Don and I were discussing his Lewy Body this morning and connecting with any issues and feelings that we had on our minds.
As we talked I mentioned something that Don wants me to try to explain to you all who read this Blog.
One of the difficulties with Lewy Body is the secretiveness that occurs. The sufferer feels unable to connect with people that do not have the disease and often keeps to themselves how the disease is affecting them on the inside.
It is almost impossible to bridge the gap and understand their feelings and how our reactions to their feelings affect them. They feel alienated and it becomes a vicious circle of alienation, more secretive, more paranoia, more alienation, etc.
An analogy is how society helps/hinders a person with a physical disease or disability versus how society helps/hinders a person with a mental disease such as Lewy Body.
If a person were in a wheel chair and needed to make a call and the nearest phone was up 2 flights of stairs the person in the wheel chair would not be expected to be able to make that call without assistance. Either an elevator would be installed, or phones available on the first floor, or an attendant would be available for assistance. Society understands that their part in the scenario would be to provide a way for the disabled person to function as fully as possible in an abled society.
What society in general doesn't understand with a person with Lewy Body or other brain disorders is that the sufferer IS in a wheel chair - it just isn't a physical wheel chair. It is a wheel-chair that surrounds the mind and creates the same barriers as the physical wheel-chair does to the physically disabled person.
A person with Lewy Body loses the ability to sequence the steps of decision making, gets overwhelmed with the process of seeking help and then tries to hide from people the fact that they can't initiate the process of finding help for a problem they are having.
The phone that they would need to use might as well be up 2 flights of stairs because they can't understand the process of how to ask for help.
The difference between the way society acts is this:
Of the physically disabled they would think: you are in a wheel chair I know you can't get up the steps let me help.
Of the mentally disabled: there's a phone not three feet away why don't you get off your butt and use it?
The physically disabled know how to use the phone they just can't get to it.
The mentally disabled can get to the phone they just don't know how to use it.
When we joined a support group for Alzheimer's sufferers we thought it would be a way for Don to get to know other sufferers and to share stories of how they were coping. That never happened. It was a frustrating time for Don and we finally quit going.
We couldn't figure out why it didn't work until our talk this morning.
Early and mid stage Alzheimers and Lewy Body dementia patients don't talk about how they feel inside. They don't open up about how they fear confrontation, how mentioning the budget sends panic their way, how they feel alone and afraid. They instead talk about what the facilitators bring up, or how they bemoan the fact that they can't drive anymore. They talk about safe, victim status issues that the facilitators and society seem to understand.
The issues of feeling helpless to initiate a decision-making process, the feeling of paranoia that people are plotting against them, the feeling of having to be secretive because people aren't interested or can't possibly understand how they feel inside. They don't or can't tell others of all the emotional and mental turmoil that is roiling around inside.
Alzheimer's and dementia are often called by caregivers as the disease with the long good-bye. That's our take on it.
But as I see and now understand more for the sufferer it is a disease of a long erosion and the feeling of sliding into a bottomless black pit.
No wonder the Alzheimer's support group didn't work for the sufferers. How can victims of this mind erosion all of whom are in various stages of the disease possibly communicate their frustrations to others who are feeling the same feelings but don't know how to express them?
The caregivers portion of the groups are great. We also share the understandable things of the disease. When did you take away their driver's license? Does your spouse make a mess in the kitchen like mine does? Who do I call to provide day care, bus service, respite care, monetary help?But we don't talk about how it feels to watch a beloved spouse withdraw from you, or how it feels to watch them unable to cope with daily living. Or how it feels to watch the rock, the center of your universe slowly slip away. One joy I have is knowing that I can now be Don's rock. I know that later he may not know that I am his wife, but that I will be the rock that keeps his world on an even-keel.