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

Not having to explain so much of what I do, or don't do. I have to explain how no, I don't want to go "out" on the weekends, and how I don't just sit in my room and stare at the walls, how I don't want to "go out and meet someone", and how I'm 1000% certain that my SO isn't a figment of my imagination (note: they haven't met him, for a myriad of reasons, including the fact that he's living in the UK atm). I'm even put in the position (repeatedly) where I have to explain that whatever my brother has (or hasn't) done, *is not my fault/problem* (another note: he's 44 years old... as an adult, he's responsible for his own actions imo). Drives me freakin batty.


Also, the negativity. *EVERYTHING* with my mom is negative. I'm generally a pretty positive person. I've got PTSD and a panic disorder, but outside of that, I fight to find the positive in nearly every situation. If I can't find the positive, I find the stuff that is at least neutral about it. She's the kind that can turn the best things that happen to her, into the most difficult, negative and hurtful of situations, just because. She doesn't need a reason, she just cannot see the positive in anything or anyone. Does my head in, sometimes I'm surprised how I survived my childhood and teen years in that sort of toxic environment.

Hmm But my mom is 92 and with no diagnose of Alz or Dimentia. And she has always been Narcisstic (with no exageration), verbally and physically abusive from as far back as I can remember in childhood. So now, I am most angry that she expects me to be a saint for her, have no opinions, have no self at all, and be at her beck and call while she once again, takes no responsibility for her own words, actions, and emotions. I am full of anger and resentment. I feel like a hostage: no matter how many boundaries I set and try all kinds of things to not see her.

I posted earlier about my frustrations with being a 39-year-old man and live-in caregiver for my 94-year-old grandmother. This is actually my second time being the caregiver for one of my grandparents.

My sister and I took care of our other grandmother (dad’s mother) for the last five years of her life. She had crippling rheumatoid arthritis, severe and ‘late-stage’ COPD, and ultimately died from stomach cancer in February 2012 at the age of 86. It was a very different caregiving experience because I had a partner to help with her AND to provide emotional/psychological support for me (my sister), my grandmother was very appreciative for everything we did for her (she would often make me cry because it broke my heart that she thanked me so sincerely for taking her to the doctor or for going to the bank and grocery store for her) and I was always closer to her than to the grandmother I take care of now.

This time around, my sister has a very demanding job and a husband and teenage son who need her time and attention when she isn’t at work. We also live about 35 miles away from her, so it’s just not possible for her to help during the week. She is great about giving me a break for at least 8 hours almost every weekend at some point. My other grandmother wasn’t just my grandma, she was my best friend. But I’ve never had the same type of relationship with my mom’s mother (the one I live with now). To be honest, my mom has never had a great relationship with her despite being her only child. My mom eloped with my dad three weeks before her 16th birthday just to get away from her! She is a devout Pentecostal, which I totally respect, but her strict beliefs made my mother’s childhood very difficult. My sister and I didn’t like spending much time with her when we were kids because some of her beliefs didn’t make any sense to us or they contradicted what we believe. For example, she would never play a game that involved rolling dice or playing cards because it was gambling which is sinful!?!? Playing Monopoly or “Go-Fish” is sinful? I’m quite certain Jesus would be cool with it!

The proverbial “icing on the cake” (more like “straw that broke the camel’s back”) is that she is NOT appreciative of anything that I or anyone else does for her! She constantly complains that we stay on her all the time about something and (apparently) we enjoy having that power and control over her now that she’s old and frail. She COMPLAINS about everything constantly and repeatedly. If she complains about something within my control, I try to fix it hoping it will make her a little more comfortable….but it never seems to work out that way. Sometimes when she is berating me for the daily laundry list of things I do wrong, I look at her and say, “Thank You once in a while would be so nice to hear….” Maybe I’m a bad person for doing this, but sometimes when it gets really bad and I’m nearing my breaking point, I ask her “What do you think Jesus would do if he heard how you were talking to me right now?” or something similar.

As I said above, I respect her beliefs even though I don’t share or agree with some of those beliefs. My sister and my mom and step-dad also don’t share her beliefs, but they have the utmost respect for her right to believe and worship any way she chooses. She doesn’t extend the same respect or courtesy to any of us. Because we don’t believe exactly the way her church does, we’re all going to burn! She hasn’t verbalized it directly to me since I moved in with her because I told her I’d leave forever if she did! But she alludes to it when she says a prayer or blessing at meal time and other friends or family are present. She really can be a nasty, hateful little old woman at times…..
It makes me miss my grandmother that died in February 2012 even more….I miss my nice grandma! Being her caregiver was a pleasure and an honor….but I can’t say the same about my present situation.

