Archive for June, 2009|Monthly archive page

A drive and some ice cream

I tried something new with Mom on Sunday. Instead of showing up for just a brief visit before lunch, I went to see her shortly after lunch. This was partly because I figured she might have gone to church again, as she did the week before, which leaves no time for visiting before lunch. But after driving her through the park recently and finding it both pleasant for me and apparently just fine for her, I decided to take her out for a drive and to get some ice cream. She virtually never turns down a chance to eat ice cream. She has seemed to show some interest in going on outings lately, and I admit I’m a little tired of lunch at Bob Evans. Not the food, exactly, but the nature of that kind of outing and the stress I think it might put on both Mom and me if there is little conversation. There we are, facing each other at a table, with nothing to say to each other. It has just gotten a little old, at least for me.

So I went to collect her from the lobby, where she was sitting with her friends. I think her friends are noticing that I’m visiting more often. “Oh, you’re taking her away again,” Alice said. Just for a little while, I said. For a drive. As we left, I wasn’t really even sure where to go. I decided on parts of the Ohio State campus, the football stadium in particular. Mom, of course, doesn’t care where we go. She sits with her dog in her lap or tucked near her purse by her legs and picks at her chin. By the Schottenstein Center, I said, “That’s where Ohio State teams play basketball.” “I used to do that,” she said. “I remember that.” Mom was a men’s basketball fan in the late 1950s, when she attended OSU. I said, “Jerry Lucas and John Havlicek. They were playing then, weren’t they?” And she said, “Well, I don’t know about that.” I said I must have it wrong. She did used to talk about the famous OSU athletes of her day. But she hasn’t had a clear memory of college for a good two years now, I’d say. And before she lost the concept completely, she thought I had been in school when she was in school. She never seemed to believe me when I said I wasn’t born yet when she was in college.

As I turned onto Lane Avenue, I remembered I would not be able to get to the stadium from that direction because of construction. So I pointed out St. John Arena, and told Mom that was where she would have watched basketball. She didn’t seem to remember that. We drove along High Street, and I drove through Olentangy Village, an apartment complex Mom had always liked. She had no memory of it, or the many summers she spent there lounging at the swimming pool. But we could see the river, and we admired the trees.

I parked there and we went to Denise’s ice cream on High Street. Mom had a hot fudge sundae and I had a scoop of sweet cream ice cream. My stomach had been bothering me just a little bit so I didn’t want to overdo it. But Mom’s sundae looked delish. She ate it with some enthusiasm, so I was glad to see her appetite is normal. Her dog sat next to her on the table. I told her I was going to take her picture. To prepare for the photo, she blotted her mouth with her napkin – something I rarely see her do – but rather than posing, she just continued to eat. And I snapped one shot.

Mom finishes her sundae at an ice cream shop on High Street.

Mom finishes her sundae at an ice cream shop on High Street.

She said a few things of note during our outing. When we were heading to the car, I said, “We’ll just drive around and see some sights.” And she said, “We don’t have fights.” I assume she was talking about her friends. That made me laugh.

She asked me several times if I had any news.

After I told her my stomach was a little iffy and then I later coughed, she said, “You should go home and rest.” Which I later did.

As we were driving around, she asked, “Are you happy with your life?” I said yes. “Are you?” I asked her. And she said yes, too.

When we drove by the Clintonville apartment she lived in from about 1991 to 1999 or so, I said, “You lived there for several years.” “I DID???” she said, incredulously. It was an interesting response, I thought.

After I had returned her to her lobby spot and we were saying goodbye, she said, “I hope your husband is kind to you.” She likes Patrick so I believe she thinks he is kind to me. My take on this was that she was remembering that I wasn’t feeling tiptop and she was looking after me. I’ll take any of that that I can get.

The best thing she said, though, was as we were walking from the car toward her facility. Recalling the outing we had just completed, she said, “That was nice.” That’s exactly how I’d hoped she feel about it. Even if she doesn’t remember it now, she was content in that moment.

An extra year

A correction is in order. Somehow, I have lost a year of this experience of taking care of Mom. I have said to anyone I talked to that she was diagnosed with Alzheimer’s in November 2006. Well, I am now going through older documents to find things I need to produce for the Medicaid application and I found the prescription pad notes from the neurologist on the day she was diagnosed – Nov. 3, 2005. Meaning she was showing signs of the disease for a good year before that. Meaning she lived in her apartment for almost two whole years before we moved her to assisted living. Those two years were often hard for me because Mom was still driving, not eating much, buying groceries she didn’t need, never cleaning her apartment. And she was somewhat fussy, with good reason, since she was probably afraid and confused and worried and then forgot all that until those feelings started all over again. Meaning I have been generally looking after Mom, first at her apartment, and then in assisted living, for about five years. I cannot believe it has been that long. Though I suppose I feel every minute of it, especially today.

I quit taking the Lunesta. I didn’t have some of the common side effects, like the bad taste in my mouth. But I did have day-long fatigue every day after I took it, even with a solid night of sleep. And headaches. It was sort of as if something was wrapped around my head, sometimes squeezing and sometimes covering my eyes and making them feel sleepy. So the last two nights I have not slept particularly well. I was able to drop off Wednesday night pretty well with the help of a backrub from Patrick. But I woke up very early and just kept my eyes closed, hoping I would fall back to sleep. And then Thursday night, I had trouble falling asleep. I tried to drift off on the couch but couldn’t, and thought the bed would be more comfortable. Got squirmy in the bed so I tried the couch again. Frustrating. The power was out at my office today so I came home and decided to try lying down with the dogs. I think I slept a total of about an hour and a half. I always say when I CAN sleep like that, I should sleep. So I feel better, but have a little of that post-nap fog.

