u/PrincessVine

I just had 2 1/2 days off...my MIL had my husband over while I was gone. She brought him back early again this time after we had agreed on a time that I woukd pick him up from her house.

I came back early so id have a little more time by myself before I went to go get my husband but he was already home.

Im sure MIL got tired of taking care of my husband...I of all people knkw how tiring it is.

I am feeling despair since returning because while gone, I realized how much I felt like a human again, instead of just a caregiver.

Like, I actually had FUN! and relaxed!

I came home to immediately feeling dread of everything I have to do, and hopeless that I will never have a normal life again.

Im only 49 and husband will be 52 next week.

To think that i will never just get to be a WOMAN and enjoy just living again, is making me sad.

Ok, I am asking for some real answers. I have posted about this before but now I REALLY need answers.

My husband has cognitive decline. About a year and a half ago, he had some ED issues, related to all the problems he was having physically.

We have not had sex since then. But previously he wasnt in the mood at all.

Since being his caregiver, I have NO desire to be sexually active with him...his cognitive issues have made him like a child and it is not even remotely anything I want to handle.

However, he regained his sexual desire and now he wants to have sex.

Last night he talked about it for a long time...he understands enough to know he wants to have sex, but he doesnt understand that he is like a kid now, and why that is a turn off. Even hugging or kissing is like a kid would do, its just yucky!

I have tried the distraction tip...that seems to be the only tip offered in anything you read about this topic...or non sexual intimacy.

Well my husband is not being dissuaded by those things anymore!

I dont know what to do anymore!

I doubt that a dr woukd prescribe a med to lower the libido because my husband isnt acting out in bad ways.

My husband looks so sad when I gently say no, but again, its like a kid. He doesnt understand WHY I dont want to have sex, I do use one of my health issues as an excuse as well and thats what he thinks is my reason, but he is very sad that we dont have sex now.

But I am seriously NOT going to have sex with him, it wasnt good right BEFORE he got to this point of decline, and now it would be even worse, like I said, even hugging or kissing is off putting.

Please help! I need answers ASAP!

Has anyone had this experience with being a caregiver, that you find yourself to be NOT a member of your spouses family anymore, but literally a Caregiver...you become invisible at all the family gatherings, nobody asks you questions anymore to see how you are or what youre doing.

It's what has been happening to me over the course of me taking care of my husband. And this week I have noticed it a LOT when ive been around my husband's family.

We had a family gathering this week and I am not exaggerating when I say that I was not included at all in the conversation...even tho I did speak up to try to join in. Everyone just kept talking to each other...so I sat back and just watched...like i was watching a tv show. It never used to be that way.

Then yesterday I was again at my MILs house to decorate for our nieces wedding shower, which is today.

It was the same thing..MIL talks to me like I am not related...she was very nice and cordial to me, but i am a Caregiver to her, not her daughter in law anymore. Caregiving was all she talked to me about.

It is a marked difference that I have been aware of since this started.

And Id say that since I have been married into the family for 29 years, I have never truly fit in, I am not like them at all, 😄 it's a definite shift from how they responded to me in the past, than they do now.

My husband, even tho he has cognitive impairment, has noticed the change towards me as well. Its so odd!

But you know what, im actually not mad about it, it makes it easier to just be the caregiver to them, to be more of a silent observer than an active participant in the family. Its not been easy for me to be ME while in the family, so now that they don't care whats going on with me, I feel kind of more free to not conform to what the family wants.

My two retired friends who have seen what goes on as well, have mentioned that they think the family is just glad to have someone take care of my husband so they dont have to and can continue on living their lives how they want to.And basically thats why I was kind of picked to marry my husband. Back then I was super shy and awkward and had no idea of what I wanted in life, or who I really was.

Back then my husband was higher functioning than he is now. I didnt know anything about cerebral palsy when I married him, (which is what he also has) and his family portrayed him to be "just fine and capable "

But there have always been things that weren't normal over the years.

Now everything is not normal at all.

But anyway, have any of you found this to be true about being seen in a different light in the family after becoming a caregiver to a spouse?

I've not really seen any threads on it, but its happened to me, and it really is a surreal experience and its like something youd see in a Twillight Zone episode😄

So yes, this is my question today

Its a beautiful sunny day outside, I did get to sit outside for awhile when it was still warm, and rrelax a bit It was a super busy week, I should be grateful for a little time to relax instead of thinking and doing a million things. But I just feel crabby. And I dont know why.

Perhaps my thoughts have caught up to me...some things have sunken in that THIS is how my life is going to be from now on. I guess i sort of had glossed over the fact that things now are permanent...I mean, I KNEW they were, but I kind of put that out of my mind in some way, maybe to save myself grief?

My husband has a wheelchair ramp which is over my flowerbed, I knew some of my flowers would have to be dug up so they wont grow into the ramp, but I think now it hit home that this IS permanent. The ramp is not going anywhere. Everything else has to change.

My husband was saying that he wants to kill the grass underneath so we dont have to worry about mowing there, but the likelihood of HIM doing it, is not great. Someone else will have to because my husband gets worn out quickly.

And the fact that that will also change the landscape of our house, makes me sad., I have spent a lot of time making thr yard look beautiful over the years, and now...Its quite a large area that is different.

Everything is different...not just outside.

I am different.

My husband is different.

Life is different.

It will never be just normal anymore.

Just "breaks" or time off, not living my life anymore, its just increments of time, not a full life

Maybe that's why I am crabby?

Do you feel this way too?

I am more like a maid instead of the main character in my life. It is most distressing

Do any of you caregivers feel like you are watching from the sidelines in your own life?

Like in a weird way....

I feel like this with my husband's family. Not that I feel slighted...its just odd.

My husband's family has finally listened to me that I need breaks. And they take my husband on occasion so I can have time off.

But in things where usually I would be included before, now theyre only taking my husband. Its such a weird feeling. I mean, I am grateful for the breaks...its just that it feels like I am on the outside looking in...part of the family, but yet not?

Does anyone else feel this way?

Hello All...I wanted to come back on here this time and say...how i feel so great and rested since I had a little vacation over the weekend. But WHY, WHY do us caregivers never truly get a break, even when on vacation!

I got emails amd phone calls for life insurance paperwork I have to fill out...they couldn't just do one or the other? Its thr exact same thing, just that I could fill it out by phone or email. And they didnt stop at just one notification of each...several notifications of each! Id guess theyre automated...but still!

And that was not all. There was a pile of To Dos before and as soon as I got home. No time to ease back in.

I feel just as burnt out and more as I did before I left.

I AM glad I had a little break but is there ever an end, (not counting death on my part) where I wont have to always be in charge of multiple things or make phone calls or fill out paperwork or do endless housework or other miscellaneous?