benchmarks in ‘living with MS’

Monday was the FIRST day of school! More significantly the first day of school that I ever rode in the passenger seat while our daughter drove with her learner’s permit. (7 more weeks and she can take her test for a driver’s license).

A ‘First day of school’ that Patti failed to attend through all the years of struggling with MS. Frankly it was the least hectic 'first day' morning in years because Patti was safely asleep at her care facility.

MS related problems such as falls, mental confusion, and bowel and bladder accidents have increasingly complicated “first days” of school over the years.

Pluses and minuses aside it was still one of those poignant benchmarks in ‘living with MS’.

While on the topic of school and as today is Sept 2 ...

                “I touch the future. I teach"

              Christa McAuliffe, US teacher (1948-1986) born on Sep 2

                         She was the first teacher in space; 

          died in explosion of space shuttle Challenger, 28 Jan 1986

WELCOME SEPTEMBER

Clouds of fog hiding just beyond the tree line this morning was a teasing peek at Fall.

Mental Confusion

Mental confusion was far more of a problem Tuesday evening than any Presidential motorcade. I arrived around 4 PM to pick Patti up for ‘Chinese carry out’ at home.

She heard my voice in the hall and, though unable to see me, was most excited and eager to confirm that she was a grandmother. (???) She “knew I was picking her up to go see Megan’s babies!”

As I had just left our only 16 yr old daughter doing her homework and not even pregnant to my knowledge this was an interesting conversation.

Logic failed to help dampen Patti’s excitement because even when I tried to explain that Megan was still ONLY 16 and not even pregnant. Patti offered that maybe her babies had babies.

From past experience when Patti gets totally detached from reality like this (gets “totally random” as Megan calls it) it is best to just distract her. The way MS causes her mental process to malfunction it is impossible for some one on the outside to get it back on track. I have found it helpful if you can get her thinking along with you on a different track about something else then somehow the brain ‘reboots’ like a computer.

I had two chairs on a dolly to switch out with some in her room. I involved her in playing a game of pushing the dolly while I pushed her chair. It was more like a demolition derby and she was soon howling with glee

I think people in wheel chairs have a suppressed desire to ram things!

Bush to picnic here

(‘here’ is less than 4 miles from Patti’s care facility)

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

Bush to picnic here      

By Kristin Wilson, August 30, 2004

 

President George W. Bush will visit  tomorrow to watch a softball game at North Middleton Township ...

 

http://www.cumberlink.com/articles/2004/08/30/news/news01.txt

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

('here' is also close enough that the Presidential motorcade and I could be at odds trying to bring Patti home for a visit this evening. Alas! The price of living in a 'battleground state'. <grin>)

secret source of sanity

I can’t help but acknowledge our cats as a secret source of sanity through all the 18 years of ‘living with MS’! None of the levels of Patti’s progression have fazed them. Our oldest is two months older than Patti’s diagnosis.  

If you ask Patti what she misses the most living in a care facility she’ll tell you ‘the cats’’.  Makes you feel real appreciated as a caregiver.

“Ensuring Your Future..."

MSAA “The Motivator”, Summer 2004 has a fair and comprehensive article on insurance for families living with MS. “Ensuring Your Future: Selecting insurance for you and your family’s financial security” is the kind of article you want to read early and not from retrospect.  Actually it could benefit anyone unless of course you are psychic and can foretell you and your family’s health for years to come. It is not written by an insurance agent trying to sell you anything <grin>

 

The Multiple Sclerosis Association of America can be found on line at www.msaa.com  Their publications are available on line but there seems to be some delay before the most recent magazines are available. You can request a print copy.

 

What I found even more interesting as part of their redesigned web site are the "reader controlled preferences". With a click of the button the READER custom controls text size and keyboard navigation. Visual problems and spasticity are typical MS symptoms than can impair use of the Internet.

 

Like so much about MSAA this redesign is “to ease the day-to-day challenges of individuals with multiple sclerosis and their  care partners”.

 

I try to remind people that there are two MS national organizations. The other is the NMSS (National Multiple Sclerosis Society), the juggernaut with headlines and the lion’s share of fundraising.

 

At the risk of oversimplification NMSS focuses more on finding a cure while MSAA focuses more on easing the day to day challenges. Please visit them both. Knowledge is power and more importantly HOPE!

boogeyman of 24/7 care

Death & taxes used to be the proverbial ‘universal truths’ that everyone had to face.

