Memorial Day

   Picked Patti up for a Memorial Day cook out at her parents house with family and friends.
   I noticed when signing Patti out that her brother and family had signed her out on Sunday for a afternoon in the park and a visit to Dairy Queen.
   Patti could not recall any of the weekend visits.
   Sadly Patti had a bowel accident at dinner which always impacts any event.
   Driving back to her care facility I asked her about quality of life article mentioned in the following entry. She stunned me by agreeing that her quality of life isn't that bad. She has shelter and food. All she enjoys is watching movies and eating. People are kind enough to take her to movies and she gets fed. -- I'm still realing from that response.
   Can my perception of quality of life be that different? I feel stuck in one of those parallel universe warps I mentioned many entries ago.

Quality of Life

The link below is WHY in part we started this journal. While there is nothing wrong with optimistic thinking sometimes I am left with my mouth hanging open... "Quality of Life for MS Patients On Par With Those Without It" ?? WebMD with AOL Health - Most With MS Still Enjoy Good Quality of Life Of course like everything with MS, everybody's story is different. As a caregiver for chronic progressive MS for 18 years I don't know if I would agree about Quality of Life being on par with those without ?? However I will be seeing Patti today and will be sure to ask her opinion. This should be choice. <grin>

from Patti's Mom re: Saturday

(from Patti's Mom re: Saturday)

Hi Patrick

   We had Patti and Sharon L. to the movie Shrek 2 yesterday, very, very enjoyable, Patti just loved the cat, Puss! We also took them out to McDonald's after the movie and had a very nice visit

   Sharon manicured Patti's nails and we chatted with the nurse...I asked her if Patti was on any medication since she seems to have a "head" cold. The nurse said she just had the first dose to give Patti and administered it right before we left for home. I also folded all of Patti's summer shorts and tops and put them in the drawers, I left a note explaining where things were located. I am going shopping shortly and will pick up some sport bras for Patti.

[NOTE: Since admittance to a care facility Patti has contracted two minor cold type viruses. At home she NEVER seemed to have such ailments. I suspect MS as an immune system disease could be a problem in such a communal environment. Therapist had recommended buying next size up sports bras to facilitate Patti’s involvement in dressing herself. This has always been a frustrating step for Patti.]

NYC 5/29/04

Life does have to move on. It can be frustrating and seem discordant not to include Patti in 'Kodak moment'days like a NYC trip but sometimes it would be counter productive for everyone involved including Patti.

As part of our daughter’s 16th Birthday celebration she wanted to take a couple friends to Greenwich Village for the day to hang out, shop, and eat dinner.

With Patti safe and comfortable at her care facility, able bodied youth plus Dad invaded the Bohemian Capitol.  

Interestingly I only noticed one person in a wheel chair all day yesterday in NYC. Now of course, we were in mainly older historic area with coblestones, narrow irregular sidewalks and most shops either step ups or step downs. Probably on the Avenues and larger tourist attraction type restaurants accessibility is more promoted.

Runaway Chair

Picked Patti up for several hours of visiting at home Thursday including dinner and a good old “parents meeting” at our daughter’s school.

 

Sometimes I think I bring Patti as a kind of talisman to ward off over-zealous fundraiser volunteer coordinators. <grin> It works every time.

 

I still TRY to include Patti in what is going on. I realize she most probably cannot grasp what is being discussed and most likely will remember nothing. However, my philosophy has always been to approach this as if the roles were reversed. I believe I would want to be around even if I could not functionally participate.

 

At least the evening had some thrills with some more than exciting moments with a runaway chair. The school has a long beautifully sloped hall that runs the width of the building sculpted into a hill. While pushing Patti up the hall on the way to the meeting I had remarked what a breeze the return trip would be. Little did I know

 

Letting go of Patti’s chair on the return down the hall, I learned how fast her new racing machine can move. It did not take more than a few feet before I was in a serious foot race with gravity. Obviously both the new hallway and Patti’s chair are well aligned as she was traveling straight as an arrow and only gaining speed with every foot, something I was not.

 

The chair was only "runaway" to me, Patti was enjoying herself as if she was at Hershey Park.

 

Finally catching the damn thing I realized you can’t exactly tackle a runaway wheel chair nor lasso it like a cowboy. You can’t stop it abruptly or Patti would shoot right out. An entire new caregiving skill had to be invented on the spot. In the best tradition of TV's The Fonz, I was able to retain my cool and pretend like I meant to do the whole thing the whole time, like some amusement park ride. (Maybe I did?)

