Grief Before the Loss

My husband of only 21 years had strokes and was in hospice for 4 months, before he died. Every time he had a good day, or days, I hoped the doctors were wrong and he didn’t belong in hospice care. The ups and down were horrible and I was in anticipatory grief.
What helped me was seeing him every day (he was in long term care) and being supportive and as cheerful as I could manage. I bought items for his room, brought in family photos and clothing.
We talked about memories of good times and he loved looking at photos. I was a strong advocate for him, which helped a lot.
We did a number of things to make it a bit easier, such as Power of Attorney, adding a family member to bank accounts, and getting our home in my name only. We did use an elder care attorney, but you don’t absolutely have to. It gave me some peace of mind to accomplish those tasks. He got tired, easily, but loved going for a drive and getting out. At least for a short while, you are enjoying the day and not focusing on the situation. I hope I may have helped, a little. Prayers for you and your mom.

@shelbyj, you ask such good questions. Anticipatory grief is real, and it's hard. As you see the changes, you experience little bits of loss. I'm tagging fellow members like @IndianaScott @kylebar @ruthannray @djw @nancyhafer @onewyldbeemer @red77465 @otis123, who know first-hand about caring for someone diagnosed with stage IV glioblastoma. I also added your discussion to the Brain Tumor support group.

I think you have taken the first step to dealing with these unanticipated changes and grief by writing here. There aren't easy answers, but it can help to talk about it. Do you live with your mom? Are you her main caregiver? Who helps?

Hello everyone, my first time on this website. My 46 year old son had glioblastoma for 18 months, he died this past August. My daughter and I cared for him in his home for the last 6 months of his disease, and monthly before that. My daughter and I mention to each other frequently that we wish we could help others going thru this. There are things we learned and reacted to that maybe could help others. Our Doctor explained the reason there are no guidelines is that everyone is different. While that is true, we often wished we could ask someone what they did in that circumstance. My comment is if there is such a place to help others I would like to know about it because we came up with some practical solutions to some problems we encountered and we would share that with others. Thanks, my heart is sympathetic to all the caregivers. Hang in there.

Welcome, @jrfmother. It must have been so hard to lose your son, much too soon. Our children are meant to outlive us. What a gift to have your daughter support your son and you through everything.

Your doctor is so right. There are no guidelines or instructions for the caregiving journey. Every patient is different. However, there are tips to be shared and similar situations we all encounter and times that we need to know we're not alone and to hear "I get it."

If you could share one general tip for managing the grief and sadness before your son passed, what would it be?

While I watched my son lose more of his memory, I wanted him to remember how much we all loved him. On that particular day his daughter, and both of his sisters were with us and I took his hand in mine and asked him "who loves you?" He answered, "you do" . Then each of us asked him that question and got the reply. Everyday from that day until he lost the ability to speak we would ask him that question. We loved him and wanted him to remember that. I hope it worked. I think it did. I know we all felt better for telling him that everyday.

I lost my mom 3 months ago from Dementia. She had been sick for about 6 years the last three in a nursing home. I am grieving but feel like I have been grieving for the last several years especially the last 3. I have so much guilt that I couldn’t take care of her anymore and I just don’t know how to deal with it it.

@mic129, I wish that I could banish caregiver guilt. I'm confident that you did the best you could do for your mom given the circumstances. While anticipatory grief means you've been grieving for a long time, that actual loss of your mom is recent and loss is still very raw.

Be kind to the child (you) who just lost their mom. What is a fond memory of your mom that you'd like us to know about?

Too many wonderful memories to list but she was my best friend and always there for me. I took care of her as long as I could but I disappointed her in the end. She never wanted to go into a nursing home and I had promised her I would never admit her but caring for her got to the point where it was beyond what I was capable of. I will not forgive myself anytime soon. Thanks for listening. 🙁

From how you describe your relationship with her, the mother who was your best friend and was always there for you must have loved you SO incredibly much. As a mother of an adult daughter, I can also easily imagine that your mother, the person she was before dementia ravaged her memories, her sense of where she was, what was happening, who she was and you are and who she she wanted to be to you, would most definitely not have wanted you to hold the excruciating experience of managing her care on your own, in her or your home, beyond what was comfortable for you. That mother would not have wanted to extract any kind of promise of the kind from you, even if she understood that parts of her would later beg you not to admit her.

I hope time and self-compassion that you cultivate for yourself will give you a perspective that includes forgiving yourself for what you couldn’t do then. The mother in me would not want you to spend one more minute of your precious, sentient life punishing yourself, but hopes you will give yourself as many opportunities for joy and celebration of the many ways you must have delighted that mother who loved you SO much.