Mom has been in assisted living since October 16, 2011. I'll recount the difficult decision to move her into assisted living from our home in another posting. However, I can say that her stay at this assisted living facility, located in La Habra, CA, has been mostly uneventful, except for one visit to the ER for a fever and cough. We've been happy with the supremely patient staff composed primarily of women, that look after mom and the other residents. Mom enjoys the food, the companionship from the other residents and from what I can tell, has adapted well. I visit every Sunday and our routine up to a couple of Sunday's ago involved sitting close to her, holding her hand and listening to music. We listen to Spanish language romantic ballads and rancheras (Mexican country music) on my iPhone. She loves to sing to music from her youth - what is called in Spanish "La Epoca de Oro" (The Golden Age). It always impresses me that as advanced as her disease is at this time, she can still remember the lyrics of many of her favorite songs. Occasionally, we'll walk to the bird enclosure and watch for as long as she is able to enjoy them.
Sunday was a beautiful day. After weeks of weekend rain, we had a warm Sunday, warmer than the previous weekend. I waited til the sun started to peek out of the clouds and I took mom on a slow, forty minute walk, several blocks away from her second home. It was early enough that for the first half hour we really didn't see any cars, which is a good thing because cars upset her when they go by. She was tired when we made it back to the center and was reluctant to enter without some cajoling. I left her seated, waiting for her lunch, content that we had started a heathy habit for our Sunday get togethers.
The day after, on Monday, I picked up a message left the previous evening on my cell voicemail letting me know that mom had hit another resident in the face with a block. The caregiver reassured me in the message that the resident had not been seriously hurt and that all seemed to be ok again. I tried twice to get a hold of the messenger to get more details about the injured resident but at this time, haven't been able to connect. However, this got me thinking about why mom was given blocks in the first place and why certain activities are encouraged in these facilities. Mom's symptoms are not unusual - lots of Alzheimer's patients at her stage act out impulsively when they are upset and lash out with whatever is in their hand (or their empty hand/fist). At home, we learned quickly about the potential that she could hurl an object in our direction so we tried to prevent this as much as possible.
Blocks in the hands of children are excellent learning tools. According to experts and parents, blocks help children learn math, basic geometry and other skills. But why give patients with dementia blocks? I've seen this same play at other facilities and I've also seen that residents are asked to play board games. When I've asked about the reasons why dementia patients would be given these activities I've not received a satisfactory response. Its possible that the caregivers are not informed and are only fulfilling a task but it also seems possible that like many things, that this is just the way its been done.
My mom has an almost constant giggle and laughter that some of her caregivers have noted to be "anxious" in its origin. I agree with them. When we walk together, she doesn't laugh or giggle in that obsessive or anxious way that she does when she is not busy. When she is home with us, and we have her busy sweeping outside or she busies herself plucking flowers or insects, she does not giggle or laugh the same way. At her second home, there are residents that have different obsessive behaviors - scratching a cabinet or the wall, knocking on the wall, pacing. It makes me wonder.
When I was searching for an assisted living for mom, the sites I visited all had locked units for the dementia patients (makes sense) and none of the sites I visited had access to the outdoors. Yes, there might be planned activities once a week or so to go out into the yard for a walk but none of the facilities that I visited had a secured patio, a yard, grass, sky, that was available without a planned activity. The dementia units were usually at an upper floor, or, they were contained to an area without access to a controlled "outside". I have to admit that initially, I found this tremendously reassuring. Our mom had wandered and I wanted her locked up. Secure. I wanted a guarantee that she would not get lost. But now that I've had time to visit, and see her, and the other residents, I do wonder what effect being locked up, without sky, sun or a chill on a regular basis has on a dementia patient. I'm still wondering.
Tuesday, April 24, 2012
Friday, April 20, 2012
The Diagnosis and the Treatment
When my mother and I were told by the neurologist at Kaiser Permanente, at the time her insurance and health care provider, that she had Alzheimer's, I was sitting thigh-to-thigh with her in the small exam room. There was a social worker sitting next to the neurologist and we faced each other.
This had been the appointment that we'd been expecting to have for probably six months, and instead we'd had a number of other tests done for everything from latent syphilis, B-vitamin deficiencies, a brain tumor and probably others I can't recall. I'd tried unsuccessfully to get her to agree to go into the doctor for a good year-and-a-half prior to this day for the memory problems she'd been having and now we were finally here, at the moment of diagnosis.
