Off we go again! How do I keep my sanity and stop resenting him?
Long story short, I spent 5½ years caring for my dad, who had frontotemporal dementia after a brain meningioma. I do not need to tell anyone here how tough that road is.
Now, unfortunately, it feels like I am back in the same race again. 😞
My husband had a stroke four years ago. There is a strong family history with two of his sisters having had severe strokes and are in assisted living with one declining quite rapidly, two of his brothers passing away from strokes and a heart attack. After my husband’s stroke, he could no longer hold a job. At the time, I was so consumed with caring for my dad that I did not recognize the signs in him.
Fast-forward to last year: I started noticing signs of cognitive decline. He insisted he was “cured” and stopped taking his medications. After many fights, I finally gave up trying to convince him. The warning signs were there, double-buying expensive items, losing things, forgetting conversations.
This year, things have clearly worsened. He still knows who I am and recognizes everyone, but his short-term memory has declined sharply. He does not see it himself, even though he has begun getting lost in unfamiliar places. The good news is, I finally got him to agree to see his doctor.
My question is: how do I keep my sanity and stop resenting him for something that might have been delayed if he had stayed on his meds? I am the “flight” type by nature, when things get overwhelming, my instinct is to run far away. Of course, I will not leave him. We have had so many wonderful years together, and he supported me through my dad’s illness. But I will be honest... I am not sure I was ready to face this battle again so soon.
Any advice or encouragement would be deeply appreciated. ❤️
I went through something kind of similar....5 years being the sole caregiver for my husband after his 2 strokes, then I finally saw the light and I hired agency caregivers into our home 6 hours a day. This helped somewhat in the short term but I was still running ragged from exhaustion. My husband has some evidence of dementia but it's not a overpowering issue yet.
What *saved me* was consulting with an Elder Law Attorney and following his guidance... getting our advanced directives and wills in place, and separating our finances in the most beneficial manner. When that was done I moved us both into an assisted living facility that enabled us to live together in a spacious 2 bdrm/2 bath apartment. My husband gets daily ADL assistance for everything. And we can be together and I'm not exhausted now. The facility we live in also has a Memory Care unit but we don't need it at this point.
BUT I'm old(ish), in my late 70's (husband is in his mid 80's) - not sure what stage of life you're in and what solutions may be best for you. Sounds like you're both still living at home and that you're not elderly yet.
Regardless, start off by consulting with an Elder Law Attorney and get things in place as much as possible for all contingencies. The short answer is that husband may need to move into an assisted living facility or a memory care unit facility. An Elder Law Attorney consultation would make your options clear and simplify the process of getting from point A to point B.
I hope this is helpful and wish you the best.
Hello lost in place. The person bkgranny in the link I just inserted has a question for you, if you could find a way to answer her separately from this post that would be very kind of you. Her post is an hour or so later than your reply.
Here's something to consider: IF he stayed on his meds and IF it actually delayed the progression of his decline, you'd be an older caregiver. I think it's safe to say that you have more energy (mental and physical) now than your future, older self. Yes, I'm trying to put lipstick on a pig here.
I'm so sorry that you both have to go through this. I personally get whatever strength I have from God. On the mornings I get up feeling that wave of anxiety wash over me I pray and then allow God to take over my burden. I literally shrug my shoulders, throw up my hands and say, "Oh well Lord, you're just gonna have to deal with it cuz I can't." I make a mental and spiritual transfer of the burden picturing myself literally handing it over. Then I go about my day the best I can.
May you receive the peace that transcends understanding.
When my late husband had his massive stroke at the age of 48, I remember his neurologist telling me then that my husbands chances of developing dementia down the road was now much higher and to perhaps be prepared. I heard him but because we both were so young I didn't give it much more thought then although it was always in the back of my mind.
Fast forward to about 18 years later and I started noticing little things just like you are in my husband forgetting how to use the microwave, use the remote to the TV, and even occasionally how get out of the shower.
It was about a year later that he was diagnosed with vascular dementia which is the most aggressive dementias of all with a life expectancy of just five years. He was diagnosed July 2018(though he had symptoms a good year or more before) and he died Sept. 2020.
