Archive for February, 2009|Monthly archive page

Always adjusting

I have become quite sleepy this afternoon. And I have a headache. I can’t attribute this to Mom. She hasn’t called and I just tried to call her and got no answer. It’s time for the ladies to sit in the lobby before dinner, I suspect.

But I have been just feeling a lot more stuff related to Mom lately. It is very hard to pinpoint what is going on. But I am guessing it could contribute to feeling tired. When this kind of thing happens – I start feeling a lot, or thinking a lot, or crying a lot, or can’t concentrate, or whatever – I tend to want to define the source and suppress it. Pronto! But this thing with Mom, it’s not so easy. Nothing dramatic has happened lately to signal a big change in her status. And maybe that’s the key – at this point, there is just this steady, bit-and-pieces decline. Every visit might bring a surprise. And what it forces me to do, of all things, is learn. I learn a new behavior to expect, a new obsession Mom might have, a new task she can’t complete anymore. And adjust. Until the next time.

I feel a little like a crybaby. Just think of what it must be like for Mom to be going through constant change in the anti-development direction. What an adjustment that must be. How tiring it must be to see something lying there and wonder, how did that get there? And what should I do with it? Or to be in a social setting and not have a chance to get a word in because the words just keep drifting away. If they’re there at all. From time to time since the diagnosis, I have found myself wishing for Mom’s rapid decline. Especially when we moved her to assisted living, and now with the nursing home in her future, I am concerned that the more aware she is, the more painful the transition will be. Wishing such a thing sounds so dreadful, so wrong, bordering on cruelty. But honest, it’s in the name of sparing her that frustration, or anxiety, or fear that I worry is at the heart of every move she makes. One can only hope that with decline comes something resembling peace in the mind of the Alzheimer’s patient, rather than an internal struggle.

Meanwhile, I am working on my own internal struggle – and part of that is making it more public, I guess. One thing that is not a struggle is this online journaling I have begun. It is setting something in me free.

Continuing cat confusion

I took Mom’s cat to the vet today. Just a checkup and vaccinations – proof of vaccination is required in the assisted living facility. I’m only four months late on updating his annual vaccine, so, not too bad… The cat is doing fine. He has lost two pounds since August on this vet-provided food (good for his bladder, but also for his waistline, I guess).

This business with the cat is somewhat maddening. Mom called yesterday to say the cat had gotten out, but was now sitting next to her watching her talk on the phone. I’m pretty sure he had never left the apartment. I told her I was going to be taking him to the vet, and she said she didn’t think she should come along. I wholeheartedly agreed, mostly because taking Mom anywhere adds many minutes to all portions of the trip. She is able-bodied, but a very pokey walker. So today when I showed up to pick up the cat for the vet visit, Mom said she wanted to come with me. I told her it might cause her to miss dinner, which was true. So I didn’t think she should risk that. “But I want to be with him,” she moaned. Really, she was whimpering a little. But I held fast, already running late and knowing she would slow me down way too much. I told her he’d be fine, we’d be back before she knew it. She walked me to the car. The whole time, she just seemed sort of rattled.

On my way into her apartment, two of her friends stopped me to talk about how confused Mom is about the cat. One said she had been crazy all day wondering where he was. I told them how I think that if she can’t see him, she doesn’t think he’s in her apartment. And maybe because of that lack of conceptual thinking, when she is out of her apartment, she thinks he is out, too. She talks about him being all over the building, upstairs, downstairs (there is no downstairs) and I simply cannot guess what she is referring to, except perhaps her own movement around the place for meals and activities. My sister had a similar theory about Mom’s attachment to her earlier cat, one with which she was completely obsessed. Mom would say the cat was afraid to be alone at night, that she didn’t like to be left alone in general. My sister thought Mom applied all of her worries about herself onto the cat. It made pretty good sense but had never occurred to me.

