FIRST FROST

WINTER is my sanity. This morning's FIRST FROST was a welcomed 'omen'. I needed to know Winter is not far away. <grin>

 

Yesterday attempting to follow up on retroactive cancellation of Patti’s health insurance I discovered what could be the beginning of the endless loop of stalling or an act of incredulous coincidence. Or in other words, blah, blah, blah … (nothing has been done) but will be looked into beginning NOW with their apology of course.

 

.... except that over the last two weeks we have received a steady stream of past due medical bills in the thousands of dollars from providers who have had to refund their insurance payments.

 

Tentatively exploring legal options we were told it was a waste of our money and time. Major corporation will endlessly stall and delay. We will fold from medical and legal bills before we ever see a court room. – If misery prefers company, it was explained this is a growing medical legal trend everywhere. Corporations have human resource budgets to balance and stockholders want profit from insurance companies.

 

At this point the “Mad Hatter’s Tea Party” approach is frankly the best – hope there is corporate conscience and that this is a mistake compounded by bureacratic errors. Certainly a foolish and idealistic approach however as bankruptcy or some variation is the only apparent alternative you tend to entertain foolish hopes just a bit longer.  

 

I picked Patti up for dinner and some family time at home Tuesday. We detoured for some quick grocery shopping which Patti totally enjoyed. I forgot its probably been a couple years since she was in a grocery store. She was more like a kid in a candy shop. <grin> It was rather contagious, it’s been a long time since I enjoyed a visit to a grocery store.

 

Attempts to later discuss either insurance problems or physical therapy were short lived and lost to a newly acquired Halloween singing witch.

 

As I’ve referenced before there are days when MS symptoms of mental confusion, memory, and attention span can make you feel like you’re in parallel universe as a caregiver.

physical therapy

Caregiving ‘rules’ certainly do affect the way things are done especially between homecare vs institutional care.

 

Staff cannot compel or force Patti to do things. Patti’s participation must be based on choice.

 

This all seems simple except when you deal with Patti her answers can be driven as much by mental confusion as by choice. Of course, how can you really know?

 

In homecare a different set of rules would apply extending through “just do it!” That would never be acceptable in an institutional environment.

 

As a result one of the obstacles within institutional care ironically can be Patti herself.

 

For example, currently there is a problem with Patti’s participation in physical therapy. When the plan is discussed she wants PT and is interested. Yet later when a PT aide comes to get her, she would rather take a nap <grin>, is not interested,or would rather do something else.

 

Depending on which time of day, which aide, their persistence, their creativity in phrasing the question, their available time to follow up (Patti might respond differently minutes later if asked the same question) and other variables all can affect what might seem so simple from the outside.

 

In ‘living with MS’ and symptoms of mental confusion the traditional cause and effect way of approaching problem solving just does not work.

 

Sometimes I think caregiving talents were determined back in Kindergarten. You either put the round pegs in the round holes or you began a lifetime fascination with trying to fit the square pegs into the round holes.

Accessibility options can benefit all.

That perfect fire in a fireplace with the flick of a switch still seems like magic (especially before the morning’s first cup of coffee <grin>).

 

One of many accessibility modifications when we had this house built. MS prevented Patti from safely dealing with wood and ‘live’ fire. This gas fireplace felt heretical after wood fireplaces and stoves.

 

With this first nippy morning of autumn, now I can’t even imagine anything more convenient and ‘perfect’! Accessibility options can benefit all.

a harvest in Autumn

Autumn felt transcendental in its atmosphere last night. We brought Patti home for dinner on our patio and some family time.

 

When I picked Patti up I could hear her all the way down the hall, laughing in the common area with other residents. Then not long after dinner she turned to me and asked to go back, she felt like she had “abandoned” her friends.

 

With progression 24/7 homecare was increasing isolation and loneliness. Socialization and companionship in a 24/7 care environment were two of many hopes when we began this process

 

                 Believe in yourself, your neighbors, your work,

          your ultimate attainment of more complete happiness.

                              It is only the farmer

                 who faithfully plants seeds in the Spring,

                    who reaps a harvest in Autumn.  

