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My mother had Lewy Body dementia, COPD, vascular/circulatory issues, and a couple of other conditions. I have been her primary caregiver for 10 years...my 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.
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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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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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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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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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Sorry about about your mom. Sounds like she was very special.

Is there an interest you would like to pursue maybe? Give yourself time. You will figure it out.
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Dear Cs1stDaughter:
 
First, you are not alone.  Your feelings are normal.  You are facing a loss...huge loss.  Your routine is not the same.  The things you were used to are now totally different or gone.

I lost my mom after spending 13 long nights and days in a hospital hospice.  I was holding her on Christmas day last year when she passed at 3:40 p.m.  It was THE hardest thing in the world.  My routine is now different, of course, but you will get used to doing things differently.  Your mom is at peace now...no more suffering.

I find that dealing with your emotions helps, instead of hiding them.  I wanted to crawl in a hole and not come out - I'm ashamed to say.  I still have those feelings but, not as much as I did.

Life has changed for you.  If you ever need to vent or talk, I'm here for you.
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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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Volunteer.

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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Cs1stDaughter
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!
Nanabinx
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Cs1stDaughter,
I am very sorry for your loss. Thanks to a special Daughter who Loved her Mom. You were very luck to have Mom around and you did a special *BLESSING FOR YOUR MOM* You will get used to her not being around. My Day lived with me last 16yrs of his life and I am so glad he was with me. I miss Dad but I know where he is and he is not suffering. My Mom passed before I was 6 yrs old so I only had Dad. BLESSING & Hugs too you. Condolence and take care of your self. God Bless
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Give yourself time off - except for paying bills- for a couple of weeks. Engage in whatever activities help memorialize your relationship: funeral, memorial, celebration of life are the usuals, but also take time to do "fun" things that have meaning and remind you of LO. Enjoy music or movie or book your LO enjoyed. Take walks outside, through art galleries, near schools or in any joy-filled place that reminds you of your LO. Give yourself permission to say "good bye" in a way that is meaningful for you: a poem, a song, a letter, a prayer, a personal ceremony...

When you feel "up to it", go through your LO things to find new homes for her items. Women's shelters can always use clothing. Jewelry can be worn "as is", revamped to your style, or incorporated into décor. Paperwork will probably need to be held onto for at least a year. Donate or sell vehicles and assistive devices. Letting go of these items doesn't have to be immediate but probably done within the year.

Then, consider what have you been putting on "hold". Time to rediscover those activities and relationships.
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My sincere sympathies. My friend passed in Mar. Even though he was in a SCF, I was there 7 days a week for about 7 hrs a day. Your life changes after they pass. I can tell you what I’ve been doing. About 2 weeks after the funeral I took off for FL for a month. I let my hair grow for the first time in 50 years. I go to morning mass 3-4 x a week plus Sunday. I go out to breakfast with people I have become close to from church. I’ve taken up bike riding (hadn’t been on a bike in over 40 years). But I’m up to 18 miles! I still go back every week to his SCF to help others that are on his floor. I still read these daily emails. I read a lot. I have a friend who is deaf and needs an advocate to help her with Drs etc. All of these eat up your day and time. I have found that I cannot drop caregiving. It’s in my blood and it really helps me to be helpful to others. Everyone is different. You will find as time goes on things that will be meaningful to you. Go at your own pace. Be peaceful with her passing. You are blessed for all caregiving you have done.
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1stDaughter.
So very sorry for your loss.
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You try to keep busy. Sit and stare out the window when you want to. Join a carer group even though she has passed and talk about it. Get ready for a big slump when your mind and body match up with the realisation that they are no longer required to be on heightened alert 24/7 and start to (or try to) wind down.
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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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I'm so sorry for your loss
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One thing cut all ties with Hospital, NH,she dealt with. Strange as it may sound, it may make coming to terms with her death, easier
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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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I'm so very sorry for your loss. I know how you feel. Don't try to figure it all out now. Give yourself time to just be and rest. If you feel like you need to do something...set a couple of goals to complete before the end of the year. Then, start thinking about what you want to do for yourself in 2020.
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I’m so sorry for your loss...maybe you need to....now that you have the time, talk to Professional Therapist? I know people tell me all the time to go to one, but I barely have time for back therapy I need...I’m hoping you will eventually find something you are passionate about to give you joy. Hugs 🤗
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I'm very sorry for your loss. You loved her. You will grieve. If you feel like you need to speak to someone then do it. Do what feels right for you. We all grieve in our own way.
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Sorry for the loss of your dear mother, Cs1stDaughter. Your mom was so fortunate to have you as primary caregiver and your sister helping out in her later years. I am glad she had a peaceful passing with both of you present. She is in a better place, and I believe someday we will all join our loved ones. That gives me comfort. Please take one day at a time and get some well deserved and needed rest. Take things slow. Keep those special memories of your dear mother close in your heart. Thank God you were able to care for your mom the last ten years of her life, that is a true blessing. My thoughts and prayers are with you during this most difficult time. Take care and big hugs to you!
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I am sorry for your loss! Right now you should rest and baby yourself. Perhaps think about what you would like to do-hobbies, volunteer, go back to work or perhaps take a class. As someone stated just take one day at a time! Be kind to yourself!🙏🌈

Hugs!
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