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I do understand what you are going through. Though I am younger I had to make the decision to find a facility for my grandma I've been taking care of. Now I'm on the road to get my license and to get a job and start my life. It isn't easy. My grandma raised me and people kept telling me I owe her and I should take care of her but its near impossible to do and hold a job and go to school. I'm emotionally and physically burned out but I'm slowly rebounding. It's not easy to visit the one who raised you in a place that isn't home. But sometimes you have to make a hard decision to assure safety for both. Hugs.
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Do we really have to become prisoners in our own homes? Aren't we allowed to have fun? friends? any kind of life but caring for our elderly? Something really seems wrong with this picture. Very wrong.
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I agree Ferris1 except for the whining part! This is a good place to whine and vent because it will lessen the pressure and people need to have a safe place to let off steam. Shilaflores- I think you might need to find some adult day care in your area or find a local person who can come in and stay with her for periods each day to give you a respite. You will be able to refresh yourself and maybe get some exercise, see a movie, visit a friend, take a walk in a park, etc while someone else is there. Do look into getting the help you need. If money is an issue, check with the department of human services to see if there are free or inexpensive programs to help you.
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I honestly don't know how to answer your question. I wish I did, because I am going through the same thing! I'm going through the same emotions as you are, and I'm exhausted! What Ferris had to say was very inappropriate and cold. We all need to vent, and we all need to support each other, be compassionate, and lift each other's spirits. It's not healthy to hold it all in.
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I think this site is a great place to vent...there are many of us who have no one to talk to...I am so isolated that without this site, I might go completely nuts! Thank you for caring enough to let me vent.
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Shila, I understand how you feel at present. I spent past 11months supporting my mum through her last stage of life journey. She has ben battling cancers since 2008. Sadly she lost her battles and she passed away 6 days ago. In reflection, I went through all the emotions that most of us on this website havw epereinced disregard the cirsumstances of our parents were in at the time they need support. In one way, I felt it was an honour to be able to take care of our parents in similar manners that they have done out of love. Yes, our own children will 'model' our attitude one day when we need .their support. Yes, the burden of support may rest on the shoulders of one child like I did. Yes. I moaned and complained time and time again. TOday, I reflect and feel tht I am so lucky to be able to repay my mum for giving me life. Yes, I am so very grateful for this webste for it has been a huge support to me the past 11months. Hugsxxxx Shila, your mum will be thankful for your 'love' which nothing can replaced its valu Juliek
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I totally feel for you Shila. Caregiving to anyone, full-time is physically, mentally, and emotionally draining and exhausting. I understand your statement. I'm sure there's people who said worse. It's not easy, but try to stay in peace, and understand, your Mom's mental disabilities too. Get time out, to get to your nearest caregiver support group. They will give you the best advise, what to do in situations, Ideas to get out and give yourself a break, Ideas to make stressful times easier. How to grieve, even while you're caring for your Mom. The meetings can be therapeutic in itself. I always felt better after every meeting, mentally, physically, and emotionally. NOT so drained, and exhausted. You are a good person. God Bless, and take care.
