Existence of Open Ended Systems..?

I suppose given the season this piece would seem like a natural extension of the joy and giving so often associated with Christmas but there is actually more to it. Although I had to retire before I really came to understand the value and delight in volunteering I feel very lucky I was finally able to discover what has now become an integral part of my life. So when I read a marvelous piece by another blogger (Athabascan Woman Blog) I follow on WordPress centered on the topic of recognizing just how much we truly have and enjoy the sentiment struck a chord within me. And, in so doing, formed the basis for this piece which is really about the importance of helping others regardless of the time of year.

As I look back upon my life I recognize that as a child I was far too caught up in myself to even consider assisting others although I could be at least charitable to my family and friends. Through my teens and early twenties I was busy looking into myself trying to decipher who I really was and why I did, or didn’t do, so many things. Once I entered the working world my time was slowly but continually eroded by the increasingly more demanding positions as well as my continued need to look within myself. Yet in many ways I remained self-absorbed because I was fixated on trying to start and develop a long term relationship with members of the opposite sex. Sadly this never worked well for me and now that I have the ‘lens of time’ with which to look back upon those decades I understand that my consistent failures were at least as much my fault as my partner’s and probably even more so.

When a shift in marketplace employment needs coupled with my demographics (single, white, 50+ year old male) forced me out of the workplace far sooner than I intended I was left with lots of time to contemplate my past and while some of this was helpful often it devolved into ‘self-flagellation’ sessions with very limited value and generally not at all productive. But this same mix of events also left me time to care for my aging parents and to even become a care-taker for the family’s home while my mother spent her final few years in an assisted living facility. Although I didn’t recognize it at the time Mom was setting the stage for her most wonderful gift to me – the opportunity to experience volunteering. It seemed natural I should volunteer at the facility in which she lived as this gave me a chance to be around her more often; however, it also opened my eyes to the ‘relativistic’ nature of our own perceptions regarding what we have versus what we perceive others enjoy. And herein started my own voyage of discovery regarding the act of volunteering and the motivations behind my need to do so.

Initially I felt the volunteering was something that helped out Mom as well as the staff at the assisted living facility while giving me a chance to work with a variety of younger mainly women. But providing any sort of care to elderly folk, and particularly to elderly dementia victims, requires one be very observant and empathetic. As I increased my volunteering time I began to really get to know many of the residents; with time I stopped seeing them as ‘poor victims’ of a wicked disease and began to recognize them as people with often long and varied histories. Because of the nature of dementia in general and Alzheimer’s in particular one can never really escape the understanding these souls are nearing the end of their lives and doing so trapped by a wicked disease that strips them of their dignity, their memories and eventually their lives. But I also came to recognize most had long and interesting lives which, sadly, were coming to an end under rather unpleasant conditions. Many had been kind and generous people so to be able to offer them even just a modicum of assistance and care in their final years just ‘felt’ right. And the more I could positively impact the better I felt!

In college I remember learning there was no such thing as an ‘open ended system’; that the nature of the Universe was to tend towards disorder and eventual chaos and there were definite limits on energies and dimensions which would not allow for a truly open ended and hence ‘never ending’ system. The classic example of the futility of looking for such systems was man’s quest for the perpetual motion machine. This made sense at the time and I never really had reason to question this premise. Yet 35 years later I was wondering if maybe I hadn’t found an open ended system in volunteering..?!? Without question the more time I spent volunteering the better I felt and the more ‘good’ I seemed to perpetuate. I still marvel that when I volunteer folks are always thanking me for my time and effort when I feel I should be thanking them for the opportunity simply because it makes me feel so wonderful and, indeed, ‘complete’. Regardless of what, or how much, I did I always came away feeling I’d taken in so much more than I’d given out. And this feeling fed my urge to volunteer more time and effort; in effect that mythical open ended system.

With such positive forces driving me on I began to wonder at how this could be and perhaps more importantly ‘why’ this could exist. I believe most human beings are inherently ‘good’ and will always gravitate towards being helpful and caring. Of course there are many exceptions but some can be ruled out simply because they have organic or psychological damage while others are the victims of conditioning be it through upbringing, religions, environments or similar. In reviewing my own situation I needed almost 60 years to finally try volunteering even though I had received lots of encouragement regarding the practice during my earlier years. But what was it that made assisting others feel so very good? It occurred to me that in general I favored assisting others whom I viewed as either needing my assistance or those I felt had so much less than me. This made sense and I certainly felt there were so very many people falling into these categories. I came to recognize I had lived a very full and ‘easy’ life; these revelations almost forced me into wanting to give a little something back to those who I deemed were in need of what assistance and care I could provide.

