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I am with you I am in year 9 and maybe in the process of losing it.... However I have no family, spouse or children, and my friend/relationships have all imploded in this living nitemare! I feel I may be close to becoming suicidal....the lonliness is what is killing me...if I had even 1 person, as a constant, other than mother, in my life I think I may have hope but I am so alone idk what to do! So no you are not a whiner, long term caregiving is a soul sucker for sure!!!
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HI Everyone, Thanks for all of the kind words. Brothers refuse to help financially or otherwise. I have heard hundreds of times "take time off" and " take a vacation, I/we will watch mom". Guess what? It hasn't happened in 7 years, why do they still tell me this when they are out of the picture? No phone calls, letters, Birthday cards, Mother's Day notes, flowers, etc. I feel sad for mom, but then again, she speaks so highly of them and never gives me any praise. She will out live me at this rate for certain! If I can find someone to sit with her it's a. only a short while or b. very expensive! Either way, I have not been on a real vacation in years. If I can get away for a day I must return home the same evening only to endure this care of mom on my own. I would love to get away for a week or two, it's just not going to happen...sigh, oh well, my advice to anyone thinking about moving mom or dad in is "give it a lot of thought" and "are you ready to give up your life entirely", as I have done? There I go again, what a whiner.
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i always said that by the time my parents reach 90, either they both will be dead or i will be..........................well see what happens :-) W
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I won't last 7 years. I am so broken-hearted about my husband's dementia and inability to walk more than a few feet, that I just want to run away. I read on here about people have been dealing with this for 10-15 years! I won't last. I'll be dead long before he is.
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I am often at my wit's end with caring for my husband who has dementia and Parkinsonism, particularly since he can't be left unattended for even a few minutes due to his poor awareness of danger and the fact that he falls so easily. The few hours a week that I work at my part time job while my husband is at an adult day care program are like a vacation but I don't have any free time for fun things like movies or dinners out with friends unless one of our two children comes to watch their father. I have been sending my husband to a memory care assisted living facility for long weekends on occasion and really enjoy those days but it is a very expensive treat. Most of the time I feel trapped and resentful and I have only been doing this for about 2 years. I think they would have to take me away in a straight jacket if I had to do this for 7 years.
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As many of you know, I have 2 dementia patients. Fortunately my dh is not too bad off, but enough. Mom is still in the NH 100s of miles away. Husband comes up with schemes and problems for me to solve. When they both act up at once is when I am sent over the edge. So yes, most of the time at wit's end.
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Used, yes I am at wit's end quite a bit and my elder doesn't live with me.
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How do you get Medicare to pay for Comfort Keepers? Where can I find them?
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God bless your kind and generous heart!

Assisted living facilities offer respite care for up to two weeks (sometimes a month) as a way to "encourage" families to move their loved one. You are under no obligation, so don't be afraid to research this. Also, Comfort Keepers is a fabulous organization: they go to your home, they schedule up to 4-hr sessions, they'll do laundry/housework/meals, and Medicare could pay for part of it.
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I worked so hard to get help, but instead of getting help I've been abused by the very people who are supposed to be helping. I'm disabled myself with no family or friends. I've begged and begged for help. I've been told that the only way I can get help is to die.
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used2bhapi,
you definitely are NOT a whiner!!!! I am in the exact same situation as you. But, I have been caring for my chronically ill mother for over 17 years and have had so many episodes of where I think that I will have an extreme nervous breakdown!! I too do not get help from my brother and sister. They like to make a big show of coming for an hour or two and then leaving because "they have so many other things to do." Perhaps 3 or 4 times a year. It has gotten to the point where I avoid them at all costs. I have made my feelings known and they don't give a damn. Then it does not help at all when my mom tells people that when her other daughter calls her( for literally 4 minutes) she speaks to her with so much love!

Meanwhile, here I have been caring for ALL of her needs all of this time. When I was pregnant, when my kids were small, when I or my husband have been seriously sick. I have missed school functions for being at the ER or hospital room with my mom. My poor kids literally grew up in ER's and hospital rooms.

