CDs, H-bands, pills and dopes

My grandmother has a home care worker that comes and spends 3 hours with her from 11am to 2pm on Mondays and Tuesdays. While Judi is here I usually go out and run errands, get lunch or watch tv at Sue's house. I always come back by 2pm, when Judi is set to leave. Today I found the two of them trying to figure out how to turn on a CD in Grammy's stereo system. I helped them out and it turns out that Judi burned Grammy a CD of her husband's music. He is in a jazz band and he plays the saxophone. It's pretty great stuff and Grammy really enjoyed it.

Yesterday it turned out that I tired Grammy out too much by looking through old photos. I find these things out because she will get upset or anxious, go to Sue's house and tell her whatever is on her mind, then Sue will let me know later when Grammy is in bed. In hindsight I could see the subtle signs of Grammy getting overwhelmed by the photos. She started out really excited and happy to look through them and telling the stories. After a while she was having a hard time recognizing people and places, even her own kids. I didn't pay it much mind at the time because they were old, black and white, faded and she had 7 kids... I don't remember when she could ever pick them all apart in photos of them as children.

Anyway, today I figured I'd try to let her rest, which means needing to get her to rest a bit in the afternoon. She listened to Judi's husband's CD for a bit, watered the plants and watched some Keeping Up Appearances. It seems to have worked pretty well. It's really unavoidable to upset or overwhelm her every once in a while because there are always new things to trigger it. For example, the photos have been a positive experience that even calms her down when she's feeling anxious since I've been here, until yesterday and it had the opposite effect. The same is true for a lot of 'activities' it seems. She will be happy sometimes to try out a craft or something once or twice, but then she doesn't have an interest in continuing it like a habit. It makes it tricky to figure out the best way to spend time with her.

Overall she does enjoy the rest and even though she says she is bored, it trumps having to do an activity that makes her face her condition. That is why I don't think swimming is in the near future, or church for that matter. She has said things that make it clear that she's concerned that she will run into someone that she knows and have to talk to them. She is afraid that she won't be able to communicate with them anymore and she is embarrassed.

Back to the CD- We wrote Judi a thank you note and I taped it to the calendar in the kitchen so that we can give it to her next Monday when she comes again. Already 6 or 7 times Grammy has asked me if we should write a thank you letter or asked me where I put the thank you note. I can tell already that this will be a constant topic until we give it to her next week. She also keeps on referring to the musician on the CD as Judi's brother, rather than husband. These are two examples of how her mind is working in general. She can't really differentiate between brothers, husbands, sons or grandsons (and double that for females too). She's referred to me as her daughter, or pointed to my aunt's in a photo and suggested that I'd remember them as my sisters. She knows that I'm her granddaughter and if asked directly she would be able to tell you so, but if her mind is working through something else and the relations are just a secondary issue, she mixes them up more than she gets them right.

Something that I'm sure you will all get a kick out of- It's becoming more and more clear that Sol being here is helping Grammy feel comfortable with me cleaning and cooking in the house. Just like the granddaughter thing, she knows that Sol is just my boyfriend, but she constantly calls him my husband. I guess she referred to me as his wife to him yesterday too (I warned him that it might happen so he wasn't too unsettled). So, get this, she thinks that it is good that I'm cooking and cleaning for my husband and she is just getting the secondary benefits. Little does she realize that I'm cooking and cleaning for her and Sol is just getting the benefits! The first sign was when she wanted me to serve him first at dinner. Usually I'm cooking dinner and Grammy is helping in the kitchen. When it's ready I always give her food first and then myself and usually just leave it there for Sol to get his own damn dinner. But when I gave her the plate she insisted that I make a plate for Sol first, "Shouldn't you give food to your husband first?!" I was like, "nooo, I'll give it to him second." And I did.

A new piece of information that is a little more concerning is that it seems that she is taking her anxiety pills at times that I'm not around. I assumed that she was taking one when she went to Sue's in the afternoon, around the time that sundowning was hitting. And I'd talk to Sue at night most of the time and she'd confirm this was the case. I came out of the shower today and Sue had texted me to check the bathroom cabinet to check on the pills that we keep in there. Grammy knows that she has a stash of her own anxiety pills there, and that if she wants to take one in the middle of the day, it's ok. I checked and there were only 3 pills left (usually it starts with about 7), but I haven't seen her take any. I'm afraid that she is taking them in the bathroom with the door closed, by herself. Sue and I decided to keep a closer eye on the number of pills there, and probably keep them in a weekly pill box so we can see if she takes one each day.