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I CAN'T SAY I CAN RELATE, BECAUSE I DON'T REALLY KNOW THE WHOLE SITUATION, BUT I CAN SAY THAT I FEEL LIKE RUNNING SOMETIMES. MY MOM IS 96, SHE'S HAD 1O CHILDREN, WHICH 6 BOYS ARE DECEASED. I HAVE ONE BROTHER LEFT AND TWO SISTERS. MY MOM LIVES WITH ME. SHE HAS A BAD HABIT OF SPITTING. NO MATTER WHERE SHE IS, SHE SPITS. I ASK HER WHY, SHE SAYS "BECAUSE SHE WANTS TOO". ITS TRUELY EMBARRASING TO ME. SHE HAS DEMENTIA, I'VE BEEN CARING FOR HER FOR 6YRS. THERE'S TIMES I HAVE TO WALK OUT OF THE ROOM TO COLLECT MYSELF. I HAVE NO HELP. MY OLDEST SISTER LIVES 1 AND A HALF HOURS AWAY. SHE COMES TO TOWN AND WON'T EVEN COME TO SEE OUR MOM, SOMETIMES SHE'S IN TOWN FOR A WHOLE WEEK AND WON'T COME BY. SO THERE ARE TIMES I FEEL ALONE IN THIS. MY OTHER BROTHER AND SISTER CALLS OFTEN. I DID'NT MEAN TO GO ON AND ON, BUT I JUST WANTED TO SAY, YOU CAN GET UPSET, DISCOURAGED, ANGRY, AND WANT TO GIVE UP. I THINK ABOUT ALL THE KIDS SHES RAISED, NOT JUST HER OWN, AND I SAY IF SHE CAN GO THROUGH ALL THAT RAISING HER KIDS AND 30 OTHER KIDS IN HER LIFE TIME, WHO AM I THAT I CAN'T DEAL WITH ALL OF THE FRUSTRATIONS. I DO OWE HER THIS. I'M STILL GONNA GET MAD, BUT I'LL KNOW I'M DOING THE RIGHT THING BUY CARING FOR HER. WISH YOU LUCK AND I HOPE ALL GOES WELL WTH YOU.







'
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Shila, I'm going to be honest. It isn't easy. I had my mom live with me for 33 yrs (since she was 62) . My only regret is not having sought outside help when she was in her 80's. My mom was active (despite the COPD, and heart issues and alot more) She drove until she was 90, insisted on being independent (which caused me more heartache at times because I was the one who had to take care of her when her independence lead to accidents, illnesses, etc) When she had to give up driving it was horrible for her, but she adapted. It wasn't until she fell at the age of 93 that helped me find out there were resources out there that were available to her because she was a senior. I was finally given a little help with mom. She was allowed to get someone to come in and help with housecleaning (she had her own living quarters downstairs) and running errands. Initially she fought me on it, she didn't want "strangers", but finally she realized it was helping me. Had I known about these provisions it would have saved me alot of irritation. That's what would happen to me when I would get "overloaded" with caregiving. Going through menopause was not pretty picture either. I can only share what I learned, and that is to get help if it is available. If it isn't do the best you can, but try your best to take care of your own health too. I lost my mom on Jan 1st, 2013, three months to the day of having her taken by ambulance to the hospital. I knew then she would never come back home to live, which was extremely hard for me. I loved her so much and I miss her, but I know I need to take care of myself now so I can live a long life to enjoy my grandchildren and hopefully live long enough to enjoy my great grandchildren (when the time comes) the way my mom did hers. Take care of yourself as you take care of your mom. This site was also a lifesaver for me during the last 3 months of mom's life. I could vent, learn from others and get comforted all because of this site and the new friends I met.
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Just think your childhood. Parent are parents.they scrifice so many things for us. now its our time to take care.your mom is not well she is help less. She needs you. Dont be selfish.
If u are not able to do becuase of your health or whatever you can take her to old age home but dont forget to visit there and keep her happy.
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Everyone in this situation needs an outlet of some kind. I have to laugh at myself cause one of my often used outlets is while I am driving in my car. In there, I yell, scream (even at my imaginary mom), other people. I voice all kinds of things--playing devil's advocate. When all is said and done, I have released some pent up anger and sometimes was able to talk some things through. It's a nice safe place. Other drivers who may see me just think I am talking on a hands free device. Just a thought. It serves me at least.
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no compassion ferris 1? You are NOT helpful.
