We are expected to be civil and thoughtful and understanding when dealing with selfish siblings who don't help and show no gratitude for what we're doing. We have to be on an even keel for the LOs we do care for regardless of what abuse they heap on us or how many tantrums they throw or how they may disrespect us and our time and/or lives. All while we're literally and euphemistically wiping their a**.
Where did this idea come from? WHY should caregivers be some kind of superhuman creatures who take hour after hour, day after day and year after year of s*** thrown at us. And we're supposed to do it without being resentful and with a smile on our face so as to not upset the LO we care for.
Go find any article on caregiving, lack of sibling involvement, how to deal with a difficult LO...they all say the same thing. The caregiver has to be the controlled, measured adult in every situation.
What. The. Hell??????? Where did this idiotic notion come from and does anyone realize how horrible this makes a caregiver feel when they are robbed of their humanity in this way?
We can want in one hand and spit in the other to see which fills up the fastest in regard to siblings helping. I've always gauged what I do by - how well can I live with this decision. My gauge and someone else's are totally different - with parent and with kids. Some folks can pack a kid's bag at 18 and tell them to get on with adult living - I couldn't do it. Same for my parent - set my goal as to keeping parent in their own home as long as I could do it physically. Not all siblings think the same way as I did. It was equally important for me to keep my relationship with siblings intact. Wasn't always easy or without frustration, but worked through it.
I suggest to forget the sibling issue - you can't make them what they aren't - and focus on what you can live with. Follow your heart. Follow your physical ability as well. If you can no longer lift someone or physically help them, you did your best.
I didn't want my last words with parent to be argument, so I just cussed things out to myself in another room when I needed to vent. At the very least to get a break, ask siblings to help you arrange a SPECIFIC date(s) to take a leave. You might get more out of them like that - even if they all have to chip in to hire help. If parent has money - by all means USE IT while parent is alive and needs assistance. Don't hang on to the thought of an inheritance for yourself or the others. It was saved for a reason - old age.
Hope you are able to find ways to relieve your stress and do as 'Management' said - it's taken care of! Love that response myself!
If your LO is being difficult, bring it to their attention. When my LO tells me something needs to be done, I ask her to take care of it. Usually she will but sometimes she argues. As caregiver, my schedule is like clock work and sometimes I think she feels like she can't help or I don't want her help. By asking her to help, it makes her feel needed. Perhaps it may help your LO as well.
Another thing that may help you is to hire someone to come sit with your mom to give you a break. Since I work full-time and my LO cannot be left entirely on her own, I have a young lady come in 4 days a week to spend time with her, make sure she eats something, takes her outside for walks, gets her to dancing to oldies music, does puzzles with her, etc. It has helped me tons to have outside help since I don't feel as stressed now.
You should consider joining the Alzheimer's Dementia Caregiver's FB Support Group. It is a place where you can find support and vent without judgment.
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share
Don't let too much of life go by without enjoying it, is the best message anyone can give a caregiver. Thanks for posting it.
I have similar thoughts. I’m the one keeping the peace. I just figure that if I add to the tension, it makes it worse for myself during that moment.
“Why do the caregivers have to do all the understanding!“ ! This has been my complaint for quite awhile, but am coming to grips with it. I wanted to share a thought or two.
I am often up in the middle of the night just to have a few quiet moments to myself. This is when I work at assessing my own condition. Lately I have begun to think of myself as ‘Management”! For 40 years my LO and I ran two businesses. We ran one together, with him in charge, and I ran the other one by myself. In the “by-myself business” I learned, I made mistakes, I was a success….. most of the time. Since I did it then, I can do it now. I am now in charge of finances, household, auto, maintenance of all appliances, equipment, food prep ,clean-up, laundry facilities, etc. You get the idea as you are all doing it also. It makes me grin when I think to myself, Management said I could leave the dishes overnight if I want to….so I do! Management said I could I could charge this on the credit card, no consultations required for this CEO! Sometimes Management has to take a break and can do so ….again, without consultations. Management can decide to do almost anything without consultations…if for instance, children, perhaps siblings in some cases, try to second guess me, I inform them that Management has it covered!
The other idea I have had for some time might be appropriate to mention today. There was only one perfect human on this earth. Whether or not you are a believer is up to you. I remind myself that that particular human had his moments! He yelled in the temple and threw over tables, scattering coin and other humans before his rage! He remonstrated with Martha and Mary over doing/leaving the dishes and/or listening to his “podcast”! He whipped up enough bread and wine to cover the crowd he didn’t invite! He was angry with his best friends because they could not guard over him for a few hours, going to sleep when he was expecting them to help. He even asked his Dad to let him out of the tough assignment, he didn’t want to do it anymore than we want to do what we’re doing. He was, for his time, a HUMAN on earth, just like us. He lost his temper, probably said things he might have regretted later. He was afraid, he was strong, brave, and did the best he could in the end.
