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caring hands

 

Two months ago, doctors from the Memory and Aging Center in San Francisco wrote a Viewpoint that criticizes the rise of  unproven remedies for dementia, including Alzheimer's, saying that there is a "troubling increase in 'pseudomedicine.' Pseudomedicine refers to supplements and medical interventions that...lack credible efficacy data. Practitioners of pseudomedicine often appeal to health concerns, promote individual testimony as established fact...and achieve financial gains."

I submitted a Letter to the Editor of that journal, to mention at least one study with efficacy data for a supplement (from that same journal!), the difficulties in doing that kind of research, as described by experts, and to state that introducing a "palliative care concept" at diagnosis might help families who are desperate for solutions.  The letter was declined for going beyond the scope of the original article.

So what is Palliative Care?  In pediatric oncology, we used to think of it as a prelude to end-of-life hospice care, but it has expanded to be a supportive care umbrella.  Some teams introduce the idea of palliative care right at the time of diagnosis, even when the expectation is cure, just because the care needs are so challenging. It may be called something else, but it's a way to provide complex support.

One definition:  "Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with a serious illness. This type of care is focused on relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family."

So here's my Letter, submitted 19 Feb 2019, declined 15 Mar 2019:

Palliative care instead of pseudomedicine for dementia?

To the Editors:

Hellmuth, Rabinovici, and Miller shared their Viewpoint that many remedies are marketed to dementia patients and families without scientific evidence of efficacy; the FDA Commisioner recently voiced similar concerns (1, 2).  However, I think the Viewpoint lacks three important considerations: 1) not mentioning any published work on OTC preparations, 2) not mentioning the daunting tasks of doing academic research in this arena, and 3) not more fully addressing the needs of these patients, driven to those remedies given the current lack of disease-modifying agents, and numerous reports of failed trials.

It is curious that the authors cite papers highlighting the problems of vitamin E, widely available OTC.  Why did they not cite positive research on vitamin E and dementia, some of which has been published in the JAMA Network?

Dysken et al, in this Journal, published a study of over 600 patients that showed a positive effect of high dose vitamin E. (3) Evans and co-authors in the accompanying editorial (4) point out some issues in this double-blind placebo-controlled randomized controlled trial, but also praised the general trial design and execution. They also point out that in this study, FDA-approved memantine seemed to lack efficacy.  Of course, other studies do show different results, which can be expected in honest science.

Investigators have tried to ask questions about whether some OTC agents might be useful in preventing cognitive decline. DeKosky and Schnieder (5) discuss the daunting task of analyzing prevention data, including clever “piggyback” studies of large cohorts, in their editorial about one such publication (6).  A reader would conclude that it may be unrealistic to expect any breakthroughs soon.

So, despite the enormous efforts of clever and brilliant investigators, and the formidable tasks in doing the research (including overcoming the discouraging history of failure), where does that leave a patient or family? 

The Viewpoint suggests that patients and families need a better understanding of what doesn’t work.  In cancer care, some advocate a “palliative care” approach right from the time of diagnosis, perhaps refining a focus on quality of life, expectations, and symptom management. (7) While there are cognitive therapies and other non-drug options for dementia patients, with varying levels of evidence and efficacy, should all patients with cognitive decline be offered palliative care at diagnosis, given the harsh reality that nothing really works to “cure” or modify these diseases (8)?

R.L.

References:

