Someone you know has recently taken on caregiving responsibilities. You want to show your support, but you aren’t sure what to say? Here are some tips on what not to say and suggestions on how to be supportive.
I hear a lot of these comments from people who probably should know better; I attribute it to them wanting to help, but not having the correct vocabulary, similar to when someone passes away. They want to commiserate, show empathy and affection, but don’t understand what to say or do. It’s okay. I’m far from perfect, too, and have said dumber things in my life. We live and learn and do the best we can. – Dean P.
What not to say
“The worst things I heard while care giving were, ‘Everything happens for a reason and God doesn’t give us more than we can handle’…also, ‘It won’t last forever’, no, it won’t but, that means my mom will have died and that’s not really a comfort.” – Odilia S.
I hate it when people say “I don’t know how you do it.” I suppose that’s meant to be some kind of compliment, but what I hear is “I sure wouldn’t want to deal with what you have to.” – DeDee M.
Don’t tell a caregiver with a sibling that will not lift a finger to help, visit or call his mother that the sibling should be let off the hook because “he had a difficult upbringing.” Don’t these people realize you grew up in the same house with the same screwed up parents? – Debra H.S.
Any comment the begins with “just be glad…” – Tammy H.H.
“You’re just a caregiver, you don’t have a real job?” – Debra R.
I hate it when people ask me what I do all day. I am a caregiver and it isn’t easy! – Kim P.
People ask some very personal questions. I don’t know when it became okay to talk about my husband’s hygiene and sex life, just because you’re curious. I just roll my eyes when people inquire. – Mandy L.
Don’t tell them not to worry because their loved one won’t be around forever. – Elizabeth M.F.
My pet peeve is when people comment, “I know just how you feel!” Reality is you can’t possibly know how I feel unless you live the EXACT same life I have. Even if you are an only child caring for your mom with TBI/Dementia and you pulled up stakes to take care of things…you really don’t know just how I feel. – Cameron G.
“You’re not working outside the home, so you have PLENTY of time! I’m just too busy ’cause I’m single and have to do everything for myself.” – Jeannette B.L.
“[People said] my mom was selfish for continuing to live on so I can continue to take care of her. That was the most hurtful thing I had ever heard. I cry and my heart breaks every day. My mom passed from breast cancer this past Feb. I took care of her until her last breath. I would do it over and over.” – Helene B.
So, what should you say?
Words are cheap…go over and help…drop by with a treat…vacuum the living room…or sit with loved one..so caregiver can get out…the thing I prefer to hear…is from someone in same position..saying…I know it’s hard…because…it validates it somehow…the most helpful thing said to me at the beginning of this journey came from my best friend..who also cares for her mom with dementia…I was bawling from the range of emotions I was feeling…and feeling lost…she said…so you don’t recognize yourself…eh?…I was so relieved…that she had those feelings as well…I so needed that emotional support…no I didn’t recognize myself…and neither did she…and it was okay… – Beth S.
There’s a saying in Spanish (Quieres se murió. Toma lo mató.) that, translated, basically says: ‘Don’t ask, just do.’ Don’t ask me to call you if I need a break. Ask me which day this week you can relieve me. – Maya S.
Tembi has other suggestions for how to make a caregiver’s day over at The Kitchen Widow.
Here’s one that I just loved: You know you don’t HAVE to do this. That statement told me, this is YOUR choice, so don’t expect any help. I didn’t expect much, but sure was sad to see how hurt my father in law was over visits that were few and far between.
I agree. I took care of both my parents. And I do it all again. Some of my favorite moments was with my mom, when she was in the nursing home. I was there almost everyday.
So sorry to hear you lost your Mom Patrica Timpanelli Rabner. It will be hard to keep in mind, but know that you did a great job with your Mom. It is sad when siblings are assholes through everything instead of sticking together with the ones that are truly doing all the work. It sounds like you did all good things for your Mom, with no regrets. 🙂
Call the funeral home and ask them to request the will to be followed. Maybe they can make sure done things are done how your parents wanted them done. Check with your state laws… Some people have saved parents homes from being taken by the county to cover the cost of nursing home bills etc. or from greedy relatives.
