Don't tell me she can't form new memories.

It's amazing how Mom can forget every little thing. I mean everything.  I can pick her up from her club and we get in the car and I'm not even out of the parking lot sometimes before I ask, "so, what did you all do today?"

Sometimes she tells me she doesn't remember.  Sometimes she says, "I don't think I went to club today."

Lately, she's been having trouble with her dentures.  I have to help her with the glue for them and cleaning them at night.  Somewhere along her path of deterioration she has forgotten that her teeth need the fixodent to stay in place.  So if she forgets, they just flop around.  She's convinced herself that some man has her teeth and that the ones she has are not hers. That they've been switched.  Once I realized she was forgetting the paste I now put it in for her and they stay secure, but she hasn't forgotten (like she does EVERYTHING else) that some man has her teeth.  At least once a day I hear, "I sure wish I could find that man that has my teeth.  He got mine and I got his and I'd love to have mine back and I'm sure he'd like to have his back."  I'm thinking about having a friend of ours come over and "bring her teeth to her".  Wonder if she'll remember that?

She loves the day club,  but sometimes I think she might be onto me. The other morning we were in the car on the way there and she turned to me and asked, "what exactly is the purpose of this place we're going, anyway?" I answered the best way I knew how.

"It's a place where people your age can spend the day together so they don't have to be alone all day." I know she has a fear of being alone and it's the bigger reason we don't leave her alone anymore. 

She said, "well, that's a good idea and they really are all very nice there." Then she added, "you just make sure you tell them that I'm not an inmate there and that I still have all of my faculties."

I assured her,"they already know all about you, Mom."     

The stories she tells

Over the past year or two I've watched, and mostly listened to Mom's stories evolve. They've slowly gone from familiar stories I've heard over and over throughout my life, to unrecognizable, yet fairly entertaining yarns about people I've never heard of.  With Alzheimer's you expect them to forget things, but to hear her totally fabricate something gets to be a little weird. It all stems from something in her memory, I'm sure, but there is at least one or two stories she tells that seem to be complete fabrication.

When we go to any large department store, she will tell me how the Troyer boys helped to build it years ago, and when she is telling it she will always look up toward the ceiling as if to see one of them perched up on the rafters. We are about 250 miles from where she grew up and although she did know a family named Troyer, I doubt any of them helped to build the local Wal Mart 5 years ago. But I always listen to her and I always seem to look up with her, like maybe we will see one of them sitting on the rafters, waving.

These days, too, when she talks about Dad she'll tell someone all about how their marriage was the best in the world and how happy they both were. Then she will immediately follow that with, "but it wasn't to be for very long.  He was taken shortly after we married. Just got sick and died." That one in particular is heart-wrenching for me because they had 49 years together.  But on the upside, she's forgotten about the whole "Vioxx killed him" scenario that she used to be so obsessed with. And then sometimes she'll even seem to forget she was ever married. She'll say, "Love never found me.  Having that perfect someone just wasn't meant to be for me."

My Grandmother married a man from Italy in 1953. Mom was grown and on her own but he was still a perfect step-dad. And when Mom got married and started having kids, he really was the perfect Grampa. He never had children of his own and we were the world to him.  He had a shoe repair shop in the basement of his garage and he made wine in the basement of his house. We often talk about how good his wine was. As kids we were always given a small glass with a holiday meal. So, last week when my younger sister visited she wanted to go to some of the wineries we have here in Indiana. So we took Mom and went to a wine tasting. We really had a ball...at least everyone except the woman serving the wine.  She stood behind the wine bar and poured a little in each of our glasses and when she got to Mom's, Mom said, "my Grandfather came from Belgium (that much was right) and he made wine (wrong)."

The lady said, "well, that's neat. You don't hear too much about the Belgians making wine."

Mom said, "oh yes! His wine was so good he started his own winery. People came from all over to learn from him how to make it."

(Mom's grandfather did come over from Belgium but he was a glass maker and much more of a wine drinker than maker.)

At this the lady was very interested and asked, "where is his winery?"

Mom said, "Oh, that's been years ago and it's not around anymore. But it was in Ohio."

At this point I said, "Mom, Grampa Louis made wine, too. He was from Italy." I looked at the lady and added, "but he just made it in his basement." I thought this might end that line of conversation but as she poured wine from the next bottle and came down to pour into Mom's glass, Mom started with the same line as before.

