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

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?

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.

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

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.

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.

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.

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".

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.

No thing.

Whitesage, I know what you mean. The depressing part is not what we are doing caring for our parents, but the constant reminder of what is to come. Its the feeling of hopelessness about ourselves and knowing we cannot stop from it from happening to us. Sometimes I wake in the night and ask myself, why are we here, why is it we work so hard to do good and accomplish much only to have it all end so quickly and in such a humiliating way. Its just always in your face caring for a parent as we are aging ourselves. God bless those who do this for a living.

Fregflyer: I agree 100% but I didn't apply for this job. I woke up 1 day and it WAS my job--12 hours' notice!
But my main complaint is: knowing where to start if you've decided that your parent needs to go into a home. I've been on this path for 4 months and normally love to research, but now I hate it, b/c it's all a maze. I could now write and book and, if I had any energy left over, I would. I'm stuck: Mom wants her own place; we're in the process of getting a valid diagnosis (i.e., dementia and related diagnoses) and I've drawn up a POA to allow me to discuss her medical needs, applications for Medicaid, etc., but NO ONE can tell me which facilities in my area accept Medicaid. Mom has NO assets (unless you count her 15-yr-old car). She gets approx $900 in SS each month and that's IT! I don't know about other states, but just getting a list of facilities that are not strictly PRIVATE PAY is next to impossible. You're already in a crazy-making, exhausted, frustrated and confused state of mind and you assume SOMEONE will guide you, but you're passed from one Agency to another. Our saving grace has been the local Alzheimer's Assn and a neurologist who knows how the system works.
As far as Mom's "IT'S ALL ABOUT ME!" mindset, join the crowd. I URGE all of you to find other caregivers on this site who've posted about their parent (usually moms!) who fit the Narcissistic Personality Disorder diagnosis. It explains a lot and you learn to just lower your expectations, nod and say "uh-huh" and "OK" and move on to the next subject. Blessings to you all!

Amy - your post really hit a nerve. My Mom has advanced Alzheimer's - she cannot move, feed herself, cannot talk and is incontinent. Watching her struggle everyday makes me soooooo scared to grow old. I wonder everyday, will this be me? It depresses me.

Oh AmyGrace I fear the same thing!

I'm going to add another to my previous comments:
The constant reminder of my own mortality, and worse, that this could be me in 20 years. The terrible fear that I might be forgetful, stubborn, dirty, deaf and so annoying that my children will dread being around me, and will feel about me like I feel about my mother!

check out this website for caregivers… mmlearn.org

Stress and being pissed off at family.

Not being able just to get up and go to do whatever you want.

Last night, after helping Mom with her shower, she told me that it is so hard to get her support stockings back on after a shower. I suggested "a little big of powder may help." I was told that that would work, but "the vacuuming does not get done often enough around here!" I told her that the maid just doesn't get paid enough to vacuum more than once a week! After my sarcasm, I did say that I would be happy to vacuum her room more often if she asked me to.

I know that I should let that comment go, but it really irritated me! I still have 3 of my kids living here, a husband, and her to take care of, plus I work full time. Life is never easy. Why can't I just take that comment with a grain of salt and not stew over it?

Feeling trapped in this life. But not wanting to place her in a nursing home, either. Not receiving any family support....I could go on and on with this one.

{{{{HUGS}}}} to all! I agree with each and every one of you. This is a thankless job. I am grateful to all of you for giving me a place to go to complain and know that I'm not judged and you all understand how difficult this is.

There is no break, no time off. What scares me most is that this could go on for a lot of years. Each time I have to call 911, it chips away at me. Then I spend days and nights wondering if this is the end. I never thought it could be so stressful.

Losing myself and who I am is the thing that bothers me most.

The feeling of complete and total helplessness. I have no control over my life anymore, it's all just taking care of him. And then I feel terribly guilty for thinking that.

Losing myself and who I am is the thing that bothers me most.

Total loss of privacy and independence.

No end in sight/losing touch with myself. With all the added responsibilities of caregiving, just existing humanely is emotionally draining most days. People tell me how lucky I am to have a parent still here (because narcissistic families always look perfect on the outside), and I choke back bile and a biting retort, and try to smile and give a "proper" response. (And yes, I feel guilty about that.)
Yesterday, a neighbor told me her mother had been given six months to live. And I almost congratulated her! I quickly corrected but she knows me well enough to read my emotions. I was mortified. Fortunately, she laughed and told me to hang in there, my sentence would be up soon, too.
Everyday the bars are getting more and more confining, while I lose touch with the real world. Humanity moves on without me, and I am losing my ability to compassionately exist in it.

For me the worst is losing my beloved husband who was always so wonderful to me, helping me, doing whatever he could. He is still my husband, but has lost so much. I need to be very grateful that he still has a sense of humor, tries to be funny or silly and tries to crack jokes. He is still wonderful, but is a different man.
And yes definitely loss of freedom!

I have to add: the thing that bothers me most about the egocentricsm--the "all about her" part of dementia, is that as I child, I was constantly told that it wasn't "all about me". But at the time, my selfishness was fairly appropriate (kids have very little sense of the totally of family needs) and this wasn't handled very well by my family; we had a succession of ill grandmas and other relatives who lived with us and/or took up my parents' attention. In part because of these experiences, I was determined NOT to caregive my mom at home, give up my career and retirement earnings and time with my adult children and grandchildren. I guess I feel like I got the short end of the stick early on and I'm not going to get it now.

It's the "no end in sight" and the unpredictability of it. It changes all the time and there is so little time or opportunity to "get it right". Even though my mom is in a good NH, I cringe every time the phone rings. Hey, I have it easy, I know. And even at this distance, with lots of good help, it's stressful. I can imagine how I would feel if she were living with me.

I understand those feelings. Mama seems to come back for little visits from time to time, but like you said, she has lost interest in television, and pretty much everything else...I even miss not having to cook meals for her....now i have to get really creative with those nutritional drinks....yes, I guess the hardest part of caregiving is the just "knowing" of what is imminent and knowing there is nothing we can do about it but just keep going....sometimes I feel like my soul is slowly draining from my body too.