The Caregiving Dilemma …

One of the most difficult circumstances affecting families is the care of an elderly member. I remember when I was growing up in North Dakota thirty years ago, common practice was to put them in an “old folks home.” Or should I say commit them, commit them to their death. I hated visiting my grandmother in the Lutheran Home in Minot. Not because I didn’t want to see her, but rather the place. It was an abyss of hopelessness. Everyone there was just waiting, just waiting for the inevitable staring them in the face every morning … if they even dared to look in the mirror.

Often family members don’t live nearby. They’re states removed. And the patriarchs and matriarchs of the family don’t want to move. Often where they’re living, they’ve lived for decades. It’s the only place they know. What few friends they have left are nearby. The garden, the porch … it’s home. 

The only other option is to put them in an “old folks home.” Often these “old folks” can take care of themselves with just a little assistance. It’s the younger family members who want them sent away. It puts them at ease. Out of sight – out of mind. This way they can tell themselves they’ve done something. But instead – what if that “something” was just that little assistance. It may only be by checking in on them every other day, making sure they’re taking their medication, washing the dishes, washing their clothes or making sure they have a supply of healthy food. Or much of time it may just be sitting down and having a cup of coffee or taking a walk around the neighborhood and listening … listening to stories of the way things used to be in time when things were simpler.

old woman posterize

In the last few weeks there have been a couple newsworthy stories here in Montana on the caregiving front. First, Montana’s Democratic Senator, Jon Tester, announced he was proposing a bill in Congress intended to assist caregivers, often family members, who lend their time and financial resources in aid of others. Tester’s bill offers up to a $3000 tax credit for anyone who invests at least $2000 assisting the elderly.

While well intended, I look at the proposal as little more than political posturing. Caregivers who most need assistance probably don’t pay $3000 total in taxes, since a good portion of their time is spent rendering unpaid assistance to those needing care. And even if they did, I didn’t see the proposal offering any concessions for investment in time and labor – only hard financial outlay.

Being a caregiver myself for my two elderly parents, I can empathize with those put in this situation, voluntarily or not. To not take on this role isn’t even a question. You just do it, regardless of what effect it had on my personal life. I view my job description here as, “I make sure things don’t go sideways.” I make sure there’s good food on the table, food bought from the end isles at the grocery store … not from boxes in the middle. I make sure they realize they can’t do the things they used to do. What is it about ladders. Ladders and old men are like bees and honey. But all this is nothing compared to the effort needed to make sure “sideways” doesn’t include mental atrophy. I’m living in their world. Mine is fifteen hundred miles away in Los Angeles. But I recognize this is what I have to do and deal with it accordingly.

The second bit of news related to a work group put together by Montana’s Governor, Steve Bullock. Bullock announced the formation of an Alzheimer’s assistance plan for the state. Alzheimer’s disease falls dead center in the middle of the caregiving dilemma – stretching its tentacles of family overwhelm, economic and emotional, far and deep. From what I can gather, this initiative mainly concentrates of public awareness and connects dots between the different services the states and communities already have. In addition there’s some mention of training existing nurses on dementia and Alzheimer’s care. Nice idea but pragmatically naive since Montana already has a chronic nursing shortage.

The creation of this plan recognizes grim reality of the generational shifts America is facing. And with these shifts we’ll see also an increase in dementia and Alzheimer’s. Montana is projecting an increase of 40% by 2025. State governments are now starting to see the picture, but they have a long way to go.

However, government and formal institutions can only do so much, in fact they normally end up doing a lot less than even that. Even with the valiant attempts to streamline the formal assistance process  – the responsibility of navigating the maze is still up to the overworked caregiver, or worse yet the elderly person directly affected. Having dealt with my personal battle with lymphoma and its treatment, I know the integration between the medical system and the effects it has on the realities of a person’s actually life is greatly lacking. Formal institutions don’t play well others … and silos are their specialty. The healthcare industry is much the norm rather than the exception.

While much attention is directed to those in the most dire situations, such as what we’ve discussed above – dementia and Alzheimer’s patients, we can’t ignore our elderly that can still function in society. There’s always formal care in nursing homes as a last resort.But what about those who are just getting old? But shouldn’t we make every effort to keep our elderly loved ones at home if possible?

Being cut off from society is a killer for the elderly and shut-ins, literally. The less fortunate often have no family or friends around to make sure their basic needs are taken care of. They don’t have anyone to make sure they eat properly or take them to the doctor or get their medications. And that’s not even saying anything about mental support. Their likely future involves depression … or even premature death at home or worse yet, in an “old folks home.” And for those who have experience, “old folks homes” aren’t cheap. If caregiving family members can avoid bankruptcy – they are some of the lucky ones. My parents weren’t when my grandparents got old.

I’m not a fan of the government, but here’s an area they can help with and all they have to do is divert some of the money they’re already paying out to “old folks homes” and at the same time get a much better return on it.

Medicare pays these institutions at a rate of up towards, well who knows – it’s a lot. It’s well into the tens of thousands of dollars a year. What if in some cases this care could be handled at home with a periodic nurse and a live-in relative. The nurse would be paid by Medicare, but so would the relative – say a grandchild. This way not only would the care be handled, but the family ties would be maintained and the young person could have a source of income when they may not have one – or maybe not a full-time one.

