What is the one thing that bothers you the most about caregiving?

Today it's the lack of freedom!

Tomorrow I will be adding to that!

Putting your life on hold and not knowing if you will ever enjoy your own senior years.

JessieBelle..you know I had not thought of that...my grandparents all passed earlier on and so my parents did not go through the whole caregiving thing. I am pretty sure they would have, but never had to.....I will say the grandparent who lived the longest, because there were several siblings...ALL of them, including my Mom, took turns having her stay with them/us...but she was also pretty self sufficient all of her life until right at the end, also when all siblings helped my aunt where she was staying...Most families now it seems are smaller, and even when they're not, it still seems to fall on ONE person to have all the responsibility. I don't know what drives us on sometimes...I often wonder....but have no answers....

Seems like sometimes, no matter what I do, how much I do, how well I do it, and how devoted I am to it...it is never enough....never...ever...enough......

Guilt is a big problem for me. I am a widow and I care for MIL in my home but my office is downstairs.......so I operate our seasonal business from my desk. She left zero assets so I MUST work. When I am at my desk working, I feel guilty because I am not sitting upstairs with MIL all day. But seriously, if I were sitting there beside her..............there would be no actual conversation etc. Her only 3 sentences are:
It's cold in here
I want a cookie
I gotta poop
That's all she ever says. Yes, I try to engage her but there is no 2 way conversation. I spend every evening right beside her (with the tv) but she just stares at me the whole time.
So why do I feel guilty? Maybe because none of my efforts are making her appear to have any joy or quality of life at all. This morning, I put a blanket in the dryer to tuck around her (she likes that) and my dryer broke. Arrgh.
So, just like hope22 writes...............I feel like nothing is ever ever enough...

Guilt is also a big thing for me. If I am working, I feel like I need to be with my mother. If I am with my mother, I feel I'm not paying attention to my work. If I am doing house work, I feel I need to be doing yard work or my own work. And on and on. And I feel like I'm not paying enough attention to my rabbit. A frustrating thing is that, though I work all day long, my mother says things like "you don't do anything all day long." The rudeness and lack of gratitude make me wonder why even bother.

Well, I'm off to the post office and then the grocery store. Everyone else has a holiday weekend. Here it is the same old same old.

I think it is called living life for 2 (or more) people.

It's hard to go to the grocery store on holiday weekends because its a reminder of all the places other people are going etc. Today my house smells like poop and my big moment out of the house will be to buy thicker mil garbage bags.
I miss my freedom. I am grateful to be healthy but the clock keeps ticking........... and I can't be sure that my healthy days will not be ticked off by the time my MIL passes.
Sorry, just venting.
This is the twilight zone. ugh

I forgot to add..........my husband's funeral was on Memorial Day weekend (4 yrs ago) so I am an emotional mess... re-living those days.
I went to the cemetery this morning to fix up his grave but I had to rush there -and then hurry back to MIL. I hate that pressure to hurry back all the time.
I felt guilty taking time to grieve at my dear husband's grave.
He should be here...............not her :(

Rudeness and lack of gratitude...AMEN and AMEN. When I started this, I honestly did not do it with the anticipation that I would have any help, I have not had any help for the past thirty years with any of their business. The sibling and his family, now on his second family, have always looked out for number and even when my parents would invite them and encourage them to spend time with us it was met with disdain and aggravation...it was not fun here, they didn't have time...they had to go to HER mothers, etc etc....even after my Dad passed, the sibling and his wife didn't even come by the following weekend to check on my Mama. I was here, like I feel like I have always been here. I remember that day, her going to the window all day looking for them, wondering where they were. She kept saying, "I know they will be here any minute"...they never came. On my way out of town that afternoon, I had to pass by the boat landing at our park...Sure enough, there sat their fancy ass vehicle, with trailer attached and of course they were off somewhere in the lake enjoying their day...seems they got over Daddy fast enough. Sometimes I think I hate them ...I know I hate her...(the sis in law...now than God the ex sis in law) but the current one is not much better...hasn't been to see Mom in over two years....almost 2 1/2 now.....although she drives within one block of our house on the way to their lake home (which used to be half mine til the brother threw a fit after Daddy passed and they got that too) I have finally started being totally honest about my feelings. I am hopeful by doing so I will get it out of my system...but the continuation of the non visits and then when the brother does visit, I get all kinds of remarks about the house...This needs doing, that needs doing, why haven't you done that yet??? He brought his grandaughter here (by marriage) not long ago and while playing with the cat, she brought out a dust bunny too....the grand daughter, who is old enough to know better...very rudely and snottily said "Good grief...what do you do all day" I just glared at her...my brother laughed. no respect from anyone is right. Thinking back I wish I had said "I do what no one else is willing to do all day long..what do you do????"

