Mothering

Last Sunday was Mother's Day and the family was together again, minus a few grandchildren (Karalyn, Ben, Crystal, Jon). Mom tried to get to get up, but it was too challenging and she spent the day in reclined comfort while the rest of us roamed in and out of her room. She received lovely plants: a Sun Star from Bill and Pattie, a cactus garden from Tina and Mike, a Freesia from Pat, an African Violet from Aunt Dorothy, and a Gerbera Daisy arrangement from Tami and Dan. Her room is surrounded with life.

We had a nice buffet-style lunch of ham, pasta salad, deviled eggs, meatballs, and potato salad. Mom ate and drank little, but she had a some ham later in the day.

Hospice began services on Tuesday. They introduced themselves and discussed medications and respite services. It sounds like respite has to be pre-arranged way in advance and on a regular schedule because they use volunteers. This may not help Suzy much; we'll have to wait and see how it plays out. In the mean time, I'm looking at my calendar and planning for more days with Mom.

Mom is speaking more slowly and more shallowly, continuing to try to finish sentences. Sometimes she does. Last night I read to her from the devotional Bill and Pattie gave her for her birthday. The passage was from Peter 1:6-7. The author suggested that we receive trials and suffering as honored guests in our lives. I told Mom I thought that was an interesting way to look at it. She replied, "Yes, it certainly is. What I don't understand is...why am I like this?" It took five minutes for her to get the sentence out, but she did. When I asked her what she meant, she didn't remember. So we shared I love yous and hugged.

Wednesday was my birthday, and Mom sang to me over the phone. It went like this:
Happy birthday to you
Happy birthday to you
Happy birthday dear...
(to Suzy) ..who am I talking to again?
We all laughed. We're losing some things, but not our collective sense of humor.

Mom has become more tactile as her words have waned. She frequently examines the hem of her sheet, the fabric of her gown, touches my hair and caresses my arm as I feed her. When Suzy kissed her good night last night, Mom gave her five or six tender kisses on the cheek. She likes to hold hands. Even though she can't draw her thoughts together easily, she has no trouble saying, "I love you, Suzy." Her brain may fail her, but her soul still mothers us like she always has.

The Spoken Word

Before a word is on my tongue you know it completely, O Lord.
(Psalm 139:4)

The last couple weeks have flown by. It seems that every day has so much to tell that my mind and my fingers can't keep up.

Since Mom came home from the hospital her personality has been more evident. Included in the return of her personality is, of course, her humor, but also a little sadness and frustration. We've taken the frustration as a healthy sign that she is more in touch with reality. It's amazing even now how well she is holding up under the circumstances.

Last night Mom began her second round of cipro and flagyl since her return from the hospital. We're administering the cipro on the first signs of bladder pain, as the infection disease doctor instructed. It's working well. Michelle from Vital Care changed her catheter yesterday.

Mom's care is shifting from home nursing to hospice care. Beginning Tuesday, hospice will take over where Vital Care is leaving off. She will be discharged from physical therapy, but yesterday Wendy left Suzy with instructions for exercises Mom can do. We don't know yet whether she will still receive occupational therapy.

Mom's ability to communicate is becoming an increasing challenge. She knows what she wants to say, but she loses her words in early to mid sentence. Sometimes she'll drift into thought while she's trying to regain her words. Last Monday as she was drifting, I looked her in the eye with my eyebrows raised to signal I was listening, and she threw me back a cocky version of the same look. We both lost it!

I've been reading to Mom from the book of James. Last Sunday we got to chapter four and, since James was becoming increasingly serious, we decided to look for something a little more encouraging. I asked Mom if she'd like me to read Psalm 139. Her eyes widened and she said, "That's my favorite Psalm." So I read. When I finished, I told her the verse that stuck with me was the fourth, because God knows what she wants to say, even though we, and even she, may not know. She replied, "I didn't think of that. What's amazing to me is..."

The overriding theme at this time as always is God's grace in the midst of difficulty. Other than her bladder issues, Mom still has no pain. No pain. Dr. Galloway told her on Wednesday she was most amazed by this, because many of her patients experience pain. Although the time may come that Mom does experience pain, we are very grateful that she has had so much time without it.

I haven't taken any pictures recently, but below are a few from a couple weeks ago.

Watching Animal Planet at NMRH.
Receiving birthday card from grand-daughter Karalyn.Making churros with the family on 4/26. Paul is showing Mom his new antique book on world history, the Czech section.
Evan is slowly but surely turning Grandma into a gangster.

Where the Heart Is

Mom continues to improve at home.

On Tuesday evening she joined her weekly women's bible study at home. The bible study group has met over the last few months at Suzy's so that Mom can participate. Suzy told me that Mom was not only able to stay and listen but also to give input. This is a big deal, a big change.

Wednesday was Family Night at the church. She has been looking forward to attending. She did go, but it wasn't an easy event for her. The important thing is she tried, and it was the first social event outside the home she has attended in weeks.

PT, OT and Nursing came to visit on Thursday. Suzy said Mom was particularly slouchy. She tends to list to her right when sitting, laying, standing, but Thursday she was also leaning forward. The OT asked her to look her in they eye with the purpose of getting her to sit up straight. Mom stayed slumped in her Quasimodo position and looked up at her (makes me giggle just thinking about it - I wasn't there). Suzy told me she would have been frustrated if she were the OT, but the OT smiled, laughed and said, "You're so much fun!"

