…and what you can do about it

Yesterday, I read an excellent blog post titled “Asking for Help” on the Caregiver Space.  The article is chock full of good ideas and practical advice.  It was the comments that got me thinking, though.  Many sounded like this:

What if no one asks if they can help? That’s my problem….. I’m here 24/7, if someone would ask if they could come stay here for a little while for me to get out, I might take them up on it, but nobody offers that….. It’s hard…..it’s been 3 years….. A lot of people say….call me if you need anything….. But that’s not the same as a real offer….

Others on the Facebook posting of the blog said they did ask for help, but the response from siblings was ‘I think I’m busy’.

So, what’s going on with caregivers who aren’t getting the help they need from family and friends?

Fear of asking for help

There’s a cop in the head of many caregivers and that cop repeats things like, ‘you should be able to do this alone. What’s the big deal with doing laundry or shopping or banking for Mom?’  Many caregivers believe that they are shirking their obligations and actually betraying the love they feel for a dependent loved one if they ask for help.  It feels like an admission of failure in the most important job of your life.
Caregiving websites are littered with blog posts, resources and inspirational sayings about self-care.  We’ve all heard that we must care for ourselves in order to care effectively for our loved ones.  So, why is it so hard to ask for help?  And why do people say no when finally the request is made?

One answer could be that by the time a request is made, the caregiver is so exhausted and angry that the request sounds angry.  And a caregiver who is overwhelmed is not going to be asking for something small, the request is likely to be for someone to come and ‘take over’ for a few days.  That’s not unreasonable when one sibling (or parent) is doing the lion’s share of care.  But there may be a good reason that even someone who wants to help will say no in this situation.

Fear of the unknown

Caregivers who aren’t used to asking for help often don’t share the details of their caring lives with family and friends.  Not sharing stories and information is part of the ‘Oh, I can do it myself, it’s all fine” modus operandi of the caregiver who is locked in the time bomb of ‘look after your own’ mentality.  Family and friends who are asked to help someone in an emergency whose needs they know nothing about will be afraid to help, especially if the request sounds angry or desperate.

How to get the help you need

Change the words of the cop in the head – say instead, “I need my family and friends to be on my team.  I need to help train them. And that training will take time and encouragement.”

Begin training on a good day, when everything feels under control.  Think of what members of your family naturally like to do or talents they might have.  The agenda is to familiarise your future team members on the needs of your loved one.  Remember, every caring task by itself is perfectly doable.  But taken together and over time, caregivers become overwhelmed trying to do everything alone.  Pick one task you think a friend or relative might be able to do.  Ask that person to do that task once a week for a month with a promise to re-evaluate on both sides after the trial period.  Some caregivers might not have the words to make that first request.  Try saying, “I know you love cooking and we always love all the treats you prepare.  I don’t have time to cook a healthy meal every night, so I wondered if you would like to make us a meal once a week for a trial period of month or so?  You could pick a day of the week that works for you and we can check in after a month to see if that day works for us all.  What do you think?”

The reality

The reality is that most people want to help, but they don’t know how.  And they see the danger of becoming overwhelmed.  That’s why it’s important to choose small tasks that people can absorb into their lives and feel good about helping in a way that exploits their talents without feeling out of control.  Once family and friends have some experience in helping that feels good, they will be much more likely to help out in an emergency.  They’ll be your teammates in caregiving.

 


Donna Thomson is a caregiver, author and activist.  Her book, The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (House of Anansi Press, 2014) is available from all major booksellers in the USA and Canada.

Originally posted on The Caregivers’ Living Room

Written by Donna Thomson
Donna Thomson began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author, consultant and writer. Donna is the Special Advisor for Caregiving at Tyze Personal Networks and is the International Advisor to the PLAN Institute for Caring Citizenship. She is the co-founder of Lifetime Networks Ottawa, a PLAN affiliate and is a member of the Cambridge University Capability Approach Network. Donna is also an instructor at the Advocacy School (Ottawa, Canada), teaching families how to employ best practice political advocacy tools when advocating for care. Donna holds degrees in Fine Art (Theatre), Education and Theatre in Education. Donna’s interest in new modes of social engagement for marginalised families led her to sit on numerous boards, such as the London International Festival of Theatre, Women for Women International Leadership Circle and Dovercourt Community Association. Donna has spoken on disability and family wellbeing extensively, including at the London School of Economics, the Skoll World Forum, and the International Centre for Evidence in Disability.

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79 Comments

  1. Some don’t help because they are too self-absorbed to think past their own needs.

    Reply
  2. Ummmm…. no one helps. Just drop off dinner or a casserole . At least that would be done and off the list for the day.

