You need to take care of you- BS!

I think they are just trying to be kind. And maybe they might be worried about you. Caregiving is stressful, your life changes in an instant. Some people have a very difficult time with this. Others not so much, just depends on the person and the situation.

Right on.

My experience: I/'we" finally had 4 hours of paid caregivers 6 days a week. Sometimes, I didn't WANT to go out; I just wanted to be alone, in my upstairs 'suite' [bathroom, den, bedroom]. The pro caregivers, bless them, would bug me to 'go out!!!--you've got the chance now!'. So, I avoided THEM and hid out upstairs to not have to 'argue' with them about why I wanted to stay in [like 'regular' folks can do without a second thought].

Please don't write this forum off because of a few misunderstandings or misguided responses (or the nasties, we do get them - I see at least one comment that I certainly didn't appreciate, for me or you, but haven't read them all! I did read through most of the first page of responses and most were at least in agreement with you!)

It is common for people (even family members) to give the 'lip service.' 'Take care of yourself.' 'Call if you need anything.' 'Have a nice day.' 'Hi, how are you?' The one I get sometimes is to relish in the sound of her voice as you will miss it when it is gone.... In my case, not so much. I have my reasons. I don't hate her or wish her ill, just not a lot of lovey dovey in our relationship. I manage everything for her and see to it that she is safe, cared for and has what she needs, including some visits from me (OB not local and probably wouldn't visit if he was, YB lives on some other planet I think!)

These are merely things we learn to say, but most people don't generally follow through. They are merely platitudes - "remarks or statements, especially one with a moral content, that has been used too often to be interesting or thoughtful." They are not helpful, and certainly can make one grit their teeth!! I love those who said they would gladly throttle the next person who suggests these things! Ever see this oldie but goodie?

"STRESS: The confusion created when one's mind overrides the body's desire to choke the living sh*t out of some assh*le who desperately needs it." Been there...

Unless someone has been down this wonderful (can be other medical, but is especially true for any kind of dementia) road, they generally have NO clue and this is why you get these statements. It is easy to say, but does nothing to help. Even those who have had some 'experience' can fall into the lip service trap.

I do not provide the hands-on care for our mother (moved from her condo straight to MC), however most EVERYTHING (99.9%) else landed on my plate, despite having 2 brothers, one who is 10 years younger! Organize the clean out, clean up and repairs for her condo (1.5 years, mostly me!), arranging to become rep payee for her SS AND pension (thankfully we already had POA and were on her primary account, but the pension took over a year!), setting up the trust (long delay and aggravation from YB who questioned everything, but never posed them to the right person, only me!), forward all her bills to me (even before the move) and take over all finances, manage and transport to all medical and dental visits before and after the move, manage her Rx orders and OTC supplies, arrange for in-home care (refused after a few weeks), getting the car taken away/sold, etc. During the worst of all this, when I told OB I needed help and couldn't keep doing all this, he just bellowed at me to "Give it up!" Yeah... and....????

While you didn't ask for help, just maybe some understanding or commiseration, unlike those who gave the lip service but gave no useful advice or help, I will ask is your mother's income low enough to qualify for Medicaid? Medicaid CAN provide in-home assistance. It doesn't mean mom has to move to some kind of facility. We haven't used it, but even if they can only provide a few hours of assistance (or even just a CNA/babysitter) each day, that gives you a few hours to "breathe." Just a suggestion... Don't know if mom qualifies, but you do imply there isn't enough money to go around... It might be worth looking into.

I feel the need to add to my previous comment. I'm sitting on the other side of this situation. I'm the one who offers to help my brother and sister-in-law with my mother's care. ALL offers of help have been rejected. It seems like if they accept help, they are admitting they can't do the job themselves. Well, WHO can do everything??? As a result, by brother is in deep clinical depression and their marriage is extremely stressed. I offer to do things that I am capable of - arrange appointments, fill out government forms and submit them, research day care resources, arrange for home delivery of groceries and medicine, and much more -- all offers are rejected with remarks such as "Oh, I can do that myself." Sp, again, be specific when you want help, and don;t reject any offers.