Moments earlier the doctor had come in, introduced himself, sat down, and questioned her about what city she was in, where she was (hospital, etc), the year, and who the President of the United States was at the time. She couldn't answer these basic questions and he nodded in a way that I think attempted to be reassuring to her because she kept apologizing for not knowing the answers (I think she knew she not getting it right although she also seemed completely unconcerned about the fact she was not getting them right). The doctor, looking at me, said something to the effect of "we've done a number of tests on your mother which have all been negative. Based on her symptoms, we've determined she has Alzheimer's. I'll write her a prescription for Aricept. Any questions?"
I would describe his expression but by the time he got through the sentence I could no longer see him. Tears had spontaneously appeared and I was unsure how to react. I didn't want to cry. For one, I didn't want my mom to be frightened and two, I was completely embarrassed. I'm a woman and crying only seems proper if more people are doing it with you and I really didn't think the doctor and social worker were going to join me.
What do you do when you're parent is given a death sentence? You do what you have been socialized to do. You thank the kind and detached doctor who needs to leave because he has many other patients to see because his employer has only given him 15 minutes or so per patient. The social worker looks at you and gives you her card and she really won't help you when you call her in the future but you nod and thank her for her time because she's been nice and has suggested that she can do more than she can.
Then you are on your own.
You're told to follow up with your primary doctor. My mom's primary has been her doctor for years. My mother loves her doctor. At every visit, my mother hugs her with great affection, just like family. Her primary is competent, but not a neurologist. We see her for years because when we request a second visit with the neurologist, he let's us know in his kind, detached way, that we don't need to do that because there is "nothing he can do". And that is that.
Then you are on your own, again.
Aricept is expensive at the time, but we pay for it and we find out later that it probably had no beneficial effect on her at. Over some time we ask to quit the drug because we think she is either 1) getting no benefit or 2) she's having side effects. We are given another drug, Namenda. She takes that easily two years and we find out later that she took it probably 1 1/2 years longer than she needed to since the studies suggest that if there is a benefit, its only in a very small number of people and only for about six months.
I research drugs for her symptoms and take the journal articles to her primary doctor to support my requests for medication changes. Sometimes it works. The doctor is always gracious and appreciative of the articles. I don't know if she has time to read them - as she has a full case load of people to see, adults and children, and a myriad of illnesses to learn about.
I create alerts on Google, search Pub Med, and read as much as I can about the various theories on the causes and potential treatments. Months turn to years and the studies seem more robust except they are all still primarily in mice. Not a big help to my mom. or us.
This had been the appointment that we'd been expecting to have for probably six months, and instead we'd had a number of other tests done for everything from latent syphilis, B-vitamin deficiencies, a brain tumor and probably others I can't recall. I'd tried unsuccessfully to get her to agree to go into the doctor for a good year-and-a-half prior to this day for the memory problems she'd been having and now we were finally here, at the moment of diagnosis.
Moments earlier the doctor had come in, introduced himself, sat down, and questioned her about what city she was in, where she was (hospital, etc), the year, and who the President of the United States was at the time. She couldn't answer these basic questions and he nodded in a way that I think attempted to be reassuring to her because she kept apologizing for not knowing the answers (I think she knew she not getting it right although she also seemed completely unconcerned about the fact she was not getting them right). The doctor, looking at me, said something to the effect of "we've done a number of tests on your mother which have all been negative. Based on her symptoms, we've determined she has Alzheimer's. I'll write her a prescription for Aricept. Any questions?"
I would describe his expression but by the time he got through the sentence I could no longer see him. Tears had spontaneously appeared and I was unsure how to react. I didn't want to cry. For one, I didn't want my mom to be frightened and two, I was completely embarrassed. I'm a woman and crying only seems proper if more people are doing it with you and I really didn't think the doctor and social worker were going to join me.
What do you do when you're parent is given a death sentence? You do what you have been socialized to do. You thank the kind and detached doctor who needs to leave because he has many other patients to see because his employer has only given him 15 minutes or so per patient. The social worker looks at you and gives you her card and she really won't help you when you call her in the future but you nod and thank her for her time because she's been nice and has suggested that she can do more than she can.