Too make it worse, not only am I her daughter but also her official provider. I have seriously thought of walking away from the provider part. But, she doesn't want anyone else coming in! I am so angry at times and I know that only those who are in my shoes are the only ones that know what it feels like. My sister had the gall to send me an email saying that if I need help I am the one that has to call her!!! They NEVER call me or email just to see how I am doing. They call my mom, talk to her for 3 minutes and never profound conversations. Then my mom acts as if she really is okay because she doesn't want to worry them. Well what about me???? As you can see I too am at my wit's end and I feel so damn alone sometimes. My husband is an angel for all of these 28 years of marriage and my children have too. But, it is getting to be too much at times. Anyway, no you are not whining. None of us caregivers are. We just are doing something that no one else wants to do.
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I've been caring for my mom for about 6 years, but only about one year in the same home with her. I now have to limit my social life to Sunday afternoons. And my friends understand and try to keep in touch by phone or e-mail. I miss out on some things I used to do with friends, but with no help or family nearby, I'm afraid to leave my mother alone too late at night. I'm fortunate that she is ok by herself during the day. When I can't get out at all, I will have to hire someone. I don't want to make myself sick. Feeling worn out is nothing to be ashamed of - I feel emotionally worn at times being responsible for every aspect of my mother's life from medical to emotional and social. That's why I give myself a break once a week, to recharge. It's sad that there are few good options for the elderly and some that sound good prove to be too expensive. People are living longer than they used to in the days when families took care of their elders, so it is more difficult to avoid burn-out. And family members often don't live close enough to help out. So hang in there and know that you deserve a break now and then, even if it's for a short time period. Take time for yourself early in the morning or late at night when your mother is asleep. I have to pretend I'm going to bed early sometimes, so my mom will go to bed too and I can get some time alone. I think this website is a great caregiver support group, so keep posting when you need to ask a question or just vent. Others are here who understand.
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Bless your heart... NO you are not losing it... Caring for someone we love is HARD!!! I would really encourage you to get a hold of your local Area Agency on Aging, they should be able to get you some respite care. If not you should be able to get some help through a home care agency in your area. I would also encourage you to get into a support group and PLEASE please, take care of you too...
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NOT available is what I meant to say.
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Are the other children just available or do they just refuse to help? You may have to have a meltdown in order for them to step in & help & you may need to specific about the help that you need. I find that setting a schedule has helped, after much whinning on my part, my sister in law now comes over every Thursday evening & that alone has helped a lot. You absolutely need help or you will get sick & be of no help to anyone, pretending to be very ill my also work to get the others involved. The squeaky wheel gets the grease!
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I agree that the hardest thing about caregiving is the inability to do anything on your own. I send my husband to an adult day care program 4 days a week so that I can work part-time - what I earn after taxes isn't much more than the cost of the day program but even going to work is like a mini-vacation compared to being stuck in the house with someone who cannot be left alone and is very angry and demanding. While I am able get out to work for a few hours at a time, I do not have any evening or weekend care for my husband except when one of our two adult children is able to come over for a few hours after work or on a Sunday afternoon. As a result, I am not able to go out to dinner or the movies with friends or engage in any kind of social activities. Since I am never available, most of my friends have drifted away. I feel trapped and isolated. More recently I have begun to send my husband for respite short stays of 4-5 days at a memory care facility but this costs more than twice as much as the day program so I can't afford to do it often. Those few days when he is there go by all too fast. I have been doing this for 2 years now and can't imagine doing it for 7 years. I honestly can't imagine doing it for even one year more. Two nights ago I had a dream that I had been diagnosed with terminal cancer and only had 3 months to live. (This reflects my waking belief that my husband will outlive me in spite of the fact that he is 11 years older than I am.) My reaction in the dream was rage at the fact that I had wasted the last 2 years of my life living this way. The only good part about the dream was that it motivated me to get to the bank on Saturday (with my husband in his wheelchair since there was no-one to care for him at home) in order to take care of the transfer of my husband's assets, something that I was advised to do by an elder law attorney months ago but somehow didn't follow through with. I know I am rambling all over the place here, but I have had a very difficult night with my husband and have really begun to worry about my own health because I have high blood pressure and a strong family history of relatives who died in their early 60s (I am 68) from strokes and heart attacks. My marriage was never very happy even before my husband got sick so the situation I find myself in now feels unbearable most of the time. I feel that I can't continue to do this much longer and am beginning to look into what kind of residential options there may be for my husband so that I can reclaim my life.
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This is what “StoicMan wrote a couple of frames ago: “American old people are selfish and think that somehow the grim reaper isn't coming for them. They are bankrupting the economy with their unreasonable demands. I suppose many children put up with it hoping for a payout in inheritance. My advice to you: it ain't worth it. Walk away”
I had to frame it and put it in my response so everyone would understand where I’m coming from. This is the type of attitude that a lot of siblings of caregivers have toward their parents. Stoic, I don’t even know why you are on this site. Your attitude sucks, stinks, etc. Your attitude just reeks of the type of sibling that does not participate in the care of family and lets someone else do all the work and then collects the inheritance.
Don’t you know that not that many years ago there was no such thing as an “Assisted Living Facility” for elderly people. There were no Nursing homes or hospices. Families took care of each other from birth to death. The necessity for and growing need for these facilities came about because of the need for the two income household so no one is available to care for aging family. We are warehousing our country’s wisdom, losing the opportunity for our children to learn from their elders, and participate in caring for aging family, the cycle of life as it were. We have lost so much by “putting them away”.
Please tell me I’m wrong, I’ll be glad to eat crow and apologize.

