Tuesday, June 29, 2010

As life cascades around me, someone's got my back.

This week I am trying to take some time off and mentally get a break.
I don't think that is possible.
My friend Marti came in town last night to get a break from her current parent-care time-of-life.
Her mom is in hospice care and has been for over a year. It is grueling and her mother-in-law is also beginning to greatly decline in health. She needs a break! We are going to try to veg and laugh and cry and let down.

Burning Question Today: What do I do as far as the tension between hospice philosophy and the nursing home philosophy?!?!?
It is hard enough to emotionally go through this, and to physically and mentally always be on top of my mom's  needs and her care.
However, recently, because she wants to stay in bed and is getting weaker and less responsive (sleeping lots more and as of yesterday her speech was somewhat slurred.) I am being asked by the staff at the facility "Why doesn't your mom get out of the bed?" "Why doesn't she get up. I hate to see someone give up on life."
These are a couple of examples of what I am asked just as I arrive at times.
This is an added stress to my sister and me and layers one more opportunity for the question "Am I doing what's right and best for my mom?" to pop up over and over.

The hard truth is my mom is dying.
The harder truth is, she's going slowly in increments and is so tired it is unreal she is still going.
I guess what I am saying is, "Why are you all adding to the difficulty of this situation, why are you not supporting her and us, her family?"

Anyway, I'm calling our hospice provider in a moment to ask them to help advocate more pro-actively on my mom's behalf and our behalf. I do not want to make enemies at the nursing home, that will not help my mom, but they are not on the same page as her, and us, and the hospice caregivers and they need to be!

I feel inadequate to undertake this responsibility. I know I will not do it perfect, I just want to do it well and in that love and honor my mom...she deserves that ...from all of us.

How do I take some time off and get a break? God will provide, He has been this entire time. Jehovah Jireh!
In the midst of all of this, I amazingly have a deep and abiding peace. That is NOT from me, it's all Him!!

Thursday, June 24, 2010


Have I told you to talk about my adopted sisters? For 20 some odd years we've ventured out together on so many adventures and mishaps and had laughs and tears and grown together and I thank God for each of them and their embracing me into their family!!
The Shuler girls (I hope I spelled this right after all these years!!)

Marti, who I have known since we were backyard neighbors and our kids were little.

Then there's Chris and Terri...My older sisters:)

We've taken so many trips to the mountains of Colorado, as well as Arizona, and Arkansas.

Marti and Me looking out over Sedona on the red rocks

Doing one of our favorite things...hiking, or actually resting during a hike.

I LOVE my sistas!!!!

And I love my real-life Sister!!!

Is it Thursday??

Wow! The week is flying by!
Yesterday was a real mix of things.
I spent time with my sweet friend Jill and her beautiful baby girl, Emma for a few hour brunch. So fun!

Then I was pretty much on the phone non-stop.
We are at the front end of considering possibly moving our mom into a hospice house. It is a very nice-looking, clean, relatively newly constructed facility on pretty grounds. I have several friends that highly recommended it. Really after meeting with the social worker the ball is in their court as they get my mom's health info from her present hospice and determine if she is even eligible to move there.
If so, then we have to decide if it's a good idea or not and talk to her about it.

My Mom's Full Day:
She started her eventful day with a less-than-thrilling visit with a podiatrist. Wow! Exciting!

My friend Maddie  then stopped in to see her for a time and then came by our house and dropped off a book and some notes she had written during her time as a companion with my mom and their conversations last year. She has been such a blessing to my mom and evidently my mom has touched her heart as well.
Thank you Maddie!!!

Later in the afternoon just after visiting the hospice house, I got a call from our present hospice social worker that she had stopped in to see my mom and a visitor showed up. It was a childhood friend of my mom's who is 90 and lives near their hometown 200 miles from here. They rode horses together and graduated from high school together! Amazing! She was on her way back from out of state attending someone's 50th anniversary when her relative who was driving her decided to return to her home via St Louis. She said she wouldn't feel right driving through St Louis and not trying to see Fae. So they did and what a treat.