And to end on a bright note-

Here's the only funny thing Grammy said today. In reference to Laura and Elsa coming over for several days and doing everything for her, she described herself as "a dope on a log."

Sundowning

I don't know why, but I've been pretty exhausted lately. I think it's a mixture of getting used to waking up early everyday and allergies. It is probably also because I am spending a lot of time at a slower pace of life, less active and less energetic overall. I'm morphing into Grammy.

It's called Sundowning. The term is used regularly in Alzheimer's care. It refers to the anxiety attacks that persons with Alzheimer's experience as it gets dark outside. To me it makes sense that this feeling would come on strongly at twilight. While I was in college I would get very tired and cranky around 5pm in the winter months. I would have to have a cup of coffee or zone out for a bit before I could resume working on stuff (which I would normally try to do for another 6 hours or so). I learned after a couple of years that classes after 5 pm were like torture. It's definitely more of an issue in the winter months than the summer months. In the summer it gets dark and you get to go to bed.

Grammy has fairly regular late afternoon-evening anxiety "attacks". I put attacks in "" because it's not a full-blown melt down. She just seems troubled and will say that she has "that feeling" and that she needs to walk around or get fresh air. Yesterday when it happened I caught her as she was putting on her coat to go outside for a walk. I asked her if I could walk with her and we just went down the street and back and she seemed to feel better. Today she seemed more troubled and she said she was going to walk over to Sue's. I know that since we got here she has gone to Sue to ask for an afternoon anxiety pill, rather than ask me or just take it at home. I figure this isn't really a problem as long as it works for her.

It's funny that the Alzheimer's books said that the person might shadow you. They warn against getting annoyed that they are following you everywhere during the day as you complete basic tasks. Grammy and I have the exact opposite system going on. She would never follow me if I leave the room-- unless I'm going to the kitchen to cook something, then she'll come to see if she can help. It's more like she will go to the kitchen, go upstairs, go outside and I will follow her constantly. If I don't see her within 10 minutes when she's out of my sight, I go find her and make sure she's doing ok. If she steps a foot outside I make sure I'm going with her or know that she's just going over to Sue's. Before I got here, she spent a decent amount of time alone, so rationally I know that she'll probably be okay without my constant supervision. I just wonder if it annoys her, as much as I'm supposed to be annoyed, when I'm always shadowing her. If she does, she doesn't show it. If she does, then tough shit because that's my job.

Sometimes I wish I could just record what Grammy says because it's either funny, out of the ordinary or deep with some memory. Here is a list of things that she said today that I jotted down:

--In the morning we were watching the Today Show and there was a commercial for Crazy Bruce's Liquors and Grammy instantly perks up and says "Your mother used to love that guy!" Hahaha.

--We were watching Good Morning America and they had a stylist named Brad on to talk about the dresses of the SAG awards from last night. Right before they went to commercial after his segment Grammy said, "He has a gay little sound, that guy." I was like, "Well, that's because he is gay." Then we discussed homosexuality a little bit. I'm always impressed that she is so open minded after being raised in the time she was and under so much Catholic teachings. She told me a somewhat segmented story about a time that she had come home from work (she couldn't distinguish where, she kept on saying here, which is possible) and she found a boy crying by the door. She said he was old enough that she wanted to call his mother, but not so young that she had to. She said that she never told anyone about it, that he was just crying and really sad, but not physically hurt. She talked to him for a bit and I guess he just went away. She says that now she thinks that he may have been gay and dealing with that. I don't know why she thinks that, but I thought it was a fascinating piece of a story for her to remember.

--It is ridiculously cute how she says 'poopie'. I can't describe it, but maybe it's because I never heard her say it before. Now she says it about the cat's litter box, or if there is a poopie smell in the bathroom after she uses it. It's really cute, I need to record it.

