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.  

Sunday, November 21, 2004

level of disability

"Level of disability" is a phrase I often use in telling our story. With MS there is actually a method to quantify disability, the Kurtzke Expanded Disability Status Scale (EDSS).


8.25+ is the mean of Patti's current disability levels with some specific abilities and Functional Systems (FS) grades supporting EDSS scores ranging from 7.5 to 9.0+.


The Kurtzke Scale is not perfect. Among its recognized short comings are insensitivity to cognitive dysfunction and orientation on ability to walk. Patti’s unique symptom progression especially in these areas complicates scoring. Nevertheless, it does provide a “number” for levels of MS disability on a scale from 0 to 10.


When I refer to “Patti’s level of disability”, 8.25+ is a more visual benchmark.

Friday, November 19, 2004

changing dynamics

Living with MS can sometimes be more about living and less about MS. Tonight was a night like that.

24/7 care facility era is a major reason. When the hours before and after family time is not exhausted by home caregiving at Patti's level of disability it does change the dynamics of all involved.

Preparation, monitoring, verbal cues and assistance helped keep a public dinner an accident free experience. Dinner out and a movie (“The Incredibles”) even kept Patti out “way past” <grin> her preferred bedtime without even a grumble.

Wednesday, November 17, 2004

Prozac Nation

Even though confusing to Patti she does demonstrate curiosity. She often begins to want to know how something is done before abandoning that pursuit in confusion.

Memory related problems often surprise me with what surprises her; e.g. the price of something. Her recall can bounce all over a time line. She may interchange a comparative price from 20 years ago with only a couple years ago.

Sometimes you save the best for last, over dinner ‘seemingly out of nowhere’ Prozac dropped into the conversation between Patti and Megan. To qualify the two conversationalists; Megan is taking her first ever psychology class, reading “Prozac Nation” and at age 16, of course, knows everything … Patti, in the other corner, has been prescribed “Prozac” for years for symptoms of depression related to MS, yet cannot remember the beginning of the thought she just started but glad to personally know about something jumps right in with a dizzying fragmentation of views.  It was priceless.

All in all the afternoon and evening was interesting to say the least.

Tuesday, November 16, 2004

True Grit

On the National Multiple Sclerosis Society web page, I noticed the following promotion for NATIONAL CAREGIVER’S MONTH:


MS and Home Caregivers

"...one of the things that I think is really helpful when you're a caregiver, is to ask yourself, why am I a caregiver? Is it out of love? Is it out of duty or sacrifice, out of necessity, or out of a need for approval? I think at the beginning of a caregiver journey that the more honest you are with your emotions and with your thoughts, the easier it will be for you when you come to a time when you face something that's very difficult for you to do or something that you feel that you really cannot do."

 Karen Henderson, Caregiving specialist/caregiver's advocate



Personally, I still do not know why. I know only that each day begins with choice. I do know that as every day, every week, every month, and every year passes the progression only increases and the challenge only grows.


“Journey” is a good description, “odyssey” might be better. I wouldn’t put much faith in “how honest you are with your emotions” and other new age psychobabble. Though I imagine it could work for some.


“True Grit” is what it takes.

     True grit

     true: 'trü: steadfast, loyal

     grit: 'grit:  firmness of mind or spirit : unyielding in the face of hardship


Important also is to remember the people who HAVE TRIED whether it be for one day or a decade or more and then choose not to try.


Caregiving is unpredictable. The variables both internal and external that effect that daily decision of choice are constantly changing.


Thyroid Hormone May Treat Multiple Sclerosis

By Jennifer Warner, WebMD Medical News  Reviewed By Brunilda Nazario, MD

Wednesday, November 10, 2004

... Supplementing the body's own thyroid hormone during a critical phase of multiple sclerosis may help repair the damage caused by the disease, according to new research …

(click on blue headline above for full story)


Patti does not have the type of MS, 'relapse remitting' tested in this study and she is past the 'critical phase'


What is however interesting is that Patti prior to MS was diagnosed with Graves' Disease. She had her thyroid gland surgically removed and has lived on synthroid (synthetic thyroid hormone) ever since.


