I'm interrupting you....

I was busy cutting up vegetables and getting things ready for the evening meal. Don came into the kitchen with something very specific to say. Problem was; the words eluded him completely. He shook his head - he is still so handsome and is so soft spoken. "I'm interrupting you" he said sadly.
"No!" I shook my head. "I love talking with you!"
"You need to talk to someone who knows what they're talking about."

He left the kitchen.

Words fail the mind that has been assaulted by Dementia. The person is in there, but gets a little bit lost from time to time. Stress about it makes it worse.

If your loved one is exhibiting this kind of behavior, be very calm, matter of fact, and patient. I always just smile, touch an arm and say "Memory is a funny thing. Sometimes the words just refuse to come." And then drop it. Talk about something else.

Bloody Noses and Dirty Linens

Ella has been suffering with bloody noses lately. Her doctor says it's a combination of a few things, including high blood pressure, dry interior of her nose, and dehydration. I can help with the latter two.

Don is very concerned. I get the idea that they have always kept an immaculate home. One day I arrived to the above note. (I have whited out the actual name, as I keep my clients' names confidential.)

Ella tenderly showed me the note, and said it was special because Don never writes anything, anymore. What he was asking was for help getting the blood stains out of the fabric.

Yesterday I showed Don what happens when you pour hydrogen peroxide onto the blood stains. He was very amused and impressed.

Flashlight?

I'm preparing meals ahead for Don and Ella. She is unable to stand for long periods of time, so this is a great help for them. At the same time, I've got a load of laundry going. In walks Don, slowly, holding a lit flashlight in his hand.

"Will you be needing this in the next few minutes?" he asks.
I stop and look at him, thoughtfully. "I don't believe so... I'm sure I'll be fine" I reply.
"Ok, good. I"m going out to the.... the.... car place."
"The garage?"
"Yes!"
"Okay - see you soon."

Flashlight. I really wanted to follow him out there and see what he was going to do with it. One day soon I fear I will have to follow. Not yet.

The Don and Ella Chronicles

Don is a quiet man; an elegant man. He carries himself with the demeanor fitting for a respected educator, and mentor. He is married to a gracious woman, Ella, who is still beautiful. Don has suffered multiple heart attacks, and strokes. Ella has had hip surgery, and recovery is slow to happen. An in-home caregiver is not something they are used to. We're becoming comfortable with each other. Don knows his mind is slipping, and I am seeing this progress at an alarming rate. All of the warning signs for Dementia are present.  Ella finds it hard to just relax so she can heal. I will be sharing their stories here - as I am honored to share the sunset with them.

My legs don't work; my ears are fine (and other annoyances)

"You're such an inspiration!" 

Life in a wheelchair is life... but just in a wheelchair. Of course lots of things are more difficult. If the person who achieves mobility through the wheelchair used to be able-bodied, they obviously had some huge challenges to overcome. But the bottom line is - this is their life. That sounds simple, however it seems to be overlooked by many people.

When my friend with Spina Bifida is spoken to loudly and slowly, she looks up at the speaker and says "My legs don't work, but my ears are just fine."

My friend who is living with a Spinal Cord Injury says that many of the women with whom she works, who are also "in a chair", absolutely hate being told that they are an inspiration - especially by strangers. Imagine, being a wife and mother, shopping for groceries, in your wheelchair, and having a total stranger tell you that you are SUCH an inspiration... They call it the "I" word, as if it's almost a curse word. Think about it from her perspective. What exactly has she inspired you to do? Don't ignore her, but don't say something so empty of meaning. If you're looking for something to say, maybe you can say "Is there anything I can help you with?" She may need something on the top grocery shelf, and your offer would be gratefully received.

More on this tomorrow. Until then, may your eyes be open to the person, and not the chair.

Listen to me, please

As a caregiver, or "personal assistant" as I like to refer to myself, it is very difficult not to be deeply saddened by the hardships suffered by those for whom I care. At this time, my assignment takes me into the long, sad goodbye of ALS.

As the ability to speak becomes impaired, or begins to go away completely, a huge chunk of life's joy is stolen. Consider what it would be like to have a great thought, a funny joke, an observation, to add to the family's conversation at the dinner table - but nobody hears you. Your lips move, and you try to summon the air and the strength to be heard above the clamor, but nobody is watching. Nobody is listening. So you lift your eyebrows and shake your head slightly, two of the movements still allowed by your failing body, and you open your mouth to allow your caregiver to continue to feed you. The thought will pass.

ALS is a deliberate and focused thief. It takes every part of human independence, one function at a time. It does not, however, touch the personality, brain function, or physical sensation.

If you have a family member or friend with ALS, and they are having difficulty communicating, please know how frustrating and degrading this can be. Please, please listen. If they could, without losing that last shred of dignity, they'd plead with you "Listen to me. Please." All too soon they will be silent. The disease is relentless, and like a flood, it seeks out places to destroy. It will destroy the ability to speak. It's just a matter of time.

Hush, now, don't cry

How does the Care Giver stay compassionate and gentle, understanding and sympathetic, but not crumble and fall apart?

This is not an easy thing, and I don't really have an answer for you, but I want to tell you my story.

I am caring for a man far too young to be experiencing the revolt of his body called ALS, or Lou Gehrig's Disease. It's inching forward and stealing his life, one muscle, and one function, at a time. Two of the things this disease has not, and seemingly cannot steal, are his intelligence and his sense of humor.

That video shows the stark reality of what this disease does to the person who has to endure it. I want to do a series of articles on this condition, to help friends of those who have ALS understand a little bit more about what they can do to help them. The person is not the disease. The person is living with it. If you love them, please take the time to learn how you can love them well.