Sunday, August 25

Dear Tatum,

Grandma died this morning. She seemed to relax and was quieter through the rest of the night until early morning. I think the morphine helped her through. She started to make more noises around 6:00 a.m.; at one moment she made a face like she was wincing in pain. I called hospice around 7:00 and asked if a nurse could come to the house. When I hung up the phone Grandma made a loud gurgling noise. I went and sat by her and watched her take her last few breaths. I was glad to be by her side and glad to love her.

Love,

Gin

Saturday, August 24

Dear Tatum,

This morning when I got up Grandma was trying to pull her teeth (dentures) out. That's what it looked like. In reality she was trying to put them in; I don't know how they came out. Just the top ones. Thankfully she got them back in, because I have no idea how to do it. I've conquered the hearing aids, so I could probably figure out the dentures. 

She said she needed to go to the bathroom and wanted to get up and go. I told her we could try. I was astounded that (with a lot of help) she made it. I hadn't expected her to get out of bed again. She was more aware and more talkative than she's been in a few days. It's surprising after yesterday, but there are bound to be ups and downs. And really, this is a very small up. 

Millie and Vick came over this afternoon to visit Grandma. Millie hadn't seen Grandma in two weeks because she had knee surgery and had to wait to be able to come over. As it was, Vick drove her over from next door. Grandma interacted a bit--definitely more than she would have yesterday. It was a good time for a visit. In the end, I became a surrogate for Grandma with Millie sharing stories of family members gone awry, but that was okay. Millie has done so much for Grandma, and really enabled her to stay at home, that she can be forgiven most anything. I gave her the dutch oven I knew Grandma had promised her. 

In the evening she removed her bottom teeth. She started to gag a little when I tried to help her get them back in, and then I realized how badly they were in need of cleaning. I cleaned them, and tried to help her get them in again, but Dad and Slip arrived and it was too distracting to do it with them there. She said it was okay to leave them out. 

Slip cooked and sliced and got the BLT's that were to be our dinner ready while I went for a quick walk for some fresh air. When I got back the table was set and dinner was ready on the back porch, where the dining room table now sat. After dinner I got out the strawberry ice cream, God knows we have enough. I also brought out and old jewelry box of Grandma's to look through. It had some old costume jewelry; a paper clipping from when she and my Grandpa were married in Washougal, Washington; her class ring; and a few other interesting items. I was asking Dad to choose the things he wanted, trying to move along with the process, but he was having none of it. "I was only looking," he said, "Not choosing." I don't think he realizes how imminent things are.

We sat on the porch until it was too dark to see, then Dad and Slip were on their way back to Portland. Dad said, "Bye, Mom," as he left.

Grandma was having a hard time breathing and making more gurgling sounds than usual. I set my bed up on the living room floor as I'd been doing since she moved to the dining room and kept an eye on her as I watched really bad television. As the night progressed she seemed more uncomfortable and I finally called Hospice around midnight. I wanted to give her some morphine because Lynette had said it would relax her lungs and help her breath but I felt like I needed permission. I knew it was okay, but didn't feel good about drugging Grandma and just wanted someone else to agree that in that moment it was the best thing to do. She also seemed uncomfortable and I wanted to help her feel better. I got the permission I wanted and gave grandma a small dose of morphine. It seemed to help.

This was the most upset I've been throughout my time with Grandma. I called Sofie a little after midnight and she was nice enough to help me pull myself back together. 

I stayed up until about 2:00 a.m. watching "The Man with the 132 Pound Scrotum" (the Orient Express was good but just to slow for that time of night). Grandma's breathing was better by then and she was quieter.

I finally went to sleep.

Love,

Gin

Friday, August 23

Dear Tatum,

Slip came for a visit and brought me lunch today. Falafel from Wolf & Bear. She also gave me the chance to run errands. I went to the bank, the post office, the library, and the grocery store. She stayed for quite a while and kept me company. We talked about aprons and bicycles, among other things. 

Today was the most unresponsive Grandma has been. Slip tried to talk to her, but Grandma couldn't even focus her eyes on Slip and she didn't say anything. It was a little unnerving.

At the grocery store I felt especially sad when I realized there was nothing I could take back for Grandma. Yesterday she had a few bites of ice cream, today a few bites of applesauce. Usually I'll get her something sweet--a pastry or chocolate--as a surprise, but she won't eat any of that now. The candy she insisted on Monday is still on the counter, minus one Hershey bar. It really hit me.

I am good about containing myself around Grandma and around others, but when I get alone outside the house, mostly when I am driving in the car, I sometimes lose it a little. Especially now that it's so close. And the person she was is essentially already gone. 

Love,

Gin

Busy Work

Thursday, August 22

Dear Tatum,

Grandma's stay in bed on Wednesday was restless. While she slept for much of the day, she was also busy moving blankets around the bed, moving her legs, and generally seeming uncomfortable. While she seems uncomfortable, she reports no pain. She was just restless--this was Lynette's word for it.

She was also restless all through the night. I was up often checking on her. Once, in the morning before the light came, I found her sitting in the bedroom chair. I asked her, "What are you doing here?" and she answered, "Waiting." "Waiting for what?" "I don't know." "Well let's get you back into bed, okay?" "Okay." 

I had respite set up again for today--this time a volunteer through hospice. She was coming from 11:00 to 3:00. I was looking forward to the massage I had scheduled, but had to cancel. Instead, I went to the local funeral home at 11:15 to get funeral arrangements in order. While I was there, Lynette called and was on her way to see us. 

