Should you be compensated for being a caregiver is your mom has the funds and your making less money because of caregiving
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So many assumptions in this meant-to-be-helpful article. Come on...call in a mediator? Who even has the time or money for that? And what about those who have no siblings? But the comment about expressing appreciation...that's something that takes little effort by those who are at a distance. I never was the type that needed any pats on the back for doing a good job at work or elsewhere...but maybe caregiving is the hardest task of all...so when my sister actually, for the first time ever, thanked me for what I was doing, it was much appreciated. So also was the comment made to my mother with dementia by the doctor that I loved her very much. She said in her sarcastic/snarky way "I hope so." And he responded "I know so." I read something over the weekend that appeared in a magazine...not sure which one, but it was discussing if I'm remembering the term right "emotional labor"...and boy was it right on for all that we do. It's the exhaustion from thinking, coordinating, remembering, planning when it would be nice if others did the same. An example was leaving something in the middle of the floor, or having to put something up on a top shelf. And while someone else saw the person struggling and said all they had to do was ask...that was the point: that the person shouldn't have to, or didn't have the energy to ask. The other person just should have seen it and done it.
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Generic information that fails to address the ongoing, daily drudgery and unplanned crises. You can't outsource the management of a loved one's care. You can parcel out a few things, but ultimately it comes down to one person. In this case, me. I'm constantly on edge waiting for the next shoe to drop above and beyond the usual pharmacy runs, phone calls, hair cuts, doctor visits, hospital tests, schedule coordinating, bill paying, grocery shopping, home repairs, gardening, snow shoveling, clothes shopping and returns. My sibling, who lives in another state, suffers from a lot of guilt at being so far away, is an expert at trying to foist the guilt onto me. I don't do enough. I don't visit enough. I'm selfish. Blah Blah. Blah. After sibling's bi-annual visit she posts happy times on Facebook with mom and all the activities she did for mom like she's daughter of the year, with hundreds of likes and encouraging remarks. Caregiving is not a once and done, go home and resume your life. It's putting your own life on hold for an undetermined amount of time. I'm a senior myself, manage my own household and work full time. This is nothing I signed up for and I know the anger and resentment is unhealthy. Therapy helps me cope.
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My sister lives in another state so I never expect her to help out, yet she is generous with her criticism claiming I could and should do more to take care of our dad while he is still with us. I am already stressed out as it is with the current caregiving circumstances and he isn't even living with us. My sister and I used to have a great relationship before our dad began aging less gracefully and depending on us. I suppose this is the true testament to the strength of our sibling bond.
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These are great tips and 'textbook' ideas. However the reality of making it work is minimal unless you have a unique and committed family. As a counselor, I hear it all the time. In our case we have a sibling close by who 'resents' being asked to do something, even if they sign up for it. In our situation it had to be on the siblings schedule which is not always consistent with the parents need or urgent matters. One has to understand that when safety is involved one has to 'drop and go' which falls back to the unsuspecting primary to manage. That siblings issues are projected onto others and blaming starts. Blame for what? doing 'too much'. The long distance sibling (an RN) comes to visit, but respite care is basically a visit and not the 'doing' that is needed. Meanwhile, the primary caregiver who is taking the responsibility to 'get it done' just doesn't say anything because it's not worth listening to the excuses. Why is the perception that the primary caregiver has a 'flexible schedule' and why is there a misperception of the primary caregiver having no other important obligations, a justification for lack of responsibility of the others. I recently talked with another professional, who was in the same boat but said his sister was doing all the work. I told him to be sure that he at least called her to thank her, often. Honestly if you think you can't do it because you believe you are the only 'busy' person in your family, or you simply don't want to, just own it, and say thank you to the person that is doing the majority of the work.
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Great article. However in the end if you become the main caregiver expect nothing from siblings so you will not be disappointed.
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Well, my sister is dead and would not have done anything if she was alive. My brother doesn't even speak to me even when asked nicely. He won't even come see her now that his "allowance" has been stopped. Mom will be 90 next month and no one has the time to come see her though I have offered to help with car gas or motel. Sad.
