Saturday, June 26, 2004

Luck of the Draw

Visiting comes down to the luck of the draw as far as whether any personal accidents mar the experience for visitors. Few would return if vomiting or bowel or bladder accidents dominated every drop in


While visiting may not be remembered by Patti, every visit is greeted with welcome surprise. I believe guests are good for her.


MS related napping to combat fatigue also factors into visiting as I often find Patti in bed. It is physically challenging to get her up and dressed. Or you have to wait until staff has an opportunity to assist. While they are more than glad to accommodate visiting needs they of course have to balance the needs of several patient/residents and their response time can vary.


Patti requires assistance to get out of bed and dressed. She can do neither unattended.


Fortunately for Patti, I have drawn the unlucky times recently and her other visitors have had relatively problem free time with her. Facilitating return visits is a good thing.


Visiting takes patience and effort. It’s not like dropping in on a neighbor. However, it is appreciated infinitely. 

Thursday, June 24, 2004


A caregiving robot or a “carebot” is what a spouse caregiver truly needs to be. Even in the care facility era it seems you still need to be always able to grind through any situation and detach human emotions. Today was a good example


It was a beautiful day and I found myself with some open time. It seemed fair to pick Patti up and bring her home for a cook out and dinner on the patio.


I arrived to find Patti napping and her room reeking of sh*t. Asking Patti if she had just had a bowel accident she responded by claiming, “No, she had just been changed”. Sometimes I think her mental confusion and memory loss is a blessing when it comes to bowel accidents.


Regardless it took almost 30 minutes to get her showered, and dressed, bed room and bath room floors cleaned up, bed linen stripped, and clothes bagged. This was a near daily routine at home. Pure ‘carebot’ mode is the only way to get through it. Strength is critical as Patti under stress is useless and when dealing with slippery floors lifting is involved.


The extra time quickly collapsed the available timetable rippling into evening plans for our daughter and we were right back to where we were before the care facility era with everything and anything having to pivot around MS. Of course Patti is oblivious to anything else so she enjoyed the cook out and dinner!


So much for nice ideas!


All I know is the first time I have a bowel movement all over myself I’d like to believe I would be on a plane to the Netherlands where it appears Euthanasia is legal. NO ONE will ever clean me up on a daily basis year in and year out.

Wednesday, June 23, 2004

Care Review

Back again in the afternoon, it was time for Patti’s “Care Review”. You get to meet with a team of staff representing different areas from nutrition to activities to nursing.


Actually these sit downs are interesting however to accommodate all residents’ families and still run the facility they only allot 15 minutes every couple of months. You can arrange follow up appointments for specific issues


Interesting today was their nutritionist’s concern that Patti was not finishing her meals. They were going to start her on vitamins to balance her diet. It was particularly interesting because at the picnic the night before I was stunned to notice Patti’s strawberry shortcake and fruit cup sitting untouched on her tray. When I asked Patti about it, she was unaware she had any. Because of their layout on the tray and her visual impairment she could not see them. Once placed in front of her she inhaled dessert and fruit cup.


Patti is ‘legally blind’! Like many people with MS and visual impairment she often guesses or fakes too well that she can see. I raised this concern and they found no notation in their records for the dinning room staff that Patti could not see. So it’s highly probable Patti was not finishing her meals because she did not see all of her meal.


I’m glad they have these sit downs because sometimes it is the little things that can make a big difference. And of course, caregivers and visitors need to visit and participate in all aspects of a care facility. You sometimes become the eyes and ears of your family member or friend.


However, in spite of not finishing her meals, Patti had gained 9 pounds in 3 months since admittance. According to their records, she NEVER misses the snack cart when that comes around. <grin>  


Vision basically occupied our time. I also covered the phenomena that Patti sees light color on a dark background better than dark on a light background. Perhaps a darker tray with light plates might help.


Her visual impairments had not previously been properly flagged so for that alone the ‘Care Review’ was most beneficial. Especially since the communication could cover so many different departments at once.

Doctor's Appointment

Finally we were able to match Patti with preferred physician this morning with myself in attendance!! That seems like such a simple request; however you have no idea how complicated that has been. Among the reasons for the preference is that her doctor is a woman. I hate to be sexist yet I have found that it DOES MATTER.


I would encourage all well spouses to begin to include themselves in the MS spouses’ medical appointments sooner than later. Obviously there are benefits to sharing information but also the onset of mental confusion or memory loss can be subtle. As the caregiver spouse you frankly are better able to notice changes. Make notes before an appointment to maximize your time with physicians and neurologists.


