Archive for April, 2009|Monthly archive page
I met today with the administrator and a social worker at Mom’s facility to start planning for the Medicaid application. Turns out I have everything compiled that I need except for one document that indicates how much Mom earns monthly from her state retirement plant. A W-2 is not enough. I also will have to apply for her to be exempt from income tax on those earnings because once she’s on Medicaid, she no longer has to pay taxes. I forgot to mention the credit card, but I can straighten that out soon enough. My first task is to surrender her annuities to get that cash into Mom’s checking account so we know exactly how much cash we’ll have to work with. And the social worker will initiate the application process, but not until June 1. She’ll tell them about me, and then someone named Susan will call me for a preliminary resources assessment over the phone. I probably won’t go in for my interview until the second or third week of June, with paperwork in hand. There’s a good chance they’ll tell me they need something else – it’s just one of those things. And then once the application is complete, Mom will be covered from that date. She might not be approved for 60 days, but she won’t have a gap during which she is not somehow financially covered for her living and medical expenses.
What threw me a little is that the staff is planning for Mom to move into the nursing home in July rather than August. It turns out you don’t necessarily wait until you run out of money to make the move. You make the move and then whenever the Medicaid kicks in, it will pay retroactively for up to three months of nursing home expenses, but not assisted living expenses. Mom definitely will qualify as a U.S. citizen and for financial need, and the administrator assures me she will meet the final requirement of medical need. He said, “She has to be cued for everything.” I guess that means she might be able to perform many activities of daily living, like eating and dressing, but she wouldn’t perform any of them without being prompted to do so. She also isn’t much of a conversationalist. She can’t take her own meds and hasn’t for more than a year. She scored a 9 on her mini-mental exam. She is semi-incontinent. She does still know when she has to go to the bathroom and uses it appropriately, but she obviously has accidents, as well. At any rate, he is certain she will be medically approved for the nursing home.
I walked through the nursing home side of the facility on the way to this meeting, entering a different way so Mom wouldn’t see me beforehand and wonder why she couldn’t come with me to the meeting. I have to say, the place oddly offers me a little bit of comfort. Sure, there are many, many people in wheelchairs, people who look lonely, people with severe physical disabilities. But there are also staff everywhere. Nurses in every hallway. And I saw some residents gathering in a little lounge area and others watching a movie in another room. The place seemed more alive than the assisted living facility often does. The staff on that side of the place is small because people are expected to fend for themselves. I just feel like Mom will actually be safer on the other side. And because she is weirdly social she will probably enjoy seeing so many people around that she can greet. I think she is sort of an irritant to some in the assisted living facility. I hope she becomes a favorite on the other side.
I spent about two hours today going through bills and other paperwork of Mom’s to prepare for the Medicaid application. I’m not particularly organized about bills and records and neither is my husband. I generally know where things are, but I often have to go through a pile of things to find specifically what I’m looking for. I have been putting this task off, but now I am truly nearing the point where I must apply for Medicaid so Mom doesn’t experience a gap during which she has no money at all and no access to government funds. I’m actually still afraid of that happening, but when I touched base with the assisted facility administrator, he didn’t seem alarmed about where we are. He recommended applying now, and said Medicaid will see Mom and me through “spending down” the rest of her money. I’m thinking it should be fairly simple. Mom has no property. No car. No life insurance. Just two annuities left to surrender. Two sources of income. The one sticky thing is a credit card. I have been paying regularly on it for two years, but there is still a balance of some substance. I don’t know how that will factor into spending down. I was also told by a social worker that Medicaid allows applicants to prepay funeral expenses. But my sister said she will handle those expenses so we don’t have to set them aside now.
I visited Mom before lunch today. She was in the lobby. Her hair was sticking straight up in the back, so I figured she had had a nap this morning. We went to her apartment. I asked her how things were on the way down the hall and she said, “Not too good.” I asked what was wrong. She said, “The cat…” and didn’t finish. When we got to her apartment, the door was ajar. She must have absently walked out of the apartment. I was surprised because she is usually attentive to the door. The cat was in his spot on the bench by the window. His fur is getting matted, so I began looking around for the wire brush we have for him. I have seen it at Mom’s before, but I couldn’t find it anywhere today. Perhaps it’s in Mom’s purse. I didn’t look there. I dropped off a new box of cat litter. I found the six pairs of disposable underwear that I had thrown away on Friday now on Mom’s bathroom counter. I asked her about them and she said they were dirty. I realized she had retrieved them from her trash can. She said she didn’t know who had put a huge amount of trash in the can, meaning these underwear, and I said I had, and that that was OK, because a staff member will come and get them. I had put a huge bag of litter on top of these underwear, in fact, to indicate it was all trash that should be taken away. I actually saw some sprinkes of litter on Mom’s bathroom counter, too, making me wonder if she had stored the bag of old litter up there as well. I cleaned the counter. I found two more pairs of plastic underwear on Mom’s bed and asked if they were dirty. She sniffed one pair, to my dismay, and said they seemed clean. I decided to put them in the trash anyhow. One pair had a yellow tint to it, so I knew it was not clean. I noticed Mom still had the same socks on that she had been wearing last Monday. I helped her change into new socks.
