define and guard your own Thermopylae or Alamo

Something unique will sustain each caregiver. I must stress this because I‘ve found no formula for success through nearly two decades.

 

I couldn’t help but notice and feel honored by the kind comments to the previous post. However I must express caution to any reader.

 

“Love” I do not believe is enough. Maybe I just avoid the word as a manly-man but I think emotions are too unstable for a foundation. I can hear Tina Turner’s scorching lyrics, “What’s love got to do with it … “

 

I always caution looking at the picture from how you feel about the person in need. Progression will change that person, especially in cerebral functions. Caregiving will change the dynamics of the relationship.

 

Caregiving can be more often like trench warfare. It is often too difficult to even see a higher purpose or meaning.

 

It’s only natural to wonder if some one can make it or be depended on. I believe the answer is more in the character of the person.

 

Not everyone is capable of a Stoic indifference to his or her own existence.

 

In a sense, you define and guard your own Thermopylae or Alamo, a stand that cannot be won. Except unlike heroic moments in time, caregiving is just trying to get through the day, day after day, knowing that the future holds only progression. 

 

Even more difficult is eventually knowing your limitations. The safety and well being of the person in need can be muddled by caregiver pride and or hobgoblins of 24/7 care. Help must be a door left open not closed.

 

Every story will write itself differently. Our story was focused on raising a daughter and trying to keep a family together. MS made Patti a dependent in that story 15 and a half years ago and progressively ravaged her abilities physically and mentally.

 

For example that focus must shift with our daughter finishing junior year in high school, Patti is lost in all the college search and application mumbo jumbo. The caregiver hat needs to shift to parenting.

 

Every caregiving situation is unique.  ...  I applaud every caregiver who tries!

---------------------------------------------------------

JOURNAL OVERVIEW  NOTE:

     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era.              

---------------------------------------------------------

JOURNAL OVERVIEW  NOTE:

     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era. 

                                ---------------------------------------------------------

maintaining involvement in family life

Maintaining involvement in family life is an appropriate entry, I believe, to talk about in this post transition year.

 

Yesterday was an opportunity to include Patti in a family dinner. Sounds simple? … 4 and a half hours later that ‘simple’ task was wrapped up. <grin>

 

60% of that time was devoted to logistics including transportation, getting Patti up and dressed, changing Depends, transferring, cutting up food, etc.  I didn’t carry a stop watch but did make use of a pocket note pad.  --  Patti’s care facility is only 18 miles away, so two round trips involves 72 miles of driving out of this percentage of logistical support time.

 

Any visit home has parameters from all involved. Patti’s desire to go to bed by 7:30 PM may as well be written in stone and on the front end Megan has to get home from school and I need to juggle time and work in the late afternoon.

 

In the post home caregiving era we get out of sync with the total and absolute commitment that must be made when Patti is at home. We can juggle nothing else such as a typical daily activity like mowing the lawn, run an errand, homework etc. … And Patti after a year in a care facility is accustomed to constant and fresh staff attending to her and her needs and wants.  …  These “different worlds’ we’ve all become used to living in can take some adjustment when we are back together. Instant adaptation is more challenging for Patti who as a result of MS progression is easily confused and frustrated.

 

Maintaining involvement at home is a gamble. I roll the dice because I believe it is good for everyone and I hope they don’t roll up showing craps.

 

Putting Patti to bed less than 30 minutes after she left home, she could not tell me ‘what’ she had for dinner, nor ‘where’ she ate dinner, nor ‘who’ she ate dinner with. MS has destroyed her short term memory. I can only hope that in the morning that her evening of family time has slipped deeper into longer term memory and she may remember.

transfer to vehicle

Until recently transferring in and out of a car has been a blessed enigma to Patti’s MS progression. That quirk has enabled her with opportunity.

 

Sadly over the last several months her ability has been fading. Increasingly attempting to transfer to and from a wheelchair and a passenger car places both herself and anyone helping her at risk.

 

Unlike a bedroom or a shower no Hoyer sling lift, or Posey belt, nor are multiple attendants of much help in the confined space and limited opening of a car door.

 

Loss of this talent for transferring dramatically changes Patti’s access to houses of family, friends, and the outside world of restaurants, movies, and more.

 

Tuesday I spent nearly an hour unsuccessfully working with Patti, and her physical therapist trying to safely transfer Patti to and from her wheelchair and our family car. We tried transfer boards and Posey belts. We tried front vs back seats, and left and right sides of car.  We exhausted all logical ideas and devoted time to thinking outside the proverbial box.

