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

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

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I watched my mother a while this morning. She was more confused than normal and fell asleep with a blood pressure machine in her lap. I thought the hardest thing was watching our parents die for several years. I thought of how it used to be just a few decades ago. People tended to die fairly quickly with things like stroke or heart attacks. It's different now. My parents' last years have been like decomposing slowly in place. It's a helpless feeling and a life-consuming feeling. It feels all wrong, but we're at this point in time where life is longer, but health has not kept up.

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Reply to JessieBelle

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So many answers, such large type, its hard to find whether I answered this or not. Mom is gone now, and its a relief for her, for us but I miss her, who she used to be. What is the worst part? 1) feeling responsible for their happiness 2)feeling like you can't go anywhere or do anything without worrying about whether they will be ok 3) the frustration of dealing with someone who seems deliberately to fight you at every turn 4) repeating yourself in a loud voice constantly 5) watching the slow deterioration and knowing that this is what you will become 6) the sadness of losing your parent many years before you physically lose them 7) the guilt of feeling angry or frustrated even though you know they can't help it 8) knowing there is nothing you can do to make them happier or healthier

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Reply to AmyGrace

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I think the thing that bothers me most about caregiving is the disrespect from others. Disrespectful family members who know nothing about conditions on the ground but make their opinions known anyway. Disrespectful siblings who believe that because they are siblings that they know by osmosis. Disrespectful health care providers who are eager to be heroes by prolonging someone's life through chemistry without any consideration for the patient's quality of life. Disrespectful outsiders who think caregivers are mooching off their parents when in fact we alter our lives to do what they are unwilling to do.

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Reply to NYDaughterInLaw

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The disrespect from the person themselves is also hard to handle. This afternoon I sat down to visit with my mother for a while. The telephone rang once. We have nomorobo. It rings once when we get a robocall, then hangs up on them. My mother was across the room, so wouldn't have been able to answer it, anyway.

She said she wanted me to take the service off the phone because she didn't like it and it was costing her too much money. I told her I paid the phone bill and the nomorobo was free. I added that it was me answering the phone since she was never able to get to it.

She just got mad and said that she wanted it off. It was interfering with the calls from friends. I assured her it didn't, but I may as well been barking at the moon. All I could think was that I try to keep her company for a few minutes and she starts a battle. So I got up and left. You can't keep company with a person who acts like they don't like you.

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Reply to JessieBelle

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jessie - I sympathize, If you try to do something nice they turn it into a battle. A few years ago I was visiting mother and invited her out to lunch at the best hotel in the city and a favourite of hers. We were sitting in the lobby of her ALF waiting for the taxi, and she started in on a controversial topic. I gently stated my opinion and she got mad, tried to argue and glared at me. I quietly answered that we would just have to agree to disagree, and she glared harder, but she did not pursue it. Had she continued I would said that it looked like lunch wasn't going to work, got up and left. To heck with it. As it was, I kept wondering through lunch of she was going to start up again, and I could hardly have left her there as she needed help to get back to her ALF. I think it was the last time we went to lunch as the VaD and paranoia started kicking in. People with personality disorders, are by definition, very hard to get along with. D*mned if you do and d*mned if you don't.

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Reply to golden23

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Today I blitzed through several personal care needs for my mother; shampoo and rollers, shave, trimmed her fingernails, lotion for her face and medicated lotion for other problem spots and ending with a sitz bath. All of these things are simple enough to do and I feel a real sense of accomplishment getting them done, she's generally a real sweetie and appreciates what I do. Unfortunately as soon as we were done and I tucked her in for a nap the crazy calling reappeared. I know her brain is effed up, but I can't help overreacting to her vocalizations, the mental dysfunction gets to me every time.

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Reply to cwillie

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It's like a baby's crying, cwillie. We can't tune out someone's calling when it sounds like they're in despair. I wish we could turn off our brains sometimes.

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Reply to JessieBelle

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Golden, it's little things that mount up and break down relationships. With my mother if I said I felt one way about something, she would take the other side just to argue. She loves arguing like it's a form of communication. I don't like it at all, so am not going to hang around and do it. I don't do a lot with my mother. We go to church and out to eat a couple of times a week. I spend a little time with her every day, but it is impossible to talk to her. She's either telling me stories for the 500th time or arguing. It drives me crazy. I wish she had some friends she could talk to so the pressure would be off of me to keep her company.

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Reply to JessieBelle

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There was never enough of me.I never stopped and never got done and no matter where all we'd already been,Mother was never satisfied and wanted to do more and go more places and she had no idea how much more lifting and loading she created and how hard it was on my body.But even though this bothered me,I'd still give anything to go back and do it all over again.

