How do I describe to non-caregiving family members what it's like to give up my life for my parent's care?

Honestly I don't really know because when it came to my mother (before she passed) I had help from my Grandmother then my siblings stepped in to help. Now as for my Grandmother I'm not really getting any help with her so basically I'm in the same boat as you are. Probably the best thing you could do is continue taking good care of her or just walk away and let them figure it out on their own. I'm about ready to do that with my Grandma for awhile just to get her family to step up. Sorry I wished I could help more.

i think other family members fully understand your sacrifices theyre just happy your doing it instead of themselves. furthermore since youre getting all the " credit " they figure you can do all the work. i would ask for their help as often as possible just to add to their guilt. yes we can cause people emotional grief too if thats the game they want to play. ( lol amateurs )

This was a good question, unfortunately something we also are
and had to deal with, the other siblings, who thought they were
doing all the care giving.

Because they had the POA of everything,
they decided to sell her house (a two flat) against her will
they stuck her into a nursing home, and
after recuing her from that nursing home,
she was returned to us, anyway.

In the apartment and not in our old neighborhood,
so (when the always and continuing now nonhelping siblings) all they managed to do was; take away our support system we had developed with our long-term (mother and son's) neighbors of 45+ years.

We are getting to the point where our 86 tear old is very needy
and it is very exhausting.
Is this my towel, is this my bed, what pajamas do I wear.
Combing the hair is a light swish in the front only,
as long as the mirroe says her hair looks combed,
but really isn't that is good enough.

Fortunately and unfortunately, she goes to a daycare,
so everything must be done OK or she will go back
into a nursing home, we feel there can be no bad or
down days in her care, as she will be whisked away
against her will.

She has a guardian appointed by the court, who charges150 dollars an hr.
to take her to the doctor and have a meeting with us was four hours,
at the tune of $600.00, we take her for free.
That six hundred dollars comes from the ($400,000.) sale of her home.
The guardian gets paid.
The guardian et litem gets paid
The lawyers get paid.
The daycare gets paid.
and we,
we get zip.

I am not family
and was not even asked,
if I wanted to do the caregiving for free,
I was told in a court document,
I was doing it for free.

After caregiving in an emergency mode as her upstairs neighbor, from (2006-2011) because her children and his other siblings refused to acknowlege or find alternative solutions, I was the caregiver.

2011-2012, Failed attempts at assisted living and other siblings, her children, who thought there was nothing to care giving left her at 95 lbs.

2012 -Now we are one year into court supervised caregiving,
she is doing wonderfully, weight is back to normal,
eating and doing well.

We have entered the defiant angry stage
of alzheimers, where combing her hair for her,
signals to our 86 yearold, that she is getting beaten.

and I say, I AM NOT GOING TO JAIL
for a false allegation, and
there was my line -drawn in the sand,
whether i wanted it to be or not.

I am graduating on Monday,
have student loans to pay off,
am 56 years old/disability
and at our last meeting with her
the guardian says to me, what are you going to do now?
And I said, get paid for caregiving.
The guardian then said, that amounts to XPLOITATION OF A SENIOR.
after giving it some thought, what was the six hundred dollars,
she just got paid for taking our 86 year old to meet her other doctor
and having a meeting with us?
YOU HAVE GOT TO BE KIDDING.

Mom lives between two of my siblings. I, along with a caregiver, take care of
her needs during the week. I have told them I am not giving up my weekends too. So, I just don't go over there. They take care of her on weekends or she is alone.
Harsh? Maybe. But, it forces them to help. As long as you do it for them, they won't help.

It is a silent hell. You feel as though you will lose your mind. You love your parents but this they really do not know what you are giving up...they do, but yet they don't because they either did it or have been raised to believe you should care for your parents. Your siblings feel guilty if they love your parents, but that guilt cannot compare to your heartache and madness you feel. Hate and weight loss is what I experienced. Hate is an awful thing. Good days and bad days but nothing can compare to your freedom--a freedom you never realized you had until this happened. I get it.

