I'm so sorry, OP. Safe travels and hugs.

hugs to you, op.

OP I am so, so sorry.

OP here - I wanted to give everyone who is following my story an update.

So my dad has had a very quick and sudden decline over the last few days. he hasn't eaten since Monday, and is barely taking in any fluids. He has also stopped talking all together. His body has completely broken down. Also, his whole body is making these significant "jerking" motions. Only way I can describe it.

I am so sad, so upset...I'm crying as I write this. I knew this day was coming, but I am still not emotionally prepared for what is inevitably about to happen.

I'm looking at flights now, I want to be there by his side to say goodbye.

My father made hand gestures during his last dinner in the dining room of the assisted living facility where my parents lived. I ate lunch or dinner with them there several times a week and saw my father having increasing difficulty over the last weeks getting the soup and other foods to his mouth without spilling. He didn't want anyone to help him. Sometimes other residents commented on the mess he made as we left the dining room. He still enjoyed the dining room meals, but stopped attempting to load his fork with food and seemed content to make the gestures of raising his fork or spoon to his mouth without eating anything. I think about this often, as it was both a sad and beautiful memory of my father. He was 84 years old. Thank you for bringing up the topic.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

OP here.

At this point, the MDS is not what's going to kill him. It will be his kidneys and heart (he has amyloidosis). We believe his kidneys are declining quickly as he has started to become aggressive and very angry. It seemed to happen "just like that", if you get what I mean. From the time he was released from the hospital up until this past Friday morning, he has been completely calm, and at peace. Conversive, and a joy to be around. By Friday afternoon it was like a black cloud moved in over him. He is spewing so much venom and anger towards my mom and siblings, its honestly so hard to hear. He was always such a kind and gentle person

This really sucks.

Call his doctor. They can give him some meds to help with the anger and depression. It sounds like he really needs it. Don't let this be the way he goes out.

Thank you. I just spoke with my mom - she placed a call to the hospice doctor about an hour ago and they have just delivered the replacement medication.

Oh, I'm very glad to hear that. I've been compulsively checking to see if you responded. Thank you for posting. Hugs to you and your family. I know this is hard. I hope the change in meds makes it easier for all of you. Most importantly your dad deserves to have some peace and comfort, not pain and anger.

Thank you PP - I really appreciate your post. The replacement medication seemed to help - he is much more calm this morning. He's also having a lot of "conversations" with people who have already passed. His mom specifically, and also a cousin who passed about 10 years ago.

It is so hard, I know. BTDB. On the other hand, look at what you have done to make this transition easier for your dad. He will never be able to thank you because he doesn't even realize it but you are such a blessing to him right now when he needs your help most. Think how proud he would be of you and take comfort in that. Hugs.

OP here. yes, when he was in ICU he expressed how proud he was of all of us (his 3 children), and how much he loved my mom. And that means the world to us, it truly does. We have so much respect for him, and also for my mom. Their life story is truly an incredibly impressive one.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

OP here.

At this point, the MDS is not what's going to kill him. It will be his kidneys and heart (he has amyloidosis). We believe his kidneys are declining quickly as he has started to become aggressive and very angry. It seemed to happen "just like that", if you get what I mean. From the time he was released from the hospital up until this past Friday morning, he has been completely calm, and at peace. Conversive, and a joy to be around. By Friday afternoon it was like a black cloud moved in over him. He is spewing so much venom and anger towards my mom and siblings, its honestly so hard to hear. He was always such a kind and gentle person

This really sucks.

Call his doctor. They can give him some meds to help with the anger and depression. It sounds like he really needs it. Don't let this be the way he goes out.

Thank you. I just spoke with my mom - she placed a call to the hospice doctor about an hour ago and they have just delivered the replacement medication.

Oh, I'm very glad to hear that. I've been compulsively checking to see if you responded. Thank you for posting. Hugs to you and your family. I know this is hard. I hope the change in meds makes it easier for all of you. Most importantly your dad deserves to have some peace and comfort, not pain and anger.

Thank you PP - I really appreciate your post. The replacement medication seemed to help - he is much more calm this morning. He's also having a lot of "conversations" with people who have already passed. His mom specifically, and also a cousin who passed about 10 years ago.

It is so hard, I know. BTDB. On the other hand, look at what you have done to make this transition easier for your dad. He will never be able to thank you because he doesn't even realize it but you are such a blessing to him right now when he needs your help most. Think how proud he would be of you and take comfort in that. Hugs.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

OP here.

At this point, the MDS is not what's going to kill him. It will be his kidneys and heart (he has amyloidosis). We believe his kidneys are declining quickly as he has started to become aggressive and very angry. It seemed to happen "just like that", if you get what I mean. From the time he was released from the hospital up until this past Friday morning, he has been completely calm, and at peace. Conversive, and a joy to be around. By Friday afternoon it was like a black cloud moved in over him. He is spewing so much venom and anger towards my mom and siblings, its honestly so hard to hear. He was always such a kind and gentle person

This really sucks.