Used2bhapi – YOU ARE NOT WHINING BY ANY MEANS. You are providing a vital and valuable service. Bless you for hanging in there as long as you have. You are a strong person, the type this country made, and desperately needs. You are appreciated, respected and loved even if you don’t feel it right now.You may be suffering from burn out. We have all been there. Some can take a break and return, some cannot. In whatever way things turn out for you, don't ever feel bad. You have done an admirable, caring thing for as long as you could. Take pride in that.

I’ve been with my parents since 2006 and have taken 2 breaks from caring for them. Do you think you are completely finished, or do you need a break and then be able to come back to caring for her? It may be time to find a residential facility for her. But is that what you really want? Maybe some respite care for your Mom so you can step back and make an objective decision on what steps you want to take next. Is your mom cognizant or is her mind gone? Is she able to participate in the decision making process?

Bless you, you will be in my prayers.

Sue
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I have been at it for a while too and I was so close to losing it, I was a walking zombie, stayed in the house, no help at all, and mom had a stroke and I am needing double knee replacement and its been nuts but God blessed me with an understanding wife and we do the best we can, pray and try and keep your sanity, if you can get caregiver help please do and get out and breath, if not for my wife and the agencies I wouldn't be here right now
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No way do I think after 7 years finally saying something is whining. I've been at it for 3 years. Mom has AD and my brother is disabled due to a motorcycle accident 40 years ago. He suffers from a major head injury. So, I have 2 people who can't remember from one minute to the next. My brother is only able to put 3 to 5 words together. Most of the time I don't know what he's trying to tell me. Then there's Mom who rambles on forever making no sense at all.

Mom is becoming more difficult. She's more delusional and I think she hallucinates. She refuses to bathe or change her clothes and becomes violent if I attempt to get her to take a shower or change clothing.

She becomes angry over imagined things, forgets my brother is disabled and doesn't understand why he won't move as fast as she would like. She forgets his ability to speak is almost non existent and gets very po'd if he doesn't speak to her.

I'm afraid my brother is losing whatever ability he has to walk. Before Mom's diagnosis, he was much more mobile. Getting him to do any sort of exercise is a struggle. He's 6'3" and I'm a good foot shorter.

I've given up on what little family we do have. I don't expect them to help, as the nearest family is 100 miles away. I would at least like to receive a phone call or email. But, nothing. Even my friends no longer bother. I haven't seen anybody, other than my brother and mom in about a year.

From what I have read on this site, it's seems almost the norm that family and friends walk away, saying...."Whew! I dodged that bullet!"

Sometimes I think I should climb to the roof of the house, jump off head first, then all 3 of us will be living in the same La La Land. lol

So, whining? Not a chance.
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i've been at it for 16 yrs first 8 i worked and last 8 caregiving has become my full-time job if you are a caregiver you just have to hang tough i'm glad i went to cuba last month a well deserved respite you know, just do the best you can with what you've got thats all anybody can ask for fuck your relatives they just get in the way i'm going to a german festival next weekend itll get me out of the house for a few hours things are winding down around here not as rambunctious as they used to be moms been prescribed meds that i heard are used for depression and or alzheimers i dont think im equipped to handle alzheimers but we'll see enjoy your sunday everybody i need to get to mass more often went to palm sunday service in havana last month that was nice it was given in spanish but who cares we know what it was about anyway best :-) wayne
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Seven years? I've lost it after 4 months of intense caregiving! My husband hasn't been good for a year, but the last 4 months have been a nightmare of psychosis, more confusion, agitation, weakness, etc. I won't last 7 years. You are to be commended! God bless you! and get help...call the agencies mentioned, call an elder attorney, attend a support group...do what you must to save your sanity and your health. You won't be any use to anyone if you get sick. Do it! Save yourself!
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I have been cooped up all winter and I am a very outside and going person. Staying inside and not going anywhere without feeling guilty or Mom aggrevating my husband as to where I am constantly is killing me. Our daughter is having marital problems with a cheating husband and I went with her to the divorce lawyer and she lit my husband like a house on fire, "have your seen or talked to your wife, she's been gone all day". It wasn't true at all, and thank heavens he knew it. Everyone is getting out and doing things and my husband and I have to go individually to do what we need and I am so down in the dumps. Also, friends I talked to and had during the winter aren't there now :( . It's always, oh we need to do lunch, or go get a pedicure or just get out and now there is no one there, they are doing it with someone else. I'm trying to figure out how not to lose my husband, because a person can only put up with so much. He has been great, but you never know when that could change. I am ready to wring my son-in-law's neck for what he is doing to our family also. How much can a person take? Seems like my prayers just aren't being heard or something. Thanks for listening!
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In caregiving, it's so easy to become so fixated on everyone else's needs that we virtually disappear. Three years of caregiving seems like a lifetime, and it becomes harder and harder to remember who we used to be. Maybe because we're numbly going through the motions. Days are carbon copies, or just one eternal nightmare that we can't wake up from.