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I came here from CA and gave up my life there to take care of my mother so she could stay in her house, which is what she always professed she wanted...never expecting I would still be here almost 9 years later and her being 104!

Never had a vacation or even a weekend off...24/7 while still trying to keep my business going at home, here in the house I grew up in.

All my siblings are retired, 2 live out of the area, 1 brother is a bit more than an hour away, and he will come down occasionally to sit with my mother so I can go to a church function or other events and will also come for visits with his wife...but really no assistance to speak of. My sister comes around a couple days at a time when she is on her way somewhere and my other brother's visits are years apart, and only when he and his wife have something else going on here, spending only a few hours visiting with my mother.

When I came, my mother had a slight case of dementia and could no longer drive at age 95. It seemed like a fair deal, as I was getting my expenses all taken care of...room and board, utilities, etc. But, the dementia has progressed and she needs constant supervision. I haven't had a chance to have a social life and I my mother and I don't really have much conversation. She doesn't like being told what to do, but I don't have much choice. I feel like the world's worst nag and this is eroding my self-image and depleting my joy.

Lately, because I went to an attorney to talk about future plans, the family has discussed what will happen in the future. My sister has POA for the Trust and has told me that when my mother passes or has to go permanently into a home that I can't stay on here in this home, which is part of the trust. She also said that "if there is money left when my mother goes, they would like to compensate me"...which makes me feel like whatever I have done isn't worth anything if the money is gone. So I feel like I can't afford to spend any money now on respite care for fear that the house will be sold to pay her expenses and I will end up with nothing, after giving up everything when I moved here. And the trust is set up to be split equally between the four children. This was decided almost 20 years ago, before I became the sole caregiver for my mother.

So, thanks everybody for letting me tell my story. But I'm not really expecting advice, as there really isn't anything I can do but keep doing what I have been doing.
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Hello Sisters! Our story is a common one. Siblings don't help and the only thing they provide is criticism. After 8 years I am still shocked and I keep hoping (foolishly) that one day they will care. They don't want to be inconvenienced or even hear from the caregiver because you are a constant reminder of a loved one they would rather forget. Illness is unpleasant, uncomfortable, messy and time consuming. All things They don't want to deal with. They blame the caregiver so they can absolve themselves from all responsibilities. Reading this article made me laugh out loud remembering the time a social worker arranged a family meeting and of course no one showed up but me. I would like to thank all of you from the bottom of my heart for all of your words of comfort and understanding. You are my true support, my true family. Thanks for showing up. All my love to you!!
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Hello Sisters! Our story is a common one. Siblings don't help and the only thing they provide is criticism. After 8 years I am still shocked and I keep hoping (foolishly) that one day they will care. They don't want to be inconvenienced or even hear from the caregiver because you are a constant reminder of a loved one they would rather forget. Illness is unpleasant, uncomfortable, messy and time consuming. All things They don't want to deal with. They blame the caregiver so they can absolve themselves from all responsibilities. Reading this article made me laugh out loud remembering the time a social worker arranged a family meeting and of course no one showed up but me. I would like to thank all of you from the bottom of my heart for all of your words of comfort and understanding. You are my true support, my true family. Thanks for showing up. All my love to you!!
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None of this helps when you have a sibling like mine that lives just 10 minutes away but is not allowed (by his wife) to visit for more than a few hours a month, and then doesn't want to do any work or help. I begged my brother for years to trim my father's nails, get him a hair cut, make him see a doctor, make him get out of his chair, make him change his clothes. Nothing, not once. I finally had to hire help.
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I have three other siblings in northern Michigan. Spent three years suing my mother for control of her & my fathers property. Once the settlement agreement was signed by my mother the other three creatures never contacted her again. My mother,93 is now living with myself and my family and with my wife and daughters help we care for her till the end.
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I'm basically in the same the siblings said there to busy or it up sets me to see mom in this condition. She has severe dementia and clinically blind I got tired of listening to the excuses and told them when she goes you can read about in the paper they still don't call.