Patti’s problems with memory and mental confusion are of course extremely progressed. For example, when asked by doctor if she has any problems with swallowing she responded “no”. In reality Patti’s food is cut into little pieces and she has to be monitored while eating. Only a couple years ago she nearly choked to death at lunch at her parent’s home. Unless some one was there to offer the real story, changing medical professionals could take Patti at her word. In an institutional setting personnel are changing all the time.


Mainly I wanted to address increasing spasticity. Patti of course never brought it up, nor mentioned it when asked. I directed doctor to nursing notes which reflect spasticity so significant while sleeping that Patti had developed an abrasion on her knee from rubbing against the wall. Spasticity was one MS symptom Patti somehow NEVER developed before.


Nursing staff doesn’t hound a doctor to READ their notes. Frankly had I not been there, this appointment could have been like too many others with Patti responding to doctor’s question claiming she’s “fine” and on they would have moved to the next patient.


Seeing how little Patti could recall of her medical history and how inaccurate her memory was, I have no doubt her doctor will at least call me regarding appointments.


As for spasticity Patti will begin trying a muscle relaxant, Zanaflex at bedtime. Additionally combined with her other meds it may also increase sleepiness improving her overnight rest.


This will at least give her a working test before her appointment with her Neurologist next month where we can better address the increasing concerns of symptoms of spasticity and ataxia related spontaneous vomiting.

Tuesday, June 22, 2004

Resident / Family Picnic

Patti's care facility had their first Resident & Family Picnic today. Weather decided to not cooperate and everything had to move inside. However the parking lot was JAMMED when we arrived and residents and families were set up for picnic dinning in every available space

It really was nicely produced with plenty of volunteers to help with food and well promoted. I have never seen the facility so packed with visitors.


Advocacy moves to the forefront of caregiver skills with the care facility era. This was not ‘in the cards’ nor anticipated


Everything is centralized in the caregiver when at home. While this is certainly suffocating for the caregiver it is also extremely efficient for the spouse with MS.


The caregiver is a walking talking database of medical history. With time the caregiver’s diagnostic abilities can rival any Neurologist’s


With the care facility era, the introduction of a “team” or shifts complicates and confuses day to day management of MS symptoms.


For example I just discovered that one of the fundamental sources of so much communication frustration has been that Patti was being seen by the wrong doctor!!! She’s been there for three months and that was just caught


Patti’s medical records, my notes, questions, and observations have been sitting idle and unread in a file to the attention of a doctor that has never seen Patti!! I could scream!!!!!!!!!!!!


No wonder I find myself banging my head against the wall so often monitoring and trying to manage Patti’s treatment.


She was misevaluated by physical therapist day after admittance, which took me over several weeks to catch and correct.


And now I learn the wrong physician examined her day after admittance.


Institutional thinking and mindset can be so sluggish and more focused on putting information in a file than actually reading it.


From caregiver you need to morph into patient advocate. Different focus, different sense of urgency, and new and different skills. From the isolation and suffocation of home caregiving you now need to succeed in the political and institutional world of a medical facility. 

Monday, June 21, 2004

Visiting Hours

     A Care Facility is an interesting environment. Until Patti’s admission I NEVER gave a second thought outside of noticing buildings while driving by


     I’ve learned the real story is told in the visitor parking lots.


     Is the care facility an extension to home caregiving or simply a place to put people? Those are the extremes and I’m sure most families fall somewhere in between. 


     The visitor parking lots tell the story of how and when the outside world interacts with those who live in a care facility. And in turn perhaps serves as a mirror for when our culture perceives it has appropriate time for those who can no longer take care of themselves. 


     It’s a lonely place on a Friday evening.

Saturday, June 19, 2004

Messy shopping trip

Not actually dealing with daily hands on caregiving can make one forget how constantly suffocating home caregiving is. It is that 24/7 suffocation that most affects the caregiver. It is relentless!


With Patti in a care facility, I find myself reflecting on some aspect as if it was in the abstract. That is a wrong image to project because it ignores the feelings of suffocation that surround you and what you can even try to do


A perfect example was a simple family shopping trip Friday evening. We stopped by to see if Patti wanted to get out and go shopping with us for some odds and ends, Father’s Day, etc followed by a stop at Dairy Queen. We found her preparing for a game of bingo but she chose the shopping alternative.


Her transfers were difficult and her ability to understand verbal cues was almost non-existent. I haven’t seen her so confused in such a long time


This and more deteriorated into BOTH bladder and bowel accidents leaving store. – The worse possible location because you have no way to clean her up and have no choice but to engage in a messy transfer to car and back to care facility for a shower and change of clothes.


