Hospice eval didn’t go well. They denied her. Said she wasn’t “terminal” enough. So now what do I do?! Aunt is in such bad shape. She has 5 more post-hospital nurse visits left then NOTHING. Since the rapid decline in bp & pulse it’s not reversed as of last night & she’s in Afib rn with rapid increase in BP. It was determined her tests showed she had a heart attack while in the hospital & this was the same thing that happened then. Almost exactly, except for the 2 weeks of dropping BP & pulse prior to reaching stroke/heart attack levels. I just don’t know what to do. I’m literally sitting here crying because I have NO help at all with her. Her “requests” have turned to demands. She’s demanding every phone call I make to anyone be made in front of her. I can’t even leave the room to use the bathroom without her calling me on the phone asking why I left her. I NEVER leave this house & it’s gotten to where I can’t even step outside for sunlight or fresh air without getting hollered for or her blowing up my phone. I have no one who will sit with her because it’s not enough to have someone just here she wants them in the den with her & watch her black & white shows or she wants to keep talking about all the stuff her oldest daughter stole from her. Or she starts getting hateful with people & being verbally abusive & demeaning. I’m a hairline away from putting all my stuff in storage & living out of my car because I have up my house & whole life to take care of her in what was supposed to be temporary until she could walk again (but that’s be confirmed will never happen again) & letting her go to a nursing home & let them take the house. I can’t keep living like this. I’m about to snap completely. She won’t even let me tend to my son when he has seizures. She screams & hollers & says I need to be with her & if he cracks his head open & dies then so be it. I need help & I don’t know what to do. She’s only going to get worse & this is already really bad.
No, this is you making the decision.
This sounds like a very mentally, emotional, psychological, and physical poisonous situation for you to be in. GET OUT ASAP.
We all need to make room for something better to appear by getting out of current situation (we may feel stuck in due to fears and life-long patterns of behavior).
She isn't doing all this to you. You are. Tough love. Yes.
You need to know you can change your situation. And only you can. Gena
Now as to all this hospice business, not only did a company who would profit decline her, but she’s all about hanging on as long as possible. That’s her right and shouldn’t be taken away because bluntly, it’d be easier for all if she just died.
Ill reiterate the same advice I gave to a single mom with a mentally disabled 20 year old. Which is that it’s best to assume you will get nothing from her. What you can do to leverage this time is have your 18 yo assessed for ssdi and ssi, get at least yourself on general assistance and food stamps, and build a cushion of say 2000 so that the two of you can move to at least a motel, from which point you then look for a better environment.
Call another hospice company. Have her doctor talk to their medical people. Contradict her assertions that she is "fine" when they interview her.
I still think you need to get her back to the hospital, leave her home and get on with your lives.
P.S. We all thought this was temporary....which could be 1 mo, 1 yr or 5 yrs or more
This person would fall during the hours I wasn't scheduled to work and refused to let me call the ambulance for fear of being placed in a home.
I got accused of stealing and other things. The straw that broke the camel's back for me was when I stayed in the basement waiting for her laundry to get done. It was the only time I got any peace. I felt guilty for doing that. Instead of watching the news she decided to start turning out the lights in the basement to force me to come upstairs. She refused to move so I could get by to clock out and threatened to call APS if I touched her. I had put up with two months of this abusive nonsense. Then I had to hear how worthless I was and I was not doing my job, and that my job was to take care of her. It seems like you life gets further and further away from you, and these people just take up all of your time.
I had it with this person and their abuse. I called my employer and told them I couldn't do this any longer with this particular person. This person was non compliant and would not do anything the doctor's told her to do. I would sometimes get to her home and she wouldn't open the door. It would take me an hour some days just to get into her home.
Finally, I had enough.
I did pretty well at not having a caregiving situation get out of my control. If a client was beyond my control, I dropped them and did not return.
You say that you were only supposed to be a temporary caregiver to your aunt.
What was the plan for when your time as her caregiver would be over?
Now would be a good time to put that after caregiving plan into action.
There's no reason why you cannot walk away and I do not think you are exaggerating how your aunt is. I was an in-home caregiver for almost 25 years. I've seen all kinds and I believe you. You have helped her out and did right by her, but now it's time for you to go.
Her leg is permanently broken and the good leg cannot take weight. So, I'm going to assume that she doesn't walk anymore. Ignore her at night. Leave a water bottle and purchase one of those Purewick systems and ignore from 11pm to 7am (or whatever third shift hours you prefer). Let her scream and yell. She'll tire herself out and will stop when she realizes no one comes running in.
Don't let her have a phone during these hours either. If her screaming and ranting gets too bad call 911 and have her taken to the hospital.
Time to change the dynamic. She has dementia. The accusations of her daughter stealing from her, men outside her window, and won't allow any cleaning or laundry done, that's dementia. She belongs in a nursing home.
You do not have to be with her or go running in when she starts up. If there's nothing she can get hurt on and she cannot wander, let her scream and cry. Ignore her. Then get the hell out of that house.
