Picking Up the Pieces After the Person You Have Been Caring for Dies

When you are in the midst of being a caregiver you build your time and your life around managing the caregiver tasks that need to be done. As a caregiver for my dad I know my schedule revolved around visits to the doctor, the hospital, the assisted living facility, and ultimately the skilled nursing facility where he died. His care and optimal well being became the center of my life and thankfully my husband and daughter understood. The role of caregiver superseded that of wife, sibling, mom, friend, speaker and author.

Many caregivers put the needs of the person they are caring for above their own. That is why so many caregivers experience burnout. When we are in the midst of caregiving we often see the person we care for changing in many ways as they move closer to the end of their lives.

Often we go to a place where we try to imagine what our lives will be like without them. This is called anticipatory grief.  This is our way of emotionally preparing for the loss, the death of a loved one. It is a painful vision but it is our mind’s way of determining ways to cope with the devastating loss of a loved one. Sometime’s these thoughts occur on especially challenging days. It is not unusual to have them and it is nothing to feel guilty or ashamed about.

The actual death of a loved one, even one that was expected, can leave us overwhelmed and immobilized. It becomes a reality that we are forced to face. This grief can encompass many emotions including, sadness, anger, emptiness, relief, uncertainty about the future. Your body grieves too. That grief appears as inability to sleep, sleeping too much, loss of appetite, eating too much, stomach problems, tearfulness, body aches, and an inability to focus or think.

Each of us grieves in our own unique way. There is no right or wrong associated with grief especially after being a caregiver. The challenge is suddenly your attention and focus must switch from the person you cared for to yourself. Many of us do a worse job of taking care of ourselves than we do of taking care of others. So what can we do to cope after the loss of a loved one and our identity as a caregiver? How do we move on? Here are some tips to take the next step:

                      

  1.  Talk with someone you trust about how you are feeling. Keeping grief inside can harm you in many ways and can intensify the feelings causing more intense physical and emotional harm. Allow yourself to express your feelings regarding this loss. Cry if you need to. Connecting with others in person will also reduce the tendency to isolate yourself in the midst of coping with grief. If there is nobody you can connect with in this way consider going to a grief support group or grief on line chat room. It can really help connecting with others who have experienced a similar loss. It helps you feel less alone and it will normalize your feelings.

 

  1. If your loved one was in hospice, or at a skilled nursing facility, getting home health care, or at an assisted living program, talk to the staff or people there. They can offer you important support and counsel you. In the Jewish religion, after a person dies the family sits Shiva. One of the key components of Shiva is to hear stories about the person who has died. This offers comfort to the family, others learn about the person who has died, and it keeps their memory alive in significant ways.

 

  1. Celebrate the life of the person you lost in meaningful ways. If they liked nature, take a walk in the woods. If they liked poetry, read some of their favorite poems. Recall the positive experiences you had as a caregiver with your loved one and focus on those memories. If you can replicate what those moments entailed by yourself or with a trusted friend that may be a source of comfort to you and help you to move forward.

 

  1. Don’t berate yourself for things you should or could have done differently. Caregiving is hard and we all have moments of frustration where we wish we could change our reactions or responses. Forgive yourself as you would forgive others and focus on the things you did as a caregiver that helped your bring safety and quality into the life of your loved one.

 

  1. Give yourself permission to move forward without guilt. Focus on restructuring your time in meaningful ways surrounding yourself with people and tasks that will nourish and strengthen you.

 

  1. Know that you will have bad moments or days along the way after the death of the person you took care of. There will be obvious triggers like birthdays or anniversaries. Plan ahead and think about how you want to manage those days. Who would you like to be there with you? Unexpected triggers will happen too causing you to tailspin. You may see someone that looks like the person you took care of or smell their perfume or hear their favorite song. Acknowledge that this was a tough day.  Remind yourself this is another step in the grief process and figure out ways to make the next day a better day.

Remember you cannot put a timetable on grief. You can’t say how long it will last. Filling the hours you spent as a caregiver in meaningful ways with people that comfort and support you will help you to begin a life without caregiving as the center focus. Seek professional counseling if you find the symptoms of grief linger for an extended period of time to the extent that you continue to feel overwhelmed and have difficulty functioning on a day to day basis.

