Grieving After A Long Term Illness

Losing a loved one after they have struggled with a long-term illness, can present the bereaved with unique grieving challenges.  Even before we lose our loved one we may deal with grieving issues, also known as Anticipatory Grief.

Anticipatory grief means that we are doing our grief work, even before our loved one has died.  This happens because we see our loved one changing, day by day.  They become less able to do the things they used to do and become more dependent upon us for help and self-care.  The loved one could be a husband, who was strong and protective and now, through the disease process, is left bed bound and dependent on his wife for bathing and toileting.  A wife may feel intense sadness, not because she has to perform these duties, but because she knows how it may make her husband feel, having to depend on her in this way.  We also may be grieving the secondary losses that come from these situations.

One of the many secondary losses we can experience is the loss of our loved one’s income.  Imagine having to run a household on one income, if it were a two income home, or no income at all now that the loved one is seriously ill and can no longer work.  One must still pay the regular bills, in addition to the many medical bills that are coming in while our loved one is still struggling with their illness.  Add to these stressors, the stressors of being a caregiver and you have the recipe for caregiver breakdown and anticipatory grief.

Once our loved one dies, we may feel a mix of emotions – sadness, relief, guilt and regret – to name just a few.  These are typical grief reactions, but as a caregiver of a loved one who suffered a long time with an illness, we may also find ourselves wondering, “What now?” Our lives were so enmeshed with the care of our loved one, that it may have been to the exclusion of all else in our lives.  I know many caregivers who gave up socializing, working, and family events to be able to care for their loved one 24/7.  Now they may find themselves alone in the home, with no one to look after, and their normally structured day is now completely free to do whatever they like.  But what is that?

Part of the grieving process is to find our “new normal.”  Who are we without our loved one? What do we do now without our loved one? What kind of future do we have without our loved one?  A bereaved caregiver may find themselves wandering around the home trying to figure out what they need to do.  Often they get up to give their loved one their medication only to remember they don’t need to worry about that anymore, and with a heavy sigh, sit back down.  Or go to the other room to check on their loved one to make sure they are ok and walk into an empty room with the realization that their life has changed forever.  When we do understand that we have freedom and allow ourselves to venture out, we may be plagued with unease or guilt.  It’s as if we’re not comfortable in this new skin.  We have forgotten how to do for ourselves, how to enjoy ourselves, how to live a life without schedules or structure.

As with any kind of griever, a grieving caregiver needs to be patient with themselves, gentle with themselves, give themselves time to heal, time to figure out what the next step is going to be.  One of the biggest challenges is practicing self-care.  As a caregiver for our loved one, we typically put off our own self-care because we just don’t have the luxury of time or money.  By the time our loved one dies, our immune system is shot and we may find ourselves dealing with our own health issues, on top of our grief.  It is imperative that we make time for ourselves every day.  Take the time to eat properly, to rest, to exercise, to meditate or pray, to read, to listen to music, to spend quality time with our family or friends again.  I say this is one of the biggest challenges because when we are grieving, self-care is something we really don’t want to do.  Most find it difficult in the first few weeks to get out of bed, or venture out of the house. However, if we don’t – we will pay a heavy price and if we have children, or other family members, they will pay the price as well.

A new griever finds it hard to believe that things will get better. But it does!  Each person grieves and recovers in their own unique way.  Some will take longer than others, but with each passing day, it gets a little better and we usually find that we are starting to put a plan together for our new future, for our “new normal.”

Diana Sebzda, MA, LPC, CT
http://dianasgriefsupport.blogspot.com

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2 Responses to Grieving After A Long Term Illness

  • My wife passed just over 4 years ago. It seems like this article was written about me. I worked to maintain our home, cared for our son, and learned how to do all sorts of skilled nursing. I stopped caring for myself, and grieved each time something happened and she lost some part of herself. By the time hospice and finally her passing happened, I was thoroughly broken. I didn’t tell anyone, but I just stopped caring. Now that time has passed, I’m taking care of myself. I’m a better father. Things really do get better, but sometimes, it is a hard journey.

  • Thanks for a helpful article. This was healing for me to read even 3 years after my husband’s death, 5 years after his diagnosis. We truly learn something new every day.

    Thanks for all you do!

    Best,

    Supa
    @freshwidow

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