OP, I feel like I'm several steps behind you but somewhere on the same road. It's distressful even though my mom is between crises for now.

As pp said, you are doing really hard things well. It's not going to be perfect, there are no perfect answers in this case.

Ditto the suggestions for palliative care.

May I just compliment your grace and selfless love.

It sounds awful and distressing…but your mom is very lucky to have someone like you trying to help her navigate this challenging end to her story.

🤗

I think your answer might be palliative care. They will be honest with you and help you make her as comfortable as possible. Quality of life is so important, but it isn't the priority in western medicine.

OP, do you have power of attorney? Has your mom articulated her end of life preferences? I would get all that done stat. Try to find a palliative care specialist - they can help you and your mom think about her medical care from a balanced perspective (how to ensure she's comfortable.) Depending on the outcome of her GI issues, she may not be eligible for hospice - you need to have a diagnosis of less than 6 months to live and they have specific criteria that can make it hard to qualify if the primary diagnosis is dementia. Hospice won't be a substitute for a nursing home, fwiw, but it can supplement and enhance her time in a SNF.

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.”

Anonymous wrote:With regard to the cirrhosis of the liver, it is not only a disease of heavy drinkers so the presence of the disease doesn’t mean your mom has had a secret drinking problem she kept hidden from you. Here’s an article about the rise of NAFLD and associated cirrhosis in people with metabolic disorder - which doesn’t have to mean obesity because there is a substantial percentage of folks with NAFLD who aren’t obese but whose metabolic disorder categorizes them as skinny fat - fat inside because of how the metabolic system is operating even in the absence of excess weight. https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567#:~:text=Some%20people%20with%20NAFLD%20can,cirrhosis%2C%20and%20even%20liver%20cancer.

Just sharing to provide some perspective on the liver disease. I’ve been working with families in your situation for the last 8 years as a caregiver and so just want to express my sympathy for what you are going through now and in the near future.

Thank you for this! We loop back with GI on Tuesday due to the holiday.

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.

No, that isn’t what PP is suggesting. Being Mortal is an exploration and meditation on end of life care, and why it is so interventionist and frankly traumatic. It isn’t because it makes anyone’s life better.

You can decide to step off the automatic intervention train and consider each in the lights another P suggested. What is the goal here?

In my dad’s last years he decided to forgo cancer treatment, dental care, and myriad other heath concerns because they didn’t bring him more quality of life. Dying wasn’t the enemy, loneliness and pain were the enemy. That’s what Being Mortal is about. Do read it - it’s fantastic.

With regard to the cirrhosis of the liver, it is not only a disease of heavy drinkers so the presence of the disease doesn’t mean your mom has had a secret drinking problem she kept hidden from you. Here’s an article about the rise of NAFLD and associated cirrhosis in people with metabolic disorder - which doesn’t have to mean obesity because there is a substantial percentage of folks with NAFLD who aren’t obese but whose metabolic disorder categorizes them as skinny fat - fat inside because of how the metabolic system is operating even in the absence of excess weight. https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567#:~:text=Some%20people%20with%20NAFLD%20can,cirrhosis%2C%20and%20even%20liver%20cancer.

Just sharing to provide some perspective on the liver disease. I’ve been working with families in your situation for the last 8 years as a caregiver and so just want to express my sympathy for what you are going through now and in the near future.

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.

Anonymous wrote:

Anonymous wrote:Where does she live? She needs to be in a memory care/nursing home situation. This is beyond your ability. I posted this in your other thread.

Also if you have kids, do you want this life for them? I don't think your mom would want this for you.

She’s in assisted living but I’ve been touring memory care places (and her current assisted living has a memory care floor). Now I think I may need to add nursing home to my agenda.

This is definitely not the life she wants and I don’t want it for her, that’s why it’s so hard. She definitely doesn’t want this life for me and has verbalized such when she’s able, but there really is no other choice for her. As for myself she doesn’t have anyone else so either I advocate for her or she’s out there on her own. I feel like the last 1.5 years has been crisis, followed by management of the crisis, rinse and repeat.