Written by Iris Waichler
Iris Waichler, MSW, LCSW is the author of Role Reversal How to Take Care of Yourself and Your Aging Parents. Role Reversal is the winner of 5 major book awards. Ms. Waichler has been a medical social worker and patient advocate for 40 years. She has done freelance writing, counseling, and workshops on patient advocacy and healthcare related issues for 17 years. Find out more at her website http://iriswaichler.wpengine.com

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28 Comments

  1. . My Mother passed on February 5, 2020 and was buried on February 10, 2020. I took care of her from 2010 to the day she passed. I was the only child.
    dad passed on August 1, 2008. I was with him in hospice center. Mom had history of falling. She was in rehab centers for about 2 or 3 times from falling. She had meals on wheels, I fixed her peanut butter crackers at night and coffee, I cleaned her up when she soiled on herself . Gave her sponge baths sometimes when she did not want a shower. Fixed breakfast for her. I lived with her after job ended in 2009. Got rid of truck and belongings and moved in with mom. Slept in her bed to keep her company since dad had died. Would go to Kure Beach NC to let her walk with her rollator to get some exercise. Went to Walmart and let her use rollator. She had dementia and cataracts. In June 2019 she fell at beach-broke bone in left leg near ankle. Because of age put boot on it. Was in rehab for 4 to 5 weeks and released. She had physical therapy after that. Her last appt. was for dec. 4, 2019. On dec. 1, 2019 she fell again and broke her hip. She went into hospital. Did surgery to repair hip. Went to rehab. again. Infection set in. She stayed in rehab all month of dec. until jan8 or jan 11. Took her home. She was on pureed diet in rehab and went to mechanical soft diet. She had one or two good balve movements and then it changed to li ke diahrea. She would sleep a lot . She was irritable. Would crush her medicine and mix it with peanut butter and honey and give it to her. Would fix small amounts of scrambled eggs and grits. She would eat some and say she did not want anymore. Had hospice come in. She was on oxygen – her oxygen was low. On feb 5, she complained that her chest was hurting. called hospice nurse and she said put oxygen tube on moms nose. she started to feel fine. after state of union speech mom called out to me that she was in distress. her chest was hurting. she felt she was going to throw up but nothing came out. I gave mom a pan and called hospice nurse. she came out. Mom threw up clear yellow fluid. Her face became strained and her eyes got big and turned to closet door in bedroom and I took one of her pillows out from under her head. She never said anything the whole time. Did not talk much the whole day except when I gave her medicine. Just wanted sip of water during day.Nurse checked moms oxygen level. There was no reading. Talked to mom. No response. Checked her chest. Nothing. Nurse turned to me and said that she had passed. I saw her mouth open and her chest rise up and down and she said that would stop and it did. Had never seen anyone actually die until that night. I held her hand. I had her clothes ready for this moment. Cleaned mom up like I did with a sponge bath. Put some clothes on her and waited for funeral home to come by. Even wrote obit for paper. I now know after thinking about things for a couple of days my moms body was dying and the spirit in the body was wanting to be released. She lived a long life. Now I tell myself its time to take care of myself. But how? Will go to grief counseling at local hospice. Have been walking weather permitting. Started journaling my feelings. Heard mom call my name this morning from bedroom. Was in kitchen and opened fridge and heard Bob from bedroom. Went in and told mom l heard her-started crying and said I love you mama and I miss you.

    Reply
  2. Just getting over it. My spouse died very suddenly two years ago. Having made my living as her caregiver, I had to find new caring jobs and threw myself into the work with a frenzy. After all this time, I am starting to realize that I can begin to live for me.

    Reply
  3. Thank you for this. Being my Dads caregiver and working was tough. People who have not been caregivers do not understand the loss and grief. It has been 2-1/2 years and some days are harder than others but moving forward .

    Reply
  4. Thank you for this. Being my Dads caregiver and working was tough. People who have not been caregivers do not understand the loss and grief. It has been 2-1/2 years and some days are harder than others but moving forward .

    Reply
  5. One foot in front of the other for me. Coming up to one year passing for my Mother. June 3 forever etched in my heart.

    What gets me through this sadness is that she did have a wonderful life. I have amazing pictures and videos.

    The sadness is really even harder than taking care of a loved one.

    I struggle from time to time.
    When that happens I think of something we did together. Sometimes I cry and sometimes I laugh.

    I talk myself out of the sadness. I try not to stay there too long.

    There are days I have energy to conquer the world and days I have enough energy to sit in a chair.

    I did read something from a Monk…..

    My Mother is me and I her…… how could I possibly miss her.

    That resolute with me and has helped me along this new path of life.

    Blessings and prayers to all caregivers.

