Letter From Home: The Journey 7/7/11


Our friend took a ride in a vehicle today.  That may not seem like news of any kind.  It was likely to be his last ride ‘out and about’; this is the aching truth about his situation due to advanced Alzheimer’s.  After this trip there will be less of an outside world to participate in, and instead more personalized care in a new home to match his growing medical needs.

This man’s agony over the past years has made me wonder how this all fits into the bigger puzzle that we call life.  This type of question has abounded since the start of time, and the answers are as elusive as they ever have been, does not stop me from pondering “why”, and for what purpose does all this happen.

I pondered this last ride all day and no matter how I approached the matter mentally the same medical realities bit back.  Alzheimer’s has robbed our friend of so many abilities that moving him about, as well as every other aspect of living, requires skilled nursing care.  There is no more carefree banter, or spontaneous laughter.  The big stage light of a  life is being narrowed bit by bit to a small glow.  The man who has a PhD can no longer write his own name.

Shortly after breakfast our friend journeyed from the Veterans Hospital to his new home at Badger Prairie Health Care Center.  I have driven that several times over the past days as James and I prepared for the move.  The city traffic and combustion gives way slightly to the country setting as Madison is left behind.   But just as soon I felt that the country scenes could be enjoyed the ramp comes into view that takes off to Badger Prairie.  There is not much time to enjoy the trees and flowers.  But then our friend has not been really enjoying them for some time.

On Wednesday, James and I were in court to secure guardianship of our friend be officially granted.  It was not the first time that James and I felt the weight of the responsibility for our friend, after all we have done everything financially and legal as his representatives for years.  If we had to do it all over again, we would sign up as it remains the right thing to do.

Yet I could not deny the feelings inside that told me his child, who lives only a few miles away, never once in the last few years made contact with him, or attempted to carry any of the responsibilities.  For whatever reason she dropped her father, and now even if she wanted to rekindle a relationship it is too late.  The father she knew is gone to a disease that is the most wretched way to exist I can think of.

There have been times that James and I have shed some tears over being the ones that had to literally see his authority to make decisions erode as the powers that he signed over to us years ago forced our hands to insure his safety and well-being.  While what he have done meets the praise of the court, social service agencies, Alzheimer’s Association, and all the medical teams we have interacted with, there is no way to describe the taking away of ones’ right to vote.

I must admit there was some humor in the court room when it was stated (again) that our friend was not to be allowed to have a gun.  (Readers of my blog might  grin over the back and forth of that topic with our legal counsel.)

The journey that this disease has forced our friend to take is also one that has altered our lives and sharpened our focus on how to fight for what is right.

From having his apartment fitted for safe-living years ago, to finding alternate housing as the disease progressed, to fighting for better food and more activities in that facility, to then seeking more professional care as events warranted, there was always ‘something’ out there to deal with.

From sitting in a number of meetings that lasted up to two hours or more just to have contractual agreements fulfilled, to fighting for fresh vegetables and more fruit at meal time, to making sure medications made it to the pharmacy to be bubble-wrapped, we worked to make sure no issues were dropped or ignored.  We became pains in the butt to some, and friends to others we never knew the last name of.

When things did not go according to how we knew they should for the safety and happiness of our friend we went to the state agencies that govern the facilities.  We are not afraid of making a scene to insure the right thing is done, especially when word was given years back to do the very best when things got tough.

There are too many people needing these memory care facilities, and too few rules and regulations governing them.   No one should have to see signs like this one (below) on the walls of a facility.  This one was posted after  we raised an alarm about what happened to the many wet wipes and wash clothes we bought.  At the end of the day I worry about all those who do not have advocates to fight for them.  (Who throws away wash clothes?  That is another post….)

Our friend’s increased needs started to arise at the same time my mom passed away, and my dad’s health problems started to increase.  Not being able to effect positive change for my dad’s health for many reasons, I decided to make a difference in another way.  James and I never looked back after we started the journey with our friend and his fight with Alzheimer’s.

That there are so many others on a similar journey is so sad.

