Friday, June 30, 2006

Caregiving: another piece of the puzzle - college

     On the family shelf of college mascots we can now place a Golden Ram.  Yesterday was parent and student orientation and another piece of not only the puzzle of living with MS as a family but also of the ‘dreams’ came together. While the travel distance and program duration made Patti’s participation impossible, it never would have happened had Patti not committed herself to this goal. Another day and time, we’ll create our own custom made visit with Patti.    

     Caregiving, sooner or later, becomes a generational concern. Living with Patti’s Multiple Sclerosis as a family is not the “government statistic” that tells us that the average length of time spent on caregiving in the US is 8 years. These statistics are skewed because terminal illness is lumped with chronic progressive and remitting remissive illnesses. 

     24/7 assisted care, or the care facility era, was something Patti and I often talked about when Patti had better control of her cognitive functions. The generational concerns of caregiving were important to Patti. She wanted to empower Megan’s future as best as possible.

     Continuing homecare was not only increasingly unsafe for Patti but increasingly the odds were high that my health and well being were at risk as a solo 24/7 spouse/caregiver. If anything were to happen to me, Patti’s 24/7 caregiving needs would fall on Megan. Patti’s physical and more importantly cognitive progression was racing toward a collision course with high school graduation and/or college enrollment. Patti fondly remembered her own college years as a “Nittany Lion” at Penn State and the following young adult years and did not want Megan to begin life as a 24/7 caregiver for her Mom.

     Together we began exploring the economics and process of 24/7 care facilities BEFORE necessary. MS progression seemed to read our minds and forced the issue within a year of when our research began.

     Listening to all the “tips” yesterday, I realized just how unique our family is. I just hope Megan doesn’t go into culture shock surrounded by thousands of able bodied people <grin>.       

     As if an omen, after days of rain and rivers cresting all around, on campus it was a magnificent sunny day while a couple hours away Patti woke up safe and attended and went for a roll enjoying the same marvelous weather when her folks dropped by to visit. Sometimes plans do seem to work out!

Thursday, June 29, 2006

Caregiving: Water, water, everywhere ...

     This picture is of our favorite park where Patti roars around in her scooter. We thought we would take a break while the sun was out – only to find our park was now a pond. <grin> Since my last post of lightning in the night sky, 7 inches of rain has fallen in our town.

      Nestled in the Cumberland Valley we’ve dodged, so far, the deluge dumped on areas only a hop, skip, and jump away.  Of course a break in the rain is always dangerously misleading, now it all has to flow somewhere. Runoff floods creeks which flood streams and so on until the Susquehanna River overflows its banks.

     The sudden unpredictability of weather always affects caregiving because able bodied and disabled people have different abilities and therefore options when it comes to reacting. “Boil Water Alerts” and “Safe Water” distribution centers sound so simple, but are they if you are challenged physically or mentally – or dependent on others for transportation?

     There is NOTHING anyone can do about weather, except always be prepared. Have basic emergency supplies on hand and a plan or two thought out. After all a beautiful summer’s night lightning show might not just be a passing thunderstorm.

Friday, June 23, 2006

Caregiving: stalking the Thunderbird

     With thunder booming, wind wailing and pelted with hail and rain you have to stand your ground when stalking the legendary Thunderbird. … Oh, and don’t forget to click the camera.

     What does this have to do with caregiving? I have no idea … but it sure was fun. <grin>

Thursday, June 22, 2006

Caregiving: Personal Health Record

     I’ve frequently discussed the critical need to computerize medical records as a caregiver. Over the years, my ability to simply take a disc out of my ‘man purse’ while accompanying Patti on an appointment to share some previous test result, etc on a physician’s PC has not only saved time and money but improved the quality of Patti’s appointments especially with specialists.       

     While recently reading some related articles I learned about a site that even offers personal health record ‘tools’ both for free and download purchase. I can’t endorse one way or another as I’ve never tried these products but I know some people like “forms” and “tools”. You can check it out at 


(PHR=Personal Health Record, sponsored by American Health Information Management Association.)

