Archive for January, 2009|Monthly archive page

How it began, I think

I am a bit concerned that I sound so completely negative about this experience, and about my mother. I have actually come a long way, if you can believe it. And I think things started out so badly for me, emotionally, because for some time, Mom’s symptoms resembled just plain irritating behavior, and it took me quite awhile to realize that she had either memory problems, confusion, or both.

I am around her more than my siblings are, but it was a family vacation for all of us that was the first strong indicator for me that there was a problem. We were all in Seattle visiting my brother. Mom flew out with my husband and me. I don’t recall the flight particularly well, but the vacation itself, in my memory, is a series of incidents in which Mom said something that seemed completely out of place. We were all sitting around the table eating dinner, talking, and out of nowhere, she said, “What are you all talking about?” We were driving to a prime photo-taking spot and Mom said she had a camera. When we got there, she said, “Well I don’t have my camera WITH me right now.” That was one of the funniest moments of the whole trip, but looking back, it’s a clear indication that her thinking was a little off. I thought she was hard of hearing, and I suggested sometime around that same time that she consider a hearing aide. She thought it would be too expensive. This coincided with her apparent lack of familiarity with her banking and investing, which should have been a bigger clue than it was to me that there was a problem. She became suspicious of her bank, and actually wrote a letter accusing the bank of moving her money around without her permission. I began accompanying her to bank meetings. Eventually, I started paying her bills for her. This was when it was dawning on me that Mom had a serious problem. She had been a bookkeeper for a newspaper, had aced her accounting class as a nontraditional student. Finance was not mysterious to her.

And then my sister said that when Mom visited her new house for the first time after my sister had moved across the country, Mom could not remember where her bedroom was. She would stand at the top of the steps and ask, “Is my room down there?” Mom had been very out of sorts about my brother moving from Seattle to New York the same summer that my sister moved from New York to California. It really turned her world upside down, and only later did I realize that a change of that magnitude was very hard for her to comprehend and was taxing to her to think about. When my dog died, she took it extremely hard, almost to the point that I thought her reaction was over the top. And probably the biggest symptom, which I didn’t recognize until much later, was her complete obsession with her cat. Mom began refusing to go on day trips or overnight trips because she was concerned about leaving the cat alone. She lavished the cat with special foods and toys. She said the cat was her best friend. She said the cat was the only being that ever showed her any love. This behavior was completely abnormal. And yet, it was also upsetting to me to witness my mother’s devotion to this gray and white snotty little kitty after a lifetime of longing for a hug, a kiss or an “I love you” for myself. I pretty much hated that cat. And yet, it was probably so good for Mom to have something like that to focus on, and I imagine that cat offered lots of security at a time when Mom was literally beginning to lose her mind. The cat eventually died, suddenly, after the Alzheimer’s diagnosis. Mom said a tender goodbye and we had her cremated, and I must say, Mom handled it pretty well.

So, for years, actually, Mom was slowly declining, and it was just subtle enough to appear to me that in her older age, she was becoming more and more needy for my attention and help. She also had an irritable edge to her that she hadn’t had before. And rather than slowing down to think about what might be happening, I became increasingly angry and impatient with her. Several years have passed now, and I have really turned those emotions around. She can still be argumentative and irrational at times, but I have learned, over time, to go with the flow, not argue, and just try to reassure her, no matter what we’re talking about. Keep her calm, make her feel safe, reduce her anxiety, make her laugh. The disease is complicated and complicating, but ultimately, the key for us is to keep it simple. It’s better for both of us.

Wandering

I’ve heard and read about wandering by Alzheimer’s patients. A coworker of mine once found a wanderer at her door in the wee hours. I know there is potential for it, but I have tended to think Mom won’t wander because she has led such a sedentary life. It’s just not in her to go walking around. However, that is the old Mom. This Mom still tends to be somewhat lazy, a trait that my spouse and others who have married into my family tease us about. We all like to be horizontal, as in stretched out on the couch, sleeping late, going to bed early, napping on weekend afternoons, sitting at every opportunity. It’s just our way, and Mom seems to be the source of that tendency in all of us. But the Alzheimer’s brain is so transformed that very few of Mom’s original tendencies can be relied upon to last. Thankfully, the laughter is still there. And she is happy to take a nap once or twice a day. But I observed her tonight a bit and think she is also driven by habit, by what little recall she has. She sees a door, and she opens it. And walks through, even though she has no destination in mind.

