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

That it never ends .My mother is 106 and I am 81. She was ready some time ago and so was I, but it isn't happening...

The hardest thing for me is the expectation that's put on me as an only child to solve all of my mother's problems. She's told me I'm "all she has left" and now everyone thinks it's my responsibility to take care of her. She is narcissistic, has dementia, and she's treated me horribly my whole life. Her "friends" call and text me about her all the time and they too expect me to do something with her. I've tried. Everything I do she circumvents, sabotages, or just plain refuses. It's constant drama. :(

Hi Sue - life must go on. I am with your husband You could be waiting years and years. I don't think it right for healthy people to be putting their lives completely on hold waiting for a senior in an NH to die. I would not want my kids to do that for me. There has to be a middle road - a compromise. Mother still recognizes us. She can't say much. Not sure she gets much out of the programs on the TV that she sits in front of. I don't see her that often as I live so far away. If your mum comes with you, you can visit as often as you do now. That makes sense to me. I have no idea about plane flights. Check with the airlines and her doctor.

M has dementia and has had several strokes. She is total care, which I can handle. The thing that bothers me most is she smear stool all over her bedding and side rails. Sometimes she puts her dirty hands on her face and gets it there. I don’t mind cleaning her up but it would be so much easier if we could just keep it in her diaper. Coming down first thing in morning and seeing this just sucks the life out of me. I just have a hard time dealing with this aspect of her care.

The extreme selfishness of some seniors. My dad wants to enjoy a second
childhood at my expense. He loves being cared for like a baby, and he's furious
with me that I want to preserve some of my retirement funds for my own care
I honestly think he'd like it if I died with him. The more I care for him, the more
demanding he gets. When I put some basic boundaries in place, he pouts, sulks and plays victim to all who will listen. Argggh.

At least I met many new friends on many occasions and stopped counting 10 fingers on both hands on multiple occasions and not far from my house when I call 911, neighbors. My new friends 🚔 👮 didn’t come for me; however, they realize the position I’m in. After talking to my dad they dump the hot potato 🥔 back in my hands. They say take care of your dad. Then cop says to me, I hope I don’t get call emergency 🚨 from you, him, or neighbors. Then said my dadnbelongs in nursing home or assisted living and you may try to get back to pursuing getting back to feeling normal.

betinna, you put up with this behavior why? If her were my dad, he'd be somewhere else.... How do you know you'll even outlive him?

I am struggling today with a migraine that won't quit after 3 days and I had my gallbladder removed exactly a month ago. I say this because on the days when I am not feeling well it is harder to cope as a caregiver. I moved my parents into my house 4 years ago. My father died this past May. I thought that it would be easier with just one parent to care for but I am finding it harder. My dad had vascular dementia but was able to care for himself with a lot of direction and supervision. My mom is going down the same path as my dad but she is more limited physically and not very mobile. At least when they were both here they could look out for each other within reason. I feel more confined with having just my mom now.

As an only child I am pretty much the sole caregiver with limited outside help. I feel pretty alone with the magnitude of the responsibility. My husband recently retired and is unhappy with our situation. We are not free to go out or away as we had hoped. I was teaching at a local university as an adjunct professor which offered me some sanity but I was not rehired this semester due to their hiring of additional full time faculty. I miss the structured time away from the house.

The thing that I struggle with the most is that my parents were good people and good parents. I feel as though I should want to take care of them but I don't. Everyone loved my parents and my friends and extended family keep telling what a good job I am doing. That adds to the pressure of me being the ever present and constant caregiver.

I don't see an end in sight. I feel guilty when I imagine how it will end because it will mean the death of my surviving parent. I find that there is often no place to be ok with my feelings.

Thanks for letting me vent. I hope others here understand.

The hardest thing for me, today, is the fact that my mother has always been a Princess, and now I must be the slave to the Princess with dementia. While changing her diarrhea diapers, I hear her berating my dad or me, "I won't wipe your butt".. When she yells for attention, i hear demands. She has never treated me with respect. I've always been ordered around. "Turn off that mess. Come here! Turn off that light!" Never a request. Never a "please". My dad enabled her, which was his and her bargain, but I suffer the consequences.

Hi everyone. A few months back I joined this forum because I had just retired and had to look after my mom. It was very difficult because she had just started suffering from dementia. Very stressful for me. I lost weight, my hair fell off. She went to live with my sister overseas. It has gotten worse. My sister is now looking for a nursing home for her because my sister is getting sick due to the stress. Numerous incidents where the police got involved to help my sister to control her. As much as it breaks my heart not to keep her with me, we have no choice. We do not want to end up getting sick as a result of taking care of her. I appreciate all the ideas and suggestions I was able to get on this site. I will be unsubscribing from this site and thank you all for allowing me to be part of this helpful forum. And good luck to you each whatever decision you make in the future to resolve your situation. Thanks again.