Which brings me to the best news...Mom's personality is increasingly returning. She has always been sweet, but she's been more compliant the last few weeks than she ever has in our experience. The Mom we grew up with always has a snappy come back that her audience may or may not get. She's always thinking of something smart to say, some way to twist the humor into a phrase or a word. That's the Mom we've been getting back.

No pictures this post. I'm about to hit the road. I'll try to give an update over the weekend.

Settling In

Mom has been home for four days and she's a little better every day. The c. diff. still keeps us hopping, but it's improving. Best of all, Mom's personality is coming back. We've missed her snarkiness these last few weeks.

Last weekend we kept it simple. We had beautiful weather, and we were able to enjoy it on the deck for a little while. The rest of the weekend we watched Red Skelton episodes, Going My Way, and Holiday Inn. I cried a couple times during Going My Way, especially at the part where Father Fitzgibbon is reunited with his mother. Mom said she almost cried once. I guess I'm sappier than she is.

Tina came up Sunday evening for a couple of hours. We looked at pictures and watched Mom's dvd family album. It was a fun visit.

Physical therapy came to visit on Monday and Mom did her exercises in bed. She hasn't been able to stand well, even with assistance, since she came home. But we're optimistic about the days ahead.

I didn't take pictures last weekend. I didn't really think about it in the midst of the movies, conversations and other business. But I do have a couple of pics from Mom's physical therapy appointment with Wendy before her last hospital stay. It's a great blessing for Mom to receive PT at home.

Birthday Party April 12

I'm heading back up north at 3:30 p.m. today, so I thought I'd send some of Mom's birthday pics while I have bandwidth on my side. We had a great time.

Jessy, Cody, and Tina holding Makayla.

Balloons gallore over Cameron, Tina, Makayla, Mike and Corey. Corey has been working on his PR skills with Makayla.

Dan center, with Makayla and Mike. Dan entertained us exotic sayings.

Present time! Mom donning new birthday scarves from Haley.

Mom, Olivia, Cameron and Jaime. Evan hiding in the rear.

Jodi helping Devon launch a rocket at Uncle Paul, Uncle Bill and Papa Mike.

Makayla takes after her mom.

Going Home

Dr. Galloway met with Mom and Suzy yesterday and spent an hour. We appreciate Dr. Galloway. She has always been candid with us, but also gentle and caring. Her mother has the same diagnosis as Mom; she has commented that their medical charts are nearly identical.

Mom is no longer a candidate for Tarceva. Although it is keeping the cancer in check, it is also the underlying cause of her repeated infections. Tarceva was her last line of chemo defense; there will be no more chemo for Mom.

We have known all along we would eventually receive this news. Attacking the cancer with radiation and chemo was the fight Mom chose. It has given her more time, and that is what she wanted. But as time becomes increasingly precious, the risks of the chemo on the quality of her time outweigh the benefits.

Suzy said Mom was quiet when Dr. Galloway gave her the news. When Suzy asked Mom how she felt about it, she said, "Well, so be it." Suzy gave her a hug. Later, she pointed to the nursing duty board and said to Suzy, "I have a message." You never know what you'll get from Mom these days when she points into the air with an announcement. But Suzy saw she was pointing at our addition to the board: Rose Mary needs nine hugs every day - basic maintenance. Consequently, Mom has chosen her new line of defense.

Mom will be discharged at noon today. We don't have details yet regarding her physical therapy and treatment. We do know that she will be able to receive IV medications at home, which will help us avoid hospital visits. She has been looking forward to sleeping in her own bed, and so have we. Thanks for your prayers.

Tax Day

On Tuesday morning, Suzy and I walked into Mom's hospital room thinking we would stay with her long enough to visit with Tina, Bill and Pattie, then go mail Mom's tax forms. We discovered upon arrival that she had been put back on a clear liquid diet. We asked why, and the nursing staff didn't know; just that the doctor who had seen her before we arrived had ordered it. When we pressed for the reason, the nurse contacted the doctor. Turns out that the doctor felt she might be confused and unable to swallow safely. She was immediately returned to her unrestricted diet.

Throughout the day, as Suzy asked questions regarding Mom's treatment, she was met with defensiveness from the nursing staff. Mom was given a rectal catheter on Monday night per doctor's orders (we were in agreement to this) in order to prevent another c. diff. rash. She repeatedly lost the catheter. After the third time, a nursing staff from ICU with experience in this area came to reinsert it. The pain of insertion each time was excruciating for Mom, and this time the catheter came out immediately. The nurse then told us that Mom's rectal sphincters were not tone enough to retain it. By this time, Mom had already begun to develop a rash. Now, she had the rash and an irritated colon and rectum to deal with as well. No more rectal catheter.

An infectious disease doctor visited us on Tuesday. He recommended treating future urinary tract infections with a dose of antibiotics and a prophylactic dose of Flagyl. This way, the treatment of the UTI would not trigger the c. diff. infection, and we would avoid the problem of creating a resistant strain through repeated antibiotic dosing. It makes sense to us. But first we need to get rid of the current problem and get her home.

Mom's spirits are good, in spite of it all. Her cancer is still stable, and she is comfortable except for the c. diff. issues. Dr. Paz recommended a yogurt shake twice a day to encourage growth of the good flora in her colon. Suzy has acidophilus at home to maintain them.

Suzy is meeting with Mom's oncologist tonight. Hopefully they will be able to determine when Mom will be able to come home and how we can help prevent future hospital visits. Please pray that our communication with health care workers regarding Mom's care becomes easier and that they will be able to hear us. I'll try to post again tonight.