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 Caregiver Grief (while loved one is living) 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Caregiver Grief (while loved one is living)
Interesting article but I take some issue with their terminology. 'Anticipatory grief' sounds, to me, like grieving because you anticipate the death of your LO. The fact is we are grieving for genuine losses already incurred. When they speak of 'loss' they are usually referring to death. The losses in LBD and other dementias are just as dramatic as death. My LO isn't himself, doesn't know me and I have LOST him as a husband, lover, companion, helper. I have been grieving his LOSS for years. I have also been grieving my personal losses.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Sep 25, 2010 3:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Caregiver Grief (while loved one is living)
I rather like the term "anticipatory grief." When I first read the term years ago, it made sense to me.


Sat Sep 25, 2010 10:58 pm
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: Caregiver Grief (while loved one is living)
So I have a pretty good relationship with my dad Diagnosed 3 years ago. He has been in ALF for three weeks now. However I have only this morning had a rather distressing conversation with my sister over the pressure I am putting on mum to handle dad differently to how she currently is to improve the way he speaks to her when she visits him. BUT unbeknowns to me my dad has treated my mum unkindly for over 20 years and she has sheltered me and my siblings quite marvellously from all this and now I am facing the fact that my parents have been in a loveless marriage for 2 decades and she is struggling with being able to give him the any kind of sympathy or compassion for him in his current state. I am devastated that for one my family is not what I thought it was and guilt that my relationship is a good one with dad but mum is now saying she will not visit him for a fortnite as the weekend visit did not go well with him being accusatory about why he is there and being overall not nice to mum. I told her that extending her visits to fortnightly probably was not a good one as he already feels like we have abandoned him (this was before I was told of the state of their relationship by my sister) So do I take a step back (I feel I need to give mum a huge hug and say I am so sorry but I had no idea what she has been dealing with for so long) I have been enjoying my visits with dad he is closer to where I live and can see him more often but now I think should I distance myself for while until he gets in a routine he is very negative about everyone and everything in the ALF when any of us visit but I don't take it as being true just Lewy talking so I can leave feeling good with how he is being cared for mum on the other hand sees it as him being ungrateful and encourages him to make friends and talk with other residents and stop being so angry all the time. So my dilema is whenever I want to tell mum about my visits to dad I am going to be thinking she really doesn't want to hear it though she would never say. Because their relationship i so strained. I asked mum yesterday if she gives dad a hug when she sees him and she said yes she does, but my sister told me this morning that she doesn't and can't because of the resentment towards him. I feel like my whole life has been a lie and I no as a parent you protect your children whatever it takes but I can't believe this is happening our family is so normal (I thought).
I do want to support mum and told her I would defend her if dad disrespects her but I feel she thinks I am taking sides> I


Sun Oct 10, 2010 11:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Caregiver Grief (while loved one is living)
Kelli -
My two cents.... Give your mom a big hug and continue to visit your father. Was there something about the "caregiver grief" topic or "anticipatory grief" term that struck you?
Robin


Mon Oct 11, 2010 12:55 am
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: Caregiver Grief (while loved one is living)
Not sure, I have armed myself with as much knowledge of this disease as I can so I feel like we are all grieving prematurely to our LO actually passing just knowing what may be coming.. The fact that mum has been grieving silently for so long and I did not know. Dad had depression for many years and anxiety attacks also and this I feel were just precursors to his current condition but he was not diagnosed. He could have had this disease for as long as 10 years possibly when I look back now. I just hate the way our lives are being spun around at the moment. I am not used to dealing with family breakdowns as I said we are so normal (or so I thought).


Mon Oct 11, 2010 6:21 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Caregiver Grief (while loved one is living)
Yesterday, I broke down and cried. I'm losing my lover and friend a little bit more every day. The pain finally got to me.

I think the term 'anticipatory grief' is way off target. It implies that we are grieving something that we are anticipating. I'm living it right now. My sweet man is leaving me day by day. Not his body... but his mind.

I am not 'grieving prematurely.' This is GRIEF that has nothing to do with his eventual death. This is the pain of having lost the part of him that has already gone.