Mom was semi-obsessive with the two cats until recently. When the other cat died, it’s as if a piece of Mom’s brain broke off. She is unclear about how long she has had this cat, how old he is, what his name is, what his sex is, whether she has one or two cats, and where this cat is at any given moment. It’s odd, just listing that, I recall that one of her friends at the facility said Mom doesn’t know the five W’s about the cat. So true. She runs through them at any opportunity, but she retains nothing. But she can remember that she thinks she is running out of cat food.

So unfortunately, many conversations lately with Mom have revolved around the cat, but have made no sense at all. And it’s as if she has an inkling that she isn’t making sense. I have asked her numerous times if she would prefer not having the cat anymore so she doesn’t have to worry. But that does not seem to be the answer. That suggestion borders on upsetting her.

A bright spot at the vet: I really like my vet. We always talk about health issues, perhaps because I worked for years at a medical center. He has a somewhat defective heart, and has gone through five pacemakers because he had to get one when he was very young. He also has an aging mother, but she lives alone and seems to be OK for the most part. And then we were talking about Mom a little bit, and I told him Mom had wanted to come along. “Tell her she did,” he said. I cracked up. Good answer. He felt a little guilty, but I assured him that it’s OK to joke. Mom would even probably get a kick out of that one.

Life cycle

I visited Mom this morning about 45 minutes before lunchtime. On Sundays, I typically visit just before lunch or dinner to get the visit in but also to have an automatic deadline built into the visit. My stepmother teased me early on about figuring out that strategy. Her mother was in the same facility, on the nursing home side. She visited her mother every Friday, Saturday and Sunday throughout her mom’s stay there – the three days of the week on which she didn’t work. I don’t manage that. Usually Sunday and at least one weekday, I get over to visit, scoop litter, check on various supplies and just see how Mom is. That is my usual plan, but Mom’s needs sometimes dicate the need for at least one more visit each week.

I feel sort of guilty about not visiting more, but then again, not. I let Mom’s attitude and mood serve as my guide. If she is having a bad week, I visit more frequently. If she is having a good week, she is adjusted to her environment and has friends she spends time with, gets the rest she wants and is, by my estimation, as content as she is able to be. In fact, last year at Easter I had her over for dinner, and just after we ate, she put her coat on and was ready to go. I felt briefly like I imagine the mother of a teen-ager might feel – Mom was more interested in her friends than she was in me. She wanted to be back in her comfortable environment, chatting with her lady friends in the lobby or the lounge. I actually was quite pleased she had such a strong affinity for her facility. And I frankly was surprised that my feelings were a little hurt. But that is the nature of this relationship – the emotions often don’t make any sense, or strike at the most inopportune of times.

Today, I am feeling primarily relief. When I got to her apartment, Mom was sitting on her bed, studying a pair of socks. I would have guessed that she had just woken up from a mid-morning nap, but her hair looked too combed for that to be the case. We chatted. I got her some better socks to wear today to match her beige and brown outfit. I scooped litter. We sat and briefly watched “Bad Girls Club” on the Oxygen channel because, for whatever reason, that’s what Mom had on – a sign she is really not absorbing what is on her TV at all. And I picked up little bits of trash and threw them away. Mom was never much of a housekeeper, and with weekly cleaning of her apartment, she is living in the most tidy environment of her adult life, I suspect. But she tends to treat the world as her wastebasket. She ate a chocolate from the Valentine’s box my husband gave her and left the wrapper on the table. She leaves tissues lying around, and half-eaten candy bars, and empty cans of nuts. And occasionally her disposable underwear. And she has got something weird going on with socks. I find them everywhere – on her bathroom counter, the floor, her nightstand, her coffee table, in her purse. I wish I could guess what she is thinking about all of the socks.

