Paperwork, at times, seems to dwarf any other aspect of caregiving, a modern David vs Goliath relationship to get anything accomplished. Bureaucrats outnumber you, work by the hour, and RARELY associate a person to a piece of paper.
… and trees were murdered for this madness? Say it ain’t so! <grin>
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I was web surfin’ and found this site for a “Fearless Caregiving Conference”. … there is obviously money to be made off caregiving. I HOPE for those buying there are answers. Of course, in our consumer driven society this may just be the better way to communicate.
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Our national health care crises ONLY gets attention during Presidential debates, then goes on the back burner. Self preservation makes every one thankful they are OK (for the moment) and then go 'stick their head inthe sand'. ... It wouldn't hurt if we all start paying attention to warning signs:
NASHVILLE, Tenn. (Jan. 10) - Gov. Phil Bredesen announced Monday that he will drop 323,000 adults from the state's expanded Medicaid program to save about $1.7 billion a year, but will preserve health coverage for children. ...__________
"Denial" was mentioned in a comment to a previous entry on memory. Yes, denial of symptoms and progression through acceptance is a stage for ALL involved. ... It is a complicated time
Retrospection has shown me that denial of the consequences of caregiving on my own future became overwhelmed in a duet with caregiving. Home caregiving decisions are career and life changing. MS traditionally strikes in mid life. The American prime income earning years are sacrificed at best for zero income, more likely negative spending. There is an economic price for caregiving and more … Is it balanced or outweighed by intangibles? --- It depends <grin>.
We did get Patti out for a family outing Sunday with a movie, family time, and dinner.
“Phantom Of The Opera” even though on a 30 ft tall screen couldn’t hold Patti’s attention. She had wanted to see the movie and we had seen it ‘live’ years ago, a memory she had recalled with conflicting results over two days. … You notice her increasingly spending more time looking around, mostly down at the floor for some reason, instead of ahead at the screen. … Though she claimed she enjoyed the movie.
Visiting with her folks and dinner rounded out the day. That social environment seemed more comfortable for her as nothing required attention span over a period of time.
Transferring in and out a vehicles continues to become more difficult. This in turn restricts who will even try to take her on outings. I can’t say it is solely a function of strength. Mental confusion is as much a factor if not more. Staff at care facility increasingly uses a Hoyer Lift Sling to transfer Patti because they are having problems transferring her from chair to bed.
Patti’s ability to assist in transferring so far has fluctuated which is not unusual with MS strength and fatigue. However it is a CRITICAL stage, as it is vital to levels of involvement with others.
Memory is spooky to watch malfunction. When memory is not dependable it can quickly become a risk when you must leave some one alone. Memory becomes a safety concern in home care and a question in the transition to 24/7 attended care.
MS Memory in Patti’s case seems to defy a formula. When I believe I see a pattern, it can blur into inconsistency. One day a memory is there and vivid for her the next it’s confused. Short term specifically is atrocious. … But any given day is uniquely unpredictable.
Personally as a caregiver I found Patti’s inconsistent and unpredictable lapses more risky than a steady decline. You ‘want’ to believe the best. You ‘want’ to trust. Others ‘will’ believe and trust … and just when you do let your guard down memory malfunctions …
An incident or lapse can seem so minor, and maybe it is, but memory should not be underestimated.
Here is an interesting story from our local paper of a caregiver / parent that took it all to the next level …
“… At the urgings of friends and family who read her late-night, often frantic e-mails, Todaro compiled a book.
"I wanted for people to know how this changed my marriage, my family, my whole life."
The 190-page book contains letters, e-mails and entries from her journal as Todaro shares her life's struggles and surprises …”
For the full story click on the blue headline.
Caregiving has many perspectives. Starting to fill in the data for tax software and some Medicaid update forms frames the past year in yet a different point of view. ALL the financial factors ram their way to the front. It is an overdose of reflection and a gloomy and frustrating examination.
Patti’s cognitive abilities are too damaged to process or comprehend. As the caregiver the economics of care is a solitary task. … Looking outside, the dense ground fog seemed as if conjured by my mood.
I decided to pop over and visit with Patti. It is easy to loose balance, to forget there is a person behind the disease.
Interestingly I think you do have to forget there is a person behind the caregiver. Until caregiving is over that person IS the caregiver. However the person with the disease IS NOT the disease.
Those last two sentences do sound like you might find them in a healthcare fortune cookie; but there is truth there.
