Things My Father Is Teaching Me: Dealing with Dementia… and Other Important Lessons in Life….

I am posting this for two reasons: as an update for anyone who knows my dad, but also as a discussion of some of the therapy modalities that are available for people with dementia and other impairments of memory, etc.

Often we feel sorry for our loved ones and want to “help” them by doing everything for them and thus relieving them of the burden, but what that actually does is accelerate the process of loosing function when we do not allow them the opportunity to think and try to do things for themselves. That accelerates their loss of skills.

We are spending a lot of time reinforcing “orientation” to him. Normally we are oriented x 4: person, place, time and situation. He is oriented x 1: he usually knows who he is. Sometimes he is even confused about that. But… with repeated reinforcement, he does better. He is brightest in the morning when he wakes up, and less bright when he is tired and in the afternoon. He is frankly confused after sunset and especially in the evening when he is tired and getting sleepy. He does not know where he is or the year or why he is where he is… but he knows that he is not at home. When he IS at home, sometimes he does not know he is there. In the morning he knows he has two sons and can sometimes say our names. He does not recognize me. When he is tired and it’s dark, he doesn’t recognize my mom. When he says “Mother”… he means HIS mother. During the morning and early afternoon and evening when he is not too tired, he asks where his wife has gone. At night, he talks about Mama… and uses different word patterns. He remembers his brothers and sisters, but not his children… and often not his wife…. At night he has no idea he has children and confuses his brothers and sisters for his own children. He confuses the idea of father: his being a father with his not really having known his father because his father died when he was very young. During the morning he can tell about how his brothers helped his mother raise him. At night he cannot. He hallucinates and delivers rambling soliloquies. He also develops word-finding difficulties. But on formal recall testing… he had excellent immediate recall… so there is something there to work with to reinforce and develop.

There are two aspects of dealing with dementia and how WE respond is very important. HIS response is “normal” for his situation. If I get upset because my own father doesn’t recognize me, then I am not going to be able to make decisions that benefit HIM. He needs reinforcement to remind him of what the world he lives in NOW looks like.

My dad also has Macular Degeneration, which compounds the issues because he cannot see well. Essentially he sees in splotches and even those splotches are blurry and distorted. He also has formed visual hallucinations and scintillating scotomata (specks of flashing lights). Because of his dementia, he cannot differentiate between what he sees and what he hallucinates. He also has Otosclerosis (hardening of his hearing) and misinterprets sounds… as well as having auditory hallucinations at times.

Now… let me try to explain his World….

“Reality” looks like a Van Gogh or Impressionist painting to him. But the visual hallucinations look perfectly real. “Reality” is filtered via his faulty retinas…. But his visual hallucinations are formed in the parts of his brain that ordinarily interpret vision… because they are not getting used… because of his faulty retinas…. So… they fill up with chemicals… and spill chemicals… that trigger PERFECT pictures…. And… he doesn’t have the memories and reasoning abilities to figure out that the Impressionist art is real and the real is imaginary…. And… then people… some who claim to be people he knows… but who don’t LOOK like the people they claim to be… because they are older… and their features are missing or distorted… try to tell him that they are important people in his life… and that what he sees as real… really isn’t… but they don’t look like who they say they are… or even like humans at all possibly…. Well… no wonder he gets confused. Especially when he is tired and taxed.

The best answer that we can come up with is to try to constantly reinforce where he is, the day and date, and the situation. We can see a flicker of a light. It’s like a spark when you’re trying to build a campfire. This may turn out to be a very positive experience. If nothing else, it’s helped us define a trajectory moving forward into the future.

One more thing…. When a doctor or nurse or therapist asked your loved one with memory issues a question… don’t be too eager to jump in and answer. Don’t correct the answer. Not allowing the examiner to examine… will lead to missing significant findings… and likely impede the care of your loved one…. The answer isn’t all the examiner is looking for: they are looking at the processing as well. Your loved one also needs to exercise their mind as much as possible. Being patient can be frustrating.

God is good.

Creativity… and CompartmentaliZZZZing!

I posted earlier about Compartmentalizing….

The Three Bs….

Follow-up….

My dad fell and broke his hip yesterday. Had hip replacement surgery today.

I compartmentalized….

