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.
The best thing I think is to learn from others mistakes. I did everything right, or so I thought. Making sure I had a good balance and my care taking wasn't taking away from enjoying retirement age with my husband.
My mistake was bringing it home in my head. I was home physically, but mentally I was still with my mother, worrying about my mother, upset with my mother. Now I'm trying to be present when I'm home. They may help your wife more if you are mentally present
Your mom is now their "buck" and it is up to them to have to figure out how to handle her. They obviously don't want to, even though they are the ones getting paid to do so. That's some crazy mixed up shit for sure!
Typically when a loved one is placed in a facility, they recommend that the family stay away for several weeks so the family member can adjust. Did they not recommend that to you and if they did why didn't you listen?
Your mom will never adjust to her new home if you keep running to her aide every time she calls you.
And the facility should not be calling you every time your mom has an episode, but instead should be handling it best they can and if need be getting their doctor involved to help with medications that might keep her more calm.
I don't blame your wife for feeling neglected, as she is being neglected. Your wife and marriage should be your number one priority, then your children, grandchildren and then your mom.
So as you can see, you do have your priorities mixed up. Hopefully it's only fleeting and you'll soon get them back in order.
And I would keep searching for a better memory care facility for your mom who actually knows how to deal with peoples issues, as obviously the one she's in now doesn't.
The facilities are out there, and it's my understanding that all MC's have to have a set number of Medicaid beds available, so don't give up. And you may have to seek the help of a social worker from your local Senior Services or Area Agency on Aging to help you.
So I would now recommend that you not only take your wife back out on her belated Valentine's dinner, but perhaps even a nice romantic weekend away. And for God's sake, leave your phone turned off while you are!
I was told they could send her to the ED and refuse to take her back, and if I ignore the phone calls I could get in trouble especially if I do not take calls they claim is an emergency.
It really was hard to find this place her MLTC sent her review to everywhere.
Look, the NH can't put her out on the street. They would send her to a hospital and then you decline to pick her up. She will remain hospitalized until a facility is found.
Your mother, it would appear to me, NEEDS to go to a psych facility so that her delusions can be controlled by medication.
Maybe in a perfect world, all demented elders would have one to one competitions to reassure them constantly. Right now, that's not the case.
You, dear man, are going to die from a stress related disease or crash on the way to comforting your mom. Please don't let that happen.
Your first responsibility is to your health and your marriage.
LIke medications did not do anything to prevent her response from the trigger. That is the issue.
I have asked about things like seroquel but was told it is not safe or approved to give to someone with demenita related psychosis. Was told treatment is more about mitigating and removing triggers to limit outbursts.
I am no medical professional, so I do defer to her medical team.
Do I need to find new doctors? She does have a geriatric team that is part of our local hospital and has one of the best dementia related teams.
My mother also recognizes them. Should I just use the doctors afflicted with the facility? Are her current doctors lying to me about treatment for dementia related psychosis?
This is NOT sustainable.
If it kills you, what then? What happens to Mom?
I can tell you the answer. She will quickly enough be provided medication relief.
And yes, I mean EVEN IF IT MEANS she is in a stupor, because quite honestly that is sometimes the only answer. Many elders don't even HAVE children.
The facility is hired to provide this specialized care. So are the doctors involved in the care.
I stand firmly with your wife.
You need to be protected from risking your own life, which is what you are doing.
Your constantly answering this call is enabling them to ignore that this is a person who is in SEVERE DISTRESS.
Tell them that for your own medical reasons you cannot continue this.
Ask that they medicate your mother to the level she is not in distress.
Sorry, you can't fix this. You cannot continue in this manner. Throwing yourself on your mother's funeral pyre isn't going to help her or you, and it will destroy your marriage.
Her doctors refuse to go down the medicate her big time because what they can realisticly do boarders on chemically restraining her. Same reason she is not strapped in her wheelchair.
1. Get yourself into therapy to learn how to take back your power. You cannot set yourself on fire to keep someone else warm.
2. Your mother is in a facility. There is a such thing as an ombudsman who you can file a complaint with. Also, you can file a complaint with the Department of Health about this facility if push comes to shove. Don't let anyone bully you into driving when you are too tired to calm an elderly person down. There are medications to help these people relax. Anyone who refuses to medicate an overly excited senior or refusing to send them to a psychiatric ward so that a geriatric psychiatrist who specializes in these types of cases is wrong. There is nothing wrong with psychiatry.
