YEAR IN SUMMARY: Part 5 of 5 Was It Worth It?

Sharing a home cooked, family dinner of corned beef and cabbage on St Patrick's Day with Patti created among many things time to mull over and wrap this up.

 

Was it all worth it?

 

"Circle the wagons" is the American frontier family spirit against all odds or any enemy. Our culture, legend, and lore teach us that is what families should do.

 

Somewhere along our 15 year journey of home caregiving that 'circle' of wagons became more of a 'black hole' consuming everything both tangible and intangible.

 

The present was overwhelming and the future was chilling.

 

Patti's MS progression had created several factors that demanded attention; safety, 24/7 attended custodial care, and isolation. Home care could not satisfactorily resolve these issues.

 

SAFETY

YES! First and foremost, it was worth it for Patti's safety alone. Patti has fallen only three times in a year since being admitted to a care facility. She fell more than that daily in homecare when unattended while attempting transfers. Safety is not an issue that can be 'partially' resovled. Dangerous accidents happened such as a stove fire, or pulling a 32 inch, couple hundred pound TV down on herself. MS is not an acute fatal disease but many with MS suffer serious injuries or are at risk of worse.

 

CUSTODIAL CARE

YES! Patti's quality of life has opportunity. Total incontinence of bladder and bowels and inability to participate in activities of daily living such as personal hygenie and changing yourself or dressing is overwhelming and frustrating. She now has sensitive, professional attended help 24 hours a day, 7 days a week.

 

ISOLATION

Isolation is a prision of unimaginable loneliness. All of the above problems plus increasing memory loss and cognitive and reasoning challenges were increasingly isolating Patti. YES! Patti now has the opportunity for daily social contact both structured and informal. Unlike home care, she is not the disabled person in a world of able bodied people but among peers more like her in abilities.

 

IN CONCLUSION

For Patti's care now and especially in the future YES it was worth it! Patti is content and always has been with the transition.

 

What about Megan and myself?  ... Patti has MS, she has never had choice. Caregiving is choice, and choice always has consequences. You can evaluate decisions, but you live with consequences ............. and, also dreams.

 

"The phoenix hope, can wing through the desert skies, and still defying fortune's spite; revive from ashes and rise." 

Miguel de Cervantes

 

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: caregiving, care facility

HAPPY ST. PATRICK'S DAY

 Two weeks ago I created these for St. Patrick’s Day. Sadly the march toward Spring has left only the pictures. The recipe was simple 1) mold nature 2) spray with cold water mixed with green food dye to soak into the snow 3) let freeze over night 4) spray frozen surface with green spray paint.

Maybe the Irish playwright Oscar Wilde best explains it, “Imagination is a quality given a man to compensate him for what he is not, and a sense of humor was provided to console him for what he is.”

The Ides of March

Patti and Julius Caesar share a date of significance in their lives, the "Ides of March“.  Yesterday, March 15th or the 'Ides of March' was the first anniversary of Patti’s admittance to a 24/7 care facility.

 

We celebrated last night with what else but an Italian Dinner at home.

 

Best of all from a caregiving perspective, Patti’s strength and physical coordination was the best it has been in a while. Transferring was hassle free and the evening was without incident.

 

It was also Patti’s lucky day as she won the drawing for the facility’s St. Patrick’s raffle for the pictured gift basket of personal care items. (And gave me a chance to play with my new camera phone <grin>)

 

Next it is time to wrap up the YEAR IN SUMMARY with the final part, was it all worth it?

conspiracy theories

“ … Paranoia strikes deep 

Into your life it will creep..."

Stephen Stills (Buffalo Springfield), 1966

 

We have been aware of conspiracy theories since the early 1990’s that insurance companies engage in deliberate campaigns of errors and confusion entrapping you into a termination or retroactive termination of your policy for expensive chronic diseases like MS. Time, money, paperwork, and human resources are on their side in this war of attrition

 

I am not a big fan of conspiracy theories but have to admit that the paperwork of Patti's medical insurance has taken bizarre and ominous turns since last Summer

 

One month after she was approved for Medicaid I entered the Twilight Zone when her private insurance was suddenly and without notice or explanation ‘retroactively terminated’ back almost 5 years.

