Winding down...Together

Today

Delphine: Here is a picture of my Mom taken today. I brought her some dinner as something different than nursing home food but she was real tired and wouldn't get up and kept dozing off so ate very little. She is down to 107 lbs.

Trish: Amazing. They are both losing weight and changing so much. Give your Mom a loving hug and kiss for me and tell her that her niece Trish is thinking of her. Wish I could see your Mom again. I'm sure you feel the same way. We take those we love so much for granted.

Delphine: I am so glad I had so many happy years being here at the same time your Mom was. Lee and I had your Mom and Dad and My Mom and my kids here for a couple Thanksgiving and Christmas dinners. And enjoyed it so much. Also Bob and I used to go to your folks and play cards now and then. Was such a good time.

They knew so many people here and I have people asking all the time how your Mom is doing and remembering their bridge parties together with your folks and how every one got such a kick out of your dad. Where did all those years go to bring us to our Moms now looking like this. It is sad. Love, Del

Contact

Betty and I visited Mom tonight. Betty brought her camera and had me shoot some photos. Later tonight she sent me copies and said...

She knew us, we could tell. At the end of our visit when we each said "I love you Mom," she replied softly "I love you, Betty" and " I love you, Trish"...t'was all she said...

Mom's Care Plan Review

Today was Mom's first Care Plan Review under hospice care. I participated from my office via conference call. To sum up what was covered:

Mom’s current weight is 147 pounds, down 9 pounds in the last quarter. She has trouble chewing, so they are changing to all ground/pureed meats. They are using liquid supplements between meals which Mom takes readily, but sometimes has trouble swallowing. Her leg muscles are contracting so are curling up, in turn causing heel pressure sores. They are not erupted, and she wears pressure boots in bed to minimize the problem. Pain is better, but still significant. Therefore, they are stopping the patches and changing to liquid Methadone, as well as twice daily Morphine. Within two weeks they anticipate her pain level to drop significantly. Behavior has already modified somewhat with pain control, i.e., less hollering. Volunteer companions and staff observe that Mom’s eyes convey recognition and cognizance, and she will attempt verbal communication with groans/moans, but no talking. They agree with me that talking with her is a definite comfort, and she likely hears everything and understands a lot. I asked for email addresses for Hospice team members and team leader took mine and will get them to me later today.

The last time I visited Mom (last week with Daniel) Daniel and I both got responses from Mom with her eyes and verbally, but only when I leaned over her, talked loud, and asked direct questions – mostly moaning a positive or negative but no words. The time before that with Betty, Betty and I heard her talk a little. No one at Eventide or Hospice has heard her talk in a month, they said.

While Daniel stepped out of the room for a moment last week, I leaned over Mom and told her how much I loved her, admired her, etc. She looked deep into my eyes, and I looked back, and it was such an intense, incredible moment. I leaned over and kissed her, and held her hand…then Daniel came in and I acted like nothing happened – it was something I wished to keep for myself and not share, at least not then.

While this article refers to President Reagan, it’s actually a general guide to anyone with advanced dementiaMom’s condition, and offers some of the most specific information on what to expect, including life expectancy.



The information below is an extract of an article documenting a recent study of patients with advanced dementia...

BACKGROUND: Nursing homes are important providers of end-of-life care to persons with advanced dementia.

METHODS: We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups.

RESULTS: At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%).

CONCLUSIONS: Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.

Mom is receiving wonderful care considering what many people receive. It is a blessing to have a well-established and well-respected hospice near Mom that can offer such compassionate care at this difficult time in her life.

Harriet's Memories

My Mom shared this with me in 2003...

When I was 8 or 9 years old, my sister Alberta left home to go to nurses training, I was so lonely without her. When Christmas time came she wrote home that she would come home on the train and had one big wish. The wish was that Dad would come meet the train with the sleigh and horses. So Dad put the big grain box on the four-runner sleigh and put harness on the horses. The harness had all kinds of silver bells on it. Mom heated up bricks to keep our feet warm and we got in the sleigh and had the fur robe with us to cover our feet and legs. The horses trotted over the snow and the rhythm of their trot made the bells ring out a beautiful melody that only you can remember if once heard! Just writing about it I can still hear those bells jingling in my memory. It makes tears come to my eyes thinking of what we are missing today!

My Dad loved to play pranks. Alberta and I had been uptown one evening and came home. There was no one home and we came in and lit the kerosene lamp and sat at the kitchen table by the window. She was reading stories to me. I was listening really good but also had my eye on a coat that was on the door knob of the door going into the dining room. I saw the coat move and told Alberta and she said it didn't and to be quiet and listen to the story. Previous to this something kept hitting the window and I was scared and Alberta said it's just acorns as it was the fall of the year. She went on reading and I listened and all of a sudden I looked and the coat was gone. I said how come the coat is gone now. Alberta picked up the lamp and held the bottom of the globe with me behind her, and bravely walked toward the dining room door. Just as she entered out popped our Dad with a big BOO!

"...the grace of one hour"

Impenitentia Ultima

Before my light goes out for ever
if God should give me a choice of graces,
I would not reck of length of days,
nor crave for things to be;
But cry: "One day of the great lost days,
one face of all the faces,
Grant me to see and touch once more
and nothing more to see.
"For, Lord, I was free of all Thy flowers,
but I chose the world’s sad roses,
And that is why my feet are torn
and mine eyes are blind with sweat,
But at Thy terrible judgment-seat,
when this my tired life closes,
I am ready to reap where of I sowed,
and pay my righteous debt.
"But once before the sand is run
and the silver thread is broken,
Give me a grace and cast aside
the veil of dolorous years,
Grant me one hour of all mine hours,
and let me see for a token
Her pure and pitiful eyes shine out,
and bathe her feet with tears."
Her pitiful hands should calm,
and her hair stream down and blind me,
Out of the sight of night,
and out of the reach of fear,
And her eyes should be my light
whilst the sun went out behind me,
And the viols in her voice
be the last sound in mine ear.
Before the ruining waters fall
and my life be carried under,
And Thine anger cleave me through
as a childcuts down a flower,
I will praise Thee, Lord, in Hell,
while my limbs are racked asunder,
For the last sad sight of her face
and the little grace of an hour.

By Ernest Dowson

House to Yourself

"...time apparently did nothing but blunt grief's sharpest edge so that it hacked rather than sliced. Because everything was not the same. Not outside, not inside, not for her. Lying in the bed that had once held two, [she] thought alone never felt more lonely than when you woke up and discovered you still had the house to yourself. That you and the mice in the walls were the only ones still breathing." - Lisey's Story Stephen King