--We were sitting in the kitchen together, waiting for dinner to cook, and I started really looking at the oven. I take for granted that it looks so normal in my grandmother's house, but if I try to look at it objectively, that is one oolllddd oven. I asked her if it was there when she moved in (in 1979) and she said that it hasn't been changed (not sure if that's the case, but seems plausible). I joked with her how I was just imagining how, sometime in the far future, when a new family moves into the house they are going to look at the stove and be like, omg when is that from?! And she laughed and I swear she said that they would be like "What's this shit?" I nearly fell over. My grandmother does NOT swear. The best part is that the radio or the steam from the stovetop or something got really loud right as she said it as if they were bleeping her out. It was pretty funny.

--On a much more serious/sad note, she sat down after dinner and looked upset and started to talk about how she doesn't feel like she's at home in her own home anymore. She said it feels like she's just getting to know the house for the first time, even though she knows that she has lived here so long. I asked her if she thought it felt different or new because Sol and I moved in. She said that it's not that because the house hasn't really changed since we've moved in (which is true, we haven't left too much of a dent). She made it sound more like it was the result of her memory loss, that everything seems foreign or new to her.

The Help

Hi all: I really appreciate all the comments and followers on this diary. I know Grammy has a huge support network, so I shouldn't be surprised, but it is nonetheless hugely helpful. This entry is more personal than about the day-to-day with Grammy.

Yesterday was a change of pace because my Aunt Pat came down from Newton to spend some time with Grammy. Sol and I managed to get out of the house for a few hours and went out to lunch. I have to say, it's sinking in more and more how lucky I am that Sol is the type of guy that he is. I take for granted sometimes that not every 23 year old male would be willing to live with his girlfriend's 80 year old grandmother, much less one that requires so much attention and care. He's a trooper and insanely supportive.

There is no big news with Grammy that sticks out in my mind, so instead I want to talk about the movie, The Help. My friend Amanda came over last night and watched it with me and Sol after Grammy had gone to bed. I've been looking forward to seeing the movie because I'm definitely interested in the culture surrounding the racial dynamics in the South during the civil rights movement, and it looked like it would be handled in a way that ends on a note of positive change rather than just sad.

When I got off the AT I picked up Ralph Ellison's Invisible Man and began reading it. My senior year high school english teacher told me that I had to read it. I tried to start it at one point, but I wasn't ready to get into it. I read the first 150 pages very quickly just a few weeks ago and I was very taken in by it (then I started traveling and haven't gotten back to it yet). His story begins in the segregated South and I had just walked through more of the southern states than I had ever before. Granted, I walked mainly through mountain towns where everyone was white. But tension was still on display in the form of confederate flags, and many made it very clear that they did not accept outsiders or anyone who is different from them and their kin. There were several moments when I had to stop and think, "What would this be like if I wasn't white?" "Would I be offered this ride that I so desperately need?" Anyway, I have had this stuff on my mind and the movie was definitely interesting and challenging on that level.

But the movie really spoke to me uniquely at this moment because, besides being about racial inequality, it is the story of caretakers and mother-figures. For the first time in my life, I am able to connect on a new emotional level to the stories of women who raise children or take care of the elderly. The movie is about a young woman, my age, who writes a revolutionary book about the inherent hypocrisy in the crippling tradition of hiring black maids to raise (and love) white children. The cycle completes when they children they cared for reach 20 years old, are married and have their own children to be raised by the black maid. As they grow up, these white children are closer to their black maid than their own mothers, but once they are old enough to have their own kids, they are as racist as their forefathers and mothers.

From my perspective, one character in particular was like the chimera of emotionally difficult issues that this movie raises. It was the maid, Constantine, who raised the main character, Skeeter. She was one part maid (to the house), one part mother figure (to Skeeter), and one part frail and aging grandmother figure (to her own daughter/family). All parts of her story were pretty damn sad by the end. I could see Grammy in the maternal role, the housekeeper role and the fading elderly role. It was so sad in Constantine's case because she was forced to continue to function and work as her mind was fading. We didn't talk about it, but I'm sure that between Sol, Amanda and me, there wasn't a dry eye in the house.

Two nights ago, it hit me how devastating it will be when my Grandmother dies. Sorry if that seems morbid to anyone, but I say it out of respect. I realize that by spending this time with my Grandmother, and getting to know how awesome she is, I'm opening up a new emotional level in myself.

