Anticipatory Grief

There is grief from the sudden loss of someone.. suicide, murder, accident, heart attack, etc. There is grief from someone dying who is ill from cancer or any long term illness.  Then there is the worst grief of them all.  Anticipatory grief.  It is mainly suffered by caregivers.

I have suffered this once before with my father in law.  I quit my job, along with my husband, moved in with him.  My then 2 yr old son, my husband, and I.  He had throat cancer and at the time we moved in, he hadn’t been diagnosed yet, but he knew something was up and was preparing for the worst.  Fast forward, he had terminal throat cancer.  He had been through 6 weeks of daily radiation treatments, surgery, a round of chemo, and all that went to waste.  Nov. 14, 2004 was a day I will never forget.  My son turned 3 that day.  Happy birthday son, your grandpa is dying.

The following 4 months were the longest 4 months of my life.  I helped him change clothes, do his feeding tube, make sure he was comfortable all around.  It got to the point when he was bed ridden, we knew he wasn’t going to last long.  The hospice nurse that we had (seriously, those guys are amazing) made sure we were taken care of.  But nothing ever prepared us for the grief that we were going through.  Anticipatory grief is a funny thing.  Its not your normal grief.  You cry because you are worn out.  You are so emotionally and mentally tired, much less physically.  You grieve over the loss of your freedom, you grieve over the pain that they are dealing with, and you don’t know when its going to end.

I started dealing with this ugly monster again when mom was diagnosed with dementia.  There is nothing worse than watching someone you love, who has been your rock, your best friend, your shopping partner die and yet they are still there.  I knew what was to come being that I had worked with dementia patients before.  I knew she would eventually not know who I was, that I was going to have to be her parent.  Before the cancer diagnosis, it was pretty slow changes, she was still mostly there.  There were still times that she wasn’t, but for the most part she was.  Then, came the cancer.  I still have a hard time saying she has it.  It has sped up the dementia and tonight it hit me harder than anything has ever hit.

“I want to go home.”

“Mom, you are home.  You never left.”

“I know, but I want to sit in my own living room and just be.”

After talking to her for a while, she meant she wants to go back in time to before everything changed.  “Mom, I wish I could do that, too.”

Every morning I wake up and have the same feeling I did with my father in law.  Going in the house and worry I am going to find my mom never woke up.  That  feeling every morning wears on you.  You know you need to check on them, but you are scared to find that they passed during the night.  Then when you see that they are up, or just even breathing, its a huge sense of relief.   As a caregiver, you are relieved that you have them another day.  But yet, you are so tired mentally, emotionally, and physically that you sometimes wonder how you are going to deal with another day.  Then when the day comes that they do go, you feel lost.  You have spend months or even years caring for someone and you don’t know what to do.  Then, you lose it.  The reality that they are gone and you are going to have to deal with everything that deaths bring.  And I am getting there.  I have spent now almost 2 years with a form of this grief, but its getting to be stronger and stronger now that I sense my mom is ready to go home.

I pray that she stays just a bit longer to see her brother whom she hasn’t seen in 20+ years and have just one more anniversary.  They have been married 52/53 years and together I believe 55 or so.  But also tonight, I told her she doesn’t have to stay for us.  I know she is miserable.  Her voice is weak, her strength is going, and she’s becoming more confused by the day.  I hate seeing her this way.  I grieve for her not being who she wants to be.  She wants the old her back.  I grieve for the mom long ago.


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