Anticpatory Grief

[SandyS653416]

If you are living with a a life-changing event about to take place in your life, or the life of a loved one directly impacting your life ~ experiencing anxiety knowing the event will happen, just don't know when! I'd like to hear from you, how you are coping with anticipatory grief, grief from anxiety about all of the unknowns likely taking place in the future...because I am struggling with anticipatory grief.

[AngieB599315]

I have struggled with this as well. I find myself going into my mother-in-law's room holding my breath wondering if today is the day. I have suffered with depression recently because of it. My friend help me a lot when she told me not to pre-grieve. I still struggle some days with constantly thinking about what will happen. Some days I win the battle with my mind and some days, I need to talk to others to help me process the feelings so I can move forward.

[mtpearce]

Angie, I am so sorry you are going through this.  Unfortunately, most of us will be in this position at some time in our lives with one or more loved ones.  Please believe that better days are ahead.  Take one day at a time.  Get adequate sleep.  Breathe deeply.  Take a few minutes to sit quietly each day - maybe outside, so you can enjoy some fresh air and nature.  I am not a psychologist. I'm just someone who has been through it, and I want you to know - it's okay to feel sad and frustrated..... BUT never feel hopeless.  Life sometimes throws a lot at us at once.  This is one of those times for you.  But it will pass, and you will feel the sunshine on your face again soon. 

[mtpearce]

Sandy, I just saw your note - and it has been some time since you entered it - so I don't know if you are still following this.  First, my thoughts and prayers are with you.  This must be one of the most difficult times of your life. 

I was the primary caretaker for my father in 1991, my only sister in 2002, and my mother in 2003.   Each of them lived about two years after being diagnosed as terminal. Each of them faced their diagnosis with such grace and courage, but only my father conversed with me about it a lot.  My sister talked about it at times, and my mother almost not at all.  So, in retrospect, I learned that every patient will deal with it differently, and a caretaker would be doing a loving service to the patient to listen carefully and let it be OKAY, to talk or not to talk. They will let you know what they prefer. And if they ask you hard questions, try to be honest and genuine, but loving, in how you answer.

During each of those very sad and frustrating terminal illnesses, I experienced what you explain as anticipatory grief.  At times, it settled on me like a very heavy, dark cloud - and because I am normally a very optimistic, take charge, upbeat person, it frightened me that I was falling into sad, muddled, futile spells.  At times, I awoke from a deep sleep, sat up in bed in a panic, knowing I was losing them and there was not a damned thing I could do to change it.  At times I kind of hyperventilated and felt like I could not breathe, because I was so afraid. In retrospect, I think I was suffering from depression, but I never put that name on it at the time.  I worked through it by making it a priority to bring something cheerful or beautiful into our lives (mine and my patient's) every day - sometimes it was beautiful music, sometimes a bouquet, sometimes just spending time sitting in the room with them and talking about their childhood or something to make them smile. 

I almost forgot to take care of myself.  I lost my appetite, and meals were no longer a celebration, but something I rushed through because I was rushing through everything.   Once I was so stressed when both my mother and my sister were in the same hospital - with no positive news on either of them - I checked myself into the ER, certain I was having a heart attack.  (I was a 51 year old woman in excellent health.)   The doctors checked me for 4 hours and said I was in perfect health but experiencing a panic attack.  So, my advice to you is:  remember that you are important to your loved one and you need to keep yourself healthy for them - and recognize that you are only human, you are doing your best, and you MUST care for yourself now, not "sometime in the future when the situation changes.". Find a way to calm your life for a few minutes each day:  meditation, yoga, nature walks, whatever you love. Eat healthy food and drink only a little alcohol.  And try to sleep at night, even if you are so worried that you have to move your bed into your patient's bedroom so you feel like you will be there, if needed, but you can also get some rest.   

You should know that, this too shall pass.  You don't want to think about that  now - because it means the terminal illness will be over.  But, just put the thought in the back of your mind that life does move on, humans do recuperate, and there will be blue skies again some day.  It will keep you from thinking all is lost.   