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Reply to luckylu

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Wow! I sure wish I would've found this website sooner, but better late than never. Part of me feels like I shouldn't complain after reading so many others stories. My folks are 88 years old, and my mom has dementia. My dad is her primary take care taker, yet he has congestive heart failure. I am one of four kids. I am the only single one, the rest have their families, their jobs, their children, and some have grandchildren. I have kids who are grown and out of the house. God does everything for reason and I know that. When I decided to buy a condo, there was one in the same complex as my folks, and it was a steal! So, with that being said I live about 2 1/2 blocks away from my folks.
My mom was never a pleasant person, she has always been very mean, demanding, and very much a pampered princess! Now she is in a wheelchair, needs help doing everything, other than feeding yourself and talking! I am the one out of four kids who is they count on. I myself have severe rheumatoid. I try to be there as much as I possibly can for my Dad. So, now the fact that she's mean, and nothing I do is ever good enough, I'm suppose to just look at her and say, "well she has dementia, she can't help it!" She is meaner than ever, and my Dad still jumps at her every beckon call? She is the love of his life! ( although I often wonder why)
I do much much more than any of my siblings to do, and I am there much more than they are, I would call myself a secondary caretaker of her, my Dad being primary. Yet, I feel so stifled, because if I'm not there I feel guilty, and if I am there I can't wait to get home. When I'm there the TV is on full blast, it hurts my ears! And she yells at me and tells me that something is wrong with my ears! She says the same thing over and over again and asks the same questions over and over again. Which yes, I know it's all part of it.
I try to get my dad to get out of the house when I'm there, maybe go out to lunch with a friend, that way he can really get away from it. I know he needs a break. If he's there, she's barking orders and complaining!
She incontinent yet, won't wear depends. I try to keep up with the laundry, changing their sheets, doing the cleaning around their house, making meals and freezing them, so my Dad can just heat them up. The entire time her telling me I'm not doing it right, or to stop that she'll do it later.
So, back to the original question; what bothers me the most? I think the guilt that I feel for not wanting to be there. The resentment I feel towards her when I am having so much pain and fatigue from my rheumatoid, and would love for someone to take care of me just for a moment.
Thanks for letting me ramble and vent!

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Reply to Vwagain

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Definitely the lack of help. Seven kids and only one would help me take care of mom.

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Reply to katiekat2009

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The way my mother doesn't appreciate what I do for her, and the way it is assumed that I (the only daughter and only local one) am expected to do things for her.

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Reply to CTTN55

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no one ever comes to visit mom and they live nearby.
no one visited dad but stole all his money.
I now have PTSD from caring for them.

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Reply to micalost

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There are so many things that bother me about caregiving, but you ask what bothers us the MOST. For me, it is the hopelessness of the situation. It will only get worse & could last for years. There is no way out and I feel so trapped as my 2 siblings live far away & never help. All I can do is take it one day at a time.

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Reply to helennnn

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Hi and I get it...I could be standing within earshot of mom and she has selective hearing...Sometimes she says loudly huh? And if what I was saying was important I'll repeat it..If not, I'll just walk around to another room..But will she go for a hearing test, nope. And don't even mention hearing aids..She has a fit! It's my fault, the way I talk, she says. Well, when dad was alive, I took him for a hearing evaluation and I got one too. He just SAT there and told the audiologist it is the way I talk (being a nurse I realize you have to stand and face the person so they can read your lips and to not shout at the person). So, the audiologist told dad that I speak perfectly normal, but because the little hairs that assist with hearing have, on him, been chopped down. (that's from using a skillsaw many years ago without ear protection).
And mom's hearing, well she hears what she wants to hear. I worry about her driving, too. She said the other day a man stopped her and asked if she "rides the brake" she told him she has to do that...! Now people have road rage and I worry that someday she might have an attitude with the wrong person, but she doesn't care..Her neurologist wanted her to take a driving test but she refused...That was back in 2010!!! She is a very stubborn woman...Now that's what really bugs me..She complains constantly..I get tired of it and make a suggestion and then she gets mad at me for telling her what to do...So now, I tell her I can't tell her what to do it's all up to her..And she tells me You're no help! Can't win for losin'...But last night she was sitting on her bed I happened to walk by her room and she said she couldn't catch her breath so I got the rescue inhaler and gave it to her...I mentioned she needs to go to the ER but nope, she won't go...She has bad bronchitis, and I hear her in the bathroom now coughing it all out or trying to, but she's getting ready to go to work when I told her last night she needs to be seen. she should file for partial disability and cut down or even quit her job because of her bronchitis hanging on...She has trouble with the steroids..I told her last night to go back to the pulmonologist and she yelled 'well how many doctors do I have to see!!!
So I tried to explain why the specialist and she says to call and make the appt.!!! But then she always canceled...So it's a losing battle..She says the doctors just walk in the room and don't tell her anything so she doesn't know what's going on..But yet when I offer to go with her she says no she'd rather go by herself...Argh!!!!!!! So, that's my rant!!! So, with that being said I just throw my hands up and call it a day....Then I go meditate or listen to the commedien John Pinette on you tube...Then there's the music..Sometimes I just have to throw on some earphones and tune her out...She's safe, fed and watered, and doesn't need anything so then it's me time. Hope this helps and Thanks for reading. So thankful for this site.