We can do as much as we can do, be as brave as we can be, lose our tempers, and say things we regret. We are just human, our LO’s are just human and if they could, most would not do what they do now. There are always unhappy exceptions to this and one has to do what they have to with that also. No recriminations, just do what we can do and let the chips fall where they may.
Best to you all, Easter Sunday 2022
People need to understand that caregiving is extremely difficult in the best of situations. No one should take it on, then blame the other siblings who were smart enough not to. If no one sibling gets guilted into doing it, then that will create a situation when ALL siblings will decide together what needs to be done. It's unfair to expect people to take on an impossible task. This has nothing to do with being disrespectful, but rather how our society is set up. Everyone works. Those who don't are in that position because they carefully worked and planned so as to have free time, not to become a nursemaid.
The bottom line is that people have to take responsibility for their choices and stop blaming others.
Like you, I believe in personal responsibility wholeheartedly. But many caregivers end up in a situation which was misrepresented at the beginning. My caregiving journey with one of the people I post about was supposed to be short-term. Temporary. It wasn't. And once I got involved with it, I then had to extract myself from it when I realized I could not provide the 24/7 hands-on care that the lady needed.
I took responsibility for the caregiving I agreed to. I provided additional care above and beyond what I agreed to (because I didn't have an escape clause that others found acceptable and there was no safety plan for the elder I was helping). I took responsibility for finding the lady facility placement so she could get the 24/7 care she truly needed. I think that's a lot better than your suggestion that I agreed to help someone, got sick of it, and then blamed the person. Couldn't be further from the truth.
One of my pet peeves is often reading on this thread about the one child who is the caregiving slave for Mama (usually it's for Mama, as women live longer). This child won't abandon Mama because she was "such a good mother." I often think, "Really? How did she raise such selfish children and one scapegoat?"
Of course sometimes it's the caregiver who refused to allow Mama to go into a facility when the other sibs wanted that, so is a martyr to Mama's care at the expense of their own wellbeing.
When my mother was making my life so emotionally difficult, I realized that I could have gone to therapy, but then thought, "Why should *I* have to pay for something because of her?" And so I didn't. I would have balked at taking her to someone to talk to, also, because, again, that would be hours of MY time.
I'm sure many thought I was being selfish because I basically demanded compensation for the hours spent doing things for my mother. My one SIL huffed that SHE would never charge to take care of HER mother. Her H (my brother) quickly snapped at her, "Well, our mother isn't like YOUR mother!"
The 3 brothers were all afraid that our mother would become the responsibility of one of THEM, and were more than happy to have me be the one to deal with the day-to-day issues with my mother.
And of course it would had been a different story if my mother hadn't treated me as she did -- telling me I was a bad person and that my time was worthless. Her true feelings about me were definitely shown because she lost her filter. And she thought I was stupid, too, and would never take my advice about anything.
There is so much abuse of caregivers!
My mother is exactly like yours. I too was the family scapegoat since early childhood and my mother never had an ounce of respect for me. I'm her caregiver because we have a mutually beneficial arrangement. I would never consider doing it for free and if dementia shows up, she's going into a facility and she knows it. I will not be her caregiver then.
You have every right to be compensated for your services and I'm glad to hear that you were.
If I, as a caregiver, lose my temper or get frustrated over something... it's because I obviously don't care ENOUGH and I am advised to calm down and think of someone other than myself.
Well, generally speaking, giving my all to others is pretty much why I'm frustrated and upset. It's tough to be cheerful when boundaries are not respected and I'm mandated to be cheerful (if not downright grateful) while simultaneously cooking a meal, taking out the trash, answering the phone, dealing the nosy neighbors (aka spectators) at the door, and knowing full well that I have taken my eyes off elder for longer than about 2.5 minutes and heaven knows what she's doing (probably soiling herself and the carpeting - which will be mine to clean up).
And then a family member shows up and asks me why there is dust on the light fixture. It's hard to handle that with a smile.
You don't have to handle it with a smile. I never do. Some of my family has had something to say because my mother is a master manipulator who knows how to get others to feel sorry for her. She'll talk about me to my family and what a terrible person I am. At this point most people know it's nonsense and she doesn't get the attention from her audience that she once did for these performances.
I've had families of care clients who would come in and inspect the house with the white glove then get on me about it not being clean enough. I never handled that with a smile either.
I'm respectful and friendly enough to a client's family. When I meet new clients and their families, they've already checked my references which speak for themselves. I won't jump up someone's a** with the phony smiles and sweetness because that's not who I am.
I've had clients and their friends or family come in and inspect a house with the white glove then get on me if the place isn't immaculate. That happens often. I explain plainly that I'm not a cleaning lady. I won't leave a mess but I'm there for the client not the housekeeping. Of course I always offer the option of adding this service to a client for an additional fee. Families are usually shocked at first but when they shop around they find that hiring a housekeeper three and four days a week is way more expensive.
I couldn't care less what non-caregivers think of my service. They can kiss it if you get my meaning and I make that very well known.