I met Lynette at the house. She checked Grandma over: listening to her heart, checking her blood pressure, oxygen levels, and asking her questions. Afterward we went into the living room to talk. Lynette explained some of the different drug-related options available to Grandma to make her more comfortable--mostly related to her restlessness. We decided against the heavier, valium-like drugs that would knock her out more, and decided on Haloperidol. I'm only supposed to give it to her as needed. Lynette also suggested we bring in a hospital bed. A hospital bed definitely marks a turning point. She also said she thinks Grandma has a week to 10 days. 

I went for a quick walk, then to the eye exam I had previously scheduled. I was back at the house at 3:00, blurry-eyed. The hospital bed was delivered soon after. I went to check on Grandma while the delivery man set it up and found her lying sideways in bed with her legs hanging over the side. "Are you trying to get up?" "Yes." "Do you want to go to the bathroom?" "Yes." I helped her up and to the bathroom. She took such slow, small steps that once she'd lifted her heal I put my foot under hers to help her move forward. She slouched on the toilet and sat banging her hand on the rail (part of the restlessness). The hospice delivery man (who also delivered the oxygen and was very nice) helped me quickly make the bed. I cleaned Grandma and helped her walk to her new bed where the dining table had been an hour before. 

Michigan, Van, and Slip brought me Du Kuh Bee Korean noodles and Bok Choy for dinner. It was nice to be able to share the events of the past few days. We ate on the porch, where the table is now. 

Love,

Gin

Wednesday, August 21

Dear Tatum,

Wednesday was the first day Grandma stayed in bed. She had no interest in getting up this morning, no interest in eating. I went and checked on her regularly, helping her go to the bathroom or change her pants when needed. She slept the day away. 

The nurse, Lynette, had come on Monday and noticed her breathing was a bit more labored--she called it panting. It remained the same on Tuesday. She seemed more tired, but still doing her normal routine. I called Lynette and she decided to send over oxygen to see if that might help. The one amazing thing about hospice is once they decide you need something, they get it to you almost immediately. I listened to horror stories of people not following the guidelines of using oxygen correctly, signed all the papers agreeing to keep an open flame at least 5 feet away from the oxygen, put the warning up in the window about the use of oxygen in the house, and then it was delivered. Grandma used it for a while. I'm not sure that it made much difference. It's a comfort measure and her choice to use it. She pulled it out after a bit. 

Lynette says Grandma may just be tired and in need of rest, or it may be a turning point. Given that she had the social worker deliver paperwork about what to do in the case of death, I'm thinking she believes it's the latter.

I managed to get Grandma out of bed at 7:00 p.m. to watch Jeopardy and Wheel of Fortune. I also got her to eat half a piece of toast with strawberry jam, some cantaloupe, and some strawberry yogurt. She ate it in between napping, then went back to bed shortly after Wheel of Fortune. 

It was the first day where it felt like she was truly declining. 

Love,

Gin

Respite

Dear Tatum,

Tuesday was my first real respite since July 13th. It's not like I've been housebound--I've been able to go to the grocery store and the library and for walks around the neighborhood. I've also been able to take Grandma places: to Michigan's for dinner, Grand Central for breakfast, and no fewer than six different ice cream shops. But to have sometime to myself, to take a real break--this was the first time for that. I had five hours. 

I met Slip in Portland and we did a little high-end-can't-buy-anything-because-it's-all-outrageously-priced shopping. I guess you'd call it window shopping, even though we did go in through the doors. It's nice to see these beautiful things and wonder at the people who have the money to buy them. 

Then we had a progressive lunch. First we had mole covered tater tots at Bunk with queso fresco and avocado. It was delicious, but about halfway through I started wondering where the tater tots came from--frozen, we agreed--and then Slip started wondering about the mole. We finished. There was no choice about that; like I said, they were delicious. I thought about them later and decided that was the last time I'd ever have them.

Slip at Roman Candle.

After this we went to Roman Candle and were overwhelmed by the beauty of everything. The pastries in the case, the menu, the amazing tables made from  Oregon Walnut… it goes on. After our second lunch stop--we shared a chickpea and kale sandwich which a pole bean salad (so much healthier than the first)--we made a stop at Townshend's Tea. Next, a quick trip to the fabric store where I could not figure out how much fabric I needed so left empty handed. I had a fun time with Slip; it was just what I needed, but I was running late so made a bee line for Woodburn.

I called and told the respite person, Debbie, that it was okay to go--I was on my way. When I got home Grandma was waiting in her chair for me to change her pants. She hadn't gone the whole time Debbie was there and waited (as much as she could) for me. 

Love,

Gin

Candy

Dear Tatum,

Monday evening was another interesting trip to Mega Foods. It started with me telling Grandma I was going out for a walk. Her response, "Okay, I'm going out to a candy store very shortly... I don't know where a candy store is." "What kind of candy do you want?" "I won't know 'til I see it." I asked, "How are you going to get there?" and we had the car conversation again. She insisted she could make short trips and I insisted she couldn't. In her defiant way she asked, "Who says?" and I told her, "Everyone!" and then I listed everyone I could think of. We did our back and forth until I offered to take her to the store for candy. "Well, if that's the only way I can get there," she said.

