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My Grief Story

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My Grief Story - ALS, Caregiving, and COVID



My story begins a little more than four years ago when my wife of 16 years and I first heard the letters ALS uttered from a doctor's mouth. She was 47 years old at the time, healthy, we both worked in a Government Office in the same building, and we were raising a 12 year old daughter with a 26 year old step-daughter (hers from a previous marriage) and a 1 year old granddaughter. Those words hung over me with an unimaginable weight. What brought this on was about a month earlier she began slurring her words. Before that she had experienced arm numbness which was diagnosed as Carpel Tunnel Syndrome. So what followed was three months of MRI's, blood tests, and nerve conduction studies with me at every appointment. During this time, the slurring got worse and she started falling including falling getting into an uber on vacation and, luckily, just missing hitting her head on the pavement. 

July 20, 2018 That is a day I will never forget. I was working offsite and my wife was at work. The day before she had her nerve conduction study where electrodes are connected to her to send electrical shocks through her nerves to determine if they are working correctly...at least that is how I understand it. I get a call on my cell phone. It is my wife...she can barely get the words out...."I need you to come get me...the neurologist called". I knew what was coming. I knew from the time I heard the words ALS come out of the doctors mouth three months earlier and now I was no longer going to be able to Google her symptoms hoping to find something else. The diagnosis was confirmed. She medically retired immediately and within 6 months was unable to walk, talk, feed herself, groom herself, or bathe herself. During this horrific transition her frustrations became directed at me. I was there and I could do all the things she couldn't. So what am I so upset about? That is the reaction I got combined with being called stupid and told daily that she hates me. 

So after three years of this with having to move from a two story to an apartment that costs mor money, getting almost no sleep, little help from family, and going deeper into debt paying for a caregiver to come in while I work but then having to take over caregiving nights and weekends; I had to stop. Pleading for help got responses of "Maybe you should get a second job to pay for more caregiver time" (sister-in-law) and "Can't you just deal with it for a little longer? She doesn't have much time left" (Brother in Law) so I had to make a decision to separate in hopes she would accept going to a place where she can get the care she needs. Also, I was on a path where my daughter was going to be an orphan because it was killing me. Result of that is I was called "coward" and told I was violating my marriage vows. 

So here I am 4 months later. June is going to be a tough month because my daughter's 16th birthday is on the same day as what would've been my 20th anniversary. I am realizing that a big part of my grief....sadness...is that I probably won't get the ending that I hoped for. That I may not get the opportunity to say goodybe to someone who I was in a relationship with for 22 years or be a part of the end of her life. I am financially broken and sad...but I will make it through


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Dear Nickwei,

First of all, I am truly sorry for all you have been through with your wife. 22 years is a long time together. 

What a terrible diagnosis ALS is and my heart goes out to you. I can't imagine the exhaustion, stress, hopelessness and depression that would go along with all of that. 

You have done all you can for your wife. You have nothing to feel guilty for.  She is ill yes, but that doesn't mean she is allowed to abuse you. Her life is ending and as sad and terrible as that is, you still have a daughter and a granddaughter to think of. You're not breaking any vows by doing what's best for her. And there is such a thing a self-care and looking after yourself as well.

People are great at giving out advice, aren't they? Not so great at offering to help, am I right?. I went through that when I took care of my mom. You did the right thing and your wife can get the proper care now. 

You would have become ill yourself carrying that burden. So easy for other people to judge when they are removed from the situation. 

I'm so sorry your wife lashes out at you. She is angry, which is understandable, but she's also wasting precious moments which could be quality time with you. 

I don't know if there's a support group out there for people who've had to put their partner in a care facility? An acquaintence of ours went through this when his wife got Alzheimer's. People judged him for having a girlfriend while his life was still alive. But he was devoted to her until the end, saw her daily etc. He had to move on because she was vegetative for years. Life is too short. 

I hope when her time comes you're able to be there to say good bye and get some type of closure. Thank you for sharing and I am thinking of you. Peace to you. Xo

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