End Stage Heart Failure-Hospice?

[Anonymous]

OP bumping with a frustrating update.

Mom released from hospital, back to her independent living apartment and unwell. I stayed overnight first night and quickly realized that she needed constant supervision.

Sibling arranged for 24/7 sitters/companions who help with ADL. Yesterday my mom had a follow up appointment with her regular doctor. My sibling (who has POA) accompanied her and today I was told that next will be a surgical consultation about TAVR.Her doctor said since the patient wants to pursue surgery, great, let the practice know if she gets okayed for surgery and they’d go from there.So no hospice or palliative care mentioned,get an appointment with the specialist and take the same dozen meds.

My mom called me today crying and complaining that she is frustrated that she’s not getting better and feels worse.

There’s no surgery consult appointment yet and no idea when this will happen if at all. So we are waiting I guess. They both are delusional and in denial. I think it’s crazy to even consider a surgery of any type considering she is mostly bedridden and it’s all a pipe dream but no one can or will tell her this. No idea what stage of failure she’s in when I asked sibling said no idea.

I found an old email my mom sent detailing why she wasn’t going to have this heart surgery. I want to read it to my sibling and mom to discuss it but also at this point just let them do their thing.

I’m so tired.

[Anonymous]

So sorry Op

[Anonymous]

I am sorry. OP, it sounds like no matter what happens, your mom is coming towards the end of life. I hope you can find a way to detach from the details (which sound frustrating...it never feels good to watch people flounder on important decisions!!) and connect with her in whatever ways feel right to you. With my grandma in a similar situation, we talked about her best memories, played music and TV shows she liked, ate her favorite foods together, I gave her manicures and put lotion on her hands and combed her hair, and just gave lots of hugs. I don't know if any of that is how you would like to spend time with your mom, but I hope you find some way to just be with her.

[Anonymous]

OP back. Thanks y’all. Digging my heels in and told my sibling today that im not going to be handling the details of getting our mom to the surgeon or making the appointment. Drawing the line here.

Sad backstory is my mom is and always has been a narcissist and a neglectful mom. Expects to be treated like a queen and served. Literally.Nothing holds her interest. No hobbies beyond talking about herself. Doesn’t read, like listening to music, doesn’t watch tv. Control freak. She’s not the sweet little old lady that she looks like.

[Anonymous]

Anonymous wrote:OP, do you have POA? If she is (appears to be) of sound mind you can't sign her up for anything. And hospice won't force itself on her no matter what you say.

If she is going to die and has a terrible quality of life, and if a surgeon will do the surgery, why not let that happen? if she dies due to the procedure she is just dying more quickly, and without all the heinousness of end of life palliative care.

I would take this approach as well.

[Anonymous]

Anonymous wrote:OP back. Thanks y’all. Digging my heels in and told my sibling today that im not going to be handling the details of getting our mom to the surgeon or making the appointment. Drawing the line here.

Sad backstory is my mom is and always has been a narcissist and a neglectful mom. Expects to be treated like a queen and served. Literally.Nothing holds her interest. No hobbies beyond talking about herself. Doesn’t read, like listening to music, doesn’t watch tv. Control freak. She’s not the sweet little old lady that she looks like.

Then back off caring for her, you are well within your right. If she chooses hospice or surgery, that’s still her decision. If you want to wipe your hands of being involved, I don’t blame you a bit.

[Anonymous]

Anonymous wrote:Went through this with my dad. He had valve replacement surgery (open heart, not TAVR) at 87 and lived until a week after his 90th birthday. His CHF was not as advanced as your mother's appears to be.

Even if your mother were approved for surgery, it is not an easy recovery. My dad was in the hospital for 2 weeks after the surgery due to a complication, got hospital psychosis for several weeks, needed rehab in a hospital setting after the surgery, and then had to go to outpatient cardiac rehab for 6 months after coming home. At their age, all the time spent in hospitals just makes them weaker and it can take a while to regain whatever strength they had before surgery. And it's not like he was magically better after the surgery. It may have extended his life for a year or two, but it didn't improve the quality of his life.

Regarding hospice, my dad received hospice services the last two months of his life in his assisted living facility. It was great, actually. When he needed oxygen or other support, it was delivered within several hours. A hospice nurse came to visit twice a week and he enjoyed the visits because she was young, pretty, and very attentive. A doctor checked in regularly. It was free to us because he was on Medicare. I had the ability to call or text his nurse to get any of my questions answered, which was a great comfort to me. When done right, hospice is a good thing.