    Reply
  3. There’s no one left to help me my mom favors oldest twin and I believe no one wants my job all of my family what’s left of them have serious health issues like ours

    Reply
  4. Can your next article be “Why no one visits your poor mother, and why your friends stopped texting and never call”

    Reply
    • Thank you sharing this. I thought I was the only one.

      Reply
  5. Because they don’t want to. They want to tell you to take care of yourself you’re running yourself ragged Great like we didn’t know that. How about coming over and taking bro shopping at Walmart? Or taking my car for an oil change. Or the million other things they could freaking do. Nah they’re too busy. Oh and I’m here with just tons of time on my hands. It’s hard enough to ask for help but to get ignored, dismissed freaking hurts.

    Reply
    • Sorry you are dealing with this alone. I fully understand. My MIL raised her two granddaughters who both live within 15 minutes of her but once MIL was diagnosed with Dementia they walked away. Obligatory phone calls for first two years, an occasional holiday for only two hours, now nothing.
      “Freaking hurts” is right. Husband and I spent two decades driving over 3 hours round trip at least twice a month for these girls to have extended family love. We were very close for those 20 years. More important than helping us with the care, they walked away from their grandmother who gave them her all, from time to retirement years to financially helping.
      I tell you this, not to whine but in hopes my story is harder so yours seems lighter. xo
      #caregiversunite

      Reply
    • Had a family member come ‘help’ for a week. Only thing I asked him to do was take the car in for an oil change, I was paying. He’s a total car guy… Still didn’t even do that. Fine if you want to come visit (even if it’s more exhausting having you here) but don’t pretend you are going to help.

      Reply
  6. If they wanted to help, they would.

    Reply
  7. For some family members, their only contribution is a 20 minute phone call once a week. Big whipped dee doo. You want to help…call the caregiver…offer your services.

    Reply
    • AND they pat themselves on the back for giving a once-a-week phone call.

      Reply
  8. Concluding that everyone actually does want to help is false. If they did, they would, but they don’t.

    Reply
  9. They are not willing to go the distance in order to help someone, besides themselves. They may “think” if they do help in any sort of way, they may get stuck with what the caregiver has been selflessly giving for years. They only think this…because it is what they would do. I have learned in the last 3 years, how sickening selfish, some people can be.

    Reply
  10. Don’t have to worry about this one because nobody will help…one child hasn’t seen her in over 3 years and the other took care of her robbed her silly then I moved back to take over her care…she refuses to see her mom…first jerking son, second oldest child, daughter …
    I got this…don’t want there help anyway….my mom is my best friend forever….

    Reply
  11. That is the Reality Sally Barry. This day and age it still is respectful to honor privacy. Sometime Wish God Blessed me with a sister . Not the situation.

    Reply
    • But Nancy … You already know what’s in it. Besides, I’ll give you a free copy.

      Reply
  12. Wound up in the ER with my mom for the 100th time this summer alone. When I called my brother to ask if he could come and sit with her he told me he was out of town (Yeah. Down the Jersey SHORE!). Hope he enjoyed himself. I haven’t been to the beach or anywhere at all this summer.

    Reply
    • Yep. Over 5 years caring for my mom while my brother traveled the world. So frustrating when she was able to follow him on Facebook and would boost about his current adventure. Meanwhile, I had just canceled another trip and was disimpacting her bowels or some other unsavory task for the 100th time. The first 2 months she was on hospice he managed to cancel a trip to see her but still went to Colorado, Utah, Germany and the French Alps…. He called every once in a while to tell me how hard this all was on him though!

      Reply
  13. Nobody wants to walk into a house that smells like urine. They are afraid your loved one will need a diaper changed. That’s why people don’t want to come and ‘help’. Let’s be real here. Someone might come to ‘visit’ for half an hour or do a little shopping for you, or take some filthy laundry to the laundromat for you, if you are lucky. More than that? You are out of luck.

    Reply
    • This is actually true. Most people wont even visit my MIL because the smell is nauseating. And God forbid, they might have to listen to her babble for a few minutes! Two living children left who just wont come around. Its sad!

      Reply
  14. It is very hard to ask for help!

    Reply
  15. million dollar question

    Reply
  16. I have 3 siblings. One lives 2 minutes away. Right before I moved in with our parents to care for them she told me that she would not sacrifice her life to take care of them. But it’s ok that I had to sacrifice mine? I retired on disability, no less, and I have been doing this for 8 years. I can’t just pick up and do things I enjoy. But all of my siblings go places and do things whenever they want to. They have NEVER called and asked how I am doing, how my parents are really doing or to offer to help. My relationship with them is broken beyond repair. To hell with him!!

