u/PrincessVine

There seems to be no true solutions for us younger married caregivers to have lives beyond what is.

Again...I am 49F, taking care of my 52M husband with cognitive impairment and post impairment syndrome/CP.

I see my life fading away before my eyes and knowing there is no way I have to change any of it.

There's no possibility of divorce, it would devastate my husband and his family. And id rather not do that either, but I also hate being stuck in this just because I am married. People have noticed that I am not the same happy person I used to be. Minus the family...they dont seem to care how I am doing, which I have talked about before.

There is another alternate life I could have with someone else, but no way of attaining it. I would love to have a true marriage again, to just be myself and a wife, instead of a caregiver...to be able to go and do things id like to do instead of work and stress and being in charge all the time.

But I dont see any ways of it happening....my husband is not morbidly ill. We are both still fairly young.

Im just tired of everything mundanely the same.

When I think of never having hope of a different life, I feel like all the life is just seeping out of me. I cant NOT have hope, but the reality of said hope, is as slender as a spiderweb thread.

There is nothing the same anymore in my life. I feel like im always on edge unless I have a day off, which is not often.

I don't want my life to be this way forever

I know I write about this often, but I sure do feel burnt out again.

Im just so tired of having to do everything, figure out everything, the repetitive explaining things to my husband because he doesnt remember, its just so much!

​

I am exhausted all the time, dealing with my own chronic illnesses and doing everything else.

My two retired friends, and a few friends who live far away are the only ones who ask how I am doing. They call me courageous and a good wife.

But I just want to feel like myself again. Little increments of time by myself are not helping anymore.

This month is too busy for me to have a 3 day vacation.

I get one next month.

​

My husband gets to do fun things a lot...which does not always mean a break for me because theres usually things I have to do that cant wait.

I am dealing with my husbands changes by myself...last week he had more hallucinations and physical problems.

​

The family doesnt even ask me how that makes me feel when I tell them hes having issues.

They barely say anything about it at all.

​

I have poured my heart out so many times, thinking they will finally understand, and they thank me for sharing. But everything stays rhe same. Its just frustrating.

​

If this is how my life is going to be forever, I dont know how I can keep doing it all.

​

I had to get rid of more things in our house and rearrange again because my husband kept pushing them to the corner so they weren't able to be used...when an idea hits him which seems logical to him, he is just impulsive and does it now amd some things I cant talk him out of. Even if its NOT logical to do.

My house is becoming not mine anymore. My life is not mine anymore.

​

People say...well, change your outlook...I surely do try, but I am worn down. Normally I am a very positive person and happy all the time. But I am struggling so bad.

​

​

My husband has cognitive impairment snd other issues, however, the cognitive impairment is what I am addressing today.

Since being diagnosed with MILD cognitive impairment last year, my husband has rapidly declined im this area to the extent thaf I dont think he is in the mild stage anymore. I may have him retested. Others have noticed this rapid decline as well.

So, because of this...my husband is like a child in some ways. He has become very impulsive, loves to shop, loves to scrounge things from the curbs that people are getting rid of, will wander off without telling me where hes going because it doesn't occur to him that he should...so many things.He cannot drive anymore, and he also hasnt done any mowing of the lawn or things like that which he used to do, since last year.

Anyway, I have had to tell him he cant do some things because we cant afford him to shop all the time, and scrounging peoples discarded items is not always a good thing either. Also, sometimes the things he posts on fb, while generally the same topic over and over, border on perhaps being insensitive, because he doesnt have a stop button anymore.

Idk how much to not let him do? Some things are obvious, but some things are not good for him to do, whether safety wise to himself or others, or literally, im having a hard time also because he IS still an adult, even tho he doesn't always act like it. I dont always want to say no to everything. But is there a good rule of thumb to go by in this situation?

If he was a kid, it would be easier, but he isnt.

Also, even tho his family knows he is having these issues, they still arrange things with him and dont tell me about it. So the only way I know, is if my husband has his phone on speaker (he is also hard of hearing so he usually has the speaker on) or he tells me. But sometimes he forgets so then I might have to readjust the schedule when I find out.

I have asked the family to please tell me, and for awhile they did. But now theyre reverting back to just telling my husband, even tho they see and admit that my husband has declined greatly.

This is also making me feel like the family is not really seeing me as anything except the caregiver. Which, I have said before, its fine, because then I dont have to be held to the standard they set anymore.

But its actually getting annoying in some other ways because for instance ...we had my husband's and his twin brothers birthday party last weekend .

I was bringing a lot of the food...plus we have my husband's walker and extras for him.

We have a smaller car.

His mom called and asked HIM (remember, he doesnt drive anymore) if she could ride with us to the party and what time we could pick her up.

There have been several instances of this lately. Instead of asking ME who is the driver and knows how much room we had in the car, and when we would leave, ect. She asks my husband. And other family members have done this too.

Im just bewildered at this. . Its like they recognize whats going on with my husband, but theyre not acting accordingly.

I am finding myself getting frustrated a lot.

Losing patience and feeling crabby because it's hard to be asked the same questions over and over by my husband, even tho i know its not his fault, its hard to have to do everything myself, its hard to know what to do with my husband for all these changes , its hard to handle all the finances and paperwork and phone calls and decisions....its just a LOT!!

As usual, I have been pondering my life as a caregiver to my husband.

I feel even more so that I am taking a back seat to my own life.

My SIL asked me the other day if I have been working on crafts lately. To which I responded that its very little if I do. I have always so much to do because its just me doing everything since my husband cant.

Many times, even if my husband has gone out with someone for awhile, I might not be able to do something fun if there are things I HAVE to get done...which has been the case lately. If its housework or things like that, I WILL and have left it til later if I know I can have a break when my husband is out. But some things have to be done right away so I have no choice.

My husband actually does go do more fun things than I do...because people invite him.

I dont get invited anywhere except for my one retired friend. And then I have to arrange for someone to stay with my husband.

Also...my husband going and doing things is a catch 22 evwn if I get a break, because usually he will get very worn out and it will induce more symptoms of either his cerebral palsy impairment syndrome, or his cognitive impairment.

And then its me dealing with some scary incidents by myself.

I just really would love to have a normal life again.

Nothing is normal anymore, and I cant forsee that happening again with my husband the way he is.

The small bits and pieces I get of ME having fun or normalcy, only makes me long for it more.

The longings are so overwhelming and intense. I try not to, I try to keep things in focus, I try to only think of one day at a time, to laugh about things so I dont cry, to appreciate what is good, but when things are so mundane, so much repetition of explaining and repeating things to my husband eveey day, all day....the unpredictable/scary behavior, its hard to put any of that into focus for any amount of time..

I just want to have a life again!

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?