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.