The past two weeks have been difficult. My mother is in her early sixties, has stage four COPD/ Triple Bypass/ Eating Disorder/ BDP/Anxiety/Arthritis/Hip Replacement/Cervial Fusion etc. Shes a mess in a nutshell. Shes been on a hybrid of hospice for over a year and about a week and a half ago called me saying she needed an ambulance and was having a heart attack.
We discontinued her hospice treatment and got her to an ER. She had over medicated on methadone that was prescribed and xanax and was diagnosed with sepsis. Around the new year she had an incident in the middle of the night where she attempted to smoke with her oxygen concentrator and started a fire, luckily the burns were not severe but the Doctors were concerned because she has been taking a lot of falls lately as well. She gets manic and doesnt think before she starts moving.
About a week passed in this hospital stint and she was continuously having panic attacks but the doctors switched her to antipsychotic meds and decreased her xanax as they noted this could be causing some breathing issues. Vitals improved, oxygen levels improved all seemed well with the exception of her mental health and general decline. She weighs about 84 lbs (5'6") and doesn't sleep well.
This entire time shes been really adamant about going home but we don't live with her she has a roommate and based on the falling, abuse with medication and just impulsive decisions we were very fearful of sending her back simply with the hospice in place. My mother is very convinced shes going to die any day but the doctors at the hospital told her and us that if she went to a rehab and did what she needed to do he believed quality of life could improve and she could have another 5-10 years. She fought for days about going to a rehab but eventually gave in as we told her that there was no reason for her not to make an effort.
WELL she was discharged yesterday and moved to a nice facility and from there she was having a full breakdown since. Screaming at the top of her lungs the entire time about her meds, how shes dying, how shes going to kill herself, unable to listen to reason. This went on throughout the night into today. She insisted on having a DNR reinstated then took her oxygen off in an effort to "die" then spent an hour screaming to rip up the DNR and that she wants to live. Needless to say the nurses at the facility were done with her behavior so when she said she was dying and needed to go back they called the ambulance this afternoon. At this points the nurses were scolding her to be quiet because it was so over the top.
Back to the hospital, testing done, nothing is wrong just anxiety according to the doctors. They call saying she needs to be discharged so we called the facility since rehab is still recommended and they said the director made an executive decision and wont take her back. We told the hospital she was threatening suicide so they are going to keep her overnight for a psych eval but I really dont know what to do here come morning. Everyones trying to throw her to the dogs and she needs help, I don't believe shes equipped to just go home and my sister and I still work full time, have kids and bills. We were hoping to get things worked out for her while she was in the facility for the next month or two getting stronger as well.
We are both exhausted. She wont listen to any type of reason. She expects us to just immediately drop everything and caretake when we've all been informed her health can improve and with effort she could live somewhat independently. We are both fine with contributing as long as shes also contributing for herself but that isnt what is happening here. Simultaneously we feel guilty and terrified that if we set boundaries with her that something awful will happen.
I feel like if we try to get her in another facility the same thing will happen again. I'm angry, I'm sad its just exhausting.
Anxiety is a very real diagnosis and there is treatment for it.
Your mom needs to get into a facility that will treat her anxiety and THEN go to rehab for her physical issues or she needs to go to a rehab with a good psychiatric department which can do both.
What she cannot do is go home. Make that very clear to b the discharge planners.
You didn't cause you mom's mental health issues. You have no cause for guilt. You must be feeling tremendous grief over mom's current condition, but don't let that cloud your correct perception that she needs much more help than any untrained person can give her..
I appreciate you taking the time to reassure that we should not feel guilty about this or trying to get her care.
Difficult?
It's just you and your sister handling this, is it? Do (either or both of) you have formal power of attorney or guardianship?
When would you think it's time to step away and let whatever happens, happen?
PS, just checking - by BDP do you mean BPD, as in Borderline?
You are ensuring that she gets the help she needs from social services.
You are allowed to say "no, sending her home is an UNSAFE DISCHARGE and we are not available to be her caregivers. There is no law that says that you are required to become her hands on caregivers.
She needs a psychiatric hospitalization right now. Not to go home.
If the psych hospitalization ends with THEM sending her home after 72 hours, you call Adult Protective Services and report her as a vulnerable adult.
In fact, you should probably call APS today and get her on their radar since it is coming up on a weekend.
Many of us have learned here that walking away is often the only way to get the social services folks to provide the care needed.
If the Social Workers "threaten" that the state will get guardianship, you say " yes, PLEASE!".
Can your mother go on hospice in a facility and not at her home? Talk to social services for her county. How is her current care being financed? I'm hoping she's on Medicaid and you and your sister are not paying for anything...
You’ve mentioned in your description that “….She won’t listen to any type of reason”. I believe you.
I believe that she has performed self destructive acts, whether purposefully or impulsively, that cause her to be a significant danger to herself.
It seems from what you’re describing that you and your sister have attempted todo everything possible to help her. Unfortunately, it’s possible that she may not be able to accept or benefit from help.