Anyway after sharing my experiences and thoughts with Patti, she asked, “Did you say it was REAL foggy out?” “On nights like that I always liked to pretend I was in London.” … Then of course, there is Patti’s perception. <grin>
With the New Year, and new readers, a moment to recap makes sense.
Patti has a diagnosis of Multiple Sclerosis. -- In fact she’s been tested and retested over the years for other possible explanations, e.g. Lupus. The diagnosis of MS remains.
Patti was diagnosed as “probable MS” in 1986 at the age of 31. The diagnosis became definite with her first major exacerbation on Thanksgiving morning, 1989.
In those early years like most people with, MS Patti’s type of MS or clinical course was 'Relapsing-Remitting' MS. Multiple Sclerosis makes up its own rules and can and will change types and course. Patti has lived most of these years with the rarer 'Primary-Progressive' and the rarest 'Progressive-Relapsing' types of MS.
Patti was already in a wheel chair before the modern medications now available to slow progression of MS were even available. She did try Avonex for over two years when already advanced and during 'Primary-Progressive'stage to no effect.
On the EDSS Disabilities Scale from 1 – 10, Patti’s current average score is 8.25.
Relentless progression, safety, and need for 24/7 attended and custodial care finally overwhelmed home care after 15 years and in March of 2004 Patti was admitted as a full time resident of a care facility/nursing home.
This journal began about 6 weeks later to share our transition for others both interested in Patti and those who may need to travel this path themselves.
Multiple Sclerosis IS confusing. I encourage you to browse through these informational pages of the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. Click on the blue highlighted words or phrases for more detailed information.
“… Is all that we see or seem
But a dream within a dream? …”
Edgar Allan Poe
This line of poetry has both soothed and challenged me through years of caregiving, serving almost like a mantra. So when an opportunity presented itself for a quest to the grave of ol’ Edgar near Baltimore's Inner Harbor, I was off!
In my case caregiving has always been counterbalanced with parenting. My crusade expanded to Megan and a classmate (and students of American Literature).
Soon the day also encompassed the National Aquarium and ended dinning on crab cakes and steamed clams while overlooking the USS Constellation.
Spouse / caregiving and resulting single parenting has meant in our case -- also raising Megan to live and succeed in an able bodied world. It's an interesting duality. This kind of day could not have happened WITH Patti; only with her safely attended and resting.
Trying to keep Patti ‘in touch’ is still important, I believe. Her care facility is of course critical. It represents safety, 24/7 attended care, regular and ongoing therapy, and three shifts of custodial care. Home care as a one person show cannot match that.
Yet home care is about ‘home’ and family and more. 2005 began with an outing to Patti’s parents’ home for traditional good luck pork dinner. A day with hopefully the best of both worlds for Patti.
Visiting at a care facility can have dual agendas. When possible I try to visit at times I’ve learned can be problematic for Patti.
Immediately following dinner is such a time. Patti's Dysphagia can trigger emesis. Or additionally Patti could be feeling nauseous for unrelated reasons, but is unable to properly associate that she should not eat or eat lightly (or forget to even tell staff that she is feeling ill).
In her room alone, she cannot think through how to use the call button. And obviously when wheel chair confined rushing to a commode or even a trash can is not an option. …
Last night's New Year’s Eve visit served just such a dual purpose <grin> I wanted to stop by and wish Patti “Happy New Year’s” early because Patti has not made it to Midnight in years.
Patti and her stomach were not in harmony. Even though staff had done the janitorial work Patti was frustrated, confused, etc. … I changed her into a lighter shirt (I personally believe half the world’s health problems are related to being tooooo warm.) and got her some peppermint hard candy to suck on. Then spent some time talking her into a calmer state. Shortly she was as good as she was going to get… and complaining about wanting MORE peppermint candy to suck on. <GRIN>...A true party animal!
Central Pennsylvania has a history of dropping ‘weird stuff’ for New Year’s Eve, from pickles to bologna. Even “Access Hollywood” headlined the debut of our WRENCH DROP into this unique pocket of Americana.
The town was named for the “mechanics” that worked on the pioneer wagons heading West through the Cumberland Valley. If only those mechanics and pioneer customers could see it now … <GRIN>
Attention span and memory are MS symptoms that can confound interaction with Patti.
Reading holiday cards to Patti though has been some of the more successful moments. Watching her light up with recognition and often have her share a memory is enjoyable.
Cards are colorful and visual. Holding them and seeing whatever she can see seems to enhance the moment for her.
Never underestimate the power of a simple card or note from a friend.
