My husband is dying and I don’t know myself
rediscovering my identity after losing myself to being a wife and mother

I spend a lot of time thinking about hospice care these days.

As my husband’s health declined it was as if we could hear the clock ticking more loudly. All the plans we’d made for growing old, the life we’d imagined, was not going to happen.

If our lives were a movie, we’d be going bungie jumping right now. Unfortunately, not all of us will be healthy enough to travel the world and live it up until our last days. My husband’s decline was slow at first and has sped up more recently. He can barely muster up the energy for doctor’s visits. The places we have not yet visited and the things we have not yet done will not be done. That door has closed already, while we were too busy with work and kids and everything else. The opportunity slipped away without us even noticing it.

Now I meet with the hospice nurses. We talk about ways to keep him comfortable. But they’re exceptionally kind and want more than simply managing his pain. They ask me questions about him. They ask him, too, sometimes when we’re together, sometimes when we’re alone.

What is it that makes him ‘him’? What gives his life meaning?

And then they think of ways to keep those threads alive. He can’t do what he used to do, but they come up with creative solutions so he can still participate in his life as best he can. We take him on excursions, carefully planned and modified to allow him to enjoy these final days.

He does not have to lie there in this hospital bed set up in our dining room and wait for death. He’s spending that time doing the things he enjoys, be they meaningful talks, beloved activities, or just playing video games with our sons.

It’s made me question what I’ve been doing these past few years. Because while I can answer these questions for my husband — what makes him ‘him’, what gives his life meaning — I can’t answer them for myself anymore.

Who am I? I’m a wife and a mother. My whole life revolves around other people. It did long before he got sick. I’m not sure my life ever revolved around me, but once I got married and the boys followed soon after, I stopped even considering myself.

I knew it when they were little and they’d ask me silly questions. What’s my favorite color? What’s my favorite hobby? I have no idea. But those things stopped mattering when I left elementary school, so I didn’t think much of it. Kids are so obsessed with favorites.

My husband doesn’t have a favorite color, either, but he has hobbies he’s passionate about. He’s always had friends with ties beyond a shared property line, the proximity of their desks, or the age of their children. He’s had interests that I know only the faintest things about. My life has always just revolved around him and the boys. I know all of their wants and hopes and dreams, but I don’t know my own.

The thing is, my husband has been a great husband and a wonderful father. He doesn’t love the boys any less than I do. But he kept himself while raising them. I lost myself along the way.

Soon I’ll be a single mom. I want the boys to have a parent who’s a full person, not just a vessel for them. How will I go on after my husband’s death if I don’t even know who I am?

As my husband tries to enjoy his last days with us as a family, I’m trying to find myself.

Anonymous

Written by Guest Author
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72 Comments

  1. My heart breaks for you. I know how you are feeling, my husband has been in a vegetative state for over 16years. He lives at home with me, I do have help most days for 12 hours. But the question is who will I be after???

    Reply
  2. Yes, not everyone is the same. Just letting people know what may happen and that it’s not their fault, so not to take it personally. My husband felt so bad when my mom started giving him dirty looks. I had to keep telling him, its the dementia.

    Reply
  3. I cared for both of my elderly parents, in my profile picture. They both passed weeks apart very recently, Friday is the funeral. I don’t know who the hell I am anymore either. It’s a terrible process to go through.

    Reply
  4. I’m a caregiver. If you know of someone that needs care, please contact me. I also cared for my mom whom had dementia. It’s an awful sickness, they can be really mean at times, forget who you are. But just hold them, talk to them about what’s going on in your life, and pray for a cure. And always have patience.

    Reply
    • I’m sorry for what you went through. My mom has dementia and I’ve been her caregiver for six years. She is not mean at all…ever. I think it depends on what part of the brain has been affected. She’s never forgotten who I am, possibly because she lives with me. Perhaps that time will come. It is the hardest and the best thing I’ve ever done and I wouldn’t change a thing.

      Reply
  5. I care for my son who has Cerebral Palsy. He is 34 years old. It is difficult to find your life while caregiving. I have finally found it some whst through the support of my husband, family and friends. Going outside my comfort zone and trying to separate myself from the caregiver side for a while. It isn’t easy though it is so necessary. Hugs to all us caregivers.

    Reply
  6. That question I can’t answer

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  7. I agree . It is a hard life and we need hugs !

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  8. People in this situation need support of friends, relatives, taking up a new hobby etc. Those who care give for others deserve the best life has to offer.