 

One of Megan's school mates was trying to give me a thank you card from the group for helping out the past weekend. She had approached at the beginning of the chase. I heard her clip-clopping fading in and out through the race as she was wearing flip flops. She caught up to us at our stylish finale and successfully presented the thank you card.

 

I worry about how a Mom so disabled with MS impacts Megan's social world when I bring her along to such events. However in this case, I suspect the teen age gossip mill would be buzzing less about MS and more about about Megan's Mom roaring down school hallways like Evel Knievel. <grin>

 

How we avoided running over anyone else I don’t know? I just know there are a couple dozen people who will think twice about wheel chairs being slow. <grin>

 

Disabled or daredevil, it's all in the eye of the beholder. And how much craziness the caregiver brings to the pit crew. <grin> Living with MS, can turn even "parent's meetings" into something unique.

Hedonism VS Sacrifice

Living with MS cannot really be separated from caregiving. Depending on progression more and more centers on the caregiver. Here another unique factor enters the equation.

 

Every caregiver brings a different set of values and philosophy to the table. Experience and growth necessitate constant reassessment and evolution. Your core primary values have to be discovered and tested

 

Our American culture is not the best of environments for long term support.  Hedonism is trumpeted daily while sacrifice tends to be whispered in places of worship on weekends. I believe the majority of marriages dissolve in divorce anyway without any challenge like MS. Hell, we were attacked as a nation and thousands murdered less than 3 years ago and our resolve has broken into squabbling.

 

Culture or society is not going to support or reinforce you. If anything the temptations of escape will grow exponentially. It’s only rational to look for the easy way to handle it.

 

My friend Renee kids me that my durability can be traced to a Catholic obsession with martyrdom and guilt.  I was raised Roman Catholic. Today I would label myself a “depending” Catholic. It depends if God and I are speaking at the moment. I hold him responsible and some weeks I am not in a forgiving mood.

 

Fortunately you are too busy to have the time to ponder the meaning of your life or what’s in it for me? If you ever did, you would run out the door screaming never to be seen again. <grin>

 

Bottom line, it will be about you and what you are made of.

The MS War in Summary

Whether AMA/FDA or Alternative Medicine we’ve tried what we could afford and more.

 

Medical insurance certainly controls the agenda with the AMA/FDA treatments. Patti’s chronic progressive MS does not always qualify for some treatments du jour.

 

Of the ABC’s only Avonex was tried for significant time. B (Betaseron) is a story unto itself, and C (Copaxone) is an exclusive relapsing remissive MS kind of thing.

 

Corticosteroids and chemotherapy have been rolled out as big guns to try and slow the progress

 

Never having complete faith in medical science, after all they go home at 5 PM. We explored alternative medicine in part because AMA/FDA profiteers were so adamant in their warnings not to.

 

From diet to clinics in Germany to honey bees we searched for hope. You HAVE to! Living with MS is also about always warring with MS.

 

Depending on progression the role of the caregiver spouse moves more prominently to carrying the struggle.

Swank Diet

The “Swank Diet” exists somewhere out there between ‘alternative’ and ‘traditional.’ At 35 years of age it’s probably the grand daddy of all MS treatments.

Anti-red meat it may border on sacrilege to current diet mania for able bodied people. Once again, inquiring minds need only jump to http://www.swankmsdiet.org/ for more information. In a nutshell it is a diet low in saturated fat and rich in polyunsaturated oils contending our modern eating habits are a major factor in health.

Like the Interferons it is encouraged at onset of diagnosis for maximum benefit.

Again Patti’s rapid progression in visual impairment and hand coordination seriously impaired her ability to prepare food.

Cooking like too many other chores was just heaped on caregiving, which was an increasingly challenging juggling act between spouse caregiving, basically single parenting, homemaking, and trying to work.

The Swank Diet never really got off the ground. Whatever promoted benefits, it was too much work for our situation and had NO taste appeal to either Patti or a growing child. Food requires a fun factor in our family environment.

However as a related footnote, I should point out that for reasons that make no sense. I bought the South Beach Diet book in May ’03. It sat on our kitchen counter for 8 months. (marinating, I guess )  In January I opened it and tried following it.  I’ve lost 40 lbs in 4 months, and never found anything easier to follow or do.  Caregiving was definitely taking a toll on me over that last year. I was increasingly grasping out for health lifelines. From diet to long term care for Patti there has been a shift to self preservation.

