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ShilohSavin Asked August 2015

My Mother is refusing additional PT Rehab. What do I do?

She wants to be discharged home. My Birth Mother is in a LTAC Hospital unit after an ICU stay. She still cannot get up out of the bed and walk, she is receiving VENT weaning and is on a trach collar. She is BIPOLAR, she has multiple conditions, Coronary Heart Failure, Acute Kidney Injury, Diabetes, Bipolar, Depression. Since she gave me up (age of 12) little to no contact from her, until 2008 when she needed help after her major heart attack. Her family (some are my fam too) have all but abandoned her, I am the only one who goes to hospital. She is very stubborn, refuses further rehab care and wants to go home. She thinks we (me and my siblings) are going to give her 24/7 home health care. And, we cannot. (or some of us will not be able to do that)
Tomorrow, I speak to the Social Worker about discharge planning.
Its a sad situation, one that she has brought upon herself, but no one in the family will help or even come to see her.
I need for her to go to further rehab so she can receive the help she needs, she's refusing. I feel like I need to remove myself for two weeks or so, so maybe she will start to co-operate with them? Just looking for advice. Thanks!

Sunnygirl1 Sep 2015
I'm so sorry for your loss Shiloh. You were so wonderful to your birth mother. I hope you take comfort in that.

jeannegibbs Sep 2015
ShilohSavin, Thank you so much for the update. So often we are left not knowing how things turn out. I appreciate you taking the time to tell us, amidst the upheaval in your life.

My condolences on the loss of your mother. I hope that you can be at peace.

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GardenArtist Sep 2015
Sunny, sounds like you're answering the original post. You might have missed Shiloh's last post but her mother died a few days ago.

Shiloh, I am sorry for your loss, not just the death of your mother but more for the fact that she didn't or perhaps was unable to be a better mother to you and leave you with more positive memories over your entire life. Perhaps her last minute rehab rally was that final gift to you.

BarbBrooklyn Sep 2015
Shiloh, I'm so sorry for your loss. Be at peace. You did all that you could, and then some.

Sunnygirl1 Sep 2015
I'm not sure I understand why you would feel guilt about your birth mother going to a place where her needs can be attended to. She has extensive medical and mental issues. Apparently the professionals see this and have made their recommendations.

From the background you describe, I would not even consider providing care for her in your home. I'm trying to understand the dynamics in these types of situations. Apparently, there is something that was wrong years ago and you are trying to fix it.

It's good you are posting here. There is so much support for those who are trying their best to provide care for their loved ones. It's touching that you care so deeply about her.

ShilohSavin Sep 2015
Hi Everyone - just wanted to give an update. My Mother moved to a Skilled Nursing Facility on 9/11/15 and was doing great, had changed her attitude and was working with Physical Therapy. Unfortunately, she passed away in her sleep on Saturday Morning around 6 AM. They said they went in to give her a blood glucose test at 6AM and found her unresponsive and slumped over to the left side. They performed CPR and attempted to revive but they were unsuccessful.

It's been a rough year and week and I appreciate all of your wisdom and help via Online. It's been so great to be able to have some feedback and get some validation about the things I was going through with my Mother.

nowmymomsmom Sep 2015
Fantastic!

BarbBrooklyn Sep 2015
So, so glad!

ShilohSavin Sep 2015
Update: She has agreed to further Rehab Therapy at a sub acute rehab facility, just awaiting Insurance approval so she can be transferred. Very pleased that she made a good decision for herself. :)

Rocknrobin Aug 2015
Stop and take a deep breath. OK, now let's talk. Everyone wants to help those who help themselves. Birth mother isn't helping herself. She is going against good judgment and doctor's orders by going home. You and the case managers all know it's wrong. I wouldn't put a lot of stock in what she is telling you over the phone. You don't know what was really said by the case manager. Mom isn't making good decisions at this time. With her mental illness, she may never. I'm begging you Shiloh, don't commit yourself to taking care of her. It's too much for anyone to take on. Let her know that you will help her find a rehab or long term care facility, but other than that, you can't help her. Then prepare yourself for the guilt trip. Be firm! You can't do this! Stand strong. Also find out what was really said in her conversation with the case manager. Good luck to you and let us know how this turns our. We care about you.

