Is there anything at all we can do?
Some of you may have already seen my previous question, but a bit of back story for those who haven't. My mother is 67 and has been on what I feel is a mental health related decline since 2020. She's become a fall risk and simply refuses to care for herself.
In the most recent update I recived from my younger sister, after being hospitalized for a septic wound mom was transferred to a care facility, but most likely will be discharged back to her home as has been the cycle.
My sister had been with mom for almost three weeks before she reached burnout and decided to come home. She informed me that she was doing everything for our mother down to literally having to feed her and as my sister was leaving mom told her, "You're just leaving me here to die."
We can't keep going on like this. Is there anything at all we can legally do? She needs to be in assisted living.
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You aren't doing this to be mean; you are stepping back so that mom can get the care she needs. If the folks at rehab threaten "the state will take over her care " you say YES, please and let them do it.
Is your sister on board with backing off? I hope so. If she takes on the responsibility of caring for your mother again, she will only be prolonging the agony for all of you. That was too much work for your sister.
What about your grandmother? Get everyone on the same page so you will have a united front. Be prepared and remain strong.
If she can't feed herself, she is beyond getting good care in an assisted living facility.
As Barb said, tell the social worker at the facility that she will be alone if they send her home and you believe it is an unsafe discharge.
They can help you navigate the next steps and give you resources to help.
Heads up, discharge happens quickly, so start now for resources. Unless you turn her over to the state.
Best of luck, this is so hard.
Thanks for your response. Caregiving can become so difficult.
In your case, things may have to get worse before they get better.
In order to keep your sanity, you may have to allow them to fail and hope that they learn from their mistakes.
I hope one day they will accept the reality of your mom’s situation and accept help from a professional staff at a facility.
You are the only person in your family who is thinking clearly.
Most of us feel like we have been involved in a bad ‘victim of the week’ movie, a soap opera or that we could perform a stand up comedy show!
I know that I have enough material for a stand up comedy show. I must confess that has been one of my secret desires! 😁
If Mom *could* get home after her latest rehab stay.. & *would* accept homes services to be set up.. then do you & your siblings/sister agree this is what *should* happen? As another trial?
Or are you done with that now?
Just DONE with the pretence of Mom being independent?
If you ARE done - then it falls to siblings/sibling. (Did I remember there is more than one?)
Sister either tries *home* again or is also done.
But Sister has to understand if she volunteers to be the discharge plan support again, this is HER decision. It's only fair she knows in advance exactly what others will/won't do so she knows what to expect.
"I don't agree with that. So I won't be helping with that".
This has become my line. My DH has used it himself too.
Mom's medical team will be measuring her progress towards discharge goals. This will include physio assessments & maybe even cognitive too. Seek out these updates. Keep her team updated with what the family can/can't do.
If you posted here before and I saw it I know I will have recommended the book Never Simple, a memoir by Liz Scheier. It is about her journey trying to provide for her mentally ill Mom along with the entire state and city of New York, all to no avail. If I recall her Mom died very elderly and homeless in her 80s. You can refresh my memory if you get the book.
Not everything can be fixed. This certainly can't be. Your sister recognizes that and she has left. I hope you don't have to learn the lesson her hard way. When the Social Workers begin to call tell them that your family cannot deal with Mom. Don't listen to her platitudes of they will help and you will make it work; they won't and you can't. Tell them that you suggest state guardianship if your Mom is incompetent in her own care, but that you are not mentally or physically well enough (lie if you have to) to deal with any of this.
My heart goes out to you and I am so sorry.
Your ask rehab to evaluate her for 24/7 care. Tell them what sister had to do. Tell them returning her home is "unsafe" because there is no one to care for her especially for what she expects out of these people. Hopefully, they will find she cannot be on her own. No way do you, sisters or grandmom pick her up. Whoever does is now responsible for her. That goes for grandmom too. Maybe if she has to do even one day of caring. She will see what u put up with.
If Mom has money, it will be private pay until her money runs out. Then Medicaid. Medicaid if she has no money. Don't let the SW say there is help out there because once you walk through those doors with Mom you are again on your own. She needs help that you can't give her. Your not trained in mental illness or able to prescribe her meds. Once she is admitted to the NH, you tell her to return home, she must do the work. She must get back to caring for herself because her daughters cannot do it for her. SHE has to make the decision she is going to get better. Once she is admitted, you need to ask for a Psychic eval. With the right meds and the right care, she may improve.
And Grandma. She needs to understand that her daughter has a mental illness that you all waiting on her is not going to change only worsen. Mom has to do this herself no one can do it for her.
It reminds me of my friends sister who was diagnosed with “learned helplessness”. she would sit all day and do nothing. She was losing her home and my friend paid her mortgage in exchange for specific activities that her sister had to do. These activities included therapy, dr visits and walking. It was very hard, took over 4 years, but she seems to be much better and is 100% caring for herself now.
Jis your mom needs to see a psychiatrist and the family needs to quit enabling her. She has fallen into a black hole and is threatening to take all of you with her. Please insist that she see someone before being released from the rehab.
Wishing you luck in getting your sisters and GM to support her getting better instead of going along with her desire to give up.
