care facility transition

My firstmorning after surgery coincided to the day with Patti’s admittance to a care facilityyears earlier.

Howafter 22 years of spouse caregiving had I missed this extraordinary ‘coincidence’?

Whatwould happen to Patti should anything happen to me as her spouse caregiver? –was among our concerns as the dawn of the care facility era approached after 15years of homecare.

Knowingwhat we know now and because of the care facility era, the answer is … Pattiwas worry free, stress free, safe and seamlessly cared for throughout mydiagnosis, surgery, and recovery.

Thisblog was originally created to share that transitional year for Patti’s family,friends, and anyone that may one day journey down the same path.

Backthen as one entry shares an Internet search found only 3 caregiving journalsand 3 Multiple Sclerosis blogs. Cyberspace is a different universe these days.

Anywayblogs remain difficult to read in retrospect because you have to read thembackwards. So as I found myself rereading that transitional year whilerecovering, I reorganized the entries in chronological order.

Forconvenience, I have posted them as a permanent page with the tab ‘care facility transition’ at the top of this journal.

Thoseentries remain a real diary of one family’s transitional year to the carefacility era after 15 years of homecare for Multiple Sclerosis. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

“This chili is bangin’!” – MS and Speech

Every day is MS Awareness day in our story.

Enjoying some of my home made chili at home earlier this month,Patti blurts out “this chili is bangin’!” Laughing, I couldn’t help but wonderif ‘gangsta wannabees’ had taken over Patti’s care facility. Certainly none of ushad ever introduced the slang into conventional dinner conversation. Is thisthe new jargon of care facility life in 2012?

More than likely just MS Speech. Not one to write technicalentries our story of MS Speech for MS Awareness Week/Month is best told through trial and error memories we lived and laughed through to get here.

Speech & Voice Multiple Sclerosis October, 2009

"a church moment" March, 2006

... Patti cannot always control speaking volume andthe more she tries the more opposite it can become

“Horton Hears A *&#!” March, 2008

... “The frontal lobes are very important inregulating our behaviour. … People … fail to inhibit their innermost thoughtsand do not modify their comments according to the situation.” Cerebral FunctionUnit, Carer’s Support Group, Salford, UK

"Hello!You little brat!" December, 2008

... In a recent study of MS patients, … 62% reportedspeech and voice impairments

cursing and swearing and Multiple Sclerosis, oh my! July, 2009

... Cursing and swearing is different thanlanguage, activating the emotional centers in the right side of the brain,rather than the cerebral communication centers on the left.

Thou Shall Inspect What Thy Expect October, 2004

... From the National Multiple Sclerosis Society“Speech disorders are fairly common in MS. Lesions—damaged areas—in differentparts of the brain can cause several types of changes in normal speechpatterns. …Long Pauses … Words are Slurred … Swallowing Problems …”

Regardlessof whether MS Speech is a disorder, an impairment, a symptom or whatever -after 22 years of spouse caregiving if Patti calls my chili bangin’, that’s acompliment in my book!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

when more than homecare is needed Multiple Sclerosis

From Multiple Sclerosis Foundation’s MS Focus Magazine, Winter 2012(pages 43-45):

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pg 44

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pg 45

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

dental health Multiple Sclerosis

Multiple Sclerosis does not make dental care easy.

Long story made short Patti was less than cooperative at her last failedcheckup. Fortunately there is a positive end to this story.

Believe it or not there’s at least one dentist who prefers thefreedom of not having an office practice, traveling between care facilities andnursing homes.

Rather than just leave it alone he called me with a plan.

What if … he revisited after Patti had been given a dosage ofAtivan/Lorazepam beforehand, the proverbial “chill pill”. Adding me to the mixcould improve success because in the care facility era “no means no” forprofessionals, only family/POA can ‘persuade’ a patient.

Arriving I transferred Patti to a geri-chair, a recliner on wheels. I was blown away by the mobile dentistoffice set up, it had everything except musak. (Rummaging about I found a boom box and a CD of new age music and fixedthat.)