I love donahueg's statement: "Forget understanding...get help."

You can't count on your siblings, whether you could make them understand what you do or not. So find other ways to take back and least a portion of your life.

Dear mege27,
I don't have the perfect answer to your question and I don't know if anybody else has one either. Unless one is in the trenches 24/7, even for one week, they will never, never understand what you/us are going thru and how it affects every part of our lives. Is it possible to ask one of your siblings to take over for you for one or two weeks while YOU go on a vacation? I know that this will take care and compassion on their part and they just may not have it or it might "disrupt their schedule", but gosh, hasn't your life schedule been more than disruptive? Your life has been put on an indefinate HOLD. Are they logical and competant enough to understand that YOU need a break? Nobody could be that stupid. But many can be just mean, uncaring, uncompassionte, and selfish. And ask if they really love Mom and Dad, please spend a week or two with them? If they say they cannot because of work, wel,l can you ask them when their vacation schedule comes up to do it then? Is it possible to have a sit down with them and explain how you feel and what you are going thru? Nobody is that stupid or illogical that they are unable to understand; unless they are so uncaring and selfish that they do not want to understand. I don' know about this, maybe trying to put the guilt trip on them, tell them something to wake them up--something spectacular--even if its not all true, but you've got to find a way to make them WAKE UP. A good kick in the butt while sleeping will wake any body up. I don't mean to kick them while they're awake, or really sleeping, but just used that phrase as an idiom.
My heart and prayers will be for you mege.......

I gave up with the idea of my sis and bro understanding what my life was like. Why? Because they don't care. I, too, got the "you have a place in heaven" type BS from them. But I also was the one dad asked, why does your brother only come to visit when I'm in the hospital? I told him I wish I had an answer. "Have you talked to your sister lately?" Nope. When my dad took the opportunity 5 days before he died to say his goodbyes to each of us, it wasn't them he thanked, it wasn't them that he told that he didn't know what he would have done without them. No, for sis it was have a good life. For bro it was I wish we could have talked more. Dad thanked me all the time. I would always say no thanks was needed, I was happy I was able to do it. He had always been there for his family. Sis and bro maintain some stories about how mean dad could be. Guess they must have learned that from them. Wonder if they feel good now after "punishing" him for his meaness by ignoring him, by walking away from him when he needed his family most. I'll never know because I don't plan to continue any sort of relationship with either of them. I pretended while dad was alive so as not to upset him but I don't have to pretend anymore. I know dad is in a place where he now sees the reality of the situation. As much as I gave up to care for my dad, I gained so much from the experience - having my dad become my best friend, so many memories. They got 1/3 of his estate. They have to live with themselves and their decisions.

There is something that says " a son is a son until he marries and a daughter is a daughter all of your life." Pretty dang sad but seems to be the norm.

Please just accept your siblings as they are...you are only hurting yourself to be bothered by them. they are the losers. Get some kind of help, so you can have time away. You have to take care of yourself first to be an effective and healthy caregiver.

Best wishes!

I can too well relate to all of the above. My mom is 97 and I have been her primary caregiver for 24 years. My brother and sister, although retired, do basically nothing but try to give me advice. I think 1 key is to look for your support elsewhere and you might find it in surprising places. If you are like me, you have a strong feeling of "should" when it comes to your siblings. If you can focus on others (even paid) who do help and minimize resentment toward your siblings, it helps. (I know, easier said than done.) Compassion is an interesting ability and give yourself credit for having it. In many ways give yourself credit because you are now part of my "well respected" others when my brother and sister are not!

You can't. That's something they don't understand, won't understand, and refuse to understand.

