Five Things Caregivers Wish You Would Say

Rosemary Rawlins, Caregiver
April 18, 2013
Five Things Caregivers Wish You Would Say

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Sometimes, as caregivers, we don't know what to ask for, or don’t feel comfortable asking for help or sharing our problems with others — even with family and friends who are close. I put this short list together from my own experience of caregiving as well as from input from some other caregivers I know. The first quote was actually said to me in the emergency room by my dear friend and neighbor, Kelly King. She didn’t know it then, but she was modeling how to be the best kind of friend you can be in a crisis.

“I don’t really know what to say right now, but I’m here if you need me.”

During times of crisis, what a caregiver often needs is presence — the presence of a family member or a close friend — not pity, not small talk, just presence.

“I hate that you have to go through this.”

Simply acknowledging that the situation is difficult can be comforting. A little commiseration can go a long way, as long as it doesn’t turn into a long depressing rant about the situation.

“I’ll pick the kids up for you so you can stay at the hospital.”

In this same vein, any version of this works well:
“I’m on my way to the store. What groceries do you need?”
“I’m on my way to the post office. Do you need stamps?”
The caregiver does not have to ask for help, and a job gets done.

“I’ve been thinking about you. Would you have time for a visit this week? You name the time and place.”

Caregiving can be lonely at times. Some people who feel uncomfortable stay away, and caregivers have little time to go out. Reminding a caregiver that you are still a friend and allowing the caregiver to arrange to meet when and where it’s convenient is respectful and compassionate.

“You are a great caregiver.” “You’re doing everything you can.”

Encouragement can boost confidence and lift spirits. Encourage away!

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Comments (25)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Anonymous replied on

Family doesn't help us

Anonymous replied on

What great advice. thank you.

Anonymous replied on

This is wonderful! I wish I had had access to it 2 years ago. Thank you for writing this. Best wishes.

Anonymous replied on

Good thoughts--- I'll add "How are you doing?"-- and mean it, and then just listen--no comments or advice.

Anonymous replied on

As a caregiver I say, Thank you!!!

Anonymous replied on

It has been my unfortunate experience that care givers, who are being paid to care - don't want to be there, have no interest in helping beyond their 'work to rule mentality', have left me in tears, frustrated me with their unkindness and then lied when I complained. And I wonder how many others have experienced this through organisations such as Enliven, Royal District Nursing Society, Panacea, to name just a few.

Anonymous replied on

If only I had friends like that, who would actually do things like this or say it. Or even the one family member I have...

Anonymous replied on

So, so true!! And my wonderful friends have said all of those things to me. Now that my husband is almost 3 years post-injury, however, I\'m finding it hard to ask for help again; that I should \"have a grip\" on things and have them figured out. But I don\'t, not all of them. And yet I hesitate to ask for help. What caregivers need to understand is that, by NOT asking for help, they are only hurting and over-stressing themselves.

Anonymous replied on

Excellent post. Thank you so much. Just once I would love to hear someone say any of those things. It is not easy to ask for help and when I do, the standard reply is usually "No problem. I will try to get over next week". But it never happens. The one comment that I get over and over is, "That's too much for you." While they mean well, that statement just makes me want to scream at them to step up then if it so obvious. There are many ways that family and friends can help without interrupting their own busy lives too much. My daughter does not have alot of time to visit but she always calls to see if I need anything when she is going to the store. She also prepares extra meals and freezes them while cooking for her own family. Not only does all this help relieve me of those tasks, I cherished the few moments that I get to spend with her while she drops these things off. I love this blog. Thank you for sharing.

Anonymous replied on

My Husband was hit by a drunk driver 21 years ago the driver with no insurance. I've been Caregiving for 21 years and trying to keep up with no help. I wish I could ask now but people think this is your life now. Not realizing as you get older it get harder to care for your love one. I wish some one would ask me can I do something to help you.

