(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. 

Up and down kind of day for visiting

Up and down kind of day for visiting with Patti today

 

From Patti’s Mom:

…We were over to visit Patti about 3:00 to 5:30PM....she was in good spirits; we had our usual game of trivia in the large meeting room…

 

Only two hours later, my daughter and I stopped by around 7:30 PM with dessert from Dairy Queen. Patti was in their common room supposedly attending a performance by some country/western style singers. We both had to smile when we found her in a room full of people nearly twice her age; Patti was the only one sound asleep in her wheelchair right in the center of the room. 

 

Trying to quietly ‘sneak’ Patti out was shattered when she awoke with a startled yelp. Plus staff had packed wheelchairs in tight like a drive in movie. It was like a living puzzle getting her wheelchair out of the middle.  

 

Ice cream seemed to revive her for duration of our visit. We got to see her latest bingo prizes. The place has turned her into a bingo junkie. We all talked, joked, laughed and did our best to recreate time we might have spent together at home. It’s still fun and I think important to maintain some family time.

WHY THIS JOURNAL?

WHY THIS JOURNAL?

 

As new friends, family and visitors find us perhaps a reprint from the first days of this journal would be helpful. You can always read older entries by clicking on "view older entries" at bottom of journal then choosing month from pull down menu. We began in April, 2004.

 

     Reposted from May 1, 2004

                                         Is MS supposed to ...

Is MS supposed to land you in a care facility by the age of 48? Are you supposed to loose the ability to control most aspects of your body and then your mind.

18 years ago it began for Patti as an intermittent numbing tingling in her fingers that went away on it's on. At the time, hours and hours of neurological testing could at best rule out everything else, leaving the infamous diagnosis of last resort, 'probable MS. Following her first major exacerbation her diagnosis was promoted to 'MS'.

No treatment has been left unturned either traditional or 'alternative'. Weekly RX Avonex shots were no more successful or unsuccessful than an 'alternative medicine' bee venom therapy of 24 bee stings every other day for a year.

MS does as it pleases. Or in Patti's own words, "MS sucks!"

Many well intended publications publish inspirational stories of personal courage and apparent success. Hope in living with MS is critical and needs to be communicated.

Sadly the other side is too often left untold. There is equal courage in those many people with MS who struggle daily in a loosing battle. They fight to live on whatever terms and level is left to them. With daily eroding physical and mental abilities it is a fight against all odds.

Don't buy into any theory of what MS is 'supposed' to be.

By sharing maybe we can tell one family's story of the other side you don't read in MS publications. Silence doesn't help anyone.

 

Family time

Family time is still something we try to carve into the care facility era. Of course you always run the risk of seeing any need from YOUR perspective rather than Patti’s. MS and MS related symptoms can be even more difficult to predict at any given time when the family member with MS is not immediately with you.

 

Saturday evening Patti’s parents brought Patti over for a visit with our cats. “Missing the cats” is an oft remarked regret of Patti’s.

 

Overall it was as pleasant a family evening as MS is going to allow. Patti remained alert and accident free.

 

Her vision seemed to be weakening as furniture such as an 8’ grandfather clock took several moments of staring and blinking to recognize.

 

Sunday my daughter and I stopped by to pick Patti up for an afternoon out and movie. However to both our surprise and staff, she wanted to take a nap. ??

 

Fatigue is a major MS symptom and problem. With Patti it can sometimes knock out a day or be minimal. When at home, her immediate symptoms were obvious and family plans simply were never proposed nor developed, as Patti could not be left alone.

 

It was peculiar to say the least to continue with our plans especially as they had been built around including Patti. This is an aspect of the care facility era that is still so new. For 18 years, MS has controlled any social or family agenda. That Patti’s safety and attended care can be compatible with the rest of the family doing something is still a strange new world.

foggy end of the swamp

Previously, I referred to MEDICAID as a beacon.

 

As a family you are “living with MS”. That in itself is challenging but progression always looms as a possibility. Somewhat like living in a real life game of Russian Roulette where every day you get up and pray the chamber of the proverbial gun is empty that day.

 

The world around you is full of Biff’s and Buffy’s living their well lives with their well families toward their well goals. You always feel a bit incongruous to say the least.

 

Your struggles, challenges, stumbles, and even victories are essentially invisible to the well world.

 

You always HOPE that MS will not progress. Maybe just maybe life will let you live at the level you are at.