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Being even a part time caregiver is terribly difficult, and this is the place to let off steam and share. It isn't whining, its frustration. My heart goes out to anyone who had to do in home care because they have no choice. I can't imagine living with Mom every again. Some people are impossible to live with, and usually those people had most of the same traits when they were younger only now it is much much worse. In the past 35 years my sister and I both have lived with Mom at one time or another. She was needy, hovering and impossible then and even more frustrating now. Thank God she has enough money to live in senior housing. We love her, do everything for her, but we both know living with her would end up destroying our marriages and ruin us. Do we feel guilty? Yes, somewhat, but we know that she is safe and taken care of and we have not abandoned her. It took years for us to accept that she is a negative unhappy self absorbed person who will never be happy wherever she lives.
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Yes, Soozieq, you have hit the nail on the head. I live with my mom for 10 yrs now following my father's death. Mom had a stroke in '09 leaving her with gradually declining short term memory. It IS difficult as she and I were never close to begin with and I always found a great gap in our personalities. It is unfortunate that she cannot afford senior care in an assisted living facility because we all would be better off if she could. As it is, I, as the oldest daughter (and single) have been kind of relegated the responsibility for her care. It is too easy to say it's the illness that makes her the way she is. To some degree that is true. However, a whole lot of her personality is in there too making her very difficult to live with. I had trouble with her growing up and I still do. I would not feel guilty in the least if she had another living situation to go to. It is not unnatural to have negative feelings towards them. I think this situation will destroy me before it is all said and done.
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I feel much the same way about my husband. I am trapped in a loveless situation, and I am a prisoner in my own home because I can't go anywhere or do anything because I can't leave my husband alone. I hate my life and want it to be different, but it's not going to be and it's what I signed up for when I said "til death do us part". It sucks and I'm mad and I just want it all to end. But it won't so I have to "suck it up" and live with it and have a rotten, terrible, lousy existence because that's all it is...an existence. It's not a life. I just go about my daily chores like some slave who just does what they are told to avoid any hurt. Don't get my wrong; my husband isn't physically abusive. It's just the existence we have because he is sick. We can't go anywhere or do anything because he is too tired, too dizzy, too weak, too everything. Besides, we don't have any money to even go out to eat. There are repairs to be done around the house that we can't afford to have done, but he is too far gone to recognize them. He looks at the world through rose-colored glasses and thinks he is fine except that he is weak and dizzy and tired all the time. He doesn't know his mind is gone...or he just denies it. I used to be scared; now I'm just mad. I hate what is happening to him and to me, but there is no changing it or fixing it. It will just continue to deteriorate until I just curl up and die because that's what happens to caregivers. They become robots with no love, no feelings, no nothing but to care for those who we have to care for. Often the caregiver dies before the patient because all the life is sucked out of them. It isn't the patient's fault. It is the disease, and no one cares. They just say it's your responsibility and it's your vow and it's your lot in life so live with it...life's a b*****, then you die.
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Scared........ I sure wish I could sit here and write something that would make all of your hurt go away. Unfortunately I really believe what you said, that care giving sucks the life out of us. You can't describe it any better than that. Let's face it, if we didn't love our parents/spouses, we wouldn't be caring for them. I too, have felt that my life is pretty much "doomed"! I have sisters who basically will call and cry.....saying: "Oh it's so sad that mom is no longer remembering us"..or "When I come out, I'm going to treat you to a WONDERFUL dinner"!!! GIVE ME A BREAK!!! A dinner???? Whoe...Pinch Me, Please!!! Now THAT'S going to make me want to keep feeding and wiping moms ass!! One of my sisters even had the nerve to call while she was out doing Karaoke with her friends, and said: "I'm thinking of you"!!! What a CROCK!!! Do I sound bitter??? You bet I am!! Once in while I will go over my "life" and wonder if I'm getting a "payback". I mean, quite frankly, I haven't been the best person in the world, but OMG......this? But, just like you Scared, I will keep chuggin' along and if all of you don't mind, I will "vent" on this wonderful website, because I know many of you (not all), really DO understand, and I truly appreciate and thank you all for listening/reading, whenever I need to be bitter, sad, angry, or happy! Thank you so much!