You are not alone. I imagine it is very frustrating to live this way. My experience has been this: my mother has emotionally abused me for years. We didn't live together but I would do things for her while she still lived in her own home. Finally, I started leaving her house and started hanging up the phone when she became verbally and emotionally abusive. After many years of trying to help her, even just visiting, I gave up rather than have a heart attack or stroke. She began living with my brother and his wife about 8 months ago. There was NO planning, NO discussion, just an announcement by my brother. Now, he's in a deep depression, and acts like no one will help him. My mother continues to say that she had no help. The truth is that I (and others) have offered to help with various things but the offers of help have been rejected, ignored, or laughed at. Lots of sarcasm and sometimes nasty comments. Specific offers of help have been rejected. So, I asked what types of help are needed. This results in sarcastic "snickers" and sometimes comments such as " you know what I need". Even IF I could read their minds, I'm sure (at this pint) that offers of help would be rejected. My point here is this: When you need help, be specific and do ASK someone to provide that help. Even if someone offers to do something that seems small or little, TAKE the help. Everything adds up. Every bit does help. Someone else can drive them to the doctor. Someone else can take them out to lunch. Someone else can take them shopping. Someone else really can come stay with them so you can go out, or even have time to yourself at home. If no one seems willing to do those things, then specifically ask for money when they offer help but don;t know what they're willing to do. Money can pay for a sitter or driver, etc. My situation became one of help from a distance. I take care of my mother's financial accounts, pay her bills, make appointments, order refills for her medicines, talk to the doctor/nurses by phone. All of this frees up my brother's time and relieves some stress. He is still very bad about accepting any type of help, and doesn't recognize what I do as "help". I have found that if I ask for specific help, I usually get it. When I was going through some brutal cancer treatments, I asked for help in driving me to and from the hospital, cleaning my house, and grocery shopping. I was amazed at how many people provided that help. We coordinated who would drive me to and from the hospital, and that went on for six weeks. some people brought food already cooked. My brother went grocery shopping once - and even that one time relieved a lot of stress. Give yourself a break by asking for something specific. It doesn't have to be a family member.

YUP. JUST LIKE "LET ME KNOW IF CAN DO ANYTHING". 'DO YOU NEED ANYTHING" (YEAH A $10 BILL WOULD BE NICE/USEFUL/HELPFUL IF YOU WANT TO 'DO SOMETHING' FOR ME/US. DOES MAKE YOU BITTER IF YOU FORGET TO BE THANKFUL FOR THE MEDICAL FIELD , THE MOST HELPFUL PEOPL EON EARTH'.

Now that I've vented about my sisters :), I wanted to come back and make practical suggestions, Check into your state's Family Caregiver Support Program and Medicaid Self-Directed Services. If your LO qualifies for Medicaid, you may be able to be paid for caregiving, which will enable you to pay for respite care and other expenses. I plan to check into it if mom doesn't qualify for the Assisted Living help. I am blessed to be part of a wonderful women's Bible study group and have 3 ladies who have very sweetly offered to help. I just need to put aside my pride and take them up on it! I pray that you will also find a group like that.

