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!!!

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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.

leg use vs atrophy

For months now Patti has been using the footrests on her wheelchair. We purchased a custom lower height wheel chair nearly a year ago specifically so that she would USE her feet and legs to assist in propelling herself along. Leg use of some type is critical to avoid atrophy.

 

The leg rests are basically only for an outing where Patti needs to be pushed.

 

As I’ve discussed before, one downside to a multiple shift facility is communication. When one shift finds those leg rests on they leave them on assuming there must be a reason, this in turn is followed by the next shift and so on.  Days became weeks which became months and became policy.

 

Tuesday beginning with their in house physical therapist I began back tracking “WHY” are Patti’s leg rests on? She is not using her legs! … Each layer back had no reason except that they found them on. There was NO medical or safety reason.

 

I can only guess that one day in the past someone returned Patti from a push outside and did not remove the leg rests. I myself have fallen into the same cycle of this trap.

 

Some wheelchair maintenance and reviewing for an upcoming Care Plan meeting is what got me going through a mental checklist otherwise this could have just gone on as policy. … MS has impaired the ability of Patti’s legs to walk. However she MUST exercise and use those leg muscles to avoid atrophy.

Tools

A ‘tool kit’ is usually offered as an option when purchasing a wheel chair especially modern lightweights, folding, sports models or any with easily detachable parts.

 

In retrospect that is probably a wise add-on. Operating out of your home you most likely have a variety of tool options lying around. However in a care facility or on an outing a simple adjustment through a potential safety adjustment can get very complicated due to the lack of a tool.

 

Manufacturer tool kits are specific to your wheel chair model needs and compactly packaged for storage and transportation WITH the chair. … Tools in a drawer or closet don’t do you any good <grin>

 

You live and learn and pass along the knowledge.

What MS doesn’t destroy it appears the jackals will try

I stopped by to visit Patti Monday night. Residents were all parked in wheelchairs like a drive-in movie watching John Wayne’s “Quiet Man” in front of the facility’s mega-screen TV for ‘movie night’.

 

As Patti’s vision is one of the worst of all she was parked in the front row. It would have been like playing with a human Rubik's Cube to remove her (or even get near to visit her). Instead I simply stayed and watched her for awhile.

 

Patti was increasingly glancing around particularly down toward the floor. A trait of hers that signals loss of attention. I’ve often asked her what she sees “down there” as she’ll appear to fix her stare on something.  -- “Nothing,” is her usual answer. However there are times this habit of hers can get in my head and I have found myself following her stare and double checking just to make sure nothing is down there. <GRIN>

 

Though only 10 yards away she couldn’t see me. It was peculiar to simply watch Patti and not intervene and not alter her immediate world.

 

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Stunning Reality on Medical Bills

"Half of all  bankruptcies are caused by soaring medical bills and most people sent into debt by illness are middle-class workers with health insurance, researchers said last week. We're all only one illness away from bankruptcy ..."

 

I’m still pulling my hair out as the never ending saga of Patti’s medical insurance spins ever out of control. I wish that was as simple to intervene and alter.

 

For 11 years there was NEVER a problem, then in the last 6 months it has become a full time job with over time. I look over and the floor of an entire room is covered with ‘organized’ piles of paper.

 

Claims have been filed, paid, refunded, refiled, repaid, then refunded, and reprocessed all over again so many times – even my piles are starting to loose track. The journal entry about the TOAD AND MEDICARE is more than true.

 

What MS doesn’t destroy it appears the jackals will try.

odds & ends

Some weekend odds & ends …

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As a follow up to journal entry on "friends are extraordinary medicine", this excerpt from an email from Patti’s Mom captures how perplexing MS & Memory problems can be.  “ …We enjoyed our visit with Patti (Thursday) ...she did remember that she visited with her two old school chums BUT she did not tell us that Betty and Rob were up that afternoon (only hours earlier), her memory or lack of memory still baffles me, but I know it is the result of damages caused by MS”

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A thoughtful observation was also posted to an earlier journal entry entitled " unable to connect".  I discussed with Patti how she does seem to sometimes leap over all the in between and just get past or “get over it”. Neurology offers all these ‘too-many syllable words’ to describe why Myelin damage causes emotional short circuiting.  But does she “feel” or get frustrated trying to express how does shefeel?

 

She replied, “What difference does it make? I’m still going to have MS. When you have MS you have to get over it.”  She elaborated how useless it was to think about anything she couldn’t change. With a chuckle she summed up her answer by pointing out that if all else failed then that’s what her Prozac was for.

 

My mouth simply hung open at this lucid reply. Before and after this exchange Patti could not accurately tell you the day of the week, age of her daughter, any of her medications except Prozac <grin>, or where we were going or what we were doing.

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Sometimes over the years it has seemed to me that we on the outside, tend to look more for answers, reasons, and explanations of MS symptoms. Then in crystallizing moments Patti snaps me back toward a more balanced focus that on the ‘inside’ its about survival skills.

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We did grab Patti for some time out on an unseasonably 50+ degree Sunday. Nothing quite like a good, scary movie matinee, “Hide and Seek” (starring Robert De Niro) followed by ice cream at the Dairy Queen and then home for some dinner and Super Bowl. You can almost set your clock to Patti’s bedtime <grin>. Sure enough by start of the second quarter she was ready for bed it was 7:30! (and it was an unusually active afternoon for her with NO nap.)