Loss and Grief in Caregiving

"Sometimes good and happy times get stirred into the mix." ...... I just started reading "Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief" by Pauline Boss. I've been flying through it seeking answers and comfort to my grief, fears and feelings of loss. I know I will need to go back and more slowly digest the ideas she is presenting but something that truly resonates with me is ambiguous loss -- "the duality of your loved one's being absent and present at the same time is confusing and finding meaning becomes immensely challenging." (p1) .... ambiguous loss offers no possibility of closure and with dementia it is continually changing. As first a wife and second a care giver, I am being asked to accept ambiguity in our relationship as the new (ever changing) normal -- stressful, absolutely.... along with all of the other emotions that come when something is outside of my control and I am having to make decisions that impact both of us forever... but simply having someone recognize and label "ambiguous loss" is helping me to feel less alone in this bizarre world we have entered.

@IndianaScott
I will begin with an experience very different from yours, but, nonetheless, the source of very deep grief in my life.

Many, many years ago, before I met my husband, I loved someone. He died in a car accident one night when I was not with him. This may not sound like a major tragedy to many people, but I loved him fiercely, and it nearly killed me. Really, it nearly killed me. At that time, I was working for a government agency where there were many social workers, and one was a friend of mine, who encouraged me to begin to attend group counseling meetings for people in grief. I didn't want to go, and, actually, am not advocating that sort of thing. But I did go to one set of sessions, and learned this: Grief is very personal and individual. Everyone grieves differently and for different amounts of time. Each person who is grieving has to do whatever THEY have to do to get through it.

At that time, I was lucky to still have my mother and my sister, both of whom have since passed, and a couple of dear friends, all of whom were right there with emotional support. For me, it helped to talk. They must have earned their wings during those days, weeks, months, and years, and during that time I just eked by, going through the motions of life. Then, one day, someone said something that, somehow, made me laugh - just a little. At that point, the sound of my little laugh was so foreign that it sounded odd, even to me, and I cried some more. But then, in time, it happened again, and, eventually, again, and so forth.

But, my big point is what I learned at those dreadful grief counseling sessions: Grief is personal. Grief is different for everyone. A person has to do what THEY have to do to get through it. Learning to live without a loved one in your life, and/or with the circumstances of their last days and passing, is a process. It takes time.

I still miss my father, who passed 41 years ago, after suffering Alzheimer's for over a decade. I still feel the loss and pain of watching him go from being a proud, well-mannered, dignified, leader, to the shell of a person that he became.

I still feel the horror of having to relegate my mother to the care of a nursing home for the last year and a half of her life due to paralysis after a stroke - with experiences that are far too long and troublesome, and too disturbing to go into here and now.

And now, my husband, the love of my life, has dementia, and it is, again, very difficult to watch this happen to him. But I just keep going. Things keep changing. Sometimes good and happy times get stirred into the mix.

My thoughts are with you. Just keep going. Things will change.

Thank you for this site, and for all of the opportunity it offers to those of us who just need to talk sometimes, and to, possibly, offer something that may help others.

Macbeth

@IndianaScott
I will begin with an experience very different from yours, but, nonetheless, the source of very deep grief in my life.

Many, many years ago, before I met my husband, I loved someone. He died in a car accident one night when I was not with him. This may not sound like a major tragedy to many people, but I loved him fiercely, and it nearly killed me. Really, it nearly killed me. At that time, I was working for a government agency where there were many social workers, and one was a friend of mine, who encouraged me to begin to attend group counseling meetings for people in grief. I didn't want to go, and, actually, am not advocating that sort of thing. But I did go to one set of sessions, and learned this: Grief is very personal and individual. Everyone grieves differently and for different amounts of time. Each person who is grieving has to do whatever THEY have to do to get through it.

At that time, I was lucky to still have my mother and my sister, both of whom have since passed, and a couple of dear friends, all of whom were right there with emotional support. For me, it helped to talk. They must have earned their wings during those days, weeks, months, and years, and during that time I just eked by, going through the motions of life. Then, one day, someone said something that, somehow, made me laugh - just a little. At that point, the sound of my little laugh was so foreign that it sounded odd, even to me, and I cried some more. But then, in time, it happened again, and, eventually, again, and so forth.

But, my big point is what I learned at those dreadful grief counseling sessions: Grief is personal. Grief is different for everyone. A person has to do what THEY have to do to get through it. Learning to live without a loved one in your life, and/or with the circumstances of their last days and passing, is a process. It takes time.

I still miss my father, who passed 41 years ago, after suffering Alzheimer's for over a decade. I still feel the loss and pain of watching him go from being a proud, well-mannered, dignified, leader, to the shell of a person that he became.

I still feel the horror of having to relegate my mother to the care of a nursing home for the last year and a half of her life due to paralysis after a stroke - with experiences that are far too long and troublesome, and too disturbing to go into here and now.

And now, my husband, the love of my life, has dementia, and it is, again, very difficult to watch this happen to him. But I just keep going. Things keep changing. Sometimes good and happy times get stirred into the mix.

My thoughts are with you. Just keep going. Things will change.

Thank you for this site, and for all of the opportunity it offers to those of us who just need to talk sometimes, and to, possibly, offer something that may help others.

Macbeth