Anonymous replied on

Wow, I wish I had a "like" button for all these comments. So much added. Thank you for responding! To those who don't have friends and family helping, my heart goes out to you, and I do realize that many TBI experiences go on far longer than friends of caregivers expected. As a caregiver myself, I tried to show interest in other people's daily lives when I shared my own feelings, because otherwise, I felt like I was sucking all the air out of the room with my endless list of problems. After a bit of venting, I might say, "So let's talk about you! What's going on with you?" and it felt good to listen to some "normal" problems too. It kept a few friendships alive that might have died otherwise. All the more reason to share our insights, struggles, and suggestions for what helps and how others can best help us. So glad to have this wonderful community of caregivers online.

Anonymous replied on

Caregivers could also use a list of things for friends and caring family members to say, like: 1. Never say, "I'm sure this is all in God's plan." While that may or may not be true, it's not something an overwhelmed caregiver needs to hear!

Anonymous replied on

I just want to say thank you to all the caregivers out there. All of you ,including my husband, are the real heroes in this world.I hope that you know that the people you care for want you to know how much they appreciate you. Three years ago our lives were turned upside down.Very slowly the new view is emerging and a different life has evolved.Thank you all....you are very,very valuable.

Anonymous replied on

Cannot reinforce enough comment of not asking me what do you want me to do - better that you say " Where's the lawn mower and I'll mow your lawns." "I am bringing XX with me to mind your son while I take you out for lunch, will Saturday at 1pm be OK with you?" " Here's some Siberian Ginseng, take it and it might help with the energy depletion you're going through." These type of scenarios take the guess work out of things, requiring less effort on my part as caregiver - so much appreciated and welcomed.

Anonymous replied on

I am overwhelmed by the blog and the comments. So glad I came across this for additional support and encouragement. As a caregiver, I say to other caregivers "Well Done!"

Anonymous replied on

Undeniable!

Anonymous replied on

After 6 months of intermittent internet searches trying to find any info to help me cope with becoming a TBI caregiver, I am thankful to have found this website.  I am still looking for helpful hints on what works when trying to help a TBI loved one learn daily living skills in the home until we can get more help from community resources. 

The TBI survivor I have taken into my home is my best friend's daughter who is a 23 year old adult now (my BF was killed in the auto accident that caused her daughter's TBI when she was just 7 years old).  This accident happened over 16 years ago, continued outpt rehab after her inpt. care was very inconsistent and already she has made so many improvements since I've taken her in 6 months ago but it has not been without lots of frustration.  The time it is taking to get state support so that we can get community resources available to us has left me emotionally spent as I refuse to give up and try to do what I can at home to further her recovery and help her be/do her best, problem is most days it becomes a battle of wills.  She says she wants to be better but is not only apathetic towards daily activities (which I know is related to her injury ) but she is so non-compliant to do the things she needs to do to get better. 

Appreciate any further resource information/words of wisdom anyone has to offer.  Trying to forgive myself for all the times I know I could have done better or different but this situation has just brought a lot of stress (emotionally and financially) for our family and it's hard not to at least expect some cooperation as we try to help her.

Thanks so much for providing a place to at least be able to share, I am trying to find a local support group but no luck to date.

Anonymous replied on

I feel you...((((Hugs))))

Anonymous replied on

I've been caregiving for almost 10 yrs to my husband..and weve been cut off from everyone that we thought were friends..other than seeing the pcas that come to take care of his other needs. we have two sons one lives in ny the other is moving out as soon as he can find a house, we have a rescue boxer named Lucy other than that..oh yeah joe goes to a day program three times a wk..we would like to be able to be able to go somewhere alone ..we cant..joe is also a Nam vet, suffers from agent orange and ptsd as well as tbi and stroke..he is paralyzed on the right side..believe me i know lonely as does my joe..i wish you green horns well, many blessings

Anonymous replied on

I wish I could contact the person who left a comment on Feb. 2014.  My story is similiar but different.  I just need someone to help me.  I am a 38 year old female that through God's intervention has been caring for a 45 year old TBI male.  Will try to make long story short.  14 years ago...shot point blank twice in head.  Paralyzed on right side. 