Dealing with my siblings. Their lack of understanding of how draining and frustrating it can be on me. I live with mom 87 and dad 85 who has Parkinson's. And of course when they rarely visit the parents are so sweet and nice!

Its 4am. Thank God for this site. This job never ends. No help, only advise. I want my life back. I feel like the witch on the Oz. Always unhappy. Never smile. Always tired. Just getting meaner and fatter day by day. Wheres my brother. Hes her favorite. He can have her. 2019 is my year. Me, me, me.

having a fantasy of just walking out the door , no plan, no suitcase, no cell phone......my husband is 91, we have been doing this since 2005. Most of the time I feel anger or guilt. I have developed a tremor that is stress related. Time to make a gratitude list .

No one LISTEN$!

The worst for me....not knowing when it will end and then knowing I will have to deal with harsh siblings when it finally does.

I find it really difficult how unpredictable this disease can make them.at times she is calm andlikes her music and lets me care for her.In a split second she is ripping off her diaper and screaming maniaclly while smearing the contents all over her bed and hitting me and trying to scratch and bite when I try to clean her up. I cant predict how she will be if there are a lot of people in the mix.I just try to keep her to a strict routine and hope for good days.

The family. Especially the husband. He continues to cry about how much he's lost. Lost what? He can still drive. She can't. He still work's, collects a paycheck. She can't work. She no longer has the day to day conversations of coworkers. No one comes to see her. The "feeling sorry for myself" family.

angela, why are you doing the caregiving? Do you know it will get worse (unbelievable, but it will)? Is there any reason why you can't get her somewhere nice besides with you?

Husband has PD with moderate dementia. It feels like the walls are closing in on me, inch by inch. Whenever I adapt to changing circumstances and accommodate to our lives together, my husband's continued decline challenges me to adapt anew. I also feel guilty that I no longer love the person he is today, whereas he was the love of my life for years. I am lonely. This all reads like several responses, but to me it feels like a description of a singular, continuous experience.

I'm very sorry to hear that. One because it seems you may not understand she is incapable of that kind of feeling with her condition. At least not anymore. It would be good for you to find a person to person friend to talk too. I've heard of support groups. That may also be of help to you. I wish you all the best.

Narcissism must be a close cousin to dementia!

This site is a life saver - and some of the responses here have made me laugh out loud!  All of this insanity we have to endure!!!  I can so relate.  It's amazing that the caregiver duties usually fall to just one person - even if there are numerous siblings. 

I guess the one thing I miss is my FREEDOM!  I want to be able to go out into the world, explore, meet interesting people, see amazing sites.  Instead I work - go home - do chores - work - go home - do chores...you get the picture.  I'm also terrified as to what is to come.  I'm single and refuse to give up my job/home in order to take care of her.  Actually she's living with me but at 92 how much longer can she stay by herself all day?  I resent the fact that she leans on me so freaking much - and has all her life.  Yes she is the epitome of the "Narcissistic mother".  

Case in point - I wanted to retire to my room and lie down for awhile.  My back was aching from all the chores I'd done that day.  Wash car, scrub bathrooms, rake the yard, etc.  She actually acted mad - I felt so much anger after that.  And it's effecting my health.  My heart rate goes up and I know it's not good for me.  I try and stay patient but MY life is passing ME by.  I sometimes feel by the time she passes I'll be too old and broke down to do the things I want to do...hike a mountain, go river rafting, fly to Europe, etc.

I regularly see this Question and I would say I missed my Freedom most of all, to be able to decide what I wanted to do at any given time. Oh but to sleep deeply for ten divine hours, undisturbed. Family Members standing back while never offering to give me two or three days time out, yet pretending to be so concerned by it all as they play with their
new up to date I- phones as they drink coffee. So called Friends calling to visit in a stiff Corpsed pose while aware that Mother had alzheimers yet they imagine it to be leprocy and their first Question is WELL HOW ARE YOU KATIE ? Ah sher I am as good as I'll be now at 87 years Mom replied. Next WELL YOU ARE LOOKING ABSOLUTELY MARVELLOUS...........and more which honestly I found it to be
testing, and Mother used to feel exhausted hence I would very politely asked them to leave as Mom needed to go to bed and I would assist Mother to undress just shoes and socks and the tracksuit pants as Mom did the rest and I would have tucked my Darling Mother in and kiss Her goodnight. Then We would have recited the Holy Rosary together like We always did and more Prayers hence It was no surprise to me to find when God called Mother Home to Heaven She died with a most beautiful smile on Her face and I knew Mom died happy, pain free and peacefully. Rest in Peace dearest Friend.

My mother is the person I care for. She, too, had become egocentric. I find it difficult to deal with as i am the only person who cares for her and she can be SO abusive. She is 84 with dementia. I am almost ready to get her into a facility. Very challenging.