Ok, this stuff is pretty heavy for the morning, but it was too late for me to write it out last night. I'm usually not very comfortable getting so personal, but I'm starting to be brave enough to explore these issues and how they affect my life.

Some days are harder than others

Today was a little bit harder than most days. It wasn't anything groundbreaking, but overall Grammy just seemed more anxious and tense throughout the day.

This morning started out pretty good. Grammy even remembered how to turn on the stove to make hot water for tea for herself. She also pulled out her curling iron, curled her hair and remembered to unplug it. She was doing more tasks on her own than I've seen since I've been here.

It was short lived. The rest of the day was full of enough weird behavior to make the earlier moments of lucidity seem more like a fluke than a sign of any improvement. She had ice cream twice today, both between lunch and dinner. I think that having ice cream twice is definitely a sign of memory loss, but I don't think it's a particularly bad one :). The first time I found her in the kitchen (a phrase that I seem to use a lot!) she was pulling the ice cream out of the freezer. She was about to scoop it out onto a little plate because she "only wanted a little bit". I told her she should switch out the plate for a bowl and gave her the bowl. She agreed that it was probably a better vessel to put it in because it was designed better to hold the ice cream (her logic). The second time she was eating ice cream, Sol and I had gone for a run between 4:20-4:50pm. When we got back, she had a little plate with some ice cream on it. The plate ended up working fine because she ate it fast enough, but, ya know... About an hour later I was cooking some vegetables and Sol was picking up our pizza for dinner. Sue had come over after work and was in the kitchen when I opened the fridge to take out some salad dressing. I had opened and closed the fridge probably 5 times already, but Sue is the one that noticed that there was the tub of ice cream in the refrigerator. I moved it to the freezer, and luckily it wasn't too melted by then.

Grammy also took out a piece of bread as we were making salad, waiting for the pizza. She said that she'd save it for after dinner to eat it with some nutella (because--you guessed it--she hadn't had it in such a long time!) Then when we were eating dinner she took it with her and put it on top of her pizza, making it like a sandwich with the pizza crust and ate her pizza that way. She said that everything was good, but she's also pretty polite.

That's the thing. At least my grandmother's nature is of a polite, shy and nice person. I'm lucky that she's not a nasty, cantankerous croon. Really. I'm also extremely lucky that Sol is here, because even though I'm not paying him nearly enough attention, just knowing he's there is a huge relief. And I am equally hugely lucky that Sue is next door. It wouldn't be nearly enjoyable, and most of the time it actually is bordering on enjoyable, if Sue's house weren't next door to escape to every once in a while. Or to go ask questions about how things function in an adult/senior citizen world (i.e. bills, tax stuff, prescriptions, etc.).

Anyway, we took a nice walk around the block today but Grammy still "got that feeling" of anxiety in the late afternoon (between ice creams) and went to Sue's house to take a pill. It seems like she is embarrassed to take the anti-anxiety pill in front of us when she feels like she needs it. So she says that she's going to Sue's and will do it at her house. This is fine, but it's during those times that she isn't in a great mood overall. The pills help a lot, but they make her sleepy. She also got a call from Walgreens while we were running that one of her prescriptions was filled. She normally doesn't answer the phone, and Sue calls in and picks up all of her refills. So it was strange when we got home and she was sitting there with three pieces of paper with different notes scrawled over them. Two were old scrap papers lying around, and on one of them she had written down a note about the call. It read, "Whalgreens farmcy." She was looking at it and looking at me and would say, "I don't know how to spell anymore." Her mood was tense about the prescription until Sue took her about half an hour later. I think she was worried that we would forget to do it based on the fact that historically she would be responsible for it herself, and she now forgets all the time.

I was worried about coming here because I'm normally really sensitive to other people's moods. I feel like I can read people pretty well, and when I sense tension I try my best to ease it because it makes me anxious. Luckily, I'm able to detach myself enough with my grandmother at the moment that I have been handling her bad moods pretty well. The thing is---they are temporary and inevitable. In general she seems to do better when she can focus on cleaning something or looking through old photos or reminiscing about old stories.