                                                                --B. C. Forbes

COPY, FILE & SAVE

Whether ‘living with MS’ in your family or caregiving in general documentation is sooo critical. It's never too early, or too late, to start taking time to organize, file, and save medical and financial records for yourself or some one else you perceive you may need to help in the future. 

 

The NEED for those papers will usually come under stressful situations. Their accessibility and ease to grasp for others is essential.

 

Remove the clutter, compile when possible, make over view notes, and sort with simplicity in mind! K.I.S.S. (keep it simple, stupid) theory of organization must be followed. <grin> This is an ongoing project. You cannot do it in a day; but begin to commit regular time.

 

A disabling chronic illness or simply age may be accompanied with progressing memory problems or mental confusion. Nearly insignificantly mild at first it can progress. The simple act of organization is good mental exercise.

 

I’ve scanned all vital legal records such as birth certificates, social security cards, marriage license, power of attorney, etc into PC and copied onto CD. (I’m still paranoid and do not store such data on hard drive, just discs or CDs). CDs and discs neatly pack into a small fire proof box while paper originals live in a safety deposit box at the bank

 

You have no idea how many times simply being able to quickly fax out a copy of a document has expedited some process. Stored on a CD, I simply pop into PC and fax it off.

 

Bottom line in all this is that the paper trail must exist. At some point it becomes the ONLY truth. Recall is neither dependable nor ‘legal’. The sooner you start - the simpler you make it - the easier it becomes for everyone - now and in the future.

 

Control the paper NOW and you enable more time for the human aspects of caregiving in the future.

Family Night

Along creeks, central Pennsylvanians watch and wait:

MORE FLOODING?

Rising streams could mean water in homes and streets

Wednesday, September 29, 2004

BY KELLY BOTHUM AND DAN MILLER Of The Patriot-News

... Most of central Pennsylvania received 2 to 4 inches of rain yesterday from Hurricane Jeanne's remnants. A record of 3.2 inches in a day was set at Harrisburg International Airport, Dangelo said ...

 

In spite of Jeanne we picked up Patti and brought her home yesterday for family night with Italian carry out, conversation, cats, and TV.

 

Interestingly her headphone saga was snagged because she claimed to not know where they were. They were right on her bedside table where we left them, <grin> much like her TV which she claims unable to turn on. Visual impairment and confusion necessitate someone having to directly hand her something or activate anything.

 

Retroactive insurance cancellation nightmare remains unresolved.. Patti’s memory problems seemed to basically have erased most of her concerns or any angst over that. – (I wish the looming financial nightmare could be ‘erased’. The next couple of days should be pivotal.)

 

It was family time as best as it can be anymore. I believe you have to try to create it even when it means making a square peg fit into a round hole.

"WEEDS BENEATH MY SOLE"

Caregiving is too often about getting back up. Physically or mentally the person you’re helping can be overwhelmed by their illness. As caregiver you have that plus the bigger picture. It can knock you down.

 

Mowing the lawn yesterday in anticipation of Jeanne dropping a couple inches of rain on the area today I couldn’t help notice a patch of weeds in the field adjacent to our yard. Throughout the summer I’ve made preemptive strikes against them even though they have not invaded my lawn. I’ve mowed them to a nub, and used levels of chemical warfare that would have pleased an Iraqi mad man. Yet they ALWAYS come back.

 

It’s funny how our Hallmark metaphors for resiliency and persistence are always such glorious creatures or natural wonders. Yet the good ol’ WEED may actually be the most appropriate.

 

I humbly enclose this digital bouquet of weeds for all caregivers and others who just keep getting back up again. Not exactly the “wind beneath my wings” but the ever resilient “weeds beneath my sole” <grin>

STRESS is “scheduled”

STRESS is powerful engine in any situation. MS related damage causes Patti to process information differently. Focus and mental confusion are already daily challenges. I can’t help but wonder how this retroactive insurance cancellation STRESS is affecting her.

 

The information went into her cognitive process. She is capable of and does care about her family. She is capable of and can comprehend financial matters. The processing is just not always dependable or competent and the attention may appear intermittent.