So we went to the store. I got her a cart to push rather than using the wheelchair. It worked well although I had to do a lot of the steering. When we got into the store she headed directly toward the ice cream aisle. "I thought you wanted candy," I said. "Well I want ice cream, too." "You know we have two full tubs of ice cream at home?" "Yeah, but I want more." "Okay, but how about we get the candy first and then get the ice cream since it can melt?" She ignored me and headed directly toward the ice cream aisle. She chose a tub of Tillamook Strawberry. She walked down the aisle staring into the freezers. I offered to help her find what she was looking for, but she didn't know. It was another "I'll know it when I see it" moment. I think she just wanted to be out in the world. She took a right at the end of the ice cream aisle, gazed around, then said, "I need to find the bathroom." I panicked for a moment; I hadn't brought the diaper bag. If we didn't make it to the bathroom in time we could be in trouble. The bathroom was on the other side of the store in the front--we were in the back. We maneuvered our way through the aisles and around other shoppers. We left the cart with the lone tub of ice cream by the bathroom entrance and made it just in time. It was a close call.

The candy aisle wasn't far from the bathroom, and we went there directly after. She chose two Hershey bars, Reese's Peanut Butter Cups, and M&Ms. The woman at the checkout was very patient with us as Grandma methodically counted out her change.

It is hard to convey the stress of theses occasions. Grandma has always been a bit on the quiet side, but she has recently become almost non-verbal. So when I ask her what she needs or where she's going she rarely answers me and just keeps moving along. This can be particularly challenging in public, when you're trying to make sure she is safe (doesn't fall) or determine what she wants. And given her current appearance (near death) and movements, we do draw attention. Those awful fluorescent grocery store lights don't help either. The whole scene had a surreal, dreamlike quality, and I was glad when we were back home.

Love,

Gin

Sunday, August 18th

Dear Tatum,

This Sunday we met Dad for breakfast at Grand Central, where Slip works. I suggested toast, eggs, and bacon for Grandma and she agreed to that. The week before I ordered her a breakfast sandwich and it was a little difficult for her to eat so this seemed like a good option. When the meal came, she looked at it and said loudly, "I don't want that!" Then, "I can't eat that! That's too much food!" And so on. Dad offered, "But that's what you agreed to." We reminded her she said it was okay not ten minutes before. I said, "Just like always, eat what you can." During this discussion my cup of soup arrived and she said, "Now that looks good." I offered to trade but she wouldn't. I buttered her toast and showed her the jam and she gave in to eating her breakfast, but she wasn't happy about it.

I went over to Slip at the counter to get some bread to take home and told her how frustrating it's been to feel like I'm doing something wrong all the time. I was feeling very frustrated. She assured me I wasn't doing anything wrong. While I know that's true, it's hard to have Grandma direct her frustration at me. In the beginning she was so happy to have me helping, but now she is tired of it and s often unhappy when I try to help her, especially when we're around others. 

In the afternoon, Dad came to Woodburn for a visit. There are certain patterns to Grandma's actions. When she needs to go to the bathroom, for example, she shifts in her chair, reaches for her cane, and pushes the foot rest away with her feet. These things happen in slow motion. When she shifts in her chair, I often ask if she's headed to the bathroom--she usually is. On this day I asked if she was going to the bathroom and she snapped with, "Why are you so concerned about me going to the bathroom?" Remember I said she acts out when others are around? I explained, "You need help when you go to the bathroom. When you go to the bathroom, I go with you to help. If you don't make it to the bathroom, I have to clean it up. That's why I'm concerned about you going to the bathroom." 

Shortly after this, Grandma got up. I didn't ask her where she was going. She walked over and turned on the fan. From there she went to the back door, and before I could get there, bent over to move the stick she likes to put in the sliding glass door as an extra "lock." There was no reason to move the stick--she moved it about an inch. I went over and told her she couldn't do that! She is far too unsteady to be bending forward like that--it is just too close to falling forward on her head. She did not like this. She gave me the sour-faced silent treatment. She sat in her chair at the kitchen table defiantly--she hasn't sat there in weeks. I asked her not to get so frustrated with me for trying to keep her safe. I reminded her that it's my job to keep her safe and I was just doing my job. I don't remember her response, but I think it's because she didn't really give one, but just sat in her chair with the sour faced look on it. 

I sat back down, looked at dad, and said, "See?" He said, "I do, and you're doing the right thing." It helped a little.

Love,

Gin

Picnic in the Park

Dear Tatum,

Michigan invited us to a picnic with music in the park near her house. I was surprised that Grandma was up for it, but I am always happy to get out of the house, so we went. 

We had a new wheelchair delivered from hospice today and that made things a little easier. It's a real wheelchair rather than a transport chair. It's a little heavier to load and unload, but easier to maneuver on the ground. I packed the extra clothes, rubber gloves, wipes, and off-brand Depends (the adult version of a diaper bag), and we were off. 

We stopped at Michigan's house, loaded up the picnic food, blankets, and chairs, and headed to the park. A nice man let us park illegally so we didn't have to park a mile away. We found a good spot in the grass and planted ourselves there, not far from the bandstand. We ate. Even Grandma ate, something you can't always count on. It started to rain and I thought we might leave, but it let up quickly enough. Grandma didn't even complain. Michigan's neighbors and friends arrived and joined us. 

At one point, Grandma was looking around for something and I asked her what she was looking for. Her response: "Maybe you should mind your own business." In addition to renaming me Ginger (read: forgetting who I am) she has taken to getting quite frustrated with me. It presents itself rather passively: sometimes she'll ignore me and other times she'll respond with a mocking tone. It's generally subtle, but easy to detect if you're me. Eventually she told me she was looking for her cane and I handed it to her. I explained that I moved it so she had more space for eating. I added  that I offered to help because I probably could. It doesn't do much good to explain such things, but I always hope it will have an impact. 

On the car ride home I asked her if she had a good time and she said, "Yes, better than I expected, even though it was loud." 