  1. Hellmuth J, Rabinovici GD, Miller BL. The Rise of Pseudomedicine for Dementia and Brain Health. JAMA. 2019;321(6):543–544. doi:10.1001/jama.2018.21560
  2. Gottlieb, S. Statement from FDA Commissioner Scott Gottlieb, M.D., on the agency’s new efforts to strengthen regulation of dietary supplements by modernizing and reforming FDA’s oversight. Feb 11, 2019. https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm631065.htm. Accessed Feb 18, 2019.
  3. Dysken  MW, Sano  M, Asthana  S,  et al.  Effect of vitamin E and memantine on functional decline in Alzheimer disease: the TEAM-AD VA Cooperative randomized trial.  JAMA. 2014;311(1):33–44. doi:10.1001/jama.2013.282834
  4. Evans DA, Morris MC, Rajan KB. Vitamin E, Memantine, and Alzheimer Disease. JAMA. 2014;311(1):29–30. doi:10.1001/jama.2013.282835
  5. DeKosky ST, Schneider LS. Preventing Dementia: Many Issues and Not Enough Time. JAMA Neurol. 2017;74(5):508–510. doi:10.1001/jamaneurol.2017.0045
  6. Kryscio RJ, Abner EL, Caban-Holt A, et al. Association of Antioxidant Supplement Use and Dementia in the Prevention of Alzheimer’s Disease by Vitamin E and Selenium Trial (PREADViSE). JAMA Neurol. 2017;74(5):567–573. doi:10.1001/jamaneurol.2016.5778
  7. Epstein AS, Morrison RS. Palliative oncology: identity, progress, and the path ahead. Ann Oncol. 2012;23 Suppl 3(Suppl 3):43-8.
  8. Livingston, et al. “Dementia Prevention, Intervention, and Care.” The Lancet, vol. 390, no. 10113, 2017, pp. 2673–2734.

[public domain image above from Pixabay.com]

mohamed_hassan / Pixabay

 

Sometimes caregiving seems like living in a bubble, a little isolated from the world; maybe an old guy just becomes more aware of that feeling.  Interactions with folks just aren't as frequent for one thing, and some of the isolation is a choice (my wife used to be a newshound, and loved to laugh with The Ellen Show, but we hardly have the TV on anymore for various reasons, and because we play much more music).

I guess I became a caregiver suddenly when we were stunned with my wife's diagnosis (see my poem "Matter of Fact" via link here or above, published in Neurology) and she stopped working, now many years ago.  I became the medical care manager, the household manager, the hired caregiver manager, the power of attorney, and despite lots of wonderful help, there were and are many tasks that could not get delegated (the way a bossy old guy would have it!)

Anyway, even though her situation changed in 2018 (isn't that a lovely vague ambiguity?) the old guy had time to read a few things that were pertinent or interesting (mind expanding, though frankly, not all that practical in a nuts and bolts way).

The New Yorker piece by Larissa MacFarquhar, The Comforting Fictions of Dementia Careincludes the striking statement: "In dementia care, everybody lies." Although it's ostensibly a piece about reminiscence therapy, it explores ethical issues and touches on subjects from improv comedy to theater to a philosophical thought experiment proposed by Robert Nozick.  Kinda long, typical for that magazine of course, but an amazing read.

The Spectrum of Hope : A New and Optimistic Approach to Thinking about Alzheimer's Disease and Other Dementias is a catchy title, right?  Written by neurologist Dr. Gayatri Devi (with whom I have no affiliation), its positive attitude is tempered with a bit of realism, which made it a nice read for me.

Caregiving seemed to get more recognition in 2018.  If one does a search for caregiving reviews on PubMed.gov, there seem to be 14/16 hits that are related to dementia caregiving in English.

OK, some old guys seem to be into Twitter, me not so much, but there is an outstanding advocate for caregiving, Meryl Comer, who tweets.  She's a caregiver, an author, a board member and speaker at important meetings for caregiving, so I follow her.

Just a note about what I have outside my bubble:  I don't like professional helping videos much, they seem overproduced and I get impatient, so I wish the AARP Caregiving Tips/Hacks were more text oriented.  And Pinterest Caregiving Tips/Hacks are just too chaotic, even with my own special computer glasses hack! [check out the links above though, you might like them].

So here's to a Happy New Year for 2019!

[If you're so inclined, I did write up my take on last year's AD clinical research , "2018: Rx Failure, FDA, $2B, Big Names, AT(N) Biomarkers,"  on my companion blog, AlzheimerGadfly.net]

 

 

 

 

 

 

eokateri / Pixabay

 

Hey now!  We recently had a pleasingly sustained 25 minute conversation with a Millennial !!  Usually those conversations are measured in seconds, especially when the young person is in front of you, with a TV on (sports), music playing, trying to type on a laptop, with a mobile phone bonging with incoming texts.