 

I wonder if yesterday some of her physical symptoms were not triggered by the STRESS of that turmoil working its way through. The possibility of nearly four years of back medical bills IS hard to put out of your head for even the briefest of moments of family activities.

 

As a caregiver, you prioritize and balance daily activities and responsibilities. STRESS is “scheduled”. <grin> You have no choice.

 

Now with Patti’s MS complicated ability who knows? What if … STRESS becomes a riptide pulling you further away from those you love?

Depending Catholic

Sundays long, long ago were about church. “Living with MS”, as I’ve remarked before, I’ve become a “Depending” Catholic. It “depends” on whether I am speaking to God or not that week. Living with what MS has done to Patti and all around her, I have issues with the ‘omnipotent one’.

Recently discovering A Prairie Home Companion with Garrison Keillor, maybe his fictional Our Lady of Perpetual Responsibility brought back fond memories of long ago. Or perhaps the release to DVD of Mel Gibson’s The Passion of the Christ made me reflective. It just seemed pop culture was sending me omens to cut the ‘omnipotent one’ some slack this Sunday.

Nothing new there today except the Catholic Church still needs more money. After giving that old time religion a chance we moved on to spending some time with Patti.

Patti has recently been wanting some type of portable music player. She has always become tangled up in any kind of headphone type cassette or CD player. We bought her a radio built into a set of headphones. NO WIRES, no additional unit, JUST HEADPHONES. We’ll just have to see how it works out. Spasticity, visual impairment, and mental confusion really prevent her from using the simplest and most convenient portable music devices that most people wouldn’t think twice about using.

We finished the day with a trip to the movies. Choosing a movie that Patti can follow and also that can keep her attention can be difficult. We rolled the dice on “Sky Captain & the World of Tomorrow “. Patti thoroughly enjoyed the film and chuckled throughout at the banter of the characters.

We should have quit while we were ahead, because stopping to eat afterwards Patti suffered one of her obsessive bouts of vomiting following dinner. It remains one of the weirdest and more socially affecting of MS related problems. She can go weeks without a problem, and then out of nowhere …  Of course, “living with MS” you just learn to make sure you always have a bag with you at all times.

Then I come home and respond to emails with an attorney and dig yet deeper into old records over this looming insurance cloud.

Once upon a time

Once upon a time Saturday’s were about college football rivalries. Pre-MS I spent too many years rooting in vain as Patti and I would travel to ‘Happy Valley’ or College Park to watch our alma maters play. Patti’s the Nittany Lion and Penn State graduate. I’m the Terrapin and University of Maryland graduate.

 

Ah! How the winds of football fortune have changed. (today's scores)

MARYLAND - 55  ... DUKE - 21

PENN STATE - 3 ... WISCONSIN - 16

Phone Call

I brought Patti home Friday for lunch and to call her long term disability benefits office. Basically an exercise in futility, they had nothing more than a superficial question or two. Nothing I could not have told them, but they HAD to hear if from her.

I use oversized props and a handset/speaker phone. Patti's spasticity inadvertently causes her to press buttons and disconnect a call if holding a phone.

As the operator explained they fairly address each case in order after they speak with the employee or former employee. Now that benefits office have spoken with Patti they can investigate 'their retroactive cancelation of her medical insurance' and will respond within 72 working hours (they do not work on weekdends), or by Wednesday of next week.

A plea for urgency in consideration of Patti's medical situation was politely dismissed. They will get back to us next week. Thank you for calling and have a good day.

Often I forget when "living with MS" how out of sync we drift from the real world . 

