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.’

(from Patti's Mom) ...

Hi, I just returned from a very nice visit with Aunt Marie, "Shamrock" and Patti.  We sat outside the main entrance, there was a nice breeze blowing and the dog had Patti howling. She (the dog) kept catching ants running around the cement and eating them...Patti loved hearing about what the dog was doing. We stayed until lunchtime and I think Patti enjoyed visiting with "Shamrock", we plan to go up with the dog every other week.

Visits like the above from her Mom and Aunt and dog don’t have to be dramatic or life changing. When the gift of laughter can make its way through the frayed myelin sheath of MS it’s just as much fun as with anyone else. Laughter is good medicine.

accident free visit and travel

Thursday we brought Patti home (4:00 PM) for dinner and family time. Proximity between home and care facility (12 miles away) was an important factor in our selection process. We try to have a dinner that is rarely served at the care facility.

 

Today that was good old fashioned Chinese carry out. Patti needs her food cut into tiny pieces and only one hand works somewhat well for utensils. Even though Patti wears an apron style bib when eating, Chinese carry out can get particularly messy. The aftermath often reminds me of when our daughter was beginning to learn to eat with utensils. Life sometimes seems to move in circles.   

 

Having a generous and loving friend like Jean Faul who can make these apron style bibs in so many colors and patterns is special and something you will never find covered in any MS magazine. Patti’s bibs are more than bibs they are fashion statements.

 

It was an accident free visit and travel. That can so set the tone for the whole experience

 

I had noticed from sign out sheet that Patti’s Aunt and Cousin had also taken her for an outing earlier in the day.

 

Shortly after dinner (7:00 PM) Patti began to ask to return so she could go to bed. Transferring in and out of vehicles for two outings certainly amplified fatigue factors especially as it was in upper 80’s and humid.

 

For the first time that I can recollect Patti interchanged the word ‘home’ for both here and her care facility. Her usage was grammatically correct and repeated over time so I doubt it was a function of mental confusion. It felt strange to hear her say it.

you have to try

Finding Patti napping at 2 PM today, Tuesday, we got her up for an afternoon outing and movie matinee.

 

In spite of inhaling a bag of popcorn, she seemed alert enough to follow “Catwoman” enough to decide she didn’t like it. Even though it was her expressed pick of movie choices. <grin>

 

As an accident free outing it was a treat. Patti was unusually conversational and alert for someone who ‘wanted to nap’ claiming she was tired when we arrived.

 

Sometimes I just don’t know when she IS really tired and when she gets obsessed with thinking she is tired.  I know it is hard for her to know the difference much less for anyone else.

 

So much of living with MS in a family is like fitting square pegs into round holes. Yet you have to try.

“Amarcord”

“Amarcord” is some local Italian dialect for “I remember” or at least that is what I learned from a Fellini film of that name many years ago. It’s always just been more fun to say, instead of “I remember”.

 

Thinking of finding Patti asleep in a room full of her elders last night caused me to reflect on the sleeping MS warrior. Some images leap out of the past like a montage.

 

“Amarcord” … when fatigue and strength first began to become a factor, Patti would somehow make it home from work with head held high. Unable to mount the hill and steps to our home, she would take the longer though gentler slopping path around back. Often falling or dropping to the ground she would crawl or even pull herself along across the lawn using grass, shrubs, whatever believing she was unseen by neighbors and wanting no help

 

When she finally did consent to an accessibility ramp being built it could not be ‘visible’. She wanted no image that she was giving in to MS. I had to design and build an elaborate boardwalk with rest points and oversized deck to conceal the ramp. She preferred the longer gentler slopping path arguing the exercise had to be better for her legs.

 

Transition to the electric scooter era only followed months of bitter arguments. Patti the warrior wanted nothing to do with not walking on her own

 

Once in the scooter she became a daredevil. Patti regularly headed out into street traffic, scooting along at her top speed of 17 MPH. With a range of nearly 15 miles she was all over the place. It was freedom and empowerment. Our super sized deck/ramp/boardwalk enabled her to ride directly from inside home to street and back

 

It broke her heart when vision and memory ended that era. One thing that can be said is that Patti NEVER went quietly into any stage of progression.