Archive | February 2014

A brief reflection on grief

In the summer of 2010 I stood with my sister beside our father’s headstone in a small town cemetery. More than two years had elapsed since his death, but this was the first time either of us had visited the grave where his ashes were interred.

“Do you still think about him every day?” my sister asked me.

I replied honestly that the sudden death of my husband just a few months before had eclipsed any grief I still felt about Dad.

After a moment’s thoughtful silence, my sister said “I guess the woman who still has her husband has the luxury of mourning her father.”

Monday will mark four years since my husband took his life. I’ve been so busy taking care of Mom, it snuck up on me. I’ve hardly had a moment to stop and reflect on this anniversary. In some ways, maybe that’s a blessing. On the other hand, I guess a woman who was not  taking care of an elderly parent would have the luxury of still mourning her husband.

A New Diagnosis

Mom finally saw the neurologist today. When I told her about the appointment last night, she asked “What’s the purpose for seeing this new doctor?” I didn’t want to talk about dementia, so I said the first thing that came to mind – that her regular doctor was concerned about her balance issues, as evidenced by the recent falls, and had referred her to a neurologist. I hoped I wouldn’t look like a liar when her falls weren’t the focus of the doctor visit, but I figured she probably wouldn’t remember by then anyway.

It was a long appointment for an office visit, but Mom was a trooper. First the nurse gave her one of those mini memory tests, where they ask basic questions like “what day of the week is it?” and “what year is it?” and “do you know what state you are in?” and then ask you to write a sentence and draw a diagram. She ACED that test in December, getting only one question wrong. I was slightly concerned that if she did too well on it this time, they would dismiss my concerns about her dementia. I needn’t have worried. She flunked this one good and proper. She thought she was in Arizona but couldn’t name the city, had no idea what day of the week or year it was, but was fairly confident that today was sometime in November. For the writing sample, the nurse told her to write a sentence – any sentence you want. I jokingly asked if anyone had ever written “This test is stupid” as their sentence. The nurse chuckled and said no, not that she could recall. When she collected the test paper from my mom, the nurse read her sentence out loud: “This is fun.”

Then a young man whose name tag identified him as Sam, a medical student from USC, came in and asked Mom several of the same questions. This time she answered that the month “must be July” and gave the year as 2018. Interestingly, though, she knew that it was winter – less than a minute after saying that it must be July. Both of those are understandable, I think, considering that this is her first Southern California winter and it was 80 degrees today. But where the hell did 2018 come from? Sam the med student also did some tests of reflexes and muscle strength (“You’re strong!” he told her with a grin), asked me a bunch of questions about her medical history, and had her walk across the exam room and back without her walker, noting her shuffling gait. I liked Sam. He was friendly and kind, listened attentively, and had taken time to read the notes I’d faxed over the day before documenting her symptoms and their progression over the last year.

Finally, Dr. O, the neurologist, came in. She started off with some of the same basic questions. Mom again gave the year as 2018, thought she was in a hospital (not a doctor’s office), but this time she correctly identified the current month as February. Dr. O asked her “What kind of doctor do you think I am? Am I a heart doctor? A foot doctor? Or what kind?” Mom looked thoughtful and answered “I don’t know, but I know I don’t need a heart doctor.” I think I saw Sam the med student smile at that, and it was all I could do not to laugh, considering that we’d just had a five-minute discussion about her heart conditions and medications.

And here’s the irony: her falls and balance issues did turn out to be one of the focuses of the visit. After observing her shuffling walk and the slight tremors of her hands (which is a brand new symptom I’ve only noticed in the last couple of weeks) and hearing about her falls, the doctor’s preliminary diagnosis (pending CT scan) was age-related Parkinsonism. My mom’s younger brother, my uncle Tom, had Parkinson’s Disease. Dominic at her assisted living community also has it. Parkinsonism, Dr. O explained to me, is not the same thing as Parkinson’s Disease but it has some of the same symptoms including gait and balance issues, postural instability and tremors. Memory loss and disorientation can accompany it, but Dr. O said those symptoms usually show up much later than the physical symptoms. Since Mom’s memory issues started at least a couple years before we noticed any of the Parkinsonism symptoms, she suspects there is another neurological disease (she turned away from Mom and mouthed “dementia” to me) at work here. I guess the CT scan will help identify what kind of dementia. The “A” word (Alzheimer’s) was never mentioned.

