Caregiving: family

     Family time is something you make, it doesn’t just happen. Juggling a care facility for Mom and a teenager might be unique to our story - I don’t believe it is exceptional considering all that families everywhere face everyday.

    There are times it seems to me the challenge of ‘family’ in the US is greater than physical and mental obstacles.

Caregiving: "other journals"

     Whenever I open a Journal home page I usually find “other journals” listed. Why are they there? Is there a common denominator?

     Looking at my own “other journals” and asking myself that question,  I thought I would try to take the time now and then to offer a text snapshot of those I’ve chosen to list, just a few at a time.

     I’ll begin with my “classics”, the original three that have been “other journals” for two years.  

      

A day in my life....

    “ ... a daily journal of a patient and the caregiver, and their walk together each day.”  I’ve been following Sue’s caregiver/spouse AOL journal since the summer of 2004. Jack, her husband, has Parkinson's disease.

     Earlier this year, Sue took caregiving to another dimension when they moved from Southern California to the Oklahoma prairie so Sue could take care of her 87 year old Mom.  

     In my opinion, caregiving does not increase mathematically (1 + 1 = 2) but grows exponentially.

     In the movie “Wayne’s World”, Wayne and Garth fall to their knees in front of Alice Cooper proclaiming “We’re Not Worthy, We’re Not Worthy!”   

     Were I ever to meet Sue in person, I would have to repeat this gesture of pop culture acknowledgement of a “STAR” caregiver.

     Theirs is an amazing story of “taking care” of family.

   

MY JOURNEY WITH MS

      As Christine says “I have MS, it doesn’t have me”. Christine was one of the first few people to drop in out of cyberspace and post a comment to my journal.

     Christine's entries and poetry offers a creative insight to both Multiple Sclerosis and more importantly to the balance of living with MS.

    As a caregiver spouse for 2 decades it’s often too easy for me to forget Patti’s earlier struggles of courage for independence. Not all MS will progress the same way, and I pray people will never need to know the caregiver spouse relationship.

     To share a journey is the wonder of this technology. In sharing we find pieces of the puzzle of truth.

     Christina’s gift for words and her Mom’s art (Tamara Gerkin, muralist and artist) create a captivating home page to enter her journey.

     An AOL expatriate over banner advertising the link above leads to her new home on Blogger.

 

My Take On Life (A.K.A. The Making Of A Home)

“Here's how I see it!  You may not like what I see or what I have to say about it.  But, it's life as I see it. You're always welcome to stop by and chat!”

     Deb’s Journal is like a 21st Century visit with someone at their home what with webcams of the front and back yards and even her cats. <grin>

     Deb is in the computer field and through her “My Cube” link she is always sharing the coolest computer and Internet “stuff”.  You can find her on both AOL & Blogger, the link is to AOL.

     The home visit feel is enhanced by leaving you with mouthwatering, and healthy recipes, chats about gardening or just about anything, and of course the trials and tribulations of home ownership. Sharing her proactive approach to health care is admirable.

    Keeping up with everything is as impossible for me as it is to label her journal. I simply enjoy the eclectic atmosphere and always the Georgia hospitality.    

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

     Following these Journals for two years I “feel” as I would for a friend or neighbor.

Caregiving: the "dog days"

     Ah! The “dog days” of summer have settled in and that is never good for trying to live with Multiple Sclerosis in our heat and humidity. Fortunately air conditioned facilities are abundant in the United States. 

     As a family it is also a time of year when we are more different than other families. Family traditions such summer vacations, travel, beach, pools, and such have, with Patti's MS progression, increasingly fallen into that “parallel universe”. <grin>

    If you are committed to survival then you adapt. We’ve both adapted and split time between living with MS as a family and raising our daughter to eventually live as an able bodied young person.

     Not every caregiving story will be like ours. Our family story involved simultaneously caregiving and parenting, one declining and one growing up. (Both too fast in my opinion <grin>)

     We would carve out time for Megan and me to “do” family summer traditions.  For example, at the beach, is the freedom to run in the surf, build sand castles, spend a whole day in the sun, jet ski, and more that we believed she should experience. Patti’s MS progression quickly erased her from any sunny picture.