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Reply to Tumbleweed39

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Loss of freedom and choices, being a prisoner to the needs of this depressed person who either can't or won't do anything for herself, at the mercy of insurance company and their stupid refusal to pay for more aide hours, and shortage of good aides so sometimes no help at all!
SO POWERLESS, and SO IMPRISONED/STUCK!!!😕😢

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Reply to goodenergy

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My biggest gripe was when Dad would begin treating me like a servant instead of his son. Mom always did everything for him, and he, after asking me to move in to help, expected the same from me. We would go along smoothly for several weeks, then an explosion about me not being his slave, and him not doing things he could for himself. I'm a 60+ retired man not a 6 year old being sent to get the old man a beer.

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Reply to didntknow

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didn'tknow - I definitely relate to that. I had the same argument with my mother many times, and the infuriating part was that she would never acknowledge that she was doing it. She really does not know how to ask for something without making a demand. She really doesn't view the caregiver role as voluntary and something we do out of the goodness of our hearts; rather, her children are there to do her bidding and carry out her instructions, very much like when we were 10 years old and living under her roof. I have given up trying to make her understand the difference between a request and in instruction. The best I'm ever able to get is a polite instruction, such as "PLEASE take the garbage out right now." I deal with it by limiting my contact with her as much as possible, because it aggravates the heck out of me (to put it politely).

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Reply to CarlaCB

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I wanted to add an edit. As much as I struggled with my Dads' entitled attitude and regretted the arguments, I would give anything to have another chance to help him. He passed away 10 days ago, and I am lost. I used to think that my life had been destroyed when I moved in to help him, but now realize that it is probably the best thing I have ever done.

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Reply to didntknow

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Speaking solely for myself, it is obvious they are no longer the person who they once were. If they were kind and loving, it makes things so much harder for the caretaker to see what is going on with them. However, the aging process changes us and when they get abusive and nasty and crabby or ugly in other ways, and have no memory and do stupid things and repeat and repeat, I want to scream. That is when I draw the line and say no more - it must end - and I do whatever I have to do to stop it. That includes medications, counseling for me to cope, etc. but if nothing works, then I have no choice but to remove them and put them somewhere that they can be cared for by people trained to do this work. I personally cannot tolerate the ugly part of this problem - although I know there are people who can - they are saints if they can do it but not everyone can handle this. In the end you have to thing of YOU and what will happen to you if you don't take care of the problem. Are you willing to be destroyed?

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Reply to Riley2166

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I didn't have to read the whole thing to realize you're dealing with a narcissist. I've had my own share of experience with narcissist and everything is about them and they care nothing about you or others. You need to drop them like a hot potato and cut them off and move on or even send them packing. They pick on the weakest link possible through a grooming process no one sees coming if they're not familiar with a narcissist. One thing to look out for is they will drain you financially dry and take all they can never get back. The only way to cut them off is no contact after cutting them off but you need a support network to be able to help you maintain the no contact order

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Reply to Dad_Was_Robbed

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For me, it was the lack of validation and acknowledgement from my siblings. I did most of the work and I couldn't even get a how are you? I had a lot of resentment and anger about having all the responsibility. And I started to feel taken for granted. I couldn't even get a please and thank you from my own parents. They just expected me to be there and because I'm such a pleaser, I did everything. But in hindsight it was a terrible mistake because the anger takes hold and affected my judgement and compassion. I should have gotten help for myself sooner.

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Reply to cdnreader

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A person suffering Alzheimer's can't help the way they are--it's a slow terminal illness. I keep everything on schedule which helps and I take her for daily walks with her walker. Seven days a week. So she won't get bed bound. I have a feeding and bathing schedule. Sometimes she refuses to do things I have to get very firm. I can't let her sleep all day or she will be up wandering all night and falling over. Yes it is hard but I remember I only have one mom and I'm glad she is still with me.

