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


9 Responses to Grieving After A Long Term Illness

  • No words but to say you are all so brave, my husband just died, 30th July, after long illness with MS, I cared for him for 19 years and now I am a widow at 53, wasn’t supposed to be like this, he was my world and it was my privilege to care for him and to love him, I am a bit scared of the grieving process and I don’t feel like he has gone, my faith is strong and I pray to God for all of you beautiful people, I found this page whilst searching for what I am not sure but your stories touched me , God bless

  • I appreciated reading this. My mother recently passed after almost 10 years of decline. It all began with a catastrophic fall, and then subsequent more minor falls, horrible infections and another terrible fall involving a shoulder replacement at age 91.
    I became ill a week after she passed and am just so fatigued. I also feel a lot of anger.
    Seeing her suffer…and suffering along with her, for so long, seems just cruel. There is no point to it.
    I also have trouble accessing the good memories of her, because she was such a touchstone in my life and we were best friends. I can only see, in my mind…how horrible things became during the last few years.
    When will I have the comfort of good memories?
    Like you say in the article…my life was at least 85% of the time, spend on doing things for her. Now it feels like someone pulled the rug out from me.
    And with the long illness, the intense suffering of her recent decline and now the horrible job of sorting out her home for selling it…it seems like I have hit the Trifecta of Misery.
    It is not like me to wallow in self pity but that seems to be what is happening.
    Are you s ure that things get better?

  • My husband of 40 years recently died after 3 years suffering from cancer. He discharged himself from the Acute ward of our local hospital because he just wanted to be home and died at a few days later. I had been his carer full time and now I was without him. He had been the centre of my life for all the time I had known him. I have no friends or family even on the same continent and could not bear to talk about it to a local professional. I am at a loss, just one half of a whole. I have prided myself coping with any situation but now find myself getting depressed and sad and not wanting to be without him. I am forcing myself out of the house once a week. I have bought a cat from the local rescue centre and she helps but I feel I am falling deeper into the pit. It helps that I can just say all this to complete strangers. I know I will get over this but by God, it is so hard.

  • @Rod Drummond, I am so sorry for your loss. As Diana said in this article, “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.” Surround yourself with loving support of family, friends and consider a grief group. – JoAnne

    You are welcome to join our Facebook group and get support from others.

  • My wife recently died. She had been ill for the last four years. She was sent home from the hospital three years ago on hospice. with faith and prayer she had some recovery. then three months ago she started declining daily. I think we both grieved her pending death. she refused to seek medical treatment. We had the different stages of grief. I realize now she was trying to prepare me for her passing.. She was also sad and afraid that she was passing.
    Now that I am alone I am overwhelm with grief.

  • @Debbie, I am so sorry for your loss and the long transition you both faced. I encourage you to seek support of your family, friends and a grief support group if that feels right. You have experienced anticipatory grief for some time and to share that journey with others who have had a similar experience can be healing. I believe your husband is OK and free from his disease on the other side. – many blessings sent you way, JoAnne

  • My husband passed away last Monday after being sick with multiple myeloma, leukemia, kidney failure, and most recently a bout of the flu, hospitalization, only to come home,, take a fall, and dying from massive blood bleed in his brain. We never lost hope, but bone marrow wasn’t producing platelets or red blood cells and he was having transfusions twice a week. He had stem cell transplant in 2015 and we were just ready to have stored cells transplanted and then he fell and died. So used to taking care of him and he was thankful . Just hope he’s okay.

  • 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!



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