 

I have spent a full-time, part-time job ever since and continuing today on the phone, writing letters, returning forms, searching records, etc. That original incident took over 3 months to resolve and almost another 6 weeks to restore. (A mistake, of course.) That incident was like a stone thrown into a pond of problems that continue to ripple across related areas. That incident triggered an avalanche within Medicare that has become bigger than the original. Private insurance is at least staffed by professionals. Dealing with Medicare challenges the very core of your sanity.

 

This chapter should be closed. Ironically Patti is no longer legally responsible as she is on Medicaid. The scary part is that all the problems involve retroactive medical bills of Patti’s, some as far back as 12 years.  … and guess what? Because we are married I am responsible for Patti’s medical bills prior to Medicaid, no one else not even Patti. <grin>

 

NEVER prior to last Summer was there ever even a question about a medical bill. NEVER even one was ever resubmitted. I want to believe this is just a coincidence of nightmares, and I will wake up.

 

I separated this from the yearly summary insurance post because I do not believe this is what happens to most people.  I think we are just kind of special <grin>.

YEAR IN SUMMARY: Part 4 of 5 Insurance

Private health insurance specifically prescription benefits can make or break MS treatment options during the course of the disease. 

 

Disabled Americans under the age of 65 who can no longer work are usually eligible for Social Security and associated benefits. Medicare health insurance both A & B (hospitalization and medical care) became available to Patti at this point. Medicare is a wonderful safety net. However it did not help with prescriptions and most aggressive options available to treat MS.

 

Fortunately Patti was able to continue her private health insurance which included the prescription benefit plan through long term disability from her employer. Not as a COBRA policy but as a continuation of coverage at a monthly copay just like an employee and for many years at no cost.

 

International Paper is one of the 'good guys' when it comes to standing by their employee disability benefits. If you ever have to choose between buying two paper products, and everything else being equal, please keep that in mind.

 

Now, over the years as Patti's MS progression shifted in focus to home caregiving needs or what medical insurance likes to label “custodial care”, insurance isn’t of much help at all.

 

Next to nothing is available to help with home caregiving, however on the other hand EVERYTHING is picked up once admitted to a care facility. There really is no middle ground and in a sense the passage to the care facility era is rewarded by the medical insurance industry.

 

In a care facility with Medicare and private long term disability insurance plus Medicaid, Patti is receiving more medical attention, benefits, and therapy than ever before.

 

I would be lying if I said I don't sometimes experience frustration when I see so many resources in use that I tried to get for homecare and was repeatedly turned down. It just seems to me that millions a year could probably be saved and people could probably stay at home longer IF ‘the system’ ever woke up and smelled the coffee. However, I suspect there are too many people with their fingers and jobs in the pie for that to change.

 

However, that is blasphemy! I should and will just fall on my knees, face toward Harford, CT, be grateful we simply have medical insurance, and beat my chest while chanting mea culpa.

 

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: caregiving, care facility

YEAR IN SUMMARY: Part 3 of 5 MEDICAID

“Show me the money …” is unquestionably the major determinant for availability of health care in the US. MS because it is traditionally a disease of middle age catches a person or family usually right in the economic middle. If you are independently wealthy or if you are below a designated poverty level you will have more access to long term care options than someone stuck in the middle will.

 

Bottom line you have to get out of the middle. A lucky year in the stock market or your lottery ticket could rocket you into the independently wealthy category. 

 

The best alternative of them all would be a LTC (Long Term Care) insurance policy. However, as you are already diagnosed with MS, I suspect this is improbable.

 

More than likely you will have to turn to Medicaid and ‘spend down’. Every State is different regarding Medicaid guidelines. You need to sit down with an Attorney and/or Financial Planner specializing in Elder Care Law and develop a Medicaid asset protection plan.

 

Do not confuse Medicaid and Medicare. Medicare is medical insurance and will be discussed in a following summation post under insurance. Medicaid is medical assistance and that's what this post is about.

 

Medicaid application and approval is based on a ‘look back’ period of your family financial assets. Our mistake was waiting too long to try to maximize asset protection. Need was upon us faster than planning anticipated.

 

The catch is you never know when you are going to NEED Medicaid. Asset protection on the other hand is based on the years PRIOR to your application. Unless you are psychic, NOW is the best time. GO vist an Elder Care Attorney in YOUR State and talk  .... Or buy a subscription to the Psychic Hotline and ... believe! 