Needless to say the Dairy Queen visit was abandoned 


The ‘simplest things’ become so complicated and at risk OR you just stop including Patti in them. Caregiving for a spouse living with MS suffocates every breath you try to take. 

Friday, June 18, 2004

Jubilee Day

Living with MS unquestionably restricts what you do as a family. Oh sure there are ADA guidelines enabling access, however accessibility often is not the ONLY concern. Everything and anything has to be viewed and reviewed from a caregiver’s eyes.

The town we live outside of, Mechanicsburg, swells in population from 9,000 residents to 60,000 visitors to celebrate Jubilee Day with a street fair that city organizers claim to the be the “largest one day street fair east of the Mississippi.” A few city blocks become a packed sea of humanity and vendors. Basically the capacity of a stadium packed into a couple city blocks.

Like any all day outdoor event held in June in the Mid Atlantic region, heat, humidity, and thunderstorms tend to dominate the day. These same three factors are nightmares for living with MS. Heat and humidity can reduce Patti to mush within minutes and thunderstorms are not easily dodged in a wheelchair.

Until I finally attended yesterday (without Patti) I also never quite grasped the magnitude of crowd size. A person in a wheelchair most likely could see nothing simply due to crowd height and how packed in everyone was. Over a 4 hour period I saw not one wheel chair and only two brave souls in scooters on the perimeter of the crowds

While I certainly enjoyed myself, I was so glad I had always let common sense prevent me trying to take Patti in the past. It would have been “MS Hell”! Even though it has been three months since Patti entered her care facility, I still can’t avoid looking at the environment around me with caregiver’s eyes.  Or maybe it's just always a bit of wondering, what if ...

Tuesday, June 15, 2004

Movie & Dinner

     With a break in my schedule, we seized the opportunity and Megan and I took Patti out for a movie and dinner.
     Movies are one of Patti's few expressed pleasures and seated close to the screen she can "see".
     We checked out Stepford Wives. AOL Movies: Stepford Wives, The

     Patti found it hysterical in parts. I even had to calm her down at one point so that others could hear the movie, as she was laughing so loud and hard.     

     I should point out that Patti is unable to completely control the level and appropriateness of emotional reactions due to MS related damage to frontal lobe functions of her brain. She might laugh at a funeral or cry at good news. She also might roll on the floor laughing at what others might only chuckle at or vice versa.

     Personally I felt it was an interestingly weird dark comedy with some extremely funny scenes. However, take Patti with you and it becomes a true gut busting comedy!
     While we in the "well" world are quick to identify appropriate reactions, Patti had a blast and that's what the evening was all about!

Monday, June 14, 2004

Nursing Home Care of Individuals with Multiple Sclerosis

Nursing Home Care of Individuals with Multiple Sclerosis
Guidelines & Recommendations for Quality Care

(A LONG but interesting read.)

Mothers May Be Origin of Children's Multiple Sclerosis Risk

Mothers May Be Origin of Children's Multiple Sclerosis Risk

May 28, 2004 -- A person's risk of multiple sclerosis seems to come from their mother, new data shows.

Multiple sclerosis is 20 to 50 times more common in people whose parents have the complex and poorly understood disease. But it's not a simple matter of a single gene being passed on from generation to generation. Researchers don't know whether multiple sclerosis comes from a person's genes, from a person's early environment, or from a complex interplay between the two.

Now it looks as though an important cause of multiple sclerosis may be linked to mothers. The information comes from a clever study led by George C. Ebers, MD, director of the department of clinical neurology at England's Oxford University. They compared multiple sclerosis frequency in the full-sisters and full-brothers to that of the half sisters and half brothers of people with multiple sclerosis. This study's design could help determine which parent, if either, is having an affect on multiple sclerosis risk.

They found that having a full-sister or full-brother with multiple sclerosis increased a person's risk of multiple sclerosis by 3%. Sharing only a mother with someone with multiple sclerosis increased a person's risk by a similar amount: 2%. But sharing only a father increased risk only by 1%.

"The difference in risk suggests a maternal parent-of-origin effect in multiple sclerosis susceptibility," Ebers and colleagues write in the May 29 issue of The Lancet.

Women get multiple sclerosis twice as often as men. Whether this is related to the Ebers team's current findings is not clear.

The researchers note that there are several possible explanations for the link to mothers. One is that mitochondrial genes -- genes contained in the power-generating structure in cells, which mothers pass on directly to children -- play a role in multiple sclerosis. Another theory is that multiple sclerosis is caused by imprinted genes (genes that are active only when passed on by a particular parent). Or the condition might not be genetic at all: Events that happen in the womb or during birth may play a major role.

