Don’t send flowers – send ME!

Have you ever been hospitalized, for even just a couple days?  Even an overnight stay can make 24 hours feel like a week!  Having a friend, friendly acquaintance or even a complete stranger stop by for a visit can seem a godsend.

Sadly, a variety of factors have reduced the number of visitors that stop by to see a family member or friend who’s in the hospital – fewer families live near each other, friends scatter to different parts of the country, many are tied down by work hours & family obligations, to name a few.

A lot of people hesitate to make hospital visits because they’re not sure what to say, maybe they rub each other the wrong way, while some folks won’t step foot into a hospital unless they’re wheeled in from an ambulance.

I am blessed to come from a community stocked with friends & pleasant acquaintances who regularly swing by area hospitals for visits; my church’s pastoral staff has terrific hospital out-reach.  With Holy Redeemer Hospital a 15-minute drive from the heart of my little hometown & other friends hospitalized at the same time, my hubster & my mother got visits from community folk who popped in because they were visiting someone else.

Hospital visits are old hat for me, with both Mom & John having major hospital stays.  Mom’s were age-related, while John was hospitalized for life-threatening pneumonia & twice for treatment of  Zenker’s Diverticulum.   Praise be, unlike a lot of people who have  conflicting responsibilities, I could be at the hospital whenever I wasn’t at work. A  brother in the area wasn’t able to get by to see Mom as often as he would have liked – and she didn’t expect him to;  like most Greatest Generation women, she looked to her available daughter -me – for care & emotional support, not her son.

Having visitors stop brings more than social benefits.  Studies show that people in nursing situations who receive visitors typically also receive better care from the staff.  As true in hospitals as it is in nursing homes.  Visitors help staff get to know patients better, they are able to alert staff that their friend or relation would like something, they are someone patients can talk to about how they are feeling.

Not to discount the social aspects of a friendly visit!  Mom could get through the nastiest of tests or boring hours knowing that someone would be visiting in the afternoon or evening.  John’s face lit up when I’d walk through the door but it was a boost to his energy to see Jeremy or someone else from the pastoral staff, to get a visit from someone there to visit another patient.

Visitors matter.  Studies indicate that the level of care received from hospital staff rises with a patient’s number of visitors.  And having regular visitors lifts the patient’s spirit, even feel pampered.  A visitor can help the staff get to know the patient as a person someone who focused on THEM & their likes.  The benefits of having visitors go on & on.  Which is why I say that friends & family shouldn’t send a loved one flowers or balloons during a – – they should send me, The Friendship Doula!

I am NOT a patient advocate, although I do suggest & can recommend some excellent ones.  My gifts & graces have a softer focus.  Thanks to Mom & John & countless friends &  who’ve been hospitalized, I am an old hand at setting up music players with their favorite pieces, facilitating facetime visits with far-away & home-bound loved ones, cheering up their rooms with photos or colorful pictures.  (Gotta give a shout-out to Holy Redeemer’s soft-hued rooms.)  With regular visits from me & mine (John), all of the advantages listed in the previous chapter can be checked off.  And once discharged, am happy to swing by for friend-to-friend visits.

The Friendship Doula – “family friend” hospital visiting services.   Don’t send flowers – send me!

 

 

Not so casual casualties of a looming direct care crisis

My drive home from a yum early birthday (tomorrow, but the weather forecast is nasty) breakfast turned out to be even meatier than my meal – intriguing listen on The Takeaway, a build on Paula Span’s 02/02/18 NY Times article, If Immigrants Are Pushed Out, Who Will Care For The Elderly.

Strange  – both the article & the radiocast  focus almost exclusively on how the crackdown affects the elderly,  yet Todd Zwillich‘s guest, Stephen Campbell, off-handedly mentions that HALF of direct care is provided to people under 65, aka the NOT elderly.

How weird that – in this situation – youngers seem a huge yet forgotten demographic.

It’s true that Boomers  increasing trip into young old age. They will need considerable support – in time.  Down the road.  BUT the worries of how immigration crackdowns & reduced legal arrivals will affect available direct care support hits youngers RIGHT NOW, whether they face disabilities as long term as cancer or as short as knee replacement.

And let us never forget the men & women returning from wars abroad, needing more & longer care than in previous engagements.

Am still stunned at hearing Stephen Campbell say, “Well, currently, according to the most recent estimates, about half the people who require long-term care are under the age of 65, but as time goes on & Baby Boomers continue to age into older adulthood, that population of older adults will require care.”

