Time to break silence about Alzheimer’s

Dad has Alzheimer?s disease. There I said it. So does his brother, my Uncle Eugene.

Come to think of it, many of dad?s aunts and uncles were a little ?funny.? That?s what we used to call it, before we knew ?it? had a name. They would forget things. They repeated stories over and over.

At one time or another my mom, brother, sister and I all figured Dad had Alzheimer?s disease, but we didn?t say it. Nor did we take him to a doctor to see if anything could be done. We suffered silently.

But no more. It?s too hard. We?ve been there. There are thousands of families in Kansas who are suffering also. Many families in Marion County are affected by the disease. My experience won?t take away any suffering, but perhaps it can answer questions so others won?t feel so bewildered and alone.

For five years I have worked with the Alzheimer?s Associa?tion to bring the Memory Walk to Marion County. Although only a few people participate, the numbers have been increasing.

The Alzheimer?s Association has an office in Wichita to serve central and western Kansas. Money raised from the Memory Walk is used to provide support services to families of Alzheimer?s victims. They offer a 24-hour hotline, as well as scholarships for respite care and literature.

While we were planning for the Memory Walk this past fall, several people asked if they could talk to me about a loved one going through dementia.

First, you need to understand the term. Dementia is defined as significant loss of intellectual abilities such as memory capacity, severe enough to interfere with social or occupational functioning.

Criteria for the diagnosis of dementia include impairment of attention, orientation, memory, judgment, language, motor and spatial skills and function. By definition, dementia is not due to major depression or schizophrenia.

Alzheimer?s disease is the most common cause of dementia, but it is not the only type of dementia. There are many other causes and types, including, but not limited to, brain injury, Creutzfeldt-Jakob disease, dementia with Lewy bodies, encephalitis, meningitis, Picks disease and vascular dementia.

Families need to address the disease just like any other. There is no shame in dementia. It is a disease of the brain, just as diabetes is a disease of the pancreas and emphysema is a disease of the lungs.

When families stand up and fight the disease, others will stop running as well.

Toward this end, Hillsboro Community Medical Center has organized a Dementia workshop. The purpose of the workshop is to educate anyone about dementia. The workshop is free and open to the public, although reservations would be appreciated.

James Isaac, a neurologist from Hutchinson Clinic, will speak, as will pharmacist Eric Driggers from Greenhaw Pharmacy. They will discuss the disease itself, as well as treatments and medications.

Attorney Tim Hodge will address legal issues, including the difference between conservator and durable power of attorney, estate planning, living wills and Medicare.

Celia Koudele from the Alzheimer?s Association will discuss resources available for families and when nursing home placement is warranted. All speakers will have time available for question and answers.

To bring together such an experienced panel is rare. This is an opportunity for anyone in central Kansas to learn what to expect for the person affected by dementia. It will also educate family members about what they can expect. Alzheimer?s and other dementia are cruel diseases that affect the entire family.

If your family is affected by Alzheimer?s disease, you are not alone. President Ronald Reagan had Alzheimer?s disease. As did Charlton Heston, Rita Hayworth, Pauline Phillips (Dear Abby), James Doohan?and the list of famous people goes on. There are also an estimated 529 probable cases right here in Marion County.

Feb. 29 is the day to break the silence and find out the facts. Contact me at HCMC if you have questions, 620-947-1463. I?ll be glad to answer them. I?m not silent anymore.

Marsha Setzkorn is marketer and publicist for Hillsboro Community Medical Center. To find out more about Alzheimer?s and the Feb. 29 workshop, visit www.hcmcks.org or www.alz.org/centralandwesternKansas.

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