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.

Who's In Charge Here?

One of the most intense emotional struggles I have ever been through was with myself and my mother over her independence. Mom is a very independent person by nature; she is not only unlikely to accept help from other people, but she is also a person who prefers her own company. She has never had many friends and does not like to join groups.

As my mother aged and gave up driving, she began to rely on me to take her to her many medical appointments. It is the only thing she would ask for, and not only did she appreciate the ride, but she let me manage her myriad of prescriptions and doctor's appointments for her many chronic conditions.

Over the last five years, I would try to get her to accept help from various sources, all to no avail. "No, I don't think so", she would say, turning up her nose at me. When I talked to her about moving into a private Assisted Living environment, closer to me, I got a firm "I don't want to move."

The intense emotional struggle over who was in charge was largely with myself. It seemed impossible for me to insist with any authority that my mother accept unwanted help or change living arrangements. She was my mother, right? As well as her being in charge for so many years, I also struggled with her right to make decisions that affected her life. As her psychiatrist pointed out to me, as recently as one month before her move to Long Term Care, I was just going to have to learn not to worry.

Over time, my health and well-being began to suffer with the stress of being my mother's sole source of support. I became desperate to get others involved in her care and latterly knew that she was not safe living alone. I was a 40 minute drive from her condominium.

I reached a point where I knew I was going to have to exercise my authority and insist that she get some additional help - if only for my sake.  It was time I accepted that Mom was demented, and just as I would not permit a three year old to make decisions regarding her care, I could no longer allow her this power.  She was incapable of making sound judgements.  (For excellent reading on this, check out Your Name Is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's by Lela Knox Shanks.)

Power of Attorney

As you begin to take responsibility for more areas of an Alzheimer patient's life, you will require the appropriate legal authority.  This is done through a Power of Attorney, and should be arranged early on, while the patient is still capable of assigning the authority to you.  Contact a lawyer or a Notary Public to help you with this.

Home Health (I Need Help!)

Whether you are caring for an Alzheimer patient at home or whether the patient lives independently, there will come a time when you will need help.  Sometimes, this need will manifest itself in your life with the desperate realization that you need a vacation or you are suffering symptoms of burn out.

My advice?  Don't wait that long.

If you contact your local health authority, they can put you in touch with "Home Health"  which will offer some of the following support services:

Personal Care Needs such as bathing and washing, dressing, grooming, taking medication, and meal preparations.  (Note that this list does not include running errands or housecleaning).

Respite, which is a place that the patient can go and stay for awhile while you go on vacation or take a much needed break.

Information about other support services available in your community.  There is a vast network of health authority and not for profit organizations providing services such as:

• Shop by Phone - volunteers will help patients complete a grocery shopping list.   A local grocery store participates in the program and delivers the groceries.
• Meals on Wheels
• Volunteer Visitors and Phone Calls
• Day Programs where your loved one can go for a few hours during the day.
• Various social activities such as lunch and other outings.
• Transportation options such as HandyDART

You can find your local health authority by calling your provincial government, or using the Internet:  http://www.health.gov.bc.ca/socsec/contacts.html.  Make sure that you contact the local health authority where the patient resides.

Your health authority will assign you a Home Health professional (Case Manager).  She/he will visit you or the patient in the home and assess what government services the patient is eligible for and how much they will cost him/her.   Your Case Manager will also provide you with contact information to access the services offered by other organizations.

Keep in touch with your Case Manager as your needs change.  They will make frequent house visits to reassess changing circumstances. 

Don't be shy or try to do it all by yourself - ask for help!  Finding out what services are available before you find yourself in an emergency situation is always less stressful.