    Reply
  17. I’ve been offered help, but my mom is mentally disabled and would rather have me do it. It’s hard to deal with because I don’t want her to be upset.

    Reply
    • You’re not alone! My mother says the same thing …… which makes it really hard on the caretaker! Like YOU probably do too, I just do it myself so she won’t be upset!

      Reply
      • Same here! Lol, for me, the most helpful thing about this article is these comments and connection.

  18. I guess I am fortunate. My oldest son helps me a lot with Daddy. (drawing his insulin, cooking for him, getting the bathroom ready for him to take a shower, making sure he takes his pills.) When I was rushed to UMC last year, he literally took over, taking care of Daddy, for me. My brother, Allen, was going to put my Daddy and Oma in a nursing home in Florida. He just wanted My Daddy’s money. He has never helped with Daddy. I did have to put my Oma in a nursing facility because her Parkinson’s and Skitzophrenia got so bad and I am not able to take care of her because I have MS and other health conditions. Daddy and I go and see her every week. We used to go everyday but after I was diagnosed with cancer, I learned that I can not always be on the go trying to fit Drs. appointments into the day and trying to go to the facility everyday. Since Daddy does not drive anymore, I have to take him. I have to stay there with him because I don’t expect the staff to have to take care of him. They have too many residents to take care of.

    Reply
  19. My situation was having no siblings to help. I was able to hire caregivers to help me 24/7 except Sundays.
    My mother passed in January, then in May my cousins’ 16 year old granddaughter got killed in a wreck, and Memorial Day weekend a tornado put a tree in my mom’s home as I hovered in the hallway alone.
    Now the house is so damaged everything is being moved and I have taken residence in a motel and soon in a house across the street. What a year!!!!! I wish I could turn back the clock even with all the stress of caring with my mom, things are so upside down.

    Reply
  20. I don’t agree with the segment about not telling people about the problems you are facing. GO AHEAD, TRY EXPLAINING TO THESE PEOPLE, AND SEE WHAT YOU GET. They will deflects, change subjects, or victim blame, then quietly drop you because you’re ‘negative’. Come on, get real!!! This article comes very close to blaming the carer, in my opinion.

    Reply
  21. It’s still the caregiver’s fault, in other words! Whatever.

    Reply
  22. From my own experience, asking people to help with one specific task tends to get a more positive response overall than simply asking for help, as the article suggests.

    Reply
  23. Larry’s family is 7000 miles away. I have local family and friends who can’t be bothered. My family doesn’t care about me or him.

    Reply
  24. (((Hugs&Prayers))) to all us caregivers. We will be blessed.

    Reply
  25. Or service providers or support groups..

    Reply
  26. A lot of comments here are not fair. I took good care of my mother for her last eight years. Rarely would anyone help with her non stop doctor appts for her many conditions. I did my best to keep her healthy and here with us. Mom died two years ago and I would give anything to spend another day with her . After she died my dad went to see my sisters lawyer and had me removed as his power of attorney. It hurt me greatly. Made me question everything I had ever done. They both lived with me at one point. I took good care of them. Now my sister is in charge of my dad. And is not liking what she got I think but I don’t know my place now. I feel like I will never recover. And never truly forgive him. I got the papers revoking my poa two weeks after my mom died and three days before Christmas by a certified letter. And the day after my husband had taken my dad to be seen by an eye surgeon friend of ours for an eye infection. My heart will never understand and our relationship will never be the same . So not everyone is just being lazy or not loving their parent some of us have been thrown away for no reason.

    Reply
  27. You can’t force love and compassion. Either you have it or you don’t. Families don’t automatically have that ability to care. Mine never wanted me to bring my boy home and care for him myself. They were not with me for anything. At the end of the day…who you see around you, in your lil circle….those are the ones that matter. Even if it is just you and your person. Don’t ever lose heart because no one cares, because you already have the ones that truly matter. Not easy to grasp the fact that family is crap but not impossible trust me. There are no excuses for love, you have it or you don’t.

    Reply
  28. Most do not want to help. I was told be my sister not to expect her to help
    It is selfishness and living an lifestyle illusion. But the day will come… No illusions about that.

    Reply
  29. I disagree as well. The very few times I’ve asked for help from my siblings and close friends who say, “If you need anything let me know” bail out when asked. The one positive from that is you learn to do things on your own and not rely on anyone.

    Reply
  30. I asked for help and was told I don’t understand what it means to be a caregiver. Won’t ask again.