I came into his life when my church started taking out meals to people.  A few months into the program he started coming to church with me.  He is very limited in speech.  A year ago, could only really get out yes and no.  He was living alone in a very unsafe place for him to be because his family had abandoned him.  He had a legal guardian, but the person took him food and cigarettes once a month and that was pretty much it.  For 3 months before God intervened, they hadn't even done that.  He went all winter last winter with no water.  Well, I won't go into all detail....it was a horrible situation..one that no human should ever go through.

I have super limited information on his background.  I have been his legal guardian for almost 4 months now and have him in my home and I am currently staying with my parents right beside my home.  We are waiting on results from some tests to get him into a caregiver home program, which I hope I will start finding answers through.  I've been going at this blind for 4 months now.

A recent trip to the hospital for seizures (where he basically got kicked out of 2 different hospitals when he would snap and pull all his tubes out) .  This guy should have never made it for 14 years alone.  But it made me realize that I wasn't capable of caring for him if I couldn't provide for his medical needs.  And I realized I hadn't been prepared for what it would bring. 

After coming to this site, I realized from one of the "wish they knew" articles..that I had been dealing with him better than even most loved ones care for their families.  I'm not bragging, but God has given me super patience with him and a deep love for him. (Friendly)...well, i honestly compare it to a mother's love because I'm super protective of him.  I don't rush him ever, but the lack of support for him and for me as far as caring for him has almost brought me completely under (mentally and physically) a few times.

All I'm doing is crying out for help somewhere!!  I want someone to talk to.  No one understands.  You can't be around him for even a couple of hours, days even and understand it.  I have support from my family and my church, but no understanding.  They tell me what I'm doing is good but no one understand the difficulties I've faced. They think after spending a little time with him they understand how his brain works.  I've been with him for 4 months now every single day and he still surprises me with things!!   I just want someone to talk to that truly understands.  I'd love to find resources to help him but I'm at a standstill. 

I won't give up on him but I'm so tired and emotionally drained.  I just need help and I don't know how to find it.  Thanks.  And I was wondering to that person who posted last, it's been a year now since you posted.  If you read this...are things working out for you and your friend's daughter?  My prayers are with you even if I don't know your name.

Cindy replied on

You my dear are absolutely amazing and selfless.May God grant you his peace and wisdom.

Anonymous replied on

I understand... Been caring for my Boyfriend that pretty much abandon him. Family and friends don't come around and I sit here daily wondering if I will ever be loved again. It's hard, cause its not just the TBI, it goes much deeper then that, its the financial, emotionally draining, and physically demanding. Most of all the the whirlwind of he is in there and the mere thought and reality he's never coming home. Lonely and scared

Anonymous replied on

I've been there, my husband was in the hospital for 6 months. A couple of these six months he was in a coma. No doctors or nurses could tell me if he was going to be okay. The most l heard was he's very very sick every time l asked how he was doing. I walked the empty hallway late at night in the hospital wishing everything will be okay. Did your heart ever hurt so much that you wish you never existed. So many times all l wanted to do was crawl somewhere or sleep and never wake up. There were many times l keep asking myself why me. Everyday l tried to find some hope to keep going, but sometimes is very very difficult. I found praying helped me a lot. Support system is number one during crisis. I didn't get that support from the side of his family specially his mom.

Anonymous replied on

My husband was in a serious car accident 6 years ago. That is the day my life changed. He spent about 6 months in the hospital, from there he went to a rehab hospital, from there he went to a long term care home. He hasn't been home since. I am his full time caregiver and a shoulder to lean on. There are times I ask myself "why us?" We had such a great life. There are times I think I can't live without him and want to die. I go to sleep at night and hope I don't wake up in the morning.

Anonymous replied on

Thank you for sharing. My husband had a concussion, brain bleed a few months ago and I cannot tell which is the brain injury and which event issue simply his stubbornness or personality.  As a caregiver it is hard to figure out how to give him some responsibility so he feels needed and valued versus overseeing certain responsibilities so that bills get paid and we have some semblance of normalcy for our family.

I have to pray daily that God would clarify that question and provide an answer.  I believe God's will is in this for us as a family, but somehow also for those around me as we learn to work together.