Rebuilding Your Life After the Death of Your Care Receiver

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When my mother died in a local nursing home, my "career" of visiting this exceptional facility nearly every day for close to 15 years ended. Mom's death prompted a nurse to whom I'd become quite close, to say to me, "We'll still be seeing you up here. You won't be able to quit."

She was wrong on that one. However, my case may be a little different from many others, as I'd spent nearly two decades caring for multiple elders. Also, my caregiving had not totally ended. I still had a family member at home who needed my care.

Grief and relief

Many of us start our caregiving career by assisting an elder in his or her home, or we have a spouse who declines and we become the default caregiver in our own home. This care expands to a point where we need some type of respite, often in the form of in-home care agency help. Eventually, the move to assisted living or even a nursing home may become necessary for everyone's health and wellbeing. Whatever happens, we remain caregivers. Many of us continue to see our care receiver daily. Most of us continue to be involved as advocates and support throughout the time of need. When our loving attention and care is no longer needed, we can, indeed, feel lost.

For some of us, the death of a loved one who has suffered for years brings some relief along with our natural grief. Not everyone can admit to the relief aspect, because they are afraid that they will appear unfeeling to others, or even to themselves.

Of course, people who feel relief when a parent or spouse dies are not uncaring or unloving. Quite the reverse. Who among us wants to watch someone they love suffer? But society can place a virtual halo on a long-suffering caregiver in a way that we feel we may be judged negatively if we admit to some relief when our care receiver dies.

Most of us also feel grief, and sometimes that grief can be nearly paralyzing. Whatever we feel, one thing is certain. Our life has changed.

We need to move into the next stage, but how?

Moving into the next stage of our lives requires a change in attitude, and unique steps for each of us. Many of us need outside help.

  1. If your loved one received hospice care to relieve pain and comfort care during the last stage of life, you may benefit from the grief support that most hospice organizations offer. This support often allows you to air your innermost feelings with others going through the grieving process you are. Other support avenues include possible counseling with your spiritual leader or a professional counselor. The idea is that you may need support in order to move on.
  2. Drop any guilt about things that you feel you could have done differently. You did your best, even though you probably weren't perfect each day because we are all imperfect caregivers. Compare notes with other caregivers and you will likely understand that you did just fine. If you have certain incidences nagging at you that you can't let go of, write your deceased care receiver a letter of apology. Then, consider the apology accepted and tear up the letter. You have been forgiven by them, now forgive yourself.
  3. Preserve positive memories of your relationship with your care receiver, and relegate the negative ones to a compassionate place on the side. For those of us who helped our loved ones through years of dementia, this can be a challenge. Forgive your loved one, if that step is needed. Most of us can only truly move on if we've forgiven people for any mistreatment we may have incurred. Here, again, counseling may help. Whether you receive counseling or not, dig back and drag out positive memories of your life with your care receiver. Make a pact with yourself to keep these memories uppermost in your mind.
  4. Once you've gotten help with your grief, look outside of yourself. Volunteering is a good way to do this. Volunteer at a nursing home or senior center if you want continued contact with elders. Or do the opposite and volunteer to work with children. The refreshment that comes from seeing lively youngsters can be a reminder that life goes on.
  5. Work with active caregivers to share the wisdom of your experience. Or again do the opposite. Leave caregiving behind. But keep the compassion that you gained, the patience you honed, the insight into the problems of others that you found through the educational process of caregiving. Find other ways to use this wisdom. I believe that nearly anyone who has been a caregiver has gained some insight and compassion for people who are hurting. There are many ways to share this. Find your own niche and you life will improve.

As with all caregiving stages, people in the after-stage need to practice self-care. Do what you need to do to help yourself move on.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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23 Comments

I just buried my mother today after taking care of her in my home for the last 5 years. She suffered for a long time, especially at the end of her life and I was "hospice". I was with her when she took her last breaths and I am so grateful she did not pass alone. We did reconcile a while ago about issues that we had and I feel that she went knowing we were at peace with each other.
I thought I would be prepared for the day but I wasn't. It was still very hard and I still can't believe that it is over. I did go to a support group,a counsler and this site to help me navigate the caregiver role and it was a tremendous help. I still hope that I did enough for her. I have to believe that she is now at peace, no longer in pain and in a much better place.
We caregivers are special people and unless you walk in our shoes no one can understand.
I told my mother that I will always love her and keep her in my heart forever.
My God bless all the people who are caregivers and the people that they care for.
oneandonly
I lost my mom a month and a half ago. I am lost. I was her only caregiver up untill October. I gave up my life for her. My friends, my kids suffered and I left my job to care for her. I would do anything to have her back and the hectic days of caregiving. I was her only daughter and we were so close. I enjoyed being together everyday even when she went into the nursing home. She would tell me "i am so glad your here, I feel so much better. I know she is finally at peace and that is so reassuring. I mean, i will suffer for the rest of my life for her knowing she is at peace and happy. I had 42yrs with her. But how do I do this? How do I live the next half of my life without her? Sometimes I can barely get through the day. What do I do now? Find a job? I don't feel like handle anything right now. I forced myself to go to a dinner party last weekend and I was miserable. I stuck it out for my husband because he thinks I need to be around people, but that is the last thing I want to do. I am not strong enough to pretend I am ok. I am having a hard time reaching out because I just want to be alone. I am so lost without her. Mom was my everything and the only one who really,really knew me. Ugh! I hate this! How do we do this?
Oneandonly....I am in the place you are. It seems no one understands except fellow caregivers. My mother lived with me for the past seven years. I devoted all my time to her. She died less than a month ago. I must say everyone told me "now you can rest". I can not rest, I cry all day missing her and our routine. I did have Hospice come to the house. They helped a great deal, and yet I wish they were not in my home. I wanted just one on one time with my mother yet; I needed the help.
No words can explain the loss I feel. I pray for peace and for other people that have lost their loved ones. I hope and pray there is a heaven...for that hope is the only thing that is keeping me wanting to go on. I miss my mother and my heart is so heavy with grief. I know my mother would truly hate to see me this way. She told me she did not want to die because she was afraid of what would happen to me. In memory of my mother, I get up everyday with the intentions to try to be a little bit happier. Maybe in time I will be able to accomplish that. I hope you are finding life a little easier and less painful...God bless you!