Hi Nikki ...
Janis Joplin's "Me and Bobby McGee" is the song I think you're thinking about ...
Freedom's just another word for nothin' left to lose, And nothin' ain't worth nothin' but it's free,
Feelin' good was easy, Lord, when Bobby sang the blues,
And buddy, that was good enough for me,
Good enough for me and my Bobby McGee.
Yikes ... great now my head is going to be singing that for the rest of the day ;)

I guess I am strange. My husbands Alz is different from the norm. What stresses me out most is his inner workings. If he can poo or not, and if I can get him up in time to get to the bathroom, if he is aware enough to be able to walk. I take care of him myself. He is 76, diagnosed 5.5 years ago. He cannot speak so he doesn't make me crazy that way.
The times I cry the most are when I look at him and think of what he was. He was my husband but I don't know who he is now. He was a strong, tough, ready to fight 'if someone looked at me wrong' guy, several tours in Viet Nam retired Sailor....and it's so hard to watch him deteriorate.

Guilt is a form of fear. Since we are on the journey, we get to choose if we go through it joyfully or fearfully.
To answer the question, NO THING. & I do mean No thing.,

@onlyKAR - I completely empathize with you on the travel thing. I keep thinking, "where is MY life?!?" "when am *I* going to get a chance to have my own life?" - and then I have to remember that I am the one that signed up for this "position" of caring for Mom and taking care of her finances and things around the house when Dad became ill and quickly passed away. No one else in the family could or would do it - I was the only one without a job outside the home (I own my own business and work from home), without small children in the home (2 adult kids and 1 teen that lives with his dad), and without a home that I owned (I rented). So it naturally just fell to me to do it. At times - like last night - I see my friends and family posting on Facebook about how they went out to the local pub and had fun with friends, or how they are traveling to further their career or taking a "girls day out" and going shopping, and I am consumed with envy and anger at my situation...but again, I have to remind myself, I am the one that put myself here. No one twisted my arm or told me I had to. However...Mom's undying gratitude to me always reminds me of how much she needs me, and that she might not be here if I hadn't done this for her. The other day, she told her doctor that if she didn't have me, it would have been hard to go on after Dad died. That struck me to my core and it was hard to hold in the tears.

As much as they frustrate us sometimes, we have to keep remembering that they need us - sometimes we are the only thing keeping them alive and in this world. That's an extremely important role, and we can't take it lightly.

When my husband talks about the travel dreams we've had and how he'd still like to do them. I know we can't because we have my mother, can't leave her and it is difficult traveling with her. Then we look at each other and remember this is what we agreed to do.....

I am new at being a caregiver. Family only comes when they have to. She is very unappreciative.. very critical, very everything.. I love the times we share when she is kind and caring and we pray together, those times she is my best friend.. there are more good than bad, I just need to figure out how not to take this all personal.. and I will.. change your thinking, change your world around you, i pray and meditate, fill up with positive and go to the task God has given me.. I try hard to look at her like she is a little rebellious child who has no one for the moment but me. wow, when we were children they also gave all for us, now it is our turn. someone did it for my dad, now i am doing for someone else's mom. I do get a couple hours out a day, life alert is the sitter. some folks I know have it harder, but keep the faith your day will come to and the blessings that are in store for you because you took care of one of God's kids… the battle-ax one really tickled me.. thanks.. God Bless you all - hang in there.. talking to myself also!

One thing? After reading these entries and seeing how they mirror our life and knowing all of you share many of these same experiences. I would say the one thing would be why are we not banding together? How much are we saving the government by not taxing medi care,caide by providing care at home, how much are we saving insurance companies? .Is there not someone among all of you with the skills, initiative, ideas or some kind of plan to make things better for the caregiver? Could someone write up a plan or idiots guide to how people like us could meet and maybe find ways to share the physical burden rather than just a format to spout our problems (You watch my Mom, I'll watch yours kind of thing?) Isn't there a retired govt. Or insurance person who could direct us to use or collective power to obtain monies or services we need now and again just to go attend to needs or for emergencies from these entities? Isn't anyone reading these entries and seeing we are buried hip deep trying to care for loved ones to keep them from the horrors we have seen or heard of in commercial care or out of respect and love? I've met some people in my 61 years who would qualify as saints, who can sacrifice themselves 24/7 but I know of and can see here that most of us are just human and need a bit of respite and an occasional hug for our efforts. Where are you folks who can help us find our way?