Here's how it happened: we got the call during dinner, speaker phone on our end, and the conversation ranged from this Millennial's next visit, to work issues, holiday plans, a vacation plan, to a severe weather warning, even food!  One of the last topics was traffic, then it dawned on me: this person was doing hands free driving, still multi-tasking in a way, but only one screen, the windshield.  That's how we could sustain that old school way of communicating, with an oral-aural connection!

It's amazing how one can sense the engagement once the multi-tasking is pared down a bit.  So, when you really want to talk with a restless Millennial, send her or him out for a drive with a hands-free set for safety, and have them call you!  And warn them: "Text Neck" is apparently real,  cervical nerve impingement as we used to call it, from looking down at one's phone too much!

terimakasih0 / Pixabay

 

Joking aside, let's give Millennials their due, maybe trying to do too much!  Nice report about Millennial caregivers came out a few weeks ago, and here's a nice graphic from the report:

 

 

 

The dog pictured here was selected by my wife to be a companion, but he's quite a watchdog: he watches for the unexpected snack, and watches for folks that come to the door, happily jumping up to greet them.  He's not much of a threat, even to squirrels or cats.  But the presence of a pet can be a hassle for home care.

Home HEALTH (the usual label for professionals such as PT, OT, MSW and RN) required that we pen up the dog when my wife needed visits from them.  Luckily Home CARE folks (the usual label for hands on Certified Nurse Assistants or Home Health Aides) usually tolerate pets.  The dog could go on his hunt for morsels again.

He gets along with most humans, as far as we can tell, and we think we do too.  After all, my wife' parents were both born in Europe, and my parents were both born in Asia.  Our caregivers have been born in the Philippines, Eritrea, Somalia, Nigeria, Mexico and the US.  My wife worked in healthcare, in a multicultural setting, and has been welcoming to each of the caregivers.  But one caregiver couldn't deal with the dog.

Here's how that happened. We had one agency for years, and they decided to fold up shop, sending their clients and caregiving employees to an affiliated agency.  It wasn't quite a seamless transition.  Two of our main caregivers decided not to be employed by the new agency.

So we met five new caregivers over the ensuing weeks.  One came for an unusual overnight shift; she was afraid of dogs, but the dog was easy to keep in his crate all night.  She was not a good fit for other reasons, including a lack of polished competence, from what I could observe.

When that same caregiver came for a day shift a few months later, it took me awhile to recognize her, until I saw her reaction to the dog.  I had to send her home.  Then two caregivers who were a really good fit decided to quit that agency.  The agency was going to send a different replacement caregiver, but also afraid of dogs.  I said no.

Over the last few weeks, I've called four new agencies.  One never answered, even after three times, once using their 800 number.  One had a minimum engagement of 20 hours a week.  One thought that mobility issues made my wife unsuitable for their employees.  I did find one, and we met a nice young woman who was from Kenya.

I stayed for several hours on her first visit, as I had with each of the new caregivers, to orient them to our place and my wife's routines. And now the lucky dog has yet another new friend!

 

 

IanZA / Pixabay

Every pediatrician knows how useful diphenhydramine (DPH, common trade name Benadryl) can be for symptoms associated with allergies, eczema, and hives.  Readily available OTC, adults buy it for sleep because of its drowsiness "side effect", with many trade names and store brands (290 synonyms on PubChem).

It also appears on the respected "Beers Criteria", which is an extensive list of meds to be avoided, published by the American Geriatric Society, based on the work of the late eminent geriatrician Mark Beers.  This is an expert consensus guideline for medicating persons over age 65, and is evidently used in many nursing homes.

Starting about six months ago, my wife, not yet 65, started having "agitation", and her sleep was even more disturbed.  She'd been on chewable melatonin for years, and I think that did help in the beginning, but she started waking up several times a night, loud and seemingly disturbed.  I was a nursing home orderly in my youth, and this didn't seem like ordinary "sundowning" to me.

I'm not going to divulge details, but something else medical happened, and she eventually got both IV and oral meds, outpatient then inpatient for a week.  The meds maybe helped her bit, but also left her with other (seemingly "iatrogenic") problems.  The most overt persistent problem consists of repetitive movements both day and night, a side effect I saw 40 years ago while a student on a psychiatric ward (which some now call tardive syndromes).