 

A chronic disabling illness can alter lives as it did for us. An accident can change the future in the blink of an eye. Age takes its toll.  Modern medical science can keep us alive much longer than ever before.  For some this may even exceed the quality of life line. For many people this is certainly long past the line where they can care for themselves.

 

Caregiving is moving into that universal truth category.

 

Who is going to take care of ME? Can I depend on my spouse to stick around? Can I depend on my family?

 

Or … am I willing, or even physically able, to sacrifice ‘me’ to care for another?

 

Or if you want a chuckle, can I trust my insurance? Can I trust the government?

 

The childhood ‘monster under the bed’ had grown up, and become the boogeyman of 24/7 care.

 

MS forced us to deal with a reality we thought we would have decades to dodge. We knew homecare was failing. Patti needed more and a care facility was an unknown. We HAD to 'look under the bed' and separate fact from worry.

'drop in' any time of night and day

The JOURNAL era is changing the way I communicate. I know I am nudging many friends into using it to find out what is going on in our lives instead of simply trying to keep up with sending and responding to emails, phone calls, and such.

 

As a caregiver the job of ‘information officer’ is always one of many hats you wear. The journal age is time and energy saving. <grin> (for me at least)

 

“Living with MS” certainly can isolate you. Interestingly the journal era, in a sense, empowers you to ‘get out’. And enables friends and family to 'drop in' any time of night and day.

Devil’s Playground

“This is the Devil’s Playground!” loudly and abruptly exclaimed one resident.

 

What could I possibly have been doing that was so exciting you ask?

 

I found myself playing cards tonight with Patti and some of her fellow residents. Having just been in Las Vegas where any card game I observed resembled a pool of sharks this was comparatively the ‘Twilight Zone’!

 

The resident referenced above had to be 85+ years and seemed near asleep as she played except for her clockwork sudden shrieks on the morality of card playing. (She repeated this NEWS what seemed to be exactly every 5 minutes) <grin>. This served to not only wake her up but every one else who might be nodding.

 

I was surprised to find half the ‘players’ to be of Patti’s age suffering from a variety of neurological disorders and the other half to be ‘elders’. Not ONE player was competent to play their own cards and the two volunteers had their hands full.

 

In the Old West gun fire would have been flying as cheating (though I am sure inadvertent) took on new dimensions.

 

Patti won 2 out of 3 while I was there and had won the game before I arrived. Maybe I SHOULD have taken her to Las Vegas

 

Mainly I had just stopped by to check on my redecorating from the night before, as I am not a handyman. I wanted to make sure nothing had fallen off the walls.

 

Some times you just try to do a good deed and you still end up in the “devil’s playground”! <grin>

Redecorating

We dropped by to visit and redecorate this evening. Armed with a step ladder, power screw driver, and screws I am dangerous. <grin>

 

Problem with decorating any space for Patti is that you must think mega size for her to be able to see it. Contrast is also important. Light colors against a dark background, for whatever reason, improves her ability to see anything.

 

So many little things have just gone undone since Patti moved in simply because who goes visiting armed with a screw driver and screws. Most people bring candy, sweets, or flowers yet you never think how important a screw driver and screws can be.

 

We had a chance to chat about our trip and have some fun trying out different arrangements. It’s always kind of fun to change ‘the look’ of your environment.

 

Patti ‘remembered’ Megan had been away and wanted to hear about her trip. She wasn’t sure if I had been away or not. She thought I was just kidding her. <grin>

 

Last summer Megan was away on a summer school trip and I think her long term memory is stronger. Her short term memory is always a mess from MS. I think the two summers were just all mumble jumbled in her head.  Or perhaps because I have been posting through the journal and visitors sharing the travels I may have seemed closer. Whatever it’s all part of “living with MS”. You just have to work ‘outside the box’ sometimes to communicate.

 

It was fun and ALWAYS interesting. <grin> One thing about the MS damage to Patti’s cognitive process is that you have absolutely no idea of knowing where the conversation is going to go. 

On the Road Day 8: Death Valley to the East Coast

After closing the San Diego Zoo we drove about 3 hrs North West to Barstow, CA and caught a couple hours sleep.

 

In the morning we took a short hop through Death Valley cruising with the top down in the convertible back to Las Vegas to fly home.