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my mom tries to move at least once a week.She thinks shes going back where she just moved from last december.I have recruited help,finally.I just said if you don't,you can get her a place in the nursing home.I had to for my sanity!!Vent away,please.
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LOL! Yes, I know all about the moving thing! My mom plans her trip back home to Hawaii every other minute! I recently DID just find a nice residential home for her. I've been picking her up on weekends and having her stay with me. I fear, though, this will change, as caring for her is getting more difficult. I think the over "nighters" will soon be a thing of the past. Thanks for your comment.
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You know, I should clear up one thing........I'm not bitter because I'm taking care of mom. I love you and will do all I'm capable of doing. I'm bitter because I have sisters who are NOT there for me, but claim to care! I don't want their tears, their "dinners", their "claims for caring"! I want them to care about MOM! At least a little! There....I got it out! Ahhhhhh that feels better!! LOL!! Have a great day ladies! I must get to work now!
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OOPS.....I meant to say: "I love HER", not "YOU"...although I guess I could love all of YOU as well!!! lol
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Yes Marlenja123. My sister and I have not spoken for a year over her judgement of me and how she thinks I should be taking care of mom and yet, guess what? She does not participate in ANY measurable way whatsoever. She also puts me down for showing any kind of frustration. I say, "really"? Try stepping in once in awhile to do something and then you can have an opinion.
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Thx for the kind words. It's so hard when you wake up at 3:30am with no where to go, no one to talk to and having all that time in the black hole of night to think about all that you have lost and what you face come morning light. It really gets to me sometimes. Thx for caring. Good luck to you.
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and we love you especially for your honest share:))
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All I can say as I read both sides of this story is that no, it is not always selfish to not provide for all care personally if to do so is too draining and hurtful. Even a person doing CPR is permitted to stop if they are exhausted and cannot continue. It may be selfish to allow yourself to stay in denial or just not help or be sure a parent is cared for, sure, unless there was abuse of such a serious nature that contact is just not tolerable.

Now I know there are people on here who really do not have any other option than to endure. No funds, no one else to do respite, etc. I also know there are a lot of people on here who do not know they have other options and possibly do not look for them precisely because they judge that as selfish or feel they will be judged as selfish I have read stories of caregivers who died, one recently struck me as very sad because the caregiver was doing much more for the person than was even good for the person. I have read stories of abuse and stories where behaviors associated with dementia masqueraded as abuse and were taken way too personally. I have no doubt at this point that there are people who have always been mean, critical, narcissistic, ungrateful and otherwise just draining people all their lives, and that those of us who care for them now that they are all that and worse are just natrually going to be overrepresented here.

Look. Mom and Dad did not "give you life" just so they could turn around and suck it all out of you and essentially take it all back in the end. Respecting and honoring
your parent or is a commandment, and loving your spouse a commitment, and yet you don't necessarily honor them by destroying everything they gave you and neglecting the rest of your family as well as the rest of your own potential. Even if you are a caregiver for someone who has always been a ray of sunshine - and I know of people like that too - you need respite. And if your loved one needs 24-7 care it is NOT POSSIBLE for one person to do it solo, it is at best difficult for two.

And I know one more thing. This site is overwhelmingly about caregiver perspective. The people who need care are not posting very often, not as often as us. For me, an only child, and frankly a somewhat selfish person, there were times I had to make myself remember that it was my mom's and dad's own story they were living out and was never all about me...sometimes that was comforting, other times, it made me stop in my tracks and realize there was something more I could be doing and not resenting having to do it.

I once read that Mother Teresa looked at our often non-family caregiving patterns in this country and asked, "Why are they not living with you?" For the longest time I would have just looked down at my feet in shame, after all she was Mother Teresa. But now, I think I could answer, and tell her the good reasons and the bad. They would not be things like "I don't know how to operate a Hoyer lift" or "I can't change an adult diaper!" or "Because I just wanna go have fun and party instead.." they would be things like "because I would have had to abandon my son and daughter and end my career" or "because no one can stand a steady stream or toxic criticsm and constant demands to do everything immediately and faster, faster, faster coming from their own mom" or "there is only one of me, others who are able to help are not willing and I can't make them so, we do not quaify for in-home help; I can't be awake 24-7 and that's what keeping my loved one safe requires" or even "that's not even what Mom said she wanted."

