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…

North Country Retirement

I was dismayed this morning while scanning one of my on-line news sources – I refuse to use TV or printed media for news as they all lack true journalism and have their own agendas – and seeing the headline; “Why You Shouldn’t Retire At 65”.  Of course I had to peruse said article and when I finished I was initially left with a sad feeling that slowly built into disgust at what is now being sold as the ‘new’ norm; working until one is at least 70 if not older.  Of course I can understand the need to do so if one’s finances are not supportive of retirement but some of the other reasons given were just downright pathetic.  What does it say about this country that a ‘pundit’ thinks you should continue to work past age 65 if you ‘still have a job’..?  My God, does this implies that nowadays jobs for people over 60 are so scarce if you are lucky enough to have one you should cling to it..?!?  There were predictable tripe such as not retiring because you truly like your job – who would like working for someone else so much they’d forgo being the master of their own personal time – and something that I’ve always felt reflects very poorly on the whole ‘work for a living’ concept – you may not want to retire because for decades your job has been almost your entire life so suddenly having ‘no direction’ in your life is a bad thing.

I was literally forced out of the work place in ’06 by a combination of a changing job market, the beginnings of the financial meltdown and my age.  After working corporate for decades with a Fortune 500 firm I tired of the almost constant travel and thus took a position as a contractor in IT support with the state of Ohio.  My three year contract played out in February of 2006 leaving me a few years over 50 but in what I mistakenly thought was still a solid field in the American job market.  I failed to understand what outsourcing was about to do both to the salaries within the field and to position availability.  For 18 months I sadly followed all the traditional methods of looking for work with no luck; I even explored going back to work in my college major – food science – but soon learned that as soon as I was asked about my ten year hiatus from said field and I explained I went into IT my interview was over.  Despite a degree and 20+ years experience in the field I was ‘persona non grata’; I’m sure the fact that I’d worked in IT so it was assumed as soon as I found an IT position I’d jump ship as well as my age contributed to my inability to locate work.  Thanks to a very wise financial adviser I decided to take an SEPP (Substantially Equalized Periodic Payment) until I reached 59 1/2 years of age; thankfully doing this helped me be available to my mother as she slowly succumbed to the horrific disease Alzheimer’s.  However, I was only able to do so because when I’d first started working my father gave me probably the most important advice I’d ever receive from him: he told me as soon as I started a new job I should immediately sign up to have the max amount of my salary withheld and invested in the available company supported investment programs.  This I did across my almost 30 year employment career and because of doing so, along with some additional investing and the assistance much later on of a truly skilled financial manager along with life decisions (no children, no long term relationship, etc.), I did have the means to retire much earlier than I had intended.

Initially I did struggle with so much free time and it was frustrating to send out well over 100 resumes in just eight months of ’06 with no results; in this sense although I never did work again after my stint as a contractor I really didn’t accept I was retired until August of ’07.  However, once I recognized that with the ongoing world economic meltdown, the outsourcing of so many IT positions and my age I had little chance of finding a job I came to accept my situation.  At first it was difficult because I was making a mortgage payment but when Mom’s Alzheimer’s worsened and we had to move her into assisted living I sold my place for no real profit because of the housing bubble bursting and became a caretaker of the family’s home.  During this time I realized it was most likely I would never be financially able to retire to Alaska; I began to prepare myself and the process was long and painful.  Only my financial adviser even spoke to me about the possibility and did try to keep my dream alive.  I truly struggled living in the family’s home in Dearborn (MI), knowing no one and spending time visiting Mom; it was tough.  But I slowly started to realize volunteering looked like something I should try and happily the assisted living folks were only too happy to have me start volunteering.  I discovered I did enjoy working with the elderly and particularly those with memory impairment; this enjoyment was reflected in the quality and quantity of my efforts.  I continued to volunteer for two years after Mom passed; only my decision to retire to Alaska once I ran the numbers in January of 2012 and realized I could caused me to stop my volunteering.  For this I was eternally grateful as I was not only able to assist Mom with her final 18 months but I also made a positive difference in many, many elderly people’s lives and I discovered the real joy in volunteering for worth causes.

Musical performance for the Reminiscence residents of the Northville Sunrise

Musical performance for the Reminiscence residents of the Northville Sunrise

Many of my good friends could not believe I was volunteering with Alzheimer’s patients let alone loving it; as they often reminded me I ‘didn’t suffer fools gladly’ during my working days.  I cannot explain how or why this was; it simply ‘was’ and I went with the flow.  This taught me some very important lessons in my retirement; just as in general living attitude is everything in retirement!  If you fear it or cannot imagine what you will do with your time you will probably have issues.  Thankfully I was never someone who felt ‘defined’ by my job; sure, when talking with peers or colleagues I would probably have introduced myself as ‘working in IT field support for Company X’ but within me I knew I was so much more.  I’ve always possessed a strong spiritual side so to think of my essence as a salaried slave to some anonymous corporation was completely non sequitur.  I felt much more defined by my love of Nature, my joy in camping and hiking, my newly discovered love of volunteering, my joy in assisting the elderly, my interest in Nature photography and meteorology and, of course, my deep love of Alaska; to me these really formed the foundation of who I was as a human being.  Therefore I suspect I didn’t really struggle with the whole ‘loss of identity’ thing when I retired.

