When Parkinson’s Disease hit my family

I have a relative; we’ll call him George, who lives on the other side of the country.  Growing up, I’d see him once or twice a year, at most, but when I did see him, it was special.

 

He would play the piano, we would watch sports, and we would talk about life.

 

He is such an amazing person that I, as a lifelong Los Angeles Dodger fan, even forgave him for his love of the hated San Francisco Giants.  No easy task, I assure you.

 

Then something happened that changed our family, and particularly my East Coast family, forever.

 

George was diagnosed with Parkinson’s disease.

 

Parkinson's Blog, Parkinson's symptoms, Parkinson's diagnosis

 

At first, it wasn’t terrible.  For the most part, he was himself.  Over time, we would notice his voice getting softer (a common symptom of Parkinson’s), and we would notice the tremors that are the hallmark of the disease.

 

But overall, he was still George.  We visited him in late 2009, and everything seemed fine.  My mother and I have both worked with dementia patients for years, and we noticed no trace of dementia.

 

That all changed in 2010.  After a severe car accident, George was never the same.  He began declining more rapidly, and the dementia component of Parkinson’s disease began to set in.

 

Not all Parkinson’s patients suffer from dementia, but it soon became clear that George would.  Even talking to him on the phone was different.  His speech was slow, and featured significant pauses.  Often, I wasn’t sure if he knew what I was talking about.

 

Only my training as an elder care expert prepared me to handle this new reality.  But even that training couldn’t possibly help George’s immediate family, and the impact on them has been devastating.

 

A couple of years ago, George, a brilliant man with a Ph.D., had to stop working.  His wife now supports the family.

 

George suffers from many of the classic symptoms of Parkinson’s, such as:

 

  • Tremors

  • Rigidity

  • Slowness of movement

  • Postural instability

  • Nausea

  • Depression

 

These symptoms, in George’s case, have been combined with significant dementia.  Talking to him is just not the same.

 

Perhaps the biggest challenge for the family is George’s care.  The East Coast tends to feature fewer care options than, say, California.  As a result, George’s family has to pay for round-the-clock, in-home care.

 

As anyone familiar with long term care can attest, in-home care, especially 24-hour, tends to be the MOST expensive option for care, often totaling $10,000 – $20,000 per month.

 

If you were to ask George’s family what the worst part of this ordeal is, they would not tell you it is the financial cost or the cost as far as time and effort of providing care.

 

George’s family would tell you that the biggest toll has been emotional.  To see their father, their husband, having his physical abilities, his mental faculties, and his dignity stripped away is truly heartbreaking.

 

His family has to help him with his most basic daily functions.  This gut wrenching and humiliating experience takes its toll both on the patient and the caregiver.

 

The nearly 1 million Americans currently living with Parkinson’s understand this better than anyone.  That is why it is so important to broaden the research currently being done on this horrible disease.

 

In addition, it is vital that Parkinson’s patients and their families get connected to the right resources to help them ease their burdens.

 

For more information, visit the American Parkinson Disease Association at:  www.apdaparkinson.org

 

You can also visit the Michael J. Fox Foundation for Parkinson’s Research at: www.michaeljfox.org.

 

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