“So… how are YOU?”

That depends on who’s asking. I mean, do they really want to know? I’ve already spent at least ten minutes bringing them up to speed on my husband’s health and still wasn’t through.

“He’s been through a lot. There was the surgery for the perforated diverticulum in November which left him with a temporary colostomy.” She cringes. “And that was when they discovered the lung cancer. The CT scan was aimed just high enough for them to see the cancer, and thank God they did. They caught it early.” Okay; almost finished with part one of how Steve is. “It’s his body, but I guess we’ve both been through a lot.” I was trying to turn the conversation to the “we” vs. the “he” at this point. “When we started looking for an oncologist and a surgeon, they told us we’d first have to wait ’til the other surgery healed before they could start on the cancer. Altogether, we should be finished with three more surgeries by the end of next year. Then we’ll have a better idea.”

That’s the condensed version of the reply to the sympathetically asked question: “How is he?” There was no way to explain how I was without first explaining how he was. In most conversations, my evaluation was interrupted with prodding questions looking for still more detailed information from the interested party and generally took a half an hour to relate. IF they asked how I was doing, I first needed to do a mental inventory: friend or family?

My friends? Well, they genuinely cared and were always up to speed. My family? They cared, but I usually hedged a little because I didn’t want to worry them and doubted they’d be able to do anything to help me anyway. His friends and family really wanted to hear, “Oh, I’m fine. A little tired, but fine,” because except for the rare two or three I knew I could always count on, the questions were a matter of good manners mixed with morbid curiosity. There was always the kiss-on-the-cheek goodbye when they’d whisper in my ear—“Just let me know if there’s anything you need.”

I had decided, not long into the process, that I would do my very best to make my friends a “normal” place.

They were by my side when I was in crisis mode, and they were there without being asked. I had, however, sensed early on that “normal” was not going to be an easy commodity to come by once we got going with surgeries and treatments for the cancer. I wanted to be able to pick up the phone and speak to my nearest and dearest about their children and grandchildren. How was golf? How was work? Retirement? Their new hobby? This plan ended up working very well for me, and on a good day, we might even be able to meet for lunch and have it feel like old times. They didn’t need a play-by-play re: Steve’s health, and if they insisted I’d keep it short.

If my friends asked how I was doing, I’d sort of give them a “You’re not serious, are you?” look and divert the question. They knew, whether from personal experience or articles they’d read in Oprah, that: 1) a caregiver’s life is very tough and 2) there were pages and pages of articles devoted to reminding us how important it is for us to take good care of ourselves. (Like we couldn’t figure that out!) Easier said than done. For me, having friends be my normal was an important piece of self-care. When I needed to rant however, they were always there to listen. I wasn’t asking for advice—just a sympathetic ear; an understanding nod; a good hug.

In the nine years since Steve’s diagnosis, there is much more caregiver-centric information available in print and online. Friends and family of patients with just about any condition can find material that can help them begin to understand a caregiver’s life. I got tired of telling people Steve’s story—and in all honesty, Steve didn’t want me telling his story to anyone. It was private and personal; if they wanted to know how he was, he preferred my telling them to “Ask Steve.”

The most difficult part of the “How are YOU?” question is how to answer when it comes from the person you’re caring for.

I never wanted my husband to worry. I was all “stiff upper lip” and such. He knew I was tired and frustrated, but he also saw that I just kept going. Until I couldn’t. When the time came and I asked for help, he knew I needed it and made sure I got it. I was lucky—until just three weeks before he died, he was totally in his right mind and we talked about almost everything. My time with him the last year of his life was probably the most satisfying year of our thirty-two years together. He’d always known I loved him, but he’d never really gotten how capable I was. He had taken the fact that I did “everything” for granted. So, our last year was one of mutual respect on a whole new level. When he’d ask “How YOU doin’?” he’d get an honest answer.

I’m a self-starter and like many caregivers, found it hard to ask for help.