Back to DPH, there is a dementia connection. A number of studies, one by local respected dementia epidemiologists, found links between certain meds in the DPH category and subsequent long term cognitive problems. It's well known these meds can make one "fuzzy" acutely, corroborated in an elderly rural population.

On the other hand, there a zillions of peer reviewed studies of DPH in kids and adults, for sleep, allergy, even nausea, and dealing with overdoses, in aggregate showing relative effectiveness and safety. There are not many recent studies about persons with dementia who have sleep or other issues like agitation, to see if DPH might help them, or whether it might worsen or accelerate the typical trajectory of those patients.

SO, I'm not going to give medical advice here, or details, but I am going to just write that some OTC meds come in liquid formulations (as pediatricians know) for easy titration, and might be really helpful.  Like most everything else one cannot say these meds cure anything; they might help symptoms, but EVERYONE is AN INDIVIDUAL, right?

DISCLOSURE: I do not knowingly have any investments or financial ties in any drug companies of OTC products, although who knows what I have in retirement mutual funds.  I was a pediatric oncologist, and daily confronted the issue of toxicity vs. efficacy, good effect vs. bad effects, and the consideration of long-term side effects, i.e. risk/reward with available agents that happened to have a low "therapeutic index:" chemotherapy. Here's another question for you:  isn't Alzheimer's a fatal disease?

 

 

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armoire - 1

 

Women's brassieres, an earlier post, exposed me as naive to that secret code world of female clothing.  My wife always had an attractive, professional and practical look, but little did I know how complicated a woman's wardrobe can be.  We each did our own shopping, and I would NEVER presume to buy her clothing as a present (well, I did that once, with something that now lives in the lowest drawer).  So when the time came for me to be involved in her dressing, I was frankly baffled.

Old guy caregivers want to be self-reliant, so we might have some blind spots.  Sometimes we don't even know what we don't know, y'know?  I couldn't figure out sizes, I was not good at color matching, but at least I was an ace with style ("last century mashup" is a style, right?).

All my pants have waist and length numbers (inches), which I've never found on her slacks, and how are dresses figured?  Shoes have a Euro and American system?  Just how do women figure out what to wear? On top of that, we were dealing with some weight issues, both up and down.

Thank goodness my wife and a wonderful female friend had set up an armoire (photo above), years before caregiving needs.  They did some genius things:  put things in translucent bins, kept socks and undies separate, sorted tops of the same fabric weight in separate bins (for different weather), kept slacks and shorts in the drawer below. The organization was nicely intuitive; most of her professional clothes were on hangars in the closet.

That same friend helps buy clothes when necessary, but even now she comes back with two or three sizes and other variations to try at home, "because even the same brand will change year to year."

Dress Clothes Girl Female Clothing Style Fashion image CC0 Maxpixel.net

 

So here's how sorting and buying clothes for a woman can be a cognitive test for an old guy: Yeah, you could count the mistakes, but the best score is when the old guy figures out it's all futile, and registers the shortest time to cry out for help!

 

 

 

shower chair - 1

 

The shower chair finally came!  This has seemed like a big improvement in safety, because of my wife's tendency to lean backward and to the sides.  It has a commode feature (those parts are elsewhere) with an open padded seat which makes for easier, more complete cleansing. It is very lightweight aluminum with plastic wheels, perhaps not the most durable, but we'll see.  We put it together in fewer than five minutes using the built-in tubular locking pins!  Clever design.

 

Her PCP actually put in a referral for the Durable Medical Equipment (DME) weeks ago, but the approval was for a commode chair;  I suppose that even if the doctor ordered the right thing, the clerk choices of selections was limited.  Anyway those don't usually have wheels, and aren't meant for showers.  The HMO has a primary vendor who suggested I look at their catalog online, but nothing matched what we wanted.  There was some automatic coverage through them, though I doubt 100%.

 

It's a bit tiresome (to me) how different online stores work with different manufacturers to have insipid variations in similar products. A national drug store chain with an online site had one that looked like it might work,  displaying "ships in 1 day!"  It may have, but took a week to get here.  About $150.  Later, I had to make several phone calls, download an online form, attach the receipt and mail it to another state to see if we'll get any kind of reimbursement.  You know the drill, it's only the 21st century!

