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Today is Easter. I love Easter. I am blessed and I know it. I love my Mother and am blessed to have her still, but how do others handle a day like this. We have long been forgotten by everyone, including my brother, who at best, shows up once a week and stays an hour or two, seemingly enjoying pretending life is one big happy party.

I am tired, I am worn out, I am irritate. And I never know what to expect on these days. We are abandoned and ignored all the time, then, have no idea what to anticipate, from drop ins who, in my opinion, want to relieve themselves of guilt by making a little drop in visit, assuming it is welcome. It is not. From drop in visits from my brother, bringing his two sons or one son, or either son one of whom will bring a young toddler, whom I do not even know because he and his parents have done nothing to keep in touch with Mother during this entire two and half year ordeal. They all roll in on these kind of days like they are a sight for sore eyes. God forgive me but I don't give a flying rats behind if they come or not, but whatever they do I want someone to let me know.

This did not have to be this way, or maybe it did. Every caregiver situation I know of I find folks in my situation..it falls on ONE person to keep it all rolling and the rest of the clan just gets to roll along on their merry way acting like life is one big happy affair.

All I know is one day "after" i am so angry and fed up with all of these damn people I never care if I ever see them again. I sometimes envision myself, when that time arrives, screaming at the top of my lungs...now every one of you can KMA.

Am I losing it???? I am not a hateful person, or have never been a hateful person, but I have gotten so past giving a crap what anyone thinks of me for not being excited to see them dropping in, all dressed up in their fancy Easter duds, having a ball, telling me about all the exciting things they are going to be doing the rest of the day and yet, stopping by long enough to make an appearance...Am I the only one who at this point would just as soon people just stay the hell away from us?

Forgive me for being so tacky on such a blessed day. I am ashamed of myself...truly...I feel like I ought to be happy to see folks...I am not....I don't even want to see them anymore and have to pretend their little snippet visits mean anything.

When I needed them, no one was there...I asked them to be here, I planned events so life could continue as always, no one showed up, they don't even call. I am over it and them......I have just texted my brother to find out if he is coming or not as I am sick and tired of my entire day being ruined never knowing if someone is coming or who or how many of people, many of whom I don't even know...stupid, inconsiderate totally clueless people.....

Mama has been a peel this week. And I am worn out beyond measure. I just want this day to drift quietly by and my brother to stay up there at his lakefront palatial palace with all his damn family and leave me alone...I am so over having to kiss his behind.

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You are definitely stressed. When the visitors come, you tell them you need some OUT time and leave them in charge while you go somewhere, anywhere and unload your stress. Get an aide for a few hours each day and hand the bill to the wealthy brother. It's the least he can do.
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Yes, I need a break, but their help isn't worth a flip. Can't change her, don't change her, just sit there and enjoy themselves, root around in the house and look through things, then when I get back proceed to tell me what all I need to do. No, I've tried leaving, it only adds to the stress.

