How do you love someone who is dying?

“When someone loves you, they don’t have to say it. You can tell by the way they treat you.”

Unkown

I know what you guys are thinking…Wait! What? Matt’s not dying. You guys are so positive. You say he will beat this disease. There is so much coming for ALS in research and therapies. How can you believe he is dying?!
Easy. Last week he came a little too close to it for comfort. We let a cough go a little too long, it turned into a cold, flew into full blown pneumonia and at one point I was standing in the hallway outside his hospital room and the doctor told me I needed to prepare for respiratory failure and the measures they could take if that happened. Um, ‘scuse me?! It was a very long week with some time warpy moments where it felt like everything was being thrown at me really really super duper fast, least of which being my husband’s mortality.

I stared at him for about 5 days like this, except add an NG tube.

So guess what, Matt is dying. And he is dying faster than the majority of other people. There are people dying faster than him, but in a game of averages, Matt has outlived the average ALS patient. Fortunately, my husband has never been average. In fact, one doctor called his brain beautiful and exceptional, so that is a pretty ironclad medical diagnosis of extraordinary. Who needs second opinions?
Yes, we are absolutely optimistic and enthusiastic about everything coming out in the research community. And the drugs that are in trials right now look really promising. But as I have said, we don’t keep the rose colored glasses on all the time. Last week was a hard look at that. This disease is brutal. On Friday afternoon we picked up our brand new au pair in Chesterbrook, PA, and 12 hours later Matt woke me up saying he couldn’t breathe and to call 911. (I didn’t, I called his mom!) He was admitted to the hospital, in and out of ICU for the next 8 days. These upcoming therapies are not coming out tomorrow and today is all that we are promised, sometimes not even that. His mortality is something we have to face.

Welcome Alejandra Maria!!! What a first week in the USA.

We don’t live under a cloud of death. Matt is all around a pretty normal guy, minus the speech issues, loss of most motor functions and being confined to a wheelchair. He gets to the boys’ athletic and school events. He goes to the gym most days. He enjoys a beer and whiskey. Get a good rare ribeye in front of the man and it will be devoured. A hot fudge sundae with sprinkles, melted peanut butter and walnuts, topped with a cherry is his favorite bedtime snack. So although he has ALS, he is also living. A friend of ours has a song about it – some days he is getting by, others days he is living. No matter the type of day, I love him the best I know how.
I try to love this man without holding back. We tell each other multiple times a day that we love each other. I try to show him. I have outgrown my emotional teenage angst years and am not the most openly affectionate person. I show Matt love by getting him things I know he likes – ribeye for dinner, Smoothie King for lunch, kombucha when his stomach bugs him, matzoh ball soup when he has a cold. The man loves to eat. I show love through action. Almost every time I go to any store alone I look for a little something to bring back to him that shows him he was on my mind. To bring the world to him on the days when he can’t go meet the world.
I try to not show him my pain in this disease. As a wife, I miss out on a lot of the normal relationship things. I don’t show love for him through hugs and kisses and snuggles. Partly because it’s hard physically to do as well as emotionally hard. Also, it isn’t really “us”. Maybe it’s a good thing that Matt wasn’t one for PDA so it’s not something I miss as much as other spouses might. I wish we held hands more often before ALS. I know he knows that I miss our physical relationship – not like that, we made 2 kids after diagnosis – but the hugs and holding hands and kisses and generally being affectionate when it was the two of us. We used to do this thing we called “willy-wonka”. We would lay on the couch facing each other with our legs intertwined – like the grandparents in Willy Wonka – and watch TV or talk or read, just hang out. Lay in bed together and watch TV with my head on his chest and his arms around me. Now the weight of my head on his chest makes it hard for him to breath and we have yet to find a way to get his arms to stay around me, but we are still trying. I give him love by not showing I miss these things as much as I do.
I show him love by being his caregiver. I think both Matt and I can say this is not a role that comes naturally to me. I’m a constant work in progress with it. I have a short fuse that has hopefully grown. Being his arms and legs can be trying for me, especially if it was a rough night of sleep. I like my sleep. He is also about 50-60 lbs heavier than me and although I am strong, sometimes I have difficulty moving him. However, I know he is the most comfortable with me and he is not ready for outside help. When he was in the hospital he would have anxiety if he woke up and I wasn’t there. I guess I am kind of like his security blanket when we are out in the world. He knows I won’t let anything happen to him, unless I am the one to do it. My favorite thing is to give him a shave and a shower.
I love him by treating him the same as I did before he lost his physical abilities. We still fight. I still get really annoyed with him and let him know. I still pick fights with him when I am annoyed and then blame him. Matt is still in charge of our finances and I go to him if there is something I want and make sure it is in the budget. He still makes the final decision on the things our family participates in and where we go and how much we spend. He is still the head of our household in close to the same capacity as he was before ALS.

