I knew this day was coming. My husband and I have had some talks about my parents, and we’ve seen the toll that Lewy has taken on both them and my aunt. But up until now, they’ve been handling it. Maybe not well, but plodding along, with the home health interventions pretty heavily.
We stepped back because we thought that’s what they wanted and needed, plus life is just so busy, with this homestead project always wanting attention like an out of control toddler.
But yesterday Mom pulled me aside. Stated the reality. I knew it. So why is it so hard?
I feel like time is running out, because it is.
We are losing my sweet dad, and I don’t want to.
Maybe I’m not ready. Maybe he is more ready than we are. There’s no maybe for me. I am not ready.
Yesterday, when we visited after too long away, he ate slowly. He moved with difficulty. But he made jokes with a twinkle in his eyes. That’s my dad. He’s still there. Behind the Lewy Body Dementia that’s robbing him of everything else–he’s still Dad. And Grandpa. And husband.
And I feel more than ever like time is running out.
Because it is.
I know he’s tired.
I know life is very hard for him.
More and more, he’s like a lost child.
He has to wait for help to to everything important and trivial. He’s losing his zest for life, and I hate that. But who can blame him?
Mom said Hospice.
It’s the first time she’s gone there, and to me, that signals the beginning of somewhere we’ve never been. Intellectually and practically, we’ve talked about someday, down the road, when things get bad. Apparently that’s now.
Go away, Hospice. We need you but don’t want you. I don’t want to think of my daddy dying.
Go away Lewy! We’ve always hated you!
But nobody asked me. No one asked Mom. Lewy the Bully just came and took over. He beat my dad up and left his body weak. He steals his reality and he robs his dignity. Until, like with all bullies, a broken down person can’t fight anymore.
I can’t make life stop. I can’t compartmentalize this and stop everything else. Sometimes I wish I could.
Nobody asked if this was a good time. It’s not. But here we are. With too much on our plates and more being served. I feel like I’m standing at the ice cream machine and it’s pumping out more and more soft serve as I twirl my cone around and around. The cone is as high as it can go, and now it’s toppling and I’m catching cold ice cream in my hands.
I’m not saying this because it’s an imposition. It’s just that I thought we had more time. I knew it but I didn’t.
Life is busy, but knowing that time is short definitely shifts our priorities. We don’t have a timeline. Life doesn’t come with that. And neither does death
No matter what we do in life, there will be some regrets. I see that more and more. You can never do everything perfectly, you just do the best you can.
We have to finish our house. It’s been too long. We are weary of this project. It needs to wrap up. But, it has to share priority, because Dad won’t wait.
I’ve come up with a plan. Me and my plans! They hardly ever work out, but I still have to try. We will do our best to hit our house projects in the mornings. Then we will pack up our schoolwork and go do that at Mom and Dad’s. Hopefully give Mom and Aunt Peggy some respite while disrupting their world at the same time. They are tired and need help.
Which brings us back to Hospice.
I don’t know how Hospice will change things. I’ve heard they help a lot. At least Dad will get a hospital bed, and continue with home care. We will wait to see if it’s more care than he’s been getting with home health.
Life is changing. I hate change. I especially hate this one.
Lord, give us strength. We’re gonna need it.
And wrap your arms around my Dad. He loves you and trusts you. He’s like a child–hold him up and be gentle with him, please. That’s all I ask.
Laurie, Everything you said is where I am at now. I want more memories, but I want peace and comfort for my parents. They are so agitated, helpless. They both know what’s coming. I feel so for them. Prayers for you and your family!!!
You and yours too, Dee.
It’s really drawing out for you, and I know that it makes it so hard for your family.
Some day there will be no more tears.
Many prayers. Your post is so loving, caring, open and inspiring. May God give you strength, wisdom and comfort. ❤️
Thank you. Without God, we’d be lost.
My husband and I call it “Short Time”. That’s code for change is coming that is going to make one choke on the very air that they try to breathe and cause their heart to beat so slowly that time stands still. Hugs to you and your family.
Wow. That is a definite dread. But I think it is accurate. Some things we just have to insure.
Oh, dear Laurie!! My heart is hurting for you and the family. It’s something we all know, but when the reality hits of how truly short time is, it is very painful. I’m glad to hear of your plan; make the most of every minute you can. Lifting you all up in prayer and praying you will experience God’s comforting presence.
Thank you, Sandy.
I am So sorry to hear about your sadness. You will be carried, but sometimes we don’t realize we have been until we look back.
It’s still hard.
Would be way worse without hope of a future with no more tears.