When I finally recognized the toll the cumulative emotional strain was taking on me, I looked for an online support group. I couldn’t commit to a face-to-face group—it wouldn’t be fair to other caregivers if I didn’t show up—and it seemed I needed to be on hand at home, more than not. I was lucky to find a group of people going through what I was going through. I didn’t have to spend half an hour explaining Steve’s condition because this chat wasn’t about Steve. It’s hard to delineate the caregiver-patient equation, but they are as unique as they are symbiotic.

When these women asked how I was, they really wanted to know—and I could give them an honest answer: I was tired, frustrated, and angry for sure, but I could talk to Steve about that. What I couldn’t talk to Steve about (until very near the end of his life) was how scared I was, not just of the day-to-day problems, but about what my life would be like “after.” I needed to learn how to talk to Steve, so he could hear me, about his business and our finances. These were very threatening topics—particularly scary for him—and my online friends knew the language I should use in order to comfortably open a channel of communication.

Because of my weekly chat, Monday nights from 8:00 to 9:30, I was able to keep my wits about me.

I had people to contact if I began to freak out or if I had test results to brag about. Not everyone understands how those little triumphs get you through some very bleak times.

That group is what led me to found this site. This kind of collaborative, supportive mindset cannot be overrated—these were people who really cared how I was doing, while they fully understood that my life was all about caring how Steve was doing. I joined those women every week for a year-and-a-half, and as concerned as we were for each other’s welfare, the words “You know, you have to take care of yourself first” were never uttered.

So… How are YOU?

Let us know in the comments.

 

Written by Adrienne Gruberg
Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.

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32 Comments

  1. I’m angry at the world. I’m tired. I’m pissed. I keep asking for help, and nobody responds. Nobody cares. Nobody says to me anymore “Call me of you need anything”…except at work. Work, where I’ve busted my ass for years. No thank you’s, not respected.Took away my night shift differential pay and I still work nights. Im the go to “manager but not the manager who fixes the biggest problems”. I’m sure they don’t like me. Nobody likes me. I have no friends because they are scared of my son and his death defying 15 diagnosis’. I’m tired of my mental break downs. I asked 2 doctors for meds and they both said no because a special needs mom should stay focused. WTF. And if one more person says, “I don’t know how you do it dear” I’m liable to punch their mouth. I’m sick of hearing it. I don’t know any different that’s how. Do you know what’s it’s like dropping your immobile child because he’s almost the same height and weight as you? It makes you feel like the worst mom on the planet. The pain of my knee caps sounding like rice crispness when I sit stand or kneel, my back as it feels like its going to snap in half everyday is enough to make me want to scream. At work, they just want to know why what they need from me isn’t done yet, not that I can’t get off the floor even with 2 knee braces on. I bet they think I’m faking it. But I press on, each day getting worse. I’m just a mom sucking at life who keeps pressing on with a stiff upper lip trying to get through the pain of each day. I guess others see my stiff upper lip as being pissed off all the time. I see others mumbling under their breathe, “She’s a mess. Crazy bitch. Faking her problems.” When really, I’m sick. I’m sick of how the world sees me. To help me, I need help with my son. I need helping hands in person. I need to repair ME. Thank you for letting me get that off my chest. Not sure anybody is listening, but it was worth a shot in an online world with no faces.

    Reply
    • Oh, how I hear you. Been there. DT. GTTS. I was in warrior mode all the time. Always pissed off. And tired. If you don’t already have one, get a support system to keep you sane. Tell your story. Write a blog. Put it out there. It helps. They don’t like me at work either! LOL. I was the caregiver for my mom who had Alzheimer’s full time 4 years. She passed away in April 2 months into my new job. My story is here, too.

      Reply
  2. Powerful affirmation! Connecting with other caregivers online has been my saving grace. Thank you for this site!

    Reply
  3. Well the good news is .. My hubby has been out of the hospitals and nursing homes for over a year..
    That is a record for him .. His normal was every 3-4 months he would end up in the hospital ..
    Stroke was the first thing that brought him down and us into this crazy exsistance .. Next was a heart attack with open heart surgery and new valve, combined with gall bladder surgery that went bad .. So 6 months in the hospital .. I stayed with him every day and some nights .. Never went home for 6 months..
    Lived out of a bag ..