 

The thing is you somehow do handle it yourself, in our case for 18 years.

 

When and if you do have to reach out for help it leaves you feeling less about yourself. Reason and logic do not help.  After all reason and logic haven’t mattered the whole time in living with MS they suddenly are not going to kick in at the end.

 

Progression can drive you to desperation. At that foggy end of the swamp you begin to look for the beacon of medical assistance.

just a question of when

Our ‘$64,000 question’ is unquestionably painful yet could easily have become so much worse. Of course no matter how many times I say this to myself it does not feel any better and the damage to our family is real.

 

Living in denial that we could continue home care ourselves or depend on family or friends for help would have been easy. That’s why we even uprooted ourselves almost two years ago

 

At least we CHOSE to begin the process seeing this coming. Patti was still able to grasp the bigger picture over a year ago

 

Homecare was collapsing with Patti’s progression. Patti was increasingly at risk and family dynamics were spiraling apart

 

“Living with MS” DEMANDS a different management of financial planning. A long term care facility provides Patti a safe and secure future regardless of the twists and turns of progression. At over $60,000 a year (forecasted at upwards to $200,000 a year in 10 years) MEDICAID was our only real option. Applying for medical assistance devastates family finances and savings yet enables you to rebuild without skyrocketing medical care for 24/7 caregiving.

 

“Living with MS” is not a choice; it’s just a question of when you do something.

$64,000 question

Would $64,000 in out of pocket medical expenses in 12 months dent your family estate? That’s non reimbursable cash gone. That’s what we have spent in the last 12 months

Each family is certainly different and may have $64,000 a year in disposable income to spend. We are not and certainly were not such a family

Yes we are blessed with wonderful health insurance and prescription plans, even also Medicare, however when it comes to homecare and institutional care medical insurance doesn’t touch it

IF you have LTC (long term care) insurance it may cover some of that. However I suggest you check it and see just how much it would pay in a year. You might be surprised. Sadly though when dealing with a disease like MS, you are not going to get such a policy once diagnosed

Families save for a variety of dreams such as retirement, vacations, college educations, etc. However, “living with MS” so relentlessly destroys dreams just as it relentlessly destroys the myelin sheath in the body.

MEDICAID sits at the end as kind of beacon of hope for the future care of the person with MS. Dreams and families just become the collateral damage of home caregiving.

          “You can’t always get what you want

                    But if you try sometimes

                        You just might find

                    You get what you need”

                                        Rolling Stones, 1977

“I guess me being here ...

Stopped by for Patti’s signature on what is hopefully last batch of Medicaid follow up forms last night. Though I do not NEED her signature, I go through the motions anyway. 'Legally blind' and mentally confused her signature can range from a creative "X" to an entire line of illegible names. I believe that if the roles were reversed that I would appreciate the extra effort to be involved.

 

Patti was more lucid than usual and actually had questions. Of course her questions about these specific forms only demonstrated how little she really remembered or grasped of the details of the whole process which has now been going on for over a year or the actual application itself submitted on May 19th

 

Patti surprised me with a remark that “I guess me being here is helpful for Megan”.  While she wasn’t sure if Megan was in high school or college, she continued that Megan didn’t have to worry about her

 

When we first began discussing a care facility that was one of the reasons we considered. Obviously a teenager coming home daily to find her Mom fallen on the floor, or the house reeking of a bowel accident has to take a toll. Caregiving is suffocating for adults; it has to be that and more for a child. The future would only get progressively worse for both Patti and caregivers.

 

Megan has never known Patti in any role except someone she has to take care of. The traditional mother/daughter relationship has been upside down and sideways. MS has always been associated with her mother.

 

It has been a most peculiar relationship. It was good, I believe, to see that in spite of confusion over details of age and such that Patti could conjure up thoughts about the essence of that relationship.  

 

Patti was extremely fatigued and wanting to 'go to bed' at only 7:30 PM.

Blizzards & Blazing Saddles

Leaving the quandry of crystal or china to the real world, we celebrated our 19th Wedding Anniversary with "Blizzards" from Dairy Queen and "Blazing Saddles" on the TV in Patti's room at her care facility .

Though a paper cup doesn't bounce it is equally safe and "Blazing Saddles" is perfect for Patti's ability to follow. <grin> With increasing memory loss no matter how many times Patti has seen or done something, it's always kind of new to her.