Please, excuse me while I take a moment or two to scream out in frustration:  “AAAARRRRGGGGGHHHHHHHHHHH!!

Am shocked appalled horrified to hear younger people – half the population currently receiving long-term direct care – so casually brushed aside.  Especially the seeming endless stream of young men & women returning from Iraq & Afghanistan facing a LIFETIME of care for physical & mental wounds, needing home health care.  And let us not forget the countless young lives mangled in the current opioid epidemic, which has claimed 64,000+ lives due to overdoses & left millions addicted; the recovering survivors need medical & psychological services  ~and~ often direct care support.

The impact of the immigration crackdown & reduction of  new arrivals will take its toll across all ages, from the child diagnosed with Down Syndrome to the high school athlete suffering a life-changing injury, from the NFL player entering his forties with  chronic traumatic encephalopathy (CTE)  to the 52-year old suburban dad fighting to overcome addiction.

This blog is called All Ages, All Stages because John & I do all we can to help people across the age spectrum, from itty bitties to ancients, live as expansively as possible.  The frustration we feel when older people are invisibled pales compared to my bottomless outrage at how a drop in direct care support will affect babies – tweens – teens – young adults – middle agers.  I want to howl at the moon & shriek with outrage.

My guess is that youngers are ignored because their dilemma cuts a little too close to home.  It’s easy to think of the elderly as needing home health care support;  to think of  thirty-somethings needing their daily needs met by others cuts t0o close to the bone.

Let me repeat again, NOT so casually – “According to the most recent estimates, about half the people who require long-term care are under the age of 65.”   And HOW does the link address describe the article?   “trump-immigration-policy-hurts-eldercare-home-aides.”

NO – every age of American, every demographic & every race color & creed are the not-so-casual casualties of short-sighted leaders taking wrong-headed actions, collateral damage in “making America great again.”

Gotta run – gotta go out & howl at the moon.

 

 

Immigrants & the elderly

Most people I know – well educated, middle-upper income, professionals – don’t think that the raging immigration issue affects them.  They might be passionately on one side or the other of the debate, but they don’t see it hitting home.  Their home.

They are wrong.

One of the things we discussed during Tuesday’s Radical Age Movement meeting was the impact on elder care if there is a major clamp-down on undocumented workers, the backbone of not just home care & cooking in the swank conclaves of our large cities, but also the home care of dependent & elderly people in every nook & corner of our nation.

One home healthcare provider is facing their Haitian-American nursing assistants & practical nurses losing their temporary protected status in November, told they MUST return to Haiti no later than July 2019, while other staffers – dreamers – face being returned to a homeland many never knew if DACA is not restored.

It’s no surprise to anyone who’s been in a continuous care facility or nursing home that many of the workers seem to be foreign born – statistics indicate that they account for one in four “direct care” workers.  Even more are hired directly by families, paid under the table for their services.  As the ranks of the elderly swell with an influx of baby boomers (like me) & chronic disease/disabilities replacing death, the women who traditionally provided care has shrunk due to careers or seeking better pay & benefits.

That caregiving gap has – until now – been filled with immigrants, many undocumented.

In 2005, there were approximately  500,000 immigrants in direct care; by 2015, that had ballooned to over one million.  Imagine the consequences if vast numbers of them are either unable to work or afraid of attracting ICE’s attention.

Cracking down on immigration means tearing apart the safety net these workers provide for families needing affordable care for parents who are living longer, often dealing with chronic health problems, with children who work so can’t stay home with Mom or Gran or Uncle Phil.  The impact is already being felt by the disabled, elderly & their families.

The current administration as far terminated Temporary Protection Status (TPS) for Haitians, Salvadorans and Nicaraguans.  Other nationalities are expected to follow.  America is no longer considered a safe harbor by immigrants, whether legal or undocumented.

Almost 11,000 direct care workers are here from largely Muslim countries – how does the travel ban affect them,  families denied permission to join them.  And there are those DACA members facing deportation.

If the president gets his wish & we reduce the number of legal immigrants, deport all the undocumented & return DACA eligible to their homelands, then they are not the only ones who will suffer uncertain, scary fates.  You might, too.

“Wellderly” – new one on me

Seems I’m behind the times – until  a few ago, had never heard the term “wellderly.”  AKA “old people who are in good health.”