"My grandfather came from Belgium and he made wine..." I think after the third or fourth tasting the lady either figured it out or thought we'd been to one too many wineries for that day.

The oddest story she tells right now is the one where she was asked to come and tutor a bunch of boys. She never says where this took place or who the boys were, but they were the best six boys she'd ever been around. they gave her gifts when she left, too. She claims to have gotten the purse she carries from them. She also has an old manicure set that she swears came from them. With most of her stories I can pick out little bits of real life that she's gotten confused with other things but this one is a mystery. I don't know that she ever tutored anyone, although she did help out and teach Art at my school when I was in the 5th grade. But only once a week, I think. She also taught CCD on Sunday mornings before Mass.

I continue to be surprised on a daily basis...

 

Time to start cleaning

Mom seems to really like the Day Club. She's asking every day now what time she has to be ready to go. Her schedule was originally W-Th-F. But I changed it to M-W-F so that she goes every other day and doesn't have 4 straight days that she doesn't go. That was enough time for her to forget that she goes...and forget that she likes it.  It's so good for her to be around people her own age and still be able to come home at the end of the day.  And it has to make me a better caregiver. That free time for me is going to be great when I can stop and enjoy it. If I ever do. The first free day I had I spent cleaning her room. It's hard to get in there and start throwing stuff out when she's right there. But she's become such a hoarder of odd things, I had to get in there just to clear it all out. Every rubber band on every newspaper that comes to the house is wrapped around her denture cup because, "you never know when you might need a rubber band." And if it rains they put them in little orange plastic bags. Those are very neatly folded and stuffed in various places around her dresser. She stashes any and all pencils she might find...and then when she takes a notion to do a puzzle she can never find a pencil. And neither can I unless I go in her room or look in her purse and find a bundle for her.  And books, too.  She's always been one to read before she goes to bed so she has books and magazines stashed on her nightstand.  Most of them came from my bookshelf and she insists on a different one every night. She wore one old paperback to a frazzle. The pages were all falling out of it and she spent more time trying to keep them in order than trying to read the book, but she was kind of attached to it so she always had it by her chair or by the bed. So, the first day she was gone all day I cleared off her dresser and made new picture collages for her wall. I put books away and threw out the old paperback. And that was just a start. Since then Stan has been on vacation or I've had the grandkids, so I haven't been able to do much more, but when summer starts winding down, I can get back at it.

Looking for Help

Sometimes you just have to admit defeat.  And that's how I've been feeling for the last couple of months. Defeated. Burned out, depressed, over it...those are some other phrases that come to mind. When you're with someone 24/7 who has AD it can wear on you like a wet pair of jeans on a hot day. You get to the point where you don't think you can stand another day of it and the next day comes and somehow you just keep on plugging along. But inside you just know that the quality of the care you give suffers because of it. You go through the motions of the day. Coffee, shower, toast, pills, indoors, outside, grocery store, department store, sandwiches, puzzles, TV, music, dinner, pills, bedtime. And through those same actions every day, day in, day out, there is conversation. The conversation is also very similar from day to day. The stories are the same and have been told over and over and over. So the defeat and the burn out and the depression ebb their way in like slowly rising flood waters. Each activity we do during the day is like throwing a sandbag down to fend off the flood waters.....it works for a while but the waters still come and eventually the white flag goes up....and you begin a search for a nursing home.

I've been to four nursing homes so far.  The first was no help. A waiting list and private pay deterred me from asking much more than a couple of questions. The second had a director/saleswoman who seemed bent on nothing more than filling her "beds". The third one (the third time is always a charm, isn't it?) gave me a TON of information that will be extremely useful in the future. I sat in the office of that one for about an hour and learned a lot about what I needed to look for, what kind of place Mom needed to meet the demands of her disease. They had a place in their building just for Alzheimer's patients. After hearing all about it and the steps needed to get Mom in, I was pretty sure I had found the right place. But when I toured it and watched the AD patients in that unit, I thought to myself,  "this may be the place, eventually, but she's no where near that stage right now." All of them seemed to be so much more advanced in the disease. I told the girl what I thought and she told me if Mom wasn't ready for their AD wing, their facility was just one of several places in the area who were affiliated and had the Auguste's Cottages (this is the name they gave to the AD wings, named after the person who had the first documented case of Alzheimer's).  She encouraged me to check on more places to find the right one for our needs.   Then she told me that maybe day care was all she needed right now and gave me information about an adult day care facility on this side of town.  I was just tickled to leave there and have so much more information than I had going in.

