Friday, December 31, 2004

... note from a friend

Attention span and memory are MS symptoms that can confound interaction with Patti.


Reading holiday cards to Patti though has been some of the more successful moments. Watching her light up with recognition and often have her share a memory is enjoyable.


Cards are colorful and visual. Holding them and seeing whatever she can see seems to enhance the moment for her.


Never underestimate the power of a simple card or note from a friend.

Wednesday, December 29, 2004

photograph gifts

Stopped by to visit Patti this afternoon (Wednesday)  she was still lounging in bed at 3 PM !! <grin>

I wanted to give her two bracelets she had gotten as gifts on or around Christmas and had forgotten and left at home.  …. Some article I had read recommended using your digital camera to photograph valuables, clothing, etc taken to nursing homes / care facilities. … Photos improve identification in case of misplacement, forgetting where things are left, etc.  …

A staff member walked in while we were talking and asked Patti about Christmas weekend. --- Patti explained she didn’t really do anything special, she thought she may have gone to Megan’s house for a couple hours, but maybe not. <GRIN>  …. (What can you do? At least I’m not stiff anymore <grin> )

Physical Therapy

The deck is too often stacked against home care for many benefits to a patient. The 'system' basically does not trust the home caregiver. An institution is trusted because it can be regulated.


Physical therapy is an excellent example. Through years of homecare armed with the best of private insurance and Medicare we could never manage more than a dozen home visit sessions and that was ONLY following hospitalization.


I could only shake my head as I reviewed a recent Medicare Summary Notice  “paid in full” for 43 physical therapy sessions between just October 5th and October 31st. I am glad Patti could get the help. However it is soooo frustrating that she was denied the same help at home simply because she was ‘at home.’ Same disease, same diagnosis, same prognosis, same doctors, same insurance, only difference is that she is in a care facility and not at home. 


And it is not just “running up the bill”.  Over half the sessions involve restorative eating therapy and unquestionably Patti is demonstrating positive results. The remaining sessions involve her adapting to recent progression and learning new ways to help others to help her transfer.


There are many aspects involved in the transition from homecare to a care facility. Increased options to the patient as in this example is a factor that cannot be ignored.

Monday, December 27, 2004

"... I'll Be Home For Christmas ... "


Picking Patti up for Christmas was full of high hopes only to find Patti unaware it was even Christmas Eve or that she was going home for the holidays, such is MS and memory. <grin>


Bowel incontinence torpedoed the evening’s agenda. The associated custodial care involved in clean up, bathing, and laundry was difficult. It’s been 9 months since I did this level of home caregiving 24/7 by myself or have been accustomed to the daily routine.


Patti’s strength has increasingly failed in that time and symptoms of spasticity have not only had their advent but also progressed. Wow! Does that double punch multiply the level of difficulty in handling Patti by oneself. I better understand the increasing use of Hoyer Lifts by care facility staff.  


Associated stress and exhaustion yielded to gloom, I doubt visions of sugar plums danced in anyone’s dreams.



Patti who NEVER wakes early, of course, was up early. <grin> Patti’s only remaining contribution to self care is some ability left to put on her own socks and shoes. The process of getting her up, bathed, changed, dressed, and laundry of bed linen and soiled bed clothing turns any morning into slow motion.


To balance the family aspects of ‘Christmas morning’ with caregiving is tricky. A late brunch followed by gift opening worked better than expected.


Patti’s parents stopped over in route to a larger family gathering, taking our daughter along to give her the counterbalance of an “able bodied” Christmas.


Patti’s napped the better part of the day. Her brothers and their families were able to visit later. The final guests making it just as Patti was ready for bed. Patti rallied for company and did rather well for the extra time before succumbing to fatigue and ‘abruptness’.


Repeatedly reminding and explaining to Patti the differences between  living in a home environment and care facility seemed to help extend her cooperativeness. It took effort on her part and wasn’t easy for her.


Absence of vehicle transfers and consistency of environment stacked the deck in favor of a good day. Patti wanting a good time and trying her best was the rest of the formula of success for a Christmas Day at home. It wasn’t the kind of Christmas that you dream of or sing about, “…just like the one’s I used to know…” . It was an ‘alternative’ Christmas - the best of possible.


