Alzheimer's Art Quilt Initiative

Today a friend sent me an article written about Ami Simm’s Alzheimer's Art Quilt Initiative. In that article Ami says "One of the great myths of Alzheimer's is that the person who has it doesn't know what they're losing, that they just forget. But they are absolutely aware."

Imagine living like that, knowing that everything you know is disappearing. All of the knowledge you worked so hard to gather is leaving you a little bit at a time. Everything, just disappearing a little bit at a time. Imagine living knowing that day to day you will know less, until you don’t even know that anymore.

And if you are a proud independent person, you will try to hide what you know from everyone. You will go on living as long as you can, hiding your loss of memory from everyone, until you forget how.

You will make jokes about where you put the box of tissues you just had. You will laugh when you forget your best friend’s name. You will hide from people just because you are afraid they might notice. And even if you’ve never told a lie in your life, you will lie to protect yourself from your own loss of memory.

Those who truly care about you will know, and they will try to help. But you will look at their help as them trying to control you. And you know you are a strong independent person, and don’t need their help, so you will try to cut them out of your life.

But they will continue to love you, that will never change. Alzheimer’s will never steal their love from you, never. But sadly, you won’t know that.

Visit Ami’s Alzheimer's Art Quilt Initiative at www.alzquilts.org

Flag Day

Today is Flag Day, are you flying your flag?

Not much happening here, just hanging on and waiting for the next step. Nothing can describe our anxiousness. Nothing can describe our worries.

Trying to get back to real normal, although I’m sure there is no normal anymore. I spent a day this week with Joan, just visiting and catching up. We delivered some goodies to the Serendipity Quilt shop in Dagsboro for the anniversary sale, including a Flight Like A Girl t-shirt for her silent auction. On the way back from the quilt shop Joan was full of ideas for other places to sell them, from here to New Hampshire. I thought to myself how enthusiastic Joan was, and wished I had some of her spunk.

The next afternoon Joan called me all excited, she had a possibly huge order for t-shirts. Few minutes after we talked the phone rang again, and the possible huge order was confirmed. A local business wanted to send samples and order forms to all of the stores in the state, due back July 1st….. she thinks there could be orders of 150 or more come from it… way to go Joanie!

But she wasn’t done yet. On Friday she stopped by here with money for two more, bought one for herself, and five minutes after she left the house called to tell me she needed another one.

So right now my normal is being Fight Like A Girl headquarters. I’ve sold several on eBay this week, and Joan seems to sell one a day, or more, LOTS more.

Want one, send me an email!

Monday Monday

Monday, monday (ba-da ba-da-da-da)
So good to me (ba-da ba-da-da-da)
Monday mornin, it was all I hoped it would be

To all my friends who have written and called me about not writing, I am writing, just not posting it on here. If you want to know what’s going on, email me and I will send you my daily diary entries… And for all of you, thanks for caring. To the two who just today called with such kind words (and comical too) your words were music to my ears. I know I am doing the right thing, as hard as it is, and your support is greatly appreciated.

So what have I done today… well to start off I am back at the Relaying stuff again. The Serendipity Quilt shop in Dagsboro http://www.serendipityquiltshop.com/ is having an anniversary sale and is donating proceeds from silent auctions and other things to the Delaware Quilts Relay For Life team. Joan and I have been on the phone several times today, sharing ideas, and gathering information on how we can help.

I also spent some time up in my sewing room, that huge mess at the top of the stairs. I cleaned my desk off a little (while on the phone with those special friends) and even found the top of the sewing cabinet, which had been buried under Relay For Life things for the last six weeks or more. Best of all I found blocks which I had made at the Spring Retreat, which will be this weekend’s mystery project on Mysteries For Relay. http://groups.yahoo.com/group/MysteriesForRelay/ Now if I can find a place where it is cool, perhaps I’ll set up my little Jenome and finish my mystery project before the mystery begins!

Here’s an interesting bit of information I figured out today… We (John, Mike, Jonathon and I) have been Relaying for 12 years now, beginning in 1998 when we Relayed to thank the community for helping the Music Boosters raise $285,000 to send the bands and choirs to England. Delaware Quilts has had an official Relay For Life team for the last four years and two of those four years we’ve had two teams. All together Delaware Quilts has raised over $30,000 towards the fight against cancer. Thanks to ALL of our supporters and donors. And from me, thanks to ALL of my team members for all you have done to help reach that number. Without you, I could have never done it!
THANKS TEAM!!
HUGS

Getting back to normal?

I will no longer be writing about my friend on my blog, as it has become too hurtful to say anything at all. For those who have been following this, your support and kind words have meant a lot to me. I have decided that as long as it isn’t good news, I won’t write about it here. However if you would like to know what is happening, you can email me privately and I will fill you in. I will be keeping up writing, but not posting it here…

I’m going to try to get life back to somewhat of a normal, if I can figure out what normal is.

Relay is pretty much over, although we are still fundraising, we will always be fundraising until the cure has been found. Right now we’re trying to have some fun auctions to get people motivated into trying on-line auctions. I’ve put up a Fight Like A Girl (F.L.A.G.) long sleeve t-shirt for auction, it started at $1 and is up to $5, but it’s worth $18. As soon as I can decide which quilt I want to auction I will be putting one of those up too.

