Saturday, May 30, 2009

Today IS Memorial Day

Thanks to those who gave us our freedoms, and thanks to those who are serving now.

Friday, May 29, 2009

Good giggle

I know exactly how she feels!


I got an email from a friend who wanted to know why my blog had turned so depressing. First, it just happens to be my life right now. And if that happens to be depressing, that’s part of life. And this part of life just happens to be dementia.

The dictionary defines dementia –noun - severe impairment or loss of intellectual capacity and personality integration, due to the loss of or damage to neurons in the brain.

And right now that’s what is running my life, and taking over my every minute. I’m sorry if you find that depressing. The changes in my friend are not her fault. She can’t help it. And no, I don’t have to put up with it. She isn’t my family, but for years she has been more like family to me than most of my family is. So I’m doing my best to take care of her.

And when the time comes that I can’t take care of her, we have made arrangements for then. Until then, I will do my best.

No, I am not alone in this, John has been doing as much “care giving” as I have been, and he’s had some rough times too. Yesterday he stopped by to check on her on his way home from work. And as soon as he was finished dinner, he was out to door to go help his Dad. That’s my John, and that’s why I love him… well one of the many reasons!

And to my friends who have been so supportive and understanding through all of this, there just aren’t enough thanks. Thanks for listening to me, thanks for calling me, thanks for the hugs, real and cyber.

Thursday, May 28, 2009

Another day in the Twilight Zone

This morning I got a call from my friend, who I have not seen for two days now. Well not quite two days, but more than 24 hours, seemed like forever. She wanted to know if I was going to the grocery store could she tag along. I said sure, and we set a time for me to pick her up. When I arrived she was trying to get into her condo, having great problems with the key. I will admit, it gave me trouble too, so I suggested that she only use the top lock, since it is more secure anyway. After she threw her mail on the floor, unlike her, I asked her to get her medicine bottles, since I knew one of them needed to be refilled. I had called in the prescription on Sunday night, and she only had four of one of the meds left then.

She handed me the pill bottles as she locked the door behind her, top lock, and I counted pills in the bottles. One bottle was short pills, meaning she’s either taken too many, or something else. And the other bottle, which should have been empty, had three pills. I said to her that it looked like she hadn’t been taking her pills, and she snapped back at me I don’t need to take them every day. I said but you do, and that was that.

I asked her if she minded if I stopped at the post office, and she said certainly not, so I did. Then we went to the pharmacy, and picked up her pills, and then off to the grocery store. When we got there she jumped out of the car almost before I stopped, and walked faster than I’d ever seen her walk to the entrance. She was struggling with a cart when I got there, so I tried to help her, and she snapped, “Get your own”

She walked in quite speedily, and I really had to rush to catch up. She noticed I didn’t have a cart, and yelled at me to get my own cart, and I told her I only needed a few things and picked up a basket. Truthfully I didn’t need to be shopping, but could pick up the few things on our list since she did. She rushed past the bananas and I asked if she needed bananas, and she yelled at me that she didn’t need bananas so loudly that the guy standing there said “I hope you hear that” and chuckled. She was long gone, so she didn’t hear him, I said “Well I need bananas” which I did, and I picked them up.

I went looking for her, but she was long gone… I picked up the few things on my list, and finally caught up with her in the cereal isle. When she saw me coming, she turned around and changed directions. I let her go. I found her again on the bread isle, and went up and asked if she needed help finding anything since she was new to the store… and that is exactly how I asked her, nicely and sweetly, trying to help the situation… she snapped at me “No, leave me alone.” Boy did I get strange looks from the people around us…

I went and checked out, and waited for her by the front of the store so I could help her carry her bags. She practically ran over me with her cart trying to get out of the store. I walked directly to the car, she took a detour, I wasn’t sure where she was headed, but eventually she made it to the car. I tried to help her put her things in, but she pushed me off.

When we got back to her place I helped her carry her things in, and was headed to the kitchen with three heavy bags of kitty litter when I said “Oh you don’t want these in the kitchen” and laughed. She snapped at me, “And why not!” and I said it’s your kitty litter, and she screamed at me just put them down, which I did.

I went up to her and said nicely “Please, we need to talk”… this angry monster then screamed at me “No we don’t, I don’t want to talk, get out of here!” So I left.

