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Reader Responses

From a reader in Maine about Parkinson's disease:
Date: Fri, 30 Apr 2004 7:27 PM

Interesting article and the statistics and info on caregivers. I am 77 and my wife is 82, she has had Parkinson's for over ten years. Fortunately it is not progressing fast, thank g-d. I am the doctor, lawyer and Indian chief, I do most everything, my form of cooking, laundry, all finances, appointments, driver, you name it, I do it. We manage to do quite well all told.

We still have our own home, I take care of that, mow the lawn, put in flowers, minor repairs, paint, etc. Thankfully I am in pretty good health and so far I have managed to prevail. My sweetheart of a wife of over 54 years can do some things but she has recently had two back to back hospitalizations that really set her back. She has had the deep brain implant that stabilizes the tremor in her right hand and so far medications are helping but we know that sometime in the future, we will be in a difficult situation.

Our income and medical insurance is alright but if it came to a nursing home, we would be in deep trouble. I have nursing home insurance but we all know that it does not cover everything and it is not cheap! She cannot get any because of her disease. The idea of assisted home care I expect might come into play, all things considered but as long as things do not get worse I can hack it.

Time will tell.

From a reader about Taxing social Security, Sunday, Feb. 29 column:
Date: Sun, 29 Feb 2004 1:07 pm

So far, I'm able to manage my debt OK, but one statement by the gentleman in his mid-70's really hit home and fired my furnace!

I also have found that taking money out of my IRA causes my Social Security to be taxed. Strangely enough, it also causes a higher amount of my medical expenses to be excluded from a medical deduction.

So the story goes like this:
We have high medical bills.
We pay for them with money from our IRA.
Our adjusted gross income goes up! So...
We can't deduct the medical bills because our threshold is now higher. And...
Our Social Security is now taxed.
So we pay more taxes.
The only place We can get this tax money is from our IRA.
So we pay even more taxes.

It surely looks to me like a double (or triple?) tax on our medical bills.

Why am I being punished for getting old and sometimes sick? I have written short, concise, letters to my legislators and receive back from each a form letter indicating that neither they nor anyone on their staff read and understand my letter, but they are "fighting hard for seniors". Yea! Right! When pigs fly! Unfortunately, Legislators have much better, cheaper (thanks to taxpayers), and more comprehensive medical coverage than the rest of us, so how can they possibly understand? I surely wish we could give them a taste of their own laws and regulations.

From a reader about DNR Order Column:
Date: Tue, 31 Aug 2004

Just had to comment (and respectfully disagree) with today's column about a mother who signed a "DNR" order for her "competent, yet confused" (huh? Do the two co-exist? I think not!) elderly husband upon his admission to a nursing home.

You suggested that the adult children report the facility to a state ombudsman or agency. I think that they will be very unpleasantly surprised. Facilities which require a "DNR" order upon admission are perfectly legal. I worked in Philly for 8 years ('88-95) at a NHCU (nursing home care facility) and we also had that requirement upon admission.

As an RN with 23 years combined experience, (three of them as a CNA and eight of them as an LPN) I feel that I may comment on this subject with some knowledge. In the facility in which I am currently the RN Weekend Nights Supervisor, I am responsible for initiating the "codes" that you folks seem so fond of. As our facility does NOT have a "DNR" as a requirement of admission, I have 119 families out of 123 residents who do NOT have one. One resident is a 70 year old woman with a tracheostomy who has has the diagnosis of "hypoxia resulting in brain death" for EIGHTEEN YEARS. She has not been concious at all during that time. Her husband wants us to "do everything" in the chance that she would stop breathing on us...

I have many residents with dementia related to Alzheimer's, ASHD, and otherwise...combative, confused, exhibiting some "unusual" behaviors (one regularly treats other residents or staff to a "golden shower"- urine- and becomes quite combative when redirected) lady was the wife of the local mayor, a school teacher, well traveled and articulate, who now spends her days in an agitated state of demented ramblings and compulsive "laundry-stealing-and-folding" behaviors (would be kind of cute if it wasn't so tragic), another, who a few weeks ago, had advanced mouth cancer that had metastasized to her breasts and brain...she was found pulseless and breathless by one of our CNA's who had entered the room to get her changed for bed...and- you guessed it- the family had never signed a DNR order because they couldn't deal with Mother's impending death. I was called up to initiate the code, which I did, and until you've done CPR and mouth-to-mouth respirations (the ambu bag malfunctioned) on someone whose soft palate is half eaten away, and whose ribs were so osteoporotic from advanced age and cancer that we could hear them crack...then you have absolutely no right to judge a facility that has such requirements...(BTW, we DID revive her, she made it to the hospital and lived in ICU for another 12 hours...intubated and tranquilized...but, hey, the family was EVER SO GRATEFUL...note the heavy sarcasm)

You may be asking by about now, "So, what's your point?". And my point is...we are wasting thousands of dollars every day carrying out the wishes of families who haven't a clue as to what a "code" entails...we are keeping residents alive in state of such tragic existence that it would break your heart...yes, they are well cared for, have no skin breakdown, and are treated with the utmost respect and affection (I have a phenomenal staff, and stay because of them!)...but at what quality of life?

I would prefer to work again for a facility that had a "DNR on admission" requirement. When someone stops breathing, they are cleaned up, made comfortable, and with their CNA until life passes, and it is a very peaceful thing. When someone has reached the end of a long life, there is nothing wrog with allowing them to pass when the time comes, something that the mother of your writers might well understand.

If you're wondering if I would be so inclined if it were MY mother, the answer is yes. Mom and I are both nurses, well understand what is entailed, and want nothing to do with a "do everything" mentality. Both of us have well-documented and signed healthcare POA's stating the if we were to suddenly die, then we are NOT to be intubated, revived, etc...and will thoroughly sue the facility or doctor who dares to over-ride our wishes. I am 42, my mother is 62...both in excellent (thank G-d) health, and not expecting that to change any time soon. If my husband would awaken to find me gone, then he knows that he is to do nothing.

I don't know when death as a part of life ceased to be, and while I am a pro-life Jew, I also understand the quality of life issue thoroughly...and wish that more facilities would adopt such requirements.

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Planning Your Future with 20-20 Vision™

Today, more than 36 million Americans are age 65 or over. There are more than 22 million family-member caregivers. Then there are the Baby Boomers. All are grappling with the major decisions that accompany the latter stages of life. This book is for them. Written by two experts with decades of experience between them, it is a comprehensive guide that instructs readers about how to create a plan to deal with all aspects of aging, helps maximize options and ensure wishes are carried out.

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