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

I feel really evil sometimes. I want her to try to do the things she is able to do - drive to the pharmacy, wash a dish, pick up after herself - but she tells me she doesn't feel like it and says how she hates to be such a burden and makes me feel guilty. I don't mind doing what she cannot do but I don't like 'fetching' - "go get me this", "bring me that". I resent having to do things for her that I am fairly certain she could do for herself.

Wow, there are so many things... My parents are 90 and both have dementia. One thing that's hard is that my once highly intelligent parents are now basically shells. They are physically healthy and could live for years, but are mentally gone. So I mourn that loss, even as I take care of them each day. I described it to a friend as watching them die by inches.

Another thing is that Mom is completely self-focused. It's all about her, her, her. One day my dad fell in thebathtub and hurt his back. We had to call the fire department to lift him out and have the paramedics evaluate him. The entire time they were at the house (about 45 minutes) my Mom was complaining that she wanted lunch. I explained to her as I was calling for help that Dad had fallen and I would be busy for a little while. She saw the firemen come in the house, so she knew they were there. But since they weren't there for HER, she wouldn't shut up about her lunch being late.

As others have commented, it is hard having to be with them 24/7. They can't be left alone for very long, so even if I'm just running errands I have to come back in between to make sure they are OK. We can't put them in a nursing home because they can't afford it. For both of them it would cost close to $8,000 per month! So my sisters and I take turns taking care of them, and will continue as long as we can.

I'm apart of the sandwich generation, both my teenage boys live at home and my Dad lives with us as well. I feel pulled between the two, not enough time to give to both plus my husband and take care of myself.

It's all about my Dad, he loves to be served. I feel like a waitress, maid, mother and wife to him. My Mom died two years ago. He takes pills 6 times a day so I have to plan my day around him.

My Dad was a wonderful father and that is why I am taking care of him now. I wont deny however, its incredibly difficult and frustrating.

I was just wondering, can a person get a senior sitter for a couple hours.. just like we got a baby sitter for our children?

lovemom1: I would question how you are spending your life. If you Mom is in a nursing home isn't being with her 6 hours a day, a bit much? You do have other people you love and people who need you, as you described. Mom is in good hands and soon you will have to let her go. Then where will you be? It's so tricky to know how much to care, but I do wish for you a feeling of taking care of yourself, and also to have the experience of your grand children. The challenge might be to enjoy life within your parameters.
I have a fairly wealthy brother who has offered zero help, concern, and couldn't care less if Mom and I dropped dead. But I do ask him from time to time, if I think of something he could do for us. He can say no, but it's wrong of you not to at least let them know what you are doing. Everyone is making a choice to some extent.

For my personality it is many things...
mainly trying to be with my family under the circumstances. I once identified with the role of caretaker from early on just being a female and I consciously on some level felt my father raised me to expect to be taken care of . until one day I had graduation from high school coming up and therefore I needed to present him with a goal for "college". First time I realized he expected me to do anything with my life... All the decisions were made for me to that point.

As a caregiver, what I am committed too is all the battles I have to face and overwhelmingly feel inept at winning... trying to keep myself spiritually and emotionally fit. I am focused on my short comings or backsliding emotions and behaviors that tormented me as a child or reverting to such as overeating to fill the empty spots in my relationships. I lack trust in myself and therefore my relationships as well. now in spite of the efforts I have made to assist my parents, I have resentments I need to let go of and forgive to live with this responsibility. I am approaching my third year, getting a salary now having paid for my own private medical the first two from my savings. ..