The day we moved our friend away from the old facility I stopped into the room of an elderly lady (89) to alert her to the move.  Too often faces just ‘disappear’ from these homes leaving some to wonder what happened.  I did not want this lady to think death had claimed her friend.

After informing her of the move she expressed that his needs would be more tended to in another place and then asked “What about us?”

It hit me hard, and I really did not know how to respond.  While we had advocated for our friend, all the residents were benefiting.  When we forced the facility to follow the rules, all who lived there gained.

There is no way to save the world.  Though I wish I could .

In the end, all I could offer her was one of our friend’s large bookcases for her many volumes that she still enjoys.  James and I moved it to her room, loaded it as she directed with books, and closed the door as we left.

The journey that this disease forces too many to take is most dreadful.  As the toll takes more and more away from a person the journey becomes even more solitary as the outer world loses meaning.  At some point even a last trip in a vehicle is lost to the ravages of an illness that defies a remedy.

4 thoughts on “Letter From Home: The Journey 7/7/11

  1. Darlene & Lori

    Albert was a very intelligent man to have chosen such loyal and dedicated friends to watch over him when needed. Sadly, most assisted living facilities and memory care facilities employ people that often only have a High School education or less and/or have English as their second language to do the menial tasks of caring for an individual and most become complacent in a very short amount of time. They simply do not care since it is not their family member or friend. I’ve been in places where they steal from a patient because they knew the patient wouldn’t even notice. Or they help themselves to patient’s treats that were left by a loved one, while the patient slept. It is something that has made the need for such an institution, a place of fear and dread for most of us who have witnessed a loved one in such a facility and who worry about our own future. Here for instance, our VA nursing homes employed only nurses and CNA’s to care for their patients. Under George Bush’s administration, he cut the funding to them and they were forced to go with outside companies. These companies in turn, to make an even bigger profit, hired people that were easy to under pay and thereby cut their labor costs. And that cost or lack thereof, was passed on in the form of low quality care to the patients by angry overworked employees. Public assisted living facilities and memory care facilities are a hundred times worse than the government owned ones are. Another trend I see, at least here in Florida, is a conspiracy of sorts among physicians who treat elderly people. They are found on the boards of many of the nursing homes, are often part OWNERS of the homes and are extremely quick to want to send a person to one of them. It has, for me, become a battle royal to keep my mother away from these kind of physicians and in her own home. There is no reason for her to go other than they want to bilk her Medicare by putting her in there. The fact that I am there to speak up for her, has saved her but, what about all the elderly who have no children or no children close by, or children who not wanting to be put upon will opt for the easy way out? I loose sleep thinking about the abuse they endure. And please don’t get me started on the absolute horrible care the elderly receive in our emergency rooms here in Florida. They are quick to run a gazillion tests so they can get that Medicare money but, like in my mother’s case when she fell and split open her head, took 8 plus hours before they bothered to sew her up. They laid a pile of gauze on her forehead and left. Of course she continued to bleed due to the blood thinners most elderly are put on, to the point it soaked through all the gauze and caused her hair to go totally red. I’ve seen frail elderly people left in scanty hospital gowns with nothing more than a sheet in 60 degree rooms. If you are in your 80’s or over, you pretty much are the last to be seen and you are given the least amount of comfort care. I don’t know if any thing can be done across the board nationally and if so what that would be. I mean, you can’t make people who become complacent in their jobs, care. But they should be held accountable because it’s just plain wrong. Not to mention, it sure does scare the crap out of the rest of us who aren’t getting any younger.

  2. CommonCents

    Greg and James, you are to be commended. Albert is fortunate.

    I hope for change, but want to cry when I see friends and family, support the tea party and, thereby, oppose their own best interests, such as Florida where people elected someone who was convicted of crimes as their governor! A man convicted in the largest Medicare fraud case in history!! In other words, defrauding the elderly. How many citizens of Florida are on Medicare, but they elect Rick Scott!!

  3. Marion

    make it your mission to change some of the laws in your state that don’t advocate for the elderly alzheimers people. you know all the places to go and talk to people. your blog could be the way to get it all started. no legislators want to take on this cause unless it affects them personally you’ll find. keep up the good work and find a way to make it work more through regulations and better management.

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