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

John, at first I thought that was just too much information, but then I shrugged my shoulders and had another bite of my dinner. Only another caregiver would understand... lol

Sorry. I don’t. And I won’t. That’s too much.

It sounds like your mother is a narcissist. That is maybe just about the highest caregiving challenge. Maintain your boundaries. Take very good care of yourself. Do not let her get to you. It can be done. Don't even try to get her to care about you. She will not do it. I offer you hugs and all the support I can. This is tough. Hang in there. Hugs..

My father does not have dementia, his body is just failing. He is mentally sharp otherwise, but he has totally hijacked my whole life. I no longer have a life. He has zero appreciation, only expectation...and he has never had to care for anyone in his life, he won't even do anything to help take care of himself. To top it off, I have been outside his door and heard him saying bad things about me to his buddies on the phone. I also know he says bad things to the neighbors.

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I’m 74 and on good health, just a couple of minor issues! I’m concerned That I may change and become unmanageable! I don’t want to live and burden my kids if I lose the ability to think clearly!

Beebow,

I think everybody with a conscience is afraid of the same. Personally I am afraid of two things, one is not to have a soul that even worries about me when I’m old/sick, but it actually worries me even more to become a burden that steals life form someone’s existence! Quite an irony.

I'm living with my son's grandmother. Her son & I never married & he was killed at age 17. When i first came to be with her it was because I owed her amends. I stayed 10 months, went home, stayed a year and was asked to return because her cancer was back. I didn't want to come but came anyway. I'm her live-in caregiver. She told me b4 I came, you don't pay no bills or buy food, I'll do that. I came with $1000, it was gone in 2 months. I accept all responsibility. I apply for my SS, got it right away. I've been here 11 months today. Up until 4 months ago, she had me going to food banks, churches for food. When I came, if I didn't put food in the house that's what we ate. I like fresh meat sometimes. Then it wasn't out right asking for money but I would hear: "well, I only get a measly SS check and I can't afford this or that, then I find out she ordering $150 dresses in the mail but we eating from food banks. There's 2 son's left. One on drugs & living on the streets, but he gets a SSI check & Foodstamp, but she asks me to take her to see him. He's lost weight, he can eat the ribs I brought or we can invite them all for ever holiday and I can cook the food. I had to put a stop to this. The other son in a NH with mental disability issues, but she expects me to take her to see him, take her to his doctors appointments, pick him up take him riding, look up his medications, etc etc. I had to stop this. I feel so mean, but I'm I'll too. I take her to cancer treatment & doctor, kidney doctor, eye doctor, regular doctor, foot doctor, ear, doctor, heart doctor, take her to the stores, pick up medications, at least 6 days out the month, back n forth to stores for simple stuff, (I have cut down on this too) she would send me cross town for a plate of food, then talk about the food is nasty, and she has only paid for gas 4 times since I've been here. If she loose her cell phone, i tell her to call her number b4 she asks me to look, so instead, she's on the floor looking under the bed & can't get up. My back has been hurting for 4 days getting her up. My last time, next time I will call 911. We at pharmacy, she doesn't remember her pin number, I'm standing 3 feet behind her, she had the young lady come from behind the counter to do her card but still couldn't remember her number. I said do no pin. I asks, why didn't you tell me? When I ask you to do something, you say no, so I tell myself, I'll never will ask you. I think and feel in order to salvage the little relationship we have left, I've decided to return back home. My home was destroyed in Hurricane Harvey, but I can check into a FEMA hotel. Her family can step in or whatever, but I'm sorry, I can't do this anymore. It's not fair to her or me, because I really don't want to be living here. I love the city, but it's hard being a caregiver and a live in. Caregiver/Provider get to go home, but a live in its different. . I've made my decision and I have gotten her calendars together and her new provider/caregiver can work around her doctors appointments, she's 86 and can catch the senior citizen bus there & back and she can get a 4 hour companion in her city, that's 7 hours and her family can deal with the other hours.. Am I being selfish. Please tell me what you think. Yes, I'm angry, I'm feeling used although I started the ball to rolling. I have walk up on her telling people, she don't have a ride to the functions she's invited too. I have missed attending her church maybe 4 Sundays since I've been here and I don't attend church in my own city like that. And Sunday School too. I haven't discussed my Provider duties which are only 4 hours daily, 7 days a week, and she don't like leftovers, and she feel I should mop daily. I'm just tired. Her family has been over about 6 times this year. I have to bring her to them. I need to go and see about my home that's been destroy to make a choice on repairing as FEMA says or finding another place to stay.