Cytoxan

Chemotherapy in particular Cytoxan was tried early in Patti’s diagnosis.

 

I remember our daughter was in pre-school at the time because there was concern over exposure to the myriad of diseases that breed in pre-school. Cytoxan is a powerful immune system suppressant.

 

The principle behind chemotherapy and MS is to suppress the immune system because in a sense MS is the immune system gone amuck. That‘s the simplified two line explanation. For ‘inquiring minds’, volumes of documents are available on NMSS web site regarding chemotherapy and MS at

http://www.nationalmssociety.org/Sourcebook-Chemotherapy.asp

 

Did it work? NO! Patti lost hair by the handfuls and trying to increase distance from a mother already increasingly disabled with MS and a 4 year old was cruel. 

 

MS can never be isolated from “living with MS”. The unique lives and families that surround each person diagnosed with the disease are part of the equation.

Prednisone

Prednisone has been the most frequent treatment throughout the 18 years

 

Treatments have ranged from maintenance dosages to "Prednisone Pulse Therapy". In this latter, Patti would swallow 1,200 mg of Prednisone per day over a three day period once a month. (A homecare friendly adaptation of the ‘Solu-Medrol IV Drip’ outpatient treatment.)

 

Prednisone was usually thrown at periods of more active exacerbations or flares. For ‘inquiring minds’ additional information is available from NMSS web site regarding CORTICOSTEROIDS as treatments for MS attacks: http://www.nationalmssociety.org/Sourcebook-Corticosteroid.asp

 

Did Prednisone work? It seemed to usually help with an attack. ‘Prednisone Pulse Therapy’ in particular I swear could make a corpse walk. Patti always had a few extraordinary days before the bottom fell out following ingesting 3,600 mg of Prednisone. The days that followed euphoria was caregiving hell.

 

Prednisone has risks. Early in diagnosis when Patti was using as maintenance self image related problems such as hair loss, weight gain, and rounding of the face developed. Osteoporosis, diabetes, cataracts, and stomach ulcers are more long term side effects and so far have not reared their ugly heads

 

However during scary days at home with multiple falls, Prednisone was a tried and true stabilizer. 

Avonex

“A” is for Avonex in the MS alphabet.  Patti used Avonex for a little over 2 years.

 

Here again impaired vision and coordination prevented self administration by Patti. Her neurologist arranged training in subcutaneous injections for our entire family and all possible caregivers. (What a difference from the days of NO support for Calcium EAP.) Even our daughter now middle school aged was included in training.

 

Avonex is an Interferon and simply put is designed to prolong the time between MS exacerbations thereby prolonging functional time of life. Of course much like Betaseron it was oriented toward early diagnosis and remitting remissive MS.

 

Patti’s neurologist went to bat with our insurance. At the time, some European trials were showing success even with chronic progressive MS. Fortunately our insurance agreed to pay and we entered the Avonex era at a more than affordable copay of $25 every three months, versus a listed price of $980 per month.

 

From a caregiver perspective, weekly subcutaneous injections were a breeze compared to bee stings or twice weekly intravenous injections with Calcium EAP. Side effects were non-existent. Patti NEVER demonstrated any of the flu-like symptoms.

 

Did It work? Not really. Maybe it slowed some progression of physical symptoms. However the onset and rapid deterioration of memory and thinking skills, quality of life issues like both bladder and bowel incontinence, and more all began and progressed during the Avonex era. 

 

Avonex and the interferons eventually joined the ever growing junk yard of efforts to slow the beast for Patti.

 

For others with MS, Avonex is a license on life. MS is baffling.

NEW set of wheels!

When all your waking hours are spent in a wheel chair, a NEW set of wheels is a BIG DAY! Patti’s new custom wheel chair arrived today and she had her final adjustment fitting this morning.

 

As President Bush was also in Carlisle today there was some concern security road closings and such might screw up the big moment. However Carlisle, PA is apparently big enough for a Presidential visit and an even more important wheel chair delivery.

 

They may have to put speed bumps in the halls to slow her down. <grin>

Thursday outing

Less I digress entirely into background, let me pause to share Thursday’s outing.

I picked Patti up following lunch. (I arrived 15 minutes after lunch had ended, though sadly Patti could not remember what she had eaten for lunch.)

We were off to our attorney’s office to sign final papers for Medicaid application for medical assistance. It was a beautiful day for a ride. Even some laughs as my 'native guide' was useless. This she could not blame on MS. This is her home turf and her sense of direction and local geography made me wonder how she ever had a license to drive.

