A Year of Being Here

I started this blog last year thinking that I would be an amazing caregiver and housekeeper, while trying to establish my photography business, make music, learn to cook, and figure out my future education plans at the same time.  Instead, I feel like I spent the last year of my life sitting in a recliner growing older with Grandpa.

It is hard to believe we're going on 28 months since Grandpa has lost his eyesight.  Many things have changed in that time - things that I can't even describe to him to paint an accurate picture.  I have spent the last thirteen months with him.  Preparing meals, helping with showers, telling him what channel he is on, what time it is, and constantly repeating the Brewer's schedule.  My patience have been tested in more grueling ways than any exam I've had in my seven years of college.

Some days I want to kick myself for not doing more for myself in the last year.  It seems like I blinked somewhere between July and January and 30 pounds magically appeared on me.  My diet didn't change, but I felt so compelled to be within reach of Grandpa that I didn't take the hour out of my day to exercise.  Working out was just one of the sacrifices I have made, but within the last few months I've realized that I need to take care of myself in order to take care of Grandpa.

I have no regrets about stepping up to help out.  Grandpa isn't shy about telling people how lost he would be without me.  When Grandma died eight years ago, I was living in Alaska and when I came home for the summer, I stayed here with Grandpa.  We were inseparable.  I remember meeting up with some former classmates and I didn't want Grandpa to be alone, so he came along.  I'm sure he didn't have much fun sitting at Culver's for two hours listening to girls chitchat about sign language interpreting, but I only had a little over two months in Wisconsin before the drive back, so we made sure we spent every possible minute together.

Grandpa is my last living grandparent and I know our time together isn't going to last forever.  I try to remind myself of this when he is sneezing loud enough for the neighbors to hear, demanding me to clean the garage (which, by the way, I still can't figure out how he knows it's messy), and constantly having me repeat everything I say several times.  When I think the days can be long for me, I need to remind myself that the days are probably longer for him.

With that, I'm entering a new year.  A new school year as I embark on a second degree in Addiction Studies this fall.  Starting tomorrow, I will be commuting back and forth on Wednesdays for class in La Crosse.  Unfortunately, class won't let out until 10, so it will be in the wee hours on Thursday mornings when I finally make it back to Grandpa's.  The semester is going to be interesting and I don't know if I will have an ounce of sanity left at finals, but I can't let another year pass me by.  There are days when I'm going to feel selfish, but I need that.  I need that to be okay, too.  Guilt-free selfishness is something EVERY caregiver needs once in a while.

Salsa! Salsa! Salsa!

Aunt Sandy & Uncle Lyle had a salsa making festival yesterday!  Grandpa and I were happy taste-testers, but I also offered some additional services involving the camera!!

These are the spicy peppers that require gloves to work with. 

C'mon Get Happ-Y!!!

Yowza!  My mouth was on fire just looking at these!

BUSTED!!!!!

Vianey's Farewell Party

Aunt Kathy & Uncle Larry's exchange student, Vianey, returned home to Mexico last month.  We had a farewell party for her.  Such a beautiful young woman with so much to offer this world.  We are so blessed to have been a part of her life for the two years she was here.  Here are some of the pictures from her party:

Vianey & Aunt Sandy with the quilt Aunt Sandy made for her. 

The quilt Grandma Shirley made for Vianey had
messages from everyone on the blocks!

Can't send her off to Mexico with out some WI apparel!

Uncle Larry & Gunner having a moment together.

The family with Colleen and without Melissa.

The family with Melissa and without Colleen.
Photoshop will merge these at a later date. 

Madeline's Half-Birthday

Madeline turned 4 1/2 on June 24th and she told Shannon she wanted a princess cake.  Shannon dipped the ice cream cones in white chocolate and made the cakes.  I showed up to help and we ran into some issues with the cake and frosting, so we decided it was fondant time.  The recipe I used for Nolan's Toy Story cake was greasy, so I tried a different recipe this time.  I'll definitely be using this recipe again.  It was so much better.

Here is the recipe:

Ingredients

• 1 tablespoon unflavored gelatin
• 1/4 cup water
• 1/2 cup corn syrup
• 1 tablespoon vegetable oil
• 2 tablespoons shortening
• 8 cups confectioners' sugar
• 1/4 cup cornstarch, for rolling out the dough

Directions

1. Place gelatin and water in a small saucepan over low heat. Stir until gelatin is melted. Remove from heat.
2. Combine the corn syrup, vegetable oil, shortening, and confectioners' sugar in the bowl of a stand mixer. Turn the mixer on low, and add the gelatin mixture. Beat on low speed until a paste is formed. Refrigerate for 15 minutes to let harden slightly.
3. To use, roll the fondant to 1/4 inch thickness, using cornstarch to coat the work surface and the rolling pin. Transfer fondant by rolling it around the rolling pin. Place fondant over cake and unroll it, stretching it into place as necessary. Use a paring knife to cut away the excess. Store unused fondant in an airtight container.

(Click Here to View it On Allrecipies!)

When I asked little Maddie if her cake was everything she hoped for, her reply: "Not weally."