 

With the setting sun in the East we landed at Dulles Airport in Sterling, VA.  We flew in and out of Dulles Airport so that we could take a non-stop flight to and from Las Vegas.

 

Then just a short drive back to home sweet home.

On the Road Day 7: Mexico

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

Mexico was a fascinating experience. Neither Megan nor I are much for the bazar style of negotiable pricing. However it was certainly fun and what we did buy was unbelievably inexpensive.

We drove to a Border Parking Lot on the US side and took a Mexicoach Shuttle into Tijuana and walked back across into the US later in the day.

The shuttle bus ride was actually rather eye opening in that the route looped through the non-tourist areas of Tijuana. It is truly "Third World" in contrast to San Diego. Megan and I were stunned to see warning signs along the highway leading away from the border. Back home you see yellow signs with pictures of deer, warning of deer crossing the highway. California actually has yellow signs with pictures of a family fleeing across the highway, warning of illegal immigrants running across the highway. It was the most bizzare series of signs I’ve ever seen.

The remainder of the day through evening we spent at the San Diego Zoo. We are major zoo fans. Megan was practically raised at the National Zoo in Washington DC so it takes a lot to impress us. The San Diego Zoo is IMPRESSIVE. Other zoos may have them beat for animal head counts and variety of species but no one can rival the landscaping, layout, and ambiance.

Then it was time to head north west into the desert toward Las Vegas. However not without one last California traffic jam. (Even at 10 PM on a Sunday night trying to leave San Diego!) You could not PAY me to live in that state. People LIVE in traffic. No where on the East Coast can traffic even come close to California.

Tomorrow we fly home East, ending up back in our own beds somewhere around midnight. Eastern time, I think?

On the Road Day: 6 San Diego

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

Day 6 began with a successful quest for the elusive Hollywood sign.

Then what should have been a simple 2 hr drive to San Diego became a nearly 5 hour traffic jam from L.A. to San Diego. Only in California could the car pool lanes move slower than regular traffic lanes. Half way through we took a break at a vista point so at least Megan could get her first live view of the Pacific Ocean.

By the time we arrived we settled for a Mexican dinner outdoors in ‘Old Town San Diego’ at El Fandango with strolling Mariachi musicians and all the atmosphere of Mexico but without the risk of 'Montezuma’s revenge'. This eating outdoors in the Southern California weather could easily grow on you <grin>.

We still had time after dinner to be tourists in ‘Old Town San Diego’ for an hour or so before beginning our evenings "Ghosts and Graveyard" Tour of San Diego after dark.

Several years ago in Williamsburg, VA we inaugurated taking the ‘Ghost’ tours of whatever city we were visiting instead of the conventional day tours. You basically see and learn the same knowledge except with a different twist.

Tomorrow we plan to visit Mexico for a couple hours and spend the rest of the day in San Diego before heading north toward Las Vegas. The following day we fly back home.

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

(from Patti's Mom) Hi Patrick and Megan,

We drove up to the craft show expecting to take Patti shopping there BUT she surprised us and had already did her shopping....I do not know who pushed her around but she had purchased (I think) two Tshirts and a ring for herself. Hopefully you set up an account for her because we could not find out how she purchased anything. (grin) It was really a very nice craft show....many, many stands which had to be held indoors due to very, very rainy weather. Harold and I looked over all the stands with Patti and we purchased a few nice, homemade items. An old friend of mine that I did not see for 10 years or more was manning her stand of beautiful scarves, etc. We then went back to Patti's room and played two games of Trivial Pursuit and watched some of the Olympics with her before taking her over to her dining room. It was a very nice visit and I have not seen Patti so jovial...I think she misses shopping. Hope you two are still having a wonderful time.

On the Road Day 5: Los Angeles

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

 

Day 5 with no hotel change nor travel was just a day to play for ‘kids of all ages.’ We spent the day at Universal Studios, riding rides, watching shows, and touring studios. It was nice to leave reality at the gate and disappear into the make believe we’ve come to expect from Hollywood.

Not a big picture taking day as roller coasters, water rides, and such are not exactly digital camera friendly.

I personally found it most fascinating that on the opposite side of the facade of Whoville from "The Grinch" is the Bates Motel set from ‘Psycho’ . Some set designer had a warped but creative sense of humor.