And the more I did in terms of giving and assisting the more I recognized just how lucky I’d been which in turn drove the urge to help even more. I came to understand that sometimes I could assist by just giving someone a smile or holding a door open or wishing a stranger a good week; this, in turn, showed me it is not the perceived size or value of what one offers as assistance but rather the act of offering it in the first place that really matters. In reviewing what I’ve tried to do for others across the past eight or so years I’ve come to understand the more I offer the more I realize I have to offer. Another example of an open ended system in action! But I also noticed the more I give the more I have to give and this is rooted in a shift of one’s perceptions regarding themselves. I’ve become a so much more positive person thanks to my volunteering and as I’ve become so I learned what I believe is possibly one of the five most important concepts we humans can embrace: ‘attitude is everything’! Nurturing and developing a positive outlook on life can and does affect all aspects of our lives and does so in a most decisive and unequivocal manner. I still marvel at the power and far reaching consequences of truly accepting the immutability of such an apparently simple phrase!

So as I sit here in my semi-rural Alaskan home office living a lifestyle still new but also very dear to my heart in a place I’d only dreamt of living a few years previously I truly understand just how lucky I have been and how much I now have to share. Volunteering is a great means to ‘pay it forward’ and I’ve had wonderful opportunities at Talkeetna’s KTNA and at the Upper Susitna Food Pantry. Without question I hope to indulge myself in even more such opportunities and I’d be lying if I didn’t admit much of my motivation stems from the peace, pleasure and serenity I reap from such actions. At this point I no longer question the how or why of such situations; I just ‘go with the flow’ and reap the benefits knowing in my own small way I can make a positive difference in other people’s lives.

The Stealth Pandemic: It’s Already Too Late

This posting will be a definite departure from my usual genre of relating my experiences and learnings regarding living in rural south central Alaska. With this said it may well be the single most important piece I’ve written in this blog; as such I hope it can at least assist others about to experience this situation if not offer some hope to those same folks as well as any who are currently making this difficult journey.

My impetus for this piece came from talking with a dear friend late last week who is just now beginning this arduous journey and hearing of his frightening albeit limited choices. The ‘stealth pandemic’ I speak of is something that is already well entrenched in our society and is also becoming more and more prevalent throughout the world. To this point there is no cure for its ravages and it has but one outcome: a degrading death for its victims while it destroys families and friends. I’m speaking of the dementia pandemic in general and of the vicious Alzheimer’s in particular.

Up until recently most folks knew of Alzheimer’s through humor; I, too, shared many of these jokes via email and word of mouth. But when my own mother began to show the signs of Alzheimer’s I quickly learned there is NOTHING funny about the disease! As the only family member proximate to my mother I experienced the grief, the frustration, the despair and the futility of this wicked disease first hand as I watched my once strong and intelligent mother devolve into a mindless stranger incapable of communicating and caring for her most basic needs. During Mom’s struggles and after she passed I volunteered at an assisted living facility which had a special section for the ‘memory impaired’; I worked within that section almost exclusively for over three years. I watched countless victims enter this facility in relatively good condition but then inevitably begin to succumb to the ravages of the disease; none of them ever left the facility alive because no one recovers from Alzheimer’s. During this time I not only witnessed the disintegration of so many wonderful people; I watched the disease’s effects tear apart families and decimate friendships. Indeed, I’ve observed many times that Alzheimer’s might well be the only disease that is at least as hard if not harder on family and friends than the victim.

Up front let me say that if you have not experienced the journey one embarks upon when dealing with a family member or close friend in the grip of this wretched disease then you cannot understand what is involved or the nature of the stress and pain that one will endure. This includes all health providers; in fact doctors are some of the absolute worst resources in this situation! They may understand Alzheimer’s from an intellectual standpoint but they do not grasp the emotional and spiritual effects; no one can until they’ve experienced it. I sincerely hope all reading this will never know this experience as it’s one that forever changes everyone who lives through it and in so doing it does scar one’s very essence.

Care-givers who deal with Alzheimer’s speak of starting a journey when dealing with a friend or family member diagnosed with Alzheimer’s. This is really quite accurate; anyone in such a situation walks a path that has many commonalities with those others have walked yet no two are exactly the same. But without question anyone experiencing this journey will not finish it the same as when they started and for many of us the journey has never ended.

As mentioned I talked with a very dear friend late last week and learned of his untenable situation; I’ve chosen to relate this as a very clear warning to everyone reading this blog. His mother in law has been showing signs of Alzheimer’s for maybe a year now; based on what he shared I’d guess she’s in stage three or possibly early stage four of the current six stages of the disease. She is a stubborn single woman living in her home and she refuses to move out although she is clearly a danger to herself and others. The family has tried for years to encourage her to move into some form of assisted living but she refuses. The family was also unable to get her to sign any legal forms detailing her DPOA (Durable Power of Attorney) or MPOA (Medical Power of Attorney) so she remains in ‘control’ of her life and assets. She has slowly albeit steadily declined over the past six months and is now regularly hallucinating, is subject to fits of extreme anger and often cannot recognize family or friends. Only recently were they able to get her to visit doctors and just recently she’s been seeing a gerontologist. She regularly calls the police to report strangers in her house; this has happened so often the police now know of her and handle her calls accordingly. In short she should not be living by herself and should be in a very controlled and quiet situation. But the family is incapable of making this happen.