Love,

Gin

Ginger

Dear Tatum,

This morning Grandma came into my room and asked for help in the bathroom. I helped her (and cleaned the poop from the floor) and she decided to go back to bed. As she was getting into bed, she called me 'Ginger,' then corrected herself and said, "Your name's not Ginger, is it?" "No, Grandma, my name is Jenny." She asked, "Was that your sister who helped me with this [holding up her hand] last night?" and continued, "You don't have a sister, do you?" I replied, "Do you know who my sister is?" "No," she said. "My sister is Sofie." "Your sister is Sofie? Well that doesn't make any sense."

Later, in the living room after breakfast, Grandma said out of the blue, "I can't believe Sofie's your sister!" "Why not?" "I don't know, it don't fit." "Why not?" "I don't know." She continued, "Well that wasn't Sofie last night operating on my hand?" "Nope." "Well who was it?" "It was me." "That was you?" "Yep."

These conversations are becoming more frequent. I mentioned them to the nurse and she dismissed them as forgetfulness, but I know they are more than that. 

Love,

Gin

A Fall

Dear Tatum,

Grandma fell. She's fine. I wanted to kill her.

Often, when I leave the house, I remind Grandma that she's not to go outside on her own. Specifically, she's not allowed to go out to the garden. She is too unsteady on her feet and while the trip is a short one, it requires travel on an uneven deck and a step without anything to hold on to. 

When I first brought Grandma home I was largely confined to the house because of the frequency of trips, or missed trips, to the bathroom. That being largely under control, I have been able to leave for long enough to go to the grocery store or the library. Yesterday it was the grocery store. When I came home, Grandma was not in her chair. A quick glance into the bathroom told me she wasn't there either. I went into the kitchen to put the groceries on the counter and spied a grey head just outside the kitchen window. It's where the faucet to turn the water on for the garden is located. It's where she's fallen in the past. It's where she fell on one of my visits here and why I replaced the decking, which has since warped because I used nails, not screws, and didn't seal it with anything. It is not a place where she should be. She knows this.

I went outside to find her on her feet, seemingly unscathed. I chastised her for being out there alone. I was not unkind, but I did let her know I was angry and disappointed. Had she fallen? Yes, she had fallen. She was clearly shaken. I helped her onto the deck and then noticed the blood on it. "Where are you hurt?" I asked. She raised her hand to show me the cut on her finger and the gash between her knuckles. Small wounds considering the possibilities. I got her inside and started cleaning her up. 

For quite a while Grandma has had a lump on her right hand between two knuckles. This is what Grandma opened up from her fall. Whatever was in it came out and it was solid and white and still attached to the inside. I called hospice to talk to the nurse and she clearly did not understand what I was trying to describe--she compared it to a zit. But this wasn't something that was coming out--it was still attached. The nurse came to look Grandma over today, looked at it, and suggested we just let it heal over time. I asked about the white stuff, and even after looking at it she didn't know what I was talking about. I suggested she clean it more and look closely. She did, and afterward saw my concern. She thinks it's a tendon. She called the doctor and made an appointment with him to look at it tomorrow. 

Grandma did not like my admonishments and got grumpy with me. I think she was scared and also embarrassed. I know she is frustrated. Given all this, she still doesn't understand that she shouldn't go into the garden by herself. Today she suggested that if I can go into the garden by myself, then she should be able to as well. I am thinking I am back to spending more time in the house.

Love,

Gin

Update: We went to the doctor and he basically pulled most of the white stuff out. He said it was a cyst and basically filled with an oily build up similar to wax. Weird what our bodies can produce. We just need to keep it bandaged and it will heal with time.

What's Your Name?

Dear Tatum,

This morning Grandma got up from bed and sat in her chair as she does every morning. She put her ears (hearing aids) in as she does every morning. Then she looked at me and asked, "What's your name?" I said, "Grandma!" And she said, "It's not 'Grandma.'" I looked at her in quiet disbelief and told her my name. "Jenny," I said. "Oh!" she said, "Jenny. Just like this here." She pointed to the slip of paper near the phone with my name and number on it. "Yes, Grandma, just like that."

Love,

Gin

This is Your House Now

Dear Tatum,

We had company a few nights ago. First it was Vick and Millie over for their usual 7:00-8:00, Jeopardy and Wheel of Fortune time slot. Then it was Michigan, Van, and Slip arriving with armloads of food for dinner and beyond. It was an enjoyable evening; we ate on the back porch and had lemon bars for dessert. 

When everyone had gone, Grandma and I settled into our chairs. After Grandma had been asleep in hers for a while I suggested she go to bed. Her response: I wonder how the dishwasher's doing? Mine: It's doing just fine, I've been taking care of the dishes. Grandma: Well I want to go see. Me: Okay, let's go take a look.

On the way to the kitchen she made a small side trip to the sliding glass door and started poking at the screen. "What are you doing?" I asked. "Just seeing if it's closed," she answered. "Yes, Grandma, I always keep it closed, you know that."

In the kitchen, she opened the fridge. "Grandma, what are you doing?" No reply. She reached in and precariously took out the yogurt (artificially flavored strawberry)from the back. Once she took that out, she reached for the second, unopened container of yogurt. I stopped her and told her she didn't need the second container. At this point she snapped with, "You don't want me in the kitchen! This is your house now. Fine, you can have it!" I said, "No, Grandma, this is your house, I'm just taking care of things for you, and right now I can't figure out what you're doing because I thought you were coming to look at the dishwasher. But I can see you want some yogurt, so why don't you go ahead and have some." She said, "You don't want me in the garden, you don't want me in the kitchen; it's not my house anymore." She took in the sight of the kitchen with boxes of fresh fruit--cantaloupes, watermelons, peaches, and plums--covering the counters. I could see why she didn't recognize it as hers. She ate her yogurt out of the container.