Mostly, though, she was pretty normal today. She let out a few good guffaws, seemed completely at peace. Ready for lunch. Not particularly interested in me but not unhappy to see me. Oh, and the Canada geese have returned, which I suspect will become her new spring obsession. Last spring, a goose laid eggs on a nest in the yard area right outside the lobby of the facility, and Mom and some of her friends spent lots of time visiting with the goose and observing her motherly activities. Mom said today that she remembers that happening several months ago. She has a good memory for all things animal-related, strangely. Sadly, once the goose eggs hatched, the mother and babies were gone the next day, down to the river, I guess. But the pattern seems to be repeating this year, and for that, I am glad. Little reminders of the cycle of life can be soothing when one is otherwise often contemplating this lengthy path to death.

Baby steps

No calls from Mom today. I thought about calling her to make sure all was well with the cat. But I figure it’s fine to leave well enough alone. If she’s not calling, she’s not worried about anything. I am glad she is still able to make the call to my work number. I have feared at times that that capability is slipping, too.

I decided to take a bus today to an interview rather than dealing with parking. It’s a small green thing I also like to do from time to time. I thought I could get a little fresh air and sunshine, and wake myself up with brisk cold air so I’d be alert for the late-afternoon assignment. I noticed as I was walking to the bus stop that my head was hanging dramatically forward. I was really slumping. Looking at the ground. I catch myself walking that way around the office, too. So I stood up straight. Looked up. It immediately made me feel a little better, just a little more alive. Made me feel taller. Probably made me look better. Or at least less pathetic.

And all I could think was: Keep your chin up, girl. Figuratively AND, it appears, literally.

That darn cat

Well, today was a two-fer. Mom called again at about 4 p.m. to report that the cat was missing. She sounded pretty distressed. She even said, “I’m distressed.” So I told her I would come check it out. I had heard this story before, and the last time, by the time I arrived, the cat was in her apartment and I assumed she had just lost track of him. I had to get my things in order at work so I could just leave and not plan to return. So I called Mom at about 4:15 to check on the situation, hoping that by then the cat would have appeared before her.

No such luck. So I told her I’d be right over.

When I arrived, Mom was pacing around in front of the building in her raincoat. I was stunned – she was really focused on my arrival. And she had probably set off concern among the facility staff, who might have feared she was trying to escape herself. We went to the apartment, and I looked in the cat’s usual spots – on the bench by the window, on the bed, in the closet. No cat. I looked under the bed and the couch. I began to be concerned. This is one fat cat so he’s not easy to hide. He also had never been much of a hider, unlike his sister, who recently died, and who ran for cover anytime I visited. With no cat in sight, we went to the receptionist to see if anyone had reported seeing the cat. Nothing. Mom and I walked around, and she muttered things that might be meaningful, about an area where dogs go. I thought perhaps there is a little courtyard for the little dogs living there to use the bathroom. But there wasn’t any obvious place. We went up a floor and looked around. I looked around the apartment thoroughly a total of three times before I gave up on that. I told Mom to go to dinner and told her to just wait and see, that the cat would have to turn up.

As I was leaving, the activities director happened by, and she said that once before, Mom’s cat got out and visited another apartment at the far end of the hall. So she and I scouted that apartment while an aide checked across the hall. No cat. We ruled out the neighbor across from Mom, who had come out to go to dinner and said nothing about the cat. Then we tried the next door neighbor’s apartment. The activities director walked in, and there was the fat beast, just sitting in the living room. I ran after him, and he was easy to retrieve from under the bed. He is too fat to move swiftly.

The activities director told me as we were returning the cat to Mom’s place that Mom had once carried the cat into the dining room with her. I was suspicious that she was doing inappropriate things, like letting him out to take a walk or trying to carry him to activities in the lounge. But the dining room – well, I’m not sure what she was thinking. Thankfully, this neighbor is quite sweet. When I told her what had happened (she was already at her dinner table), she thought it was amusing and told me not to worry one bit. I appreciate that. Mom said she might faint from the good news.