Our Hospice Social Worker Keil Sent this to me. Priceless!!!

A little later one of her best friends from the apartments she lived in there on the grounds stopped in for a visit and she really enjoyed that.

Wow! And I was feeling bad that I was taking a day off and not going to get by to see her. She did fine without me thank you very much. Thank you Lord!

I feel that these visits are "loose ends" sort of getting tied up and yet I dare not try to guess if Mama is close to the end, she has fooled us before much to her frustration:)
I spoke fr a while with her doc last night and he said her ongoing end of life phase has "more twist and turns than an O'Henry story"! He also quoted Mark Twain saying, "The rumors of your mom's death are greatly exaggerated!"
As far as those loose ends the only person that she has expressed a desire to see is my brother and for whatever reason he has not come in. That is very hard for my sister and I, but he knows her situation and that she has said she'd like to see him. We cannot control that... it's between him and God.

The End of My Full Day:
My one disappointment yesterday was that I postponed a 3 hour photography class I had signed up to go to last evening. I just wasn't up to rushing home, gathering my camera gear and going to sit and absorb all the information at this point. Jodie of Fresh Art Photography was offering the class and was very understanding. Thank you Jodie! Check out their website.  http://www.freshartphotography.com/

However, as it turned out, our long time friend, Michael Smith came in town to see his dad and ended up staying with us last night and tonight. It was fun seeing him and catching up some.
Fred and I made a yummy meal for us of grilled scallops, mushrooms, and asparagus and our fave summer salad, tomatoes, mozzarella and fresh basil form our deck pots
The boys sat on the front porch smokin' cigars and sipping a cold one.
I went to bed and to sleep...

Monday, June 21, 2010

The Longest Day of the Year

June 21st. The summer solstice. Hmmmm
I figured out that yesterday I wanted to run away and was mad at everybody and anybody.
Today I worked in the yard like a fiend in the morning half of the day. I just kept pushing myself. In some weird way it felt cleansing and good. Then I quit before I heat stroked.
I got cleaned up, met Fred for lunch and ran an errand.

Then I went to Ted Drewes and got a treat for my mom to stimulate her appetite.
She did eat a third of the mini concrete I got her, but mostly slept.

I took pictures of the view from her bed/window and the bird-feeders I put out for her to watch and I read.

Sweet Mama watching the birds.

This is the view out of her window.

I had a meltdown in the hall outside her room and cried on Tanita's shoulder as she hugged me. Tanita is our angel caregiver. There are several, but she is special in our hearts forever.

Tanita came in to help me change her nightgown and some bedding. While we were readjusting her bed position my mom had what was most likely a petite mal seizure.
As Tanita ran to get a nurse I stood there next to her bed horrified. It stopped and I asked my mom, "Are you okay?"
In an uncharacteristically high voice she said "I was trying to do something, but I couldn't." She said it a couple of times.
Then everyone got there and started checking for signs of a stroke and checked her over carefully.
The supervisor nurse told me that it was probably a petite mal seizure, including the high voice thing afterwards. My mom didn't remember any of it, but asked, "Was I out of it for a while?" Then said she wished she would've gone home to the Lord then.
As she dozed again THEN I thought to pray!

I stayed around until my sister got off work and once she got there I left.

I am so sad and lost in what to do or say or how to behave in all of this
I do not have a manual or any innate wisdom and at times I am very, very scared.
I think that is probably normal though.

I've always felt like our culture doesn't do a good job of helping young mothers-to-be understand the power and the natural progression of childbirth and then practical facts about the nursing/breast feeding experience. All very natural and beautiful yet at times hard and they take time and work.