I have been taking care of my mom for 11 yrs. She had 2 strokes and has had alot of other illnesses as well. I live next door to her and I live with her. My husband and I haven't been together for a long time and it is putting a stress on us both. He is not well himself. He has a illness which causes him to get blood clots. I have 3 brothers that and 1 sister. I'm the youngest and all they say to me is you are an angel sent from heaven, we wouldnt know what to do without you.
I am depressed and angry and my daughter had a baby 8 months ago and I can't even spend time with my first grandchild. Mom is depending on me all of the time. We argue alot and thats not healthy. My family doesn't think...They can go on vacations and have a lot of fun while I sit at home and take care of Mom. Sure I have help from DSS and some from Respise, but for me they don't stay long enough. I can't even get my house cleaned.
I have decided that if goes into the Hospital I will not call them. They do not come to visit her at all. What wrong with siblings today?
I can't enjoy my life and it isn't fair.

I feel bad for the parent who wonders why their son/daughter doesn't come by to visit or call more often, especially knowing that they are retired & certainly have the time, if they'd stay around. I'm the main caregiver, although Mother (91) is still in her own home with private-pay help and Hospice. This is where she wants to be. And I'm the one she always asks where's your brother? Have you heard from him? Why doesn't he come to see me? I make excuses for him so as not to upset her, but it irks me that he has basicly "disappeared" from her life other than a holiday/birthday card. He was her "first-born", as she puts it.

My h usband and I take care of his grandma and been living with her in her home for over 2yrs now. He has a sister but she never offers to come over and give us a break. Instead we have to pay some to come in and give us a much needed break. My husband and I are both durabable poa's and take care of everything. My sil never comes over and when she does it's only cause they want something mind you she only lives 9 miles away before that she only lived less than a mile. Grandma tells us everyday thank-you for what we are doing for her.
It does make me mad at the sil but she the type of person out sight out of mind. Sil expects us to take grandma over to her house. Grandma just turned 86 so she's no spring chicken. We don't call the sil unless we want her to know something or to see if they are coming over for the holidays.
Sil called about a month and told grandma that she'd come over to pick her up and never showed up. This really ticks me off and to make it worse grandma remembers that. Well, grandma is still waiting and grandma was looking forward to it.

msdiva, How awful yes its guilt and jealousy. I am so sorry you have to now deal with this. It never seems to stop in some form or fashion. I hope your brother takes heed.

How my family can be so cruel, i go to the cementary every two wkes to take my parents flowers and sit and talk to them everytime i go they disappear and i can't figure out why last week i order a plaque to put on their resting place its called the BROKING CHAIN i know some you have heard it.. i went yesterday and it was gone i couldn't take it no more i went to the office that sats at the cementary and i ask then had they had any vandalisum here lately and they said no.. he ask me who was visiting and i told him my parents and i gave him the name he said several people had came and it usually after i come and he said he has seen someone there i ask him did any one of them look like me in somewhat and he said yes i called the police there is 11 of us and i gave them all there names and addresses.. to see which one had did it of course my family memebers are liars but i told them each and everyone of them if they touch anything i put out there i will press charges my brother spoke up and said you do not deserve to put anything on there..well he told on hisself i told him if he do it again i won't need the police anymore...why family members half to be so cruel...its all guilt

Very good for you fernando I am lucky my husband and I both helped our parents many times on my side when they were just lazy but I couldn't see them put out on the street. There were times it put strain on our marriage but we over came it we helped all of our parents during the transition to death and now I am on parent number 4 I do hope hubby and I have some time for our selves before its our turn but you have to stick to your guns and there are so many selfish people in the world, but.. look around you there is us to. God bless you

some times its the partners of our siblings that can be the problem, they can hold them back by just a word. mind you i am not making excuses for them, for i have fought the demon of resentment many many times, and i have learn the lesson out of sight out of mind does work both ways, but i can't but think they have a big part in the sibling finding time to visit, now i am a man and when i start going out with same one new, at first it's how nice that i look after my folks but things change, and it's like they get jealous and they start trying to put a wedge in between us, i see it and i refuse to throw my folks aside for anyone it's a hard life, but i am willing to fight for them, because that the right thing to do

Thanks so much for your concern, very thoughtful of you.
I do have POA.

