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My mom is 66, has been underweight for many years due to undiagnosed anxiety/depression/other mental health conditions. She was paranoid of doctors/dentists so rarely went to them, she was also a reclusive person without friends generally and while we have a friendly relationship, I've grieved over her so much already over the years. She smoked in her home, became widowed last year, and now had a stroke resulting in left side paralysis, incontinence, etc. She's too weak to even hold her self up in the bed and has cervical dystonia. I'm honestly shocked she's still alive, as I was the one who called the police for a wellness check and she likely laid in that bed several days after the stroke.
She was in the regular hospital for two weeks, now one week into acute rehab (IRF) stay and they'd like to transfer her in ten days. She's 5'3 and weighs 81 lbs. She doesn't want a feeding tube, which I understand, but has to be spoon fed/encouraged to eat and drink ensure. She's getting her meds via crushed pills and shots at this point and doing some therapy at the rehab. She unfortunately has a Humana Medicare Advantage plan, so we're not sure yet if they are going to cover anything for skilled nursing (but we've started the referral process with case mgr). My husband and I are her only family support and she has limited financial means, which is a whole other thing but we're working to figure out that portion. The hospital doctor definitely mentioned hospice to me, but not in a lot of detail, and I haven't yet talked to either rehab doctor about her condition. I'm just visiting her daily to encourage her/see how things seem to be, but she didn't have much will to live before this stroke, so it's hard to know what to do next. I'm sorting through her medical record from the hospital discharge but know the main things they are treating is HBP and depression. She's taking a variety of vitamins, tylenol for pain and lidocaine patches. She's responsive, can talk and write her name, and is cognitively in the middle somewhere I guess.



I don't really have a specific question, but I'm 41 and a SAHM of a 5 & 7 year old, so none of my friends have been in this kind of situation before. I've been through some of this process with my grandmother (mom's mom, who I'm also POA for) who is 88 and moved to AL last year, but was willing and just needed the extra attention in case of falls (and being appropriately old). It's a complicated life, thanks for listening. :)

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A hospice consult will give you your information. After rehab it looks like she will need skilled nursing. She will never go home. Work with the rehab social worker for information on taking the reins of her assets. If no documentation, you can see a lawyer about guardianship, again costly, or let the state probate appoint someone. Wait for the sticker shock. I recommend you immerse yourself about Medicaid. Search your library or bookstore for a long name title. How to protect your family's assets... by the author Gabriel Heiser.
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Medicaid covers LTC if your Mom qualifies financially. If you sell her house it will take some time to spend down her assets in order to meet the financial criteria but if she’s in LTC long enough she will need Medicaid. You discuss this with a Medicaid Planner for her home state, an elder law or estate attorney or a social worker for her county.
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TiredofAdulting Apr 16, 2024
Yes Medicaid will be the way to go after her funds run out. I’m honestly not that caught up in worry over the financial part, it will work itself out. It’s hard to watch her struggling though. Also it’s been weird to go from seeing her twice a year to twice a week. And I’m a little worried about myself when I get older, but hope I will make better choices and keep up with my health, trying to be my best is all I can do at this point.
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I am sorry that you are experiencing this and sorry your mom is. 66 is young but it sounds like she has had her demons for years.
Have you talked to your mom about Hospice option?
If so what was her response?
And I suppose I should ask, is she competent to make a decision like that? If so then she should be given the information.
I suppose her participation in rehab or the lack of participation might be your guideline for what she wants.
The Social Worker can help with Medicaid application or you can do that.
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TiredofAdulting Apr 16, 2024
Hey sorry for the confusion, my original post was in December. So as of now she’s somewhat improved and we aren’t discussing hospice. She’s maintaining with the medications they have her on and will be privately paying the nursing home until the funds run out from selling her home. It’s all fine, just a lot to juggle with my Grandma also being in assisted living and maybe needed nursing care as well.
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I don't know if writing here again will show it to any previous posters - but I wanted to add an update. So my mom got admitted to a nursing home shortly after Christmas. Humana approved and paid for almost a month of SNF and then she transitioned to private pay LTC at the same facility. They are covering some restorative therapies and she's made incremental progress. She's now up to 85 lbs, but still struggling mentally and physically. I won't be surprised if she has another stroke, or breaks something by falling now that she's gaining strength. I've been visiting her twice a week and spent the remainder of my winter cleaning her house out and getting it in sellable condition. Cross your fingers for me, we found a buyer and the house sale closes Friday. Meanwhile, my grandmother's mental condition is plummeting and I'm having to take her to various appointments/have assessments done to see if AL is still the right setting for her. Even when loved ones are in managed care settings, it's a lot to coordinate. This was "supposed to be" the year I returned to work since my boys are both in school, but this is kind of my job instead, for the time being. Anyway... I'm here searching the forums for more info on memory care. Thanks to those who hang around and give advice!
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AlvaDeer Apr 16, 2024
Thank you for your update, Tired. I bet you are still exhausted with all this and I am so sorry.
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Hi all! Thanks for your responses so far, I just wanted to add that YES long term care is the idea (but maybe hospice?) and NO I was NOT going to take her home with me. I'm in no way a nursing capable person and my kids barely know her, not trying to implode my own life bc of her poor decisions.
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againx100 Dec 11, 2023
So nice that you responded here! I think LTC and hospice can go together. I would pursue a convo with the doctor that mentioned hospice. Since he brought it up, it's likely to be a viable option. It's heartbreaking that she is so young - sorry for your situation.