Next stop was Tri-County Library for the Blind to get Patti’s talking book machine serviced. While waiting in the lobby, Patti surprised me by finding a concession counter that sold ‘large print’ items. She could actually SEE them. We bought a deck of playing cards and a crossword puzzle book. 

Then I dropped her off at her parent’s home for a visit and dinner. Home made ‘moon pies’ from an aunt, pizza, and plenty of TLC does beat institutional care for a day. She can be a guest with all the pluses yet hosts are not shackled with the caregiving responsibilities.

Some days can be somewhat normal, overall, no matter where they begin and end. Life does go on.

Betaseron

Patti like so many with MS had her “ABC” drug era. Her neurologist fought to have her included in the original Betaseron trials to give her at least a chance of getting on the medicine ASAP. The point to the ABC drugs is to get on the medication early in MS diagnosis.

 

Betaseron rejected Patti repeatedly for those trials because she was already too advanced. They obviously wanted nothing to screw up their trials and only happy shiny results. With amazing audacity Betaseron assigned Patti a lottery number once approved by the FDA soliciting her to begin Betaseron immediately because of its ‘proven results to help patients with MS’. Yeah right!

 

At that time our medical insurance would not pick it up and at nearly $1,000 a month it was out of our budget. Especially for a drug whose manufacturer had twice rejected Patti for their FDA trials as too advanced, yet somehow when money was involved had a reversal in thinking and felt it suddenly could benefit Patti.

 

Don’t ever think charlatans can only be associated with the world of ‘alternative medicine’. They lurk anywhere there is money and people in need.

 

Yet some people with MS do have positive results from Betaseron. Each patient is unique, and each family situation is unique.

 

Anyway “B” never even got off the ground … “A” to be discussed in the future, followed a couple years later. (So much for alphabetical order, after all what is logical about MS?)

HOPE fuels the fight

Please know there was ALWAYS hope and enthusiasm associated with the initiation of every new treatment.  I may not always capture that in retelling the story. Please know and remember it was with us AT ALL TIMES. HOPE fuels the fight in living with MS.

 

As a caregiver you will know defeat. 

 

Without sounding like something off the SciFi channel, it’s a lot like parallel universes. Your spouse with MS has one way to have to deal with it all, yet you have a parallel though no way identical path.

 

They have no choice. Yours is founded in choice. It can get weird!

Bee Sting Therapy

“BEE STING THERAPY” was another ‘alternative medicine’ treatment we explored.

 

Living at the time in College Park, MD, local news began to carry the story of Pat Wagner also seriously disabled from MS and from nearby Waldorf, MD who was reporting extraordinary results from “Bee Sting Therapy”.

 

Making NO ENDORSEMENT but for “inquiring minds” here is an additional link you can follow  for more detailed information about Pat Wagner and bee sting therapy from the Discovery Channel.

http://health.discovery.com/centers/althealth/sclerosis.html

 

Patti began a program of, at peak, two dozen bee stings every other day for almost a year and a half. Her vision and hand coordination had deteriorated beyond her ability to self administer so I had to do the ‘stinging’ for her.

 Patti went through some extremely rough weeks withdrawing from traditional meds nearly triggering an exacerbation to begin ‘bee sting therapy’.  

From a caregiver’s perspective this treatment took mind boggling courage. No matter how much ice and routine is involved the bottom line is you are receiving thousands of bee stings.  

 

Some particularly frustrating days it was also caregiver therapy. ‘Stinging’ Patti could have a therapeutic release <grin>. 

 

Though it was extremely time consuming, it was never boring. The honey bee is an amazing creature and a worthy adversary. Like something out of a Kung Fu movie you have to first catch one with a pair of tweezers out of a box containing dozens of other bees. Second, while holding the captured bee with the tweezers in one hand, somehow close the box with your other hand before the others escape.  Third, you have to hold the captured bee next to the patient’s skin at predetermined locations to ‘sting’. Fourth, you put the used bee into a container for release later. Then repeat the whole cycle over repeatedly. Periodically going back to remove any stingers left behind by some bees.

 

It became a family project every other evening. Patti was the stingee; I was stinger, and our daughter (at this point 8 years old) in charge of escaped bees. Amazingly neither our daughter nor I were ever accidentally stung.

 

Did it work? Once underway that hopeful pattern of positive immediate results occurred, followed by stability, and then after the year anniversary mark once again MS progression began to trump all. This too was chalked up to another valiant effort.