Nance. Do you have POA, finances and health? If not, get it and protect yourself!! Trust me, when my MIL died, my SIL had done all the work, but her older brother kept on bothering her for the money. Even when the funeral home charge us too much and refunded some, he called her for that. Take care of yourself!!

I did to when I first started this adventure but they don't and it's because of the way they were treated as kids. I was to but I have a compassionate heart enough for all of them I guess because I had to take care of them when they were little i am only 4 years older than my sister and 8 years older than my brother but they forgot they don't even remember the bad stands out too much for them I guess and I'm not covering for them either because my childhood and teenage years were hell the first time I tried to commit suicide was 13 and I tried three more times. It has screwed up relationships I carried a lot of baggae for years but I grew myself and am over it for the most part I said if this finger ever gets healed the name of my book will be growing up with a narcissistic mother with a splash of alcohol. I still plan to do that, If I don't sell one copy it will be theraputic for me.

My A-hole bunch isn't interested either--I just get bitter about the situation.
Guess I have to grin and bare it-I'm sure they will get their just reward.
I'm finding out that ya can't change them, I just wanted them to care.

I agree don't tell them anything. If they want to know they have your phone number, email and if all else fails your address, mine are NOT interested so I no longer say anything. When my sister thinks she's helping by sending me some sort of stupid information I just delete it If she persists which she doesn't I tell her it did not pertain to my situation. Its still a little hard not wanting to include her an have her as a little moral support but she never was there so I don't know what I miss LOL Just that she didn't want to hear about it she has enough to deal with LOL ROFL so now when she emails I stick to the point and sometimes they are just one word answers the rest of the time it is delete. It is getting better. Just takes time and practice I never needed anyone before don't know why I think I need someone now just that it would be nice but nice is not part of our family. Do what is right and it will all work out and you will be proud of you and the resr well they either will be indifferent or envious but that is up to them.

Elizza is right. Don't include them in the loop. Tell them nothing. Send no emails or phone calls. Sooner or later they will get the message. I tell my brother nothing. I was so angry at him for refusing to help when my husband was in the hospital, I stopped calling. They picked up the phone and called, but I would not call them. I was so much better for not having to deal with them. I still don't call unless I have to. Works great. Out of sight, out of mind works both ways!!!!!

I would not answer any e-mails or give any information. That helps them to stay away. Everyone is responsible for themselves and if they want to know, they should visit and see!

I agree with aew2004 - you are doing what is right for you and you are better off for it.

I also agree with lovingdaughter - send bills regularly. It might make a difference. It is beside the point but it might help you feel more in control.

We have to do what we have to do and good for those who are giving care! Hopefully, we can find ways to just see the good about this and not allow others to take the good feeling away.

Nance
For situations that we cannot control, it is better not to stress ourselves over it. I know it can be very difficult, especially when they are family, howeve, sometimes, it happens and when that happens, we have to remember, why we are doing, what we are doing and what it means to the person, who is receiving our care and let that comfort you and do not let the bitterness cover that. Your siblings will have to deal with their own behaviour, in their own time. You just take comfort in the FACT that you are a good and caring daughter.
Take care and congratulations for being a filial child.

Thanks for that, I guess I know that it's useless.
I just want them to love her like I do, she would never treat them the way they do her.

Nance,
You can't change them. They are clueless and insensitive. I know how hard it is since I am still struggling with my idiot brother, but let it go. Send them a bill for your care and tell them that you will deduct it at the end. That may wake them up!!!!

Just when I think that I can let go of the fact that my sisters just don't give a damn, bitterness steps back in !!
I will never understand how they can just ignore the situation.
They don't visit Mom-one does e-mail me to ask how she is-the idiot lives 15 miles from the NH.
Where's the hope that things will get better?

aew2004
Thanks, I needed that and I am sure did meg,sooz ,neon and all the rest of us on the front line.