It breaks my heart to see my kind loving friend like this, but I know why. In her need for independence she isn’t taking her meds, and that’s made her this way.

Now what? I can’t say.

But I hurt, my heart is breaking…

Wednesday, May 27, 2009

I am living in a Twilight Zone

I am living in a Twilight Zone. Yesterday morning I was being ignored and feeling just a little bit like I was wasting my time… then she took a nap, and woke up her old self again, and things started changing so fast my mind is still spinning.

After her very short nap, she got up and came into the living room where I was reading. I asked her if she’d like to go out and she said it was too miserable to go out, and left the room again, returning with her rain coat on and purse in her hands. We went to the Post Office to check on her mail, which she hadn’t gotten since leaving NY, and then we went to grocery shopping where she bought some groceries for herself and even paid for them herself.

We went home and ate lunch and afterwards we sat down and talked. It was like the good old days again, some of the same old stories too, but she talked and seemed like the good old her again.

She soon tired and went for another nap and after an hour or so her phone rang. Five minutes later she came out with her arms folded in front of her and announced to me that her friend who had called thought I should go home. I said I didn’t care what the friend thought, I wanted to know what she thought. She looked at me strangely and I said it again. “I don’t care what your friend thinks, I want to know what you think.” After about a ten minute conversation I said to her that I thought she was just fine and that I was thinking of going home anyway. (Which I was, happily)

Remember how you felt when you left your child home alone for the first time ever… well that’s how we felt last night. It was only complicated by the fact that our house phone is dead, again, and that for some odd reason we can’t get cell phone signals very clearly, and the internet won’t connect either… thus the Twilight Zone feeling.

But last night I slept in my own bed with my husband and his snoring didn’t bother me one little bit. It was music to my ears!

Cell phones off and on all day today, but I have managed to get a few calls. Internet off and on, but I’ve gotten some work done. And the house phone is still dead.

And all is well in my Twilight Zone

Tuesday, May 26, 2009

Dreary Tuesday, in more ways than one

I am back with my friend again, after a lovely weekend of house cleaning in my own home. I’d like to report home is 100% clean, but the rain got the better of me and I didn’t get the kitchen done. Straightened out yes, but the floor still needs mopping.

After a weekend away, I wasn’t sure how my reception would be here. This morning she was up early, but stayed in her own room until 20 past 7. Today I am being talked to, but only when she wants to talk to me, my words are floating around and being ignored… that kind of day.

I suggested we go to the store, too miserable to go anywhere. I offered to make coffee, she didn’t want any.

She called a friend, and I heard her tell that person that she didn’t know her address or phone number, we hadn’t told her, although I have given her two dozen business cards with her name, address, phone number on them (with ICE numbers on the back). And just now at 9:55AM, she announced to the cats she didn’t want to go anywhere today and was going back to bed.

I want to be home, or with my old friend, the one who would sit for hours and talk to me about the good old times… the only times she remembered.

Sunday, May 24, 2009

Home Sweet Home

If anyone would have ever told me that cleaning house was fun, I would have laughed in their face. But when you haven’t been home for such a long time, and you are very homesick and you have been taking care of someone else’s home, it IS fun to clean your own!

I’ve spent the last two days puttering here and there all over the house, catching up on things. I’m still moving files from my desk top to my new lap top, which is fun… I’m getting to go through everything and clean things out on both computers.

And I’ve cleaned the bedroom, all the dust bunnies are gone, there are clean sheets on the bed, and the summer quilt. Looks bright and cheery in there.

Now I’ve moved on to the office. There are plastic bags full of stuff all over in there, which is how I ended up back here on the computer… I had to find my t-shirt inventory list so I could count how many of what shirt I have left, and maybe get some on eBay for sale…

Once inventory is done, I’ll finish cleaning the office, including the Relay For Life files, which I need to get to the ACS office sometime… I guess that will wait until this year is officially over in August. Hopefully there are LOTS more money envelopes to go in there, even though I’ve been telling everyone to send stuff to the office, so I doubt I will get much more to file.

And yes, I am enjoying all this cleaning, even the six loads of laundry I’ve done.

Home Sweet not quite clean but getting there Home!

Saturday, May 23, 2009

Memorial Day

After the posts I’ve been writing about memory, it is only right that I remind those who read this something… Memorial Day is not the official start of summer. Memorial Day is not a three day weekend. Memorial Day is not an excuse to act stupid in the beach town you are visiting. And for the stupid law makers who made it all of those things, Memorial Day is NOT the last Monday of May.