 

Next onto traditional AMA / FDA treatments that have also met similar fates against the relentless foe, MS …

Alternative Medicine

Battling MS is a desperate fight. You don’t really leave any stone unturned if possible.

 

‘Alternative Medicine’ has been explored equally unsuccessfully as traditional AMA / FDA approved treatments.

 

The two most significant attempts were “Calcium EAP” and “Bee Venom Therapy”.

 

“Calcium EAP” involved essentially a mega vitamin/mineral program. Over 10 years ago, through the generous love of Patti’s parents they accompanied her to Hanover, Germany. Patti was admitted for two weeks to a clinic operated by the late Dr. Hans Nieper. Super simplified, ‘Calcium EAP’ was allegedly an energy conductor. If used in high dosages, it temporarily coats the nerves and aids in the transmission of messages. Thereby essentially supplementing the deteriorating myelin sheath. Treatment involved daily intravenous injections, tapering to twice weekly after release from the clinic. As this was not FDA approved it had to operate outside the US. Once home no licensed medical professional would assist with injections so I had to learn to give intravenous injections. Unnamed licensed and understanding professionals were kind enough to assist in acquiring intravenous syringes. ‘Calcium EAP’ was purchased and shipped in from Germany.

 

Did it work? Patti left the US in a wheelchair and returned from Germany walking. That was an emotional moment at the airport, especially for a certain 4 year old at the time.

 

All things considered the year that followed was good.  

 

After about a year MS started progressing downward again. We gave Patti’s calloused veins a break and chalked it up to another valiant effort against an invincible foe.

 

Meaning NO ENDORSEMENT but simply as an elaboration for inquiring minds, I found this link to another's story offering a more in depth related  personal experience: 

http://www.14ushop.com/flyin-blind/pg000003.htm

 

More about “Bee Venom Therapy” later. Stay tuned ….

Nurse Practitioners

I wanted to follow up on a comment posted to ‘Blood in Urine’ journal entry. It is indeed true that the most pragmatic and beneficial help we have ever received has come from Nurse Practitioners.

 

Neurologists and Medical Doctors frankly have a tendency to treat a MS Patient as some abstract enigma.

 

Nurse Practitioners seem uniquely founded in the understanding that a patient is a unique human being and exists within the context of a family.

 

Yes, these are generalizations. I’m sure there are exceptions. We have however found them to be more often true than not.

 

MS is unique to each unique person who in turn has a unique home environment.  

 

While Patti still sees her neurologist twice a year, we replaced ‘family physician’ with family ‘nurse practitioner’ and quality of life improved for all of us.  Nurse Practitioner / Neurologist relationship has been exponentially better than Doctor / Neurologist relationship in terms of addressing Patti’s unique needs. 

Blood in urine?

Got a call last evening from care facility advising me they had done a urine test as staff had noticed what appeared to be blood in Patti’s urine when changing her Depends.

Communication and teamwork IS improving. I appreciated the call and their concern. We are all getting better at meeting in the middle. Transition is improving.

Most likely it is ‘break through’ menstrual bleeding.

Because of her MS Patti is both unaware of menstrual bleeding and unable to deal with pads and such because of lack of vision and coordination. We’ve tried to control menstrual flow with LoEstrin used consecutively for 3 months every day then off for a week before repeating cycle. Before this treatment plan, I don’t know how we got through years of monthly ordeals that more than impacted quality of life. A good friend who is also a Nurse Practitioner suggested the approach. It has been a godsend.

As a MALE caregiver spouse this was a particularly frustrating part of support, laundry, and clean up.

Of course on the other hand it is probably good that care facility did do a urine test. Familiarity can be dangerous in MS. You have to be careful NOT to ignore potential signs of other medical problems just because someone has MS.

Medicaid application

The 7" of paperwork to the left is "supporting documentation" for our Medicaid application for assistance with Patti's long term care. That is a 12" ruler propped between paperwork and table top diner juke box for perspective. 

You can go to Medicaid web site and check out your State's specific guidelines at: Click here: Welcome to the Medicaid Home Page

If you are independently wealthy and/or have long term care insurance enjoy life. If not, eventually you will most likely need to visit.

Our suggestion as mentioned before would be to also visit an elder care attorney. Get your financial house in order, specifically in consideration of long term care, just in case MS accelerates.

Sunday in the park

I rolled Patti to the park next door to care facility for an hour or so of fun before dinner while our daughter finished some procrastinated homework projects today.

 

Living with MS doesn’t have to be always serious.

