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 

Keeping mom's house as is...are we crazy or sentimental?

I've decided to make some changes at my Mom's house and I'm feeling a wee bit guilty.  Mom moved into assisted living more than a year ago and we've kept her house just as she left it.  My brothers and I never discussed what to do with the contents for several reasons. The two most important were that we knew mom would visit the house and we wanted her to feel it was still "home".  We didn't want to cause family issues because arguments over "who gets what" will surely follow.   

My decision to start making changes is two fold - I want to get rid of the junk no one would want later and I want things better organized.  Mom was a very organized person and she had a place to store everything.  She didn't accumulate a lot of "pretty' stuff or knick knacks - everything had to be useful; it's the art of living well on a limited budget I suppose.   As she got older putting things in their "right" spot became less important as finding the most-used items at arms length.  She couldn't bend over, kneal down or stand on a stool to reach things anymore - everything ended up on counters, shelves and table tops.  When she moved I got rid of half that "stuff" now it's time for the rest to go too.

Since she's 90 I intend to spend more time with her and this means more stays at her home while I'm in town.  I can't stand living around the junk anymore so it's got to go.  As I type this I realize that I'm trying to talk myself into feeling better about tossing, giving and storing her things away.  I know there are practical reasons too which helps make me feel better.  When she needs more of my time and attention I'll worry less about cleaning her home and yard if I get rid of clutter and get it clean now.    When she finally passes away, going through things will be faster and easier if three's less to do and if she's already designated who gets what.   

As I sort things, I can hear her voice telling me where it came from and pointing out that this or that still has some useful purpose.   It's still Mom's house, it will always be Mom's house and I'm sad to have to make changes but it's necessary.   If I must continue to stay here and if my brother continues to live here with his own set of health problems, we've got to make the most of the space with some extra cabinets and clutter removal.   Living at Mom's will always feel like her home but it will just be an improved version. 

Medicaide not covering some prescription costs due to missing info.. ARGH!!!!!

I just found several bills for 3 months worth of Mom's prescriptions at the nursing home - this is for her portion of prescription costs after payment by her supplemental insurance.   I was told that these would be covered by Medicaide but OHH NOOOOOOO!!!  No one told me she MUST be enrolled in Medicare Part D to get this co-pay covered!!!

Generally, if a person is on Medicaide, their Medicare premium is paid the the state (Medicaide) and their premium for Medicare part D is greatly reduced to $1-$5 per month.  Long story short, the Social Security Administration  which administers Medicare has no communication from Mom's state Dept of Health that she's been approved and receiving medicaide, there fore, she can get Medicare Part D to cover this co-pay but until the SS office gets word from the state - her monthly premiums and deductible are MORE than the co-pays!!  I learned all this after four calls this morning.  I was especially preturbed that I spoke with a woman at the Medicare-Medicaide service call center - I assume she's paid by the federal government or employed by a contractor of the federal government - who took down all kinds of information then suggested a specific PRIVATE company that would best meet mom's needs for the least amount of money.   This choice is based on her prescriptions - it seems that private companies are diving up the pie.

I HATE this confusing BS and it really makes me want to advocate for ONE SOCIALIZED system - as it stands now her expenses are covered by two government programs, one private program and I need to get her enrolled with a 2nd private company to pay what the other 3 (2 public/government and 1 private) will not.   It means 4 sets of paper work, 4 sets of billings, 4 mailings, 4 account numbers - IT'S INSANE!!! It's no wonder that Medicare fraud is so easy!   I don't want to reduce American jobs but I wonder just how many people are employed to manage this mess? How many people are employed by doctors offices and nursing homes to wade through this mess?  If it were in ONE program, might it cost less money to administer?    I get especially frustrated when I consider the number of people to manage this bureaucracy and the waste versus the needs of patients and the push to drive down the cost of their care.  If it were all under one umbrella plan, perhaps it could cost less and my Mom wouldn't suffer the indignity of the cheap solution!!