Per the World Health Organization (WHO), many developed countries hold 65 to be the augur of elderly, while the United Nations (UN) tags it five years younger – 60!  ARE they old, or simply 60+ years in age?

 

Back in Spring 2016, Eric Topol, MD, a geneticist at Scripps Health, published The Wellderly Study that looked at people 85+ years old whose lives had been free of chronic disease (except arthritis, “which is ubiquitous in folks 70+”).

In a collaboration between Scripps Research Institute & Scripps Health, Dr. Topol & his team collected 1,400+ genetic samples from “wellderlies,” data that is now available as a DNA data set to other scientists.

Known as the Scripps Wellderly Genome Resource, it offers priceless info for comparing wellderlies to their disease-prone peers.  Its long-term goal is to uncover the mechanisms that protect these healthy 85+ year olds, that let their systems apparently flick away the deterioration that besets most their age.

Radical concept, from medicine’s pov –  focus on the healthy instead of the physically and/or mentally diseased & deteriorated.   It’s not wasted on me that these studies are happening as my Boomer generation grows greyer & greyer, with no stomach for having the longer lives that improved medicine & medical technology offers if they are devoid of good mental & physical health.

Find myself thinking of my mother, of John’s, of the awesome Anne Hyatt.  Of the three women, only Mom Murphy was a by-definition wellderly – she was devoid of any chronic debilitation until the instant she died of a massive heart attack.  Mom had problems with a torn rotator cuff that left her without the full use of an arm, while Anne had advanced dementia.

But I’d tag all three as wellderly.  Mom was limited in her movements, but she was sharp as tacks to the very end.  Anne couldn’t remember from one moment to the next the day & the date, but no one was more ready for the next moment of joy.  THAT’s the sort of wellderly I want to be as I age ever upward.

How do we get samples, do studies that nurture those traits?  Worth a ponder.

Those three ladies are my sort of wellderlies!

My #1 goal for February

Not learning how to create a spiffy blog -or- find the moola to hire someone to jazz it up.  Not to brush up my computer skills & feel once again competent with basic programs that I aced back in my corporate days, when there was an IT team backing me up & a company that paid for me to take days off to hone my skills.  Not to create a home that’s warm & welcoming to humans as well as cats.

My #1 goal is to find at least three people interested in watching sessions from last week’s AWESOME Age Without Borders Global Caregivers Virtual Summit which was so utterly utterly utterly interesting insightful informative inspiring & a zillion other adjectives I haven’t time to write out.   There are so many caregivers out there – of every stripe – who would benefit so much from experiencing the wondrous array of speakers Kari Henley served up to us on silver platters;  all we have to do is watch in wonderment.

What better place to soak them in than the community room at Be Well, where we can take in the summit’s wowness while drinking one of Maia’s coffee confections & eating Gwyneth’s Lemon Almond Cake!

Sure sign I was in pain yesterday

Thought it was Thursday. Why?  Because there were no markers through my day.  John drove himself to his part-time job (he enjoys working at a local craft & hobby store, which employs quite a few artists) & took a dear friend on a drive while I stayed home.  We don’t watch TV shows, so didn’t have them as markers.  Changed my NY Times subscription to digital, so didn’t have the print edition to clue me in on the day.

All it took for me to lose my sense of time placement was a gammy leg.  That’s all.

Envisioning how hard it would be to hold onto my sense of physical mental emotional place ~if~ I found myself without my sense of familiar home & things resting in their “proper” place, of a familiar neighborhood, of family & friends, of independent mobility, of all the layers of activity that fill even the most mundane of my days, of all I do without thinking.

For me, all it took was a gammy leg.

Holidays & dementia – think twice

It is tempting to think that Mom, Grandpa or Aunt Felicia would LOVE being surrounded with family & friends over the holidays – – in spite of having dementia.  Jolene Brackey reminded us at Friday’s Creating Moments of Joy Caregivers Conference that including them could a great disservice to everyone – especially to them & most certainly to their care partners.