This cross-generational solution is especially attractive in rural communities that are experiencing severe generational greying. These communities are literally dying off. And the ones that aren’t often move away to a care facility in a larger city. By compensating young family members, you’ve not only provided a healthcare and wellbeing solution … but are doing it by rejuvenating the small community. And imagine if these young people had children of the own who would replenish the schools, both financially and socially. And what if on the side a couple of young people worked together to breathe some fresh air into one of those abandon buildings on Main Street – turning them into organically founded and operated small business ventures. Small towns, specifically rural ones, rely on the maintenance of family ties to survive. Once those ties are severed – so is the lifeline. Hoping this lifeline will be repaired by unrelated newcomers is an unrealistic pipe dream.

Now I’m sure there are hurdles that would have to be overcome to create a system that extends Medicare vendor or provider status to family members, but there are hurdles in any new idea. But the institutional stakeholders in an idea like this are significant and diverse. Rural states, the elderly (i.e AARP) and small business organizations all could see their members benefit greatly. The existing players in the elderly care facility industry would most definitely provide resistance though. So be it. They’ve had a free ride for too long.

But let’s look past the government as being the solution. Even if they are, it’s just a bonus. Ultimately the solutions will found closer to home, and not just with family members – but also within the community as a whole. Through organized efforts of friend and neighbors, community caregiving efforts are a perfect application of solutions generated by the Front Porch method I’ve been advocating. We just need to adapt our social behavior to make this happen.

“Few Americans today say they know their neighbors’ names, and far fewer report interacting with them on a daily basis. Pulling data from the General Social Survey, economist Joe Cortright wrote in a recent City Observatory report that only about 20 percent of Americans spent time regularly with the people living next to them. A third said they’ve never interacted with their neighbors. That’s a significant decline from four decades ago, when a third of Americans hung out with their neighbors at least twice a week, and only a quarter reported no interaction at all.” (Community Ties in an Era Isolation)

This needs to change. We have neither the time nor the resources to waste to think that these issues, specifically with the aging, are going to solve themselves – or be fixed by the government. Even the Medicare idea I laid out above, however much common sense it makes, has little if any chance of becoming reality in today dysfunctional Congressional state. Instead, the clowns in Washington will pat themselves on the back celebrating Jon Tester’s pragmatically inept tax credit plan instead – or something equally vacuous.

The first step we need to take is to “bridge the gap”  between our generations. It’s the young people in our community who are our biggest asset. Not only will the young provide the physical care the elderly need, they’ll also be the ones we need to rejuvenate our communities so there’s something to live for … regardless of generation.

Back a hundred years a community had to look after itself – young and the old. They had no choice. Their survival was at stake. They didn’t have the sophisticated market system of exchange spanning unseen geographies nor live in the relative luxury we do now. They just had themselves. And with age expectancy increasing and the Millennial generation being smaller than the retiring Boomer generation was at this time in their lives, we have a ticking time bomb. Cross-generational cooperation will not be an option … it’ll be a necessity.

Through the program “I’m Not Alone Anymore,” Community 3.0, and its Front Porch network, aims to not only help these forgotten people with their physical needs but also provide emotional support by bringing them back into the community. Even if just means a weekly visit for a cup of coffee … they will not be forgotten for long. The weakest link of a community ultimately determines the health of the overall community.

We can’t let our neglect of the elderly and resulting burden that would put on our young be the undoing of our entire society.

Each “Client” (elderly person) can be entered into a central database that Front Porch “Helpers” will have access to. In addition to the basics, the database will include information such as contact information for friends and family, favorite foods and activities, historical info and anything else that can be used by the “Helper” to connect with and make the lives “Client” more meaningful. Also included will be logistic information: date of last visit, schedule date of next visit and relevant agenda information. The database will provide an informed point of reference for anyone that might have to step in for the primary “Helper” should they not be able to visit.

I’m not insinuating that the community can provide that magic pill that will solve everything. But what it can do is provide the tools to mend the “safety net” that we’ve let fray to point of utter disrepair. Turn your entire community into the caregiver who helps make sure “things don’t go sideways” by maybe catching things before they become problems that are beyond fixing.

And who knows … you might even make some new friends.

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If you haven’t, I invite you to start by delving into my ideas by reading the series, On the Road to Your Community’s Perfect World,” This is my articulation of how we can create better, more inclusive, unique communities as the solution to our society’s pressing issues. Consider each week’s post a Mile Marker (MM), a cerebral off-ramp from the highway of your daily routine, taking a you little further down this road to a better version of society.

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You can follow me on Twitter at @clayforsberg and on Google+.

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2 thoughts on “The Caregiving Dilemma …

  1. Interesting take, Clay. I think there is a lot of distancing we do as a society from the elderly. impaired, and infirm. The Institute for the Future out of San Francisco has done some interesting research and reflection on what aging will entail as the years pass. I think you might find them intriguing if you haven’t discovered them already.
    http://www.iftf.org/home/

    1. Thanks Kris. I’ll definitely check it out. Living in a rural community while providing assistance to my parents, this issue is front and center to me every day. Yet our policy makers seem to just sweep it under the rug thinking it may resolve itself on its own.

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