My mother had Lewy Body dementia, COPD, vascular/circulatory issues, and a couple of other conditions. I have been her primary caregiver for 10 life was basically on hold, but I didn't think twice about caring for her. After her passing, it hit me that all of the tasks I used to perform daily are no longer needed. In the subsequent days, I have constantly been reminded that "I won't have to do this anymore...". It's almost like I have a long list of tasks and duties in my head that line by line is being erased, until nothing is left but a blank sheet.

In a span of about 2 weeks, my Mom's condition declined drastically; she was no longer able to support herself walking, barely ate or drank, and the dementia was taking a firmer hold. My sister and I decided that we needed professional help with her care, so we arranged for in-home hospice care. The team we had was phenomenal. She survived for 6 days before peacefully slipping away in her sleep. This was the best possible outcome for her, given the number of health issues she had.

Although I am at peace that she died so peacefully at home with us, and will no longer suffer, the question that looms large in my mind is...what do I do with myself now? I loved that little woman, and we had such a wonderful bond...I miss her so....what do I do now?

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I'm very sorry for your loss. Be gentle with yourself and allow yourself time and space to go through the grieving process. Get some rest if you can.

In time, you might find a new "normal" as far as being able to do some things you enjoy or pursue some goals that maybe you didn't have time for while being a caregiver. It will take some time though most likely. It's normal to feel "shell-shocked" after the passing of a loved one, especially after being a caregiver.

Grief counseling might help you through this time, and your hospice agency may offer it to you free. Of course, we on here are here for you for support as well.

Hugs, just take it one day at a time.
Helpful Answer (11)
Reply to FrazzledMama

Allow time to grieve, then start rebuilding your life, one step at a time. Reinvent yourself, it is time for you to start living your life. So very sorry about your loss, take care!
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Reply to DollyMe

You grieve. And you slowly adjust. And you get help if you need help. And you slowly reach out. There are groups for grieving. There are folks alone in care facilities who would dearly love a visit from someone with as compassionate and loving nature as you. I am so sorry for your loss. When every waking moment is dedicated to someone else we forget who we are. It will come back to you. Reclaim joy and I don't care if that comes under gardening, reading, volunteering to foster animals in home, walking, knitting, learning a new language, or what.....give it time. Give it time and time and more time. But for now remember all she was, all you did you ease her. Take pride in it. Take joy in it. Grieve it and cry. Look on each day's feelings as a weather front coming through. No matter sunny or storming, it will be leaving soon enough. Hugs out to you. So sorry for your loss.
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Reply to AlvaDeer

It's human nature to say "I'm sorry for your loss." I am, but will share my valuable lesson. I asked an old widowed cousin of my moms "when did you lose your husband?" She patted my arm & with a beautiful smile said,
" I didn't lose him my dear girl. I know where he is!" That was 24 yrs ago after my son passed away at 34 yrs. of age. I answer that question still asked of me with the answer she gave me. I knew this " old" lady was a woman of faith. I am now an old lady and rely on my faith. I grieved for my mom, my dad but I was younger and perhaps stronger. My sons passing was unbearable grief! What did I do then? Whatever I felt like. I kicked the dryer a few times, I'd get in my car alone go for a drive , sob,
scream, whatever I felt. We all deal with loss our on way. It's ok. Your pain is your own my/ others pain is ours. I don't know how you feel. We own our own feelings. Take one day at a time. It gets better, I promise. Mother's Day is still not easy ( my son passed away the day after mothers day 1995) his birthday, the anniversary of his passing, the Holidays still tug at my heart. However long my grief lasted I finally by the Grace of God I survived. I realized I was blessed to have been able to take care of my boy the last three months of his life spent in hospital. I think of him and the happy times we shared. He had never married nor had children so
he was mine, all mine. Selfishness? No, I counted it as another blessing.
In closing know that you will be in my prayers. Keep posts up through your new life chapter. There is lots of love and great people on this site. We can vent, share and oppine without crutizism or judgement. 👍🏼
You didn't mention other family or friends. Caregiving takes a lot of our time and we lose touch but our family and or friends come through when U are ready. I'm now caregiver to my husband. He has vascular dementia.
Five years ago for a brief moment I thought , not again! Today I've learned much on this site and others. How to deal with the changes in him, help in coping and to not forget to take time & take care of me. I'm now 77 yrs my husband 78. I miss and want my old Ed which is not there but another blessing & I don't mean to sound flip or unkind, but I can vent stuff to him about family drama, bills, so much to do that he can't anymore , cry etc., he says " I'm sorry honey, I'll drive you ( he hasn't driven in three yrs. ) I'll help you. ". I do get hugs and then he forgets. So I'm not adding to his issues. My daughters and adult grandchildren ask how I do it? My answer " only by the grace of God!" Sometimes I start to think about what's ahead but won't go there for long. As I'm sure you know, some days are harder than others but thats when I try hard to take one day at a time, can't nor want to control our future. Can't dwell on the past , we don't live there anymore. Viral hugs to you and never forget you are not alone. You will survive!
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Reply to Nanabinx

I'm in the same situation as you are. My mom passed away 11/1. I can imagine an amazing reunion with my mom and dad "up there"... but still I feel lost. My dad, the Army man, if he were here now, would tell me to "soldier on!". But it's hard. I didn't realize how much time we spent taking care of my Mom until she is no longer here. The holidays, in particular, are going to be hard. We figure we keep some traditions and incorporate some new ones; what they are, we have yet to figure out. I guess it just takes time. Hugs to you.
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Reply to Lifeissohard

I know how you feel. I lost my Mom three weeks ago. She passed away peacefully in a beautiful hospice setting. She was 99 and after a fall, there was no fixing her anymore. I miss her so much. The tears just come and I can’t believe she is gone.
The holidays are events I will just have to get through but I intend to incorporate her favorite holiday things into mine and she will be with us in that way.
I will take one day at a time and cry whenever I feel the need.
My condolences to you. I am with you in this.

My support and sympathy
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Reply to Helpme1

Cs1stDaughter: I am so very sorry for your loss. Please come back here as we are your support system. There are MANY longtime posters on this forum who will gladly lift you up in prayer in your grief. What you can do with yourself now is something that I did for myself when I left my childhood home where I had moved in with my late mother - I stayed on this wonderful forum to help others, if I could.
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Reply to Llamalover47

I'm very sorry for your loss. It takes time. Some longer than others. If and when you feel you can handle it, volunteering can really help. Meals on Wheels for me.
or maybe if you like dogs and cats something there.
It's not a sure thing but it might help.
Take care dear 1st. hugs
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Reply to Rbuser1

Cs1stDaughter, I'm sorry for your loss and empathize with your question of what do you do now. Since my dad died in my arms on 3/18/2019 I'm still struggling with what to do now (after 5 years of primary caregiving for him, plus another 5 years of secondary for both mom and dad). While my overall sense of loss has decreased in 8 months, there are still daily reminders, peaks and valleys, and second-guessing of 10 years of past decisions. It sounds like you did well, should have no second-guessing, and day by day will find "what to do now." You've already gotten some good practical advice to which I have nothing to add, but just to let you know that when caregivers' jobs are over, we do slowly begin to find ourselves. Kudos for a job well done and best wishes for your future.
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Reply to bicycler


this sounds simplistic and really is simple but worthwhile.

try a senior center or hospital. Some towns have something called rsvp that has multiple places needing volunteers. Or see if the chamber of commerce or city hall knows of places.

you can volunteer the same place every time or a different place every time.

i volunteered for years until i got a job and really enjoyed it and the people i met.
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Reply to Betsysue2002

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