I found my grandfather's 200+ page book about our family's genealogy. He spent over three decades researching and compiling the Hernandez-Couture family history into a readable and interesting anthology. There are (luckily) electronic copies of it, and I hope everyone in the family has one (if not let me know and I'll send it to you). I would love to read it, so I think that starting tomorrow or so I'll read it out loud with Grammy. I figure I'll try to rummage a bit through the basement and the attic for old photos or other interesting documents that are lying around. People have done this a lot in the past already, so I'll just see what is left over. The only problem is that walking into the basement is like walking into a torture chamber for me. I get such horrible allergies that I can only spend 5 minutes there at a time. But the treasures are worth it. I didn't know my grandfather very well at all, since he died when I was 6. I did spend a vacation with him, my grandmother and my cousin in Italy the year before he died and I have a couple memories from that. It's really been a treat to read his writing and to get to know him a little better through it. Clearly a very good writer, with a dry and dark wit. I like it. Best line (although I can't seem to find it now) was about me as a baby and basically said "She's awfully cute, even if she does look more like her dad."

The humor in the daily routine

Day 6 with Grammy:

Before I came here my mom tried to warn me that spending time with my Grandmother would at times be like spending time with a toddler. It came up mainly in reference to the importance of going for walks, or running errands outside, during the day in order to make sure she gets some fresh air (she gets anxious being inside all day, but she won't ask to go out ever). My mom said that it may be like dealing with a toddler, where it takes you 20 minutes to get dressed to go outside for 10 minutes. This is kind of true, but I'd say that Grammy is a little quicker than that right now. But there are some ways that Grammy's memory loss results in behavior that is comparable to what we might consider typical of a child.

Case in point: My Aunt Elsa ordered Grammy a new pair of shoes from LLBean and had it shipped to my Aunt Sue's house (next door). Grammy has these old brown shoes that are really comfortable, but they are falling apart. She told me about 20 times in the first two days that people tell her that her shoes are dumpy, but that she likes them and doesn't care because she doesn't go out ever. Every once in a while she would tell me that sometime she will need to go shoe shopping because her shoes are falling apart. Clearly the shoes were on her mind, but she'd change her view on the subject depending on her mood. You must realize, my Grandmother is the type of person who DOES care about those things. She would normally never wear something that looked "dumpy", so her recent acceptance of such things is a sign of her resignation that her life has changed and she can't keep up with the pace of life she once had. Anyway, the shoes arrived yesterday and Sue walked the box over to the house. I opened them for Grammy, she tried them on, they were overall ok (although not as wide as a 7 1/2 W should be). I left the box out because it was unclear whether they would really fit well, and I wanted to be able to pack them up if we needed to return them. Then today, Grammy spent the whole day playing with the box, like a child. She would pick it up as soon as she noticed it again and open and close it and look at the label. She'd notice that the label was for Annette Susan Hernandez (my Aunt Sue next door) and not her name, Annette R. Hernandez. I'd tell her that Elsa ordered it and had it sent to Sue's house. Then she's say "oooh, Ok." and we did that several times. I'd leave the room and walk back in to it and she'd have the box back in her lap, fiddling with it. It really just makes me smile, because she was just sooooo intrigued by that box! It made her day, and kept her busy. I think I can get rid of it now because she seems to like the shoes.

There are a couple of other instances of memory loss that crack me up, and I hope you all can share a bit in the humor of it. One was last night when Sue's cat Velcro came in and sat next to Grammy to let her pet him. Velcro is a 15 year old cat and has a skin disease that is like psoriasis. He has thick, flaky skin under his fur that is pretty gross because it scratches off. Anyway, Grammy was petting him and all of a sudden touched a part of his skin that was that gross flaky stuff and started brushing aside his fur to see "What is under there??" I told her that he has a skin disease, and she would say "Oh yeah...that's right." Then 5 minutes later she'd start petting him and get a grossed out look on her face and start digging through his hair to see what it was again. This happened maybe five times, and I'm sure you had to be there for it to be really funny, but it was cracking me up. She didn't really mind his skin disease, and when I told her matter of factly that he has a skin disease every time she said "oh that's right. I knew that," but it was like watching a repeat reel of a comedy sketch.