In hindsight I needed those three years of assisting Mom, discovering volunteering, cultivating the patience and willingness to listen required when working with the elderly to really make my retirement work for me.  All this and more really brought out my heretofore relatively low key extrovert tendencies; this, in turn, made it possible for me to experience many things I wouldn’t have even tried prior to these situations.  I spent many days wondering if I were really ready to retire to Alaska especially as I’d already decided I wanted to live rural and this was something I’d never before experienced.  Sure, I’d done my homework but one can only gather so much information regarding a topic like rural Alaskan existence from reading; I needed to talk with people who had experienced this lifestyle.  Thankfully my willingness to engage strangers in conversation gave me five hours of talk with a native Alaskan who lived in rural Valdez his entire life on the flight from Chicago to Anchorage which began my house hunting experience.  I had already held lengthy email conversations with my realtor and now good friend Holly and when we checked into ‘The Susitna River Lodge’ I immediately befriended the owners; they, in turn, introduced me to other locals and I talked at length about my plans and soaked up all they had to say about living in rural Alaska.  Because of this I felt much better prepared for what I knew would most likely be the biggest adventure of my life.

And almost three months into the experience I am indeed living my dream and biggest adventure!  I’ve met all my neighbors – up here anyone within a mile is a ‘neighbor’ – and have started working on developing friendly, conversational relationships with other locals who work in the local stores or PO.  I’ve decided to test those volunteering waters once again by offering time to the local NPR radio station – KTNA Talkeetna (FM 88.9); although I’ve only visited the staff and seen the operation twice I’m going back for more training this (Tuesday) afternoon.  To my shock I am being groomed to be a ‘reader’ for the local news; I can’t think of a much better way to get my name out to the locals!  I’ve really liked all the staff and other volunteers I’ve met to this point; I can see this opportunity as something I will find invaluable come winter.  Now that the tourists have largely left for another year I understand ‘Latitude 62’ which is a restaurant/bar in town is quite the gathering place for the locals; I plan to begin to visit on a more regular basis and strike up some new friendships.  The openness and willingness to talk on the part of the locals is just so refreshing and radically different from so much of what I experienced in the urban areas of the lower 48; there’s none of that ‘distrust by default’ attitude or that wariness engendered when someone is expecting you to want something.  Happily I truly believe I’ve found my home and unlike my life during the 30 years I worked and never really became part of a community because I relocated every two to three years to chase a promotion or new job I intend to put down roots in Talkeetna.

And so I once again find myself full circle and am wondering if I were to have taken this supposed ‘new’ normal and refused to do anything but look for work after my IT days to the exclusion of all else would I have ever found a job and more importantly, would I be living the dream I now experience?  Its possible I might have found work but almost assuredly at much lower wages and I most likely would’ve been ‘under employed’ as well and working in a much less pleasant environment.  But my honest feeling is if I worked until I was even ‘just’ 65 let alone 70 I would never have undertaken this dream.  I know the entire relocation process put an enormous strain on my body, spirit and emotions; there were days I wondered just what the heck I’d been thinking!  The months of planning had seen many ups and down and the complete re-writing of the relocation plan at least twice.  Getting the truck properly packed after ‘Two Men And A Truck’ had demonstrated such poor abilities was draining.  That very long 4,245 mile drive from Northville (MI) to Talkeetna (AK) via the Mackinac Bridge was a real butt buster which required nine and a half days two of which saw over 700 miles in driving.  Getting the truck unloaded up here was physically draining and the process of unpacking and organizing my new home often seemed to never end; I still have a sore back from moving heavy boxes around during the process.  I had to deal with many unexpected issues after arriving up here not the least of which was the fact this house is in a null zone for cell transmission strength; only by mounting an outdoor cell antenna and using an amplifier to boost the weak signal and a special planar antenna inside to retransmit the signal do I now have cell reception indoors.  In addition there was the snafu caused by not realizing I did not have PO delivery to this physical address; this required renting a PO box but more importantly meant I had handed out an incorrect mailing address to all my family, friends, business concerns and the like which had to be corrected.  I’m still working through the fall out from this error.  While its largely history now and thus I can look back on it with a certain sense of pride and humor while marveling at both the expected and unexpected learnings I also cannot help but realize I wouldn’t have been able to do so if I were even five years older let alone ten or more.

And so it comes down to this; retirement is what you made it (via investing, saving, lifestyle choices, etc.) and will make it (willingness to try new things, a need to make new friends while keeping old ones, a need to really look at fulfilling one’s dreams, etc.).  While volunteering I often heard elderly folks reminiscing and almost to a person they would sadly say if they could change one thing in their pasts it would be to go back and do something they never did often because it seemed too daunting, time consuming or expensive.  It didn’t take long for me to realize Alaska would become such a failure for me if I didn’t take the chance, make the effort and give it my best; at some point I refused to be one of those older folks sadly reminiscing about dreams unfulfilled.  In so doing I’ve become a kind of ‘poster boy’ for the over 55 crowd who dream of fulfilling dreams of their own; to them I say ‘never, ever give up on your dreams regardless of how impossible they might seem!’.  But I would also council this; do not let uncertain economics, political instabilities or family situations cause you to postpone your retirement under the guise of doing so for ‘just a bit longer so I can handle this’.  If I’ve learned anything from life its that our time on this plane is limited and so we should embrace our challenges but also learn to celebrate ourselves through doing for others as well as giving back to ourselves.  Failure to do this will most likely lead to unfulfilled dreams and sad, soft reminiscing’s in a wheel chair…

Anana with Nine and Luba

Luba (a Nazi death camp survivor), her daughter Nina and my Anana in the Sunrise of Northville’s Reminiscence Neighborhood