Mom said she has been feeling a little depressed. She can’t articulate why, but I asked anyhow if she could tell me what was bothering her. She seemed fine when I arrived, had been sitting next to one of her friends in the lobby waiting for the dining room to open. She wasn’t able to say what was wrong. But if anyone knows what depressed feels like, it is my mom. So I felt kind of sad and wondered what could be affecting her mood. I told her my husband and I want to take her to dinner sometime this week, and she perked up at that idea. Now to actually make that happen… It’s probably easier for me to just take her to lunch. If we’re going to get her to dinner, we’d have to pick her up before 5 p.m., and 4:30 would be best so we catch her before she goes into the dining room. My husband had recommended taking her to brunch today, but I imagined a church crowd that would cause us to wait at Bob Evans, and I just didn’t feel up for that. Knowing she was down today, I will plan to call her this week to check on her.
I didn’t talk to or see Mom on Tuesday, Wednesday and Thursday of this week after taking her to the doc on Monday. That is possibly the longest I have gone without talking to her since her diagnosis. So I called mid-morning. She seemed a little fuzzy, but OK. She said she wasn’t sleeping. She tried to talk about a few things, but really just talked nonsense. She said there was a pile of … and then didn’t finish the sentence. This worried me a little, though it being Friday, I suspected she had some folded clothes on her bed since laundry day is Thursday. She also said, “What are you going to tell me?” She assumed I had news to report. She started reading to me from a piece of mail she had probably received months ago. I don’t know what it was. At the end of the conversation, she said, “Do what you can and can what you want.” Which I found quite amusing.
I decided to pop in for a quick visit before lunch. Mom was just coming out of her apartment to go to the dining room, but came back in with me to the apartment. Things looked pretty good. No ants. The litter box wasn’t too full, but I decided to empty it and refill it with completely new litter just to make any possible smell improvement that I could. The place wasn’t terribly malodorous, but just had a hint of a pee smell. I found six pairs of used disposable underwear between Mom’s bed and the wall. I need to push her mattress closer to the wall so she doesn’t see that as a place to deposit trash. She also had a lot of stray socks tucked against the wall, which I put in a drawer. I threw a few clearly dirty clothes into her basket, as well as a towel that had some brown smudges on it that was lying on the floor of her bedroom. That struck me as unfortunate, whatever it might have been. And I hung up one pair of pants. Mom had a completely different outfit on from the last time I saw her, so that was a good sign. But she had the same socks on that she was wearing Monday. I imagine her feet don’t smell so good.
I asked her what was going on and she said, “You came for a visit. That’s what’s going on.” I wonder if she is feeling a little bored these days. She doesn’t seem as compelled to visit with the goose outside the facility. Once again, a Canada goose is nesting in a patch of grass in the parking lot. Last year, Mom was obsessed with what she called “the creature.” This year, not so much.
I gave the nurse orders from the neurologist to wean Mom off of an antipsychotic drug and see how she does with that. I don’t think anybody knows for sure what to expect, but I hope it might clear Mom’s head just a little bit. It will be interesting to see if it reduces her confusion. Meanwhile, I am also trading e-mails and voice mails with the facility administrator about Medicaid. It’s time to apply, and he has some contact info for me. Presumably we’ll catch up with each other next week. I guess I can’t put this off any longer.
It is more and more apparent to me that sooo many people have a burden similar to mine. Or, in many cases, a heavier burden. Their own health crisis. Or a sick kid. Or two sick parents. Whatever. The more people I tell about this blog, the more circumstances I learn about that are similar to mine in some way or another. My younger brother is a lawyer who works on estate planning with clients whose parents have dementia. One of my younger sisters has a coworker with both parents diagnosed with Alzheimer’s. One friend’s mother’s dementia dramatically worsened after she broke her hip, and she was immediately moved into assisted living. I read listserves for caregivers and come across so many difficult family situations and unimaginable sorrow. So what makes me so special?