Even funnier is that, I swear, 3 times since I've been here she has told me that she's craving nutella. The first time I found her in the kitchen and I asked her what she wanted. She said she was just craving some nutella, and that she hadn't had any in a while but that she loooves it. So I got her half an English muffin with nutella all made up and she ate it happily. Then a couple days later I found her taking a scoop of nutella with a spoon as a snack in the kitchen and she told me how she just loves the stuff, but hadn't had it for weeks. Then today, after eating a bowl of the pork and poblano stew that I made in the crockpot today (delish!), I found her making a piece of bread with nutella and she told me how nutella is just so delicious and she hadn't had it in a month! I just smiled and agreed that nutella is the bomb. It won't hurt her to eat nutella 3 times a week! And maybe it tastes even better when she thinks she's been craving it for a month!

I bring up these moments because it is so important to find the humor in the face of Alzheimer's. It may seem crude at times, but it is really the only way to get through the changes happening. I feel best when there are times that Grammy is complaining or uncomfortable about something and I figure out a way to respond that makes both of us smile, or laugh it off. It's not just about finding the humor in it from the caretaker's perspective, it's just as important to help the person suffering from the memory loss to find some humor in it.

Another positive note to end on is that I found a slew of really old photos in Grammy's drawer in her bedroom. There were several photos from her wedding, a date with Grampy before they were married, and Elena when she was first born in Panama. We put together several pages for a photo album and it was a great exercise. Grammy could recognize the people and as we sat there, organizing them and putting it all together, she could remember more and more of the stories associated with the events that the photos represented. She'd say that it was good to see the photos, because if she can't remember immediately the stories, the more she sat and thought about it, the more she could remember. She told how when she met Grampy, she was in nursing school in NY and he was studying to be a male nurse. Her friends were all women who were

'deathly shy of men," and she was very shy and turned down many date proposals from other guys. She was introduced to Grampy through a mutual friend, but by accident. Then he invited her to go swimming with him and his friends when the other girl he was seeing was too sick to go with them. Then they never looked back. She knew he was a nice guy and she really liked him. He visited her family in Vermont, and eventually they were married in her home town, Barre, Vermont. By eventually I mean in less than a year. When she was 20. Then we looked at the photos of Elena, and she remembered fondly how she was "a little brat that always ran away" as soon as she could walk. :)

Food Stuffs

This morning began with my head completed filled with snot. I have pretty bad allergies in CT, which I knew to expect, but this morning was an unwelcome reminder of how bad it gets. (And yes mom- I'm taking meds). Anyway, I got up around 7:30 and had time to get some coffee ready for me, tea for Grammy and check email before Grammy came down

Grammy's morning routine is usually hanging out in her room until she hears someone downstairs. She'll get dressed and make her bed. Then when she comes down she takes her pills, has tea and cereal with blueberries. The past couple of days it has been routine to get on my case for being up so early. She'll tell me that I don't need to get up for her, that I should go back to bed, and that someone my age should sleep until noon. :) I had that time when I was 14-17. This morning, thankfully, I didn't get the lecture.

Instead this morning she decided to pull up her shirt and show me her bra, because she was complaining that she doesn't like it. I mean really, just imagine Grammy of all people pulling up her shirt to show you what’s under it. Then she did again to show me that she was just wearing a dickie (?). I don’t even know how to spell it because I certainly didn’t grow up with it in my fashion repertoire. It's just funny because Old Grammy would have never done that. My idea of my grandmother is as a very proper and prudish person (as with most people and their grandmother's I imagine). Later we got to enjoy a second awkward moment when the Nate Berkus show was all about sex and your sex life in the bedroom. I went for a run just in time.

Anyway, today I figure I’ll talk about food since that is a constant topic with Grammy and she has had an interesting change in behavior regarding eating. I always remember Grammy as someone who enjoyed food, ate a healthy amount and constantly wanted to feed you. Now she is always making sure that we are fed and have enough to eat (by asking us every hour or so), but she clearly is very uncomfortable with the idea of her eating. This could be due to a couple of changes. She definitely was always thin and active, and maybe now that she isn’t moving around nearly as much she thinks that she shouldn’t eat as much. It could be because she is used to preparing everything for herself and now she feels uncomfortable to rely on others to make her meals. Or it could be because she recognizes that her life began to change when she was losing weight and visited the doctor and they tested her memory. I know that one of the first signs that she was changing was when she was forgetting to eat. Maybe she has leftover anxiety tied to food from this? I’m not sure.