BarbBrooklyn Aug 2015
Shiloh, you are so on target on all counts. Stay strong and let us know how it goes.

ShilohSavin Aug 2015
Thanks again - I know from my visit with her yesterday, she was extremely complimentary and in a good mood. She requested that I go to the store and bring her Oil Of Olay Beauty products for her face and a nail file. She also wanted a vegetable plate from a local restaurant.

She was in a fantastic mood and kept telling the nurses that I was her beautiful daughter. She's never spoken to me like that before, so it was kind of shocking to hear words like that come out of her mouth.

I know that she is an emotional vampire - because on most occasions I am so drained with the negativity and judgmental comments on every person and thing she encounters that i feel like I need a shower after a visit.

I also understand she is "buttering" me up, in an attempt to make me feel differently about taking care of her at her home.

I also took your advice and looked up Bipolar w Narcissistic Mothers and you're right - it would be an absolute nightmare!! ugg

Not only that, But I do agree with GardenArtist with her assessment of responsibility, After age of 12 - there has been very little to no contact with me, in my teens, 20's, 30's, and early 40's... not even a phone call, and she has never been to my home for a visit. But, still she thinks that her children owe her a level of care and concern that she never showed us.

So, yeah, I get it, and I understand that it would be a complete and utter nightmare, but it's still a head trip at times because she's so whack a doodle doo crazy at times (pardon the expression) lol

And, just so you all know, I can't and won't be taking care of her at home. Its just an impossibility and I refuse to shoulder that responsibility.

I did take care of my grandparents who raised me. Both have passed on now, and even then, care giving, even for people you adore and love is time consuming, energy zapping and financially a burden, but, caring for people who cared for you and raised you, that's is a completely different situation. It's a labor of love, and you are putting back into them what they put into you, the time, the caring, the TLC.

And, it all works out because there is a "mutual" love and relationship that you both share.

Ok, I am going to stop waxing poetic now.. LOL I love this message board, its helping me verbalize and get others opinions about this situation.

Love to you all xoxo :)

BarbBrooklyn Aug 2015
She's bipolar and stubborn, right? In addition to all of her medical issues that are better handled in skilled nursing. You should read some of the posts on this board from folks with Bipolar, narcissistic moms. They are emotional vampires.

You would be very, very wise not to attempt to care for her in her home.

GardenArtist Aug 2015
May I provide a recap only on the issue of responsibility:

Your original post:

"Since she gave me up (age of 12) little to no contact from her, until 2008 when she needed help after her major heart attack. Her family (some are my fam too) have all but abandoned her, I am the only one who goes to hospital."


Your last post:

'It's a real head trip and I have to fight off guilt when I think about the fact that if she isn't taken into REHAB she will need to go to a skilled nursing facility."

Guilt? What about the guilt she should feel for abandoning you when you were still a child?

Honestly and bluntly, if you allow yourself to be intimidated and manipulated into taking responsibility for someone who (a) abandoned you but (b) now needs more care than you did at the age of abandonment, then you're putting yourself in for more anguish and misery than you can imagine.

ShilohSavin Aug 2015
Yesterday they took the vent off my mother and capped her Tracheotomy, she can talk and eat again which is good, but she has been sick this week with C-Diss and is weak.
She called me from her room and started talking to me about coming home and the fact that she got the nursing staff to help her call Viva Medicare so she could speak to them about all of the 24/7 care she will need, when she goes home.
I guess I am confused because the case worker said she was going to speak with her and give her the options (rehab or skilled nursing facility) I really didn't want to go into anything with her as she sounds like she was about to pass out and exhausted. I just listened.