Thirdly, The SENSE of ISOLATION I feel … the cost for me is greatest when the loss of emotional support from my once close friend seemed to weigh me down right after the crisis settled with my mother surviving her first stroke. What I did was to reach out to a Christian friend for a supportive ear. I assisted her emotionally, This disappointment I tell myself is more about her inadequacy to face her own failure as a daughter and caregiver... she opted for the new house supposedly to uplift her mother but the new more stressful house payment and the job that she detested to pay for the house ran her health into the ground and ultimately her mother was moved out of the house into a nursing home... I feel that was a one sided friendship.. but didn't recognize it as such. Since
I chose to accept the role of full time caregiver for my parents, so with that choice perhaps brought about the loss of this one friendship. Which leads me to realize I cannot blame myself for the loss of support of my friend. A friend in need is a friend in deed. I only reached out.
The caregiving role requires recognizing two wrongs never make a right... emotional abuse dolled out by my dad is now reciprocated in turn by my self righteous indignation something I would never have done unless I was this overwhelmed with commitment.. I take myself to therapy for support in understanding why I have a toxic reaction to my dad at times...
Why I have a toxic reaction to what I perceive as my mother's pride and stubborn nature working to sabotage my efforts to help her to not only survive 3 strokes and recover from these as well.

Touching on the role of the ( only) sibling, 1500 miles away well that presents another battle in my life. Brother and I have our own issues to sort through when all is said and done. The close and loving family ties will be tested in the same ways that my parents both opted to close doors to their sibling always over money. What a legacy I have to pray I don't repeat.

With my experience with alcoholics, it caregiving is like trying to help an alcoholic get sober who doesn't want the help? Is the aging process so debilitating that parents just don't take their own inventory and at times focus on the caregiver's character defects ? This is the process of caregiving that drives my self esteem to the ground... knowing that my inventory is easier to focus on rather than hearing them focus on their own defects of character. Are they lacking in measurable gratitude or am I cutting back on my commitment due to remarks like there's the door what's holding you back...? My favorite knife in the back by my mother when she refuses to eat or drink and I explain the benefits to her health per the doctor and nurses only to hear her tell me she is tired of hearing me! Then it escalates to my suggesting other caregiver's she could hire always adding they would not push her to eat and that I am tired of pushing her... that is when she implies that the door is there, what keeps me here? Honestly, I would like to find the answer to that question in the midst of the battle ! What keeps me here?

Initially love kept me here! That in and of itself was noble enough however the enemy had to bring fear into the mixture of emotions.. especially as the toxic nature of the battles began and continued...fear keeps me here! Fear of loss of family ! Fear of guilt? Fear of being made to see how foolish the battles were one day if I outlive them and look back after they are gone... God does not give us the spirit of fear so I know where this torment is coming from and that is what I mean by the battles of caregiver's or in general...life. I face these critical battles daily and I have to pray for the right weapons to defeat the enemy of my soul.

Nobody feels like they have to do a d**n thing but me. My mom was a wonderful mom to more than just me. I so agree with so many answers I've seen here. It's impossible to decide which thing is the hardest. Nobody asks about me, it's all about her. I never get a break. I don't have any friends anymore. I clean up poop EVERY DAY. I don't talk to anyone for days. I am so tired of doing everything alone, laundry, cleaning, shopping, paying the bills on top of her constant care. My sister said she would take her 2 weekends a year, mighty generous of her don't you think? She has not taken her once! I have had her 6 years now. It's all a big ball of crap that nobody really knows about or cares.

I thought of another "1 thing" that bothers me most. Another of the biggest is their lack of motivation to do ANYTHING. I can ask her (my mother) what she would like to do which gets and "I don't know" response. So I give her some choices---"Would you like this (whatever this is)"? "No". So you have to be the motivator for them to do anything. You can't leave a list of options because she will do zero to maybe 1/2 of them. So this morning, for example, I decide to take her to the nursery to buy some flowers for her to plant. She has been constant in her desire for a flower garden. So I thought maybe if we did this together, it would please her. We go, look the flowers over, buy several and bring them home. I say, ok, I will gather the pots for us to get them ready to plant. She looks at me like, "are you kidding me--you want me to do that"! She instead plops herself down in front of the tv and watches golf while snacking. So I plant the flowers for her so she will have something pleasant to look at while outside. She has not, so far, gone out to even look at them. Instead, a half hour or so later she says, "so....what shall we do today"? So done am I......

I CHOOSE to be at the nursing home with my mom 5 days a week for 6 hours a day. But I worry at what price this is costing me. I don't have time for my husband, my kids, my grandkids. I am so tired. I don't know how to relax anymore. I finally went to my grandson's basketball game last night and my daughter got mad because I spent the whole time on my tablet making "to do" lists. Not working at paying job has but a financial strain on us. And my 4 workaholic siblings - some millionaires are right now in Hawaii, Africa, Bali, and on a cruise because they know mom is well taken care of by me and I am RESENTFUL.