And now I am taking advantage of some open weekday time to look for documents and head to the bank to take care of a few statements there that I need for the blasted Medicaid application. I have begun the process of surrending Mom’s last big IRA fund with a company that makes it particularly hard. One reason, I discovered just this week, is that the account has been frozen because the address was never corrected by Mom herself since she moved from her apartment to assisted living. Every other bank and agency somehow got it figured out, but not this company. I have to send a notarized POA form, plus a copy of my POA form, plus a doctor’s certification that Mom is incapacitated. Hoping the doc can get that done early next week… thankfully a social worker in his office works as a liaison for these kinds of needs.

I am not using this time today to visit Mom. I stopped to see her on the way to work today. She was wearing about half the outfit I had set out for her on Tuesday. She had a different shirt on, and the shirt had a large brown stain right on the front, in the middle of her belly. I hoped that was possibly chocolate ice cream or something. I didn’t investigate. I asked her if she’d like to take a shower, but she declined. But I told her I wanted her to change all of her clothes. I washed her face and underarms. Put her in blue pants, a pink sparkly T-shirt and a pale blue jacket. Blue socks, pink Crocs. She was generally fine, but she was complaining a little bit about her friends. About them taking over. About something changing. I didn’t try to interpret. “Let’s go somewhere sometime,” she said. I told her this weekend we’d go for a drive and to get some ice cream. I sat in the lobby with Mom, Ginny and Alice for a little while. Ginny called me “Sug,” short for “Sugar.” She calls Mom “Bon” sometimes. It’s cute. Alice was very quiet. And finally I decided to get to work. And that’s when I found that the power was out. And consequently discovered the extra year I have been doing this.

Following friends

Mom has done two things recently that, as far as I know, she has never done before. She did these things with her two pals at the assisted living facility – Ginny and Alice. I don’t think it jeopardizes their privacy to mention their names, and it makes things so much easier. Alice and Mom occasionally scrap and end up sad, then I think they both forget what happened and go on as if nothing ever happened. Ginny always seems cheerful and friendly, and if she ever gets into an argument, I never hear about it. Mom has been hanging around with them for months and months. The three of them sit in the lobby most days and chat. Other residents know who they are and where they are most of the time. Since Roxy died, Mom’s attachment to them seems just a little bit more pronounced.

Last Friday, when I went to see Mom before lunch, she was in exercise class. I went up to wait for the class to end and the activities director saw me in the hall. “You’ll never recognize your mom,” she said. It turns out Mom had followed Ginny and Alice to the hair stylist’s little on-site salon, which is open on Thursdays and Fridays. Mom had her hair done. I don’t think it was cut, but it had been washed and curled. And she had on dark pink lipstick. I loved it. The receptionist had once asked me if it was OK with me if she encouraged Mom to get her hair done at some point. I told her to please go ahead. Mom rejected the idea at that time. I had thought I might make an appointment there and accompany Mom to make her more comfortable. Turns out she just needed her friends to get her through it.

Then, on Sunday, I went to visit, again before lunch. A woman who always sits near the mailboxes, who has started reporting Mom’s whereabouts to me when I show up and can’t find her, told me Mom went to church. “Church,” I said, and laughed. As far as I am aware, Mom never practiced any kind of religious activity. She may have attended church as a young person, but she didn’t take us kids to church, or encourage us to go to church, or ever talk to us about anything remotely religious. She did regularly instruct me, though, on right and wrong. That’s how I remember things, anyhow. I was actually free to cuss while growing up, and those who know me know that I enjoy a good swear word on a regular basis. But she corrected me when I said mean things to or about someone. Despite her somewhat self-destructive behavior, I believe she instilled in me principles that shaped my current thinking. But anyhow, none of that revolved around God. I explored religions on my own as a kid, and Mom didn’t stop me or really pay any particular attention to what I was doing. Now that I think of it, Mom began attending church on occasion with a friend perhaps 15 or so years ago. I forgot about that. A Presbyterian church, I think. At any rate, for a long time, she has not talked of church. But Ginny and Alice attended the nondenominational church service on Sunday morning, so Mom did, too.

The chapel is in the nursing home side of the facility. I went over to look in the windows. I could see Mom sitting in the back. I sat on a couch in a little lobby area and waited for awhile. I thought I’d walk with her back to the dining room and at least visit briefly before she ate lunch. While sitting there, I welled up just a little at the thought that Mom is so attached to these two women at this particular time. Pretty soon, she will be taken out of that familiar environment with familiar people. I have no doubt she will be able to establish new habits and get used to new people. But I am sad about the potential that she will be sad about the change, at least for awhile. The clock neared noon, and at that point, I left. I didn’t want to rush a visit with Mom. That confuses her sometimes. I went to her apartment and tidied up a little, cleaned out the dead flowers from her birthday and sprayed various air fresheners in my ongoing attempt to make the place smell urine-free.