    Reply
  9. I cry as I read this because until you really do you feel so alone like nobody understands and yet here we all are so many ❤️ we are the brave the weary the broken hearts that will go on !! Because we know how to be a caregiver and you have to be strong real strong to be the caregiver ❤️ I will keep you all in my prayers and I know with being a caregiver you can get angry at god and even wonder or stop believing I will be the person that believes for you and pray for your heart ❤️

    Reply
  10. I can relate. I cared for whom ever needed me but I lost myself along the way. It’s time but it’s not easy to flip the switch. Baby steps

    Reply
  11. I think the person/s doesn’t even have to be dying to lose yourself. It’s a lot of hard work, emotion, down time, stress, weight of the world.

    Reply
    • Here lately even when I try to go have some fun people tell me I look stress, I try so hard not to be.

      Reply
  12. Wow I wonder how many of us feel this…?

    Reply
  13. We were caregivers for over 20 years and it has been three years now since our loved one passed and we are just now finding ourselves again. It has been quite a journey but we would not trade those years of caring for anything. We have so many memories and they have helped us through a very rough time, Things will get better. Praying for you.

    Reply
  14. Love the honesty… There is a book with the title “I Am Not Me Without You” I have thought so much about that while raising our large family and being the caregiver/advocate for our 2 chronically ill daughter’s. Who am I? I am wanting to find out.

    Reply
    • You are a caregiver ❤️ but you have to get a break somehow someway sometimes my teenagers after seeing what I went through on a thanksgiving break I had them help me it wasn’t much because they were not a nurse or a professional caregiver for hire they were and are teenagers ❤️it’s only something you can truly understand once you are one god bless you and your two daughters you are loved and in my prayers god bless

      Reply
  15. I was a caregiver for 2 family members in my lifetime first time was my older sister and then years later our mom and I have my own health issues.

    Reply
  16. The weeks following our adored Mum’s passing I would stay up all night on Face book and find out information about death and everything that went with it.i also found beautiful posts on grieving and how we,as their caregivers,are struggling…This is one I found and it has kept me sane…
    We talk about them,not because we’re stuck or because we haven’t moved on,but we talk about the because we are Their’s and they are ours and no passage of time will ever change that……….we are them and they will always be us..look at your children,look at your hands..we are their daughters..

    Reply
    • Remembering my mother Alzheimer’s last three years in bed holding her hands lots now I look at mine with heartfelt memories and recognition

      Reply
    • I know Susan ,please find comfort in that ❤️

      Reply
  17. I was the care giver of my mother I had my three children and me it was the hardest thing I ever did in the end when I lay against her and waited for her last breath reassuring her I wish I had more patience and did other things different but the reality is you do your best .. and they know that god bless all the caregivers it changes you forever and makes you understand more than you want and feel pain and cry whenever but you do heal it never goes away it just gets more bearable and know your all in my prayers

    Reply
    • yes. I was also a caregiver for my mother until her very last breath…I had the hardest time to let go of her knowing that she’s no longer in pain & being my guardian angel for me & my kids. It’s been 10 yrs. God Bless us all caregivers!

      Reply
  18. I left a job and I have been caring for my father for 7? years. Finding out who I am is OFF my radar right now. I do wonder about where I will live after

    Reply
  19. When caregiving for a long stretch of time we do lose ourselves, once we are either no longer caregivers or become overseers of someone care it’s very hard to get back into the real world. But slowly but surely it can be done. Just keep that in mind. God bless you & your loved one!

    Reply
  20. I took care of my mother for the last five years of her life, and was with her as she took her last breaths…..being there for her was all i had left in me….now, I take each day with grief all around me….

    Reply
    • Grief becomes part of us Michelle yet we still are able to stumble along..and I find when I feel like I will fall a stranger,friend,neighbour says something out of the blue to me and I know I am not alone in our grief.Each day has it’s moments.. Please know you and so many are in our thoughts .God Bless.❤️

      Reply
  21. This question is for all caregivers of anyone including your parents …. who will I be after they die ?????

    Reply
    • You will be you a different you a sadder you but please know that those that pass do not wish for the rest of our life to be lived in sadness ❤️ it’s hard I won’t lie it’s lonely try to keep busy and around people especially don’t isolate it’s miserable I did it for a year plus I just was so lost and now I’m finding myself again because I know my parents would want me to live life to the fullest as I did when they were alive ❤️

      Reply
  22. Yes it is. When mine died there was a form of relief but then you move into that grief. Anybody who is or has been a caregiver is a strong individual so pat yourself on the back

    Reply
    • Yes we are strong, God bless you!

      Reply
    • We truly are but don’t really know it till it creeps slowly back into us again.God Bless you ❤️

      Reply
  23. My husband has ALS, severe cardiac disease (13 stents), and stage 3 kidney failure. I have been his caregiver for 13 years, and I have just been diagnosed with COPD. Do not know who is going to die first.