Here’s my observations about the pleasures & potential pitfalls of including someone dealing with dementia to a holiday celebration, from Thanksgiving to New Year’s Eve, birthdays to reunions:

  • Understand that it creates stress for anyone dealing with dementia to be literally faced with people greeting them, “strangers” giving them hugs or (worse), saying with a big smile, “You remember me!
  • Realize that deep inside us, we REALLY want them with us over the holiday, but as they were.  We want Dad carving the turkey, Mom dishing up the stuffing, Grandma bringing her pies & Uncle Phil making his yummo green bean casserole.  At the holidays, our natural human tendency is to long for old roles.  Make sure over the holidays that you are focused on meeting their needs & not your wants, which often means doing it differently than before.
  • Keep it small – maybe even have two different celebrations, one at your house over lunch with just a few people who are focused on the person, one later – without the older loved one – at another person’s house for the whole clan.
  • If s/he always helped with making the meal, involve them in the preparation, making SURE to have an apron, a must-have in their day.  Have music playing to limit “Remember…” conversations.  Follow their lead.
  • If they ask why someone isn’t there, have a reason for the absence, other than illness or death.  Make up something, if necessary.  This is not a time for stark reality.
  • Skip the family get-together entirely.  I had a client that I took out for breakfast at her favorite diner because holiday breakfasts were bleak at her personal care residence.  Most restaurants are closed for holiday breakfasts, but Denny’s & IHOP are safe bets to be open.  We’d go for a drive & then head back to her beloved diner for lunch.  Staying in her continuous care residence would have been awful, as would being barraged by “strangers” at family events.  When she asked why her children weren’t having her to dinner, I explained they were out-of-town.
  • IF you are having a large group, get them involved in making it a happy time for the guest of honor.  Share your game plan, laying out the dos & don’ts – #1 being to NOT do the very thing that will seem most natural:  asking “Remember when...”,  sharing family photos, feeling disappointed they recognized Cousin Tony but not her own son.  Explain the importance of greeting them with “Good to see you” instead of the booby trapped “How are you doing?”  I think the idea of sending everyone a letter laying out the situation & including tips is BRILLIANT.
  • Play familiar music or her favorite songs – one family always made the event a swing fest, heavy on Glenn Miller & Tommy Dorsey.
  • Pull out collections of favorite cartoon strips.  Mom loved Peanuts, For Better & For Worse, so if dementia had been a challenge for her, we would have had those books out, remembering the different characters.
  • Have favorite nibblings available – hunger does not make for happiness.
  • Keep it simple.
  • Whether a big group or small, have a quiet room where the guest of honor can rest or get away from the hub bub.
  • Discreetly assign people to be a buddy for a specific period of time so someone is always by their side, keeping watch without hovering.
  • Make sure everyone understands if s/he can’t have any alcohol, even Uncle Bob who thinks s/he should have whatever s/he wants.
  • If not having a drink is an issue, have non-alcoholic beverages for everyone.  Maybe a non-alcoholic wine or sparkling cider in champagne glasses.
  • Keep it simple.
  • Skip church.  I can’t think of a worse thing to do with someone dealing with dementia than to take them to our church’s Thanksgiving service, which is held in a field house so the entire congregation can gather at one service.  S/he does NOT relate the setting to worship, there are WAY too many bodies & far too many “strangers” coming up, hoping to be recognized remembered reassured.
  • Once she started edging her way up into her upper 80s & 90s, Mom opted at Christmas to attend the Children’s Tableaux or the first, abbreviated family performance of the traditional tableaux.  She didn’t have dementia, but tired easily & knew that even the best time can be dampened by feeling weary or worn out.
  • Keep it simple.
  • Remember meds!  It’s easy to forget.  Make sure s/he is getting the proper meds at the right times.  Avoid potential embarrassment by being discreet.
  • The day before, send a holiday arrangement with a note that includes the reason & your relationship ~ “Happy Thanksgiving!  Love from your son, …” or daughter, friend…”  Send even if you are seeing them on The Day.  Especially powerful with women.
  • Be prepared for upset when you suggest going heading back to their residence.  Don’t ruin the moment for her & everyone else’s happy memory – tell her you’re going on a drive.
  • IF you include a loved one with dementia in a holiday celebration, know that it typically will take two weeks for their schedule to get back to normal.  Be aware of the added post-holiday stress on them, on you AND especially on care partners.
  • Keep it simple.

That’s some of what I’ve learned interacting with older loved ones, friends & clients.  For more suggestions & tips check:

Celebrating Thanksgiving with “Generation Alzheimer’s” (what a ghastly title!)

Ten Holiday Survival Tips (actually over 50)

Holidays & Alzheimer’s Families

Celebrating the Holidays with Alzheimer’s

Or google “holidays dementia”