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.

Loving what I do

I sometimes get a little emotional over my work. Especially when I hear reports of elderly abuse or neglect. 


Martha and I were watching the news yesterday, and a report came on regarding a Caregiver who had stomped on the feet of a couple of elderly Dementia clients, and shoved them. My throat immediately felt tight, and anger boiled up. I watched Martha's face. I know she was thinking what I was thinking. Thank God she's safe, and at home.

What's for lunch?

Martha loves it when I just decide to make something for her, rather than making her figure out what she wants. Here's what we had for lunch yesterday:


Crescent roll sandwiches
Olives and Pickles
Salsa for "dunking"
Chai tea latte

Tip: Purchase whole food crescent roll dough without hydrogenated oil or MSG


Unroll crescent roll dough and separate into triangles. Arrange triangles so they will fit together when one is placed atop the other.


Cut real cheese squares into triangles and place on on half of the dough triangles
Cut non nitrate and nitrite-containing lunch meat into triangles, or gather gently to fit on top of the cheese. I usually just wad up some thinly sliced meat and stuff it on there!
Place the second triangle on the first, stretching a little as needed to form a border you can pinch together well. Place on ungreased baking sheet and bake iin pre-warmed oven at temperature and for time indicated on package, but check often and turn over once or twice during baking. 


Serve with a small dish of salsa for dipping, or with tomato soup. For those with limited use of hands, cutting the sandwich at least in half is helpful.

Accompany with raw vegetables, olives, pickles, or whatever you enjoy. And then - enjoy! 

When Martha Prays

Martha's son died in 1997. He was her firstborn. He, like his father, was a USAF Colonel, and flew those huge jets. He died of a heart attack while still far too young. She confessed, to the caregiver who preceded me, that she had been unable to pray aloud since the death of her beloved son. 

Fast forward to Maundy Thursday at Martha's church. I was honored to accompany her. We brought the wheelchair, and arrived 30 minutes early. the set up was very informal and friendly. 6 - 8 people sat at each round table, and shared plates of food. After the dinner portion, we had Communion, right there at the table. Each person was to pass the Elements and the wine to the next person, and there were words to be repeated. I had to help Martha, due to her severe Arthritis.

Then came the prayer, at the table, holding hands in that circle. My heart skipped for a second, wondering what Martha would do. Would she squeeze my hand, signalling for me to just take my turn?