WHAT ARE WE GOING TO DO ABOUT MOM?

Those eight words can drop you to your emotional knees. If you have heard them from an administrator of a long-term care community or from a sibling, you know of the pain in the pit of your stomach.

This program is one participants say is the most positive, uplifting experience since learning that their loved one was diagnosed with one of the many forms of dementia. It's a day full of answers to serious questions from those of us who have walked the walk. You will leave with a load of ready-to-use ideas to solve real problems.

The entire program is built around two base-line questions we must ask ourselves:

WHAT AM I ABLE TO DO?

WHAT AM I WILLING TO DO?

Ultimately the answers to these questions lead families and family caregivers to good decisions about such huge issues as:

• Being proactive...starting early to develop plans...involving the person with dementia in the process
• Deciding how to best handle delicate situations (i.e., Mom or Dad can no longer drive, manage money or live alone)
• Studying and learning as much as you can about dementia (and where to find information)
• Whether or not to place a loved one in a care setting, and, if so, how to match needs and financial resources with available health care services (also finding out about additional charges when more care is needed)
• Getting acquainted with social services such as The Alzheimer's Association, Hospice, etc.
• Getting important legal documents in place to assure authority to make major care decisions
• Acceptance or rejections of medical recommendations about prescription drugs
• Relocating personal property...clearing out the home, dividing or selling property
• Team building if siblings are involved...making sure all have some part to play in the care and/or management of their parents lives
• Effectively accepting informal support when friends say, "Let me know if there is anything I can do."
• Managing payment of reoccurring invoices and assuring that retirement funds are properly deposited...and, sometimes, finding a specialized attorney for financial counseling
• Coming to grips with tough decisions that must be made as death nears

Caring for legal and logistical matters is often relatively easy compared to dealing with tough emotional issues. At the top of the list is communication. As memory loss progresses, the ability to "talk like we used to" disappears. Mom or Dad can't remember the beautiful shared moments from the past and, in later stages, doesn't know your name. The good news is: sweet satisfying communication is very achievable...you just need a new set of skills.

In this program, children, grandchildren, and friends can all learn skills to make their visits with a person they love who has dementia enjoyable and fulfilling. Sometimes family and friends stop going to visit simply because they no longer know how to spend time together comfortably.

Communication with a person is only one part of new skills families must learn. If the person with dementia is living in a care community, we have many new people in our world who play important roles in assuring that our loved one lives in an environment that is both safe and enjoyable. Good communication skills will make it possible to talk honestly about concerns and solve problems to the satisfaction of all parties.

Then there is the family. One expert has been quoted as saying that if there are stresses in the family before the diagnosis of dementia, there will be major strains as the disease progresses. There are serious issues to resolve when a person's life is collapsing under the weight of dementia. We will discuss thinking of the diagnosis of dementia as the beginning of a journey...requiring careful, thoughtful planning.

Generally, one child becomes the primary caregiver. Assuring the authority and support from siblings for that person to do what must be done is often a challenge for families. The primary caregiver must become a good diplomat to negotiate plans that all will support. Clear thinking and excellent communication are worthy goals and essential to the process, but often crazy making emotions escalate out of control.

So, we're back to the two questions: What am I able to do? What am I willing to do?

If the person who is designated as the primary caregiver has a career, children at home, physical challenges, etc. the answer to What am I able to do? has limitations.

Attending this full day program will seem like it lasted five minutes. It has been designed and is conducted by a mother/daughter team who worked together to assure that the matriarch of their family received EXTRAORDINARY care with two goals in mind: Mildred would be comfortable and always treated with dignity. But, the magic of the workshop is what happens when participants are in a room full of others who have similar questions and have found answers to share. The room explodes with ideas.

If you feel like you're alone in your boat, you'll feel much better after attending this program.

ACTIVITIES

Although some who write and speak about quality care for those with dementia prefer to use euphemisms for the word "activities", our experiences have led us to feel that ACTIVITY and ACTIVITIES are words with very positive meanings and outcomes.

Webster defines ACTIVITIES as: (1) The quality or state of being active; (2) An occupation in which one is engaged.

Respected authorities on the subject of dementia care say things like:

"To be occupied means to be involved in the process of life in a way that is personally significant, and which draws on a person's abilities and powers."   -from Dementia Reconsidered by Tom Kitwood

It is from these definitions and beliefs that we built ACTIVITIES for those with dementia. They are carefully designed to create involvement, engagement of the mind and body, and moments of joy.

People with dementia often lose the ability to plan a day and consequently end up with ...

"...nothing to do but sit with vacant time and empty thoughts."
-THE 36 HOUR DAY--Nancy Mace and Peter Rabins

We believe the perfect remedy is ACTIVE LIVING -- an environment full of "places to go, people to see and things to do."

While many objects (such as a television set) in the environment of those with dementia can be inanimate and/or not stimulate activity, those same things can be exciting and create joy. Certain game shows seem to capture and hold interest. The well done video tapes from The National Geographic Society are attention getting. Unfortunately, a television set can also become a source of "nothing to do but sit with vacant time and empty thoughts."

As we work to achieve our objective of creating an ACTIVE LIVING environment, some of our favorite activities are listed here.

IN LIVING MEMORY

START DOCUMENTING STORIES TODAY. Yours.  Your parents. Your siblings.  Your friends.  We all have stories and the only way they will survive the centuries is if we begin the process of recording our unique experiences.

Are you interested in learning more about an easy, efficient and exciting way to write about your life?  Perhaps you would like to record stories of a loved one with dementia? 

Simply click on the bookcase to the right and learn more about the simple, autobiographical guide, In Living Memory.