caregiving IS actually part of life

Leaves fall like reminder notes. Next month will be my 22^nd anniversary as a MS spouse caregiver.

Extraordinary care needs find us in this care facility era chapter of our story; however a nursing home is never a solution just another season.

Family, in my experience, should not only continue to be ‘hands on’ involved in assisting with the activities of daily living but the driving force of the continuing spontaneity and intangibles of life.

Staying ‘hands on’ brings consistency to care. For example by transferring, preparing, and tucking Patti into her bed by myself the majority of nights each week not only is that consistent for Patti but enables me to consistently be involved with staff. Mutual training and motivation never hurts. 

"It's just like sending your kids to school and never talking to the teacher,” says Pat Kelly director of the West Virginia Health Care Association. "The team aspect is key."

Simultaneously, life is about more than just assistance with activities of daily living. Life is never routine, it’s the unexpected even challenging that gives color to any day.

Facilities, in my experience, do a good job trying however they have to program for a common denominator. Family customizes.

Since I tuck Patti in the majority of nights I try to make each visit an outing. The ‘what’ is not as important as the spontaneity.

Progression of Patti’s MS symptoms demand concessions in planning and time involved, ever adaptive is essential.

Halloween parades are a century old Pennsylvania Fall tradition. However Patti can no longer see costumed marchers in the middle of a street and prefers to go to bed long before most parades end – so we experimented by visiting parades beforehand, while they were assembling.

All in all it ended up a fun and free way to enjoy several Fall evenings. … and maybe just maybe by our presence, demonstrate that caregiving is actually part of life. 

"Creating a home filled with spontaneity is foundational to transforming nursing home culture." Susan Misiorski, Living in a Nursing Home: What Matters Most (IV)

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

cruel and unusual SOMETHING

Googling, I stumbled upon “a collection of essays about the well spouse experience and what I believe society should do about it” by Marion Cohen.

“Cruel and Unusual” (2005) is an unpublished book she “decided to make freely available”. You need only Adobe Reader, or other application capable of reading PDF files.

Not only does it provide insight to home caregiving but transition to the care facility era over her 26 years as a Multiple Sclerosis caregiver.

Time is everything for a caregiver / carer, and at 89 pages, “Cruel and Unusual” does not take a ‘War and Peace’ commitment of time to read yet on the other hand raises enough questions, shared experiences and food for thought about caregiving in our society to fill volumes.

Some chapter headings (in her own words):

WHAT CAREGIVERS DO (a kind of Care Giving 101, especially for those who don’t already know)

SUGAR-COATERS AND OTHER NON-SOLUTIONS (such as referring to the patient as “the loved one”)

NOT EVEN VOLUNTEERS (the plight and feelings of family members of nursing home residents)

THE SEX WORKSHOP (how some well spouses are seeking love and life elsewhere -- the joys and limitations of that)

… also it’s an intriguing peak inside the early years of the Well Spouse Association.

For veteran long term MS caregivers it may read like a visiting preacher preaching to the choir, but for ‘others’ out there unfamiliar with the details and stresses of long term care, “Cruel and Unusual” could be the proverbial whack upside the head - “The conspiracy of silence leads, or is tantamount to, cruel and unusual SOMETHING”.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

where geese do the flamingo

Since the care facility / nursing home era of living with Multiple Sclerosis I find myself motivated not only by a commitment to 4-5 outings per week but an effort to make each outing 'hand picked'.

With temperatures only in the 80’s we could actually try some outside time. Parks are favorites as most are wheelchair accessible and while Patti is visually impaired nature is supportive with sounds and smells.

There is something special about enjoying a ‘ciggie’ while LeTort Spring Run chased itself over rocks and under ducks.

Nature trails in general are reasonably accessible though as pictured genuine accessibility in nature takes maintenance.

Shrinking government budgets plus more volatile summer weather can make it challenging.

That was OK we had plenty to explore. A huge wooden playground, pavilions, shady grassy areas and a spray pool  – almost a throwback to open urban fire hydrants of days long gone.

While I resisted my ‘inner imp’ to just roll Patti under it – I have no doubt were it last week with 100 degree temps we would have been rolling through there like a train schedule.

LeTort Park is not advertised as “accessible”. Divided by LeTort Spring Run, an elevated pedestrian bridge (walkers only) connects to the other half of the park.

Our half was however mostly accessible or "pushable" if determined and certainly enjoyable.

All things said and done, just relaxing and watching a Canadian Goose do the flamingo was rather entertaining.