I visited her Monday after the Medicaid appointment to make up for missing her on Sunday. She was lying on her bed when I arrived. “It’s a miracle,” she said when I walked in the door. Routine greeting now – that or “Hallelujah.” More religious references… And the housekeeper came in with her laundry, and we talked a little about how little laundry Mom has now compared to the past, when she used to scatter clothes, socks and disposable underwear all over her room. She now just wears everything until someone comes along to change it for her. Mom continued to lie on the bed. I assumed she had been napping. “I’m lazy,” she said. I just laughed. She had on a Christmas fleece sweater over the shirt I put on her on Friday. And new pants – gray fleece – instead of the white pants I had dressed her in. She said she might have to poop, and I absently told her that was fine while I went through her closet, trying to pick out an outfit the staff could put on her after her shower the next day. “How do I do it?” she said. Whoa. This was new. “How do you poop?” I said. And she said yes. “You pull all of your pants down and sit on the toilet,” I said. “Oh, OK,” she said. She said, “You might get poop on your clothes.” I asked her if that had happened to her – and wondered if that’s why she had on a different pair of pants. “Well, if it gets on anything you can just wipe it off,” she said. I just nodded and tried to not look alarmed at what she was saying. The loss of independent toileting, as the books and brochures call it, is pretty much inevitable. And is even more evidence that she is pretty much ready for the nursing home.

The dog on Mom's bed, and pink Crocs with no socks.

The dog on Mom's bed, and pink Crocs with no socks.

Speaking of friends, Mom’s best friend continues to be the stuffed dog. I don’t think he’ll ever have a name. Sometimes he’s called a cat. But he goes wherever Mom goes. Sometimes he’s in her purse. I’m so glad she has him and has become attached to him. He will never let her down.

Going on government assistance

I applied for Medicaid on Mom’s behalf today. The appointment took three hours. I like the caseworker, and she and I are stuck with each other for the duration, so that’s a good thing. I think she liked me OK, too. These case workers have to be skeptical, have to look everywhere for hidden money, must become highly cynical over time. But at the end of the appointment, she told me I had done a good job about bringing in the required documentation. That meant a lot, since I still have about six other things to produce for her. And I had fretted about gathering everything and selecting the proper paperwork. We even found a little money during the application that I have to track down – something associated with Mom’s retirement, perhaps another Roth IRA for which I have never seen a statement. “Sometimes, they don’t send you a statement if you don’t ask for it,” my case worker said. I guess so.

So I had collected Mom’s birth certificate, driver’s license, insurance cards, bank statements, income statements from retirement and Social Security, assisted living bills, check stubs from closed annuities, statements for annuities that still exist. The assisted living facility gave me a list. The Medicaid staffer who called me last week gave me a list. I looked online and found a list. So I had the information, and thankfully I was able to find everything that is absolutely required. And yet based on her telling me I did a good job, these case workers must experience all kinds of less complete first attempts at the Medicaid application. Now the case worker would like some evidence of our sale of Mom’s car in either late 2007 or early 2008; I can’t remember. And three bank statements from 2007, after Mom moved into assisted living. And this mystery Roth IRA info. I have to contact the Veterans Administration because apparently, since Dad was in the Air Force while Mom and Dad were married in the 1960s and it was during an actual war, Mom is eligible for a higher monthly allowance than the $40 Medicaid allows. And there is something else I have to produce that I can’t remember. She wrote out a tidy list of things for me to do. And I learned along the way, from her occasional asides, that she has been in this exact same spot. Her mother had dementia. She was in a nursing home. She died in 2007.

I had assumed that once Mom moves into the nursing home, and Medicaid covers her care and medication costs, that the money associated with her care would take care of itself. Not so. I will have to carefully maintain Mom’s checking account. I will still be billed monthly by the nursing home and will have to send a check every month. The amount I send will be Mom’s income minus her $40 allowance (or maybe higher allowance based on what the VA says). The amount will be set by the government, and will be adjusted each time her income changes – either the calendar year or her retirement anniversary. And every time I buy her something, such as personal care items or underwear, I will have to save the receipt to prove I used her money to buy something FOR HER. I have to keep all of these records from when she becomes eligible until five years after her death. In case I am audited. What a joyous thought, to be audited after draining Mom’s accounts dry, placing her on Medicaid and in a nursing home, keeping track of every penny of her measly $40 each month that I spend, and then having her die.

So now, the clock is ticking. I have 45 days to take care of these various things – find paperwork, surrender two annuities, get the details on a third possible retirement account, and then, once all that is straight, we (I’m thinking my siblings and I) have to spend all of her money down so she has no more than $1,500 so she can be eligible. And forever more, she cannot ever have more than $1,500. That is the Medicaid rule. I understand it, but I didn’t know I’d have to hit that level so quickly. The good news is there is still a credit card we can pay off. And we can prepay for at least part of her funeral expenses. My sister has said she will pay for this, but I think we could apply some of Mom’s own money toward it and we probably should. That will be no fun, to make decisions, pick a casket if we go that route, or opt for cremation, think about what kind of service we will want, decide whether to bury her or her ashes. My siblings and I have not talked about this, so that conversation has to take place. I don’t think Mom ever really expressed her wishes. But maybe when I go digging through her things again, I’ll come across her thoughts about all this.

Woof

I decided to take Mom to lunch Tuesday. I didn’t tell her in advance, of course. These days, when I try to call her, I never catch her in her apartment. And she doesn’t call me anymore. I’d say it’s been a good six weeks since she has left a message on my work voice mail or called me during the day. I guess that ability is gone now.

When I went to pick her up, I could see through the facility glass doors that she was walking toward the door as I was walking up the sidewalk. She has started doing this more frequently – meeting me at the door. I can’t recall the last time she used my name, but she obviously knows my face. So I guess when she sees me, she just starts moving toward me. I noticed she had on a new outfit rather than the one I had dressed her in on Sunday. I was pleased about this – that meant the staffer who showered her also changed her clothes for her. She was also holding onto the stuffed dog Patrick and I gave her for her birthday. She said, “I’m going to bring him,” and I said, “Yes, of course, you should.” I was just tickled that she had that dog with her. This was exactly what I was hoping for, that she would see it as a companion.