I do know that she almost always says that she is not hungry and pretty much without fail tells you to not make her food. She will accept food if you give it to her, but it’s with varying levels of resistance. In the morning she is pretty happy to receive her cereal. I’ve only had one lunch with her so far since the past days Elsa was here, then her homecare helper, Judy, was around during lunch. Today at noon I asked her if she thought it was about lunch time and she said “Yeah, I guess so” and we all had lunch. It wasn’t a problem. It seems that dinner is the hardest to get her to eat. She’ll be going into the kitchen and munching on bread, or grabbing a pudding around dinner time so she is clearly hungry. But many times at dinner if you give her food she insists that she is full. When I gave her dinner last night she told me that I was “as bad as Sue and Elsa.” Haha. I guess so! ;)

A couple of nights I’ve actually cooked a semi-extensive dinner and I involved her in the process. She can still chop vegetables and crush peppercorns, so I have her do all those tasks. I’m going to suck at chopping veggies at the end of this stay because I don’t think I’ll have practice in 5 months! She does it well enough for what I care about and she’s just happy to help. I suspect that she is more open to eating the food if she had a hand in making it. Again, whether the negative reaction is simply a reaction to being taken care of or an acknowledgement of her memory loss, I’m not sure.

Otherwise, today we went to the food store together and she pushed the cart around as I grabbed stuff from my list. I forgot the handicap parking pass so we had to park a little bit away but she laughed it off with me. She told me about 10 times that she didn’t know where anything was in the store because she’s only been there 3 times since it opened. And that’s fine if that is what she thinks. I think she really enjoyed the trip out. Sol was off looking for jobs so I think she felt like she was doing me a favor by coming with me, which she was since I don’t mind the company. And honestly, if the task takes longer then my day seems fuller.

We also spent a long time washing the kitchen sink today. I think that she likes having us as company for, if anything, the accumulation of more dishes to wash. :)

Also, when I got here she was talking about how she liked the show Keeping Up With Appearances, a British comedy that airs on PBS once in a while. She mentioned several times that my Aunt Elena would call her to remind her when it was on; and I remember watching it with her and my mom when I used to live here. So I just went on Amazon and ordered the set of DVDs and it came last night. So we’ve watched 2 episodes and I think it’s overall positive. I mean, it’s funny and even Grammy thinks it’s funny, so we’re all good there.

Moving in with Grammy

I'm a little behind since we moved in last Friday night (and it is now Tuesday), but I was weary to start this blog because I wasn't sure if it would be worth it. I've already had enough thoughts and experiences that I definitely think it's worth sharing with close friends and family who are interested in Grammy's situation, my situation and (every once in a while) Sol's situation.

We arrived late on Friday night to Grammy's house. For those who don't know, my Aunt Sue lives next door and works at home so she is a constant resource. However, she cannot take full responsibility for my grandmother at this point because she is busy with her job and her own life and it's becoming more and more clear that my grandmother requires constant attention.

One of many smart things Grammy did was having 7 children (which expounded into, like, 16 grandchildren), so she has a large support system. Different family members have visited and spent time with Grammy to keep her life running smoothly and safely and to ease the burden on Sue. My Aunts, Elsa and Laura, have taken alternating weeks spending extended periods of their time with Grammy in her house in order to make sure she's ok. I volunteered to spend from now until June with Grammy because I am in a unique place in my life between things and with enough money saved to survive without a regular paying job.

Right now my plans are to live with Grammy until June, then work for the Green Mountain Club for one more summer, then in late August I will begin graduate school. I have enough saved that I don't need to be saving more money and, by living with Grammy, I have no cost for rent or food. Sol is living with us too and he is looking for a job. An income is more important for him because he has college loans to pay off. In June, he will also go to Vermont to work and later will join me wherever I end up for grad school.

I'm looking forward to spending my time exploring some hobbies. I plan to learn to cook a ton of new things. We're borrowing one of Elsa's crock pots, but I also hope to get a bread maker and a rice cooker. I hope to compile scrapbooks and photo albums with Grammy's help in order to keep us both busy and have mementos for the rest of the family. Meanwhile, I get to watch a lot of daytime tv, clean a house, play with cats and meet up with friends who are around.