I’m the person who posted on 21:38 & 21:40 and I just want to add our experience in case someone is reading this later.

My mom was 91yo and went to the ER with chest pain. We were told it was TAVR surgery on two valves or she would not leave the hospital alive. She was in the hospital about 3 weeks because they ended up doing two separate surgeries. She did have hospital psychosis which was really scary but only lasted a few days. She left the hospital and went straight home. We chose not to send her to a rehab place and, because it was during Covid, there was not much pt offered. She ended up recovering fine and it’s been over 2 years.

She was never bedridden before the surgery and she was not overweight. She did not have diabetes or any complicating factor. So that sounds different from the OP’s mother - but I want people who read this in the future to know that it can be an option for a person even though they might be elderly.

[Anonymous]

I'm so sorry OP.

in her last couple of months of life my mother made several decisions to pursue every single possible treatment, including surgeries, to prolong her life and deny what was happening.

It was incredibly hard to watch, help manage, live through, react to (as she was on the rollercoaster of care/crisis/recovery constantly) etc. There were a couple of things that helped me get through it. I had to remind myself regularly that fundamentally she was an adult and I couldn't control her. She was going to make her own choices and I couldn't overrule them. Sometimes I could influence a doctor, or provider, or delay release from a care facility, but that was it. I couldn't control her decision making any more than she could control mine in my adult life.

Secondly, at least I knew I was honoring her wishes. Even if I disagreed with them, thought they were dumb, whatever - when I couldn't change her mind I helped honor her wishes. It didn't change any outcomes but it did give me a framework to find more peace in the moment, and after she was gone.

It sounds like, no matter what happens, this probably won't be a terribly prolonged period of time you're in. My sympathies and best wishes to you.

[Anonymous]

Anonymous wrote:I'm so sorry OP.

in her last couple of months of life my mother made several decisions to pursue every single possible treatment, including surgeries, to prolong her life and deny what was happening.

It was incredibly hard to watch, help manage, live through, react to (as she was on the rollercoaster of care/crisis/recovery constantly) etc. There were a couple of things that helped me get through it. I had to remind myself regularly that fundamentally she was an adult and I couldn't control her. She was going to make her own choices and I couldn't overrule them. Sometimes I could influence a doctor, or provider, or delay release from a care facility, but that was it. I couldn't control her decision making any more than she could control mine in my adult life.

Secondly, at least I knew I was honoring her wishes. Even if I disagreed with them, thought they were dumb, whatever - when I couldn't change her mind I helped honor her wishes. It didn't change any outcomes but it did give me a framework to find more peace in the moment, and after she was gone.

It sounds like, no matter what happens, this probably won't be a terribly prolonged period of time you're in. My sympathies and best wishes to you.

OP and thanks. I needed to read this. Very comforting.

[Anonymous]

So many responses have been so much more heartfelt than what I am about to say, but I think it needs saying. Next in line to decide care and make medical decision will be the spouse. Always. Unless there is a POA that states otherwise.

[Anonymous]

... and I see Sister has it

[Anonymous]

Anonymous wrote:OP back. Thanks y’all. Digging my heels in and told my sibling today that im not going to be handling the details of getting our mom to the surgeon or making the appointment. Drawing the line here.

Sad backstory is my mom is and always has been a narcissist and a neglectful mom. Expects to be treated like a queen and served. Literally.Nothing holds her interest. No hobbies beyond talking about herself. Doesn’t read, like listening to music, doesn’t watch tv. Control freak. She’s not the sweet little old lady that she looks like.

Regardless of how your mom is sister is post and should handle it.

[Anonymous]

OP bumping to say that my mom died today.

Thanks for all of the support. She died almost with me at her side - had asked to get helped back into bed. I went into her room to give a kiss goodnight and dashed to my car to get my luggage back at my car. She passed while I was walking to the parking garage.

[Anonymous]

So sorry for your loss, OP. I hope you find comfort in knowing that you did the best you could for your mom and that you were there for her and with her near the end.

[Anonymous]

Anonymous wrote:OP bumping to say that my mom died today.

Thanks for all of the support. She died almost with me at her side - had asked to get helped back into bed. I went into her room to give a kiss goodnight and dashed to my car to get my luggage back at my car. She passed while I was walking to the parking garage.

I’m so sorry for your loss OP. I’m glad you were with her (a lot of loved ones wait until people have left them alone for a minute). You are a great daughter and she knows how much you loved her.