Feeling cheated

You've come to a great place to share your experiences and get some good support. I hope you can find a way to address this before the depression really settles in.

What worked for me was to tell my husband there were things I needed to do but I was so worried about him needing something while I was out that I was letting things go. Like, the doctor wants me to get out and walk to bring down my weight, cholesterol, blood sugars, blood pressure... whatever. Or, I really need some new shoes, bras, slacks, and it takes time to really shop. Once we found the right person to be a companion/ caregiver he was fine with me leaving. I found that the best fit for my DH was an older woman who felt more like a friend than a caregiver. He actually looked forward to her visits and I could meet friends for coffee and he was good with that. Just know that it can take some time to find the person who is a good fit. I gave up a couple of times, then tried again. Don't give up. I stayed home at first, then did quick trips to grocery store, gradually increasing my time away.

I'm sure others will have thoughts that may help you. Wishing you well as you navigate this ugly disease.

the "feeling cheated" part.
Feeling cheated is based upon one's own personal expectations of how their life should go and what they are entitled to. Life may have other overriding plans. So when you expected strawberries, and Life gave you brussel sprouts, you feel cheated. Life doesn't care . So maybe our only alternative is to become realistic or more flexible about our expectations? Or drop them altogether, and deal with whatever comes.
note: I expected Brussel sprouts, and got strawberries - this time.

@jehjeh
Thank you so much fir the warm words and good ideas!

Hi,
This is a hard thing for you to go through. I know because my husband had lung cancer, not dementia but he needed my help all the time just like your husband needs you. I didn't want to leave my husband alone either and only went for necessities such as groceries etc. Many things can be delivered. I didn't want any outside help simply because you don't know who you can trust these days.

Your husband is probably feeling scared and realizes something is different about him and can't actually understand what it is. My husband felt that way also. It's hard to not get depressed as you said but your husband needs you more than ever. I don't mean to sound harsh but he won't be there forever. I know because my husband died in 2024. I am so glad I spent the time I did with him. Now I have all the time in the world to do what I think I need to do; shopping, take a walk etc. and I just wish I had him back. I miss him terribly but I know he's up in Heaven and out of pain. We'll be together again in God's time.

Give all your problems up to God and let him handle things for you and he will. God helped me and my husband a lot and God is still helping me get through a very sad and lonely time.

If you have any questions or just need to talk, I am here. I have a lot of time these days. I'll say a prayer for you and your husband. It will be OK. God will see to that.
I wish you the best.
PML

@pml
I can’t thank you enough. You’re right in so many ways. I think I just needed to hear the words from others that have had similar experiences, like yourself. I’m sorry for your loss. I can see you had a loving relationship and that is something to hold on to until you’re together again. And I do need to look to God for comfort…sometimes we forget.
Thank you again.

@shmerdloff
I’m happy about your outcome!
I know I’m being selfish..hence the guilt. If I were younger, I’d rely in the fact that this isnt forever. I’ve been going through this for years and can’t help but feel this is just how my very last years will be spent. I’m very active but pretty much housebound now and it’s just wearing in me.
Sometimes a little tough love is a good thing. I appreciate your honesty. Thanks for caring and for replying.

I think most all of us feel that way in the beginning, but as time goes on we come to realize we need more. It does me so much good to have some time to recharge. My husband is still able to get out so he goes to a respite program at a local church twice a week for 4 hours. That time has helped me to take care of any errands that need to be run, or give the house a good cleaning, or if I need it just some quiet me time. I feel better for it and I have found that some time out enables me to be a better caregiver to my husband. When the times comes that he can no longer go to the respite program then I will find some help to come in as needed. As caregivers, we have to take care of ourselves mentally and physically, so that we can take good care of those that we love who are depending on us.

@bellaskye25
No need to feel guilty about feeling guilty/selfish. Normal human reactions.
We are not all Mother Theresa.

Hello:
'Cheated out of my own advancing years', yup, I get you.
I am younger than my husband and decided to retire when he did, so we could enjoy retirement together.
'The best laid schemes o' mice and men often go awry' to paraphrase poet Robert Burns.
I am, I think, coming out of my angry all the time phase (though I am human and sometimes it rears its ugly head).
For me, taking caregiver classes and working to stay educated so I can better deal with my husband's behaviors, has cooled the anger a bit. Frustration still lingers all the time.
I hope you find what works to ease your anger and frustration.
All the best. 🥀

I can identify. Exactly.