Brenda, I don't understand why you let yourself be sucked into this in the first place, she is no kin to you other than through your son and it doesn't sound as though anyone in that family has ever made the choices needed to stand on their own, it is all dysfunction with a capital "D". You've been more than charitable for far too long, it's time to look after yourself and to hand her care over to State agencies.

Lol. I have to laugh to keep from crying sometimes. I understand what your saying though. I hear my son's grandmother calling friends asking about their well being and when I'm really sick, (I work while I'm sick) I can't get up (Vertigo, Sugar or blood pressure high) and she think I be just lying around, never ask if any thing is wrong. When I'm feeling better, oh you took a day off, I'm like no, I wasn't feeling well, ( I've trained myself to work while sick if im able to still stand & move, no big deal, I've been through worse, lol) Oh you should have said something. Lol, I've told her this several times but I'm good. I'm back in the trenches for now. Thank God.

You have your own health issues. Your back has been hurting for four days because you got her up. Did you know that 30-40% of elder caregivers die before their charges?

What exactly is it that keeps you entangled with this woman? She's not your responsibility.

Caregiving! It tears at ones emotions, takes away our freedom, lays guilt for feeling this way, added responsibility, puts our life on hold, changes our personality, causes depression, can make our own health issues worse, shall I go on? But it's necessary because we love the person we r caring for so we lay aside our needs to do so but it doesn't make it right or easy.

When my dad refers to me as his nurse and secretary. I feel like I'm doing the work of a Chief of Surgery and a CEO, all on a volunteer basis.

I appreciate people asking how my mother is doing, but I wish they'd ask how am I doing.

I hear you, RogerMOkie! I'm my Mom's live-in caregiver having left my home empty. My siblings have told me in no uncertain terms when they're here, they're "here for Mom." My siblings pushed for another relative to stay a day a week here (and get paid) but my siblings were incensed when I (how dare I!) had the relative do some light cleaning since Mom sleeps most of the day. "She's not here for you."

I am the daughter in law. Her own children just don't have the patience or the same set of values I was raised with. If I get out once a week I am treated like it's a favor to me.

Kkillen,
Go look up the thread" I'm so disheartened and angry". You will be interested in this one I'm sure!

Not accomplishing what I want to do during the day because father needs/want me to help him.
He wants to go out at night when i want to relax.
He smokes
On the plus side, i try to compromise. I chose some days and nights to go with him places. And times for me and my husband to do what we want. It's interesting that this situation makes going places more enjoyable because you are doing something. There use to be days when I didn't go out because he wanted to go out and needed help getting ready. But now I go out more, thank G-d, because I now work in the morning and then run an errand before coming home.    
He likes to have us near him at home, but my husband and i have our own guesthouse 5 blocks away. He says why pay rent when you have a place here. btw, he's almost 78 and thank G-d still able to do things like make breakfast. However, things like bending down and picking things up is difficult for him, and dressing and walking outside. He always enjoyed traveling and now he doesn't drive anymore. It depresses  him and feels no one is helping. I try to take him places, but sometimes I want to do my own thing, or be with my husband.  

I'm 72 and have been caring for my Husband who has Alzheimer's diagnosed in 2014. It actually started long before that but no one believed me until much later.

What's the hardest thing about caregiving, it's being alone. Yes, my Husband lives with me but I'm alone. I have no one to help me make decisions but myself. He has a large family who could take him out or try to involve themselves by at least visiting him. If they do visit, they all show up together and spend about 45 minutes maybe. Friends don't come either. It's not pleasant to see your loved one or friend with Alzheimer's but you shouldn't abandon them because of it.

Another thing is those who seem to think when they see him out that there's nothing wrong with him because he talks to them, jokes around etc. He can put on a good show but believe me, he's not okay and I'm not either.

Next is all the good advice I get about what I should do. Have they dealt with It? He eats 24/7. Is that good for him? No, but he's able physically and I can't stop him. He puts trash everywhere, hides things, stops up commode and it ran over, didn't tell me, lines up 3 and 4 glasses full of drink that is often wasted, takes things out of the freezer and puts them in refrigerator, pours drink in a decorative pitcher, puts trash in a 3/4 full Pepsi, pulls out stuff from drawers, put peanut butter on bread and toasted it, and on and on l could go, these are just a few things that happened lately. Its very hard to not say anything. It's a struggle to get him to bathe and he is able. I get excuses that he just took one or he will in a minute then he forgets and goes to bed.