    That was 2011 and he has had many issues since then .. The major one being the stroke limits his movement..

    At times he was able to get out with physical therapy but now he’s home bound..
    CHF is a major problem now..

    Last night was bad .. Can’t sleep laying down so he gets up and into recliner .. We are both sleep deprived

    The other good news is .. I found Mobile Physicians Service here in Florida and all his doctors , nurses and specialists come to our home which is a motor home in an RV Park.. Even blood work is done at home .. I can go on my smart phone and check his results etc

    I also use an App called Shipt .. They buy and deliver the groceries I pick out online .. They shop at my favorite store too.. No charge for delivery if it’s over $35
    And it always is .. The service is $99 a year

    I drop off all laundry and have it washed dried and folded ..
    Very reasonable

    Signed up for door to door county transportation for $2 a trip .. If needed but I don’t think hubby can get out to use it ..

    Hard to keep up with all the financial aspects of this maze.. We would like to be in a ground floor home but not possible at this point ..
    We were lucky to have just paid off our hospital and nursing home bills from 2011 and all years up till now..

    We are 76 (husband ) and I am 73 in October so we were on Medicare advantage and then changed to Medicare with a supplement which is expensive
    So pretty near $600 a month for the supplement and the RX plan and the $92 for each of us they take out of Social Security ..

    At least with the supplement .. It pays the 20% that Medicare doesn’t pay so hopefully no new bills..

    Hubby was a union Pipefitter for 55 years so we live on Social Security and his pension..

    We can get meals on wheels for $20 each for the week if we want it.. I have used it from time to time..

    Our sons live fairly close by and help out when they are not working or going to school ..

    So as bad as it is we have found a way to cope .. I am tired and I don’t know if I move slower or its that I have so much to do .. When I think about it all I am kind of proud of myself and the strength I have found to keep going ..

    Well hubby is awake now so I have shots to give and breakfast to make etc , etc

    You all take care and be Blessed
    Theresa

    Reply
  4. I am mentally spent.

    Reply
  5. Such an awesome post! Thanks for sharing such a personal experience with your readers. There are so many struggles involved when taking on caregiving for a loved one. It is draining and stressful but also very rewarding and gratifying that you can take care of someone who has cared for you. I am always looking online for article to help assist with the care of my mother. I sometimes get so frustrated I want to give up but it is so reassuring to see that others are going through the same exact thing and share such valuable advice! I recently came across a phenomenal book that has helped me immensely during this process called “The Caregiving Trap” by author Pamela Wilson (http://pameladwilson.com/book/). The author speaks from experience and helps with really difficult situations such as setting up boundaries (it is so easy to get burnt out from this!),she helps build confidence in yourself again for taking on such a monumental task, and she explains all the personal, financial and health risks involved. She even gives scenarios (many that I could relate with) and realistic options of what to do. I can’t recommend it enough. I hope everyone stays strong and positive and know that there is help and support out there!

