when tradition is not accessible

How we celebrate holidays are traditions. I mean there is no law about how one is to celebrate the 4^th of July for example. Yet unquestionably there are pressures.

Holidays like most things are biased toward able bodied able minded celebrations. When that is not your life we adapt.

First and foremost heat and humidity is synonymous with the 4^th of July and also public enemy #1 for Multiple Sclerosis, something has to give here. We adapt making the 4^th of July more MS friendly by turning it into a morning holiday.

Parked in the shade of a weeping willow tree Patti was close enough to see and interact with crafts and contestants in Anything Floats race in Boiling Springs, PA … while the temperature was still only 78˚F (25.5 ˚C). Later as the temp neared 100˚F (37.7˚C) Patti was already enjoying her air conditioned siesta!
Anything Floats July 4 Boiling Springs 38sec

In this care facility era we are blessed with teamwork getting ready. Having help with Patti who is not only non-ambulatory but unable to assist with any of her activities of daily living is a godsend. Arriving to find Patti up, changed, dressed, and transferred from her bed to her wheelchair is immeasurable in the effort and stress it saves me and empowers our outing.

Progression of MS symptoms has unquestionably affected outings over the years.

Duration for example is affected by bowel and bladder incontinence. With progression, it’s not about finding an accessible commode but about leaving to find a bed to transfer Patti to and change her Depends and clothing.

Even sitting upright in her wheelchair for long periods of time is ‘complicated’.

Dysphagia puts her at increased risk of choking. Holidays and the hospitality of food seem to go hand and hand. Large loud gatherings with food are not fun as my vigilance must be undivided.

Blend in heat and each and every symptom above only worsens.

Sooooo why even get out of bed? Simple to go where no one has gone before.  Some follow traditions, we create new ones.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

through MS 'symptom D' glasses

Not unlike 3D glasses at theatres sometimes it’s easier to ‘see’ living with Multiple Sclerosis when moments in time such as an outing to the movies are viewed through “symptom – D” glasses.

Getting ready is all about non-ambulatory which means transfers and assistance with dressing and changing Depends. Incontinence is best understood in terms of continence. How often do you visit the commode? Now just replace the word commode with - transfer from wheelchair to bed, change Depends, and transfer from bed to wheelchair.

Once ready to go, it’s onto wheelchair accessibility.

Considering all that’s involved with optic neuritis, I have my suspicions about 3D glasses, though this outing is 2D and visual impairment is more about proximity of accessible seating to the screen.

Whether jerky or simply lack of muscle coordination, spasms and/or spasticity means no bucket of popcorn goes on Patti’s lap. I hold the popcorn between us resting on her wheelchair rim.

Most dangerous of symptoms is dysphagia. Short circuiting of the muscles involved in swallowing can equal choking under the best of situations. Sitting in the companion seat at a theatre is the equivalent to the lifeguard chair at the beach.

Unlike garden variety fatigue, MS fatigue is more severe, a sudden lassitude.  In Patti’s case the odds increase as the day wears on, therefore matinees are preferred over evenings.

Sometimes you get a cocktail of symptoms. Dysarthria is all about the short circuiting of nerves controlling the muscles involved in speech. Pseudobulbar affect is all about inappropriate laughing/ crying.  In other words there is no way Patti is going to turn to me and ‘whisper’ something about the movie. More likely she may abruptly and unintentionally loudly interact with the movie dialogue.

Here again less attended matinees are helpful though I confess I’ve grown to enjoy Patti’s interactive MS dimension to the movie going experience.  

Ahhhh and alas there is always memory loss. Tucking Patti into bed at her care facility after our outing to see “Rango”, the nurse asks her where she went. “To dinner at my parent’s house!” J

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer

caregiving: incontinence trumps

Incontinence may be intellectualized by doctors but from a caregiver’s perspective incontinence trumps.

With progression of Patti’s Multiple Sclerosis she is totally incontinent both for bladder and bowels. Add into the mix a wheel chair, a non-ambulatory patient with cognitive impairment and you have more than a challenge.

I think it is safe to assume that most people have changed a diaper on an infant. An adult’s diaper is the same concept just on a grander scale.

Incontinence also means whenever. Anything and everything else planned has to accommodate the need to change Depends and usually clothing.

Yes, all manufacturers promote their product does not leak. If your faith is based in US advertising, then bless you. However, I will say after a decade of caregiving for incontinence that Kimberly Clark DEPEND® brand leaks less.

Picking Patti up on Saturday for her parent’s holiday party my nose told me something was not right. Patti claimed that she had just been changed and just wanted a cigarette. I wasn’t buying.

Preparing to change her myself I found myself shortly assisted by 5 aides and a lift. I think operating rooms have less people.

Later driving back she experienced more bowel incontinence. Changing alone was not going to be adequate, a shower was needed.

Timing was bad as aides were all busy getting other residents to bed so I charged forward.

First, dead lifting Patti from wheelchair into bed so I could get her clothing and Depend off, then dead lifting her into a shower chair to roll into the shower.

Soiled clothing and bed linen I quickly tossed in hamper Depends and wipes in trash.

Observing me, the LPN put meds on hold and pitched in finding me extra wash cloths and towels, rounding up fresh linens, and making the bed.

After shower I dead lifted Patti back into bed, whipped on new Depend, nightgown, and rolled her regular wheelchair into the shower as it too needed a cleaning.

All's well that ends well, as Patti was falling into sleep as I turned out the light and sloshed out in soaking wet shoes.

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