And forget getting anything monetary from the brother. That is never going to happen. They got their 3/4 of the estate back when my Dad passed some 18 plus years ago. I don't see any hope in the situation. I have tried to pretend holidays are still happy. they are pure hell for me. Mother could care less and I think I need to start facing reality that it only gets worse and worse from here....I feel like sometimes i already died and went to hell.
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Hope22, I have no answers for you but, wanted to let you know that your post made me sad. I'm so sorry you're going through this!!! I lost my mother 9 months ago. Her last Easter was spent in a Memory Care Facility.
I hope you can find some time for you today, if just a few minutes. You deserve it!! Little consolation but I will be thinking of you.
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Thank you for your responses and thank you as well for the hugs :) The day came and went, my brother came and I felt immediately ashamed as he was very sweet to me and so I felt like a completel heel. I don't know what is wrong with me, but I think, maybe, it is because I am facing the fact that unless something changes drastically, going forward, it feels like this is the last Easter we will have together, this is the last (FILL IN THE BLANK) holiday we will have together....I don't know, is it possible to maybe get angry instead of crying????? My heart literally feels like it is bleeding today I am so depressed, and forgive me because i do have Mama here with me, and I fear she definitely can sense when I am like this...I am trying so hard not to be blue, but nothing I do seems to help....so I thank you for the comments and for the hugs....I know God will handle everything according to His time....I am now feeling so ashamed of myself....
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There are times I feel mom and I are mostly forgotten but our sorry family has kind of died out anyway. The younger ones with kids certainly make no effort to invite us over or come see us even on holidays. I stopped getting upset about holidays when I realized as a bible believer that no one day is more special than any other, that we don't need to "esteem" one day more important than another (Romans 14:5 and the whole chapter is excellent, really, the books of Paul are very practical). Hope 22, I like you, I also wondered once today if this might be the last Easter that mom has any sense left to hold a conversation and came to the conclusion that it doesn't matter. I made her take off her durn jammies and we got out of the house and visited the niece for a spell and came back home, gladly actually; they all have too many issues, ha-ha. We had a good day all told.
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eh, holidays are lame. if it reaches 35 degrees on christmas morning, dont look up, im 3 scaffold jacks high on your chimney . rom pa pom pom , ( hor ) ..
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Cindyoh....I remember back when I could get Mama out of the house and at times I would get aggravated, but I also knew a day would come when I would not be able to....and sadly those days are here for me now...being totally bedridden now, and going from being constantly in a happy state of mind, to being somewhere that I cannot go....I try but I can't go and I know I'm not supposed to....I catch myself saying in my mind...I want Mama back....and I know she's right here, but yet, she's not totally....so hard...so very hard....
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I'm so glad you were able to get out with your Mom...it helps me remember those fun times... :)
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hope22, when I wrote that yesterday, yeah, I sure did think about the time ahead when I can't get her mobilized or won't want to try. She's getting slower, can still dress herself and feed herself, does semi-okay at the Chick-Fil-A or Arby's but probably not long till that will have to stop also. This past winter has taken more out of her, or maybe it's that Depakote the neurologist pushed or maybe the cataract that's gonna thank God come out in two weeks. She's less and less sure of herself. I can still run a few errands and leave her maybe for an hour or so. But the time is coming when there'll be not much leaving the house. I won't hesitate to get some help in here then. And my sister and I are going to start touring some memory care places on Thursdays (when I take mom to her hairdresser's) to see what's what for ourselves. Hope you're feeling a bit better. I get so angry and depressed with myself when I do get mad at mom.
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I know cindyoh...I do as well. I think I have decided over the course of the past couple of days I am not angry at Mama so much as I am using anger to mask sadness. The last two days were almost beyond overwhelming, but yesterday I finally sat down and while she may or may not have heard anything I had to say, I turned everything off and just sat there in the still and quiet and we talked...rather I talked about our life together. I prayed a lot too. And I am feeling more hopeful. I know time is not on our side here. I think I have mentioned Mama is 100% dependent on me, sleeps most of the time, but does on occasion wake up and when she does she is very wide eyed and acknowledged my presence. I live for those moments and know they are so fleeting...But I am going to live each day to its fullest and in the interim keep in mind what is to come for I finally realize now she would want me to be happy...I think I have felt guilty thinking that, but I know the worst possible thing I could do is to let this bring me to a point of total depression and sadness. I am going to celebrate each day and celebrate the life I have been blessed to live with this amazing woman as long as I can. Then when that day comes, I will be sad and I will grieve, but I am going to keep Mama in my heart and know we are only separated for a short time....Yes today has been much better...
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It's good to hear that you are feeling a lot better today, I've seen what you've been through as my parents used to care for my grandmom. Help is really not possible at times when they needed it the most. Which is why I became passionate into writing articles that is related to caregiving, aging and long term care at infolongtermcare.org. You must always remember that as a caregiver, you must also be able to care for yourself too, you also deserve happiness and leisure time as well as good health. If you can't find help from your brother or other family members, try respite care so you can take a time off. Find time to socialize with other caregivers so you would be able to talk to someone who knows exactly where you are coming from. There will be times when you feel that your body and mind cannot handle the stress and pressure anymore, and you will end up pondering on tiredness, missed leisure time or holiday breaks, so whenever you feel that you need a break, don't hesitate to take one.
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Hope22, I really sympathise with how maddening the family is. Easter Saturday was my nephew's wedding. I spent the journey there resenting all my siblings for not offering to help us get there (my nephew did. What, they're too busy to ask and he, the groom, wasn't?). In the Church, they'd cleared a space ready for mother's wheelchair but that meant she was third row back and at the side, she could hardly see the bride and groom. At the reception, they'd put her near my brother but miles from me, and next to three people she didn't know, and the table leg was in her way, and the lighting was terrible. It was freezing, it was noisy, there was no one she could ask to take her to the bathroom…

Then I pulled myself up. If they'd put me next to her, I'd have been cross that I was still on duty. They put her near my brother, and I'm cross because they're not giving her enough help or attention. They can't win, can they?