I have lots of t-shirts for auction on eBay so more than just local people can get in on them. I tried it just to see how well they went over, and they’ve done pretty well. I guess they aren’t available all over, so people are buying them on line. Here’s a link to my eBay auctions http://shop.ebay.com/merchant/delquilt

And I guess I can get back to sewing again, as soon as I clean up my sewing room. It’s just a tad bid disorganized, with Retreat stuff and Relay stuff and other stuff all over. I need to get rid of that stuff to unbury my sewing stuff. Somewhere in there are two projects I started at the Spring Retreat, one will be a mystery on the Mysteries For Relay group shortly, and I think I should get my sample finished.

What am I getting from it?

Last night at our Relay Wrap Up party I was just talking to a friend who asked me why I was doing all this. She asked me point blank what I was getting from it. I couldn’t answer, but I couldn’t stop thinking about her question either.

Let’s see…
I gave up a quilting trip to Texas in April where I would have taught two classes and given three trunk shows, and profited just a little bit for my Relay fundraising.

I have given up quilting almost totally, there isn’t enough time to quilt any more.

I have been away from my own home and slept on her sofa almost as much as I have been home and slept in my own bed.

I am worried sick about things I have no control over, and can do nothing to fix.

What am I getting from it? Worries, sleepless nights, and heartache too painful to even begin to describe.
That’s all…

The best-laid plans...

I wish I could say that the Doctors appointment went well, oh how I wish. But it didn’t happen that way at all.

It started off pretty well, and I was impressed with the new Doc almost instantly, but I wasn’t the patient. He asked her some basic questions, including why she was there, and she replied that she had no idea, there was nothing wrong with her. He asked more questions, and then so what can I do for you today.. and again she said I have nothing wrong with me. At that point John said Sheryl has dementia, and she looked at him with a shocked face and said “I do? Why didn’t anyone ever tell me that?”

We reminded her that her Doctor in New York had told her, which was why we have moved her, and that it had been confirmed by the neurologist. She laughed in a sinister way and said well it’s news to me…

When the visit was finished the Doctor asked John to stay behind, and that’s when things really went down the drain. She argued with the nurse saying that she ALWAYS paid her own bills and there was no need to bill the insurance company. She climbed into John’s truck and sat silently for a few minutes, and then asked who had her car keys. John said he did, and she held out her hand to him. He gently grabbed her hand and said I can’t do that, and that was all we heard the rest of the ride home.

Upon arrival at her apartment, she jumped out of the truck and told us there was no need for us to get out. John did anyway, and she slammed the door in his face. We came home to give her time to calm down, and he went back about a half hour later to give her the daily meds. She took the medicines, and then told him to leave. John said he understood she was angry, and asked if they could have a talk. She told him to leave, or she would call the police.

We called the Doctor, worried that in her state of mind she shouldn’t be alone, and he said he was afraid of that too but there was little we could do right then. He said that she was going to be a belligerent dementia/Alzheimer’s patient and there really wasn’t much we could do for her. She needed to be in a home where she could get proper watching after.

What is the expression, the best-laid plans?
We’ve failed, and now we have to start all over again.
We moved her down here so we could help her, and she refuses our help.
We provided her a lovely new home, and she can’t be there by herself, but she won’t allow anyone to be in there with her.
She won’t take her meds on her own.
She isn’t eating properly.

And despite all, we still love her, and we do care.... but how can we get her to understand that now?

Getting better

No, I haven’t written about our friend lately, but she’s doing ok, thanks for asking. John is now giving her her meds on a daily basis at the same time every day, and making darn sure she takes them. Although she is still a long way from herself, at least she isn’t biting my head off anymore, not that there’s much left to bite after last week.

We enjoyed two pleasant dinners out over the weekend, and a nice long chat about mostly nothing one night after dinner. It was nice, for a change, and I credit that to her meds starting to work in her system again, thank goodness.

Then yesterday morning something happened that will change a lot of things. She decided, completely on her own, to invite her sister to her new condo. Prior to this she did not want any contact with her sister at all, which I understand because her sister has a tendency to be a little domineering and inconsiderate of other people. John’s mother has always been like that, sadly, totally unlike her sister who was normally a caring and considerate loving person, before dementia anyway.

She invited her sister to her condo for a visit, yes, but had no idea where it was or how to tell her to get there. So poor John got the phone call we’ve been dreading, his Mother asking how to get to Sheryl’s. Before he told her, he called Sheryl to make sure she was ok with it, and she confirmed that she had indeed invited her sister for a visit. So John called his Mother back and gave her directions.

When I took Sheryl to the dentist later in the afternoon, she mentioned that she’d had a visit from her sister, and I asked her how it went. She said that it was pretty nice, went smoothly, and she was glad it was over with. I was thankful that it went smoothly but know darn well it’s not over yet. There are more chapters to this story to come.

Today we have our first new doctors visit, I can only hope that it goes smoothly… fingers crossed and prayers being said!

Sewing, I forget how and my machine is giving up on ever seeing me again...