 

For months I’ve wanted to blame anything except progression. However, every symptom and issue has been systematically isolated and treated. Accepting progression is more difficult from the outside looking in. In reality Patti is unable to participate in any other transfer such as to bed or shower chair, etc.  It really was amazing that her ability to transfer to a car remained as long as it did. (In fact she still can somewhat transfer ‘out of’ the car to the wheelchair – just not ‘into’ the car. MS is always strange in its manifestations).

 

Whatever, the bottom line is for the consistency of Patti’s safety and the safety of any one attending her we must enter a new transportation era if Patti is to be able to dependably experience the freedom of opportunity.

 

This of course may seem odd that we do not already own a vehicle with a lift or ramp. However neither house we’ve owned has ever had a ramp or “visible” ramp. In the past Patti never wanted such things. She “could” transfer therefore she “would” transfer. In days of long ago, she 'fought' progression however she could even if irrational.

 

Until I figure out something involving a wheelchair accessible vehicle at least I have the physical strength and “can” still lend her a hand and wrestle her in to our car and the opportunity for adventure.

 

There's an appropriate line from a poem by Robert Burns, borrowed from a song of the dawn of time in the Scottish Highlands: (today butchered by drunks on New Year's Eve as Auld Lang Syne <grin>)

 

“… And there's a hand my trusty friend!

And give me a hand of thine! …

For days of long ago.”

Drifting

Basically the past year of transition has been followed by a year beginning with a sense of drifting. Home caregiving was an anchor in many ways.

 

Maybe for no reason except that I labeled it a “transitional year” the past 12 months had a focus. Yet home caregiving was intertwined with daily existence for so long its removal leaves behind a maze.

 

Now I find myself doing something and wondering why am I doing it that way? So many little and big details of daily living and planning evolved to accommodate home caregiving. Past the transition is uncharted water.

 

Recently three topics have kept my attention:

 

RETURNING TO HOMECARE??

Over the last month or so I’ve raised this thought of the possibility of Patti returning to homecare with facility staff, and Patti’s doctors. They stare at me as if I might need admittance to a mental facility.

 

I’m always directed back to the universal medical opinions of Patti doctors, neurologists,and visiting homecare professionals that Patti should have been in a 24/7 care facility a couple years before I ever raised the white flag on homecare.

 

What I see that is positive in both Patti’s quality of life now and that I even have time in my life to think about it - is BECAUSE Patti is in 24/7 professional care.

 

COGNITIVE REHABILITATION

Even the NMSS labels the success of such programs for MS as “mixed results”.  And ‘mixed results’ is not the kind of endorsement medical insurance invests thousands of dollars into for rehabilitation for a progressive problem. Optimally such rehabilitation is designed following a brain injury rather than a progressive disease. Patti’s neurologist and doctor were not optimistic.

 

So like many times before I create what I can. Learning whatever is available and customizing that for Patti. Bocce was a prime example of an experiment in home made cognitive rehab.  

 

WHAT IF?

Preliminary Results Are in for 16-Year Follow-Up of Betaseron Study

"To date, patients … in the pivotal trial are more likely to report continued ability to walk …”  “the mortality trend among patients in the placebo arm appearing to be threefold different than that of patients receiving Betaseron," The full report will include data on functions such as memory, attention, and reasoning, …"

This will always be a sore topic for me. Patti’s neurologist fought nobly and desperately to have her included in those original “pivotal” Betaseron trials. 

 

Berlex the drug manufacturer rejected her from the trials. They wanted people with the mildest and least noticeable MS symptoms in those original trials. They were stacking the deck for approval. Too much was at stake. Those original trials were as much about money as about MS. 

 

Once the drug was approved Patti got a letter from Berlex assigning her a lottery number and informing her how wonderfully Betaseron could help her slow progression. (Even though they had rejected her earlier when she was even less progressed.) The cruel twist of fate wasn’t done. Our medical insurance would not approve Betaseron because Patti had been rejected by Berlex for the Betaseron trials and that remained in her records.

 

Yes I know this is negative energy, I should instead be happy for those people Betaseron has helped.

Bocce

Finding a game to play with Patti is a puzzle in itself. Visual and physical impairments are compounded with intellectual symptoms of attention span, memory, and cognitive challenges.

 

You can intermittently include her in a game you are playing with others. You can play a game for her. The challenge is to play WITH her in a game she can participate in fairly

 

This past Fall at the Pennsylvania Renaissance Festival I watched some characters playing Bocce. Some roving Italian ‘character’ noticing my interest and listening to my explanation for why he explained to me ‘in character’ that his friends Galileo and da Vinci claimed that playing Bocce “rejuvenates the body and mind”.