Believing it best to end on a good note, I noticed buried in 'comments' to an earlier entry that Patti had visitors later on Friday: Hi Patrick and All,
     Just wanted you to know that John and I had a pleasant visit with Patti today.  She was in good spirits and recognized my voice half way down the hall.  We went outside and sat on the patio for a while, but Patti and I both minded the heat so we went back in and visited in her room.  I could not find aprons so I will be making some more tomorrow or Monday.  Is there anything else we could do for her?  I think she had a new outfit on; it was a very nice comfortable material.  I almost wanted to wear it myself.  Give her our love till we get up again.       Love to you and yours,  Jean and John

(Jean makes the 'designer aprons' Patti wears for eating and that would make Martha Stewart drool with envy <grin>)

MAZE

Throughout the years in attempting to resolve one problem or another eventually someone on the other end of one of these phone calls will want to talk with Patti. After all it is her life. Sadly MS damage has so affected her brain that any conversation for Patti is much like being in a ‘maze’ for her. Telephone conversations are a journey into the unknown.

 

For several years now I have had no choice but to participate and assist in any call involving Patti. I place her near a speaker phone and help her as I can.

 

Attention span is a major challenge. Being put on ‘hold’, Patti will loose interest and simply roll away unless monitored.  Even during an active conversation she may just suddenly roll away leaving the caller alarmingly engaged in a one sided conversation.

 

Mental confusion is equally challenging both in terms of comprehending the use of the speaker phone and whatever the topic of the call may be. Information that she offers in response is often incorrect. Patti is not able to always follow a conversation across time or understand a question.

 

Patti cares and worries. Those feelings just may not be linked continuously and may resurface hours later in a bout of anxiety. Loss of insurance? Back medical bills for nearly 4 years? These are overpowering concerns and I do wonder how they will kick around in her brain. It’s somewhat cruel she has to go through this. However, I’ve never tried nor wanted to have her declared legally incompetent so there really is no choice. The caller simply cannot see Patti so they do not know. Live we do not have such problems as any one shifts their attention and questions to me. Power of Attorney doesn’t help much in phone calls.

 

Plus I do not know the answers to many questions beyond so many years. Patti handled her own affairs for most of her life and most of her time with MS. Sadly, here again; this information is increasingly eroded and lost with MS damage.

 

On the lighter side, my most favorite 'Patti phone moment’ occurred a couple months ago when dealing with her retirement account. The management firm is a boring straight laced New England brokerage house. They insisted upon reading Patti some page and then asking her if she understood. She of course did not. They insisted on rereading and asked again if she understood.

 

Patti just stared at the phone, and cocked her head most perplexed. A voice begins to come out of the phone, “Hello, Mrs.Leer? Are you there? Did you understand?” …

 

Patti just starts laughing and bursts out, “What the f*** are you talking about?” Then begins laughing hysterically … abruptly stops … leans forward … stares into the phone and says, “And HOW did you get in there?” …. and totally amused begins laughing even louder.

 

(I, in the meantime watching this whole scenario play out, am trying not to fall on the floor laughing!)

 

I can only hope this potential debacle discussed in yesterday's posting ends with a humorous ancedote to share. Whether it does or not life has priorities:  a certain 16 yr old has a high school football game to get to tonight, lawn needs to be mowed, I've got to get to work, and of course MS will go on. Retroactive nightmares just have to wait in line.

Retroactive Hell ??

This morning I was greeted by learning from our health insurance that BOOM ...

 

“…there was a retroactive cancellation date of 1/1/2001 placed on Patti's coverage on 7/27/04 by her group and that all of her claims will be denied and they will be requesting refunds for what they have already paid …”

 

Refunds of 3 years and 9 months of back medical bills??? Catastrophic would be an understatement.

 

MS has affected Patti’s ability to comprehend or handle financial matters for quite awhile. Necessity dumps that all into caregiving.

 

Hours on the phone back tracking this decision have only produced more questions and will require hours if not another day or more of anxiety to get answers. (With the weekend looming, offices ,of course not under any personal anxiety, might take longer.) Of course, no one can figure out how or why. We have never been notified of any problems, concerns, or changes. Just suddenly BOOM!  -- Needless to say in the meantime NO medical insurance.

 

Time on the phone, even more time waiting on the phone, hours of digging through medical records back nearly 4 years, quickly becomes a day. Caregiving is about AVAILABLE TIME whether you have it or not.   

