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Aug. 25th, 2014

Thoughts. And Memories.

I'm sitting here, drinking a mug of hot Tea. Republic of Tea Vanilla Almond to be exact. With Virginia honey.

I have a cold, so already feel like crap. But all I can think about, staring out at the sparrows on the fence and the bird feeders, is the Sister In Law's comment that this Tea and a few others were from her mom (the Mother In Law) and that she didn't want them anymore, if I wanted any, have them.

It reminded me so strongly of when my mom told me about how Grandpa suddenly didn't want to put a garden in. And it made me so damned sad.

You see, every spring, like clockwork, for as long as I could remember, he had *always* had a garden. And growing up, I remember picking green beans from the back yard garden, munching on them as we went down the row. I remember digging potatoes in the side garden with my parents and grandparents, cousins. Between them and my dad, I think that's where I got my love of gardening.

But suddenly, there was no garden. Mom remarked that they had thought it was strange, but didn't say anything about it at the time. In hindsight, they wished they had. They would have gotten the Alzheimer's diagnosis that much earlier. They would have had that much more time to prepare for what was coming.

And now, I sit here, drinking my hot Tea, remembering my grandfather and thinking about my Mother In Law and it just makes me so damned sad.

Alzheimer's robs a family of so, so much. You will remember what things mean, that you used to do these things, but the person afflicted- they will not. That memory is simply gone as if it never existed. Eventually, they won't even remember you. Sure, they'll know you as someone who comes around often, who looks familier, but as to why they should know you, that they will not remember. It will simply be gone. Eventually, even the memory of you being a familiar face will also be gone. In my grandfather's case, he regressed to the point where he thought he was a child again and had to get ready for school some mornings. Before that point, he was trying to go to work- he'd been retired for a good 30-40 years or so.

The mother in law doesn't drive anymore. It's not because she can't, its more because they don't want to risk her suddenly forgetting where she was going, as she was going down the road. It's more of a concern for her than anything.

My mom told me about a time, after the bad storm that went through there and took out a significant number of trees on my grandparents' property- trees they'd planted when they bought the place-
my grandfather had taken the car to go to the neighbor's to check on them. He got there and back safely, but they found him sitting in the car- he couldn't remember how to put the windows up. They started hiding the keys after that, I believe.

So it did not surprise me that the mother in law didn't want these Teas anymore- she likely couldn't remember why she had them.

This is what Alzheimer's does.

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Aug. 20th, 2014

About that Ice Bucket Challenge thingy...

Don't bother ever tagging me in that ice bucket challenge thing. Because I won't do it nor can I afford to arbitrarily donate 100.00.
Good for those who do it or can donate that money.

There are two things I routinely donate to - Alzheimer's disease research and Akita Rescue. Because both are near and dear to me.

If that makes me a bad person (and we all know better, I trust), then so be it.

I started hiding all the reposts on Facebook. I should clarify that the reposts I routinely hide now are the celebrity ones because honestly, quite a few I could not care less about.

See here's the problem- once this ends, people will stop talking about ALS. IF they even knew that that was what this Ice Bucket Challenge was about in the first place.

It's the same with Alzheimer's, which yes, thanks to a few celebrities who have family members afflicted, is getting more attention.

We NEED to talk about these sort of diseases, because not talking about it solves nothing. It hides it from public view and the only way to get more funding and to make people care is to be vocal about it, every day, all year long, until there are cures. Not only when there's a fundraising activity going on, such as the ice bucket challenge, or the Walk to End Alzheimer's.

The more we talk about it, the more we share what we as family members or caregivers are dealing with, the more people realize just how prevalent these diseases are and that hey, it's getting worse, we need to do *something* about it now and every day.

My Mother In Law has Early Onset Alzheimer's. In just over a year, she can no longer drive, use the computer or operate the microwave. THE MICROWAVE?!?

Yet, no one talks about it. No one realizes just how BAD it gets. And if people with these sorts of diseases and their family members don't know that there IS support out there, because NO ONE TALKS ABOUT IT, how are they expected to get through this on their own? They can't. You can't. Even addicts need a support system. Yet, no one wants to talk about it. Society has decided that talking about things that rob a person of who they are- ALS, ALZ, Addiction, Parkinson's, Depression, etc- is shameful and needs to be hidden away. We need to change that.