* I would contact the Department of Aging and find out if there is any help out there.
Please get some rest and relaxation. Your amygdala is probably in overdrive at this point. Listen to your wife and protect your marriage. Your marriage and your family that you have created with your wife comes first.
I know this may sound cold; but people get old. When they need a higher level of care this is when long term care and assisted living comes on the scene. We need to accept the fact that we are no longer able to provide without doing further damage to ourselves mentally and physically.
I took a lot of crap from my family with their nonsense, crap from social workers and Home Health agencies. I was suffering and no one cared. Finally, when I was at work and was just worn, I started the process to move forward to have my disabled placed. It took a while but she eventually was placed and I moved into my own apartment. If I would have stayed in the family home, I probably would have been homeless.
One doctor told me years ago; if you don't look out for yourself, no one else will. I believe in self-preservation.
I’ve only been on this forum for 6 months and I have seen several marriages fall apart over one spouse putting their parent first. I’m not pretending I have it all together myself. My mom’s care is putting a strain on my marriage, even though I have care 6 days a week and mom is only 30 min. away.
You cannot negotiate with a delusion.
You also don’t need to go there 3-4 times a week. Twice a week is plenty.
You can’t let dementia be in control of your life.
You didn’t cause her dementia. You cannot cure her dementia.
Take your wife on a nice vacation and put the facility on do not disturb the entire time. Your wife needs your attention. Your responsibility is to your wife.
Get an elder care lawyer. It would be worth $1,000 for the lawyer to deal with the facility for now.
It was a big help in visits to. We would by outfits at the thrift store, bring presents for the baby and make a big fuss over changing her into her new outfit and then putting her down for her nap while we went for a soda and walk.
Is your mom on any anti-anxiety meds? Sounds like she has sundowning that needs to be addressed by her doctor. I would be looking for a geriatric doctor that has some real experience with medications for the demented.
Best of luck. These situations are tough on all involved.
I like the idea of a babydoll. For my grandmother she loved a stuff animal. When another coworker's mom was placed I suggested she get her a stuffed version of her old dog which went over very well. When my father still lived on his own we hired a companion for once a week. Would it be possible to hire a paid visitor for her? Or ask the local church groups to visit?
I also think you need to report the threat you received. These places count on you not knowing what they can and cannot get away with.
Many a wife would have serious questions about a husband who runs off on Valentine’s Day so mommy can read him bedtime stories. And then you stayed so she thinks YOU like being read Where the Wild Things Are while your wife is crying. You cannot risk your marriage further.
Ask the don what they do with cases that have no family involved. What they do with the court appointed guardian ones. Being Medicaid, they’d be the front line.
It has less to do with me wanting to stay but as the facility administrator told me they could remove her, and if that happens we are back at square one.
Step away. You aren't an expert.
She wants her baby? Well, he's married and has a life and isn't available.
So whatever has to be done to make her accept that fact should be done, and that isn't up to YOU.
YOU have a MARRIAGE TO SAVE.
I'm so sorry that you and mom are going through this, but I'm confused about how much is psychosis and how much is willful temper tantrum.
I have seen a dolls used for someone to talk to & plush toy dogs to pat. Both can sooth well if ot fits with the person's personality. Even folk without dementia who know full well it is a doll or toy can enjoy this (not all, but some). It can fill a tiny part of their social need.
In your shoes, I would get the Ombudsman involved to respond to their threat.
I think your mother would be better off it a specialty psych facility where they are willing to think outside the box in terms of medication.
Your mother has a fatal disease. In my view, under those circumstances it is allowable to try meds that will allow her some peace. And for you not to become suicidal.
I also don't understand the doctors' reluctance to prescribe NECESSARY medication to keep her calm. I think I'd consider asking for a 2nd or even 3rd opinion from different doctors. Even if you have to pay for an independent assessment (if you can), it may be worth it. I'm 87 and hope that if I ever end up in anything remotely like your mother's situation, I'll be medicated to the extent necessary to keep me calm--even if some may consider that a "chemical straitjacket".
What if something happens to you and you can't come running? You get sick, have an accident, or your wife gets sick? They think you should ignore your own family and still come running? The whole "triggers" concept sounds like pop psychology BS. She probably needs Atavan or some type of relaxant drug, and not YOU being the drug! These doctors sound like quacks, you need second opinions.
