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"I'm having my gourmet meal with Jennifer!", wrote my client

Posted Jan 05 2014 12:00am
[Predictable on the App Store on iTunes ]
Difficult as it was, I assisted a nurse who had our client on a commode. She lifted this lovely lady, as volunteers are not to do this, while I wiped her bottom, and put two different creams on, one for each part of her body. We settled her back into her reclining wheelchair. The RN showed me the information sheet with various phone numbers. She put out the breakout morphine pills, in case she had the need for additional pain medications above the regular morphine dosage morning and night. These are pills I would simply pass to her.

My client has ALS and cannot speak. To my mind, that must be the most difficult disease. A steep decline, with no hope in a *disease trajectory that is fast, predictable, and lets you keep your faculties. It is what is. We cannot weep or mope while there is work to do. We live in the present. We prepare for the future

[*Does Anyone Have The Map? Navigating the Journey to the End-of-Life]


Her husband is a dear. They have sold their country home and are moving into the city, where services and a family member can provide support. A far-away daughter mailed Christmas cookies. A near-by son will help them move. I cannot imagine how they will face downsizing, and packing all their belongings, while caring full-time for this frail senior.

The nurse left, and I began to feed her her meagre lunch: paté and crackers. She is barely able to hold them, but I guided her hand, when necessary, refraining from doing too much for her. It is important to let a person do what they can, while they still are able.

She has a wicked sense of humour. You might ask how I know this, but she has an amazing iPad application: Predictable.

Using a wand, you are able to type in words. The predictable part comes, as with many text-to-speech software, when the computer matches words you use frequently, and lists them on the keyboard, simplifying and speeding up the laborious task of choosing each letter and building a word and a sentence. 

What else does one do, visiting a person with these disabilities?
"I'm having my gourmet meal with Jennifer!"
After lunch, I fetched a warm wash cloth and washed her hands and face. I removed her old, flaking nail polish, the gave her a good hand massage. 
Refilling her soft drink, after washing the mug, I put it back on her TV tray.
Next, she typed a message to me about lunch!

We sat and chatted about the news, watching the reports about the snow storms out east in the Maritimes. I asked about her family. Having taken my computer with me, I showed her photos of birds, deer, and my grandkids. There were a few phone calls, and I took messages. 
After a few hours, when dark was about to settle in, she began to ask about hubby. I told her that I had been asked to sit with her from 1:00 until 6:00. I was afraid to call hubby, especially if he was driving on this snowy day, but she became agitated (emotional libility) and so I phoned. He assured me that he was leaving the city and was on his way home. We both felt better!
It is possible to use
cursive writing, too.

I was asked back for another day, I guess I did well the first time, this time for 3 hours. I took with me; my crossword puzzle, drawing pad, a novel to read, and my computer. 

She was just finished lunch, this time, so I, again, cleaned her up, removed her apron and washed her hands and face. I worked on my crossword while she napped. Eventually, I suggested that I redo her nail polish. Putting several colours on her serving tray, she put away the ones she didn't want, and I painted her a lovely pink.

She had a lovely vase of flowers, and I thought I might sketch a flower to send to my grandkids. I suggested they could put it on *their* refrigerator! She guffawed in her own way! We grandmothers have to stick together!

She typed a new message, about 2 1/2 hours into this placement, "I wonder when his nibs will come home?" I roared with laughter! She has a wonderful sense of humour. This cannot be easy, accepting all of this physical, social and emotional support from others. She was a woman with confidence and independence, and this has now gone. She gave much to her family, the family photos reflect this, and it is now time to receive. There is a gift given in receiving help from others. I always get something back from my clients. 

She has keen hearing, and heard a sound from in the garage. "I think his nibs is home!" Hubby arrived home with Ensure, a liquid supplement, as well as medications and groceries. 
I wondered about ALS, and what the disease trajectory is like. I wonder if hubby has been given any information, or if he wants it. Their home is well-stocked with a hospital bed, commode, breathing apparatus, walker, and the like. The RN was terrific, guiding me my first day. The family will have to deal with a whole new crew in the city, all assigned by CCAC, who control the healthcare services we get in our Home Care plan. 
The family should get information on disease trajectory, as well as the issues and complications of feeding tubes, and life support. [ Considerations about getting a feeding tube - dysphagia ].

Symptoms

Early: Muscle stiffness, weakness, slurred speech, dysphagia (difficulty swallowing), cramps, fasciculations (involuntary twitching of muscles).
Later:  Progressive muscle atrophy, including dysphagia, dyspnea (breathing issues), respiratory complications, emotional lability (outbursts, excessive or disproportionate emotional reactions).
 Eventually, the patient is unable to breathe on their own.

Resources

ALS was made famous in Canada by Sue Rodriguez. See:  At the End of the Day: The Sue Rodriguez Story (1998) (TV)

Some decline rapidly, others slowly, with recovery in between. Others decline in a stair-like deterioration. All are normal, depending upon the disease. Many are predictable, even if timelines differ.
Disease Trajectory
The 8 stages of chronic illness trajectory 1.     Initial presentation of situation; occurs before any signs and symptoms of a disease
2.     Trajectory onset
3.     Crisis: potentially life-threatening situation
4.     Acute: post crisis-symptoms controlled
5.     Stable, symptoms are controlled
6.     Unstable: e.g. foot ulcer, 7.     Downward phase; progressive deterioration; mental & physical 8.     Dying phase, weeks, days or hours preceding death.

ALSDISEASE TRAJECTORY  (PDF)
ALSDISEASE TRAJECTORY AND HOSPICE ELIGIBILITY Terri L. Maxwell PhD, APRN VP, Strategic Initiatives Weatherbee Resources Inc Hospice Education Network Inc
homecareinformation.net/handouts/hen/2205_Presentation_Hando...
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