Still Fighting
Jul 6 2011 in The Unit Known As Shandi's blog by The Unit Known as Shandi
Today was an up and down kind of day. I’d have to call it a tie between Mom’s will to live and the C Diff. My brother handled making arrangements with the cemetery and funeral home today, which I so appreciate. He respected my wishes, and my sister’s, but handled all the unpleasant details. Mom is very weak, too weak to talk, but I’ve had kisses and little smiles. She’s aware of everything that is going on around her, and her mind is clear.
I decided today to send a daily email with a picture of Mom to a family email list, and to my Facebook friends. I haven’t posted many pictures of Mom on caregiving.com, but I realized today that you have all become part of my extended family. When I joined caregiving.com, I wanted to remain anonymous for Mom’s privacy (that’s why the pseudonym). I’ve decided to break that, and share a picture of Mom with all of you each day as Mom and I battle this horrible infection. The picture for today was taken just a week or so ago, after Mom returned home from the adult family home. The little boy is my grandson, who lived with us for the first five years of his life and is now seven. Walkers, wheelchairs, and loving his great-grandma is a normal part of his life. He is an amazing child.
Thank you, all, for your support and caring. I’m hanging in here, but am very tired. Tomorrow, I’m hoping to slow things down a little and focus on spending time with Mom. I plan to wheel her hospital bed outside in the fresh air and let her see the river. Maybe play the piano for her, and just for a while, unplug the telephone. She is so loved. I counted 24 incoming calls today (from the caller ID, there’s no way I could have remembered how many). I think I may delegate the phone calls to my sister. I’m so glad everyone cares, but it’s hard to answer that many calls and care for Mom! Also a visit from my brother, who stayed with me when the hospice social worker came, and a bath aide.
G-J said on July 7, 2011
Thank you for the updates and the picture. Regarding the phone calls, I read a suggestion once to change the message on your answering machine so the outgoing message people hear gives them the information they want to know. They get their update and can leave a message, but you don’t have to answer the phone.
Bette said on July 7, 2011
Shandi,
Thank you so much for the update and for the photo – this is the sweetest picture I have ever seen – gives much to think about for me today.
You continue to be in my thoughts and prayers. You are such a wonderful daughter.
Denise said on July 7, 2011
Hi TUKAS–I love the photo!! Wow, that truly is a picture that speaks a 1,000 words.
I wonder… What can you do today for yourself to help your mom be released from the fight? I think the plans for today sound wonderful. Is there anything else you’d like to add? Do you have unspoken words? (I can’t imagine you do, but just wanted to check.) A last request? A last activity? I guess I’m just wondering what you can do for yourself that will bring you peace so you both know peace? Your mom is already at peace.
You’ve done all you can do. You’ve achieved an amazing goal. Your mom is in good hands.
How can you make the transfer from your hands to the next set of hands?
Thinking of you and feeling so proud of what you’ve accomplished. It’s truly miraculous.
G-J said on July 7, 2011
I thought of something else. I’m sure you’ve already been told, but hospice made sure we knew that the sense of hearing lasts until the very end. You can continue to talk to your mother even when it seems she isn’t listening.
On a humorous note regarding this, both my Dad and my friend’s Dad couldn’t hear with hearing aids, so we wondered what, if anything, they could hear at the end since they weren’t wearing their hearing aids!
Unit Known as Shandi said on July 7, 2011
Mom has about 65% hearing loss. As long as things aren’t too chaotic and noisy in the house (which it gets to be at times with all the relatives and Hospice people), we are keeping her hearing aids in. I asked her yesterday if she wanted them, and she nodded yes.
The phone situation is complicated. I can’t ignore calls from my mother-in-law (5 yesterday) because we never know if she really needs something (she lives alone). Hospice people need to reach us to confirm appointments (and each of them use their private cell phone, so it’s not like I can identify it’s them from the caller ID). Today, Mom’s 93 year old brother will be calling. My brother needed to reach me multiple times yesterday about the arrangements, since I’m POA.
Denise, I think Mom and I have said everything we need to say to each other through the years. I do talk to her, a lot, and each evening when we go to sleep (I’m sleeping right beside her), I recount the messages I’ve been asked to give her for the day and reassure her that we will get through this, one way or the other. I’m hoping to have some medical answers today when the nurse manager comes. Mom has not improved, and the antibiotics are done on Saturday morning. If I knew which way this was going, it would help me emotionally, and I’d know better how to talk to Mom. I can’t imagine her recovering from this, but we’ve been there twice before (at least) this year. I don’t want to tell her that she’s “going” until I know that’s where we are. For now, she (and I) are still fighting.
Trish said on July 7, 2011
What a beautiful picture, Shandi. Thank you for sharing your mom (and grandson) with us. Thinking of you.
Jo said on July 7, 2011
I agree with everyone, a beautiful picture, Shandi. Thank-you for sharing and including us in these times.
Having walked this road I can think of a hundred things to say but know that a hug and squeeze of the hand and a soft smile mean the most right now. (((Shandi))) Praying on…
Kathy said on July 7, 2011
Shandi,
What a precious picture!
Special thoughts and prayers for all of you as you navigate through this unknown.
Sharon said on July 7, 2011
Shandi, This is indeed a beautiful picture. Mt heart and prayers are with you.
kristin said on July 7, 2011
Shandi, thank you for the beautiful picture. It tells us so much. I hope tomorrow is a peaceful day for your.