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.