Caregiving: meandering through time

     Photographs are keys. Old doors creak open on a freeze frame moment in time. Multiple Sclerosis symptoms of visual impairment have prevented Patti from use of these keys for too long. 

     Part of my home-made cognitive rehabilitation therapy has been to scan photographs into our PC then burn to DVD so she can view on a large screen TV. 

     Prospecting through piles of old pictures sometimes you strike gold.  

     Finding these two pictures “opened” doors to memories of our last evening playing together as a family BEFORE “living with MS”, Thanksgiving Evening 1989. As photographed our then 18 month old daughter and the frozen Butterball turkey took turns going down the sliding board in our front room. 

     Patti went to bed with NO MS symptoms. (She had a DX of “probable MS” from a brief episode of finger numbness and slurred speech from years earlier, bordering on forgotten.)

     Patti awoke unable to see, walk, or even talk.

     Patti would spend the next week in the hospital recovering from her first major MS exacerbation and I was thrust into my journey as a spouse/caregiver and basically a single parent.

      What's also interesting about these pictures is the ‘appearance’ of that dish towel. Rather than the soft and cuddly "blankies" of other kids, that green and white dish towel evolved into our daughter's security blanket. Makes me wonder, now, if her offbeat choice didn’t somehow “reach back” to before Multiple Sclerosis?

     Fast forwarding to this past Saturday I was visiting a college campus with Megan. It was impossible not to spend a reflective moment thinking what a long, strange trip it has been "living with MS" in our family.

    Photographs are locked in time. Memories meander through time.

"... Nobody's right if everybody's wrong ..."

     Reading another AOL Journal, SIMPLY READ, I noticed an entry about “becoming your parents.” 

     Yesterday I received in the mail Guidelines: School Sponsored Dances from our daughter’s high school. Some excerpts:

Alcohol Screening Devices: Students who choose to attend school dances will be subject to spot checks for the presence of alcohol. … If the screening device indicates the presence of alcohol the student(s) will be referred to the local police.

Dress / Dance: Students must be appropriately dressed for a school sponsored event. Dancing that is lewd or sexually explicit will not be permitted.

     The Rydell High School dance scene from “Grease” would be in jeopardy under these ‘guidelines’. <grin>

     Alcohol is a legal issue and not debatable. If ‘spot checks’ deter one high school age driver from driving under the influence I applaud the idea.

     The other problems challenge school administrations every where. However I can’t think of anything more inflammatory to the teenage ‘rebel spirit’ than a subjective rule about dress and dancing. School Boards seem to like to beat drums.

     I found myself reminiscing about my own high school years. In those days I graduated from a ‘segregated’ high school. Dance concerns were about the “wrong kind of music” and the advent of anti-war music (Viet Nam) and peace symbols in decorations <grin>. I couldn’t resist pushing the late 60's jukebox button for Buffalo Springfield’s “For What It’s Worth”:

“There's something happening here

What it is ain't exactly clear …

There's battle lines being drawn

Nobody's right if everybody's wrong

Young people speaking their minds

Getting so much resistance from behind"

     Maybe becoming a parent or simply surviving too many years, you can now “see” the bigger picture. Fortunately, high school is only a “blink” in the timeline of anyone’s life.

Caregiving: Medicare Drug Chaos

Government Orders Emergency Assistance

in Medicare Drug Chaos

     It’s frightening that our government “created” this chaos and now is ordering “emergency assistance”. God help us!

     Even Patti has become ensnarled because her care facility pharmacy mistakenly billed Medicaid in 2005 for Patti’s prescriptions (instead of her private prescription plan) which in turn triggered automatic enrollment in Medicare D for 2006. No one can explain this, however ...

     At risk is forfeiture of her private prescription program through her long term disability policy. Unequivocally this is insane as no Medicare D policy even resembles the benefits of her private prescription package.

     … and once again someone else’s mistake has put Patti’s care options at risk. Trying to unravel the mistakes of bureaucratic juggernauts in the middle of this chaos is … how can I best put it … "deja vu" doesn’t quite fit … perhaps in song?…

“It's astounding

Time is fleeting

Madness takes its toll ..."

The Time Warp from Rocky Horror Picture Show

Caregiving: keeping time with a dandelion clock

     Sunday, as I was about to call the 24/7 care facility and ask them to please prepare Patti to go home for the evening; instead I received a call from them.

     After the nursing staff had dressed Patti following her afternoon nap, she surprisingly asked them to call and tell me she was "ready to be picked up".

     Evidence of a psychic connection? <grin> No, even more impressive, possibly some evidence of continuing improvement in memory, cognition, and/or reasoning. 

