remembering a time before caregiving began

Caregiving changes your life forever. Even when caregiving ends, we’ve been transformed.

Here’s what we miss about your lives before caregiving

I miss not living in a constant state of high alert. I miss knowing what it is to go an entire day, heck an entire hour! – without worrying, thinking about meds and doctor appointments, fetching needles and prescriptions, taking vitals and filling out paperwork, calling doctors and watching for new symptoms. I miss peace. – NL

The hardest part is falling back into the life you once knew once family has passed and the caregiving role is no longer. Honestly, there really is no going back to the life you once knew. The only option is to rebuild, and it takes a lot longer than the grieving process itself.

Doesn’t it feel like we grieve the loss of our loved one AND the loss of friends we no longer keep in touch with AND the loss of a career, maybe even the loss of a house after having to sell it. The grieving process is completely multilayered. Yes, we miss our loved ones, but it’s so much more too. – SS

Your physical health and stamina are never the same. – GR

Nothing! In clarification, I don’t want to miss a moment I still have with Phil, my husband. If I think about what I miss, it means I don’t want to be here and now. It’s not how we planned to spend this time in our lives. It is what it is. Some days are easier than others. Today was a good day. – VS

Day trips, walks in nature and taking photos, going into real stores to shop instead of online. Freedom to leave the house at anytime. Being the brain only for myself. Not having to worry that something I do might cause another to die. Seeing my grandkid more often, being able to go watch her play soccer and go swimming, etc. Being able to meet friends for lunch or dinner or a movie. I’ve only been the movies once in 4 years and that was because brother was in hospital for pneumonia and theater was a block or two away. Hard to pick which one is “most”.. probably would be seeing the granddaughter more. – PM

Nothing. For better or for worse this life chose me and I made a commitment I won’t sit around and think I could be doing this or that but I can’t nope ? my heart is where I’m supposed to be god gives me the strength I give him the glory . – SM

Freedom to spend a day out shopping, even if I don’t buy a thing. Beach vacations. Not having to worry about wheelchairs and walkers everywhere we go. Having meaningful adult conversations with him. Not having to be constantly aware of where I can find family, wheelchair accessible restrooms. Having his help with the workload of running a household. Having his shoulder to cry on…what do I miss most you ask? Everything, I miss everything. The good times and the bad, I miss everything. Nothing is the same. It all changed in an instant. I feel so cheated! Not for just me! For him as well… – KG

In a blink of an eye our world changed too… It feels like every thing is upside down and backwards… .I take it one day at a time, one moment at a time… My husband’s brain disease cheated us both out of the future we had planned.. hang in there and know your not alone. – TW

I miss being a normal family before my son was diagnosed with a terminal brain disorder. I miss not having to methodically plan every move around wheelchair ramps, handicap parking, buildings without elevators.

I miss the times when people wouldn’t stare and feel sorry or wonder. I miss my son walking, running, writing his name, playing with his big brother in the backyard.

I miss the world I knew before learning the word LEUKODYSTROPHY. – FM

Well for one thing you find out who your friends are, including your ex, so that is a plus! I haven’t really missed a lot. Maybe travel because it is hard to travel. I take my daughter everywhere I go, unless she doesn’t want to. No one died and life goes on. Oh yes we disagree and argue but it’s not rocket science. With TBI you roll with the punches, keep on going and let God take care of the rest! – BK

I wish my 13yr old son Jacob, who had special needs, was still here with me. I’m lost without him.
Cherish every moment, good or bad, big or small. I promise you will miss those moments.
It’s been almost 2 months since he was called home to Heaven. I feel lost. Trying to find the ‘new routine’ and discovering this ‘new me’ without him here is indescribable. ? We go to town or a family gathering and I’m wanting to get him out of his carseat and put him into his wheelchair. ? – CB

Being able to leave or just do anything I want. Like walk to work and home. Maybe stop and grab a bite with friends without really having to check in with anyone but when necessary. I guess really just having the freedom of life does that make me a bad person to want that back? – AA

I am just going to say..” All of the above”. The pretty much hermit life after being a public servant for more than 20 years, I feel like I will never have a normal life or relationship again. – TE

I would give me life to have my mom back even having to care for her But I would never want her to have to go down the road we had to walk together again. I did not and do not miss life before taking care of my parents. I do however miss my mom daily and would give anything to have her back and her not to have to suffer. They say it gets better after the first yours the second year was/is worse for me. – MS

