Long post, would appreciate any help/comments. This forum helps me so much in regards to my father's care.
My mother is in rehab. She fully expects and wants to go home now. Currently she is bed bound. Can get up on side of bed, feed herself, but she is unable to toilet. She can not walk and will not work much with PT to get into a wheelchair. She is afraid they will hurt her or she will fall. Also embarrassed about incontinence issues.
I can't reason with her as it devolves into a argument and she brings up the past. I have lived with her for awhile. She was fully independent in the house to a point. I helped with some things. She does not have any trouble with her memory.
I don't know really what to do. She says she is old and wants to go home. If she can't take care of herself she will go to assisted living. Well, they won't have her if she can't transfer.
I fully know she will not go to AL. I'm honestly worried about her coming back home. We're both still recovering from my father who passed away earlier in the year. She doesn't seem to notice how tired I am but others see it. Has told me I could continue working... how if I have to take care of her. She is verbally abusive to me even more so since my father died.
From what I've read there is really nothing I can do to keep her from going home since she does have capacity. I've told her I would leave the house but I do not think she believes me. Of course I would not let her go without food or medicine. I just can't do the physical part but afraid I will be forced into it.
What does a person do in a position like this? Just let it play out. My guilt, I'm afraid, will get the better of me and I'll just end up trying to take care of her.
The facts are: your mother is verbally abusive to you, which means she doesn't appreciate you.. She has told you to go back to work. You have told her you will leave the house. So, follow through. Remove yourself from her abuse. If the house is hers, she is entitled to work within the system to aim to get back to it. That does NOT mean you have to enable her in what is clearly a foolish thing to do.
It will actually be healthier for her if you are no longer living in her house, because she will not be able to tell the rehab staff that you will take care of her, and they will have to come up with a SAFE solution for her. And you will be healthier because you won't be doing the physical work, nor listening to her abuse.
You said you are "afraid I will be forced into it." You are an adult and no one can force you into anything. Just say no. Regarding the house, it will probably need to be sold anyhow to pay for your mother's care, if not soon then eventually, so you'd have to look for your own place anyhow. Do that now, and spend your time in the peaceful environment you deserve.
It is time for honesty. FROM you TO her, and with the good support of the rehab team of social workers and discharge planners.
It is time to prepare to LEAVE YOUR PARENT'S home if you are expected to be now the full time, full care 24/7 caregivers for someone who clearly needs to have several shifts of workers with several workers on each shift.
THIS IS NOT SUSTAINABLE.
DO NOT ATTEMPT it.
If she DOES return home, and it isn't working, call first APS and secondly an ambulance to return mom to hospitalization and placement.
It is time to tell truth and take action.
Honestly, your mother being in rehab is the best situation that can happen if you cannot hire caregivers for her and her demands and care are beyond your capability. You do not want to be coerced into providing 100% care.
Are you POA? If not think if your really want to be (by your post it will be very hard to be the POA for her). Do discuss with your mother that you can hire an attorney (at her expense) to assist her with options available. If she is competent, she is responsible for setting up a medical meeting with the rehab staff to discuss discharge goals and she will be responsible for all her discharge plans if she is to leave. You should not indulge her wishes as they will become a burden to you.
Are you financially able to move into your own apartment? If so, move soon to distance yourself from the inflated amount of work your mother expects from you.
You will need to think about yourself first and foremost. Seek a therapist to help you gain tools to say no, set boundaries and follow through with your decisions. You can not change the actions of others, but you can change your actions and reactions to them. Good luck.
They may try to guilt or talk you into it. Stay firm. Use the phrase “unsafe discharge”. As in she would not be safe at all in your home. Say NO until you’re blue in the face. It is non-negotiable.
I do somewhat disagree with your idea that you would, of course, not let her go without food or medicine.
You can order groceries and have them delivered. Same with her medication.
But, I hope you are not thinking of going over there daily to make food for her and make sure she eats and takes the proper medication. You are still propping her up, and while you are there, she will get you to do all sorts of other tasks, which you were not prepared to do. You will be right back in the same exhausting cycle of meeting someone else's demands, in addition to traveling between her home and yours!