 

Will you really ever need medical assistance?

 

Let’s look at Patti’s costs specifically for a 24/7 care facility. If a million dollars in out of pocket cash over the next 15 years is nothing to you than just ignore this. If not then read on ...

 

Daily costs

$ 191 (24/7 attended & custodial care) room & meals

     15 RX

$ 206 

 

$206 a day extended out is $75,190 a year. Minus what Patti receives from Social Security that leaves a balance due of $61,150.  I cannot raise a daughter, pay a mortgage and keep our home PLUS come up with an extra $61,150 out of pocket cash to pay for 24/7 care. We had no choice but to turn to Medicaid for help.

 

Additionally Patti and I knew that too much of her care was dependent on assumptions of my immortality and invincibility. It was time to ‘lock up’ her future care. With fading mental and physical health she wanted to at least participate in the decision making process.

 

Our paperwork and application process took almost 5 months to complete through approval; the picture demonstrates the size of the paperwork involved.  

 

I referenced ‘spend down’. Again each State is different, but in general it is economically catastrophic. In a nutshell you liquidate family assets to 'spend down' on medical expenses until you are below poverty levels to become eligibile for Medicaid.

 

The dreams and financial plans of a life time disappear. But then again MS has already begun to erode them anyway. I discovered that dreams built on a foundation of money wipe away as easily as images on an Etch-a-Sketch screen. There are moments when I wonder if I'm not in the middle of some Old Testament kind of lesson about something. Frankly it all still leaves me reeling at times.

 

More importantly, the PLUS is that Patti is secure, safe, and has 24/7 carefor the rest of her life. Some days I have to keep reminding myself of that positive outcome. And when you add it up, it is an extraordinary safety net. MS is not an acute killer. At 49, Patti could easily live to 65 and beyond. At just 2005 costs (not including inflation) that will be a million dollars in out of pocket care giving costs over the next 15 years. And as we all get older, as Patti progress, and care giving becomes even more physically demanding what other tolls would it take on others? We knew we had to move in this direction sooner than later.

 

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: caregiving, multiple sclerosis, care facility, Medicaid

YEAR IN SUMMARY Part 2 of 5: did not need a weatherman to tell her which way the wind was blowing

About 5 years ago we began to look for something more than homecare. MS was beginning to impair Patti’s cognitive ability, reasoning, and memory. Lability and Pseudobulbar Affect in particular among other intermittent MS emotional factors were complicating Patti’s ability to interact with people. Incontinence was increasingly a problem both bladder and bowel and that totally affects quality of life.

 

We also were a family with an 11 year old daughter when this process began. The increasing MS related mental and emotional problems and the increasing custodial care needs unquestionably affected the entire family and our interaction with the community of neighbors and friends.

 

Patti's safety was a growing concern. Falls increased from frequent to multiple times daily.

 

Day by day, Patti could no longer be left unattended for even the briefest periods. Patti’s increasing inability to direct her own care reduced the options for contracted home care helpers. Symptoms were intermittent at first but Patti could see the immediate consequences and did not need a weatherman to tell her which way the wind was blowing.

 

Our process was interrupted for about two years when we moved to Pennsylvania in a failed attempt to improve options for informal caregiving help. That plus Pennsylvania’s age restrictions for adult day care and increasing need for 24/7 care we began to meet with attorneys specializing in elder care law and explore the legal and financial ramifications of nursing homes while Patti was still lucid most of the time.

 

Over in favorite sites you can read tons of material on MS and Long Term Care for further information.

 

The NMSS claims that 20% - 25% of those with MS will eventually need Long Term Care. Anticipate and explore options together before decisions are needed. All the information in the world can help but it will not make your decision for you. That will be one of the hardest you ever participate in.

 

It is not an instant process, at least not in Pennsylvania. We first began exploring and visiting actual facilities nearly a year before admittance. As a tip, consider not just what the facility has to offer but it’s proximity to you and other probable visitors. There are structured layers of fail safes both medical and social to prevent a rush to judgement.  