We finished the night at Universal City Walk with dinner at the Hard Rock Café. While an 80's tribute band played a live outdoor concert we dined at an outside table on a perfect Southern California night.

Patti if you remember the last time we were in LA pre-MS it was nearly the same agenda except we had the small earthquake to make the trip ‘special’.

Tomorrow we are off to San Diego.

On the Road Day 4: Los Angeles

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

Morning 4 we have time to enjoy the grounds of the 29 Palms Inn and the Oasis of Mara which it surrounds.

We have an appointment at the Integratron in route to LA for a sonic bath rejuvenation. (I found the place while net surfing in preparation for this trip.) Strange as it may seem, and unusual as it WAS, it produced both extraordinary relaxing and energizing results. I DO NOT relax however I LOVED the time there and genuinely relaxed for the first time in I don't know how many years.. Great people and well worth the detour if in the area.

Entering the smog cloud masking the LA area is MOST noticeable if you have just spent 3 days in the near pristine desert air. It’s almost sensory overload between smog, noise, traffic <grin>. Ah! The price of civilization!

We’re staying in Hollywood Hills so we checked in and walked around Hollywood Blvd looking for stars on the walk of fame, then continued the tacky tourist experience by taking a  "celebrity homes" tour van.

The tour was somewhere between being held hostage by a bad comic posing as a driver, to a pseudo stalker posing as a driver. <grin> If it had lasted one more minute I would have had to "kick out back window in emergency" to escape..

We cruised Sunset Strip in our convertible a couple times before settling in for a late dinner at a sidewalk table at Mel’s Diner.

When traveling with me any day can go from rejuvenation in sonic chambers in the desert to cruisn' Sunset Strip. Why hold back?

 

On the Road Day #3: Joshua Tree National Park

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

 

"London Bridge is falling down ..." Who would have dreamed that childhood rhyme could end up piece by piece reassembled in the Arizona desert? The ironic twist is that when I was just a bit younger than Megan I visited the exact same London Bridge with my parents when it was still in London!!

Still avoiding major highways we headed West into the Mojave Desert for California and the Joshua Tree National Park. After 100+ temps, rock climbing, gecko chasing, and Joshua Tree picture posing we ended up in TwentyNine Palms, CA.

29 Palms Inn is a desert getaway with isolated adobe bungalows on the fringe of Joshua Tree National Park. It is a lodging oasis from conventional motel/hotel fare. Walking back from the inn restaurant the darkness is darker than you can imagine. The only sound is the noise of your shoes crunching in dirt. Suddenly the warped howling of a pack of coyotes closer than want but invisible in the darkness shatters the solitude. Somehow it all leaves you feeling a sense of the timelessness of this piece of earth. .

There is more than just beauty in the desert. it borders on the mystical. In the morning we say good bye to this ‘Walden Pond’ of the West and head to Hollywood, CA!!

On The Road Day #2: Rt 66

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

 

Thought we would never get out of Vegas though a comedy of errors exclusively mine that kept delaying our departure.

Once on the road and over the Hoover Dam we jumped off the Interstate and onto ol’ legendary Rt. 66. "You can get your kicks on Rt. 66".

The Interstate era has left the road abandon and kind of spooky. Driving the mountain terrain was stressful with continuous S-curves with no shoulders nor guard rails.

At the summit we pulled over and hiked up to an overlook where we found a boulder emblazoned with "Dead Men Tell No Tales". After a bit more looking around we found several crosses and small home made family shrines on the mountainside for those who have died on that section of Rt. 66. Markers honored an 80 yr old couple, a family of four, a 39 yr old biker and more who lost their lives on the "dead man’s curves" of Rt. 66.

Little did we know that was just the beginning of strange. We soon watched road runners race along the road, a town half out of the distant and recent past suddenly appear, a mule wandering down Rt. 66 stopping to nurse it’s young, a desert oasis, a desert thunderstorm and even rarer desert rainbow.

We returned to the Interstate just as the light of day was fading. With a safe road within sight we stopped to watch sunset over the desert before continuing our quest for the London Bridge in the Arizona Desert.

We crossed the London Bridge a little after dark and checked in for night #2.

Only in America can you leave an artificial Paris in the morning and end up driving across a reconstructed London Bridge by night. <grin.