Patti got to laughing so loud and hysterically the LPN's from nursing station needed to investigate. If Mel Brooks only had an audience full of Patti's his shelves would be lined with Oscars.

wedding anniversary

Today is our 19th wedding anniversary.

 

American situational comedy tells us it is not unusual for one spouse to not remember the wedding anniversary.

 

How about when a spouse cannot remember wedding anniversary, year of daughter’s birth or her age, or any other significant family milestones?

 

Traditional anniversary gift ideas would fall between crystal and china. Yet Patti can have nothing that doesn’t bounce.

 

Living with MS certainly creates its own ‘traditions’. Safety and attended care are more expensive than crystal or china and far more valuable.

 

“To have and hold … in sickness and in health …”was specifically left out of our wedding vows by Patti. Because of her recent admittance to a care facility, this is the first wedding anniversary I have actually honored those vow omissions.

Neurologist

Patti met with her neurologist yesterday. Basically it was all about a plan to increase and monitor spasticity medication, Zanoflex.

 

Onset of spasticity was the most significant change since last appointment 6 months ago.

 

Increasing vomiting was discussed and believed related to possibly spasticity, problems with swallowing, and/or bouts of coughing. There was evidence and history linking incidents to each.

 

At care facility Patti’s increasing mental confusion has necessitated attaching an alarm to her while in bed. Patti is unable to grasp how to use the call button for help.

 

Between appointments like this, previous post about Medicaid, and something as simple as Patti's inability to grasp how a call button works it demostrates how dependent the family member with MS becomes on everyone around them for just about everything.

Medicaid ... the saga continues

Almost two months after we submitted application for Medicaid (and 7" of supporting documentation) we finally heard from county assistance office requesting a few more form requiring signatures and additional documentation.

 

Ever growing pile of medical bills (now in the 10's of thousands) is frankly nerve wracking. Through the 18 years of living with MS we have always managed to avoid debt outside of mortgage. This process has been such a radical departure for us in family finances.

 

That dramatic change plus all the emotions of admittance to a care facility has made too much of the last few months seem like sleep walking through numbness and confusion.

 

The devastating impact of all of this upon each family member and their future has come roaring back. Frankly it is suffocating.

Flooded getaway

I took a couple days away from it all with my daughter. In fact the first in memory as Patti was actually safe and I did not have to worry about it

 

Yet the gods obviously felt otherwise as the pictures show. Yes there were some good times in between floods, but it makes you wonder if it isn’t some divine message?

 

Perhaps when one family member is in a care facility the rest of the family is not supposed to try to live a normal life?

Matinee

Mental confusion can even confuse Patti at times. Today we found her in bed rather down and out because she was “sick”. When asked why she thought so, she explained she had earlier vomited up lunch all over herself.

 

After explaining to her that she often vomits for no reason except MS ataxia we offered her the option of remaining in bed or going to a movie. She lit up and recovered immediately. <grin>

 

We spent a pleasant family afternoon at the movies, “ANCHORMAN”. Thankfully, no accidents to report in spite of popcorn and soda with the movie.

 

We got Patti back in time for short visit and then left her at facility dinning room for dinner before heading back home ourselves

 

Outings are simply a matter of luck of the draw as far as ‘accidents’ go. And of course that starts to affect whether you try or not. Do you feel lucky?

 

It’s somehow particularly sad when Patti’s mental confusion leads her to even confuse herself to feeling as down and out as we found her earlier in the afternoon.

Challenges

(from Patti's Mom)
Hi, We just came home from a visit with Patti....we had Lorraine along too. We drove up to Shippensburg to have dinner at "King's Restaurant" ?
Patti ordered a pina colada before her dinner of lasagna, garlic toast and salad. 5 minutes after she finished her dinner, it came back up, thankfully her empty casserole was sitting on the table and I shoved it in front of her very quickly or it would have been all over the tablecloth and Patti. The waitress was wonderful, she kept saying "no big deal"...
Patti seemed o.k. within a few minutes, but she was very, very tired and could not wait to get back to FP and her bed.
It is getting more and more difficult to take her out because of vomiting and/or bowel movements. I think we will continue to stick to her facility and just have a quiet game of Trivial Pursuit from now on.

This guy DESERVES applause!!

''Running ahead of bulls is life and I wanted to feel alive,'' said Ray Sabbatini, 36, of Wisconsin, who suffers from MULTIPLE SCLEROSIS... AOL News - Several Trampled in Spain's Famed Bull Run

Simple Time

Who knows why but we seem to have a tendency to go somewhere or plan something when visiting Patti. We got to talking about this and decided to try just dropping in and hang out for a bit. Maybe just watch TV, as frankly that would have been how we would have shared peaceful time together ‘as a family’ at home.  