On a lighter side, for whatever reason Teazer, our 18 yr old cat, was obsessed with climbing all over and sleeping on top Patti when she napped and slept. Patti thoroughly enjoyed this disruption. <grin>



Now THIS morning Patti slept in until almost Noon! <grin> Again we moved through the slow motion process of lifting, bathing, changing, dressing, laundry and feeding.


You cannot box yourself into a timetable with homecare. In a care facility with increased staff that is another story because you have so many people available to do simultaneous functions.


We decided to wrap up the time with a movie matinee of “Meet The Fockers”. One of those zany comedies Patti can enjoy and did. Sealing the weekend with a couple hours of laughs.


It also provided somewhat of a ‘regular’ outing ending to an unusual weekend. It seemed such a segue way might make the most sense for all.



Asking Patti if she had a good time or enjoyed the visitors or being home? She thought for a moment and responded that she, “enjoyed seeing Megan and the cats!”. <GRIN>


Only 9 months ago Patti could still assist in her own transfers, had no symptoms of spasticity, and could somewhat dress her self with minimal assistance. Now, multiple times daily needing to lift Patti in and out of bed and completely change and dress her are progressed needs and new and physically demanding caregiver functions.


I am not only sore and aching in different muscles but also grateful that we timed the transition to a care facility when we did.


Was it all worth it to have a Christmas at home? I don’t know. <grin> I just know I had to try. And Patti's smile in the last picture says more than words can ever try.

Friday, December 24, 2004

Below is our ‘snail mail’ half-fold Christmas card modified for Journal display so you won’t have to bend your screen in half.  (Remember some Christmas card exchanges are once a year communication so some information may seem redundant.) ... Merry Christmas! ...

Christmas Card

             CHRISTMAS 2004
     Some years are remembered and others can never be forgotten.
     Patti*s nearly 20 year struggle with Multiple Sclerosis progressed to a 24/7 attended care facility this past Spring. MS simply overwhelmed homecare.
     Patti is safer, no longer isolated, and in many positive ways empowered. It is complicated to speak for Patti; MS has affected so much of her cerebral functions in addition to physical abilities.
     Patti and I began the process of looking at care facilities almost two years ago when her cognitive functions were better and she could participate in the future planning of her care. Patti somehow finds the positive, once remarking, "It's almost like being rich, having ALL these people to take care of me."
     Sure I can detail the pluses and play spin doctor; yet as a spouse/caregiver of equal time it feels hollow. Under pressure for years, that defeat of home caregiving is a disheartening and exhausting transition. This holiday season has been frustrating. Even Job ranted and raved, and I can assure you I am no Job.
     Time has been so determined by MS and caregiving that family, friends, and who knows what else has been forbidden in the past and is now turned upside down. It is a confusing time like peeking out of a chrysalis into something new and unknown for each of us.
     The family benchmark of Megan's 16th birthday occurred 2 months after Patti was admitted. Balance in life, or Yin Yang, may as well be a roller coaster around here.
     Parenting time has certainly benefited. From Greenwich Villageto the Pacific Ocean, Megan and I seized several opportunities for new adventure and time together, including a 'road trip' in a convertible through the SouthWest.     
     Cyberspace joined the family when we began sharing the transition to a care facility through an Internet Journal. Originally simply to make communication easier; however it soon grew to sharing our experience with others who face similar situations. Please drop in and visit
     Holiday seasons are tapestries of memories. Good, and the not so good, are interwoven. This 2004 patch feels like it has been added with a jackhammer.
    Thank you for your holiday wishes. We, in turn, wish you joy and good tidings. We pray for peace and the safe return of the women and men of our Armed Forces.
Patrick, Patti, & Megan

Thursday, December 23, 2004

Cluster Headaches

Caregivers are not invincible, or at least I am not. The Christmas Season has held my personal kryptonite for 11 years.

Cluster Headaches ( lurk just waiting for the moment in time when the stress hits the magic mark. They will begin and I will enter Hell for between 2 – 4 months.

As a caregiver you often face the march into inevitable consequences. This journal has shared Patti’s health; I should be fair and share the health risks in my caregiving. Mine is Cluster Headaches for 11 years now triggered with the Christmas season.

