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. 

Waiting for a crisis - one thing we'll all do sometime

Speaking with a friend last night I realized that there is one basic thing that nearly all of us share when it comes to dealing with elderly family  - that is the waiting for some crisis event which forces a change for our loved one.  We wait for the fall that puts mom or dad in the hospital and then the nursing home.  It's the stroke or heart attack that signals the start of their decline.   Or, it's the car accident that means the loss of a drivers license and cancellation of insurance.

Elder care professionals call these "sentinal events" - some event that is often a tragedy and that means a big change in the living conditions of our loved one.   Most often the outcome of these events means drastic change or a tragic outcome  Think of the stories we read of elderly people found wedged for days between their toilet and the wall or someone who's fallen and never got up.  After waiting for so long we can only react to the circumstance; there are only a few options left by the time an event occurs.

Why do we end up waiting?  It's because we have no other option.  The parent/elder is not sick enough to be hospitalized or might have a chronic condition.  She or he might be right-minded enough to say "leave me alone" or there just are no funds to help provide any assistance to prevent the incident.   We WANT to respect our elders so we respect their need for independence. We don't want to hurt their feelings or pride or our relationships so we let things be.  We know something will happen, it's usually only a matter of time.  We wait and wait then deal with the outcome.

The waiting is hard.  We see the decline, the weakness, the potential; we know something is coming but we don't know what or when.  We grow anxious, we get stressed, angry or frustrated but there's nothing we can do.    In some ways the waiting is easier because if we let things go long enough the options for our elder are limited.  Their condition may be such that a nursing home or hospice is the only option.  I have to ask myself if this is so bad.   We might do things that prolong the life of our elders but what about the quality of that life?  For me, I'm glad my Mom was in her home for years and admitted to a nursing home late in life.  She was surrounded by her family, her favorite sentimental things, her own roses and friendly neighbors.   The house didn't get as clean as I'd like, the lawn was under-watered and the flowers often gangly but she didn't care. She was simply happy to be there.   So I had to be satisfied that she was content and worry less about the time she had left.  We chose to put her immediate happiness first.  It was hard and I often worried but looking back, I'd do it again the very same way.
What is a sentinal event , when should I move mom dad , mom doesn't want to ove what do i do , dad doesn't want to move what do i do ,dad won't stop driving what do i do 

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.

A healthy old age - use denial and adjustments..

I find that there are two critical things old people need to deal with advanced age - denial and adjustments. I had this epiphany the other day as I tried to plant a couple of lilac bushes in our yard.

I grabbed one pot in each hand, took two steps, felt a pain in my left thumb and dropped one of the pots. It was like being stabbed in the left thumb; the outer most knuckle to be exact. I was shocked. I'd done this very thing many times before but now I could not. I'd had some stiffness in that thumb but have been working on a lot of jewelry so thought it was an under used muscle. Not so; today it is a swollen red hot knot. I managed to get the pots across the yard by carrying one close to my body and wrapping my left arm around it. I carried the other normally but the whole chore was changed due to one knuckle. As I dug the hole, filled in the dirt and watered the plant, I favored that stupid thumb. For each task I made minor adjustments so I could just get those plants in the ground.

I have to admit that I knew the knuckle was getting worse but I ignored it. To admit it hurt and was stiff would be admitting that my age is showing, that I'm slowing down. I'm only 47! How could I be slowing down? I'm not OLD!!!? I am, however, in denial and it's not such a bad place to be! Denial enables me to keep trying to do anything I want. Denial removes the fear that I might not be able to do something. I can also deny that it will take longer, that I might suffer stiffness or that I might need help.

My mother did so many things throughout her life - gardening, fishing, canning, typing, laundry, chopping, dicing, slicing - all a lot of fussy little tasks to grow our food, fix our meals, support our work and school lives. We never noticed the minor adjustments she made so she could do it easily and quickly. She just made minor adjustments so that she could continue to do it all as she grew older, slower and weaker. She never discussed it she just kept going like nothing was wrong. She was also in denial over these necessary changes.

