bergdorfblonde - update 9/13 Gary health top of OP

Thank you so much, Jenjie.  This is the hardest thing I have ever done.  I pray for bergdorfblonde as well as you.  I have followed your posts all these years and you are so kind. I appreciate your caring and compassionate heart.

I’m so very sorry. I don’t have any words of wisdom, I can only offer wishes of love and peace. I know what you’re facing is absolutely heart wrenching and that there is no easy way through it. I know that my family will be in your position and I’ll be in Gary’s someday too soon for our liking so I truly understand what’s being asked of you. These decisions are so hard when you’re dealing with the actual ups and downs of treatment. You have shown such courage and grace and I know that when it counts you and Gary will know what’s right.

Before my Mom passed, she had 10 days of home hospice and about 36 hours in a care center. The intent was to keep her at home, but my Dad and I were starting to struggle because she still wanted to go to the bathroom and such, but didn't have the energy and we didn't feel confident in our ability to move her safely. A spot opened up in their smaller, newer, more hotel-like facility, and my Dad, my husband and I mutually agreed to have her transferred.

Prior to entering hospice, she was in a hospital for 3 weeks, home for 2 days and back in the hospital for almost a month. I wish that instead of those hospital stays we just had done hospice care. I think her final days would have been more satisfying and ours as well. I can't remember the exact phrasing but in the hospital, care is about extending life, while hospice is about comfort. In the hospital, she was given a high dose chemo, which did extend time enough for her family to come and visit, but it killed her blood cell counts, so even though she was feeling somewhat better, she couldn't go home which is what she wanted. When her counts improved, she no longer felt as well. She got constipated, and they felt the need to treat it, unfortunately it didn't really kick in, until she was home, which meant I had to be the one to deal with it. Memories I would rather not have.

The hard part is stopping treatment feels like giving up. It's not. By the time things had gotten to that point, so, so much had been done. Unfortunately, it didn't work. That chapter came to a close. Accepting, that you are in a new chapter is part of the challenge and struggle. I did better at this part than my Mom or Dad.

Day 1 at home, we kept up with all the normal meds, but it quickly got whittled down to her asthma inhaler, an anti-anxiety pill and her pain meds. Plus, the meds in the hospice box when you are close to death.

A warning about the pain meds. My Mom had lymphoma which caused very painful tumors, and one was on her back, that was a real problem. We ended up in a situation where the dose of pain meds she really needed made her incoherent (I wasn't there for this, my Dad and her brother were, and it was very unsettling to watch) or they knocked her out completely. When we transferred her to the in-patient hospice, they gave her the fentanyl patch of the higher dose, and so she was unconscious and never woke up. The last words I said to her was trying to explain why we were moving her and even though I kept telling myself we were doing the right thing for us, the living, they still haunt me that I never got a chance to say a real goodbye to my Mom because of needing to focus on managing her care.

Don't wait for a "good day" to talk, and laugh, and reminisce, say what needs to be said, because today may already be the best day left. Let someone else do the work of managing care as much as offered. Home hospice is nice to a point, but the home care nurses aren't there all the time so it can fall on the family who is also trying to figure out how to say goodbye and grieve in advance. It's very exhausting.

I have been following your family's journey and I'm sorry that it has come to this point so quickly. In America, we focus so much on how to live, I think we do our people a disservice by not talking more openly about how to die with grace, dignity and without regret. Going through this journey with my Mom, taught me so much about how I don't want my final weeks to be. I hope all the advice you are being given will help you and Gary walk this final path.

I am so sorry to read the update.

To everyone of you that has gone through this (((big hugs))).

For me, accepting dad’s end of life diagnosis (fuckcancer/glioblastoma) was the single hardest thing i have done so far. My mom was a champ through it all and spent 24/7 sitting next to him, holding his hand, talking and reminiscing and even just watching tv or reading to him (trying to decrease the stress of the situation) as much as possible.

I regret not being able to stop the tears so i could talk to him more. I thought my tears would upset him, so i spent much of his last days crying outside his room as opposed to sitting on his bed or holding his hand.

So if there’s anything you can get from my experience i would say get in as much time as you can. Be strong for him. We have your back. We’re here for you.

We discussed hospice options after we were told my husband was unlikely to be able to do any more treatments. One of the choices we had to make was going to a hospice facility or going home with hospice support. My husband made the choice of the facility - because he didn’t want me to have the memory of him dying at home. 

it was an amazing place; would have been wonderful if you were there for a different outcome. Perhaps the best thing is that I could be his wife, supporting him, supervising in a way, but leaving the caregiver part to the professionals, who made it as comfortable as possible. I stayed in his room, which was spacious and had room for a sofa bed and wonderful recliners, only leaving once in the eight days he was there, to come home and pay bills, do laundry and take down the Christmas decorations with the help of friends. Family members and friends were with him while I was gone. 

I made the decision at the hospital, before he was moved, that helping him die peacefully and comfortably was the last gift I could really give him, the last thing I could do while he was still with me. Friends and family visited, and we had quiet times together. I do wish I had talked more to him those last days. At the time, I didn’t have the feeling that we had things that needed to be said, but since then I’ve regretted not talking more. In the end, there’s never enough time.

Prayers for you both as you navigate this one day at a time

Praying for you both. (((Hugs)))

My thoughts are with you both. I have no great words of advice besides what others have said. Just be with him and let others care for his physical needs. 

When I lost my sweet husband, almost 2 years ago, the Peas were an amazing source of support. Please continue to let us know how we can support you. 

I'm so sorry to see this update! My mother in law was in Hospice for 24 hours when she died from COVID. I can tell you that the stopped all treatments, turned down her oxygen and stopped giving fluids. They explained that she was not suffering or experiencing thirst or hunger and that withholding all of that actually helped her to pass more peacefully than she would have with all the extra treatment.

@bergdorfblonde and lots of 💚💚💚

I can tell you that the VA doesn't pay the funeral home, they reimburse the family the cost but not in all cases. My husbands uncle was a Veteran and I know his wife was surprised that it wasn't a guarentee. Here is the link that explains it all. 

www.va.gov/burials-memorials/veterans-burial-allowance/

Th