If the psychiatric eval. is worth what it costs, you should receive recommendations for her management. Although they may not be as palatable as you’re hoping, do whatever you can to be objective. You have ZERO reason to feel guilty about anything you’ve done previously, nor with following explicit recommendations for her future.
“Setting boundaries with her” sounds as though it may be beyond where you all are now. If the psychiatric eval. Doesn’t give you a recommendation that YOU can be comfortable with, go after a second opinion.
If you are offered any solution that contains MANAGEMENT of her behaviors, with total awareness of their severity, give it a shot.
NO ONE is benefitting from the way things are going now. Custodial care in residential placement MAY wind up being the best of any of the bad choices you’re given. In cases as complicated as hers, there may be no good choices.
there isn’t anything you can do. Get social services involved and state that neither you or your sister can look after mum.
point out that the hospital etc. has a duty of care and to release her would be unadvisable as she is a high suicide risk. She belongs full time in a secure environment for her safety. I would have her sectioned under the mental health act.
As your mum appears to lack any sort of reasoning skills I doubt you or your sister will be able to install boundaries. I’m afraid it’s time to make decisions for her.
As adult children we are all put in these unfair situations. You and your sister have done your best it’s time to hand your mum over to the authorities to deal with.
They also have a book that is similar to the website.
Can you each give the other permission to stop? If you can't, can you help one another find support from the right kind of counsellor or therapist?
I used to volunteer at the refreshments bar in our local cancer clinic. One of my fellow volunteers was a loving grandmother whose granddaughter was an inpatient being set on her feet (again) after a technicolor BPD episode. The lady described to me how her mind just went blank when this beautiful, talented young girl deliberately and slowly poured boiling water over her own forearm in "retaliation" for some perceived slight. "What do you do when she does that?" she asked me, helplessly.
When we counsel family members of people with BPD to step back and maintain boundaries a) it isn't that simple; and b) I think we need to do a reality check about what *sort* of behaviours they're facing.
But the point for you and your sister is that however awful the consequences of your mother's being left alone might be, as long as you treat her as *your* responsibility you prevent her from being the responsibility of people who have far more authority to intervene than you two have.
What does your sister think?
Based on your post, your mother’s physical health is being managed. The decline of her mental health is at issue. Most primary care physicians do not have the expertise to treat mental illness and her doc has prioritized breathing issues over anxiety, etc. She needs a solution to treat both the physical and mental issues. Make an appointment with a neurologist or a psychiatrist – both of who should specialize in geriatric issues - to diagnose and treat her mental issues.
Your mom is despondent and in panic mode. And she’s exercising the only control she has – manipulating others by throwing a fit and making life miserable for everyone around her. Tell her you love and support her, but that you will no longer tolerate her behavior. Her words are contradictory “she’s panicked about dying yet she’s going to kill herself.” Let’s the doc sort that out. Just be there to love her.
If it is determined that your mom has her faculties about her, she gets to live her life as she chooses. You can’t save her from herself because you don’t agree with her risky choices. But you can help her find options, including medical care, that she can choose to follow – or not. If she insists on going home, she might agree to use a “Fall Alert” system which would allow her to push a button to receive emergency assistance and give you some peace of mind.
If her physician provides a written recommendation stating that she can no longer live on her own, you may need to seek a court-ordered guardianship unless you or your siblings have POA. If your mother refused to give you POA, let her know that she may become a ward of the state and a state-appointed guardian will make all decisions about where she lives, her medical treatment, and her finances. Tell her that working together is in her best interest. If she shuts you down, perhaps write her a letter that she can refer to when she is less volatile.
If you do decide to place her know that most SNF, AL, and even Hospice In-patient facilities routinely decline to accept disruptive, uncontrollable patients. They would want to get her mental issues under control to best manage her care. Any facility that you choose should have a physician on site because your mom seems to need that level of care. Tour facilities and interview the intake specialist to ask how they would address your mother’s outbursts and attempts to self-harm.
Of all your mother's ailments, you did not mention Alzheimers (if you did, I didn't see that). You mentioned her desire to smoke near her oxygen tank and that she had a roommate..............she is a danger to herself and the public. It might be time to place her at a psychiatric hospital for her safety and the safety of all others: if they can accommodate palliative care with that, it will probably offer her peace and acceptance.
What you and your sister need to do is protect yourselves from her.
I read your later reply that you have been dealing with her behaviours in one way or another for 33 years.
It is time to stop. You and your sister are not responsible for her. She is an adult, if she is not capable of following doctor's or rehab orders, then perhaps it is time to turn her over tot he state?
I have a family member with BPD and I have had to make the heart wrenching decision to step back and let her solve her own problems. As long as someone else steps, up people with BPD do not have to take responsibility and will blame others when things don't work out.
I think you and your sister need to get as much in writing to put the POA into effect, or get guardianship, or walk away and allow another agency to take over her care.
What is never going to work is letting Mom steer this ship, and that's what I'm seeing.
Mom may need to be evaluated on the psch unit and have meds adjusted to help her agitation and extreme moods.