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LizzieII

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Friend was DX
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NC
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NC
When I wrote my very first post about my 55 yo friend’s AFO situation a few months ago, in addition to getting information, I received some very nice “gentle reminders” that basically said to butt out—I was reminded that how the situation was handled was up to my friend and her boyfriend. But I am just beside myself about something that is happening and I don’t know where else to turn but here.

The long-time live-in boyfriend (who MAY have her POA, I don’t know but he surely has her “controlled” IMO) now wants my friend to go to a nursing home while he remains in HER house with supposed plans to sell it off to pay for her care sometime this spring/summer (after auctioning off her remaining personal possessions and selling her car.) His supposed reasons for thinking now is the time for a nursing home are: “She needs help walking”, “she’s fallen a lot” (that’s true---I was worried about that when I first posted), “the transport wheelchair we bought hurts her back so we can’t use it” (it was cheap and since it is a transport chair it is not padded and as far as I can tell, it still could work to move her room to room when she can’t walk even if it can’t work for long spells of sitting) “ we can’t keep buying stuff she can only use a few months” (the ALS chapter here has little to loan, unfortunately) “she’d be well-cared for in a nursing home,” “they have ALL the equipment she’d EVER need,” (yeah, right) “we can’t install a lift to manage bathroom stuff because lifts require doorways that are SIX FEET WIDE” (I can’t believe that’s ever true and right now, she CAN walk and I’d argue also, she CAN use the transport chair and can transfer) “ we can’t install a ramp to get her to the driveway because that would hurt the value of the house" (so she’s trapped inside--- thanks to all for the other suggestions on my other post about traveling over grass—I’m sorry I can’t use them but maybe other readers can) and lots of other things I think are totally stupid. The boyfriend is also casting about to get contributions from loved ones to pay the bills for this care (est 8K/mon) before the house and contents are sold. The BF has also mentioned there will be bills at the house for electricity, etc even after my friend goes to the nursing home but he plans to cut the cable to basic cable (what a sacrifice)

For whatever reason (and yeah, I know this is really stupid but I seem can’t do anything about it---I’ve tried) my friend has not been seen by an ALS doctor, seen by anyone on an ALS team, or had contact with anyone from the ALS Clinic for over 7 months. Apparently the boyfriend thinks a note from her GP (which she HAS seen once in the last few months and who knows nothing about ALS as far as I can tell) will get her admitted to the nursing home and maybe it will. The home says it has space and apparently may take her next week.) If I confront the boyfriend too forcefully, I know all contact will be permanently cut off with my friend given his control. I don’t know if my friend is going along with this ridiculous plan to “spare” him (apparently she is going along) but I’m not able to talk to her now about this. Is this as bad as I think it is? Is there anything I can do besides somehow convince my friend this is nuts? I could take her in and my house is pretty accessible but we would need help sometimes. But I do not think she’d come here plus I live about 75 mi from the ALS Clinic and do not live near a major hospital. I do understand nursing homes are sometimes necessary but I do not think it is time for my friend to go to one.
 

SMP51

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Joined
Oct 31, 2011
Messages
675
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CALS
Diagnosis
11/2010
Country
US
State
FL
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Fort Walton Beach
wow.
so who is going to pay for the nursing home until the house sells, this wonderful boyfriend?
could be she would be better off there than with him, and will her family and friends continue to support him with her in a home? that is a whole lot of gullable folks.
sometimes things have a way of working themselves out. be there for her, she is going to need a true friend when she figures out what a scum bag he is.
I bet they both already know how you think/feel. keep doing for her the things you can and what you think she needs(like the walkway).
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
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Lost a loved one
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01/2007
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orlando
Does she have any family--he sounds like he like quite the winner.

What does she say? is she ok to go along with anything he says? In my opinion, while a nursing home is the only option for some people it is nto the best place for anyone unless there is nothing better. good nursing homes are not cheap and the cheap ones do not give good care (in my experience). a good home can wipe you out financially.

in home care is less expensive than a nursing home and I think a better option usually. this sounds like a terrible situation for her, but if she is going along with him then you are limited in what you can do. she may be going along with him because he is all she has and she is scared.

if you are willing to care for her, then offer to her. tell her everything you have said here. what is the worst that will happen? If she throws you out, at least you tried to help her. if you say nothing, you will feel terrible and she will end up destitute and in a nursing home, from what you told us.
 

Diane H

Senior member
Joined
Sep 28, 2013
Messages
637
Reason
PALS
Diagnosis
11/1985
Country
US
State
IN
City
Fort Wayne
Go to
NC DAAS: Adult Protective Services

and follow the links to the county she lives in. There you can report the situation to Adult Protective Services. They will visit and evaluate the situation. If legal action is required they will step in. Otherwise they can help her make decisions. The boy friend may be a sleaze or he may be too stubborn or dumb or just uninformed to help her. If asked to give a short reason for your concerns, I would tell them that he refuses to have a ramp installed. That is a huge safety red flag! That should get them on the case! I don't know if they have to reveal who asked them to investigate, but if you have to ’fess up just tell her that you went to Social Services to see what help with care and finances were available and they just took control.
 