Please, lets keep it real rather than sit in judgement. Those of you who are not being drained of all life and health in order to do a tough job that needs to be done and find it is a blessing to do it - well, God bless you! Recognize that you have a blessing that others have not been given, and it may not all be your own virtue and committment that has given it to you. I WISH fervently it had been that way for me too. I wish my kids had two, no four, loving grandparents who took care of their own health, stayed involved and played a big part of their lives even if things were not perfect. But they were who they were, they gave what they had to give, but lived in fear to greater or lesser degrees, and one built a wall of perfectionism and criticsm that never came down. I see my friends caring for aging parents who ARE as involved in their communities and in life as their health permits, and who have siblings that ARE doing much of what needs to be done, maybe disagreeing over details but surely not sniping at the others, or siphoning off funds for their own profit or pursuits, so it is not all on the back of one person. And I see them take it for granted...which maybe they should, since that's the way it SHOULD be. These people don't tend to be all over these forums for some reason, but yes, they are out there. Alas, they are not us.
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I too have my mom living with me and I care for her. The dementia has now progressed to the point she will not necessarily say that I owe her or rather she appreciates what I do. She never wanted to be a burden to anyone. Along with the dementia comes a person I sometimes do not recognize. She thinks I am being mean when I need to lift her because she refuses to stand or help in any way, she claims I am feeding her things that only animals in the woods would eat, and she thinks that the $300.00 cash that she brought with her 6 years ago should still be feeding us. This is not how she is 100% of the time and there are glimpses if who she was occasionally. There are days I look at her and cry because I miss "mom" and there are days I feel overwhelmed and either tearful or raging inside. I sometimes snap at her and then feel enormous guilt because she always treated me and others with love and compassion even when, I am sure, she felt some hurt or anger toward me as a child growing up.

I was raised with my grandpa living with us. He never needed the care she does but when she could not be on her own anymore it felt natural to bring her home with me and my family. To claim its been easy and all daises would be a lie. I do not feel that I "owe" her but I do feel that I am maybe somewhat paying her back for being such a great mom to me. At the same time, I do feel very trapped at times. Getting out helps some. My daughter is a caregiver for her too and allows me to just get away some. It keeps me sane though I am sure sometimes my family would argue with you....lol.

Basically, don't feel any guilt or like you HAVE to do this. Do it because you feel that is what you need to do or want to do. Its a hard road to walk down and make sure to take care of YOU. You cannot care for her well if you are not well. Most communities have some sort of care available to give you a break and that will help. But we ALL feel the stress and rage at times.... and anyone that says they don't is lying. This website has been a treasure for me as I know I am not alone and also gives me feed back or advise form those that have been there done that or going through it now and we learn or confess together! Hugs to you.
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Yes. Caregiving does suck the life out of us. And at times I feel like I'm just "existing" from one day to the next. But then I remind myself why I'm doing this. I love mom, and she's always been there for me from the day I was born. I know I wasn't always the easiest kid. Far from it! So now it's time for me to take care of her the way she took care of me. But to all the caregivers out there -- we do need to take time out for ourselves, for our sanity. And we do need to reach out to others for help. We can't do it alone. I'm finally finding that out. I hate the exhausted, touchy person I've become. So before things escalate, I'm going to search out help. Caregiver Support Groups, and even this site, are a big help!