Why, you ask..? Because in this situation even though the gerontologist recognizes this woman is struggling with Alzheimer’s he will not sign the lack of competency forms the family’s lawyer has carefully prepared – he has seen the woman and is in complete agreement she is no longer competent to handle her own affairs – for some unknown reason. His ‘solution’ is to have the woman move in with the family such that they can provide care!! Even as I type this I remain aghast at this recommendation; it is probably the worst answer to the situation bar allowing it to continue status quo. This family has two daughters, one of whom is a special needs child, and thus already has a very full plate. Yet this gerontologist can offer just this ‘resolution’..?!?!?!

To me this is the classic case of a doctor being totally clueless regarding what is involved in attempting to care for an Alzheimer’s victim and I find it horribly remiss especially as this health care provider’s specialty is aged people. Very few families out there are capable of providing the care such a victim requires especially when one realizes her needs are only going to increase as the wicked disease further ravages her mind and body. She requires virtually 24 x 7 care yet both these adults work full time jobs on top of providing wonderful care for their special needs daughter. Even the Alzheimer’s Association recommends against having family attempt to care for another family member showing advanced Alzheimer’s mainly because the commitment, understanding and work load is beyond what most people can provide. In addition the stress and strain of handling such care will often completely exhaust the care-giver despite good intentions. This is why Alzheimer’s can rip apart families and destroy friendships; I saw this happen repeatedly while volunteering and in such circumstances the families were not even providing the care but rather just visiting their loved one at the specialized facility.

Why the gerontologist will not sign the competency forms is a mystery that the family is trying to unravel. No doubt it is based upon fears of some legal issues down the road. But should this care-giver’s personal fears force this wonderful family into a situation which will put untenable stress upon their family unit, further wear down the loving parents, cause additional stress to the special needs daughter and possibly do unrepairable damage to the marriage? Where is the logic of condemning a family to such a horrific experience in a futile attempt to care for a victim who is already condemned to death? If the victim had millions of dollars in an estate or similar one might see some rationale but this woman is just a lower middle class American with very limited finances and no portfolio or financial reserves.

Because this family is dear to me and because I know some of what their path will entail I truly fear for their futures. But sadly I know they are not alone in their peril; indeed, as the world’s population ages this ‘stealth pandemic’ will not be stealthy much longer. But until there is a cure for this most wicked of afflictions I fear there is little we can do. More and more people will be faced with situations just like the one I’ve related, if not worse, and probably will be given as few real options. There are no good answers to this pandemic; we can only attempt to manage it via a triage approach. But before long I fear we, as a society, will be forced to make some very tough decisions regarding how we handle a burgeoning number of elderly – and some not so elderly – victims of dementia.

So, what good can come of this piece? I can only offer the following recommendations based upon my experience and my observations:

1. When family members reach the age of fifty it is imperative to sit down, review their current health and have that tough discussion regarding how to handle their affairs.
2. At that same time decide upon a DPOA and MPOA, as well as secondaries, and have this drawn up in a legally binding document.
3. While doing this have any DNR (Do Not Resuscitate) wishes and similar clearly delineated and made legally binding.
4. Discuss any inheritance wishes and have them clearly defined in great detail and put into a legal document (i.e. will, trust, etc.).
5. Before your loved ones reach 65 years of age discuss with them their desires in retirement; if they wish to consider some form of assisted living DO NOT WAIT to get this process underway!!! Assist them in every way possible to review options, visit facilities and if at all possible put down a deposit. Try very hard to make it happen sooner rather than later. I say this based on experience; my parents did most of this in their early seventies but never actually put down the deposit. Then, as is so common, with age their outlooks changed and they became determined to remain in their home even after it was no longer safe for them to do so.
6. Once you begin this journey please, please, please avail yourself of the myriad of support mechanisms that exist; do not be too proud or too macho to ask for help. I can virtually guarantee you will face long, sleepless nights and feel utter despair such as you’ve never known while watching your loved one slip away. In worst case situations they can become angry and say and do things that will be extraordinarily hurtful. Never forget that in such situations it is not your loved one talking or acting; it is the disease!

And finally, when dealing with these situations, always ‘act from the heart’. You will almost assuredly be faced with making incredibly difficult choices for which there are no ‘good’ answers. Be prepared to experience overwhelming pain, utter desperation and gut-wrenching guilt; these are all entirely normal for those walking this path. While there are no good outcomes regarding this journey I can assure you that if you follow your loved one’s wishes and always act from the heart you will eventually be able to look back and know you did the very best you could do…