    Reply
  31. Some just don’t want to interrupt their own lives…it’s uncomfortable

    Reply
  32. I disagree. Most don’t want to help. Those that do, WILL. I chose to be a caregiver, for as long as I was physically able. I have no regrets, and feel no obligation toward anyone who left us high and dry.

    Reply
  33. It is fear of the unknown & scared of “what if it happened to me “!!!

    Reply
  34. My sister said she couldn’t even handle changing her Grandchildren’s diaper.. yep..it takes a special kind of person who has the guts to overcome the challenges. I lost my mother at age 97.. I’ll never regret being there for her.. was one of the most amazing part of my life.. to you all who have the guts!

    Reply
  35. I have never asked for help , because I feel like I woulnt get it anyway cause no one cares

    Reply
  36. Great article .. I’ve found many true statements there in my experience of caregiving over 20 years but who is counting now ..
    Each caregiver has very different experiences .. the word “caregiver” is probably the only common denominator

    It’s a roller coaster for sure..

    Just living it moment to moment one day at a time ..

    God Bless all caregivers

    Reply
  37. They just do not care enough to see the need or try to put themselves in your shoes.

    Reply
  38. And some family members won’t help even if asked– especially the ones who said, “just put her in a home!” Some don’t want to be bothered…

    Reply
    • I don’t understand people like that. I did it all for my sweet Angel in heaven. No help from siblings. Not even a thanks. They did me so wrong and not a word since they got money.

      Reply
    • Lorri Cothran Smith so sorry you went through that. I sometimes think the reason I get no help is because my mom really doesn’t have any money– so they figure, “what’s in it for me?” It’s just sad every single day.

      Reply
  39. Didn’t read the article but some folks can’t handle it for whatever reason

    Reply
    • Often you will find that there are some people in your life that can and will help – when you ask them to do something specific. But yes, many people cannot handle it.

      Reply
  40. I care for my mother who is on hospice and in bed now. Even when she wasn’t, I couldn’t really get anyone I knew to stay with her unless it was a paid caregiver and now, well, forget it. The 2 biggest issues that I find is that my friends are too wrapped up in their own lives when it comes down to it, or they’re actually already caring for someone of their own and need help just as much as I do. The other reason which is almost amusing to me at this point is that they can’t ‘deal with cleaning my mother and changing her diaper’. Whatever the reason, I haven’t had any help just getting away from it all unless I’ve paid someone to do so. On the other side of the coin is also the fact that my mother sees fit to make my life a living hell if I get too many people in to help. She has a lot of issues that she’s never dealt with and feels as though ‘she deserves to see me suffer as she did when she was in my position’ taking care of her mother so that she can feel better (?) about her own choices to do so. I feel like a servant most of the time instead of a daughter who’s cared about or loved. But then my mother is 96 and from that generation with all of those belief systems that go along with it. Sigh……

    Reply
  41. I have and my husband has begged his mother (only 68) to come and spend a day with him so our son and I can take a day off of being his caregivers. She’s too busy traveling (around the country and world), watching a S-I-L’s dog, or just doing “things” and it’s just too much of of chore (her words) to drive the hour to get to our home.

    Reply
  42. I discovered help unexpectedly when my grandson got his driver’s license..
    My car broke down and he had a pick up truck so while I was looking for a new vehicle , my grandson started taking me on errands .. I gladly gave him gas money and bought him lunch ..
    He learned all the places I pick up prescriptions , laundry , groceries , etc..
    So even when I couldn’t get out he was able to do my errands for me..
    Then when I got my new old truck grandson said ” don’t stop calling me grandma just because you have a car now, I have fun with you.. ”
    My husband is homebound so when grandson would bring us what we needed , we would visit and he was able to hear grandpas stories from years ago .

    I’m so proud of our grandson .. Our sons have also helped out and our daughters in law as well .. They all have jobs and are going to school etc ., as well as our grand daughter ..

    They live fairly close by..

    Other help I have found
    Meals On Wheels when needed.. $20 a week
    County door to door wheel chair transportation $2 a trip
    Samples of expensive Meds from our doctor
    Mobile Physician Services( doctors and nurse come to our home)
    Home health care and Therapy
    Shipt is a grocery shopping and delivery service $99 a year .. No charge for delivery if order is over $35
    Publix is one of the stores they use(in Florida)
    I love the Shipt service
    Lawn service $10 each time to mow , weed eat, and blow off drive ..edge

    Reply
  43. I have 6 brothers, who have families and jobs. I’ve asked for help many times minimal to large. My requests were met with “would like to help but really busy” to “you chose to take this on” So I don’t ask anymore unless its something simple, like picking up something from the store. But again I don’t ask regularly. I realized I need to make sure that I make my brothers and their families feel as if they are helping to alleviate their guilt. When my parents became terminal, I learned my brothers could not deal with the physical and emotional challenges. So now that our elderly disabled sister requires care, I go it on my own. I haven’t had a day for me in “18 years”. Yes its good when you have an understanding readily available support group or ones who are willing to learn and try. Now you may say its on me to “help” them understand and learn, but honestly I’m tired of hearing excuses.