And yes, the problem with things like the ice bucket challenge is that too often the message is lost in the telling. My husband thought it was an 'either or'- Either dump a bucket of ice on yourself, OR donate money. He didn't know it was dump the bucket of ice AND donate 10.00 OR donate 100.00 if you don't dump the ice. And when this 'fad'- because yes, that is EXACTLY what it is, especially among the younger set- passes, the charity will be right back where it started with people not really talking about it or seriously donating. It's the same with the Walk to End Alzheimer's- once the season is over (it's an entire summer thing), then people stop caring as much. I imagine it's the same for addicts- you go to rehab and come out clean and people think you're cured and don't need support anymore, not understanding that it's a daily battle for you and you need that support more than ever.

We need to break the cycle and start talking about these things openly, frankly and doing it until the world ends or cures are found.

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Aug. 14th, 2014

"You have to grieve for them while they are still here."

That's what my mom said to me today and she is so very right. They are essentially leaving you, even if they are still here in body.

Mark talked to his dad last night. What little he could get out of him- he doesn't like to talk about what's going on- the MiL has gotten worse.

She not only does not remember our anniversary, she cannot use the computer anymore because she doesn't remember how to. Which I think is likely hardest on the SiL as she would talk to the MiL , if not every day, nearly every day, via Skype. And now that the niece is no longer up there to show the MiL how to turn on the computer, or do it for her, let alone start up the program, I imagine that those Skype sessions have ceased.

She no longer remembers how to use the microwave. The microwave! That's how bizarre and selective this insidious disease is. The FiL has been doing much of the cooking lately as a result.

I asked Mark if his dad had said anything about the doctor trying her out on other meds, to see if something else won't help and he said he didn't say, that he didn't want to talk about it.

That's about the worst thing to do in this situation- not talk to anyone about it, keep it all bottled up inside and not let anyone help you. That's Mark's family though- they don't like to ask for help eve though they know they are going to need it.

Early on, I had told the FiL to please look into a local Alzheimer's Support group, because he would not be able to do this on his own, but I know he won't. The sad part is, I think he will continue to try to shut everyone out, to try to do it all himself and not tell us what's going on unless we force him to.

About the best I can do is simply be there, as support, for Mark and his sister. Because as this disease progresses, they're going to need it.

As of right now, financially we cannot afford to go up until November, I dread to think how much more will have slipped away between now and then. But I know, when we do go, we will make the most of what little time we have left. Maybe we'll go to the Philly Zoo, she always did like going to the Zoo...

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Aug. 12th, 2014

Points of reference

I debated making this post friends only. But honestly, we NEED to be public about diseases such as this. It is not something to be ashamed of. We need to speak out more, so people can understand what the families of those with Alzheimer's/ Dementia deal with. We shouldn't feel obligated to hide what's happening.)

Points of reference, I believe it was we call it these days. Touchstones. Mile markers. Progress points. Whatever.

The truth is, Alzheimer's fucking sucks.

The Mother In Law, Altoona Railroad Museum, Altoona, Pa. 2012

I believe I've mentioned before that my mother in law was officially diagnosed with Early Onset Alzheimer's about the middle of last year. They didn't tell everyone until near the end of 2013, but Mark and I knew. Well, not that it WAS Early Onset Alzheimer's, but that *something* was wrong, by virtue of my family going through it with my grandfather in 2011 and my grandmother dying of Dementia in April 2013, and noticing that she seemed to be 'losing her words' more and more frequently. We were going to suggest that she get checked out, just in case, when they broke the news.

Since then it's been a series of ups and downs. A real roller coaster ride, as they say. Most recently, a series of downs.

She developed a blood clot a couple of months back, it really affected her memory (lack of oxygen as it traveled and lodged in her lung). We found out later, after it had been taken care of, that it'd been a 'killer clot'. Yeah. Think about that a second. Anyway, her memory issues seemed to improve markedly after the clot was cleared. The meds they have her on to help try to slow the progress of the Alzheimer's seemed to start working again.

Then they came down for a visit and to get the niece, who, for much of her life, has spent roughly a month in New Jersey every summer, with her grandparents. She knows what's going on and quite frankly, is the smartest and strongest teenager I know in the face of a disease that is taking her grandmother away from her, slowly, a piece at a time.

The last day they're here, we all get together for breakfast. This is a tradition- if we can all make it, we all go. Otherwise, sometimes it'll be me and the SiL, BiL and niece. Sometimes just me, the SiL, and the niece.

