“Just reading it helps to encourage others going through this that we aren't alone. God Bless you and your precious family.”
Thank you Diane for those kind words. I appreciate them, but sometimes I feel as if I don’t deserve them.
I was talking to a friend yesterday whose Mom had AD and died a few years ago. She said she felt so much guilt at times. Every time she lost her temper. Every time she was short. Every time she wished her mom would just go away… I do too. But mainly I feel so unequipped! How can every day be so different and difficult? Why can’t there be any continuity? Why can’t I plan- and then actually know the plan will go through?
The emotional and physical toll caregivers go through is tremendous.
My mother doesn’t have a schedule except the one I’ve put her on. But that schedule doesn’t always pan out. 7:00 AM for first pills. 7:30 AM for after breakfast pills. Then I can start my day. This only works if Mom gets up before 7AM. Which she was doing regularly up until about a month ago. Now it can be any where from 6AM to 8:30AM. My problem is I need to be at the church on Sundays at 8 AM. And I really need to be in my office most mornings by 8:30 AM. I can’t trust Dad to give her the pills- he sometimes forgets to take his… So when this happens I start my day frustrated and resentful and angry. Some Sundays I just leave the before breakfast pills out and give her the after breakfast pills after I get home from church. I know I shouldn’t do it this way, but I’m not sure what else to do.
If I try to get her up before she is ready (which is not easy to do with someone who is totally deaf and confused upon awakening) I would have to do it at least by 6:30 AM because it would take until at least 7:30 AM to get her to the place where she could swallow her pills without choking.
And then there are the nights I would love to go to bed before 10PM. NEED to go to bed before 10PM. But 10PM is the time I give Mom her pills. She used to take her before bed pills anywhere from 11PM-1AM. When I took over her medication completely, I set the 10PM time. And the fit she has when I vary her schedule isn’t worth the extra 30 minutes to an hour of sleep most nights. Especially right before bed.
So there are times I really resent that I don’t have as much freedom as I used to have. My DH and my son are sometimes able to give Mom her pills. But since my DH gets up at 3AM to get ready for work most days, he can’t stay up till 10P most nights. And my son isn’t always available.
So I carry resentment (especially when I am tired) and that in turn leads to guilt.
And I look at Mom and wish I could see my mother, but she’s not there any more. Others outside our home consider some of the things she says or does cute. I can’t see the cute anymore. I can see the humor at times. But I can’t see the cute or the lovable most of the time.
The other day she said:
“Have I been giving you a hard time today?”
“Oh- I wasn’t sure if I was giving you a hard time or if you were giving me a hard time.”
I’ve considered not blogging anymore because I am afraid I will say something to offend others. I’m a pastor- but sometimes I feel so ungodly. How can I ever be an example of God’s light when I feel so dark some days? But I know I can do all things through God who strengthens me and I cling to that. Even when I don’t see the light. And sometimes the light comes from the comments of those who read my blog. You have no idea how much you are appreciated. All of you.