That's how most people are, period. I've seen it throughout my life. It just gets ratcheted up so much more when you are the one that is sick or when you are caring for one or more older adults. Often, we just go into "survival mode" and can't seem to get out from under the pressure. I found an ally in a clinical nurse/social worker from mom and dad's county services. She called me to discuss the possibility of discharging dad from rehab (after a hospitalization, after a long rehab, after a hospitalization....) I could feel the panic rising in me and found myself admitting to her that I was finding it hard to breathe. I'm not a diva; I just at that moment reached my limit and had the strength to admit it. She heard me and recommended that my dad stay in long term care. I was also helping my mother who was frail and suffered short term memory issues. As much as I would have liked dad to return to his and mom's home, it just wasn't safe or realistic. As far as friends and family are concerned you can inform and delegate, but you can't make people care. In my case, my brother lived in the midwest (I am in Mass.) and my sister who lived a little over an hour away did absolutely nothing. No phone calls, get well cards, visits....nothing. Now mom and dad have passed and I was taking care of a little lingering paperwork that will benefit said siblings and my sister thanked me now for my hard work, meaning the paperwork.....Are you kidding me? It is so hard, this part of life, but know that even if you feel let down my certain people in your life, there are usually people out there whether it's their job or their interest to care. Find them. I did. There was Linda the county nurse, Sara who worked in the business office at the hospital, Tina the town senior outreach, Jon the Veteran's agent, Barbara, Inez, Michele, and Thelma the home health aides, Steven who was dad's best roommate in long-term care, Maureen the hospice nurse and my husband and daughter to name a few. I worked so hard for the last seven years, and at times felt so alone in this struggle. But as I write this answer to your question, I realized that there were so many people who did help mom and dad, therefore me. I don't know if your loved one can qualify for any assistance, either free or pro-rated, but try to reach out to every service and organization that you can to find your new, improved family of caregivers.

YES! My mom has lived with me for 10 years. I have 2 sisters, twins, who are co-dependent. One will occasionally take mom for a few days when it's convenient for her. I've applied for Medicaid Assisted Living, which I'm told will take 6 to 9 months. In the meantime, my sisters said - We'll help as much as we can until she's approved., just let us know when you need a break..... Ha! When I DO ask (which i dread doing) they're so wrapped up in each others lives, they don't have time for mom. Never call to check on her, but will call to tell me how they went out and had lunch, had their nails done and went shopping. What am I supposed to do with that?! I don't want to be bitter, but........ I'm so thankful for a place to come vent and see that I'm not alone in this.

I feel your pain. Yes, I know I need to take care of myself and I'm also aware of the caregiver statistics that many die before the patient. So, I don't need to be reminded of that to add to my stress which people tell me often.

As you say, OotiFairy, no one volunteers so I can take time for me. I'm sorry but knowing that the clock is ticking and how much I'm going to owe a paid sitter when I return stresses me so, that the time isn't that enjoyable. Maybe it shouldn't, but how do you stop that? If I take time, its usually a have to situation that also is stressful in addition to finding someone to stay.

Once someone ask me to let them know if they could help in any way. I said well the only way really is to take him for awhile. They never ask again nor do they even drop in to see him.

So, I have no words of wisdom about getting anyone to help. I also get tired of hearing how I'm the only one he's comfortable being around. First of all, not true but if it helps your conscience, I guess it's good for something, just not me.

So in conclusion, I think if you're old and bitter, then I'm right there with you!!!

SO agree, although I hear it far less frequently than I read it and I am getting so sick of it.

And then I am fresh off the experience of being in a respite program that was supposed to help and really made for more stress and work and damages. It doesn't help if I have to supervise someone who lacks common sense and any initiative or creates damages that are left to be in my face daily. (I know, I will contact the owner of the company, but when I have the time and energy to avoid using some of the naughty words I might be inclined to use:-)

I think it is less getting older and bitter and more being burned out and frustrated. Guessing we need to lower our expectations which I find an immense challenge. Plus policies in our beloved country need to change and offer more compensation/support financially so we can afford good care, and professional caregivers must go through a training program and prove they are professional.

PS...the worst is when it comes from professionals at support groups who think they know it all.

Yes, it does bug me to hear the platitudes & take care of yourself stuff from those who really have no clue.
However, there are people who really want to help, but they need a tangible choice.
Next time someone tells you to take care of yourself, you say "Awesome idea! I have a 2 (3,4,....) hour block of time on Tuesday or (whatever day, etc) I am writing your name in. Come a few minutes early & I'll show you where the supplies are." Or, "You are so right! I have two nights we need meals. I will write you in for Wednesday or Saturday." Those who want to help will get on board. The others will backpedal so hard they will get whiplash. Either way you have put your need out there in a tangible way.

