Wednesday, November 30, 2005

Caregiving recent articles

From recent reading I've filtered out two articles I found interesting.


From Caregiver's Home Companion:

Spousal Caregiving Can Lead to Gum Disease

Stress associated with caring ... can lead to gum disease in the caregiver at twice the rate of their non-caregiver counterparts, researchers report in the latest issue of Psychosomatic Medicine....


from WebMD withAOL Health:

True View

Meredith Vieira juggles two popular television shows, kids, contractors -- and a husband who has MS.  


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Tuesday, November 29, 2005

Caregiving First Christmas Card

Popularity polls rise and fall, but it's still fun to walk out to the mail box and find the White House Christmas card!

Picture from Hometown




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Sunday, November 27, 2005

Caregiving 525,600 minutes give or take

     Benjamin Franklin obsessed about squandering time. In Ecclesiastes there's even a list of time for this and that.There seems to be no shortage of advice on time.

     MS symptoms and damage have left Patti dependent. Others must step in to affect her use of time.

     Friday her life long friend Sharon visited with Patti including a friendly manicure and nail painting. Something Patti proudly 'remembered' because of the visual and pleasant reminder of the nail polish. A brilliant use of time because it existed both in the now and also helps Patti to struggle tomorrow and the next day with fading memory as she looks at her nails.

     Saturday I picked Patti up for a day outing from Noon until 8 PM. Eight hours seems like a lot of time only to accomplish attending the movie "RENT" and dinner at home. Yet, every action requires support time, and support time always exceeds activity time. Transferring, travel logistics, nap time, changing Depends and clothing, cleaning up and laundering bed linen, yada, yada, yada ... is critical to a successful outing and support time cannot be short changed.     

"...525,600 minutes! 525,000 journeys to plan.

525,600 minutes - how can you measure

the life of a woman or man?..."

"Seasons Of Love" from RENT

Time must be literally carved out from the caregiver's, family's and friend's schedules to create time in Patti's life for opportunities. We are blessed in that 24/7 care also enables her time with attended help, people, and activities when family cannot.

     Time for each other is easily pushed aside this frantic time of year when it is easy to loose perspective. 


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Friday, November 25, 2005

Thanksgiving vagabond

Prevailing through holiday traffic in Pennsylvania and New Jersey I found myself conjuring up mixed images from our American mythology of Mayflower Pilgrims and Wampanoag Indians to the lyrics of Bruce Springsteen:


"...The highway's jammed with broken heroes

on a last chance power drive

Everybody's out on the run tonight..."


Thanksgiving dinner with my cousin's family in Pequannock, NJ was both tradition and yet different. Megan and I didn't attend the Macy's Parade this year. Megan and friends drove to a rock concert in Philadelphia the night before and spent Thanksgiving dinner with Patti and Patti's parents in Steelton, PA.


With them safe and secure, I could succumb to the vagabond winds.


New-fallen snow that faded with daylight flurried again at night like an omen to bless my drive home.


Twice I roared over the Delaware River not far from where the Continental Army in 1776 bravely climbed into some boats over the Christmas holiday to change history. Glancing up the river both times I felt "thanks". The moment was eerie.


Audio books transformed road hours into the worlds of Anne Rice's "The Vampire Armand" and Dean Koontz's "Cold Fire".


For a caregiver to simply wander was a cornucopia of food for body and mind rivaling ambrosia.


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Thursday, November 24, 2005

Thanksgiving snow

With snow falling overnight, Thanksgiving 2005 should be magical! ... Yet Thanksgiving morning is forever a bittersweet and complicated memory for me.


Time capsule - THANKSGIVING 1989 ...


Horror waited for us Thanksgiving morning.  Patti awoke unable to see, walk, or even talk. In the blink of an eye life changed. Patti was hospitalized and reeling with her first major MS exacerbation.