An editorial accompanying the study comes from Mara Giordano and Patricia Momigliano-Richiardi of Eastern Piedmont University, Novara, Italy.

"Despite the new data, the nature-nurture dilemma remains," they write. "The findings of Ebers and colleagues do, however, give us some clues about directions for future research."

Caregiving & working

Each caregiver is going to bring something different to their situation. This in turn only further increasing the unique variables of each family's challenges in living with MS.
I think what the caregiver does for a living has to have an impact on the overall picture. The ONLY release or 'break' is going to be when away from home and working.
With progression your ability to work will decline from full time to part time and less. Even trying to 'work at home' is a myth. 24/7 caregiving is a FULL TIME job.
Your spouse may or may not be fortunate to be entitled to any disability income. You may have children to support. Your family financial situation may or may not be stable when MS first enters the picture. All of these and more will make each family's financial demands different. The caregiver MUST somehow win this juggling act.
As a deejay entertainer I was able to work a normal June schedule for the first time in 18 years this past week with Patti safely taken care at her care facility.
How did I juggled this through the years? It was and is also particularly difficult to watch the "well" world whirl by playing and laughing. Coming home to clean up bowel and bladder accidents was real reality shock and had to have been so desperate for Patti. Fortunately, those days are past.

Saturday, June 12, 2004

from Patti's folks...

(from {Patti's folks...)
We were over to visit Patti last evening and her eyes really lit up when she saw us, she exclaimed "I was not expecting you" so it is really nice to see her happy face when she sees us. Friday we promised Patti we would take her out to dinner.

Thursday, June 10, 2004

It's peculiar ...

It's peculiar to say the least that I feel anxiety over trying to visit with Patti during one of the busiest professional weeks of the year and end of the school year week activities for Megan. A year ago I could have strangled her trying to juggle cleaning up her bowel and bladder accidents or falls with trying to rush off to work or run her to one patchwork caregiving scenario or another.

She is safe and secure (and more often than not oblivious to seasonal and family activities); you would think I would find a comfort level in that. And it's only been since Sunday when Megan and I last visited, so I can't explain the high anxiety. Yet it is there. I think also attending a recent volunteer awards ceremony has unquestionably left me feeling inadequate contrasted to what others accomplish with their lives.

As a release I experimented with a thrill seeking ride that exceeded any roller coaster I have ever experienced. Last night we ventured for the first time into "limited traffic" with Megan's learner's driving permit. It is moment in time I will never forget. She was excellent. Though I would have given anything for an extra brake pedal on my side of the car. <grin>

Monday, June 07, 2004

A good person

I confess to often using the medical profession as a whipping boy with few exceptions. ONE of those exceptions I reference is our friend Renee.

NBCTV Washington,DC has chosen to recognize her work and leadership in the community 

Of course, it leaves out the MOST IMPORTANT contribution of them all to me. It was Renee who came up with the idea of using LoEstrin to control Patti's menstrual bleed cycle. Reducing the nightmare family ordeal from one week a month to only 4 times a year.

As a caregiver (and a guy) that alone revolutionized home caregiving when Patti's mental confusion and lack of eye and hand coordination prevented her from helping herself. Sanitation, laundry, and quality of life issues aside there was also our daughter coming of age in the middle of all this. It was a helluva way to learn to deal with her own menstrual cycle. Renee's solution was a family godsend.

No caregiver can stand alone. Your friends can be MORE than a source of strength.

Sunday, June 06, 2004

Sunday visit

Megan and I visited with Patti today and took her out to Dairy Queen for a "Chocolate Utopia" before her dinner at the care facility. Sometimes you just have to eat dessert first in life. (Especially the way our schedule is this week.)
There are times that the mental confusion of MS progression can create a humorous situation unique to itself. After greeting Patti today, she turned to Megan and me and in absolute seriousness and concern remarked, "I hear Ronald Reagan's name all over the TV today. Did he die AGAIN?" My daughter and I looked at each other and burst out laughing uncontrollably.
"The Great Communicator" free of 10 years of Alzheimer's himself, would probably understand and enjoy that quip more than anyone would.

Saturday, June 05, 2004

Nancy Reagan

While the world pauses to mourn the passing of Ronald Reagan, I'd just like to offer my sympathy and express my pride in a woman who took caregiving to another level.

Nancy Reagan was a lioness in protecting her increasingly disabled spouse. She would charge anyone in the pursuit of hope. It seems to me even President Bush blinked and backed down over stem cell research.