As mentioned in the linked AOL Health page, Cluster Headaches are sometimes referred to as “suicide headaches” because of the unbearable pain level.

At peak I usually get two to three a night for five nights out of a week. It feels like a corkscrew twisting deeper into my brain from above my right eye for about 30 minutes of steadily ever building pain and then equally slowly out again.  Not sleeping is the only defense. After so many days and nights I of course doze off some where some how only to be tortured awake. Soon if I’m not in pain, I live in fear of its return. If God is merciful I pass out during an attack and awake on the floor or wherever. I can’t think or function. In between I become a zombie going through the motions of caregiving waiting and waiting to be dragged back into Hell.

Cluster Headaches have been my Christmas bonus as a caregiver for 11 years now. With that many annual vacations in Hell, I always have apprehensive enthusiasm for the season. In theory the transition to a 24/7 care facility reduced the stress of caregiving, we’ll see.

Caregiver health is too often ‘invisible’ compared to the person they care for.

holiday frustrations

“… That joy is greatest when the people around us are healthy and like their lives and future. But for the rest of us in caregiving roles, the holidays can be a time of great frustration …”

This simple line from yesterday’s entry has played and replayed in my head. Each year I want to believe it will be different. Somehow no matter how the formula changes the outcome still equals a time of great frustration.

Because I am a caregiver I spend time with both the able bodied and those who can no longer care for themselves. I feel and experience both worlds

This time of year unquestionably brings out the worst in people. I don’t mean outright hate but consumer driven madness and competition. Obsession with traditions that are no longer about people but status and image. Gifts are not in the least about ‘giving’ any more.

As a caregiver/spouse/single parent your world is already economically challenged, time challenged, and emotionally challenged.

I don't believe it’s that people are mean spirited. The able bodied are basically clueless.

It’s a fine line that separates Christmas from being a ‘family’ holiday or gasoline on a fire.

Wednesday, December 22, 2004

Christmas Day plans

From the Caregiver’s Home Companion:

Caregiving Tips to Make the Holidays Merry

“The holidays are such a time of joy for many people. That joy is greatest when the people around us are healthy and like their lives and future. But for the rest of us in caregiving roles, the holidays can be a time of great frustration -- our loved one is ill. …


If your loved one is in an assisted living facility or nursing home, what will work the best for them?

§        If you take them to a family gathering or to your home, will it be too stressful for them? You might want to look at how they handle it when you take them out at other times of the year. If it has been too stressful, then don’t take them out now.

§        If you don’t take them out, arrange for family and friends to visit. You might want to have people visit on a schedule on one certain day. You also need to decide how many people should visit at one time, or in one day. Think back over the year. How did they react in both situations? Use the past (especially the recent past) as a guideline for the present...."


RECENT visits home or to her parents’ home have ended up negative for Patti. Transferring and confusion, I believe are catalysts in these experiences.


We ARE planning to bring Patti home for Christmas. My hope to improve the odds is to bring her home Christmas Eve so by Christmas Day she will BE in the same environment without transferring. At our house we have the facilities for changing and bathing a wheelchair confined person and Patti can nap at her convenience. I am taking on the jobs of three shifts of staff but I have done that and am comfortable I can do it again.


Christmas Day will be a NO TRANSFER / NO CHANGE IN SURROUNDINGS  DAY. Family and friends that want to spend any Christmas Day time with Patti can visit with her at her home. Too much progression has occurred over a year and too much volatility in symptoms in recent visits makes it impractical and unfair to haul Patti around for the convenience of able bodied people. I think Christmas will be better at home than at the care facility, of course I am guilty of imposing my own able bodied and able minded thinking on the holiday. My only defense is that Lord knows it is NOT for my own convenience. <grin>

Monday, December 20, 2004

Welcome home, winter

6 AM Temp 7°F    .....   NW Wind 18 MPH

               “Realfeel Temp”  -17°F


Stepping outside this morning with a steaming cup of coffee into the predawn darkness with the cats was MAGNIFICENT!! Embraced with wind chill dropping to -17°F was like the bear hug of a long wished for friend. Welcome home, winter!!


Caregiver alchemy was mentioned a couple posts ago to “create” time.


It may seem outdated today, but years ago as a caregiver I still drew on cave walls while being put on hold. Minutes became hours and so on. One day I calculated it was actually “weeks” that I was spending ‘on hold’ when totaled together.