When he or she decided to try being a songbird shattering the twilight peace with a honking serenade – I’m not sure which was louder the honking or our laughter.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

holiday caregiving: visiting long term care

Holidays are practically synonymous with visiting family and friends. When visiting a care facility or nursing home, physical and or cognitive challenges are part of a visit; hey it’s OK to be unfamiliar. Not everyone is a caregiver /carer.  

Bearing gifts can provide both a comfort level for the giver and anything from fun to pampering for the receiver. Just remember care facilities are not private homes so if you are not familiar with their protocols call ahead and ask.

If I were to open a gift shop for visiting … “care facility gift shop suggestions”. 

Don’t get too focused on gifts having to be objects. The best gift of all is time.

Bringing a couple cups of real hot chocolate with 'the works' could rival Santa coming down the chimney.

If there are dietary concerns, most coffee shops offer a range of sugar-free, dairy-free, etc options to go. Depending on abilities, you may need to transfer to a sippy cup but still you’ve done good!

Bring something to facilitate interaction, for example pictures, holiday cards, or a game. Props can only help when memory loss or cognitive impairment might challenge conversation alone.

Family pets always get left out of holiday activities; if you own a sociable pet bring them along. Call first, but most facilities welcome pet visitors. Don’t be offended if your pet gets more attention than you.

An outing could be a treasured gift. Towns small and large are decorated for the holidays; many communities have drive through illuminated displays. If you are unfamiliar with transferring someone to a passenger vehicle, just ask. Facilities are glad to help you if you can be patient. … or you can always splurge and rent a wheelchair van or hire an accessible taxi for a couple hours.

From the comedy of George Burns and Gracie Allen … Gracie comes home from the hospital after visiting a sick friend.

(George) 'Where did you get the flowers?'

(Gracie) 'I went to visit Mable.'

(George) 'Yeah, so?'

(Gracie) 'WELL, you told me to take her flowers!' 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

care facility era internet chatter

What in the world do blue baths or finding non-existent second floors have to do with the care facility era. Everything and you will find neither in admission brochures.

You will only find them on the blogosphere because they are the experiences of caregivers of the care facility sharing the importance of continuing involvement, advocacy and above all communication.

Barb blogging in Multiple Sclerosis Carer, The blue bath shares: 

"Don would complain bitterly that … he hated the "blue bath". 

 “I quizzed the staff … he doesn't have good enough balance any more to sit up in the shower chair … wasn't safe; he might fall.”

“… tracked down a high-backed reclining shower chair … on trial for the past week … nurse said they just wheeled him in and left him to it … he was refreshed and relaxed and very happy with it.

(if the nursing home will not purchase one) …then I will purchase Don's own. … You can't put a price on dignity." 

Sarahsue blogging in "A day in my life",  Today….right now……that is the time!  

"I am learning to help Jack wait.........and waiting is difficult

I am also learning to judge what is fact and what is supposed fact.

Sometimes I get a call from Jack about a problem and after I drive 10 miles to the facility, he was mistaken, and greatly embarrassed. Helping him through these painful times is just part of loving your spouse.

Most of all I am learning that showing LOVE is understood and communicated without any barriers in the mind. The brain can be a broken machine but the love cells still function."  

In the care facility era the caregiver is now part of a team. Whether Multiple Sclerosis or Parkinson ’s or any multitude of illnesses or disabilities a patient’s ability to communicate is affected. Successful teams are fueled by communication.

Recently a reader forwarded me an excellent link and well worth the read for an insight into the communication training of nursing staffs.

Nursing Fundamentals Communication Skills 

Needs and hearts are only part of the circle of caring.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Bubba Ho-Tep

Patti laughs so hard I have to hit the pause button before her Multiple Sclerosis related dysphagia triggers one of those “I know I am not choking but it sure feels like it” moments.

What are we watching? A movie about a nursing home!

Bubba Ho-tep (2002) comedy/horror. The short and quick of it: Elvis (Bruce Campbell) and JFK (Ossie Davis) are both alive and in a nursing home where they battle a soul sucking ancient Egyptian Mummy.

Forget poignant or sappy this story is so off the wall it is just what the doctor ordered – laughter.

Elvis: No offense, Jack, but President Kennedy was a white man.
JFK: They dyed me this color! That's how clever they are!

Living in a care facility for 5 years now due to MS progression maybe Patti finds more “insider” humor in it than most of us, who knows? One small advantage to her memory loss is that watching it is always fresh and full of laughs.