Monday, June 19, 2006

Caregiving: John Henry Syndrome?

     Maybe I still suffer from a bit of a John Henry Syndrome or still need to compete as a solo home caregiver vs. a professional 24/7 care facility. Who knows? (And why when getting distracted in the American mythology of man vs. machine do I always forget that heroic ol’ John Henry did drop dead in victory? – Must be a guy thing.) 

     It takes machines such as lifts to transfer Patti and multiple people to bathe, change, and dress her. Food preparation requires planning and cutting up in bite size pieces. Eating has to be attended and assisted.

     Machines such as alarms monitor her both in her wheelchair and bed to reduce the chance of falls when cognitive problems and mental confusion might cause her to try something she cannot do.

     Multiple staff enable not only support for the machines and to prepare future activities and meals but simultaneously provide companionship and attention.

     Progression of Multiple Sclerosis can be overpowering. Looking at her 24/7 care facility schedule for today and tomorrow, I can honestly say that even in my most egocentric moment that I could not compete. I’ve learned to “supplement” their best with my best – building something even better.


Breakfast: OJ, pancakes with syrup & margarine

09:45 exercise … 10:00 cookies & juice … 10:15 bowling

Lunch: chicken croquettes, baked potato, carrots, pumpkin mousse 

Nap … 02:15 cake baking … 03:00 room visits

Supper: potato soup w/crackers, hot ham & cheese sand. ice cream

06:45 movie & games

07:30 PM (Patti’s preferred bed time)


Breakfast: OJ, cheese omelet, toast w/margarine

09:45 exercise … 10:00 cookies &juice … 10:15 Bingo

Lunch: open faced hot beef sandwich, mashed potato, cream corn, coconut cream pie

Nap … 02:15 strawberry dessert contest … 3:00 book club

Supper: BBQ riblet sandwich, pickled egg & beets, pears & peaches

07:30 PM (Patti’s preferred bed time)

     Though not printed on her schedule, usually her parents visit with Patti for a couple hours on Monday afternoon and on Tuesdays I usually bring her home or take her on an outing from after her nap until bedtime.

     American mythology has to be heroic man vs. something; after all we are the “Cowboys” of the world! However I am finding that in this 21st Century that “to care …” might not only be safer, but better through teamwork. 

Thursday, June 15, 2006

Caregiving: Jubilee Day 2006

     Today was JUBILEE DAY in Mechanicsburg, “the largest one day street fair on the East Coast”. Normally just the June heat and humidity in the Cumberland Valley prevents Patti from attending. This picture (without our disembodied heads superimposed) was snapped a half hour “BEFORE” the fair actually even opened. You can imagine how challenging the street is to navigate in a wheelchair.

     For the second consecutive year Jubilee Day began with “Spring” weather and temps in the 60’s so we seized the opportunity. (Shhh! Don’t tell Al Gore it would ruin his day to hear that June is getting cooler. <grin>) For those living with MS a Spring Day in June is a Godsend!   

     Picking Patti up from her care facility at 9 AM she partied in the streets until after 2 PM! I was amazed. It must have been the pink cowgirl hat that kept her in constant shade. <grin> That is an extraordinary amount of time in the sun and outside for Patti. Plus the sheer volume of visual, audio, and cognitive stimuli was more than she processes in a month. Yet she handled it all in a good and festive spirit.

     Shopping for jewelry at vendor booths is something she enjoys but is obviously challenged by vision and difficulty in conversing with busy vendors who have no patience for shoppers with no memory. <grin> Though sooner or later she always finds the “right” person. Today that was a Native American booth and turquoise. Once the salesperson realized Patti could not really see nor handle a traditional exchange, he came out to her with a box of jewelry to try on. Soon they are chatting like old friends about the “energy” of jewelry and were off on tangents that lost me almost immediately. I was amazed that Patti ended up with two very nice bracelets for less than I expected to spend all total and now one wrist has Hopi energy and the other Navaho energy. Don’t ask me what any of it means. I was just impressed to watch Patti engage in that lengthy of a conversation and negotiation.