Patti (under the influence of Ativan) was a model patient and thedentist was a godsend. Patti’s dentist prefers the life of mobile dentistry. Heloves its freedom and its focus on patients.

Patti’s teeth were cleaned, polished, and cavities filled. Only thehigh speed drill which sprayed water seemed to agitate her. I quipped it wasjust the tooth fairies waterboarding her. “Little bastards” she mumbled and witha smile her calm returned.

Afterwards, we talked about new solutions because status quo is notworking. Apparently an electric toothbrush is a win-win because in a pinch itcan be used simply with water, eliminating the whole rinse and spit challenge. Regardlessof MS and all its challenges, dental care cannot be trivialized. Brushing teethis social behavior. Visiting or outings should include teeth brushing ratherthan depend on staff, remember staff can be told ‘no I don’t want to’. Thinkingoutside the box is a must.

Since it was 60˚F (15.6˚C) afternoonin February, and the geri-chair fit in our wheelchair accessible van, I tookPatti to the park in her rolling recliner for a reward before a well-deservedafternoon nap.  

Related previousentries:

a trip to the dentist (Jan 2006)

teeth brushing smiles (Feb 2009)

dental care Multiple Sclerosis (May 2010)

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

care facility cabin fever

“loneliness, helplessness and boredom are the three plagues oflong-term care”  Eden Alternative

“Don seemed to me to begoing downhill, and a couple of the staff also suggested that he wasdeteriorating. …Then the head nurse came up with a different theory and adifferent solution … Don’s got cabin fever, that’s all. … Here’s the thing. …  It only took a day or two, and Don was back tohimself again.”  Multiple Sclerosis Carer: Stir Crazy

Recently I found myself in a similar situation with Patti anddinner. She was ‘reportedly’ finishing less of her meals and just wanted to goto bed. I began moving up my arrival time to be there to help with dinner. 

One such meal stands out. Arriving I saw Patti had finished her entreand overheard her yucking the aide’s offer of her fruit cup or potato soup andthat she ‘just wanted to go to bed’.

Noticing the fruit cup was diced pears and peaches, two of Patti’sfavorites – I rephrased the question ‘would you like some cut up pears andpeaches’ with a totally different response. Of course, how could the aide knowPatti’s favorites?

Soup is a function of temperature more than taste to Patti. Hot isnot appealing. Hey we’re talking about cream of potato soup here. The cooler itgets, the more pretentious it becomes. Rolling out my best bad French accent, Pattienjoyed her ‘vichyssoise’ assisted by zee crazy french waiter.

Instead of another unfinished meal, there was not a crumb left nor did Patti 'just want to go to bed'.

“… increased family involvement is positive and leads to quality oflife and quality of care for residents…” National Institutes of Health Family Involvement in Residential Long-Term Care

If the testimonials of two Multiple Sclerosis spouse caregivers, a long term carenon-profit, and NIH is not enough - then consider that even circling sharks pauseto stress the importance of family involvement. Boston nursing home abuseattorney Bernard J. Hamill, “ensuring safe care is continued familyinvolvement. There is really no substitute for this.”

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Ouch! Degenerative Bone Disease and Multiple Sclerosis

Ouch moments intermittently dominated this past week. While Patti cannever actually tell me where or what hurts, I observed each ouch always somehowinvolved the use of her left arm either removing her coat or transferring herfrom wheelchair to bed. I say intermittent because out of 8 coat removals only3 were ouch moments while two out of four transfers to bed involved an ouch. Lookingfor common denominators, each transfer ouch was preceded by a coat removal ouch,yet each coat removal ouch was not followed by a transfer ouch.

Ouch by deduction might even frustrate Sherlock Holmes. No it’snever “quite elementary” when asking Patti is unfortunately confounded by herMultiple Sclerosis symptoms of short term memory loss and cognitive impairment.

With anywhere between half to two-thirds of those diagnosed with MSreporting pain as a symptom it would be easy to assume this is about MS. Exceptthat Patti has never in 25 years reported pain associated with MS.