Years ago, Patti ‘discovered’ that tinkering with synthroid (at great risk to herself and unknown to me) to deal with MS that she could feel ‘better’. Patti’s own ‘Dr. Jekyll” self experiment fortunately ended without catastrophic results but MS can drive people to desperation. It also began a new age of home caregiving when doctors written orders prohibited Patti from access to administer her own medications.


There are so many mysteries involved in MS. Now the role of the thyroid hormone certainly strikes home with us.

Monday, November 15, 2004

Family Caregivers Month

         National Family Caregivers Month, 2004

        By the President Of The United States of America


A Proclamation


Every day, family caregivers across our Nation are caring for loved ones who are aging, chronically ill, or disabled. Through their selfless actions, they bring comfort to those in need, enrich their own lives, and reflect the true spirit of America.


America is a country of hope and promise that honors the dignity of all its citizens. Our family caregivers sometimes sacrifice their own emotional and physical needs to dedicate their time and energy to serving their loved ones. By taking on this enormous responsibility, they are helping honor life in all its seasons.


My Administration remains committed to supporting the important contributions of family caregivers. My fiscal year 2005 budget includes tax relief for Americans who need long-term care and individuals who care for these family members in their homes. We will also continue to work with employers, faith-based and community organizations, universities, and national aging organizations to bring critical services such as individual counseling, educational activities, respite care, and family leave policies to more Americans.


By bringing loving support to their loved ones, our Nation's family caregivers make our country a better place. During National Family Caregivers Month, we honor their generosity and dedication, and we recognize the vital role of family in the lives of our citizens.


NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, byvirtue of the authority vested in me by the Constitution and laws of the, do hereby proclaim November 2004 as National Family Caregivers Month. I encourage all Americans to honor and support the family members, friends, and neighbors who provide care to their loved ones in need.


IN WITNESS WHEREOF, I have hereunto set my hand this fourth day of November, in the year of our Lord two thousand four, and of the Independence of the United States of Anerica the two hundred and twenty-ninth.




Sunday, November 14, 2004

good fatigue

Sunday was a family filled day for Patti and her favorite outing a trip to the movies.


Some days living with MS can be a fairly normal day. To be sure they begin and end at a 24/7 care facility for Patti and she is wheel chair confined however without additional surprises, flare ups of symptoms, or accidents the time together can be enjoyable for all.


MS unpredictability may be its most frustrating aspect from the caregiver perspective. It’s blind luck or maybe fate as to how your time is going to go. Sure you can ‘prepare’ and improve your odds but never quite control them. Nor can you give up trying.


I picked Patti up after lunch and we headed for an afternoon matinee of “Polar Express” along with our daughter and Patti’s parents. Afterwards it was hot chocolates, ‘egg nog’ latte, and sweets at Starbucks along with conversation and family time.


Returning Patti to 24/7 care for dinner she bumped into her brother and his family who had stopped by to visit with Patti. It was a pleasant surprise ending to her day.


Before I left, Patti wanted me to make sure to remind staff that she was really looking forward to going to bed IMMEDIATELY AFTER dinner <grin>.


Fatigue is fatigue and just an MS symptom you could observe. Yet some days ‘how’ Patti gets fatigued can be as good as medicine.

Thursday, November 11, 2004


Visiting with Patti Wednesday evening it was refreshing to hear her recount her shopping trip to Wal-Mart on Tuesday with several other residents from her care facility.


First of all anything ‘remembered’ is always impressive. When that memory includes details and feelings it’s particularly heartening.


Her facility maintains custodial cash accounts for residents in the business office. When able to arrange such outings, staff members or volunteers assist residents with shopping and transactions.


The facility vehicle has a lift. Wheelchairs simply roll in, are secured, and roll out. Transportation is effortless as NO transfers are involved unlike a passenger car. Transfers are stressful and it takes FOUR to go shopping via the family passenger car.


A ‘shopping assistant’ working for you IS different from a family member or friend who will always risk crossing the boundary of ‘patronizing’ behavior or attitude.


Shopping with family or friends, Patti is the ‘different’ one. Shopping with other residents like her, the able-bodied assistants are the ‘different’ ones.