 

Some things take a while to start <grin>. Yesterday, it was 84 degrees in April so why not try Bocce?

 

The game of Open Bocce is adaptable to any environment. It’s kind of a mix of bowling, pool, and Croquet. What intrigued me about it for Patti is that she throws out the target ball (pallino). Any other outdoor game she has to be moved to some ‘handicapped’ distance from a fixed target. With Open Bocce no visible handicapping is needed. Everyone else has to ‘adapt’ to her target.

 

How did the experiment work? It was unquestionably “rejuvenating”! I had to finally call a stop to the evening or Patti would still be playing. <grin> It was great to finally see her fully participating in and enjoying a game on her own. Winning straight out was an unexpected thrill for her.

 

By her throwing out the pallino she basically sets her optimum range and angle of throw. Because of MS vision it may not always be straight, and it may change. We made a minor modification by making the able-bodied people sit down to throw with their weak side hand which is more difficult than you can imagine. Competing against someone who lives in a chair and has been living with MS for 19 years, you quickly discover that as an able bodied person you are in trouble. <grin>

 

The great thing is all you need is a patch of ground and a bag of Bocce balls.

wondering about the causality of the paths we all travel

It is bizarre how one spontaneous event in time can seem to pull back a veil on another time and place and leave me wondering about the causality of the paths we all traveled to get here. It probably would be fascinating to sit and ponder the Metaphysics of it all if I had the time.

The following note is just one of those special moments triggered by Patti’s sudden decision to want to be in the MS Walk this past Sunday. Without that decision this past time and place would not have been shared. It is a special MS story and was accompanied by an extraordinary donation.

……………………………..

Dear Patrick,

In 1982 when I ran the Boston Marathon. I had worked so hard to qualify--and that is a whole nother story. Anyway, that year the MS society asked runners to run for them, so I worked for sponsors. I badgered everyone that I knew into sponsoring me--and you know I can be persistent when I want to.

I was taking care of a 23 year old, who had an incredibly bad case of MS. She had nystagmus, was nearly blind, and was highly verbal, so she could help me try to understand how it was for a young woman to be caught in her body. For example, once she talked about trying to date another disabled person (her friends thought she should be 'fixed up'--and how she would never do that again)--she said, "We were just too helpless".

She had long dark hair, and also was a poet. I cannot describe how cool/creepy it was to have her recite her poetry by memory while she looked at you with her nearly sightless eyes that quivered.

I was so taken with her that I tried to write an article for publication that included her poetry. I sent it around to many places--but now I am more aware that it was poorly referenced etc., and it was never published.

Anyway, that year, when I ran Boston, which may have been the high point of my life, I earned around $600 for MS. I will be walking/running with you in spirit as you push Patti along--I am tearful when I think of teenage Megan and Patti's elderly parents marching along.

Tell Patti: You go girl!

PATTI MS IXX / MS Walk

The “MS Walk” is probably the public event most associated with Multiple Sclerosis. Believe it or not, in 19 years of living with MS Patti has never participated in an MS Walk

 

For reasons only Patti understands, early in the week, Patti got it into her head that she wanted to be a part of this year's walk held yesterday.

 

With no more than a couple days notice I emailed friends and family of Patti’s wish. We extended an invitation to join a team and I asked people if they could kick in $5 or $10 bucks so Patti could end up with an MS Walk t-shirt out of the adventure if she raised $100.

 

I am still humbled by the response. In just days, our team of zero grew to 10 and donations have been overwhelming. Patti could end up with an NMSS wardrobe <grin>. I will label Patti’s MS Walk sweatshirt with the names of her team and supporters in indelible ink.

 

Multiple Sclerosis has been the major obstacle to participation.  The MS Walk is not a common forum for those with MS. For example, I did not see anyone else in a wheelchair or even noticeably effected by symptoms of MS.

 

Something was ‘in the air’ both Sunday and in the days leading up to Sunday. Living with MS isn’t usually associated with such an upbeat memory. Family and friends ARE medicine!

I am genuinely at a loss to capture my feelings about what happened this week. It’s still overwhelming the support of family and friends. I just find myself mumbling that "I’m humbled."

