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

No thing.

I'm adding to my previous post. Today is an exceptionally hard day. Got John ready for his day at day care, then had to drop my daughter off at work so I could have my car for the day. We are ready to leave and he walks past me and I smell poop. He had gone to the bathroom in his pants not 5 minutes before we were supposed to leave the house. I just lost it. Started crying and yelling about how I can't do this anymore. My kids are grown, this is supposed to be MY time and yet I am taking care of a man that I was separated from for 14 years before his aneurysm. His family doesn't want him, so what can I do? I'm tired of feeling sorry for myself and having no life anymore. I quit my job 3 years ago because it was too hard working full time and taking care of him, and now I just have my kids, the grandkids, and him. Then I feel so guilty for saying/thinking things like that. I have more than most. I just feel like everyone you talk to feels so sorry for your situation but there's really nothing they can do. Sorry for my whining.

sandyk05, I commiserate. Perhaps the old boy just can't hold it any more or can't remember that he needs to go before you leave the house. My husband also can't hold his bowel movement any more. With the 'depends' pull-on pants it's easy to just get him to just let go, then walk him to the bathroom and carefully remove these pants with the mess. Then it's just a quick warm water & soap wash to make him nice and clean again, fresh depends, and off we go. Takes all of 10 minutes at most. I also give my husband an immodium tablet when he has diarrhea - the kind that dissolves on the tongue. That usually cures him for a day. Schedule extra leaving time if you can so you're not rushed when an emergency arises.
I understand your despair, take a deep breath and remember "..it happens".

Sandy, please don't ever feel sorry for whining - that's what we're here for - to support each other. This is a rotten situation that has been forced on most of us by circumstances beyond our control, and it just flat-out stinks some days.

Hang in there sweetie.

Dad couldn't figure out how to turn on shower last night. Got that figured out now but after I got him to bed went back to watch Tv.
Husband called me and dad had gotten up went into our bedroom, filled a cup I had on dresser and went to sleep in our bed.
Woke him up very confused of course but got him back in his bedroom. That is a new development.

The losses that come with the territory are 1 thing, but the ease of which so many assume you are a parasite waiting for someone to kick the bucket, just because you would ever let your Grandmother down and never leave her or abandon her.

I was abandoned, and left to dry, luckily I had an agreement or I might be pushing a shopping cart around missing teeth.

57twin, that is frightening. If you read this let us know what has happened in the last few days.

He has been pretty good back to "normal" for him. Pretty talkative when I picked up at adult daycare except when he took off his coat he pulled out an electric razor with cord from his coat pocket! Will have to call tomorrow as I have no idea where he got it besides from somewhere at the adult daycare.

Mom has been gone for hours and said, "I'll be right back" when she left. Talk about kicking yourself! SandyK05: This may sound strange, but I ENVY you for being able to let it out. I know you feel horrible, but don't. We can only take so much. I feel SO guilty b/c I was SO happy to have my house to myself--even if it was just an hour or so--and NOW... what if something has happened to her or, worse yet, she has caused injury to someone else? We were supposed to go to the Notary's office today to get the POA finalized, but we hadn't set a time b/c I was playing phone tag w/the Notary. Maybe she's doing this for spite.... who knows? I realize that SHE probably doesn't even know. I'm supposed to go with my dear friend (single mom) whose only child is graduating High School tonight. I promised her I'd be there for her. I feel like I can't make promises to ANYONE anymore. If you believe in prayer, please say one. I'm so tired... and I was having SUCH a good day for a change!! Thanks to EVERYONE on here and I wish you HOPE for better days! PS to sandyk05: If I had to take care of anyone else besides my Mom, I'd be beyond bonkers. Give yourself a break for "losing it" .... who wouldn't?

This thread had been on my mind for awhile now....I tend to think about everyone else who has loved ones farther along than my mother. For the past month "sundowners" has become quite obvious. She tries so hard for it NOT to be obvious...which makes it more obvious. More often than naught she can't remember where the bathroom is.... I can't blame her for having a sour look on her face. For that matter, I guess she can't be blamed for most of this. SIGH

My dad when he first moved in slept toll about 8:30 am. But has getting up earlier and earlier. This morning is was 6:15. There goes any just me quiet time this morning and no bike ride.
*sigh*

I feel, at times, my life has been held hostage. I have a brother, he even lives WITH my parents, but he stays down in the basement unless he is eating or going to work.
Between work and parents I leave the house before 8 and do not get back till 7 or later...
When do I get a chance to see my kids?? Or my husband?? Oh wait!! When they come over to my Parents house to visit them or work for them.