She felt like she did something ‘on her own’, without needing to depend on her family, for the first time in years.


These are little points, but interestingly when added together they created a good time that Patti could also ‘remember’ and share. It was an opportunity of empowerment that seemed quite healthy and most important FUN for her.

MS & Memory

Patti has been taking Aricept (donepezil) for almost two years


Alzheimer's Drug Helps MS Patients

Memory improves for some patients, study finds

By Janice Billingsley, HealthDay Reporter  

     MONDAY, Nov. 8 (HealthDayNews) -- Memory problems that prevent multiple sclerosis sufferers from doing their jobs are extremely troublesome and disheartening, say doctors, but a drug geared for Alzheimer's patients may offer some help.

     Doctors at Stony Brook University Hospital in New York:State found patients who took donepezil for six months improved their scores on memory tests by 14 percent, compared to those who took a placebo. Further, 66 percent of the patients on donepezil felt their memory had improved, double the number who reported improvement while taking a placebo. …

     The results appear in the Nov. 9 issue of Neurology. …

     "Even though donepezil was designed for Alzheimer's, its efficacy does not have to be limited to that disease. It is used in vascular dementia," he said.

     "But," he added, "people with MS have been bothered for a long time by memory loss -- it is one of the very troubling symptoms of MS -- and this is the first demonstration that we can help with this symptom."…


At first glance this would seem most encouraging for those with either mild or early MS or mild cognitive difficulties.


In Patti’s case her cognitive problems and progression were already severe. However after one year at maximum dosage, in her specific case, there was MRI evidence of slower progression in associated brain tissue deterioration.

Wednesday, November 10, 2004

Need a flu shot ... believe it or not ...

NEED a flu shot?  Believe it or not …




Flu Shot and Yoga are Part of Wellness Packages for November

Throughout the month of November, guests can combine a Jamaican all-inclusive luxury vacation … as well as the flu shot that’s become scarce in the U.S …. There is no shortage of vaccinations in Jamaica. … "The Travel Prescription to Good Health" packages starts at $294 per person, per night, based on double-occupancy; land only

Dining & driving, Part II

Living with MS in the family is above all unpredictable. While dining has been the big issue this week it is not always a PROBLEM. Yes Patti must be monitored and assisted. That’s old news. Her 24/7 care facility just had a rough week of experiencing it and had to make operational changes that always were part of homecare.


If ‘prepared’ and you adapt the dining or eating experience then more often than not it can be a pleasant time. Below are two emails reporting ‘good times’ during the same period:


(from Patti’s Mom)

     Hi, Just wanted to let you know that we had a lovely evening with Patti ...

     We picked Patti up at 4:00 PM, we took a leisurely ride to see some lovely Fall leaves and then we went to Eat N’ Park Restaurant for dinner. Patti chewed very slowly, mainly because I kept reminding her. She had an easy meal of linguine w/white sauce and broccoli. Cheese cake for dessert.  I also cleaned out her closet … I hung ALL the pants on one side of the closet and her long sleeved tops on the other so she certainly has enough outfits.... We had her back just in time to go to the movie at 6:30 PM


(from Sharon, Patti’s life long friend and unofficial sister)

     I have Veterans Day off on Thursday and I'd like to visit Patti and take her lunch….I'll call the nurses station to let them know I'm coming.

     I went to see Patti on Saturday evening and she was in bed, asleep at 7:10.  I went out to the desk and told them I brought Patti one of our favorite "Chocolate Utopia Sundaes" from Dairy Queen….they said she had asked to go to bed, only ten minutes before, so we went back again and she was awake.  Apparently, she didn't have a nap in the afternoon. Well she woke up long enough to inhale the sundae, then back to sleep.


Living with MS takes adaptation on the part of family and friends. That is not the same as accessibility. Adaptability is a state ofmind.

Dining and driving, Part I

Dining has been a hot topic issue over the last week.

From Director of Nursing, “…Patti is now seated in the assist dining room rather than the main.  I'm told that this move was made because she requires frequent cues to slow down, and because she often vomits at the table when she eats too quickly and that the other residents dining with her in the main room were distressed by this….