     This particular week I had worked methodically to remind and reinforce with Patti that I would pick her up Sunday afternoon. My work schedule prevented any outings since our Wednesday coffee house excursion. 

     Homemade cognitive rehabilitation therapy for Patti has become a quest of mine over the past year. This was only the second time Patti has ever asked them to call me in 21 months. I cannot even remember when she last 'remembered' a future plan and reasoned through the steps necessary to make it happen.

     Living with Multiple Sclerosis in our family for two decades I know better than to ever claim a victory. All you can do is enjoy little miracles and hope for more.

    We seized the few hours for dinner and the latest Jim Carey movie, “Fun With Dick And Jane” before Patti abruptly ran the fatigue flag up the pole with the announcement, “I just want to go to sleep.” (Less than 5 hours after she got up from her nap and was 'ready to be picked up'.<grin>) 

     There are moments in all this when I wonder if time isn't more appropriately kept with a dandelion clock. 

Caregiving: dessert & coffee

     To embrace gusting winter winds is to inhale the FULL life force …  it was a PEFECT evening for a mid-week break of dessert and coffee at Casa Mani Caffe. Patti nourished herself with chocolate mousse torte and hot chocolate, while I feasted on pumpkin cheesecake with Caffè Macchiato (with extra espresso). After all, I was doing the pushing    

     We also enjoy this Italian style coffee shop because, as you may notice from the picture, even though located in the historic downtown district there are no steps to get in. Living with Multiple Sclerosis in our family you notice such details and you patronize accordingly.

     Wheelchair friendly environment plus delightful food and beverage is a treat. Throw in a bracing ‘bear hug’ from Old Man Winter and you have to wonder what you did to get this lucky.

Caregiving: visiting & parties

     Dr. Seuss taught us that it is "Fun to have fun, but you have to know how...". The wisdom in The Cat The Hat applies throughout life. Patti enjoys visiting and being a part of friends’ lives. On her own, her symptoms and natural barriers would prevent her involvement. As a caregiver I can get her past the barriers but that in turn opens a Pandora’s Box of new and unusual challenges.

     Homes of friends, unless disabled themselves, are never accessible. Plain brute force can empower access. Fortunately if a ‘party’ that implies bodies and all things are possible with teamwork. She can get IN but … unless a person in a wheelchair “lives” in that house no one arranges their furniture to anticipate a moving chair. Wide open space in every room, foyer, and hall is not a concept in home decorating in America. <grin>

     Patti’s MS symptoms of visual impairment and mental confusion work in bizarre tandem in such social situations. 

     Even an able vision person will not know everyone at a party. Patti however cannot see anyone unless they are within a few feet of her face. You cannot hang a sign on Patti telling people she is visually impaired and please stand or sit within three feet to talk with her (especially since able bodied people tend to try not to crowd each other).

     Mental confusion accelerates because she can’t see most of what is going on yet hears multiple conversations all around her.Trying to process the correct information and participate in a conversation one on one for Patti is unusually challenging. As best as she can describe it, I understand it to be somewhat like trying to walk through ever deeper and deeper mud. 

     I don’t want to be Seuss' sentient goldfish hovering over Patti yet I do have to stay close. Well intended people plus MS symptoms could range from a mess to a disaster.

     She has a right to try to have fun and she enjoys it in her own way for as long as she can. Her friends and people enjoy her company.

     Multiple Sclerosis is complicated and I believe that people never really learn about any disease until it has a face they know.

Caregiving: PROUD

     Living with Multiple Sclerosis and caregiving can easily cause tunnel vision even within your own extended family. It's too easy to miss the daily lives of others.

     I was about to type “this is my nephew …” but that doesn’t seem to quite fit. 

     Let me say, it is an honor to be this young man’s uncle. Recently graduated from Parris Island, SC may I introduce … Pvt. Daniel Main.

Caregiving: Pennsylvania Farm Show

     I spent Tuesday pushing Patti through the 25 acres of fun known as “The Pennsylvania Farm Show”, the largest indoor agricultural event in America. As pictured, Patti could and did enjoy herself. Pumpkins as big as a wheelchair and 1600 lb bison are easy to see even if “legally blind”. 

    The ‘food court’ alone is worth the visit. <grin> Food options are so overpowering you discover something new each year. We ‘discovered’ the PA Mushroom Growers Assoc. booth and inhaled breaded “schrooms” dipped in buttermilk ranch dressing. In the baked goods section, Patti insisted I help her finish her “Old Fashioned Shoo-fly Pie” (I was a 55 yr old “Shoo-fly Pie” virgin). I was grossed out to learn the pie used to sit on window sills and attract flies, hence the shoo-fly name, before my entire metabolism rocketed into hyper drive from the sugar rush. <grin>

     Last year we were frustrated competing with strollers and caterers for elevator time. This year we were wiser and the weather was gorgeous so we simply rolled outside and used the gently sloping parking lots connecting the acres of buildings.