 

Asking Patti Sunday evening if she had any words of wisdom after the MS Walk and 19 years with MS  … “MS is a miserable disease. MS still sucks. Tell everybody 'Thank You' I had a great day and I just want to go to bed!”

catharsis

MS unpredictability still amazes me after all these years. A week ago Patti napped for 4 out of 6 hours of a visit. Yesterday she could have been the Energizer Rabbit going for over 8 hours and never considering a nap.

 

Anchoring the day we attended a matinee performance of “West Side Story” at our daughter’s high school. Performing arts are challenging for Patti to see unlike the mega screens of the film arts. However Megan’s high school productions are more off-Broadway in spirit. Action is designed to spill into the seating creating an opportuity for Patti.

 

The able bodied avoid wing seats because they are not center view. The angle of view doesn’t matter at all to Patti proximity is the only issue. When action does spill into the audience it will come off stage right and left; therefore wing seating will be nearly interactive.

 

Outside of the unforgettable Leonard Bernstein and Stephen Sondheim music, Patti’s MS symptom of visual impairment restricts her to the blur of colored lighting when the production was on stage only. Fortunately, most of the big numbers involved action both on and off stage. It was fun to watch her stare, slowly process what was happening, and erupt in mega smiles as Sharks and Jets rolled around the floor fighting at her feet and beside her chair, even tucking her feet under to avoid taking sides <grin>. I had transferred Patti into the stage right, front row, aisle seat and as the stage right aisle was an alternate exit and entrance she had cast around her her for much of the play, ending with Officer Krupke looming directly over her for closing curtain bows.

 

Accessibility is more than the little blue and white logo. “Living with MS” we have learned to know what probably will work and try to create the best of possible situations. Broadway is not going to work for Patti. Amateur productions are more ‘user friendly’.

 

Theatre is about catharsis. We all need it. Was it a catalyst in her extraordinarily successful day? Who knows? All that is known is that the hours, days, and weeks of hard work and effort by the cast and crew of this one production of "West Side Story" enabled one person to escape Multiple Sclerosis for a few hours one Sunday afternoon. That is priceless. 

the Internet still simply feels magical!

Experimenting with and experiencing journals this past year has been a constant reminder that we are not alone. Though the specifics of our story may be unique, the Internet has once again soothed that fear of being isolated.

 

The comfort is so real sometimes I want to reach out to touch but the true spirit of the Internet community is so amorphous that the plastic ‘temple’ seems almost comical.

 

Millions of Americans tune into weekly survival shows for an edited, attention-span, friendly view of people facing challenges. While within neighborhood blocks or even doors of every one of them are anonymous families fighting for survival 24/7 with no safety nets. Caregiving and disabling disease over time seem to spin a cloak of invisibility.

 

The Internet enables contact, communication, and sharing. I’m sure there probably is some kind of psycho-babble book explaining all this available through Dr. Phil or Oprah’s Book Club. Personally the Internet still simply feels magical! (Thank you Al Gore!)

Their Bugs Are Worse Than Their Bite ???

“…many diseases long believed to be noninfectious (such as multiple sclerosis) may in fact be attributable to microbes contracted from animals. …”

Their Bugs Are Worse Than Their Bite

By E. Fuller Torrey and Robert H. Yolken Sunday, April 3, 2005 © The Washington Post Company

MULTIPLE SCLEROSIS NEWSLETTER / AVONEX WARNING

MULTIPLE SCLEROSIS NEWSLETTER  |  WEEK OF APRIL 4

Health News Headlines

MS Drug Warning

Some folks with MS swear by the drug Avonex. Now a rare -- but dangerous -- side effect should make patients watchful:

Liver Injury Warning for MS Drug Avonex

 

Editor's Picks   

 

Montel Williams Knows Talk Shows -- and MS

Many of you have shared your stories about MS and its role in your life. Now hear his.

Omens and talismans

This morning a large red tail hawk sat on a guard rail watching me approach while driving an isolated stretch of back road,. (I sensed as if it was waiting). I slowed to a stop, rolled down my window and we just stared at each other only feet apart. It was eerie but also felt transcendental. It certainly was unusual.

 

Driving away I watched ‘Apollo’s messenger’ through my rear view mirror turn its head to follow my departure then launch itself skyward. 

 

Omens and talismans are mythology and folklore; at least that is what the rational side of my brain says.

sede vacante

Following rainfall that rivaled Ivan, it seemed a perfect day to pick Patti up for a day at home. <grin> The adjacent pictures do not normally have waterfront property. The stone bridge is actually over a small stream that engorged with rainfall has decided to surround the bridge and lay siege.