For me the lack of sibling support got even worse from there. When my parents died, I was alone planning the funerals. I was so exhausted and strung out from caretaking, there was not a bone in my body that could get myself easily out of bed. My siblings came as “guests” to the funerals then complained about my choices.
I turned out to be executor that turned out to be later sued by a couple siblings (that I had been formerly extremely close with) that my parents had excluded from their estate. If you would have told me it was going to play out that way, I would have never believed you. At the time, I felt like I would surely implode.
So I lost dignity and my life and parents and siblings and felt pretty rotten. I felt like my life was empty, gone… pointless.
Why am I writing this? Now some time has passed and I have no regrets. Not one. I look back with gratitude for the opportunity. I am not close to all my former immediate relatives, but I’m close to the good ones. The ones worth having in my life.
I know - and will always know I did the right thing. Caretaking for my parents is my proudest accomplishment—even though it was unpaid, 24/7, and very far from glamorous. (No other paid job I have ever held compares to the self respect that I have earned (paid myself) in the long run). I am grateful that I did everything I did, even though it was hard sometimes and seemed meaningless and unappreciated (by many) at the time.
Keep it up. Time and life will reward you. You will be happier than the others.
ACaringDaughter:
“Time and life will reward you. You will be happier than the others.”
I believe in that, too.
Although the non-helpers look happy - there will be karma.
Nature is very orderly. The universe, too. And life, too, I think - even though it may not look like it. If it were too obvious that bad behavior indeed leads to “punishment”, no one would behave badly - but not because they suddenly become caring individuals, but because through calculations (knowing life will “punish” you), it’s in your best interest to “behave well”.
So, for the future: I believe in karma.
For the past: I have no regret.
BUT FOR THE PRESENT:
I myself need to make a change. I can’t continue helping hours and hours. It’s self-destruction. I’ll make a change.
Enjoy Easter! Enjoy life! :) Enjoy being healthy! :)
Because how you behave is about what you are like, and not about what you are like depending on what other people are like.
If you are not someone who is able to be understanding, civil and even-tempered including - or rather especially - in stressful, emotionally-charged situations, then perhaps caregiving is not for you.
That does not mean you have to tolerate abuse - in fact, in common with many public-facing services we have a zero tolerance policy regarding abuse, and as lone workers we are encouraged to seek back-up and report any incidents immediately. But this is about ensuring fair treatment and respect, it's not about winning arguments or restricting clients' freedom of expression.
Family members should be free to complain if they're dissatisfied with any aspect of our service, but they must do so without being abusive. The moment they raise their voice, use inappropriate language, or cause a member of staff to feel threatened or bullied - that's the end of the conversation. In one case recently, and I have to say I laughed out loud, the client's son opened the door to me looking crestfallen and said "your manager just hung up on me!" "Oh dear, did she?" I replied. "What on earth made her do that?" He sheepishly admitted that he may have become a bit heated and, er, .... [All was well, by the way. The client had her head in her hands and was embarrassed, but no other harm done.]
Clients themselves, obviously, need more slack cut for them. They may be ill, in pain, mentally fragile, frustrated, depressed, angry. It is unreasonable to hold them to the same standards of courtesy and consideration that apply generally. If they are lacking in courtesy (please, thank you), overlook it. If they are actively rude, overlook it at least until the time is right to question it. For example: supposing they swear at you during a washing or dressing routine - that's likely to be because it's painful to move their arm, or they're in a hurry to get it over with because they're getting tired. So get it done, make them comfortable, and then the chances are they will apologize without your prompting them; and if they don't it is fine to remind them gently that "as a team, we don't expect our clients to use bad language or shout at us." If they grab, hit, pinch, bite, throw things - step away, make sure the client is safe, contact your Shift Leader immediately. [The Shift Leader will a) advise you what to do; b) speak to the client or the client's family; c) send a second worker; taking it from there as necessary.]
Of *course* it is different for family caregivers. There is no training, you're never off-duty, you're carrying all the baggage of your family's individual history, it's a tinder box. I wish I'd had training *before* my caregiving years with mother, instead of now, too late, after her death, with all my regrets.
But remember. The reason it's not a good idea to tell your seagull sister to go and eff herself is not that you want a halo to polish, but that your mother wants to see her - has a legal right to, what's more - and it'll be more bearable if you're vaguely on speaking terms. What's the alternative?
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 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.
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.
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.....
perhaps next time you want to get away, put him in respite care facility or a paid caregiver..Hugs 🤗
Most likely you’re not being psychologically tortured every day by your elderly family member.
Please find yourself again. HUG.
And Happy Easter!
LO = Loved one
LOs = Loved ones
Vito, you are a son. And elderly mothers often treat their sons quite well: praising, grateful, sweet.
That’s not the case for many elderly mothers towards their daughters.
I’m always surprised at men who don’t realize mothers often treat sons and daughters very differently/unfairly.
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.