Well, I think it's the same with death. We've spent so much time avoiding it and trying to stave it off and stay "forever young" that it is looked upon as the great intruder and not at all as a natural and at times beautiful part of life. We also do not talk about the pain of it very much and the fact that it is an affront to God's plan for life eternal, the result of sin and a fallen world. Rage against it is totally okay and to be expected.

So, I wrestle with all of this and pray that God soon sets my mom free. She is in no pain, she is just so tired and ready.
I trust Him in all of this, but I'm just venting...It's hard to watch someone you love struggle knowing that they are waiting and hoping their next breath is the last one.

A Full Sunday

So this was Father's Day 2010:
Got up and had our quiet time.

Went to breakfast with the Clower family to celebrate the day. Sweet!

Came home and got myself together to go to my mom's for "just a bit" :)

Had a short, but intense fight with the father of my children :(
Peeled out of our carport and down our street. Haven't done that for a while and was glad I came to my senses on Edgar Road before I drove past not one, but two police cruisers.

Stopped in at Porters and got some fried chicken to take to my mom to try to get her to eat.
Cried some more.

Got to the residential care facility (that would be the nursing home) .
Cried some more. Called Fred and we talked some. And both apologized.
Cried some more.

Went in and my sister and I got my mom to eat a few bites of the chicken and a few bites of the cole slaw and some Coke, "the real thing".
Talked and watched her drift in and out. She stayed in bed all day and in night gown without makeup as she did both on Thursday and Saturday.

Jessi called from Colorado and her and GMaMa talked for a bit, but GMaMa started sort of falling asleep on the phone. It was a good connection-time for my mom and our sweet girl who I know feels so removed from family and all of this at this time. You are very much here with us and in our hearts and thoughts ALL THE TIME J!

My mom and Erin on Mothers Day this year.

Erin came by for a bit and they talked and hugged and loved on one another.
Erin got teary-eyed, so did I. There is a special connection between those two that is so sweet. I walked her out and stood outside in the St. Louis heat wave and talked for a moment.

Went back in and Fred came by after having spent some time with his folks and he and Vicki, my sis, and my mom and I talked. 

Vicki left and shortly after that Josh and Missy and the kiddos came.
Although my mom really didn't fully engage in all the chaos and activity that ensued once they arrived I noticed her EATING HER DINNER that had been brought in just before they arrived. And I had worried that they might distract her from eating.
She ate more than she had in days, not a lot, but definitely more!
She stayed awake the whole time they were there.

The Lang 4 left after a good visit and the kids got to eat a a large yummy chocolate chip cookie that was part of GMaMa's dinner and I am forever grateful that they came and spent time with her!!! The buzz of life was palpable and the staff could not quit talking about our beautiful grandchildren!  It was like a burst of adrenalin for my mom evidently. God bless Josh and Missy and two extremely active, full-of-life children!

When Fred and I left she was sitting up and acted as if she was going to read her paper.
Another up and down day in the life of Fae and her family! Thank you God for every confusing moment of this wild ride.

Will post photos when I figure out how to get them and get some from my sis that she took yesterday on her camera.

Saturday, June 19, 2010

Holding Loosely to Life and Expectations

My mom is trying to leave this world and join the Lord and my dad and countless others, but God seems to be holding her here for some reason that will very probably remain unknown to us on this side of eternity.

She is tired and breathing has become more of an effort and she sleeps more, yet her mind is lucid and her humor intact. Hospice and her caregivers at the home she is now in are all taking care to see that she is comfortable and treated with as much dignity as possible.

Fred and I returned a day early from our vacation because we got a call from the nurse from the facility that she had taken a turn for the worse and the hospice nurse came and saw her and told us "Probably sometime this weekend". I cried and drove and had Fed text people to pray as we traversed miles of beautiful Arkansas and Missouri roads. It was a bittersweet ride home. I was driving because on hilly, winding roads I get motion-sick and it is not pretty. Fred was quite happy to relieve me when we got to I-44.