While I don't want to see anything happen to him, I wonder if I'll spend the rest of my life being a caregiver not being able to get out except have to situations. Then I think about my Husband and the life he is dealing with, which makes me feel guilty I'm feeling that way. I tried daycare already, he didn't want to go back. I will try again if I can get him to go. I plan to look into some home care but do not feel he would let anyone help him unless he is physically incapacitated. A nursing home would be the last resort if he became incapacitated or something happens to me. So, it isn't a pretty picture for me or him but I do have my families' support and can vent my frustrations.

That I can't fix anything for my loved one. That no matter how much time and energy I put into doing something, any benefit is only temporary until the next shoe drops and the cycle of identify problem-apply resolution repeats all over again.

Dear John6749 & cwillie,
Thank you for a good laugh. It was just what I needed at this moment in time. You are right when you say only a caregiver would understand. I have done things that I never thought I would be doing. I regret the times that people I knew were going through this and I didn't listen or do more. I had no idea how your life changes.
My siblings don't understand either. I can tell them things, but they are not the ones involved day to day. My daughter is more involved and knowledgeable than they are.
Thank you again for the laugh.

My sister and brother being absent and my sister criticizing, correcting, accusing, and making me the bad guy when I’m the only kid that’s been here. We’ve never been close but she has crossed so many lines now I am actually scared of her.

My home is no longer my sanctuary. I long to have a family member come and take my dear, 95 year-old mother away for a month, a week--two days, but she would never leave. She feels so safe here, and no one else wants to assume the responsibility. Once in a great while a family member comes to spend a few hours with her, but it is still in MY house and infringes on my privacy.

For me, it's being trapped...No privacy, respite, it's all about her and nothing else. I've long ago given up on fixing her...at 90 it's not realistic. Tough thing to come to, but necessary for sanity. Her end is getting clearer, but how long til then, of course, is unknown...a month, a year. It's likely within that time frame. I struggle to cope with her adamant refusal for any help. My husband and I have stopped offering....waiting for it to get bad enough for her to ask or tell us what's wrong. God speed everyone...together supporting each other we shall survive!!!

That my mom cant do almost anything for herself and then she lies thats she is eating or taking her pills. Also that caring for her and providing for all her needs takes up almost all my time.
I neglect myself and my needs to make sure she's happy no matter what!

The one thing that bugs me about caregiving? I can no longer be impulsive and just pick up and go. I was always a care free person, but this anchor tied to my feet is getting pretty darn heavy.

My 92-year-old mother's constant complaining about pain is driving me up a wall! She had back surgery 18 months ago and ended up with a serious blood clot in her leg. After 3 months of blood thinners, the clot is controlled, but she'll always have pain and some swelling in that leg. She's had physical theraphy for several months and can now get herself in her wheelchair and toilet herself (which is great progress considering where we were a year ago). But she whines and complains every single day. I've begged her to stop, demanded, yelled, threatened to send her back to the nursing home....she says she'll stop, but the next day, it's "Oh, my foot hurts..." I feel guilty, but I have no family nearby and only a home health aid while I work during the day. After giving up my life to care for her, I am becoming resentful that she seems to have no gratitude or appreciation about what her complaining is doing to me. I will feel guilty forever for putting her in a nursing home, but I can't find another option. No, there are no caregiver support groups in this small town I live in, so I have no support.

Lack of independence, privacy and giving up much of my own life

I think the most troubling thing about care giving is the lack of support. I’ve fondly love this forum. But in the real world no one ever ask how are you doing? They only ask about the patient. And the patient usually is so drugged up and in pain they can’t even tell you thanks. It’s been 11/2 yrs and 2 back to back total hip replacements and I’m still waiting for a thank you from hubby. I guess it will never come.

I think the worst thing is that there is truly nothing I can do about what is happening and knowing this is not the way she would want things to be either. No time for me or my family, but they understand. Sibling wants to help, but just has trouble looking at the situation when it is really bad. It helps to remember all she did with me and for me as I was growing up. I try to live in that alternate universe in my head and remember the good times. Sometimes I even ask her if she remembers, sometimes she does and it helps to laugh. Most times no, but I still have my memories.