This awareness of the universality of this issue – basically middle-aged people with sick parents – seems to be influencing my own attempts to work through my emotions. I can be very self-absorbed. That’s not very hard. But I also seem to be deflecting something. I can’t pinpoint what it is. I want to appear tough, focused, able. I think I can pull that off. Sometimes I feel very vulnerable, sad, and completely scattered. Totally unable to concentrate. And I just sort of quietly suffer through that stuff most of the time. What else is there to do? Display my misery for someone else to see? The thing is, these moods can change rapidly, whether I have contact with Mom or not. I guess what might be at the heart of my dismay is that I feel no sense of control. I can’t control what Mom might do. I can’t control, as much as I want to, how I’m going to react to her next small crisis. I obviously can’t control my emotions and thoughts, as their comings and goings make no particular sense. I’ve never considered myself a control freak. But I do like a routine – and when my routine is disrupted, I lose control and I am out of sorts. And just about everything involving Mom is disruptive to my routine, even the routine things I do for her every week. I’m not even really making sense right now. But I have had these kinds of rambling thoughts for a couple of days.
So very much of my life is good. So many people experience suffering beyond anything I can imagine. What makes me think being a caregiver to a Mom with Alzheimer’s is so damn taxing? Or not even what makes me think that, but what makes it so? I have to function, and I am functioning. I can do my job. I can keep my house and finances (somewhat) in order. I can be attentive to my husband. Maintain friendships. I have fit this caregiving in with all of that. So all is well. Right?
Let’s see, where to begin. I didn’t visit Mom again until Saturday. My husband and I went out of town for about 24 hours, visiting our college town with two friends to see a band and just hang out a bit. Upon our return on Saturday, I stopped at a grocery store to buy Mom a new supply of disposable underwear and some deodorant. I got to her place kind of late, about 4:30, and she was already sitting in the dining room. I put the underwear in her usual dresser drawer and put the deodorant on the bathroom counter, hoping she would see it and remember how to use it. I visited her quickly in the dining room and told her I had put some stuff in her apartment, and then left.
Sunday morning, the receptionist called to say Mom was wandering around the dining room, reporting to the employees in there that she was out of cat food. “Well, she’s not,” I said. I had just delivered an 8-pound bag of cat food to her on Thursday. The receptionist said she would take Mom back to her apartment and show her the bag of food. I thought to myself that I ought to call Mom later and remind her she had a new, big bag of food and there was nothing to worry about. I never did make that call. But I did check my work voice mail about five times, and Mom never called. That suggested to me that she was not worrying anymore. I suppose I could have been wrong about that. I was just completely exhausted on Sunday, and I did very little. Some laundry, some cleaning up in the kitchen. Almost finished a book. Tried not to think about Mom too much.
Today, Monday, we had an appointment scheduled with Mom’s neurologist. We go there every six months, but every other visit is with a nurse practitioner, so we hadn’t seen the doctor in a year. I called Mom in the morning to let her know about the appointment. I hadn’t told her ahead of time because, well, there was really no point. When I called, she said, “Things are bad.” She seemed to be a little irritated with her friends. She said she was out of cat food. I reminded her there was a big bag of food in her room, next to the food bowls. She said, “I have no pee, none at all.” This meant she had no underwear. But I told her she did, in fact, have a drawer full of underpants. I was distressed that she wasn’t aware of that. I told her I’d pick her up after lunch.
When I got there, she was sitting in the lobby with her friends. I went to get a list of her medicines from the nurse, and while I did that, Mom apparently slipped away to the public restroom near the lobby of her facility. While she did that, I ran to her apartment to pick her up a pair of socks. For the first time that I had ever noticed, she was wearing mismatched socks, one black and one white, under her pink Crocs. We stepped outside and it was chilly, and Mom said she wanted a jacket. We went to her apartment to get a jacket and while there, I decided to change her socks. We were getting ready to leave – I was stressed, because we were running late – and Mom said, “I hope pee doesn’t run down my leg while we’re there.” That stopped me in my tracks. I asked her if she had any underwear on and she said, “I don’t know.” I showed her the full drawer, and she said she didn’t know they were there. I gave her a pair to put on, and she almost began slipping them on over her pants. When she took off her pants, I decided they needed to go right into the laundry basket since she had been going commando underneath. I picked out a very similar pair of light blue pants and she put them on instead without any argument.
