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amicable Asked August 2016

Mom in skilled nursing facility won't try, seems to be giving up, what can I do?

My mom is in SNF post pneumonia. She has been declining PT for different reasons, breathlessness sometimes and stomach cramps and diarrhea others. I'm told that they don't do tests or administer extra medicines unless requested, so I've requested a CBC and chest x-ray to see if the pneumonia has cleared up. She asked for something for the bowel problem and someone told her they were going to get her something but it hadn't come in yet. The PT guy told her that if she doesn't participate, she will have to leave the facility. I have no idea what I should do with her if that happens. I've asked for a psychiatrist to come see her for her depression and hopelessness, but they don't have a full-time person on staff. I've also contacted her regular LCSW, but she hasn't contacted me back. If she can't get past the depression, there's not much hope for her to regain any physical strength. She won't qualify for medicaid yet...I tried to tell her about the look back, but it's only been 3 years since her transfer of assets (which was actually money she owed me, but not sure if Medicaid will accept our agreement). If she has to go self-pay for full time care, we'll both be broke in a few months. I feel awful...I've been trying to be encouraging, but I'm losing my patience with her. She has made such a long string of bad choices and didn't take care of herself, and now I feel like I'm stuck. I can't take care of her at home unless she is stronger. I'm wondering if she feels like she has nothing to look forward to and just wants to die, if I should bring up the subject of hospice, or if that would make me a horrible person as if I were telling her that I was giving up on her? It wouldn't be so bad, but I have a disabled son who I'm trying to help gain his independence and my daughter is starting college and working nearly full time. Husband just started a new job and there are so many decisions to be made that it's getting really stressful. It just feels like there's not enough of me to go around.

amicable Sep 2016
Until today, she didn't fully grasp the seriousness of her condition...well intellectually she does, but it hasn't hit her fully emotionally. It is just beginning to sink in...denial is turning to anger and regret...

zythrr Sep 2016
Amicable's mom probably senses her time on Earth is coming to an end and wants to spend what time she has left at home.

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SallyKB Sep 2016
Reading your post is a deja vu of my experience with my mom. I'd often pray that she'd rally "one more time", then I'd grieve when she got even worse, and then....
she'd rally one more time.
I totally understand what you mean about the roller coaster.

amicable Sep 2016
Thanks Sally. I visited my mom today and she looked bright and chipper, joking with the nurses. It's the roller coaster that's the hard part...one day near death, the next very much alive, yet we know how it will end up. I'm just trying to think of the time beyond, and although I'll miss her greatly, part of me looks forward to some freedom from all the responsibility and heartache.

SallyKB Sep 2016
The situation with my mom sounds similar to yours. After a shattered hip due to a fall in her home, brought her into a rehab facility, my mom never took her rehab seriously ("I'll do it tomorrow").
Eventually her rehab stay turned into "long term care" (nursing home) in the same facility. It was very sad to watch her declne.
Somewhere along the way, I saw an elder care attorney. The money and time I spent was well worth it. This attorney explained to me in detail what needed to be done to get my mother "Medicaid Ready." At least I was able to preserve a little bit of her hard earned savings. The last place on earth my mother wanted to live was in a nursing home, and if she knew that's where her money was going she would have been even sadder than she already was. If there was ANY way on earth that she could have moved in with me, my husband, and kids, that's what we would have done. I also worked full time. At that time, however, she wasn't able to walk, had become incontinent shortly after going into the rehab, and was aspirating. (She didn't have any of those problems before the fall.
Amicable, I'm sorry that you're going through this I understand the pain.

amicable Sep 2016
Sigh. Hospitalized again, and this time it's worse. She rallied for a day or two, but three days short of going home, suddenly it's awful. There seems to be a mass in her lung, and her doc says it's time to talk about hospice.

Sunnygirl1 Aug 2016
If she is prescribed meds for depression, will she take them? My mom started on them and they have really made a huge difference. And she's in her 70's. I never thought she would actually consult with a psychiatrist and take meds, but it's happening.

