Facing the Pain of Dying Younger

Carlos Briceño avatar

by Carlos Briceño |

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telemedicine, positivity, religious beliefs, scooby-doo, empty nesters, food, involved, walk, caregiver, denial, family, love, hugs, realities, family time, courage

I saw a pig fly the other day.

OK, that’s a lie. But it sure felt like one did because my wife, Jill, cried. It’s rare for her to cry. Crying makes her feel worse than whatever made her cry in the first place, so she tries to avoid it.

For someone living with Huntington’s disease, a terminal illness, Jill is remarkably composed. She has this incredible ability to accept whatever curveballs life throws at her. As a result, she lives with peace and joy. Does she get sad at times? Of course. But for the most part, Jill lives as she normally does: full of humor, love, and care for others.

If anyone has an excuse to make life about herself or to break down more often because of stress or anxiety, it would be Jill. Everyone would understand. So it shocked me when I saw her break down the other day.

We had just finished grocery shopping at Walmart. Jill told me on our way home that she had talked to a grandparent earlier that day. He shared some typical stories you might associate with grandparents. It hit Jill that she would not experience any memories as a grandparent — something she couldn’t share at the time because she didn’t want to cry in front of him.

As it stands, no cure exists for Huntington’s. And the life expectancy for someone with Huntington’s is not long. At an educated guess, Jill has 15 to 20 years to live, which means she will probably die in her 50s.

All of this weighs on a person’s mind. And it flashed through Jill’s mind while conversing with the grandparent at her job. When Jill shared this with me in the car, it hit her so hard that she started to cry — which, of course, made me cry.

It’s sad to think about it. In a country where the life expectancy is 78.7 years old, growing old means that, if things were different, Jill would live to be as old as a grandparent.

Jill’s reaction was to be expected.

As Jill’s caregiver, I’m learning to be there for her. So I cried with her. I listened to her. I offered my hand, squeezed her neck comfortingly, and hugged her when she arrived home. I told her it was OK to be sad.

After I wiped away my tears, I thought, “I hope there’s a cure one day, but if not, I will always be present for her, listening, loving, and comforting.”

This thought gives me hope. I do not doubt that my constant presence gives her hope, too. We won’t dwell on the thought that Jill probably won’t live to be a grandparent. Our love for each other will define her future.

***

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Comments

Patricia Treffry avatar

Patricia Treffry

Thinking of you both with warm thoughts and much Love keep going some times there are no words to say! A couple of years ago I bought my Darling husband a pice of wood! It said we may not have it all together but together we have it all! Hold on Loves!❤️🦋🌈 the HD lived with us for 14 yrs and 4 months! So in my ❤️ I know we're you both are and you will get through this together because we did. xx

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Carlos Briceño avatar

Carlos Briceño

Thank you for your beautiful sentiments. It sounds like you and your husband had an amazing relationship. What a blessing! My wife and I are grateful for every minute, every moment, every day together. It sounds like you and your husband did too. Thank you again for writing.
Carlos

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Anne Loncher avatar

Anne Loncher

My beautiful cousin is in the end stages of this illness. I hate what it has done to her, but I cherish her spirit always. Her brother is a couple years into his journey through the darkness of this path. I hope following in her light will be a blessing to him though it all.

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Carlos Briceño avatar

Carlos Briceño

I am so sorry to hear of your pain at what you have witnessed about your cousin's illness and the suffering she has gone through, along with the suffering of her brother. This illness is so devastating, especially to those who are related. Thank you for sharing.

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Jodi Ream avatar

Jodi Ream

I would like to give you some Hope by telling you that my mother-in-law is 83 years old and alive and kicking yes she hads Huntington's disease and some days are worse than others but for the most part she she's doing fine. she takes a drug called tetrabenzene on a daily basis and because of this drug she is able to live a somewhat normal life. She was diagnosed at the age of 50 years old. I hope this gives some of you guys hope knowing that it has been 33 years since her diagnosis and she is still going stong. She does have some difficulty speaking but I can usually understand her she loves to eat pizza Chinese and Burger King. She does need help getting dressed and getting showered in the morning but other than that she feeds herself and uses the restroom herself too. she has trouble walking and can't live alone but she enjoys her grandkids. I hope this gives someone hope for a brighter future! With a lot of love and the proper care someone with Huntington's disease can definitely live for a long time much longer than the doctors predict.

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Carlos Briceño avatar

Carlos Briceño

What a wonderful story! I'm so happy to hear about this. Hope is such a wonderful thought when it relates to a terrible illness. Thank you for sharing!

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