Find a doctor who will give her tranquilizers, probably daily. I'm not buying the "trigger" nonsense. Anything could be a "trigger." Sounds like they are gaslighting you.
Best wishes.
Thus will not last forever, but things must improve. You may only be able to rely on yourself to make things better.
Your mom may need some medication to soothe her when she grows agitated. Regardless, her care facility is being paid to provide care and handle things. You cannot live life wearing a shock collar. If they “kick her out” you will find another place. The next place might not threaten you. They shouldn’t have harassed you on Valentine’s Day.
This is your wife’s chance to shine as an understanding and supportive spouse. She may not choose to be that way. Her actions are up to her. But when she acts up, try not to “reward” her “bad” behavior because she might continue to “act up” to get your attention.
Do what you can to take care of yourself. Put yourself first. No one else seems to be putting you first so you have to. Find little rewards and treat yourself generously. True rewards don’t need to be financially costly. Mix it up. “I’m going for my Saturday morning hike and I will not have my phone for the next 4 hours” is completely acceptable. Time playing with pets, a simple workout and volunteering help me cope better. Going to a movie can free your mind.
Reach out and reconnect with old friends when you can. Don’t spend time complaining — use this time as a break from your life.
Wishing you the best.
His wife is not a dog.
She has every right to tell him how she feels, which is neglected.
‘One on one’ care means at least 2 full shifts a day available, 7 days a week, and it is simply not affordable – whether in a facility or not. You need to make it clear that you are NOT available, and if necessary find a new doctor.
In short they live in a bubble and don't care about the caregiver. I always knew this.
But sadly I don't know how to help you.
1. How long will your wife stick around? The hurt she feels being down the list to your Mother could be a deep cut that does not heal.
2. What has Mother's Doctor recommended? What can be done about the psychosis?
3. What does the Care Facility recommend?
I get that staff cannot do 1:1, that a hired pesonal care worker needs wages but what if there was no family? Or you were an archaeologist living in a dessert or a long haul truck driver?
All up, it is just not reasonable that you personally sit with your Mother as the 'cure'.
Does Mother sit in the day room? A room where other residents sit & staff supervise? Every care facility I have seen does this with the lonely/fearful/anxious residents. There is often a few sitting right with staff at the desk.
As mentioned not the best but only place that would take her medicaid assessment.
You say they won't give her meds because her bad behavior is triggered, and meds don't stop feelings, you are being lied to with a 1st class snow job.
Yes, meds do stop you from feeling. I was placed on sertraline (splg?) Years ago for a pain management issue, my 21 year old nephew died unexpectedly and I couldn't feel anything, no tears, nothing, that's when I learned you can be a functional zombie.
You need a second opinion, because you are not getting good medical care for your mom and you need to make a decision about how you are going to change the situation. It is all up to you. Keep justifying the situation or find real solutions.
For better or worse she had an outburst early Saturday and she has been in th3 hospital since. Her facility refuses to take her back even though she has no medical reason to stay in the hospital.
So will be working with the hospital going forward.
I also think you need to create some distance until your mother adjusts to her surroundings and routine. Your running there constantly doesn’t help your mother or your marriage.
If you love your wife put her needs first.
I had been an overlooked wife for many years. In the beginning I was a supportive wife but as the years dragged on my husband had essentially abandoned me to care for his mother and then his sister expecting I was a decent person and would understand. It festers after awhile. My husband’s wake up call was when I decided I’d had enough and told him I was filing for divorce. He finally realized the situation needed to change and thankfully for us it did.
if you don’t make some changes it is reasonable to predict this is where your situation will go.
I get it, it is not easy and do not blame or resent her feelings.
Creating distance has lead her to be to sent to the hospital, so figures crossed working with the hospital will yield better results.
Pretend that you have had a heart attack.
Pretend that you have broken a hip.
REALLY. Pick one. Send an email. Pretend it is from your wife.
THEN, stay home and see what they do.
Simple.
Old age, multiple health issues, failing eyesight, failing hearing, painful arthritis, digestive issues etc... do not have effective treatments or cures after a certain point. Being kept from pain and anxiety are about all you can do for them, no matter how much you care. You did not cause her dementia and you cannot cure it. You are not a medical treatment. Sacrificing your own life, self, sanity and family are not the answer! I guarantee you these doctors aren't sitting with their loved ones 3 to 4 days a week to keep them from "freaking out" which you still have not defined. I would look for new docs who understand the needs of the demented elderly and their families.
