The agony of caring

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From: Buffalo, NY
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I am hurting so bad watching my mother hurt.
I am a nurse and I can't protect her anymore.
I don't think she is dying only suffering. I want so much for it to either go away or just let her die. I feel like I am being swollowed by blackness. It is like a web that has me and there is no way out. I do a lot of self-caring stuff. Everything gives me a respite for awhile, but then it all creeps back into my consciousness. I am alone in my caregiving. My brother is supportive but out of town. There is no one else to share her bedside vigil. She is severely depressed with her blindness and other physical discomforts. I watch her crumbling before me and all I can do is feel sad,mad, and bad for her. She is 84, weak and vulnerable. I am 55 and feel like I am not living. I only react to her needs and condition in the moment. I am tired although I sleep enough hours. I am not hungry dispite frequent missed meals. I know how to take care of myself, but it feels like I have disappeared. I have many supportive friends and many resources to help get me through this. I wish one of them could tell me when this is going to end. Writing like this gives me comfort. thanks !!!!!!


Posted on 2001/6/16 19:19




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From: Rowlett
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Dear Arlene,
Your story touched my heart in many ways . . . I feel sorrow for the struggles and suffering that your mother and you are experiencing during this time. You mentioned that you have many resources and support, which is very good, but, it also sounds as though the pain of watching your mother's discomfort is almost overwhelming. It can be so hard to be with someone you love who is experiencing pain or misery. After my father suffered a massive stroke, those six months that I cared for him were so difficult, mostly, because I felt so helpless to really help him, despite the physical therapy, skilled nursing, and medicine for pain control. I, too, was blessed with support and resources, but still felt great pain for my father's experience - it was as if he was trapped within a body that failed him.
So, I felt anger, grief for the father I once knew and the relationship that we had, sorrow for his pain and guilt for being unable to "fix" his pain (of soul, spirit, as well as body).
All the resources in the world were unable to really help . . . except for those family members and friends who allowed me to share my feelings and were there for me when I needed something - sometimes, being able to just talk and cry lightened the pain somewhat and I felt a little more energy and love to care for my father.
Please take time out for yourself and let others help when they can so that you, too, will have enough of "you" to continue caring for your mother. Do you think that perhaps a caregiver support group would be helpful? Oftentimes, faith communities and/or senior centers offer these types of support groups and they can give you the opportunity to find nurturance,perspective, and insight from the experiences of others.
Also, please keep in touch - we genuinely care about your mother's and your welfare and well-being. We will certainly keep you and your mother in thought and prayer, Arlene. Most sincerely yours, Barb


Posted on 2001/6/17 10:17




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Barb,

Thanks- it is nice to feel understood and heard. When someone will "witness" for us, it is so affirming to where and who we are in that moment. I know there are a lot of lessons to be learned by caregiving experiences. It is a professional role that has enriched my life. I have done a good job as the support giver, and I feel very comfortable in other people's pain. There is a part of me that can't settle long enough to handle my own. I know I am learning to do that, but I am very impatient with myself. I am a Clinical Psych Nurse Specialist and was a consultant for 31 years to the medical surg units at a large hospital in Buffalo NY. I have witnessed a lot of suffering and never lost my compassion for others. I am so glad I found that same compassion for my mother.

Thanks Barb for writing.
arlene



Posted on 2001/6/17 14:09




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Arlene,

My mother died a week ago after an extremely long and painful illness. All I can tell you is that no matter what you are going through now, when it's over you'll be glad you were there for her.


Posted on 2001/6/25 13:48




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SG:

We want to wish you our condolences on the death of your mother.

We are glad that you have the comfort of having cared well for her. Your thought here is simple yet deeply profound.

Let us know if we can help....


