HUMANITY HIKER

The past week has been a difficult one for Cindy’s care.  In the wake of her coming off hospice I had to make decisions regarding her Medicare coverage and procurement of a hospital bed.  The bed we were using had been rented through hospice from Doyle’s Medical Supply.  The agencies associated with Cindy’s care were displeased with Doyle’s for “double dipping,” as our case manager at CCCI called the situation, which caused the “Scottish” in me to look for alternate solutions.

Under a private program one could rent a bed from Doyle’s Medical for three months, then pay a buy out price, or rent the bed for a full year to own.  Having been placed in a hospice program, Medicare instead paid the rental for the bed we used for 55 months.  The “double dipping” that irked our case manager and others involved Doyle’s Medical getting paid for the cost of the bed many times over through Medicare, then seeking to charge us directly under their private rental guidelines.

Unhappy with this arrangement, I initially went with an offer from a friend in town to use a hospital bed she owned for as long as needed. The problem with this solution was the inconvenience to Cindy of breaking down one bed and putting up the other on the same Thursday.  As we grew closer to Thursday I grew uneasy about this solution, pinching pennies (hundreds of dollars actually) when I should be putting Cindy first.  Then on Wednesday, the day before the switch would be made, Cindy came down with a fever.  That convinced me to buy out the bed already in place from Doyle’s Medical, so as not to disrupt her.  That is when this post started percolating in my mind.

I “compromised” a little on costs by using the gel mattress our friend could provide, in lieu of the alternating pressure mattress I would otherwise buy out from Doyle’s.  That led to colossal misfortune.  By Friday a large red area appeared near her coccyx and by Saturday Cindy had open sores.  I called the VNA to come in for a visit and bought a brand new alternating pressure mattress from Amazon.

The irony in this is that Cindy’s open sores may place her back on Medicare supported visits from the VNA, though hopefully we can get her wounds closed up soon now that I have her back on the right mattress.  I fancied Cindy’s lack of skin problems over these past few years was due to my attentiveness: the diet I provide, the outings in the sun with the stroller and the immediate treatment of small red spots that occasionally appeared.  I was shocked and humbled to see how just one and two days of being bedridden on an ill-suited gel mattress could deteriorate the skin.

Other caregivers beware!  In Cindy’s advanced state of deterioration I know her skin heals more slowly than for most of us, but good grief!  Even if you anticipate yourself being bedridden for only a few days an alternating pressure mattress may be one of the best purchases you can make.  The hospital bed I will try to donate to somewhere needed when this is all over; the mattress and motor I’m keeping. You just never know.

The Scottish in me insists upon providing one other lesson.  I bought the new alternating pressure mattress and motor from Amazon for $51, just a fraction of the cost for buying the hospital bed and something I was glad to do.  Doyle’s Medical had offered a buy out price of $90 for essentially the same mattress, except we already had used and rented the motor for 55 months.  Read those numbers again and determine how you may want to include or exclude Doyle’s Medical Supplies from your own caregiver strategies. 

The VNA provided a “comfort pack” for Cindy when they placed her on hospice care.  The pack included medicine deemed necessary to comfort a hospice patient during the final decline, with everything from suppositories to morphine.  I only use lorazepam, an antianxiety medicine that also helps to combat seizures.

Cindy continues to get very mild seizures at the rate of about every three months.  One strategy for keeping them mild has been limiting sugar and caffeine in her diet.  Another strategy has been playing guitar or reading to her when she appears agitated.  These strategies enabled me to use lorazepam sparingly, when she seemed most agitated, with the minimum dosage of 0.25 ml suggested by the VNA.

Eventually I began to give Cindy lorazepam every evening before bedtime, even without signs of agitation.  This was a preventative measure for both of us, since playing guitar or reading to her in the middle of the night would have been detrimental to my own health.  The minimum dosage of 0.25 ml continued to work at keeping her calm at night for years.

