Once a Caregiver, Always a Caregiver

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Editor's Note: Meet Sandy Morris, an experienced spousal caregiver and professional in the elder care industry. Through an ongoing series of blog posts, Sandy will share insights on her caregving journey and valuable information on complicated topics such as Veterans benefits and paying for care. In this first installment, Sandy introduces herself and shares her story of caring for her late husband for over a decade.

August 13, 1998: The date my late husband, Michael, was diagnosed with stage 4 esophageal cancer. Many of you know the shock of receiving a terminal diagnosis. I likened it to being locked in a dark, unfamiliar room while groping the walls for a light switch.

Michael’s prognosis was a 10% chance of living 18 months post-diagnosis. Not very good odds, but I glommed onto the fact that somebody did survive, and it might as well be my husband. After all, he was only 44 years old at that time and in otherwise excellent health. I figured that conviction would serve me, give me a way to cope, unless or until life informed me otherwise.

I also thought he would either live or die. I had no idea of the grey purgatory between those two points, but I was to learn of this sad no man’s land in the years to come. Prior to Michael’s diagnosis, I thought people who were cured of cancer returned to the good health they enjoyed before. Now I know nobody survives without throwing something overboard.

The first three years post-diagnosis were horrific. Surgeries, hospitalizations, infections, complications, one thing right after the other. We even faced surprise appendicitis and an appendectomy! If I had to calculate Michael’s chances of surviving all the extreme challenges he faced, he would have had an easier time getting through the Biblical eye of a needle.

He was left with disabling morbidity from his radiation treatment, which affected his heart, lungs and spine. He also suffered the usual chemo-related morbidity, but this mostly seemed like small potatoes compared to congestive heart failure, restrictive lung disease, pulmonary hypertension and destroyed discs in the thoracic region of his spine. He also developed a whopper of an anxiety disorder.

Miraculously, Michael did survive and he stayed out of the hospital for the next nine years.

He even managed to enjoy his life. Then he went through an extreme health crisis in the fall of 2010 that began with aspiration pneumonia. He struggled to survive for the next six months, then finally stabilized, but in a much diminished state.

For the final three years of Michael’s life, I became a full-time, stay-at-home caregiver. As his health continued to decline, Michael opted to go into hospice. He died six weeks later, on August 18, 2013, on his terms, at home and at peace.

Until my late husband’s health crisis in 2010, I worked a full-time corporate job as a department manager. I had good insurance during this time, but still found it very difficult to meet Michael’s medical expenses. As you may know, long-term chronic illness is not a wealth builder. Once I became a full-time caregiver, earning a living became much more challenging. I cobbled together a variety of small income streams, and we somehow met the challenge.

I learned a lot of lessons the hard way. I sought answers and resources and many times had a difficult time finding either. But ultimately, I survived. In spite of the grim statistics for caregiver mortality and morbidity, I’m in good health and have retained an optimistic and joyful attitude toward life. And I’m excited by the possibility that something I share in this blog may make a real difference in the lives of other caregivers and their loved ones. I guess once a caregiver, always a caregiver!

Sandy Morris was married for 32 years and was her disabled husband's caregiver for the last 15 years of their marriage. Working in the senior services sector for the last three years, her experiences on both sides of the caregiver equation allow her to provide valuable information on everything from VA benefits to common caregiver challenges.

War Veterans Association of Colorado

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4 Comments

I had my first diagnosis of multiple myeloma stage 3 when I was 44. until then I had exemplary health...I wouldn't have known I was sick except I fell off my horse and my hip broke. it didn't break all the way at first, so I stayed active and a few months later again riding my horse my neck broke. after my diagnosis which was grim because that cancer only has 3 stages..I was there.. I was given a stem cell transplant which later I found out I didn't need. I was also given radiation treatments I later found out I didn't need. If my husband hadn't taken me to Cancer Centers of America when the cancer came back 5 years later, I would be dead I was already blind in one eye from all the lesions on my spine. we were part time caregivers for my mother who had Alzheimer's. It was a very stressful time... Immediately after her death my now 87 year old father became completely dependent on us. we never have even a day of peace together. My husband finally suffered a heart attack... A massive heart attack completely due to stress. We were only 50 then and I said enough is enough. We are not going to give up the rest of our lives to take care of my father who has long term care insurance enough to set him up in the nicest place weve seen. Club Med for seniors, but he swears that place is full of old people and he's not old. He refuses to go and continues to lean on us daily. mom spent the last three months of her life there and she was the happiest she had been in years. it's a tragedy we didn't have her in there before that. The money was there, my dad was allowed to spend the night if he wanted to but his selfishness kept her at home where she constantly fell on the hardwood floors. She was always bruised and bleeding because he was too old to take care of her, but he wouldn't let her go. The moral of my story is that I don't believe because we are born, that we should be expected to be endentured slaves to our elder parents later. I would absolutely do whatever I could for my husband, at this point the best thing I can do for him is to make sure that if I get really sick, I do not end up a burden to him. I'll do whatever I have to do to make sure that never happens because these last few years with my dad have ruined many aspects of our lives... Practically killed us both. I'm very sorry to hear about your husband. His story is all too common, so young, so sad. would you have done the same for an aging parent?? I must sound very selfish to you, but I don't think that's my responsibility especially after all we have been through. my hat is off to you for having been through it all and come out with a positive attitude. I find myself more depressed as time goes on because what little bit of life I may have left I'm afraid might be spent caring for this abusive dementia addled ghost of who my father used to be. I guess I am NOT a born caregiver. But neither do I expect anybody that I love to care for me. I would never allow my children or my spouse to be saddled with the unending nightmare that caregiving is. do you think if your situation was different financially, your husband would have allowed outside help to give you a break??after all even though you are obviously altruistic in nature you are also a human being. I'm happy you're keeping a positive attitude.. you must be a very rare bird...rare indeed. May God bless you and bring you peace and happiness which you richly deserve.
To Finished
God Bless You too and hope you can find some peace after ALL you have done.
Do you have an e-mail or phone contact??