Patti had previously been diagnosed as "probable" MS. Her symptoms had been only a brief period of some numbness in her fingers and slurred speech. That was 4 years before (1985). She was FINE. We were both working, had a beautiful 18 month old daughter, owned a vintage 1904 home, two cars, two cats, life was wonderful. We had so much to be thankful for. It was to be a perfect Thanksgiving. ... MS had different plans.


... and a long, strange journey began.


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Monday, November 21, 2005

Caregiving: transfer board success

     To follow up the transfer board experiment, with REST for Patti, my experiment was a smashing success on Sunday    

     Bambi's recent attempt on my life only reinforced the need to reduce dependency on ME. Currently Patti's only way of getting "out" is if I am involved in her transfer. We needed a method that would be comfortable for Patti, family and friends to take her on outings as casual caregivers and companions.

     Transferring from wheelchair to car using a transfer board has repeatedly failed over the years. Only 'trained professionals' have ever tried and they tend to be locked into the tunnel vision of "conventional use" thinking.  MS, especially fatigue related symptoms are dynamic and demand innovation.

      My idea was to adapt the transfer board as an incline or improvisational "sliding board". (Maybe it's just the kid in me that still cannot resist sliding down banisters whenever possible. <grin>)

     When Patti and I work together she pulls herself up on the car door to a standing position. I pull the wheel chair away. Step in behind her and pivot her trunk into the car seat. Then I lift her legs in one at a time. 

     The experiment was to add a new first step and have Patti simply pull herself partially up just a few inches so I can slide the transferboard between the wheelchair and car seat. Creating a bridge between the two.

     Then as Patti pulls herself up a second time I simultaneously lift up the transfer board end under her which causes her too literally "slide down into" the car as if riding down a sliding board or banister sideways. Most surprising was that momentum and the natural movement pulled her feet right up and in to the car in a sitting position.

                    Picture from Hometown    

     In reality it was safer that our previous method because the wheel chair was never pulled away and the addition of the transfer board added an additional bridge between chair and car. Less effort and stress was used by all involved. With practice this could become fun. <grin>

     Saturday fatigue crushed any plans. Sunday we all spent almost 8 family hours together. Of course, over 3 of them were devoted to Patti's afternoon nap but that is "living with MS". You have to compensate for fatigue into successful planning.

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Kamikaze "Odocoileus Virginianus" (white-tailed deer)

     A friend sent me the following article from CNN Money in response to my journal entry about Suicidal Bambi:


Worst 10 states for auto-deer collisions


    I was stunned to learn that Kamikaze Bambi's kill 151 Americans a year.

     Deer hunters I salute you! Show the psychotic beasts no mercy!


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Saturday, November 19, 2005

Caregiving: fatigue IS the agenda

     How something has to be done to be successful takes creativity and trial and error to keep up with the constant morphing of MS symptoms.

     For example transferring from wheelchair to a car demands a sequence of "it depends on..., and then you do ...". Patti and I have teamed for thousands of successful transfers over the years and my role is almost intuitive, depending on how Patti moves, etc. Equally important is I KNOW when a transfer is simply not going to work and abandon the plans.

     MS symptoms of mental confusion and memory loss make Patti undependable for help. This is most challenging for family or friends wanting to be casual or one-trip caregivers.

     In an effort to improve the ability of others to transfer Patti in and out of a car, I recently purchased a transfer board. I rendezvoused with Patti's parents and hoped to experiment with it.

     (I swear MS 'knows' when I am up to something) Patti was so fatigued before we started she couldn't even pull herself a couple inches out of her chair! I discovered from nursing staff that Patti did not have her afternoon nap and without a nap all is useless. The experiment will just have to wait.

     That was a little before 5 PM. I rolled Patti back in and had dinner with her while she struggled to stay awake. Before 6 PM I physically transferred her into bed, tucked her in, and she was sound asleep. <grin>

     Fatigue IS the agenda with MS, no matter what a caregiver has planned <grin>.

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Caregiving: suicidal Bambi

     Driving home Friday evening a whitetail buck leaped across the path of a tractor trailer and landed on the front of my Aerostar Van.

