May to September. Observations on slow decline and a symposium

I haven't blogged since May and I figured it's time I get back to writing.

In May, mom was still in La Habra at Whitten Heights Assisted Living (AL).  My brother and I just moved her to a new facility that is closer to us, but more on that later.

I signed up for an Alzheimer's symposium held in June at the University of Southern California (USC)
This symposium was not for caregivers, it was a professional symposium. I've been to caregiver conference's in the past, but I wanted to hear discussions that were based on published research, even if some of it would go over my head. When I think of the caregiver conferences that I've previously attended, the speakers focused on what I would call "feel good" topics - the importance of exercise, relieving stress, eating well, awarding or recognizing specific "exceptional" caregivers, etc. However, I'm aware that a number of caregivers are interested in hearing and learning more about the medical research, so hence my attendance at this talk.

Based on the title of the conference "Vascular Cognitive Impairment and Dementia" I guessed that the focus would be on hypertension and heart, and that research would be discussed that associated vascular disease with a risk for dementia/Alzheimer's.

The symposium was sponsored by the USC's Memory and Aging Center, as well as the Alzheimer's Association, University of California, Irvine, University of California, Los Angeles and University of California, San Diego. I learned that USC is part of a collaborative between the University of CA, Irvine and the University of CA, Los Angeles to research and share data about the disease. This collaborative is part of a larger State of California Alzheimer's Disease Program to fund research.

I was happy to be in attendance and very pleased to meet a couple of family practice physicians who like me, came to USC to learn more about the state of the science for their own - and their patients - benefit. These family practice doctors did not specialize in neurology, but had a desire to serve their patients better. They expressed their surprise that I'd be attending as a caregiver! One of the doctor's asked me lots of questions about basic caregiving tips, how we (my brother and I) dealt with stress, how we accessed information, etc.

I was thinking that it would be wonderful if there was a symposium to address the types of issues that family practice doctor's have to deal with. After all, not every person with Alzheimer's has a gerontologist or neurologist that they see on a regular basis and many are served instead by family practice doctors who may, or may not know, the latest treatment recommendations. I wrote about this issue in an earlier post.

My dad died 20 years ago this year, and while we don't go to visit him at the cemetery every month as we did the first few years, we still manage to visit every holiday. It is such a peaceful and beautiful location, with ducks and geese and other birds drinking and grooming in the lake. For Father's Day, and his death anniversary in July, we picked up mom and made an afternoon of it, cleaning his plot, walking around the park and finished it off with a trip to one of our favorite places, Baskin-Robbins for ice cream. Mom doesn't remember dad but she enjoyed being in the outdoors. She becomes frustrated by photos of people, in any form, because she thinks that they are alive and are looking at her, so the  picture of the couple buried next to him was very upsetting to her. We've become numb, or less sensitive to her angry outbursts about the people "looking at her" whether they are on the side of a bus, on a billboard, on a photo on the wall or a burial marker. Usually, we try to redirect her attention but if we can't, sometimes we have to just let her be angry and get on with what we are doing.

Mother's Day 2012

A couple of months ago, a friend of mine shared with me information about an assisted living in Pasadena. Unfortunately, her mother is also suffering from dementia, and she had researched several locations before deciding on this particular spot. She suggested that I call them and see if they took private pay. The hope that mom could be so much closer to us than her location in La Habra, 26 miles from us (which in Los Angeles County, with our traffic, might as well be in another State), made me feel really good.

At this point you may be wondering why my mom was in a AL 26 miles from us, and why didn't I place mom at this location to begin with? Great question.

When I started researching AL's in Southern California in 2010/2011, I used the internet, I called 211 directory in Los Angeles, I called two nationally known AL finders for seniors, and the caregiver case management agency that was helping us, and others, looking for a complete list of all AL's in my area. There was no such list. No agency at the State level, County level or other public entity had a list of this type or could share one with me. If I found a location that I wanted to screen for complaints or violations, the State agencies could help me with this, but couldn't help me with a complete list of AL's. The most helpful groups were the national AL finders however, I found out later that these agencies refer the caregivers only to those AL's that are registered with them. These agencies require a fee or payment of some type for AL's to be listed with them, and the smaller AL's can't, or won't, pay the fee's to be listed with this type of AL referral source.

I'm grateful for the help that we received in locating an AL in La Habra at a time when we were in critical need. We couldn't hire a personal attendant/caregiver - the monthly cost was higher than AL. No family could step in and care for her, my brother and I certainly couldn't quit our jobs and care for her full time, and we were terrified that she'd wander again. Plus, she was becoming too difficult for her adult day care to manage, having crying episodes, and running out to the street on one occasion.

I don't know at this point how many AL's are licensed in California. However, with so many adult needing AL and dementia care, why has no one at the State thought to do the minimal - and help caregivers by compiling and providing a free, updated, AL list? It's very frustrating that at a time when we can find friends on Facebook that we haven't seen in 20 years, or post questions to the President of the U.S. in a live chat, caregivers can't count on some basic tools to help them do the best for their family and loved one's.