I asked if the cat might get kicked out because of this. The activities director said no, this was really nothing. Happens with some frequency. I need to keep that in mind when I worry to facility staff – they have probably seen so much. Mom might be a challenge, but she’s not the worst resident they’ve ever had. Not yet, anyhow…

Disinhibition

I spent lunchtime today watching my mom disrobe in phases, sit around pantless on her bed, study a bra to figure out what to do with it, and ultimately completely change her outfit for no apparent reason. This was funny and endearing, and I mentioned before that nakedness was no big deal in my household growing up. But it also is a bad sign that getting and staying dressed no longer necessarily comes naturally to Mom.

I know the assisted living staff is supposed to help her with getting dressed, but I’m pretty sure they want to reserve that assistance for people with physical disabilities. They also might not find out how much help she needs without some visible indication, and that worries me a bit. By visible indication, I mean Mom being inappropriately dressed, or undressed, in a public setting. Mom doesn’t know to ask that she needs help. The receptionist today handed me a jacket that had been left somewhere in the facility and sure enough, it was Mom’s. But Mom didn’t recognize it. What I want to know is, why did she take it off?

It seems Mom is skating on the edge of eligibility, I think – which isn’t disastrous, because her financial status indicates she is destined for Medicaid and a nursing home in a matter of months. But it’s just…another sad thing. That can be funny, as well.

We ran into the aide who gives Mom her weekly shower, and the aide said, “Are you still mad at me?” This was in reference to their weekly argument about the shower. Mom is difficult about it, but this aide seems to take it in stride. The night staff gave up on Mom’s showers, so I adore this aide for sticking to it. Mom says one of the reasons she doesn’t like being showered is because she has to be naked around someone she doesn’t know. That modesty does not apply to me – and I guess that makes sense. But I think there’s really something else she doesn’t like about it. She referred to it a long time ago, when it became clear to me she wasn’t being very hygienic. She said she felt uneasy in the shower – there must be some sort of vulnerability about it that she cannot articulate.

So she had called at about 10 a.m. I asked how she was. “Well, pretty bad,” she said. “I’m running out of clothes.” Well, if there’s one thing Mom doesn’t suffer from, it’s a shortage of clothes. She has tons of clothes. I suspect she was talking, again, about the disposable underwear. She doesn’t use that word anymore, underwear. So I went to see what was going on. Sure enough, her underwear drawer was empty. I had a stash in her bedroom and filled up the drawer. And I looked in her closet, and it appeared that many of her clean clothes had been recently folded and placed around the top of her walk-in closet. That could be confusing, because she tends to keep everything on hangers. So I started hanging up a bunch of pants, and when I turned around, she had taken off her pants and was showing me the inside, where she had placed a maxi pad “in case the pee came out.” Good thinking on her part. Then, naked from the waist down, she started lounging with her cat, petting him and visiting with him while I finished up in the closet. Earlier, while I was scooping the litter, I found her in her bedroom holding a bra by its straps, wondering what to do with it. She already had a bra on, so I told her she didn’t need it. I should have put that bra away, come to think of it, because seeing it made her think she should put it on. This is a common issue – she rifles through her things, finds something, leaves it sitting around, and later comes upon it – and thinks its presence means she must tend to whatever it is.

She eventually put on some underwear, but she wanted a new pair of pants. We picked out a pair and she put them on. And then she took off her shirt. This was sort of an autopilot thing, because I don’t think she had another shirt in mind. She had begun the process of changing, so she had to finish, I’m guessing. I picked out a pink T-shirt and black jacket to finish her outfit, and she was done. Of course, she also put on her adorable pink Crocs.

There are some things you don’t ever expect to say to your mom. One of those would be “You should probably put your pants on so you can go get some lunch.”