I acquired the necessary software and hardware to make my PC a fax machine. I started to fax my calls to doctors, labs, pharmacies, medical supply companies, etc. Because of my abnormal caregiver hours I prepared my communication overnight on the PC and faxed it out. My faxes were sitting in office fax trays when they opened in the morning, and I slept in. <grin>


To my surprise almost 100% responded most favorably. This method improved their lives also. In many cases I had answers before offices even traditionally opened for business.


‘Business’ reacts to a fax differently than to a phone call.


Additionally with the faxes I was essentially able to communicate to multiple offices at the same time, rather than have to choose which office to be ‘on hold’ with first. Another plus was a ‘paper trail’, critical with many insurance and government processes.


Email for whatever reason has never caught on. I think because one has to choose to open it. Fax drops into an office and someone HAS to deal with it. 


To be sure it did not eliminate ‘on hold’ however it so dramatically reduced it that it’s become a non factor. Most important it created time beyond my expectations, not just hours, but weeks of my life. 


As far as alchemy it didn’t exactly turn metal into gold, but for a caregiver creating time is better than gold.

Sunday, December 19, 2004

with snow falling outside ...

As distracting and stressful as this time of year can be we were successful in chipping out some family time today.


I’m slowly learning to call ahead and advise Patti’s unit staff of our plans to pick her up and take her out. More often than not they are able to adapt their rotation and change and dress her by the time we get there. It really is a luxury and time saver from a caregiver perspective.


We popped out to the movies to see the opening weekend of “Lemony Snicket's A Series of Unfortunate Events” starring Jim Carey, Meryl Streep, Jude Law, … Patti could easily follow the mini stories within the story and laughed her way through the antics of the villainous Jim Carey.


The ongoing “restorative eating” therapy at her care facility continues to have wonderful success. Monitoring her consumption of bag of buttered popcorn was never easier. Re-learning to eat and pace herself even allowed for a fun food stop on the way back. Time out together without choking or accidents is a gift.


No question about it Patti is benefiting from 24/7 care. Slowly we are learning to best use those benefits to maximize time together. We even had time to read her some newly arrived Christmas cards and put up some more decorations before tucking her in for her mid-day nap.

However, the best part of the day is typing this with snow falling outside and a fire in the fireplace. <grin>

Thursday, December 16, 2004

Caregivers MUST “create” time

Caregiving can all too often be focused on the mundane. Countless hours of the caregiver are consumed by paperwork and more.


You would like to think you are doing something valuable or noteworthy. Yet, time spent “on hold” quickly becomes hours. Paperwork becomes a full time job.


Not only do these details distract from the human side of caregiving but also they dramatically shrink your available time for housekeeping, employment, parenting, yard and garden, and the other responsibilities of a caregiver. 

Every caregiving situation is unique. I know for me hard work and efficiency isn’t always enough. Creative thinking and approaches are necessary to “create” time.

Caregivers MUST “create” time.

Tuesday, December 14, 2004

AOL Health Newsletter, Week of Dec 12th

Interesting and somewhat appropriate “food for thought” regarding MS and this holiday season in this recent AOL Health Newsletter.  A study on BIRTH month and MS risk plus the ‘hot button’ topic of stem cell HOPE. Most fascinating, NOT controversial embryo stem cells but rather stem cells taken from adult nerve tissue. And last but not least “STRESS LESS” …

[click on highlighted headline for full stories]

Picture from Hometown


Health News Headlines


Birth Month Tied to MS Risk

Which month carries the highest risk of MS and which has the lowest? Plus, find out what this research says about the possible origins of the disease.


Stem Cells Hold Hope forMS

Stem cells might be able to reverse damage caused by MS. How far away is the technique from becoming reality?




This Holiday, Stress Less

The holidays can provide plenty of joy. But they can also give you extra helpings of all the things that can fuel MS symptoms. Check out these expert tips for taming the stress.

Monday, December 13, 2004

We are NOT the Cratchit family

Sunday evening was disappointing. We hoped to wrap up holiday lighting and decorating. Patti was in a rotten mood when I picked her up and unable to associate any particular reason. MS fatigue was apparent and transferring was difficult.