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RaggedlyAnne... I waited a long time for a sister like you... Thank you sis! I am the only girl with an older brother and younger brother... both stay far away from helping my mother (they live 1000 mikes away in different directions)... At Christmas the oldest and his family called my mother, did the usual passing the phone around for 5 mins of fame to make their grandmother and themselves 'feel' like they 'did' their obligation and hung up (didn't want to talk with me)... I should be used to it by now, but it has really affected my joy in life (let alone holidays... that I worked so hard to make bright for my mother)... Like you, I feel like an only child... You are Blessed that your parents recognize what you do for them and that you have your family... (my mother gets depressed and brushes me and all the 14 years I have helped her... here in my house... so, it depresses me to say the least).
God Bless you this new year for renewal!
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After reading your stories I am adopting all of you as my new siblings! My Father said it best to me - "Why ask your prima donna, self-absorbed oldest sister for help? It's useless - she won't help! I have been caregiving for my medically issued parents for several months now. I have three sisters - two are out-of-state and my oldest is local like me. "Big Sis" actually told my Father that she cannot help in anyway because she is to busy decorating her new mansion that she purchased in an insurance scam! I believe it must be humiliating for them that with four daughters only one comes to the rescue. Before caring for my Mom and Dad I worked full-time at my job but now, my hours are far less and the finances are taking a "hit". My husband, who has a heart of gold and loves my parents has been helping me care for Mom and Dad. My out-of-state sisters act afraid of "Big Sis" and are useless to me now. Instead of focusing on my resentment at my oldest sister - I'm trying to pretend I'm the only child caring my parents. A life-changer for me was the first time I had to give my Mother a bath - seeing her naked and helpless in the water made me realize my role as daughter #3 had just changed forever. My Mom reached out for me not "big sis". In fact, I think, that day, I became the real "Big Sis" of the family. So, I'm adopting all of you unselfish siblings as my own and I'm letting my sisters go. I love you all.
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This article is very helpful. I didn't realize that all these different family dynamics and childhood history would play such a huge role in the caregiving of our mother. It is very sad. I don't now where to start.
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Krunk4k... Yes... That's how it usually starts out (you, with the best intentions/unconditional love and the siblings/families becoming more distant). I'm assuming you are pretty young?...
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I'm the youngest of five that never married mostly because my father passed away early and mom latched on the last one at home. I love taking care of my mom and three of the five of us live on each coast. The wife of my brother has always disrespected my mom and my brother always offers her up as help. I alone take off of work, with FMLA, I take care of mom and love doing it, but I guess I wish I had someone else that cares. My best friend doesn't even treat mom with respect like I believe she should. I guess, as my brother said when my dad passed away, I chose to be there, deal with it. I'm thinking that now includes my moms care. I feel like I should give them all a cold shoulder when my best buddy, mom, passes on and I know that isn't right either.
I think I'm feeling sorry for poor little me, as my siblings would also say, no doubt. I don't see a good conclusion to her story or mine.
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How does one go about obtaining a family mediator?
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I just can''t fathom ASKING to get paid!... If this doesn't speak for the person(s), I don't know what does... pathetic.
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the sad story here is that if siblings are presently not visiting their loved one; there is no way in this world you can get them to visit.; unless you offer money. it's a sad sad story when one sibling takes care of everything and the other siblings want to be paid. I have been going through this for 11 years now and nothing helps. thank you for your time
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Care1975... I find your brother and families behavior appalling (which speaks for itself). I'm finding out also (with my family), that you have to accept the fact that you can't change who they are and be glad you're not like them... so disgusting and sad. Try to take care of yourself... You're a really nice person and, at this point, who cares what they think.
