I don’t know where to begin. I mean that with regards to this post and life in general. I lost Rosann, my loving wife of 30 years this past January. She was 61 and had ALS. She started developing odd symptoms early in 2016 that were not thought to be connected to ALS but looking back probably were. In late 2016 she started to slur her speech and have difficulty swallowing. It wasn’t until she started having trouble walking that the final diagnosis, we all dreaded, came. I could go on for pages about how cruel this condition is, how difficult it was to cope with all the challenges, physical, emotional, small and big. Trying to figure out how to make her as comfortable as possible each day but let me just say it was all consuming and totally devastating. In the end all she could manage was to move her eyes. Thanks to the ALS Association clinic they arranged for an eye gaze device that monitored her eye movement and spelled words as she looked at letters on a computer screen. It would then speak the words for her. I’m very grateful for their help. This device was her absolute lifeline, the only bit of independence and connection to her old world. There were so many challenges but one of the hardest for me was to lose the ability to have a meaningful conversation with my wife. The eye gaze device was a blessing but it only allowed for basic communication and daily essentials. A few years before Rosann got sick we found and purchased our dream home. We fully expected to live out a long retirement together. As her illness progressed I had to move her out of that home to get her better care. It broke my heart knowing she would never see that house again. Since Rosann has passed I feel lost and drifting about, having difficulty doing everyday things. We never had children and my family is mostly gone so I’m having to adjust to a completely new existence. I have to find a new focus after spending years totally consumed managing her care and losing my partner in life. It’s an abrupt shift to make and I’m not doing a good job at it. I hope it gets easier, I miss her every day. I don’t know exactly why I’m writing this. I thought perhaps it might be therapeutic to write a little bit of Rosanns and my story. But more importantly I hope that someone who may have experienced a similar situation will read this and realize they are not alone, even if it feels that way.
Hi Bart. Chuck, my husband of 28 years, who died in Dec 2019, also became severely disabled towards the end, although his mind was still lucid and he could still talk and reach for things himself. I cannot imagine being unable to move anything but my eyes or have to watch my spouse suffer that way. I am truly touched by your story and heartbroken for you and your wife. Thank you so much for sharing. In some ways, I really identify, having been overwhelmed by the sheer amount of work required to care for another person with severe mobility issues. Were it not for technology, it would have been far worse, but that doesn’t mean that it was easy either. And his medical condition kept changing and I’d have to scramble to adapt. Chuck and I really didn’t have much to say to each other after 28 years. We just liked being together, and would often communicate with little more than grunts or baby sounds. There wasn’t much that was truly meaningful that we couldn’t communicate with just a look. And despite his discomfort and pain, I think he appreciated that I didn’t avert my gaze and was there with him, living his pain vicariously through him. Like you, we bought a house and spent a lot of time making it our own, thinking that we would spend a good few years in it, but it ended up mainly a struggle to keep Chuck alive. And now that he’s gone, it’s impossible to regard anywhere as home. He was home, and he’s gone. His ashes are as close as I’m going to get to having a home. And like you, we had no children, and I withdrew from my social circles to reserve my energy to care for him, so now I’m left virtually alone in my grief. And I simply don’t know what to do with myself now that I no longer have to do the multitudinous tasks required to care for Chuck. Nothing really sparks my interests. I’m just going through the motions of being alive. Although it’s painful to read your story, it does bring some level of comfort to know that my situation is not unique, that someone else out there is also struggling through the same human condition.
Hi Edj Thanks for your reply. I’m sorry you had to go through a similar experience with your husband Chuck but I can tell from your kind words that you truly understand. So much of what you mention rings true with me. I wish I had some good advice how to cope with the new reality but honestly I don’t have a clue. At this point I’m just trying to figure out each day hoping that there will be peace at some point. I hope you can find some peace too.
Your presence is all that is required, and it is appreciated. As someone told me, there’s no out, just through.
Bart, very sorry for your loss. I am the last person to tell or respond to anyone on how to grieve. But , in some of your feelings you shared, I can understand the loss of losing someone you love dearly..I lost 2 people who meant the world to me almost 2 years ago. Life is not fair sometimes.I lost my Dad first, then 3 weeks later my Mother.All I know is one thing thing I think we all have in common is, we are human, we all have had hearts that have been broken. But, I think they maybe with just listening to another, whether it be sad or a happy day, that we all hurt the same hurt ,,,a terrible loss.I just wanted to reach just to say how sorry I am and if u just wanna yell , cry or scream,,, I am a good listener.
Hello Bart. So sorry to hear of you losing your Rosann. Your story touches me as I can relate so well to not being able to talk with my sweet husband. He had cancer of his tongue and 15 months before he died they removed over half of it and so lost his ability to speak or swallow. The constant care with tube feedings, dressings, etc was difficult but not being able to have a conversation was torture. Our social lives are so based on eating and drinking that friends just didn't come over or extend invites. He could write notes but like you say it really only covered basic necessities. It was 2 years yesterday since our last conversation and was 9 months on the 11th since he has been gone. Time is helping. Some days are really ok. Others it seems all this effort to be strong, to get on with living, is for nothing. I sold our motorhome last week. We had it for 24 years and spent so much time having wonderful adventures in it. But it was old and I was not willing to learn how to be a mechanic at this time in my life. Now the yard as well as the house is so empty. But I must keep going...Mike had me put his motto he adopted when he had his huge surgery..."Life has changed, not ended" on his gravestone so that every timeI visit I will remember that he wanted me to adopt that motto as my own when he was gone. Take care.
Hi Ainie, Your story hits home, It’s so difficult losing the ability to communicate at a time when it’s needed the most. I can understand your struggle, Rosann was on a feeding tube for about two years. It was another hurdle to overcome but it didn’t stop her from her beloved morning coffee. She insisted we continue it even through the tube. Thanks for sharing your husbands motto, it’s true and a good way to look at life especially now.
