Feeling guilty about hospice and husband passing away

I am so sorry for your loss. Guilt often goes hand-in-hand with grief. We try to second guess ourselves over every decision we made, even though those decisions were made with only the best of intentions and using the information available at the time. Please know that you did your very best. You were an exemplary caregiver.

ALZ/VD and diabetes are terminal illnesses. The medications that he was on prior to hospice placement were not going to prolong his life beyond the limits of these diseases. You wrote that he was already declining significantly before receiving hospice care. The human body is a wonderous creation. It knows instinctively how to prepare itself for death and begins shutting down. Hospice care does not hasten that process but does provide medications to make the process less stressful for the patient.

Praying for peace and healing for you. ((Hug))

@SBL83 : I am sorry for your loss. I think you did everything right for your DH.

This article has a summary of 3 studies that showed patients on hospice care live longer and better than patients treated conventionally. Two studies were in cancer patients and one study was in heart failure patients. Does this apply to dementia patients? I don't know.

https://www.hopehealthco.org/blog/the-surprising-truth-some-patients-live-longer-on-hospice-care/

I don't pretend to speak for everyone but I cannot understand wanting my spouse to live longer in stage 6 or 7. I would not want to live in stage 6 or 7. My wife is easing into stage 6 and I do not want her to live longer. I want her to die soon and as painlessly as possible. This is also consistent with her wishes which she expressed to me soon after diagnosis 8 years ago.

SBL83,

Prior to her passing a few months ago, my DW was dealing with EOAD, advanced stage cervical cancer, and type 1 diabetes. She was in MC for the last 8 months of her journey. I brought in hospice for the last few months of her life and they were a great help. As her condition went downhill, her MD, the Director of Nursing, hospice and I reviewed her medications against her condition and stopped the ones that were deemed no longer advantageous. A few days before she passed, we even stopped her short acting insulin since she was no longer eating or drinking, and only gave the long acting insulin.

Please don't feel guilty about your choices regarding hospice, medications, or anything you did or opted not to do as your DH's caregiver. I know by experience that the loss of a spouse is so very hard. Grieve and allow yourself to slowly heal. Know you are not alone but are cared for by those here and by your creator.

Tom

SBL83, I came here tonight because my husband passed 2 days ago in memory care. He was diagnosed in 2021. I had planned on keeping him home as long as I could but I was diagnosed with rare aggressive breast cancer in December & had to immediately place him. He was in a VA facility and getting excellent care. He declined rapidly in the last 6 months and more rapidly in the last 6 weeks. He became totally incontinent, bedridden & almost no communicative. More recently he forgot how to feed himself & would forget to swallow. They downgraded his diet to soft & then puréed food but it didn’t help. He was unable to swallow at all, even liquids so he aspirated. We never got to call Hospice. The facility asked me if I wanted him transported to the hospital. I said no. They would merely treat him & return him to memory care where he couldn’t swallow & aspirate again. The only option would be a feeding tube and he would not want to live that way per his wishes. The facility initiated hospice protocols but did not have time to stop any of his other medications. He was also diabetic and on so many medications. So please don’t feel guilty. Nothing you or they could have done. My husband’s decline happened so quickly. I am heartbroken but I’m thankful he’s no longer suffering from this terrible disease. Wish I could give you a hug. I know exactly how you feel. He was lucky to have you.

There is no crystal ball that will tell us when we are going to reach the end of our lives. Nobody knows when, but a lucky few get to say how. By making the loving choice of hospice you got to say that he would pass in peace and comfort, and with dignity. No machines, no tubes, no pain, no crowds of strangers.

In your situation you made the best possible choice. Comfort and dignity matter so much more than any additional end stage disease days.

No guilt from us, only admiration for how you protected your husband when he was at his most vulnerable.