Comments on: Cherish?? Maybe not Every Moment

By: PeterT

PeterT — Wed, 10 Mar 2010 03:42:06 +0000

Kathy,
The unique characteristics of Lewy certainly are impossible to explain to anyone who hasn’t been with it day by day. The Bath Aide’s Supervisor left a message today that tomorrow Mary Ann will have a bed bath. When the new shower chair comes, we will see how that goes. Mary Ann does seem to be regaining a little of the strength she lost when we discontinued the Amantadine, now that she is on it again. It has been a strange week (as most of them are).

By: PeterT

PeterT — Wed, 10 Mar 2010 03:36:07 +0000

Christel, Thanks for the affirmation. It sure helps to have the outlet of writing about what we are experiencing. I always appreciate when someone takes the time to read it.
Pr. Pete

By: PeterT

PeterT — Wed, 10 Mar 2010 03:34:16 +0000

Thanks, Kim. Your input through Becky has been helpful. They think they have found the right chair. It should be delivered tomorrow. The Nurse and Social Worker both came today. They were great.

By: PeterT

PeterT — Wed, 10 Mar 2010 03:31:11 +0000

Thanks, Sandy.

By: PeterT

PeterT — Wed, 10 Mar 2010 03:30:03 +0000

Thanks, Rose, I am grateful to know about the Cross and the forgiveness that comes. It helps at times like this. Thanks for the prayers.
Pr. Pete

By: Kathy

Kathy — Tue, 09 Mar 2010 16:48:57 +0000

Peter,

I for one can surely relate to not being able to cherish every moment. We have certainly had our days of non cherishing here. I take some comfort in knowing that at some point I can look back and say, these were the good days, I had him (Hubby).
I’m so happy you have hospice, They are certainly “Johnny on the spot” for supplying needs.
As far as bathing, and I know you say Mary Ann enjoys her shower, have you given consideration to bed bathing? It would certainly cut down on the possibility of a serious injury. Soap plus water can make for a serious slippery situation even if she is sitting in a chair.
I also understand your desire for Mary Ann to eat more. I am glad Becky shared that e-mail with you about food requirements. I also realize it’s difficult to accept.
Thoughts and prayers are with you Peter as well as with all of us traveling this Lewy road.
Kathy

By: Christel

Christel — Tue, 09 Mar 2010 16:42:02 +0000

Your ability to communicate is remarkable. For those of us who have watched the decline of one we love, the pain, exhaustion, and love do create conflicts. Thank you for sharing in such a meaningful way.

By: Kim

Kim — Tue, 09 Mar 2010 15:33:54 +0000

I am so thankful that you are allowing the support of hospice. A wonderful organization that will help guide you in ways you possibly can’t even imagine. If they are unable to find what you need for the shower chair, let me know. It sounds like what we use for my dad would possibly be functional for you and Mary Ann too. Oh, and Pete, it’s okay to not cherish every single moment, we would worry more if you did. It is obvious how much you cherish her and the overall experience.

By: Sandy

Sandy — Tue, 09 Mar 2010 12:54:09 +0000

Pr. Pete:

Remember it is ok to be human. The love has not changed..it remains. It is ok to be frustrated Pete who loves so much he wants her to have NO PAIN or suffering. Take it easy on yourself. Rest in Him!

By: Rose Brunkow

Rose Brunkow — Tue, 09 Mar 2010 03:20:53 +0000

Pastor,

My heart goes out to you and your beloved Mary Ann. I hope you do not waste a lot of time feeling guilty for a perfectly human response. I know, even though I never really knew Mary Ann that for her you are her angel. God’s peace and strength is what I pray for the days ahead.

Rose B