Before moving, Mom was proud that she did all of her own laundry. Never mind that it took all day, that she used a special "grabber" to reach into the washer and dryer or that she had to store the soap in a waste basket on the floor. She was happy to sit directly in front of the dryer, pulling out each individual piece then folding each ever so slowly on the kitchen table. She never complained, she just kept at it until the laundry was done.

After my own experience, I found that denial is required to keep going as our bodies stop working as quickly and nimbly as we once were. Dwelling on it would only mean frustration and depression. Mom just kept doing things because she had to. So, I'll follow her example. I will deny that I have difficulties, I'll make adjustments so I can keep getting stuff done.

Friends pride and denial risks Mom's safey

An old friend called a couple of days ago looking to find some way to help her mother after she returned home from a back surgery. It was an odd call full of questions from her and sound answers from me (or so I thought...) but I don't think she got the answers she wanted from me. Long story short, my friend can't realize that her mother probably needs the professional care of LPNs, RNs or CNAs after surgery. She wants to keep her mother in her own home rather than use the available resources to ensure that her Mom is safe and well tended during her recouperation. She seems too proud to admit that her mother needs the additional assistance of professional care givers.

Here's the scenario:
Friend's Mom is 84 and has severe osteoporosis; so bad that she broke three ribs trying to lift a 10 pound chicken from the freezer and thus the need for surgery. She lives alone, goes to mass each morning and walks 2 miles a day. In the past year she has been hospitalized and recouperated at home after a severe bladder infection and again after surgery to repair cracked vertebrae. The vertebrae surgery required a brace that was nearly impossible for her to get off and on by herself and limited her movement and increased her risks of falls. Friends Mom had bad experiences with pain medication; she was either allergic or took too much but because she was home recouperating alone, no one knows for sure. She woke up on a soaked kitchen floor with buckets, cups and plates all around her and no memory of what happened. There have also been some instances when Friends Mom got lost when she travelled to an unfamiliar part of town; it's small enough that she should have been able to find her way to familar territory.

My friend hoped to work out a schedule with her siblings (think no cost to Mom) but they all have commitments to jobs, kids in school and in-laws that need support during chemo and surgeries as well. Her dependable and responsible siblings used their available vacation time for Mom's previous recouperation so had none left to use.

My first response was : Let Medicare pay for time in a rehab center (nursing home). (They pay for 100 days, 3+ months of rehab care after surgery or hospitalization).
I thought my friend would have a herd of cows right then and there! You'd think I suggested throwing her Mom out the car door at high speed. It went something like this: (Explicative)...Mom can't go to a nursing home! She's not one of those old ladies! How could you even SAY that?!! My second suggestion was to contact a home health care provider to go by 3 to 4 times a day but at nearly $16 per hour that was out of the question as well.

In all honesty, Friends Mom IS one of those old ladies. She is quite frail, needs someone to ensure she eats and taked meds regularily. She also needs companionship and, most important of all, she needs some skilled nursing care (think professionally trained) and rehabilitation to get back on her feet after this surgery. She will ONLY get that at a nursing home or from home health care aides. If you can afford the care at home, by all means, do it, other wise take advantage of the Medicare policy and let your elder get the care s/he needs. 100 days is a long time to recoupe from a surgery and she would probably would not be there long but she's likely to recoupe faster with the care they can provide. Rehab centers or nursing homes are well prepared to deliver 3 meals a day, medications, physical therapy, bathing and toileting assistance. These are things that we just can't do well at home if we're helping out as our busy schedules permit. Our Elders deserve the full attention of professionals if we aren't able to do it.

To be sensitive to my friend - She has deep love and respect for her Mom. She wants to be supportive, she feels guilty and knows her Mom will feel best emotionally at home. Yet,she expects too much of local relatives who can't be there and she is unable to travel to help due to her own job. I can say, based on my own failure to act, denial is really easy but can cost Mom a lot in the end. There comes a time when our elders need our help in spite of our own preferences, pride and aversions. Let go of the stigma that nursing homes are terrible. Most of these facilities realize that the payments they get from Medicare are important and reliable revenue; they won't screw it up. Their employees also enjoy knowing that they can help elders get back on their feet and WANT to see them go home because it means they did their job well and had a success. They are proud of the kind care they can provide; we just need to swallow ours and let them do their jobs for our elders.