We headed to Bob Evans. I ordered her the usual pot roast hash and I had a big spinach salad. When the meals arrived, she kind of looked at hers and she said, “What do I do with these?” – meaning the eggs placed on top of the meat and potatoes. I told her she could dig in anywhere. She ate around the eggs and finally broke one of the yolks. When that happened, she sort of muttered, “Oh, OK.” Like seeing the yolks break was familiar. The nurse told me last week that Mom didn’t seem to be eating very well. I was hoping that was just stress over the cat’s death. But perhaps she is losing some recall on how to eat, too. Once she got started, she seemed fine. She definitely knew how to use a straw to drink her Coke.

She placed the dog on the table right in front of her. Every now and then, she’d put her nose up close to his and say, “Woof.” I just thought this was terrific. I asked her if she was going to name him. This was a dumb question. She doesn’t remember any names. She said she hadn’t named him but that maybe she would. She also said, once, that the cat had come back. “Oh,” I said. “Wow.” I thought I would just let that go. I had no idea what made her think that was the case. She asked me how things are with me. I told her everything is fine. She didn’t ask with any nervousness, though, as if she were afraid I might be going away. More just making conversation. When we had left the facility, I asked her how she was doing. She said she was doing fine. “But some problem will come along soon enough,” she said. That cracked me up, which made her laugh. That is the Bonnie way of thinking: things are OK now, but this won’t last. It could be said that that is an Emily way of thinking, too. Wonder where I got that from?

We finished lunch fairly quickly, and had gotten there early, so I felt I should kill some time before I took her back to her place. “I won’t be able to eat much,” she said, which made me think she thought she was going to go back and go to lunch. I wanted to avoid any confusion like that. So I suggested we just take a little drive, which she thought sounded fine. On the way out of the restaurant, she showed two employees her dog. Both of them, the good sports that they were, told her how cute it was. Rather than be embarrassed about my senior citizen mom carrying around a stuffed animal, I was just gaga with pride. I didn’t notice any unusual stares, but I wouldn’t have cared if I did. My mom was happy, and that made me happy. In fact, I have said a few times since then that her spirits were about as good as they have been in a long time.

I drove through Clintonville to Whetstone Park, where we had been just a few weeks ago for Mom’s birthday. We admired the nice houses along the way, the people walking dogs, the trees. I drove through the library and recreation center parking lot so Mom could see kids playing on the swing set. I told Mom I used to be in plays at the rec center many years ago. And that I played T-ball as a little girl at the ballfields we drove by. And as we drove down the hill, I told her that the park hasn’t changed much over the years. And I told her there were lots of roses nearby, but I didn’t think we had enough time to look at them that day. I reminded her we had just been at the picnic area for her birthday a few weeks ago. I drove slowly, and sometimes we didn’t say anything. Mom sat quietly most of the time, and picked at her chin, a behavior she has had for a year or so. It was sort of meditative for me, and relaxing. I didn’t feel rushed, I didn’t feel frustrated, and I wasn’t worried about how Mom was feeling.

We got back to the facility just as Mom’s friends were coming out of lunch. Mom sat down on a couch in the lobby and placed her stuffed dog in the space next to her. I went to check her apartment. It was very clean – the carpet had been cleaned. It smelled pretty good. It was brighter. The housekeeper had tried to wash Mom’s curtains the day before because they were covered with cat hair. I don’t know what material they were, but the administrator e-mailed me to say the curtains didn’t come out of the washer in the same condition they went in. I assume they fell apart. I told him I didn’t care, not to worry, I commended the housekeeper for trying. I think I have an extra set. But really, the brightness of the apartment makes me think Mom doesn’t need new curtains for her last five weeks in the apartment. It is more cheerful and the sheers are still there for privacy. Her windows face the back of the property so she doesn’t have much foot traffic at all near her windows. And I’m sure she won’t miss the curtains.

Sleep meds

I went to see my doctor today. After the middle-of-the-night almost-panic attack plus general problems of all kinds with sleep – trouble falling asleep, trouble staying asleep, waking up too early – I thought I’d talk to her about anxiety. I also think stress is affecting some other various body parts and I’m tired of that, too. I thought I might benefit from an anti-anxiety medicine, such as Xanax, the only one I’m really familiar with because Mom took it off and on for years. I was feeling anxious before I went in to my appointment. I guess admitting anxiety is getting the best of me is an uncomfortable thing, even though I have always been pretty open about my mental health history.

The doc focused on sleep instead. She said if I am helped by a sleep medication, my anxiety might be reduced as a result. I didn’t really expect this outcome, but I’m willing to give it a try. She prescribed 2 mg of Lunesta daily, about a half-hour before I go to bed. Of course, I have been looking at Web sites to see what the low-down is on side effects. Message boards are full of people complaining about a bad taste in their mouths. But the clinical trial results show fairly low percentages of so-called “adverse events,” and chances are better that I’ll be side-effect free than that I’ll be riddled with headaches, indigestion, sleep-walking, drowsiness and a bad taste in my mouth, some of the most common minor problems with this drug.

Meanwhile, Mom seems to be doing pretty well. I stopped in Thursday last week, two days after the cat had died. Mom was at an exercise class. I didn’t want to distract her from that. I had a lunch date with my co-workers, so I didn’t stick around too long. I did talk to the nurse, who said Mom had been pacing around the first floor a lot, and talked about her dead cat with her friends. But her mood was OK and she was still engaging with her usual friends, hanging out in the lobby. On Friday, I tried again before lunch. Mom was in the exercise class again, on the second floor. While she was in there, I used some pet-odor remover on her couch and an ottoman in her apartment, and sprayed the whole place with various air freshening products. Then I went upstairs and watched her exercise for a little while. The group, instructed by the activities director, ended with a final stretch of the O-H-I-O cheer and a “Go Bucks.” Pretty cute.