     The adjacent handicapped parking lot was full and we had to park in a satellite handicapped lot about half a mile away. Limited shuttle bus service was available but as I mentioned the weather was wonderful and the land flat and smooth. Plus this caregiver needed to push off the ‘food court’ calories. <grin>

Caregiving: wheelchair accessible vehicles

Recently shopping for a wheelchair accessible vehicle I compiled and more importantly “condensed” some useful information and links. 

Turning Automotive Seating (TAS) by Bruno

http://www.turningautomotiveseat.com/

… NO LIFT – NO RAMP! The seat does the work! The seat extends out of the vehicle. You transfer into the actual car seat. With the push of a button it picks you up and places you back in the vehicle.  

… Now this is COOL! Regrettably Patti’s level of disability is probably too progressed. In theory you should be able to transfer. However, we found a shop that is installing one in a vehicle and they are going to let Patti “try it out” later this week. One never knows, do one?

… MORE vehicle options this way because it can be installed in sedans, SUVs, wagons, crossovers, minivans, pickup trucks and full-size vans.

… Out of curiosity, I got a quote of $6,000 fully installed.

… TAS seat can also be removed to restore your vehicle to its original condition for resale.

A WheelchairJunkie's Guide to Wheelchair Accessible Vans

Used Accessible Vans: A Case Study in Logic

http://www.wheelchairjunkie.com/accessiblevans.html

… “WheelchairJunkie.com is about mobility, not manufacturers …”, “wheelchair gonzo”, Mark E. Smith’s wheelchairjunkie.com website is worth a visit any day.

DISABLED DEALER MAGAZINE

www.disableddealer.com

… national resource of regional magazines for dealers and classified ads for accessible vans, wheelchairs, scooters, homes, etc

... enables you to "localize" the Internet <grin>

… also a collection of interesting and insightful ‘featured’ articles

… awesome collection of ‘links’ for accessibility products

Some thoughts…

     Most vehicle manufacturers offer accessibility modification incentives. However they seem to be linked only to ‘new’ vehicle purchases and rarely exceed $1,000. That will get you very little in the way of accessibility modifications and considering how much value a vehicle looses in the first year the “incentives” I’ve seen so far would be more like “fool’s gold” for us.

     Shopping for a used ‘accessible’ vehicle is maddening because our customized needs are totally different than the previous owner’s customized modifications. Where did the assumption get started that all disabled people are the same? Probably from some well intended able bodied sales person. <grin>

     LOGIC would say buy the ‘previously owned’ vehicle you want and customize it to be accessible to your needs. Not only would this be logical it would be the most ECONOMICAL. However that is a problem to banks and even “low interest lending foundations for people with disabilities” <grin> God forbid you try to borrow money twice in a short period of time, even if the sum is less than one big loan for something you don’t really need.

     For example, a previously owned and previously generically customized for wheelchair accessibility Dodge Grand Caravan SXT runs on average $30,000 yet the same year and mileage Dodge Grand Caravan SXT (even color) if bought as a previously owned ‘able bodied’ minivan and then customized specifically for Patti’s wheelchair needs would cost us a total of $22,000. The price difference represents modifications we do not need and because ‘accessible vans’ have a different supply and demand market value.

     … and a skeptical part of me believes the “accessibility” market preys on people’s needs. You get so conditioned to being screwed over medical supplies and equipment why not stick it to you for vehicles? But, then again, maybe I’m too skeptical. I’ve got to learn to stop thinking logically and economically <grin>

Caregiving: interesting journals

I received this notice from AOL about a woman’s journal and her blog picks dealing with people living with physical and mental challenges.

-------------------------

New: Journals Editor's Picks Alert

 Welcome 2006's first Guest Editor, Tracey. Although she's living with lupus, she's still One*Hip*Mama. Check out her top blog picks. 

Caregiving: a trip to the dentist

     Outside of Jack Nicholson’s character in the original movie version of “Little Shop of Horrors”, I don’t believe anyone “enjoys” a dentist appointment.

     Add Multiple Sclerosis to the equation and then there are the physical and mental challenges involved in simply visiting a dentist. At least 6 transfers are required within a brief period. We’ve never found a truly accessible dentist chair. I need to lift Patti in and out of her wheelchair to dentist chair and vice versa, plus the multiple vehicle/wheel chair transfers involved in transportation. 