On the Road Day 1: Las Vegas

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’ ]

Today was a LONG first day, departing from home at 3:30 AM Eastern Time and getting to bed at 2:30 AM Pacific Time !!

It was the critical first day and the completion of our daughter's 16th birthday present. She wanted to attend the opening of "We Will Rock You" a musical based on the music of Queen which opened this evening at Paris Las Vegas for a 10 yr contract.

"We Will Rock You" was AWESOME! Witty, irreverent, stunning costumes, sets, choreography and above all it most certainly ROCKS! Our tickets were FRONT ROW center section!

Additionally we got to witness a somewhat unusual thunderstorm in the dessert today. Anything to fill the time until show time. As someone who never has understood the fascination with gambling I will always be amazed at the thousands who sit and spend millions playing games they cannot win!!

Tomorrow the top comes down and we head off into the dessert for some driving down Rt. 66!

while traveling

[Note: While traveling my daughter and I will experiment with using this journal to communicate TO Patti through her visitors. MS symptoms impair Patti’s ability to use a personal computer. It’s all part of the adaptations involved in ‘living with MS’.]

Medical power of attorney

Among the many hats a caregiver wears is the power of attorney.

 

Too often in the standard paperwork the person with power of attorney is empowered to ‘designate’ a surrogate however that takes time and legal paperwork, often notarized paperwork.

 

Whether medical or general it is MOST useful to have a pre-designated alternative should you be unavailable.

 

Obviously should something catastrophic happen to you it is critical but also for simple convenience. For example while I’m traveling out of state, Patti’s pre-designated alternative (her Mom) is instantly and legally available.

 

That smooth transition can make such a difference not only in daily advocacy but in precious time should an emergency arise.

 

Also by “pre-designating” the person establishing the power of attorney can state their preference for a surrogate rather than their attorney choosing some one they may not be comfortable with or even know.

 

Sometimes it is worth looking beyond the first layer of a concern and solution.

Friday the 13th

We dropped by for a Friday the 13th evening together. <grin> We picked up some ‘Blizzards’ from Dairy Queen for a treat and spent some time just chatting and watching some American Film Institute program on Top 100 Movie Songs.

 

It was only early evening but it was one of those nights where fatigue was driving the agenda for Patti. Everything gets somewhat discordant for her at times like that.

 

We left her a bit early so staff could get her ready for an early bed. She was looking forward to slumber land.

"We Will Rock You"

Megan and I are preparing for travel. Next week we are off to the South West. Beginning in Las Vegas for the premier of the musical based on the music of Queen at Les Theatres des Arts at Paris Las Vegas. Then renting a convertible through the dessert country to Los Angeles and San Diego before flying back home. (Air fare was a no cost item through some VISA travel points piled up over time.)

 

This kind of experience just hasn’t happened before BECAUSE of caregiving concerns and worries. First of the major ‘crack in the chrysalis’ experiences for us.

 

Including Patti was certainly considered. Near daily bowel movements in Depends, and increasing spontaneous vomiting would change the entire focus and nature of travel. Dessert heat and a daily car travel would be hell for her.

 

Instead Patti is safe and secure and we’re off on a father daughter road trip. I KNOW I won’t get many more chances at that. <grin>

 

However, a part of me is paranoid and keeps waiting for MS to somehow blast our plans out of the water. 18 years of history is tough to ignore, but I'm trying.

from Patti's Mom ...

from Patti's Mom ...

     We had a very nice visit with Patti, she was in a very good mood and helped ME win the Trivial Pursuit game!!!
     Would you believe the final question for me was a sports question? What team lost the most World Series? (Super Bowls) Patti popped right out with "the Minnesota Vikings" and she was correct, we all had a good laugh over that one because Patti usually never answers a sports question.

[Note: I probably have mentioned before but one of those odd aspects of Patti’s progression in memory related problems is while increasing problems with short term, her long term has flashes that can amaze you.]

tough to be 16

Bringing Patti home for an evening is increasingly unpredictable or at least it seems that way to me. In an effort to keep her ‘involved’ we try to include her in being around a couple evenings a week.

 

I’m learning that an evening at home could be boring contrasted to activities and interaction in a more institutional environment. Then again there is the factor of “attention”. I'm noticing Patti getting impatient when she is not somewhat promptly 'attended' to. Having a staff of attended care professionals can somewhat spoil a person.