    Reply
  6. Thank you for this article! I am relatively new to caregiving and feel like I don’t have anyone to really talk to honestly–I usually respond with something along the lines of he has good days and bad days, but I rarely am able to express how we are really doing. My dad is suffering from a mysterious neurological condition that we cannot seem to get a specific diagnosis for. He’s had symptoms of several different disorders, but all of the tests have come back negative. He first began having difficulty speaking/swallowing around December of 2013, and since then, his mobility, speaking, swallowing, and breathing have all become progressively more difficult for him. About a month ago, I was home with him, and he started having a very difficult time with breathing, so I called 911 and he ended up being hospitalized because he had aspiration pneumonia. He spent 2 weeks in ICU, where he had a tracheostomy and a PEG feeing tube put in, and he is now in an Extended Care facility. My mom and I are pretty overwhelmed with all that has gone on in the last few weeks, and just a few days ago, the social worker helped us come to the realization that he will need 24/7 care when he comes home. Mom and I will be trained on how to care for him on his home ventilator and his PEG feeding tube, but we don’t have a lot of family here to help. Mom and I are both only children, and my dad’s two older sisters live in another state and have health problems of their own. Medicare will not pay for full-time nursing care, and my parents cannot afford a nursing home or a full-time nurse either, so we are trying to figure out how we are going to care for him when he comes home. I recently graduated from grad school and moved home, but had not found a full-time teaching job yet, so I will likely be responsible for much of my Dad’s care when my Mom is at work. On days when I substitute teach, we will have home-health come, but I am still overwhelmed with this new reality and the range of emotions I am going through. I feel guilty for some of the emotions I have and because of that, I feel like I can’t let my Mom know how I am feeling (I don’t want her worrying about me when she’s already worried about my dad). On top of all of the worries I have about Dad and what things are going to be like after we bring him home, I’m also concerned about my own future. I’m only 31, and I am worried that I may never have a career if I take care of my Dad full time. Feeling that way makes me also feel selfish because I genuinely want to help my parents! One of the hardest things about all of this is not having a diagnosis– we know it is something neurological, but without a specific diagnosis, it is hard to know what kind of prognosis he has. How long will he need 24/7 care? Is there a cure for whatever he has, or will he continue to go downhill until he eventually dies? All of these feelings and questions seem overwhelming at times, but I can’t share this when people ask “how are you?” because like you said, most people are asking to be polite. Anyway, thanks for the article– it helps knowing that this is a common feeling for caregivers.

    Reply
  7. I’m alright. Yourself?

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  8. This brought me to tears! I take care of my elderly grandparents and also my mother who had a nerves breakdown. I babysit for very long periods partly because my grandparents volunteer but can’t do it themselves. I no longer have any close friends, on died almost a year ago and because being around me brings up to many memories, my other friend can’t stand to be around me. I don’t really have anyone to talk to and I’m not dealing with my friends death very well. On top of all that, I have Fibromyalgia and a lot of allergies. No one really wants to hear how I am doing, they ask to be polite. I am really starting to hate when people tell me I “look good”! It’s almost as bad as telling me I need to take care of myself or I should get away for a while!

    Reply
  9. I am the primary caregiver of my 27 year old son who is total care. He has a form of muscular dystrophy which is progressive and needs help with everything. The biggest thing is being turned every night every 2 hrs. I also work full time and have some help come in (50 hrs weekly) but no over night help. My husband helps as much as he can but gone half of the month for work. I am always tired as you can imagine and countless people have told me “you have to take care of yourself”. And I want to answer and how should I do that….countless people say “if you ever need anything just ask”. Really…Isn’t it obvious? On the other hand I don’t want to be rude so just smile and rarely ask for help. I do think looking like I have it together gives people the false sense that I got it handled. But in truth no one ever really has it all handled. It would be impossible. Thanks for reaffirming the perspective of caregiver that I have at least.

    Reply
  10. Find the ‘I’ in caregiving, and hold on tightly to it.

    Reply
  11. Hey..my name is Alecia and I am a fulltime caregiver to my son Tyler who was injured at the age of 16….he was attacked from behind, while watching a fight, with a baseball bat. Tyler has a traumatic brain injury and is 24/7 care. This happened December 30, 2006….Tyler is now 24 years old….1 year and 10 months later, October 28, 2008, his brother Patrick was killed in an automobile accident one week before his 21st birthday……when anyone ask me “how I am doing” I truly do not know how to respond. I don’t think I know how I am doing. I don’t think I am “I” anymore. It is a day to day heartbreak ….I just ran across this “The Caregiver Space” after reading “The Wind” segment. I am hoping to find some peace and understanding as I read through what others go through. Thanks for giving us “hope”…Alecia

    Reply
  12. Julie –

    Sorry it’s taken me so long to get back to you. I’m truly sorry for your loss.