We were in her apartment. I popped in just briefly to supply her with underwear before a major winter snowstorm blows through. I was eager to get back on the road. I think she was confused by the fact that I did not take off my coat. We sort of danced around each other in the apartment, me stocking her dresser while she talked a little bit about the cat, and about how dinner was late tonight. I told her I needed to leave and she opened her door and walked out into the hall ahead of me, not really knowing where she was going or what I might be planning. She likes to walk me to the door when I leave, so she came toward the lobby with me, but then she seemed to be drawn back to her apartment – back through the door. It could also be that she is confused sometimes about where her apartment is. The other day, she peeked out her door to see whether people were going in to lunch yet, and the next thing I knew she was trying to enter an apartment across the hall. That quickly, she had forgotten where she lives.

I also think, at least in Mom’s case, that a quick departure is one way to deal with difficult emotions. A couple of weeks before Christmas, the nurse called me at work to say Mom had stormed out the front door of her assisted living facility. Staff had a hard time coaxing her back inside. An hour or so later, Mom emerged from her apartment with her coat on, so the nurse asked me to come and be with Mom to see what was going on. By the time I got there and asked her why she had her coat on, Mom said, “Because I’m cold.” But I heard stories about another resident, one of Mom’s friends, having a really bad morning as well. And it occurred to me that the two probably had a fight. And because Mom is very child-like, stomping away was probably the only solution she could think of to end the fight and cool down. This is a guess, of course, because Mom had no memory of a fight, either. That single departure scared the facility administrator so much that he asked me to stay with Mom for two nights to ensure she wouldn’t try another escape. Sure enough, she was a perfect angel. No escape attempts. No weird behavior. Mostly, she just wondered why I was around all the time. I thought after that that I was in the clear, that it was a one-time thing. But I’ve heard from receptionists that Mom has slipped out the front door a time or two since, but has been convinced to come back in. So I might have a wanderer on my hands after all.

Laughter

Today I had a good visit with Mom. And I didn’t expect to. I checked my office voice mail this morning, and she had left three messages in the course of about four minutes, sounding very confused. She has a hard time conceptualizing that she can speak to that voice mail and know that I will eventually hear what she has said. That was actually another early sign of disease – she was confused about the answering machine at her house. I would call her and leave messages, and later she would tell me that she was responding to me – meaning she was standing there listening to my messages and talking back to the machine – and she didn’t understand why I wouldn’t acknowledge what she was saying.

She wasn’t sitting the lobby of her facility when I arrived this morning, about 40 minutes before lunchtime. She often hangs out with friends in the lobby, and beginning about an hour before mealtime, the lobby fills with residents waiting to file into the dining room. She was resting on her bed when I got to her apartment. She seems to be taking mid-morning naps a lot these days. She came out and immediately said, “I called you.” I was braced for what she might need to report. I asked if something was wrong. “No. I just called you.” Whew! Then she said, “Whoever hears me talking must think I’m an oddball.” She simply does not get that only I hear her messages, but I reassured her that that was the case. “Oddballs are usually entertaining,” I said. She laughed. She muttered something that I couldn’t hear and I said, “What?” “I don’t remember,” she said. And she laughed and laughed. I am always so relieved when she laughs. And I think that despite everything bad that goes along with Alzheimer’s, I am lucky that Mom has retained so much of her love of laughter. She always had a strong, loud laugh, and she still does. Now she just aims it at herself most of the time. And what a relief that is, that she can laugh at what must be such a frustrating thing, forgetting in seconds what you wanted to say.