I say leave her to try and live independently on her own. That is the only way she will see that she can not do it. And you have to stick to your boundaries. You simply are not able to continue taking care of all of her needs so she can live in her home. And you're right, she will not be a suitable candidate for assisted living either.
You can tour some nice full-care facilities now, and choose one that looks very swank, then take your mother for a tour of this nice "assisted living". You can call it that if it will ease her apprehension. Of course she will need skilled nursing. But, there are some very nice skilled nursing homes, with private rooms. I have toured some. I wouldn't mind being there at all!
Please, Do Not give in to your "guilt"! It is not guilt you feel. You feel helpless and scared. You have no reason to feel guilty about something you can not do.
Your mother may think you can, because she is not seeing clearly what a burden it is for you. And that would help her out a lot if she could maintain her image of her former independence, with you doing all the hard work to help her maintain it!
I love my mother and I help her a lot, but there is no way I would consider caring for her myself if she were incontinent and unable to get from the bed to a wheelchair or clean herself. Nope. Not happening, even for a single day! And I really do NOT want my adult child to ever consider doing it for me either.
Is there someone at the rehab place who can help explain what her choices are? Only people who can do the basic ADLs can consider discharge to a home.
I am sending you strength. It’s going to be hard either way. But one way, you can save yourself.
Both her doctor, and yours, are very aware of these situations, and have advice that can be very important for you and your mother.
However… how you express this here does not help anyone here who is going through this with a loved one. I don’t think you are understanding why your replies upset and harm others.
Saying “I took care of her and it worked out for us” is one thing. That’s fine and it may offer hope.
Saying how awful it was, how she was “among strangers”, is implying that rehab or a NH is throwing a loved one to the wolves to die. Very few people now can just stop their jobs and lives solely to 24/7 care for a loved one. If you think everyone who does this is uncaring and cruel… you’re wrong. Shaming others hurts families that are already in a heartbreaking place.
I have had an older close relative who has been in and out of rehab in the last four years. I have witnessed the incredible physical recovery multiple times all because of the willingness to recover and the skill and the commitment of the PTs and OTs. The therapists can assure your mother that she will not fall. They would never allow it. The PT and OT will work with your mother's goal of going home, if that's what she wants. That's where having a conversation comes into play. They will need to convince your mother to do the physical therapy that may give her more independence.
It would be good for your mother to know that the PTs and OTs have seen it all. Incontinence is something they deal with all the time.
I feel for you. You are caught between a rock and a very hard place. It is expensive to bring a caretaker in the home 24 7. That seems to be an option. Your Mom has lived her life, you on the other hand, are trying to live a complex life. You must think of your own well being. I did not and am stuck with taking care of 90 yr old dementia parent, who treats me as if I'm a servant, stupid and incapable. I wish I had support, but in reality I don't ,not unless I pay . I retired and now trying figure things out. Don't make the mistake of feeling guilty for not being available 24 7 to her wants and needs. If she refuses help then the nursing home is best. Sell everything and pray for her, life is to short to wait and see if she going to change she won't. Sometimes we have to make hard decisions in life in order to actually live a fruitful life. Be smart and think with your head not your heart on this one. You've done more than most adult children. I have 7 siblings and only 2 help on occasion. I would really consider selling everything and either pay for 24 7 caretaker or nursing home. You can't do it alone. You won't survive it. If shes bed ridden that's your cue, there's no point in thinking she can be independent in her home, she cannot. Take care of yourself and help her by getting things done before it's too late.
1. The doctor and PT tell her that in order to go home she MUST at least be able to transfer.
2. If she is able to do that in order to come home she MUST agree to caregivers that will come in and help her do what she can not or will not do.
Since you say she is cognizant she should be able to understand these boundaries.
Would these two things be acceptable to you in order for her to return home? Would that take enough of the burden from you in order to relieve some of your burnout? If not then you tell the Rehab social worker or discharge planner that you can not safely care for her at home.
When she gets her strength back, you can revisit this topic.