Then you are on your own.
You're told to follow up with your primary doctor. My mom's primary has been her doctor for years. My mother loves her doctor. At every visit, my mother hugs her with great affection, just like family. Her primary is competent, but not a neurologist. We see her for years because when we request a second visit with the neurologist, he let's us know in his kind, detached way, that we don't need to do that because there is "nothing he can do". And that is that.
Then you are on your own, again.
Aricept is expensive at the time, but we pay for it and we find out later that it probably had no beneficial effect on her at. Over some time we ask to quit the drug because we think she is either 1) getting no benefit or 2) she's having side effects. We are given another drug, Namenda. She takes that easily two years and we find out later that she took it probably 1 1/2 years longer than she needed to since the studies suggest that if there is a benefit, its only in a very small number of people and only for about six months.
I research drugs for her symptoms and take the journal articles to her primary doctor to support my requests for medication changes. Sometimes it works. The doctor is always gracious and appreciative of the articles. I don't know if she has time to read them - as she has a full case load of people to see, adults and children, and a myriad of illnesses to learn about.
I create alerts on Google, search Pub Med, and read as much as I can about the various theories on the causes and potential treatments. Months turn to years and the studies seem more robust except they are all still primarily in mice. Not a big help to my mom. or us.
Monday, April 16, 2012
A victim of Alzheimer's
My interest in Alzheimer's and dementia started in earnest about seven to eight years ago, when mom was diagnosed. However, the earliest changes to her personality that I can recall occurred (or were noticeable to me) about ten years ago. At that time, my mother acted normally most all the time, however, occasionally there were outbursts that were unusual for her; accusations for things that did not occur or for things that she'd agreed to but then forgotten about. At the time, these were very subtle signs to us, her children, the uninitiated to dementia or Alzheimer's. As a symptom of Alzheimer's this early sign was not a shout or a scream, instead, it was a confusing message in a whisper of the pain that was to
come.
Ten years ago seems like so long ago. At that time, moms' routine was the same as it had been for years, probably since 1960 when she married my dad. My mother would get up every morning around 6:30 or so, and was out in her garden by 7 am. She clipped, pruned and tended to her beloved roses for hours. She swept the sidewalk, picking up assorted and empty junk food wrappers and soda bottles left by schoolchildren on their way to school and some inconsiderate adults. Mom did laundry every other day, and hung the clothes out on the line because the sun "disinfects" the clothes and nothing makes the whites "whiter" than the sun. She took advantage of every clear and sunny day, and only stayed away from her garden due to rain, which in Southern California is not too often. On the weekends, if we were not up by 7 or so, she'd come in the house, march straight into my brothers room (and then mine) and shout out the wonders of the morning. "Get up!" she'd shout in Spanish (levantense!), "You're wasting the day! Its beautiful outside!" All this and it was only 7:30 am.
I was the luckiest girl in my school. All my friends agreed that my mother made the most incredible flour tortillas they'd ever tasted. They knew about mom's tortillas because a few of them had been lucky enough to be invited by yours truly for lunch break (our school was only a couple of blocks away and no one worried about kidnappings back then). We'd have lunch and play tether ball until the bell rang and we had to return to school.
Every morning, dad would get up at 5 am. My dad insisted on making his own coffee and he used a coffee pot that he felt was "special" in its ability to brew coffee. Dad felt that most people made coffee too"light". I've heard that people made coffee "light"(with few grounds) because it was a left-over habit from WWII, when coffee was rationed. I'm guessing this went on long enough that folks forgot how to make coffee. Anyway, dad would bring her a cup of coffee every morning- a sweet way to ease her transition into a chilly morning. She'd get up and start making the dough for the delicate, delicious and buttery tortillas that would greet us at the breakfast table along with cinnamon and vanilla oatmeal (more dessert than breakfast, but that was OK with me). It's incredible to me now, but the tortillas were fresh at every meal - breakfast, dinner and lunch (if we were home). Its hard to imagine anyone doing that now but she made them every day for every meal until her children grew up and she retired the habit. This was not unusual to my mom, lots of Mexican mom's in our area did this and so did her sisters. She just did it better than everyone. Even the neighbor kids thought so - just ask Becky. On Easter weekend we were talking over the fence and she reminded me about the fond memories she had of coming over our house, knocking on the door and asking mom for a fresh tortilla with butter (wrapped in a paper towel if we had it!). The heavenly smell of fresh tortillas would waft to the neighbors and the kids couldn't resist.
