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I have been caring for my husband for 4 years. His condition gradually deteriorated and then took a sudden downturn to complete loss of mobility, cognitive function and hospitalization 2 months ago. Now his journey is ending as he is in palliative care with days left to live. He had a difficult last few weeks enduring discomfort and anxiety. I am so sad to see things end this way. I am exhausted from caring for him, but it is so hard to say goodbye. Any advice?

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Freddy, (((hugs)))).

You say that he is on palliative care. Is Hospice involved? Is he getting adequate meds for discomfort and anxiety?

Is there a hospice facility that he can go to?

Please feel free to come here to vent; we are here to listen.
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Morphine and Ativan was the potion to quiet them down snd a bit of comfort. Hospice may have a better solution.
you can request hospice in the home where is at.
It’s hard losing somebody,
I am sorry you are in this journey now, but just be there, play music if he like listening to music, sit with him, watch movies, listen to fun or funny podcasts.
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Do not get on the guilt train.
know now you did all you can, and there are no regrets.

I know from what I experienced and others on this forum, sometimes, a lot of times, people will pass away after you leave the room, it may be easier for them. Just in case this happens with you and husband, Do Not Feel Guilty.
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Four years has been a long time in decline. A long time for each of you. You are both tired.. Sometimes all we can do is be there for one another and that is enough. You will miss him but he will be at rest. Ask for hospice so he can receive whatever he needs to be free of the pain and anxiety. Take extreme care of yourself and know you did the best you could.
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I know that you're exhausted from caring for him, as caregiving is by far the hardest job there is. But this part of his journey is coming to an end, while your journey will continue on.
I do hope that hospice is on board now and not just palliative care as hospice is for end of life and much more supportive.
I too cared for my late husband for many many years and he ended up completely bedridden in our living room for the last 22 months of his life and under hospice care.
I just made sure that I was doing everything in my power to make sure that he had what he needed, was comfortable and knew that he was loved right up to the end. Leave nothing left unsaid.
You are going to be alright. You may not feel that way right now, but I can tell you from someone who is now over 3 years out from my husbands death that yes, you're going to be just fine.
Is it going to take time? Of course it will, but life does go on.
I will share one of my favorite sayings that I believe I got off of this forum a while back. It goes like this....."I was supposed to spend the rest of my life with you, and then I realized.....you spent the rest of your life with me."
My heart does go out to you as I know the days, weeks and months ahead are going to be tough for you. But I also know Who holds you in the palm of His hands, so do know that Gods got you and He's not going to leave you now, or ever.
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Please do consider hospice, especially in circumstances like yours.

You have lovingly done EVERYTHING that could be done, and in terms of comfort care, hospice can and will provide medications to increase his peace and comfort.

If you have any conflicts about medication, as I did, I came upon an article when my LO needed me to make these difficult decisions about introducing them, written by a clergy person who said that when a patient is suffering, pain relief should be carefully and judiciously used, but definitely administered in enough quantity that pain relief is its primary function.

Hope this is a bit of a help to you.
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I am so sorry to hear all this. I wish the hospital and hospice had been able to better control his pain and anxiety. I hope you have other family or friends who can support you through this. I wish you both peace.
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You seem to understand, and are prepared for the end. I hope he has hospice now and good medication. This will be hard because you have been joined so close given his needs of you being 24/7 at his side. I think it will be made easier by the fact you know to your soul you have done all you can do for him to the very end. And I hope it will be made easier by knowing that you do not have to stand witness to his suffering and his constant and continuous losses with no upside in his future.

It will take time. Join a grief group if you can whether in person (preferred) or online (facebook has some good support groups). You will need support. Each person's grieving journey is as individual as his or her own thumbprint. They counsel not to make any huge changes in the first year of grieving if you are able not to. Slowly move out into the world you have been missing due to caregiving.

Heart goes out to you. Wishing you the best. Hoping you will stay here and update us, and your participation on this forum would help others, and give you an outlet also.
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My husband passed peacefully in hospice. Thank you for your words of advice, they are supporting me through my grieving period. I am also caring for my dad who has dementia. My husband helped a lot with my dad’s care before my husband got sick. I am so lucky that I have a supportive brother who temporarily moved to my dad’s house took over care of my dad 4 months ago. My dad’s grief has turned to anger and when he comes to visit he has thrown food on the ground and demanded more attention from me. He had several episodes of anger with the caregiver and turned her away. It seems like his dementia has advanced with grief. Sadly, I have restricted my dad’s visits to my house as he is stressing my daughter out. My brother is going to move my dad to another city where my brother lives after my husband’s funeral. I am torn as I really can’t care for my dad in my grieving, but I will miss him. I see my dad every day. Now, it feels like I am losing my dad also.
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I am so sorry for your loss. While you likely are experiencing very raw emotions presently I suggest you find a grief support group if you feel ready.

I joined one after the loss of my father. His end came on faster than expected. I don't claim the loss of a father compares to that of a spouse. However in the group I joined there were many examples of loss of different family members and we could all come together in sharing the emotions we shared.

I hope you find some sort of closure in time and can at the very least feel some relief that the physical suffering is over.
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I’m so very sorry for your loss. You have been through so much.
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<((((((((((((((HUGS)))))))))))))
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Freddy, I'm so sorry for your double loss

Be gentle with yourself in the coming weeks and months and reach out to your dad when you feel able.

Video chats can be excellent ways to keep in in touch over long distances.
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I was in a very similar situation as you are facing. My husband had dementia for seven years, worse in the last year of his life. He passed away several months ago. In reality, he "left" us long before his passing. He did not remember me, I was just always here. I understand your exhaustion and it was difficult to say goodbye. I miss him every day. Remember your good days. Don't be angry or too upset with him. I regret the times I was angry and wish I could go back and undo those times. Take care of yourself and get some help if you can. If you are a religious person, remember that he will go to a better place, free of anxiety and pain. ((((Hugs to you))).
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Freddy,
I am so sorry for your loss and thank you for your update to us. You have guided this sad process and will be eased in grieving by knowing you did all you could. I am sorry also that you were responsible for your Dad and I sure do agree that your wonderful and willing brother take on this care now. You are all full up with needs to process all you have been through. You are so right that this is a bit of a double whammy given you feel the loss of "Dad" as well. But I am so very thankful you have your brother. Treasure him. I lost my brother, who acted as the Hansel to my Gretel in the dark woods of life, and miss him a lot. We leaned on one another throughout the trials of long life.
My heart goes out to you and I wish you the healing of time, and the knowledge you did so well and were such a godsend to your husband.
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