A parent’s right to die

There is a lot of discussion going on at The New York Times blog, “The New Old Age.” The writer there and another blogger recently wrote about how their mothers chose to end their own lives – one through suicide by suffocation and the other by refusing food and water (neither had Alzheimer’s, but both had health problems). Both posts prompted lots of comments, most of which were supportive of the mothers’ decisions. Of course, there are detractors who cannot relate to the idea that two women would write about this and not express guilt or anger about their mothers’ decisions to deliberately die. Some claim a person can’t ever REALLY be OK with a parent’s choice to die. I don’t know what I would have done had my mom elected to kill herself after her diagnosis. But what I do know is that she would NEVER have voluntarily opted for this path to death, and I don’t think anybody would.

I left this comment on the NYT blog:

I wish my mother had the ability to make a decision about her own death. By the time she was diagnosed with Alzheimer’s, her competence was compromised. She was aware enough to sign a durable power of attorney and agree to forgo dramatic lifesaving measures, but I don’t see that as likely to apply for years. So now this smart, funny woman is destined to finish her life in a nursing home after first draining her bank account to pay for assisted living for less than two years. She still gets some pleasure out of life, tending to her cat, eating sweets and watching TV, but she is becoming more and more withdrawn. At some point, social activity won’t be meaningful to her. Meanwhile, she is prescribed cholesterol-lowering drugs and thyroid medication – for what purpose? To prolong a life like this? I am not inclined to selfishly want my mother to keep living for my own comfort. I am selfish because I don’t want to watch her die in the way she inevitably will.

Nothing to talk about

My husband and I took Mom to lunch today – sort of a Valentine’s weekend treat, though she isn’t really aware of the holiday at all. Christmas didn’t even have a whole lot of meaning this (or, really, last) year so something like Valentine’s Day doesn’t really stick. But I wanted to take her out, and I wanted my husband to go because he and Mom have a funny little relationship built on a love of teasing each other. Before we were seated, my husband presented Mom with an enormous box of chocolates. She loves sweets. He loves to give gifts. Of course, we went to Bob Evans. I don’t foresee ever taking Mom to any other restaurant. She likes Bob Evans and it’s a friendly place to take her.

As usual, Mom had pot roast hash – eggs, potatoes and cheese with pot roast scattered about. She looks at the menu, but doesn’t really ever try to make a choice anymore. I just order for her, and she always likes it. The last few times we’ve eaten there, she has filled up on this meal and even occasionally can’t finish. Today, she ate it all and wanted more. We ordered french fries with gravy for the table, and she ate a decent helping of fries before finally declaring herself full. One funny little thing happened – she said she wanted more coffee, so I put her cup on the edge of the table, but it didn’t attract a server. My husband eventually got up and took the cup to the counter to get a refill so Mom wouldn’t have to wait. When we put it back in front of her, she said, “I’m so full. I’m not sure I’m going to be able to drink this coffee.” On a bad day, that would be maddening. My husband and I just smiled at each other.

Next, we went to shop at Kohl’s. It was Mom’s favorite store, along with KMart, before she got sick. She wanted a new pair of gloves. I tell you, gloves are the most difficult thing to keep track of for my mom’s particular brand of Alzheimer’s. She always had an obsession about her gloves as an adult – she was constantly checking to make sure they were in her pockets, in her purse, wherever. Since she moved into assisted living, she hasn’t needed gloves all that often. But the ones she moved in with have disappeared. I got her a pair for Christmas, and they were lost before my brother and sister arrived a few days after the holiday. My sister bought her a pair, too. They’ve all gone missing in her small apartment. So today, we found a cute pair with hearts on them. They were $1, a nice clearance price at this time of year. When we were leaving the store, Mom paused and said, “Oh, shoot, we forgot to get gloves.” I reminded her we did find a pair. I put them in her new purse when I left her apartment. I frankly don’t expect to ever see them again. Thankfully, spring will arrive somewhat soon.

