Tag Archives: baby boomers

Sacrifice

This week I read an article a friend of mine shared on Facebook.  It had to do with families who have special needs children.  I agreed with most of the premise in the article. However, the author stated that nursing homes would be empty if only family members were willing to sacrifice.  That – I certainly don’t agree with.

No, I don’t have a special needs child.  I do have a cousin with two special needs children, and my husband had a sister who was developmentally challenged.   I have watched both families struggle to make sure all were well cared for.    For 15 years I have worked with families facing tough situations and challenges as they struggled to provide care for a loved one with Alzheimer’s.  And I have a mother who is in failing health with two progressive, degenerative diseases.

I actually did the brave but probably stupid move of commenting on the article.  My comment was simply that “families struggle mightily with tough decisions and sometimes there are extenuating circumstances and situations where the right decision just might be a nursing facility.  I don’t think we should ever “judge” what we view as someone else’s sacrifice”.  And lo and behold the author of the article responded very angrily.  She informed me that it was “trendy” to tell others not to judge and that there was absolutely no reason why someone, no matter the condition/illness/etc. couldn’t be cared for at home.

Clearly, for both that author and me, if we put it out there, we must expect that someone might just disagree with us. That is a risk I take every time I post a blog – or post anything on social media.  So, first, she needs to toughen up!

But secondly, seriously, now dare we, any of us, sit back and judge or even challenge, from afar what constitutes “sacrifice” for someone else?

I learned from years of facilitating support groups, that one person cannot and should not judge another person’s pain.   Sure, you have the fakers out there, who try to exaggerate their hurt or pain for whatever warped psychological reason.   But in general, your pain is your pain.  We should never try to gauge if your pain hurts more than my pain.  There is no way to measure or prove whose pain is more intense or “worse” so don’t even try.   The same goes for sacrifice.

Each family situation is different when it comes to caring for a loved one with a serious health or developmental challenge.  And each family may come up with a different solution.  I caution families to “never say never” – never make specific promises or rash declarations about what you will or will not do, because you simply don’t know what the future may hold and what sounded like a great solution now, may not work a year down the road.  Finances, other family issues and challenges, what other resources and assistance are available, your own health challenges, might all be a factor in decisions about care.

I do know one thing for sure. (to  paraphrase Oprah) Actually I know several things for sure about caregiving and one of them is, it will be harder than you think.  No matter how determined you are, or how organized, or how many resources you have, it WILL be more difficult that you thought it would be.

And the one difficulty that you simply cannot know or prepare for is the emotional challenge.  In fact, that may be the biggest sacrifice one makes as a caregiver.  You will sacrifice your emotions. You will begin a ride on a roller coaster of unfathomable twists and turns, highs and lows.  The guilt will hang over you like a huge dark cloud. You will second guess yourself at every turn.  You will research and consider and ask others, and read books and in your heart know that what you are doing is the best thing, but then guilt will creep in.  It will nag you and harangue you like no other emotion.

My family and I did all we could do to keep our mother in her home. Her illness and our circumstances, her doctor’s advice, and two consecutive broken hips finally made that impossible.   And frankly, it made sense.  Why should we spend mother’s resources on heating a huge house when she lived in two rooms? Why should we spend resources on extensive repairs when we may need that money to provide for her personal and medical needs for many years to come? Why should we keep her somewhere, where none of us live? Where we cannot be there at a moment’s notice to assist or be with her?

Assisted living met our needs for many years.  But even in assisted living, I was on call at all times.  My mom’s needs super cede my own.  I have cancelled trips, spent many sleepless nights – some just worrying but some in the recliner in her room at the assisted living- and even left my full time job in order to be available for whatever she needs, whenever she needs it. But advanced illness means she must how receive more intense care.  And a skilled nursing facility is where she can receive that care, 24 hours per day, 7 days per week. My own home is not designed to care for an ailing aged person properly.  I am not a nurse and there are simply things I cannot do for my mother.   24 hour nursing care in the home is cost prohibitive.  Yet someone else can write an article that says “nursing homes would be empty if families were willing to sacrifice” and the guilt returns as my anger rises.

Heck yes, there are some facilities where, as I often say “I wouldn’t put my dog there”.  But facilities are necessary – like it or not.  And we as a society should make sure those places are regulated and monitored properly.  They should be  expected to and held accountable for providing quality care – not just on  the logo on the side of their van- but in the actual day to day care for those who reside behind their walls.  But don’t tell me what I have sacrificed or not sacrificed.   Don’t tell me what I “should” do, when I have pondered, prayed, sought wise counsel and spent many hours seeing to my mother’s wellbeing.

This morning, my mother shed tears and said she wanted to go back to her home. But in this place, where she now resides, wounds have healed; medicines are given properly and in a timely manner; equipment she needs is ready at hand; and the extra human hands we need are nearby as well.  My heart broke once again, and I shed my own tears.  But I know this is the best place for her at this time.  Whether our sacrifice, both mine and my mother’s is greater or less than another’s is not the point.  That both of us are sacrificing much and that love is at the core of all most certainly is the point.

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Positive Change?

In the past couple of weeks I had the opportunity to attend the first ever Healthy Aging Summit in Washington DC where I presented an academic poster and I was invited to be a presenter at the Florida Council on Aging’s Annual Conference on Aging.