Back at home where he belongs.

You love someone who is dying the same way you love someone who is living. Our love is intense, complicated and very real. Like every married couple before and after us, it has had to adapt to the life we are given. There is not a way to fake love with this disease. I give him all I can of me and he reciprocates by giving his best to me. We have this family we built that has both of our hearts. I would not have that without Matt. I would not have this life without Matt, and as I have said, it is a pretty freaking great life. On the days this disease beats me down and I don’t feel loved or feel like loving, I remember I love him more than I love myself.

32 thoughts on “How do you love someone who is dying?

  1. Just the most beautiful eritten words i think i have ever read. The Bellina family is truly amazing. I know Debbie best through her long friendship with my wife Maria. Debbie along with Maria are the two most remarkable people i know. I met you only once but you to are amazing. God bless.

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  2. Caitlin, yours is a true love story ❤️. Your and Matt’s determination and dedication is truly beautiful. Your bond is undeniable. Michael and I think of you often and admire you both so much. Matt was just a baby when Michael and Jim served together in California. I remember how much energy and determination Matt had. Please know we will always be here for you guys!

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    1. I have been down this road … My husband was diagnosed with ALS. On Feb 7th 2017 at Ruby Memorial Hospital. In Morgantown, WV On the very first Visit.
      We went Back for 2 more days in a row for further testing .. By then he had advanced so far with the disease he wasn’t able to try the new medication that was available. He was put in a clinical study but after 2 more visits the Docors. Gave him 90 days to live. He passed on the 94th day …. We were married in between this time. So after 34 days of marriage God called him home. This disease is relentless.. God Bless anyone who has to stand by and watch their loved one fade away a little each day … Godspeed My love Kevin…. Till we meet again

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  3. Caitlin, I am Facebook friends with Debbie, so I always see your blog. I was diagnosed with ALS in 2013. We are older than you, we are in the grandparent stage, but I always show your posts to my wife, Lynn, because you could be writing about us. Your love, as does Lynn’s, shows through your acts. God bless you and Matt, and your boys. I am certain that these two Matts will be among the first ALS survivors.

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  4. Caitlin,

    I am moved by your incredible compassion and love. April 2019 was when we got the news. My wife is a nurse, so she knew what that meant. Through her own pain, she still shows me that unconditional love and sacrifice. By God’s grace, I am a slow progresser, and am in the NurOwn trial. Having her with me on trips from Ohio to California, her pushing a wheelchair through the airport, by my side through it all, gives me a peace and blesses me in ways that cannot be explained. Thank you for sharing, for stepping outside yourself to serve.

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  5. Keep going, girl. You could be writing my story here – I lost my husband to ALS in 1996 and I wish above anything else that a cure had been found so that the next generation – of people like you, or my kids – don’t have to deal with this horrible illness. Hang in there.

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  6. Caitlin
    Wow … you have a way with the written word… all those thoughts and feelings ring very true to me
    My wife 46yr old passed in 2009 from only a 18month battle with ALS.
    Our two kids were 6-9 at the time
    As a caregiver I did things I never thought I should could or would ever do in my life but I did… I did it for her !
    Thank you for sharing your feelings and thoughts
    Those would of been the same thoughts from me if I had your talent of written expression
    I wish you and your family all the hope for a peaceful and loving life and a CURE !!!!
    Thanks for sharing ❤️

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  7. My husband had ALS. Our journey was much like yours. I treasure those years we had getting closer in our relationship and making great memories. He was a judge and worked until 6 weeks before he passed. An incredible man. Never complained, never asked for anything. Like you I was his hands and legs. Best of luck to y’all. They have so much more going on in research right now. I pray y’all have the opportunity to make good on it.

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  8. Caitlin,
    Wonderful piece, you put down on words what so many of us our experiencing. The love will always prevail but I love your honestly that this journey is certainly frustrating with a young family ourselves, Caitlin 12 and Kiera 10, they have had to mature, see and experience things way beyond their years. I sincerely wish you, Matt and your boys many more memory making days! We all just have to old on a little longer.

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  9. I love you both and will keep you all in my prayers! Please come in for a facial on me!!!! Maybe when Trish does Matt’s massage we can coordinate!!!