Two things happened to me after each of the illnesses were over:  1) I wished I could talk with them again, hear their voice. I feared I would forget too many things about them.  This makes it all the more important to talk with them, hear stories about who they were in their younger years, tell them how much you love them and what a gift they have been to you.   2) I carried my grief with me everywhere immediately after my loss.  Finally, I told myself that, each time I remembered them, instead of starting to cry, I'd force myself to remember something wonderful about them, or a joke they had told, or some really sweet, outrageous thing they had done - and smile about it.  It was difficult to do this at first, but once I got it going, it helped me immensely.

Finally, know that there are people in your life who care and truly want to help you.  They may not know exactly how to help, and they may feel awkward talking to you about what you are going through.  But, when someone says, "I am so sorry for what you are going through. How can I help?"  believe they mean it - and think of something they can do that would lighten your load or light up the life of your loved one.  

Best wishes.   We are all thinking and praying for you.

[SharonM994442]

To all of you-thank you for putting a name to what I've been going through with my Mom who has Congestive Heart Failure and has been in a Nursing Home for 6 years with several episodes of Pneumonia and fluid build-up. She just spent a week in the hospital and is back at Nursing Home, but it's always on my mind as to when the call might come from there that she is gone. My prayers are with anyone who goes through this, Sharon

[JaneCares]

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@SandyS653416 wrote:
If you are living with a a life-changing event about to take place in your life, or the life of a loved one directly impacting your life ~ experiencing anxiety knowing the event will happen, just don't know when! I'd like to hear from you, how you are coping with anticipatory grief, grief from anxiety about all of the unknowns likely taking place in the future...because I am struggling with anticipatory grief.

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Hi Sandy,

I'm sorry you're going through anticipatory grief. When i knew my father was near death, one way i coped was to take care of what i could deal with each day so that i was less fearful. This was particularly true of practical matters. I'd say I loved him every time i left him. Towards the very end, my sister and i took turns spending the night in the nursing home room he was in (for 7 years). Our step mother took the day time visits so we could sleep and/or run around doing errands. 

All of the unknowns... that's a lot. Is there any way you could be a bit more specific? What i find is to write things down: what are the things i can do something about? And then the rest i just had to turn over to the other members of my family, and to God. Do the best i could, then forgive myself for imperfection.

I hope you find some comfort, and support as you go through all of this...

Jane

[je4789]

Hi, Sandy,

I am sorry this is such a difficult time for you. I strongly encourage talking with your local Hospice organization. They have some wonderful people (angels, actually) working (and volunteering) for them. 

Wishing you the best in your journey,

Joanna

[amadeusjr]

My wife died of lung cancer 3 years ago. During her illness I was the primary caregiver. It was the most stressful experience of my life and I am still dealing with it. When I was a kid, there was a lot of beating around the bush about cancer. Even doctors would whisper the name and often wouldn't tell the patient what they had. They would address it to the spouse.

This is no longer the case. The doctors told us both in a very matter of fact way that the diagnosis was terminal and that even with the most new age chemo drugs we had perhaps a year or two left together. In fact, it was over in 10 months.

We both tried to ignore the prognosis and believed that we could beat it. There were a lot of ups and downs, side effects from her medication, surgical procedures, but we still went on living our lives as best we could. Finally I could see a difference in her eyes. There was a blank vacuous look and I could tell that the cancer had progressed to her brain. At that point I had a heart attack.

I drove myself along with Cathie to the hospital. All I could think was that I couldn't die and leave her alone. The heart attack was minor and they sent me home the next day with a few new prescriptions and told me I would be OK if I just took my meds.

Despite her ongoing treatment, Cathies' condition continued to deteriorate and her medical group set up a home hospice program with visiting nurses and home health aids to help me keep her clean and comfortable. The last weeks were very difficult for me. She was in and out of consciousness and beyond communication. The waiting was intolerable. I read to her, though I don't think she could comprehend it. Losing someone you love is the hardest life lesson even under the best of circumstances. The caregiver must understand that they must care for themself as well. 

Thank you for providing this forum,

Michael G