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.

A Port in a Storm

A benefit of getting a clear diagnosis for any disease is that you can use the Internet to educate yourself and to reach out to people who are experiencing similar things as you.  You are not alone.

One of the things I hope to do on this blog is to share useful links.  I'll keep adding to the "Useful Links" section, and write a bit about them when I find them.

Here are a few that I have discovered already:

Peace of Mind - Caring for Seniors at Home  I found this during last December's horrific snowstorm when I was trying to find a way to get groceries to my mother, who was living alone. 

Peace of Mind has information about and links to Community Services, Caregiving, Housing, Transportation, and lots more.  Bookmark this site, particularly if you live in the Lower Mainland of BC.

Alzheimer Society of BC  Lots of good information and local links here.

Alzheimer Society of Canada  More great links, information, and links to the other Societies across Canada.  One of the things they sponsor is a very active Message Board, where you can chat and exchange information with other people who are going through the same thing you are.   The personal experience here can be very useful, and as Diane from Peace of Mind (above) says, "It is therapeutic to share information."

When the Doctor says "Dementia"

Alzheimer’s disease and related dementias are not a part of normal aging.  Read more here.

This is the most important thing you should know.  

When I heard the doctor say that my mother had dementia, I thought that she meant normal, aging, memory problems.  I didn't realize that she was pronouncing a medical diagnosis, and I didn't ask for more information, nor did I go home and "Google" dementia.

Five years later,  in July, 2009, when she received a mid-stage Alzheimer diagnosis, I did some research.  What I discovered shocked me.  It also made me very sad.  My mother and I had spent five years on a journey without sign posts or other guidance.  I believe that these years would have been easier for both of us if I knew then what I know now.

If your doctor (or the doctor of a loved one) has said "dementia", here's a place you can start to get more information:Dementia Journey.