     Bambi's chosen moment for suicide was particularly startling as I was riding along with cruise control set for 60 mph  and had just double checked driving environment as I was aware of a tractor trailer passing me on the left and another coming up on my rear. Bambi appeared ... and disappeared ... with a thump and crashing glass (of my headlamp I guessed), bouncing off toward the 18 wheels passing on my left.

     No affect on my van's operation nor me, I just continued cruising in pace with the tractor trailers. Ford built a great vehicle when they built the Aerostar Van. Collision with 150 - 200 lb deer at 60 mph and it just drove home like nothing happened. I was STUNNED when I parked and saw the damage to the body work.

     Parked side by side with our Taurus station wagon in the drive way, I can't help but notice that the height of the impact would have slid the deer right through the driver's side windshield if I had been driving the Taurus. What a different outcome a simple twist of fate can control?

     Thursday night I had to slam on my brakes and swerve into the opposite lane (fortunately empty) to avoid another suicidal deer while driving in Maryland just outside Baltimore.

     I'm rethinking the whole big car vs little car debate.

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Wednesday, November 16, 2005

Caregiving: parents & teachers

Recently Patti and I attended parent teacher conferences. Frankly I use these conferences mainly as an opportunity for Patti to meet our daughter's teachers, 'see' the school and classrooms. 'Back to School Nights' are just too chaotic.

Logistics of building size and elevator keys complicate movement between class rooms. Conferences are best because MS symptoms require the teacher to be closer than 3 ft to be seen and conversation and processing information is "different" than in a group format. Even in a brief 15 minute conference Patti's attention span begins to drift after 5 minutes.

What was incredulous this final "Senior Year" was that we met a teacher who was "like our daughter" This teacher grew up with a mother severely disabled with MS.

In fact, it was the first time we ever met any teacher who had any family member with MS. (or come to think of it, any direct knowledge of "living with MS", that is before meeting us <grin>)

When I stop to think about 12 years of school plus pre-school and all those teachers and staff, it is sobering the uniqueness of "living with MS."


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Sunday, November 13, 2005

Caregiving family and friends make all things possible

Outings demand flexibility and creativity. On one side of the pendulum, the able bodied simply “do”. On the other side the care facility environment is “controlled”. Reality for us is always somewhere in between.


Saturday Patti’s Mom was performing with a Sweet Adeline’s group and we worked to make Patti’s attendance possible. Logistical challenges were compounded as the performance was well intended and dedicated for nursing homes and elderly however the historic theater, “The Forum” chosen has only 10 accessible seating cut outs.


Fortunately Megan was with me and a family friend Jean Faul was in attendance. Megan and I carried Patti between us from her wheelchair down a row to an available seat while Jean steadied the wheel chair. We reversed the process later to get Patti back into her chair. If Patti panics such a maneuver is risky to all because of the steeply graded, half steps, and narrow aisles in any “historic” facility. Explaining what was going to happen and talking her through the steps as teamwork executed the transfer kept it all safe.


Family and friends as always makes all things possible.


MS related symptoms challenge Patti’s attention span. The show was wonderful however both attention span and the transfer challenges necessitated we exit at intermission.


The Forum is on the grounds of Pennsylvania State Capitol. One of the hidden treasures of any State or Federal “grounds” is plenty of accessible space and statues and ‘art’ monumental enough even for the “legally blind” to see and for play. Such as the huge three dimension polygons just perfect for a game of hide and seek on a perfect Fall afternoon. <grin>

Wednesday, November 09, 2005

Caregiving and voting

Tuesday was Election Day and we continued our unbroken streak of exercising our voting rights in spite of the obstacles and progression of MS.


We discovered that our "coroner" is an elected position. Fortunately he was running unopposed.


Of course municipal elections tend to lack the voting day intensity of Federal or State campaigns. Regardless, Patti has a knack at turning voting into an entertaining experience.


