Anonymous wrote:

Anonymous wrote:Read the book Being Mortal. It might help with decisions. There is no right it wrong path.

What are you saying? Put her down? It sounds like she's still going (pretty) strong.

I don’t think we are legally allowed to do that in the US? Some European countries allow it now. Switzerland etc.

🤗

Thanks for all the kind words, suggestions and sharing of your own stories. No one equips us for this. Today was especially hard- my mom has weird reactions to narcotics and they gave her a “baby dose” of oxy to get her prepped for PT and I could see that hospital delirium come back. She was a total nut, it’s super horrible for me because she takes her crazy out on me, and she won’t remember a thing and I’ll be traumatized with the memories. And she was a zombie for PT. So no more narcotics she’ll just have to push through the pain.

I am very worried about the endoscopy. They ruled out an active bleed with the CT but anesthesia set her back 4-5 months last year and she never made it back to her baseline from prior to the anesthesia. So I need to think on whether the juice is worth the squeeze. And have a frank discussion with my brother. I am the POA and my normal mom would never want to be living like this. She’s told both of us she hates what’s happening to her, she’s had a great life and she doesn’t see the point of moving on. She’s always been very clear on her feelings but I need my brothers blessing because this is an important decision and it’s just too much responsibility for me to make this decision on my own. So I have a lot of thinking and pros and cons to work out. Realistically the endoscopy will keep her in the hospital for several more days due to how I know she’s going to respond to the anesthesia. And that’s several more days she’ll be in bed and not moving her muscles. Without it we may be able to get her into a SNF rehab which is my ultimate goal.

But they think the fall was caused by the internal bleeding making her dizzy and lightheaded. So if she goes to rehab without us getting an answer or maybe getting something fixed then this could happen again. So I’m completely torn.

Thanks for the suggestion of palliative care, that is a way easier term to swallow. I already did have to tell the hospital not to take any lifesaving measures if she were to stop breathing. That was hard. But I know it’s what she wants. Thanks again, I hope you all have a merry Christmas.

I second the suggestion to read Being Mortal.

Op, keep an eye out for a doctor who you click with. I found the range of medical intervention offered/suggested/recommended varied. Or a nurse. If you form a bond with someone, who is experienced, and you think reasonable - ask them for as much advice as you can to navigate this.

Also, I hate to add to your stress, the anethesia from getting scopes could make dementia worse and can set off aspiration pneumonia. See what the Dr. would do if it were his own elder. What does she/he think might cause the bleeding and would you treat it?

It's tough. I would consider hiring an geriatric care manager or social worker for when you cannot be there or just to help manage things so you can just be with her. Just avoid the ones who push aging in place or someone who believes more in quantity of life than quality. You need someone who can help you find the best residential care situation and who will know what to advocate for in the hospital and in the residential setting. This is all if you can afford it and would like to do less of her care management and more of just hanging out with her.

Anonymous wrote:Hi op, I agree with others - You can ask to speak with a palliative care Dr. They can help you think through the options in focusing on comfort vs intervention. Hospice may be a part of that but even if she doesn’t meet criteria she definitely would for just general palliative services. A palliative physician is specifically trained in this approach to care (focus on quality of life vs length, how to keep people comfortable etc) and may be a really good source of consultation.

It is so hard, I’m sorry.

Also there are small decisions we make that we may not realize are prolonging life, as simple as treating infections with antibiotics. Treating the cirrhosis. Etc. It is reasonable to consider all small decisions and whether they may prolong life and whether that is what she would want. It is incredibly difficult and not simple, but there are so many things that people used to succumb too so that suffering was shorter that we now treat so quickly without thought with antibiotics

Hi op, I agree with others - You can ask to speak with a palliative care Dr. They can help you think through the options in focusing on comfort vs intervention. Hospice may be a part of that but even if she doesn’t meet criteria she definitely would for just general palliative services. A palliative physician is specifically trained in this approach to care (focus on quality of life vs length, how to keep people comfortable etc) and may be a really good source of consultation.

It is so hard, I’m sorry.

Anonymous wrote:OP, you are thinking and doing your very best and are to be commended.

Your mom is proud of you. She knows this isn't easy and she admires your strength, even if she can't articulate it. Continue to be her voice.

There will come a day when you have to utter the most difficult "no" in your life - when the medical industrial machine professionals may want to push a plan/treatment/intervention which will do nothing to comfort your mom's life nor will prolong it.

It is very difficult to say, "No. That is not what she would want and on her behalf, I am saying no." Then be at peace with your decision.

My brother and I had to do this for our mom, and that moment, and saying that "no" will be in my memory forever. But I am at peace because I know that when my mom was healthy and vibrant, she always told us that she never wanted to live in such a condition.

This is really good advice. Also, and I’m not trying to be cruel or pessimistic, but I doubt she has very long.

And, to follow up on 12:37, I was thankful my parents had let me know beforehand they wanted no heroic measures or invasive treatments when it became apparent they were not going to recover. Thankfully they already had DNR paperwork and a living will, as well as a health care Power of Attorney.

Anonymous wrote:OP a term you may find helpful is “palliative care.”

It doesn’t have a universal definition but the medical professionals will understand that your priority is her comfort and quality of life and not doing painful interventions in the interest of longer life.

“Hospice” tends to be associated with a specific timeline and you don’t want to feel like you’re pushing death so if you’re having trouble communicating with the hospital, try “palliative.”

This is good advice OP. If your mom is already not in assisted living or nursing care, you really need to think about having her transferred to the best place you can find straight from the hospital. It sounds like she needs nursing care, rather than assisted living at this point.

There is no way you can take care of her in her home or in your home, unless there is a hospital bed and 24/7 nursing support. I've done the math during my parents demise, and it was much more expensive to keep even one of them at home. I've seen it done, but only when one person who is unemployed lives with them and manages everything, or siblings cycle in and out and hire 24 / 7 nursing care.

You will also ruin your health OP, if you have to do all it. Ask the charge nurse if you can hire a CNA to sit your mother in the hospital to help with her needs so you can get a break. That's what I had to do with my Dad. Sending a hug OP.

I 100% agree with palliative care. That is the best option. Hospice in assisted living/memory care is not good. I think the patient falls into a gap of responsibility. I send you a small prayer and wish for peace for you. It’s so hard. And you are doing it so well. With grace indeed.

And we did not say no when my mom was 89. She lived for five more years, and had a horrible quality of life. Her happy productive years all but faded from our memories.

OP, you are thinking and doing your very best and are to be commended.

Your mom is proud of you. She knows this isn't easy and she admires your strength, even if she can't articulate it. Continue to be her voice.

There will come a day when you have to utter the most difficult "no" in your life - when the medical industrial machine professionals may want to push a plan/treatment/intervention which will do nothing to comfort your mom's life nor will prolong it.

It is very difficult to say, "No. That is not what she would want and on her behalf, I am saying no." Then be at peace with your decision.

My brother and I had to do this for our mom, and that moment, and saying that "no" will be in my memory forever. But I am at peace because I know that when my mom was healthy and vibrant, she always told us that she never wanted to live in such a condition.

Anonymous wrote:

Anonymous wrote:Read the book Being Mortal. It might help with decisions. There is no right it wrong path.

What are you saying? Put her down? It sounds like she's still going (pretty) strong.

“Put her down”???She is not a dog.

Reading a thoughtful book about being intentional regarding the ending we will all face is a wise suggestion.