Whoever wrote the term 'anticipatory grief' has never lost a loving husband in this way.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Nov 06, 2010 7:07 am
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Post Re: Caregiver Grief (while loved one is living)
Leone,
Perhaps you can contact the psychiatrists/psychologists who came up with the term "anticipatory grief" and make your case... I think grieving is different for everyone.
Robin


Sat Nov 06, 2010 10:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Caregiver Grief (while loved one is living)
MedicineNet.com defines anticipatory grief as "The normal mourning that occurs when a patient or family is expecting a death." I maintain that is not what we are experiencing. I effectively lost my husband several years ago. The 165-lb toddler whom I care for every day and night is not my lover, companion or mate. And he doesn't know who I am. My husband and best friend are gone. I'm grieving for REAL losses, not anticipated ones.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Nov 06, 2010 10:38 pm
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Location: Ocala, FL
Post Re: Caregiver Grief (while loved one is living)
I just read a very engaging article on the subject of 'anticipatory grief.' It is well worth reading. The author makes the point that she initially felt the term was a poor choice.

http://www.jenniferallenbooks.com/grief ... ngroad.pdf

She begins - "Who looks forward to their own or a loved one’s death?
Anticipation is something I felt as a child when the state fair opened and later
when I planned trips abroad; not a feeling I would have associated with a dying
husband. When I first learned the term: “anticipatory grief,” I thought it was a
poor attempt of the English language to name a concept that death-denying
cultures would rather leave un-named. I tripped over the word: anticipatory."

She describes me perfectly.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Nov 06, 2010 10:48 pm
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Post Re: Caregiver Grief (while loved one is living)
It was a well-conceived and nicely written article. I still maintain that grieving is different when dementia has taken them than when they are dying from some other disease. But I could be wrong. I don't feel anticipatory--I am just grieving for our relationship, when he recognized me and loved me.

If you lose your spouse to cancer, it's because they have died. You can lose your spouse to Lewy while they are still alive.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Nov 06, 2010 11:45 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Caregiver Grief (while loved one is living)
I feel the same way about my dad - the father and man I knew has been gone for quite a while, and yet we still have to watch him suffer, unable to do anything for himself, and now, almost unable to even communicate with people. I grieved for me when the dad I knew was gone and I had to become HIS parent, when he first lost so much of his abilities, but now I am grieving for him, his losses and suffering for over a year. It is hard for me to imagine when this shell of a person who was my father is gone, how I will feel. I think I will be very glad that this horrible condition he is in will not cause him any more suffering. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Nov 07, 2010 1:30 am
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Location: Minnesota
Post Re: Caregiver Grief (while loved one is living)
So....

When my father suddenly died at 48 years old, of an aortic aneurysm, I tried to pretend that nothing happened. I was in my freshman year of college 200 miles from home, so pretending was easy. It took me 30 years, until I passed my father in age, before I actually cried and truly faced the loss. I wonder if that's called "retroactive grief."

For my Mom, I grieve the loss of the woman she was, which defined the woman I want to be. Then I see a glimmer of herself remaining and I am comforted. Then Lewy takes over again and I feel the pain again. But I don't mourn the complete loss of my mother or her essence. She keeps coming back in small ways, even if it is to leave just as quickly. I saw this in her parents, too, as they made their way through dementia. Little bits of them came back at odd or at "as needed" times. I believe my grandparents were there to the end and I believe Mom is still there - I can tell by the "Mom look" she gives all of us. This is as painful as it is comforting because I'd rather she didn't realize her situation.

I wonder, too, why we need to place adjectives in front of the word "grief." Grief is grief, whether you feel it 30 years after a death or you feel it because the person you love seems gone while their body is still breathing. It hurts, regardless of when you feel it or whether it is for a spouse or a parent. No matter when, how or for whom your soul grieves, the pain you feel is deserving of respect, not over-analysis.

At least that's been my experience.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sun Nov 07, 2010 4:16 am
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Post Re: Caregiver Grief (while loved one is living)
Well said, Kate.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 07, 2010 9:53 am
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Post Re: Caregiver Grief (while loved one is living)
Kate,
I really don't think there are any rules with grief, When my Dad passed whom I was very close to I didn't cry for him for years, I was too busy holding everyone else up during that time, now I can honestly say how I miss him and some may think this is odd after all these yrs but I just had way too much going on, my Mom whom I wasn't real close with passed just 6 months after losing my husband and I felt that loss right away and I still to this day 5 yrs later think when I am in the car driving how I miss her and wish I could call her and I wish we had a better relationship !

So grief is different for us all !

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Irene Selak


Sat Nov 13, 2010 2:13 pm
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Post Re: Caregiver Grief (while loved one is living)
Irene - Not only is grief different in various relationships, but as you said, relationships with various members of the family can change through the years.

I also was 'daddy's girl' and I miss talking with him much more than I miss my mother. I have a sister two years younger than I am and we are very close at this point - but we went through a period when we were not. She remained close to our mother and was at the end the one who was mostly responsible for Mother's care.

Dale's bipolar son died in prison last year and Dale's daughter is very distant with both of us. She blames me to failing to monitor her brother's care in prison. Their mother died several years ago.

I often wonder who would take care of Dale if I took ill. All his relatives are 'distant relatives.' My own kids are closer to him than any of them.

Yes, relationships can be complicated and there are no rules.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Nov 13, 2010 3:44 pm
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