Elvis: Ask not what your rest home can do for you. Ask what you can do for your rest home.
JFK: Hey, you're copying my best lines!
Elvis: Then let me paraphrase one of my own. Let's take care of business.

A Caregivingly Yours ‘shout out’ to Bubba Ho-tep

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Mentally Ill A Threat In Nursing Homes?

“Over the past several years, nursing homes have become dumping grounds for young and middle-age people with mental illness …”

MENTALLY ILL A THREAT IN NURSING HOMES

Now that was a helluva head line to read especially if you have a family member or friend living in a 24/7 care facility.

Reading on and learning that a woman with Multiple Sclerosis and dementia started a fire at a Connecticut nursing home killing 16 other residents was a vivid reminder of the day Patti while still at home with Multiple Sclerosis and the onset of her dementia like symptoms accidentally set our stove on fire.

A litany of tragic incidents in the AP story leaves you wondering about the Saturday morning fire that killed 4 developmentally disabled people at the New York State Office of Mental Retardation and Developmental Disabilities group home in Wells, NY.

The AP story offers several reasons from closing of mental institutions to the business of filling rooms at nursing homes.

I would propose two others. First aging home caregivers, a mentally disabled adult may have been a mentally disabled child. Parent caregivers may have died or can no longer care for them physically and/or economically. Second a failing health care system with far more have nots than haves.

Caring about people can never be about warehousing people whether they are frail and elderly or disabled and young.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

caregiving: nursing home compare

Today the Centers for Medicare and Medicaid Services (CMS) unveiled their new 5-star rating system for nursing homes and care facilities.

NURSING HOME COMPARE

Exhaustive information has always been available through CMS however, this works much like the more consumer familiar restaurant or lodging 5-star systems.

After checking it out this morning, I must offer applause for user friendliness and simplicity.

However, I also must also caution that searching and deciding on 24/7 care is NEVER simple. Certainly use this new tool as a start.

Then visit, visit, and visit again. Your impressions and what you actually see and feel is far more important than data. Care is always about people.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

nursing home care for individuals with Multiple Sclerosis

“Hi Patrick!
Our friend has MS and has been in a so-called care home for a year now,

• they never get her out of bed
• When admitted her wheelchair was taken for "health and safety" due to her cognitive deficit and fears that she would go out and get lost, or drive into things.
• cognitive state is now unbelievable, mainly we think because she gets absolutely no stimulation
• she effectively lies in solitary confinement all day
• nothing to do and no-one to talk to without even the ability to read (sight loss and now complete loss of any manual dexterity).

We all live at a great distance, and can only visit once a week.
Physio has denied that the contractures are due to failure to mobilize her at all, and say it is because there are brain centers which normally prohibit contractures which get knocked out in MS (?!) Whose brain are we talking about here!”
My gut reaction is to kick down doors and bang heads. While I might feel better that would not help your friend in need.

Multiple Sclerosis care is more often than not an anomaly to most care or nursing facilities. Whether management or staff, few have any experience.

When family and friends cannot be an active part of the transition your wealth of personal background and experiences is lost to the staff.

MS cognitive impairments prevent a patient from providing dependable medical and care history. Too much becomes dependent on evaluations.

In the US, care facilities are required to offer regular patient Care Plan Reviews. In Patti’s facility this is scheduled every two months. Department heads of nursing, nutrition, physical therapy, social services, and activities sit down with patient, family and or designated medical advocate.

The best resource I have found is the Nursing Home Care of Individuals with Multiple Sclerosis: Guidelines & Recommendations for Quality Care
“... was developed by the National Multiple Sclerosis Society (NMSS) to provide guidance to clinicians and administrators of long term care facilities that are seeking to develop more effective care plans to 1) manage the unique set of clinical conditions of their residents with MS, and 2) maximize the quality of life for these residents. …”
I introduced it “for the record” at a Care Plan Review.

MS education and re-education is necessary and not just for John Q Public, even medical professionals have little experience.

Contractures and physical therapy is a horse of a different color. Frankly I was surprised when Patti’s facility began using a SoftPro Static Gel Knee Orthosis to try stretching her legs since such treatment is still being pioneered in Scottish MS studies. Someone was on the ball. For all I know the booklet caused them to actually look for MS research with physical therapy rather than try more traditional exercises in futility.

With MS progression we become the voice of the person trapped inside. If the facility cannot or will not consider the MS Professional Resource Center Guidelines you or family may have to file complaint to regulatory agency or legal action.

Caregivingly Yours, J Patrick Leer
videos: http://www.youtube.com/daddyleer
caregiving multiple sclerosis care facility nursing home