Rollercoaster

I like rollercoasters. I like the anticipation, the thrill, the surprise, the speed, the drops, the fun jumbled-up feeling. I like tumbling out at the end, laughing with my friends (and that includes any willing children of mine), and running around to do it all again. It's exciting and invigorating and, well, fun.

This rollercoaster is not fun. I don't like anything about it. It is exciting, but in a bad way. It is not invigorating. It wears me out. It wears us all out.

Dad is weaker again. He is not walking today. He has lost most of the function in his right hand. His left eye is still not cooperating. He is wheezy again. Mealtime is taking longer and longer. Loren said about two hours for lunch today. The body fluids are really collecting and it looks so uncomfortable. Of course, he does not complain.

I don't want to ride the rollercoaster anymore.

P.S.--Loren texted Sunday morning to say Dad was feeling better. I asked if he was really better or just saying his line, "I'm much better today." Loren said he was really better, walking around and lucid. I guess my dad likes rollercoasters too.

TMI

I am thankful that as Dad wanders in and out mentally, he does so sweetly for the most part. You read about people who get cranky or mean or aggressive as dementia sets in; so far that has not been our experience. It is interesting to hear what comes out as his memories and thoughts get jumbled.

I confided in Loren some time ago that Dad had told me about his wedding night. (Lalalalalalalala) Loren told me he had heard the same story. We both agreed to wipe it from our memories. Some things you just don't want to hear about! Then Loren texted me today:

Dad is walkin good but mentally in and out...i narrowly escaped a weddin night story...i had my radio in 1 ear and was able to get the other ear in and the volume on high...the last thing i heard was the motel in topeka...20 minutes later i took the earpiece out and dad was wrapping it up...saying and that is the 5 steps to a successful marriage

Oh my gosh! I laughed so loud and hard! Ev kept asking what was so funny, but I couldn't tell her. That is by far the funniest text I have ever received.

Here's a picture of Loren in his position on the couch. Just so you can get a good visual. (I'm still laughing.)

Vacation, All I Ever Wanted

(All expense paid vacation to the folks' house if you can name that song and the band who made it famous.)

Dave has two weeks' vacation. We have no money and no where to go. We thought about camping in the hill country and floating down the river, but the river is extremely low. I have students, the kids have parties and plans. I told Dave that it is a vacation for me just to sit in bed and read. We have plenty of projects to work on at the house and have already made the obligatory trip to Home Depot. We have resigned ourselves to a poor man's vacation at home.

Loren and Mom, however, are having a hard time with it. They insist we go to the river or the beach. Mom even called to tell me to go away. Karis called Mom to say she really wanted to come over, but Mom told her she would call back to tell her when a good time would be. No call back. We were not welcome to come clean and mow on Tuesday.

Finally, Tuesday night I texted Loren.

Gwen: We are having a great time here at the river.

Loren: What river?

Gwen: Which one do you want me to be at?

Loren: Are you funnin me girl

Gwen: I just want my family to have a vacation you and mama can feel good about.

Loren: I feel very good right now cause you are makin me laugh...regardless of what river you are at

Gwen: I'm thinking whiskey river would be best.

(Upgrade to first class if you can name the artist for that last musical reference.)

So, my current plan is to stay away and not call until Monday. Maybe that will satisfy the Vacation Gods.

Visitors

Mom and Dad have been having some visitors lately. I have come to believe that end-of-life visitors fall into two categories:

1) Those Who Come to Give, and

2) Those Who Come to Get.

I know nothing is all that cut and dried, but in general terms this is my observation so far.

After one such visit, I shook my head and wondered aloud, "Why in the world did those people come by?" They came in their fancy car, dumped their personal tales of woe on my unsuspecting parents, stayed too long, sucked all the air right out of the room before they finally left. My dad apologized that he just couldn't stay awake for their visit. Who would want to? What the heck? After we bounced a few ideas around, Ruth posited that this particular couple just needed to come for their own benefit. I think she's right.