    Reply
    • Take very good care of yourself & you can live a long life. My dad lived till 92 with COPD

      Reply
    • I just lost my wife to ALS. Please try to get as much help as you possibly can.

      Reply
  24. My husband has cancer and Parkinsons so i don’t know how much longer i have with him. And that scares me.

    Reply
    • My husband also has cancer with a “poor prognosis” been dealing with it for over a year now….I’m scared too Shelly. But I feel guilty because he’s 65 and I see so many young people dealing with it. I try to reason it out by saying “we’ve had a good life” …. problem is….we’re not done yet O:(

      Reply
    • Don’t be scared you will go on ❤️ you will grieve and live and find a reason to smile everyday I believe that they leave the psychical world but they never leave our side ❤️ so enjoy what time you have how weary you can become still enjoy the time ❤️

      Reply
  25. This is what it becomes. I do not know myself these days either.

    Reply
    • You’ll find yourself or reinvent yourself as who you want to be now. I’ll keep you inmy

      Reply
  26. My mom died 4 years ago, I just was her caregiver 24/7 for 9 years, while she was alive I dreamed of things I would do after she was gone….travel because I hadn’t ever left her side, long bubble baths I could take relaxing without worrying about her….so many things..but its been 4 years and I still can’t recover…. Its like I can’t wake up from a long nap I so longed to take…..I miss her

    Reply
  27. My mom died now I start over Its tough

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  28. You have no idea what a comfort it is to find people who are going through the same difficult journey; and I am so sorry that we’re having to “gather” under these circumstances.

    I’m 56. My mom came to live with my husband and I after the death of my youngest brother to cancer in 2010, and my grandmother eight months after that. My mom has multiple medical and mental illnesses, but the most limiting/profound is a recent diagnosis of Parkinson’s.

    And then, my husband was struck with 2 heart attacks, and severe peripheral vascular disease and heart failure 3 years ago. He’s completely disabled and was extremely sedentary before the disability at 63.

    And here I am … I’ve completely lost my identity. The rare time I was able to meet my two closest friends for dinner, several weeks later, my best friend confessed that they were both worried about me, as I just wasn’t myself. I have nothing even remotely interesting to talk about, nothing feeding my brain but worry and fear …

    Does anyone here have a solution, or suggestions so we don’t die on the vine?! …

    And here comes the guilt and feelings of selfishness for thinking of myself for a moment in … 3 … 2 … 1 …

    Reply
  29. I can relate… I’ve always been there for my family..My husband,kids… now I have a uncle to care for… grandkids.. I’m nobody… just here for my family is all I can be..

    Reply
  30. I’m only 4 1/2 years into caregiving for my mom, just turned 30 and this thought plagues me.

    Reply
  31. Not many could do what you do, not sure I could. So be kind to yourself and know you are entitled to feel lost once in awhile. Just know anyone who helps another as you do is an Earth Angel.

    Reply
  32. That’s me. And when I do get the chance to go do something I feel guilty and uncomfortable because I’m out doing something and he’s home. I don’t know how I’m going to do it when he’s gone. I haven’t been me for a very long time.

    Reply
  33. I struggle with the guilt of thinking about myself when he’s going through something this huge. A few hours off a couple of times a week means so much and yet I secretly crave whole days and nights without that fight or flight feeling so many of us carry daily. We must learn to be as patient with ourselves as we do our loved ones

    Reply
  34. I don’t know where to begin, but I can so relate to her situation.

    Reply
  35. Wow this sounds familiar. Going on 23 years looking after my daughter.

    Reply
  36. 9 years and I take care of 2 my husband and. 83 year old Brother in law. I quit existing long ago. I also have Fibro. .. but it doesn’t matter when I am sick. I had heart attack last year. Next day I was back at it. I have no idea who I am …all friends family left the picture years ago.

    Reply
    • Your comment triggered a rush of tears. I so wish I could help, but know that there is nothing I can do. It takes everything I have, and that is so little, just to get through a day. I understand, truly. And I am one of the “lucky” ones with some family support and enough (insurance) money to have some paid help. I have some money put by. What would it take for you to have an afternoon all to yourself? PM me.

      Reply
    • 25 years of caregiving and I to suffer many ailments now…but as I’m not in a wheelchair no one really understands invisible pain

      Reply
  37. Oh my. I found myself blurting out unexpectedly to a friend that I didn’t know who I was any more. I am 13 years in as a caregiver, and my own health is failing.

    Reply
  38. Wow now that would be me 🙁

    Reply
  39. This article so mimics our life! This is the first time I have read anything that has come close to our experience!

    Reply

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