I suppose that I would weigh the need for those funds against how much you can endure at home. If she's not truly ill, she may have years ahead of her. Hopefully, if her mental state improves, it could mean good days a head. I wish you the best!

amicable Aug 2016
Thanks Jeanne...currently trying to make an appointment...the VA system only has availability after 2 months' wait. Hoping for a vet's choice referral. Sheesh...if you're bleeding, you can go to the ER, but no way to get immediate help when you're having an emotional/intellectual crisis. Now I find out she's being discharged today...gearing up for the changes. Hopefully her care team will have some suggestions. I wish we could just delay it through the weekend...at least her "regular" LCSW called yesterday and made a good point. She said I shouldn't have to work harder at fixing her depression than she does!

jeannegibbs Aug 2016
"I think I may need to seek some help myself...hard to be cheerful and encouraging when all I feel now is used and resentful."

Yes! This is very perceptive of you. You deserve this ... not just to be able to encourage your mother, but because you are a fine, caring person who deserves happiness. You are the only you the world has. Take care of you!

amicable Aug 2016
I'm completely sure it's her mental health state. I've requested a social worker and a mental health exam, but they haven't responded yet. I put another request in this evening. She won't lift a finger to help herself get better and gets mad at me when I suggest things. She sleeps and reads all day, keeps making excuses. I am starting to understand why my dad left her and why she never remarried!
This is so draining. I would ask my brother to take over, but he and his wife just spent the last 10 years of their lives caring for her mother, who just passed away a few days ago. Can't do that to him, and he's pretty ill-equipped to handle it anyway. The funeral was today, so didn't want to call him and bother him about all this. And yes, if Medicaid won't accept our agreement, then I'll have to spend the money that should have been ours. Pretty angry about that, given that she has done nothing but take from me and hubs for the last 11 years. I think I may need to seek some help myself...hard to be cheerful and encouraging when all I feel now is used and resentful. Thanks for the hugs...helps so much just to know someone understands!

Sunnygirl1 Aug 2016
That's tough Amicable. No easy answers for you, I'm afraid. I think I might try to find out if her problems are actual medical problems or due to her mental state. Is she really near the end or not? Because, it sounds like she's going to need a lot of around the clock care. How will you do this in your home? At some point, you might have to use that money for her care OR just hang in there. Hugs to you!

amicable Aug 2016
Thanks Sunnygirl. We did see an elder care attorney, but it took her time to finally let me take over her finances. He seemed to think putting the money in my account was a good idea, but we had no written agreement (what it was is my hubs and I paid 2/3 of a mortgage in all our names for her for 7 years so she could live in a house. The house was supposed to be an investment for us instead of putting more in our IRA's, but we actually had to sell it at a loss when she became unable to live independently. All that money is traceable, but without a written loan agreement I'm not sure Medicaid will accept the transfer. I haven't spent a dime of the money, but if she doesn't qualify for 6 months or a year, it will all be gone. She had been paying me monthly to share household expenses, but we didn't have a rental agreement or a caregiver agreement because she kept putting it off and wouldn't sign one. So worried that Medicaid will look upon that as her gifting us the money. When she first came to live with us, her doctor said she only had 2 years left. That was over 4 years ago. The past 4 years have been 5% good and 95% hellish, and has put a strain on our marriage.

pamstegma Aug 2016
Once you refuse PT three times in a row, rehabilitation ends. Then you take her home or you abandon her to become a ward of the state. Often old people give away assets in the understanding you will care for them forever. It's not fair, but it looks like she got you to take the bait. So Sorry.

Sunnygirl1 Aug 2016
Why would her care make you broke?

I'd see an Elder Care attorney who knows Medicaid and get a professional opinion on your questions about Medicaid and her eligibility. The repayment of a legitimate loan should be traceable. Also, find out if she qualifies.

I'd also discuss where she would be transferred to. If you are not able to care for her in your home, they'll need to figure out her next step. You could also explore Hospice. It's sounds like you already have too much caretaking. Taking charge of the situation and/or walking away, depending on your decision is not really a moral issue, imo. You have done all you can do and she's made her decision.

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