We left with orders for blood work and a CT scan and two prescriptions – something commonly prescribed for Parkinson’s patients to help the balance issues and Namenda, commonly prescribed to Alzheimer’s patients for memory loss. Dr. O wants to see her again in two months, which seems to me a long time to wait to go over the results of the CT scan and blood work. But I’m hoping, between the new meds and the physical therapy that is supposed to start this week, that we’ll be able to report some improvement in her mobility by then.

As a reward for being such a good sport about the 90-minute doctor visit, I took Mom out to dinner and we shared some warm apple pie a la mode for dessert.

Not Much to Her Life?

She has fallen twice this week, once in her room and then yesterday in the dining room. Because a urinary tract infection is one of many things that can cause muscle weakness, I bought some UTI home test strips at the drugstore and took them over to her first thing this morning, before I went to work. She was in bed, of course, but I don’t think she had been sleeping. I sat beside her and held her hand. When I leaned over to kiss her on the forehead, she stroked my hair with shaking fingers.

“I’m lucky to have you,” she said. “There wouldn’t be much to my life if you weren’t in it.”

I hate that it’s come to that. I hate that I had to take her away from her life – her friends, her church, her community – in Arizona and bring her to a place where she has nothing but me. I hate that she seems content to doze through the hours between my visits, showing little interest in meals or activities or anything.

People tell me it’s not my job to make her happy; my job is to keep her safe and ensure she gets good food and appropriate medical care. But when it was her job to take care of me, she did so much more than that. My father provided the comfortable home in a good school district, the medical care, the food on the table… and Mom provided the TLC. She held my hair when I was sick and let me crawl in bed with her when I’d had a bad dream. When I was too shy to join Girl Scouts, she became a troop leader to encourage me. She instilled in me a love of books and music – reading to me every night, teaching me the old songs that she sang with my aunts and uncles around the campfire. My childhood is full of happy memories and my mom is at the heart of most of them.

I don’t know how much time she has left in this world, but I don’t want her dozing it all away, just placidly waiting for the sun to go down. I want it to be filled with happy moments, even when I’m busy elsewhere and can’t be with her, even though she won’t remember those moments later. I just don’t know how to make that happen.

A Caretaking Life

I’ve been a caretaker pretty much my whole life. Even in elementary school I was the one who fussed over my friends and tried to take care of them. (I blame my parents for not giving me the baby sister I kept asking for. LOL) I spent my twenties and early thirties taking care of a partner who had significant undiagnosed mental illness, and who progressed from occasional depressive episodes to delusions and agoraphobia so bad that I had to handle everything that involved dealing with the outside world, even by telephone. I stayed in that relationship until it was almost literally killing me, finally escaping (despite my partner’s threats of suicide) in my mid-thirties.

After a couple years being single, half of which was spent taking care of a roommate with substance abuse issues, I met the man who would become my husband. He was smart and funny and passionate and insanely talented – and bipolar. He was managing it pretty well with medication for the first year or so that we were dating, but as time went on he couldn’t keep it together and I stepped in as the caretaker. Again. He lost two jobs in a row because of his depressive episodes, and I ended up supporting both of us. Again. He had two suicidal episodes that I know of in the six years we were together, before completing suicide in March of 2010.

We were passionately in love and he was my best friend. I thought my life was over when he died. I was finally healing from that loss and just starting to be able to appreciate the freedom of not having to take care of anyone but myself, for the first time in my adult life… when it became obvious that my mom needed me to take care of her.

