Caregiving Halloween

As pictured, fortunately there was “Trick or Treat” at Patti’s care facility on Halloween night!  Patti was able to enjoy an evening of costumed characters parading before her. It’s a rare holiday she can participate in and enjoy where a wheel chair isn’t a factor.

Last Thursday was “designated” Trick-Or-Treat evening and I brought Patti home for an afternoon & evening of family time.

 

Halloween has always been a MAJOR Holiday for this family. At our previous home we would average 200+ trick or treat visitors on Halloween and host a neighborhood family party immediately afterwards.

 

Over the years, it was ideal for Patti as she ruled like a queen from her wheel chair on the deck while all paraded to her for treats. <grin>

 

Music, lighting, theatrical fog, and extensive decorations added to the allure. We never gave out candy, usually glow necklaces.

 

Lost in the display was the symbolism of a party of 6 ft skeletons sitting in chairs around a patio table I dragged into the front yard. There was always one open chair at the table. I’d begin my own ritual each Halloween evening by having a drink and spending some private time reminiscing with the skeletons.… In almost 15 years only one neighbor ever noticed that the number of skeletons changed or asked about the eccentric minutes.

 

Each skeleton represented a friend who had died too young. It was the only time we all could ever spend together.

 

Probably some dormant Druid gene in my DNA has always made my Halloween ‘edgier’ than Hallmark’s. In Irish mythology, the shield of Scathach is lowered for one night and the barriers fade between the world of the living and the spirits of the dead. Honored with food and entertainment the dead are welcomed for their brief visit home for one night during the ancient Celtic festival of Samhain to celebrate the end of summer and coming of winter.

 

As a big fan of Winter, I’ve always been intrigued by this ancient three day bash to welcome Winter and what a long strange trip through history it has been to copy cats like Christianity’s All Soul’s Day to today’s costumed Trick-Or-Treat kids gorging on candy. <grin>

 

However here they have “designated” Trick Or Treat nights. Of course, that cannot be Halloween night because bad things might happen. The ultimate in local government fascism. <grin> The end result is we have hosted exactly three (3) trick or treat visitors in 4 years.

 

Patti remarked several times about being confused. Her observations however were quite correct, such as “Where is everyone?” Or, “are you sure it is the right night.”

 

For once I found myself trying to explain it had nothing to do with MS but the outside world was screwed up. Talk about challenging information to process. <grin> ... What we need is more Druids and less local government paranoid interference in the world. <GRIN>

 

HAPPY HALLOWEEN!

Glancing back at Sunday's entry on reflections about transition from visiting ...

 

As an example, take the concept of “lost”. I know people who freak out if they leave the path when walking in the woods. I, on the other hand, personally enjoy wandering in the woods. Within an hour my companions could be experiencing anxiety and “be lost”. However, I’m not “lost” because I wasn’t going anywhere in particular.

 

At the risk of oversimplification, Patti’s MS symptoms may cause her perspective on daily life to be somewhat the same.

Caregiving change in seasons

 With weather seemingly gone berserk everywhere else, just last Wednesday Patti was out enjoying a scooter ride in the park in sunny 72 degree temps. Untouched by a year of weather madness or even reality, I was wondering if the Cumberland Valley had become Shangri-La.  

 

Finally, even though late in the season, Jack Frost may find his way tonight.

URGENT WEATHER MESSAGE - NATIONAL WEATHER SERVICE ... FIRST FROST OF THE SEASON FOR MANY SPOTS ACROSS THE VALLEY TONIGHT. ...

Seasons of the year certainly do affect caregiving. In our particular case, Winter is my favorite season of the year. Any seasonal challenges are more than counterbalanced by the renewal of spirit and passion that I wolf down from Winter.

Caregiving: transition from visiting

As MS expands its assault on the brain, MS becomes a lost world of mental confusion and memories disconnected from time. The ‘well world’ however, remains the real world. I, as a spouse and caregiver, have to try and move between the two.

 

Planning demands that I anticipate Patti’s needs. Beyond the physical symptoms of MS there is memory loss, erosion of cognitive and reasoning abilities, erosion of the more intangibles such as inability to attach ‘proper’ reactions to emotions, or even levels of reaction. Much work goes into even the simplest of outings to improve its success. ... Yet, if asked, Patti cannot recall, most of the time, what any outing was about. 

 

Transition from visiting, for me, is about shifting from that world of shadows, where pieces of dreams are dead but not dead, and then back into light. I always find it difficult to switch caregiving on and off. Pieces of me get stuck. Some days I’m so lost in thought, I find myself sitting in my car before driving away and suddenly its several minutes later. I often drive on back roads home to avoid traffic and any attention related driving decisions. The transformation back to interacting with the ‘well world’ is more challenging some days than others.

Caregiving: scooter for "legally blind"?

As a caregiver there are periods of time I feel more like one who tries to herd cats. Yet sometimes one of those exercises in futility actually appears to work.

 

Recently through a team effort of Patti’s family we brought her scooter out of mothballs. So far it’s been a success. Obviously its use is certainly different in this era with Patti “legally blind”. There is therapy in fun and empowerment. Sometimes trying to put the square peg in the round hole is the better solution.

 

P.S Yes, it was a 72 degree, gorgeous day on Oct 19th in Pennsylvania for the outing pictured.

Caregiving CareBots

“They don’t get tired, they don’t get stressed, they don’t have emotions …  -- caregiver robots are on their way…”

 

Make Way for CareBots -- the Newest Caregiver?

 

Click the above headline from Caregiver’s Home Companion for the full story.