On the other hand, I also witnessed a lovely visit from a child of a long-ago friend of my parents. Charlie is my age, was a good friend of my brother, is single. Not the most likely of visitors to a pair of ailing octogenarians to whom he is not related. Charlie arrived with a simple hearty dinner he had cooked, as well as jars of produce he had grown and canned. He sat and visited quietly with my parents. Loren said he stayed for dinner, then left soon afterwards. A total gentleman, oozing care and respect for my parents. He came to give. And our lives are better for it.

Oh, another funny note about the unpleasant visit. After the visitors left, I noticed Dad didn't have his hearing aids in. I'm sure it was much better that way!

Thank You, Sister

I took Ruth to the airport today. She stayed for a week and somehow finagled her way into Mom's Inner Sanctum, the kitchen. Ruth cooked, stocked the freezer, and washed dishes. I am not exaggerating when I tell you that I could count on one hand the number of times I have been allowed to cook or wash in my mom's kitchen. This was quite a feat on Ruth's part and I know it was a big help to Mom. I even witnessed Mom sitting down and reading!

Ruth also managed to feed not only the body, but the soul. She brought her violin and played tirelessly at Mom's request. Arkansas Traveler, Orange Blossom Special, Handel, hymns, the girl has no end to her repertoire. Bravo, Ruthie, bravo.




Maybe you can work up a little Pink Floyd for next time. ;)

And Then

Dad walked from his chair in the den to the study. There is just no figuring.

Ev and I arrived in time this afternoon to see Dad walking down the hallway again. He is quite a sight. The double vision never went away today, so Dad is opening his eyes super wide, trying to focus. His left eye is clearly the cause of the trouble, sort of drifting in towards his nose. A little bit Marty Feldman. A little bit frightening.

Dad is much more alert today. Not making sense all the time, but staying awake more. Loren said he slept the whole night through last night.

Go figure.

Grim

So that's how I'm feeling today: Grim.

Dave has a couple of weeks off starting Monday and we are tossing around ideas of what to do with our kids. I told him I wished we had someone to vacation with us because I just don't feel very fun. He teased me that he had noticed I wasn't my usual jovial, joke-telling self. Okay, so I realize I'm not ever Jim Carrey. But I do usually find some fun in whatever I do. I'm just not feeling it this time.

Dad, however, is feeling very upbeat. Here's a text from Loren today:

Good mornin everbody. we are up and at em again...dad slept well, woke up in a great mood, very little energy, and he has double vision...he woke up with it yesterday and it went away after a couple of hours...dad says tell the folks im feelin better every day...

I asked Loren if he thinks Dad thinks he is really getting better. He replied:

No he is getting worse but i swear i love his attitude

Yesterday Loren and I were talking about Dad's strength. I was wrongly equating it with his effort. Loren pointed out that Dad is exerting tremendous effort; there is just little strength left. After I saw Loren move Dad from his wheelchair to his chair following lunch, I told Loren that his last act before leaving town must be to move Dad into his hospital bed. Dad is about 6'2" and 200 pounds. No one else can move that big man like Loren does.

I hate to think of my dad stuck in a hospital bed.

Grim.

Well, now, my dear sister's comment has made me think of this song. Perfect remedy for a grim spirit.

Another Change

Yesterday morning, the kids all went over to the folks' with me. We did our blitzkrieg thing where Nate mows, the girls and I clean, and everyone sort of generally does whatever Gma asks. My personal favorite is when my mom has my kids out there with the hand-held clippers, trimming the edges like Chuck Norris.

Usually, Dad loves having the children over. Even if he is not interactive, he enjoys the life they bring. Not yesterday. At one point in the morning, Dad asked Ruth to take him back to his bed. He wanted to nap and felt there was too much commotion in his house. I know this is another sign of Dad shutting down. And I don't think I'm taking it personally. It's just sad.

Changing of the Guard

Bill left this morning to drive home. He made it safely. Endless thanks for the gentle care he gave to Mom and Dad and Aunt Helen. What would we have done without him? I will miss my big brother.