     We did try “beach” wheelchairs, hotels directly on the boardwalk and such in the earlier years. These attempts were too all consuming and one way or another the sunny “dogdays” only flared or exacerbated MS symptoms and trips ended up aborted.

     We’ve learned and grown. The last couple “dog days” we’ve been able to enjoy family time with Patti while doing air conditioned activities such as attending “Pirates of the Caribbean”. Movie theatres are not only blessedly air conditioned but offer 30+ ft images, perfect for Patti’s visual impairment symptoms. And of course, there is always the local ice cream parlor!

     (I was surprised to discover what with all the movie tie-in’s these days, that no one has marketed an ice cream with a "Caribbean” or “Pirate Rum Chocolate” flavor. <grin>)

Caregiving: reflecting on ...

     Reflecting on my periodic entry about Patti’s “level of disability & ability”, I can’t help but find it curious over these decades that while science tries to measure the impact of a chronic illness or injury, on the other hand we do not try to evaluate the potential of those without physical or mental challenges.

     I’m reminded of a line from the movie, “A Knight’s Tale”; “You’ve been measured. You’ve been weighed. And you’ve been found wanting.”  What a mess if standards were applied to the ‘activities of daily living’ of the able bodied?

Caregiving: level of disability

     I believe it is advisable to periodically “quantify” Patti’s level of disability and Multiple Sclerosis progression; and to ‘remind’ myself, family, friends, and readers of her dependence on others in measurable terms. 

     MS complicates labeling because physical and cognitive symptoms progress differently in each person. Yet a numerical level of disability and ability is needed and used for communication within the medical profession.  

      Neurologists often use the Kurtzke Expanded Disability Status Scale (EDSS) specifically for MS. Overall “level of disability” is scored on a scale from 1 to 10, with 1 being the least. Patti’s disability scores in the upper levels at 8.25.

     Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are commonly evaluated on the Modified Barthel Index of ADL on a scale from 0 to 100, with 100 being “independent”. Patti’s abilities score in the lowest percentiles at 10.

     Not everyone with MS may have this same level of disability. However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong) 

Caregiving: gospel plows and vigilance

     Friday night was an “exceptional evening” for Patti going for an outing until after 9:30 PM. Multiple Sclerosis “fatigue” has given her a natural body clock that wants to go to bed by 7:30 PM. I should rephrase that “demands” to go to bed by 7:30 PM. <grin>

     We went to see The Buc Hill Aces featuring Brian Lockman at the Cornerstone Coffeehouse in Camp Hill, performing “songs you probably won’t hear anywhere else”. <grin> We’ve known the Lockmans since we moved up here, our daughters attended high school together. I meant to ask why the group is named after an old Pittsburg Pirate pitching staff, but that will have to wait. After all what’s in a name?

    Amazingly Patti found herself in the same audience with one of her cousins – JoAnn, Patti thinks. Prompting me to remind her that “it’s a small world” after all (and begin singing the dreaded song <grin>).

    Fortunately she and MS fatigue could be bribed by a Latte and a brownie.  And there was a chance to sing, after all, along with the refrain to an ancient Bob Dylan song, “Gospel Plow.” Definitely one song you probably won’t hear anywhere else. Brian's music and banter was perfect for the intimate environment ... and most important a fun evening out! 

     Outings and such never diminish the necessity for caregiver vigilance. I just find it boring to dwell on it in reporting all the time. Also over 20 years I’ve become very good at my job and can balance caregiving within other environments - to a casual observer it may even appear masked. However on the other hand I don’t want to paint a false picture to any reader.

     Any outing has at risk situations. MS related symptoms of dysphagia demand attended eating at all times, including snacking. I have to be her sentinel to compensate for her visual impairment, memory loss, and mental confusion. Unattended Patti can place herself in harms way in the blink of an eye, most dangerous are choking or falling.