 

Trying to accomplish anything when Patti is about can have rather dubious chances of succes. Moments of frustration for all are common. A sense of humor has to be a common thread or the whole experience will come unraveled. Sometimes you have to dig REAL deep to find that sense of humor.

 

When you don’t see a person every minute of every day you also tend to ‘notice’ subtle changes in symptoms. MS symptoms can be quite dynamic and ebb and flow over days. Patti could seem ‘better or worse’ depending on when you last visited.

 

The evening did have a peculiar twist. Megan is working on a summer project on presidential elections. Like many teenagers, the fact that she cannot vote can get her up on a soapbox of outrage! One aspect of her project is to interview ‘voters’ as to what they really know about the issues.

 

Patti's MS related problems with cognition, reasoning, and memory were rather accelerated last night. Needless to say Patti’s ‘interview’ was quite enjoyable. Poor Megan could only seethe in frustration as Patti among other unique perspectives attempted to explain the “independent” candidacy of Ronald Reagan. <grin>  (Patti ‘knew’ Reagan had been in the news recently.) Megan may never recover that Patti has the right to vote but she does not. <grin>   -- It’s tough to be 16!

MS & Parenting

In a new book, The Ten Basic Principles of Good Parenting, Laurence Steinberg, PhD offers the 10 Commandments of Good Parenting

 

#3 Be involved in your child's life

“… means sacrificing what you want to do for what your child needs to do. Be there mentally as well as physically."

 

When this all began, Patti and I read Mainstay by Maggie Strong which chronicled their family’s struggle living with MS. Their admitted errors in parenting (in retrospect) by allowing MS to drive the family agenda frightened us.

 

We often quipped we could never find any advice on what to do, just what had failed for others. Aware of ideas that had failed we figured we could at least work out a plan to swim upstream rather than downstream. The advice derived from Mainstay was that the needs of the child MUST be the focus of the family not MS.

 

I guess it’s somewhat reassuring 16 years later to find our improvised philosophy on ‘parenting with MS’ to be confirmed by social science research.

 

That may sound inspirationally simple and logical but required great sacrifice on Patti’s part to put the fight of her life in the back ground.

 

MS denied her the conventional skills of parenting. Yet through sacrifice she successfully participated in raising a daughter to the age of 16 (who is every bit a normal 16 year old.

 

Physically and mentally disabled and fatigued with MS Patti is in a transition fading out of our daily lives. Her example of “…sacrificing what you want to do for what your child needs to do. Be there mentally as well as physically…”is the kind of parenting that not only can NEVER FADE but too many children never have.

a crack in the chrysalis

I’ve used the word 'transition' throughout this journal. … the transition to the nursing home era.

Transition … tran·si·tion: noun (from Latin transpire) a process or period in which something undergoes a change and passes from one state, stage, form, or activity to another

Encarta® World English Dictionary [North American Edition] © 2004

That’s what dictionaries tell us transition is. Never has the word transition been as dynamic as this past weekend. While our lives have been open everything has been somewhat insulated, essentially wrapped in a caregiving cocoon.

Swamped in the daily routine of the responsibilities of Patti’s legal and medical advocacy I lost focus that Megan and I are also both in a significant chrysalis stage.

That chrysalis began to crack this weekend. The transition for Patti is a change to safety and security. Yet for Megan and me there also will be passage. Putting our teenager aside for the moment, I found myself a bit overwhelmed just entertaining short term and long term possibilities.

Home caregiving at Patti’s level of need eliminated planning (maybe even dreaming) because the probability of a change in symptoms or progression made all such energy an exercise in futility. You just stop trying.

With Patti’s safety and quality of life assured, the ‘transition’ is ALSO a most dramatic change from one state of living to another for us. While yes I was aware changes would affect us that really had not sunk in. Peaking out through the crack in the chrysalis this weekend was strange, apprehensive, and exciting.

What brought about this crack? I guess a combination of good friends and family friends that have never let go. Or maybe it was just time?

Former neighbors visited this weekend. Patti’s former ‘disability suite’ had recently been converted by Megan and I into a pseudo family room / guest room (or fall back to disability suite if need be). For the first time our home was about human interaction without the advanced level of Patti’s MS dominating the agenda. I’m still amazed at how much that affects even the littlest things.