I want to praise you

Two people told me today that I am a good daughter. One was my husband, who is constantly concerned about my psyche. The other was a coworker. I told him I was taking Mom to lunch and he just said, “You’re a good daughter. It’s kind of like parents with kids: you love them even when you don’t like what they’re doing.” I guess that is true. I often don’t particularly LIKE the time I spend with her. And she is definitely very child-like. In fact, I call her the child I never wanted. My husband and I decided long ago not to have children and we have no regrets about that. Now, I am relieved not to have children on top of caring for Mom. But I feel uncomfortable about being called a “good daughter” for something as simple as taking Mom to lunch. I do get a Bob Evans meal out of it, after all. That is Mom’s favorite restaurant. Her preferred meal: pot roast hash.

I didn’t start the day planning to take Mom to lunch. I actually thought about slipping away for some Chinese with a coworker. But Mom called me mid-morning. She was a bit agitated. Another resident at her facility was bothering her. A “loud mouth.” But that’s as far as she got. She cannot articulate what bothers her most of the time. I just knew she was out of sorts. So I offered to take her to lunch. Little outings like that give her a bit of pleasure, some company, some sunshine, and a distraction from whatever it is that is irking her.

So am I a good daughter? I suppose I am on some levels. I began this process full of resentment, reminded constantly, whenever Mom needed me, about how little affection and positive parental attention I got from Mom growing up. She was an alcoholic, depressed, worked jobs that didn’t fulfill her, hung out with self-destructive people and, as a result, was absent a lot of the time. She was not mean. She was neglectful. She wasn’t there much. She slept a lot when she was at home. So, when it was dawning on me that she probably had Alzheimer’s and I was going to be stuck as her primary caregiver, I was angry. I am still angry sometimes – for a variety of reasons. But I am never angry at Mom. This is not her fault. She wouldn’t want this. When she is sort of aware of her memory problems, she DOESN’T want this. And I see this now as my opportunity to forgive her. And to take care of her. She also didn’t receive much affection or positive parental attention growing up because both of her parents were alcoholics. She has always needed some hand-holding – which, at times, was quite annoying. But now she just plain needs someone to take care of her. And it might as well be me.

Confusion continues

Mom was expecting me the other night. She was still at dinner when I arrived. I watched her in the dining room, laughing and smiling with one of her friends and a regular at her table. By the time she spotted me, though, she seemed rattled. She gets a pill after dinner, and the nurse had to specifically ask Mom to put the pill in her mouth. We sat in the lobby for a bit and then went to her apartment, where the cat continued to be a confusing presence for her. She also had a pair of cotton underwear in her purse.

That was Thursday. Saturday and Sunday passed peacefully, a long weekend with lots of playoff football to watch.

She called Monday, which was a holiday for me, leaving two phone messages in my office voice mail.
9:28 a.m. “Hello this is B. Um, with E. And uh, let’s see.” (Hangs up.)
9:30 a.m. “Hello this is, uh, B, E’s friend. So, um, I don’t have… I don’t know what I’ll do. Bye.”

I’m pretty sure she needed some underwear – the disposable kind, which she began wearing in August when I realized someone was peeing on the couch in her apartment. I had the cats checked out. The male had what looked like a possible bladder infection and was medicated. Some peeing stopped, but not all of it. The female cat was fine. So I realized, with some horror, that Mom was the one peeing. In the middle of her bed, on her couch cushion, on the ottoman. I also found other evidence, such as pairs of cotton underwear thrown into the trash. She once described one of those pairs as “not working anymore.” Which I thought was sort of funny, and true.

She transitioned pretty easily to disposable underwear. She found them comfortable and didn’t seem to notice that they left some visible lines depending on what she is wearing. Her only problem is proper disposal. I find used underwear in drawers, on her bed, in her closet, and occasionally in the trash can.

So, I took her some new underwear on Monday evening, filling her drawers with a two-week supply. I also taped two pictures of the cat to her apartment door to help her find her home. The receptionists have been helping her find her door for about a week. An aide recommended the pictures. I wonder if they’re still there. Mom called me today at work to report that the cat is misbehaving. This is a fat, old cat who does little more than sleep, eat and poop. She is not a reliable source, but I think she might be carrying him around the assisted living facility to show off her new (but really old) cat to her friends. And that makes him squirm. For now, she has agreed to keep him. But she wants me to report any problems he might be causing…

Spoke too soon

Well, I talked to Mom today after all. She asked the front desk receptionist at her facility to call me for her. That’s a new development – or a new decline, depending on how you look at it. She has been calling me exclusively at my work number for months now, including weekends and evenings. So I check my work messages every Saturday and Sunday and while I am away on vacation. The receptionist said Mom was anxious about all the snow we’ve had here and she wanted to talk to me. I told Mom she is safe in her apartment and she said, “I don’t have an apartment here anymore.” That, too, is new. So I’m stopping there after work to see what’s going on. I have a hunch that when I get there, she’ll be surprised to see me.

