I think I can, I think I can……🚂❤️🚂❤️🚂

Being a caretaker to a chronically ill spouse is a role that demands resilience, empathy, and unwavering commitment. However, when my husband is difficult, fighting my efforts of helping him to get well, the emotional burden becomes significantly heavier. The experience of caregiving in such a scenario is overloaded with emotional, psychological, and physical challenges, lately it has led to a profound sense of isolation, emotional and physical exhaustion for me.

One of the most significant impacts of caring for a difficult, or ungrateful, chronically ill spouse is the emotional toll it takes on the caregiver. I feel like I often sacrifice personal time, work, and social interactions to provide constant care and support. When my efforts are met with ingratitude or resentment, it leads to feelings of insignificance and frustration. The lack of appreciation from my husband crumbles my self-esteem, leaving me feeling unseen and unappreciated. This is how I’m feeling at this moment.

The psychological strain of caregiving in this context is huge. Caregivers like myself may experience anxiety, depression, and chronic stress. The constant need to be vigilant, coupled with the lack of emotional reciprocity, can create a detrimental environment. I sometimes feel trapped in a cycle of obligation without the emotional rewards that typically come from caring for a loved one. This strain can lead to caregiver burnout, characterized by emotional fatigue, detachment, and a decreased sense of personal identity, I feel it’s heading there and don’t want it to..

In my case of taking care of my spouse, physically it is not that hard. It often involves managing most of the housework, which is severely neglected because there are not enough hours in a day. I am exhausted when I get home and still have things to do. Cleaning, shopping, getting gas, putting out the trash, shoveling the wheelchair ramp, cleaning snow off the truck, etc, trying to squeeze in visits with my grandkids and others on top of working 2 jobs. When these efforts are not appreciated, the physical exhaustion is compounded by emotional fatigue. Over time, I know this can lead to my own health problems. I already have a few health things going on, but they must take a back burner to his more critical issues. 

People are constantly telling me I have to take care of myself, to take care of him, I know that is logical, but at the same time, not as easy as it sounds. Certainly easier said than done.

The relationship dynamics between my husband and myself are complicated. The illness can and has changed the balance we once had, with me assuming a dominant role in decision-making and daily activities. I think this change has led to a little resentment from him toward me. I try to make suggestions on things he could try or remind him of the doctor’s or nurse’s recommendations and he immediately gets defensive and argumentative. Nine out of ten times my recommendations are the same as the professionals but for some reason, even though I have a background in health care and I educate myself, he can’t seem to hear it from me.  At the same time, I struggle with feelings of resentment and guilt toward him. It feels funny saying that because I don’t resent him per se, I mean it’s not his fault he is sick, but I do resent his attitude toward me at times, rather than appreciating that my care is keeping him home from the hospital he dreads so much, he says things like “get off my ass”, “you’re overboard”. I would back off, but when I do, he sleeps through when he is supposed to take medication, use his spirometer or have his oxygen level checked, doesn’t eat or drink enough, leading to nausea and dehydration.

I’m learning to cope with the challenges of caregiving for him, I’ve needed to develop strategies to protect my mental and physical health. Seeking support from friends and family, I imagine could provide a sense of community and understanding but I don’t like to burden others. I feel like after all these years of Mike’s poor health, they are probably tired of hearing about it. I don’t know of any support groups for the caretakers of chronically ill spouses but even if I did, I don’t know that I could find the time to attend. I’m trying to set boundaries, I know it’s crucial to prevent burnout. I know I need to recognize my limits and prioritize myself a little, it’s just not something I’ve ever really done. People continue to tell me to let them know how they can help, some have even said “what can I do besides pray?” I know they mean well and I know most would help, but I don’t know what kind of help I need. Some people may think praying is not enough, but to me, praying is everything. There is power and positivity in prayer. I truly believe with all my heart that nobody loves us more than our Heavenly Father, so yes, prayer is not only helpful, it’s necessary.

I’ve always believed communication is the best line of defense. I believe it can help address underlying issues of resentment or misunderstandings, but sometimes when I try to talk about my feelings surrounding his chronic illness, he makes excuses. There is never just a “sorry, I take you for granted”, or “sorry I am impatient with you when you’re trying to help me”  it’s always followed with a “but” or “well, if you didn’t do this, or you don’t get it.” Which is not taking responsibility, it’s dishing out blame or turning things back around on me. 

I’m guessing the ungratefulness may stem from the his own struggles with his illness, feelings of helplessness, or fear. I find myself being impatient with him and shutting down to a point. I just want to understand him better so that I can approach the situation with empathy, even when gratitude is not expressed.

Even though it has been over 20 years of dealing with the unknowns, the Ankylosing Spondylitis, all the other illnesses that have stemmed from the original diagnosis, the Guinea pig treatments, medications, side effects, allergic reactions, numerous infections, surgeries and unexpected procedures, loss of friendships (other couples who aren’t limited), financial strain and so many other things,  you’d think one would either get used to it but it is still a profoundly challenging experience. It requires strength, patience (which I lack a bit lately), compassion, love, commitment and faith. While the lack of gratitude can be disheartening, I realize as a caretaker I must remember the importance of my role as both a caretaker and a wife  and the impact my roles have on his quality of life. I’m going to try to find some support, maybe an online support group so it won’t be so hard to find the time to physically be somewhere. I know seeking support, setting boundaries, and practicing self-care, will help me navigate the complexities of my roles while maintaining my own well-being. Despite the difficulties, I would still not want to do this life with any one else. We drive each other crazy at times, but he’s still the man I love and the man that God designed for me. 

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9