Wanting to visit with Patti simply involved hopping in the car and riding 20 minutes to her care facility. Giving them a tour of the place, Patti even remarked about all the help and facilities “… it’s almost like being rich ,,,”.  Another one of these remarks Patti surprises me with unexpectedly. Yet taking time to think from a disability perspective instead of mine, 24/7 attended care, every meal in a hotel like dinning room, beautiful tended gardens (with paved paths)  gazebos (with fans), and daily activities from bowling to movies to bingo IS something nice to show off.

As our neighbors headed home we took Patti to her parents for the day.There conversations with family and dear family friends included upcoming trips, my journal, and new employment options now that Patti was in facility care. Also when chatting with our former neighbors actual conversations were held about what I might do now that Patti was cared for such as keep or sell the house, change in employment etc.

To a reader such conversations may seem common chatter but any talk about what I might do has been bizarre to say the least. Such thoughts were quickly filed away and stamped “increasing caregiving needed”.  

No question the weekend cracked the ol’ chrysalis. I feel good that Patti seems to be in a successfully orchestrated transition to a better stage. Looking out through that crack I wonder if for Megan and I this passage might not border on the metaphysical. Instead of a transition, we might kick right through that cocoon to metamorphosis. <grin>

South Beach Diet

          “How to Survive When a Spouse Gets Sick

           Here,The Experts Offer Coping Clues”

     … How do you learn to take time for yourself  

              without feeling guilty?

      If you need a rationalization that works in the public eye, 

     you could say, “I won’t be a very good caregiver if I don’t

     do [something good for myself]” But even if others don’t

     give you permission, you should do it anyway, it’s important

     to feel that you yourself are not sick. …

 

The above excerpt is from recent NMSS MSCONNECTION #3, Spring ’04.

 

Today is the 7 month anniversary of my beginning South Beach Diet. In retrospect, maybe there was something more at work here. I really did not have an obvious motive, it just rather happened. The ‘discipline’ was appealing, especially through all the stress of the transition to institutional care. I lost 50 lbs in 5 and half months. It was the easiest project I have ever engaged in. I’ve been in the maintenance stage for 6 weeks now and that too is more than easy. I feel GREAT!

 

All the diet issues aside, perhaps it was really just about doing something healthy for me for the first time that I can remember since caregiving began.

 

As a male caregiver I tend to ‘poo pah’ all these ‘new age’ help articles, looking more to machismo for philosophy. Obviously you can end up at the same point traveling different paths.

 

Take care of yourself! Trust me you’ll like it!

nothing special

Thinking that perhaps the previous evening's incident was because Patti was getting a bit ‘stir crazy’. I picked her up at 4 Thursday afternoon and brought her home for the evening, returning her for bed around 10:30 PM.

 

Nothing special just dinner and an evening at home. More a slice of reality than anything else.

 

Homecare vs institutional care certainly has pluses and minuses. Such evenings are good reminders for us all how many more minuses there are to homecare anymore on a regular basis.

wheel chair ‘road rage’

I got a call tonight from Patti’s care facility. They have to report any ‘incident’ to a resident’s family.

 

It seems Patti got into an altercation with an 85 yr old guy with no legs and one eye. Staff responded to the yelling and cursing to find both slapping at each other from their respective wheel chairs.

 

(Must have been like two warships of old firing broadsides at each other.)

 

Patti claimed he had started it by grabbing her arm. However she could not remember which arm or where and upon inspection no mark of any kind was visible.

 

Her opponent claimed Patti had started it when she had “run over” him. However he has no legs making that somewhat impossible.

 

Patti's opponent has only one eye is a double amputee and 85 yrs of age. Even though Patti is only 48 yrs old, she cannot see well enough and has no eye hand coordination. Staff felt it was unlikely any blows were landed. Neither injuries nor marks were found on either combatant.

 

Questioning other residents in the proximity determined only that most enjoyed the excitement yet that most could not see that well nor really remember what had happened.

 

Staff concluded that most probably they accidentally collided in their wheel chairs since neither can see well. Each apparently took this to be an aggressive act and all hell broke loose.

 

They were separated, distance put between them, and peace returned to the unit

 

(I never anticipated wheel chair ‘road rage’ as a factor in a long term care facility. And it was challenging to keep from chuckling as the nurse so professionally recounted the above story to me.)

