My wife and I have been fighting a lot more recently. My mother is currently in a care facility that is nearly two hours away from our house. It was the only facility that would accept my mother. She is on Medicaid and she is in a locked down memory care unit in a SNF. It is not the best place, but that is besides the point.
My mother's issues are slightly complex and nuanced. We have tried a plethora of treatment options to deal with her behaviors when she gets triggered by something, but nothing worked. That is when the officially gave her a Dementia related psychosis diagnosis on her file, which I did not know was like a major red flag that limits the pools of faculties that would take her greatly.
The issue is her delusions themselves are not considered violate or safety hazard in itself, so her medical team simply said all we can do it mitigate and remove her triggers. Problem is my mother's trigger is essentially being left alone. If she has someone with her that actively engages with her she fine, as her doctor puts it she is "pleasantly demented" that is the issue, no place will provide that, and I cannot afford to provide it,
Her currently place took her in by the grace of God, but I pretty much have to go 3 to 4 times a week minimum or my mother freaks out. This is where the fights with my wife stem from. Prior to her placement, I was paying for PCA services, with a minimal hours provided by Medicaid, was something like 28 hours a week. What a joke, I covered the rest but I was not able to sustain it so I had to place her cause Medicaid is limited in what they provide care for.
I was out with my wife on Valentines Day and my mom's facility was blowing up my phone because got it in her head she needed to get back to home to me. Part of her delusion is I am still a child, which makes matters far worse cause she gets into this mother bear mode that cannot be dissuaded. I tried to claim her down via FaceTime but she was not having it, so I had to cancel our plans and drive down, while talking to my mom the entire time. When I arrived I was able to relax her, reading to me relaxes her. We tried to do it over FaceTime but as mentioned she was not having it.
My wife and I got into it, she told me she felt neglected, and her needs always had to come last. It is not my intent, I have tied to explain I am currently looking for a care manger to help me out, but they are pricey and it does not solve the issues of her behaviors either.
Putting her a psychological facility is also not a solution, I spoke with her doctors and they strongly advice against it. The way the explained it to me, is, what she is feeling is a response to a trigger and a valid one. In her head a group of people are keeping her away from her child. When she was home it was not an issue because I legit was across the street. We got her into an apartment across from our house.
It is not so simple here. because my mother still can retain information to a degree so therapeutic fibs only go to add to the powder keg. When it mind catches up with the fib she explodes. Thus why I visit as much as I do.
I am at a freaking loss, I want to legit just not wake up so I do not have to deal with this shit anymore, but I understand that is not possible. I am sick of fighting. I know my wife feels neglected, but my hands are tied.
As the admin of the facility told me, I need them more than they need me. They told me this after I told them I could not make and asked if they could figure it out. She laid into me, and warned me next time I try to pass the buck to them she is gone. It took me FOREVER to find this place. We sent out her Medicaid assessment to over 100 facilities. The nearest one that would take her was nearly two hours away.
Sorry for my rant and stuff, if you have more exact questions please ask.
SO doing things "by the book" may not always work and one can't simplify it that way. Its too simplistic to say " talk to the person with dementia as if you are entering their reality", in my opinion. Yes sometimes that will work, sometimes will backfire, depending. I've found that out the hard way.
Somewhere I read that each elder with dementia is unique and different from others.....
Part of which was my fault also since I did burn through a bunch of money following that advice moving her closer to us-across the street-paying aides out of my pocket.
I need doctors that live in reality. I should have known when I asked what they would recommend for placement they told me about places that are like 15k a month.
Doing the same thing over and over will get you the same results over and over.
I don't know your beliefs but will pray over you and your situation and that there is a better way than how things have been.
Allegedly the current plan is to send her back to where she was. The hospital has not given her any medication due to the one to one. I told the social worker without an adjustment we will be back here but they do not want to listen but I have refused to take her.
They tried to play I am her guardian and thus it is my legal responsibility to find placement.
I called a couple of elder care lawyers and have some consultations lined up for next week. To see what is what.
Wife is still upset because this is still taking up time, since I was unable to get time off of work. I will give her time.
The advice has been a great help and I am trying to apply it. Next step is to find new doctors for her.
What about a Geriatric Neuro Psy doc. I, too, agree with others on the forum, a new medication perhaps to calm your mother to take the edge off.
These things do work but often take a little time to do their thing. I know it's hard when you have a job, a spouse and your mother whom you love. They can be like little kids. It's heart-breaking.