Mom was glad to see me when she came out of class. We went to her apartment and I coaxed her out of one outfit and into another. I don’t know if changing her clothes makes her feel better, but it makes me feel better. I combed her hair and saw her off to lunch in the dining room. I returned Sunday for a similar visit before lunch. I found Mom walking the halls and when she saw me, she said, “Oh, hallelujah. I’m so glad to see you.” She had on a bulky fleece jacket over a purple fleece sweatshirt and gray pants I had dressed her in two days before. I took her back to her apartment and once again disrobed her. She’ll do anything I suggest, pretty much, so this isn’t a big deal. I washed her face and her underarms and put deodorant on for her. This time, I dressed her in black pants and a black sweater with a pretty pink T-shirt underneath. I also suggested she brush her teeth, which she did. And I combed her hair. I kept telling her I was freshening her up. A staff member stopped to tell me Mom was doing well, and that other residents are looking after her. I am so glad they are doing that rather than rejecting her as she gets more and more confused.

She seemed a little confused on Sunday, actually. She said lots of things were changing, and that a bunch of people had been taken away. I assume the facility took residents on a shopping trip or something like that. And I told her it was the weekend, so the staff was smaller and the schedule was not the same. I told her things would feel normal again on Monday. “Oh, OK,” she said. “That would be good.” She doesn’t like change. But she also said, “Would you move me somewhere else if I wanted you to?” Eek. I told her I want her to be happy and that I thought she usually was happy in her current location. I don’t know what this might mean about her readiness for the nursing home: will she welcome a smaller space, a roommate and more staff around, or will it represent more change than she can handle? Either way, it’s just about five weeks away. When we had finished freshening her, I sent her off to the dining room again, and told her we’d go out to lunch this week. Nothing brightens her more than that these days.

The care and feeding of a caregiver

I imagine that what is true for me is probably true for many caregivers. We might feel like we suffer alone, but we don’t. We impose our suffering on others around us at times. Perhaps not intentionally, not with malice, but just by being sad, or tired, or frustrated, or angry, or sleepless, or anxious, or busy, we affect the lives and moods of those closest to us. Many of us are lucky to have a spouse/partner to lean on. I consider myself very lucky in that respect.

I once said to my husband in the context of caregiving, “You don’t know what it’s like.” Probably not a very nice thing to say, because he knows as well as anyone pretty much what I am experiencing from day to day. But what I meant was, he is not feeling the loss of a parent in the way that I am feeling the loss of my mother. All while doing what I can to cater to her varying needs and adjusting to her changing personality and behavior. He is losing her, too, but it’s different for him. He is definitely able to keep a certain distance. What he has to adjust to, instead, is a wife who might laugh at a joke on one day and call it heartless and mean on another. And who complains about a variety of pesky minor health issues that she always attributes to stress. And who slinks off grumpily each weekend to make the obligatory weekend visit to see Mom. And who shows up from time to time from wherever she’s been with puffy eyes because of an impromptu cry. And who can just be plain irritable, fussy, cranky, whatever, at any given time. And who often, more and more these days, has a complicated time with sleep.

Patrick does a fine job with all of this. He uses humor more than anything else to distract me from my tension. It often works quite well. He is also affectionate, and kind, and can become emotional when he witnesses any of my various kinds of suffering. He has a definite soft spot for me, no doubt about it. So sometimes, when I’ve been shlumping around feeling sorry for myself, he’ll take extra long to run an errand and come home with a new purse for me. Really. He recently bought me a summer purse. And after I admired a pair of embellished sandals on the TV show “What Not to Wear,” he came home one day from Target with a pair of similar sandals for me. It’s not like I won’t buy things I like for myself. And it’s not like he’s trying to buy my happiness. These are acts of kindness, little ways of saying, “I was thinking of you.” New things to take my mind off of whatever I might have been thinking about. Nice things to wear or carry that remind me of him.

This past weekend, I experienced something that resembled the panic attacks I used to have in the mid-1990s. I woke up in the middle of the night, my heart pounding. I was hot and agitated. I got out of bed and started walking around. It was Saturday night. Earlier that day, I had seen Mom’s cat, pretty much immobile, and certainly not normal because his pupils were dilated – like saucers, as they say. It was Mom’s birthday, so I was focused on her. For the day, I set aside the cat’s abnormal appearance. And unfortunately, it was hours later, in the middle of the night, that I panicked about his clear need to see a vet and couldn’t get him out of my mind. I looked at a book I have about pet illnesses. I surfed Web sites about “dilated pupils” and “not eating” in cats. That calmed me down a bit, reading message boards about various things that might cause a cat to have these problems. I convinced myself everything would be OK as long as I called the vet to have him checked first thing Monday. I was up from 2:52 a.m. until about 5:30, when I finally fell back to sleep. Of course, now we know Roxy was dying of heart disease. But in the middle of the night, I thought he was suffering strictly because of my neglect.