Having a life. I can’t just get up and go when I want. I miss out on so much. But, I know my mom gave up a career to have me, so I’m glad I’m able to care for her. But it’s hard! – RB

Since 1992 to present day, Ive been caregiving to my parents -until they passed in 1999/2003-Than I stepped up took care of my father-in-law -he passed Feb 2017, now I’m caring for my mother in-law who Brain Atrophy/dementia, I want to run away and hide from the world, But just a 2 week cruise would help the mind, My husband’s sisters think since we moved in with his parents its our job alone to be here 24/7, We married in 1992, A normal married life would be outstanding, But my path is repeat-repeat-repeat again- write it down repeat. – JF

Traveling, going to stores/ shopping for myself by myself. And more exhausting I miss not worrying about the other shoe dropping. In the back of my mind I’m always thinking ‘here we go again’ with ICUs, palliative care, docs talking about hospice etc. – JM

Enjoying spending time together and having a normal conversation with my husband! Missing our old life! We were childhood friends and ended up married in 2000. 1st ten years was great! The last 7 have been a nightmare!! – AG

Not being able to come and go as I please. Have to always plan for a nanny or babysitter. Have to stay in my home to work. I don’t feel needed or wanted because I can’t get up and get ready for work and leave my home for work, my work is here in my home. I care for disabled brother after we lost our parents in 2009. He is 24/7 care. I only get out if I save money and plan vacation and 80% of them are with him so I really don’t get away by myself much. – SC

My current life style has been my ‘life’ for 52 years, since our first anniversary when my husband had a serious, life threatening accident, coupled with the birth of our first child. This IS my life, the one chosen for me by God and I have lived it to my fullest ability every day since. There is a reason for everything! – MC

I just miss my mum. Looking into her eyes and seeing her. Being able to talk to her like we once did. I miss not being on edge. Not feeling guilt, frustration, sadness and anger a lot of time. I miss my life. But I take each day as it comes and try to remind myself that she is still here – in whatever form and that one day she won’t be. So I try to remain grateful for that. – MA

For the past 2 1/2 years I cared for my dad, mom and husband. Now it is just my mom. I miss having my own life, sleeping a whole night, not having to make all decisions and have to be responsible for all business and house keeping tasks. I have had no time off in 2 1/2 years. I am tired. – RR

Traveling. Being around co workers and talking stuff that doesnt deal with tbi and everything it brings. Been on this lonely and long journey for 11 years, with no help. ? – CB

I have been a caregiver for my disabled children for over 20 years. They are truly the only thing that has given me purpose other than my stupid self. I can’t say I really miss anything about my “old life”…ok…maybe I do miss sleep and being in DEFCON 5 or 4 instead of 1 and 2 all the time (high alert). – JD

Leaving for a weekend away, seeing friends and participating in my volunteer work. It’s exhausting to plan to travel with her which she still likes to do or planning for people to help while I do go (she fights having aids and my siblings…welll…). – RW

Nothing. Larry and I feel better now. We eat the freshest fruits and vegetables and we walk everywhere. We have wonderful friends and our lives are full. The only thing is, I would like to see a couple of former friends. – SH

I don’t really remember a time without Parkinson’s disease in my life. I was 11-years old when my mother was diagnosed with PD and then I met and married a man who was diagnosed just before our 10th anniversary. So it’s been with me for 56 years now. I guess I miss that time in my childhood before PD was a factor every single day. But I barely remember that. – EB

My husband and I care for our teens with autism. I miss going out with him, dating. Taking time for myself without feeling guilty. Other parents dread their children moving out. But our kids never will be able to live independently. – NS

I miss not being responsible for soooo many things pertaining to my mom…I miss going to the mall for hours or taking a trip with my hubby (no vacation for nine years). I miss being able to go to church more often and to actually be active in its programs. – SC

Freedom to come and go as I please alone. Not rushing around because he’s waiting. I want him by my side not in a chair in front of me.