     Falling? How can someone fall out of a wheelchair? More easily than can be imagined. Wednesday evening I received an embarrassed call from her care facility informing me Patti had slid out of her chair. Law requires they report every such incident. Even at a 24/7 care facility with staff in abundance and an alarm on her chair, she still manages to thwart the best of defenses, if given that “blink of an eye”.

     In a social environment, a caregiver has to turn up the sentry radar. There is unseen caregiver work behind any successful outing.

Caregiving: coffee house & camera phone

     Stepping out for dessert Thursday turned into a rather interesting evening.  

    Leaving our favorite coffee house, Cassa Mani, Patti and I happened to notice the historical marker in front of the building across the intersection and learned some more surprising history of “our intersection”.

    James Wilson, 1742-1798, was born in Scotland and built a successful law practice in Philadelphia before buying a farm near Carlisle, PA where he was elected to the Continental Congress. As one of the 56 Signers of the Declaration of Independence, he was one of the “Founding Fathers” of the United States. … and prior to the Revolution lived right on this corner!

     Following the Revolutionary War and Independence his life and fortunes went more down than up including debtor’s prison and the final years of his life living with friends (or homeless in the late 1700’s).

     Interestingly, today the building where he lodged and from where he rode off from to “sign” the Declaration of Independence is the “James Wilson Homeless Bridge” providing housing and self-enhancement programs for homeless and potentially homeless single adults and families.

     … Odd how history plays out, isn’t it? And it's nice to know that the ride to Independence that left this intersection 230 years ago is still about "life, liberty, and the pursuit of happiness".

    Then back at Patti’s room we discovered a thief was busy in the bird feeder right outside her window! The tree rat wasn’t even wearing a ski mask. I guess he knew Patti was visually impaired and couldn't identify him. He had opened the top and climbed right into the feeder. Grrrrrr! Thank goodness for camera phones. <grin>

                          

Caregiving: 4th of July

The Harrisburg American MusicFest is the state’s largest Independence weekend music festival. … and even more importantly an opportunity for Patti to open up her scooter full throttle. <grin>  

Caregiving: Disney & accessibility

     In a comment a question was raised about Disney World and accessible rides. Yes Patti has been to Disney World, a couple times in varying levels of MS progression. 

     I should qualify “a couple times” before anyone thinks we are jet setters. <grin> I was raised on the Mickey Mouse Club and while my college contemporaries partied on the beach for Spring Break; I was in Orlando for the opening of Disney World. I'm addicted.

     From experience I can say that prior to Annette Funicello’s public disclosure of her diagnosis of MS and her level of disability that Disney World was “not” as accessible as it is today. Coincidence? Who cares? Both Disney World and Universal Studios are now state of the art accessible.

     One of my fondest memories involves Disney World, and an accessible cruise on “It’s a Small World”. Disney outfitted special boats for wheelchairs, scooters, and companions. Something like every 10 boats was outfitted this way. There was no conventional able bodied seating on the boats, so if there were no other disabled riders then you basically had the boat to yourself. Patti hates the “It’s a Small World” ride, and I love the ride. She agreed to allow herself and wheelchair to be exploited so I could avoid the long line and agreed to go on the “stupid ride”. … We were cruising through the ride and with no one else in our boat, I was free to sing along with the dolls over Patti’s objections. Then the greatest thing ever happened, a true Disney miracle … the ride broke down! We were stuck in Disney heaven!  … A “voice” announced for your entertainment pleasure while waiting that the famous “It’s A Small World Dolls” would remain singing. YEAH! Of course, now I had to sing along to drown out Patti’s curses and threats! It was over 30 minutes of non stop “It’s a Small World” until Disney staff came wading up to rescue Patti and pull our boat to the exit.   

     Now on the other hand when Megan wants to ‘use’ her Mother and ride something like Space Mountain with her twice because disabled riders and companions get to ride twice Patti is always up for that. <grin>

     All in all most major amusement parks are fully accessible within common sense. Frankly I used to feel somewhat uncomfortable because sometimes accessibility privileges seemed a bit unfair to those who had stood hours waiting in line to ride a popular ride. However that’s all a moot point any more with the innovation of time stamp ride passes for the most popular rides because long waiting lines exist only in nostalgia.