 

     "Though nothing, will keep us together

     We could steal time, just for one day.

     We can be Heroes, for ever and ever

     What d'you say?"  David Bowie, "Heroes"

 

An 'able bodied' day

As Patti’s MS progression over time became significant we learned we had to divide family time between ‘family’ and ‘well’ or ‘able bodied’ activities. After all we also had to raise a daughter to live and succeed in a basically able bodied world. 

MS had a way of throwing last minute unexpected changes into any plans. Patti’s level of participation could never be predicted. We found it simpler to just divide time between the two ‘worlds’.

Yesterday was our first able bodied kind of day since Patti was admitted to her care facility. For the first time in years Patti was also SAFE and professionally cared for while Megan and I could play. -- We SEIZED the moment!

Picking Megan up from school on a gorgeous ‘summer’ day in Spring we headed to Hershey Park to renew our season passes and catch a ride on the new roller coaster.

“Stormrunner” is of the new generation coaster that launches you from 0 to 70 mph in 2 seconds up a 90 degree angle to drop you, of course, at an equal angle for a fall of 150 ft. just to get the heart started. <grin> Megan and I are coaster addicts. Go ahead and take a virtual ride. http://www.hersheypa.com/attractions/hersheypark/rides/new_attraction/virtual_movie.html 

Lines were minimal and timing was perfect! We grazed our way through the Park on amusement park cuisine waiting for start of the evening’s concert featuring David Bowie.

 

The man and his music are timeless. He rocked for a full non-stop, 2 and a half hours with songs from throughout his 30+ year career. It was mesmerizing. 

It doesn’t get much better than rockn’ roll under the stars at an amusement park on a summer night in Spring. 

Could Patti have enjoyed it? NO! Not at this point in her MS progression. 86 degree temps are not MS friendly. She can't really see, and 'accessible' for modern coasters is more a legal concept than a functional aspect. Concert crowds of standing, cheering fans and megadecibel level sound are 'overpowering'  when you are at chair height, and easily confused.  We take her other times when the time can be focused on her and what she CAN actually enjoy.

It always feels a bit strange to bounce between the two worlds. However it's worked and helped keep us all together through the years.

Ice cream therapy

Megan (our daughter) and I dropped by to take Patti out to Dairy Queen for dessert.

 

Sometimes the problem is finding Patti. <grin>. The social butterfly was in the main lounge for movie night on the MEGA screen TV. The temptation of ice cream was sufficient to lure her away.

 

It was a fun though messy visit. But that’s OK too as I don’t have to do her laundry anymore.

 

Megan gave her an electrostatic voice activated lamp for mother’s day which has become a big hit with the staff. Talking to Patti your voice is displayed in electrostatic patterns

 

This also raises yet another relationship impacted by MS in all this. I’ve certainly dwelt on spousal caregiving. I touched on Patti’s parents. Yet there is also Megan

 

Turning 16 is a world of challenges in itself. Toss in your mother’s admittance to a long term care facility and we are talking uncharted territory.

 

You could go nuts if you let yourself. You just have to seize the moment. This moment tonight was simply about making the most of enjoying some time together and ice cream, of course.

 

Ice cream therapy – the world needs more of it

Visiting

(from Patti’s Mom)

 

Believe it or not Patti told me you are getting the book machine repaired. She was in a very good mood after getting a perm. She rec'd a very nice letter from my former boss, Jeff Walters, remember him? He's the one that married you two...he sent Patti a CD of his wife playing some classical numbers, I brought it home to make a tape so Patti can then play it on her tape recorder when it is repaired. He also sent a book written by a friend of his...read Jeff's letter, that will better explain the book than I can.   "Georgie" from across the hall came over for a short visit, a good friend of hers is in the Sweet Adelines with me....you can really see the frustration in her face when she is trying to communicate, soooo sad, BUT my Patti made her laugh!!!!!

 

[Note: Library for the Blind supplies an extraordinary user friendly tape player and library of tapes for blind and visually impaired people. It does periodically need maintenance which each local city branch is glad to do or supply a new machine. I took Patti’s machine the night before I am amazed she remembered.

 

Yes, there is a hair parlor on site.

 

The other interesting line in Gloria’s note above references our marriage ceremony. A day does not go by that I do not shake my head at how hard we worked on our vows. At Patti’s insistence they EXCLUDED any promise to “have and hold in sickness and in health …” She had already been diagnosed as probable MS and did not want the future linked to MS though at the time MS was in remission.

