Caregiver jealousy

Out of love and respect for my husband, I have written only surface level on this blog, and I haven’t posted pictures of him in the struggle, because I know he wouldn’t want that.

But today, I want to talk about jealousy. It’s been a really long week. I’ve tried to be a light, and my wick seems to have gotten too short. When I try pouring into others, I have tremendous setbacks emotionally, and I think it’s because I have tried to pour from an empty cup.

Anything I say about my husband in this caregiving blog, please understand, he is not the same person or personality. And I know we all go through changes as we age, but if what I’ve shared in this blog is new to you, it’s probably hard to understand. And, it’s equally hard for me to even put it into words, but I’m going to try. Because one of the biggest frustrations early on for me, was the feeling that no one got it. There’s one youtube channel, where the couple have posted about the husband’s journey and how he fell in love with her all over again. Let me tell you, that doesn’t happen often, if you dig deeper and go to Alzheimer’s message boards. I’m glad they had those moments. But, I’m trying to be really honest about my journey, so if you are starting or on a similar path, you know you are not alone.

“For better, for worse, for richer, for poorer, in sickness and in health.” We signed that contract to each other over 37 years ago. We’ve had our ups and downs, as every longterm marriage will have. But, when dementia comes into the picture, “for better for worse, sickness and in health” is tested to the extreme. I love my husband, but I don’t like him right now. And that will sound harsh, if you don’t know know who we are; maybe it will sound harsh no matter. But, I’m here to be honest and up front.

I would describe the last few days as feeling desperately lonely and in despair. It’s kind of like a wave that hits me every so often. I went on my nightly wander on our acreage, which I’ve been doing for the past couple of weeks. I walked 5.11 miles, trying to make sense of why I felt the way I did. I know I’m not the only one suffering or the only one experiencing loss. But, I came to the conclusion as I walked back to the house in the rain, that I was jealous. I know I’ve been fighting off bitterness like it’s the plague, but didn’t notice jealousy has snuck in. And, I never have liked how jealousy looks on me.

But that’s what it is. I am jealous of friends and family who get to move forward in their lives, jealous of sons who can make plans to be out of the house with ease. I’m jealous of our couple friends who get to be out doing couple things. I think I’ve even been jealous of my husband, who is at the stage now, where he doesn’t know what worry really is. I’m jealous of friends who can tell me ‘I’ll pray for you both’ and be able to go out and have a lovely evening with friends, while I’m here, hoping my husband will go to bed early so I can let down my guard, do a little work, catch up on some chores. And on and on it goes. I told you, I don’t like how jealousy looks on me. But, that’s why my tears have returned. It’s why I go out on my walks and find myself sobbing on the ground, and not even really knowing why. I’ve named one of our pastures, the “Why and Cry pasture” because that’s usually where I’m asking God why? and well, I think the other part is self-explanatory.

When I was a young girl, maybe 9 or 10, our family had gotten home from music lessons or something, and I was the last one in the jeep. The emergency brake didn’t hold and as I was draped across the seat, not wanting to get out of the car yet to go in the house, I heard the click, click, click, click getting faster as the vehicle rolled down the hill and into the back of my dad’s shop. I had gotten into the driver’s seat, but had never driven before and didn’t know the brake pedal from the accelerator. Plus, I didn’t know that the accelerator wouldn’t do anything if I pressed on it. So, I rolled with the car until the building stopped it. I didn’t feel too shook up, at the time, but mom and dad were. And, when everyone else went to bed, dad let me sit in the recliner with him, and he just held me. Friends, that’s something I miss, as a caregiver with a spouse who has early onset dementia, whose disease is manifesting itself with paranoia and delusions about me, along with the memory loss and executive function loss. I can be a pretty independent, confident woman, but that night in the pasture, I really just wanted someone to hold me, like dad had when I was a kid.

I’ve thought about that moment, and how that felt. And other times, when I was broken to the point of just needing to be held; not needing advice or any other words. Just held. My husband has been afraid to even touch my laundry, let alone me, for the last 2 years. And, I know that it is just what dementia has done to his brain. He would feel really badly, if he knew some of the things that dementia was doing to him. Six years ago, we were clicking on all cylinders and honestly having the best experience of our entire marriage. So, I’m grateful and very blessed that we had that time.

But now, for the duration of his disease, wherever that takes us and for how long it takes, I have to learn how to respond to the stress in a better way and learn to be okay, being alone. I’ve practiced solitude, and that’s not what I mean here. I mean alone, without a partner to hold my hand or hug me when life is overwhelming. And, I know that many have done it before me, and I won’t be the last. But, it kind of stings right now, in this kind of grey area where I’m married on paper, but a widow in my daily interactions, where once we were active with other couples and now we aren’t; where once I could pour into someone else, and now it’s hard to do that, even if I want to.

I’ve promised to share some light news and ways I have been learning to take better care of myself, so I am able to keep taking care of my husband, and not let this disease take me out as well. But, today, I wanted to share about jealousy. And honestly, I am in the process of working through it, knowing that it’s up to me to work on my mindset.

Love to you, if you are on this journey as well.

Anne