 

Patti’s visual impairment prevented her from viewing nature at work. Even the flooded yard flowing onto the street she could not see from the car window.

 

One day I’ll learn to stop giving Patti a choice. <grin> For her 6 hours at home she ‘chose’ to nap for 4 of them. MS fatigue is difficult for able bodied friends and family to relate to. As a caregiver on the other hand I always felt like I was in perpetual motion.

 

Today’s homily at Mass talked about the Papal selection stage known as ‘Sede Vacante’ (the empty chair). Unlike the immediate transition of succession in secular government and leadership, sede vacante designates a time to recognize and accept absence and transition in our lives.

 

It got me thinking that disease and disability at varying levels also create a version of an empty chair, or a 'different chair' in our daily lives. Yet our culture is to rush forward, get on with your life. Creating time to recognize and accept transition is not a bad idea.

a basket of medicine

Medications place the home caregiver in a peculiar role. After a year of observing how a care facility deals with daily medications vs home care I’m struck by the ‘professionalism’ demanded of the home caregiver.

 

Medical and legal requirements dictate who can handle medications in professional environments, including training and education.

 

Yet in home care it is just taken for granted that the caregiver has their act together. The only training I ever received was a 20 minute session on how to give intramuscular  Avonex injections.  Years before that when Patti tried Calcium EAP as an ‘alternative medicine’ treatment, I had to give her weekly intravenous injections with no training.

 

When symptoms of mental confusion first appeared Patti’s doctors just expected me to remove her medications from her access and take over. Intuitively, because you are protecting the person in need, you create your own customized system of checks and balances. A degree from the “school of hard knocks” is usually the only medical training.

 

***(With 3 cats, I guess I could also consider blood loss and scars from “giving pills to cats” over the years as a qualification. <grin>)

 

Daily prescriptions as in the quantity pictured demands more than just giving someone a pill. Certain meds are

…to be taken with food

…while others should be taken on an empty stomach

…or at specific times of day.

A caregiver has

…to balance the timetable of refills

…renew prescriptions

…find a way to pay for

…and pick up medications.

A caregiver has to research and remember which OTC medicines are in conflict. One cold remedy may contain a less compatible ingredient than another name brand.

 

I think home caregivers do an extraordinary job with this responsibility. The pictured basket of prescription bottles might seem innocuous, or at worst tedious. Looks deceive.

Life has to have unknowns

Home for the holidays and at family gatherings with extended family and friends, caregiver antennae has to be on high. Unlike a care facility the safety net is missing, and Patti is not always what she seems to be.

Playing with the camera over Easter weekend, I captured an interesting sequence. The following pictures are taken only seconds apart. They catch facial expressions related to symptoms of attention span, focus, & awareness fairly well and demonstrate how difficult those symptoms make it for someone to ‘read’ Patti or interact.

Patti was watching TV while I was making lunch. I had asked her, “What are you watching?” The pictures catch her attempting to process the question and answer. She was unable to offer a response. (Remember the answer is on the screen 2 ft away and in panel 3 she even glances in the direction of the screen.)

The sequence ends as often with her moving closer and looking at me as if I just materialized out of thin air. (As a fan of Grade B horror films this used to unnerve me and I would always turn to look behind me. ) 

In some situations she just forgets. In the worst case scenario, frustration boils over into a disruptive outburst of lability. 

Like most MS symptoms this is inconsistent and therein is the problem in itself. Someone having a lucid conversation believing Patti appears ‘fine’ could leave Patti unattended. Unattended at Patti’s level of disability is “at risk”. In the blink of an eye symptoms can change. The Patti that appeared lucid and conversational can instantly become as confused and unaware of her surroundings as when I asked her the simple question,”what are you watching.”  

As a caregiver you don't want to loom over a person and yet you want to encourage interaction. I long ago got tired of people talking to Patti through me like she needed a translator. I find the best I can do is just keep the caregiver antennae on full power. Life has to have unknowns.

puzzle of time

Holidays seem to act like a lightning rod for memories and personal time travel for me. The leap between pre-caregiver and caregiver years somehow makes reminiscing more like working with a jigsaw puzzle than watching an old movie.

 

I’m sure some psychobabble advocate would have a field day with that image <grin>; however it is the way it is.

Sometimes a ‘comment’ ...

Sometimes a ‘comment’ can be so insightful it merits promotion to an entry. Sue’s comment touched two critical points of the transition, family help and caregiver health.

