Feeling guilty about hospice and husband passing away

SBL83 · August 13

My wonderful husband passed away August 3rd. I miss him terribly. He was 71, and he had been diagnosed with early onset Alzheimer’s about 9 years ago. He also had diabetes and vascular dementia, along with some other health issues. I am fortunate that I was able to keep him home the whole time, and I was able to work ( I taught close to home and was off in the summers). He slept most of the time I was at work once the disease had progressed to stage 4 and 5 etc., and was home by 3. I had cameras all over, inside and out. That helped so much. I was so glad I was able to take care of him at home. I had to leave my job in January because he was declining significantly, and I needed to be home. By March, he could barely walk, and swallowing some pills and certain foods was becoming a problem. The doctor recommended a hospice evaluation, and he was approved. They were very nice and helpful, and he stayed in hospice care at home until he died August 3rd. Their visits were helpful, but I am feeling so much guilt now. I worry that he died sooner than he would have because he was in hospice. They took him off almost all of the meds he was on. Ativan and morphine were added for agitation and pain. I did not use the morphine much. Ativan was mostly just twice a day. The last two weeks of his life, he mostly quit eating and drinking, and then quit talking. He was having respiratory distress the last day. Hospice increased the Ativan and Morphine then. Once his breathing got better, he passed await that afternoon with me holding him. I worry that having him in hospice caused him to die sooner,though I’m sure it did help with pain. The hospice staff was wonderful, but I’m curious if anyone else has felt this way.

Thank you,

SBL83

Russinator · August 13

I'm so sorry for your pain. In my opinion you did nothing wrong.

SBL83 · August 13

thank you!

fmb · August 13

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 · August 13

Thank you so much for those kind and helpful words. I did feel like his body was shutting down for several weeks before he passed away. They kept telling me his regular meds were no longer helping him, so they were all stopped one by one over the last few months. That was hard on me I do think they managed to keep him comfortable.

Again,

Thank you .

midge333 · August 13

@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.

ImMaggieMae · August 13

SBL83, I am so sorry for your loss. If the medications he was taking were no longer helping then there was no reason to take them. Ativan kept him calm and the morphine helped with any pain he was experiencing. It sounds like hospice did the right things. It was his time. His body was shutting down. But the two of you fought for all those years and you did the very best you could. You kept him in his own home and you were there. I think it’s normal for us to feel guilt sometimes. No matter how much we try, we think there is something we could have done better, something we missed, something we should have thought of, times when we should have had more patience no matter how tired and frustrated we are over this illness. He was so lucky to have you. I have so much admiration for you. Try to focus on memories of happier times now. I wish you peace.

Rocky2 · August 13

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

terei · August 13

Factually, people with the same issues actually live longer on hospice than when they are NOT on hospice. So, no, making him comfortable in his final weeks did not shorten his life.

Crkddy · August 13

SBL83, I am so sorry for your loss. It sounds like you did your best for him. That's all any of us can do. You were obviously a wonderful caregiver, which we all know is such a difficult part of the journey. Peace and love be with you.

GothicGremlin · August 13

@SBL83 I'm sorry for your loss.

Please don't beat yourself up for decisions you've made, especially regarding hospice. If your hospice team was anything like the hospice team I had for my sister Peggy (who was also EOAD, and passed away a few months ago at age 64), they were amazing. I felt like they increased the care my sister got, and there were certainly more eyes on her - a good thing. They just eased her pain and anxiety. That's probably how it was for your husband too.

I'm not casting any stones you're way about your feelings of guilt and second-guessing yourself - I'm the poster girl for those things. 🙂 But, now that a bit of time has gone by since my sister passed away, I have some perspective. We did everything we could for her, including getting her hospice care. I have no doubt they helped her, and didn't hurt her.

Also, just so you know, Peggy was approaching mid-way in stage 7 - it was a bear - for her, and for all of us. I really wished she had passed away sooner so that she would have been spared that experience.

SBL83 · August 13

Thank you everyone for your very kind and helpful comments. It makes me feel better to hear all of your stories. I am sorry for all that you all went through or are still going through. Your comments give good perspective, and it is helpful to hear all of your stories. I think my husband was about halfway through stage 7 when he passed away. I felt as though he was wasting away before my eyes. Even when he was still eating, he was losing so much weight, and his legs etc were so thin. It made me sad to have him confined to a bed, but it was for his own safety. He could no longer walk or stand, and he would fall if he tried. I would recommend the hospital bed, if hospice recommends one. It was very helpful.

To those who said they didn’t want their loved one to linger in the final stages for long, I understand that. It was very hard to watch, and I’m glad for his sake, especially, that it didn’t last longer. I agree that after some time has passed, I will realize more that I did all I could, and that hospice was helpful.

My heart goes out to everyone dealing with this sad disease, and I especially feel bad for those who linger in the later stages for years. That is so hard on the patients, family etc.

I am lucky in many ways, especially in that he knew me until the end and that I got to keep him at home, and I think hospice helped a lot with agitation and pain.

Thank you all for your nice and helpful comments. I wish all of you the best , and good luck to those still caring for someone . It is a hard journey for everyone, and I’m forever thankful for everyone here.

Fondly,

SBL83

midge333 · August 13

He was very lucky to have a caregiver (and wife) like you!

Gtgservices · August 13

He was exceptionally blessed to have you! It's easy to second guess, but from what you described, it sounds like the very best scenario! As much as we want our person to still be here, their quality of life is what is most important.

Remember the love. Embrace the grief. Love came first! Bless you, and everyone going through this journey!

mrahope · August 14

You did the best you could. Please remember that dementia itself is invariably fatal, so providing any comfort that is available is the kindest thing.

SDianeL · August 15

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.

SBL83 · August 15

https://alzconnected.org/discussion/comment/219211#Comment_219211

Thank you so much.

Denise1847 · August 15

https://alzconnected.org/discussion/70271/feeling-guilty-about-hospice-and-husband-passing-away

It sounds like you were a wonderful caregiver and wife. If I were in your DH's situation, I would have wanted to go without pain and anxiety and as soon as I could. Think about what you would want if it were you. You were the best! You do not deserve guilt. I am so sorry for your loss and I pray you will heal and have peace.

SBL83 · August 15

Thank you so much. I hope all of the fond memories will overtake the grief with time. I miss him so much.

SBL83 · August 15

Thank you. That’s true. It’s an awful disease, and I tried my best to keep him comfortable.

SBL83 · August 15

Thank you so much for sharing your story. I am so sorry for your loss. I know that must have been so hard. Your husband’s last 6 months and last 6 weeks sound a lot like my husband’s. The decline happened so fast. I just thought we had more time. I am glad that he is not suffering anymore , and I’m glad your husband isn’t either. It was painful to watch the suffering and decline. It’s such an awful disease.

I am sorry you are having to deal with breast cancer too. Life just seems unfair sometimes. I hope that treatment is helping you reach the best possible outcome and that you are feeling ok. Dealing with the loss of your husband on top of fighting cancer has got to be so hard . I wish you the best!

Sending you hugs and prayers!

SBL83

PlentyQuiet · August 15

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.

midge333 · August 15

@PlentyQuiet:

Well said!

SBL83 · August 15

https://alzconnected.org/discussion/comment/219423#Comment_219423

Thank you so much. I agree, that was well said . Thank you for your kind and comforting words.

SBL83

Feeling guilty about hospice and husband passing away

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