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

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