Posted on 2001/6/25 15:47




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SG

I am sorry about your mother. Thanks for sharing your thoughts about how it feels after all the caretaking is over. Your mom was lucky to have you. I think when all is said and done, we learn what life is all about. It's about how much we loved and what we learned. Maybe that's too simple, but it works for me. Be very gentle with yourself in the weeks ahead, and also remember to go as fast as the slowest part of you needs to go.
arlene



Posted on 2001/6/25 20:37


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I wrote my first post June 16th of this year.Today my mother went into a coma. The last 5 months have been an exhausting journey.
I do want to thank SG for writing a response to my post. I kept remembering that there would come a day I was thankful for my endurance. I am already feeling that way.
Shortly after my mother got so sick in June, my father-in-law had a stroke and began a similar end of life journey. They are both dying in different nursing homes. My role is now one of witnessing their transformation, and I know they will make it safely. I have been there for both of them, and it feels really good to know that. My father and my mother-in-law died a few years ago. It is very consoling to know they will be there to "take over" for me.
The past 5 months has left me drained and numb, but in a strange way I feel full of my own healing from it. I have done a lot of "finishing" and a lot of processing. Please keep me in your thoughts as I facilitate their "last lap".
Incidently-- this site taught me that playing games gave me moments for refocus and relief from the heaviness. So thanks for teaching me that.
Blessings
Arlene





<font size=-1>[ This Message was edited by: arlene on 2001-11-23 18:32 ]</font>


Posted on 2001/11/23 18:00




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Dear Arlene,
I am so sorry that your mother is in a coma . . . your mother, you, and your family will be in our hearts and prayers . . . may there be some small comfort for you in knowing that we do care and are close in thought and prayer.
With blessings for all - Barb and Mike


Posted on 2001/11/23 19:23




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On Saturday my father-in-law died. Last night my mother died. We had one funeral today, and the next one will be on Saturday.
I am numb, but so grateful that I completed the "last lap" with both of them. I am so
grateful that they have been freed by their death. I take comfort that they are no longer suffering and have found peace.

It is now time to rest, grieve for myself, and remember that I did a wonderful job "deathing" them through the end stage of life.

Thanks for giving me the opportunity to say this.
arlene


Posted on 2001/11/27 20:06


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Dear Arlene,
Please accept our deepest condolences regarding the deaths of your father-in-law and of your mother. Our hearts grieve for your loss . . . I can't begin to know how difficult this time must be for you right now. In the weeks and months ahead, may you continue to find comfort in knowing that you were there for them when they needed you. Also, our prayer will be for you and your family that you may find solace in the care, nurturance and support of all who are concerned for your well-being. With warmest regards and blessings, Barb and Mike


Posted on 2001/11/27 21:22




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Dear Arlene,
It is good to hear from you . . . however, I am sorry for your grief.

I'm not sure that I have ever heard a better way of phrasing what it feels like when we are going through a grieving process . . . that you are "sitting" with it, like a friend at the kitchen table - that is just beautiful!

After my father died in 1984, I remember thinking that this was the worst pain that a person could possibly experience. As I continued to work through my loss, I found that the feelings of pain changed also. Then, when my mother died years later, I revisited many of the same grief-related feelings, but of a different shape and nature. This was all a learning experience on many levels. However, by allowing myself to experience the harder feelings related to missing them so much, I also allowed myself the feelings of healing and growing through the loss. Marker dates, such as birthdays or the holidays, continue to tug at my heart - reminding me of the special connection that we shared and continue to share in a different way.

Thank you for sharing your thoughts . . . it sounds as though your journey through grief has illuminated areas in your own life, too. Please take care - and maybe, on Mother's Day, you can plan on honoring the place your mother shared in your life while celebrating the place you share in your children's life. Many blessings to you and your family, Arlene.
Barb


Posted on 2002/5/8 22:38




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It will soon be six months since my mother died. I just re-read my many postings during that time. It helped so much to write about how I was feeling. Now I realize just what a "dark night of the soul" I was having. Grieving takes time. At first I wanted it to be over. I thought that was all I needed was to have it over. Then I realized that the process takes its own time in its own way. I am not struggling to have it over. I find myself "sitting" with it, like you would do with a friend at the kitchen table. Sometimes remembering the agony in a flash back, and other times just telling myself that I did the best in an extraordinary situation.
Sunday will be Mother's Day. It will be the first time in all my 56 years that I will not be with her on that day. My grieving takes the shape of an extrication. I am separating myself from her and finding out who I am.
A good part of my life has been spent taking care of her in one way or another. So Sunday I will celebrate my own role of being mother to two adult children. For the first time I am free to feel and celebrate my own beauty of motherhood. I will always be grateful for the life my mother gave me in childbirth. On Sunday I will light a candle for her as I celebrate motherhood.


Posted on 2002/5/9 11:21




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