…In the assist dining room; since residents there are deemed at greater risk for choking and require much more assistance with their meal consumption, we are staffed with at least 2 nurses and roughly 5 or 6 nurse aides and others specifically trained to feed. (versus 1 licensed staff person, 1 nurses aide, and kitchen staff who also serve meals in main dinning room.)…”

… Patti was evaluated by the speech therapist here, and regardless of the etiology of her coughing/choking/vomiting episodes, there was evidently no program they could suggest from which she could benefit to alleviate those episodes.  Given that she requires more help and more direct supervision, it is felt that we can best protect her and meet her needs by placing her in the dining room where there is a far greater number of staff to take care of her. …"

Patti absolutely MUST be monitored and assisted when eating, I agree 100% with the change and was unaware the main dining room offered such minimum assistance. 

Whenever I dropped in to observe obviously I was 'there' and assisted her in eating so I was masking any problems. This is an excellent example of how it can take quite awhile before the transiton from home care to 24/7 care can get on the same page.

Tuesday, November 09, 2004

HOPE never goes into remission

Can MS be cured?


15 years ago today, HOPE punched an 'impossible' hole into a wall in Berlin and changed the world.


HOPE never goes into remission.

Monday, November 08, 2004

A Sunday of different moods

We had hoped for a family afternoon Sunday outside with a magnificent 70 degree sunny day. Patti, however, was in a dark mood and things just didn’t work out that way.


When we arrived, though Patti was oblivious, it was apparent she had a bowel accident. The nearly 40 minutes it took to single handedly get a non-ambulatory person undressed, showered, and redressed was physically challenging enough without the constant stream of verbal abuse. In recent years these outbursts of abusive behavior have increased. I’m told it’s linked to MS related, dementia-like damage to emotional control aspects of frontal lobe. However, when I’m the recipient medical 'reasons' don't make it easier to put up with.


To me, yes people can get upset and angry but no they cannot get upset and angry with the people who are trying to help them. If you start trying to rationalize reasons why someone is behaving that way besides that they are wrong you risk crossing the line into what psychobabble calls codependency.


As a parent I’ve always had an easy cut off point as soon as Patti begins to verbally begin to rage against Megan. After verbal assault against Megan while she tried to help her Mother with her shirt it was time to leave Patti alone with her own dark mood. Fortunately in a 24/7 care facility you can walk away when pushed to your limit, in homecare your only option was to leave Patti unattened and at risk.


While Patti’s MS related memory problems will erase the incident that is NOT the case for the rest of us. And I haven’t a clue how it all effects intangibles like mother daughter bonding. Yet it's nothing new and I'm sure it won't be the last. It's living with MS in our family. It's choice, it's chance.

Sunday, November 07, 2004

November afternoon

Colors in the wind, totem of sugar plum dreams, hunting season ... a November day passes.


Saturday, November 06, 2004

Weekly Injections Slow MS Onset

Nearly 20 years ago Patti didn't have the options of medicines to slow the onset of MS. Today, if you have a responsive type MS and you have the finanical resources, it would seem worth the fight.

                    Picture from Hometown



Health officials say people with a chronic disease should get a flu shot. Does this mean you? Get the facts on flu.

Related Story: Dodge the Flu Without a Shot


Health News Headlines

Weekly Injections Slow MS Onset

Are you or someone you love showing early signs of MS? Now's the time to act. And researchers say they've found something that keeps full-blown MS at bay


Editor's Picks

Stories Shared, Lessons Learned

"After the diagnosis, things seemed to ... make sense as to why I was feeling pretty much lousy all of the time."

Does this sound familiar? Read more about this woman's road to diagnosis.

Friday, November 05, 2004

Two out of three ain't bad!

Ahh! The kind of extended forecast you can fall asleep dreaming about … Let it snow, let it snow, let it snow!

http://wwwa.accuweather.com/adcbin/public/local_index_day.asp?zipcode=17050&metric=0&partner=rs_pennlive&day=15  Thursday 11/18 ... Snow and rain in the morning

http://wwwa.accuweather.com/adcbin/public/local_index_day.asp?zipcode=17050&metric=0&partner=rs_pennlive&day=15 Thursday 11/18 ...  Snow, rain mixed in early       

Living with MS at Patti’s level of progression in our family can have such dramatic swings. Sunday and Tuesday Patti was so up you almost wanted to believe she was ‘better’. Thursday night’s visit was as frustratingly opposite.