Memorial Day is May 30th. And Memorial Day is for remembering the men and women who died so that you can do all of the things above.


We were going to leave her alone last night… we were ready to walk out the door and let her have her place to herself. But I remembered a few things that made me think better of that decision..

She doesn’t know where she lives. She told the nurse at the dentist office that yesterday. She doesn’t know her phone number, or anyone other numbers any more.

If there was an emergency, what would she do? How could she tell anyone what she needed, if she doesn’t even know where she lives?

If she left the condo and got lost, she couldn’t tell anyone where she lived, or who to call to find out any information.

I gave her an ICE (In Case of Emergency) card, with her name, address, phone number, and emergency contact information on it. I’d typed it all up nicely and neatly and gave it to her to put in her purse. She said she didn’t need it, but I saw her put it in her purse anyway… until later when I put something in the trash and saw it laying on top.

I’ll make up another card later today, before I go back there.

Yes, I spent the night at my own house last night, although it was far from a normal night. John wasn’t here, he stayed there to keep an eye on her. I missed him, and didn’t sleep well in my own bed without him. I was tired when I got home, but just being here energized me. I started laundry at 9PM. I watched some shows we had taped while on the road, would you believe I didn’t know who won either Hell’s Kitchen or Survivor? (And don’t tell me yet, I haven’t watched the final episode of Survivor yet!)

As usual, John left his alarm on, and it woke me up at 6:30 this morning. As tired as I was, I got up anyway, I was home. I did some laundry switching, that in dryer, more in washer… havn’t been home for ten days, it’s piled up. I puttered around in the bedroom, came out here to the kitchen and decided to add some more things to my new lap top, things I need to have on here for Relay and Retreat business. I answered emails, well those that had come in for the last ten days which I hadn’t gotten replied to.

Several friends have written and/or called me about my blog posts. One asked me why I was writing so depressing… well that’s my way of letting my family and friends what’s happening in my life. She won’t ever read what I wrote, and it’s good for me to get it down. If anything it will help me remember.

Another friend said “it is hard having someone in your home all the time.” Imagine being in your own home, but not knowing it is your home. Imagine walking into your kitchen, and not knowing where anything is. Imagine standing in your own living room, and not knowing which way the front door is. Imagine turning on light switch after light switch to turn on a light, not remembering from day to say which lamp is on a switch, and which one isn’t. How can we possibly leave her alone until she knows these things, and since her short term memory is gone, she has to relearn all of them again.

Moving was hard on her because she’s lost all the familiar things, nothing is where it was before. I’ve watched her open a drawer to get something, not to find it there, because it’s still in a box. Hopefully this weekend we’ll get all the boxes empty. If anything rearranging things in drawers will keep her busy, and eventually, I hope, she will remember where things are, and maybe even where she is.

Until then, we'll be there for her. If she doesn't learn, there are options... but I don't want to think about them yet.

Friday, May 22, 2009


I’m being ignored again today. Nothing is being heard, and I am totally out of touch with this person I am taking care of. This morning things seemed fine, we went shopping for some things we needed, and she seemed ok with that. Then we got to the check out, and although I know she has money in her purse, she didn’t think she had enough to pay her bill… so I put it on my charge card.

On the way home she wanted to stop at the bank, but I suggested she check her purse again, and sure enough she found her money. “OK” she said, “so we don’t have to stop at the bank.” When we got home we put away the groceries etc, and she went into her room, which has become her hiding place. At 11 she wanted to leave for a 12:30 appointment which was five minutes away. I told her it was a bit early to leave, and back in her room she went.

While filling out forms at her appointment she didn’t know her address, and told the clerk at the desk I didn’t tell her where she lived, and that she didn’t have any emergency contacts. Once she went in to her appointment, I told the clerk what was up, and she was sympathetic, and we looked over the papers again to see what else she had left off the form. Good thing we did, she had said she wasn’t on any meds, and she is. Plus she said she was allergic to penicillin which we never knew. This prompted them to call her Doctor in NY, and he gave them a whole list of stuff she was allergic to. She most likely didn’t know any of this… and I learned that I have a LOT to learn.

John is coming over here tonight, and I am going home. I’d rather be spending the night with my husband, but just to get away for one night will be nice…. But it will make it harder for me to come back too.