    I too was hurt by the people I was disappointed in—I thought they would be there and they weren’t. It’s far from unusual—but don’t write anyone off entirely. They may have their own reasons for staying away or being distant. Usually, that’s their own fear talking.

    There are many months and years to come, and people can show their love and kindness in may ways in the future.

    Yes, your “real” response when people asked how HE was is right on. There were some people I could share the truth with but they were few and far between. Now, the how are you’s hurt because you are raw, and that’s understandable. Just be honest. It will heal and abate with time. I’ve lost both my parents and my husband and know they would all want me to have a wonderful life.

    Try going onto our FORUMS and find the Beareavement area. Sharing your post will help you air your feelings and the comments will be from people who connect with what you’re going through. Having strangers who are going through the same thing you are can be a great comfort.

    Wishing you the best. You can always write me directly at adrienne@thecaregiverspace.org.
    Adrienne

    Reply
  13. I was ‘Volunteered’ to take care of a 93 year old deaf woman while her husband 90 yrs. old was in rehab for a fractured hip and femur. I was given a 14 ft. travel trailer to stay in their back yard so I would be close 24/7. They have a Beautiful 5 BR 3 BA home that they only use a tiny part of. She has slept on couch for several years and before his fall he slept on floor in the office so he could hear her at night. they share a bathromm so the bigger part of house is pretty much closed off. In the begining I spent most of the day inside, cleaning, driving them to Dr. Appts and shopping etc. I am not family and this was my first time having to look after an elderly couple…. O.M.G! They are pretty good on their own now, he can’t do any of the chores he used to so I have continued to stick around for him. She has a mind all her own and everything from Fibromyalgia, Osteo Arthritus, Dry eye, Vertigo, what looks like a hernia in her belly the size of a soft ball, she’s 99.9% deaf, had her right side removed in the 60s for breast cancer… so for the most part, she’s not feeling well most of the time. But, she keeps her hair colored red and when she gets that done all illness seems to fade! I have seen her BOLT across a parking lot to shop! They both use a walker! she spends 2 hours in aech store going up every isle looking for bargains! then will take advantage of the Senior prices at Golden Coral. They go in around three thirty, pay for lunch…. then when dinner is put out they return for 2nds and a to go plate! This adventure takes a good 3 hours at least! So needless to say there are two sides to this woman! She prepares her own food at home, microwave dinners! lots of fruit and alot of Ensure. Claims to be lactose Intolerant and stays away from ALL Sugars,Gluten,and white bread n flours. she’s a whole 81 lbs, and meaner than the devil!!! Just got over ths Shingles. They use paper plates and bowls and cups. She uses same spoon just rinses n leaves on counter. I help her get in and out of tub and wash her back for her, once a month, sometimes longer! He showers on his own but once a month also! They are in jammies all day n week, might change if she wets…. I have tried and suggested to both of them and their son who is 65 and lives MILES away and only comes to visit when he needs money! they are set in their ways! Cost too much money to waste all that water! She doesn’t believe in pills, so she wont take them! She’ll say she did….. but I have found them… It’s been 2 years now n I truely believe I am going to lose my mind!!! I could go on cause there are so many health concerns…. but “Who do I think I am, a %$#( Doctor”!!! she’ll say! in stores I would seriously have strangers come up to me…. hug me and tell me I’m an Angel!!! HELP! Any advise will be So Appreciated! Thank you for this site! Mary

    Reply
  14. Thank you. All my friends and family have compassion fatigue and now i am alone. My daughter is 23 now and has been suffereing from a rare, debilitating disease since birth. I have worn out everyone, so there is no one to turn to when i am worn out. My poor daughter has lived past her life expectancy and is a sweetheart. She is fully cognitive, so we can talk about anything, but her needs are so great, i can never leave her. I don’t know where to turn.

    Reply
    • Deanna –

      Compassion fatigue is real, and it sounds like you understand it. Taking care of a child for such a long time must leave you more than worn out. I can’t imagine it. But being able to talk to your daughter is a blessing in the midst of the hardship.

