a ride to get ice cream (we go through the drive through). First time in months. The hardest part of all of this is that you never can let your guard down. It's as if you are always in fight or flight mode because their condition can change so quickly. I can imagine how the stress builds up over time for some of you. Luckily we can afford a private care giver during the day, so we still have our separate lives away from Lewy Land. Keep up the good deeds, everyone. Do not feel guilt over your feelings. Only worry about what you can personally change, otherwise you'll never be at peace. Peace!

"Love" is probably better than "what's your name"!

My LO shuffled around for a couple of years. The last months of his life he became more unbalanced...fell a couple of times. He didn't quit walking till 2 weeks prior to his death. If you need help with his personal care have his doctor order hospice to aid you. I wish they had ordered it sooner for us as our time together after hospice came in was quality time.

Lori, I hope you have, or can get, help with your dad. As bad as it sounds, if this had to happen I'm glad it was with my "smaller" parent. No way could I have lifted my Dad! I don't know what I would have done.

I also hope you're careful with your back, shoulders, knees and everything else that goes into lifting someone heavy. Your dad needs you healthy.

Everyone, I feel like I've just been in the middle of a big group hug. I'm sorry, Lori, that I diverted the group a bit. But isn't everyone here wonderful! I wouldn't get through this without all of you.

Kate