You need to take care of you- BS!

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...

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 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 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.

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.

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.

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!!!

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.

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.

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.

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'.

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.

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.

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.

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].

Right on.

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.

Hi OotiFairy, I’m not sure if you are still reading the answers to your post, but here is a slightly different comment. You say that you ‘can get a stranger to come in – a volunteer – if I plan ahead’.

Everyone is a stranger until you get to know them. If a volunteer is part of an organisation, they have probably been checked out in much the same way as a ‘bonded’ worker from a care business. And the ‘bond’ may guarantee financial compensation for problems, not that the problems can’t happen. A volunteer may not be qualified, but if you need company for your LO’s safety while you are away, you may not need a qualification – certainly not a nurse.

This hits a nerve with me, because I had a demanding daughter who was angry with me for not providing on-demand babysitting for her 3 year old, but refused to find out about the local occasional care service because it would mean ‘leaving her with strangers’. No, she wouldn’t try a visit while she stayed and got to know the way it worked!

You are lucky if you have this option, so see if you can make it work for you. Spending time with the volunteer, and then making the first separation short, may help to put your mind at rest. Best wishes, Margaret

Old and bitter? Probably more like tired and burned out. People say "take care of yourself" to sound supportive without actually getting involved. That's all they've got to offer so don't be too disappointed in them.

If you are the only available care taker, that is your life right now. Take satisfaction at doing your best at the things you are able to do.

You took my late night thoughts right out of my mind!!!!! 😄😄😄 My circle is Walmart and two grocery stores. I'm afraid to leave my mom alone so I rush my errands.....😕😕😕😕😕

Maybe you just hit upon something. I'm wondering if , like the grieving groups I'm now going thru, is there a new thing whereas we who HAVE been where you are- who might live near enough to step in and give you a few hours to go to grocery or your own MD, or get your nails done, sorry, there are men in this picture too, I'd be willing to step in and be your pretend family to help out.

Yes, ootifairy, I know exactly how you feel! You don't sound angry -- you understand the reality of the life you face and are realistic about the empty words from others. I, too, am very tired of being told this....

Sone posters will state the facts and that is if you don't take care of yourself, you'll be good to no one.

Davenport- I so totally get it. Just having some time to put your feet up and rest, maybe lose yourself in a tv show or movie or something.

When the CNA is here, I am doing all the stuff I that I don't get done, like vacuuming, etc. She's not here very long so I don't get my chunk of private time till evening (if all goes well and there aren't any incontinence accidents to handle). DH isn't ambulatory, so I do a ton of transfers every day and my body hurts. I am thankful at the end of the day that I can finally rest a bit.

I believe people mean well and probably see us caregivers need our own time. But with all their good intentions they have no idea. I am giving myself space tonight. My hubby left for a business trip leaving me with his 85 year old dad who lives with us. He is NOT easy. So after a full work day I told him to make sure he eats something for dinner ( hint, I’m not cooking, serving, and cleaning up after you) because I’m going out. I just dread being alone with him. He will wNt to talk my ear off about the most mundane things and things I’ve heard a million times before or worse sit and watch one of his old movies on the DVD player. So I’m eating alone be in a nice little restaurant enjoying my pasta and glass of wine and playing on my iPad. I am getting relaxed. The FIL got out today with the woman he has that takes him out for a few hours once a week. I find my time when I can, and you should too. Trust me who is a caregiver. It is painful and you do need to make time for yourself. I don’t get bitter about people’s comments I get bitter when I feel taken advantage of and at the same time frustrated because the elderly FIL probably has no idea how he is. Good luck to you.

I honestly thought I would be able to make time for myself. Ha! What was I thinking. I have to squeeze in getting to the bathroom some horrible days.

And I use the grocery store as a getaway for a little while so don’t feel bad about Walmart. Such fun.

I totally understand as I get the same comments. I work too and a lot of times if I have any free time I want to nap. I think people mean well but they don’t walk in our shoes. I too get irritated especially when the same people say this and don’t offer to help. I won’t get help from any agency that isn’t bonded. I haven’t found any help yet.

I walked in your shoes, having had to leave my home and state and move in with my mother in another state for a long period of time.

For those who can manage trips to Wal-Mart or the grocery store, appreciate even that break. Some situations become intense and critical, and it is not possible for the care taker to leave the house at all. When this becomes the situation, you will need to arrange to have food and medicine delivered or arrange paid help to take a shift while you do the errands. If your LO is still active but needs supervision, look for Adult Day Care programs in your area.

Good luck to all

Yep, I get you.

Told by Younger Sister (YS) that I should take a holiday. Me: come visit, stay in my home, borrow my car, mind our disabled relative? Her: No no. Taking a winter holiday - not convenient to come now in summer.

So did the research, looked into funding, toured facilities & packed the bags. Dis relative off to respite care. I did take a (short) holiday.

What? YS now travelling to visit? YS: she must be SO sad in respite care, I'm coming to go cheer her up. For 2 days (then adding a beach trip for 3 days).

Right.

Then I found my way here, to this forum. Started learning about boundaries. Started to see I wasn't alone, many others feel the same. Many *teflon* siblings out there - nothing sticks to them!!!

Vent away Ooti ((hugs))