There can't be 1 thing because there are many. What I hear here most and I agree is the loss of freedom and the guilt about feeling resentful about having to do it. The other is family member and the judgement about the job I am doing but, of course, no one else is able to do it. Everyone has an answer. The lack of understanding about what the negative effects this job has on you and your life. Probably the biggest is the trapped feeling. Those are just 2 (or maybe 3...or 4)

I work part time and used to travel a lot. Now I'm afraid to go too far away. I worry that I'll be too old to get around by the time I have the freedom to go again.

Most difficult to me are the 'good moments' that just don't last long enough. A wonderful outing with my dad where we both smile and enjoy our time together ends with anger and upsetness because of a random thought that pops in his head while I fix dinner after our outing. Almost every good moment has a difficult moment and sometimes the good moments are far too few.

This answer is very helpful, because it takes patience, love, and assurance to help one with Alzheimers. Thank you marymember

Mom has said several times that it was my turn to wait on her hand and foot because she used to wait on me hand and foot. Is she kidding?? Maybe when I was a baby. I've been doing laundry, cleaning and cooking since I was about 10. I helped around the house trying to make her happy. Here I am again!

I'm a 39-year-old man and full-time, live-in caregiver for my 94-year-old grandmother. I hate feeling like a loser when I tell people that I haven't worked an outside job for the last two years because I can't leave her alone. There is no money to pay for help and my mom (her only child) has multiple health problems of her own. Twice a year, I go out to Los Angeles and stay with my cousin and her family for 7-10 days to get away and try to get some rest. Mom always has a meltdown 3-4 days after I leave and I end up calling every friend, neighbor, cousin and anyone else I can think of to help her out.

People who think being a full-time caregiver isn't a "real job" make me madder than he11 and I let them know it!

sorry for my typos it is late :-)

If someone has AD (Alzheimer's Disease) in my 8 years of experience, if it is not life threatening, I have tried every which way but loose, in how to react. Of course never improperly. But one thing that I found that worked the best, which is the bardest amount of work is silence. Because within 3 minutes they do not remember what the issue is about. I have like I said 6 years live in, first my mother, then my father, then my mother in law, then my father in law. My father was there to be with my mother, he did not have (AD), but he because so exhausted, just being there that we made a family choice to put her in a Assisted Living home. Which for her, was the best thing we could have ever done. So, I am speaking from 6 years of live in experience, with three totally different personalities. We have to grown boys, and my husband. Now, that we are alone, with two cats. I care give outside of the home, either 8 - 12 or 24 - 48 hours. Like I said, it is the tools that I have learned that allow me to keep going. One of the things that you need at least temporarily is tough skin, and you are correct, it is truly the saddest thing as to why people with AD are ignored. My mother had a huge circle of friends, and it is like they are afraid "they are afraid" they don't know what the disease is, and they are of the age where 1/2 do not have a computer. The unknown. So, that leads to the number one problem Isolation. It is a frightening disease, and then all of your friends leave you, and it is not a disease where you call someone up and say, "hello, can you tell me why all my friends have disappeared" It is sad. But, like I said, step by step, I am making a difference one family at a time. Giving the husband or wife respite, in this case wife, so that she can go out and do her thing, and the husband stays home and we put together jigsaw puzzles. It requires ALOT OF PATIENCE, BUT SO WORTH IT TO ME. GOD BLESS ALL OF YOU!!!

Well, I just answered a post, and I was answering someone talking about their mother in law, and somehow, my computer magically switched to another topic, so I apologize to all of you out there talking about your healthy mothers.

Have a great weekend.

I have to tread lightly on this, as I want to answer very delicately to the person whom stated that her MIL - with Alzheimer's. Remember, regardless of what bugs you is this, Alzheimer's is a disease, and it is proven and has shown that even the most giving people become narcissist, and I hate to even use that word. They do out of self survival. Have you ever asked anyone with Alzheimer's disease how they feel? What are the answers that you get? They don't know how they feel. So typically the aster is silent or I am fine. Keep in mind Alzheimer's has 100's of different variations.

So…. I do understand the selfishness, but remember, that was the way my client was before her Alzheimer's and now that she has it, she is very incredibly selfish, and everything has to be her way, but you know what, after about 2 days of being angry over that, I thought to myself "how selfish am I, I am normal, I have not terminal illness or disease, and I am angry because I am working 8 hours a day with a very selfish person." To me, after I looked in the mirror and stated that, it really was about me, and if I did not like the taxing, hard hard, incredibly hard work that it takes, then I needed to find another position.