I can't answer if "you're just getting old and bitter" - but I can answer the rest.

People will say, "call me if you need help...." but that's because they don't expect you to call. And if you do, it is never convenient. That's when you hear, "gee, if I'd only known, I made other plans for ........." I adopted an attitude of, "We're Managing" when people would ask how I'm doing. And we did.

And most would tell me to put my DH into a nursing home and that was just not an option. Even his own son said that. This is the same son who said, "if you need us, call us, we're only a few hours away." So DH's last couple of weeks I did call and ask for help. His reply? "I'll be there in 2 weeks." DH died 2 weeks later. The son only got to say hello before DH went into the "death coma" and he passed the next evening.

I was blessed that I had a sister to do my perishable shopping for me and the rest I just ordered online and had it shipped to me. The last year, this same sister's DH 'went down' with a terminal illness and we both still managed without outside help. The only times I actually called someone was the last 6 months when I could no longer pick up my dear sweet husband if he fell, and then I called on my neighbors. I had to fight to get a Hoyer Lift and only had it for the last couple of weeks.

So - NO - you're not alone, old and bitter - I'm pretty sure we've all heard the offers you get and are all told to take care of ourselves. I decided I had the rest of my life to take care of me, but DH needed me the last few years and I was there for him and am thankful I was blessed to be able to care for him. He was 30 years older than me and had cared for his first wife for several years. I was there to take care of him.

Now, I am taking care of me.

You sound burnt out. Seems like your support system is too small. People who make the comments you listed:
are they friends?
are they family?
are they from your community of faith?
are they neighbors?

Any of these can - and will - help if you ask. Make a list of ways people can help you:

sit with _______ for ____ hours on _______ so you can go shopping, get your hair or nails done, have your own doctor/dental appointment, go out with friends without caretaking burden...

inviting your LO for a meal - without you

staying with your LO for a weekend so you can have a mini vacation.

I think we need to find a way to educate the public on sensitive ways to help others dealing with heath issues ( their own or their family members). It seems to me that many people really are concerned about caregivers taking care of themselves ( getting proper rest and relaxation, eating well, de-stressing, etc). Instead of getting angry, hurt or frustrated, you can ask the person that says you need to take care of yourself if they really mean that statement. And if they say "yes" you can say "I really appreciate your kindness and we are in agreement". "I do need to take care of myself". And this is how our mutual goal can be accomplished, then give them a typed sheet of paper listing the help you need in order to take care of yourself. Or just tell them directly how they can help you achieve the goal.

Another point, something I have learned, is don't ask people what help they need, as many people are reluctant to tell you. Observe their situation and take it from that vantage point. Perhaps their house is a mess because they are so tired and unable to do the physical work themselves. You can give them a gift of hiring a maid service. Call them first to get their OK on that. Or if they can't get to the grocery store, arrange it so they can pick the food they want and have it delivered to their house. And/or their are many fine companies that prepare foods, this seems to be a great gift for the exhausted care-giver. Do they need help with yard work? If you can do it for them, do it. If not hire someone to take care of their yard. Another nice gift, is to give the caregiver gift certificates for a message and pay for someone to sit with the patient while the CG gets a massage. Make sure this is a gift the caregiver would enjoy.

As caregivers, I think we have to help people, help us.

You are not alone. Another comment that really annoys me is, "If there's anything I can do, let me know." Like they aren't going to offer, but if I beg...

One thing I've found out in my caregiving journey: You can't wait for an offer of assistance. You have to ask for it. That was a very hard thing for me to do, as I've always been an independent cuss - but the time came when I had to put my pride in my pocket and ask for help. As the years have dragged on, I'm doing it more and more, and I found that it gets easier as time goes by.