Usually, I am busy blogging about dementia care of the lack there of or information that I hope will be helpful for caregivers.  While this post will certainly speak to those issues, I want to share some information that I have gathered from these two conferences and some random thoughts about some of what I heard and learned.

First, I have always thought that we brilliant baby boomers should be able to offer solutions to some of the “aging” challenges we bring as we age!  Turns out I was correct.

The opening keynote speaker at the Healthy Aging Summit was Colin Milner, the CEO of The International Council on Active Aging gave me a new term during his presentation – Longevity Revolution.  Not only is that a more positive description than the Silver Tsunami term or Elder Quake  that has become popular,  it spoke to his philosophy that we should begin to  look at aging in America as an opportunity rather than a challenge.   Milner challenged attendees to look at the possibilities of aging rather than the challenges.

I liked that term, “Longevity Revolution” now that we ARE living longer.  I also liked the comment by Moderator Dr. Don Wright, Deputy Assistant Secretary for Healthcare Quality within the Department of Health and Human Services, who said “We want people to die young as late in life as possible.”    That would certainly be my goal – and why I often say I want to be hit by a bus. No one wants to “live” in a state of decline, dysfunction and dependence.   We all want to go, after a great and active day, quietly in our sleep!

This conference was interesting as well, because I serve on the board of directors of an organization that hopes to foster opportunities for our citizens to live and age with dignity and purpose.  Within that organization we are facilitating a project   looking at how we could change/adapt/redeploy resources to meet the needs our aging population presents.  One of the ideas is that we might focus on the entrepreneurial opportunities this could provide.  

I am fortified and pleased that at the conference I am currently attending, it appears folks are tapping in to that entrepreneurial spirit. One company will deliver nutritious frozen meals to your home. These meals can be simply warmed up in the microwave.  Yes, there is a cost.  But many of us would pay for that service, to ensure that our parents or even for ourselves are receiving proper nutrition!  Or how about the company that is starting a “shared housing” business?  What if you had an extra room in your house that you were willing to rent at a very reasonable rate and you simply needed a drive to the grocery store and to your doctor appointments a couple of times per month? Or let’s say you are retired, live alone and you just need someone to mow your yard or shovel your snow?    This company will screen both you and your potential “tenants” for compatibility and of course, safety – they do criminal background checks – and then connects the two of you.   Sort of like those on-line dating sites, but no dating involved!  This would be perfect for college students who need an inexpensive place to live and could provide some simple assistance for those who can still remain in their own home with a little help.    Yes, it’s similar to the “golden girls” concept but intergenerational and would be helpful for those who may not have a group of friends with whom to reside.

The down side to some of this positive thinking is that, as we try to put a positive spin on aging, we must still accept the fact that we all DO age.  One presenter spoke the need for more personal responsibility, meaning that many of us KNOW what we should do to improve our health as we age, but we simply don’t do it.  (Put DOWN the donut and exercise, friends!!)  However, we must be careful with this theory. As one aging expert said “Something in our bodies will break as we age, through no fault of our own!”  We mustn’t make those who develop an illness or find their abilities diminishing as they age feel guilty, as though they have done something wrong.   Certainly, that would be the pendulum swinging too far in the other direction.

And as I listened to two Alzheimer’s researchers speak about healthy cognitive aging, I thought of all those brilliant and otherwise healthy individuals I have known who have had to face the challenge of Alzheimer’s disease.   It’s hard to put a positive spin on that.  I was a bit miffed and felt that maybe they were trying to be positive about a topic that has no positive aspect.  But then  I had this thought,  maybe as we begin to think more positively about our aging population, we will lose the stigma that Alzheimer’s and other dementias still carry.  Alzheimer’s has been easy to ignore.  It has been seen as an illness only afflicting the “old”.  Those with Alzheimer’s have not often remained in the public eye – thus easy to ignore.  But that is changing and it can’t happen too soon. With more individuals being diagnosed earlier in the course of the disease and those with Young Onset speaking out, we are now hearing their voices and seeing their faces.  Maybe this will motivate our elected officials to put their money and policies where their mouth is. Not one candidate says Alzheimer’s research is not important.  Maybe we can use our power and our voices to compel them to increase the funding to meet the need for more effective treatments and a cure.  No more lip service, let’s demand action.

The times are changing and it is important that those who work with the aging population be flexible as these times change. This week, I not only presented a workshop on “Sex in Long Term Care” at a large aging conference, I listed to another presenter discuss sex after age 60.  Some of you may not want to talk about sex, especially in the context of your parents or grandparents who live in long term care!  That’s why the subtitle of my presentation is “Eeeew or OK?”, because many do think of it is an “eeeew” topic!  However, as we baby boomers, who coined the phrase “make love, not war” move in to long term care it is an important topic for both those who reside in long term care and those who work in long term care.  In addition, whether you like it or not, believe it is “normal” or not, hate the topic or embrace the topic, the Caitlyn Jenners of the world are aging and may, at some point, reside in long term care. Are we ready for that?

So, today, I am intrigued at the possibilities.  Maybe, this “longevity revolution” can be an impetus for positive change, not just a tsunami or quake!  And just as the baby boomers influenced the work place, forced civil rights changes and lead the sexual revolution – we can be the motivators and even the innovators as we enter our final years.