I will add that there are some things the sib will do around here...but it is always one of those half ass rigged jobs...there is no way he would do that at his own home...and I don't want him doing it here, but on rare occasion when I leave him even for a little while, I come home and sure enough, he has taken a roll of duct tape and very tackily gone around the edges of the windows ON THE OUTSIDE and made it look like we live in a dump. when I pulled it off, it left all kinds of sticky gooey mess, so now I have to clean that off...thank you for creating more work for me dang it....he comes and cuts down trees that I do not want cut down even though I have told him not to do it...he mows over the leaves and cuts them into mulch even though it has taken me 2 1/2 years to finally have the lawn looking good again after all the mulched leaves in the root system almost destroyed our grass..in other words, does nothing I would like for him to do, have asked for him to do....but the list is endless of things he does that do nothing but create more work for me....gaaaaaaaaaack

Maria, four years is still fresh. I imagine you didn't have time to grieve for your husband the way you needed to. I wish you could find someone to stay with your MIL so you could spend some time at the grave and visiting old sites you used to enjoy with your husband. I wish you could make it a day all for yourself without feeling hurried or guilty.

Everything inside of me knows that what we go through is not right. Something is totally out of balance in the world.

Thanks JessieBelle.
Maybe that "something that is not right"...........is that people are living too long?
Dare I even say that?

I must tell you all that my husband was an awesome guy. And even though his parents were not good to him, he was a faithful son and so I will be a faithful DIL.
I love this CS Lewis quote:
"The pain I feel now is the happiness I had before. That's the deal."

Maybe it's not so much that they're living too long as many are not living with health. It requires a lot of sacrifice from one or more people when someone can't walk or do the things they need to do to live. There are many answers to the problems, but no one is effectively addressing them yet. End of life care needs to cost less. Caregivers need help. But most of all people need to figure out what causes the problems that come with age and do something about them. So much is invested in schools for the young and jobs for the working adults. Little is invested in caring for the older people. Sometimes I look around and it seems they are viewed as cash cows, with all their resources being drained and Medicare/Medicaid being heavily tapped into to provide care. Most people are not wealthy, so often there are many people like us who donate our own time and resources. Can you imagine what the education of kids would be like if education was handled in the way they handle elder care? Every family would be bankrupt and the kids would still not get the learning they need.

I also see that old people -- that will be us -- need to learn to be more flexible. I think the boomers will be more flexible, because their lives have been more mobile. I don't think that moving to a retirement home will bother boomers as much.

I do hope you can take some time for yourself to remember your husband and just enjoy the day with his memories. You do him so much honor taking care of his mother, but I know that is also an extra chain on you. All I can say is that you are wonderful. Your husband married a good one!

It bothers me how I neglect myself and my life. I need to learn balance.

Dear Nikki, Thank you. I read your post and it is as though you & I share the same story. Mom & Dad were married 70 yrs before he passed. He treated my Mom like a queen. I never heard that sweet man ever raise his voice to my Mom. Since he left us in March, I've moved in with Mom. My house is next door with my hubby, my cats & my life....but one day I will go back home. I, too, am an only child. I'm so used to going when I want to go & now it is a problem trying to make arrangements for someone to stay as Mom, in addition to the dementia, had a stroke and is bedridden. Not too many people offer to stay when they know diaper duty is at hand. This is not the way I thought retirement would be.....for some reason I thought it was going to be the best time ever..

All in all, I look at Mom & when she smiles at me, her whole face lights up. It makes it all worth while. I smile at her and start placing kisses all over her face and she giggles......she knows she is not alone. She calls out for my Dad all thru the day and night.....I just tell her he isn't here right now because I can't stand to see the hurt on her face when I tell her he is in Heaven.

It is hard right now for sure and some days are better than others. One day I can cry my eyes out, others I keep busy doing something.....but this woman lying in this hospital bed took care of me for many years. She changed my diapers, she fed me, she always had my back & if anyone ever messed with me, my Mom was on them like a bear saving her cub.

I can do this...........I CAN do this! I dang well WILL do it........I owe her that and a whole heck of a lot more.

Marialake...I love C.S. Lewis...and that is one of my favorite quotes of his...I'm about to put it on my FB page and update my status... :)

Some of your posts have made me think about my siblings and his wife. They live far away and my brother comes about twice a year for about one week and then I am "allowed" to go on a vacation. He was still working part-time although he 68 and his wife is retired. I have often asked him she could possibly come and help me out doing some of the more trying times that I've had with my mother. Is always some excuse about her not being well or not having time. A few months ago I find out that she has gone to Oklahoma to stay with her ex-sister-in-law who was diagnosed with cancer. Her ex sister in law has her brother living near her, who does not work, and has other siblings as well. My S I L stayed there for three months taking care of her ex's sister. This was extremely hurtful to me. Especially since she is always calling and telling me how much she loves me and my mother and how proud she is of me taking care of my mother so well and how I should always take care of myself. Money is not an issue and she could easily come to visit once in a while to give me a spell or a little break. My parents were always very good to her and accepted her very warmly into the family and my brother adopted her child as his own. I guess I just have to chalk this up to another one of those conditions that helped create the feeling of alienation we caregivers have. When the chips are down you know who you can count on, yourself!

