The state of denial is a weird place to live...

I am watching someone live in a state of denial and it's hard to keep my mouth shut. The past couple of weeks I've been staying at my Mom's home where my brother is living. Mom's in a nursing home so it's just the 2 of us there. Normally he's an impatient jerk to family members but this visit, he's been pretty nice and that makes me wonder just what's going on.. He's been visiting a nurse practitioner about high blood pressure and they want to run stress tests in a couple of weeks. I can tell he's anxious about it all.

I can also tell he's suffering from bad emphysema and he mentioned something about COPD - chronic obstructive pulmonary disease. I also worry about colon cancer since it runs in both sides of our family and he's never been checked. At 66, he's terribly short winded and he can barely do anything requiring exertion. He has an ugly cough that rattles from deep within his chest. He can't walk to the mail box without stopping to catch his breath. He looks at least 10 years older than his age. However, he talks about things as though he's much younger and more able.

He talks about fishing, moving to the mountains and buying a boat. He talks about travelling to see friends in the Philippines, seeing beaches in  Hawaii and Mexico in winter.   He talks about others in health with disgust and complains about how they treat their bodies but still drinks several beers a day and finishes off one pack of cigarettes by evening.  I'm quite realistic so it's hard for me to listen to this.  I want to scream, "Look at what you've done to YOURSELF!"  "How can you even think of buying something at your age in your condition?!"  But I don't, I keep my mouth shut.   I say nothing to prevent arguements - for his sake, it's the last thing he needs and, selfishly, I just don't want to deal with his vile temper.   I know he can't have long, a year, perhaps 2 at most.  I wonder how much his body can take.  I patronize him I suppose but it's easier on him and on me.   I went through this with an uncle years ago.   He was terminal and we all knew it but we let him live in denial.  He had hope for every day.  He was interested in things and happy every minute.  I can only hope the same for my brother for every day he's got left. 

What's the "best truth" for our elders? The state of denial ain't so bad....

I regularly read several online publications about care giving and lately I really want to smack a few authors and a whole lot of commentors.    A very common question is "How do I get Mom or dad to stop asking to go home?"  or - "How do I get my dad to be nice" or "How do I get Mom to face reality?"   There's always some dope who comments like this:  "If you respect your parent, you'll tell them the truth...you'll make them see that they need help."..."Tell them their behavior is unacceptable; force them to change." 

( Some major eye rolling and HEAVY SARCASM intended) - Yea, right... obviously they do not have an elder in their life and they've never spent more than a day or so helping an aged and sick loved one.   That is the absolute WRONG advice.  WRONG, WRONG, WRONG!!!!!! Nothing will make your elder and you - but ESPECIALLY YOUR ELDER -  more miserable.   I've been through this over and over with uncles, grand parents and now with my own parents.  It is a rare - I REPEAT A RARE elder, who is realistic about their situation and their abilities.  To force them to face reality is simply the cruel, mean thing to do.    The truth is harsh and inevitable - joints, eyes and hands all failing; blood pressure and blood sugar up and down; lungs or kidneys working at greatly dimmished capacity;  bones that will break with the most minor fall - the inability to make new memories and someday, relatively soon, choices about life support, caskets, cemetery plots and burial clothes  - this is the truth, this is the reality.  Simple but fearful and painful.

In our culture we insist on truth. We place great value on it; we equate truth with respect.  The two do go hand in hand but not in the case where you are dealing with an eldery (and perhaps demented) person in the last stage of their physical life.   The truth of their situation is too much to bare.  They can't understand that they need multiple medications to maintain their existence.  They want to be where life meant the most - at "home" where they felt loved, comfortable and surrounded by the things they earned for themselves.  

We - their loved ones, family and friends  - are not comfortable with this truth - that they are failing, that they are frustrated, that we can't fix it.  There is no logic, there is no pill, no amount of therapy that will help. So  why tell them? Why make them understand the gravity of their situation?  We will only have to say it again and again. They won't remember so we only frustrate ourselves.  We can only make their current existence more tolerable. We can only love them as best we can.   We can help them live in a state of denial and it's okay.  It's the respectful thing to do; it's the loving thing to do.  We tell them that "home" is there just as they left it, waiting.  We tell them that when they're better, we'll help them get there. We lie and it's okay.

Years ago my uncle was dieing from lung cancer but in his mind, he would re-couperate. He'd get disability and have all of his time free.  He would set up his dream wood working shop and make lovely furniture.  We knew the outcome; he had only months, most likely weeks, to live. His surgeon called me one day angry that he was not "moving through the stages to acceptance" of his terminal condition.  My reply:  "Why is that necessary?"  The surgeon could not answer.  He could not tell me how my  uncle would benefit from the harsh reality that he would soon die.  I and my family helped my uncle live his lie.  We watched videos of New Yankee Workshop and discussed wood working techniques.   We read wood working magazines with him, we planned furniture.  Each visit he had hope and looked forward to something.  He was not a spiritual man but I know deep down inside he knew his fate.  He was distracting himself with another truth - he kept his mind busy dreaming of what he'd do at "home".   After all of these years, I know he is "home" and he's busy in his wood shop. He is in the home he dreamt of during that final time of his life.  I'm glad we helped him live that lie because it meant that we laughed, continued to share and that he felt good about every one of his last days.