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I took advice like this when I was caregiving and was very dissappointed at the results. None of my siblings would help and some even got mad at me for asking them to help. I was the one who lived closest and I feel that I was the one least capable to do the job. That is why I don't find advice, that portrays the caregiver as a person who is controlling everything and who thinks that they are the only ones who can do the job correctly, helpful. That is not true in many cases. Many of us ask for help from the very beginning and still end up bearing most of the caregiving duties. Caregivers need support and validation, that is why we come to this forum.
I saw a comment where the out of town siblings want to be paid to come. You are not alone My brother and his family wanted to be reimbursed for coming to visit at Thanksgiving, my father agreed to pay for the kids airfare, but not the others. They took it out on me because I wrote the checks for him and stopped speaking to me. I only wrote checks that he told me to write, so I had nothing to do with his decision. They also demanded to be reimbursed for everything they spent when they came to the funeral. They make more money than anyone in our family. It hurts me to this day that they don't speak to me, but I have to move on.
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Caperguy- Very sad, isn't it?!! Where has the human mentality gone?... yep... it's gone... I guess when the day comes and they're in a facility, 'they' will find out that no one gives a crap about them... so sad...
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paid? paid? fare to come and visit your kin. wow. I have the same problem. I have no family who will help be a caregive with me. however one of my daughtrer's first cousins told me that he would 'sit' with Lindsay if I paid him. that's my family. I have learned an awful lot about people since I got into this predicament.bad things. I thought people 'thought' basically the same . boy was I wrong
thanks
Richard
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Same here barbeszoo...
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This advice is good, but only if you have siblings who are willing to put themselves in the mix....Ive been taking care of my mother for ten years.....I can count on one hand the times someone has stayed over night so I could go somewhere anywhere. Jealousy and ego has become the norm rather than the exception. I have become distant at best and bitter at worst....
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"Why did you put yourself in this position?"
Well, I was raised by my parents with the Ten Commandments, one of which states "Honor thy mother & father that your days may be long" which is the only Commandment with a promise.
However as it turns out in our family, I must have been the only one paying attention.
The other reason I'm THE CAREGIVER is because I live about 2 minutes away (depending on traffic lights).
I stepped up to the plate because it was logical.
Now, if only my siblings would see that it is only LOGICAL and MORAL that instead of them being paid to come for a "visit", they should put that money towards the person who really makes a DIFFERENCE in my parents lives, and yes that would be me, and I'm not being selfish.
If it "costs" them something to get on a plane (for free) take a taxi from airport (for free) and settle into their hotel room (for free) and eat at restaurants (for free) simply because Mom & Pop PAID THEIR WAY.....
then I would like to interrupt their asinine assumptions to point out,
It COSTS me something to put GAS in my car, to drive Mom& Pops to their doctor, to the grocery store, to their church, to their concerts, to anywhere!
WHERE IS IT WRITTEN that the out of town kids are HOLIER than the one who CLEANS THEIR MICROWAVE and SCRUBS THE TOILET?????

I am so sick of being The One. ESPECIALLY when the mighty out of town siblings get to WALTZ in here, when it is CONVENIENT for THEM, and BE PAID to do so!!
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Epiphany there is nothing to feel guilty about putting Mom in for respite care. Your husband needs your help too.
You have already gone ahead and found some rescources so go ahead and make use ot them.
It is a lonely road for your husband to travel alone to all his appointments. It is always good to have a second pair of ears in the room and be able to talk out decisions. I am sure he is used to the medical world by now but even so it may bring back difficult memories so he really does need you there. mom may not like it but it is only for four days so she won't come to any harm with you away. if someone could volunteer to stay with her at home that would be ideal but it seems they are not willing to do that so do what you need. Blessings
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Thanks for responding I did the POA procedures for financial management as well as health proxy before I took her from her previous state of residency. I have tapped into a number resources but have use only a few of them through the state Medicaid waiver program, such as Alz day program and medical supplies. I had some home care services for a short while, they came in washed her and sat down so they were fired. I am contemplating letting here go to a facility for about four days while I go with my spouse to his VA appts. You see he is a paraplegic and is able to walk some but will need to travel to another neighboring state for spinal cord injury. Somehow I feel guilty doing this.
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