Ruth and I filled in today. I took over a box filled with pictures and letters from Mom and Dad's 50th anniversary surprise party. It only took me 12 years, but Ruth and Ev helped me finish a scrapbook of the event while we sat with Dad. Dad and Mom both enjoyed looking at memories from happier days.

Loren flew in this evening. He made it safely. Mom and Dad are happy to have him back. I'm sorry he had to return so soon. This is not a happy trip. For the first time, Loren is not coming to help Dad get back on his feet. Now we are just trying to ease Dad down gently.

Places I Never Thought I'd Go

This morning I went to the funeral home to check on Mom and Dad's arrangements. According to pattern, Dad has provided well. Everything is set up and paid for. Bless you, Dad. I answered a lot of detail questions, but not without a lot of texting to Bill. I mean, do you know the name of the town your parents were born in? Now I just have to find Dad's discharge papers from the service, circa WWII. Sure thing.

Today the hospice nurse came by to check on Dad. He was happy to see her and told her he was "much improved". She asked him what was improved and he told her he was "walking better". Um, no. A hospice aide came by later and gave Dad a bed bath. I guess he was too tired for a stand-up shower.

I couldn't remember what our doctor had told the nurse to admit Dad to hospice under. The official names are:

*Coronary Artery Disease

*Sick Sinus--the heart not working right

*Immune Disorder--keeps getting sick

Music to Soothe the Savage Beast

What does it say about me that the sadder and harder life gets, the music I most want to listen to is alt rock? I dunno. But here is Eddie Vedder to explain.

Tender Care

Last night after my brother wrestled my father into bed, he sent this text.

Made it to old bed! no bm so far. little more strength than last night but more wheezn. takes a pretty strong effort n mom gets excited. i rubbed his legs n side extra n told him i loved him n all of us r thankful 4 him. will see what the next hours have!

Oh my goodness. That text made me teary last night and I'm teary again as I type it out. I am so thankful for the tender care my big brother is giving to our dad in his decline.

Changes

I cannot believe how quickly things have changed for Dad this week. He can hardly stand long enough to transfer from his wheelchair to his red chair. Everyday activities consume all his strength and some are beyond his limits. He is very quiet and increasingly in and out mentally. He uses his whole stomach to breathe. He sleeps a lot.

Bill and I took Dad to see his cardiologist yesterday. Dr. Nish has taken care of Dad's heart since his quadruple bypass in 1989. He gave us a few tips for Dad's current condition, but made it clear that Dad's accumulating fluid in dependent areas is just not fixable. He emphasized keeping Dad comfortable.

This morning we switched Dad over to hospice care. We feel like this is a very good fit for Dad's current condition and needs. This afternoon, hospice had medical company deliver to the house:

*an extra long hospital bed
*a bed tray
*a hoist
*an oxygen concentrator
*oxygen tanks for emergencies

A real change in the decor for mom! Dad does not need oxygen yet, but I can see that day coming soon. I appreciate hospice' prompt response and even anticipating what Dad might need in the near future. We've never done this before and the changes are bewildering. It is nice to have someone come alongside.

The Last Palaver

Today, the sisters said good-bye. Not very sweetly, not very well, not the way they had imagined, but they said good-bye. Life isn't always what we want. It is what it is.



Postscript: Aunt Helen called Saturday morning to talk with Mom. Helen thoroughly enjoyed her time here in Texas and is ready for another visit! Mom talked sweetly and happily with her sister for some time on the phone.

Just In Case We Didn't Have Something To Do

Tomorrow is Aunt Helen's departure day. She has been looking forward to going back to her little house in Colorado. Mom and I will take her to the airport in the early afternoon, walk her to the gate, and hope for the best. One of the girls suggested writing Aunt Helen a card that says: I am flying on a plane to Denver. Not a bad idea, really.

Today when the new home health company nurse was interviewing Mom and Dad, she noticed that Dad has a lot of pooled fluid in his arms, hands, legs, and feet. I had thought it was just swelling or puffiness. The nurse suggested Dad see his cardiologist. I got on the phone and wonder of wonders, we have an appointment at 10:00 tomorrow morning! This is really a relief since we cannot get in with the pulmonologist until July 20th.