Any other time would have been caregiving time cleaning up after Patti or feeding, dressing, showering her or some other potentially stressful function.

We arrived around 7:30 pm and found Patti already in bed; however claiming she couldn’t sleep anyway.

Leaving Patti in bed we just elevated her head rest and spent around 45 minutes simply chatting and watching some TV together. Maybe a future view of what lies ahead as her MS progresses? She does seem to tire so easily anymore and her increasing spasticity complicates transfers

I did practice and learn how to do a “wheelie” in Patti’s wheel chair. That was kind of cool. Her newer sports model is so responsive if the occupant has upper body strength.

It was as good as any time we would have spent together at home. Except with one big difference Patti was in an attended and safe environment both before we were there and after we left.

4th of July

4th of July has always been one of those mega gatherings at Patti’s parents’ home. So traditional you could even use it as a benchmark through the years.

It caused me to reflect on the changes of MS progression over time and how that is a bit like dropping a stone in a pond in that each year the ripples of those changes alter at least our family’s involvement.

Megan and I picked Patti up from her care facility in late morning and brought her over to her parents’ home and pool.

Fortunately it was a bowel accident free several hours which unquestionably has a ripple effect on anything. The absence of a bowel accident improved involvement and interaction with Patti.

Returning Patti in early evening she remarked how much fun she had but also how tired she was. She had no opportunity for an afternoon nap and that takes a toll on her stamina sooner than later. Plus being outside most of the day somewhat exponentially increases that toll. We the able bodied don't give much thought to July temps in the 80's at poolside. Yet for Patti's MS every degree above 72 acts somwhat like a multiplier.

Then returning to pick up our daughter I was aware one of Patti’s brother’s had set off and orchestrated a ‘legal’ fire works display kit at poolside.

Nostalgia reminded me that if I remember correctly this was a tradition we had begun years ago when traveling from our home in Maryland to PA (detouring through Virginia to pick up ‘illegal’ but quite showy fireworks). The origin was based in that Patti’s MS progression and need for a wheelchair complicated attendance at public fireworks displays and her increasing visual impairment made it less possible for her to see overhead fireworks. Again summer heat and humidity increasingly restricted her time outdoors and potential to attend public displays. Poolside fireworks were created for "accessible" fireworks.

Neither Megan nor I were even in town last year for the 4th and the year prior we were immersed in moving, so the ‘tradition’ had evolved out of our hands. Interesting it was Patti’s nieces that ‘remembered’, enjoyed and have kept the tradition alive. As the youngest, they obviously never remember Patti not being in a wheelchair nor remember the years without poolside fireworks.

Interesting how a tradition linked to MS evolves. It’s origin as adaptive to MS is lost in time. Ironically that same MS progression has increased and now so fatigues Patti that she cannot stay awake until dark to see the “accessible fireworks”.

The original MS 'ripple' has been around the pond so many times it's taken on a life of its own. And the duration of living with 18 years of chronic progressive MS has outlived so many changes and so many adaptations.

Visitors always welcome!

(from Patti’s Mom)

      Janis and Joan, drove me up to visit Patti tonight (Friday). We had a very nice visit and played a game of "Trivial Pursuit"....Patti was getting very tired by 8:30 so we came home. Patti, once again, surprised us with some of the answers she gave on some of the questions.

Able bodied day

Thursday was one of those “able bodied days”. Minus Patti we spent the day with some friends from our old neighborhood enjoying a day splashing through the water rides and coasters at Hershey Park on a hot and humid day.

 

Ideal for the able bodied, hell for MS.

Movie & Pizza

Luckily Megan and I had an accident free visit with Patti yesterday! That makes all the difference in the world. As a reader you cannot even imagine until you live through the down side and then know the up side.

We picked Patti up just before lunch and took her to a matinee of SPIDER-MAN 2, then back home for pizza on our patio

Movies based on comic books are easy for Patti to follow and comprehend. And with some research we found a mega screen showing which improves her viewing and theatre experience. Visual impairment, mental confusion and cognitive problems can complicate movie choices.

We try to find foods she never gets at care facility and dine on those. It seems Pizza and Chinese food is non-existent on the care facility menu so “Pizza on the Patio” it was!