A week later I went to another nursing home. It had the Auguste's Cottage also, but it was brand new and had a beautiful courtyard, nice rooms. But again, the stages the people there were in  were a lot more advanced than where Mom is. I talked with one of the admissions councilors at length about this and she proceeded to tell me that maybe what she needs now is just adult day care.  She gave me a brochure on the same center I had already heard about. So I went there.

The adult day care calls themselves the Day Club.  I like that. It makes it so much easier to tell her where she's going. My first visit was just me of course, and the girl I spoke with used to work in one of the Auguste's Cottages on the north side of town. They make sure everyone is busy most of the day. They do activities like crafts, exercises, devotions (it's in a church), one of them was going out to buy a Wii when I was there to get the Wii fit and get them moving...I thought that was great. And they had them making vinegar pie that day, too.

The second visit was with Mom and Stan happened to be off that day so he went along with us. The plan was to leave mom alone for a while with the rest of them and let her visit and see what she thought about it. This place also has a beautiful courtyard and she sat out there and talked with some of the other ladies while Stan and I sat inside and kind of watched through the window.  She seemed ok with it. I had been telling her that I need to find her somewhere to go while I went and looked for a job. She hates to be alone and I thought this would be the perfect thing for her. I kept talking it up and just hoping she couldn't tell that I was a nervous wreck about it. I think she wasn't really understanding though because every time I said, "this will be a great place for you to be while I go back to work!"

She'd then say, "oh, you're going to be working there? That'll be great! I can see you all day."

And of course, I'd say, "I'm not going to be working there. I need to go out and find a job and you can stay there while I'm gone."  And that seemed to be ok with her.

The next step was a TB test and then she could go in if that came back ok. It did and she started yesterday. The first day was only a half day, though, to make sure she would be alright. There just seemed to be so many steps to ensure her well-being and that was fantastic. But nobody was worried about mine. I was a nervous wreck. Call it Day Club all you want, I was taking my Mom to daycare. I was leaving her with complete strangers. Oh my gosh, what if she thinks I'm not coming back to get her? What if she forgets me in four hours? Uhg. I never had a kid to go through all that with and for the first time ever I was glad about that.

There are two songs, that when I hear them, I think Dad must be close. One is You Are My Sunshine. It's one you don't hear often, but he recorded it when he was playing around with his first computer and sent it in an email to all of us girls and grandgirls on Valentine's Day one year. He also used to sing it to us and the grandkids every now and then. The other one is Green Day's Good Riddance.  While I always hated the name of that song, I liked the message and some of the kids liked it, too.  So we played it at his funeral. Ever since, my sister and I both feel like he's around when it plays, as it does play at the oddest times. 

So yesterday I was a ball of nerves, wondering how Mom would do on her first day alone at the CLUB. When we left the house I was close to losing the breakfast I fixed for her and I on her last official day of freedom from incarceration in the CLUB.  I was already getting tired of that little facade. So, a mile into the trip, Green Day comes on the radio with that song.  Nervous, yes....close to tears, absolutely not. Until now. I bawled like a baby behind my sunglasses and don't you know I looked over and she was toe-tapping and clapping her thigh to that music!  I was a blubbering idiot and trying to hide it from her because I didn't want her to be upset, too. I wanted this first visit to be as positive as it could be. My voice cracked when I tried to tell her, "we played this song at Dad's funeral."

She got serious and said, "awe...who was your dad?"  That might upset a lot of people but I'm used to things like that coming out of her....and that was all I needed to make me laugh. Not at her, but just laugh inside and straighten up. And, yes, this was definitely the right choice to make.

I picked her up 4 hours later and they were making cookies. When she saw me she jumped up and was ready to go but I told her to go ahead and eat her cookie and I sat down at the table with her. I didn't really take that as a good sign, her wanting to jump up and leave. But as I sat there, two more people came in to collect their loved ones and both of them jumped up also and were quite ready to go. One of them was named Mary.  Her husband came for her and she got up to go as soon as she saw him. They said, "Mary, don't you want to eat your cookie?"