Negative energy seemed to snowball. I felt more like a cowboy than a caregiver herding tasks into available time. Patti’s ‘wants’ to get back and go to bed rapidly deteriorated into demands. Total elapsed time: 2 hrs 30 minutes.

Obviously this particular holiday season is under unique pressures and seen through a different emotional veil. Living with MS in the family has always been challenging. While Patti is safer and better cared for with 24/7 attended institutional care, family dynamics are puzzling.

Last year, home caregiving had reached such an overwhelming level that a Christmas tree was brought in but never even decorated. If one gauges life in terms of completion of Christmas tree decorations than this year is better than last <grin> even though downsized and forced.

Living with MS in the family, or living with any disability or physical challenge can be so frustrating trying to find peace in the holiday season. Health is so underappreciated and taken for granted by so many. With progression you can find yourself outside looking in and challenging some basic premises.

Christians celebrate the birth of Jesus but forget his adult life when he expelled the merchants from the Temple. In Christianity the body and mind is the Temple. How ironic that the merchants have turned the celebration of Jesus’ birth into the super bowl of merchandising.

I wonder if the warm and fuzzy “Tiny Tim” is a help or a hindrance? “Tiny Tim” has enshrined the disabled in the pantheon of holiday characters.  Charles Dickens himself suffered from epilepsy; but did he really know much about the challenges of living with a physical disability? We are NOT the Cratchit family.

Fortunately there IS Santa Claus  …. (or I would have given up long ago)
     “Yes, Virginia, there is a Santa Claus … He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. … in all this world there is nothing else real and abiding. … “ Francis P. Church

Thursday, December 09, 2004

Christmas Tree shopping

Wrestled a nine foot Frazier Fir from the local garden and nursery center home into a tree stand on Wednesday evening. We included Patti in the plans without too much challenge, and she seemed to enjoy the outing.

Interesting how our senses compensate. Because of Patti’s visual impairment we debated whether she would even enjoy the trip as she cannot appreciate the visuals such as lawn displays, store decorations, etc. What she missed on the ride she gained at the nursery with roll in potpourri.

From a wheelchair perspective a Christmas tree lot may be better than the ‘woods’. Nice paved surface to roll around on, up and down aisles of trees. No obstacles or hazards to worry about. The scent of being surrounded by cut evergreen trees, wreaths, and boughs was an absolute treat for Patti..

Tuesday, December 07, 2004

This was not in the plans.

Caregiving over time created a 'black hole' into which disappeared the thoughts, feelings and passions of the caregiver.


Three fourths through this transitional year and unexpectedly that 'black hole' is beginning to reverse itself. Lost pieces of me are starting to come back.


Confusion is unsettling. Stoicism was my keystone of caregiving. Too often, I ‘feel’ like I am in an emotional rip current.


This was not in the plans.

Monday, December 06, 2004

MS kind of turns you into a cat

Mowing the lawn Sunday just didn’t seem right. I’d RATHER be shoveling the sidewalk.

Stopping by to pick up Patti for a dinner at home, she was still in bed at 4 PM! She claimed she felt like spending a lazy day in bed. Hey! Why not?

Wanting to spend a lazy day in bed doesn’t always require a medical diagnosis. <grin>

A couple hours at home, Italian carryout, and Patti was ready for bed by 7:30 PM

I exclaimed that she had ONLY been up a couple hours! Noticing how one of our cats had only awaken long enough to move from sleeping in front of the fire place to jumping on her lap and going back to sleep, she pointed out that MS kind of turns you into a cat. She "had been up long enough and was ready to go back to sleep."

Thursday, December 02, 2004

Care Plan Review

Wednesday was a CARE PLAN REVIEW meeting at Patti’s facility.


Assisted Dinning Room was the lead topic. It was a change since our last meeting, though in my opinion that is the proper placement for Patti. No “ifs ands and buts” Patti absolutely must be monitored and assisted when eating. It’s taken 8 months but we all seem to be on the same page. <grin> That’s not surprising to me, even among family and friends I’ve fought an uphill battle over Patti and dinning.


They label it ‘restorative eating’ and don’t just feed Patti but work on therapy for living with Dysphagia. I must say I have noticed recent improvement in Patti’s dinning behavior when out or at home. She is much more conscious of the consequences of either choking or vomiting that can and will occur when she eats beyond her abilities.