I couldn’t find parking in the garage near the hospital clinic building so I used the valet service, something I have never done before. At the reception desk in the neurology clinic, the staff member asked for a photo ID and Mom’s insurance cards. I had completely forgotten about the need for these things and I was all aflutter about running late and I said, “I don’t have them. I just don’t have them.” I did have Mom’s driver’s license, though. I can’t recall if I ever reported here that I found it one day in Mom’s purse and tucked it into my own wallet. But the insurance cards are in my jewelry box, for some reason a place I consider safe. Thankfully I didn’t have to pay as a result of missing these cards. Mom’s insurance hasn’t changed in three years so I do wonder why one has to produce these cards at every clinic visit. We waited, and a nurse took Mom back for a blood pressure and weight check. I stayed in the waiting room. A little while later, a research coordinator who knew me said I should probably go back with Mom, as the nurse was reviewing her medicines with her. Well, had I known, I would have gone with her. That conversation wouldn’t have gotten very far. We confirmed the meds and the nurse left. And then we waited, and waited, and waited for the doctor. I adore this guy, but he always runs very, very late. I guess specialists in Alzheimer’s are hard to come by, because this clinic is always booked solid for months in advance. Our 12-month appointment with him will take place in July 2010 because he’s already that full next spring. Making him run even later is a new electronic records system that is forcing physicians to enter notes in a computer during patient exams and visits. I have lots of opinions about this, but they’re not really relevant here.
He and I talked while Mom took her mini mental exam and another test of her language, thinking and memory. I have been considering taking Mom off of Aricept in advance of the move to the nursing home, but he encouraged me to keep her on it and even consider adding Namenda, which might help her function. Her mini mental score was 9, out of 30, I think, down from 13 in October. So these meds aren’t exactly slowing her decline, but they help her with routine tasks, as I understand it. I told him I worry about how she will handle the transition to the nursing home. He said many patients do fine with the change, and just accept it. But families have a hard time with it. I can see how this would be the case. He said if she hasn’t developed aggressive and mean behaviors yet, she probably won’t. That is a relief. He sent me away with an order to the assisted living doctor to wean Mom from a strong antipsychotic medicine that he prescribed after the cat died in December when she was agitated and depressed. The neurologist said that drug could exacerbate confusion and unless she has really difficult behaviors, he thinks she’d do better without the drug. I’ll be interested to see how the staff responds to that – I, too, thought this particular drug was prescribed for only a month to get Mom through a rough situation, but the facility doctor kept renewing it. He’s supposed to call the neurologist in three weeks to discuss behavioral issues. I like the idea of these two doctors talking to each other. When Mom returned, the neurologist explained to her that he is taking her off one of her medications. I thought it was interesting that he bothered to tell her, because I think she didn’t really understand what he was saying. But he showed a respect for her by doing this. His whole way of speaking about her during our little interview made clear to me how he hopes for the best for his patients even though their illness leaves so many around them feeling very hopeless. He wants them to do as well as they can for as long as they can, and he said as much. I appreciate that in him. I told him I used to want Mom to be nearly catatonic by the time she entered a nursing home, and though he has heard of that desire among other caregivers, he gently suggested it’s not in Mom’s best interest. And I told him that I agree with him, but that now my focus for Mom is for her to be as happy as she can be, without fear, without anxiety, without sadness. Whatever it takes to get her there, that’s what I want. I have to trust that he and the facility doc will do their best to make that happen, too.
Mom was a little smelly today. I stopped over to drop off a new bag of cat food since she called yesterday saying the supply is getting low. I have learned that providing a new bag of cat food is an easy way to reduce her anxiety. I also had to drop off some medicines to the nurse.
I was in Mom’s apartment and I noticed it smelled just a little bit bad. Slightly like pee. Possibly some litter odors. And something else I couldn’t immediately identify. I scooped the litter and opened the new bag of cat food and replaced the food that was in the bowls. She muttered a little bit here and there while I was doing these things. I also put stray socks into her laundry basket. And I noticed some clothing items wedged between the head of her bed and the wall and was able to retrieve two pairs of used disposable underwear from that same area and throw them away. That could have been a definite odor source.
Eventually, Mom moved onto the bed to lounge a little while I just walked around, scanning things, checking her underwear supply, looking for ants (those traps are really working), looking for any trash that needed to be thrown away. All in all, the place looked pretty good. And then I got close to her and I realized what I was smelling – her stinky armpits. I went to her bathroom to look for deodorant. I asked her if she needed some. She came in and held up her toothpaste and said she has had that for awhile. I said, what about deodorant? “What is that?” she asked. I said it’s the stuff you put on your underarms. She’s out of it, she said. I wish I had known. She really needs that stuff.
I hadn’t seen her since Sunday, the day my brother left. She did call Monday, a little agitated, fretting about the cat. I wrote some notes from that conversation. “I’m sad because the cat’s going to be gone pretty soon,” she said. “What should I do? I’m confused.” I had no idea what might have had her going in this direction. She said the cat “wants to have a place” and “I don’t know how long she’ll last.” If this is Mom applying worries about herself to the cat, it makes me sad. She is anxious, she seems to feel a total loss of place. I don’t know how to convince her she has a place to live, a safe home. My husband asked if she might have some inkling that she’ll be moving to the nursing home soon. But I can’t imagine how she would have any idea about that. I wonder if she just has a sense of loss of self. And if it feels scary.