    Reply
    • Bless you for being their Angel of mercy!

      Reply
  44. Thanks for sharing this. There is so much careful planning involved when caring for an aging parent and there can be so much guilt and fear. I had so much anxiety starting this process and I find it so comforting to find so many blogs and books that can help from start to finish. Having a positive support network is key! Being able to ask for help is the only thing that will help prevent caregiving burnout. You have to realize that if you don’t take time for yourself every now and then you are actually hurting the person you’re taking care of in the long run. You don’t want to resent them or get angry when it all becomes too much. This article really reminded me of a book that was recommended to me recently by author Pamela Wilson called “The Caregiving Trap” (http://pameladwilson.com/book/). The author is a leading expert in the caregiving industry both professionally and personally and she provides insight for both the caregiver and the recipient in this amazing book. She has helped me to “remove my rose colored glasses” and accept all the challenges of caring for an aging parent so I am prepared for my mother’s declining health, her increasing care needs and the financial/emotional costs involved. I cannot say enough about this wonderful guide. Hope you and your readers will check it out

    Reply
  45. Yes sadly due to the economic pressures started in the early 1980’s we jumped from 5 cents a stamp to over 50cents, 49 cents for a half gal of milk to a couple of dollars, $15,000 for a 3 bedroom home in a good neighborhood to $250k median in a high crime city, $2000 for a Volvo to $30,000. Most families require two wage earners reducing the number of caregivers available. Good high paying jobs are not available or even possible for everyone. We can’t ALL be CEO’s, Dr’s politicians……. even if we ALL went to college for it the jobs wouldn’t be there for EVERYONE. Coupling that with our “thriftiness” (or cheapness) of cutting back allowed time in a nursing home, refusing to cover assisted living which would be cheaper than a nursing home, and sometimes cheaper than paying for IHHS as well as for 24/7 care, refusing to pay for board and care HALF the price of a nursing home for those that don’t need one, we have a growing number of people needing help and unable to get it. Caregivers who become cared for after getting “broken” lifting and caring for the person as well as the rest of their own family and personal needs. Emotionally spent and not able to care for yet another person.
    Caregiving isn’t for sissies when a person is really caregiving.
    We need a better system, better planning as a nation, and check out nations that successfully integrate elder care into daily life and have the support systems to manage it and then do it-

    Reply
  46. Sometimes the reason people don’t help is simply that they don’t want to help. They prefer a living a self-centered life and are unwilling to sacrifice or be slightly inconvenienced. I am one of 4 sisters and the primary caregiver for our mother who has required around the clock care for 16 years. I’m the only one who works, is a single parent, etc., and only one of my sisters assists when she absolutely has to. The other 2 have a sense of entitlement and make it known clearly that they view it as an imposition to be asked. One simply doesn’t respond to requests for help. The other attacks–either aggressively or passive aggressively. They both rationalize their actions, attack me if I say anything, and feel justified. One day it will be over and I will leave their pathological behavior and reasoning behind. Now I don’t have the choice of dealing with it, but then I will.

    Reply
    • Thank you for saying the truth! I asked for help, but my siblings didn’t care their excuse? It is Your burden to cary… SAD VERY SAD!

      Reply
  47. I have found it very hard to get help because everyone really *is* busy. Back in the day when I was growing up (the 1950s) there were many women at home and they were the ones who did this kind of thing – helping neighbors in need, even with small things like picking up a few items at the grocery store or agreeing to spend an afternoon with someone. No one has time for anything any more except their immediate family and their job. The one exception to this is at church. I sing in a Lutheran church and I have seen them make up “tag teams” of people to help someone. My ex-partner (whom I care for on the weekends – she does not need 24/7 but she is unable to handle most ADL like cooking, shopping, laundry, and taking the garbage to the basement) is not a member of that church so the point is moot although if I were truly in extremis I might ask someone. There are often young people at loose ends but they expect to make money, even just $10 an hour, which she (feels she) can’t afford (also she doesn’t want anyone male alone in the house with her other than a health provider from a certified facility). Although sometimes people will help in ways that are surprising. There is a couple (in their 60s) who lives in her building and they were buying an air conditioner so they not only picked up one for her (she paid them for it) but installed it

    Reply

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