     Almost like hitting a brick wall, shortly after 2 PM Patti was suddenly ready for bed! <grin> I got her back and tucked into her room for a well deserved afternoon nap. Shifts were just changing and I convinced everyone to let her nap through to dinner.

     I had forgotten some stuff in Patti wheelchair back pack and had to return to her room about dinner time. She was still so exhausted that the staff had decided to bring her dinner in bed. She was propped up in bed being fed dinner … and “showing off” her new bracelets to the evening staff. <grin> Her after dinner plans were to immediately go back to bed for the night. 

     MS fatigue is exhausting but some days that can be a totally pleasant kind of exhaustion.


Tuesday, June 13, 2006

Caregiving: two furry amigos?

     Cleaning out some files I rediscovered this picture, which I always thought would be a perfect NYC tourism poster <grin>. It captures the indomitable, and often paradoxical, but always unique spirit that is New York City   

     Through out the years I would take Megan on “able bodied” trips and such because besides “living with MS” in the family she also had to learn to grow up and live in the “able bodied” world. … and there is a difference.

     In the able bodied world impulsive decisions can actually be fun. Family outings with Patti were dominated by methodical planning and preparation. We believed she should grow up “knowing” and experiencing both.

     One beautiful “Spring” morning in January we jumped on a train for a day trip to NYC. We were enjoying a street vendor lunch, sitting on the wall of Central Park South, directly across from the fabled Plaza Hotel when I snapped this picture of two furry amigos, a squirrel and a rat.

     Somehow I don’t think the richly expensive Central Park South hotels advertise this view of Central Park. <grin>

Sunday, June 11, 2006

Caregiving: what a long strange trip it's been

     Friday night was a significant landmark in our journey of living with MS. Our daughter graduated from high school.

     16 and a half years ago when Patti’s first major MS exacerbation left her knocked out of the ‘hands on’ side of parenting we discovered a book, “Mainstay: For the Well Spouse of the Chronically Ill” by Maggie Strong. 

    One ‘lesson learned the hard way’ in Strong’s experience as both a parent and a spouse caregiver whose husband had MS was that the immediate needs of the child must be the focus of the family and not the chronic illness. … While that may sound so logical, yet so many times over the years MS has tried and tried again to demand the center of attention, resources, and focus.

     Frankly it has taken much sacrifice on Patti’s part to place being a Mother FIRST, and chronically ill SECOND. With the progression of Patti’s physical and cerebral symptoms and as the spouse caregiver and basically single parent it has been a delicate and often unfair balancing act of time and resources. Megan has certainly faced unusual personal challenges along the way. However, we have stayed the course and tried to keep our family focus on the immediate needs of our daughter.

          … You can’t sit through a graduation ceremony and not drift into memories. I’m obviously showing my age and counter culture streak but even with “Pomp and Circumstances” playing over and over; the Grateful Dead lyric “… lately it occurs to me, what a long strange trip it's been … ” seemed oh so appropriate. <grin>

Wednesday, June 07, 2006

Caregiving: "how much love we put ..."

     Back over the Memorial Day weekend, I was tempted to stop answering the telephone. Tragic news can explode into your life like shock waves. Two calls informed me friends had died. One was 5 years older than me and the other 5 years younger.

    As the time of grief and memories ebb, death leaves behind a mirror reflecting questions about our own life.

     While preparing a eulogy,  I found peace in these lines attributed to Mother Theresa:

“It is not how much we do,

but how much love we put in the doing.

It is not how much we give,

but how much love we put in the giving.”

    One theme I found in my reflections is that death should be motivating for the living because we can still choose how much love we put into the next moments in time.  

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