Then she called yesterday to say she needed new cat food. She sounded fine otherwise. I told her I’d bring her cat food the next day so she wouldn’t have to worry about it. I knew she probably had at least a week’s supply left, but I figured the earlier a new bag arrives, the better she will feel. “You’re so good to me,” she said. “I’m not kidding.” When she says this, it almost startles me. It doesn’t mesh with my memories of our relationship leading up to the diagnosis, when she made me feel like I could never do enough for her. Now, though, she does occasionally express sincere thanks to me. She once gave me a card thanking me for everything I do. I just love it, of course. Being appreciated, receiving affirmation, is always welcome. But it also makes me feel a little guilty. I don’t want her to feel that she is a burden. Even if she is. I know she would prefer not to be. I try to brush things off, tell her everything is just fine, no big deal. Today, she said it again: “I really appreciate what you do for me.” I tapped her on the leg and said, “It’s no big deal. I’m happy to do it.”
Yesterday on the phone, when she said I am good to her, I said, “Well, you’ve been good to me for a very long time.” She has no idea anymore that she raised me and my siblings as a single mom, that she struggled with alcoholism and depression, that her professional life was probably not very satisfying, that despite her various flaws, she did make sacrifices for me. “Well, we think the same,” she said in response. I guess that is somewhat true.
My brother came to visit over the weekend. He lives in New York, but is a visiting music director at a college in Indiana, so he drove over while he is so close and before his show begins its run. The things that went through my mind before he got here were interesting. First, I told him I wouldn’t tell Mom he was coming too soon, because then she might obsess and ask me every day when he was going to get here. Or, she might completely forget. I didn’t want to take the chance she would obsess. Then I thought to myself: What if he’d rather not visit Mom? That is sort of absurd, I suppose, but it did cross my mind. Because it can be difficult to visit Mom. But I just assumed he would plan to see her. He told us roughly when he would arrive and then we didn’t hear much from him anymore in the week leading up to his arrival. I felt a brief panicky need to set an agenda for his visits with Mom and suggested going to the zoo. My sister took Mom to the zoo in the summer or fall, I can’t remember, and it was a big hit. Mom loves to see little kids now and definitely loves animals. She and my sister focused on the apes for that visit. I thought we could try to see the baby elephant with Mom at our zoo. But then my stepmother reminded me that the zoo hosts a family day and Easter egg hunt on the Saturday before Easter so I quickly ruled that out. Too much of a crowd for my taste. And it was unrealistic, too – I sense the baby elephant is a huge draw, and is attracting long lines. That would not work with Mom.
So I told Mom on Thursday that my brother would be here the next day. She said, “Oh, good.” She loves the idea of something social. Then she paused and said, “I’m having trouble remembering who he is.” I told her that was OK, she hadn’t seen him in a long time. He’s her son, my brother. I showed her a picture of me and my two siblings together at Thanksgiving 2006. Oh, yes, she said. OK. I told her not to feel bad about it. She said, “I always know who you are.” And I said yes, that’s right, and that’s because you see me every day. It’s really OK to not remember some people very well. It’s hard when you don’t see them very often. I reminded her he was just here at Christmas, not too long ago. Then I changed the subject.
My brother called Friday to announce his arrival in town and noted he was making the call from the parking lot of Mom’s facility. I was happy about that, that he was visiting her first thing. I knew she’d think it was fun to have a visitor. He said later that she seemed fine. I had told him Mom talks in a sort of circular way and it can be tough to follow her. He said she made references to a second cat and he wondered about that. I told him she’s just generally confused about cat issues a lot of the time. On Saturday, we planned to take her to lunch at Bob Evans – always an easy way to please her. I picked her up with plans to meet my brother and husband at the restaurant. Mom and I were early, and they were both a little late. She asked me a good six or seven times: “Who else is coming? Do I know them?” And I explained each time: my husband and her son, who is also my brother (and of course I used their names). Sometimes she is repetitive like that, and sometimes she’s not. I almost felt she was a little anxious about it – an unknown, even though it was a positive thing. Once they arrived, we all got to chatting, and we had to be careful not to talk about things that didn’t include Mom: dinner later with our Dad and his wife, a vacation we’re trying to plan in May in North Carolina. It used to be Mom would catch on to stuff like that, even after the diagnosis, and she would just come right out and say: “What about me?” She didn’t seem to follow us very well this time. And in fact we tried to deliberately quit talking amongst ourselves and include her. She sits contentedly and quietly a lot now, but we didn’t want her to feel alone at a table with three other people. It went smoothly. We followed that with a visit to Kohl’s, where I bought Mom some powder blush. She said she wanted some pink for her cheeks.