These memories, recalled in the context of her illness, are devastating for me to write. But I feel compelled to do it because my mom was a wonderful mother, wife, sister and so much more. When I visit her at the assisted living, and I see her kind caregivers change her diaper, wipe her face and hands, I want to have a magic machine that can instantly communicate to them all that she was before this horrible disease took her away from us and from everything she loved to do and be in her life. I want them to know her as I knew her. As my brother knew her. As her family loved her. She was strong, courageous, kind and so talented.
I'll get through this because mom deserves to have her story told and because there are many other mother's and father's and brothers out there who also deserve more than what's happened to them. I also need to do this because as a society, we are woefully unprepared for Alzheimer's. As a family we have had many experiences that I need to share with you so that if this terrible illness should befall your family, hopefully you are better prepared than we were. We need to speak for the victims, their families and demand better care, compassion and support.
come.
Ten years ago seems like so long ago. At that time, moms' routine was the same as it had been for years, probably since 1960 when she married my dad. My mother would get up every morning around 6:30 or so, and was out in her garden by 7 am. She clipped, pruned and tended to her beloved roses for hours. She swept the sidewalk, picking up assorted and empty junk food wrappers and soda bottles left by schoolchildren on their way to school and some inconsiderate adults. Mom did laundry every other day, and hung the clothes out on the line because the sun "disinfects" the clothes and nothing makes the whites "whiter" than the sun. She took advantage of every clear and sunny day, and only stayed away from her garden due to rain, which in Southern California is not too often. On the weekends, if we were not up by 7 or so, she'd come in the house, march straight into my brothers room (and then mine) and shout out the wonders of the morning. "Get up!" she'd shout in Spanish (levantense!), "You're wasting the day! Its beautiful outside!" All this and it was only 7:30 am.
I was the luckiest girl in my school. All my friends agreed that my mother made the most incredible flour tortillas they'd ever tasted. They knew about mom's tortillas because a few of them had been lucky enough to be invited by yours truly for lunch break (our school was only a couple of blocks away and no one worried about kidnappings back then). We'd have lunch and play tether ball until the bell rang and we had to return to school.
Every morning, dad would get up at 5 am. My dad insisted on making his own coffee and he used a coffee pot that he felt was "special" in its ability to brew coffee. Dad felt that most people made coffee too"light". I've heard that people made coffee "light"(with few grounds) because it was a left-over habit from WWII, when coffee was rationed. I'm guessing this went on long enough that folks forgot how to make coffee. Anyway, dad would bring her a cup of coffee every morning- a sweet way to ease her transition into a chilly morning. She'd get up and start making the dough for the delicate, delicious and buttery tortillas that would greet us at the breakfast table along with cinnamon and vanilla oatmeal (more dessert than breakfast, but that was OK with me). It's incredible to me now, but the tortillas were fresh at every meal - breakfast, dinner and lunch (if we were home). Its hard to imagine anyone doing that now but she made them every day for every meal until her children grew up and she retired the habit. This was not unusual to my mom, lots of Mexican mom's in our area did this and so did her sisters. She just did it better than everyone. Even the neighbor kids thought so - just ask Becky. On Easter weekend we were talking over the fence and she reminded me about the fond memories she had of coming over our house, knocking on the door and asking mom for a fresh tortilla with butter (wrapped in a paper towel if we had it!). The heavenly smell of fresh tortillas would waft to the neighbors and the kids couldn't resist.
These memories, recalled in the context of her illness, are devastating for me to write. But I feel compelled to do it because my mom was a wonderful mother, wife, sister and so much more. When I visit her at the assisted living, and I see her kind caregivers change her diaper, wipe her face and hands, I want to have a magic machine that can instantly communicate to them all that she was before this horrible disease took her away from us and from everything she loved to do and be in her life. I want them to know her as I knew her. As my brother knew her. As her family loved her. She was strong, courageous, kind and so talented.
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| Mom and I at her assisted living in La Habra, CA |
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