The Aging Caregiver

The Aging Caregiver

By Stuart B. Smith.

Ten years ago, my wife of 32 years would be diagnosed with two serious and incurable medical conditions. Our lives would be changed forever. My wife, Ellen, would become partially disabled following any one of her 24 surgeries. Her level of disability following many of these surgeries would create a degree of physical need requiring my full-time attention in the role of caregiver which I, like many others, would find myself thrust into with little preparation. During many of her recuperations, Ellen would find herself confined to a wheelchair. At times, my wife was dependent on me for assistance with the most basic human functions. In addition to mastering the mechanics of direct care, I would learn a great deal about mutual trust. I would also experience an intense level of intimacy which came with the mutual, emotional dependency which is, I believe, inherent in most caregiver-patient relationships when caring for a loved one. Over the past decade, the role of caregiver has proven to be an emotional rollercoaster marked at times, by anxiety, despair, fear and at times the pure joy of sharing one’s feelings, hopes, and dreams even when they may be pipedreams.

Stuart Smith

I have now reached the age of 71. I am fortunate in that I have avoided injury or any serious medical condition which might permanently limit my capacity as a caregiver. With this said, I am not the person I was ten years ago.

Approximately 10 months ago, Ellen underwent her second neck fusion. The results have proven incredibly positive. My wife is driving for the first time in ten years. She can now walk a moderate distance with little discomfort. Ellen requires much less assistance from me and the quality of our lives has improved dramatically. We hope that these changes will prove to be long-standing, but we remain aware of the possibility of relapse resulting from either of Ellen’s medical issues.

When Ellen was first diagnosed, we were completely unprepared to deal with the debilitating consequences of her medical conditions. Today, the situation is different.  Despite the reality of my being older and with somewhat diminished capacity to deal with the rigors of caregiving, we now have the advantage of the opportunity to plan for potential unforeseen issues which might arise. We know that I will be impacted by the natural and inevitable process of aging. If we were to find comfort and security as we enter our 70’ and 80’s, we needed to create a plan for our future which would provide both of us with a sense of physical security and emotional comfort. We realized that living on a small farm with all the physical demands upon me and the lack of immediate alternative adult support, would simply not provide the necessary elements to meet our future needs both physical and emotional.

Together, Ellen and I made the heartrending decision to sell our small farm where we had resided for 35 years and raised our 4 sons. We needed to find a living situation which required less physical labor on my part and provided the necessary support for my wife in possible emergency situations. It was at this point that one of our four sons, who had recently moved, allowed us to build a small home on his property. We were delighted and overwhelmed by the generosity of his offer. This offer was made with the full knowledge of the seriousness of Ellen’s condition. We could now look forward to moving to a situation which would meet the essential elements of the plan we had devised, not to mention the joy of living close to loved ones.

I can now look to the future with the confidence that we have a plan in place which while not providing the luxury of absolute security it does consider the possible physical limitations which I will inevitably face as I age. As a self-aware caregiver committed to the long-term support of a loved one realistic planning is critical and necessary.

Stuart B. Smith

Director of Caregivers, U.S. Pain Foundation

Advocacy Director for Medicinal Marijuana, U.S. Pain Foundation

Featured image: Stuart and Ellen

Authored by: Stuart Smith

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Louis Ogden

Stuart and Ellen, it is wonderful to read a feel good story. I commend you and your wife for what has to be a very loving relationship. My wife and I have a similar situation except we have no children to help. I’m a chronic pain patient, 68 years old, and my wife of almost 46 years is a great caregiver and loving partner.

Susan

Thank you for the lovely post. I have been giving care to my beloved husband for the past 12 of the 27 years we’ve been married. In 2006, he was hit with a double-whammy: he was diagnosed with dystonia, and then he developed herpes simplex encephalitis (HSE) that did NOT get diagnosed in time for treatment. He has endured two neck fusions (so far), a lipomectomy (near his cervical spine), an ACL replacement, and has degenerative bone disease (spine, mostly). He is still able to work a reduced schedule, but the time he’s not at work is spent in bed. I have had to shoulder the burden of keeping house, raising and educating our son (now 21), and looking after/spending time with my husband.

I try to look after myself: I don’t care too much about the state of the house (it’s usually not an embarrassment, and that’s good enough), I don’t over-do things, and I stay connected with friends and, I attend church weekly, but I worry about my own health. So far, so good (knock wood!), but I’m still fairly young (50), and I’m starting to feel very old. What will become of us if I were to become chronically ill, too?

Anyway, it’s nice to know I’m not alone, and that my fears are not unique. God bless us caregivers! I truly believe this is my life’s purpose (caring for my DH specifically); it didn’t come naturally, but in retrospect, it seems like I’d been preparing for this role my whole life. Heaven help me…heaven help US.

Heidi

Thank you Stuart for sharing the caregiver side of chronic pain. I also am a caregiver for my husband Jim, and know both of us will face many challenges as his conditions, and our ages, progress. He’s only coming up on 60, I’m 55, without many financial resources, but are also lucky to have family, even though they also have their own health issues. We plan to come together to help each other, and persevere! God’s Blessings to all!

susan

I agree with most of the comments since I live with multiple sclerosis and have had two back surgeries. I had to stop defining myself as a hair stylist etc. I have found other ways to be creative. sometimes it’s difficult but I won’t give up on myself.

Kathy Riebeling

This is such a hard situation facing so many seniors. My husband is my caregiver & I don’t know what would happen were he to fall ill or worse. There are so many couples with no children (of from whom they are estranged) that this is a major problem. What is the solution?

Michael Quinn

God bless you. Without my wife I know I would not have made it this far.

Virginia

You are so blessed to have have each other and family too. There are some (are there?), who have no one, but a few elderly friends, who have their own families.
I leave it, of course in the hands of the Lord, but it came to mind when I read such a sweet story such as the one here: what about all those of us who have no one? What happens to us when we need a caregiver as I’m one now a caregiver and been one for many years now?

Susan S

True Love

Lovely story, your love, respect, commitment are woven throughout. I hope you post a new story about your small home.

Robert D Gephart

I suspect that you and Ellen must wonder if your posts are having much impact. I can tell you that I very much appreciate having them and that the posts you and Ellen write are a great help to me.
Many thanks to you and Ellen for all your hard work and sharing.
Bob