I said, "Grandma, I can understand how you feel this way. I know you're used to living on your own and doing everything, but it's not an option anymore. I'm here to help you." She said, "I just want to be a part of things." I told her, "You are part of things; you're the center of everything. You are why everyone was here. Vick and Millie were here because of you, Michigan and Van and Slip were here because of you. I'm here because of you. You're a part of everything." "Well, I don't understand what happened." "What do you mean?" "Well, Vick and Millie were here, sitting in their spots on the sofa all comfortable, and we were all having a good time. Then Michigan and Van and Slip came and Vick and Millie left. Why'd they come and make them leave?" "Vick and Millie were already leaving, Grandma; they do the same thing every night. Jeopardy and Wheel of Fortune were over. They'd already said they were on their way home. Michigan came and gave them a bunch of food to take home with them. Vick and Millie were happy when they left. It was okay." "Oh, well I didn't realize that. Can I go to bed now?" "Do you want to look in the dishwasher?" She looks in the dishwasher with approval. "Now can I go to bed?" "Yes, Grandma, you can go to bed whenever you want."

Love,

Gin

Things They Don't Tell You

Dear Tatum,

There are things they don't tell you about caring for someone who is dying. One of those things is the intense feeling of responsibility one may assume. Like the responsibility for them dying. If you're the one who signs them up for hospice, if you're the one who decides to stop their medication, the responsibility may seem like yours. Even when they are a part of the process, there and in agreement at every step, you understand their mental capacity is diminishing and they do not always understand, or when they do, remember. Even when you confer with the relatives and they agree, it feels like you're making the decision on your own. And then, when they start to feel ill, when their legs swell and you can hear their congestion and the fluid in their lungs, you wonder if you have made the best decision in taking them off all medications. You know there is something that can help but you feel it will only prolong the inevitable. You feel your goal is to help them die quickly (and you think by taking them off all medication this will happen), but you also want them to be comfortable. And so you relent. You give them the water pill and they feel better. There is relief, they can walk better and their strength returns for the time being. Whereas you thought they would be bed ridden within days, you begin to reconsider. You reassess your judgement of the nurse, whose demeanor you still don't like (too chatty with irrelevant stories, obviously trying to make a connection yet failing), but whose suggestion to continue the water pills as needed was probably a good one, even though it seemed (still seems) counterintuitive to you. You feel like someone's  life is in your hands, and it is. While you know they'll die no matter what you do, you are responsible for how it happens. You are torn between your desire to care for them as best you can (which typically means keeping them alive) and your desire for them to have a quick and comfortable death. You want them to live forever, you want them to die quickly. Your brain struggles with the dichotomy of simultaneously wanting both. This is constantly on your mind until you come to the realization that you are not, in fact, killing them. That you are giving them the best care they can get (even though an extra 50 pounds six inches would help) because it comes with love. That they are thankful and you are thankful.

Love,

Gin

Beach and Vernonia

Dear Tatum,

Two Sundays ago we went to the beach and stayed overnight at Michigan's mom's house. Michigan and Van made us a very nice dinner with pork and potatoes and squash and a salad. I brought Ben and Jerry's for dessert, something I never buy at home, but I thought we could use a little bit of Vermont at the table (even though it's owned by Unilever, I know). Grandma's typical reaction to suggesting she go anywhere has been something like a "harumph" for the past 20 years, maybe longer, but she has been wanting to get out of the house more. She seemed happy to be at the beach, but the first thing she said in the morning was, "I think we should go home now." I chalked it up to morning time disorientation and we all went out for breakfast at the Blue Scorcher in Astoria (I had the cardamon & honey latte and she had a hot chocolate). I bought a wheelchair on our way out of Woodburn and after breakfast we drove to Seaside and I wheeled Grandma a small distance down the promenade. This was short-lived as it was a cold and bumpy ride, but I was glad we did it. I'm not so sure about Grandma, but she survived and maybe even enjoyed it a little, although she wasn't eager to admit it.

Grandma as a Klimt at the beach.

We drove through Vernonia on the way to the beach, where Grandma lived for somewhere near 73 years. She moved there in 1923 when she was 5 years old. She pointed to the spot where her parents' house was, near where the high school stood until this year, and we visited her old house and the nearby mill pond. My great-grandparents moved to Vernonia from Sumrall, Mississippi for work at the American-Oregon Lumber Mill. Grandma's mom, Cecelia, rode the train to Oregon with her four children: George, Desmond, Marguerite (Grandma), and Vivian, the oldest 8 and the youngest under a year. Lillian was born a few years later. Their father, George, drove ahead of them from Mississippi in a Chevrolet with three other men. And there Grandma stayed until 1996, when she moved to Woodburn at 78.

Grandma, 1926 or 1927. Her mom kept her in ringlets.

Love,

Gin

P.S. It was reported in the news today that a hand was found washed up on the beach in the town we were at. For real.

August 3, 2013

Busy Work

Monday, Before Breakfast

"I need to see Dr. Zawala."

"Dr. Zawada?"

"Yes, Dr. Zawada."

"What do you think you need to see her for?"

"Well, that pill I take on Mondays. I haven't taken it for a while and it's all messed up. I don't know what to do about it."

"Remember when you went to the French Prairie they started giving it to you on Wednesdays? I gave it to you last week. You just didn't realize it. And you're going to stop taking almost all of your pills soon, remember?"

"Now why am I doing that?"

"Because you're at the end of your life, Grandma, and we're trying not to prolong it."

"I don't know what to believe or what to think. Am I dying that quick?"