Double up

I haven’t talked to Mom today, which is becoming more common. She used to call me almost daily after her move to an assisted living facility in October 2007. Then, the calls became less frequent as she became more comfortable there and developed friendships. Now, she mostly calls to report something, and often something bad – at least bad in her mind. So no news is typically good news. If I don’t hear from her for a few days, I call her to check her mood and just get a feel for how things are going.

I am thinking about her today, though, because it’s about 8 degrees outside, so I hope she’s warm. Her apartment is usually too warm. But she often keeps a window cracked open to provide fresh air for the cat – the cat who has become a mystery to her, even though he has lived with her for three years.

So, I’m wondering how many pairs of pants she is wearing today. I took her to lunch this week, and while we were in the car, she told me she had two pairs of pants on. The bulk around her thighs suggested this was true. When I dropped her off, I wanted to know for sure, so I asked her if she truly had two pairs of pants on. She pulled down the top gray pair of sweatpants to expose the waistband of another pair of cotton gray pants beneath. “I do that sometimes,” she said. The cold weather makes me think it’s a good day for two pairs of pants. But Mom doesn’t really need a reason.

Maybe I should start at the beginning

So, I’ve been my mom’s primary caregiver for more than two years. Why start a blog now?

I have tried to hand-write a journal, but didn’t stick to it. I’m a writer by profession, so it’ s convenient and comfortable to write on a computer. I enjoy reading other blogs, and in many cases, the more personal they are, the more interesting they are.

Also, I took a look around and didn’t many blogs on this subject. Which shocks me. And many are somewhat serious in nature, trying to help newbies to Alzheimer’s find online resources. There is definitely a place for that, and I am grateful those sites exist. But this will not be one of them.

If I am going to help anyone, it will be by exposing the oddities of the Alzheimer’s experience. If I can remember to do so, I am going to transcribe some phone messages my mother leaves me. Even better would be recording our conversations. I have read a lot about this disease – books, listserves, Web sites, brochures, news stories. I am still surprised by my mom’s behavior. I think that’s partly because it is my MOM doing these weird things. But also, everyone’s a little different. All Alzheimer’s patients might be confused and forgetful, but the way that manifests is a very individual experience, I suspect. A peek into my mom’s life might just give others a hint at what they can expect.

And for those who know me, this might explain a thing or two about how I am behaving on any given day.

The cat is out of the bag

I’m not even sure how to interpret what happened here. About two years ago, my mom’s beloved cat died. Suddenly. It was terrible. But my husband came up with a genius solution. We moved our two cats in with Mom so she could have companions, our cats could stop running from our dogs, and my husband could experience some allergy relief (he learned of his cat allergy about 10 years into cat ownership). So for two years, almost, Mom has looked after two cats, fed two cats, scooped litter for two cats, cuddled with two cats, and generally obsessed about the two cats. Just a few weeks ago, we learned the senior kitty had developed oral cancer and we euthanized her. Mom was stressed and sad, but handled it fairly well. She talked about wanting a new cat to keep the remaining cat company. Not going to happen, but I just didn’t say much. So just the other day, I went to visit, and she said: So this cat gets to live with me now? Yes, I said, he’s all settled in, has his food here, his litter box. He feels very much at home. “Oh, good,” she said. A few minutes later, we were walking to the dining room, and Mom stopped at the receptionist’s desk to report: “Guess what? I have a new cat!” She called again to confirm the situation: This laid back cat will live with her from now on, right? Right.

It is as if, to recover from one cat’s death, she wiped the cat slate completely clean. This is one of those cases in which Alzheimer’s is giving my mom a break.