I have gone over and over in my head if and how I could even take care of her needs with just me handling EVERYTHING (no help from family) I don't know how i can manage even if she has 24/7 sitters. It would be different if the family pitched in and took turns helping out - but they have all abandoned her.

It's a real head trip and I have to fight off guilt when I think about the fact that if she isn't taken into REHAB she will need to go to a skilled nursing facility. But, honestly, I don't see how i can maintain two households from two locations and keep up working a full time job. I know I cannot do all of this.

Just thinking out loud, verbalizing my internal thought monologue because it gets intense in my head when I lay it all out and think about her needs, and the situation at hand.

Thanks for listening! :)

GardenArtist Aug 2015
Shiloh, if someone does begin to pressure you to take her home, you can raise the issue of the respiratory care and who's going to manage the vent weaning and the trach.

I just can't imagine this being handled at home, even with home care.

BarbBrooklyn Aug 2015
Shiloh, I so admire what you are doing for your birth mom. No many children would step up this way AND be able to maintain healthy boundaries. Kudos to you!

ShilohSavin Aug 2015
I just got off the phone with case worker at the Long Term Care Facility and I was able to tell her what my Mother wants is to go home and rehab, but that would require someone to live with her 24/7. She agreed that that is the case. I informed her that she has no family support and this would require her to have to hire sitters and care givers around the clock.

I also said, we both know that since she needs extensive rehab, that sending her home and hiring sitters will be to her detriment and she will not recover by being cared for by sitters. She agreed.

She is looking into another rehabilitative facility in our city, and does not think it would be ethical to send her home with little to no family support.

I can't believe how emotional I felt during this conversation. (I didn't break down and cry) I guess it's because, I really do want what's best for her and can see that just being sent home without extensive rehab will ultimately be her demise.

Anyhow, she is qualified for another 12 days in the hospital and hopefully they will send her to rehab for further care.

Thanks Everyone - Ya'll are great!

Shiloh

nowmymomsmom Aug 2015
Shiloh, mom should be discharged to a LT Rehab facility, they will be best equipped to handle her needs. If she refuses she may need to be placed as a dementia/psych patient would. The doctor or social worker should see this. I doubt for her own good they will let her go home with no help, in her condition it would be negligent! She needs to buck up and take the help she needs to get better and stronger so THEN she can go on with her life as she wishes.Please don't get pulled in to her abuse, you were apart many years...sadly....be there when you can, be strong and you were smart to put down boundaries! If she acts up tell her and yes, maybe you DO know what is best for her at this point, as she is not seeing clearly the best outcome for her recovery.I am so proud of you, you have done well and are on the right path with your thoughts! Love her but be firm......you have gone through enough I am quite sure! Keep us posted!

GardenArtist Aug 2015
Uh oh, I just discovered a big error.

First sentence of the 7th paragraph should read:

"When I did my search for a facility with vent weaning, one of the admin people misrepresented the situation by saying they could provide for vent weaning."

My sincere apologies; the words just seemed to get tangled up after I typed them!

And Shiloh, congratulations to you for standing your ground.

I don't think your mother realizes that what she wants is not necessary what she can have, particularly in her physical condition.

When my father was trached and on a vent, he would LOVE to have had some nice juicy ribs. But he couldn't have them until he was completely vent weaned.

Hang in there!

ShilohSavin Aug 2015
Thanks everyone, still awaiting a call from Discharge Planner at the hospital, I called and LVM for her to call me back. I am unsure what she will say, other than what my birth mother has already stated to me last week. (that she will not go to another facility for extensive rehab and wants to go home and rehab).

I want to be strong and show love to her through this ordeal, but caring for her and stopping my life for someone who abandoned me at age 12 is quite a far stretch for me to take upon all by myself.

I do understand that she is attempting to use me, and I am taking steps to reinforce good boundaries and take care of myself during this process.