"Well, Grandma, remember Dr. Zawada said you had about three months? Remember they found a mass in your intestines?

"So what do I do now, just sit here and wither away? That doesn't give me much to..."

"Do you feel like this is the first time you're understanding this?"

"No, I... Dr. Zawada was the one who told me first. Well when I feel good, I question whether they're right or wrong, but I have to believe her and I don't know what else to do about it other than just sit here. I'm up a stump, too. I don't know what I'm supposed to be doing."

"You just go along like you've been going along. How do you feel about it?"

"So be it."

"Are you sure?"

"Well, yes, as much as possible anyway. I wish I could just go to bed one night and have it be over."

"I wish that for you, too."

"Well, I guess I can just sit, dammit."

"What can I do for you, Grandma?"

"Nothing. Absolutely nothing. You're the joy of my life."

"Are you feeling sad?"

"Probably yes and no. It's going to be the end and I know... it's going to be the end, so be it. I don't know any other way to say it."

July 28, 2013

Dear Tatum,

This morning at breakfast Grandma said, "I'm gonna run up to the store and buy some ice cream." "You've got ice cream in the freezer," I said. "I know, but I want a different kind. I'm just gonna run up to the store." "How are you going to get there?" I asked. "I'll borrow you're car!" she said, which is sort of a joke, because it's her car but I've taken it over. "You can't drive," I said. "Yes, I can! Those people in charge over there told me I could drive to the grocery store!" She vaguely pointed in the direction of the French Prairie when she said this. "We've talked about this, Grandma, and you can't drive anywhere, not any more. Your reaction time is too slow and it's too dangerous. We've talked about this before, and you agreed." "Well, that's true, but I still think I could drive to the store." "You could, but it wouldn't be safe, and we don't want you to take the risk." "Well, I'm not trying to pull one over on you," she said, to which Dad chimed in, "Yeah, and I could tell a tall tale, too!"

After breakfast, she seemed to forget about the ice cream and slept the early afternoon away until people started to show up at 2:00 for the family picnic. She sat in her chair all day while family and friends converged around her, chit chatting, talking about old pictures and the like. 

After everyone left, she decided she needed to go to the store for ice cream. NOW. She went into the spare bedroom to get money from her stash. I got her wallet and showed her that there was $18 dollars in it and that was probably enough for ice cream. She agreed. After getting her shoes on she went back to the bedroom and started to put the money envelope into her pants pocket. I reminded her again of the money in her wallet, to which she replied she didn't think that was enough. We added another $20. 

On the way to get the ice cream, I asked what flavor she wanted. "I don't know," she said, "I don't remember." "No idea?" I asked. "Nope, I'll know it when I see it," she said. She reminded me where we were going. She also said, "You can come in with me if you want to, but you don't have to. You can wait in the car if you want." I told my 95 year old, shuffle when she walks, dying grandmother that I would be going into the store with her. 

At the store, she went directly to the ice cream aisle. She looked at the Umpqua, she looked at the Tillamook, and then she walked further until she was deep into the pizza section. "You've gone past the ice cream, Grandma. You're in the pizza now." She gazed at the pizza boxes. "That's pizza, Grandma, not ice cream. The ice cream's back this way." "Well dammit!" she said with some frustration. "Come back this way and I'll show you where the ice cream starts," I said. 

When we got back to the ice cream, she walked passed the Tillamook and passed the Umpqua, her two preferred local brands (local, but with artificial flavor--my concern, not hers) until she came to the Dreyers. She stared into the case. "Do you remember which flavor you wanted?" I asked. "No," she said, "I'm just looking." "Can I get some out of the case for you?" "I guess I'll take a chocolate and a vanilla." "We already have vanilla at home, are you sure you want more?" "Yes," she said, and that's when I noticed it. The sale tags on the Dreyer's ice cream. "Did you want to come and get ice cream because you saw it on sale in the paper?" "Yes," she said, and then it all made sense. The veil was lifted and her somewhat odd behavior explained. Why she couldn't just tell me there was a sale on ice cream I will never understand. 

I pointed out that Tillamook was also on sale--the sale sticker was just up too high for her to see it. We put the Dreyer's back and she chose Marionberry Pie and Vanilla.

Love,

Gin

Three Small Things

Dear Tatum,

1. After Grandma and I got home from our visit with Dr. Zawada last week, my step-dad sent me a text with a picture of my mother's grave that had just been put in place. It was a little overwhelming to receive this on the same day of Grandma's diagnosis. 

2. My mom was considering traveling from North Dakota to go to her 20th high school reunion next weekend in Vernonia. It's the same weekend as the Jamboree I was hoping to take Grandma to. I loved the Jamboree as a kid--especially the swings that went in a circle. I may stop by to say hello to these strangers she went to high school with. I may not. I may. I'm not sure what the purpose would be.

3. When dad came down for the first time after hearing Grandma's diagnosis, he walked into the house and asked her, "How are you?" Grandma said, "Okay." Dad sat down and turned on the TV. You know how some people think I'm emotionally disengaged? I offer Exhibit A. 

That's all for now.

Love, 

Gin

Remember the Man From Walgreen's?

Greetings Gin,

It was delightful to find you skipping through the Library halls today. I
hoped somehow you might surface in the waves of serendipity one more time.
Vermont is so lucky to host your incandescent self, and you Grandma is indeed
blessed to have you.

I am glad that you may stay a little longer in Woodburn, - maybe you would
have time for a coffee with me, although I know you are diligently looking
after Grandma. My phone is (***) *** ****.

This Sunday I am preaching at Christ Lutheran Church in Aurora, just down the
road - on the gospel text of Mary and Martha, while Pastor Craig is
inexplicably cycling down to Northern California with two other pastors on the
lam from their congregations.