Visiting Patti we found her disoriented, confused and ‘looking’ for someone to talk with. (Even though she was sitting in a lounge full of other residents.) She blurted out that she was sick and had been throwing up. Visually she seemed OK and the good ol' fashioned hand on the forehead revealed her temp was OK.


Once we got talking she perked up and wanted to watch a movie on TV. We all settled in for “Bruce Almighty” on cable.


I did notice one of her shoes and one leg support on her wheel chair did seem to support her claim of vomiting. Her clothing however was fine. While Meganand Patti enjoyed the movie I cleaned up her shoe and leg support. Checking her closet I found another pair of shoes also soiled from apparent stomach distress. I took my curiosity to the nurses’ station. We checked the log which confirmed only one incident of emesis immediately following lunch, over 6 hrs earlier.


24/7 care has unquestionable advantages in terms of safety and simply 24 hr attended care. It has a weakness of course in individual attention to detail such as noticing soiled shoes and how that might match up to a medical puzzle.


MS complicates anything in that Patti notices nothing and her memory is inconsistent. Patti’s inability to consistently report her medical needs in relation to real time or direct her own medical care makes it impossible to “know” if what she is telling you is how she ‘feels now’ or ‘felt 6 hrs ago’. In a busy professional environment response is a balance of priority and pattern.


Random family visits are wildcards. You can make yourself crazy worrying if Patti is not getting attention when you know she is. You have to maximize the family time and sometimes family time is cleaning up soiled shoes sooner than later. In all honesty, much of the emotion is frustration with MS that Patti could not be as ‘better’ as she was our last couple times.


By the time we left after some family time, visiting, and laughing while sharing the comedy on TV Patti was significantly improved. And leaving clean shoes and having bugged the nurses, I guess I felt better.


All in all, two good days with lots of laughs and one down evening are not bad for living with MS in our family. Two out of three ain’t bad!  

Thursday, November 04, 2004

The Locks Don't Lie

Searching for "caregiving", the following is unquestionably the most unique perspective I have read to date. Click on the blue highlighted title for the full article.
                                            The Locks Don’t Lie
By Lana Wolfe

… As a hairstylist to several women and a few men who have entered the life changing role of caregiver ...

... What I’ve seen in my chair at the salon has woke me to a problem that has increased these past few years—that of the caregiver.  Who cares for the caregivers of this world? …

Wednesday, November 03, 2004

Voting & MS

Living with MS can make the usual sometimes unusual and other times interesting to say the least. Voting and MS progression unquestionably falls into the unusual and interesting category.


‘Officials’ try to encourage disabled citizens to vote by mail-in or absentee ballots. That has always rubbed Patti wrong over the years and frankly it is easier said than done from a caregiver’s perspective.


Yesterday began with a surprise when I went to pick Patti up to vote. I discovered her care facility was a designated polling location. However, since we had not changed her address, it was not her polling location.


Traffic jam, parking problems, even lines out the door were so bizarre for a facility that traditionally would be eager to have visitors. Finally getting in, I “heard” Patti sharing her morning bingo win of a stuffed elephant with all these new visitors and captive audience in the hall. I could only chuckle as I watched her working the line sharing and asking if these new visitors didn’t think her elephant was soooo cute. I also noticed poll workers ‘glaring’ at Patti. Of course, she could not see them nor were they aware she could not see that far. Obviously a stuffed elephant was too close to political material for their comfort.


Convincing her that unless we also had a stuffed donkey we should leave the elephant in her room, we departed to vote.


Patti’s visual impairment is one MS symptom that affects voting. She is “legally blind” and needs assistance. That is one issue and usually can easily be resolved.


Another and newer issue is understanding the who and what of voting. Mental confusion and cognitive problems increasingly are a challenge, though only significantly for last couple of elections including off year Congressional voting.