 

The picture makes it seem like it fills the whole space, but it was easy to work around, and move when necessary, and seems easy to clean.

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Yeah, I look like an old guy fool, but what's new with that?

A young person in the family who is an optometrist won't like this post, but here's my quickie "hack" for computer glasses and semi-close work: get some big lens reading glasses, and simply just wear them over your other ones!

Since I need glasses for objects both far and near, I've worn "progressives," a kind of bifocal, for years and years. I need stronger correction every time I get checked. But even with new glasses it became harder to do simple home-fixing projects because of blurriness, and I could never get the right distance.  I know surgeons, dentists and jewelers use expensive binocular loupes, but wearing both sets of glasses works just fine!

Now don't put off seeing your optometrist, since they check for diseases, too, but it seems like all the chain drug stores and even grocery stores sell reading glasses these days. Of course you could get various magnifiers, too (and I've always loved magnifying glasses, monocular microscopes, binoculars and telescopes):

image CC0 from Maxpixel.net

 

 

 

Part 2: The picture may need interpreting:  I removed the glass door of the shower (the metal bracket and hinges remain), and then used a shower curtain rod (not seen) to hang a shower curtain liner.  A bathing helper (me) now has better access with the door gone.  The grab bars (vertical one almost hidden) and the bin are held by suction on the glazed tiles.  The bath stool and blue donut sitting ring (which helps in access of the nether regions for cleansing, with the showerhead on a hose) were found at a chain drug store.

Except as shown in the previous post, and a new made-for-showers LED light fixture overhead, the shower stall wasn't otherwise modified.  It's about 36" x 36" floor space (90 cm x 90 cm) with a sill that's 10 cm (4") high on the outside and 6 cm high (2.5") on the inside.  All told it cost about US$200 (LED light fixture and shower head were the more expensive items).

I'm not saying this is recommended, I'm just showing what we have used.  EVERYONE is an INDIVIDUAL.  I used to bathe my wife by myself when she could walk and stand easily, but now we have two people.

Safety issues abound with a wet slippery soapy person who doesn't move well, so consider a "sponge bath" or "wet towel" wipe down instead! If you're a professional OT person, look away now!  That stool doesn't have a back.  We're getting a shower chair as a next step. After that, we might have to lay out big bucks to remove a tub and put in an easy access, low threshold wheel-in wider shower.

(Augsburg Puppets CC0 image from MaxPixel.net)

 

My wife is a life-long Beatles fan, and we still have a boombox where we eat.  At breakfast, every morning, we play CD2 from the Beatles '62-'66 box set: the first cut, "Help!" comes on and just seems soooo appropriate! Have you listened or read the lyrics lately? Maybe it's a caregiving theme song?  Comment if you have other candidates, but this is hard to beat! (paronomasia intended)

Help! (click for a 1965 performance), lyrics per Genius Lyrics

 

(Help!) I need somebody

(Help!) Not just anybody

(Help!) You know I need someone

(Help!)

[Verse 1: John Lennon]

When I was younger so much younger than today

I never needed anybody's help in any way

But now these days are gone, I'm not so self assured

Now I find I've changed my mind and opened up the doors

[Chorus: John Lennon]

Help me if you can, I'm feeling down

And I do appreciate you being 'round

Help me get my feet back on the ground

Won't you please, please help me?

[Verse 2: John Lennon]

And now my life has changed in oh so many ways

My independence seems to vanish in the haze

But every now and then I feel so insecure

I know that I just need you like I've never done before

[Chorus: John Lennon]

Help me if you can, I'm feeling down

And I do appreciate you being 'round

Help me get my feet back on the ground

Won't you please, please help me?

[Verse 3: John Lennon]

When I was younger, so much younger than today

I never needed anybody's help in any way

But now these days are gone, I'm not so self assured

Now I find I've changed my mind and opened up the doors

[Chorus: John Lennon]

Help me if you can, I'm feeling down

And I do appreciate you being 'round

Help me get my feet back on the ground

Won't you please, please help me?