Who would you say that you identify with more, Mary or Martha?

Yours most sincerely and with joy for having seen you again!

Nigel

July 18, 2013

Dear Tatum,

In the first letter I sent you I wrote, "When people ask me how she is, I say she’s dying, but it’s slow. And that’s how it is." Well, the results of the colonoscopy and colonography have confirmed what I felt. I could say it before under the premise that anyone who is 95 years old is dying; after all, in a sense we all are. But now it's been confirmed. At Grandma's appointment with Dr. Zawada on Thursday she told us what Dr. Epstein had found: a mass growing in her intestines. There is evidence it is fast growing because they did a scan in January and it wasn't there. I can tell you this: it is much easier to say someone is dying theoretically than to have a doctor tell you that someone you love is dying. It did not come as a shock. It came as a shock. 

Dr. Zawada is convinced it's cancer and we believe her. We are not sticking a needle in Grandma to find out more. Dr. Zawada says Grandma would not come out of the hospital if she went in for surgery and we believe her. Grandma will not be getting surgery. Dr. Zawada recommended hospice and we agreed with her. Grandma will be entering hospice. 

Dr. Zawada also mentioned the Family Medical Leave Act. I wrote to my superintendent the minute we got home and was granted a 12 week leave by the next morning. I am so fortunate. I will be staying with Grandma to care for her, hopefully for the duration. 

Everything just changed.

Love,

Gin

Cups

July 16, 2013

Dear Tatum,

Grandma had her colonoscopy today. She actually had two: one with a scope and the other a colonography. That's because, as Dr. Epstein explained, he couldn't finish the colonoscopy with the scope. This could be a concern, but we won't know until Monday, when he's asked us to call for the results. That seems like a long way away, but in the meantime he's given us a list of reasonable modifications to make to her diet. Basically, she needs a white diet: bread, pasta, rice, potatoes, yogurt, etc. It is pretty close to the opposite of mine.

Grandma was pretty worn out from her day and a half of fasting and long morning of procedures. She was happy to have Pad Thai takeout for lunch when we got home, and spent much of the remainder of the day napping, which is not unusual.

I've made an appointment with an elder care advisor on Monday to look at a few foster homes closer to family. I've presented Grandma with the numbers: twice as much care for half the money at a foster home, and I think she is considering it. 

I have my own reasons for wanting Grandma to stay home: it is my refuge once or twice a year. The one place where I can stay in my pajamas all day and am encouraged to eat ice cream every night. A place to be loved and to relax. I have spent time with Grandma in the summer my whole life. If Grandma moves, there will be no more refuge.

Love,

Gin

July 15, 2013

Dear Tatum,

Sunday was better than Saturday. The goodness of a day is measured in how many pairs of pants Grandma goes through: on Sunday it was only two. I have noticed I've started using "we" for everything. I've even said, "We are getting a colonoscopy on Tuesday." Where does that tendency to use "we" come from? I'm sure some linguist knows. Grandma is getting the colonoscopy; I am not. 

Have I mentioned that Grandma has to take laxatives for the procedure? I understand the necessity, but am not excited about giving laxatives to my incontinent Grandma with diarrhea. Thankfully, the doctor went easy on us and she doesn't have to do the typical regimen. Just a pill the evening before and one the morning of. She also has to fast, and this should make things a little easier (for me, not so much for her). There will be less to move since nothing really stays.

Monday was a whirlwind. The Home Health nurse, Katia, came at noon and was here until almost 2:00; she was only supposed to be here for an hour. She went through paperwork and assessed the house and Grandma. She also cleaned out Grandma's wound on her ankle from when the screen door attacked her over a month ago. One of the problems with being 95 is that things don't heal well. A small skin tear has turned into a hole in her leg. It didn't help that French Prairie ignored it. I'm not making this up. It was clearly getting infected and they only changed the bandage but didn't clean it. This nurse cleaned it out and it looked much better within a day. 

Katia was a great help, but James was the star of the day. He came from a Home Care agency I'd contacted. He explained so many things! Like the difference between Home Health (curative & rehabilitative) and Home Care (stable & predictive), and that Medicare would pay for Home Health but not Home Care. He also looked at Grandma's Long Term Care insurance (LTC) policy and explained everything about it and how to deal with them. One of the most important things he stressed was that we want a caregiving agency that has people local to Grandma working for them. His didn't, so he recommended two others he thought highly of who did. He came and talked to us for over an hour and gave us incredibly useful information at no cost. It was overwhelming yet awesome. 

One of the most overwhelming parts: the LTC insurance doesn't kick in until Grandma has personally paid for 60 days of care. If she has care for 12 hours a day (which may or may not be sufficient), it will come to roughly $15,000 for two months, then the LTC will pay for $136 per day, still not enough to cover everything with the minimal amount of care. Talk about overwhelming. When I heard this, I thought it was the thing to do, but as I write it down and take into consideration the care Grandma needs, I'm beginning to think an adult foster home may be the best option. This is the constant conversation in my head: what is the best situation for Grandma? I am going to present her with the living and financial options and hope she chooses the foster care. At least that's what I think at the moment; it's sure to change.

On another note, I sent you and Rice a package today. I hope you like it!

Love,

Gin

July 13, 2013

Dear Tatum,

On the first full day of Grandma being home she went through five pairs of pants. She only went to the bathroom once without needing them to be changed and cleaned. I ran a load of laundry the first time, but smartened up and put the rest in the washer to soak until the end of the day. Incontinence is one thing, and diarrhea another, but when you put them together… it's worse. My anxiety about bringing her home was not without reason, but we made it through the day.