The deck is too often stacked against home care for many benefits to a patient. The 'system' basically does not trust the home caregiver. An institution is trusted because it can be regulated.
Physical therapy is an excellent example. Through years of homecare armed with the best of private insurance and Medicare we could never manage more than a dozen home visit sessions and that was ONLY following hospitalization.
I could only shake my head as I reviewed a recent Medicare Summary Notice “paid in full” for 43 physical therapy sessions between just October 5th and October 31st. I am glad Patti could get the help. However it is soooo frustrating that she was denied the same help at home simply because she was ‘at home.’ Same disease, same diagnosis, same prognosis, same doctors, same insurance, only difference is that she is in a care facility and not at home.
And it is not just “running up the bill”. Over half the sessions involve restorative eating therapy and unquestionably Patti is demonstrating positive results. The remaining sessions involve her adapting to recent progression and learning new ways to help others to help her transfer.
There are many aspects involved in the transition from homecare to a care facility. Increased options to the patient as in this example is a factor that cannot be ignored.
CHRISTMAS EVE
Picking Patti up for Christmas was full of high hopes only to find Patti unaware it was even Christmas Eve or that she was going home for the holidays, such is MS and memory. <grin>
Bowel incontinence torpedoed the evening’s agenda. The associated custodial care involved in clean up, bathing, and laundry was difficult. It’s been 9 months since I did this level of home caregiving 24/7 by myself or have been accustomed to the daily routine.
Patti’s strength has increasingly failed in that time and symptoms of spasticity have not only had their advent but also progressed. Wow! Does that double punch multiply the level of difficulty in handling Patti by oneself. I better understand the increasing use of Hoyer Lifts by care facility staff.
Associated stress and exhaustion yielded to gloom, I doubt visions of sugar plums danced in anyone’s dreams.
Christmas
Patti who NEVER wakes early, of course, was up early. <grin> Patti’s only remaining contribution to self care is some ability left to put on her own socks and shoes. The process of getting her up, bathed, changed, dressed, and laundry of bed linen and soiled bed clothing turns any morning into slow motion.
To balance the family aspects of ‘Christmas morning’ with caregiving is tricky. A late brunch followed by gift opening worked better than expected.
Patti’s parents stopped over in route to a larger family gathering, taking our daughter along to give her the counterbalance of an “able bodied” Christmas.
Patti’s napped the better part of the day. Her brothers and their families were able to visit later. The final guests making it just as Patti was ready for bed. Patti rallied for company and did rather well for the extra time before succumbing to fatigue and ‘abruptness’.
Repeatedly reminding and explaining to Patti the differences between living in a home environment and care facility seemed to help extend her cooperativeness. It took effort on her part and wasn’t easy for her.
Absence of vehicle transfers and consistency of environment stacked the deck in favor of a good day. Patti wanting a good time and trying her best was the rest of the formula of success for a Christmas Day at home. It wasn’t the kind of Christmas that you dream of or sing about, “…just like the one’s I used to know…” . It was an ‘alternative’ Christmas - the best of possible.
On a lighter side, for whatever reason Teazer, our 18 yr old cat, was obsessed with climbing all over and sleeping on top Patti when she napped and slept. Patti thoroughly enjoyed this disruption. <grin>
THE DAY AFTER
Now THIS morning Patti slept in until almost Noon! <grin> Again we moved through the slow motion process of lifting, bathing, changing, dressing, laundry and feeding.
You cannot box yourself into a timetable with homecare. In a care facility with increased staff that is another story because you have so many people available to do simultaneous functions.
We decided to wrap up the time with a movie matinee of “Meet The Fockers”. One of those zany comedies Patti can enjoy and did. Sealing the weekend with a couple hours of laughs.
It also provided somewhat of a ‘regular’ outing ending to an unusual weekend. It seemed such a segue way might make the most sense for all.
EPILOGUE
Asking Patti if she had a good time or enjoyed the visitors or being home? She thought for a moment and responded that she, “enjoyed seeing Megan and the cats!”. <GRIN>
Only 9 months ago Patti could still assist in her own transfers, had no symptoms of spasticity, and could somewhat dress her self with minimal assistance. Now, multiple times daily needing to lift Patti in and out of bed and completely change and dress her are progressed needs and new and physically demanding caregiver functions.
I am not only sore and aching in different muscles but also grateful that we timed the transition to a care facility when we did.
Was it all worth it to have a Christmas at home? I don’t know. <grin> I just know I had to try. And Patti's smile in the last picture says more than words can ever try.