Patrick and I didn’t wake up until about 9 a.m. – kind of late for us, even on a weekend, because we go to bed fairly early. Patrick said he noticed I hadn’t been in bed for part of the night. I told him I started worrying about Roxy, the cat. “Well, you’ve probably killed him,” he said. “You killed Cookie, and Stoney, and now Roxy. You’re three for three.” Now, that sounds terrible, but it was funny. Cookie was our beloved black lab who died of lymphoma at age 4 in 2003. Stoney is our cat who also lived with Mom, and who died of cancer in December. Patrick can barely talk about Cookie without crying, so when he jokes about her, it is clearly an effort to cut the tension. We got up and made coffee. I started my Sunday morning routine of collecting our clothes, sorting and doing several loads of laundry. I read a little bit of the paper. I knew Patrick had started cooking, and he was using leftover grilled steak from the night before. I wasn’t paying a whole lot of attention. I was making the bed when he called out, “Hey, Emily. Come on.” I went to the kitchen, and he ushered me outside. He had set up our patio table with two big helpings of steak, potatoes and eggs over croissants and tall glasses of orange and cranberry juice mixed together.

Sunday breakfast on the deck, courtesy of Patrick.

Sunday breakfast on the deck, courtesy of Patrick.

We brought out our coffee cups and the paper and ate an al fresco breakfast on a beautiful late spring morning. Patrick was taking care of me after my bad night. We didn’t need to talk anymore about the bad night. We just enjoyed our breakfast. And my heart was all melty as a result of this devoted attention.

Caregiving is hard a lot of the time. It’s a gift, or at least an opportunity, sometimes. It can feel lonely. But I have often thought I am lucky by the Alzheimer’s caregiving standards. Mom isn’t mean to me. She had enough money to live in assisted living for almost two years, and is running out just in time to need the more intense nursing care that will be covered by Medicaid. I have never felt the burden of providing 24-hour care. I have family and friends to talk to when I want to, who help with Mom, or who offer to help, or to listen. My workplace is very flexible for those times when Mom needs immediate attention. I discovered the benefits of blogging.

But I am luckiest of all because I have Patrick by my side, and on my side.

The cat died, sleeping next to Mom

I finally took the cat to the vet yesterday. When I called on Monday morning to make the appointment and settled on Tuesday, the tech said that, based on my description of his symptoms, she thought he should be seen immediately instead. So I took him in immediately. I told the vet about how he hadn’t been eating much, and that once when I watched him eat dry food, it seemed to hurt his mouth so I had thought he might have a sore tooth. But he hadn’t eaten much canned food, either. And then I had seen him Saturday, with dilated pupils, and had finally been snapped out of my denial/avoidance and decided to have him checked.

Roxy had always been a fat cat. Mom sometimes called him 'Big Boy.'

Roxy had always been a fat cat. Mom sometimes called him 'Big Boy.'

The vet examined him thoroughly. No infected teeth. No fever. Complaints when his abdomen was probed. Severe weight loss – four pounds in four months. She took blood. A glucose check showed that he did not have diabetes. Gave him subcutaneous fluids. He peed on the exam table, and she sucked up a urine sample off the table using a syringe. And we decided to also go ahead and get X-rays. The films didn’t look good. Roxy, the cat, had an enlarged heart and fluid in his lungs. I heard the vet say several times that the X-rays should be stopped if he showed any signs of stress. His heart had what vets call a “galloping” rate – really rapid. Before even waiting for the blood test results, I had decided we would probably have to put him to sleep, and soon.

One interesting thing I noticed – after he peed and the vet collected a sample, the techs sopped up the pee on the exam table with a towel and left it there while they took the cat downstairs to take his X-rays. I waited in the exam room. After awhile, the pee towel began to stink. And it smelled like…Mom’s apartment on a smelly day. Those times when I thought I might be smelling Mom’s pee, I apparently had been smelling Roxy’s pee. Or a combination of the two. One thing I had told the tech when I was making the appointment was that Roxy hadn’t been using the litter box much. I neglected to say he had likely been peeing on Mom’s couch and, I think, her bedspread.

I had decided I would bring Roxy back to my house if he needed regular meds. But the vet just gave him a diuretic and a pill to help relax his heart. There was really nothing else to give him. She still made references to having him come home with me. But if he was to avoid stress, Mom’s apartment was the place to be. That has been his home for more than two years. No dogs live there. His smells, and food, and litter, and toys are there. And Mom was his human. So I took him back there and told Mom he had a bad heart. She asked if he could take medicine. I told her we wouldn’t know for sure until today, the next day, when the blood work was due back. She said, “I think he’s going to be OK.” She hadn’t even really realized he was sick. When I put the carrier on the floor of her apartment, he declined to come out of it. I lifted him out and showed him a new bowl of fresh canned food. He did eat a little bit. When I left Mom’s, I told the nurse that the cat would probably be put down soon and perhaps we would need a new med if Mom became upset.

Our alarms had just gone off this morning when I heard the phone ringing. I didn’t get to it before the answering machine kicked in, and I heard the day nurse’s voice say, “This is Cheryl.” I picked up the phone. “The cat’s dead,” she said. Roxy had died on Mom’s bed, and in my mind, I like to think he just fell asleep next to his girl and never woke up. I quickly got dressed, fixed a cup of coffee, sent an e-mail to my coworkers that I was taking the day off, and sped over to Mom’s. When I got there, Mom was asleep on the bed, her back turned to Roxy, who was covered with a towel. She woke up and seemed just slightly confused. I started wrapping Roxy’s body in a towel I had brought, and I started to cry. I think this had an impact on Mom. I told her I was sorry he had died, that I was worried about her, but that I was also sad for myself, that I will miss him. She asked me what I was going to do with him and I told her I was going to take him to the vet. “But he’s dead, right?” she said. I told her the vet would arrange to have him cremated.