 

Even retroactive nightmares can erupt out of nowhere on a beautiful Fall morning. You try to remain as positive as you can, but it can get suffocating. This IS "living with MS". 

time is only relevant

AVAILABLE TIME is perhaps the most important of caregiver strengths. Even after admittance to a care facility the support time has not really let up, at least not within the first 5 months.

 

Continuing the clothing anecdote, I stopped by last night only to find the newly requested pants unused and buried under extra bed linen on her chair. Hours of my time have gone to what so far has been an exercise in futility but ‘requested’ by her care facility. The wheels of institutional bureaucracy and individual caregiving turn at much different speeds.

 

Patti, on the other hand, was happily watching "My Fair Lady" on the mega screen TV with other residents for 'movie night'.

When a person can no longer care for himself or herself time is only relevant to those who can offer it.

Caregiving Formula ?

Physical strength and size of the caregiver in relationship to the weight/size and level of disability is a significant factor.

 

Tuesday the care facility asked me if I could buy some oversized clothing for Patti. They explained oversized clothing is easier to switch someone in and out of, especially pants when incontinence necessitates frequent changing. Because it was not a problem for me, I never gave it much thought how much a problem it could be for others. The institutional alternative would be ‘hospital gown’ type attire which anyone would want to avoid. There are after all fashion minimums <grin>

 

I had picked Patti up for an afternoon/evening at home anyway and dinner on our patio. While Megan played caregiver, I ran out and picked up a couple larger sized stretch waist pants. It was the kind of magnificent Fall day where nothing could be a problem.

 

In any situation what the caregiver is capable of and what the person needing care needs is basically a formula that will yield a different result for every person’s unique situation. I fell into a trap of tunnel vision. Fortunately, where there is communication there is usually solutions.

Hepatitis B Vaccine

               Hepatitis B Vaccine May Be Linked to MS

     Findings of Threefold Increased Risk Contradict Most Previous Research

 

Sept. 13, 2004 --The hepatitis B vaccine series has been administered to more than 20 million people in the US and more than 500 million people in the world …

     Now a new study in the Sept. 14 issue of the journal Neurology offers some of the strongest evidence supporting the link. 

     In the study, researchers report that vaccination with the recombinant hepatitis B vaccine is associated with a threefold increased risk of multiple sclerosis ...

full story available at: http://aolsvc.health.webmd.aol.com/content/article/94/102604

The oak tree and the cypress

On AOL Journal Main Page, from what I can gather, regular journal types participate in exercises such as: “Weekend Assignment #24: Tell us what the first song was at your wedding reception and why you chose that song.”

 

Aspects of our wedding and reception were affected by MS though unknown to most guests. Patti was diagnosed as 'probable MS but in early remitting remissive stages and unless she went out of her way to publicize she had MS, you would not be aware. However, we KNEW and the unknown entwined the traditional.

 

Our vows, for example, DID NOT include “to have and to hold, in sickness and in health, till death do us part …”

 

“UP WHERE WE BELONG” was chosen as a first dance because the opening lines seemed to fit. “Who knows what tomorrow brings. In a world, few hearts survive.”

 

Pragmatism more than romanticism themed our ceremony. <grin>

 

             “Let there be spaces in your togetherness

             Let the winds of the heavens dance between you.

 

                  Stand together yet not too near together.

                           The oak tree and the cypress

                       Grow not in each other's shadow." 

                                                    Kahlil Gibran

 

Ahhh, poets! They love to talk the talk (and we all use their words in the 'moments of our lives', as we did 19 years ago). Yet, I wonder how many could walk the walk?

BIRTHDAY

Yesterday was Patti’s birthday. Cake, ice cream, presents, and family tied together the celebration held in a Florida room off one of the lounges at the care facility.

 

As for any additional comments, I yield the floor to Robert Frost:  “A diplomat is a man who always remembers a woman's birthday but never remembers her age. “

BINGO WITH IVAN

My weekend schedule was among many things affected while IVAN was still wrecking mayhem even in South Central Pennsylvania. Ignoring tornado and flood warnings, I figured why not check out Friday night ‘bingo’ at the nursing home?

 

Exciting it was not <grin>. Nor did I bring Patti any luck.

