Would you Take on Responsibility? Aging with Chronic Pain

Would you Take on Responsibility? Aging with Chronic Pain

As we all move ahead in our own unique journey, there is a time when living with Chronic Pain, along with the inevitable physical decline aging imposes upon us all, that the issue of safety becomes paramount. For those of us with serious chronic medical conditions, decisions regarding safety become pressing and must be addressed, hopefully prior to any type of incident which might compromise our physical and emotional well-being. One must decide as to how to plan to remain as safe as possible in the future. We all face this, medical issues or not, but it’s even more concerning when you are dependent on a wide variety of medical help to be in a maintain a safe environment. While the decision to address the issue of safety by changing living arrangements is often emotionally draining, hopefully, options are available to you that include either remaining in your home for the rest of your lives with support or downsizing to a smaller house, apartment, condo, elderly housing or assisted living. The bottom line is, someday, you must begin that difficult discussion we all would love to avoid. What is the safest and most feasible way in your final stage of life? I wonder if your life will lead to what has happened to us.

Before my twenty-fourth surgery, a second fusion of the neck, I was experiencing catatonic episodes. All I could do was hold on tight to life for the surgery date to come. It was terribly stressful time not only for myself but for my whole family as I attempted with all the physical and emotional energy in my being to hold on for that repair that came in time to save my life. But meanwhile, the experience of watching me become unresponsive in front of those I loved created a form of PTSD for myself, my husband, and our entire family. If my husband stepped out to swim and tried calling me to check-in and I didn’t answer the call, panic crept right into him. The best I could do was keep that phone right by my side anticipating that check-in call so I could relieve any concern as fast as possible. But when during one of these episodes we were not able to locate my husband, my oldest son and wife took control, stayed by my side and in time, rode with me in the ambulance to the hospital in the desperation of not knowing what to do to help me.

Ellen Lenox Smith

So now on to the good of this story – surgery finally happened and after recovery, my health has much improved along with the quality of my life. Although it took months for me to recuperate physically and for the family to heal emotionally from the horrible episodes, it led to our oldest son and wife offering to have us move into their home. In my years of raising our four sons, never once in my mind did, I imagine one of them would want to take the responsibility for their aging parents and especially me, living with a progressive, incurable condition. But the offer came and after weighing out our options, we decided to take them up on it. In time, we sold the farm and made the move to the safety of their home. The move kept us in the same town, still near dear friends and to a new, clean and easy to take care of space that we are just thrilled with.

We had no idea how all this would work out. We didn’t want to invade their space, didn’t want to interfere with their lifestyle, and certainly didn’t want to become a burden – for this was their time to live life to the fullest while young, healthy and full of adventure. But we leaned towards what it offered – safety, help if needed, remaining in our town and state where all my medical help is and the extra bonus joy of being closer to their son, our first grandson. We certainly had feelings of anxiety in the process of this transition. It became a mixed bag of emotion as the aging process forced us to confront the rather unfamiliar feelings which so often accompany loss, physical decline and aging!

But for those of you considering an option like this, understand that this can work out. We observe firsthand that their life is just packed with responsibility so occasionally, we invite them for dinner to help ease their burden. My husband, who is used to and loves working outside, has been able to mow the grass and keep the yard neat. And the new garden that another son came home to create for us has also provided healthy food and fresh flowers for the two families. When the other sons and families come home to visit – we have an instant reunion!

As mentioned before, it never occurred to me that a child you raised would consider taking on the responsibility of helping their parents to remain safe in their final years of life. One simple door between our home exists in the case that day ever comes that we need help. We will continue to count our blessings to have this new home of security and safety and never lose sight of the sacrifice they have made in their lives to make this happen. Families caring for each other should be a very natural and rewarding experience. Hopefully, other young adults can, as our son did, perceive this as an opportunity, not just a burden. May other young adults think about how they can help their parents and be willing to be selfless like our son and wife have done.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Rosalind Rivera

