Tuesday, March 29, 2005

Life has to have unknowns

Home for the holidays and at family gatherings with extended family and friends, caregiver antennae has to be on high. Unlike a care facility the safety net is missing, and Patti is not always what she seems to be.

Playing with the camera over Easter weekend, I captured an interesting sequence. The following pictures are taken only seconds apart. They catch facial expressions related to symptoms of attention span, focus, & awareness fairly well and demonstrate how difficult those symptoms make it for someone to ‘read’ Patti or interact.

Patti was watching TV while I was making lunch. I had asked her, “What are you watching?” The pictures catch her attempting to process the question and answer. She was unable to offer a response. (Remember the answer is on the screen 2 ft away and in panel 3 she even glances in the direction of the screen.)

The sequence ends as often with her moving closer and looking at me as if I just materialized out of thin air. (As a fan of Grade B horror films this used to unnerve me and I would always turn to look behind me. ) 

In some situations she just forgets. In the worst case scenario, frustration boils over into a disruptive outburst of lability. 

Like most MS symptoms this is inconsistent and therein is the problem in itself. Someone having a lucid conversation believing Patti appears ‘fine’ could leave Patti unattended. Unattended at Patti’s level of disability is “at risk”. In the blink of an eye symptoms can change. The Patti that appeared lucid and conversational can instantly become as confused and unaware of her surroundings as when I asked her the simple question,”what are you watching.”  

As a caregiver you don't want to loom over a person and yet you want to encourage interaction. I long ago got tired of people talking to Patti through me like she needed a translator. I find the best I can do is just keep the caregiver antennae on full power. Life has to have unknowns.

puzzle of time

Holidays seem to act like a lightning rod for memories and personal time travel for me. The leap between pre-caregiver and caregiver years somehow makes reminiscing more like working with a jigsaw puzzle than watching an old movie.


I’m sure some psychobabble advocate would have a field day with that image <grin>; however it is the way it is.

Saturday, March 26, 2005

Sometimes a ‘comment’ ...

Sometimes a ‘comment’ can be so insightful it merits promotion to an entry. Sue’s comment touched two critical points of the transition, family help and caregiver health.


Things have really changed since the turn of the century.  Now we don't have the extra maiden aunts, dependent widows, or others in the home to take care of someone.  I understand the issue to go to a nursing facility.  My mother finally took my step-dad to a facility when the doctor said NO MORE; you have to think of your own health as well as his.

Comment from analeighia - 3/22/05 10:35 AM 


Two years ago Patti’s neurologist in the middle of an appointment turned to me and flatly put it, “This is no longer about Patti’s health. The best thing you can do for Patti is to take care of yourself and your responsibilities to her and your daughter.”  


Applying for a LTC (long term care) insurance policy a year ago, I learned that actuarial statistics penalize 24/7 ‘home caregiving’ as an insurance health risk like smoking or obesity.


Changes in the nuclear American family, in general, have certainly had a ripple effect upon home care. Then again maybe ‘the American family’ was only a figment of our culture, something that drifted in a nostalgic blend of literature, TV, and movies until you actually need 24/7 care.


Family, friends, and neighbors are too busy with their OWN lives to depend on for ‘attended 24/7 care’. Help and ‘attended 24/7 care’ are different worlds. Dropping by with a meal for a sick friend is a different world from ‘taking a shift’ of attended 24/7 care.


Progression and caregiving needs will be unique to each person. Cookie cutter formulas would be nice but that’s not going to happen. Just as needs are unique, each caregiver has unique strengths and weaknesses.


With MS the BEST solution is to slow progression early in the disease. Today there are multiple medicines available offering such hope.  Patti had none available to her in the early stages of MS. If you can slow progression, then caregiving needs may be of much less concern later.


P.S. Sue (analeighia) is a home caregiver her spouse has Parkinson's. You can find a link to their journal “A Day In My Life …” to the right or just click here A Day In My Life … Grab yourself a lime and coke and visit. You’ll find courage, wisdom, and love.

Friday, March 18, 2005

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.



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.



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 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.



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


Thursday, March 17, 2005


 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.”


Wednesday, March 16, 2005

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?

Tuesday, March 15, 2005

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


Sunday, March 13, 2005


“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


Saturday, March 12, 2005

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


Friday, March 11, 2005

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


Thursday, March 10, 2005

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>

Tuesday, March 08, 2005


From THE NEW YORKER magazine, March 8, 2005:



by Atul Gawande


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

Monday, March 07, 2005

“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.”

Sunday, March 06, 2005

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.”

Tuesday, March 01, 2005

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.

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