Wild Day Yesterday
Jul 13 2011 in The Unit Known As Shandi's blog by The Unit Known as Shandi
I didn’t post a photo of the day yesterday, and I didn’t mean to make you worry. There was just no time to do it! On the plus side (I think), Mom’s vital signs are more stable and she’s eating and drinking, and talking like crazy. However, her mind is doing some very unusual things.
She told me that her water broke, and she was in labor, and to go get the wheelbarrow to take her to the hospital. She said she was 27 years old. This morning, she thinks she’s had the baby, and we’re taking turns holding it. She got mad at my husband (who has been amazing through this) because he left the baby on the bed.
There was a boat full of people (all of whom are now in heaven, including my dad) in the room, and she kept saying that I couldn’t go on this boat ride, and that she was leaving earth at dawn. Both her weekday caregiver and I were awake from dawn on this morning. Mom is still here.
My love affair with Hospice is going through some relational issues right now. Our best guess is that, because of the C Diff, we are being passed from one to another. (I know that I can be “that-daughter” when it comes to my Mom’s needs not being met, but since I’ve been thrilled with Hospice, they haven’t seen that side of me, so I don’t think that’s it). The team that we were assigned to at the beginning are all new now. Two bath aides have backed out now, and the third bath aide came yesterday. We also got a new nurse manager, who returned from vacation yesterday and is new to Mom’s case. She arrived yesterday without reading any of the notes from the past week and a half, so I spent an hour trying to bring her “up to speed” on what has happened.
She is questioning continuing treatment. I am trying to honor what Mom told me she wanted to do. The new nurse manager suggested Home Health (even though antibiotic therapy is supposed to be considered part of comfort care). Home Health said Mom had used up her benefits back in March, and told me that I really needed Hospice. So, I’m feeling like we’re back in the gray zone here. I hope that will be resolved today. I requested a urinalysis and blood draw to check for UTI or dehydration, based on the change in Mom’s mental status.
We’ve been surrounded by love and support. An old friend of mine played piano and sang hymns for Mom last night for almost and hour. Our pastor and his wife came and prayed with her before bed last night.
I’m going to stop the photos each day. They’ve been good for me, but when I didn’t get one posted yesterday, I realized that they are becoming one more thing on my “to-do” list. I’ll post them from time to time, though.
Hope you are having a relatively “normal” caregiving day today!
My current “in-a-perfect-world” wish is that there was a team, like Hospice, that was there to support caregivers…whether or not we decided to fight our caree’s conditions aggressively, moderately, or at the end of life. Wouldn’t it be nice? Still would save Medicare many millions per year over nursing home costs and would provide us with the support and respite we need.
The photo was taken at Mom’s granddaughter’s wedding (my brother’s daughter) last summer.
Sharon said on July 13, 2011
What a beautiful picture! I hope all the glitches with Hospice will be ironed out.
I too wish for every caregiver and caree a team like Hospice that would be in place for every step of caregiving whether still fighting the disease or not.
Denise said on July 13, 2011
Hi-Whenever you can post an update and a photo is good for us! We know you have a ton going on and know that you share when you get that extra moment.
It sure did seem like something was going to happen at dawn, didn’t it? So interesting all that’s going on. I’m glad you tell us about it.
I, too, hope the glitches get worked out. It’s frustrating to have to repeat the updates to the new ones. I’m a little confused about the change in staff. Consistency is so helpful and so important!!!
Thinking of you.
Bette said on July 13, 2011
Hi Shandi,
I’m so glad you continue to be surrounded by family and friends.
I’m sorry that you needed to spend so much time updating the new nurse manager. To find people to help that you all feel comfortable with is difficult enough, without having to welcome another set of help. I’m so sorry.
You continue to be in my thoughts and prayers, I hope the transition to this new team is an easy one.
Chet said on July 13, 2011
You deserve an award for how great you are at managing your mother’s care.
Oh yes, a team! I remember how great hospice was when my grandfather was dying from cancer. When Debi had her first really bad spell I asked if hospice could help and was told that she had to be within 6 months of dying. I have recently been able to piece together a good support team between our long-term care case manager, local independence center, senior coalition (who does what they can even though she isn’t a senior), food pantry, CDASS care-giver, a local service organization and church. But it has taken a lot of work to get there, and it still isn’t nearly as good as a hospice team.
Unit Known as Shandi said on July 13, 2011
Chet,
Mom qualified for hospice because of all the infections she’s had this year, so that hasn’t been the issue. Frankly, I’m not really sure what it is. Something about being admitted right before the 4th of July weekend, but various people from hospice have admitted that there is fear of the C Diff diagnosis. I think that’s part of it. Her nurse manager is coming this afternoon (the new one that started yesterday and is now “up-to-speed” on the case), so I’m hoping to get some answers today.
Trish said on July 13, 2011
Shandi, You must be getting exhausted with everything going on. I’m glad you recognized posting pictures was one more thing on your to-do list and let that go (although the pictures have been great and love this one from today). Just do what you can and don’t worry about making us worry! I’m thinking of you and your family whether you’re posting or not. Take care and good luck with the new Hospice team.
Unit Known as Shandi said on July 13, 2011
The visit with the new nurse went better today. She’d just come off vacation yesterday, and I imagine that she was a little overwhelmed. Mom’s condition is complicated, and changed so quickly. Our church has started concocting wonderful things for Mom to eat (everything has to be very soft, and no dairy or protein yet) and dinners for us as well. What a blessing that is! They asked if they could help, and I told our pastor that if anyone could think up something soft that Mom would enjoy, it would be appreciated. They decided to fix us dinners as well.
The nurse did get the catheter urine sample (first try) and the blood draw (again, first try…not easy to do with Mom’s tiny veins and now dehydration). We’ll get a stool sample on Monday to see if her system is free of the C Diff and Camplyobactor. (2nd round of antibiotics are done on Saturday). Diahrrea has slowed down some. Mom eating and drinking small amounts, but very weak. Her BP is coming back up. She’s still hallucinating.
I think that’s about it. Good night, all!
Jennifer said on July 15, 2011
Wow, Shandi – isn’t it amazing all the things we can learn to do when love is the motivator? Yours is a real roller coaster ride!
The great sentence is ” I am trying to honor what Mom told me she wanted to do.” That you actually HAVE that information and continue to honor it is all the best you can do.
Years ago when I was co-caring for my then father-in-law, there were several days during which he had long visits with relatives and friends who had passed on. Moments before he died he exclaimed “Oh! Look at the beautiful crystal ship!” and there he went. (as a humorous note, he was most definitely NOT a Jim Morrison/Doors fan)
Keep doing what you know is right – because it is!