     What has stopped us from visiting Disney World anymore is “attended care”. Surprisingly no major park offers such care. Childcare is offered but no adult day care. Patti simply cannot endure a full day, especially weather like Orlando, FL and I cannot leave her alone in a room to nap. I was increasingly between a rock and a hard place as to what to do to accompany our daughter in the Park yet enable Patti to get rest.

     Even hiring a companion for the Park was not available the last we researched it. For example, if I wanted to get in line with our daughter for one of the more thrilling rides or even go on “It’s a Small World” which Patti will never again go near. I have to leave Patti unattended and she will very shortly get confused and roll off. Disney World is a big place.

     There are also incontinence concerns. “Family restrooms” are never equipped to lay a person down. Yet a person as disabled as Patti dependent on others for 90% of her Activities of Daily Living requires a changing area for Depends and clothing the size of a bed. We would have to stay in lodging with the absolute closest proximity to the Park (the most expensive). Should incontinence become a factor when I wasn’t immediately present the companion would have to affect the necessary changing. This is a physically demanding task. At Patti’s care facility this involves two staff members and a lift, though being macho I do manage it myself. <grin>

     Attending any amusement Park with progression of Patti’s MS has become MORE than just the accessibility of the rides. We knew how MS could progress and jammed multiple family visits into the early years. Those trips are treasured.

     It doesn’t matter whether you are living with a chronic illness or able bodied you are only given today with your family. … and it really doesn’t matter where you make the most of it.

“It's a world of laughter

A world of tears

It's a world of hopes

And a world of fears

There's so much that we share

That it's time we're aware

It's a small world after all”

Caregiving: "just seen it"?

     Sunday I walked out of Patti’s care facility to find Patti and Megan enveloped in laughter. 

     Hearing we were going to see “Superman” Patti became suddenly disappointed believing she had “just seen it”. With her symptoms of memory loss and mental confusion she can get stuck between the present and long term memory, in this case the late 80’s (the last Superman movie was 1987). Megan who has never seen a “Superman” movie in a theatre thought Patti meant she had “just seen it” this weekend. The more they talked the more confused they both became until all they could do was laugh.

     It's easy to fall into such conversations with Patti. A movie or a song can be ‘new’ to our daughter’s generation but actually is a remake or a ‘delayed’ sequel. Through Patti's MS related memory loss and dysfunction, what’s ‘remake’ got to do with it. <grin> All you can do is laugh and enjoy a truly special moment of wondering what you are even talking about. 

     They were even confusing me and I’m old enough to remember George Reeves as Superman / Clark Kent on TV in the 50’s.

     It was a fun outing spent with the latest incarnation of that “mild-mannered reporter for a great metropolitan newspaper, who fights a never ending battle for Truth, Justice, and the American Way.”  

     You cannot not like a Superman movie, unless, of course, you’re Lex Luthor. <grin>

Caregiving: modern bulletin boards

     At parent orientation one of the “transition tips” promoted by the university was to place copies of your student’s class schedule in your car, at work, and at home. After the first month of classes call them on a “beautiful Fall day” on their cell phone during the class they dislike the most. If they answer ask them why they aren’t in class and if you get voice mail, thank them for attending on such a beautiful day. <grin> 

     Through the years of Elementary & Seconday Education, I’ve taken ‘class schedules’ one step further. I scan them into my PC and make them my computer’s desktop background. Whenever I  minimize whatever I’m working on or switch programs, instantly I can “see” with a glance at the clock in the taskbar exactly when and what Megan is supposed to be doing.

     As chaotic as balancing spouse caregiving and basically single parenting has been, being able to periodically focus throughout the day on what Megan is doing, and when, during the school day has helped me to try and communicate better. For example, “I guess Calculus was useless today with the snow beginning to fall at the start of class.”

    Once upon a time, it was the refrigerator in the kitchen, but now days your PC’s desktop background is the best of possible bulletin boards.

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!

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.

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>

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 

                               http://www.myphr.com/

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

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.

     Monday

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)

     Tuesday

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. 

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.

                   

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>

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>

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.