Call his doctor. They can give him some meds to help with the anger and depression. It sounds like he really needs it. Don't let this be the way he goes out.

Thank you. I just spoke with my mom - she placed a call to the hospice doctor about an hour ago and they have just delivered the replacement medication.

Oh, I'm very glad to hear that. I've been compulsively checking to see if you responded. Thank you for posting. Hugs to you and your family. I know this is hard. I hope the change in meds makes it easier for all of you. Most importantly your dad deserves to have some peace and comfort, not pain and anger.

Thank you PP - I really appreciate your post. The replacement medication seemed to help - he is much more calm this morning. He's also having a lot of "conversations" with people who have already passed. His mom specifically, and also a cousin who passed about 10 years ago.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

OP here.

At this point, the MDS is not what's going to kill him. It will be his kidneys and heart (he has amyloidosis). We believe his kidneys are declining quickly as he has started to become aggressive and very angry. It seemed to happen "just like that", if you get what I mean. From the time he was released from the hospital up until this past Friday morning, he has been completely calm, and at peace. Conversive, and a joy to be around. By Friday afternoon it was like a black cloud moved in over him. He is spewing so much venom and anger towards my mom and siblings, its honestly so hard to hear. He was always such a kind and gentle person

This really sucks.

Call his doctor. They can give him some meds to help with the anger and depression. It sounds like he really needs it. Don't let this be the way he goes out.

Thank you. I just spoke with my mom - she placed a call to the hospice doctor about an hour ago and they have just delivered the replacement medication.

Oh, I'm very glad to hear that. I've been compulsively checking to see if you responded. Thank you for posting. Hugs to you and your family. I know this is hard. I hope the change in meds makes it easier for all of you. Most importantly your dad deserves to have some peace and comfort, not pain and anger.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

OP here.

At this point, the MDS is not what's going to kill him. It will be his kidneys and heart (he has amyloidosis). We believe his kidneys are declining quickly as he has started to become aggressive and very angry. It seemed to happen "just like that", if you get what I mean. From the time he was released from the hospital up until this past Friday morning, he has been completely calm, and at peace. Conversive, and a joy to be around. By Friday afternoon it was like a black cloud moved in over him. He is spewing so much venom and anger towards my mom and siblings, its honestly so hard to hear. He was always such a kind and gentle person

This really sucks.

Call his doctor. They can give him some meds to help with the anger and depression. It sounds like he really needs it. Don't let this be the way he goes out.

Thank you. I just spoke with my mom - she placed a call to the hospice doctor about an hour ago and they have just delivered the replacement medication.

Anonymous wrote:

Anonymous wrote:My dad does this. He has Parkinsons and it a side effect of one of his meds. He also gets hallucinations from the meds as well when he's awake. He knows they are hallucinations and they don't frighten him. The hand movements at night, while odd, do not impact his sleep from what we can tell.

The doctor said the benefit of the meds outweighs the hallucinations and that he doesn't want to change the meds unless the hallucinations begin to bother my dad.

This sounds like Lewy bodies disease.

Maybe, but generally only if early in the course of the disease. It is common in late stage Parkinson’s.

Anonymous wrote:

Anonymous wrote:On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

OP here.

At this point, the MDS is not what's going to kill him. It will be his kidneys and heart (he has amyloidosis). We believe his kidneys are declining quickly as he has started to become aggressive and very angry. It seemed to happen "just like that", if you get what I mean. From the time he was released from the hospital up until this past Friday morning, he has been completely calm, and at peace. Conversive, and a joy to be around. By Friday afternoon it was like a black cloud moved in over him. He is spewing so much venom and anger towards my mom and siblings, its honestly so hard to hear. He was always such a kind and gentle person

This really sucks.

Call his doctor. They can give him some meds to help with the anger and depression. It sounds like he really needs it. Don't let this be the way he goes out.

Anonymous wrote:On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

OP here.

At this point, the MDS is not what's going to kill him. It will be his kidneys and heart (he has amyloidosis). We believe his kidneys are declining quickly as he has started to become aggressive and very angry. It seemed to happen "just like that", if you get what I mean. From the time he was released from the hospital up until this past Friday morning, he has been completely calm, and at peace. Conversive, and a joy to be around. By Friday afternoon it was like a black cloud moved in over him. He is spewing so much venom and anger towards my mom and siblings, its honestly so hard to hear. He was always such a kind and gentle person

This really sucks.

On hospice, medical care is stopped. I speak from going through this three times.

If your dad has myelodysplastic syndrome and did not get blood transfusions, then it is not good. My relative died from it.

Anonymous wrote:My dad does this. He has Parkinsons and it a side effect of one of his meds. He also gets hallucinations from the meds as well when he's awake. He knows they are hallucinations and they don't frighten him. The hand movements at night, while odd, do not impact his sleep from what we can tell.

The doctor said the benefit of the meds outweighs the hallucinations and that he doesn't want to change the meds unless the hallucinations begin to bother my dad.

This sounds like Lewy bodies disease.