I plan on stating to the discharge planner that I am unable to meet her needs at this time, as it will require me to move in with her and give or arrange for 24/7 health care. And, additionally, I am not equipped to deal with a VENT/TRACH and her other major issues. She is also verbally abusive and curses me and tells me to SHUT UP in front of her case worker and other care givers.

I've spoken with her about this, and she said she is sorry but I am acting as if I know what's best for her. I told her that I expect a level of respectful communication from her, and will not tolerate the verbal abuse and manipulative behavior that she's exhibiting. I think it went in one ear and out the other, but atleast I put it out there and laid down some boundaries.

I have also limited my visitations to once a week now because of the verbal abuse.

Sigh... Anyways, I thank you all for your thoughts and prayers, Its so good to be able to just tell someone what's going on.

Hugs,
Shiloh

GardenArtist Aug 2015
There's another issue here and it's the issue of ventilator weaning and maintenance of the trach collar, and probably suctioning to clear fluids. This is NOT a job for a nonmedical person; the vent weaning needs to be handled by a respiratory specialist.

I don't even know if Medicare would fund ventilator equipment for a home care environment, but I'm guessing no doctor would script for it under the existing conditions.

We did have a speech pathologist after my father was ventilator weaned, but that's much easier to deal with than vent weaning.

Under these circumstances, there's no way your mother could be treated in anyone's home. Perhaps one of the treating medical personnel at the facility should explain this to her.

She'll need to go to a rehab facility that does have the capability to provide vent weaning. In my experience, there aren't that many, only 13 in Michigan at the time. And one of them was somewhat dishonest about its capacity.

If you're going to take point on finding a rehab facility for her, you will have to check them out and verify that they have vent weaning capacity. The discharge planner and the current respiratory personnel can give you guidance on what questions to ask. The discharge planner should also have a list of facilities that do have the capability for vent weaning.

When I did my search for a facility with vent weaning, one of the admin people at the one which didn't misrepresented the situation by saying they could provide for vent weaning. When I pressed for more information, she finally admitted that their "vent weaning" consisted merely of oxygen at room air level. They had no respiratory therapist to provide the weaning.

In addition, I would be more than suspicious and reluctant to step in to care for a woman with complex medical problems who abandoned me when I was only 12. Don't let her use you, which is what she's trying to do. And don't let her guilt you into feeling obligations which she herself rejected decades ago.

This is a situation better left in the capable hands of medical personnel and government involvement to take care of her on a long term basis.

You can still keep in touch if you wish through sending cards, or calling (if she's able to speak, depending on the stage of her vent weaning).

jeannegibbs Aug 2015
Be very, very, extremely clear with the discharge planner that your mother has No Family Support. She will be going home to no help. No help will be forthcoming from family. No, she cannot come home with you. No, you will not take care of her at her house. No. No. No.

This may make you seem cold hearted. Don't worry about it. Just say no as often as you must.

Your poor mother is mentally ill. She was not able to raise you to adulthood. This is terribly sad. But placing the burden on you will not change the past and could be very damaging to your future. I truly feel sorry for your mother. I hope you can continue to show her love. But do not accept day-to-day responsibility for her!

It is kind and responsible of you to visit her in hospital and to meet with the social worker in her best interests. Just be very careful of the old adage "No good deed goes unpunished."

And if the social worker tried to work on your guilt buttons, stay strong and come back here to tell us about it. We are on your side!

BarbBrooklyn Aug 2015
You certainly need to make it clear to the discharge planning folks that, contrary to what you mom thinks, there will be no one at her home to provide care and that she cannot be discharged to your home. You would have to consent to that, unless she has legal residence there. If you cannot make her understand that you don't have the capacity to come live with her and provide hands on care, and if she is unpleasant about it, then staying away for a bit might make the point, although it would be sad. If she does not cooperate in rehab, she will be discharged to long term care, if it determined she can't live alone safely. Is she comprehending these facts? Have you spoken to the social worker or the psychiatrist who is treating her?

Can you continue to visit and be her cheerleader in rehab?

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