I worked in Grandma's garden in the morning, within shouting distance. The rest of the day was spent inside cooking, cleaning, and waiting for bowel movements. I used to think there was a pattern to them, like within an hour of eating, or something like that. But no, there is no pattern. Without going into too many details, the level of clean up makes me agree with the French Prairie that Grandma really does need constant care. It is just too much for her to handle. We talked about it and, thankfully, Grandma can see the sense in that. But she will forget she thought this way when she is feeling better. She goes back and forth between understanding her needs and thinking she's just fine on her own. She's struggling with losing her independence. 

We went to a gastroenterologist yesterday and made an appointment for a colonoscopy. Dr. Epstein would like to determine what the problem is to see if there is a solution. Even fixing one or the other--diarreah or incontinence--would be a big help. 

I've started organizing Grandma's bills so I can set up automatic and/or electronic bill pay. I now have power of attorney and my name has been added to her checking account. I've set up direct deposit for one set of checks but still need to do it for social security. There is a lot to do.

I talked to Rice and he says you've been to the lake a lot but will only sit in the water to cool off. I think you would like swimming if you gave it a try. I hope you're having fun at the lake!

Love,

Gin

Dr. Epstein

July 12, 2013

Dear Tatum,

Given that I arrived on the 4th of July and people were trying to enjoy their holiday, I was patient about breaking Grandma free from the French Prairie, but after the weekend I started working on formulating her escape. It was hard to know how to go about this; they would only give vague answers to my question of how long she would be there. I pushed a little harder after the weekend and the physical therapist scheduled a home visit so they could assess the safety of her home. Grandma came along and the PT made her go through the motions of how she moves around the house. In the end, I had to remove her shower door and replace it with a curtain, buy six wall grab bars, 2 toilet seat grab bars, a hand held shower, and a shower bench. I had to go to five stores to get everything. It took me two days to acquire and install them (mostly because I had to figure out how to install the grab bars where there were no studs. How have I managed so long without knowing this??). Grandma came home a week and a day after I arrived. 

I will admit: the more time I spent with Grandma at the French Prairie the more I could see how intense her needs were and the more nervous I got about bringing her home. But I also knew, despite the care she was getting, it was not a healthy place to be and she was definitely not happy or thriving there. 

In addition, Martha's outbursts were increasing and it was clear that her mental acuity was not intact. On the last day at the Prairie Martha was yelling, "Hello? Hello? Hello? Can anybody hear me? I know they're in the kitchen but I don't know why they won't answer me. If you don't answer me in the next 20 minutes I'm calling the police!" She had the phone in her hand. She was also swearing at the nurses and doctor's and wanting her own escape, but it was clear she was not in any shape to be on her own. 

We were glad to leave.

Love,

Gin

A sign (and garbage) left by a homeless man at the intersection of I-5 and 214. 

July 11, 2013

Dear Tatum,

Slip and Arrow told me a funny story about Arrow's friend, Label. Label was in love with his college lab partner for years after school ended. They stayed in touch and he visited her a few times in Europe. Eventually, they went on what could have been a romantic trip to Italy, only when they kissed, the sparks didn't fly. At least that's what she said. He was crushed and decided to start recovery by creating an online dating profile. Such things are common these days, but he took the endeavor pretty seriously. He had a professional photographer friend take his profile picture. The photographer friend accidentally told Slip and Arrow about the photo shoot and they had to wait awkwardly until Label mentioned it to them. He asked Arrow to help him choose the best picture. I wouldn't be surprised if he hired a professional writer to write his description, but I'm making that part up. I really, really, really want to see Label's profile. Slip and Arrow joked that maybe I should date him and we laughed. I don't want to date him, but I do want to see his finely crafted profile!

Love,

Gin

July 10, 2013

Dear Tatum,

For the first week or so at the French Prairie Grandma had the room to herself, but a few days after I arrived, a roommate, Martha, moved in. As she was getting settled on the first night, a nurse pointed to Grandma and said, "That's your roommate." Martha said, "That's not my roommate!" These same two lines were repeated with subtle variations a number of times before Martha said angrily, "I have a domestic partner and that's not her!" Then we all understood. 

It was hard to tell what Martha was in for. She obviously had difficulty making clear sense of some things, but she could also be very polite and coherent. On the second day, she couldn't get the phone to work to call home, so I let her use mine. Once she'd gotten through, it was obvious she was upset with the person on the other end for not coming to see her. Who could blame her? It's a horrible place to be left alone, not knowing when you can go home. It's like a form of jail, but you're not there because you've done anything wrong, your body or your mind has turned against you and now you're paying the price. You have lost all control and are at the mercy of your jailers, in this case doctors and nurses who are ostensibly there to help, but also come with their own agendas. 

As more time with Martha passed, it became evident that, like so many things, it was complicated. After some odd exchanges with her, I asked a nurse about Martha's condition. She hemmed and hawed and mentioned confidentiality, then gave me a brief explanation that included the word "detox." I got more information through the thin curtain, including that Martha's partner had recently received a DUI and had lost her license. 

Martha did not take well to the new environment and didn't understand that if you needed something, you pressed the red button. Instead, she would ask me for help or repeatedly yell the word "ma'am." It went like this: "ma'am… ma'am… ma'am… ma'am… ma'am… ma'am… MA'AM… MA'AM… MA'AM… MA'AM…" and so on. Grandma reports that she does this throughout the night. Grandma hears very little, so if she's waking up to this, you know it has to be loud and annoying. All the more reason to break Grandma free!

Love,

Gin