My husband made an interesting observation when I got back to the house. He said Mom is much quieter than she used to be. It’s true, earlier in her illness, she was a chatterbox. Perhaps the thoughts that wouldn’t stick were still floating around in her head, prompting her to talk. This time, she sat fairly quietly during lunch. My husband would ask questions, and she’d answer, or try to answer, and he’d usually make some sarcastic comment in response, and she would laugh. She still laughs at his jokes. She said a waitress at the restaurant reminded her of me – she said that twice. She said, several times, that I didn’t eat much. This was after my plate was cleared, giving her enough time to forget I had eaten a big omelet. In response to my husband’s question about what her mother used to cook for breakfast, Mom recalled that her mother was drunk a lot. But when I dug a little bit to see if she had any memories of her sister, she didn’t. That still surprises me, that she cannot remember her sister but can remember her drunk parents.

I have noticed she’s quieter, too, but over time I have stopped worrying about whether we’ll have anything to talk about when we’re alone together. Just going on an outing or having company is pleasurable for her, so if we’re short on conversation, it’s not a big deal. But it does make me wonder about the disease. When patients withdraw, are they just blank inside? Are the plaques and tangles erasing things altogether, and not just from short-term memory? Mom still has basic language, even though she can’t often find the exact word she wants – that has been a problem for her from the beginning. But I hate to think she can’t even be occupied by thoughts. Unless, of course, she doesn’t notice, and isn’t bored. If it’s just emptiness but with this disease the emptiness has no negative connotation, then perhaps there’s nothing to worry about.

Mom’s still got a sense of humor, too. She asked my husband a question about something that had happened in the past, and he answered right away. “You’ve got a good memory,” she said. “And you know, I don’t.”

‘I wish I were normal’

Mom called today to say her cat had escaped. I didn’t really believe it was true, as I know this cat well. He lived with me for about 11 years before moving in with Mom. He is very sedentary and not that curious about the outside world. I think for Mom he has become a bit of a concept – if she can’t see him, he must not be there.

I said, “Do you want me to come over?” Her response: “What you said just now, that sounds good.” Poor Mom. So I hopped in the car. It was lunchtime and I had an errand to run anyhow (more banking for her) so it was not as inconvenient as it could have been.

When I arrived at her facility, she met me in the lobby. This was during her lunch, and I was concerned that she was missing her chance to eat. She said she had eaten some of it. I don’t know if that’s true. We went to her apartment, and there was the cat, standing on the chair and ready to relocate to his favorite spot on a bench by the window. He seemed to be his usual self, not necessarily recovering from an adventure in the halls of an assisted living facility. Mom can never describe what it is that really happened, so I am guessing he never escaped, but that she lost track of him for awhile and it worried her.

Whenever I visit, I scoop the litter boxes, which are situated under the sink in Mom’s bathroom. While I scooped, Mom sat on the toilet. We have never been modest about the bathroom so it was not a big deal. But I said something to her, and she said, “I’m trying to poop.” So she needed a moment to process that rather than speaking. She finished, and got up and stood behind me, talking. She said it was her fault the cat got out. And then she said, “I wish I were normal.” That just broke my heart a little bit. I didn’t want to make a big deal, so I said, “Have you not been feeling well lately?” And she didn’t really answer. But she didn’t seem upset or anything. She just had had a moment of recognition that she is confused about that damn cat. I’d prefer it if she didn’t recognize that she is confused. I hate that.

And she didn’t flush the toilet. So I did.

No drama

And then there are days like today. I haven’t talked to Mom all week. This can be a good sign, because she usually thinks to call me when she needs something. Or it can be a bad sign that she has forgotten she can call me anytime. So I called this morning and she sounded pretty peppy. She is doing fine. She would like some more cat food. She never likes it when there is an apparent shortage of cat food and she seems to have her own internal gauge of when the supply looks low. I can take care of that – just a quick visit to the vet and delivery at my next visit to Mom’s. I told her I’d bring a new bag over in a day or two. “Well good, that makes me feel better,” she said. And when there was nothing else to discuss, she was ready to hang up and go on with her day. And now I can peacefully go on with mine, as well.