Please note: I am not stating that all cases are textbook, they are all incredibly different, but remember you anger comes from the selfishness or stubbornness of someone else, but that someone else, now has an incurable disease. I am not stating you are right, or what ever, all I am saying, is that these people really want us people without the disease to try to understand that all of their character flaws are not because of them, they do now have a disease, regardless of what they were like before. They will more than likely die before their natural time because of Alzheimer's so, I guess with words of wisdom, I would say, stop, smell the roses, remember the good qualities of your MIL, focus on those, but also, remember that when an Alzheimer's person becomes combative and violent possibly it is time to move them to a more structured environment so that you are not emotionally bruising, and it is not acceptable for anyone to be violent, with or without a disease, however with a disease, they will just put them in a place that is a memory care, or such. It is a hard place to be, that I know. My mother has it, my mother in law had it and my father in law had it. I have been through three live in's and I am now a paid care giver specifically for Alzheimer's and Dementia, because I really feel that with the extra education that I took, that I can offer this world some respite, one person at a time. Be good to yourself!!!

Not to sound selfish, but nobody ever asks how I am doing. People always ask me how my grandmother is doing with Dementia, and they ask how my mom is doing, who has advanced MS, but I'm rarely to never asked how I am doing as my grandmother's full-time caregiver. That's what bothers me the most.

People saying "It's practice for when you have kids!" or that having kids is harder.

No, it isn't. My husband and I don't want kids, ever, and this is not practice. When I tell them that, they tell me caring for my grandmother isn't the same cos there generations are the wrong way around. I'm sorry, I didn't know bathing her, changing her diapers, feeding her, paying for everything, dealing with tantrums, not allowing her off the toilet till she's had a pee, and stopping her from hurting the dogs was totally different from having a toddler just cos she's 85 instead of 3.

Oh, I know what you mean. Yesterday I was cleaning the kitchen. I leaned the broom on the counter, but it slipped and hit the floor. Mom yelled out "If you break the glass, you bought it." Then she launched into tirade of how angry I was and how she knew I had done something. I told her that I wasn't mad, that the broom just fell. She knew "better" and went into a nasty attack. I knew it was just because she was feeling stress about my brother coming in this weekend -- she dreads it. I had to suck up something that a child of any age should not have to. I think I handled it well, but I felt like a verbal punching bag. I'll have to make sure the broom doesn't fall anymore. (walk on eggshells -- yeah, right. If it falls, it falls.)

The more I see that this is the way it is for so many of us the more I feel relieved and realize it's not Mom having it in for me: she is changing and has no idea what's really going on although she still is very functional. Keep venting, it helps illuminate another piece of the puzzle.

Let me add one more thing that bothers me: Not knowing how to react when mother over reacts.

Amen & amen, Susan. You said it all and you said it well! ((((Hugs))))

The one thing that bothers me is how irritated I can get with my mother, and how guilty I feel for getting irritated with her.

The irritation stems from her unwillingness to do much of anything for herself. I cook all the meals, do all the housework, all the laundry, all the dishes, all the shopping, take care of the bills and financial matters including getting her life insurance (she's never had any), getting her a medical alert pendant to wear (and paying for it myself), etc. She is perfectly happy to sit in her chair and have me jump and fetch things for her when she wants/needs them - even though she is perfectly capable of getting up and getting it herself. I find myself getting annoyed when she gets up from her nap, because I know the demands will start again.

It's hard to narrow this down to the "one thing" that annoys the most - there are so many - no help from siblings who act as though Mom doesn't exist until Sunday morning when we go to breakfast together - and then they forget about her again; the lack of personal space, privacy or freedom; the fact that I had to give up a home I loved to move in with Mom to take care of her - and the resulting guilt I feel for feeling that way, like I'm being selfish; and the fact that despite my best efforts to keep her mobile and her mind sharp, she is declining slowly but surely right before my eyes. She is becoming more and more forgetful, asking me to repeat things I've said several times, refusing to move around or walk unless I force the issue - and because she's not walking much and is morbidly obese, her muscles and joints are starting to become uncooperative. (sigh)

Not being able to talk about it openly.

I had an epiphany today...while wishing my mom was like she was 20+ years ago isn't going to change what is going on today, or what has been going on for the last 5 years or so. I just need to suck it up and realize that once she's gone, I'll think back to the times when I should have been nicer, more patient and understanding. But then again, she does make me crazy. So I plan to keep venting here...

I hate not being able to be my happy self since Mom moved here. The only times I feel alive is when I am not with her.

Awww!!! I only get to pick one!!!