Your husbands brain was damaged with the stroke and it sounds like that damage has now caused his dementia, and sadly there is yet no drug in the world that can stop it or prevent it.
I'm sorry you're having to go through this but I'm here to tell you that you're stronger than you know and when it's all said and done you'll come out of it even stringer, and have much more compassion and empathy towards others.
God bless you as you travel this difficult road with your husband.
You can be sad and mourn. Nobody expects this. And, it is sad to lose your loved one mentally. My husband, overnight, went from smart, hard-working, strong, just finished a 100 mile motorcycle ride with friends that day, to being unable to stand, walk, talk, eat, is in diapers, can not use the TV remote or a phone. It was devastating! I cried so many times! I prayed, I begged to have him back.
11 years later, I have learned to accept that this is our new normal. I still love him, and he still makes me laugh at times. I hate this! I never expected our lives to be like this! We are guaranteed nothing, and I accept that this is part of my journey. BTW; you can run. It probably won't help much. But you can leave and let him deal with this on his own.
I am happy that I am still able to spend time with my husband, even though he is like a demanding child. I try and get help when I can. I take breaks and try and remember to take care of myself. A sense of humor really helps.
Thank you for trusting us with all of this. Reading your message, my heart just aches for you. You have already walked such a long, hard road with your dad, and now to find yourself facing something similar again with your husband — that’s a lot for one person to carry. Anyone in your position would feel overwhelmed.
First, please hear this clearly: your feelings make sense. The exhaustion, the sadness, even the resentment at times — none of that means you love him less. It means you’re human. Caregiving is incredibly demanding, and it asks more of us than we ever think we have. You’re not failing; you’re responding to something genuinely hard.
I also hope you can be gentle with yourself about the medication piece. It’s so easy to look back and think “maybe if…” but hindsight always feels clearer than real life. You did the best you could with what you knew and what he was willing to accept at the time. You can’t carry responsibility for every outcome.
If there’s one thing I’d encourage, it’s making sure you’re not doing this alone. Even small bits of support — a support group, respite care, a friend who sits with him so you can get out for a walk or coffee — can protect your sanity more than you’d expect. You deserve breaks. Taking care of yourself isn’t selfish; it’s what makes it possible to keep showing up with love.
And when you feel that “flight” instinct? That’s your nervous system asking for rest, not abandonment. It’s okay to step away for a few hours or a day and recharge. You’re allowed to breathe.
You have already shown so much strength and devotion. The way you cared for your dad, and the way you’re showing up now, says so much about your heart. Your husband is lucky to have you — even on the messy, tired days.
We’re here anytime you want to talk or just vent.
Sending you a big hug.
You didn't expect your retirement years to be so screwed up, and you can't control it, so don't blame yourself! You know the road ahead is going to be hard and don't want to face it. I sure as hell wouldn't want to. It's hard when you used to look up to these men, then they become weak and helpless, and it's frightening and frustrating. I totally get it.
How are you, so far today?
You have said" " At the time, I was so consumed with caring for my dad that I did not recognize the signs in him."
At the time, you were not a doctor or a medical professional.
Even so, it has not been my experience that doctors can predict a stroke either.
So, I am asking one thing on your behalf, that you don't go there in your mind that you are or were responsible for detecting the stroke. (and many other things that you are not responsible for.)
Instead of "flight", I suggest you deliberately start backing away, a little each day, and turn over his care to others. The professionals will guide you and hubs to a place of decision making that can lead to the best care for you both. Start with getting household help just so there will be someone there (a witness).
You are right, you are in a fight, a battle again. I encourage you to stop all self criticism and do what is necessary for your own survival. Daily.
Daily, when a simple conversation has anyone raising voices, arguing, being accusatory or unreasonable. please walk away, leave the room, step outside,
excuse yourself to say you'll be back (but you don't go right back). You'll learn to feel it in your gut, or your b/p raises, your heartbeat gets faster. That's when you end the conversation because it is not good for you, and not good for him.
You will be making decisions, without his input. That's okay.
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