It's also an opportunity to find out who your real friends are... they're the ones who might be hesitant to offer, but who will gladly step up to the plate once they're asked. Hopefully you have one or two of those. Thankfully, I do - and it's my ex-husband's wife! She's a very kind woman, and helps me out whenever she can, which only goes to prove that sometimes help comes from the most unexpected quarter.

I'm with you on the frustration of having your only "alone" time consumed with errands or tasks that you have to dash through at breakneck speed. I have to carefully time and choreograph everything so that it fits into Mom's nap time. Exhaustive preplanning of a simple shopping trip is a chore in and of itself (and who among us needs another one of those?), and I often return home to hear her call bell ringing before I can even lay down my purse, let alone get the bags out of the car.

It's natural to feel "old and bitter" - I get that way quite frequently. I usually handle it by allowing myself a pity party for a little while, but then I get back up and slog on. I have to. My only alternative is a nervous breakdown, and I don't want to go there.

I hope you find someone you can trust to give you a hand. But you'll have to make the first move, and see where it goes from there.

I’m sorry I finished nine years six months ago- of the caregiving. I get what u feel and feel your pain. Now that my husband passed I’m six months along—- began a hobby I use to love and now a job. Just had a good cry as it hits you every so often

I usually hear about "taking care of oneself" from people using it as an excuse not do too much for others themselves.

I hear "Take Care Of Yourself" from friends, family and Doctors and to that comment, I recently said to our Minister HOW?
I think people mean well but don't know what else to say. I am told many times the care giver dies first.
99.9% of the people offer no help and to bring in a stranger and pay adds to the stress. Thank God my husband is still so I can take him with me every where. We have 43 years of serious health problems and 10 plus years of Alzhimers (plus my own serious healthy history) and we are loosing every day. I am a Nurse so I have seen that he has had the best of medical and nursing care. I am tired, afraid, bitter and want relief and know that God has a plan but I am afraid of the future and would like to think that I will have some health and time when this is over. When he naps or goes to bed I am so glad but there is not much relief because I have to do everything that life demands to keep it all going. The most I can do is know there are a few people praying and I say, God Help"! I have checked into stress counseling without success and realize that is not the answer so why bother because it is my problem. Things can and do change minuet to minuet and then there is a new problem to solve and a decision to make. This keeping a constant eye on some one is like never having a break from a toddler. I know that it is going to get worse and my mind is always working on my (if I need or am forced) next" plan of action." Thing is.. no one will ever care for our loved ones like we do but it is killing us! Our Elder Law Attorney has been helpful but like everything "no free".

Sorry for all the suffering for everyone.

❤️ You are not alone my friend.

You are 100% correct! I haven't had a vacation in 13 years as I take care of my mother and her brother who moved in with me. I don't go anywhere after 4pm or 6pm when the weekly caregiver leaves and I am here 90 hours a week with both of them while the caregiver is here 30 hours a week. So I can't stay overnight anywhere, go to any night time events with friends (whom I rarely see) and my life is basically not my own. I do have the comfort of knowing that my relatives are not being abused in a nursing home though. So many folks have told me to put them in a home, but you have to have at least $100,000.00 for them to make it through a year and then most homes don't have medicaid beds... so they get shipped to a facility that is most likely not so attentive and the quality of life is not great. Yes, there is hospice but living in the most densely populated area in the U.S. makes it hard to come by. I hear you, everyone thinks it is so easy to dump the family, but I am like you, someone who cares and finds it hard to heave ho... kick grandma to the curb.

Im sorry to see some if the negativity toward you here. I've heard those words so many times. Yet no one offers to help. I've managed to get a paid caregiver 4 hours a week. I'm blessed that my husband can still go with me for short errands. Ny husband is a Presbyterian minister but never once did a church member offer to help. We recently moved to 55 plus community. I was so blessed last week when a new neighbor called she had signed me up for a red hat meeting. Not necessarily my thing. And her husband would stay with my husband during event. I cried with joy. Praying someday your angel will appear aldi

I feel a lot of bitterness, but I only have one mom for all eternity. The worst thing about caregiving is that you sacrificed your life for another's care...and they are going to die on you and leave you by yourself..to fend for yourself. There will be no pity or mercy in this life as bills keep on coming in. That is going to be exceptionally difficult if you are middle aged and out of the workforce. For years. Let me assure you age discrimination is real and you really are going to have to fight to get a job. So no time to really grieve..which adds to the pure cruelty of life.