This time, it was all of us, and funnily enough, we were the last ones there- usually we're there and waiting. Heh. Breakfast went very well, it was almost like old times, before the diagnosis, before we started watching for signs. For points of reference. For mile markers. The MiL needed a few promptings for words, but that was about it. Then the SiL took me aside while we waited for everyone else outside and said that MiL had been looking for the red Saturn when they pulled in.

We haven't had the Saturn for nearly 5 years now. She was here when we bought the CR-V.

I believe that might be qualified as a long term memory loss type of thing. But what qualifies it as long term? The length of time? The type of memory? What?

Our anniversary was last week. For 20 years, like clockwork, we would get a lovely handmade card from the MiL. She has a card making program on her computer that she uses, and every card is specifically chosen for the occasion AND the person(s) its going to. For 20 years, she sent out anniversary cards. This year, the 21st year, she did not remember that it was our anniversary.

Mark tried to excuse it by saying that they had the niece with them, maybe they got busy and forgot (she never forgot, no matter how busy, no matter if a card was a day late, she never forgot to send a birthday card, anniversary card, christmas card, you name it. It wasn't in her to simply get busy and forget.). Until he called to wish her a happy birthday this past weekend and asked, casually, if she'd sent a card, that maybe by chance it'd gotten lost in the mail. He said she was quiet for a moment and said, 'Well, maybe I'll get it tomorrow!"

She thought he meant HER birthday card, that we hadn't even sent out yet (yes, we were late in sending a birthday card, but that's why we also called).

He just said, ok, Mom, maybe so. And left it at that. But I could see that it bothered him, this point of reference. This progress. This... fucking Alzheimer's.

I told him he had 3 options- he could call his sister and talk to her about it , since they were up there to get the niece, they'd know what was currently going on and see if they'd noticed any differences in her memory or speech. Or he could let his dad know that hey, she forgot this date after 20 years, so he could have a point of reference as well, and maybe mention it at the next doctor's appointment, so the doctor would know, maybe the meds are losing effectiveness and it's time to try something else. Or he could do nothing. As of right now, I think he's done nothing. I think he's still trying to come to grips that THIS, this is the new normal. That it's going to get worse from here on out. That the next significant date may very well be his birthday that she forgets. Or his SiL and BiL's anniversary. Or the SiL's birthday.

' The new normal.' I hate that phrase, because absolutely nothing about Alzheimer's is normal. Nothing. It's all new and it's all bad. There is nothing GOOD about this disease. It takes your loved away from you while you're watching and there's absolutely nothing you can do about it.

Fucking Alzheimer's.

For more information on Alzheimer's, see the website. If you suspect you or a loved one is having memory issues, go get checked out. Alzheimer's has no cure, but progress is being made daily to help slow the progress. Early detection, as with many fatal diseases, is key.

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Dec. 30th, 2013

Random from the last week.

Tuesday of last week (Christmas Eve) we headed up to New Jersey. Had chinese for dinner that night. Very good food at the Fortune Cookie in Medford Lakes.

Spent a nice Christmas with Mark's family, his uncle and aunt from California cooked a great dinner for us, Mark's parents and his Grandpop. We ate too much, as per usual.

Thursday, trekked over to Cherry Hill to visit a Wegman's grocery store (well, Marketplace they call it) for the first time ever. Discovered two things- we don't like Cherry Hill people- rude, snobby types, and we don't care for Wegman's either. We liked the deli side where the cafe and seafood was, but the rest we don't care for. Also went by Woolbearer's in Mt Holly, to see about a tabletop loom. They didn't have what I wanted on hand and I wasn't comfortable leaving my credit card number and not knowing the exact cost (they couldn't/wouldn't tell me shipping), so we left empty handed- I don't need more yarn after all. I know, it shocked Mark too.) and came home, whereupon, after a snack of meats and cheeses with the Parents In Law, I found one on sale online and ordered it, for cheaper than it would have been through Woolbearer's- even with shipping, it was still less than full price. Yeah. It should be here this Friday and I'll get to spend the weekend cursing it as I try to learn to set it up.}:P

Friday, Mark and I went to Philly and visited the Italian Market (again), where we went to DiBruno Bros (again), got cheeses - Mark got a wedge of Gorgonzola Piccante- all his, I hate blue cheese, I got a wedge of Capricho Cabra Plain- sooo good, and we'll share the half log of Homemade Sweet Soppressata. I also got a slab of Italian Noughet. We also went to the Spice Corner (again), and picked up at least half dozen more herbs and spice mixes. Then we found the Fante's store, where Mark got a 1lb of coffee (that I promptly forgot to put in the cooler yesterday morning and that his sister will be bringing back for us, along with my bookmark, since I finished my book and it fell to the floor when I got up to put my book in my bag. Yeah.) and I got a manual ravioli mold for overstuffed 2" ravioli. On the way back, we stopped in one of the butcher's there and picked up a whole rabbit, which I had quartered and Wednesday, I'll braise half of it for dinner. Wandered South Street for a little bit after that.