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Reply to cetude

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I read through this whole thread and found the answers very helpful (I wasn't on here three years ago). It helps to know that I'm not alone.

Where do I begin - hard to say what is the worst, the isolation, feeling like I will never have a life (as my daughter went away to school, next I have to take care of mom), the guilt over wishing I did not have to do this, that I could have a life, knowing that I am not good at this at all, getting impatient when she gets confused and repeats and repeats and repeats, feeling guilty because I hate cooking and housework and especially potty duty, resentful because basically my life is over (sorry for venting, but I'm already going through the anticipatory grief and realistically, after years of caregiving, there will not be much left), resentment over how my physical and mental health is so much worse (and I don't have insurance so can't afford to run up medical bills).

Often I don't know when I'm being self-indulgent in hiring more help or if I really need to do that to preserve what is left of my health. There are times that I don't do the chores both because I am exhausted and because I want to escape. And I feel guilty for that, and guilty because I really do not enjoy caregiving, but some day I will really miss her.
No one ever told me about this. Caregivers suffer in silence.

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Reply to Dana235

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Having to give out morphine and other drugs knowing it is the end of life!
"The comfort kit"
Haldol especially!!

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Reply to 1angelnblue2

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Not knowing if this is just my narcissistic mother or some form of dementia. Mom refuses to see a dr. Primary care just shrugs and says she is fine. MMSE (mini mental state exam) score is normal. But I know there is so much more to dementia than this silly little test. I don't know if a diagnosis would even help. In one way it would ease my feelings that I am being used and abused by her. In another, it is very scary. But having that diagnosis would help us plan for her future. Cuz this girl is getting off the crazy train soon!

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Reply to Momsgoto

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Siblings not sharing n the responsibility equally. Also, feeling quilty when I just want this to all end. My mother's memory is fading and she asks me the same questions over and over. I know she can't help it and I should just answer her like it's the first time she answered the question but I find myself say, you already me asked me that and I told you, blah, blah blah. I can only take it so long then I let her know she already ask me. My mother is with me 4 1/2 month full time and relies on me the other months more than anybody else. I am getting angry with my siblings and it doesn't do any good to talk to them. I feel like my life isn't my own anymore.

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Reply to karbar

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Siblings not sharing n the responsibility equally. Also, feeling quilty when I just want this to all end. My mother's memory is fading and she asks me the same questions over and over. I know she can't help it and I should just answer her like it's the first time she answered the question but I find myself say, you already me asked me that and I told you, blah, blah blah. I can only take it so long then I let her know she already ask me. My mother is with me 4 1/2 month full time and relies on me the other months more than anybody else. I am getting angry with my siblings and it doesn't do any good to talk to them. I feel like my life isn't my own anymore.

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Reply to karbar

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Momsgoto, I could not agree with you more. I know mom has dementia and I know she has always been manipulative. I just wish I knew where the line is. When she is acting out, is it the dementia and deserving of my patience or is it her old self and not deserving of me.

Also, she passes the in the office memory tests and showtimes so her doctor thinks I am exaggerating. But why bother taking her to a specialist just to get a diagnosis of something I already know.

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Reply to mom2mom

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My mother passed the mini mentals too when she was already showing signs of dementia. It is a grey area where GPs seem to think they are fine despite reports from family. When mother was finally thoroughly evaluated by a geriatric psychiatrist, OT and psychologist, it became very clear that she was suffering from vascular dementia.

The point of having a proper diagnosis is several fold.
Here are points from the https://www.alzheimers.org.uk/info/20071/diagnosis/104/why_do_i_need_a_diagnosis

Why do I need a diagnosis?

A thorough and timely assessment for possible dementia is essential in order to:

- rule out other conditions that may have similar symptoms and may be treatable, including depression, chest and urinary tract infections, severe constipation, and vitamin and thyroid deficiencies
- rule out other possible causes of confusion (eg poor sight or hearing), emotional changes and upsets (eg moving house or bereavement), or the side effects of certain drugs or combinations of drugs
- provide a person with dementia with an explanation for their symptoms, removing uncertainty and allowing them to begin to adjust
- allow a person with dementia to access treatment as well as information, advice and support (emotional, practical, legal and financial)
- allow a person with dementia to plan and make arrangements for the future.

If the outcome of the assessment is a diagnosis of dementia, it is important that the type (eg Alzheimer's disease or vascular dementia) is also diagnosed. Knowing the dementia type will help to understand symptoms, predict how the dementia might progress, and suggest how best to manage it. For example, certain drugs will be prescribed for Alzheimer's disease (but not vascular dementia), although these do not cure the condition.

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Reply to golden23

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

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