Mom got up, and we talked a little bit about the cat and she said she was going to be sad for a long time. She also asked if she could get another cat. I said, “Let’s just think about that for awhile and not make any decision right away.” I guess she thought that sounded reasonable. When the other cat died in December, Mom was weepy, inconsolable, telling everyone she came into contact with that her cat was dead. This time, she just talked about being sad. She didn’t act too sad. I am guessing it’s all about the general withdrawal she is going through, and how that seems to suppress her emotions. She’s never particularly up, and even with this loss, she isn’t particularly down. It’s a relief for me. I cried a few times today, I think in part to relieve the tension I had built up just anticipating how Mom might react to the loss of the cat.

I decided to shower Mom. It was shower day anyhow, and we had some time to kill before breakfast. I am not skilled at this, and I sprayed water over half the bathroom, soaked my shoes and one pant leg. I also discovered Mom had no shampoo, but three bottles of conditioner. Multiple product purchases left over from early in her illness, I suspect, when she bought things she didn’t need. I resorted to washing her hair with bar soap, and then scrubbed the rest of her and dressed her in a clean outfit. While she was at breakfast, I called the vet’s office to let them know I’d be bringing the body by to be sent to the funeral home. The tech asked if Mom would want the ashes. “She doesn’t need them,” I said. “But I think I do,” I said, and started crying. After hanging up, I cried some more. Then I made three trips to the dumpster, throwing away litter boxes and blankets that had been by the window that were completely covered by Roxy’s fur. I cleaned up the food bowls and put the remaining cat food in the closet. I wanted to remove all signs of the cat with hopes that the lack of reminders might keep Mom from focusing on what’s missing. I don’t think she’ll forget Roxy, at least not immediately. But I don’t want her to obsess about him.

After breakfast, we sat in the lobby for awhile. Mom looked at me and said, “You look like you’ve been crying.” And for that split second, it was as if my mother were talking to me with concern. As if for that moment, I had a mother looking after me. Later, reflecting on that and the fact I could have used a mom today, I cried once again. I took Mom to lunch. We didn’t talk too much about the cat. Mom asked me how I like my job. She said, “I want to be sure to get your address. I want to write to you sometimes.” It’s like we are entering a new chapter in her life, and the loss of the cat will somehow change things. “You’ll still visit me, won’t you?” she asked. I assured her I would. And now I won’t have cat duties to tend to. I can focus completely on Mom. “I’m afraid to go there alone,” she said. I told her she is very safe where she lives. But that made me sad. Mom has had the consistent companionship of a cat for at least 10 years, I’d estimate. We gave her our two cats when her beloved Petunia died suddenly in March 2007. It was a win-win – companionship for Mom, and dog-free living for the cats in a home in which they would be showered with attention and plenty of food. Patrick and I got Stoney, who died in December 2008, from a friend shortly before we were married in 1995. Her littermate was hit by a car about a year later. We got Roxy from a shelter to keep Stoney company. Both were somewhere between 13 and 14 when they died, Stoney of cancer and Roxy of heart disease. Patrick learned much later that he was allergic to cats – another plus in letting our cats live with Mom. But it is now the end of the cat era in Mom’s life. And mine.

Birthday Girl

Mom turned 72 today. Unlike Mother’s Day, a conceptual idea that is hard to explain to Mom, she understands the birthday. Sort of. So I wanted to do something to make her feel special.

Pretty cupcakes for our small party for Mom.

Pretty cupcakes for our small party for Mom.

Last year, we took her to dinner and Patrick met us there with balloons and gifts. This year, we settled on lunch. Mom takes meds at dinner that make her sleepy, so I never take her out late in the day anymore. I wanted to work out in the morning, but I also wanted to get Mom a couple of gifts. Patrick volunteered to take care of that task. And I was grateful both for the time it saved me and because he is so excellent at gift selection. He’s a thoughtful fellow. I wanted to get her at least one balloon and a teddy bear, as well as some chocolate candy. I was looking at Web sites yesterday for gift ideas for Alzheimer’s patients and saw references to stuffed animals and even baby dolls. I have read before that patients can enjoy stuffed animals. I am saving the baby doll for Mom’s move to the nursing home, when the cat moves in with us. In the cat’s absence, I want Mom to have a “being” to use to communicate and to have something upon which she can shower affection. I read a couple of sites that said patients both enjoy the companionship and cuddle factor of baby dolls, and also, as their communication skills disappear, they can use the baby to demonstrate a need that really applies to them.

Patrick went off to shop while I went to Mom’s to pick her up. Of course, I ran late and she was eating her soup in the dining room already when I got there. I just retrieved her immediately from the dining room. I said, “It’s your birthday,” and she said, “I know.” Her friend and former neighbor, Nancy, came to visit her this morning. Nancy’s birthday is also June 6. She and Mom bonded in the apartment building they lived in for about eight years. They both loved cats and they were both single women living alone in a somewhat shoddy old building. Nancy was very good to Mom as it became apparent she was getting sicker. I didn’t know she still kept in touch. She brought Mom a card, and a wooden wall hanging of a bunch of kitties in a row, and some flowers. I’m going to send her a card of thanks and to acknowledge her birthday.

I wanted to change Mom’s outfit, which she had now had on since Tuesday. On top of the Buckeye T-shirt and gray fleece pants, she was wearing a red fleece jacket. I stripped her of everything, underwear included, and even socks. I put on light blue pants, her pink striped T-shirt, a pink blouse and blue socks. I combed her hair and put deodorant on her underarms. Her armpits were a little bit smelly. I also fed the cat. He was lying on the couch today – he was there when I arrived and still there when I returned two hours later. He is still not eating much. Mom and I went off to Bob Evans and met Patrick there. We ate fairly quietly, all opting for eggs at lunchtime. I had previously thought we might want to just have a ltitle party for Mom at the picnic table outside her facility, but I had changed my mind in the meantime because I wanted to go someplace where we could walk a little and wear Mom out. We decided on Whetstone Park. Patrick went ahead to set things up.