The loop hole that I heard about is if you have lived in the house with your Mom and taken care of her for the last two years of her living at home then the house title can be allowed to be turned over to you. Check into this and don’t let your brother be the sole heir.
You will wake tomorrow more tired than before as the adrenaline is dropping. Please be prepared to eat well so you can get a bit of rest before the next roller coaster ride with your daughter. I pray that she has a curable breast cancer and that she does well with the treatments.
My pet peeve is, “You deserve to live your own life.” That implies that my life is somewhere over there, out there, apart from my caregiving. Well, despite the fact that my pre-caregiving life was vastly different than the present, this IS my life, and it’s only one part of it. I’m going to enjoy what I’ve got, while I’ve got it.
Most of these things have been said and if not you can tell that is the thought, why don’t you work, trust me I work harder than most will ever do, not to mention the fact that nobody seems to care how tired you are or how bad you need medical attention but have no help, hence, it does not happen.
So today my mom passed away my heart is aching and to top it off my brother has the will it is not abiding by it I don’t know where they had it done my brother was a very controlling person took over all my mom dad’s finances right now my heart is aching too much to do anything but I took care of my mom I lived in her house she wanted my brother and I to share the house it was supposed to be a half and half he lives in apartment behind me and I was in the house I am moving because he has stressed me out so badly my heart is aching and on top of that this
So very sorry for your loss. It’s hard enough dealing with that, your brother will hopefully snap out of his grief and remember all you’ve done.
I’m sorry about the loss of your precious mom,I understand how that feels after losing mom 3 months ago.Hugs and prayers you too can work it out or seek legal advice……
It has gone to far to work it out. He pushed me one day and i fell I have to concentrate on my daughter now who was just diagnosed with breast cancer at 39 he didn’t even care about that
I lost my Mother so I know how bad you must feel, I am sorry for your loss. Just remember she is no longer suffering, somehow that gave me comfort.
Wow. I appreciate what you are saying but talk is cheap. I’ve been taking care of my Mom for over 13 years. She has three grandchildren and has only seen one in the last year. She has not seen her four great grandchildren either. And we all live in the same town.
Nobody knows unless they have actually done it. My siblings can say whatever they want. I wasn’t patient enough or whatever. So why didn’t they step up and save my mom from me if I was so horrible. What kind of daughter does that make her. My mom even apologized for herself and my dad being so unreasonable at times. So in the end siblings can say whatever they want. I have my mom’s heart felt comforting words to keep me going like she said she knows the truth. And I am the best daughter in the whole world. Rest in peace dearest momma. My siblings did move dad closer to the rest of the family members but they just take him for outings from the nursing home. Kathy you are a blessing to your mother and in the end that is all that matters. Hugs and strength to you and know that in the end you will be rewarded because you will never be haunted by guilt or regrets. Bless you dear caregiver.
I’m sick of hearing, “Isn’t there anyone you can call to give you a break?” I am always tempted to say, “Well how about this, instead of asking that question, how about YOU come over and visit with my mom for a few hours so I can get out of the house, even to go sit in the park and enjoy the fresh air?!”
if you need anything call me. when I have asked for help, to take him for speech therapy, only one hour, in our own small town, I got a no. On 2 separate occasions. Don’t say it, if you don’t mean it. I don’t trust those words.
“You really have your hands full.”. – single Mom of a 2 yr old and 16 year old and take care of my 61 yr old mom..who has lewy body dementia.
Asking if Mom can see yet. She’s permanently blind.
People have No clue.
“Take care of yourself.” Seems kind of insincere. Caregiving is backbreaking, thankless work. It’s hard. It’s exhausting. Send me to Hawaii. I’ll lay on the beach and take care of myself.
Literally EVERYONE I know tells me to “take care of yourself. Do something fun! You need a break.” I’m like, “Sure! I’ll just go out and get a pedicure and do lunch with my friends and hope dad will be fine by himself for a few hours.”
Exactly!