Initially, the plan was to help her literally get back on her feet. Uncle died in September & youngest daughter lives 4 hours away & works @ a live-in facility for severely disabled kids. She does what she can & is well aware of what goes on here daily. I’ve sent her voice recordings. My son & I, as well as others, are named in the will for specific things. The house is willed to my fiancé. He has financial POA. She draws her social security, a widows benefit, gets a small pension (under $200) & has a rental income from a housing subsidy assigned to her deceased MIL’s house. So in addition to her Medicare, she could most certainly pay for a state NH if she were put in hospice status; right now with being denied & being essentially kicked out of a skilled nursing facility, no other place will take her. She will be getting palliative care & I’ll find out Wednesday afternoon exactly what services she will be assigned but I made it abundantly clear I need help & she also needs a comprehensive mental evaluation; this person needs to know exactly how to get answers & figure out what’s going on with her - manipulate the manipulator. I also stated said person needs to tell her exactly what she’s doing wrong - the cold hard truth from someone besides us. No placating, no false hope, not allowing the pity party guilt trip. She is very delusional particularly when it comes to her conditions & situation. All the doctors are lying, there’s nothing wrong with her, she’s gonna get out of bed & walk. So after feeling like a broken record & very exhausted yesterday I snapped. I told her to stop with the lies & denial & outrageous demands & fabrications. She is not ever getting out of bed, these things are most certainly wrong with her, she’s not just going to wake up one morning & be all better, & it most certainly is going to get worse. I proceeded to tell her the whole earth doesn’t revolve around her; it’s not about what she wants, but what she needs & I’m not a personal slave. From now on, I will make sure she is fed, that she has enough water, & that she’s clean. We will sit with her for dinner & not for hours & hours; no one wants to watch her sleep. When she has a medical emergency she will
go to the hospital, without arguing or begging for days. She will listen to what the doctors & nurses say & not twist it around or lie, because I will ask the medical people for the truth. I will also “tell on her” as she says. What’s bad is that it didn’t start this way. It didn’t get this way until about the end of May & then it was a downhill battle that got worse every day. I’m just going to have to start acting like the home professionals that would have this job - be an actual caregiver not a babysitter.
Or put aunt in NH.
You cannot continue, toxic, abusive environment for you and your son? This will only get worse.
Any advice will be useless if one of you does not get away from this situation.
My mother managed to get her pacemaker appointment cancelled by telling a single nurse at the Heart Failure clinic that she didn't get out of breath much and could easily walk to the shops. Utter baloney but what she believed at the time to be the "correct" answer - i.e. the one the nurse would like best. By purest chance I found out just in time to sort it out; but if I hadn't happened to ring to check about parking... That was the last time I ever let mother talk to a practitioner on her own, I can tell you.
Right. Your mother is talking out of her wotsit, and everybody knows it. Call, email, and ask for back up in writing or on email from everyone you can think of. The decision is b/s, the hospice assessment needs to be redone. Don't give up.
Your priorities are not where they belong. Son #1, You #2, everyone else -- WAY down the list. I suggest you don't get tangled up with so-called fiancés any longer, and actually marry people you want to spend your life with. It would help keep this kind of thing from happening to your child. Fiancé is the new term for someone you're never going to marry.
Even when they have kids it's still just a 'fiance'. Ridiculous. A fiance today is only just about one step above a booty-call.
Just the other day my ex-husband was asking if we are now considered fiances. I was teasing and said that you can't be a fiance without a ring.
Then he reminded me that I threw my engagement and wedding rings into the San Francisco Bay. They were nice rings too. Live and learn I guess.
You are going to have to learn to ignore her if ur going to continue on. I have my phone set for Do Not Disturb from 11pm at night till 9pm in the morning. That one little "bling" that a text is coming thru will wake me up. Look up "Grey rock method" you may want to try it.
I can't believe she was turned down for Hospice, with all that is wrong with her. Do u think its because of her weight. Means it would be a 2 person assist. We had an aid working across the street from Moms. The lady she was carrying for has had mental problems from as long as I can remember. Her husband cared for her till his death at 93. Both her children had died. The aide was being paid to care for her but no checks for 2 weeks. She told me that she had called APS that she was leaving for non-payment. APS came and took the lady to a NH. Too bad ur not a paid caregiver.
Hospice isn't going to turn someone down because of their size. Their size may be why they have to receive hospice care in a facility though.
”…….letting her go to a nursing home…..”? How about PLACING HER in the appropriate level of residential care for her needs. Contact SS and find out any subsidies available to her. Her current situation is really no better for her than it is for you or your son.
Unless you are wearing size 3X t-shirts, YOU DO NOT HAVE ANGEL’S WINGS (yet).
You are a HUMAN BEING with a child who needs your care and surveillance.
You need to be able to nurture and CARE for yourself, and it IS your right to expect and provide that for yourself and your son.