Towering paper

Just measured paperwork and at 5.25” I’m stopping for the day. I’m guestimating that’s about 3/4 of what is required to file for Medicaid.

 

Remaining is primarily computer generated financial reports, average expenses, etc.  I cannot even imagine what people who are not empowered with home computers or obsessive organizational skills must face.

 

Had to run by care facility to pick up an invoice of physical therapy bills. A perfect example of well intended services that can get out of control if not monitored. Currently our bill stands at $3,000 and I stopped it over a month ago.

 

No one in the system clearly grasped MS and/or what medical insurance considers acceptable treatment for chronic progressive MS. Unlike home care and private physicians there are not the checks and balances of communication in institutionalized care. After all they are not financially responsible so why not? Any potential reimbursement by medical insurance is currently “to be determined”.

 

An institution sees money quite differently than a family.

 

Arrived to find two staff members working to clean up Patti who had an accident in bed while napping. Clothing, linen, even floor needed mopping. That is one function of home care I DO NOT miss! Frankly they were also a lot nicer about it than I would have been. There are also many PLUSES to a care facility. "Care" is the major one.

Medical assistance

Can you put your hands on 3 yrs of EVERY page of EVERY bank statement? NO EXCEPTIONS.

 

That's just the proverbial tip of the iceberg of the additional workload expected of the caregiver spouse in preparation for application for medical assistance to pay for long term care. Compiling literally inches and inches of paperwork is what I have been up to since Mother's Day.

 

Sinking in medical debt you have to protect yourself and your family. As I mentioned in an earlier post you have three choices: long term care insurance, independent wealth, or Medicaid. We are not independently wealthy and with MS beginning 18 years ago long term care insurance is not available once you have such a diagnosis as MS. Applying for Medicaid for Patti or inevitable life on the streets for the three of us is the choice.  

 

The decision to have to abandon home care is tough. The transition is exhausting. It's hard enough to ask for help; to beg is something you thought you would never resort to. You can rest assured our government guarantees that you must grovel and your family be economically disemboweled.

 

Facts and workload aside there are emotions associated with each step that you can't even process before moving onto another, like jumping from roller coaster to roller coaster. Are you a caregiver?  Spouse?  Parent?  Homemaker?  Head of family?  How has all of this changed these? The responsibilities drive you forward deeper into unknowns.

 

How did it ever get so desperate? Our system is so skewed against homecare for seriously disabled people that you find yourself suddenly at the precipice of the age of institutional care no matter how well informed simply because life isn't predictable.  

 

What is MS? We can assure it is a lot more than a neurological disease.  

What about older entries?

I’m as new to this as any reader is, and that is an excellent question.

 

1 … When you get to the bottom of this page CLICK on “View Older Entries”. That should automatically open the rest of this month’s entries.

 

2 … To view April notes click on pull down arrow next to ‘month’ in upper right corner of the “view older entries” page. Select April, and then click “GO”. April titles will display and select the ones you want to read.

 

3 … “Caregivingly Yours,” journal only began in late April. Most of the background information is included in those earliest comments.

MOTHER'S DAY

Hallmark Holidays that begin and end in long term care facilities are intensely poignant. There is no life sized scale you can counter balance with good intentions.

 

Most of Mother’s Day was an away day with Patti’s parents and family then afterward at our own home.  Visiting with our cats was a special request and treat for Patti.

 

Patti seemed to enjoy herself outside of MS symptoms plaguing her day.

 

An episode of spontaneous vomiting preceded lunch (a common though fortunately intermittent symptom). Patti’s stamina noticeably weakened through the day. Spasticity in her right leg was prominent by end of day. Spasticity is one MS symptom Patti has rarely manifested. ?? Bladder incontinence necessitated three Depend changes over 6 hours. Cognitive problems and mental confusion like stamina worsened with the day.

 

The simplest travel and activity we 'able bodied' people take for granted can take such a different and unpredictable toll on someone with MS.

MS Ribbon of Hope

You can get a “MS Ribbon Of Hope” from your local chapter of the National Multiple Sclerosis Society. You can find your local chapter information at http://www.nmss.org/ 

 

Speaking of “unpredictable effects”, I took Patti shopping this evening for a gift for her Mom for Mother’s Day. She had amazingly held the idea in her head for at least over a week as to what she wanted to buy. Yet on the drive back from shopping and successfully purchasing the gift she could not even remember what she had bought. 