Thursday, May 21, 2009

My friend

We’ve moved my friend closer to us so I can keep an eye on her. I knew before we moved her that there would be an adjustment period, her Doctors warned us the move wouldn’t be easy. They were certainly right there.

The new place is very nice, much smaller and cozier, although still big enough to be comfortable and not at all tiny and imprisoning like the home would be. When she and I came in her furniture was all nicely arranged, thanks to some very understanding movers. Most of the boxes were stored in the spare bedroom or garage, with only a few left out. Those boxes we emptied the first day, arranging the kitchen so everything was easy to find.

The second day here we emptied some more boxes, making sure she was helping put stuff away, hoping she would remember where things went. We took her out for a nice dinner and showed her around town a little. She had been here many times before, but there have been so many changes, it’s all new to her all over again.

The third day was horrible, for me at least. She was snappy and moody, and no matter what I did I was wrong. I took her grocery shopping, even though she said she didn’t need anything at all…. The refrigerator was totally empty and the only other food in the house was cat food. She insisted she didn’t need anything at all, but managed to buy $97 worth of stuff… well I bought it, since she didn’t need anything, and wasn’t offering to pay when we were at the checkout.

We had to run into town to take care of some paperwork for utilities, but she refused to get out of the car. And when we got home, she snapped at poor John, who was only trying to help her.

Yesterday was much better, we took a nice drive through town, I showed her all of the pretty houses, then went out to the beach. She didn’t want to get out of the car, so we just drove all around enjoying the view. She decided it was lunch time, so I went back in town, and since it is almost summer, had to find a parking place before we could find a place to eat. I was afraid she wouldn’t want to get out, but I guess her hunger was getting the best of her, and she seemed to enjoy the walk down the cozy streets as we looks for something she would like. We finally settled for a small cozy place and enjoyed salads for lunch.

Then we came home, and she napped, while I caught up on some of my work. After nap, dinner, and almost immediately after dinner she was ready for bed. Her light was out at 6:20.

Today I’m not here, or at least she isn’t talking to me. I ask her questions and get no answers. She won’t even acknowledge me. She has gone into her bedroom and shut the door…

I am sad to see my friend this way. I miss the old her. But I think she is gone. Maybe this move wasn’t the right thing… maybe we should have just let her move into a home. No, they aren’t homes, they are prisons for the mindless, and I do think she has a mind in there
somewhere… it will come back, even if just for a few minutes each day.

Saturday, May 16, 2009

Aww, come on - tell us where the next retreat is going to be.

Wow, you ladies are curious aren’t you, LOL! That was just the one comment left here, the other ladies sent emails asking where we were going to be.

Well I’m sorry, I am not quite ready to reveal the secret yet, but I will tell you that everyone is going to LOVE it. If you thought our old place was perfect, then this is beyond perfect. The rooms are gorgeous, and every room has a microwave and small frig. The view is spectacular from most rooms (but not all), and the conference room is bigger than what we are used to. There is a complimentary breakfast EVERYDAY including baked oatmeal , bacon & sausage , made-to-order eggs & omelets , country potatoes , oatmeal and cold cereals , made-to-order waffles , fresh fruits, bagels, breads & muffins , juices, hot & cold beverages. There is a pool and a hot tub, open much later then you-know-where.

There are some down points, the conference room and our sleeping rooms will not be on the same floor, but there is an elevator. The conference room will not have unlimited beverages, but they will be available in the guest room one floor up, and that includes cappuccinos (SP?).

Having said all that, the cost will be a bit higher starting with Spring 2010, but they have agreed to keep the price the same for the 2009 Retreats, giving everyone a chance to see and fall in love with the new place. The conference room will never be an issue again, I will pay separately for it, and we will be guaranteed use of it regardless of how big our group is. And I am pretty sure I will be able to have more retreaters at each retreat, since the conference room is SO much larger.

I will let everyone know more as soon as I am home on Monday, so look for an informative email then! (Or maybe Tuesday, just incase I can't get home Monday) But here is a hint...

Friday, May 15, 2009

Marge where are you?