 

Then it gets to the money. In many ways it is simpler to buy a house <grin>, which sets up the next chapter on money…

 

"...for money makes the world go round ...”       Cabaret

 

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: caregiving, multiple sclerosis, care facility

YEAR IN SUMMARY: Part 1 of 5 Was the transition expensive?

March 15th (the Ides of March) will be the one year anniversary of the end of home care and the beginning of the care facility era. This work was about that transition.

 

MS publications and materials historically have ‘forgotten’ the individual stories that do not shine with success. We simply chose to use this new medium as an alternative to present one family’s reality in “living with MS”.

 

What the future holds for “Caregivingly Yours”, I don’t know. I do know it is time to start summing up the experiences of this year.

 

As always I must stress the disclaimer that MS is unique to every person, and every person with MS has a unique family situation.

 

Was the transition expensive?

 

$28,965 is what we show on our tax statement for the year for ‘out of pocket’ medical expenses beyond anything covered by medical insurance.

 

Both money and medical insurance alone need their own separate summation posts so the rest of the story over the next several days will be continued …

 

Caregivingly Yours, Patrick leer

CaregivinglyYours.com

Tags: caregiving, care facility

memory problems vs reality can cause nothing more than a gruff response

Visiting with Patti Wednesday night took some ‘tracking skills’ <grin>. Each stop lead to another where she had been and I was greeted by,  “Yes, Patti visited for awhile; but you know how she is, she just can’t stay still.”. Finally finding her, Patti claimed to be bored and tired and wanted to go back to her room and bed.

 

While chatting she confessed she was glad I had stopped by tonight because she had "nothing to do but sit in her room and watch TV." Yet the nurse giving Patti her medication reported Patti had been out socializing since dinner almost 2 hrs ago. Yes, Patti’s remark and the nurse’s report are conflicting realities. Asking Patti about the apparent conflict did not go well and was rebuffed by a gruff “So what?”

 

I’ve learned that with memory problems sometimes it is not always helpful to hold up reality. <grin> And it doesn’t really matter now that Patti is in a care facility because she is safe. In homecare that was not always the case. Memory problems can have consequences.

 

The weird thing about memory loss and or short term memory problems, which are a common symptom in MS, when you are the caregiver is that you don’t really know when the problems will kick in especially when they begin as intermittent. Once you start doubting or double checking a new level of caregiving begins, it has to.

 

The above incident was harmless but there were times in homecare where what Patti reported when she was unattended and what really happened was rather scary. Especially where things that were once OK become ‘at risk’ in particular allowing the person with MS access to their medications or medications for others especially children or responsibility in the kitchen.

 

At the suggestion of Patti’s doctor rather than deal in argument and accusation I simply took to taking a daily pill inventory and keeping a log, I invited her to participate. I had something to show Patti in black and white. Her short term memory problems where beginning to manifest intermittently. She just could not remember if she had just done something, even to write it down.

 

Memory and cognitive symptoms progressed rapidly in Patti’s case. That doesn’t mean they will in everyone’s course of MS. However regardless of progression or even disease, all caregivers face the point where short term memory problems can cross the ‘at risk’ line. It’s not “doubting” the person you care about, it’s just good caregiving.

 

I found the more I included Patti in creating ‘fail safes’ the more effective they were. Above I mentioned a daily pill inventory.

 

Some fail safes were physical. We purchased a glass top stove with controls in the back. This was the most inconvenient for Patti in a wheelchair. When her memory problems began she would start something on our previous stove and forget about it, once even starting a fire. The new glass top confused her and controls where inaccessible – all in all this discouraged her use. That is what WE wanted.

 

Ending her scooter days was difficult. It had to end as she would get lost within just a few blocks after leaving home and forget where she was going or how to get home. Her scooter was empowerment and freedom. Not all memory related transitions will be easy no matter how logical or 'proven'.

 

Rather than ramble on, it’s just nice in this transition year to know that Patti is safe and that her memory problems vs reality can cause nothing more than a gruff response. <grin>

THE BELL CURVE

From THE NEW YORKER magazine, March 8, 2005:

 

THE BELL CURVE

by Atul Gawande

 

     What happens when patients find out how good their doctors really are? …

“how boring my life would be without you in it.”

Visiting with Patti Sunday evening she was in good spirits and good shape. She was a different as night from day as she was from Friday night. Swings in intensity of MS symptoms can drive you nuts. 