I CHOOSE to be at the nursing home with my mom 5 days a week for 6 hours a day. But I worry at what price this is costing me. I don't have time for my husband, my kids, my grandkids. I am so tired. I don't know how to relax anymore. I finally went to my grandson's basketball game last night and my daughter got mad because I spent the whole time on my tablet making "to do" lists. Not working at paying job has but a financial strain on us. And my 4 workaholic siblings - some millionaires are right now in Hawaii, Africa, Bali, and on a cruise because they know mom is well taken care of by me and I am RESENTFUL.

There comes a time when an outside home aide, assisted living or skilled nursing has to be considered. Unfortunately, each of these forms of care is expensive, but if the needy one has the means or can get government assistance, it will take a lot of pressure off the caregiver. We can only do so much, then the professionals need to take over. My husband has Parkinson's Disease and is in a long-term care facility. It's eating up all the money that we saved for a happy retirement, but I see him every day and know that he is being properly cared for. That gives me peace of mind.

A tip: Ignore the insults and the "it's all about me attitude". Your loved ones are dealing with their own devils, such as giving up their independence. Don't take it personally. Every morning pray for strength to face each day. Find a care-giver support group in your area. I am especially concerned about bookluvr. Be strong. Never let another person make you feel less than your God-given worth! To gladimhere: have family members spend a whole day with mom, including overnight - just tell them you need a break! Let them see first hand what you put up with.

Many hugs to all of you that you will find the right answers and will find the time to live your own lives while caring for your loved ones.

I hate missing holiday dinners with my daughter who lives 2 1/4 hours from me. I’d have to take my mother who has Alzheimer's and tack on an extra hour being she lives 25 minutes further away. It is too much to drive back and forth on the same day and then putting her to bed, driving home another 25 minutes and working the next day. Also, the repeating in the car for all that time would get to me. My daughter would like me to find someone to take care of her on a holiday so I can go to her house and stay overnight. I laughed because there’s only me around. My brother who lives in another state doesn’t even call me or his mother except on a holiday. I feel I am being cheated out of being with my own grandchildren and there doesn’t seem to be light at the end of the tunnel.

juddabuddhaboo & TardisTT40, I encourage both of you to get a copy of a book called “The MOM Factor” by Drs. Henry Cloud & John Townsend. Get the paperback version because it’s much cheaper, but the byline on the hardcover is “Dealing with the Mother You Had, Didn’t Have or Still Contend With”, just to give you an idea of what it’s about.

I read it for the first time about eight years ago (and have re-read it several times since) and it changed my life! In addition to being severely co-dependent, I use the phrase "emotionally immature" to describe her. She can't cope with difficult situations or making hard decisions. But she has always been incredibly controlling, overbearing and manipulative. For most of my adult life, I responded to her tactics with hostility and defiance and I often used language that would make the raunchiest comedians and roughest sailors blush with shame! My sister (3yrs older than me and my only sibling) responded to mom in much the same way until I shared this book with her.

My relationship with my mom is far from perfect and I still struggle with the way she acts sometimes. But 'The MOM Factor' changed the way I respond to her actions and I no longer let my blood pressure spike to stroke level nor do I verbally eviscerate her to silence her as a defense mechanism. I call her on her b.s. when she starts on me, but I try to do it in the most constructive way possible for her. I loaned the book to her so she would know that I was committed to improving our relationship and how I planned to do it.

It may not be the magic pill for all 'mom' problems, but I sincerely believe you will get a lot of very useful, healthy information and be able to deal with your mom better than you currently can.

What bothers me the most is that the family. They promise her the moon and the stars and then go home to their lives, leaving me the mess to clean up. The only things she remembers are their empty promises and how great they are as I rub her feet. I am tired of worrying all the time. Worrying about her. Worrying about what the family thinks and if they are going to sue me because I'm too busy caring for her to do paperwork properly. Worrying about my children.. I guess I can't pick just one.

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!