Thursday, April 29, 2004
Wednesday, April 28, 2004
Enough rambling through background and onto how. Almost two years ago we moved into a custom built home to accommodate current level of disability and tried to anticipate progression. In addition to physical structure we hoped we would be able to get some extra help with home care moving closer to Patti's original home turf, family and friends.
Gamble for help never materialized and in new environment old standbys had been left behind. Classic case of the grass is always greener and when you are desperate, boy is it always greener.
More accessible environment began to backfire as progression of MS developed more dementia like symptoms and Patti could not be left unattended safely. One level home versus previous two level home really backfired as incontinence became near total for bladder and bowels. Daily accidents nuked the home environment for all especially if occurring during hours of unattended time. Patti was not only unable to help herself but even unable to understand what had happened.
Home assistance or waiver type programs were not applicable because Patti could not direct her own care. Her progressing mental challenges left her unable to even clearly understand where she lived. Intermittently she would even leave the home over night dressed only in pajamas in below zero wind chill winter temperatures. Sadly I had to begin to latch her in her room at night by installing a latch on the outside of her door.
Soon I had to latch her in every time I had to leave her alone. It was ludicrous.
We talked and talked to insure conversations were taking place on some good days. Long term care seemed the only solution for both Patti and me and our daughter.
Daily bowel and bladder accidents and latching Patti in was destroying any concept of family environment. Regular bowel accidents will isolate you from family, friends, and neighbors faster than anything you can possibly do.
Pattis quality of life was non-existent and her personal safety was too often at risk. Falls were increasingly frequent when unattended. Experiments with a catheter failed dangerously as Pattis increasing mental confusion caused her to rip it out for reasons unknown.
We began shopping elder care attorneys for advice.
Through the progressive decline of MS there was the parenting experience as a counter balance. Pattis first major MS exacerbation occurred on Thanksgiving morning when our daughter was 1 year old. Patti woke up and could not walk, nor talk, nor see. From that morning on besides a spouse caregiver, I became a single parent.
Men simply do not get such an opportunity to be the nurturing parent. It has been the challenge and wonder of my life. The growth and positives have been such a source of sanity as a counterbalance to caregiving.
Though Patti improved from that exacerbation she never regained the coordination to safely hold our daughter nor change a diaper nor give a bath. MS robbed her of motherhood and left her watching.
On the other hand without single parenting, I dont know how I would have survived these past 16 years. It is a drink of hope and the future every day.
Of course there are times I could pull out my hair. Opposite sex parenting is particularly challenging and even insightful.
Our daughter has never known her Mom as not disabled so the impact of MS is not one of change as it is for many families living with MS.
Money, money, money makes the world go round. Nowhere is that MORE true than in caregiving. The conventional wisdom of financial planning or just happily living a two income life is turned upside down when MS changes family dynamics like an earthquake.
As the years ticked by we grew to be happy with a goal of zero net loss in a year before that too had to adapt to a controlled depletion of savings.
My own time to earn money became restricted as Pattis dependency increased. Full time obviously had to become part time. Then the juggling act to get some one to watch Patti while I tried to work began to occupy increasing time.
Family, friends, and neighbors can be great for a while. 15 years is not a while. Our culture is somewhat founded in get better or die. Long progressive disease is an enigma.
Insurance, medical support and assistance is skewed against homecare.
Divorce is an option at least for the well spouse. It just wasnt an option I found acceptable for me.
Moral and philosophical issues aside in caregiving I found myself in a black hole sucking in money, assets, and the future. I can certainly understand the well spouses who do walk away, as I can try to understand the disabled spouses who have to add the concern of abandonment.
Some days it is hard to breathe. Yet as the well spouse you have choice. I had to keep looking for something to try.
Tuesday, April 27, 2004
Answering my own previous question is as difficult as letting go. As spousal caregiving expanded over the years I began to think for Patti. At first out of convenience then as her mental abilities were increasingly eroded by MS out of necessity. Every caregiving situation is different. Ours grew to total dependence.
You cease to be, in a sense you suffocate. You become something different. You are your dependent spouses able body and mind for interacting with the world of medical care, insurance, planning and details of living. Yet you are NOT disabled. You cannot feel the emotion. You cannot know the void of loss of memory and reasoning. Too often its like existing simultaneously in parallel universes. Its easy to loose your sense of direction.
As Pattis mental abilities became more inconsistent so to faded the ability to discuss ideas or plans. That was a frightening and lonely point of no return.
"Everyone will one day know or love someone who can no longer take care of themselves." That quote from Maggie Strong's book MAINSTAY has been somewhat of a mantra for the 18 years we've lived with Multiple Sclerosis. Everything we live is simultaneously about just us and now and yet at the same time about someone else at some other time. This new world of journals or blogs or whatever seems worth a try.
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