Lewy Body Dementia; Runs Silent, Runs Deep

#1 in a Series of Life Reality Letters 

Care Giving is not for everyone. 

We see an end in sight with a baby. 
Eighteen to twenty one years usually.

When someone has a medical or physical challenge, we can't see into the future, there is no specific direction and often no markers or guideposts that definitely apply.

Parents of children with life affecting illnesses understand a little better about eldercare. 

Some have hope for positive change, for progressive forward movement. 

Those who care give for a family member with Dementia, mental and physical challenges, illnesses and afflictions, stand alone while standing beside and walking along life's winding, steep and ever changing paths.

You, there! Yes, you who sit in judgement and believe you "know what's best" and it's not "being given" as you "believe" it should be . . . 

Where are you? On the sidelines? Living far away? 

Separating yourself rather than coming alongside?

I've known you.  You're my oldest son.
You find fault in everything that's done.
  And it's never enough.
You cut your family off. 
  It's easier than coming alongside.
You have "your own" life challenges. 
  So do we all.

I've known you.  You're oldest son's wife.
You make no contact.
  No phone, text or email.
You "follow" his lead
 Appearing to support while actually directing
You proclaim yourself a "professional mother" 
 Limiting yourself to who, when and where you practice what you preach.

Non Care Givers, those who have been judge and jury, move from sentencing others to putting the past "away".

At the time, months after action has been taken and in the years that follow you never once say "Thank you for taking care of . . . Dad, Mom, Grandma, Grandpa, my brother or sister....."

You attack, you blame and strike out verbally because you cannot accept life changes you cannot control. 

You hold everyone but yourself responsible and accountable.

Life has lessons to teach you.

Life is working daily as you progress down paths set before you not always of your choosing or planning. And when you do make plans, they seem to have a life of their own taking unexpected shapes and sizes.

You refuse to accept change and believe you can erase the present while not seeing the future if you can discredit the past.

You refuse to listen. 

You refuse to become involved.

It's "their" challenge, "their" problem . . .  if any problems really do exist, you tell yourself.

You twist and turn reality without spending real time with the person who needs the care, without truly being "the caregiver", you make your determination the person "isn't as needy as you've been told".

You visit for a short time. You leave. You're hundreds of miles away from the day to day and the constant fluctuations of a disease that wrecks havoc on the individual and those who care give.

You do not tend to the person's physical and emotional needs and the few telephone conversations you have you write off any "challenges" to the transmission, the person's "hearing" or any one of a number of possible excuses.

You shout for all to hear "Abuse". You support anyone who "believes" this is what's happening. . . especially anyone you see as supporting you and "respects" your "distance" or the person affected with LBD, known for turning the care recipient against the care provider.

You see the past, not the present. 

You cannot cope with reality. 

You create what you need, what you can accept.

Love is blind, so they say. So is fear of loss.

Dementia is a thief in the night. 

Lewy Body Dementia wears many masks; it plays many parts as it moves slowly through the brain and the body causing challenges and incidents.

We do not "connect the dots". 

We see TIA's, high blood pressure, falls and other "signs" as not being a part of the process of LBD and other Dementia.

Dementia does not appear full blown overnight, usually. 

However, some medical incidents can damage and destroy capability and capacity which is highly noticeable and permanent.

Lewy Body Dementia is a very clever disease.

It seems to "wait in the wings", on "the sidelines", giving direction and coaching in the beginning.

As the disease progresses, it begins to become the lead player, replacing the person with its own persona.

Taking over. Becoming someone "different" to the world. 

Being seen in its full regalia, finally, by those who care give, those who care about and those who have the responsibility they've taken on as "Care Giver" and fellow traveler walking alongside and sometimes running to catch up with the changes, the differences, the needs of Lewy Body Dementia.

Life is Reality when you are fully involved; it's distanced when you choose to put yourself in another place and time.

Come. Sit. Stay. An LTC Resident's Life Part 2

In many facilities the practice is to ensure "resident safety" and that means "get them into a wheelchair as fast as possible". 

What happens when a call light isn't answered from a resident who's semi mobile but really needs assistance and can't wait any longer as it's already been twenty minutes?  

Independent as they want to be, limited as they are, they find a way to stand, usually cannot balance and what happens is what's predicted -- THE FALL.  

Repeat. Generate Report. Repeat.

Family and resident are "encouraged" to use a wheelchair.

Family members who are concerned may follow suggestions to "remove the walker" as "that's the problem".

Family visits occasionally but relies on "professional staff" for direction and "oversight".

After a few months the wheelchair is ordered.

Mission accomplished.

Many Long Term Care residences do not have the time or the staff to "assist" residents and most families do not have the financial ability to augment and hire outside caregiver believing "the facility" is supposed to provide ALL services -- especially when costs are at $6,000+ per month/per resident for the "basic provisions".

In reality, Long Term Care has become the "shelving level" for Seniors who are about to transition or who have transitioned into being stationary or highly limited -- except for those who come in because it's the only level of care Medicaid will cover.

It's the "haves" with the money or the family support who can stay out of the "State Supported" system. 

The rest move in and move on but few ever return to "outside living" because this is not a place to "rehab", this is not a place to "strengthen". 

This is a place to sit, to stay and to come and go when you're told.

Some once highly capable, independent people, become social manipulators and users of people to ensure they maintain a semblance of autonomy until the time when their body and their mind no longer can assert themselves.

Like children and pets who want to "please" they come, they remain seated and they stay where they're told.

It's not a life any of us want for ourselves.

It's a life many are in and deserve better!