One of my close friends pointed out that every time I see her is going to be the best she is, as the next time she’s going to be a little worse. I know she can’t decline like this forever, now her body is starting to give out in addition to her brain.

I have no intention of trying to prolong her life, I just want her to be comfortable and as happy as she is capable of at this point. I’m even thinking that with all of her ailments hospice may be an option, if nothing else for the support they offer.

I need to write a “what to expect when you have an elderly dementia relative” book. I have read Being Mortal and it’s a great book.

Do you have a family? I dealt with this with my mom and it was long and painful to watch. Good luck. This is a difficult time in our lives.

Anonymous wrote:Where does she live? She needs to be in a memory care/nursing home situation. This is beyond your ability. I posted this in your other thread.

Also if you have kids, do you want this life for them? I don't think your mom would want this for you.

She’s in assisted living but I’ve been touring memory care places (and her current assisted living has a memory care floor). Now I think I may need to add nursing home to my agenda.

This is definitely not the life she wants and I don’t want it for her, that’s why it’s so hard. She definitely doesn’t want this life for me and has verbalized such when she’s able, but there really is no other choice for her. As for myself she doesn’t have anyone else so either I advocate for her or she’s out there on her own. I feel like the last 1.5 years has been crisis, followed by management of the crisis, rinse and repeat.

One of my close friends pointed out that every time I see her is going to be the best she is, as the next time she’s going to be a little worse. I know she can’t decline like this forever, now her body is starting to give out in addition to her brain.

I have no intention of trying to prolong her life, I just want her to be comfortable and as happy as she is capable of at this point. I’m even thinking that with all of her ailments hospice may be an option, if nothing else for the support they offer.

I need to write a “what to expect when you have an elderly dementia relative” book. I have read Being Mortal and it’s a great book.

As far as treatments and decisions, with every step, ask yourself, "what's the goal?"

The answer might be, "to keep her alive at all costs."

The answer might be, "to make her comfortable."

The answer might be, "to help her have the best quality of life as possible with her current situation."

Or the answer might be something else. Only you and mom can make that decision (with the help of siblings if you have them).

I wish you luck with next steps/decisions.

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

Where does she live? She needs to be in a memory care/nursing home situation. This is beyond your ability. I posted this in your other thread.

Also if you have kids, do you want this life for them? I don't think your mom would want this for you.

I’m a frequent poster here because my mom is pretty much a mess. I’m the one whose mom had knee surgery last year and got hospital delirium, and I’m the one who just back-burnered her career.

Friday my mom fell. Ambulance trip to the hospital and she sustained two hairline pelvic fractures (the best kind according to the ortho- they are painful but don’t require surgery and should heal on their own, a total and complete blessing).

Before the ambulance arrived my mom had an accident and her stool was black (sorry for the TMI). I mentioned this offhandedly at the hospital and apparently black stool is an indicator of the presence of blood. They did an exam and found the presence of blood in her stool.

They scanned her to see if there was an active bleed and there wasn’t, another blessing. However the scan showed cirrhosis of the liver. She’s never been a big drinker so this is a shock. Due to the holidays they can’t do an endoscopy until Tuesday which is a blessing and a curse. Keeping her in the hospital until then has its advantages and disadvantages. She can’t call for help is the most concerning, she doesn’t understand the assistance button. I’m exhausted and I just feel so incredibly bad for my mom, she’s been through so much.

So for those keeping track here are her current ailments- vascular dementia (stage 5/6), primary progressive aphasia (impacts her speech and communication), two pelvic fractures, internal bleeding at some point, cirrhosis of the liver, a slipped disk in her back and degenerative hip and spine issues, afib, chronic venous insufficiency (blood pools in her lower legs), and rotator cuff and knee surgeries that really never healed properly. The hits just keep coming.

I just wonder how much is too much. I guess there’s always worse but this poor woman. I don’t even know what to prioritize anymore, I guess the internal bleeding? She was supposed to start PT and OT for the slipped disk on Friday but now that’s the least of her issues.

Just back here to vent. And if anyone has any experience with any of the above ailments and could offer advice that would be helpful too.