"No," Mary said.

"Don't you want to give it to your husband?"

"No." And she was gone.

When Mom and I got to the car I asked her if she had a nice time and she said that she really did. She talked about how nice they all were. I said, "well, that's good. Now you're going to go back tomorrow, too."

She looked at me and asked, "do I have to go back?" 

Today she is there for the whole day. She seemed a little disappointed at having to go again, but she was fine when we got there. She wore winter clothes in there. We had to break down and turn on the air yesterday and when she got dressed she was obviously cold, so she put her turtle neck on and her pant suit. She won't hardly change clothes for me, once she's dressed so I let it go.  Some times you just have to let it go.

 

The golfer dude

One of Mom's favorite pictures of Dad is one he had taken several years before he died. It was one of those novelty photos where they put you on the cover of a fake magazine. In this case it was a golf magazine.  It really is a good picture of him and she has always treasured it so I make sure it's beside her bed. The other day we were in her room and she pointed to it and said, "isn't that a handsome fella?" I looked at her, unsure of whether or not she was pulling my leg. I couldn't tell if she was or not so I just said, "yes, he sure is."

A day or two later she was sitting at the kitchen table and she got up and asked me to come with her. I followed her into her bedroom and she pointed to the picture of him again and said, "that's such a hansome man. But nobody will tell me who he is." At this point I really didn't want to point out that it was her husband because I knew it would upset her to know that she'd forgotten what he looked like. She still talked about him frequently and I know she remembered him, but she was remembering him in his younger version, I suppose. On her other nightstand is their wedding picture and she knew who he was in it. Partly, I'm sure, because she's also in that picture. And besides that, the older the item, the more likely she is to remember it. Then she just laughed and said, "the golfer dude. I think I've fallen in love with him."  She walked back out of the room and said, "but he's probably married and has 6 kids so I'm sure I'm wasting my time."

I hope he talks to her in her dreams. Sometimes I think he does. The other day she fell asleep in her chair and started talking. Most of it was mumbling, but she was smiling quite a bit and at one point I heard her very clearly ask, "where are you?" I find comfort knowing it had to either be him or one of my grandmothers. At any rate, the golfer dude and her handsome groom bookend her bed and watch her sleep every night.

This morning we were having breakfast and Mom asked me, "where did you grow up?" There wasn't a really easy answer to that because we lived in so many places so I just said, "with you and Dad. You and Dad raised me, you're my Mom."

She seemed pleasantly surprised and said, "then you grew up with me and Gramma, too! In Ohio. Because that's where I grew up." About then, Stan yelled from the other room, so I went to see what he wanted, leaving the subject alone.  I know I'm supposed to play along but there are days when that is hard to do.  Besides, these incidences are still semi rare enough that they still surprise me and sometimes catch me off-guard. I was glad he yelled for me when he did.

Later he and I took the dogs for a walk and were gone about 20 minutes. When we got back I smelled something cooking and distrusted my sense of smell, immediately. I knew nothing was cooking and Mom hasn't turned a stove on in over two years. So I didn't think much of it and took off my hat and coat and hung them. I walked in the kitchen and there was Mom, making hot chocolate on the stove. Wow. I asked, "watcha doin', Mom?"

"Well, I'm trying to make some hot cocoa. I used to make it all the time for Dick and the kids. But I don't think it's turning out."

Stan just about freaked. He didn't say anything but I could tell by his look that he might be getting ready to. And it is scary knowing she might used the stove. But I didn't want to upset her. I said, "well, it looks good. What kind of chocolate did you put itn it?"  She wasn't sure but I think she found chocolate chips to put in it. At least that's what it looked like.

I can't help but think that she may have dwelled on what was said at breakfast. That she may have realized that she'd forgotten (again) about being married for so long and having kids. Time and the concept of it is what she struggles with. The other night we were at Stan's son's for Thanksgiving and she was telling one of the girls about Dad and she asked me how long they were married. I said, "Almost 50 years. Just over 49, actually."

She said, "Well, that can't be right. We just did get married when he died from that Vioxx.  It couldn't have been that long."

"I know, Mom...time flies when you're having fun."