In the months leading up to Cindy being removed from hospice, one tactic suggested to keep her on was to incrementally increase the lorazepam dosage up to the normal level of 0.5 ml.  I increased the dosage only to 0.3 ml; as long as that keeps her calm at night I will not increase the dose further.  Another tactic suggested was to give lorazepam regularly during the day, in addition to night, particularly to make her more comfortable during her range of motion exercises.  The previous blog post explained why I do not follow that suggestion.

I am neither pro nor anti medicine.  Medicine can be the only solution to a health problem, but in some cases risks side effects that then calls for more medical treatment.  I will choose medicine as the best way to remedy a health problem, but never as the easy or most comfortable way.  “Harder,” less comfortable means of calming Cindy by reading, playing guitar or simply holding her hand have no potential side effects, while increasing the activities and intimacy we share.

Why not do both medicine and calming activities?  Lorazepam calms Cindy to the point of being sleepy, less perceptive.  Besides the fact that I want muscle resistance when doing her exercises, activities like reading would hardly register with her when sedated, if at all.  This is another example of choosing quality of life over palliative care.

The next and last post in this series addresses the concern voiced by some as to whether there really remains a quality of life to maintain.

Note:  I feel like photos of Cindy in the present sort of invades her privacy.  I will continue to provide photos of Cindy or us enjoying our quality of life in the past.

Patients admitted into a hospice program have been diagnosed with a terminal illness.  Palliative care to make the patient comfortable then replaces curative treatment.  As we neared the time for Cindy to come off hospice, my efforts to maximize her quality of life conflicted at times with the views of nurses and aides regarding her palliative care.

Cindy the hiker weighed around 115-120 pounds; Cindy the mother at her heaviest weighed around 135-140 pounds.  Her weight while in this final stage of dementia must be well under a hundred.  Though measurement on a scale is no longer possible, the hospice nurse has inferred her weight loss for the past few years from the shrinking measurement of her biceps. That was the last indicator of decline being used to justify keeping Cindy in hospice.

As Cindy’s emaciation became the reason for keeping her in hospice I responded by inserting more calories in her diet.  We basically eat the same foods (admittedly, I take bigger bites), with my brain health soup and brain health smoothie serving as our main staple.  To Cindy’s daily diet alone I added a granola bar, fruit bar and Ensure.  That apparently did the trick of halting her shrinking biceps and there was no longer any measurable justification for keeping her in hospice.

This feeding strategy for Cindy was questioned based on her occasional coughing fits.  Since people advanced in dementia are supposed to lose the interest and ability to eat; there was concern I might be force feeding Cindy, which would be against the spirit of palliative care.  However, I experienced what a person with advanced dementia refusing to eat was like with my Mom and I rely on this memory to determine when Cindy has given up eating and by extension the will to live.  I have not detected that happening yet.

I spend 3 ½ – 4 hours each day feeding Cindy as her focus on eating declines.  Adding extra calories to her diet added to this time burden from feeding her.  The quality nutrition of her preexisting diet contributed to her will to live for so long, I do not believe the added calories does anything to further that.  Ironically, now that Cindy is out of hospice I am shifting back to her original, high nutrition diet.

I share this to emphasize what is important in your loved one’s diet.  I know the nutritional content of Meals on Wheels and other diets for the disabled or elderly.  They claim to be nutritious while at the same time being convenient to prepare or eat.  This is an accurate claim when compared to any fast food diet, but not in comparison to ours.  Our diet is my own concoction based on brain health research, but perhaps most closely resembles the well known Mediterranean diet.

Another important element of our diet is food that requires chewing.  The importance of mastication for brain health has been researched, but seemingly counters the spirit of palliative care.  When a new nurse came to examine Cindy for admittance into a different program, she assumed with obviously no doubt in her mind that I fed my patient pureed foods.  Cindy can chew and should chew food as long as possible.  The extra comfort for patients, and ease for caregivers or nursing homes, of feeding only foods to sip and swallow erodes quality of life faster.

I recommend highly nutritious and chewable food for quality of life care, as opposed to palliative care, when feeding a loved one.  If you can add high caloric intake without sacrificing nutrition all the better, though with my time already spent feeding this is where I have drawn the line.

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