The good news is that this step in our journey has a happy ending. We did get her admitted, she started on September 1, and she is living in an AL that has only dementia patients, at various stages of their disease.  Something that I am thrilled about - and that I really wanted for her - she can walk outside (!) whenever she'd like to. There is a patio with plenty of seating, artificial waterfalls and fountains, and birds in cages (this seems to be semi- requisite as every AL I've visited has birds in cages).  There is plenty of space for her to walk and either be alone, or with other folks. Finally, this move has meant that we can see her more often, which helps our entire family, I think, at some level.

Mom at her new facility in Pasadena, with her baby doll, and her hair cut (courtesy of my very patient brother, and the Flowbee. 
P.S. A word about the Flowbee - and no, I don't work for them or get any commission from endorsing the product, which I enthusiastically do.
Mom won't allow anyone to cut her hair and its been this way for some time (this includes the salon inside the AL). We were at a loss as to what to do because her hair was growing out and looking unkempt and the caregivers were asking if we could do something about it. I told my brother about the Flowbee, he purchased it on Amazon, we watched a couple of You Tube videos' and he - a nerdy guy, with no particular hair cutting technique - cut her hair fabulously (!) the very first time. The picture above is from her second cut with the Flowbee in September. Maybe this will work for your family? just make sure and get the person used to the sound first and then try it! Might require a couple of tries but it worked for us.

Mother's Day

Happy Mother's Day Mom.

You don't remember anymore but when I was about 8, dad took me to the store to buy you a gift for Mother's Day and I selected what had to be the ugliest cross ever created. It was dark green, very shiny, and heavy on the fake gold. I remember it had some large stone in the middle, where the bars intersected. When I picked it out, I recall being impressed with its size and weight, the heavy gold chain in my small hand. I'm sure dad tried to steer me away from this cross but I clearly won that argument.  I remember that I couldn't wait for you to see it. Dad and I brought it home, wrapped it up and gave it to you. I don't remember what happened when you opened it, but I remember you wearing it all day, and telling me how much you appreciated my gift.

I think about that day often and about the many lessons that you taught me. That day, you showed me how important it was to be grateful for the thoughtfulness behind a gift. You taught me that it is more important to love the giver, than the gift. You showed me that you valued that I had spent time selecting this especially for you. You wore the cross all day, showing me how important it was to demonstrate gratefulness. You probably had hopes for something else, maybe even something practical- but you never let a disappointed sigh, hint or word cross your lips. In fact, you never got rid of the cross - I remember seeing it fairly recently. You held onto it, much later than you needed to. Even when I became an adult, and tried to dismiss the ugliness of it, you continued to refer to it with great affection.

Thank you mom, for the lessons of that day and the many that came later. I hope our gifts to you in the years between have shown you how truly grateful we are to you.

A nice visit with mom

Sunday was a beautiful day again in Southern California. It was glorious, sunny, the kind of day my mom would have taken full advantage of had she not developed Alzheimer's. If not for Alzheimer's, mom would be 1) gardening, pruning her roses, tending to her fig trees, and the hibiscus or 2) sweeping the sidewalk and stopping to talk to passersby or 3) all of the previous.

I drive to the facility, get out of the car and tilt my face straight up into the beautiful blue sky. It'll be a nice day to be out with mom. She is getting additional visitors today.

I go to mom's floor, enter the secret code and walk over to her as she is finishing breakfast. I wait for her to finish and she pays no notice. I approach her, and we begin our usual greeting. I look at her eyes, smile at her and say "Hi, mom". Today I say "Hi, mom". Sometimes I say "Hi Gomez". Gomez was her maiden name and before she became really sick, I used to call her Gomez instead of mom. Since she's been sick, its been harder for me to say that and go there again.

Mom smiles at me, reaches for my hand and kisses it. She does that a lot lately. She asks me where I've been; when did I get here? I tell her that I was home and at work. She tells me that I'm beautiful and it breaks my heart. I am holding her hand and I am struck by how small it is. So frail in mine. Why am I noticing this again? its like this every week. Maybe I've got it too now.

I tell her to get up, and I kind of have to pull at her hand and arm a little to get her going. I tell her she is having company today. My uncle, a couple of aunts and my dear cousin Ed are coming to visit. She smiles and is unaware of who they are but she is happy to go with me. I am so glad she goes with me pretty much wherever I ask.

It's my mom's brother, his wife and mom's sister, and I really appreciate that they take the time every four to six weeks or so to come and visit, driving 60 plus miles one way to stay three hours with mom. Mom doesn't know who they are, but she seems to be happy that they are visiting and is fine as long as she doesn't get memory quizzes. Sometimes its hard for family and friends to understand that a person doesn't remember anything about their previous life, the one before Alzheimer's. Its difficult to resist the urge to say "who am I?" or "do you remember father? what do you remember? do you remember home?" Mom gets annoyed by questions and she lets you know it.

I open the music on my iPhone, set it to her favorite male singer (Pedro Infante) and give it to her. I have to keep resetting it because she forgets to hold it to her ear and she touches the buttons and ends up with Johnny Cash or nothing at all. What's funny is that when she gets no music, sometimes she continues to sing for a while. I wonder how she does that when so many other things are beyond her.

Talking with the relatives seems to push the clock forward at a faster pace. Noon comes and we start our goodbyes. It'll be time for mom's lunch soon and time for us to leave her.

It was a good day Sunday.

Playing with blocks

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.

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.

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.

Mom and I at her assisted living in La Habra, CA

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.