This is incredibly hypocritical of me because I don't do it either, but what we both, then, need to do is TELL our siblings and their families what we want them to do. E.g., you're annoyed because one turns up with a toddler you don't know (I agree about toddlers in general :/). But if he doesn't visit how will you ever get to know the child? What do you WANT him to do?

I agree totally about the communication. I cannot for the life of me understand why they do this, the turning up without warning, the inability to pick up the phone and call ahead. It is baffling and infuriating and PLAIN RUDE. Trouble is, it's been going on for so long that it has become too hard to say pleasantly "could you call ahead and let me know, please?" - because underneath that one is hissing "how dare you lack the basic manners to ASK before you arrive I AM SO SICK OF YOU?"

We need to spell out what we want. So… what do we want them to do?

I wish my siblings would invite my mother to things. I wish they would make time to visit her. I wish they would act normal, like they do with the rest of their families. What do you think?
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Wow this was a great read because you said what I think the majority of us, as "lone" caregivers, feel! I feel like you. My father said something to me once before he died. He said, "I don't want a funeral. Why should I pay for someone to have a nice meal on me and visit me after I'm dead if they don't make time to come when I'm alive?" My mother and I both concur with his thoughts. He's right. As far as I am concerned I do it all as well, and nobody (I mean NO ONE; not her twin sister, not our cousins, NOBODY) calls mom even to say hi. We are on our own. Holidays are hard for me too because it's just me, mom, and my 2 kids. But you know what, it's okay. I'm glad I don't have people dropping in because so much of the time they are coming for themselves to alleviate guilt or as a "duty" and not for the reasons they should. The way you feel, in my opinion, is not only normal, but justified.
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On Easter, I left my mother and father in law with my husband and his brother to go out of town and visit my own mother and family. My father recently passed in December, and it pains me to not be able to be there for my mother, and instead caring for my mother in law. My sister picks up all my slack of not being able to help with my own mom. My husband was upset that I left, as he has to change my incontinent mother in law and deal with his father's ALZ and change him, too, and deal with his combativeness. I felt that both him and his brother could handle things, and they did, however, my husband was resentful when I returned. The weather was beautiful and he wanted to do things outside but didn't because his brother provides substandard care. My husband felt trapped and has reached his burn-out phase. Holidays are hard. It seems as if when someone is about to pass away, you get this obligated feeling of "we need to make this __________ holiday a nice one, as he/she won't be here for the next one", and when they pass, every holiday for the next year is the first one without them. I am facing that situation as well, my father in law will be admitted to a facility either tomorrow or the next day, and it pains me to see the pain my husband is going through; that pain of feeling like you are abandoning your loved one by placing them in a facility. My husband's siblings are of no help either, oh they will come visit, but won't provide any care and we can't leave, either. All I see the is the visits are a lot of work for me..mom and dad both have to have showers, their downstairs area has to be clean, etc...and we have to entertain them, because sure enough if something isn't clean, I will hear a comment even though they won't provide any care. Couch rider caregivers, they can critique you but can't provide care themselves because "they have lives to lead". They know they will get their share of the estate weather they help or not. I resent the fact that it is so easy for them to sit and laugh and carry on when they are in my home, because after all, they get to leave in an hour or so and go home to their wonderful (or not so wonderful) lives. Hugs to you, Hope22. Take it one day at a time. We will survive!
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Oh Lord, help me....I sooooo identify with ALL of you and thank you for your responses...

You know, regarding the whole issue of letting folks know what it is you need. I can't even count how many times I have done that...Very gently , kindly, etc....doesn't matter...they aren't going to do it...any of it...

My parents gave us the most wonderful upbringing any two kids ever could have had. We watched them help all of their siblings, help with their parents...all of my aunts and uncles confirmed that it was my Mama and Daddy who put them through school, paid their expenses, etc...as this was during the Depression era and money was tight everywhere...my parents both left the "nest" and went out on their own...and the money they earned they brought home to help with their parents and siblings...