On Sunday we made one final stop at Mom’s before my brother was heading out of town. He and I visited Mom together, just for about 20 minutes before her lunch was set to begin. At one point, she said, “Where are we going today?” But we reminded her that she was going to eat lunch in the dining room as usual, my brother had to go back to work and I had to do my Sunday chores – laundry and groceries. True, and something I tell her every Sunday, pretty much. We dropped her off at the dining room and she hugged us both. On our way out, I asked my brother if he was sad. “Just a little,” he said. He said he has put up armor against the sadness about Mom. I understand that. I was afraid I might be too matter of fact about everything and didn’t want to either force him to talk about something he didn’t want to discuss or miss an opportunity to let him talk if he wanted to. He didn’t feel any need to talk specifically about his emotions related to Mom. We did talk about how her behavior has changed somewhat, and that she is generally more quiet. I told him about the ants, and about how she says she doesn’t have an apartment anymore, and about how confused she can be about the cat. We kept the details about Mom brief. We touched on the fact that this summer, sometime in August, Mom will move to the nursing home. He and my sister will be here around that time for that, and for a family vacation my Dad and his wife organize every summer for the six siblings and spouses/partners. This year, we’re keeping it cheap and simple, having a staycation in our hometown. That is very good for me and my husband, the only “kids” who live in the same city as Dad. No travel required. Flexibility to see Mom through what may or may not be a difficult time for her. And lots of family support in case it’s a tough time in general.
I heard something on NPR this morning that made me think about the past with Mom. This was one of those StoryCorps interviews, and a woman was recalling her relationship with her mother, who had recently died. This woman, at about age 30, had told her mother she couldn’t endure any more parental criticism. She said if that was how her mother defined her role, she didn’t want a mother anymore. She wanted a friend. She cut off her mom unless her mom agreed to be her friend. Her mom responded about two weeks later, and they were able to maintain that relationship for the rest of her mother’s life.
I never considered cutting my mom off in that way. But I did find her behavior at times to be completely irrational and unfair. Considering the hands-off way that she raised my siblings and me, she had high expectations of us, or me, at least, as adults to look after her, consider her place in our lives and give her a pretty elevated status. At least that is how it felt to me. But I also lived alone with her after my siblings left for college and moved out permanently. So our relationship might have been different, our bond might have been stronger. And when I was ready to loosen that bond, she didn’t seem to like it.
I think our whole family might have abandonment issues related to Mom. But she has them, too. When I left for college, just 70 miles away, she cried her eyes out. Before I left for my first job after college, moving to Maine to become a newspaper reporter, we had several conversations about how she felt I was abandoning her by moving so far away. We worked it out. I think we both cried when I left. But my marriage may have been what felt to her like the biggest abandonment of all.
I recall so clearly the fight we had when I told Mom I would not spend Thanksgiving with her during the first autumn after I got married. We would be heading to Michigan, where my husband’s family was gathering, and also because a friend was getting married that weekend in Michigan as well. When I informed her of this, she said, “I might as well hang a sign around my neck that says nobody loves me.” I could not believe my ears. For one thing, the Thanksgiving holiday had never been all that meaningful. We ate traditional foods and hosted my aunt, uncle and cousins for the meal. They lived about 50 miles away. And since I had lived in Maine for three years, three Thanksgivings had gone by without my presence, so Mom had started meeting my aunt and her family halfway between their homes for a restaurant meal. This should not have been a big deal. And it was going to be the first of a lifetime of holiday compromises that would be part of the deal since I was now married.
Mom’s self-pity struck something in me that I didn’t even know was there. I had stopped at her apartment on my way home from an out-of-town assignment for my job. It was just a brief stop since she lived between the assignment and my home. And I probably thought it was a good time to tell her about Thanksgiving, which was roughly a month away. I had obviously not predicted her reaction. So when she said that, I began screaming. Really shrill, really loud. I told her I was leaving, I stomped onto the front porch of her apartment, and I was just crying, and yelling, and shrieking. I don’t really remember what I said. But it snapped her out of her own funk and she calmly said, “Maybe you should come back in.” And I did, and I eventually calmed down, and as far as I remember, we parted amicably. I think it startled her to know how strongly I could feel about such a thing – not about Thanksgiving, but about her claim that because of this one decision to spend a holiday away from her, I no longer loved her. We had never even talked about loving one another in our entire lives, and yet she was accusing me of this over something so trivial.