Working 40+ hours a week. Basically just missing my old life. – MB

Freedom – to enjoy our retirement that came just 6 months before I became a caregiver. Freedom to travel to visit our children and grand daughter. Freedom to do whatever we want, when we want and forever how long we want. – LL

I traveled, full time. Had friends all over the country to meet up with. Followed the warm weather. I miss it all. But mostly I miss seeing my son. It’s been over a year. – CH

My farmhouse, 1/4 mi. off road. Loved my house rental on a farm for 9 years. Had to leave my job, move into 55+ apartment housing. – AR

Work, freedom, friends, being spontaneous, fun. life in general. I miss it all. And I will never get these years back. I may as well throw in the towel. I am tired. – JC

My back porch, spending time with my daughter and friends and my house! Just my little boring life most of all! – MG

Normal life, having my husband, not a patient. Friends, you find out who you really friends are. A house that’s a home, I’m so tired of wheelchairs, walkers, etc. – VC

Not having the weight of the world on my shoulders. Being able to live comfortably without worrying about how I’m going to get my bills paid. – BJ

Yes, spontaneity. Also just free time. My time isn’t my own. As soon as I think I have an hour or two, somebody needs me or has ideas of his own. – TD

Miss my mom the way she used to be. My life with her the way we used to be… having fun , laughing, talking shopping, going places…. – MM

Honestly, there really is no going back to the life you once knew. Time to adjust and find yourself again, what you’re going to do with your life, find job.. it’s everything ? – DL

I miss not jumping every time the phone rings thinking ‘this is the call’ and my heart skipping a beat because of the potential ‘bad news’ on the other end of the line. – SG

Being my own person Doing for me. After 25 years of taking care of my husband who has a TBI I feel lost non existent. A part of me missing. – LA

My best friend (daughter(deceased)) and the freedom to take a minute off- silly thing like a haircut.
Mostly just miss my best friend. – BJ

Spontaneity, sleep, freedom from worry, travel, date nights with my husband, spending time with my daughter, resting when I’m sick… – KG

Being able to slow dance, sail in far away places together, walking hand in hand. I miss the man I married. – BP

Written by Michelle Daly

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  1. I think if u want to give up the one and only life u are given. Well do it. It’s our choice. I would never expect my daughter to give up her youth to care for me. I had my youth. She deserves the same.

  2. I miss being able to relax. Since becoming my wife’s caregiver, I have seen some completely terrifying things. And now, they play through my mind constantly . I am always on edge, my nerves are shot.

  3. In my old life I was a mother teaching my kids to make the future a better place. Now I am my son’s nurse, doing one day at a time. I realize that my kids could be gone in an instant so I have no hopes for the future and try to not have feelings for them. My son may be alive but the person he was has died. Everything changed for the worse so I don’t want to grieve like that over another one. I miss wanting to be the best mom I could be.

  4. i miss adult interaction , and the money to be honest lol , i am lucky now i have a part time job one or 2 day’s a week .But it could be worse

  5. dont remember any other way of life to be honest , been the sole caregiver for my son for 25 years

  6. The closeness and caring that my husband showed for me. Sometimes I feel very alone and crave the touches of human contact.

  7. My day trips to the beach, road trips to get out of town.

  8. My husband without Parkinson”s.

  9. Being able to sleep normally, not just one to two hours at a time and jumping up. Having motivation to do something I need for myself . Not being highly stressed and anxious by illness / injury. Having any kinds of ” friends ” . Ignorance is bliss, knowing what I know now can never be unknown etc… the list could go on and on and on.

  10. Having freedom to be able to do what i want. But it could be worse. As a parent I can fantasize sometimes.

  11. We were only married for ten years before getting hit by a drunk driver without insurance. My husband suffered a TBI so that was 26 years ago. In a very disabled state. We have been married longer disabled than not. So I can’t describe our life now. We take one day at a time.For us and our boy now men.

  12. Being happy, going to work, not having Drs appts . Enjoying life

  13. My husband is wheelchair dependent, being able to spontaneous go somewhere is out, we never know what “handicapped accessible”facilities”will be available.

  14. I realize I can make a Difference in Someone’s. Life while. I rebuild Myself.

  15. I miss not being scared.

  16. These hit me hard this morning I can relate to most of them. I also recognize the several stages these represent in my care taking journey. The passage of time has helped me not miss my old life as much as I used to but I find it comes in waves normally around an event or time of year. One statement the neurologist said often when I was mourning our old marriage was, “When something is taken, something is given.” I hated that statement along with “ New normal” but at points you understand they are trying to be positive. However I will admit I mourned for years because I didn’t want a new normal I liked my life. After almost 8 years I can see gifts but I still miss the loss of a robust like full of noise and fun. I am one of the lucky ones I know it could be worse.