Patti’s early bed time was another round table topic because it has a ripple effect across many departments. Bottom line is that Patti’s insistence upon going to bed at 7 PM or often immediately after dinner short circuits most evening procedures. Often whomever is available simply assists Patti into bed ‘as is’, raises sides on bed and appropriate staff come around in turn to change and dress her later. Behavior problems related to bedtime through safety concerns over risk of Patti falling trying to climb into bed herself have necessitated this process.


(MS progression has created significant challenges for Patti in Cerebral functions. Emotional Lability, for example, can stun new or temporary staff with the spontaneity and intensity of a mood change if Patti encounters stress when she wants to go to bed. She cannot always regulate the appropriate emotional level or even assign the correct one. She cannot always process or reason through a verbal command. Telling her “not to get into bed”, will not stop her from trying and falling even though she “knows” her legs do not work.)


Related, Patti had raised to me that she thought she was not getting her sleep medication. A check of her records confirmed this was basically true. I learned that what was happening is that Patti’s sleep medication is “upon request of patient” and at 8 PM medication rounds, Patti was sound asleep. It is not their policy to wake a sleeping resident to ask them if they want their sleeping aid. Makes sense to me.


Related personal hygiene questions about bedtime care, brushing teeth, etc also fell into this category. Patti refuses to get back up out of bed later to use the sink when dressing attendants come by to change and dress her for overnight. They do the best they can at this point as if she was a bed ridden patient.


Even her bed time snack of PBJ sandwich and chocolate milk a long time favorite has gone unclaimed from the snack cart for much of the last two months, as she is already asleep by the time the snack cart comes around.


That tunnel vision about getting to bed is a function of the MS fatigue factor. Yet like 'all things MS' it is unpredictable because other nights Patti willingly participates in evening activities.


Physical Therapy had begun following last care review to improve Patti’s ability to assist with transfers. She had been tucking her legs up and they are noticeably straighter now when she pulls herself up. Rather than an ongoing physical therapy, it will be used as needed to address problems in her ability to assist in transfers. This I agree 1000% with.


Previously they were engaged in a program with a goal to get Patti to walk. Patti's inability to walk is not just related to MS physical progression but mental progression. Failure of the walking program had led to abandonment of physical therapy.


Addressing Patti's ability to adapt to each level of progression is the best that physical therapy can provide. In Patti's case it cannot reverse anything. Enabling her to assist staff in her transfers is the best goal at this point.


Toileting Experiment had just begun. This also enabled because of improvement in ability to assist in her own transfer following physical therapy. Too early to evaluate. In concept, monitored time is devoted daily to using a commode with assisted transfers. Extraordinarily labor intensive program; however the theory is to reduce sheer volume of daily bladder and bowel incontinence and as a result potential for associated rashes and infections. – The time and personnel hours involved could only happen in a care facility however if successful in reducing cost of associated medical risks and treatments necessary it would be more than positive.


Though brief these reviews are excellent opportunities to talk 'across' and with their shifts and departments. I’ve learned that in homecare symptom management and issue management are the same. In a 24/7 care facility they are not. The management of teamwork is a different world than ‘hands on’ homecare. At these reviews the minds can come together and share.

Tuesday, November 30, 2004

Macy's Parade 2004

Parenting has been critical to balance in caregivng. That yin yang like relationship, between parenting and Patti’s progressing disability has in many ways kept me sane. Macy’s Thanksgiving Day Parade for the last 5 years has been momentous in that relationship.


New this year, to us, was viewing the balloons at ground level the night before. Heavy rain and traffic accidents extended a 3.5 hr drive into 6 hrs, missing actual balloon inflation. In spite of this, the event was impressive and unbelievably crowded considering weather.  


We stayed on the upper west side at the Hotel Beacon . Only a couple blocks from the start of the parade route, and where balloons are tied down, the hotel is a true treasure find in NYC.


After the parade, since the weather was a mind boggling 60 degrees, we went hiking in Central Park.