The two hour commute is no easy feat especially when you are working. Have you contacted a Social Worker. Was your father a Veteran during time of War? Are there smaller facilities in your area and can you get your mother on a waitlist?
My question is what would NH do if you just visited once a week (or less, mabye less is more in this case) and let the chips fall where they may.
They cannot for you to take her They would have to deal with the state though I guess that depends on filial laws in your state although those are fuzzy too
My state is one of twenty where a child has no responsibility.
Is Mom currently in the ER of a hospital? If so... under NO circumstances are you to let them discharge her to your care with the promise that they will work something out for you tomorrow. They won't and your wife will have a good reason to pack up and leave. In fact, I would communicate with the hospital social worker by phone only. If they put her in a cab and send her to your door, send her back to the hospital and/or call the police if she refuses to leave. I don't care if it's a snowstorm... do NOT let her into your home as the only way you will get her out is in a body bag!
What kind of facility was Mom in (the one with the lying, deplorable doctors) prior to the latest stint in the ER? Assisted Living or Long term care? If it was Assisted living, they are not (nor do they have the staffing) able to provide one on one care. Long term care may be able to provide it but only for a short term (with the staff shortage, they don't have enough staff either.. unfortunate but true). In both facilities, they are responsible for the safety of their staff and other residents. What I don't understand is the doctors who won't medicate her to protect their staff and residents!
Sounds like Mom needs to be evaluated in a psychiatric hospital which, in these day are few and far between unfortunately. If the hospital can place her be aware that they will place her in any facility within the state that will accept her so it may be further away. That's a good thing because you don't really need to be visiting quite so much regardless of where she is located. The woman that is driving you nuts and ranting and raving is not the Mother you knew growing up. She, regardless of medications, may never return so learn to cherish the memories you have her of from your childhood.
Rockandhardplace, I believe you said you are in the US. Can you tell us what state? I ask because some states Ombudsman and Dept of Health are more "on the job than others" and I would like to do a little research.
Has Mom been officially declared incompetent by a doctor? If so get that signed statement in writing! And stop paying for her care out of your funds. Is anyone PoA?
As much as you would like to, it is sometimes impossible to fix everything. You can't fix Mom and the grown man that you have become can't spend his days letting Mom read to him because it makes her feel good even if you were not married.
I am so sorry you are going through this. Please keep us updated.
This is so hard and it is a struggle to remove the emotion from it all and take a step back to be able to see a way forward.
Keep this in mind...no matter what you do, your mom will still have dementia and will still need to be in a facility. Don't wreck your marriage and your health over it.
If your mother's behavior, when you are not present, warrants them to bring in a psychiatrist to prescribe appropriate medications to better control her behavior, paranoia, and delusions, that it what they should be doing. Just because someone needs Medicaid is not reason for lesser care.
My husband is in a facility where his behavior got a little combative and his medications were changed resulting in better behavior. However, if he became an elopement risk and combative, they would have had to send him to a more secure facility, but the responsibility is on them not me. I am angered on your behalf that any facility would state that you are passing the buck. You and your mother are the clients or customers in this case. You are not there to serve them.
You and your relationship to your wife need to be your priority at this point. It cannot be said enough that caregivers need to take care of themselves first to be able to continue care for another.
My heart goes out to you. I understand the distance / grateful that the facility accepted her. Still - not an easy situation.
My immediate thought was to research volunteers or pay a person to visit (care provider) 2-3 times / week.
* Get her medication assessed / adjusted (to keep her calm). It can take a bit of doing to find the right mix of meds (I went through this with my client who was a tyrant - and yet THAT means she was scared, her brain was changing (in scary, uncontrollable ways to her ... and perhaps would be frightening to all of us), she is confused. All understandable.
- Your mom seems to need some socialization; a person who 'cares' --- holds her hand (if appropriate), smiles, looks her in the eye and talks to her calmly. She needs a hug.
- Get your anger and stress OUT before / other than pointing the finger at the staff / administration. Obviously, this approach is not working for you. Try the approach of "what do you recommend" "I need help." In other words, humble yourself and come across as WANTING TO work as a team to meet your mom's needs. Certainly there is a time to hold a facility accountable ... this isn't the time to be pointing fingers (this is your stress talking i.e., "I don't know what to do YOU fix it"). This doesn't work.