  17. 1) Having an income. 2) Having a space to work in for sewing or artwork and not having it bothered or destroyed by dad trying to help me ‘clean up.’ 3) Peace and (your choice of cuss word) quiet. 4) Meditation time. 5) a clean house with NO excess or clutter. My folks were super sized packrats, and I’m still working on it. The move helped, but we still have 2 large storage shed, and a small one for all his suits and VHS tapes. What I don’t miss? 1) Having days where the house was too quiet. 2) The rift that was between my father and myself. We used to bicker and lock horns a lot. After mom died, yah, part of our grieving was fighting like cats and dogs, then we stopped. Part of it was how I stood my ground I was there to work with him. He was my walking partner, my ‘dance’ partner, since he used to professional dance in his high school days. The rest was how the doctors and his cousin Gary told him he was damn lucky to have me there, so be nicer to me. The rest, we worked out bit by bit. Life is too short to fight over this – is what he would end up saying. 3) The lack of sharing my cooking creations or anything else. 4) The absence of a challenge. 5) The distance of travel to see my family. I point this out since I moved from Colorado back to NV to be there for my folks. Even though mom’s COPD made her a real nasty patient for the staff and myself, I would not have missed being here for both of them. As I told my cousin Gary, I’m right where I’m suppose to be. There will always be trade offs for your decisions.

  18. Having my children home and needing my care. They were my anchor.

  19. The innocence of believing people actually cared and would help in tough situations.

  20. I don’t miss much living with my EX. The alcohol every weekend! Smoking cigs every day! Catching him cheating! Dwindled down to holding on to that small amount of time every morning before the monster in him woke up, HA! 1999-2008 though he lives on, may the relationship RIP.

  21. Missing that I did not appreciate being young and attractive more than I really did.

  22. Being thin. I hate this fat life

  23. Caregiving happened immediately after my relationship ended, so it’s been a distraction and feeling needed helps me get through each day. But I do miss my life, friends and home.

  24. Freedom!!! Most people take it for granted…i used to

  25. Wish i had my take care of.

  26. My kids being little.our mom.never be the same.

  27. My kids when they were young!!!My Mom!!
    But Im excited for my future. Im on way to Fla to live. Leaving the past in PA..
    Even my eldest son and grandkids. That was hard but when I visit Ill see them more. A family of 6..4 kids 1,3,5,7…My son and his wife are very busy right now!!
    As a Care giver since 1982-1998 paid….all caregiving of my children and others til 2008….Then Mom 2008-2015…Some nightmare giving to present have been nightmares…
    I will do a little in Fla for the elderly in my future. But Id have to write a book of my learning, the compassion, empathy etc of all the learning litterally from seeing childbirth (not my own) to Death….Ive taken all of it in a possitive light. Ive done alot of FORGIVING….That is the key to truely be able to love thy self and others and be able to move forward with peace within yourself!!!
    Ok..loosing my thought process on this phone. First purchase in Fla will be a nice yet small laptop…lol
    I even forgot the question now..lmbo..I actually just woke up trying to get the chronic pain under control.
    One of the BIGGEST of My Experience during my Mothers Caregiving is….FORGIVENESS!!! We all have that to do no matter what the situation!!
    Ill try to share something beautiful I encountered by someone so beautiful inside and out. There are alot of those kinds of ppl….but they all arent equal to Mother Theresa!!!
    I would need time to write out what this beautiful woman fron her heart and soul did for me. What she did is etched in my heart to my soul. Her name is Carmen….
    After my travels and get settled a bit I will come back here.
    Ill start my Post..” FORGIVENESS”. Then go from there.
    Have a lovely day to all our Caregivers and Families.
    Dont give up hope!! 2 yrs and 3 mths after My Moms passing Im on my 2 feet moving to Fla…8 boxes shipped and a full car that you can see out the windows…Onward..❤
    Ps it helps at the end of this destination Ill be with my best friend. Ive waited 17 long yrs to get here..with no regret at all about anything!!!
    Be Well..❤
    Type Care and see what you get incase you didnt know!! it!! ❤ Xx