No word from any of them in 4 weeks until today. My older sister texted asking if I can stay tomorrow and Monday. I know I have to put my foot down and say no, but I also know the fight it is going to start when I do.
(Thank Barb on this forum for this gem)
Give no reason.
Giving a reason is like dangling a chicken in front of a crocodile. Your reason will be ripped apart & destroyed.
A lot of things come to mind that I could suggest. I know you have struggled with this decision and it has been hard. Many worthwhile things are hard.
First of all, is it even possible for you to go? If not, just say no and let it go. Don’t argue or engage. If they need help, they had best spend their time looking for it.
Second, whomever is in charge should have a back up plan for a bed bound elder and it shouldn’t be you. Just saying. I held off a remediation crew from a flooded house until I could get my bed bound elder to safety. It wasn’t easy but I wasn’t taking advice from my grandma or the patient.
Third. Bargain. If you go and that’s a big if, have a list of what YOU want done. They are doing what they want. How about what you want? If that appeals, the forum will be happy to make suggestions.
Good to hear from you.
How did the two days go?
Was thinking of you.
Mom however did 1000 times better than she has since all this started. She was able to walk up her porch steps and get into her chair by herself (their was an aid very close just in case) she got up and walked around (with her walker) and did her leg exercise as well as used the things they gave her to build hand strength. The only issue we had was she did come home with a wound vac. They should have changed everything before she left their care, but they didn't so her pants kept getting stuck in the bandage and though I did my best to retape if by this morning I was very worried the tube for the vac was going to come out which also caused mom some anxiety. My sister did talk to home health care and insisted they come out today so I am hoping they did. I know my sister spent the day with her and that she is also going to be there daily from here out until mom can better do things on her own.
Shes actually trying this time and has been able to do a lot more then I expected. I'm very proud of her progress, but its still a process at times of getting her out of her own head, but we keep giving her reassurance which seems to help.
I know she isn't going to get better over night, but these are big improvements and that is a start.
I started to warn you that HH might not be there right away. They don’t get the order until the patient leaves and then they have to get her worked in. But usually the wound care requirement gets them there quicker. Hopefully it went well today. I agree your mom sounds much more engaged in her care and your sister sounds more realistic. I was glad to hear there is now an aide to help. I hope you feel better soon.
Im sure it will go over like a lead balloon but it sounds like this is the logical progression. Very sad because she’s only 67 (my age).
Good luck to you and your family.
People say things like "I don't want to lose my independance".
Yet it's not moving from one place to another that strips the independence.. Independence is a constantly changing thing throughout our lives. For most it grows as we grow & become adults, then shrinks again as we age.
There comes a time that even if you live alone, depending heavily on family is not really 'living independently' anymore. It's 'living alone, dependently'. For some it can be a big relief to move into a 'village'. To let go of home & yard maintenance, let go of cleaning, shopping, cooking. Move away from all the things they were struggling with & focus on what they CAN do, activities they CAN do. Things like Friday night happy hour 😁
And then, you might think that it's only sometimes that mom literally needs to be fed, but she might refuse to feed herself because of mental issues, and then she's not eating properly. It's a day-by-day assessment that needs to be made.
So sorry for your situation.
An AL is not losing your independence it just giving her the more care she now needs. In Moms AL, there were a few people with cars. Those without Dementia (Moms was mixed) were allowed to come and go as they pleased. They had a front porch and a back garden. Mom had more independence at the AL then my house. She had her room. The facility was square so the inside hall went around ending up at the Common area. There are chairs and couches in the hall and a little library. Mom had Dementia so could not come and go but the garden was enclosed and had chairs out there to sit so she could get Sun.
This may be the last one for a bit other than to update on how she is doing. Mom has finally agreed to assisted living. After my initial two days with her, the Tuesday I came home mom fell again, this time in front of my older sister. She was wanting to know how much she weighed (under 200 which she says she hasn't been since she got married) and got excited at her weight loss and let go of sister and fell backwards. Mom is OK but understandably my sister was freaked out and started pushing the AL issues even harder and asked if I could come back for a day while she looked into options and getting her in. Despite the fact that I hurt my knee and back a day became two as insisted she was doing better and just "need someone to be there till" thats when my daughter tapped in, she was going to try to stay the week, but mom burned her out quickly. Just like before if the person (my sister, me) who would at least make her try wasn't there she didn't try or do anything at all. The forth day my daughter called me in tears saying she couldn't do it anymore, it was to a point mom wasn't letting her sleep because she kept waking her up to do evey little thing. She came home and later that day mom called and said that the following day someone would be coming to the house to discuss options for AL.
My sister has been texting and said mom is currently at the hospital. No emergency, but from what she said they can help get mom into AL faster than if we try to do it ourselves.
I'll update again when I have more information.
Thank you all for your advice and support through this. I appreciate you all more than you know.
You have really done a great service to your family by establishing and holding boundaries.
I know how hard that was. But for others reading your post and maybe needing to do the same, it is such a relief once you manage to get them where they need to be. Big hugs to you Jis. Best of luck finding a good place that can meet her needs.