    Reply
  6. One foot in front of the other for me. Coming up to one year passing for my Mother. June 3 forever etched in my heart.

    What gets me through this sadness is that she did have a wonderful life. I have amazing pictures and videos.

    The sadness is really even harder than taking care of a loved one.

    I struggle from time to time.
    When that happens I think of something we did together. Sometimes I cry and sometimes I laugh.

    I talk myself out of the sadness. I try not to stay there too long.

    There are days I have energy to conquer the world and days I have enough energy to sit in a chair.

    I did read something from a Monk…..

    My Mother is me and I her…… how could I possibly miss her.

    That resolute with me and has helped me along this new path of life.

    Blessings and prayers to all caregivers.

    Reply
    • I found one of my best friends deceased on 9/11/20, whom I quit working retail to make my prime job focus as her caregiver, even though it wasn’t full time. I had several other clients since I started caring for her in 2014 as well, and prior to all these years caregiving I did part time caregiving for my disabled brother until his death in 2007. I was working a 2nd part time job at a store which I quit a week before she passed. Now not only have I lost a constant presence in my life, a close girlfriend, but now my job and all sources of income. The grief i’m feeling is unpredictable, I cry a lot, and I’ve been through 1 or more deaths of loved ones every year for the past 13 years. I’m having a difficult time getting back to my hobbies and interests, perhaps, it’s just because this is still very fresh. I’m incredibly frustrated because of the way her family is treating her passing as well. She was adopted even though she was adopted at 3 days old, they don’t seem to be treating her as an equal, or as important as blood family. This is massively bothering me. Her father went into a home just months before she passed as I was caring for both of them and they’ve looked after each other since her mom/ his wife passed a few years ago. Her dad if he were able to be the one in charge would not be disgracing her memory the way they are, and wouldn’t stand for it. She was his daughter, blood didn’t matter, and suddenly my little extended/adopted family as they saw me as another daughter/sister is all broken, and gone. I can’t even go visit her dad, it’s horrible, with covid and the fact that they seem to be like well you were her friend so, “bye Felicia”. They seem to be very false towards how they see me, and we’re hardly around at all in the past 15 years I became close to the family. It is very upsetting, but beyond my control, and it just hurts on so many levels.

      Reply
  7. This is why having dad work out his funeral preferences matter so much. It helps both of us know what will happen, and gives me the means to work to structure something for when he’s gone. I hate it, but it must be done. Because at the time of the loss, you are at a loss with everything. Having a ‘to do list’ is vital.

    Reply
  8. This is why having dad work out his funeral preferences matter so much. It helps both of us know what will happen, and gives me the means to work to structure something for when he’s gone. I hate it, but it must be done. Because at the time of the loss, you are at a loss with everything. Having a ‘to do list’ is vital.

    Reply
    • My husband chose cremation. His ash Urn is with me

      Reply
    • My Dad had his planned. A VA burial. My Mom has nothing planned and would never talk about it. I am the only one that saw both parents to the end with not one concern from anyone else in the family. I think not understanding that has been a grief for me as well as losing my parents. I never thought my entire life that no one would care at the ends of their lives. Very heartbreaking. A lot of grief for a lot of things.

      Reply
  9. Michael L. Thomas….. this is a great article on grief

    Reply
  10. Michael L. Thomas….. this is a great article on grief

    Reply
  11. This weighs heavily on my mind. I’ve been caring for my mom since I was 12 years old. I’m now 38. What happens when she passes away? The only life I’ve ever known is that of a caregiver.

    Reply
  12. This weighs heavily on my mind. I’ve been caring for my mom since I was 12 years old. I’m now 38. What happens when she passes away? The only life I’ve ever known is that of a caregiver.

    Reply
    • I understand that and I really don’t know how we pick up from that point when it comes.
      I guess we wait to see.

      Reply
  13. I’m living this journey ✝️. My husband of 32 1/2yrs passed 12/23/17. I was his 24/7 caregiver 12/23/14-12/23/17.

    Reply
  14. I’m living this journey ✝️. My husband of 32 1/2yrs passed 12/23/17. I was his 24/7 caregiver 12/23/14-12/23/17.

    Reply
    • My your husband Rest In Peace

      Reply
  15. Thanks for this

    Reply
  16. Julie Russ Parker, worth reading.

    Reply
  17. Julie Russ Parker, worth reading.

    Reply
  18. This was needed!!

    Reply
  19. This was needed!!

    Reply

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