Every time I hear that I want to say and just how am I supposed to do that and take care of mom…
Gotta love when people get jealous because you never did anything like that for them. They are angry and demand more money or errands from you for just helping you out a little bit like you are making excuses or your loved ones diagnosis is really not that difficult to deal with…like your just making it up. Or worse, they want to make it more difficult to give your loved one proper care and double your workload as if it’s not enough. Some people make it like your “holding out” on them or nitpick on where you aren’t perfect..then they want compensation for that, like they are trying to be a boss and discredit all that you have done for so many years, 365 days a year, 24 hours a day. Another one I hate is “You need to take better care of yourself”. Those kind of people just need to find a better hobby than bullying a caregiver or they need to get a real job and a life their self. Usually they are pretty shallow people that thier hardest care was for mainly thier own self in thier lifetime. That’s all they know.
I have heard all of these.
There are different stages of care giving. They’re all difficult at times and if you’ve never been in the caregiver role you cannot comprehend what it’s like.
Thank you Miss Nelda . Miss you !
Spot on
I miss you, Kathy. Church isn’t the same without seeing you.
only ppl nowadays to talk to is lasses on checkout,life eh!
People think they are meaning well , but it comes a point when you just can’t hear anymore . Enough is enough .
Good article. Some of these hit the mark with me — things I didn’t want to hear when my Alex was home.
I was care giver for 15yrs. to both my parents and myself, I had cancer and chemo. I was also a wife and a mom of 3 young children. I was also the only one of 4 children close enough to my parents that it fell to me. My siblings did come each in turn to help out , but 15 yrs. is long. My parents have both passed in the last 5 yrs. my children have grown and are living on their own, and now its my husband and myself. I really can’t say what would have helped the most at those moments when everything was at it’s worse, but at the end I know what hurt the most. When my dad passed in 2012, so many people came to support us, in his last moments and funeral, (he died of lung issues and heart) when my mom passed( in 2014) people from her own family couldn’t be bothered when I called to tell them she was dying. My mom had dementia and said things that hurt. She just wasn’t always nice the opposite of what she was when she was well. Even at her funeral some of her own brothers and sisters didn’t come. That hurt… having to explain to people always that it’s not her talking it’s the dementia, they are all adults and should have understood. I’ve voluntarily backed off of seeing family. I know I should let it go and I have a bit, but it is still present I will slowly let it go. And now I will say it frankly, I almost feel as if I am now an only child. I am happy with my little family and my soon to be here first grandchild. (and no one ever offered to take any weight off my shoulders or make meals, not even when I was having chemo. 4 times in those 15yrs. They said call if you need anything, how can we call, we don’t know what we need…. just do something voluntarily .
Good Lord Almighty, woman! I am shocked and appalled, amazed and inspired, … I read every word you wrote and am so very glad you put it all out here for us. I have some similar dynamics, but my health has remained remarkably good. Also, I have no children. After reading this, when I begin to bemoan my woes, I will surely have more hope for my future. I respect you and wish you JOY !
Jenny Richards Thank you very much.
Things to say:
“I brought a casserole and a chocolate cake.”
“Go someplace fun and take some time for yourself – I’ll watch your parents.”
“I saw X and Y at the store that I thought you’d need – here they are.”
…I don’t want to hear how great they think I am. I don’t need the affirmation – I need practical, physical help and a break time. I’m a caregiver, not a saint.
Right on !
My favorite has always been “I don’t know how you do it, you are an amazing person” and now the my sister in law has passed it’s “what are you going to do with all this time you have now”
Great article! I care for my husband and either myself or our son has to be with him at all times, I just recently went out alone with our son to a movie , first time in 14 months we got to be together out of the house without my husband.
I’ve had zero support as well
Heather, I have 2 sisters & a brother, but I can’t get any type of relief from any of them. I took care of Mom & Dad & now since Dad passed 2 years ago, I’m sole caregiver for Mom. The others have excuses for not doing anything, but I am not allowed to even take a week off without finding care & paying for it. I’m alone and live on early retirement, so it’s not easy to pay.
