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Saturday, January 8, 2011

Diane said…

“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?”

“Yes!”

“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.

4 comments:

Thimbelle said...

First of all, you must remember, every day that long before you were a Pastor, you were a daughter.

And as daughters who are caring for our Moms, it becomes hard when we have to do things that we thought we would NEVER have to do for our parents.

I've said it before - and I'll say it again... There is no chapter in The Daughter Handbook about this stuff.

Now, about your Mom's med schedule: First of all, is it possible that you can simply break the pills into three dosing times per day - that just *happen* to coincide with breakfast, lunch and dinner? If you are worried about this, it's time to make friends with your Pharmacist; they will be able to tell you if your proposed schedule will work, or if there are meds that are contraindicated in your (hopefully simplified) schedule.

IF for some reason you can't change the multiple pill times (i.e. before breakfast and after breakfast) then you may want to consider bringing in a paid Aide to administer Mom (and Dad's) meds every morning. If you can find the Perfect Aide, she will not only help you with the meds, but also with breakfast, and any dressing/bathing needs that your Mom might have.

And - this is a HUGE bonus - typically, AD patients respond BETTER to "outsiders" than they do to their primary caregivers. So... you get two hours in the morning - when you need them the most! and a more cooperative Mom. Talk about a win-win!

If you go through an Agency, be sure and tell them that Sunday's are a MUST!

Sometimes, God's light shines through us... and sometimes it shines *around* us, *on* us, and *over* us, to remind us that he truly is our Father God.

You are doing an AMAZING job. I promise! :)

(((hugs))) Thim

Diane said...

I say again, please, please, please don't stop writing. If what you say offends people, it may be that their loved one just isn't there yet. I truly appreciate you expressing what some of us (who knows maybe all of us) are feeling. And, speaking for myself I love that you are a Pastor and are real. I believe that God would have it that way. Then, we know again that when we are weak, He indeed is strong. Now, back to your blog, I look for it every morning while I am watching my Dad either stare blankly or sleep when he used to have awesome conversations with me. Sometimes, I am angry and resentful to, but have decided to direct that anger at the disease, and so far that is working. May God grant you a smooth day as you lead others in worship to Him!!!!!! : )

Mary said...

I would not want a pastor who was somehow able to live outside the world that I inhabit. I want one that experiences the same emotions as I do. Even God, when he came to minister to us, came as a man - one who experienced disappointment, anger, grief, weariness, etc. So we know these emotions are not ungodly.

Don't beat yourself up! It leaves ugly bruises :)

Cher said...

Mom,
I agree with all of these wonderful ladies who have so wonderfully put what I sometimes fail to say. A Pastor that is real is so much better then those pastors that seems so fake. Remember David G? He was real, we saw him cry and we've seen him laugh and I dare say we've seen him preturbed, but some of the other's just don't seem to be on the same level as an ordinary person.. so how can they teach us and help us through those times that never touch them?

I'd rather have a real pastor with real emotions who struggles then a holyer than thou one who has no clue what I'm going through!

I agree with Thimbelle I know Gma would not be happy but a scheldule that co esists with the other daily tasks would be easier for everyone. As she continues down her road this may make things easier for her to. That staying up till after 10pm (cause it takes a while and she wants to talk) and then being up and functioning at 7 isn't always easy. It needs to be something that works for you to.

Hang in there! But please don't stop writing if nothing else it helps the rest of us deal with our feelings to. And I look forwad to your Blog just ask Corey :)

Loves and a big hug!