In this situation the care facility era is a godsend. While Pattifell off to sleep I stopped to discuss my observations with the nursing staff.They ordered an x-ray of her left shoulder for the next day. X-ray machinescome to you in the care facility era easier than delivery pizza in the homecare era. The next afternoon I was looking at the radiologist’s report as Istopped by to pick Patti up for an outing.

On the good side the x-ray found no fracture or break, on thenegative it did reveal 'mild degenerative bone disease'.

Degenerative bone disease is commonly known as degenerative osteoarthritis. Allegedly this affects more than 20 million Americans. It’sabout the breakdown and loss of the cartilage of the joints which when workingproperly acts like a shock absorber helping the bones glide over one another. Whenbones begin to rub each other – ‘ouch’ may be an understatement.

Tylenol for pain and application/massage of a bengay type ointmentwill be the immediate treatment. Outings and such need not be compromised just adjustedto ouchless by minimizing left shoulder rotation. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

please take your medicine / MS and chronic illness

“Please take yourmedicine?


50% of chronically ill people need a better reason

People hate medicines. It’s a fact of life. As many as 50% ofpeople with chronic illnesses don’t take their medicine correctly". Euro RSCG Tonic 5.0 Survey

Isn’t it ironic that one of the world’s topglobal marketing companies Euro RSCG (representing Big Pharma giants Novartis,Merck, Sanofi, and more) gets it …

… yet between Multiple Sclerosis symptoms ofmemory loss and mental confusion, Patti especially when prescribed something ortreated with something she does not like - often tinkers with the best laidplans of mice and caring people.

When not repeatedly monitored or involved withpeople for the couple hours she is supposed to wear her braces for dailylow-load, long-duration stretch for knee contracture therapy she simply forgetsand fidgets with braces. The pads with velcro x's half way down her shins shouldbe positioned over her knee caps. As pictured and worn they accomplish nothing.

Or recently one of her bedtime medications waschanged from a capsule to liquid. Yet liquid was so foul tasting Patti gaggedor choked reaching a point of refusing to take. Intervening as her POA Idiscovered no one really knew why the change, or had ever recommended a change.Back to a capsule all is well.

Outside looking in whether medication ortherapy, how often do we see or essentially say - here is ‘your’ problem, hereis ‘your’ solution, then sprinkle it with some encouraging mantra and suggest ‘justdo it’.

An ever growing mountain of challenges riseswith progression  - who wouldn’t need ‘a better reason’ to takeor do something that at best might make you feel better than you are but lessthan you were. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

reindeer flying drunk vs MS

Memories of Christmas morning broke new ground this year with aphone call from Patti’s care facility that she had been found on the floor nextto her bed about a half hour before dawn.

After physical and neurological examination sheappeared OK and had no complaints nor remembered anything. Of course MultipleSclerosis related memory loss, Patti’s MS short circuiting of pain neurotransmittersand probable shock confounded examination.

Incoming day shift found her during 7 AM ‘observation’.Overnight shift reported her asleep in bed at the previous hour’s 6 AM check.

Nursing staff wanted to keep her up and alert,just in case (some kind of concussion protocol), and on priority monitoring andevaluation. After a couple hours – a bruise beginning to develop on her kneewas the only observable concern.

Continuing with plans to pick Patti up forChristmas Day with family still seemed the best of possible ideas.

All things considered, in fact, Patti wasfiring on all cylinders right through the day. Patti never gets up as early as7 AM and has not gone without at least one mid-day nap for at least a decade.She was beyond impressive for someone who began the day falling out of bed, participating with over a dozen family members inChristmas Day festivities .

After about the umpteenth time of pestering herif she remembered anything about how she ended up on the floor - she turned to me while riding in thevan and said, “the damn reindeer were flying drunk.”  

You got to love it!

For the First Day of Christmas, I do know thatPatti is getting the return of two bedside fall mats and that beginning lastnight her high-low mechanical style bed will be lowered to as close to the flooras possible when sleeping, about a foot (30.48 cm) off the floor.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer