Why does the caregiver have to be the most understanding one in every situation?

I so understand you, OP! And I think you'll get hundreds of replies saying they understand and agree. By the way, I really think that many of the elderly LOs putting us through this, have never themselves cared for elderly LOs.

Someone on the forum wrote, "No one else will save you! You must do it yourself!"

This has become my new guiding words. It helps a lot to get empathy from others. In practical terms however, no one will save you. You must do it yourself.

Who is telling you this? Of course you have to be the adult in the room if you are caring for someone with dementia if their broken brain precludes them from acting appropriately, but IMO that doesn't mean you meekly accept abuse from them any more than you would from a child. As for siblings and other who want to offer their 2 cents - the most frequent advice I've read here is that nobody gets to tell you how to run your life, and you can't be a door mat unless you lay down.

This is a lethal combo--uncaring sibs and an abusive loved one. Lethal tto YOU.

Baby steps.

Make an end date--July 1

Identify resources (SS, pension, house, Medicaid). Find a CELA lawyer if you don't have one.

Identify level of need through a needs assessment--AL, NH, MC.

Identify 2 or 3 facilities.

Set YOUR move out date and details if you are living with mom.

Inform family.

If necessary, take mom to the ER for a social admit.

This is a rough plan, but I'm sure you can flesh it out.

Maybe its time to let someone else care for Mom. If siblings and others don't like it, they can care for her. I had my Mom for 20 months and she was easy. I found I am not a caregiver. My house was not good for someone who can't do stairs. Good or bad, my brothers didn't involve themselves.

I so hope in your position I would be able to stand up for myself. I don't like confrontation so not sure how I would handle your situation. I do know, if I was getting abused from both sides, I would be placing the LO someplace. Since I have no patience, I would have blown up by now for sure. Just because its a parent does not mean you put up with the abuse.

Your burnt out and only you can say "no more".

To: Exhausted One and Venting-

Its so good to hear you both telling honestly how you feel.
Its so important to do it and to know you're being heard.
Sometimes things get really tough and I have to cry.
I feel so very very sad sometimes
I can honestly say love hurts, the truth can hurt, and it needs to
be spoken.
Sending you much much love and encouragement.

If this is how you feel then you are in the wrong job

One day at a a time Sweet Jesus...you don't have to be perfect or a Superhero.

Sounds like you need time off...and more help.

You want to go out standing...

Amen...

If your family is shaming you and blaming you for not wanting to do this anymore then they are in the wrong. There are resources to help and if money is the issue you can call health and Human Resources in your state and they will direct you. At least you can get yourself in a position where you aren’t doing the hands on caregivering, and once that happens if you choose to still make sure that she is cared for and doing ok, then do that. It’s still caring and how my pastor put it to me is sometimes getting that person in a place for professional care IS the most loving thing to do.

Part of being an in controlled adult is to know when enough is enough.
If you no longer can handle the caregiving situation as it is you can back off and let someone else step in or up.
You can hire (the person you are caring for pays) caregivers that will take over some of the time and duties that you are doing.
Go find any article on caregiving and I think you will also find that taking care of yourself is a priority, BOUNDARIES are a priority. Burnout is real. No one can be a caregiver 24/7/365.
You will find that when you have the proper tools, and by tools I mean more help, proper equipment, boundaries are set and accepted that you can do a lot more and tolerate more.
BUT there comes a time when despite all that you have done if you can not SAFELY care for this person any longer that you need to stop. That may mean placing them in a facility that fits their individual need (Memory Care, Skilled Nursing, Assisted Living). If others in the family do not agree then they can assume the caregiver role.

Basically You have become the parent for the elderly Person who raised you . We live in a selfish society . Hundreds of thousands Of us if not Millions are doing this job alone . See if you can find some companionship with ETHOCare.com I was just given this resource . Find any resources available . Your local elder care , meals on Wheels , etc. if you really feel lonely and have a yard get a dog . they will love you and bring you comfort . All of us caregivers need a giant Virtual Hug .

I can definitely relate to these feelings and share that I take comfort in keeping in mind the our Heavenly Father would'nt expect anything less from me. As a Jehovah'sWitness I can relate...(Ephesians 6:2,3 and 5,6)

First of all no one has to live in or tolerate abuse of any kind. If a person has kids they have to be a caregiver to their kids because they are legally and morally responsible for their kids. That's the only time.
No one has to be a caregiver to anyone else's kids, or for their sick, needy, and elderly relatives. A person's reasons are their own for doing it. Sometimes it's out of love. Sometimes it's out of guilt and some misplaced notions of obligation and duty to the person. Sometimes it's to preserve inheritance so everything an elder had doesn't get handed over to a nursing home or hired homecare.
No caregiver has to be the controlled, measured adult with do- nothing siblings. Sometimes a person has to go off on their family in order to be taken seriously. You need to. If you're not interested in being the caregiver anymore, stop being one. End of story. If your siblings don't like it, they can damn well come and do it themselves. Or arrange for different caregiving services. Quit being a doormat because people will walk all over you.
The caregiver has to be controlled and measured when dealing with the people they care for because the caregiver can never allow a situation to ever get beyond their control. I've been an in-home caregiver for almost 25 years to more people than I can remember. Believe me I did not have a smile on my face every moment. I learned early on not to allow abusive behavior. Dementia or not I don't tolerate it. If a client was too far gone from dementia that I couldn't maintain control in the home and get the work done, I dropped that client from my service. At that point they belong in a care facility because homecare isn't meeting their needs anymore. I don't tolerate 'Senior Brats' acting up for one moment either. My own mother included in that group. Any client of mine who wanted to engage in a bit of verbal or physical abuse (biting, hitting, kicking, spitting, I've had them all) with me, I walk away. They can go hungry, stay in their soiled diaper, and fight with themselves because I will completely ignore them like they're not even there. Clients almost always come around a little while after a tantrum. The same way little kids do. Then the care can get done. Sometimes a caregiver has to give a little bit of it back. I've also done that many times.
You never have to tolerate an abusive situation. Not as a caregiver and not as a human being. You don't deserve abuse and your life, needs, and wants are just as important as anyone else's including who you take care of.

I think that many of us have been in this situation. I know I have. I began setting boundaries (which others do NOT like at all), limiting my time with my siblings and others who judged, accused, blamed, etc. I also had a long talk with my husband about the care my mother required, basically telling him to help or suck it up. When the one sister who was helping me was no longer able to do so, I sold my mother's house and used the funds to hire a caregiver. When my husband got sick, no one in the family reached out to help; when he passed away, no one offered to help with mom while I grieved and planned his funeral; when I got COVID, no one offered to take mom and I had to continue to take care of her from 5 p.m. - 10 a.m. when the caregiver came in. Bottom line is that I forgot about all the others and concentrated on taking care of my mom. When she was mean and nasty, I went into the bathroom to have a good cry. On tough days I put her to bed early just so I could have a few hours to myself. On days I felt really down, I cried in the shower when I got up, and let her sleep in until the caregiver got here. There was a lot of anger, frustration, and exhaustion. I focused my energy on keeping mom's environment steady and hid my feelings from her the best I could, as she was quick to pick up on my emotions which created a whole 'nother situation. She fell in January and is now in a SNF, and I am in counseling--for grief and my anger. It's not right for others to put all this on you, but remember...you can't control others or situations, you can only control the way you respond. You aren't alone. Sending hugs and much love your way.

You know, it should be a bless to have siblings to share the loved one with. It is sad that so many of you are in this untenable position with uncaring to downright nasty siblings. On the other hand, here I am as the sole sibling caregiver for my mom as my brother passed away years ago after a lengthy illness. Sadly, it is actually easier for me as I make decisions on my own, no having to confer with the kind of siblings you describe. My wish for you is to be able to tune out your siblings and "let go" of them as family. Block phone numbers. And totally keep them out of your life. Find a way to do nice things for yourself. Daydream and actively plan for things for when you are no longer the caregiver. Listen to music you like... earbuds, if needed. Pamper yourself... find time, hire someone for an afternoon, turn your phone off, and go do something fun. Take care of you.

We’re not super-humans. We’re only trying to help our LOs who can no longer do for themselves. Use your focus and energy on your LO. Don’t waste your time on siblings who are of no help to you. Their seasons are coming.

This is why the assumption that everyone is cut out to be a caregiver is a bad one. People CHOOSE this as a profession, but most of us have it thrust upon us without us having applied for the job. That's why you have to know your limits and set boundaries.

There's no shame in placing a LO in a nursing facility. There they'll get the care they need, it'll be administered by people who chose the profession and are trained for it, and it frees you up to be the emotional support for your LO.

And yes, you have to be the adult when dealing with someone who has dementia. That's called empathy, compassion, and maturity. If you can't do that, then remove yourself from the situation.

Exhausted One, when the unhelpful family tries to give you grief or BS because you can no longer be the hands on care, tell them you will give them .50 to call someone who cares what they think.

No boots on the ground equates to your opinion doesn't matter and you have no say, except the date and time I can drop her off for you to care for.

You matter! Please, please find a way to change this situation before you become a statistic.

You have gone above and beyond to help give her a better quality of life, well done! Job over.

I think as people are shutting down and reaching the end of their lives, their brains are affected. My mom was an incredible lady who took care of her own mom and husband, but care giving for her turned me into someone I disliked. She was stubborn, crude, and combative...so unlike her true self. Now I care for my husband who has turned into someone I don't even know. Yes, its a terrifically hard job, but I don't think all LO are making it deliberately miserable. Try to remember them as they were, and walk away for a bit when it gets ugly. Someday we will miss them terribly, although that's hard to see right now. Enjoy the moments when they are lucid.

What's an LO? I'm new here...I'm 58 years old, single no kids and I live in Canada. It's easier for a worker to be controlled and and measured in any situation but as family members it's harder to do because the veil is off. There is nothing to hide. We both know each other. The good, the bad and the ugly. There is no surprise when upset is expressed because there's not pretense between relatives. You're just more brutally honest with people you love and vice versa... the timing of having to run urgently to a new need or situation can conflict with your enjoying your evening. Your team is on the powerplay down a goal with 5 minutes in the game and mom (93, who took care of her own mom who lived to the age of 102) can't make it to the toilet and everything hits the floor. You can't wait until the conclusion of the game or the stink will kill you. You must rise to the occasion immediately regardless of oh what fun it is to ride....You must start cleaning while trying to keep her from stepping in it because then you'll have to wash her shoes too. Very stressful. Now you have a total bathroom restoration floors, bowl and all and the pathway to her bedroom. Anybody else been there? Takes an hour to do all that then clean mom ( they can't really wipe themselves) and change her to clean dry underwear and pants. You just curse your sibling under your breath and know they can never understand what you're going through and what's worse, you know and resent that they feel fortunate they don't have to help. Anger with life. Why is he so lucky? My brother's wife would never allow mom to stay with her and give me a break,. I haven't gone out in 8 years since dad passed away and felt I could not in good conscience leave such a frail fall risk to remain alone at any time. Now she was a good mother. She made sacrifices for me and I know it. That helps sometimes with the emotions and the feeling of unfairness. But now she is so needy and dependent, I feel it is my duty as a son she not only brought into this word but truly loved me and wanted me. A loving mom is a terrible thing to lose even if at the end she becomes unbearable (for which she is profoundly sorry for being.) I turn to Jesus for strength. The Son of God did not free himself from the whipping post and unleash all the power of the Universe upon his assassins. He knew the act of dying would fulfill a great purpose under Heaven. He did not lash out nor breathe fire from his mouth like a dragon and incinerate the whole crowd if he wanted to. Jesus was focused on the Extension of life in His Father's Kingdom in Heaven. Not all of us can be like Jesus. We are not Divine. We are imperfect. I look at it this way. You can do all the good deeds you want but to hear somebody bless me like my mom says, ("God bless you for sacrificing for me,) it makes the true meaning of life come to the forefront. That is something money can't buy. Jesus said why praise yourself? Is it not more honourable to be praised by somebody else than yourself? it's easy to toss a coin at a beggar, wish them well then walk away but to care for a helpless mom is the realm of saints and I do not believe meaningless to the blessings of Heavenly reward. Love your parents. Forgive them. This world is not the end. You'll see. (Does LO stand for Loved One?) I think I figured it out....and hopefully I'll figure out the rest of this bumpy journey of love.

I completely relate to what your going through and am currently struggling myself with my 88 yo father. I am completely burned out "helping" him stay at home. I drew the line in moving him into my home. I moved back to assist with my mom's care after she fell at home breaking her arm and pelvis (he was NO help to her). Not the first time I have disrupted my life to help them. My sister has always been distant, is not a caregiver type at all and never helped during a health crisis. I am a retired nurse now and when mom passed, dad's health was already declining. No longer driving for over 2 yrs, I have been the source to go shopping with him and getting out. He doesn't cook at all, microwaves everything if that. I live over 30 one way, miles away with my husband and my sister lives 2 miles from dad. Helping him wasn't too demanding of my time until over a year ago. He has had several hospitalizations (colon mass and a mild hip fx) and his stability and mobility has gotten terrible. His hands are very arthritic and he drops things constantly creating alot of messes in the home. I finally got a housecleaning crew for him, as I was the one doing it for 3 yrs. I could not keep up my own home and his. He truly needs LTC. He has home health coming in 2 times a week, but will tell them not to come off and on. The main issue I have with this man is he makes up things to tell my sister and then he attempts to tell me something different. This has been going on all my life, he pits her against me. He also makes up things about his female cna who he is having fantasies about. If I believed any of the things he says I'd contact HH and report it, but he has a long long history of this. He has some sort of undiagnosed social mental disorder for sure. I have stopped him more times than I can count when he begins to "trash talk" to me and he gets sexual about it. When I have told him to stop it, he says "well I have no one else to talk to". I tell him that does not matter as he is totally disrespecting me! Does he stop? only for a few days! Then he'll do it again. When he broke his hip, being tossed off his riding mower, he was in the hospital over a week and in skilled rehab for 4 wks. He is reckless trying to remain at home. He became like an animal when my sister and I attempted to discuss him going into LTC due to his weakness, being home alone, no one to cook for him etc. To say he was furious is nothing. That was last Dec 2021. Over the past months now he is more demanding than ever. He calls to say he hasn't eaten in 2 days (guilt inducing) and I tell him to get a frozen meal out and heat it. He hates to even do this. He is lonely he says and needs company, which means he wants someone to listen to him go on and on and on (and trash talk). I've reached my limit this week. I feel used and abused. He's my father and I do love him, but he has been mentally abusive to me as long as I can remember. I am tired of living in the road to assist him. I feel your pain EO, as it is very difficult to go down this road. Only "we" know when enough is enough. I'd never do this to my children and have told each of them that when the time comes, to do what is needed if I do not have enough sense to do it myself. My dad will never willingly agree to LTC, but that is barely functioning at home. The more we do for them to remain at home the bigger the burden becomes. I have almost lost myself during these past 4 yrs. I am burnt out.

We do it because we care . No matter how challenging the situation. Once you take on the role of care giver it is no longer about you, just get over yourself

Ive been alone with my LO for 6 years of alzheimers I have no outside help. I know the horrors of Alzheimers I don't get burned out , I can't afford to think of myself even though I've been diagnosed with an incurable and eventually fatal disease my duty is to face every days new challenges with her. So I'm sorry I can't empathize with people who can't live up to their obligations and think only of themselves. I get frustrated I want to pull my hair out at times but then I think what if that was me losing my mind My LO would do the same for me.

You have the right to feel angry, resentful and downright pi$$ed off! The task you are doing is monumental, and I would add, impossible for one person. What other job is 24/7? Allow yourself to feel these emotions, scream into a pillow, stomp your feet. I facetime my therapist EVERY week just to keep my sanity. Good luck to you.

Ohhh booy.....this is going to generate a lot of replies.
For instance-I learned today (listened in to his phone call in another room-while doing paper work for his medicade), that my husband's daughter left him alone all weekend. I thought she would be here, I'd get some respite time. If either of them had called me, I would have come right back-only went two and a half hours away. Oh, it gets better-she's studying to be a.....nurse.
He has early dementia, has has some dizzy spells that can include falls, has wandered in the past (at least the local cops know about it now) on a lot of medications, lots of other health issues. His daughter is aware of the dementia diagnosis-don't think she knows all the other issues.
I am really, really upset about this. Yet, the sites that say I have to be angelic, kind and perfect with stuff like this, obviously never had a day like this one.
My husband is suggesting that his daughter comes to visit for another weekend, (thinking I don't know what happened), as well as his telling her he'll be ok if she does not stay the entire time. OMG.
Just had to vent....this is nuts.....thanks for any and all feed back.....

I don't know. I'm still trying to figure this out myself. Sad part is that I'm in healthcare as a Home Health Aide. These elderly people are from a different era. I usually gauge what year they were born and then I go and read up on history what was going on at that particular year. Most of the clients I've gotten were horrible. They were demanding, disrespectful, and kept ongoing tension going on. It got so bad with one client that I quit the case. I haven't worked in four months. I know that time is getting closer to going back to work, but after dealing with that client, I've had blood pressure issues. I fell down the steps and had balance issues that have improved, and I went into a depression. Finally, I started self-care again and got treatment for the things that were bothering me. I had heart meds that were actually making my condition worse because I have asthma. I got the meds switched. So, I'm getting more oxygen, and my pulse is at a normal range again. One day I actually felt like my heart was going to stop taking these other meds. Now, these meds were a rush job from the cardiologist so that I could get a job. I didn't get the job, and the medication could have caused my demise.

Every job description I read says the exact same thing you've written about. I don't feel that way. Caretaking is h#ll. Many caregivers have died because of the stress of taking care of another individual. I had siblings that didn't help out and were actually mad because I stayed in the house to take care of my sick sister. This older sibling kept calling Adult Protective Services making up false reports. I paid all of the bills, bought the groceries, housework, and laundry. However, according to them, I wasn't doing enough.

ExhaustedOne: Perhaps it serves zero purpose to be involved in argumentation. Although it may sound trite, be the bigger person that you already are.

Seems to me, that the vast majority of caregivers here are women.

I look at the OP’s letter, and I’m thinking that if we substitute any other traditionally “Women’s jobs”, such as teacher or nurse, all of the expectations hold true.

Yes, I know that there are some men on any faculty. Retired teacher here. 👩‍🏫
There are male nurses. Experienced hospital patient, too. 🤨

Women are expected to put up with things that men would NEVER be expected to, if men were the majority in a profession.

Treated like garbage? “Well, you signed up for this!” Would the same thing EVER be said to a man? I think not.

Exhausted, I did 24 hour care of my mother for only 6 weeks. I became bedridden from the stress.

Do WHATEVER you can to save yourself.

I am cheering you on from here.

I think this is somewhat an extrapolation from the advice given to caregivers for dementia patients. It doesn't do any good to get angry with and upset the person with dementia; they can't help their behavior.

Now for an elder who doesn't have dementia and treats their caregiver poorly, I have a lot less patience. And siblings who don't help and/or criticize deserve no quarter.

I happen to believe that no ONE person should ever be responsible for caring for an elder who needs 24/7 care. It's simply more than one person can handle and that is what causes the burnout and frustration. If there aren't additional family members or paid caregivers sharing the load (on a daily basis not just respite care), they should be receiving care in a professional setting (i.e. nursing home). It's beyond selfish to insist one is "never going to a nursing home" because sometimes there is no other option.

I understand where you are coming from… any websites you access state how to talk to someone with dementia, how to accept their behaviors and basically handle all the difficulties associated with the disease. Rarely do they mention how difficult this can be at times. Not all dementia patients are docile, agreeable or receptive to their needed care and they can be extremely difficult to deal with. There is very little support for caregivers that help them to deal with these situations.

one of the most important things to remember that a caregiver needs to do is to take care of themselves. If that doesn't happen than ultimately the frustration catches up to you. Having said that , it is true that a lot does fall on the caregiver. That person needs to sit down with other involved person[s] and work out a plan for who will do what for the one being cared for. Those who are unwilling to help can not and should not be catered to or enabled to ruin what is going on. One possibility is to make sure the necessary paperwork is prepared -POA [finance and health] designating who has authority to do what One good tool is for the caregiver to perhaps get counseling themselves right up front so they can be prepared [easier to say than do] for what will happen and what they have to do. It is not and should not be required for the caregiver to not have feelings and ignore what others may do. Sine each situation has its own variables, it is difficult to specify here every potential issue and solution. Those who don't help have to live with the consequences [some won't care] but you can only control what you do, not what others can and sometimes you need to remind yourself of that.