Unless you are LEGALLY committed to her you have no more obligation to take care of her or listen to her ravings or offer her comfort than the Amazon delivery person.
If you DO have a legal connection to her, seek legal help to determine how to get out from under this.
There are MANY people here on your side, and you DESERVE better. You DO have options but you have to step up and take them.
Are you kidding? There is no reason on earth why you have to be living in such abuse and misery. Your son who has seizures should be the number ONE priority in your life. Not some ingrate, a$$hole relative who treats you worse than a heap of garbage.
Walk away and let her fend for herself. Make a call to APS and tell them she's an at-risk, vulnerable adult who will be living alone (tell them the date) and will have no care. They will take it from there.
Inform the olderst daughter who she accuses of stealing, or any of her other kids that you're done and out. Let them figure out what to do with her. You and your son must go.
If you have nowhere to go right now, when the next health crisis happens (and it will) send her to the hospital and ask them for a social admit. Tell them that she has no caregiving at home because you are no longer providing it. They will keep her and place her if she's considered an unsafe discharge. In the meantime, look for somewhere else you and your son can stay.
[Earplugs are cheap, you know. You can get them online.]
What do the post-hospital nurses say about her care needs?
This may not be a factor (now or future) but I mention it as it comes up with later stage CKD.
It is an active treatment, not hospice/palliative. If Aunt decides to have this treatment, she will need a caregiver to learn & provide the home dialysis treatment or arrange transport to a dialysis unit (via stretcher if bedbound). Treatment is usually several times a week.
Dialysis = Significantly higher care needs +++
Just like anything else get another opinion.
And..next time there is a trip to the hospital you make it VERY clear that you can no longer care for her. She has no other caregiver she can NOT be discharged back to her home.
If there is no one else that is willing to care for her the court will appoint a Guardian for her.
There are women's shelters around that will take you & your son. Time to end this cycle of abuse. Your son must be your priority and he is not.
State the very recent heart attack, worsening impaired cognition/insight, worsening bevariour issues. Use Barb's word *delusional*. It is accurate.
You have tried other resources like hospice but Aunt now requires 24/7 care, possibly end of life. Her needs now exceed what you can do. It's that simple.
Impaired cognition is common with end stage CKD. Aunt's denial is probably part of how she is coping. She is not going down without a fight - this is her right.
However, it is not her right to insist you take care of her physically & mentally 24/7.
Do what you need to do for (1) her care and (2) YOURs. Taking care of YOU is as important, if not more so, as taking care of her needs. If you are not available due to burnout, you cannot assist her.
* As her condition changes, contact Hospice.
* You do not mention anything about finances. Does she have funds to more into a facility? or get Medi-Care of Medicaid (?) assistance.
* You need to get some distance from this situation ASAP. Get a caregiver in for a few hours a day / a few times a week, or more or less. YOU must get help and give yourself a break. NONE OF US can function on empty. Hire someone immediately. If she doesn't have the funds, find out what social services she is entitled to.
If you are PoA for your Aunt, you can consider resigning and then call in the county to acquire guardianship. They will take care of her every need. One sticking point is that she lives in your home. This is why it is critical that you call 911 and have her transported to the hospital. Then make sure you keep telling them she is an "unsafe discharge" and you cannot give her the level of care she needs because you already have a son with medical needs and you're by yourself. Do not believe them if they press you to take her home and they will "help" you care for her: NO, they won't. Do not retrieve her no matter how much pressure they exert. Been there, done that.
BarbBrooklyn's advice to get her into a hospital is good advice. Please follow it.
If not, you need to call Adult Protective Services and report that she is a vulnerable adult living alone, bedbound with no understanding of her condition.
If you are, you call 911 and TELL them that she needs to be transported to the hospital because she is delusional and non-compliant.
Is your son a minor? Who is caring for him?
from 6 am to 6 pm. Then the incessant phone calls through the night over stupid stuff. I’m sorry but don’t call me 14 times at 3 am because you’re lonely. Or to change your channel when you can operate a remote. Or to hand you tissues that are right beside you. Don’t demand me to come sit with you & watch the news & fall asleep in 3 mins & flip out when you wake up because I’ve gone to try to get something done.
I don’t understand how someone can be in the shape she’s in & not qualify for hospice - to be really bad but not bad enough. One cardiac event away from coma or God knows what else. I mean I can’t even get her a bigger bed that she actually fits in because I can’t get the hospital people to actually document an accurate weight or do measurements or anything. She has 1 inch or less on each side of her mattress right now. A 36” mattress. That means she’s 34” + across. Turning her for cleaning or bowel movements (because she can’t poop in a bed pan properly she can’t push it out unless she’s on her side) involves literally shoving her into the rails. I nearly shoved her over the rail yesterday. Burst of adrenaline from being so mad I guess. I’m so desperate for help. I don’t want to be homeless & have my son worry about it. He can’t be too stressed either or it increases seizure activity. (It’s been a task shielding him from all this mess).