Does she have her paperwork in order? Living will? You're already POA so that's good - is it activated?

Best of luck.
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She is an unsafe discharge. Any time they start talking about discharge, use those words.
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Your mother needs placement in a nursing home. This would be far too much for you to handle especially with two young children to care for . You need to start talking to social worker where she is now to start the placement process .
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Wishing you peace during this heartbreaking time.
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Your Mom is going to require long term placement. Know that she can live many years at her weight. It takes very little to keep someone alive. Witness the long life of Joan Didion who weighed about 80 for many years. A recent memoir I read, Gretchen Staebler's Mother Lode showed a mom she moved to care for in her 90s who lived to 102 and was able to get about almost until the end.
So the weight has been ongoing, she is adjusted to it, and it is what it is.

As to current issues, she has had a stroke. She is unlike to need skilled nursing but does need long term care placement, likely in a nursing home. You should, yes, be getting together any legal records for POA, documentation, will, advanced directives and etc. This will involve talking to her and now is the time, with or without the help of Social workers. Ask her wishes. Be direct. Cover all things from tube feedings, to dialysis, to IVs and etc. Ask her what care she will want, what heroic measures. This should be done by you, or the person willing to be her POA or MPOA in your family.

Your mother is not currently in a place to refuse LTC it would seem. She may delay it with rehab facility for some weeks, but cannot, I think, avoid it. She would be unsafe on discharge. See to it you do not accept her in your home unless you do want perhaps 3 decades of caregiving. Once in you will have painted yourself in a corner you will not easily escape. Make it clear this isn't an option.

I am so sorry. The time to talk to social workers at her facility is YESTERDAY so get on this with discharge planners as soon as you can. I am so sorry you are facing this.
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I’m sorry to start a response by saying my mother died after a series of strokes, but I think it’s important here as what we know now that we didn’t understand then is that strokes often bring on depression. As your mother has dealt with depression long term, I’d think it’s likely worsened now. If she hasn’t shown a desire in so long to change her life, it’s probably not going to happen now. How sad for you all. Please hear out the hospice staff, they were a huge help to me when my dad chose to use them. Don’t consider for a moment doing this level of care in your home, it’s far too difficult for one person, even with hospice support, and your children are too young to be subjected to it. Mom can receive the care in a managed care setting. I’m very sorry you’re both in this situation and wish you peace
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Dear Tired, what a difficult situation. My first reaction is that your mother doesn’t really want to live, which is probably why the doctor mentioned hospice. You’ve already “grieved over her” for years, and she has very little in her life to enjoy. I’ll just suggest to you that although it’s hard to accept this for a 66 year old, perhaps you just let this happen. ‘Heroic measures’ are not going to change the way she has been for so many years, and trying to force her to ‘be different’ may be pointless. Try to make her as happy as you can and just wait to see how things pan out. And try to keep yourself as happy as possible, because that will be nice for her as well as for you. Love, Margaret
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Since the doctor mentioned hospice, you should move forward to have a meeting with them. That would give you some clarity and information to help you process the situation.

I wish you luck in this difficult time.
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