      Since your friends are on overload right now, I want to suggest you join our FORUMS on the site and share your feelings there. You’ll find a topic that resonates with you or start one of your own. It’s interesting to see just how comforting the feedback of total strangers who see what you’re going through can be. I hope you try it.

      You can always email me directly at : adrienne@thecaregiverspace.org. Please keep coming back to the site. I think you’ll find information here that will help you and many people there to listen.

      Adrienne

      Reply
  15. I am angry, sad, blah. Today had been hard. We are 9 months into brain cancer. My husband was diagnosed May of 2014, surgery to remove 75% of Tumor on
    August 28, 2014. Many days and nights in the hospital caused me to loose a job I loved, and had for 8 years. He was too scared for me to go to work. My 36 year old son tried staying with him, but he just wanted me. I would try to go, and he cried. His cancer caused gallbladder issues, blood clots in his lungs, memory loss and speech problems. They can’t take out the diseased gallbladder until his lungs are clear. He has had 2 coli tubes so far. In 2 weeks we will know if his lungs are clear enough to operate. We are seeing 4 specialists in 2 weeks. An MRI will be done to see if chemotherapy is working. Anxiety is high.

    Reply
  16. I find I no longer have patience for people looking to to have their couriousity and their competitiveness satisfied with knowing that their own little world is so much better. My pat answer is ‘fine’, I don’t catch up, and I just don’t generally feed into it. But, my reality is so complicated and what I find worth celebrating doesn’t seem like much to others- still- it would be nice to have that kindred spirit who shares your journey, even just for awhile, who isn’t just thinking of what they are going to say next or listening with such rapt attention that you know they are just taking notes to spread their gossip *sigh*

    Reply
  17. Julie,
    I’m truly sorry for your loss. My dad’s been gone almost three years and I still miss him every day. I also appreciate how frustrating it was to be asked how he was doing. I wanted to scream, “He can’t remember much and he’s never going to be better.” That’s why I don’t ask others very often… I don’t want someone else to have to repeat, for the fifth or twentieth time that day, how bad things really are. Bless you.

    Reply
  18. My dad died 18 days ago from advanced colon cancer. He was diagnosed December 6, 2011. I always struggled when people would ask how HE was. I felt like saying, “Well, cancer is consuming his body and chemo is killing him.” How’s that for an answer? Of course I would take the high road and say it was either a good day or bad day. As you mentioned, people are typically asking just as a courtesy anyway.
    Since my dad died I’m struggling a lot. I find myself disappointed in the people whom I thought were truly going to be there for me. Many didn’t even mail a sympathy card. Really? The cards I did receive mean the world to me and some came from the most unexpected people. I will treasure those.
    And then there’s the “darned if they do, darned if they don’t” scenario–I’m annoyed by the people who ask how I am because I want to say “My dad is dead. How do you think I am?” Yet, I’m hurt by the people who don’t ask. Right now there’s no winning with me, but I continue publicly to be polite but privately be hurt, disappointed and shattered.

    Reply
  19. It is tuff to care for a loved one and care for yourself. It’s almost impossible, I cared for my beautiful Angel for 18 yrs. she was my reason for getting up each morning. Now that she isn’t here for me to care for, I find myself lost without purpose. It’s only been a month since she went home to be with our father, what would I do to care for her ‘ till my back gave out. Physically it takes a toll and emotionally too. But I loved waking up to her beautiful smile that contagious laughter that She wasn’t crazy about. But it made my heart overflow with the best feeling ever. It was always about her… I never imagined she would leave me behind for some crazy reason I always we would ride off together to meet our maker. We were inseparable until now. So please talk to each other if you’re able to. Let them know how blessed you are to have them in your life regardless of the situation. Because when they move on, its until you meet again. The wait might be short or years away. And it will be hard to get up each day.

    Reply
    • Sylvia –

      So sorry I didn’t get back to you until now. I know what you’re talking about—the good feelings we had when we were together that are now just a memory—but I hope that you have been able to find some way to move on—even if it’s only in baby steps.