     Once in the dentist chair spasticity, mental confusion, and attention span can create a 'symptom soup' that boggles the efforts of dental hygienists and dentists. 

     As for daily dental hygiene, eye hand coordination and mental confusion are just are too much for Patti to consistently overcome. We’ve tried electric and sonic tooth brushes, etc all with no success.  … The dentist wrote an “order” for assisted daily dental care, I believe this will help though Patti will probably hate help at first.

      We try to keep to a yin-yang daily philosophy when possible so a dental visit needed a 'treat' for balance and harmony <grin>. 

     Fortunately a Subway sandwich shop was right next door. It was a rare win-win opportunity. Patti got a tasty lunch out and simply rolling next door was two less transfers for me. Workers were more than happy to accommodate Patti by customizing her sub including cutting up into easy bite size pieces and 'patiently' and creatively repeating choices as Patti's short term memory confounded the process of ordering. Even tables designed for wheel chairs were available. Applause! Applause to Subway.

Caregiving: prescription naps

     Dental appointment, a couple evenings of family time at home, accessible vehicle meeting, and like any Penn State alumnus Patti had to watch the Orange Bowl (she did make it though half-time). MS-related fatigue may as well be an additional companion; it has so impacted these last 4 days.  

     My previous post regarding NMSS brochure is related to my campaign to have ‘naps’ considered part of Patti’s ‘treatment’. Currently she may or may not nap daily depending on her memory symptoms and the availability of activities at care facility. Residents cannot be ‘required’ to do anything unless medically prescribed.

     I hope to have structured napping “strongly encouraged” as part of her care plan. It is my observation and experiences that Dr. Jekyll vs Mr. Hyde swings in physical and cerebral symptoms are linked to MS-related fatigue in Patti’s case. This in turn dramatically impacts Patti’s involvement and efforts to keep her involved in family.

     Anecdotal cause and effect is proof enough for common sense driven homecare. Professional care needs to feed on documentation and references to support the same approach. NMSS ‘Professional Resource Center’ publications and clinical bulletins are designed and packaged for professional healthcare. They “empower” caregiver and/or patient suggestions.

Caregiving: MS-related fatigue

          Fatigue: What You Should Know

A Guide for People with Multiple Sclerosis

Who should read this guide?

·        People with multiple sclerosis.

·        Family, friends, and caregivers.

·        Health-care professionals.

Why is this guide important?

     Fatigue is the most common symptom of MS. As many as 75% to 95% of all people with MS have fatigue ...

What is MS-related fatigue?

     Everyone has low-energy days. And everyone knows what it's like to be down in the dumps and not feel like doing much of anything.

     MS-related fatigue is different, and it's not always easy to spot. With MS fatigue, people have more "off" days than "on" days …

 

(Click the blue headline to access the full brochure from NMSS.)

Caregiving: cat called 911 ...

Cat Called 911 to Help Ill Owner, Police Say

“… The cat's owner, Gary Rosheisen, was on the ground near his bed having fallen out of his wheelchair …” 

For full story click blue headline.

Caregiving New Years Eve

     Multiple Sclerosis is always impossible to predict. Armed with her new winter hat and mittens Patti was suddenly up for a street party with temps in the low 30’s and a ‘winter mix’ intermittently falling.

     I had intended to take her to a movie but instead we headed to Carlisle’s “First Night”. It’s a festival that combines outdoor activities with a half a dozen shows available in venues around the town square. 2,000 people attend, on average, annually.

     Accessibility in historic old towns is not exactly a strong point but everyone was simply extraordinary about ‘making it possible’. For example the first show we wanted to attend was a rock and blues concert held in the old historic courthouse in the main courtroom. Upon arriving we discovered that not only was seating not wheelchair accessible but you had to walk up three flights of stairs to get to the old courtroom.

     A police officer overhearing our dilemma offered a solution if Patti didn’t mind riding a freight elevator. He walked us around to the loading dock were we joined the band and equipment in the elevator. Once on the correct floor, then the problem was the only way to seating was through the band. ‘Stamper Lumber’ (that’s the band’s name out of Oregon) were so accommodating about making room for Patti to roll through their set. It was genuinely a welcomed feeling and teamwork that got her there.

     It was like that anywhere we encountered an accessibility challenge. People were unbelievable.

     The clopping of hoofs on the street from horse drawn carriages amused Patti and the horses found her intriguing. (Animals always seem fascinated by wheelchairs.) 

     No champagne and midnight but Patti did make it to 10:30 playing in the streets on a freezing damp night to end 2005.