How about working a full time job and being a caregiver. I get little to no help. It’s awful and lonely
It must be…my heart goes out to you!
Thank you. I’m a preschool teacher and I take care of my 49 yr old husband with moderate/severe dementia
How about things like, I will be there this week to help with whatever you may need and then follow through and do it!!!
We only hear from them once a week. One is unable and tries to talk for an hour. The other is and if we get the call is only a 10-20 minute talk. No other certain ones call. Only want memory of way they were. My mom is so hurt.
I ask them for large amounts of money!
I really need some help! I cry out but am seldom heard or it seems most including family are just blind. They are not living it so it is okay……….NOT.
The ones that really get me are the ones that have been or are currently caregivers and tell me that it is not as hard as I make it out to be.
The one I hate is especially from my close friends: well honey, your mom’s really been through it, she’s really had a rough time. No kidding? Who has been there 24/7 365 taking care of her, rushing her to the hospital, giving CPR while her lips turn blue, feeding her, washing her, jumping up when she hollars? Are you kidding me?
Peoples say things to be nice and some of the saying we don’t needs to hear. It can turn into negatives. I have been on both sides. I saw peoples being caregivers and no telling what I may have said that was taking the wrong way. But when you actually became a caregiver (as I was for 8 years) you see things much differently. I respects other caregivers. Just like someone said in the article: When can I come relieve you for a few hours? Or just bring foods / happies.
Exactly
Forgive them,
For they know not what they did.
Just said this this past week when I told my Sister she’s not welcomed in my home. Thinks she’s going to prance in after 2.5 years. Got a disgusting letter from her son. Who doesn’t even have a clue what I do.
Forgive them, for they know not what they do!
Kristina Meredith Fensler good one to pocket away
I think one part of caregiving to keep in mind when having these difficult conversations is that its a different process for each caregiver. People care for different ages with different diagnoses and different support systems. A lot of caregivers care/supervise for 9+ hours a day, which is a large amount of time! Everyone handles caregivng differently, and not everyone understands the burdens of being a caregiver. I try to keep the variety of caregiving at the forefront of my mind when talking to those who are caregivers. Not everyone understands what being a caregiver is, or the amount of work that goes into caring for a loved one.
I couldn’t agree more.
I have had the one where I made time for a woman, something i dont even do for friends. I have been told what I should do in my life as I was judged on what I would be like after my parent dies and would get mad if plans had to be changed because of his illness. I hate hearing what I should do, not many people know what I have done and to be judged on it is an insult to my face. The same person told me she loves me but can’t tell me why. Just all around a screwed up person
in this line of work, we no apprieation, hardly a thank you, hardly a compliant. it just its your job, just do it”. no consideration of C.G. feelings, or if we need a break, to eat. some of us are 24/7. we get no time to our own private life styles.
I constantly have to remind people that we don’t go home at 5. I don’t look forward to Friday, there is no weekend for us. I don’t even get to shower without getting hollared at/for.
Bitter and rude? Seriously? Look at your response and THINK about what you said. A lot of caregivers barely have the money to keep food in the house and the utilities turned on, and you tell them to hire help? You need a real-life reality check. Tons of caregivers have family members that refuse to lift a finger to help. Maybe you need to stop being so critical of people who are doing the hardest job on earth, mostly for little to no pay, and very little appreciation. Shame on you!
I know I have ran out of funds more times then I can count. One was a night in the er for pneumonia and didn’t have the funds to even get out. It kicks you in the gut. I know personally I have to spend around 300-400 a month in otc and prescription meds.
This article sounds bitter and rude, try being happy that someone cares enough to even say, I don’t know how you do it…if you need a break that bad maybe you can hire help so that your not asking friends and family. Be happy for what they do for you and your loved one and stop criticizing what they don’t do.
Seriously? I am caring for my wife. Her daughter lives with us and is mentally ill. I am pulling double duty and by the fifth of the month the money is gone, and you think we could just hire someone? Wow! Bittier and rude? You are at the very least ignorant of the reality we all live with in this area and have no idea of the tremendous stress we often labor under.