 

We wanted to carve out some family time together and keep Patti if not involved at least aware of our daughter’s activities.

 

In addition to Friday’s drama festival, Megan had been competing in Odyssey of the Mind with her high school team in regional competition on Saturday. (Odyssey of the Mind is an International Competition in creative problem solving for gifted education.) They had taken first place in their division and were headed to the next level, the State Finals Tournament next month.

 

While taking nothing away from Megan, Patti’s unequivocal commitment since the beginning to put Megan first and her MS second unquestionably facilitated a nurturing environment empowering our daughter to experience her youth. Living with MS in a family does not always play out with such results.

 

Plus “living with MS” in our family has taught Megan ‘creative problem solving’ since her earliest memories. 

 

Patti was thrilled to hear about the weekend and in a touching remark shared with Megan “how boring my life would be without you in it.”

best-laid schemes o' mice an 'men

The Scottish poet, Robert Burns once penned, “The best-laid schemes o' mice an 'men Gang aft agley.”  Throw MS into the mix and it’s almost a guarantee.

 

Friday I even tried to stack the deck in our favor by bringing Patti home in the early afternoon for a long afternoon nap. Our daughter was performing that evening with her high school drama group.  We wanted to try to include Patti but she would need to stay up long past her desired early bed time if she wanted to attend. The extra rest in theory should provide an edge.

 

Instead following her nap Patti just fell apart physically loosing all strength in her legs and was unable to assist with any transfer from bed to wheelchair or shower or car or whatever. 

 

Patti and I struggled for too long and I only managed to hurt my own back. At the 11th hour I had to abort the plan. I did manage to change her, clean her up, start to launder her bed linen, clothes, and wrestle her into the car and back to the care facility. There in the land of lifts and multiple staff such a problem IS NOT a problem.

 

It's hard to read Patti. More than just physically weakened she seemed mentally and emotionally detached. That we even had been trying to attend Megan’s event didn’t seem to connect. She just wanted to watch some TV and go to bed.

 

Though late for the show, fate got me there in time to catch Megan’s scenes. The high school drama group put on a smorgasbord of live theatre versus a single play. It was an interesting and creative evening with a collage of scenes and acts from a variety of plays ranging from Shakespeare to modern theatre. Megan performed as Gwendolen in an act from Oscar Wilde’s “The Importance of Being Earnest”.

 

At the end of the evening I did check back with Patti’s nurses station and they informed me that shortly after Patti returned they got her into bed using the Hoyer sling lift and she had been sleeping soundly ever since.

 

In the transitional time it is easy to forget how physically demanding and difficult daily home caregiving was, and how unpredictable MS is. It is easy to become lulled into a more traditional pace of life and activities. When trying to include Patti in activities I find it increasingly challenging. I can’t really be sure if the problem is she is progressing or my caregiver skills are rusty, or both. … Or simply ““The best-laid schemes o' mice an 'men Gang aft agley.”

March roars in like a snow lion

Fresh snowfall on top of Thursday's storm is beginning to salvage Winter . 

Top man on our Seminole totem pole is wearing the latest winter trends in totem fashions. 

why shovel

In the transition year I sometimes find myself doing something and suddenly wondering, “Why?” In this case, why am I out here in the middle of the snow storm shoveling?

As a home caregiver for some one unable to walk you MUST KEEP access between your home and the street clear at all times for the unexpected or emergency. Regardless of whether it was the scooter or wheelchair eras I had to keep the walks, ramps, and driveway clear. I would fight a snow storm much like road crews fight to keep the roads clear.

Because of our abnormally mild winter I have not even used a snow shovel until the past few days. I had not even made a snow angel yet and I had this epiphany that Megan and I could just 'walk' through the snow. I did not have to “maintain” access for a wheelchair to and from our house.

Snow, believe it or not, is another area that is different in the transition year between home caregiving and the care facility era.

Short Story Writing

Sunday Megan received a Scholastic Writing Award for Short Story Writing part of a nationwide project of the Alliance for Young Artists and Writers Inc. hosted by Harrisburg’s newspaper, The Patriot News. 