Help me? Help me? Ooh

 

Songwriters: John Lennon / Paul McCartney
Help! lyrics © Sony/ATV Music Publishing LLC

Theme for caregiving husbands?

geralt / Pixabay

 

.....
And you may find yourself...
...With a beautiful wife
And you may ask yourself, well
How did I get here?
Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again after the money's gone
Once in a lifetime, water flowing underground
And you may ask yourself
How do I work this?
And you may ask yourself
Where is that large automobile?
And you may tell yourself
This is not my beautiful house!
And you may tell yourself
This is not my beautiful wife!
Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again after the money's gone
Once in a lifetime, water flowing underground
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Water dissolving and water removing
There is water at the bottom of the ocean
Under the water, carry the water
Remove the water at the bottom of the ocean!
Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again in the silent water
Under the rocks, and stones there is water underground
Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again after the money's gone
Once in a lifetime, water flowing underground
And you may ask yourself
What is that beautiful house?
And you may ask yourself
Where does that highway go to?
And you may ask yourself
Am I right? Am I wrong?
And you may say yourself, "My God! What have I done?"
Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again in to the silent water
Under the rocks and stones, there is water underground
Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again after the money's gone
Once in a lifetime, water flowing underground
Same as it ever was
Same as it ever was
Same as it ever was
Look where my hand was
Time isn't holding up
Time isn't after us
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Same as it ever was
Letting the days go by (same as it ever was)
Letting the days go by (same as it ever was)
Once in a lifetime
Letting the days go by
Letting the days go by
Songwriters: Brian Eno / Christopher Frantz / David Byrne / Jerry Harrison / Tina Weymouth. Once in a Lifetime lyrics © Warner/Chappell Music, Inc, Universal Music Publishing Group

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charly-k / Pixabay

We pediatricians all get trained with the mantra: "children are not just small adults!"  But can dementia, more specifically Alzheimer's, turn adults into children?

The pediatric mantra means that children are vastly different than adults, with a different spectrum of disease, displaying different symptoms, along with handling drugs and surgery differently. The pediatrician's approach in clinical encounters is necessarily different than an internist's, instantly focused on a child's developmental abilities. 

I used to tell students that kids have three secrets factors in successfully fighting disease:  they are tougher than they look, their organs have a better capacity to recover, and they have parents after all.  Parents are usually fastidious in making them take awful tasting medicine on schedule or bringing 'em kicking and screaming for shots or IV's (older teens and adults?  well, you know!)

In this blog's menu page about ADL, I cite Dr. B. Reisberg's work on the Functional Assessment Staging Tool (FAST).  As I mentioned, the details have been helpful to me.  Sometimes it's published with a timeline, and sometimes with comments like "functions at a 2-4 year of age."  Now NO pediatrician can let that go without a comment!

(graphic from Ian Kremer's recent Tweet)

Dr. Reisberg and his group have also written about the concept of "retrogenesis",  how an Alzheimer patient's functional and behavioral abilities might seem to reverse the pattern of a child's increasing abilities, during infancy and childhood. Remember Shakespeare's own seven stages of man, from "infant, mewling" to "Last scene...second childishness and mere oblivion..."?

Three quick comments:  1) as a caregiver, I think the FAST observations are very useful, and I think the age comparisons provide a common frame of reference.  Of course, from my  pediatric POV I cringe (I am an old guy who started before the FAST was published, but realize it's all shorthand);  2) Sometimes, folks  speak to people with dementia as if they were children, which I detest.  They don't usually make that mistake around my wife, especially if they know of her professional accomplishments, but I guess that's an opening for a teaching point.; and 3) there are many times that my wife's verbal abilities, understanding and emotional intelligence shine through, despite her apparent stage. 

It goes without saying that everyone is an individual, and my feeling is that it's essential to honor the person, and not shortchange him or her, no matter what apparent stage might be appropriate at the time.

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StockSnap / Pixabay

WARNING: This may be "R" rated!

I admit it: I was such a naive nerd when my GF now wife and I first got intimate, (as consenting young adults of course), that I could never get her bra off!  Now when she needed help to get one on, I got really flustered and embarrassed. Who invented these crazy things?