We were not wealthy as far as huge bank accounts went...but my parents worked hard and could manage money better than any two people I even knew. They were able to amass a small fortune due to their hard work ethic and knowledge of how to make it go as far as possible.

There is so much more but you get the general picture...and the wonderful people they are/were is what has made it easy for me to do what i am doing..well, maybe not easy, caregiving is not easy, but you get what I am saying...BUT....

I left my job, will soon be losing my home to foreclosure, and pulled my 401K to help with paying medical bills after the horrific life altering fall Mama had two and a half years ago. I assumed my brother would help with certain financial aspects of her care... I assume wrong...My brother and his first wife threw a fit after my Dad passed and were relentless on my Mama until they got about three quarters of my parents estate as they wanted "their part" THEN....Mama resisted as she wanted to be fair to me, but when I saw the toll it was taking on her, I told her do whatever you want to do Mama and so they got their "part"...so now I don't know what they suppose, but I have had some of the ugliest comments made to me about what a lazy "a" I am. ??????? REALLY?????

I have always been a huge animal lover and prior to the end of my previous life, I had several foster kitties that I had saved and when everything happened so quickly, I could do nothing but bring them here with me. I have sold scrap metal, pieces of my own furniture, and gone without any nicities of life since I have been home...I do my own hair, don't know what a manicure or pedicure is...look like crap most of the time and no one even calls to simply ask how Mama is, let alone ask if there is anything they can do...To be honest I am in such a state of shock over how my Mama has been treated it is like I am living in an alternate universe...I understand none of it.

I have been told by Mama's brothers and sisters that people might help us more if I was not the way I am...I don't even know what that means. These are people I loved all my life and loved to see them coming. I didn't ask them to stop coming. They just didn't come and I do not know why.

I do feel as Nikki99 said, the only time anyone does just drop in without calling they are doing it to make themselves feel better. the rare visitor (always someone whom I do not want here ie...EX MOTHER IN LAW OF BROTHER WHO ALWAYS TREATED MY PARENTS WITH TOTAL DISRESPECT AND YET WHOSE DAUGHTER MADE OUT LIKE A BANDIT WHEN SHE LEFT THE MARRIAGE AND TOOK MOST OF MY BROTHERS STUFF WITH HER......so I don't want that old battleaxe here for sure and yet she still comes....I have flat out told her NOT to come and NEVER for sure to come without calling first...does not matter, she does what she wants to do....

Dr. Phil could make an entire season off of what has happened in my life because of these people.. a bunch of greedy, self centered, self serving jerks....At Christmas I was informed that I did not need to be buying presents for anyone as they were not going to buy presents this year .....as it turned out...they bought presents for everyone BUT ME...and made sure I knew it...THEN, they chewed me out because I didn't buy a present for the current sister in laws grown grand daughter....sometimes I just make sure I remind myself that I am stronger than I think because I am not crazy...and none of the hatefulness has hardened my heart...

And yet, there is my sweet Mama...all of them drive by our turn off to the house on a weekly basis and NEVER stop to see her...it is beyond reprehensible to me...I do not have any way to fathom how they are going to deal with the guilt one day and I know there will be guilt for my brother...the others I doubt..but I know my brother well enough to know he is going to feel it...that troubles me for him. but I can't fix it...All I can do is be here for Mama, which is what I have done all of my life....

I LOVE the term "couch rider caregivers" hahahahahaha.....I needed that...and I totally understand that....I am amazed that the few folks who have drifted in find it so easy to comment about my yards, my brother complains about the house not being spic and span...it is clean, it is sanitary...maybe not like mama kept it, but it is safe and pleasant and our hospice folks have told me if they couldn't see my cats they would not know we had any and I have asked them regarding my homes cleanliness and they told me I keep an immaculate home and am an excellent caregiver...so why all the rude remarks to me???? What did I do to these people to make them hate me?

I have always bought nice things for the wives, the kids, the grandkids, given them money, and now I see I should have been putting all that in savings for ME, but too late for that...none of it appreciated, but you ask any of them and for whatever reason I am hated, despised, the root of all evil...I think I may have been responsible for a few of the world conflicts to hear them talk....I just don't get it...

My life has revolved around giving to my brother, caring for my parents, and spending what spare time I used to have in animal rescue...yet I am despised...go figure....yall are great!!! thank you so much for all of your kind words....and yes, we will make it....Easter came and went...thankfully without incident....one day at a time....
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