Also tomorrow, Ev will attend her last session of Pioneer Days Camp, Nate will go to a birthday party complete with Astros ballgame, Dave and Karis will go to a wedding rehearsal and dinner, Karis will babysit for the afterparty, and poor Meg has no plans at all. I'm looking forward to coming home and vegging out in front of the t.v. tomorrow night. I've already got a nice Shiner Bock waiting in the fridge.

You Might Have Aging Parents If...

your phone spells DNR.

*sigh*

There has been some disagreement among siblings as to Dad's wishes concerning medical intervention. Mom has been very clear about her desires, but we felt we needed to hear a definitive statement from Dad. Last night, our dear doctor came by the house. He talked with Dad about his recurrent pneumonia and different treatment options. Bill and I expressed our desire to honor Dad's wishes, not our own or anyone else's. This decision is Dad's.

Here is what Dad articulated at the end of the discussion:

"I do not want to extend my life. If the Lord calls me home, I want to say, 'Yes, Lord.'"

Gwen: "Is that your final answer?"

Dad: (smiles) "Yes."

Respite Care

Aunt Helen and Mom had a falling out last night over something irrational imagined on Aunt Helen's part. Brother Bill, who has a few years of experience caring for his stepmom-in-law with alzheimers, said this is not surprising. He also said it would be super helpful at this point to have fresh faces to help with Aunt Helen.

So, tonight, Meg and Ev spent five hours at the folks'. Karis had the wonderful idea for Meg to bring along a bunny she is taking care of for a friend this week. Aunt Helen loved "the kitty" and was sorry when the girls had to leave. Meg, Ev, and the bunny were exhausted, but Bill said it was like "a vacation" for him and the folks. Which I suppose is what respite care is intended to be.

Aunt Helen and "Tabby the Kitty", aka Georgie the Bunny.

Definition of Tough

This is how Chuck Norris edges his lawn.

Practice Run?

I guess I got to appease my bad bad daughter feelings yesterday. Dad began another of his now-familiar downhill slides complete with chills, shaking, weakness and lapsing lucidity. I contacted siblings to let them know this could be it. Dave took over at our house so I could head to the folks. I spent the night on the folks' couch in case there was a crisis in the night. And...Dad got better. :)

Here he is this morning with Bill after a lap around the driveway.




Pretty amazing! Dad is still very weak. Bill has to haul him up instead of Dad standing up on his own. In fact, shortly after I took that pic, Bill fetched the wheelchair to bring Dad back inside. Dad still wants to get up, walk, talks about riding the bike, etc., but the fact is he has no stamina. His blood pressure gets low. His hands and feet/legs are swollen. He is spending most of his time sleeping and even when eating he is very quiet, as if it takes all he has just to carry out basic functions. Just looking at him, you would think he is not long for this world, but Dad has an amazingly strong will. There is no predicting with this man!

I think yesterday was like a trial run for all of us. We got to process emotions, see each other's reactions (good, bad, and ugly), and really think hard about the details of "What if...?" I am thankful for my brother staying here with the folks. I am thankful for my supportive family. I am thankful I can be here. I came home this afternoon with a splitting, gut-wrenching stress headache.

We'll see what tomorrow holds.

(Don't want to leave out the sisters. Here is their shot from this morning.)

The Table Already Set

Aunt Helen is a published author. Her childhood memoir, One Time Upon the Upper McDowell, is an interesting read about growing up on a farm in Kansas during the Depression.

During this visit, Mom pulled out some packets that Aunt Helen sent her about ten years ago. They are short stories and poems, handwritten on cardstock, and stored in handmade cloth envelopes. With permission, I'm making copies for myself and my siblings. I think Aunt Helen's daughters should present these writings to Aunt Helen's publisher. They are treasures.

Here's a sample.

The Table Already Set

There were no hugs or kisses
But, the table was already set.

I don't remember Mama greeting, "I
love you dear children."
But, the table was already set.