Even the ancient Romans had "sport bras".  They were pretty simple cloth affairs.  Now there are over 50 varieties listed by Wikipedia, and can have 30 or 40 separate components, like adjustable hooks, snaps in front, adjustable straps that get twisted, and cups that look the same (to me) inside and out.  How tight is too tight, how loose is too loose, or too high or too low?

She was attending a day program, and I couldn't let her go without the proper clothes, right? She didn't seem to have that many, so how often do they need to be washed?  And how do you dry them?

When she had a female caregiver one day, I came home after a warm summer day and later noticed she had been dressed without a bra!  Was that a cultural thing (caregiver had been born in a different country) or negligence or some other factor?

I finally had to call one of my wife's best friends to get some answers. So I learned that going without a bra is not really a cultural thing as much as a comfort thing sometimes.

And bra's don't need to be laundered too often, OK to use a washer, but some do hand wash them.  It's best to hook them up before tossing them in so the hooks don't catch other clothes. They can usually hang dry in your hacked DIY shower I guess.

No secrets were revealed to me about helping to put one on, but evidently a bra can be a bother to put on and take off, even for the most experienced woman! (or maybe that friend was being nice to caregiving old guy.)

Adapting a shower stall wasn't too bad, but made a big difference!

This photo shows a new dual showerhead, pump bottle dispensers , and a  grab bar.  The old showerhead just unscrewed, and this combo of one fixed and one flexible showerhead on a hose (almost ESSENTIAL for helping someone!) just screwed on; I used that white plastic plumber's tape for a good seal, hand tight.  The rubber hose ones are cheaper, but don't stay on well.  If you're not tall (I'm not) make sure your step stool is sturdy, DO NOT use a FOLDING CHAIR! SAFETY means YOU TOO.

Note the pump bottles of body wash and shampoo, so you can get some with one hand.  Really more useful than slippery bar soap or when one hand is already occupied (with the showerhead, etc).

I tried several brands of suction grab bars; this one stays on for months, but it's more related to the kind of tiles we have, and the size; I tried others that didn't work.  Got all this stuff at either hardware stores, chain drug stores or at a chain bed and bath store.

Paperwork - 1

 

Maybe we know too many lawyers but turns out that some of the paperwork became necessary.  We revamped our Wills about 20 years ago, and learned about paperwork like General Durable Power of Attorney (POA) and the separate POA for Healthcare.  We already knew about Advanced Directives,  and "code" and "no code" concepts, since both my wife and I worked in healthcare.

After her diagnosis, we got an updated POA that she signed in front of a notary at our bank.  I made copies, but may have sent the original off somewhere, BIG MISTAKE!  That same bank later insisted they couldn't transfer certain funds without the original POA, and by that time she could no longer write her signature adequately.  I can't remember the details, but there was a work-around.

Performing transactions in my wife's retirement accounts was another quagmire, even with the right authority and the right documents.  It took over four months and repeated follow-up emails to move our joint accounts around.  Sheesh!  Yeah, old guy caregivers have time, but really?

I dealt with sad and poignant end of life issues many times in my career, so it really surprised me to look at our own Advanced Directives recently (my wife and I had the same boilerplate). Back then, they seemed so, well, "advanced", but now, the wording seems really stilted and  inflexible.

There is a non-profit in our state, End of Life Washington, that has made newer forms available, and I printed those and changed mine in front of witnesses as soon as I could (no lawyer needed).  We can't change my wife's, which is fine, since her basic wishes are clear, and of course we never needed to have the same approach anyway. I keep copies of some documents in a red pocket folder near the front door, helpful for doctor visits and hospital visits.

Shower curtain rods, my wife's old scarves, and a child gate were used to make a visual barrier. 

WARNING it's not at all sturdy, but it seemed to help protect against getting too close to stairs going down:

When it was obvious that the child gate across the top of the stairs was inadequate, I thought that something more at eye level might be a deterrent from getting too close.  Shower curtain rods come in various lengths, and luckily I found some that stretched long enough to fit and support some scarves.  Usually, there's a third rod, even higher, and the scarves go all the way across to make it seem like a wall....BUT OF COURSE YOU CANNOT LEAN AGAINST IT!  It's just a visual barrier.  I also had one for stairs going up, and they seemed pretty effective.

 

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