If you can afford it, throw Mom a birthday party as a lure to bring all those ghostly siblings together. Then strike. ... If you don't honk your own horn no one's going to know you're coming. Take the opportunity to ask for help, but make sure Mom's not watching. Good luck my friend.
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Yes, I totally hear and agree w/ most of the above. Chloesgram, I'm in the same boat with not being able to get out of my Mom's sight. It's one of the things about this duty that drives me the craziest! Suffocation! Shadowing!! I love my Mom dearly but I can't get away. Well, CORRECTION, I have finally taken much needed steps to get away, and you have to as well, Used2bhappy, and everyone else. It's difficult to get away, because no one else wants the job of "helping out." AND, it's expensive!! Unless they're family members offering to help once in awhile (which almost NEVER happens) they all charge $15.00 or more an hour. That certainly adds up fast. But, other than lose our sanity, there doesn't seem to be another way out. I just got my two siblings to agree to come and spend three days w/ my Mom so my husband and I can get a break. The amount of work I have to do even to get things "set-up" for that get away is unreal. But, I think it's worth it. This is a tough row to hoe, but someone's gotta do it. :-/ And I truly do love my Mom as she was a fantastic Mom to me. That makes a difference, I realize. Cudos to you, Used2bhappy. Whine away, because you deserve to vent, and you are totally understood here on this site!!
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You certainly aren't alone. I started with both parents back in 2005. Now it's just Mom, and I am an only child. I know it's hard! I have left home only once, and that was for just two days. Other than that, I am tethered to my Mom. I've managed to get used to it. I convince myself that I don't want Mom to be gone, so I simply have to put up with it. Whiner, no you are not! You are simply expressing the feelings that many of us here have!
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As Annnie stated, don't expect help from family. But there is nothing wrong in asking for it! Guilt may win over. But often siblings think that the caregiver is benefitting somehow from taking care of the parents.regardless of whether or not that is the case.
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Sounds like you need respite ASAP! Just remember you are working on your wings and your siblings will get their just rewards in the end. Get some counseling and/or consider placing her in a facility (you did not mention at what stage your mother has dementia). At some point in time you will not be able to manage her daily living requirements unless you are a nurse, but even then she may be too heavy to handle. Try researching all your options for mother's care other than you. Don't kill yourself over this.
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You are certainly NOT a whiner. I so much admire you. I have been at it nearly 3 years and it has already taken it's toll on me healthwise, my sanity, my financial situation is a disaster because I need to get and job and can't get out to work, and I am setting here crying as I type this comment. I pray and pray and pray and it's not getting any better. I have NO ONE, Only my husband, when he gets home from work. I am scared to death that I am going to lose my marriage, but he has stood by me through thick and thin. I did the same for him, but his parents illness didn't last 3 years and they were in their own home. I am getting our insurance book out today to see if it covers counseling or therapy. I canNOT get out of her sight. It's no wonder she has me TOTALLY confused, because her doctor is too! I am here to listen to anything you want to talk about, just know that. Know you are not alone. I know this does not help like it would to be in person, and it's only on the computer, but I do care and will say a prayer for you. Take care!
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It only gets harder.............. put yourself higher up on the list or you will not be able to continue - you will crash and burn - if you haven't already.
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YOU must not do this alone ! ! It will take you down. Get outside help. I am a caregiver and I hear your story over and over. If family won't help, ask friendsand or volunteer groups. Call Area on Agingin your area. Don't stop until you find help. Plz remember Caregivers are a "Special Breed" not everyone can handle it. But also some people are
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