We get to choose to keep or repeal judges. MS symptoms can impair Patti's ability to control volume when speaking. While helping Patti with her ballot, I softly asked her if she wanted "to keep or get rid of XXX". I do believe everyone in the room jumped as Patti yelled "KEEP HER" as if she was at a football game! This got us both laughing and wondering why.


Fortunately up here the election officials just enjoy the break from the monotony unlike Patti's infamous voting experience in Maryland shared in VOTING & MS from last November.

Tuesday, November 08, 2005

National Family Caregiver's Month

A Proclamation by the President of the United States of AmericaNational Family Caregivers Month 2005


"Each November, as Americans reflect on our many blessings, we observe National Family Caregivers Month and give thanks for the selfless service of family caregivers on behalf of their loved ones in need. The tireless devotion of these Americans brings comfort and peace of mind to our Nation's elderly and to those who are chronically ill or disabled. ..." George W Bush

Friday, November 04, 2005

Caregiving ... and playing in Fall leaves

Zooming around the field in her scooter Patti somehow manages to run aground on the only boulder in the field. Perhaps reenacting the Pilgrims landing on Plymouth Rock? (Picture 1)


A pile of leaves simply MUST be thrown into the air no matter what your situation in life <GRIN> ...  (Picture 2) 

          Picture from Hometown

A 72 degree day in Fall is Heaven! (Pictured below) An all terrain scooter only helps you get there.



Thursday, November 03, 2005

Caregiving: one morning in November

Pictured is Tuesday afternoon’s cook out, we brought Patti home for that Shangri-La afternoon. Grilling Delmonico steaks under a November sunset, north of the Mason-Dixon line, is weird but I could learn to like this. <grin>


It gets better with two seasons in one. I get my winter with an early morning kiss of frost, and a cup of steaming Italian Roast coffee while walking and crunching over the frosted grass blades. On the other hand, reality is trivial to the rest of the household. The cat demands me to flick on the gas fireplace in front of which she hypnotizes herself deep into the feline center of the universe. Also enjoying the gas fireplace, our teen age daughter needs to check her email and IM her friends who she will see ‘live’ in only a few minutes when she drives the 2 miles to school as soon as I have scraped the windshield or warmed up the car. (After all I ENJOY winter.)


Looking at Patti’s schedule, she is waking up in a toasty room with 2 to 3 attendants who will get her up out of bed with the assistance of a mechanical lift. She will be bathed, again with so many high tech devices and lifts our homecare method seems almost medieval. As Patti needs 100% assistance with all Activities of Daily Living including dressing, personal hygiene, etc., I know how long even one of these activities took to accomplish when it was just me trying to help her. With at least 2 attendants and lifts she breezes through such activities. Getting up in the morning is no longer a function of hours.


She is then taken to the assisted dinning room for breakfast. I see that today’s menu is scrambled eggs, cereal, English muffin, coffee, and OJ. Home care breakfast was ‘catch as catch can’ and frankly was often brunch as it could take that long to get her up.


For Thursday morning Patti has wheel chair exercises and then “corn pitching” for a morning activity. Tossing ears of field corn into baskets for a fun exercise and group activity/game.


By afternoon it’s back to 70 degrees! Depending on how I can juggle my day either I will pick Patti up and bring her back for a cook out or swing by with her scooter and take her for a scooter excursion through the park or on an adventure before sunset.


Weather certainly has disrupted and destroyed so many lives this year. We may as well celebrate 'kind and gentle' weather and not take it for granted.

Wednesday, November 02, 2005

A paean to those who came ...

A fellow MS caregiver spouse and resident of the Mississippi Gulf Coast forwarded me this beautiful editorial from South Mississippi’s SunHerald Newspaper: 

A paean to those who came

“… This is for all of those who cared and who responded.

     It is for everyone who helped us, however they expressed that concern.

     These words are our heartfelt words and thoughts of appreciation. They are redeemable in handshakes, hugs and in indelible memories that will be just as real as far into the future as can be seen. Our debt will be owed to the children of all of those who came, and to their children. …” 

Click the headline for the full Oct 28th editorial …

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