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…