,,, a couple days in the life

Sunday 8/1/2004 from Patti’s Mom

We had a nice visit with Patti; we played our usual trivial pursuit game. We came home at 6:00 PM and Sharon L. stopped in to tell us she is going up to visit Patti tomorrow (Monday) about 4:00 PM and taking Patti a fast-food dinner.

Sunday PM

Megan and I arrived shortly after 6 and found Patti all alone in the dinning room. ???? When I went to sign her out the Evergreen staff thought Patti’s parents had taken her out earlier. They thought she was signed out. -- Patti wasn't much help as she thought maybe that she had missed dinner???

We took a roll through the park anyway to Dairy Queen and back. Then a little TV watching in Patti's room.

As the staff was so spacey tonight I wanted to hang around a bit to make sure they gave Patti the right medicine

(from Patti’s Mom)

We never left the building yesterday. Harold rolled Patti into the dining room at 5:20 PM. Will they ever realize that Patti cannot get back to her room on her own?

NO I don't believe that as a "shift" they can ever figure that out. I know individuals can however it all depends on many variables.

The dinning room (especially on weekends) is often staffed by volunteers and you know Patti. If someone asks her if she needs any help, she is more likely than not to say "No, I'm OK."

The fail safe is when they lock up the lobby. They would obviously notice Patti as they also lock up dinning room. That would have been 6:30 on Sunday.

As I've remarked before sometimes it's like a treasure hunt trying to find Patti when we stop by to visit. She's out so often compared to other residents the staff don't really notice her absence from the unit until some fail safe point such as meals, meds, etc..

Plus some days Patti seems to get bored and enjoys exploring the facility and/or getting around. Then I think she simply forgets how to get back to her unit. She can't get out of the building so I believe she is safe. She never seems alarmed when we find her on some adventure

8/2/2004, Monday

I stopped by this afternoon to drop off 4 more packs of Depends, some wipes, room air fresheners, and some tins of cookies for Patti & guests. I stayed around until Sharon arrived. (Just in case Patti wandered off and the desk told Sharon that Patti was out or something.)

Patti told me she had been bowling earlier in the day. I checked the activity calendar on the way out and indeed they had been bowling. They had a movie scheduled for tonight so she'll have something to do after Sharon leaves.

New Studies on MS, Stress and Depression

On the last pages of recent NMSS MSCONNECTION was a compilation “New Studies on MS, Stress and Depression”.

 

In particular a recent Danish study caught my eye. “… The investigators found that people who experienced the loss of a child had an increased risk of developing MS compared to individuals who, over a similar period of time, did not lose a child…”  “This would seem to link a significant stressful life event with development of MS. …”

 

Patti suffered two miscarriages around her original diagnosis of MS. Food for thought to say the least … in retrospect.

 

Equally interesting was that of the three NEW studies mentioned two came from countries with ‘socialized’ medicine. Isn’t one of the arguments against changing our system of profiteering in medicine that we would loose the motive for research and development?

 

I know, I know I’m getting off on a tangent and it’s not a perfect world.

rose colored glasses

Recently I was reading MSCONNECTION from our local chapter of the NMSS, specifically an article on caregivers entitled “Through the Eyes Of Love”. As a spouse caregiver of 18 years, I always read these articles with a sense of frustration. This journal was in part born from that angst.

 

As nearly infinite are the individual variables of each person with MS, the essence of MS caregiving is even more

 

Beyond the socio-economic factors of each caregiver and the level of dependency of the person with MS is the major exponential of CHOICE. The caregiver unlike the person with MS has to deal with choice at every challenge

 

WHY? is a vast and ever evolving question. “Through the eyes of love” I just feel is too “Hallmark”. It sounds nice, but...

 

I personally have found it has more to do with “true grit” than higher values.

 

“Through the eyes of love” also seems to invite judgment if it all comes apart. While the article then mentions that “not everyone is cut out to be a caregiver”, it does a disservice to label one decision over another.

 

Caregiving would be better painted like the picture of a young man heading out to war for a noble cause only to find the disillusionment of suffering. Caregiving is “trench warfare” for the long haul without glory or victory.

 

Such articles are certainly well intended. I pray caregivers may never know the extreme. And I pray those with MS may never need a caregiver relationship. However, should things start going wrong don’t let ‘the eyes of love’ become ‘rose colored glasses.’