Ok-- back to the night we arrived. It was about 10pm and Elsa was staying at Grammy's. We ended up sleeping at Sue's just for the sake of not making a lot of noise upstairs where Grammy was asleep and Sue gave me one of the books that Elsa lent her about Alzheimer's disease. I read part of a pamphlet put together by the Athletic Director for the Arkansas Razorbacks. His wife had Alzheimer's and he became her primary caretaker. He compiled a booklet after years of research and caretaking that offers good advice and forewarns what changes to expect in the person with Alzheimer's and why it is happening. According to the book, Grammy is clearly in stage 2. Stage 2 isn't quite as scary as it sounds. It can last from 2-10 years and it's a time that someone goes from essentially being forgetful enough to not have their old active lifestyle, to bad enough that they cannot wash or dress themselves.

One of the parts that stood out to me the most had to do with how a person's vision changes. It can make it so that the person cannot interpret the colors that they see in a normal way. It gave several examples that are basically associated with a recognition of color and not being able to recognize what it is representing. For example, a light colored wallpaper with dark lines on it may cause hallucinations since the person isn't able to tell that the lines are attached to the wallpaper. Or someone has a dinner of chicken breast, mashed potatoes and green beans on a white plate, but is only eating the green beans. It's because they cannot distinguish the light colored foods from the plate and they cannot tell that they are there. Or if you have a dark colored floor mat in front of the bathroom door, the person may be hanging around the hallways, fidgeting with their clothes, clearly wanting to go to the bathroom but they cannot enter the room because all they see is a dark gaping hole in front of the door. You can take their hands and walk them over the rug and it will be fine, but on their own they just see a gap.

Grammy isn't there yet at all, thank goodness. But she does show several other symptoms of the second stage. She has a hard time recognizing her own clothes and will sometimes think that things are missing. I haven't witnessed this really yet, but I've heard it is happening. Thankfully, she can still dress herself fine.

She isn't able to conduct multi-step tasks. This is why she can't make tea for herself, or deal with the tv. Sol noticed that you can tell her to pick up the remote and she will feel around on her table rather than reach straight for the remote. I think it's because she doesn't initially connect the word "remote" with the object. Then you can tell her to press a certain button to turn up or down the volume, but she will have a hard time deciphering which one. However, she would be able to do it, if you are very specific and break down every step and wait until she completes the one step before you tell her the next.

She washes dishes, but she usually just manages to rinse the dishes under the water and rub it down with her fingers. If you are there, you can put the soapy sponge in her hands and she will use it. But she does not recognize that the dish drainer isn't a dish itself and she will wash it and put it "away" if she can. One scary moment on the first day that I was here involved dish washing. I heard her in the kitchen at the sink and I went to check on how she was doing. She had found the Comet under the sink and had been sprinkling it on the dishes, putting them under water and wiping them with her fingers. I told her that it isn't good to have it on her bare fingers and that she should wash her hands. She did that and let me finish washing the dishes. It's really important to not get angry or stressed out with the person because it will upset them (and really, the thing you want most is to keep them safe and to not upset them--in that order).

The thing is that it's better to go along with whatever story they are telling you, rather than correcting them, unless it's absolutely necessary. The more that mistakes and gaps in understanding or memory are pointed out, the more anxious they get about their own condition. Grammy knows that her mind is going and she acknowledges that it has changed the things that she does and is ok with many of the changes. She just forgets that she's ok with the changes.

One last example of how I am approaching living with her is say she wants a cup of tea. She won't ask for tea, but she might allude to tea, drinking something, or being cold in general. Then I ask her, "Do you want some tea?" and she says "Yes," and shakes her head and adds "but, oh, you don't have to get it!" She tends to get defensive when I insist that she let me do something for her, so once I let her get up and go to the kitchen. After about 30 seconds, I went into the kitchen and she was there looking at the coffee maker and the tea kettle. I said "Do you want some tea? I'll make some anyway for myself" and then she said, very graciously, "Oh, yes that would be nice. Thanks." Things don't always go so smoothly, but it seems like, as long as I have the time (which I do), if I just let her feel like she's going to do something for herself and then help her get it done, she feels better overall about the situation.