For educational purposes only.

10/28/01 Arizona Daily Star

Guest Opinion The blessing that comes from providing care By Susan Jerez SPECIAL TO ARIZONA DAILY STAR

Ten days after my 82-year-old mother suffered a vertebral fracture, she was in a nursing home for rehabilitation to get her back on her feet.

I had taken care of her for the seven years of her unraveling with the dementia of Parkinson's, and after watching the therapist working with her, I suggested a way of directing her action that might be more effective.

"Oh, yeah," he said, "we have a whole wing of Alzheimer's here; it's like talking to a dog."

Two hours later, I was back with transportation. As I rolled her chair to the door, the director came running after me, angrily asserting I would never be able to care for her at home.

"Watch me," I said, and we departed.

Two years later, with her body mostly useless now, she is at least comfortable, listening to her own music, safe in the surround of love.

I've been told she has no quality of life, and we ought to put her somewhere. That would assure that what she does have - loving attention to her needs - would be gone.

Loathe to try it, they have not discovered the blessing of care. They told us the same thing after my father broke his hip.

My mother cared for him at home his last seven years. Two weeks before he died, he was briefly in the hospital, and the doctors argued we ought to put him somewhere.

He died in his own bed eating breakfast, his favorite meal of the day. We were able to gather around him in the wake of his departing spirit.

We as a society see no value in the infirm and are frightened and repelled by the face of death - as if we will not wear that face ourselves, by and by - so we wash our hands and turn aside. Then we rise up with a clucking and fluffing of feathers when the scandal of nursing homes surfaces once again.

The last place you want to be if you are helpless is in a place where the help is inadequate and you can be ignored, or worse, with impunity.

After my father retired from the pulpit, it was my privilege to drive him and steady his walking so he might continue to serve the residents of nursing homes.

He prayed and sang with them, delivered a short message to encourage and brighten their hearts, then moved among them with personal greetings, remembering their families and their histories.

Then, we made our way to the bedridden.

Below a window, a woman lay still as the dead. He took her hand, I held the other, and he prayed aloud in his soft rich voice. As he prayed, I watched, her body quiet as stone. Then she squeezed my hand.

Remembering still brings a rush of blood to my face.

It is true that after the ravages of blood clots and diseases and structural fractures, we are not the same any more.

That is not to say that what is left has no value. It is the soul that we comfort, and that self sails on, however tattered the vessel. That self recognizes affection, delights in music and fresh air and suffers when mistreated.

The truth is, private care at home costs much less than a nursing facility and better serves the patient, who lives his or her final days in comfort and privacy.

The confinement experienced by the caregiver is balanced by the satisfaction in honoring a life.

No one can sustain this kind of care alone, of course, and I'm not a medical person. When I needed help, I discovered the community was ready with resources, and I had a lot of company in my endeavor.

I have been heartened by the depth of my mother's friendships, and our church family has remained steadfast.

We have become intimate with the community of visiting home health care workers, and I have never met finer people.

Many say the right to life begins at conception. When does it end, when a person can no longer find her way home?

* Susan Jerez lives in Tucson.

All content copyright © 1999, 2000, 2001 AzStarNet, Arizona Daily Star

-- Aunt Bee (Aunt__Bee@hotmail.com), October 28, 2001

Answers

The truth is, private care at home costs much less than a nursing facility and better serves the patient, who lives his or her final days in comfort and privacy.

I don't believe this if you're talking 24/7 care. There are other tradeoffs an Nuring Home vs Home-home. Caregiver burnout comes to mind.

I agree with many of the points in this article but ultimately we are limited by what is possible.

-- (lars@indy.net), October 28, 2001.

Amen. What a mighty, mighty article. Thank you for this.

After a year in 5 hospitals, 4 nursing homes, 2 home health care settings, 23 doctors and four close calls with death, I can tell you the nursing homes almost killed me, even when I started out relatively stable. One place even broke an extra vertebra turning me. I had friends sneak in food for me to eat when I dropped to 90 pounds. They would wheel the corpses past my room to the back door ambulance when another death occurred. A few angels, and many mean caregivers there. The housekeeping staff was more compassionate.

Home health care is tough in other ways for caregiver and patient, but for me it is the only hope for recovery. I need to write a book on guerilla caregiving.

Thanks again for this article -- it brought tears to my eyes.

-- Oxy (Oxsys@aol.com), October 28, 2001.

The article: "The truth is, private care at home costs much less than a nursing facility and better serves the patient, who lives his or her final days in comfort and privacy."

Having (among other experiences) watched my elderly father-in-law care for my mother-in-law who had Alzheimer's, stretching over roughly a decade before he moved her into a care facility, I think I can add a proviso to this statement. The cost in dollars may be much less to care for a sick relative at home, but not all costs can be calculated in dollars.

At the end of a full decade of intensive, 24/7 home caregiving, my father-in law was an emotional and physical shadow of the man he was. He was seriously contemplating suicide when my mother-in-law was placed in a care facility. He continued to contemplate it, frequently and seriously, for at least 5 years following the death of my mother-in-law.

Sometimes there is no simple, easy and good answer. Sometimes, life forces us into situations where every answer brings hard choices and heavy costs. Nobody guarantees that there is always an acceptable way forward or a good way out. Sometimes pain is the only way forward and the unavoidable cost of being alive.

-- Little Nipper (canis@minor.net), October 28, 2001.

Lars said:

I agree with many of the points in this article but ultimately we are limited by what is possible.

Certainly Lars. Fortunately in this community there are options for certain caregivers. There is support available not just through support groups, but home care support, as well as respite care. One must also evaluate one's constitution and level of patience in deciding whether you can walk this path. I agree, it is not always an easy choice. It does force you to look into your soul, to see if you have "what it takes" and go from there. Each of us must decide for ourselves the path we travel. Having been through this four times in my life, I know it only too well. We all have to decide what we can live with. Unfortunately in this disposable society, many decide to take the sanitized, less humanitarian way out. It is sad, but it is so.

-- Aunt Bee (Aunt__Bee@hotmail.com), October 28, 2001.

A point that may have been lost here -- if you already know after 4 tries that nursing home care will most assuredly cause your death, because of the way your body responds to that model, then if you MUST pick nursing home care over home health care, it becomes a different choice.

It becomes a choice of nursing home (slow) or bullet to the brain (fast). You see? Very simple. Don't leave out the reality here.

If you are facing an impenetrable decision, look for mitigation to what you do want and need, not accepting the "option" that is unacceptable because it leads to coma and death.

-- Oxy (Oxsys@aol.com), October 28, 2001.

Oxy--

We are getting close to the euthanasia issue. Not every sick person could lift a gun if they had one.

-- (lars@indy.net), October 28, 2001.