What I do is review the candidates and any ballot questions the week or two before the election looking for consistency in her answers. I repeat the process including witnesses just to confirm for my own sake that I am not unintentionally manipulating the process of explanation or questions. If we used a mail-in, I would just fill it out for her. So by actually voting live, I think it is fairer.


When we lived in Maryland we used to joke it was “torture the disabled”. Poor Patti had to be accompanied into a voting booth by three poll workers representing the Democratic Party, Republican Party, and an Independent because she was visually disabled. First of all they were the pull down lever machines behind a curtain and three standing people plus a person in a wheelchair is VERY crowded. They each had to explain a prewritten statement for each lever category. It was voting hell! That was bad enough for each candidate but when they got to referendum issues and ballot initiatives it was ‘torture the disabled.’


Even worse was that they could not touch a lever for her. Patti had to pull the lever. Unbelievably three little old ladies would try to support Patti in a standing position. It was unbelievable.


I was not allowed to assist as I might try to "influence" her vote. Even though each time we were reminded that Patti could vote with a write in ballot and I could help her prepare it at home. Go figure! Wouldn’t I be better able to manipulate at home alone? All I wanted to do was help physically support her while the little old ladies explained! <grin>


My favorite anecdote was the second Clinton election. It was not a good physical day for MS and while Patti was behind the curtain being tortured by the little old ladies trying to physically support her she began to fall and grabbed the voting machine for support. Voting machines are not very stable and it in turn began to fall.


I’m watching this develop like a single domino in a line start to go. The little old ladies, about to be crushed, push the falling voting machine in the opposite direction. Patti looses her grip and falls into her wheel chair. Without Patti’s resistance the voting machine now begins to tip over in the other direction. The little old ladies race to the back of the machine to keep it from falling. They startle the person behind the curtain in the machine to the right who shrieks. The machine they are trying to stabilize comes to a loud clunk as it settles.


In the meantime, back in Patti’s wheelchair she had not set her brakes. When Patti falls into her chair she shoots out in the opposite direction slamming into yet another voting machine on the left. The impact knocks the machine a couple feet knocking down its yelling occupant and setting all kind of machinery inside spinning and whirring.


I cannot tell if I am a Three Stooges movie or if this is really happening. I can tell Patti is absolutely unharmed and I am laughing so hard my eyes are watering, and my sides hurt.


One or another poll worker begins to exclaim, “Oh my God!” (In addition to the voters startled and knocked down attempting to vote in adjacent machines.) From what I can overhear poll workers believe the two machines have suffered ‘tumbler damage’ and possibly hours of voting has been contaminated.


I nearly dissolve into hysteria as Patti rolls up to huddled poll workers and exclaims, "Excuse me, I don't believe I finished voting." <GRIN>


Ahhh! There is nothing as beautiful as democracy in action! Of course, that was Maryland and poll workers were psychotic.


Here in Pennsylvania ‘reason prevails’. We arrive at our local fire station and they ask Patti simply, "Would you like one of us to help you fill out the form?" "Or would you like someone of your own choosing to help you to fill out the form?"


In our district we have good old paper ballots similar to standardized tests, fill in the circle with a #2 pencil. If you want to write in a name, you simply write in a name. 


It took us about 45 minutes to vote including waiting time in line. Patti enjoyed the outing. After all she alone had a chair in the waiting line. A poll worker came out near the end of our wait and offered to take her to the front of the line because she was disabled. She declined politely, saying, “No thanks, I can wait like everyone else”. After he had walked away, she muttered sarcastically, “Now why didn’t he offer that 30 minutes ago when I was at the back of the long line?”  Her remark broke up everyone within earshot and Patti became a crowd celebrity.


I just kept Patti at home for the day to nap, visit with our daughter after school, play with our cats,and some dinner together.


After 9 hours of caregiving I had forgotten in these last 6 months just how HARD it is. I had forgotten about the Depend changes, clothing and bed linen changes and laundry after a nap, showering and changing Patti, and more laundry, plus the physical demands of transferring multiple times an hour or more. The mental demands of being unable to leave her unattended were all the more difficult.


For a least this family, another election day goes down in the record books. Beginning with a stuffed elephant as an omen, possibly? Ending with an elected President, possibly? The only definite for us is that they are NEVER run of the mill. 

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