 

In boredom I did have time to reflect that while this evening did seem relatively depressing we were however dry and alive as the remnants of IVAN huffed and puffed outside.

 

How many have died in paradise in the last few weeks? How many have lost everything?  How many lives and families have been changed forever by hurricanes?

 

It is always easier to know why “MS sucks”. Discovering what we have to be grateful may be a challenge, but it does exists.

CARE PLAN REVIEW

Wednesday was a CARE PLAN REVIEW meeting at Patti’s facility. Every other month they have a sit down with department representatives and family to review a resident’s care plan. Time is at a premium and 15 minute appointments leave only the briefest of discussions. You can follow up any topic at a separate meeting with specific staff.

As a spouse/caregiver at home I managed EVERY detail alone by necessity. Transition to the nursing home era has been about learning to cooperate with three shifts of staff (6 - 7 per Patti's unit) plus supervisors and department heads.

EATS ONLY 50% OF HER MEALS however she has maintained herweight. Apparently she rarely misses the snack cart, <grin> though they do not track that outside of ‘observation’. … At a previous review I had raised the possibility that Patti may not see all of her food as configured on her tray. Since then, they have monitored her meals to make certain she is aware of her food. She reportedly claims she is ‘just not hungry’.

HOYER SLING LIFT/PHYSICAL THERAPY...Increasing use of Hoyer Sling Lift for transfer was discussed. Besides probable progression in loss of physical strength it was agreed to reevaluate Patti for physical therapy. It COULD be she is additionally tucking her legs under when attempting to transfer complicating the scenario. Physical therapy may or may not improve this situation. At least itwill be evaluated. ("Benefits of Physical Therapy & MS" MSAA Motivator)

IMMUNE SYSTEM DISEASES CAN COMPLICATE the simplest problems. A frustrating rash has resisted an arsenal of medications and is currently somewhat responding to Lamisil.

SYMTPOMS OF SPASTICITY...Recent advent of symptoms of spasticity is being treated with a program of structured increasing dosages of Zanaflex. (Patti unlike many with MS never had symptoms of spasticity until last few months.)

incontinence of Bladder and bowelS is 100% and all changing is done in a bed. After some discussion they agreed to evaluate Patti for an experimental program of toileting they are beginning for some residents. At home we tried a commitment to toileting at least once a day. This concept is endorsed in some related publications though for caregivers physically demanding and time consuming as Patti must be assisted and monitored. Previously all available pharmaceutical treatments have been tried and failed. At home a catheter was tried unsuccessfully; with Patti’s mental confusion she risked rupturing herself pulling it out one night among other problems. NMSS has a fair overview of Living with MS Bowel & Bladder Problems on line.

SOCIALLY AND PSYCHOLOGICALLY Patti was considered doing extremely well by her review. I would agree. It is difficult to understand what Patti genuinely feels, thinks, or is cognizant of at times; however she seems generally happy. (‘spoiled’ might even be more appropriate some times.) 

MS AND SLEEP ...Patti likes to be in bed by 7:30 – 8 PM at night. Sleeps in until 9 - 10 AM Then naps soundly after lunch for a couple hours every afternoon. Usually is up around 3 PM until the evening cycle begins again. She sleeps over 2/3 of every 24 hrs, and is rarely up more than a block of 4 hours without asking to nap. Basically it is the exact opposite of the archetypal able-bodied person. ... Or in other words, Patti sleeps like a cat! <grin

SHOE SHOPPING

How Patti wears out shoes when she does not walk has baffled me for years?  However, it was time for a shoe quest!

 

I have never known anyone, male or female, who can get in and out of a shoe store faster than our daughter can. NO ONE can make up his or her mind faster and then begin making up everyone else’s.

 

Megan breezed Patti through the process and still had time to manipulate us into a pair of boots for her.

 

The evening began as one of those nights I like to bring Patti home for a visit and feed her nice unhealthy but FUN food that she tells me they do not serve at the care facility. For example tonight was Pizza Hut carry out pizza and soda.   …  Yet after returning her to her room at the nurses’ station they told me pizza was on the menu for tomorrow night. They serve pizza a couple times a month.

