I have worked in the health care profession in several roles for 16+ years. Always in a Long Term Care setting.

In the beginning I was a C.N.A. I did direct care with elderly residents suffering from many types of ailments. I began to learn, life is cruel, life isn't fair, and laughter is the best medicine.

About 2 or 3 years into my caregiving role, the question entered my mind, and I have not resolved it in my head or in my heart, help me understand.

What is worse...aging and your mind fails you, you don't remember your family or friends. You are lonely and afraid, lash out at strangers because everyone is a stranger OR your body fails you??

Diseases like A.L.S. (Lou Gehrig's disease) or M.S. (Multiple Sclerosis) affects the body. ALS is a disease of the nerves cells in the brain and spinal cord that affect muscle control. Short version, it starts with the arms and legs and slowly works it's way up to the musles of the lungs and breathing is no longer possible independently. Swallowing becomes impossible.
You are aware what is happening, in the end stages you can hear but can not communicate. The shell of your body is useless as your mind is totally aware. M.S. has to do with nerves and messages from the brain to other parts of the body. Cognitive problems may occur with MS, but again you are aware. Stroke is one more example. The extent of the damage of the stroke can leave you paralyzed, but the mind may be active, and sometimes the ability to communicate is gone.

Do you want to know your destiny? Do you want to know what lies ahead? Do you find comfort in knowing your family and friends will remain in your life until the end?

OR

Do you want to live a life not knowing who is taking care of you? Do you choose not to be aware of what happened to you yesterday or not being able to look into the future? Is it better not to see the sadness and despair in your loved ones faces?

I know we can't put in our order concerning our destinies, I just want to understand. I wonder if there is a master plan, I wonder if the tests we are given are a result of our lives lived and what we can endure.

Please help me understand.

Oh, how can this be?
You and I are losing me
Some day soon
May be morning
May be noon
I will no longer be the me
You and I know as me,
And the answer seems to be
Words, and thoughts, frequently scramble
And my conversations seem to ramble.

Oh, how can this be?
You and I are losing me.
What do I see when I look into your eyes?
And neighbors come just to pry?
Confusion, hurt, pity, and pain
For I am ill and not insane.

Oh, how can this be?
You and I are losing me?
Oh, help me pray,
"Lord, please come to me and take me
Home with you for all eternity."
What can we do to keep from losing me?
"Nothing," say the experts.

Oh, how can this be?
You and I are losing me?
But in my confused and foggy state,
To You I plea,
"Love me--Remember me--Help me
To be--For as long as I can be
The me we know as me."

Thoughts of an Alzheimer's patient.

"We cannot hold a torch to light another's path without brightening our own." -Ben Sweetland-

Caregiver's Bill of Rights

It is all right to:

BE ANGRY. Turn this energy into positive action. Clean closets, take a walk, talk with someone.

BE FRUSTRATED. Stop the present activity, take a deep breath and begin a different activity.

TAKE TIME ALONE. A favorite chair in a quiet room, a trip to the store or a few hours out with friends.

ASK FOR HELP. Explore family, friends, and local agencies for resource services. Most docotor's offices and clergy can make referrals.

TRUST YOUR JUDGEMENT. Relax, you are doing the best you can.

RECOGNIZE YOUR LIMITS. You are a valuable person. Take care of yourself, too.

MAKE MISTAKES. No one is perfect. This is how we learn.

GRIEVE. This is a normal response to loss. You may be sad over the loss of the way things used to be.

LAUGH AND LOVE. It may seem out of place, but your capacity to feel is not gone and can occur unexpectedly.

HOPE. Tomorrow, the day may go smoother, a friend will call, a cure may be found.

By the year 2030, an estimated 20 percent of the U.S. population will be 65 or older. As the American population ages, a growing number of people will be serving as caregivers for family members affected by dementia and other types of functional impairments.



"Ability is what you're capable of doing. Motivation determines what you do. Attitude determines how well you do it." -Lou Holtz-

I love statistics. I think putting a number on something puts it into perspective for me....and it is all about me

These statistics are about caregivers in general, not specific to dementia related illnesses.

1) 77% of caregivers are female.

2) Average age of caregivers: 58 years old; 32% of caregivers are 65 years of age or older.

3) 78% of care recipients lived at home with a spouse or relative.

4) 47% of those caregivers under the age 65 worked (full time 33%; part-time 14%)

5) Of those who had been in the labor force under the age of 65, 10% had quit their jobs to give care. Another 11% reduced their work hours.

6) 43% showed clinically significant depressive symptoms. 56% report feeling "anxiety or depression" within the last six months.

7) 79% of those responding said the patient could not be left alone.

8) 63% are unable to perform 3 to 5 activities of daily living. (ADL's are things like showering, eating, toileting, dressing.) 56% are incontinent.

9) 56% of family caregivers had annual household incomes of under $40,000. (2005 dollars)

10) Average number of hours caregivers provide care: 84 hours a week..the equivalent to 2 full time jobs.