- The wife. Find quality time with your wife and listen to her. Don't 'use' that time for you to dump (?) express your dis-stress about your mom's situation. Once you listen to how your wife feels, she likely will want to support you. Again, humble yourself and ask her "how can WE be a team" in this situation?
* While your mom still has some memory / cognitive ability and fibs do not work, as you indicate ... tell her "we are working on it" - leave the situation open ended.
- Never ever argue with a person inflicted with dementia. (Or anyone emotionally / psychologically activated). Shift to a space of COMPASSION as she is scared. Realize this - in her head, this is a 'life and death' situation. When you shift to "I KNOW how you feel mom..." If you don't know something, say what I always say "That's a good question, I'll look into that." Then stop, change the subject, hold her hand, smile. Give her a hug. In other words, acknowledge her as she needs to be acknowledged (= heard = she is still an important human being).
From what I can tell, you need to set some boundaries and stop 'running' all the time. (Facetime, talking to her the entire time you are driving, etc). You need to find support so you can relax a bit - or a lot - so you have your mental facilities to humbly interact with all who want to support you (and your mom), i.e., your wife, the facility.
I'd recommend you arrange a couples massage for you and your wife.
Surprise her with this special 'our time' / quality time. She will appreciate it.
... and so will you.
Lastly, and equally important: Get a male doll (okay, a "Ken") and tell her that this is her baby... try to see how / if you can shift her feelings of wanting you / the attachment she has to you, her son, to a doll. This may or may not work. It could also be a puppy or kitten (some are animated to move, purr, etc). This may provide some comfort. You want to be open minded to try different things. First though, get volunteers or caregivers in there (to socialize) 2-3-4 x / week. They don't have to do anything or much (necessarily); just be with her. As well, if they can, they could bring music, art paper / pens, puzzles -- the key is to pay attention to her 100%.
Gena / Touch Matter
It seems utterly outrageous that they are demanding your in-person intervention multiple times per week when they are paid to care for your mother. That is their job?!
It does seem that your mom is being manipulative and when things are worked out with the staff, a schedule that works for you needs to be set and maintained.
My mom is in a SNF with mild dementia. I bought her this interactive stuffed cat that is popular with the dementia community. My mom likes it fine but the residents with worse dementia REALLY are fascinated by it. Its not inexpensive but might be worth a try: https://a.co/d/3G7aBBs
I know you’re in the thick of it. I’m praying for you. Please call a lawyer to sort out your options and make sure you’re prepared for whatever move they might make. Might also be useful to discuss other placement options (and how her diagnosis seems to be unfairly limiting her options - is the diagnosis even accurate??).
Keep putting one foot in front of the other.
1.) mother needs a full psychiatric evaluation. She needs Meds. Even if she does become zombie-like. She has no quality of life the way she is
2.) the administrator who put you on notice should be fired. This is unprofessionalism at its worst. But, leave that for now…
3.) Your wife matters. Your own mental health matters and Your happiness matters. Speak with your doctor about your depression. Your mother is in a safe place, she may be giving people a hard time, but she’s safe. Turn off your phone.
4.) people adapt. Even people with dementia adapt. With the right meds your mother will have fewer outbursts and find ways to make herself feel better.
5.) Find out your legal rights so that no admin can threaten you or your mother again. Possibly have your lawyer put the LTC on notice so there is no more harassment.
Things will get better. I wish you all the best
NorasDaughter.
Involve your wife in the search. It will help her to understand what you are going though. If she says no to a place and you think it is okay, ask her for the reasons why no. Make placing your Mom a joint decision.
See if LTCOP in your state/county will provide any assistance for finding a place:
https://acl.gov/programs/Protecting-Rights-and-Preventing-Abuse/Long-term-Care-Ombudsman-Program
As you found out, the general consensus might be dementia, however, many dementia patients are capable of learning. I didn't want to do the therapeutic fibs as that to me, would just erode the trust my Mom had in me. That is part of the dementia, they know something is off, however, they are not aware of how and when they are "off", therefore, they are seeking the truth....and the truth relies on consistency of information.
I wish you well on your journey. The journey is hard and much easier when shared with others.
But hang in there...you're not alone in this sad and difficult journey. For now, just breath. 🙏🏽
I know you said a doll didn’t work but maybe find one of these companies and get a doll that looks like a younger you.
The literal job of an mc is to deal with those who have progressed to the point that it’s beyond the family.