I as a chronic and intractable pain victim can proudly say that I did do this for my parents when they became unable to care for themselves. There came a period in my life when in my 30s that both of my parents were hospitalized in two different counties. I had 3 children at the time, all under age 7. I was working in Manhattan for a major brokerage company, would ride the trains on the long trip to Long Island, pick up my kids and drive to the Bronx to visit with my mom in the hospital and there I would do what nurses should have done. One day, I found out that my mom had fallen out of the bed the night before after calling for help as she needed to use the bathroom. She slept on her own urine on the cold hospital floor that night. I was livid. From there, I’d drive to Manhattan, about an hours drive as there is always traffic in New York City. Anyway I’d go to see my dad, also in a different hospital, where I would spend time with him and see to his needs. I would then ride back to Long Island, feed my children in a haste and maybe grab a sand which after which I would take a very long ride to Suffolk County, I lived in Nassau County. I’d then attend my own classes as I was going for my Bachelors degree and when those were done I’d begin my long journey home with my three little ones asleep in the back seat.
Eventually my dad died in a hospital but I’m happy to say that I was right by his bedside when he He ventilator stopped.
Mom came reluctantly home with me after being discharged from the hospital. It was so hard as now my mom could no longer feel anything from the neck down after being a passenger in an automobile accident.
So at first things were so difficult. I had three small children, a job, school, a huge house to care for and to make the scenario impossible, a husband that literally was a terrifying Psychopath
10 months.. mom died.
Today I am alone, have 3 adult children but none care. I’m sick and in horrible painI’ve been abandoned.

Tracie Lundy

The full circle of love

James McCay

Life’s rarely been “kind to me” & when it was I MADE IT HAPPEN by myself and did it alone (perhaps revisiting special experiences w/people I cared about).
I have a catatonic (thank goodness!) Sociopath/Borderline Personality, gambling addict mother in a Nursing Home, a dead (2015) DEADBEAT father who had close to a MILLION in cash & assets & I GOT NOTHING because this IDIOT trusted his other Sociopath wife (my step-monster) to give me the $50,000 cash he left for me (after STEALING and selling hundreds of thousands of dollars worth of MY SPORTS CARDS he STOLE in 2001 just when I started getting sick!), but she kept it for herself and lied to me instead!

So I’ve had to depend on MYSELF ONLY my entire life. Now that I have the terminal form of Stage 4 Myasthenia Gravis with Hyperthymusism- that changed nothing! My CRAZY “family” only cared about themselves and NEVER ONCE HELPED ME with anything in my entire life!

At least I got to tell my father in 2001 when I left my sports cards with him for safe keeping; “You know if you die 1st, I’ll never get a dime.” Then he just nodded “yes” like a downtrodden dog on a short TIGHT LEASH! THAT’S NOT A MAN! Then I told him “The only thing I blame you for is being stupid enough to have a child with my mentally ill mother; thinking it would improve your relationship!”. He agreed to that as well…
Then when I got settled back in Florida, I called to get my cards to me (that I prepaid him for) & gave him over $100,000 worth of my cards FOR FREE! — HE REFUSED TO GIVE MINE BACK!

In 2010- dying of kidney failure, he sends me less than 5% of all my cards (the leftover junk) which he recased & had PRICED ready to sell. Of course he lied his way through that too.
I was homebound & mostly bedridden in 2010 with a super angry dementia, Alzheimer’s, Parkinson’s, mentally ill mother daily. Then my mother STOLE cash from me to gamble ($400 rent wasn’t enough).

So you think you have problems?

HI Ellen, I remember when you were initially considering this move and how nervous and stressed you were about the thought of it. I had encouraged you then. I’ve often wondered if you ever made the move and how it was going. So, I’m happy to hear that all is going well. It sounds lovely.
Once again, you are so blessed to have such a caring family. Many of us have no support at all. Enjoy and Best of all. Maureen M.

Don Prue

Ellens story should be told on the Dr. Phill show.
God bless you and your family Ellen. It’s an unfortunate experience for you physically but fortunate that you have a loving family for help and support. I don’t know what my life will bring with no family to turn to. I’ve had seven back surgeries and [because I’m accustomed to hard work] pulled the screw anchors loose. My surgeon said there is nothing left to do and the constant pain is sometimes unbearable but I have no options but to live with it virtually alone.
Dr. Phill had someone on his Nov. 4th show who admitted to faking pain and intentionally injuring herself to get hydrocodone. That enraged me because that seems to be the impression the majority of people have toward anyone taking narcotic pain medication. Having chronic pain is like having leprosy in today’s world thanks to the stigma created by the phonies and the media.
Ellens (and my) story have to be presented to the public in the same forum to help remove the stigma that only makes a difficult experience worse. We need empathy not cynicism.

Denise

I would love to see the other side of this story, where you have someone with disability and / or chronic pain taking in an aging parent with disabilities.
How we can continue to help our parents/ relatives and help ourselves.