That was all a friend said in her email to me… I guess not everyone knows about my latest adventure so let me fill you in. Last week right in the middle of getting ready for Relay a Retreat crisis popped up. After 11 years at the Inn they are making some policy changes that pretty much make having any quilt retreats there impossible. If my retreaters were willing to sew two or three to a table we could stay there, but that isn’t going to happen… and when was the last time you saw two or three sewing machines on a six foot table anyway?

So once Relay was over and most of my work finished for that, I started hunting again for a location to hold quilters retreats. Of course I called the convention bureau and asked for their help, but the groups lady and I played telephone tag, and I was impatient, so I did some looking and calling on my own. Finding a hotel with a nice conference room isn’t as easy as you might think, and finding one with openings when you need them is even harder.

And I’ve learned from my experiences in traveling all over the world that you cannot rely on what you see on line to judge a place. Pictures are not always accurate, and sometimes what you see on line and what you see when you get there are two different things. So I will not book any location for a retreat until I have checked it out personally.

So that is what I am doing right now.. as well as visiting friends in NY, doing some quilt shop visiting, and just plain relaxing while looking for a new place to retreat.

There are several possibilities already for retreating, and I am hoping they are even half as nice as they show themselves on line… time will tell. I’m touring hotels all day tomorrow, so cross your fingers for me.. no for US, so we can resume our happy retreating adventures.

Sunday, May 10, 2009

Happy Mother's Day

What does one do on Mother's Day? Well if you have a Relay For Life the same weekend, it's probably not the same as how most Mom's do Mother's Day.

First of all you are functioning in a daze from the lack of sleep for several nights in a row... Thursday night your mind is full of stuff you have to do before you go to Relay, all the reports you need to take with you, all the other stuff too...
Cameras, as many as you can, with the time and date set the same on all of them to make editing easier.
Changes of layers of clothing since you never know what the weather will be.
Bedding, although I haven't used any bedding for several years and am not really sure why I even bother packing it, LOL!
And just about the time you finally fall asleep, something else pops in your head and you are wide awake again.

It's amazing you can even function Friday because of all the sleep you didn't get, but somehow you make it to the event and all of a sudden you are energized and raring to go. And you manage to stay awake through it all, and most of the time don't even realize you should be sleeping.. until you sit down.

I learned the hard way, don't sit... it slows you down, and reminds your body that it should be sleeping. Keep moving, keep active and you won't miss the few hours of sleep you are missing... yet.

Saturday morning after closing ceremonies you are so full of joy and excitement, it's almost hard to wind down. But eventually your body gets the best of you, and you climb into bed and sleep like a baby. (You sleep so much you don't even hear Fed Ex banging at your door with your new lap top)

Eventually another part of your body demands to be taken care of, and you have to get up and eat. (Bet you thought I was going to say something else, didn't you?) So you get up and eat, and walk around in a fog until the lack of sleep catches up with you again and you find your way to the covers.

Then you wake up for Mother's Day, your body recovered but with lots to do.
Well I've done all I need to do for now. And I've talked to one of my son's, who is taking his special lady out for her birthday, which makes me happy. He's learned that she is his family now, and taking care of her should be his #1 priority. And my other son and his special lady will be taking us out to dinner later. What could be a more perfect way to spend Mother's Day... darn if I know!

Thursday, May 07, 2009

This little light and the BIG bright one in the sky

Update… the previous post mentioned AC problems, well they fixed that, sort of. The unit that switched from heat to AC was broken, so they turned off the heat. We were cool for the last day of that heat wave, and froze until yesterday, when the temperature went up outside and the repair man finally came and fixed the system.

This week has been totally insane, working on too many things at once, and complications being thrown at me left and right. There was a point where I honestly thought I was done for, giving it all up and leaving town… but a good nights sleep and things looked different, so I’m still here.

Tomorrow is Relay, and I can’t wait. We’ve had horrible, HORRIBLE, weather, but today the sun came out and hopefully it will stay out. Regardless we’ve raised over $85,000 so far and I’m sure lots more will come in tomorrow.

I won’t be posting much, too busy. As soon as Relay is over I have other unfinished business to take care of. Sooner or later life has to settle down and let me get back to what ever normal is.

One of my Relay related side chores today has been listening to suggested music for the Luminaria Ceremony. I love music, and it was a pleasure. I suggested this song, and in my head can see all the Relayers walking around the track clapping their hands and singing away….

Now let’s hope the sun shines and the candles burn brightly at Relay tomorrow! 

Help me fight back against cancer!