We began only 5 blocks from the hotel at Strawberry Fields Memorial across from the Dakota building where John Lennon was assassinated.  I was actually in New York that night when Lennon was killed, and like thousands of others I drifted to the Dakota before the night was over.  It was weird to be there again. Megan on the other hand wanted to go because it was the "real" location of the “#1 Most Infamous Moment in Rock n’ Roll History” according to MTV. It was odd but at the same time kind of cool to talk about it as we entered Central Park through Strawberry Fields. Megan is not a Beatles fan so it was 'refreshingly different' to walk through a temple to John Lennon and hear why Queen was a better band than the Beatles. <grin>


Ahhh! To be 16 ...


Best of all the new memories … I sat in the passenger seat while Megan DROVE us out of NYC. In East Coast driving mythology, driving in New York City is the Big Apple <grin>. Megan wanted to give it a try. There comes a point you have to believe in both your teaching of driving skills and your child. I just never thought that moment would come in the middle of New York City in the rain which had just started falling. Megan headed out through cross town traffic, down the disguised race course known as the West Side Highway, into the traffic merge for the Lincoln Tunnel which is really a big game of chicken and out into the megaplex of superhighways of New Jersey. Her driving was confident and properly aggressive for Manhattan. Her only improvement is needed in horn honking, cursing, and hand gestures. <grin>


It was good a time with new memories. Thanksgiving has always needed its share of counterbalance.

Monday, November 29, 2004

AOL Health Newsletter 11/28/04

Picture from Hometown


Health News Headlines

New MS Drug Available

The FDA has approved the first of a new generation of multiple sclerosis treatments that fight the biology behind the disease rather than just the symptoms.

Windmills & Dragons (REVISITED)

I am NO SAINT. A 'survivor' at best. Some have asked about feelings or why?


Honestly sometimes hate has motivated as much as love. Nobility was lost in the mud long ago. Maybe many reasons have come and gone in 18 years?


A painting of a battered Don Quixote hangs in my bedroom. I think he would have understood.


(Caregiving has dark and light sides. This journal entry was previously posted in early May when this 'journal journey 'began.)

a grumpy person?

Patti was in an odd kind of mood Sunday, repeatedly claiming she was a grumpy person. Always has been and so on … This is actually the furthest thing from the truth.

We had picked her up for dinner at her parent’s home. In theory a multiple opportunity to get out, get some non-institutional food, visit with family, and play some games.

Though her mood did improve a bit, by the return trip she had slipped back into a full blown funk plus reported being super tired.

It was an hour past her preferred bed time. An hour to an able bodied person is an hour. With MS fatigue it can seem exponential.

People with MS can have bad days like anyone else regardless of MS. Living with MS in the family you learn not to micromanage.

Sunday, November 28, 2004

holiday confusion

We made a visit fit into Saturday's schedule. Found Patti watching TV and spent some time Christmas decorating Patti’s room before dinner

Patti seemed to be having a confused day. I could almost relate because, to me, this season seems particularly ‘out of sync’.

It may have less to do directly with MS, then with us all mentally and emotionally as a family facing the challenges of this particular holiday season.  

Saturday, November 27, 2004

Tell the world, organize, find and destroy beaming sources

“The words of the prophets are written on the subway walls” or at least that is what Simon & Garfunkle sang in 1965. In the new millennium they are at the Macy’s Parade. 
[the poster reads…] "Secret remote-site based long-range military intelligence weapon array is physically beaming mind control directly into people’s heads everywhere. We are under totalitarianism. Whole communities, towns, and even cities are taken over and secretly being run by computers and programs by this means, including the White House, Congress, and the Courts. Mass slavery exists right here. It also beams diseases into us, cancers, strokes … Tell the world, organize, find and destroy beaming sources."

Less than one block away in the Thanksgiving Day Parade, a “Sponge Bob” balloon , the size of building, just floated  past where this modern prophet warns us of ‘mind control beamed into people’s heads’. Only New York City can be simultaneously surreal and real. I LOVE New York!