 

We wanted to include and involve Patti. Patti also wanted to be a part of the day. All in all the day went as well as it could. Patti could share the moment, experience pride, and be a part of the cycle of parenting.

 

Crowds of 'standing' people talking about things she becomes increasingly confused about and of course increasingly cannot remember because the entire event is in failing short term memory takes its toll on Patti. An episode of lability necessitated we wrap up Patti’s involvement and adjourn to the quieter environment of home.

 

Away from crowds the 'grump attack' subsided and the day ended with some quality family time.

 

Parenting has been fundamental to living with MS and significantly affected by the transition to the care facility era. It’s difficult to “know” how any 16 year old feels, much less one which has had our daughter’s experiences. It’s more than difficult to “know” how Patti feels.

It is however not difficult for me to see and “know” that both have faced changes in the past year to a most peculiar mother / daughter relationship because of the rapid progression of Patti’s MS. Megan was 18 months old when Patti had her first and most severe exacerbation that left her so disabled that she could no longer safely hold her daughter. That was intense. Yet, living with MS is about finding a way.

Slipping and sliding

Parenting has always been a primary goal in living with MS. Patti was aware ever increasing MS progression and demands on my time from 24/7 caregiving were also increasingly conflicting with the parenting side of the equation. Even with her cognitive abilities fading Patti knew this could be another benefit of transition to the care facility era.

 

Honoring that spirit Megan and I headed out in the peak of the snow storm for “snow driving” lessons.

 

This was made all the more poignant and urgent as just the week before a fatal accident involving local teenage drivers occurred only blocks from here following only a dusting of snow.

 

Megan slid and skidded and did spins - most of which were not intentional. Somehow we did not hit anything or anyone. Sitting in the shotgun seat, I do believe I aged. By the end of the lesson she was a much better winter driver. Driving around in a 9” snow storm with snow still falling and before the roads were plowed is something I hope she WILL remember. (I know I will <grin>!)

 

You can’t teach experience. However, you can share knowledge. The next winter driving conditions she faces, at least, will not be the ‘first’.

 

MS prevents Patti from offering such direct help with parenting.  MS memory and mental confusion problems can make her seem detached. I know that is not true. From the beginning Patti has always put her daughter first. By creating time, Patti IS helping with parenting. Both Megan and I are fully aware of that.

Doctor's appointments

Doctor's appointments became a significant difference in the transition to a care facility.

 

As a home caregiver, appointments were dependent on me. 

 

In a care facility a physician makes rounds much like in a hospital.

 

Quantity also changed. In home care Patti would see a physician twice a year, unless needed. In a care facility physician’s rounds are monthly, unless needed. 

 

Neurologist visits remain every 6 months and require me for transportation and attendance. It seemed best to keep her current Neurologist as he specializes in MS. A facility based Neurologist who makes rounds could be available however he has never treated a patient with MS.

 

So do I NEED to be involved any more? ,,,

 

MS related cognitive problems impair Patti from directing her own care. In theory, staff and Patti’s file should be able to substitute. However, the flaw is that overall they are not MS oriented and individually it all depends on who is on duty that morning to act as Patti’s advocate.

 

MS requires a perspective unique to each person.  My reading of that file and my own observations are 'consistent' with Patti's medical history.

 

If Patti were able to direct her own care this could be a different story.

 

I DO NOT try to keep up monthly, quarterly at best, unless needed. Transition has brought many logistical changes in his area beneficial to both of us.

 

A caregiver is an invaluable resource, a complete patient history. Most importantly to me, the role of ADVOCATE should not be subordinated no matter how many medical resources surround a person.

Caregiving devours time ...

Spending a day doing some Spring Cleaning (I have given up on Winter); I was reminded that Caregiving is more often than not about the extra homemaking. Housecleaning, laundry, yard and garden, shopping, cooking, household maintenance & repair, vehicle maintenance & repair, paperwork, driving, and so much more – you progressively gain the other person’s share and past roles. You may have to ‘learn’ new skills <grin>, at the least you will loose significant “me” time.

 

Caregiving devours your time much like in an old movie when the characters start stripping the train to feed the engine.

Sunday outing and snow

With Patti’s recent peak in memory and cognition skills we rolled the dice and let her choose her own movie on Sunday. Reading her the options she chose "Constantine" starring Keanu Reeves as a kind of supernatural detective. Patti not only enjoyed herself, she never lost interest. I probably would not have chosen that for her so it was fortunate to include her in planning.