We never really had any other fight like that again. I know it was a milestone for me, to demonstrate to Mom that she could have that kind of effect on me. I really don’t know if she ever thought about it again.
For many of my adult years, I think I could count Mom as a friend. I could talk to her about anything. She knew essentially everything about me, some secrets, because I told her. I knew some of her secrets. I joined her book club for a time and became closer friends with her friends, whom I had known my whole life. I enjoyed this part of my relationship with Mom, and it’s one thing I regret about not having children – I will never enjoy a similarly close relationship with an adult child of my own. Ironically, Mom has now become very child-like. But she will never become an adult child – she is stuck at some young age, one that I can’t really clearly identify. So I’m glad I had time to be friends with Mom before I got this job of taking care of her. It has made the transition easier.
I stopped Mom’s Lipitor. I didn’t really intend to, though I had wondered for awhile what the point is of treating something like high cholesterol at this stage of Mom’s life. The nurse called in a bunch of refills for Mom, and when I went to pick them up, the pharmacist said the insurance company hadn’t approved the renewal of Lipitor. Probably a timing issue. So when I took the rest of the meds to the nurse, I told her what the pharmacist said. And we agreed it was not a big deal, that the renewal would be approved soon enough. And then I sort of flippantly said, “I don’t even think she should bother taking it anymore. I wouldn’t care if she didn’t.” And the nurse agreed. She said she would mention it to the doctor. I sort of gulped, glad that a health-care practitioner thought my logic made sense in this regard and simultaneously full of guilt for saying such a thing out loud.
A day or so later, the chief day nurse left a voice mail for me that the doctor said it was OK for Mom to stop the Lipitor. I am assuming he considers it ethical and sensible at this point to eliminate at least one drug from the collection she takes every day. It is also a cost savings, another thing to think about these days. So I just looked up Lipitor online to see exactly what its claims are. It increases good cholesterol just a little bit and can decrease bad cholesterol by 40-60 percent. OK, then what? Mom smoked for, I’m guessing, a good 40 years, or at least close to that. She was a heavy drinker for about 15 years that I am aware of. She didn’t seem particularly concerned about her diet, as I recall. As an adult, she was sedentary – she went through a period of walking to work or to and from a bus stop, but beyond that, she did not participate in any form of exercise. Except a brief try at tap dancing – and just remembering that makes me smile. And yet, until she was diagnosed with Alzheimer’s, she experienced no significant health problems. No cancer, no heart problems, no diabetes, nothing that I am aware of beyond her high cholesterol. She did have growths removed from her thyroid about 20 years ago, and has taken medicine to replace that lost function ever since. She is almost 72 years old. I consider her damn lucky as far as her health is concerned, given her history. And now that luck pisses me off sometimes.
I do not want my Mom to just die. But I certainly don’t want her to suffer, either. And I hope, I really, really hope, that she has reached the point beyond suffering with her dementia, that she isn’t frustrated, or afraid, or anxious. Or, worst of all, concerned that she seems stupid – when she conveyed those kinds of worries to me early in her illness, it broke my heart. That said, I also don’t see benefits in prolonging her life through the use of preventive medicine, either. I didn’t take her for the last mammogram that was recommended by her primary care physician. I don’t think protecting her from heart disease with Lipitor makes much sense. I frankly don’t know how my siblings feel about this, but I am hopeful that they agree. At this point in Mom’s disease, there is no bright side. True, she is still able to experience the pleasures of eating, limited social activity, cuddling her cat. But she is already spending more and more time sleeping. Or sitting quietly. She is shutting down, bit by bit. Materials I have read give me a sense of what the future holds. The patient loses all physical functions. Urinary continence is joined by bowel incontinence. She stops talking, and walking. Eventually can’t swallow solid food. Presumably, her addled brain will protect her from awareness of any of this. But those of us around her will be keenly aware. It just strikes me as so senseless. I don’t know what the solution is. I am figuring it out as I go. That’s the only choice we’ve got.
So, Mom did finally get her haircut on Saturday. I was full of anticipation, wanting to get the whole thing behind me. I’m sad that I felt that way. It’s no good for me to be full of dread, and I hope my general anxiety about spending a long period of time with Mom on an outing doesn’t somehow affect my behavior when I’m with her. But really, it probably does.