I spent Thursday evening with my sister and her. Then she told us to go home. She had been in bed all day, with labored breathing, barely eating or drinking, and sleeping for the most part. Fred came by to see her, Erin got by earlier in the day, and one of my sister's sons had come by. We both sort of thought we'd  get a call in the night.

No call. I arrived yesterday morning and she was dressed and sitting in her wheelchair visiting with the hospice chaplain!!! My emoter meter was flying all over the place. My words upon seeing her were at best ungracious. "You're up and dressed? You've put makeup on?!? What is going on?!?"  I do believe the look on the chaplain's face was thinly disguised horror at my greeting. I then hugged her and sort of apologized for my greeting, but explained we had come home a day early the day before.

My sister's response was similar when I called her and relayed the news to her. I had to hold the phone away from my ear for a bit as she absorbed and processed the info.

We both stayed there for a bit, took her to lunch in the dining room along with the hospice aide, visited with her there, and then told the hospice aide so long. We took her outside so she could feel just how stifling the heat was and she quickly wanted to go back inside and then wanted to lie down.

Josh came by and surprised her as she rested in her bed and it was a very sweet time with him and her and me and my sis. We watched the bird-feeders I placed  outside of the window and talked and even watched the drama of a young hawk capturing a sparrow and sitting on the grass with him for a bit trying to figure out how to grasp well enough so he could fly off with it. He finally figured it out. She could not see this drama, but enjoyed our account of it as it unfolded.

By the time we left she was getting ready to eat dinner in bed and was extremely tired.

Up and down that is what this season looks like and I wrestle with myriads of conflicting feelings.

This is what my sweet friend told me that is going through the exact same scenario with her mom.
"Take advantage of every moment she 'rallys' and know you won't regret those times when she was up in her chair and could go on a walk with you or look at other things and talk about them or just sit together. These are all memories you'll never regret having made together."

Anyone who knows me or has read an earlier posting in this blog knows that this season of my mom's life has been used by God to create a new and amazing relationship with her. He miraculously softened my heart towards her and I quit waiting for her to soften towards me and she has responded by becoming the affectionate mom I always craved and never had!!! I have received more hugs and kisses and " I love you"s than I have in all the prior years! At first it felt awkward and a little uncomfortable. Now it is a gift every time we see each other. The response of a heart to grace extended is a powerful thing to behold! I feel that I have trodden on holy ground.

So, I am realizing that this timing thing as far as slipping from this life into the next is best left to God and I need to hold loosely to my expectations and hold  her and others I love closely for the remaining time we have here together. The greatest gifts God is giving me out of this hard time is a redeemed mother/daughter relationship and NO REGRETS!

Thursday, June 10, 2010

A Morning @ Nonna and Poppi's

So this was the most painful photo editing I have ever done. My program or my computer or maybe just me kept getting everything ready to download onto our computer and then it all would go away. Third time is the charm!!!
We had the grandbabes here for a few hours yesterday to relieve Kalie and Gracie from childcare duties while Mama and Daddy were out of town.
It was exhausting and fun and chaotic. About the way I remember my life as the mom of our three kids when they were all 5 and under!
I played around with my camera and tried to be brave and try different things and some of it actually paid off.

It was a peaceful morning. And then...

He is soooo active now!!!!

Dress up and making "music".

Belle only seemed to know one note...


The many faces of Teddy

The many faces of Princess Belle

My favorite guy...The Beast (actually I was the Beast in this day's Beauty and the Beast.)

I know I can get this up and runnin', THERE!

Hey!!!  Whattha?!?!

Sweet girl, sweet music in our lives

WATER!!! ICE!!!!

Teddy entertaining himself and being foiled by the rubber band lock!

Boy in a blue tub...sweet!

Getting Tired...

The little welt on Teddy's forehead was from him crawling repeatedly into the guest room closet mirror doors and laughing each time. We don't need toys!!!

A lovely day and they had as much fun as we did...I think.