 

Between pizza and boots, it was my nightto be manipulated! Could I interest anyone in a conspiracy theory?

 

On the 'dark side' of yin-yang, Patti's physical strength and stamina was in one of those flare lows today and staff needed to use the sling to transfer her in and out of chair and bed. And yes her visit home was somewhat marred by a bowel accident, however fortunately it WAS at home and I have the physical strength to handle her and we have the custom built bathroom to deal with such problems.

 

"Living with MS" at Patti's level of progression is just always going to be a function of balance between positives and negatives. To be involved you just have to accept that.

CARDS & LETTERS PART III

Some of the cards I realize are getting a bit ‘retro’. <grin> NEW cards should be coming … as this Saturday is Patti’s BIRTHDAY. (Hint, hint for those who may have forgotten.)

MS and progression has always been somewhat like that proverbial ripple in a pond. Progression even influences gifts in that you have to consider what can Patti appreciate? Enjoy? See? Understand?

Anything requiring assistance (which is most items) used to be problematic. Now living in 24/7 care, an entirely different set of variables exist.

SATURDAY NIGHTS JUST AIN’T WHAT THEY USED TO BE!

 

On the flip side of 9/11 reflections is the gratitude for what we do have. 9/11/04 Patti is first and foremost 'safe' with 24 hour a day attended care.

 

Between work and travel I have not had many immediate windows of opportunity to visit. Last night (Saturday) I was able to drop by. 

 

Patti was already in bed at 7:30 PM on a Saturday evening. Now to Patti that is a GOOD THING. MS fatigue can make her rather cranky otherwise.

 

I had some Fall door decorations to drop off. We were always MAJOR Halloween decorators at home, often beginning in early September. It only seemed fair to have Patti’s room get a jump on any other resident’s. 

 

Plus a staff member from the facility had called earlier and left a message with our daughter that Patti needed "Depends". Odd in that they do provide a generic. When I called to follow up, no one could understand why such a call or request would have been made??

 

Institutional care, I'm learning, can have it's "black hole" moments. (as can homecare) At least with sooo many people involved, it tends to err in over care.

 

Patti was amused and even briefly recalled the earlier years when our house was known in the neighborhood as the “Halloween House”! Then she only wanted to go to sleep.

 

Saturday nights just ain’t what they used to be! <grin>

9/11

Just about this time of day, the world changed forever. I’m sure it is etched in all our memories.

 

I had just dropped my daughter at middle school and was standing in line at the post office when reports that a plane hit the World Trade Center rumored through the line.

 

Shortly I was back home on caregiver duty. News of the second plane crash lured my attention to Patti's TV watching.  

 

The surreal nature of what was going on maybe gave me a rare sense of the mental confusion Patti lives with.

 

Our world was upside down yet there I was standing in it gawking through a television.

 

At the time living only a dozen miles from the Pentagon, the third plane crash into the Pentagon snapped us into thinking about the immediate.

 

The memory of all memories is the sonic boom that shortly shook our home and neighborhood as the fighters scrambled into the skies from Andrews AFB. The emotional rollercoaster of images of death and destruction on TV and then the safety, rage, and pride of seeing screaming eagles in the sky can never be forgotten.

 

The heroism in the skies over Pennsylvania, the streets of New York City, and Arlington, Va as a nation of people began to fight back WILL NEVER BE FORGOTTEN!

BALANCE

SUPPORT GROUPS is a question that pops up frequently.

 

Patti’s chronic progressive type MS was sooo different from any one else’s MS that was participating in any support groups in our area.  Additionally, I had to transport her and that required a commitment of time at the expense of something else.

 

Caregiver support groups were fewer and mirrored the uniqueness of chronic progressive MS. The Internet as an alternative enabled me to learn I was not alone, which was a fantastic feeling.

 

PLUS I had the responsibility to raise our daughter. The priorities of time were committed to her. From the time Megan was 18 months, Patti could not safely and dependably participate.  Her heart was willing but her body didn’t always work.

