Anonymous wrote: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.

🤗

Here here. OP-bless you. This is so hard. I went through this with my grandmother after my mother died and she had no one. It was the worst thing I've ever experienced. I agree with everyone who says palliative care is your best option.

I read your posts OP and I don’t have anything to help you but only want to say I wish you the best. Hope your mom gets the care she needs and you know you are a wonderful child. Hugs and my best wishes to your family.

Anonymous wrote:Just a quick update- the GI doc actually suggested that the endoscopy wasn’t a good idea and I wholeheartedly agree. There’s no active bleed and I think if we put her under anesthesia she’d be gone forever. They did give her Haldol last night when she was sundowning which irritates me to no end. They had a sitter with her when I came in this morning. The main doc was super pissed about the Haldol. But that’s what they do with problem patients at night.

We’re hoping to get her to rehab for the knee in the next few days- the Xmas holiday really messed everything up. But she needs to be 24 hours free of a sitter before she can go, or I’ll have to hire one at the rehab which I most likely will have to do.

Not sure the next steps. Return her to assisted living and hire a helper (but I think she’ll run out of money at some point), memory care but I’ll probably still have to hire a helper? God I wish there was a handbook.

OP at this point your mom running out of money could be a blessing esp if she’s a DC resident. DC has a great Medicaid program if your mom has the income to qualify. I would seriously consider meeting with an elder law attorney to discuss medicaid asset protection. Medicaid has a five year look back but if you plan correctly, in 5 years she can have the income to qualify for medicaid. My mother has a 24 hour nurse AND aide and lives in our home via medicaid (she’s a functional quadriplegic because of strokes—long story). I made decisions listening to doctors and effectively prolonged her life when I was clear with Drs that she didn’t want that. Anyway, I trust in God that He’s got his hand in this so it is what it is. Medicaid has enabled my mom to have the absolute best quality of life by living at home with us. It is disruptive, yes, (and we have a basement in law suite) but far better than the drama of her living in a SNF, trust me I know. In my mom’s case she really had no money so that was great.

A friend in Florida and one in VA did the medicaid asset protection route. One is in memory care and the other was in a nursing home before she died. Look into it!

op i am so so so sorry. this is indeed so hard. i am sending you the biggest hug

You are so impressive, OP. I have been there. You are doing a great job! Don’t forget to eat your favorite foods and look at beautiful sights and hug everyone you love. You will make it through.

Hang in there Op it is very hard but you will never regret the care you are giving your mom.
My dad had a stroke, paralysis then other issues that made it very hard.
Take it one day at a time.

Anonymous wrote:I've been saying snf since you posted about back burnering your job. Where do you live? Maybe we can recommend places.

This is OP- We’re in Ashburn. Hoping to move her in the next day or two to skilled nursing, asking if Johnson Center at Falcons Landing or Heritage Hall has space. Heritage Hall is highly recommended for people with her issues but it’s a shared room so that isn’t ideal for her- my grandmother (her MiL) was in a nursing home with a shared room for about 10 years before she passed and it is absolutely my moms worst nightmare.

She was incredibly agitated last night when I had to leave her, I feel so awful for her because I know it’s comforting for her when I'm around, and it’s scary when I'm not. But I can’t be there 24/7. And if I’m honest with myself she will have no recollection of this hospitalization. Although it’s incredibly traumatic for me.

So the current plan is skilled nursing with a sitter/aid/advocate for when I can’t be there. She’s got such a host of issues though that I’m hoping they’ll be able to help her regain enough strength to be able to be mobile again. Unfortunately due to the holidays PT has only been by once since Friday and she was only up once, with the help of two people, for about 10 minutes, then immediately fell asleep from the exertion.

I feel like this road has been so long already but we’re only just beginning (again). I just want to do right by my mom but man this is the hardest season of my life. Thanks for the continued support and just being a place where I can let my feelings out.

OP is your mom getting any music therapy? There is a lot of research now on the power of music in soothing dementia patients. I’ve worked with several dementia patients over the last several years I’ve been working in elder care and it’s remarkable the difference where music is regularly used. One very advanced Alzheimer’s patient who was being cared for at home was managed very well with regular music therapy- his wife had filled an iPod with all his favorite songs from his youth and young adulthood and we played it on a loop in the home during the day with caregivers. He came alive in all the best ways and was soothed more than patients I worked with who didn’t have music on offer.

If you Google music and Alzheimer’s you’ll find tons of information about this therapy. It’s an easy way to help soothe your loved one in this journey - not perfect but better than a lot of other approaches. Music goes somewhere in our brains that is the last to go in the dementia journey. There is a very good documentary about Glenn Campbell’s journey with Alzheimer’s that really illustrates the power of music to ease the path.

I’ve been where you are. It is agonizing. It feels like there are no good options. Constant second guessing. I actually enrolled my loved one in hospice, then disenrolled them to pursue treatment. I was not ready for hospice even thought the evidence was there. Finally enrolled in hospice again when it became clear the hospital/rehab was doing much more harm than good (Haldol, IVs, treatments, strange place, needing 1:1 care because rehab is not a secure place, etc).

Spent time thinking about what the loved one would have wanted and what I would want if in a similar state. I knew they didn’t want IVs, CPR, etc but what about IV antibiotics or more gray treatment areas? I realized there would be no “happy choice” and the best option was a peaceful death with minimal intervention. I found a hospice I loved that really helped me realize I had done all I could.

Loved one was able to pass peacefully at Stage 7 (stopped being able to swallow). It still was awful but the hospice helped ensure that there was no pain or agitation (which had not been the case in the previous months, loved one probably was in constant pain but couldn’t communicate — only the hospice realized it).

You are doing the best you can in an impossible situation. Death can be messy and it sucks.

I've been saying snf since you posted about back burnering your job. Where do you live? Maybe we can recommend places.

Anonymous wrote:I would talk to case management (they’ll probably be in on Tuesday) about a SNF - skilled nursing facility - a nursing home. You won’t need to hire 1:1 help in that environment.

They can start getting insurance approval for that level of care.

This, OP. I think this is where your mother is at. She needs 24 hr care. Even if you did manage to get her back to AL, you'd have to staff 24 hrs and that's nearly impossible to do reliably. I'm sorry, this is hard I know-my parent is essentially on the same track as your mom.

I would talk to case management (they’ll probably be in on Tuesday) about a SNF - skilled nursing facility - a nursing home. You won’t need to hire 1:1 help in that environment.

They can start getting insurance approval for that level of care.

Just a quick update- the GI doc actually suggested that the endoscopy wasn’t a good idea and I wholeheartedly agree. There’s no active bleed and I think if we put her under anesthesia she’d be gone forever. They did give her Haldol last night when she was sundowning which irritates me to no end. They had a sitter with her when I came in this morning. The main doc was super pissed about the Haldol. But that’s what they do with problem patients at night.

We’re hoping to get her to rehab for the knee in the next few days- the Xmas holiday really messed everything up. But she needs to be 24 hours free of a sitter before she can go, or I’ll have to hire one at the rehab which I most likely will have to do.

Not sure the next steps. Return her to assisted living and hire a helper (but I think she’ll run out of money at some point), memory care but I’ll probably still have to hire a helper? God I wish there was a handbook.