 

MS is however a never ending struggle across many functions. Positives in one area such as recent memory and cognition can lull you into being bushwhacked by problems in other areas with Patti’s level of disability. Fortunately the outing included a stop by her parent’s home which has an accessible shower. Experience has taught me to always be prepared. I always carry a backpack with a change of clothes, Depends, etc. A bowel accident in transit necessitated a shower and change of Depends and clothes.

 

A caregiver’s physical strength and accessible facilities are obvious factors in this simple situation involved in a Sunday outing. Not every friend or family member has the physical strength or is comfortable enough to change and shower Patti. Nor does every one build their plans around proximity to an accessible facility. It is these realities that shrink Patti’s world to the necessity of a care facility.

 

Days like today MS seems cruel when rare positives are matched by one of the more disruptive of symptoms. It fuels the “madness in my soul” that fights this fight.

The GATES

Friday, Megan and I drove over to Central Park to check out “The Gates”. I humbly submit my attached photos to tell the tale, or as described by AOL cityguide

                   Central Park Unfurled

For 16 days in February, Central Park becomes a public art project, as Christo and Jean-Claude's 'The Gates' takes over 23 miles of pathways. Free and open to the public, it's the largest work of art in New York City history.

 

In route home, we visited my cousin and family in Pequannock, NJ for dinner and family time  It’s always nice to touch ‘roots’ no matter how many miles you travel and no matter how much you experience.

 

It was an interesting and stimulating day!

Band of Hope

Lance Armstrong rode “Cause Bracelets” to the top of pop culture and recently in our area NMSS has introduced MS’s own red silicone HOPE wristband in association with Giant Food Pharmacies. I stopped by Thursday evening to visit with Patti and bring her a “MS Band of HOPE” bracelet. Actually a perfect bracelet for Patti because she enjoys wearing jewelry of any type, it can’t snag on anything, can’t break, can be worn all the time, and if lost that’s OK at $1 each I bought a bunch. <grin>  It’s hard to see in the picture but the bracelet on my wrist is emblazoned with the word HOPE and Multiple Sclerosis.

 

It also seemed appropriate since only the day before she had recalled and shared an experience in detail from short term memory without any prompting. Such recall was improbable based on her history of symptoms. An isolated incident? Only time will answer that.

 

Back to the topic of caregiving, this is an interesting article from Caregiver’s Home Companion: (click on title for full article)

Far Too Often, Caregiver Spouses Simply ‘Lose It’

“For some, yelling at a spouse is nothing new in the marriage. In fact, it could be a productive form of communication. However, when the caregiver is the spouse, he or she is more likely to scream at the patient than not. Frustration and anger, in turn, can lead quickly to emotional abuse. …”

Towel bars to grab bars

At the risk of sounding like ‘Hints from Heloise’, towels bars make great transitional pieces to grab bars.

 

You can disguise the first appearance of grab bars by replacing your towel bars with grab bars. Repositioning may be necessary and make sure they are secured on studs. The bathroom may not look much different but has taken a big step toward accessible.

 

Do it at your convenience, before necessary. I can testify that as an able bodied caregiver I personally have never met a grab bar I did not also learn to appreciate.

Care Plan Review

Care Reviews are interesting and helpful as I learn to work within a teamwork structure.

Social

Surprisingly I learned that Patti had ebbed away from involvement in social activities but was beginning to return to participation.

Help with Activities of Daily Living

Her ability or interest to participate in ADL or Activities of Daily Living had also measurably declined. ADLs are the different tasks of everyday life such as dressing, eating, bathing; going to the bathroom … As Patti is incontinent with both bladder and bowels those are measured not in terms of her participation but in her interest or awareness to be changed.

The exception was in eating. This exception was in fact phenomenal, as Patti has demonstrated “learned” behavior resolving her problems with choking and swallowing. There wasn't much optimism for restorative eating therapy it had previously been rejected by insurance.

Now how one aspect could be so successful while every other area has slipped is baffling?

However, it is a reason for optimism that the same methodical and patient approach to therapy can now help with the other aspects of ADL. Programs will be implemented to attempt to reverse this decline in her skills.

