The Cost of Dementia

My sister recently gave me a newspaper clipping that talked about the high cost of dementia.  The article by Karen Kaplan from the Los Angeles Times states that the cost of dementia is higher than the cost for treating people with cancer or heart disease.

What Kaplan says is true.  I've seen it in other families, and we are experiencing it ourselves.  Most people with dementia will run through their own resources very quickly.  I know that Mother's nursing home and medical costs top $50,000 a year, which is more than her income.  When people run out of money, medicaid helps with the cost, but think of what that costs our society when according to the article, 14.7 percent of Americans over the age of 70 have some type of dementia.  And medicaid does not cover the cost of dental care, or clothing.  The $30 a month allowed for personal care is minimal too.  Even with Mother's income and medicaid, the family still picks up several hundred dollars worth of expenses each month.  Kaplan says that when informal care for paying bills, buying groceries, cleaning the resident, etc are tabulated, the cost of care rises even more.

But the cost of dementia goes way beyond money. For me, despite the financial pressure of dementia, the emotional cost is even greater.  When a parent who has always been loving hits you, or curses you, the emotional toll is tremendous.  The daily grind of having to cajole the parent into brushing his teeth or keeping his clothes on grinds away at your heart.  The pain of not being recognized by your parent tears at your soul.  Watching your parent slip into the fog and not being able to hold on to them is devastating.  And families deal with this day in and day out year after year after year.

The most difficult part is that there is little to be done.  We have to pay the money, we have to brush the teeth, we have to bear the insult of being unknown to our parents, we have to move forward day by day.  We just put one foot in front of the other and take the next step.

Dignity

One of the most valued of human rights is dignity.  Dignity signifies that a person is valued and worthy of respect.  It can also mean the self respect we project to the world.  There is very little innate dignity in Alzheimer's.

Those plagued with dementia have lost much of what the rest of us call dignified behavior. Residents may walk out of their rooms naked or wearing only their diapers before staff can get them back into clothes.  Sometimes a resident will take off her clothes while watching TV or while waiting for dinner to be served.  Sometimes a resident will play with himself while sitting in the common area until staff can get him distracted or out of the room.

There is little dignity in incontinence and having to have someone change one's diaper.  There is little dignity in being next in line for a bath and having to be belted into a PVC pipe chair to be bathed.  There is little dignity in not being able to tell which plate or cup is yours and eating after everyone else.  There is little dignity in howling over and over because you have lost your mind, and you don't know that you are howling.

Yet, even in the midst of all of the undignified behaviors, there is dignity.  There is dignity in the kindness of an aide that says, "Let's go get your pajamas on if you don't want to wear clothes."  There is dignity in an aide saying, "Well, Mr. Smith, let's take you to the bathroom and help you get cleaned up."  There is dignity in the patience that is extended everyday to those whose behaviors are undignified. Despite the indignity of Alzheimer's, Mother and others are treated with great respect.  They are still valued and loved, and by the way they are treated, we preserve the dignity they cannot give themselves.

Physical Slide

 I didn't see Mother for six days out of the last two weeks. A brief stay in the hospital.  Visiting a sister who had cancer surgery.  Spending time with grandchildren and children.  These are all vital and a part of my life, but when these other parts of life call, I have to miss some visits with Mother.  I often feel so very torn at these times.  I wish I could be two places at once, but because that is impossible, I have to rely on the care she receives from the staff at the home to be enough.

The one positive thing about being gone is that I can get some perspective on Mother's condition.  This time I noticed that Mother is slipping physically.  When she was first diagnosed, she had no other health problems.  Now she has had a mini-stroke and her hand is clenched.  She coughs frequently.  Walking is becoming more difficult.  At first, people told me that it was too bad that she had such perfect health.  And now I understand better.  With perfect health, Mother was trapped in the hell of dementia with a strong body.  Now, she is still strong, but I am beginning to see her body beginning to fail.

I don't know if this is a blessing or just a part of the cursedness of Alzheimer's.  On most days, Mother stays in her bed and naps.  She will sometimes sit with the other residents or be willing to go outside, but mostly I sit and hold her hand.  I massage her arms and legs and moisturize her face.  She smiles and whispers.  I have to get very close to hear her, and sometimes it is impossible to know what she is saying.

Her physical decline is just as devastating as her mental decline.  The long goodbye, is how Alzheimer's has been labeled.  It is true, and it is a torturous journey.