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Topic Tough Love--A patient's comment for the Caregiver at wits end Go to previous topic Go to next topic Go to higher level

By bandido1 On 2009.10.28 15:21
suitable for framing:

This message is being directed to you because you need some education! Oh yes, I know you already have learned enough and no stranger is going to tell me about something I don’t already know. Based on what has come to my attention you could still use some additional knowledge.

But first, let me introduce myself. I am a retired 77 year old . Prior to my retirement I served as a senior vice president for the oldest (1868) trust department in the U.S. For just about 25 years my duties included caring for people unable to care for themselves. Usually we were appointed by the court to act as guardian or conservator of the estate (all assets and liabilities). Normally a family member is appointed as guardian or conservator of the person. Also, during those 25 years a private trust may have been created to safeguard both assets and a person who is usually incapacitated in some way (physical, mental, addictive, behavioral etc.). You might correctly assume that I have seen it all!

So let me get “up close and personal” with you—just as I had to do when I was a trust officer. For starters we have at least one thing in common. We have both been diagnosed with Parkinson’s disease, a really horrible disease that is, at present, without a cure. You probably know a couple celebrities with Parkinson’s. Both Michael J. Fox and Muhammad Ali are Parkinson’s patients and each of them has a foundation looking for the cure while constantly assisting in identification of helpful drugs and treatments. So far, successes have been limited. There are some drugs assisting in the control of symptoms but most patients would agree the most visible ones are still very much with us and the drugs are apparently effective for a limited time.

Just so you understand, I am authoring this paper for you and not because I don’t feel as angry and frustrated as you. I can’t walk on my own more than 10 yards without losing my balance and hurting myself. I drool onto my dinner plate while constantly wiping my runny nose. My muscles have begun to deteriorate and I cannot shower without help, dress myself, tie my shoes, or knot a tie. I cannot drive a car, sign a check, or turn over in bed (without major maneuvering). I love steak, spaghetti with meatballs and sausage and deep fried catfish but someone has to cut them into small pieces so I can eat it with a spoon! Yes, I could go on and on but you get the message don’t you?

Now I want you to recognize a few more matters that are Parkinson’s related. Luckily for me, I have managed to retain much of – but not all- my short term memory. For example I usually miss my doctor’s question about what I had for breakfast the day before yesterday. It’s called mild dementia. One of the drugs prescribed for me is believed to cause my vivid dreaming, but I consider myself lucky because the same drug can trigger compulsive or irrational behavior such as gambling, alcohol abuse and/or sex referenced unacceptable behaviors. Hallucinations are common also but luckily I am not in that group yet!

• Does the thought of dying bother you? Are you angry about that? Get over it! You have no control over it.
• Does your family seem to be helping you deal with Parkinson’s? Chances are they are doing their best, but you aren’t sure so the anger kicks in and you may even resort to childlike behavior. Give your family or caretakers a break!
• Are you furious because you lost (or are going to) lose your driving privileges? Think about old codgers like me driving over the white line, driving wrong way on a one way street, missing stop signals etc. and ask yourself if you want to be responsible for a death or serious injury to someone else. GIVE IT UP!
• Do you really think you accomplish much by failing to take your prescribed medications? Yeah, I know, you’re going to die sooner or later. But why make it more miserable for friends and family trying to help you feel at least somewhat better.
• Do you resent giving someone else a Power of Attorney because you think you are still “smarter than a fifth grader” and all your relatives? Try signing your name 12 times and then tell your acquaintances and your banker how your penmanship compares with your fifth grade work.
• Would you be brave enough to allow for a neuropsychological exam of your condition (if you are covered by some insurance)? I know the truth hurts and you are already hurting enough! Stiff neck or shoulder? Weak knees or hip? Arthritic feeling in the lower back?
• Have you recently discovered that gambling of all kinds points one to the yellow brick road to riches? Think about it!
• Does butt pinching, porno movie watching, or other heretofore unacceptable behavior suddenly seem like they should be included in your daily routine?
• Have you noticed that not too many people want to be around when you are present? No, it isn’t body odor; it’s the nastiness Parkinson’s sometimes adds to a patient’s personality. Me thinks we all have a big chunk of it. How about you smiley?
• Come on now. Are you really a PIP (pain in the posterior)? Someone thinks so or you would not have received this.

By annwood On 2009.10.28 21:40
Thank you, Bob. We need to review this periodically.

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