I no longer have a life !! Prior to this past year, my focus was on my job and my three children. Now the focus is on this daily fiasco. Perhaps I wouldnt feel as bad if my father couldnt do anything on his own. He simply cannot live alone. On a daily basis I have to deal with his caregiver who I am convinced loves to create drama. Im the only person who has to deal with it. She is the perfect employee when my siblings are around and Dad just loves the company. Since I work from home I have to deal with the daily dose of drama. She cannot simply come in and do her job. She has to has a reason to leave early, to talk loudly on her cell phone, to complain when someone doesnt "help" her with the groceries, or if someone actually tell her what to do.

I know the feeling. I have only been at this a few months, it has always been how grams is, not how are you. No one asked if I needed anything.

My guilt over feeling selfish and asking for what I want came to a head, I had a temper tantrum, broke down and cried so hard I thought I would never stop.

Then I asked for what I wanted. Because one day my dad says "She is 96." What is that suppose to mean? Yes, it is difficult for her. I told him it was difficult for me to. Did he forget I gave up my home, my business, to move in here so I could take care of her? It is not easy for me either.

Now I am asked how I am doing, if I need anything. She gets angry, but I let it alone. Because I do count.

We do count. But not until we say we do. I have to heal my childhood wounds and then I am more readily available. I have learned how to ask for what I want and make sure I get it if it is available.

I am learning how to turn it around for me. How to heal my childhood wounds. This time with my grams has become a blessing despite the pain.

I wish you well on your journey. It is not easy. I do know only one thing, I count when I say I do. But then I have to learn how to make me count.

I think I have just reached complete compassion burnout. I get the meds, make sure they are taken, clean the bsc in her room, make sure she eats nutritionally, all the MD appointments etc, I feel like a robot. When she has boo hoo parties for herself now I feel nothing , just nothing. I just go about the motions of making sure her medical ,hygiene needs are met. Her emotional needs , who knows.She doesn't have AD, just a controlling narcissistic person who no longer has control and it ain't pretty. She is on an antidepressant. I just no longer have guilt over her complaints of being old, can't do what she used to etc...I don't have control over those things either. Just burned to a crisp.

I think I have a journal of about 200 pages of "the one thing" that bothers me most. This is a little, quirky thing that bugs me. You see my mom and I live together in a small home. I have my own room with my own bath. My little 8x10 room is my sanctuary where it can relatively be quiet albeit the thin walls. I can still hear slightly voices and sounds that occur outside in the other parts of the house but when I am in here the sounds are subdued. Now here's the thing: My mother---no matter what room she is in the house---will talk to me, ask me questions, comment, etc. expecting me to hear everything she is saying while I am in my room. I have told her over and over that I cannot hear what she is saying when I am in my room. I have even brought her in my room and I would go out into the other part of the house and loudly talk to her to show her that voices do not carry. But without fail (and always) she will continue this habit and when I do not answer, she will mutter and say stuff like, "well, I guess you are not talking to me", and the like. Constant negative mutterings if I don't respond. Most of the time, I ignore it, but it bugs me a little.

Daughter52, my father is like your mother. If he comes to the basement door and calls me and I dont answer. He continues calling me. If I dont answer, Im on the phone. Ive told him this a million times.. I try to talk louder on the phone (the person on the other end probably thinks Im crazy) to indicate that Im in the middle of the conversation.So I have to talk even louder. it always ends in me storming up the stairs yelling "Dad if I dont answer, then Im on the phone !!!!!"

My father wanted my whole attention to be on him. He would get angry if I was talking to someone else and laughed. He would then treat me rudely. Even if I'm on the phone, he would talk loudly to me and didn't care. I would shush him, tell him to wait.. to no avail. By the time I hang up, I am so pissed off with him, I lectured him and then postpone what he wanted me to do for him. Trying to teach him the cause and effects of his action. So far it's working. But who knows how long it will work as he progresses in his road to senility.

The thing that really gets my goat is how little support there is for caregivers. Caregivers could use assistance and services as much as the people they care for. If you don't have a massive network of very committed people with a lot of time on their hands to help you out, then you have a hard row to hoe. The house goes without repairs, as does the car. Your own physical, dental, and mental health goes downhill. It turns into a giant tsunami of disrepair, decay, and depression. A lot of people's financial situation goes into crisis. This is stupid. There has to be a better way.

It also ticks me off that it seems like caregiving gets into the same debate I heard when my kids were babies. The stay at home moms vs. the working moms. Just substitute the word caregiver for the word mom, and it's the same argument back & forth which solves no problems.

Aside from all the annoying and hurtful behaviors my mom inflicts on me, the big thing is I miss the few good times we used to have together. I have been working at replacing her with new friends, having fun alone, doing things by myself and not having to share what I do with her. She doesn't care, is jealous, or uses whatever I say as an opportunity to put me down, so no more relationship. I am done. I serve the basic necessities as needed and I don't feel guilty anymore. Only so much abuse I am willing to take. Too bad. Mom used to be my best friend and confidant.
Now I don't trust sharing anything with her. That's sad.

ALL OF IT !!!!!