If you look… observantly… you will see people compartmentalizing in times of extreme stress….

We humans focus on unimportant… or even frivolous things…. We obsess about meaningless minutia… in the grand scheme of things….

Like the food for the family to be served at a funeral. Who sent flowers. Who visited. Anything. Everything. To distract us from our grief….

We very rarely see out families… especially extended families… except at family events…. As we get older… those events tend to trend towards funerals…. Or hospitals….

Grief is a very strong emotion. And a very strong driver of human… experience…. Of human… direction….

Grief is VERY strong. Grieg affects us. Grief effects us. Grief changes us.

Because grief is strong enough to lift us up… out of our rut…. Out of our comfort zone….

Grief is strong enough… to change our lives….

Even when no one else notices. Even when no one else knows….

Even in our shame.

Grief and shame tend to go together.

Even when our grief… and our shame… are internal. Even when all of our scars are invisible to prying eyes… because they’re on the inside.

Compartmentalizing can be good; or… compartmentalizing can be bad.

Compartmentalizing can form an eschar. A truly hideous scar that prevents any real healing. Then… the wound needs to be debrided. The dead… corrupting… tissue… needs to be removed…. So that REAL healing can occur.

That’s what God is Good is really about. Examining hidden wounds…. Debridement….

My Daughter I Never Knew, too.

Don’t forget to examine your heart.

Romantic Love (lyrics as recorded on unromantically rough cut… and additions/re-edits….)

My printer has not been working. So… I’ve had to write out the lyrics rather than print them….

That’s just another opportunity to edit and re-edit… at or after the last minute….

I bought a new printer when I bought the new instruments… but I haven’t unboxed it yet….

Here are the current changes (made since this morning….)

Romantic Love
by BaHR
circa 1 January 1981
16 April 2015 0636-0656-1108

I’m looking for something more than just Romantic Love.
I want somebody. Could it be I want too much?
Don’t need no angel, just someone who really loves me.
Don’t want no demon who can thrill me with her touch-
‘Cuz I’ve seen it in the movies and I’ve watched it on T.V.
I’ve heard it on the radio, and that ain’t what I need.
Don’t want someone who’ll use me or lie and say that everything’s alright….
I just need someone to hold me in the middle of the night!
I’m looking for something…
(He’s looking for something…)
Looking for something…
(Looking for something…)
Pure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
Sure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
Something that I can feel.
(He’s looking for something…)
Looking for something…
(Looking for something…)
I’m looking for something… REAL!

I’m looking for something more than just Romantic Love.
I want some lovin’ like my dad and momma had.
Someone who’s sexy… all gussied up or in her blue jeans.
Someone who’s funny… even when she’s mad.
Cuz I’ve read it in the papers and I’ve watched it on T.V.
Seen it in those tabloid magazines and that ain’t what I need.
I don’t need someone to control me, or who stays out late at night.
I just need someone to hug and kiss me when I come home from work at night.
I’m looking for something…
(He’s looking for something…)
Looking for something…
(Looking for something…)
Pure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
Sure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
Something that I can feel.
(He’s looking for something…)
Looking for something…
(Looking for something…)
I’m looking for someone who will make me SQUEAL!

I’m looking for something more than just Romantic Love.
I want somebody. Could it be I want too much?
I’ve tried an angel, but she never really loved me.
Been burned by demons who can thrill me with their touch-
You know I’ve seen it in the movies and I’ve watched it on T.V.
Listened it on the stereo, and that ain’t what I need.
Don’t want someone who just wants my money or someone who wants to fight….
Just someone who’ll help me dry my tears when I cry myself to sleep… at night!

I’m looking for something…
(He’s looking for something…)
Looking for something…
(Looking for something…)
Pure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
Sure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
I’m looking for SO much more.
(He’s looking for something…)
Looking for something…
(Looking for something…)
I’m looking for something that won’t leave me sore….

I’m looking for something…
(He’s looking for something…)
Looking for something…
(Looking for something…)
Pure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
Sure.
(He’s looking for something…)
Looking for something…
(Looking for something…)
I’m looking for SO much more.
(He’s looking for something…)
Looking for something…
(Looking for something…)
I’m looking for something I ain’t never seen or felt before-ore-ore-ore!

Yeah… I’m looking for SOMETHING!