Visitors and more visitors

Patti’s life long friend and unofficial sister, Sharon, was a genesis for this on-line journal when she began leaving a written journal for visitors in Patti’s room. Some excepts will give you a sample of visiting:

(from Sharon) April 24, 2004

   Patrick, Megan, Harold, and Sharon visited this evening. Along with Patti, we accompanied Megan on her second driving lesson. Since I am able to write this, it means that none of us were maimed or killed – we didn’t even get sick!! Megan did very well indeed. We also made a trip to Dairy Queen and Patti had her first “Chocolate Utopia”. No, Megan didn’t drive. Patrick did, and in my opinion, someone else should teach Megan to drive. Patrick aims at curbs!!! Until next time, love from best friend/sister, Sharon.

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(from Patti’s Mom, Gloria) April 26, Monday

   Harold, Gloria, and Lorraine visited. We all played Trivial Pursuit. Harold and Gloria won the game. We came back to the room and watched the “Ellen Degeneres Show”.

   Patti’s Depends were very wet, so I helped her change her clothing.

   We walked Patti to the dinning room and then departed for home.

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(from Patrick) April 26 Monday PM

   Patrick wounded see BLOOD (a drop of blood was added to page for dramatic effect) measuring for wheelchair. NO first aid kit in room!

   Patti had PBJ and chocolate milk delivered during visit at 7:30 (bedtime snack?). Some people get treated well. <grin>

   Of course, PB&J is NOT on South Beach Diet.

   ‘Ordering’ a custom wheel chair is a pain in the ___. However, it should be a major jump in comfort and ease to operate.

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(from our daughter Megan) April 28th

   Warning for all readers, there is a potential AIDs hazard on the opposing page (referring to my blood stain).

   The perfect one and father have come for a visit. Found mother wandering down the hall, vehemently proclaiming how insane everyone here is.

   The world’s newest room decorator has decided to spiff up the place a bit, but it is the opinion of this girl there are many others better suited to the task.

   Had a lovely time with ‘The Creature’, Mother’s latest bingo win. I suspect they’ll turn her into a bingo addict at this rate.

   New wheelchair coming soon!

PS Dad took twenty minutes to figure things out and freaked out all the while.

[Editor’s Note: While I encourage freedom of the press in this journal I’m quite sure the founding fathers meant to exclude teenagers.]

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(from Patti’s Mom) May 1, 2004

   Gloria, Harold, and youngest rambunctious granddaughter Victoria ….

[Editor’s Note: Visitor log entry ended abruptly at this point. Rambunctious was obviously an understatement.]

Communication

“Transition” is open ended in both concept and definition. Letting go has been surprisingly difficult. I thought (even dreamed <grin>) it would be easy. When you do EVERYTHING all the time it’s strange to learn to let others start doing it.

Over time, home caregiving skills evolve as you adapt to progression and other times are simply intuitive. That isn’t exactly an ideal merger with the bureaucracy of institutional care. Three shifts of people replacing just you have an entirely different ‘approach’ from communication to consistency.

It’s been almost 2 months since Patti was admitted to her care facility and I find myself still NEEDING to monitor.

A perfect example happened just this week. I received a notice from Patti’s medical insurance notifying us they would not pay for a thyroid level test that had been submitted two weeks after she was admitted. (????)

To make a long story short for background, Patti had ‘Graves Disease’ prior to MS and her Thyroid was removed. She takes Snythroid daily as a replacement.

Some shift staff member when distributing meds had double checked Patti’s records and couldn’t figure out why she should be getting Synthroid and, if so, were levels even correct. That ‘flag’ triggered a blood test which confirmed levels and accuracy of prescription. That was basically a GOOD call by the shift staff.

What was WRONG was that I was not called or notified. I only became aware a full month later because payment was rejected because Patti had just had a physical and full blood work just before admittance.

I discovered what had happened is that her care facility had misfiled her medical records in the wrong section of her file. Shift staff had only looked where they were ‘supposed’ to be. This problem REMAINED uncorrected until I followed up on the insurance charge.

Fortunately this was minor and had a positive result. However it does not require a great imagination to see how an urgent dilemma could have spun out of control because of misplaced medical records. Or because no one thought to call Patti’s spouse caregiver.

Institutional bureaucracy by its nature has a tendency to want to think that everyone operates as they do. As a spouse caregiver I’m only used to doing it my way.

I know we NEED three shifts of people to properly and safely care for Patti. It will take time to make it succeed. “Transition” is not a door that opens and closes on home caregiving. It has been two months and I am still discovering and learning.