Judge Buddha, I so agree about no longer sharing your day. Father ends up somehow twisting it against you no matter how innocent the original story was.

isolation.....

Sandwich you are so right about the same debates goes on as the ones mothers experience. I find myself not being able to relate to non caregivers. Most of my friends parents are much younger than mine so they have no idea what its like.

I totally agree that no one who has never done this can relate to what we are going through. This weekend, one of my nephews, whom we have not seen in well over a year now, is "coming through" town for a visit with his dad...thing is, I know they have been in the area for the past week, the entire time visiting the wife's family and extended family...all of them much younger and in better heath than Mom...and probably me too at this point. Not one phone call, nothing...I have stopped looking for them period until they "pop" in ...(which I also hate....those dang pop ins) . Tonight my brother had called while I was napping while Mom slept because I have been battling a migraine all day. I didn't even try to have the phone where I would hear it...He left a message letting me know they are planning on coming by "sometime" this weekend. I don't care. I am done with them. They are been here there and everywhere for a solid week...I know because I have seen it all unfold on Facebook. they don't give a flying fart about us so the feeling is now mutual. I hate it for my brother and for Mom...But I am so over it. We are pretty much invisible to most folks now...and apparently visiting Mom and myself is just not on their radar of "important people to see".. very sad...

I read all these posts and we are all in different situations, but yet so very much the same. The loss of yourself, friends, a LIFE. My husband doesn't talk much, he doesn't know anything to talk about. Sometimes he'll say something crazy about a day at work or some such thing. I will be 60 years old this September, had just gotten my motorcycle license and was hoping to get an electric scooter and just have fun, you know? Well, I got the license but can't afford a scooter since having to quit my job to take care of him.

And even if I could afford one, when would I go? How could I justify leaving him alone to go out for a ride? What if something happened while I was gone? It's worse than having a baby. Home care is expensive, day care is expensive, he had no long term insurance, how do people do it without losing their mind?

I am getting out tomorrow, though. My daughter is coming to stay with him while I go to the March against Monsanto in Denver. I'll be home in time to take her to work. It will be nice to get out of the house and just talk to people.

Sandyk ....totally understand. I had finally reached a place in life where I thought I had "made it"...I was about to start traveling, dong things I had put off til "later".......then.....life happened and later never came.....plans on hold...until????? at this point, I have decided I probably need to just ditch those plans as thinking of them now is too painful. I thank God every day that I am not and never have been much of a people person. I have been called a loner and I probably am, and for this situation that is probably a lifesaver. Thankfully I do not need a lot of "stuff" to be happy and another good thing, as I have either already lost most of that or am about to...I think I have finally settled in to living simply, and trying to make it through each day and finding something to be thankful for...I don't know if I'm getting out tomorrow or not. My brother has to work so he won't be here, life on hold, plans on hold, and holding on......

The one thing that I keep coming back to is, I am missing out on enjoying my retirement. My parents retired at an appropriate age and lived in a retirement community where they enjoyed days and nights of swimming, dinners out with friends, bridge club etc. When the outlived their friends I encouraged them to sell their condo and move to an Independent Living Facility. That was about 10 years ago. My father died a few years ago and now my mother is living with me, because she doesn't like being alone. Well. I do! I'm 66 and in good health but am chained to a life of taking care of a person who is bi-polar, has NPD and can do nothing for herself or won't. I keep thinking, what is the point of living if all I am doing is prolonging the life of a 94 year old who thinks she wants to die but is afraid to suffer. Her life consists of a series of medical appointments. Sometimes it just seems so hopeless and useless. So, I guess that's more than one thing.

The hour is late and so I am feeling the need to admit something.....and I am ashamed to admit it...for I do love my Mom..but....there are times, when, as Scarlet15 mentioned, my parents enjoyed their retirement. They both got to live long and fruitful lives...I am thankful for that...and then, right around the time I had just begun to feel like I had a chance at a life, boom.....now I'm in this for the long haul...and I'm not planning on going anywhere, but there are times when I think...is this fair???? My parents got to do it all...I feel like I have lived my entire life making sure my parents got to enjoy their lives....my brother never worried about it, he was living his life, getting married, traveling, having kids..going on all the vacations, ....and because he was living and didn't worry about Mom and Dad I always felt responsible for making sure they were not feeling neglected or lonely ...and I felt like if I wasn't here, they were disappointed...so I just never felt like I had a right to be a normal young woman...I feel like I have been old my entire life.....it doesn't make me angry, so much as sad....I have aged so much this past couple of years....sorry for the pity party....just feeling like that part of life that most folks have was practically stolen from me....

This is so true, hope. My grandparents all died when my parents were in their 30-50s. They never did any caregiving. My dad's father moved in with us a short while after my grandmother died, but my mother didn't want him here. He left soon. One time my mother commented to me that when she was my age she was still working. I told her that at my age she wasn't taking care of her parents. That made her think.