 

Things have really changed since the turn of the century.  Now we don't have the extra maiden aunts, dependent widows, or others in the home to take care of someone.  I understand the issue to go to a nursing facility.  My mother finally took my step-dad to a facility when the doctor said NO MORE; you have to think of your own health as well as his.

Comment from analeighia - 3/22/05 10:35 AM 

 

Two years ago Patti’s neurologist in the middle of an appointment turned to me and flatly put it, “This is no longer about Patti’s health. The best thing you can do for Patti is to take care of yourself and your responsibilities to her and your daughter.”  

 

Applying for a LTC (long term care) insurance policy a year ago, I learned that actuarial statistics penalize 24/7 ‘home caregiving’ as an insurance health risk like smoking or obesity.

 

Changes in the nuclear American family, in general, have certainly had a ripple effect upon home care. Then again maybe ‘the American family’ was only a figment of our culture, something that drifted in a nostalgic blend of literature, TV, and movies until you actually need 24/7 care.

 

Family, friends, and neighbors are too busy with their OWN lives to depend on for ‘attended 24/7 care’. Help and ‘attended 24/7 care’ are different worlds. Dropping by with a meal for a sick friend is a different world from ‘taking a shift’ of attended 24/7 care.

 

Progression and caregiving needs will be unique to each person. Cookie cutter formulas would be nice but that’s not going to happen. Just as needs are unique, each caregiver has unique strengths and weaknesses.

 

With MS the BEST solution is to slow progression early in the disease. Today there are multiple medicines available offering such hope.  Patti had none available to her in the early stages of MS. If you can slow progression, then caregiving needs may be of much less concern later.

 

P.S. Sue (analeighia) is a home caregiver her spouse has Parkinson's. You can find a link to their journal “A Day In My Life …” to the right or just click here A Day In My Life … Grab yourself a lime and coke and visit. You’ll find courage, wisdom, and love.

YEAR IN SUMMARY: Part 5 of 5 Was It Worth It?

Sharing a home cooked, family dinner of corned beef and cabbage on St Patrick's Day with Patti created among many things time to mull over and wrap this up.

 

Was it all worth it?

 

"Circle the wagons" is the American frontier family spirit against all odds or any enemy. Our culture, legend, and lore teach us that is what families should do.

 

Somewhere along our 15 year journey of home caregiving that 'circle' of wagons became more of a 'black hole' consuming everything both tangible and intangible.

 

The present was overwhelming and the future was chilling.

 

Patti's MS progression had created several factors that demanded attention; safety, 24/7 attended custodial care, and isolation. Home care could not satisfactorily resolve these issues.

 

SAFETY

YES! First and foremost, it was worth it for Patti's safety alone. Patti has fallen only three times in a year since being admitted to a care facility. She fell more than that daily in homecare when unattended while attempting transfers. Safety is not an issue that can be 'partially' resovled. Dangerous accidents happened such as a stove fire, or pulling a 32 inch, couple hundred pound TV down on herself. MS is not an acute fatal disease but many with MS suffer serious injuries or are at risk of worse.

 

CUSTODIAL CARE

YES! Patti's quality of life has opportunity. Total incontinence of bladder and bowels and inability to participate in activities of daily living such as personal hygenie and changing yourself or dressing is overwhelming and frustrating. She now has sensitive, professional attended help 24 hours a day, 7 days a week.

 

ISOLATION

Isolation is a prision of unimaginable loneliness. All of the above problems plus increasing memory loss and cognitive and reasoning challenges were increasingly isolating Patti. YES! Patti now has the opportunity for daily social contact both structured and informal. Unlike home care, she is not the disabled person in a world of able bodied people but among peers more like her in abilities.

 

IN CONCLUSION

For Patti's care now and especially in the future YES it was worth it! Patti is content and always has been with the transition.

 

What about Megan and myself?  ... Patti has MS, she has never had choice. Caregiving is choice, and choice always has consequences. You can evaluate decisions, but you live with consequences ............. and, also dreams.

 

"The phoenix hope, can wing through the desert skies, and still defying fortune's spite; revive from ashes and rise." 

Miguel de Cervantes

 

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: caregiving, care facility

HAPPY ST. PATRICK'S DAY

 Two weeks ago I created these for St. Patrick’s Day. Sadly the march toward Spring has left only the pictures. The recipe was simple 1) mold nature 2) spray with cold water mixed with green food dye to soak into the snow 3) let freeze over night 4) spray frozen surface with green spray paint.

Maybe the Irish playwright Oscar Wilde best explains it, “Imagination is a quality given a man to compensate him for what he is not, and a sense of humor was provided to console him for what he is.”