New Diagnostic Guidelines Proposed

The New York Times reported this week that medical experts are proposing changes to the criteria for diagnosing Alzheimer's Disease.  The objective of the changes is to diagnose (and eventually treat) the disease earlier.  You can read the article here.

This is exciting news on several fronts.  The most obvious is that through early diagnosis, the new drugs being developed can reduce or prevent the kind of debilitation experienced by Alzheimer patients currently. 

More subtly, an earlier diagnosis (and therefore communication with patient and family members) will improve the ability of all to cope with the disease.  My experience may not be typical, but I did not receive a clear diagnosis of my mother's illness until she was no longer capable of looking after herself.  During the five years of her gradual decline, this left me struggling with how to provide care for her all alone.  Without the word "Alzheimer" attached to her illness, I didn't know how to access the coping resources that are available.  It may not have been physically easier and I may not have done things differently, but I would have coped much better mentally/emotionally had I known what was happening and what was likely to happen as the disease progressed.

Until these guidelines are adopted, beware when the doctor says "dementia".

First Available Bed

Claiming the "first available bed", is now how the Province of BC manages the intake of patients into publicly funded care institutions.  The system seems to work well, and here is how it worked for us.

Once a case worker assessed my mother as needing placement in a Long Term Care home (see It's all about Definitions for our assessment process), and my mother agreed to move, we were told that she must accept the "first available bed", and move within 48 hours.  Once a bed became available, I would be called to make an appointment to see the facility the next day.  We would make a decision and Mom would move the day after that.   If we decided not to accept the bed in this facility, we would not be considered for placement again for six months.  If we accepted the bed we could request a move to a different facility (of my choice), which we were told could take a couple of years.  I thought I might want to move her closer to me.

At first, this sounded like a harsh system , but I realized that the old system of putting your name on a "waiting list" in preparation for the time when you decided you were ready was too unwieldy for the health care system to manage.  It resulted in beds being left empty when there was a shortage of available beds.

After the assessment, my mother forgot all about her pending move and continued to struggle with the tasks of daily living.  By the time I received the call about an available bed (within two weeks), I was receiving three or four other calls per day from home care workers or neighbours, reporting the latest crisis.  I was a wreck.

I went to see the facility, which turned out to be old and in need of refurbishment, but run by competent and caring staff.  And there seemed to be lots of them, attending to people as they needed help.  I accepted the bed which was in a very small private room with a private bathroom.  I could always move her, right?

As it turns out, I have not moved her.  Of the four homes she was eligible for, (based on her specific condition and needs), the one with the first available bed was the closest to me (only 20 minutes by car).   Moving her again would be hard on her, and I am happy that she is being well cared for.

For more information, I recommend that you read this.

What's in a Word?

I recently finished reading Cost, by Roxana Robinson.  It is a horrific tale of a young man, Jack, and his family, who are torn apart by his heroin addiction.  Most of the book is the story of the family's attempts to help Jack overcome his addiction.

After Jack is evicted from a half-way house for drug use, he returns to the streets.  His mother, Julia, trying desperately to continue a life of her own, lives in constant fear of the telephone and the news that it will one day deliver to her.  Each time it rings she is jarred with a rush of thoughts and the accompanying adrenaline.

As I read this, I remembered my own similar fear of the telephone, which lasted for several years while my mother was living on her own, coping in her own way with dementia.  I lived in a constant state of worry, and the telephone was the device I shared with Julia in her situation.

My mother's psychiatrist, who refused to commit her to a care home, said that this worry was my "problem".  I understood what he meant of course, that it was mine to deal with as best I could.  He separated it from my mother's situation.

As I read these last pages of Cost, however, and the pain that Julia was enduring, I was comforted to learn that my reaction to the situation was probably "normal".  Our lives are all entwined in relationships with those people whom we love and care for.

Don't get fooled into thinking that you have a "problem".  It is more "normal" than you think.

It's All about Definitions

When I began to consider moving my mother from living independently, I was confronted with a barrage of terms used to describe various living situations. In addition, different terms seem to be used by the private sector to describe strictly private (i.e. non government-funded) "communities".

The questions I needed answers to in order to choose a facility included:

• How much care does she need?
• What does it cost?
• Should I be looking at private or publicly funded facilities?
• What options do I have with respect to location? (She and I weren't living in the same Health Care Region.)
• How would her doctor be involved?
• Where do I start???

As I began my research, I realized I needed to understand the terminology being used (Assisted Living, Long Term Care, etc.). Here is an excellent source of information.

I started looking at alternative living arrangements on multiple fronts. (Yes, I was looking at this like a war zone.) My mother's doctor suggested that she be evaluated by a psychiatrist, so I began booking appointments for that. I called the Fraser Health case worker with whom I had been working for several years, and asked to have her living conditions reassessed. At the same time, I began calling private facilities and visited a few that I thought might be appropriate.

For us, the case workers at Fraser Health became the solution to my problem. When they assessed my mom this time, they decided that she needed immediate placement in a long term care facility, as long as she would agree to move.

And as it turned out, "Assisted Living" was not the appropriate level of publicly provided care: the case workers determined that she needs more than 1 1/2 hours of personal assistance each day. So, they have their own definition, and a pretty easy way of determining where a patient should be placed.