What a time of mixed feelings and emotions this must be for her.

Tunnel vision

   Caregivers usually have to work, and that was a major factor in the decision to enter the long tern care facility era.
   As a mobile deejay entertainer, June is one of the busiest months of the year. For the first time in memory I find myself able to loose myself in the pressures of travel and work.
   I forgot what the 'real' world is like! Caregiving can give you a serious case of tunnel vision.

Thursday, June 03, 2004

Increasing spasticity

Raging and media aside, "living with MS" does still require daily and practical adaptations. 

Increasing spasticity has apparently caused Patti to rub her knee against the wall while sleeping. This in turn created a minor abrasion.

Her bed had been moved parallel to the wall to create space for her to move around in her room while in her wheel chair. Her oversized TV, while necessary for her visual impairment, is a genuine space hog.

One of my points of contention with institutional thinking has been lack of frugality and creativity in problem solving. Hey, it's not their money so why care! 

In homecare, frugality and creativity are fundamental.

I was pleasantly surprised to discover that the staff came up with a creative solution. An exercise mat now hangs on the wall next to her bed. Hopefully the softer surface can prevent the friction. At least it is a cost free attempt, and to me signals that the staff is starting to think "living with MS".

Undoubtedly anti-spasticity medication will soon have to be added to Patti's growing daily med count, but for now ...

Raging against the machine

Raging against the machine I suspect is part of every caregiver's therapy from time to time.

There is a dark side to MS. There is horror and so much frustration in living with MS. People do suffer. People do die. Lives and families are destroyed. This is REALITY.

The ABC+R drugs offer an extended license on life for some with MS. This is their HOPE and desired REALITY.

Yet the media machine spawned by the drug manufacturers fills magazines with glossy pages of shinny happy people. News stories are generated reporting inspirational personal anecdotes and positive studies. Where is the line between reality and advertising?

The pursuit of hope I fully understand. This sanitized PR image of MS I do not. I worry that the public as a whole learns the wrong lesson about MS for those who suffer.

Wednesday, June 02, 2004


I drove to her care facility to pick Patti up today for a dinner at home. I found her lying in bed with a bowel accident in her Depend disposable underwear. Trying to change and clean her up was more than an ordeal with her increasing leg spasticity only smearing the mess all over clothing and bed linen.
Cleaning up sh*t, somehow I just could not get the recent article regarding quality of life out of my head:
"...Researchers found 77% of people with MS said they were mostly satisfied or delighted with their quality of life..."
For dinner at home I try to do something special and prepared crab cakes, corn on the cob, and tropical fruit salad
Yet driving back less than half an hour after dinner Patti could not even remember what she ate. She barely could transfer in and out of the car, and required another change of Depend disposable underwear. She couldn't even remember where she had been.
Only two days earlier I had driven her back from a Memorial Day family cookout marred by a bowel accident at dinner necessitating a complete shower. Mercifully Patti's memory blocked that episode.
Pondering this littany of symptoms, here again another recent story the Terri Garr interview popped into my head:
"...Tell me about your symptoms right now. The only one I've heard you talk about is your slight limp, which I don't think anyone would notice if they didn't know..."
Are we all talking about the same disease? What is quality of life? What is heartbreak? Sometimes I swear the mainstream media lives in some kind of denial

Tuesday, June 01, 2004

Medical Bills & Insurance

   When Patti was at home I probably spent on average at least half a day to a full day per week dealing with medical bills and insurance.
   So far that area of caregiving has not improved and actually has worsened even outside of Medicaid application. Today was one of those days.

   At the core of the problem is "too many cooks in the kitchen". With homecare it is just you and therefore you are aware of any and all medical costs and insurance claims in advance. You can prevent common errors.
   With the institutional era I'm too often discovering medical expenses only as a result of our insurance either reporting they paid in full, part, or denying payment. Recently as late as two months after the fact.
   It is MADDENING! Slowly piece by piece I am trying to adjust the system to notify me whenever there is a cost incurred. Amazingly this is not as easy as it seems.
   The nature of a long term care facility is basically to take care of a resident without involving the family in daily decisions.

   I imagine part of the problem is me letting go.
   Inside a caregiver's brain is a wealth of instant information and experiences. However an institution grinds on by it's nature always keyed on the paperwork of a "file".
   Most residents admitted have little to no support outside the care facility so the system is designed to be more self contained. And no institution will ever operate with the frugality of a family.

   Maybe the parallel worlds are pulling apart? I don't know. However until Medicaid is approved, surprise medical expenses are more than dangerous, AND doubly time consuming.

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