Grandpa's Vision Loss

Ischemic optic neuropathy (ION) is a rare postoperative complication that can result in partial or complete loss of vision. ION results from an interruption of the blood supply to the optic nerve heads, which are supplied by the short posterior ciliary arteries, branches of the ophthalmic artery.  From AAOS

Basically, what I've gathered from all of the reading is that Grandpa's blind and the odds of this condition improving are in the same category as winning the lottery.  We've heard the same thing from just about every doctor and specialist we have seen.  The last doctor he saw told him his chances were 1 in a million.  As we walked out of that office Grandpa said to me, "Well, who's to say I won't be that one in a million?"  I sat in that office with him and heard the same thing, but obviously we interpreted it a little differently.  He told everyone he ran into during the following weeks that he was the only doctor that gave him any kind of hope.  Even if it is one in a million - it's still a chance.

The treatments that have already been tried have been unsuccessful.  Any treatment that would have given Grandpa the slightest chance of even having some vision return would have had to have been administered immediately; however, he was on a ventilator in the ICU for weeks following the surgery, so  his vision loss wasn't even known until much later.

Hope is an amazing thing.  I think that is what gets Grandpa out of bed everyday.  Well, that in addition to the amazing housekeeper, nurse, maintenance "man", and barista that he has.  The great-grandkids help, too.  And, the weather channel.  Gotta love that weather channel.  It's a good thing we can all keep each other entertained while we wait for a miracle.

Stem Cell Research

Last night on the news there was a brief news story about a stem cell research trial that improved vision in patients with macular degeneration.  It's all Grandpa has been able to talk about since last night because we were told last year that his only hope of getting his vision back would be some sort of stem cell research.  When the news clip was on, I was outside shoveling the driveway so I had to look it up online when I came in.

I spent an hour today looking through current clinical trials and nothing seems to be appropriate for Grandpa, yet.  When (or if) something does open up, he might not even meet the criteria to participate.  He doesn't qualify for any kind of macular degeneration study, but the current research does make us hopeful that there will be something to come along that could fit Grandpa.  One thing that may pose a problem is his age, but the woman on the news last night was in her 70s, which is part of the reason Grandpa has been so excited about this.

We were told to keep our eye on the east coast because that would most likely be where the research would be conducted.  Grandpa is so hopeful and I can only imagine how drastically his life would change if his vision came back.  Last time Gunner was here running around, I was looking at him and couldn't imagine never seeing his face.  Nolan and Madeline have changed so much, too.  We try and tell Grandpa to remember the upsides and focus on the things he still has.  I suppose it is a lot easier said, though.  I haven't been in complete darkness for the last twenty months.

I don't know how to go about getting Grandpa on a waiting list, or if there even is a waiting list.  If there's something out there that could turn this around, I hope I can find it.

How to Drive Your Caregiver Insane

GRANDPA: Hey, we need to call... um... uhhh... oh, what's his name?

It is with this line that I can almost feel a gray hair sprout on top of my head.  See, I know how this is goin to go.  It's going to start with a guessing game trying to figure out who he wants to call.  Then, the frustration of tracking down the phone number.

GRANDPA: [continues]  Ack, YOU KNOW!  I gotta take money out for the taxes...

MOM: Don?

GRANDPA: YEAH!!  That's it!!  Don!

MOM:  Sandy's coming tomorrow.  You can take care of it tomorrow.

[Mom leaves to go back to work.]

[Grandpa turns down the volume on the television.]

GRANDPA:  Look on your computer and see if you can find Don's number.

KIKI: Do you have Don's last name?

GRANDPA:  [A series of deep-in-thought grunting, sighs, and ugghhss come from his direction] UNION!  DON UNION!!!

So, I type in "Don Union" into the magical little Internet search to see what I can come up with.

GRANDPA: Well?

The screen is full of different recommendations, but nothing looks like what I'm supposed to be looking for... whatever the hell it is I am looking for.

KIKI: I need more information than just a name, I think.  Where does he work?

[Another long series of intense thinking brainstorming]

GRANDPA: Fax Sandy!!

[I start "faxing" aunt Sandy an e-mail message.]

GRANDPA: American... something...

KIKI: How about an address?

GRANDPA: It's on South 3rd Avenue.

[So, I finish the e-mail to Aunt Sandy and do a search for businesses on South 3rd Avenue for anything resembling a financial advisor!!]

KIKI: FOUND IT!!!!

[I go over to his chair and dial the phone number for him.  I wanted to just throw the phone out the window when I heard ... <ding><ding><ding> The number you are trying to reach has been disconnected. . .]

GRANDPA: Well, that's not it.

[And, it's back to the drawing board!]

GRANDPA: Did you search for "Don Union"?

KIKI: Yes!  South 3rd Avenue.  Grandpa, why don't we just wait until Aunt Sandy gets back to me.  Or, she is coming over tomorrow.  I'm sure she knows the number...

GRANDPA: WELL... I can't wait until tomorrow!  This needs to be taken care of by the 31st!  Call information...

KIKI: I need the business name to do that...

GRANDPA: Search again for "Don Union N 3rd Avenue" And Union has a J.

[Mental head bash against a pretend wall!  So, I do a search for Don Junion S 3rd Avenue.... and... still, nothing.  BUT, a search result brings up 17th Avenue.]

KIKI: Could they be located on 17th Avenue?

GRANDPA:  [Obviously frustrated with me] NO!

KIKI:  Well, I found a Don Junion on 17th Avenue... [already at the phone dialing the number]

I handed Grandpa the phone and Don was out of the office.

This type of thing is a daily occurrence in the house, so it isn't any wonder that the house is a mess and my graduate school application is still in-progress and not DONE.  I am now sitting at a local coffee shop enjoying a little quiet time.  Every care giver needs a little quiet time to reflect on how the hell I managed to put on 30 pounds since moving in with Grandpa.