Wow Scarlet! My SIL is the same way! My Mom has been so good to her through their marriage , as have I. Not long after she and my brother married, his ex MIL would come by their home as she could not accept he was divorced from her daughter.... my SIL used to get so furious over that, and I could understand it. I even sided with her and told my brother he needed to understand what that was so aggravating..well, fast forward....now that I am Mom's caregiver 24/7, she has not been to see us in over two years. She drives right past our subdivision every week on her way to their fancy lake home... She does not work...spends her day getting her hair done and doing whatever with her Mom who also lives with them but who is not incapacitated. she has never offered to stay with Mom one single time, even though all of my belongings are still in my home 2 1/2 hours away. I have got to get it all out as my house is about to be foreclosed on..still she is not offering to sit with Mom and yet NOW she and my brother's ex MIL have become best buddies....and then the ex MIL comes here and thinks she is going to play both sides against the middle. I don't even let her in the house. I understand none of it...to me, they ought to be ashamed but I know they are not....

I Hate seeing the Woman I married , who was and is the Strongest woman I ever met. I hate seeing her unable to be who she used to be. I hate the fact I get angry with her and haven't been able to provide her the retirement she deserved..

I miss holidays. There isn't much that's different on a holiday from any other day. No anticipation of special events or planning of fun things to do together. A Thanksgiving meal is prepared but then it's eaten and done, without any special sense of family or camaraderie with others. Having to explain the difference between Easter and Christmas. I miss those things that are special, celebrations.

The thing that bothers me most is being reminded that I am looking at my own not so distant future day in and out.The more frightening thing is knowing there will be no one there to care for me as I care for my mother.I anticipate I will be warehoused in some not so nice nursing home or facility for the poor and forgotten.

The thing that brings me "comfort" is telling my children. "This is how Im going to act at 88 !!!" I will get all dressed up at 6am and start calling them to call pick me up. Whatever is trendy forty years from now you can bet I will be wearing it and performing the latest dances on the front yard where all of the neighbors can see me. The thought of me driving my own children crazy is something I look forward to...

I had to laugh at your example. It's true people get so used to being waited on, having their needs met first they look pretty spoiled to us who are doing the serving. A lot of times we are our own worst enemies because we give in to every whim and then we wonder why is this happening to me. The lady I care for is treated like a china doll by her daughter in law and she expects me to bow and scrape too. I'm learning to let her do as much as she can for herself, and I feel it helps her feel better about herself.

I hate that there's such a fine line between "seeing the disease" that is taking/has taken your loved one and still trying to love "the person who's no longer there" (does that make sense?). I agree with Vladius: I hate getting angry with her and I hate that I can't be 1 of those daughters who just LOVES having Mom live with me and who would never think of putting their Mom in a home. I hate that, at the same time I'm realizing what IS and ISN'T dementia, I'm realizing that she's been narcissistic my/her whole life, and neither diagnoses can be treated. I hate that, even tho' I claim to be a Christian, I still can't handle her OR the rest of my family for abandoning her and yet, at the same time, I can't blame them either. It's a horrible paradox.

I couldn't wait for my only child to grow up and move out...she did that in 1988 and I was ecstatic. I've been responsible for just me and I love it...NOW, I have responsibility for my Mother and I am truly resenting it. She hated me all my life and the feeling was mutual. She was very abusive to me all my life and now I'm stuck with her care. God knows I am not a happy camper about this. I will try to care for her until I can no longer. I have had her for 4 weeks and have had a headache for three of the four...ugh!!!!

I feel tied down and suffocated.

Most of you have stated things that bother me, but the one thing that bothers me the MOST is that no matter how much I tell myself that it's not my mother's fault, I get angry with her! Then I get angry at myself! Crazy, huh?

Feel the same way so often dragonfly.....

This is bad for me, too, dragonfly. Last evening I actually yelled in front of her. My mother was wanting some laxatives, but I had given her some the day before that had worked. She didn't remember and kept after me for them. I finally yelled for her to please stop arguing with me.

I felt bad and I apologized to her for yelling. Sometimes we get put in a disheartening situation. It's like being poked with a stick repeatedly with instructions that say we're not supposed to react. But we are only human. At least I am. I haven't been able to find that superhuman caregiver cape yet.