Toileting

With spasticity under treatment and accompanied by prescription of Ditropan XL a program to assist Patti in transferring to and from a commode 7X daily before and after every meal and before bed and after awakening will begin. This is the most aggressive program ever attempted to control incontinence, and the first attempt in two years. It could ONLY be affected in a care facility with such abundance in staff.

HOPE

The phenomenal success of restorative eating therapy has allowed for some hopeful thinking. Obviously first the slipping ADLs need to be addressed. Down the road there is a more radical theory of “cognitive therapy” that could enable Patti to work around her memory and mental confusion and essentially learn to re-think. Who knows? Living with MS is always about hope. Now learning to live with teamwork, at least there are more options slowly and steadily.

Interestingly an ”EXPERT OPINION PAPER” from the National Multiple Sclerosis Society does support this expanded role of rehabilitation:

“… course cannot be altered by rehabilitation, a growing body of evidence indicates that improvement in mobility, activities of daily living (ADL), quality of life ...”

SPECIAL DATES FOR VALENTINE'S DAY

This is the kind of story Valentine’s Day should be built around. Click on the headline for the full text:

          SPECIAL DATES for Valentine's Day

February 15, 2005 by Kathleen Doughtery for The Patriot-News

“…Sixteen Messiah College students found dates among a different crowd this year.

     Last night, they escorted 16 residents of Messiah Village, an assisted-living and residential facility for older adults, to an evening of dinner and discussion at The Italian Oven in Mechanicsburg….”

A rose is a rose ... or is it?

From the 2002 Census Report on Marriage and Divorce "… 65% of new marriages fail ... marriage rate has fallen nearly 30% since 1970 and the divorce rate has increased about 40% ..." -- Among those living with MS or any disability I imagine subgroup statistics are off the charts.

Somehow Hallmark and the floral industry continue to turn Valentine’s Day into a great American myth. It’s particularly challenging for Patti in that she can’t see more than a few feet in front of her, memory and mental confusion complicate any ‘special’ day, and currently she is hampered by acute sinus and upper respiratory ailments.

Yet challenge is what caregiving is about. <grin> Faced with “can’t see and can’t smell” I was able to find colossal imitation roses, that puzzled even Patti's vision and 'confusion' to the point of curiosity. <grin>

Applebee’s Carside To Go brought ‘dinning out’ to the convenience and comfort of an accessible home environment.  Many restaurants are ‘accessible’ however at Patti’s level of disability that does not always translate to comfort. Crowds and congestion contribute to confusion for her.

Transferring in and out of our vehicle was particularly taxing for her and spasticity was significant which unquestionably contributed to transfer problems in spite of new medications.  

There will always be obstacles. You just have to work through and past them. Overall the evening worked out well.                                    

makes you stop and think

“… the arrogance of the able-bodied is staggering … the power is in the balance, we are our injuries as well as we are our successes …”

 

Even though a work of fiction, I found this passage from “The Poisonwood Bible” by Barbara Kingsolver to be somewhat of a literary slap up side the head that just makes you stop and think.

I could only laugh

Wednesday night I stopped by to try to finish some maintenance on Patti’s wheelchair. As it was almost 8 PM I hoped to find her out of her chair and in bed. Instead she was rolling down the hall grouching a fit at all in hearing range.

 

It seems volunteers had ‘kidnapped’ her for the continuation of “movie night” (apparently they were unable to finish John Wayne’s “Quiet Man” on Monday). Apparently before Patti realized it was the same boring movie she was trapped in the human Rubric's Cube and just wanted to go to bed.

 

I gather she made such a ruckus they had to pause the movie to move everyone around to get the grump out of there. <grin>

 

When it gets to be around 7 PM you do not want to be in between Patti and her bed!!!

                    ---------------------------------------------

As for those foot rests  … even though I had taken one with me to find the correct part, left the other in the back of the closet, and discussed with anyone and everyone who would listen about Patti using her legs  ….  Patti was rolling zigzag down the hall with only one foot on that remaining foot rest and the other foot stomping along while she grumped and grouched at anyone and everyone about wanting to go to bed and complaining about “boring, stupid John Wayne movies.”.  …. It so bordered on the comical I could only laugh.