Friday night, the SiL, BiL, and niece arrived with their dog, Ashe. That night the FiL grilled out some very tasty ribs. Caena and Ashe could not get enough of playing and chasing each other in the backyard.

Saturday, we had Grandpop's 100th birthday party. Yes, 100th. The man is an android. He'll likely outlive us all. Heh. Crown Plaza Hotel in Cherry Hill- so posh and elegant. I have photos, I just need to upload them. 100+ people at this party, almost all related to each other in some way. We knew maybe 15. Yeah. Mark got to catch up with a couple cousins he hasn't seen since they were all teenagers and grew up together- roughly 30 years. They moved out to California and lost touch. It was nice putting faces to the names, finally. All in all, it was a very nice birthday party. Lots of awards and letters from various officials and organizations for Grandpop.

Sunday, we came home. In the pouring rain. Yup. Apparently, Aries decided to go on a semi- hunger strike and didn't want to eat for Alex while we were gone. He did eat though, as he hasn't lost weight and has no mouth issues. It appears, he did not approve of the dry food we left for them, in addition to the raw. So we got a bag of the regular dry food and he chowed it right down. He was also typical very clingy kitty last night. Morrigan was Morrigan. She hacked up a hairball on my desk while we were gone in retaliation for leaving them. Yup. Typical Morrigan.

Ok, that's the good stuff.

Tuesday, we got news straight from Mark's parents that his mom has been diagnosed with Early Onset Alzheimer's. They've known for a few months but wanted to tell us all in person. On a scale of 1 to 10, with 1 being the lowest, for severity, she's currently a 2. They have her on meds to hopefully slow it down some. But they realize, there is NO cure. There is NO miracle drug that can stop this. It will, eventually, kill her. Hopefully, it's in another 20 years or so.

Called my mom last night tolet her know we made it home safely and found out my dad had another A-Fib episode yesterday. He is currently in the hospital for observation, as they could not find a cause yesterday and wanted to run more tests, as well as check out his defibrillator for malfunctions. Mom will be calling later this evening, hopefully with updates.

And that was my week. How was yours?

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Sep. 24th, 2013

HBO Documentary- First Cousin, Once Removed.

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Mygrandparents, 2011

I'm watching this right now and I'm reminded of listening to my mom as she related the progression of my grandfather's battle with Alzheimer's. He lost that battle Sept 28, 2011. I'm reminded of seeing my Grandmother for what turned out to be the last time, that same year and how she did not know who I was. My dad called to tell me she was gone, April 17, 2013.

5 minutes in & I can't stop crying. THIS is what Alzheimer's and Dementia does to a family. THIS is what it takes from you.

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My Grandmother and my dad, 2011

The Walk to End Alzheimer's is this weekend, on the 2 year anniversary of Grandpa's death, no less. My grandparents are why we walk. Someday we'll have a cure.

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Jul. 10th, 2012

Special kumihimo bracelets for a dear to me cause

Find a Cure For Alzheimer's
Kumihimo and beadwork bracelet
6.5" long x .5" wide

Fits wrists 6.5" to 8.5" via adjustable clasp

* * * * * * *

These special kumihimo bracelets have been made to help raise funds to find a cure for Alzheimer's disease.

The 12 strand braid is handwoven using Ella Rae 70/30 Bamboo/Silk in the Velvet colorway and Pure Pima 100% pima cotton in the White Linen colorway.

They feature hand beaded ends, in peyote stich, using Czech glass crystal silver lined beads, a silver plater lobster claw clasp and silver plated extension chain.

The center of each bracelet has a silver plated and purple enaled ribbon charm, to symbolize support for Alzheimer's research.

100% of the proceeds from each bracelet sold will be donated to my Walk for Alzheimer's Team ( ) , of which I will be participating in on Sept 15th, 2012, in honor of my grandfather, whom we lost to Alzheimer's/Dementia in Sept of 2011.

There are 3 currently available right now. More to be added as I complete them.

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