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Daughter 52.......Thanks for your comment. It truly is sad when one sibling has to completely be the caretaker, without any support whatsoever. The one thing I can be certain of, though, (as I'm sure you can be, as well), is that when mom passes away, I will be the one by her side. I will be the one that carries the memories of her last days. She and I laughing and/or crying together, me taking her for walks around the mall, listening to her stories over and over and over and over..............again and again and again.........and each time I answer as though it was the first time she's told me this story! Anyway, who knows if our siblings will ever have regrets or guilt. If they do....OOOOOOOh Well...."Se La Vie"! I have what they'll NEVER have! The MEMORIES!!!! I plan to make as many as I can until that sad day.

So hang in there Daughter52. As difficult as it may be, it's still going to be a sad day when mom leaves this world.
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why do we have to go through this... i too want to curl up and die...
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Dear Scared,
I was touched and so saddened by your words. You sound very, very hurt and your job as a CG is getting to be too much for you. I understand. I took care of Mom and Dad too but now they have passed. I am hurt because you think that you have no life and no future and no nothing. I wish that I could send you a comfort fairy or something to take the heavy burden off of your heavy heart. You chose to be named "scared" for a reason. I know you must be scared, I was too. The only thing I can give to you is God. Remember God. Remember Jesus Christ. Remember He said that this world is only temporary, your real home is in heaven with Him. Eternal life is free, this broken world can give us nothing that lasts forever. I know that this is very difficult because all you see is loneliness and pain. That is all I saw too, I saw only the mountains, only the huge mountains before me. But please remember, Jesus can move the mountains if we keep our eyes fixed on HIM. But please, if you take a little moment to honestly just say, "please, please help me Jesus". He will hear you......
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I am not going to give you platitudes. People whose parents were loving and put you first in their lives are still difficult to take care of. Add to that mix someone who has always put themselves first and everything was for "what would people think?" and you have toxic mix. That is me. I am not afraid to say that I do not "like" my mother. She is not a person I ever would have chosen as a friend. I kind of envy people who say their mother is their best friend. It would be simple if that was the case - well, simpler. I never had that. It is hell being with someone 24/7 that you don't particularly like, but must "love" since I'm doing it. That's what love is in my book, doing the right thing when needed for someone else. Don't get me wrong I'd much rather Mom be in assisted living. She acts differently when she's with others. It's a pattern of turning on the only ones who are there for her - I am her current target. It's very unnatural to have your parent as the center of your universe at the age 63. I am trying all avenues and something's gotta give. Living with an ungrateful, needy, self-centered person is very hard. Everyone thinks I do a great job, but I don't see anyone clamouring to help me. So, I plod on. I force myself to go somewhere every day, walking when it is nice, the library when it isn't. Just anything. Seeing another face and hearing another viewpoint makes you feel a little more human and not a doormat drwoning in a sea of negativity. Yesterday, when Mom had "fallen" - I really think these are calculated - I point blank told her that if she didnt get up by herself or at least help me get her up, this would be it. I would call 911, they would take her to the ER, then put her in rehab and then the nursing home. She yelled something hateful to me about not caring about her and then I left the room with her on the carpeting. I told her I couldn't do this if this is the way it was going to be. Period. End of story. When I came back a few minutes later she was up on her knees and half way up to standing and I could get her up. I know it is a matter of time, and I won't be able to handle her care. We've kept her out of a nursing home for 91 years, I would hate to do it now, but I can't and won't sacrifce my well being. I told her that "I'm sorry you is 91. I'm sorry are so miserable. I am sorry she sometimes has trouble walking, but IT IS NOT MY FAULT" I also told her it was totally up to her. It was her decision to participate in her own care or go somewhere they are paid to care for her. I've had it. Yesterday she was a different person after the lecture, so don't tell me she can't remember anything. I know her memory isn't what it used to be but she can definitely remember what she wants to. Mostly negative things, but she rememebered what I told her. Good luck. I am one that doesn't revel in the job. If any other person tells me how blessed I am, I might want to punch them. It is not a blessing. I'd tried hard to look at it that way, but it just isn't. I may learn something important through but it isn't a blessing.
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