You DO need to make plans for your life; it is YOUR life. What are you going to do when your loved one (LO) dies? Social support is very important. My best friend watches my mom so I can work a few hours a week. I also acquired my bachelor's degree because I stay home a lot so I made straight As--thereby winning scholarships so my 4-year degree was entirely free including books. I'm not a smart person by any means, but I had to work my booty off. There are options even as a full-time caregiver.

When your loved ones dies: What next? Make plans. Also make sure you got your ducks in a row. This includes estate planning, POA, and prepaid funeral or cremation. Cremation is the cheapest means to dispose of a body. I never liked burial since the preservative (formaldehyde) breaks down in a few months and the corpse just rots away anyway. Prepaid funerals will save you a lot of money and the undertake won't gouge you.

If a person is really strapped for money, one can donate the body to science. Transportation is free; once the tissue samples are collected and otherwise used for teaching purposes, the cremation is free, along with two free death certificates. Just an option to explore if money is a problem.

I'm sorry but I cannot help but speak up. To the OP, I am sorry for some of the comments you've endured. This forum has helped me in many ways. My mom passed 6 months ago and years 'BS' led to lasting health damage to me as I struggle to rebuild my life at middle age. Health 'care' in the US is ridiculous and will only get worse. For the posters telling you that you are bitter and to 'get off the pity pot' and the rest, I am thankful I've the restraint not to respond directly to them. All I can say is: hold on, try to survive and know that it won't last forever.

You are not old and bitter. You are right in the money. The next time someone says that to you come right back with, okay when can you come give me time to do that? If you wait for someone to offer you will wait forever. I know people say they want to help, but until they walk in our shoes, they will never understand how hard it is and how much we sacrifice in order to care for another adult. Especially if it’s family. Good Luck to you and please do what you have to do to get a break. You can’t give 100% if you are running on 50%.

Oh my YES! "Take care of yourself." When I hear that, it makes me feel guilty. I think I'm not taking care of myself and if I go under, who can help? I take care of my husband who has a bad chronic pain disease...we are waiting for a second diagnosis from Mayo or Cleveland Clinic, my 90 year old mother with Alzheimer's (She still can dress herself, brush her teeth, etc. Thankfully!) And a grown son recovering from a psychotic event.
I had I never thought of this before for myself, but I will ask that person suggesting that I take care of myself, if they can come over so I can have some time off. I do have a wonderful paid helper that I hired a couple of weeks ago, but we can afford for her to come for a few hours a couple of times a week. And I stay as we work together a lot to get caught up on laundry, dishes, cooking, etc. Again, the take away is turn the take care of yourself back on the person suggesting this.

We recommend caring for yourself because you have to: WE’VE BEEN THERE!! Apologize to your fellow BSers and take note. Do what you can and seek assistance for the rest. Easier said than done? Of course. Go ahead & whine, but without turning on the rest of us. And TAKE CARE OF YOURSELF!!

When someone says to you that you need time away then say to them."Your'e right. When can you come sit so I can?
I didn't get those comments when I became my mom's caregiver after her stroke,but I would get family members who would offer unsolicited advice.Most would say,Well,if you have her do this or she should be further along So and so had a stroke and they do etc.My first instinct was to say It's easy for you to give advice but how about you come for a few hours and help.Unless you've walked a mile in my shoes.Keep your comments or advice to yourself.You do need some time away occasionally.Thankfully,I had my daughter or an aide that allowed me to recharge when needed.If there is a friend,neighbor,church member or even family member you trust.Take the time for you.