 

I found myself balancing Patti’s decline and raising Megan. That BALANCE became my “support group”. 

 

Balance, exchange of opposites, contentment with one’s present state of being, it’s all about ‘support’ being in the world around you. Yin-Yang found me I didn’t go looking for a philosophy. Call it Stoicism if one is into Western thinking, Taoism if Eastern ideas is more your thing. Christianity offers that God doesn’t challenge without providing the means to meet the challenges. They all really say the same thing.

 

MS is unique for every person and therefore every caregiver. Support groups were not a real option for us. Balance BECAME the support.

Cards & Letters Part II

Patti’s strength is returning from the “flare” over the weekend that necessitated temporary use of a transfer sling. She is somewhat able to assist in her own transfers again.

 

Between return to a full week of school for Megan and return to an increasing work schedule for me visiting time has been challenged this week.

 

In the past it would have been "attended" home caregiving time that would have been seriously challenged. Now Patti is safe, in the past she would have been 'at risk' in our absence. Transition still feels out of sync no matter how much sense it makes.  

Cards & letters part 1

Besides “live” visits from family and friends Patti does get a sizable mail bag. She, of course, cannot see to read them; however staff and volunteers are glad to help her, as are visitors. BIGGER are better <grin>. Frequently Patti will try to look at oversized cards if it is a better day for vision.

 

This “journal” has expanded our world in directions never anticipated. Many old friends and family (and new visitors and friends we have never met) are distant and cannot actively participate in the daily, “dimensional” life. These cards and letters ‘now available’ <grin> in cyberspace may help to bridge between the two for everyone.

 

While capturing and loading these cards and letters with the digital camera was easy I understand they may not ‘load’ easy for readers depending on speed and such of your PC. Arbitrarily I’ll use a baker’s dozen and periodically load them up.

a day in the life

Just a glimpse at a “day in the life” from recent page in visitor’s in room journal. Patti’s memory is of little help so much like facility staff we use journals such as this 'on line' or 'in room' for family and friends to communicate to each other.

 

Such communication helps us all since Patti cannot remember what she may have eaten, when she ate, what she did, where she went, who visited, etc.

 

MS is a thief! Friends and family (as I have mentioned before) have to think and work outside the box to keep involved and up to date.

 

Pictures of daily activity calendar pages gives you a glimpse of what the facility offers in lieu of visits from family and friends.

Labor Day

It was a family filled Labor Day today for Patti. Megan and I picked her up around Noon and returned her around  9 PM after a day spent visiting with her parents, brothers, and their families.

 

Sadly it was marred with a bowel accident. Patti’s strength (even after a nap)  is in such a weak lull that she was unable to transfer, fell, and required four of us to complete getting her off the floor, showered, and dressed.

 

It was also some what disconcerting to discover a ‘transfer sling’ now part of her wardrobe. Though I certainly can understand it after our struggles today it is a new level of progression. I say ‘part of her wardrobe’ in that they leave it on the seat of her chair and she sleeps on it. Staff simply attaches sling to lift and can move Patti mechanically in and out of chair or bed.

 

More than ever I am grateful she is safely where she can have the professional help and equipment.

Visitors

(from Patti’s Mom)

[Friday] … I put a package of Depends in Patti's closet this evening, she was running low.  We had a nice close game of Trivial Pursuit and then left to go home at 7:30.

(from her life long friend, Sharon)

Hi, Patrick, does Patti have any plans or anyone else visiting on Saturday?  If not, I'd like to visit and bring her either lunch or dinner, paint her nails, etc. 

never have too much Dairy Queen

Megan and I stopped by Thursday evening with a Dairy Queen milk shake to visit Patti. We keep a big wall calendar in her room for guests to write on and discovered her Aunt and Cousin had taken her out earlier in the afternoon to Dairy Queen for a banana spilt! Ah well, I guess you can never have too much Dairy Queen. <grin>

I brought home a stack of Patti’s cards of well wishes from friends and family intending to write thank you cards. However why not also share the cards on line? It’s easy with our digital camera. An experiment in crossing between the cyberspace world and the real dimensional world.