Covered soft and smooth with bleached
flour sacks feather stitched together,
blue teapot and cups embroidered....

The big round table
the table of promise
where we each had our place

Grandma, Mama, the girl who stayed,
Bud, Bill, Tootsie and me, --yet,
room enough for the hermit on yonder
hill prone to wander at supper time....

Papa looked down from his picture
on the wall.

We came to the table alread set.

A time to tell
A time to listen
A time to laugh
A time to remind us who we were

Under the mellow glow from the
amber glass beaded shade above

We asked for a blessing
gave thanks for food enough

Now, I understand

Love set the table.
Love seasoned the cabbage soup.

Bad Bad Daughter

I could have gone over to visit the folks today. I could have. But I didn't.

I

just

didn't

want

to.

Bill said Dad had "smoker's cough" in the night and seems a little out of it today. Weaker and wheezy, balance off, stumbling too. My thought is these could all be symptoms of the pneumonia progressing.

I am trying to talk Mom into letting me pick her and Aunt Helen up tomorrow afternoon and take them to the church picnic. I think Aunt Helen would enjoy the action and attention. I think Mom would enjoy the farm where the picnic is being held. We'll see if Mom can overcome her anti-social tendencies enough to go.

Oh Dear

The x-ray did show something on Dad's right lung. [Editing to add: It's pneumonia. Bill didn't know how to spell it so he didn't type it in his text.] I'm bummed but not surprised. The wheezing just didn't sound good. Ves is referring Dad to a pulmonologist. Bill says Mom is upset and wants to talk about this, so I'm going over in a little bit. I'm sure it is frustrating and frightening. Mom wants Dad to get better so things can go back to the way they were before. Unfortunately, things just keep falling apart.

"Denial is when we tell ourselves that the situation is temporary, that it will soon be resolved. What we're denying is our parents' inevitable decline and a future where they'll need ongoing, permanent help. Maybe we can make the present situation more stable, but if we think about it, we know in our hearts that this is just the beginning. The situation today is about as good as it's ever going to be." Eleanor Cade

The kids and I went over this morning to help out. Mom let us vacuum, dust, clean bathrooms, launder towels and sheets, wash dishes, fill pill boxes, and help with baking. Nate sweetly sat at the piano with Aunt Helen and "played" with her. (Nate has never played the piano.) The girls and I "sang" along. The Von Trapp Family we are not! But it pleased Aunt Helen immensely and kept her occupied for a good while.

Earlier this week, we took Mom some blueberry muffins. She loved them. Today we took over a vegetable tian. She was excited about having it for dinner. I am excited that Mom is accepting food from us. The kitchen is her domain and she will give up cooking when we pry the spatula out of her cold, dead hand. I'm just glad we can give a little help. Help is good.

Postscript: Mom did not seem upset or worried at all. I did talk to Bill about the possibility of Dad going downhill fast. He sounds ready to honor Dad's wishes, whatever they may be.

Caregiver News

Sister Ruth is coming July 11 to care for Mom and Dad for a couple of weeks. Yea, Ruthie!

Doctor Visit

Bill and I took Dad to see Dr. Ves yesterday. Dad had wanted an appointment to see about his cough. Bill and I wanted to find out about Dad's wheezing and wretched sleep pattern. Ves has recently moved his practice, leaving the big conglomerate and starting up with a long-time colleague. Medical records haven't caught up with the move yet, so Dad had to fill out new patient paperwork, which was interesting. Then we had to wait about an hour, which was tiring. But I did have a nice visit with my oldest brother. :)

Cough--Ves recommended Dad take Pepcid as suggested by the hospital treatment team. There is such a thing as "reflux cough".

Wheezing--Ves sent us for a chest x-ray. We are to call for results this morning.

Sleep--Ves referred us to a urologist. He thought that was a good place to start, since Dad has had prostate trouble in the past. If that is all clear, we will come back to Ves again.

The whole visit was tiring for me; I can only imagine how exhausted Dad must have felt. Bill pretty much had to stuff Dad into the car for the ride home. Maybe he slept better as a result. We can only hope.