  28. Travel, freedom and seeing my son regularly. He’s 2500 miles away now.

  29. The respect I used to have for certain friends and family. Care giving is a very tough road especially if it is long term and chronic. I am disappointed at the lack of help from family members and at the lack if support from friends. As with anything I need to focus on the few good people in my life. A caregiver support consultant said to me “Maybe some people do not know how to show compassion or how to caregive. She said I obviously know that. I said that is b.s. I did not ask nor seek out this. Did not ask for my husband to get colon cancer and a young age, be sick four years before he died leaving me with our young child. Did not ask for aging grand parents and now my parents to need help. Did not ask for a mother-in-law whose son (my husband) died and no other relative would help her out as she suffered from dementia except me. Yes I miss the family who did not help out. I miss the the people I thought were friends who rarely even ask how I am doing or do not consider me at all. I could use a pat on the back. I could use a laugh or two and some fun I used to have with these people. But I will concentrate on the good ones and thank my lucky stars I have them. The others just bring sadness and disappointment. For I was good to them-listening for hours about their troubles and helping where I could.

    • I haven’t been at this long, being primary caregiver. But it’s lonely and I can relate.

    • I understand completely. There are some tho, who want to come over to help you out and then you start noticing a lot more room, and where did that go? Can’t find this, can’t find that.. Or when someone else comes by n hang out with four kids, a teen, tween n twin toddlers n relax. You end up spending the weekend cleaning n listening to toddlers on sugar. Not our grandkids, but friends.
      I miss being able to leave n go riding. I miss my motorcycle n riding with my hubby.

    • This! This is exactly how I feel. In fact, you worded my feelings better than I could have.

  30. The ability to go somewhere and not worry about being home before it gets dark.

  31. I miss my family. Have lost a brother, sister, mother and father. I miss having family. I helped care for them all and would do it again just miss having them.

  32. Jumping in our jeep and just taking off!!

  33. I’m a 24/7 caregiver to my 97 year old mom at her house…..starting my 5th year
    ….i miss the life I had with my husband and sleeping in my own bed….i do get to see him a few times a week and we cherish that time….

    • Been there. I have no advice, but I do understand.

  34. Raising my young family only.

  35. Freedom, flexibility, friends

  36. Being able to talk to my mom and have her as my comfort and friend.

  37. Eveything!! My apartment, job, living in the south vs being in the north, my friends, not being micro-managed.

    • It takes a toll. Especially when its a parent. You feel like a child again

  38. I miss being able to plan a weekend away without begging for someone to cover me.

  39. My husband and I used to be able to grocery shop together. Sounds like a petty thing but now that we have his dad here we both can’t go out together unless we have a sitter.

  40. The long walks we used to take,walk talk and share our work days together.

  41. Me. Fighting hard to rebuild life in the midst of it. Caregiving is an octopus of a zillion emotions and situations that one can easily loose your identity in. Somewhere is the us that makes me and hubby us that spark of me must be kindled, or the rest will crush me.

  42. The man I married is gone. Freedom is gone. Everything revolves around his needs 24/7/365.

  43. Ability to go out and socialise. To have Fun, laugh and have friends

  44. Whoever SS is got it exactly right.
    “The hardest part is falling back into the life you once knew once family has passed and the caregiving role is no longer. Honestly, there really is no going back to the life you once knew. The only option is to rebuild, and it takes a lot longer than the grieving process itself.
    Doesn’t it feel like we grieve the loss of our loved one AND the loss of friends we no longer keep in touch with AND the loss of a career, maybe even the loss of a house after having to sell it. The grieving process is completely multilayered. Yes, we miss our loved ones, but it’s so much more too. – SS”

    • Afrer 3 years I know two things…I need to work on myself for onces and I also need to take it easy on myself.

  45. My own identity and the way things used to be.


  46. My daughter. She was my life and soul mate.

  47. Actually, what I miss most, is the son I raised.

  48. My productivity and organization skills.

  49. I miss my life with the man I married. Its not the same. His needs are more of a senior stranger more than my husband. Its sad no romance no compassion between man and wife, I’m his caregiver, the poa, the manager of his life. I even look at him and miss him even though he’s there. I miss him and his zest for life.

    • I feel the same. I miss him. I miss us. Little sleep, his displaced anger, little respect for me, no respect for my wants. Until you’ve actually lived it 24/7, you haven’t a clue. Some days, like today, the deep sadness just overwhelms me. God be with us all.

    • I feel the same…missing him…missing us. I also feel that deep sadness…sadness that consumes you at times. Sadness that I must overcome so I can continue caring for him. I love my husband with all my heart and will be here for him…forever.