What bothers me most is that I know I could do so much more if they would just let me. I have the opposite problem that many have - while some experience burnout because they don't have enough hours in the day to do what their parents want, my parents just want me to leave them alone (while they live in filth, hoarding, and with out-of-control, huge dogs that are not housebroken. The house is like a giant potpourri of trash, dog waste, and ammonia! Repeated hospital stays for falls, infections, injuries.) They know their 'legal rights' and thwart my efforts to get help at every turn.
I feel so envious of those that have a parent that actually WANTS help! (but yes of COURSE I know that's impossible too and I should be careful what I wish for!!)

The front row seat to an awful disease and the fear of living it myself after watching it - the terror my mom experiences at times is relentless and exhausting and I cannot fix it

I guess some things never change. 2014 an here we are with the same problems. There is no one thing. As one lady put it, it's like living in the twilight zone! So many things to deal with today, an tomorrow you might not even recognize that same persons behavior! So keep a positive attitude, an know you have done the best you can for the day, an pray, that in the future we are recognized an paid as they would pay for running a nursing home. In turn we would be able to hire some of the work done, an less stressed, an likely to survive as a caregiver without serious health issues.💝 Love to all the caregiver warriors💝

These stories scare me! I'm not a care giver. I don't think I can care for my mother when its time. I love her, but she expects too much already. She thinks I should quit my job at 50-55 and take care of her full-time. We don't get along....at all. She insist I should move where she is and pretty much move in and give up my life. I can't stand being around her now when she is healthy....not to think when she is sick. Help! She refuses to go in somewhere when its time. She has tried to work me my entire life with guilt. I have a lot of anger towards her.....I don't I would be fit to take care of her. I think I would be mean....I'm worried about what kind of a person I would become. Help

As long as you don't prop her up and support her unrealistic attitude she will eventually have to accept other alternatives mathisawesome. Your choice is to be strong and accept her wrath in small doses or be weak and suffer continuously for years... it's a no brainer.

I can sympathize with this question with a little different content. My mother is 90 and had a stroke 8 months ago. It's been a LONG HARD ROAD..... My mom is not a real "Bitch" per say and she isn't really demanding BUT she is losing her short term memory. What happens with this part of the disease is that I am with her taking care of every single detail of her care. BTW I have two older siblings brothers who do NOTHING!!!!! I cannot even give them kudos for visiting because 1 has a business in the area we live, but comes to say hi "when the wind blows him in the direction of her home". Maybe 2 times a week (if that) My mom says "he doesn't stay long enough to fart (sorry) so she gets frustrated. The other sibling is 68 has lived with her for the last 30 years and has no had a job in decades. He has lived off my father (he is from a different father) and my mother for his entire life. We have been home from rehab since April and he has not even once come to her room and asked how she was doing. Never has and most likely never will. Both have wished my mom dead because for them this is just hard to deal with. When I heard these words I literally almost fell over. They have never ever ever done ANYTHING for my mom or given me a 10 minute break anytime. They are useless. I have learned EVERY detail of her care, I slept with her in a chair for three months in the hospitals ( regular and rehab) and I know everything about her health care, her thinking her heart everything. So I have become the scapegoat for everything. All I wanted to do was to take care of her, that is it. The depth of the stress they have put on me over the past 8 months is appalling. I pat myself on the back for raising 5 children on my own who have compassion, conscience empathy and love for others. Unfortunately I got it but they have NONE. They say they want their life back and I don't see them for days and days, which ends up being fine with me. My older brother was responsible for getting the groceries, medications, vitamins, other pills and medical supplies such as diapers, wipes, gloves, etc etc. I made notes and he would go to get them. Well that went to crap in the first few months. He went to the store or pharmacy whenever he felt like it. I waited 16 days for diapers because he just felt I could improvise and use something else. My mom suggested I get my own debit card to her account so I could get what we needed when they were needed. It was fine for about 2 weeks then I got reported to Adult Protective Services for misusing my mothers money. I was presented with a Domestic Violence Restraining order and was kicked out of my moms home for 21 days until we had a hearing. I tried to get the court to understand I was the only one who knew how to care for her but they said I had to wait. When my disgusting brother was unable to get his game playing retraining order I got back to my mom and she was close to death. She had not had a BM in 14 days no injections for her stroke prevention. Her blood pressure was 210/180 I called 911 and had her taken to the ER. She had infections in her entire system. Kidneys, intestines, Urinary track and bowels. She lost her ability to urinate because the impaction had closed off her urethra which cause it and her bladder to swell. She now uses and will most likely need a catheter for the rest of her life. It's a shit show I go to my moms house every single day and face consistent stress and abuse. ( BTW i should mention Im on the heart transplant list which was supposed to happen in Feb when she had her stroke.
I don't know if I can keep going. I have kids and grandkids who I never see, I cannot leave her alone with either of them when I was in the hospital for a couple days this month she got no meds, not even a toothbrush. Its a sin and I can do nothing. My brother says there is not money for a caregiver so every single day is MISERABLE I feel for all of you who have taken on these roles.