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  10. Having walked in these shoes on the Horrific journey with Wonderful, Handsome Husband Michael😇 & I Being High School Sweethearts+36+ Years of a Love Story like Yours But also so Very different to read yours sounds like a much slower progression, Thank God….!! Michael‘s unfortunately was not Slow but progressed rapidly to Awful for him the whole time but We made it to the BEST we could & Tried to ENJOY every Moment & We Did!! I Cared for Him Solely & Loved him Unconditionally!! We Endured travel together & Continued to participate in a clinical trial in San Francisco with US flying every 3 weeks from San Diego( You can only imagine The Horrific obstacles we Encountered & Endured Going through Airports TSA Stuff & in a Power Wheelchair, totally quadrapelegic, O2, all the equipment he needed & Lithium Battery etc. etc. No speech So I had to guess,check List to give him the Best Care I could & all the while barely any sleep for 1yr & 5 months….Couldn‘t find a Special vehicle for Power W/Chairs etc. bc of the Huge Demand, unfortunately so had to rent them..Michael😇 Had just started a New job also so all that being in a new place w/o Loved Ones, not knowing anyone & trying to Navigate there trying to further the Research for a Cure for Loved One‘s like your husband. Good he can still make money decisions, where mine couldn’t & have young kids is challenging as well. Know they Are a Blessing ..!!! Once clinical trIal over a year later we returned to Indiana to be in closer proximity with the Grandkids. Which Michael Loved so Much & Proud of & the little kids crawled around his hospital bed to be close to him & Despite All the Awfulness, God Left Him with the few muscles in his Face, So he Never lost his SMILE & his Brilliant mind As a Dr./ Scientist/Plant Cell Biologist always trying to find cures in plants & Better foods… Just celebrate Anything & Everything!!! 🤗❤️. I certainly Miss him being able to Hug me etc,etc. Etc. I still held His hands all the time ( like we always did for 40 years) & Massaged his hands & Legs to try & keep the strictures at bay. So DO Any & All things & Laugh & Live & Cry & Be Silly joking helps them & You!! Prayers & Hugs To You-Caitlin & Matt & all your family. Keeping doing & Keep Hope alive for the Cure!!🙏🤗❤️😍🙏💕🥰🙏✝️❤️😢🤗

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  11. My dad was diagnosed with ALS in January of 2019. Since then, he has continued to push himself to be as normal as possible. And, like your hubby, he does so through slurred speech and affected mobility.
    I admire him, but I also admire my mom, his caregiver and wife, who puts on a strong face every single day, and makes the best she can of each day they have left together.
    I hope you have the best of the days to share with your love – as I wish for everyone with this awful disease. It takes the best of us – and we have decided that it is because God needs our dad more than we do. Until then, we will cherish each dad joke he tries to tell (sometimes his PBA gets him laughing before the punchline), every bit of wisdom he imparts, and every memory we are allowed to store. Thank you for this story – it helps the rest of us to know that we’re not alone in this journey. ♥️♥️

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  12. I lost my husband, Brad, a year ago after 4 tough but treasured years. Caring for him was very tough physically, with no sleep for last 2 years, but still I felt honored to be able to do it for him. He was always thankful for his life, kids, love around him and always stayed positive. If you ever need to talk with someone who has walked your walk, please reach out on FB. Rachel Dechario McGowan. God Bless you guys!

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  13. Caitlin, you are a fantastic writer. You are someone who shares your love story with Matt so beautifully. I am honored to know you both as you are an inspiration to what true love is! God bless you and Matt as you journey through. We love you all. Ms.K

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  14. Bulbar Onset ALS = elderly man had great results with a combination of a strict gluten free diet, no sugar and supplements, he did our a hair toxicology test that showed he had 3 heavy metals in his system and a deficiency of iodine and potassium. He is now using a feeding tube formula called, ‘Liquid Hope’ made of organic food, green juices, ingesting 8 oz of coconut oil per day, msm powder, vit c, and added filters to all his water sources.

    Antisense Oligonucleotide Therapy

    https://www.earthclinic.com/cures/als-natural-treatment-supplements.html
    http://www.alsforums.com/forum/general-discussion-about-als-mnd/224-homeopathic-treatment.html
    http://homeopathyplus.com/motor-neurone-research-findings-homeopathy/ https://healingchronicles.com/tag/cure-motor-neuron-disease/ https://www.biosciencetechnology.com/news/2014/06/copper-compound-extends-als-lifespan-mice

    below link is just page 8 out of 18 pages of info on alternate treatment for MND from Ted of Earthclinic.com (this guy is a genius)……..

    http://ted.earthclinic.com/cures/als-natural-treatment-supplements8.html

    LOW DOSE NALTREXONE (LOWDOSENALTREXONE.ORG)

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  15. You guys are amazing. You may not believe this, but I know Matt will. I talk to everyone about Matt–he is the definition of a man. I learned more from Matt in two years working with him than the other 15 combined. Matt taught me so much about how to handle stress. He is mature well beyond his years as you know. What an awesome wife–such sweet, real words. Your whole family is awesome and I am blessed just to be a long distance friend, I don’t have social media and don’t frequent the internet beyond Fox News (MAGA)…However, not a day goes by that I don’t think about my yall.

    God is Great. Beer is Good. People are crazy.

    -Scott

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