You sound like a sensitive caring person but you need to DO SOMETHING! You are setting yourself up for a major mental/physical health issue which you possibly will be dealing with alone when your long-suffering wife decides she wants a man who makes her a priority instead of one who continually chooses his mother over her. Why do you worry more about your Mommy's needs than your wife's, or your own, for that matter? I hate to sound harsh but I think you sound like a long-time Momma's boy who has always been under her control and suggest you reach out to a cognitive behavioral therapist to learn how to set boundaries and where your priorities as a married man belong and I would do it ASAP. No shame in getting someone objective to help you look at and find solutions for what has become an unbearable situation.
It doesn't mean you abandon your mother. You have placed her in a facility that is meant to care for her 24/7 and you will still be keeping tabs on her and care about her, but just not as enmeshed with her episodes. Medicating her to prevent "freak outs" may be the kindest thing to do.
That is their right cannot fight it, unfortunately before I could find new doctors she had an outburst and was sent to the ED on Saturday where she has been since.
Will see how the hospital plays out, spoke with the social worker and doctors. Since they have no medical reason to keep her they want to discharge her. Told the social worker I cannot they were not pleased.
Thankfully she is doing well she is in a shared room with a one to one. Waiting to see what tomorrow brings.
Would not say I am a mommas boy, more so I was raised to treat others as I would want to be treated. I would not want to isolated from everyone. I am all my mother has left. Everyone else left, friends, family, hell even her church. The disease will eventually rob her of everything, just did not want to be another thing that takes from her.
As mentioned her freak outs are like a toddler having a tantrum.
It’s astonishing to me that they would threaten to throw her out and dump their job of caring for her onto you! They are failing at their job. You shouldn’t be responsible for visiting her. I wonder if they would give her meds if she didn’t have any children to visit her. What would they do to control her behavior if you weren’t able to visit her?
My godmother was in a facility with advanced Alzheimer’s disease and blind from macular degeneration. She was frightened and would lash out at the aides. She had two sons, one that she didn’t have any contact with and the other lived in another state. He only visited once a year. The nursing home never threatened to throw my godmother out. They medicated her.
I can’t imagine why your mom’s nursing home wouldn’t want to give her the proper meds to calm her down. My mother did very well with a combination of Seroquel and Ativan.
I read your response that your mom didn’t accept the idea of a baby doll. I’m sorry.
I’m also sorry that this situation is causing problems in your marriage.
Is it possible to get another doctor to review your mom’s case? Who have you spoken with at the nursing home?
When my mom was in a nursing home for rehab, there was a woman like your mom who was constantly asking for her son. She was quite delusional. She would ask others to help her find her car in the parking lot so she could go take care of her nine year old son. It was very sad. She thought that she was only 32 years old. The home would give her meds when she became overly upset.
I hope you can resolve this issue soon and resume your life with your wife.
Not to argue with you but just to jog your awareness- you say you are not a Momma's boy that you were raised to treat others how you would want to be treated but how are you treating your wife? Would you expect your kids to drop everything and rush to your side continually to babysit you? Her "freak outs" are toddler like tantrums? Maybe she keeps doing it because it works for her and gets her what she wants. I would stop rewarding the behavior by showing up all the time.
I hope the hospital and the doctors there can come up with something workable for your mother and this situation. I don't know anything about group homes but it seems there would be more opportunity for companionship for her there.
As for kids if we do ever have kids, I hope I am in a position everything I have saved lasts and I die before it runs out.
According to the nurse my mom is doing well, they have her with a one to one in a shared room. The social worker did call me a few times telling me they going to be sending her back, but not sure how that is going to work if they refuse to take her.
It is a possibility she is doing it because it works but so much of this is guess work, and at the time I did not want to deal with the stress of finding placement, having my phone blow up, uncertainty of what will happen like I am going through now. It was easier dealing with a routine versus the uncertainty as to what is going down now.
Maybe been reading the wrong books but everything's seems to vouch for living in their reality and to not fight it which is what I was trying. Guess it was the wrong approach lol now I know this is rough also.
Iol was always sus about these people that promote this mindset because it assumes caregivers are Robots without emotion.