    • Miss my man as well❤️very strong women here!! We can stand through any storm

    • I am not presently married, but my life partner, as we agreed to for good reason, we’ve known each other since 2001, really good friends pretty much from the start, though he can be such a brat. LOL. He became his mother’s full time caregiver in 2008, which was a good two years before I became my folk’s. His mother has MS. She is now 90% bed bound. She has him carry her outside daily for a break from the bed. When JD and I realized we were romantically a match, the crux was – how do we handle this and still be here for our folks? I decided to have us make our own vows, which we do redo and modify with our parents’ changes, based off of the handfasting. If we did the official marriage path, we would expect ourselves to be under one roof, etc. It would make what we can managed be a complete mess on so many levels. I miss him hardcore since we are both house bound at this point. I don’t know if it helps, but he and I keep finding ways to hang out and play. Our ability to talk to each other through voice is Skype. Sometimes for up to 8 or more hours a day. Even if, yes, we are away doing something else, that call stays on. Unless I need to make a real phone call through the program. We have back up texting through FB messenger and Steam. I’ve had CNA training, so I’ve shared my experience and knowledge with him so we report to each other before we watch movies on Netflix from our homes. It is so nice they came out with that family pack. I even gave one of the slots to his parents so they can watch movies together. Through Steam, we play co-operative games to keep our skills up to see, yes, we are still a great team together, and yes, it leads to jokes and other things you need to have to feel in touch with one another. I don’t know if any of this helps, but I hope it gives you ideas how to shift things around to make room for each other and communicate and keep finding ways to play and such. You are working hard for your family, and some times, if you two can find it, how you change working together is enough to help you keep it going. Our rules are simple: Protect what is mine. Take good care of the family and yourself. And cover each other’s back to keep the other safe while doing so. This is a team effort as well as a family effort. Again, I hope what I’ve shared helps you. It distresses me when I hear bruised hearts feeling they had to choose one family member over another when this is not really what you are doing. Yes, this is difficult work, yes, it is time consuming, and yes, I miss JD like mad. We have not been intimate for four years in the bedroom. Yes, I do miss that. He and I still seem to gain intimacy in other forms, even with the forced celibacy. Changing how we need to be there for each other and family really helped us, renewing our vows to be One while being there for family. Please, don’t give up on each other. Lots of hugs.

    • I mourned my husband for years looking right at him. The worst for me was taking a shower and smelling his soap, which would bring back memories. I must have cried in the shower for 2 years. I actually use the phrase my old husband and new husband. Our lives are carved in two pieces before and after the accident. I hope there is a chance you will get some back. ❤️

    • Exactly the same. Married almost 4 years ago, diagnosed 3 1/2. WHO DID I MARRY?

    • I miss my husband like he was. I miss walking and holding hands everywhere, anywhere. Going on trips out of town, to the store. Running and getting into the car. Not worrying if it’s raining, because now his chair will short out. I am grateful that his mind is still good. That his voice is still here. I just miss us planning for things. Having company. Kids everywhere at our house like before. Miss him sleeping in my bed. I miss sleeping.

  50. I never looked at it as having an old and new life .. just life with a time for all things in their own time ..

    Being a caregiver taught me to enjoy and be thankful for each day .. as much as possible ..

    Was it easy no .. not at all … cried , lost sleep , exhausted beyond belief , worried , sad , challenged by discharge planners at hospitals and nursing homes , angry at circumstances involving health care
    I’m sure all of you can relate..
    At the same time happy for progress my hubby made after a stroke , happy to have him home , happy to have been able to physically and mentally help him all those years..
    Thankful for the good therapists and home care nurses and CNAs
    And now
    No regrets and taking it one day at a time in life ..
    Not a new life or an old life just a life I’m living with a season for all things in their own time

    God Bless you all

  51. Stability. There is what little bit there is now and now that I have accepted that, it may be turned upside down again.

  52. Being a care giver changes your life forever. When you are responsible for another’s happiness and well being for life. Can’t imange any other life. It is what it is.

  53. Having a social life, traveling some and working

  54. I worked full time, traveled for work, took care of my dog, went to college at night while taking care of my mom (she was in low care foster home). I can’t believe I had so much energy. Couldn’t do all that today. I have no energy anymore.

  55. The fact that even after caregiving, you will never have your old life back. It changes you.

  56. I guess I’ve never had one to miss


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Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.