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Dementia Caregivers Grief Soul Deep, Defies Labeling

When a beloved elder dies, we may have varying reactions, frequently changing moment by moment. Naturally, there’s grief and the realization that we’ve seen the last of our loved one’s physical presence. Often, however, if the death follows a long illness or significant pain, we can also feel a sense of relief that their suffering is over and we can get on with healing. It’s often the in between time – the caregiving years – that are the most difficult to label.

Read more on HealthCentral about dementia caregivers' grief:

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Hi Dolores,
My heart is with you and I'm grateful for the wisdom that you've shared in this comment for others. We who've been through this know, on a cellular level, what this means.

Thanks for your kind words about my article. Anticipatory grief never "did it" for me, either. This is something quite different. As I said in the article, there really isn't a satisfactory label for it. It's simply too deep and too personal.

I, too, am a huge supporter of the amazing care that hospice can provide, as well as their support for the family.

Blessings to you this holiday. Thank you for the gift that you just presented many readers.
Carol

My mother died at age 96 on 12/14/2014,at 7:10 PM. She probably had dementia for 20 years. While I appreciate the terms anticipatory or ambiguous grief. It is your description of soul deep grief that resonates most with me. She was my best friend, strongest supporter, fiercest defender, partner in crime - primarily practical jokes, and the greatest source of comfort when life threw me a curveball. For the many who have luckily not had to go through this experience it is difficult for most to understand the constant, never ending, crushing grief that you experience as you watch someone who is so dear to you die by inches before your eyes. As you embark on this dreadful journey the number of negative feelings you experience is terrible. It is not just grief. There is anger, resentment, fury, shame, guilt, helplessness, despair, and anguish. I have felt all of these at some point or another toward myself and most painful of all towards my poor defenseless mother. Exhaustion, you are always tired it seems. As my mothers condition worsened so did my migraines. I was raising three young sons who would never perceive the woman I loved so much, as anything but annoying, disgusting, crazy, intrusive, embarrassing, and restrictive to our lives. Yet another source of anguish. My mother adored my sons. Her patience with them was endless and my oldest was extremely ADHD. She wasn't perfect no one is but she came pretty damn close. I was told by many at one support group meeting that it was okay not to like my mom, because in essence she was no longer my mom. She was a stranger in my mother's body. It helped so much to hear that. The guilt that was always with me eased somewhat. Because they were right. This woman looked like my mom, but she would have been appalled by her behavior. So often people have said that this is such a cruel disease. It is. It is like a form of torture for the caretaker. Thankfully my mom didn't know what she was doing. In the first moments after her death I felt relief. She was finally free. No longer entombed in that living death. I saw her happy and carefree with her sister and mother. I felt calm and at ease, able to laugh and joke until yesterday. I went to Home Depot with my son and the the grief that has erupted has been debilitating. Xmas is days away and I just can't get into the spirit. I feel like I'm letting my family down even though they are treating me with extra tlc. And that is the second worst feeling after the grief, always second guessing your actions. Did I do enough? Did I take her to the right doctors, the right assisted living, the right nursing home, choose the best hospice care? I didn't even know that hospice was available for dementia patients. When my mom was hospitalized because of a seizure it was the first time I received any information. Between 11pm that night and 2pm the next day 4 doctors discussed why hospice was appropriate for my mother. At 2:01 I had signed up my mom with a hospice service. I will forever be grateful for the hospice service. It has been a fabulous support system. I already knew that she was at an outstanding nursing home. Between the fabulous nursing home employees and the excellent hospice staff they helped to prepare me for what was to come. There was always a shoulder to cry on and someone to console and encourage me. I was no longer alone. I've managed to stop beating myself up about my shortcomings. At the nursing home I was made to feel like part of a new family. My mother's social worker was my social worker. The hospice team that was assigned to take care of my mom embaced me as well. I now had a whole team of knowledgeable experts to help me make some of the very difficult end of life decisions for my mother. I still feel enormous grief but I have started to look back at all the guardian angels that helped me along the way. I am counting all my blessings, all the wonderful residents of the nursing home that became my friends and all I have learned. There is finally an end in sight for this horrible grief. Over 70 of the staff and residents at the nursing home stopped to tell me how much they loved my mom, what a difference she had made in their lives. So many thanked me for sharing her with them. Within moments of her death her room filled with employees all trying to hug and console me. It was SRO. They were praying for me, praying for my mother. I finally said "I do get to cry a little bit don't I?" We all started laughing. So in such a sad moment I found a deep feeling of joy. My mother was deeply loved. We were not alone. I have volunteered to work at the hospice office. I will return to the nursing home to visit the friends I made. And I know I will be happy again and the image I have in my mind whenever I think of mom is the vital, funny engaging woman that she was. For all of you that are out there suffering that agonizing grief you are not alone. Don't isolate yourself as I did. There are many resources available search the internet, if you don't have a Computer ask at the library, try your local or state agencies. Check out your local churches, senior centers and community centers. Hospice is covered by Medicare and Medicaid. Help and respite is out there. It's up to you to reach out and ask for help. It is amazing what complete strangers will do for you.

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