      I’d like to recommend our FORUMS to you. Pick a topic that you connect with or start one of your own. Also, there’s just the general conversations area. We also have chats that might be very good for you. The calendar is posted.

      I’m truly sorry for your loss. 18 years is a long time to care for someone. They become your reason for living, but I’m certain that in your case, Angel would like you to have a life. Little by little. The pain doesn’t go away, but it does ease bit by bit.

      If you care to reach me directly, you can send me an email to adrienne@thecaregiverspace.org.

      Keep coming back. We’re here to help
      Adrienne

      Reply
  20. I am there too. I don’t remember when I have slept a whole night or when my chest wasn’t tight. Now I know there are people who truly understand exactly how I am doing. Thank you.

    Reply
    • I understand what you mean sometimes it is terribly difficult when someone asks ,”How are you?”… Sometimes you just want to look at them and say,” First of all are you sure you want to know?”
      “Yes”.
      “Okay, well I saw blood in the catheter tube yesterday. I messed up the med dosing and now s/he’s confused. I’ve been getting up every two hours to turn him and i haven’t slept the night through in 6 months… Anything else you want to know?”
      At first, I know I get a little ticked about it. But then when you think about it; if they said “yes” then they genuinely care and want to know how you are… And that is a wonderful feeling!

      Reply
  21. I also thank you for this article. In my case I wish my friends would have wanted to know how I was truly doing, but if you tell them the truth then you’re not being positive. I tried to keep saying that everything was good, thinking if I stayed positive then things would be good, but i began to get chest pains. I had no outlet. It was when I began to honestly answer the rhetorical question of “how are you” with a “today was difficult, the husband was sick all night” or “my dad still didn’t wake from his coma” that I began to cry and I also began to get more support for the difficulties we were facing. For me, hearing my friends say “you’re so strong” is like living a lie. Inside I’m falling apart, my chest aches with anxiety and I’m a marshmallow. There are so few outlets where a caregiver can honestly say they are burnt out or struggling. It was nice to read the words of someone who has been where I’m at.

    Reply
    • I struggle with this every single day and have lost a lot of friends because of it. Even though I’m lonely, friends are just too much work and I HATE getting the sympathetic sad face. Because they don’t really want to know – they don’t want the gory details of my day to day. I can’t tell you how many times I’ve heard, “Your still dealing with that?”

      Reply
  22. Thank you for your sharing….In my case its always we’re fine or i’m doing ok…theres only 1 friend who can tell in my voice what’s going on..and after my talk with him i feel better…but as far as family/friends ..I am always ok…doing great….because they all have their own lives-stuff to deal with…I am a big girl and can deal with my stuff myself….but it is nice when my friend calls from out of state…he just seems too know i need a long distance hug..:) and a ear to listen to me…
    .

    Reply
    • Jerri – you sound just like me. Thank you for commenting. I find it interesting that talking on the telephone can be so cathartic. No one is looking at you and it opens the possibility of being vulnerable and letting a lot out. When someone is looking you in the eye, it’s hard to say “This is really hard. I don’t know how to deal with it anymore.” We don’t want to look incapable or weak to our friends and family. You’re a big girl, but we’re here to listen.

      Reply
  23. Nice article. How did you find a chat group ? Was it online ? Thanks for sharing your experience. Take care.

    Reply
    • Glad you like it. The chat I found was online and was the main reason for my starting this site. When I needed a group six years ago, it wasn’t easy to find. I wanted to create a community of caregivers who would have easy access to other caregivers. We will be having organized chats at thecaregiverspace.org, so visit me there and let me know what works for you!

      Reply
  24. Wow in tears! I feel like this is my life now. I always feel as sweet as people are and as helpful as they want to be they truly dont understand. Nice to see someone gets it and has gone through it. It gives me some strength and key points to go through in my walk.

    Reply
    • I’m glad the piece resonated with you and that it gave you some strength. It most likely IS your life now and there are so many of us. I’ve gone through it and come out the other side. It’s not an easy “walk” but it can be very fulfilling.

      Reply

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