As I drove Mom through the neighborhood near the park, she said it looked familiar. She often says things do not look familiar, so this was interesting. I told her I was sure she had been on these roads before, but not for a long time. When we got to the park, Patrick had set up some flowers and a balloon on a picnic table for us.

Patrick waits for his girls to arrive.

Patrick waits for his girls to arrive.

We sat down and Patrick lit candles on a four-pack of cupcakes he had bought for the occasion. They had hilariously bright icing on them. Very cheerful. We told Mom to blow out the candles. At first, she wasn’t sure what we meant. But she got the hang of it, with a tiny bit of assistance from me.

Mom blows out three candles, and I blow out the last one. Since she missed on, Patrick joked: 'You're going to have a baby!'

Mom blows out three candles, and I blow out the last one. Since she missed one, Patrick joked: 'You're going to have a baby!'

Patrick then advised Mom to reach into a giant birthday gift bag for her presents. She pulled out a box of chocolates, a stuffed dog toy and a visor, which he put on her head. She seemed a little flat. She wasn’t sad or anything, but she wasn’t really full of pep about this, either. She did say thank you for the gifts. She said to the stuffed dog, “How are you today?” I was glad to see that. She picked out a cupcake, the one with the yellow frosting (her favorite color), but she didn’t eat it because she was full. I suggested we take a walk. Patrick stayed behind to watch our things. We walked about, maybe, 50 yards on the bike path, and Mom asked to turn around. “I’m not in good shape,” she said. We decided to call it a day and I took her back to her apartment. An arrangement of orange flowers arrived from my sister and a plant surrounded by flowers arrived from my brother about 5 minutes apart. I told Mom she was very popular. I clipped her fingernails, and we agreed it was time for a nap. But she walked me to the lobby, where she then sat down to talk to her friends. An aide was walking out to her car when I was, and she said she often talks to my mom, which I appreciate. She said, “I know someday I’ll be there, so I never get mad at any of them.” She is right about that. It’s no use getting mad, and it’s not fair. None of this is Mom’s fault. But today, she seemed quite good. She was in happy spirits and even though she was not full of enthusiasm, she was not down, either. She was happy to have an outing. When I told her she was 72, she said, “How do I look?” I said not a day over 65. Couldn’t think of anything else witty to say. She still looks cute to me. When I left, I said, “Happy birthday,” and she said, “Happy birthday to you, too.”

Darling Bonnie with her visor, stuffed dog and yellow cupcake.

Darling Bonnie with her visor, stuffed dog and yellow cupcake.

I’m weird

I have a small case of the weeps right now. Just a few little sprinkles. Nothing major at all. But they are tiny tears of major relief. I have been avoiding checking into this annuity contract that I needed to surrender to pay Mom’s June bill because I was afraid of what I might be told over the phone. But I got the assisted living bill yesterday, so I knew I needed to check into it today. I finally called this afternoon. The kind customer service voice resembled the kind voice I got the first time I called this particular company, the one that made things quite easy. I asked if I could check on the status of my surrender request, which I mailed in early May. Clickety click and…the check was mailed two days ago. And it’s for essentially the full amount – no silly little fees removed. This means I will actually have enough in Mom’s checking to cover July, too, until I settle this last annuity of Mom’s – with a company that initially did not seem to be making things easy. I am actually having little “I’m tough” fantasies about calling that company and telling them there has got to be something wrong (read: illegal) about their unwillingness to honor my power of attorney. Now I can wait a bit to muster up the strength to make that call.

So a financial victory can make me cry. Seems silly, really. I get very worked up about the money. Mom was lucky to have amassed as much money as she did, considering her general lack of planning or saving as an adult. So managing it has always seemed like a delicate task. I have only managed it by spending it all, so managing might not be the right word. I feel protective of her small nest egg, is all.

I stopped in to see her today after a lunch outing. “Hallelujah,” she said when I walked through the door to the lobby, where she was sitting with some friends. “I thought I’d never see you again.” She has become accustomed to saying that even though I am making more frequent visits. She had just finished lunch. She was not wearing the outfit I put out for her on Tuesday before her shower. I found that outfit, blue pants, a blue T-shirt and a pink blouse, still sitting on her bathroom counter. Instead, she had on gray fleece (too hot for this weather!) pants and a Buckeye football T-shirt with a denim blazer over that. We went to her apartment and I asked her if she wanted to change or if she liked what she was wearing. She wanted to keep on her current outfit. Fine with me. It looked OK. I said, “Ohio State football,” reading her T-shirt, and she said, “Oh, is that today?” I explained I was just reading her shirt. I also asked her if I could comb her hair. “Why, are we going somewhere?” No, I told her, I just think it would look better if I comb it. I actually think she needs another haircut already.

I fed the cat some new canned food. Mom asked me repeatedly how my new cat is. I told her I have two dogs, and they’re not new. I showed her a picture of them. “But how about the cat?” she said. I told her I don’t have any cats. She seemed surprised. She said her cat has been doing well. I worried over him a little bit and combed him. I checked the litter, which showed no signs of his use. A visit to the vet is a must next week.

As I was leaving, I asked Mom if she wanted to walk me to the door or stay in the apartment and lie down. “I think I’ll stay,” she said. And then she walked out the door ahead of me, ready to accompany me to the lobby.