At first, I’ll admit, I resented that. I wondered, when will it be my turn to take care of me? Is living my OWN life and not the life of a caretaker really too much to ask? I tried to arrange things so that my mom would be safe and well cared for without intruding too much on my daily life. I was afraid of becoming Laura Linney’s character in “Love Actually,” who lets responsibility for her disabled brother keep her from having even one romantic encounter, much less an actual relationship.

Over time I came to realize that I worried about her and felt responsible for her well being no matter what I did. Over time my attitude shifted and I stopped carefully guarding my free evenings and limiting the time I spent with her. I stopped worrying about when I would find time to date or write my memoir. I surrendered to being her caregiver.

During the last few months, when I feel anxious or frustrated about the level of care she’s receiving, I’ve often found myself contemplating having my mom live with me. I’ve discussed it with my therapist and also with acquaintances who have experience being 24/7 caregivers for their parents, and everyone agrees it would be a bad idea for me to take that on. My therapist went so far as to joke that she would lie down in front of my car to stop me. I know they’re right. I can come up with a dozen reasons just off the top of my head why it wouldn’t work out well to have my mom live with me. Why, then, does it sometimes sound so appealing, so right?

I had an “ah ha” moment today. This business of being responsible for someone as vulnerable as my mother is now, it’s scary. And I think it’s human nature in a scary situation to gravitate toward what feels familiar. The caretaker role is a comfortable and familiar one for me. I’ve been practicing it all my life. It would be easy for me to fall back into that role as my primary identity. Easier than learning how to advocate for her care in a facility, as I’ve never been good at confrontations. Easier than delving into the painful loss of my husband for my memoir. Easier, let’s just admit it, to let my mom be the excuse for why I don’t date than to risk my heart again.

In reality, of course, there would be nothing easy about living with my mother and being responsible 24/7 for her care, especially as her dementia progresses. I would most likely grow resentful and it would poison the close and loving relationship we have. I owe it to both of us to make a different choice – to choose, for the first time in my life, to give my needs equal priority with the responsibilities of caretaking. The real challenge here is to maintain that balance so that both of us can be as healthy and happy as possible.

Planning Ahead

After the incident at the doctor’s office last week, I decided that I need to be proactive and start looking for a living situation that will meet Mom’s needs in the long term — before we have an incident that forces the issue. I would like to get her into a community that specializes in dementia care. I toured one such community after work today.

I saw a lot of things I liked about it: the spacious dining room with high, sloping ceilings and plenty of room for walkers and wheelchairs to maneuver between the tables; the large TV lounge; the quiet, tree-lined street on which it sits; everything on one floor, so no elevator causing a traffic jam at meal times. The activities are more in line with her interests, including a weekly Scrabble game and Bible study, and they have an actual Activity Director. The residents, nearly all of whom have some degree of dementia, all seemed friendly and engaged. Though it was after dinner, lots of folks were up and about in the hallways. Lots of the rooms had sliding doors opening onto a central courtyard.

On the flip side, the rooms are significantly smaller than her current one. She’d have to get used to a twin bed (instead of full size) and could only keep about half of her furniture. And because it’s specialized care, it costs more: a minimum of $600/mo. more than she’s paying right now, which puts it at $300 (or so) more than her total monthly income. A shared room would cost the same as what she’s paying now, but the shared rooms aren’t noticeably larger than the private ones — so she’d be down to just a bed, a dresser and (if she’s lucky) one chair. While she’d enjoy the company of a roommate in a larger space, I can’t see her living like a college student in a dorm with no privacy whatsoever.

I have a good feeling about this place. Maybe by the time she needs to move, I’ll be able to figure out how to pay for it. I could get a roommate, so that the money I save on my rent can go toward Mom’s extra expenses. (Is it completely ludicrous to be contemplating getting a roommate myself so that my mom doesn’t have to have one? But at least MY roommate situation would include a private bedroom and bathroom.) Or maybe there’s something better out there. I’m going to keep looking.

Meanwhile, when I called her tonight, she seemed so “with it” that it made me doubt whether she really needs to be in memory care just yet. Hopefully we’ve got a little time, a nice comfortable plateau to settle in on before the next decline.