We started with lunch at Bob Evans. My husband joined us for this, thankfully. I asked him to, just to add some variety to the day. I also know Mom enjoys him. And I just wanted his company. He got the table while I went to pick up Mom. She was sitting in the lobby with several other ladies. I noticed she had the same clothes on that she had been wearing Friday, including the pants she changed into while I was visiting her to supply her with disposable underwear. I imagined she had slept in that outfit, shoes included. I’m not sure what actually prompts her to decide to change clothes these days. She also had on a red fleece jacket, so she knew she was going to be going out. I had forgotten to call her ahead of time, but this event was planted in her mind strongly enough that she seemed to have remembered it was coming up. We headed for Bob Evans, and Mom started talking some nonsense – nonsense to me, anyway – about whether she had done something wrong. I think it related to her conversation in the lobby. I tried to redirect her and asked if she was hungry. She seemed to enjoy the sunshine.
At Bob Evans, we all had some comfort food – Mom had her usual pot roast hash, I had chicken and noodles, and my husband had a breakfast skillet. My husband had ordered some onion rings before we arrived just to tide us over with a little appetizer. Mom tried to eat one, but it was hot, so she spit it out onto the table. She had a plate in front of her, but she made a point of keeping it on the table while it cooled. She eventually ate the fried part of the onion ring, and later, the onion. I don’t know if she liked it, but she ate one more. She ate most of her pot roast hash, but talked about feeling full about halfway through. She picked through most of it, but left some on her plate. When the server asked if we wanted dessert – offering a sales pitch about various pies – we all declined, saying we were full. Mom has a sweet tooth, though, and I asked her if she wanted ice cream. “Oh, yes,” she said. We ordered her a chocolate sundae. While we were waiting, she said, “I think I have to poop.” I was pointing out where the restroom was, but my husband urged me to go with her. Of course, I had to go with her, and I was ashamed to realize that I was resisting. I walked her to the door and waited outside. When another woman emerged, I then went in to see how Mom was doing. It’s a good thing I joined her, as she did not flush the toilet. I suggested she wash her hands while I went to her stall and flushed for her. I washed my hands, too. We went back to the table, the sundae arrived, and Mom dug in. She still eats fairly normally, but she’s a little sloppy. She got lots of ice cream on her mouth and didn’t immediately clean it off with a napkin, but eventually did. She ate most of it but finally gave in to being full. On our way out, I noticed Mom has stopped shopping in the little gift area of Bob Evans for a toy for the cat. They don’t carry cat toys, but she used to always look there for a possible goodie to take home with her.
We separated from my husband and were on our way. We had lots of time so we stopped at a little market to buy some almonds for Mom. We were about 10 minutes early for the haircut. I later learned that my stylist had called my cell and home phones to remind me of this appointment. Little did she know it had been burned into my brain since the day we scheduled it. My stylist talked gently to Mom while she washed her hair, and I encouraged Mom to relax and enjoy the feeling of the little head massage and the thorough cleaning. My stylist was rapid with the cut, finishing in about 15 minutes. Mom’s hair had been such a mess – it’s thinning, and it has become more curly with age, and she doesn’t groom, so it has looked messy for months. The cut was darling, and she has lots of curl in the back and even if she just gets up out of bed and doesn’t do a thing, it will probably be cute. Mom had to take off her glasses for the cut, and by the time it was finished, I think she forgot about them. The stylist was asking what she thought, and Mom looked bewildered, probably because she couldn’t really see herself. Even after I put her glasses on her, she never really did comment on the hair much – she touched it a little and said it was fine. I wonder if she forgot what it used to look like.
On the way home, we were just chatting about how we were both tired and ready to nap (true for me, for sure). Then Mom said, “You know what I would really like?” And I just wasn’t sure…but I said, “What?” And she said, “A Coca-Cola.” She’s funny about her Coke. She has a fridge full of it, but apparently doesn’t remember that anymore. She has always enjoyed pop. I told her she had a bunch in her refrigerator, and she said, “Really?” And I was going to just wait till we got back to her place to give her the Coke, but I thought, why am I denying her this small thing? A White Castle was right on our way, so we used the drive-thru to get Mom a Coke. It has probably been a long time since she had a Coke on ice with a straw, and I think she really liked it.
As we walked into the facility, I asked her if she had had a nice time, and she said yes. She thought the stylist was so nice. The funny thing is, about 12 years ago, Mom had gone to this very same stylist, and didn’t care much for her personality. I actually found her through Mom. Mom went to her only twice, I think, before they parted ways, mutually agreeing they probably weren’t suited for each other. I have been with her ever since. And I am thinking that I ought to take Mom to her more frequently. I don’t like seeing Mom with crazy hair, and yet it took me a long time to do anything about it. The thing is, I wasted a lot of energy dreading this three-hour commitment. Mom is confused, can’t carry on much of a conversation, acts a little funny sometimes, but she still gets pleasure from a little drive, a little meal, a little social time with a new, friendly stranger and, presumably, a little time with me. As long as she can experience that pleasure, I need to remember that she is relying on me to make these little things possible.