Friday, November 26, 2004

Thanksgiving Dinner

(from Gloria, Patti's Mom ,reporting on Patti's Thanksgiving Day spent with her parents and family)
Subject: Patti report / Date: 11/26/2004 10:45:17 AM Eastern Standard Time
Hi Patrick,      I hope you two had a wonderful day, ... We had a nice day, Patti was very good, a bit confused at times but she seemed to have a good time. She only ate half her dinner...I asked her if she was not hungry and she stated "if I eat too much I'll just throw it up" so she is learning to pace herself. My brother Bob and his wife Shirley stopped in and Bob really had Patti laughing.  Patti was ready to return to FP by 7:30 PM but we managed to keep her here until 9:00, she had no accidents of any kind. … Talk to you soon. …

Wednesday, November 24, 2004

Living with MS and Thanksgiving

15 years ago we spent Thanksgiving evening playing with our 18 month old daughter. Megan and the Butterball turkey took turns sliding down her Fisher Price sliding board which had moved indoors for the winter. Breaking out the Christmas stories for bedtime reading, tucking Megan into her crib, we prepared for early bed so we could all get up to watch the Macy’s Parade on TV. We had no idea it would be our last evening ever as a ‘normal’ family.


Patti had previously been diagnosed as ‘probable’ MS. Regardless IT was in remission, her symptoms had been mild anyway, we were younger, and she was FINE. We were invincible. We were both working, had a beautiful daughter, owned a vintage 1904 home, two cars, life was wonderful. It was to be a perfect Thanksgiving.


Horror waited for us Thanksgiving morning.  Patti awoke unable to see, walk, or even talk. In the blink of an eye life had changed. Patti was hospitalized and reeling with her first major MS exacerbation. Holding an 18 month old daughter, I was overwhelmed, unprepared, and facing the most desperate moments I’ve ever know.


5 years ago I awoke in New York City on Thanksgiving morning. Megan was about to perform in the Macy’s Thanksgiving Day Parade as part of the group America Sings. My whole life I had watched this parade on TV. For a whirlwind two days I had been a chaperone through rehearsals, TV sound checks, and all the behind the scenes magic that brings the parade to life. It was like walking through a dream.


Patti’s parents had generously offered to help as caregivers for the holiday. Juggling parenting and caregiving under these circumstances would have been impossible.


Standing along the parade route, obviously I couldn’t help but reflect on Thanksgiving mornings since that desperate one of Patti’s first exacerbation. Patti’s ever progressing disability versus Megan’s growth and what a long strange trip the dual jobs of caregiving and parenting had been in between..


Once the balloons and marchers started rolling by I was as mesmerized as the young kids around me were. I cheered and yelled and clapped half for survival from the cold and half for sheer glee. Suddenly Megan appeared directly in front of me and from parade formation shouted a loud “Hi DAD!” It was one of those manly-man moments when you have to choke back tears.


Patti will wake this Thanksgiving in a 24/7 attended care facility for the first time as MS has progressed. Her Thanksgiving memories are blessedly fragmented. She will spend the day at her parents’ home surrounded by siblings, relatives, and their families as she has for the last 5 Thanksgivings.


Megan and I will wake in NYC for our 5th consecutive Macy’s Parade, this visit as fans and spectators. We both know this tradition is limited. College looms after another year. It’s evolved into special father/daughter time, carved out of living with MS in our family.


Living with MS and Thanksgiving will forever be bittersweet and complicated memories.

Tuesday, November 23, 2004

FIRST snow flurries

Found Patti sleeping away at 3:30 Monday afternoon. Rousted her butt out of bed, changed her Depend, dressed her and headed off for some dinner at home. Sometimes I wonder what percentage caregiving plays in the label ‘bed ridden’?


Involving Patti and encouraging her to choose the grocery shopping we ended up with amaretto cheesecake, pears in syrup, and swordfish steaks – a fascinating combination and actually quite delicious. You might think even memorable. However upon her return when asked by the staff what she had for dinner ,,, she confidently exclaimed “pasta.”


Mike, one of the staff members, instructed me on the proper use of the Posey transfer belt (for “insurance purposes”). Though I had always seen it lying around the room, I assumed it was for staff’s own lower back support. <grin> Being a manly-man, I just pick Patti up and plop her where I need her. Actually, it’s cool; like putting temporary “handles” on a person


Patti pointed out the holiday decorating in her room that she and her parents had begun over the weekend. However I was distracted by the room across the hall with a brightly lit larger tree. Personally, I’ve always considered Christmas decorations a competitive sport. Bring it on!!


Returning home I was surprised and absolutely ecstatic as the first snow flurries of the season fell around me.  

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