FSHolbrook

Distinguished member
Joined
Oct 14, 2013
Messages
216
Reason
PALS
Diagnosis
09/2013
Country
US
State
ND
City
Fargo
I do not think I could have ever though up a horror story like that. I think that Diane's suggestion this very good. This sounds like a very abusive relationship, my prayers are with you and your friend.

Rick
 

Isaac

New member
Joined
Mar 7, 2014
Messages
6
Reason
Friend was DX
Diagnosis
11/2013
Country
US
State
Michigan
City
Marquette
I really like Dianes suggestion too.
 

LizzieII

New member
Joined
Dec 28, 2013
Messages
7
Reason
Friend was DX
Country
US
State
NC
City
NC
Thanks to everyone. It was helpful to have your support and suggestions. I do think my friend is in an “abusive situation” but at this point, I am reluctant to call DSS. I did appreciate the suggestion though and I hope it will help other readers in the future who read this thread. It’s not that I would mind having to identify myself to DSS (if I did have to) and while it would not be what I would prefer to have happen, I wouldn’t care that much if my friend were to find out I was the one who called. But if an investigation was done NOW, I think my friend would end up in a nursing home anyway. Clearly, she IS in a bad situation and she should NOT be living in her house with the boyfriend. But she is so isolated and brainwashed (by the boyfriend) I think she’d say she wanted to go to a home to “spare” him (while he lives in the house she owns that is pretty nice.) And I have no faith her feelings would change during the course of a brief DSS investigation. I realize nursing homes are sometimes the only option and I don’t mean to suggest no one should ever consider them. But I don’t think my friend will last long (for psychological reasons not just physical) in that sort of situation so I don’t want my actions to make it happen sooner, even by a few weeks.

Some posters asked about her family---my friend does have family members (2 sibs but also a few cousins) who are anxious to help and some who are able and willing to take her in (as I am.) But the boyfriend has convinced my friend most of them do not have her best interests at heart. That is not new, he’s been campaigning against some of her relatives for years (even before she was diagnosed with ALS.) Although communication has not been cut off, I am fast getting on the list of “bad people” because I said I would like her to consider coming live with me. So I'm not sure how much more contact I will have. (it's not just a matter of the boyfriend cutting off communication, my friend is also doing that since I offered. She even said "you seem to think ___ doesn't care about me and if you think that.....)

The nursing home the boyfriend is looking at apparently requires some sort of statement from an MD for admission. (Wow—how amazing) But it sounds like the primary care dr (who has seen my friend maybe once in the last 6 months) is willing to sign off on that and say my friend’s level of disability cannot be managed at home. (She can still walk a bit and has no breathing or swallowing issues yet.) Apparently that dr doesn’t have a problem with the fact that my friend has not been seen by her ALS dr or by anyone else at the ALS Clinic (like OT/PT) in almost 8 months. She also doesn't seem concerned about the lack of adaptive equipment in the home. My friend is also the only ALS patient this primary care dr has ever seen.

This nightmare situation certainly is not the norm. But I’m posting this last post on this thread to say to future readers, if you think something is wrong in a PALS situation, please consider saying or doing something early on. Don’t worry too much about offending anyone. I thought something was wrong several months ago when I first posted on this forum. I said then I thought the boyfriend was “fatalistic” and a negative influence my friend’s health. But I was afraid to “butt in” too much then but I should have. I might have been able to influence my friend’s thinking back then had I been more active but now it’s too late. I am quite sure that most family members, friends, and significant others have their PALS’ best interests at heart. But please remember there ARE exceptions. There is abuse everywhere and the presence of ALS doesn’t protect against it. So if you get a creepy feeling, please trust it.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
I am not sure why DSS is not an option, because she will end up in a home anyway. That may be true, but her home would be put in trust for her care, and not squandered by the boyfriend. She would get the adaptive equipment she needs, and may be able to start living again, even though it is with ALS. Better late than never. I have had to report several cases in my career, and I do not regret one. I would regret if a life was lost that I could have helped though. Just my opinion.
Paulette
 

lgelb

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WA
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Seattle
I agree, the house's ownership is at issue and a host of other issues that a legal advocate could look at. The Court can mandate a guardianship if the situation dictates. She is not at a disease stage that suggests nursing home placement and it is quite a crime to place her before needs dictate, if ever. I would contact an attorney w/ this specialty and at least be advised as to what your and her family members' options for intervention are.
 
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